› Forums › General Melanoma Community › Beginning my journey with melanoma.
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- February 9, 2011 at 5:17 pm
Hi all! I am the latest newbie…stage 3, "some would say stage 4" 23 year old from Virginia.
It started similiarly to many other stories. I was washing the dishes, had an itch, scratched my back and felt something unusual: the mole on my left shoulder felt like a scab. When I had my boyfriend look at it, he realized there was a clear fluid coming from it. Although the mole had healed by my appoinment with my dermatologist, I decided to have it checked out anyway. He seemed confident it was nothing, but just to be sure, he removed it.
Hi all! I am the latest newbie…stage 3, "some would say stage 4" 23 year old from Virginia.
It started similiarly to many other stories. I was washing the dishes, had an itch, scratched my back and felt something unusual: the mole on my left shoulder felt like a scab. When I had my boyfriend look at it, he realized there was a clear fluid coming from it. Although the mole had healed by my appoinment with my dermatologist, I decided to have it checked out anyway. He seemed confident it was nothing, but just to be sure, he removed it.
On January 10, 2011 I went in to have my stiches removed. I am joking with the nurse, making plans for my evening, when the doctor walks in. I hear, blah, blah blah, "Malignant Melanoma. No, I wish I was joking."
Oh.
That is SO not what I want to hear…
On January 26, 2011 I went in for a wide excision and a lymph node biopsy. Unfortunately for me, 4 areas lit up when the tech's injected the dye: both armpits, both sides of my neck. Prior to rolling me into the OR, my surgeon let me know that if he could find the lymph nodes, he was removing them. Waking up from surgery, he, who I refer to as Dr. Pink (breast cancer advocate,) was right there…Yes, he removed nodes from all 4 areas. Yes, it's going to hurt for a while.
(Dr. Pink was right about the pain…OUCH. And the numbness I still feel 2 weeks later? Very odd. Lucky for me, my body rejected either the tape they used to cover the incisions or the glue used to seal me shut…Now I am covered in an itchy, raw, red rash. I started an antibiotic a week ago, so far it is not working.)
A week of pain and waiting passes…the oncologist, (who I refer to as Dr. Bad Mustache. Love him but…!!) calls me into the office. 3 out of 4 locations tested positive for metastatic malignant melanoma.
More bad news.
Off I go for the PET CT and MRI…Both came back clear! Finally…good news!
Now…here's where I need help. My oncologist here believes Interferon is my only option at this point.
I don't like what I have read about Interferon so far…..Experiences from you all? Thoughts?
I have an appointment with Dr. Mark Dickson at Sloan Kettering in New York City on the 25th of this month. Any opinions here?
My oncologist here stressed that I am an "odd" case. My original melanoma was only 1.15 mm. It hardly made critera for additional testing. He admitted to us this week that he did not believe my lymph nodes would come back positive. And he especially could not believe that multiple locations were positive. In his words, "You are an odd case. Right now all we know is that it has the ability to spread."
Any advice, support, experiences…I would greatly appreciate hearing it all. Like many of you, I have a hard time resting. I am doing as much research as I can possibly do, but sometimes that does nothing but terrify me even more!
In advance, thank you for any and all help!
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- February 9, 2011 at 6:08 pm
Hi and I'm glad you found your way here. I signed on for the first time two and a half years ago, also stage 3 at that time. I remember how terrified I was and my experience with the diagnosing doctor was very much like yours. I was in such a place of stunned shock that I realized I had to not do the errands I planned but go straight home because I wasn't safe to be driving around. I still think doctors should bring in a counselor to sit with you until they are sure you are safe!
I am being treated at UNM Cancer Center in Albuquerque, NM. At the time I was diagnosed interferon was what was being offered for stage 3 so I assumed that is what I would have. My oncologist told me that they were no longer recommending interferon because they believed the potential damage it does was not worth the small chance of delayed recurrance. I know that other people on this list have done it and are doing it and feel that it made a real difference in they're staying NED. My suggestion would be to do your research, see what other options might be available and then make an informed decision. In my case I chose not to do interferon and went on a 'wait and watch' protocol with regular PET/CT scans.
I read everything I could find too and became really good at finding and understanding information on the internet. It is really scarey at first but in my case, knowledge is power and it helped me to deal with the doctors better if nothing else. So keep reading and just know that the fear does get better! It's amazing what we humans can learn to adapt to and after a while, much as I hate to say it, navigating the maze of melanoma doctors, hospitals and treatments has become second nature.
Find a good counselor with experience in working with cancer survivors. Also, if you need medication to get through the initial stress, ask for it. Xanax became my friend those first few months to get me through anxiety attacks and to help me sleep. I still take cymbalta but mostly for management of chronic nerve pain and if it is helping me with mood swings too, so much the better!
I like your Grey's Anatomy quote because if you let yourself get caught up in statistics, you will never get past the fear. Shoot…statistically there are a whole lot of us on this board who should be dead by now but we are still alive, still fighting and still loving every minute of life! So stay strong and don't be afraid of asking questions about different treatment options here. I am always amazed at the amount of knowldege available on this forum.
The best to you and hopefully you will get more positive news soon – Carmon in NM
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- February 9, 2011 at 11:06 pm
Carmon,
I loved reading your message. You sound so upbeat and positive–love that! I believe you are absolutely right when you said it is amazing what humans can adapt to…I remember my initial fear when my oncologist broke the news to me…and I think about myself now…I can talk cancer without crying. I'm already beginning to adapt! (Sure wish I didn't have to though.)
How is the "watch and wait" protocol working out for you? How often do you have PET/CT scans? I think I would probably drive myself crazy if I did that….but someone in another reply made a good point–you cannot have regrets about whatever treatment you choose. Depending on what Sloan Kettering tells me, maybe that's the path I will choose too.
Basically….I have no clue. And it makes me nervous.
I have NOT been able to sleep well since the surgery, especially not after hearing that the nodes were positive. But my independent (silly) self does not want to ask for the medication…I think it would really help me…But why do I feel guilty for allowing myself that? I think that's what I am struggling with…I want to BE strong enough not to need it.
My boyfriend said to me today, "I think I am going to start counting how many times you wake up in the middle of the night." He did not say it to be mean, he simply said it because he knows I am not sleeping. Maybe I need to think about asking for that help…
About the Grey's quote–I think what you said is SO true. Statistics cause fear! I NEED to hear about other cancer survivors, especially the ones that beat all odds, because it gives me hope. I realize that there are people FAR worse off than I am, and I should embrace where I am, do everything I can in my power to take care of myself, and simply live my life.
Maybe soon I will feel better about things….the reality is setting in right now.
Again, thank you for all of your advice.
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- February 9, 2011 at 11:42 pm
HI again – to answer your question…I had PET/CT scans initially every four months. I only had micrometastisis in one sentinal node from an ulcerated lesion on my upper left arm. I had Wide Lesion Excision and Lymph Node Dissection under that arm but not deep level as all indications were that this mel was/is very slow growing.
I had just graduated to annual scans and made almost two years NED before two mets showed up in my brain. Do I have any regrets about not doing interferon? Nope! That kind of thinking will make you crazy for sure! And, I made it nearly a year longer than doing interferon would likely have bought me without a recurrance so how can I complain?
The brain mets were treated with both a craniotomy and Gamma Knife Surgery. It has been eight months now and all brain MRIs have remained clean which is wonderful. Now see what I mean? When in my earlier life would I have ever thought I could calmly and even humorously talk about brain tumors, surgery and radiation treatment!
In September I had a new met show up on my right adrenal gland and at that point we decided to try a 'systemic' approach (a PC way to refer to chemotherapy!). I went into a phase 2 drug trail combining three cancer drugs. The fantastic news was that after my second infusion the adrenal tumor had shrunk by more than 50%. That was good news my husband and I needed to hear!
I have my 5th infusion and a set of full body CT and brain MRI scans on the 16th and then my 6th and last infusion in March. When I'm done with that, I'll have surgery to remove the complete adrenal gland in hopes that we have killed off any stray cells and that will remove the source of any new ones.
Please don't deny yourself the relief medication can help you with! You really need the rest so that your body can fight, no matter what treatment you go with. You have already shown that you ARE strong by how you are approaching all of this. I think I only took xanax for a few months before I had found the balance I needed to do without it. These days I laugh more than I ever did previously in my life and I find more joy in my marriage, where I live and my dogs and horses than I can express. Tell me I'm crazy, but life is very, very good! Carmon
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- February 9, 2011 at 11:42 pm
HI again – to answer your question…I had PET/CT scans initially every four months. I only had micrometastisis in one sentinal node from an ulcerated lesion on my upper left arm. I had Wide Lesion Excision and Lymph Node Dissection under that arm but not deep level as all indications were that this mel was/is very slow growing.
I had just graduated to annual scans and made almost two years NED before two mets showed up in my brain. Do I have any regrets about not doing interferon? Nope! That kind of thinking will make you crazy for sure! And, I made it nearly a year longer than doing interferon would likely have bought me without a recurrance so how can I complain?
The brain mets were treated with both a craniotomy and Gamma Knife Surgery. It has been eight months now and all brain MRIs have remained clean which is wonderful. Now see what I mean? When in my earlier life would I have ever thought I could calmly and even humorously talk about brain tumors, surgery and radiation treatment!
In September I had a new met show up on my right adrenal gland and at that point we decided to try a 'systemic' approach (a PC way to refer to chemotherapy!). I went into a phase 2 drug trail combining three cancer drugs. The fantastic news was that after my second infusion the adrenal tumor had shrunk by more than 50%. That was good news my husband and I needed to hear!
I have my 5th infusion and a set of full body CT and brain MRI scans on the 16th and then my 6th and last infusion in March. When I'm done with that, I'll have surgery to remove the complete adrenal gland in hopes that we have killed off any stray cells and that will remove the source of any new ones.
Please don't deny yourself the relief medication can help you with! You really need the rest so that your body can fight, no matter what treatment you go with. You have already shown that you ARE strong by how you are approaching all of this. I think I only took xanax for a few months before I had found the balance I needed to do without it. These days I laugh more than I ever did previously in my life and I find more joy in my marriage, where I live and my dogs and horses than I can express. Tell me I'm crazy, but life is very, very good! Carmon
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- February 9, 2011 at 11:06 pm
Carmon,
I loved reading your message. You sound so upbeat and positive–love that! I believe you are absolutely right when you said it is amazing what humans can adapt to…I remember my initial fear when my oncologist broke the news to me…and I think about myself now…I can talk cancer without crying. I'm already beginning to adapt! (Sure wish I didn't have to though.)
How is the "watch and wait" protocol working out for you? How often do you have PET/CT scans? I think I would probably drive myself crazy if I did that….but someone in another reply made a good point–you cannot have regrets about whatever treatment you choose. Depending on what Sloan Kettering tells me, maybe that's the path I will choose too.
Basically….I have no clue. And it makes me nervous.
I have NOT been able to sleep well since the surgery, especially not after hearing that the nodes were positive. But my independent (silly) self does not want to ask for the medication…I think it would really help me…But why do I feel guilty for allowing myself that? I think that's what I am struggling with…I want to BE strong enough not to need it.
My boyfriend said to me today, "I think I am going to start counting how many times you wake up in the middle of the night." He did not say it to be mean, he simply said it because he knows I am not sleeping. Maybe I need to think about asking for that help…
About the Grey's quote–I think what you said is SO true. Statistics cause fear! I NEED to hear about other cancer survivors, especially the ones that beat all odds, because it gives me hope. I realize that there are people FAR worse off than I am, and I should embrace where I am, do everything I can in my power to take care of myself, and simply live my life.
Maybe soon I will feel better about things….the reality is setting in right now.
Again, thank you for all of your advice.
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- February 9, 2011 at 6:08 pm
Hi and I'm glad you found your way here. I signed on for the first time two and a half years ago, also stage 3 at that time. I remember how terrified I was and my experience with the diagnosing doctor was very much like yours. I was in such a place of stunned shock that I realized I had to not do the errands I planned but go straight home because I wasn't safe to be driving around. I still think doctors should bring in a counselor to sit with you until they are sure you are safe!
I am being treated at UNM Cancer Center in Albuquerque, NM. At the time I was diagnosed interferon was what was being offered for stage 3 so I assumed that is what I would have. My oncologist told me that they were no longer recommending interferon because they believed the potential damage it does was not worth the small chance of delayed recurrance. I know that other people on this list have done it and are doing it and feel that it made a real difference in they're staying NED. My suggestion would be to do your research, see what other options might be available and then make an informed decision. In my case I chose not to do interferon and went on a 'wait and watch' protocol with regular PET/CT scans.
I read everything I could find too and became really good at finding and understanding information on the internet. It is really scarey at first but in my case, knowledge is power and it helped me to deal with the doctors better if nothing else. So keep reading and just know that the fear does get better! It's amazing what we humans can learn to adapt to and after a while, much as I hate to say it, navigating the maze of melanoma doctors, hospitals and treatments has become second nature.
Find a good counselor with experience in working with cancer survivors. Also, if you need medication to get through the initial stress, ask for it. Xanax became my friend those first few months to get me through anxiety attacks and to help me sleep. I still take cymbalta but mostly for management of chronic nerve pain and if it is helping me with mood swings too, so much the better!
I like your Grey's Anatomy quote because if you let yourself get caught up in statistics, you will never get past the fear. Shoot…statistically there are a whole lot of us on this board who should be dead by now but we are still alive, still fighting and still loving every minute of life! So stay strong and don't be afraid of asking questions about different treatment options here. I am always amazed at the amount of knowldege available on this forum.
The best to you and hopefully you will get more positive news soon – Carmon in NM
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- February 9, 2011 at 6:23 pm
Hey There
So sorry to meet you here… You'll get lots of advise here (go to a melanoma center, check clinical trials, etc) but I am going to speak to the bad reputation that Interferon has developed.
My husband was dx with Stage 3B melanoma in November. Unfortunately as a stage 3 patient you are going to find that your options for treatment are quite limited and you will receive differing advise on the benefits of Interferon… mostly negative. You will hear the argument that the side effects don't warrant the benefits… that only a select few have an increase duration until recurrence and that it doesn't change the overall survival. But Interferon was our only option for treatment and we both agreed that watching and waiting or relying on nutritional changes was not enough. If he is one of the 50% that has a recurrence we never want to say 'maybe we should have…..' So TJ, my hubby, is on day 13 of the initial 20 doses.
We did apply for a clinical trial (GSK Derma- MAGE A3). He didn't qualify… but while we waited for the results of his screening I had already decided that it would be OK if he didn't qualify. Its a placebo trial and the anxiety of wondering if he was getting the drug may have been too much… also there is really no evidence that it works… hence the clinical trial.
So here we are more than half way through the Interferon induction and he is doing better than we expected after all of our research. We meet every day at the infusion clinic for a 2pm date. The first 2 nights he had fevers/chills 5 hours post infusion.. controlled with tylenol, advil (and a few doses of Ativan). Then symptoms became more vague… some intermittent nausea, fatigue, and decreased appetite (he has always been a big eater so now he's still eating plenty, just less). He goes to work everyday early and stays until 1:30 then off to the clinic. He is president of a big company and has been able to remain present and active. He also runs 5 miles on the treadmill after his infusion everyday. I admit that this is his personality but I did fear that he would not be able to keep up with his regular routine but he it doing well.
He has blood work done every Monday and has a consistent low WBC count. So far liver is OK. He drinks a lot of water everyday to keep his hydration up.. and he gets IV fluids each day. He keeps an IV in his arm for 3 days then they change it… they take it out for the weekend.
We know that his cumulative side effects could get worse but I just want to say that it is quite manageable for him. When we see the chemo patients at the clinic, he certainly looks the healthiest.
There are 2 clinical trials that you may qualify for one is the one I mentioned above. The other is the Ipi vs placebo trial… but only 50% of the patients get the drug. However, there is a new clinical trial starting that is Ipi vs Interferon. So at least you are getting treated with one or the other. I emailed the main doc at Pitt to ask him about it in January and he said it was not quite ready to start. Maybe it will be ready for you… check clinicaltrials.gov #NCT01274338 Dr Tarhini will email you right back if you contact him.
Sorry for that ranting but I wished I could have heard something positive about Interferon when we were making our decision and there wasn't anything out there.
Try to sleep, eat, don't ask too much of yourself, rely on others and let them help you…. Hoping you are faithful and that you pray. I find my comfort there.
Take Care
Kelly
Grant me, O Lord, a sunny mind… Your windy will to bear.
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- February 9, 2011 at 8:31 pm
Kelly,
Thank you for your response! During my appointment with my oncologist, I made him tell me everything about Interferon that he possibly could. But hearing it from a doctor is totally different than hearing it from someone who is actually going through it. Thank you for explaining everything. I was wondering if they keep the IV in you or how that works…It is little things like that that doctors leave out.
I am not TOTALLY against doing it…But if there are other options…well…I at least want a second opinion.
I think it is great that your husband is doing so well. I love to hear that people can continue with their normal lives with minimal adjustments. I hope he continues to do well. He will be in my thoughts.
I wrote down the information you gave me so that I can do additional research. I have found that the more I know, the more comfortable I feel…even when the information does scare me.
I absolutely LOVE what you said: "Try to sleep, eat, don't ask too much of yourself, rely on others and let them help you….Hoping you are faithful and that you pray. I find my comfort there." I wrote that down in my journal (writing about this experience has been the best therapy for me so far) for when I need a little boost. I have been able to do all of the above…except sleep. My mind refuses to rest.
Again–thank you for your message. Best wishes to your husband!
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- February 9, 2011 at 8:31 pm
Kelly,
Thank you for your response! During my appointment with my oncologist, I made him tell me everything about Interferon that he possibly could. But hearing it from a doctor is totally different than hearing it from someone who is actually going through it. Thank you for explaining everything. I was wondering if they keep the IV in you or how that works…It is little things like that that doctors leave out.
I am not TOTALLY against doing it…But if there are other options…well…I at least want a second opinion.
I think it is great that your husband is doing so well. I love to hear that people can continue with their normal lives with minimal adjustments. I hope he continues to do well. He will be in my thoughts.
I wrote down the information you gave me so that I can do additional research. I have found that the more I know, the more comfortable I feel…even when the information does scare me.
I absolutely LOVE what you said: "Try to sleep, eat, don't ask too much of yourself, rely on others and let them help you….Hoping you are faithful and that you pray. I find my comfort there." I wrote that down in my journal (writing about this experience has been the best therapy for me so far) for when I need a little boost. I have been able to do all of the above…except sleep. My mind refuses to rest.
Again–thank you for your message. Best wishes to your husband!
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- February 9, 2011 at 6:23 pm
Hey There
So sorry to meet you here… You'll get lots of advise here (go to a melanoma center, check clinical trials, etc) but I am going to speak to the bad reputation that Interferon has developed.
My husband was dx with Stage 3B melanoma in November. Unfortunately as a stage 3 patient you are going to find that your options for treatment are quite limited and you will receive differing advise on the benefits of Interferon… mostly negative. You will hear the argument that the side effects don't warrant the benefits… that only a select few have an increase duration until recurrence and that it doesn't change the overall survival. But Interferon was our only option for treatment and we both agreed that watching and waiting or relying on nutritional changes was not enough. If he is one of the 50% that has a recurrence we never want to say 'maybe we should have…..' So TJ, my hubby, is on day 13 of the initial 20 doses.
We did apply for a clinical trial (GSK Derma- MAGE A3). He didn't qualify… but while we waited for the results of his screening I had already decided that it would be OK if he didn't qualify. Its a placebo trial and the anxiety of wondering if he was getting the drug may have been too much… also there is really no evidence that it works… hence the clinical trial.
So here we are more than half way through the Interferon induction and he is doing better than we expected after all of our research. We meet every day at the infusion clinic for a 2pm date. The first 2 nights he had fevers/chills 5 hours post infusion.. controlled with tylenol, advil (and a few doses of Ativan). Then symptoms became more vague… some intermittent nausea, fatigue, and decreased appetite (he has always been a big eater so now he's still eating plenty, just less). He goes to work everyday early and stays until 1:30 then off to the clinic. He is president of a big company and has been able to remain present and active. He also runs 5 miles on the treadmill after his infusion everyday. I admit that this is his personality but I did fear that he would not be able to keep up with his regular routine but he it doing well.
He has blood work done every Monday and has a consistent low WBC count. So far liver is OK. He drinks a lot of water everyday to keep his hydration up.. and he gets IV fluids each day. He keeps an IV in his arm for 3 days then they change it… they take it out for the weekend.
We know that his cumulative side effects could get worse but I just want to say that it is quite manageable for him. When we see the chemo patients at the clinic, he certainly looks the healthiest.
There are 2 clinical trials that you may qualify for one is the one I mentioned above. The other is the Ipi vs placebo trial… but only 50% of the patients get the drug. However, there is a new clinical trial starting that is Ipi vs Interferon. So at least you are getting treated with one or the other. I emailed the main doc at Pitt to ask him about it in January and he said it was not quite ready to start. Maybe it will be ready for you… check clinicaltrials.gov #NCT01274338 Dr Tarhini will email you right back if you contact him.
Sorry for that ranting but I wished I could have heard something positive about Interferon when we were making our decision and there wasn't anything out there.
Try to sleep, eat, don't ask too much of yourself, rely on others and let them help you…. Hoping you are faithful and that you pray. I find my comfort there.
Take Care
Kelly
Grant me, O Lord, a sunny mind… Your windy will to bear.
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- February 9, 2011 at 6:37 pm
Hi,
I read you are from Virginia? We live in Northern VA and started out at Johns Hopkins. My husband was stage 3 at the time and after surgery for the lymph nodes at Johns Hopkins, the doctors did HLA testing to see if my husband fit into any Stage 3 vaccine trials as an alternate to Interferon. The doctors at Johns Hopkins felt that they were doing real progress with the vaccines and that my husband would be better off in a trial. So, Bob my husband tested HLA-A2 and he was sent over by referral from the Johns Hopkins doctors to NIH in Bethesda. You can look at their site to see if any new trials interest you and if you feel that might be a good route to go. http://www.nih.gov/ I would also talk to the doctors at Sloan about NIH, see what their opinion is. We actually got at least 2 opinions from major melanoma centers.
Bob did a vaccine for GP100 at the time, that was 2007-2008. I'm sure there are many other options. My husband did move to Stage IV in 2008 and NIH wasted no time getting him in for treatment. He has done IL-2 and surgery. He is now NED for 1 1/2 years. Your probably thinking that vaccine didn't help, but this was 4 years ago and NIH is very aggressive and the clinical trials are changing all the time. If you get in to NIH you are open to a lot more options for treatments.
Best of luck to you!
Rebecca
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- February 9, 2011 at 8:19 pm
Rebecca,
I am so glad to hear that your husband is NED! Congratulations to both of you! I know it had to have been quite the battle.
Yes, I'm a VA girl, too! I am from the Eastern Shore of VA (Chincoteague) but I currently live in Roanoke. Not too far from ya!
Thank you for all of your advice. I am writing everything down. The poor doctor at Sloan won't be able to stop me from asking questions! 🙂
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- February 9, 2011 at 8:19 pm
Rebecca,
I am so glad to hear that your husband is NED! Congratulations to both of you! I know it had to have been quite the battle.
Yes, I'm a VA girl, too! I am from the Eastern Shore of VA (Chincoteague) but I currently live in Roanoke. Not too far from ya!
Thank you for all of your advice. I am writing everything down. The poor doctor at Sloan won't be able to stop me from asking questions! 🙂
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- February 9, 2011 at 6:37 pm
Hi,
I read you are from Virginia? We live in Northern VA and started out at Johns Hopkins. My husband was stage 3 at the time and after surgery for the lymph nodes at Johns Hopkins, the doctors did HLA testing to see if my husband fit into any Stage 3 vaccine trials as an alternate to Interferon. The doctors at Johns Hopkins felt that they were doing real progress with the vaccines and that my husband would be better off in a trial. So, Bob my husband tested HLA-A2 and he was sent over by referral from the Johns Hopkins doctors to NIH in Bethesda. You can look at their site to see if any new trials interest you and if you feel that might be a good route to go. http://www.nih.gov/ I would also talk to the doctors at Sloan about NIH, see what their opinion is. We actually got at least 2 opinions from major melanoma centers.
Bob did a vaccine for GP100 at the time, that was 2007-2008. I'm sure there are many other options. My husband did move to Stage IV in 2008 and NIH wasted no time getting him in for treatment. He has done IL-2 and surgery. He is now NED for 1 1/2 years. Your probably thinking that vaccine didn't help, but this was 4 years ago and NIH is very aggressive and the clinical trials are changing all the time. If you get in to NIH you are open to a lot more options for treatments.
Best of luck to you!
Rebecca
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- February 9, 2011 at 6:57 pm
From reading your profile, I am guessing you had a Sentinel Node Biopsy in those different spots as opposed to all you lymph nodes removed. Is this correct?
Do you have a copy of your Biopsy reports? If not, get them. One interesting number on the biopsy report for the original tumor will be the mitosis rate. If this is high it might explain why the Mel spread so rapidly.
You'll be in good hand at Sloan so I'd listen carefully,maybe bring someone else with you. I too am stage 3, I chose not to do the interferon route but to "wait and watch". I did have all the lymph nodes under my right arm removed, that was 9 months ago and still some nerve problems and a little lymphodema. Nothing that I can't live with.
I have read on this board that some people at stage 3 are now being offered some different options. Hopefully Sloane has access to some of those because like you I was not impressed by the stats on interferon.
Good Luck
Mary
Stage 3
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- February 9, 2011 at 8:16 pm
Mary,
I did have a Sentinel Node Biopsy done in all four spots. I talked to both my surgeon and my oncologist about the benefit of removing more lymph nodes, but they both agreed there is no scientific proof that the surgery would be beneficial at this time. And honestly…I am totally comfortable with that. I was fearing more surgery!
I do have a copy of my biopsy reports. It was 4 per sq mm. (I believe that is correct. I do not have the report in front of me right now.)
Good luck to you as well, Mary. Hopefully they will have new options for people like us soon!
Take Care,
Chelsea
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- February 9, 2011 at 8:43 pm
Hi
My 22 year old son finished a year of interferon in August. He was able to go back to school full time and do most everything he usually did beofre his dx.. There is also another poster, Jen, who was 26 and just got done with a year if interferon. She may be a good one for you to talk to and may check in here and respond. I think that youth is on your side as far as side effects go, especially if you are healthy to begin with.
Good luck
Becky
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- February 9, 2011 at 8:43 pm
Hi
My 22 year old son finished a year of interferon in August. He was able to go back to school full time and do most everything he usually did beofre his dx.. There is also another poster, Jen, who was 26 and just got done with a year if interferon. She may be a good one for you to talk to and may check in here and respond. I think that youth is on your side as far as side effects go, especially if you are healthy to begin with.
Good luck
Becky
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- February 9, 2011 at 9:02 pm
Becky,
I am trying to make this situation as pleasant as possible…If code names make me giggle, code names it is!
I am glad to hear that your son is doing well. It is so interesting to see how differently people respond.
Looking forward to hearing from Becky!!
Good luck to them both. 🙂
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- February 9, 2011 at 9:02 pm
Becky,
I am trying to make this situation as pleasant as possible…If code names make me giggle, code names it is!
I am glad to hear that your son is doing well. It is so interesting to see how differently people respond.
Looking forward to hearing from Becky!!
Good luck to them both. 🙂
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- February 9, 2011 at 10:23 pm
Hi Chelsea,
You have come to the right place for information to supplement what your medical providers explain and for support. There is a whole new language for cancer especially melanoma and you will learn that here. So sorry too that your mole was melanoma….good for you to get it checked. Now you need to be vigilant and look for spots or moles that CHANGE.Call your doctor right away if this happens. I have found every single spot of melanoma on my skin…..NOT the doctor or a PET/CT scan. I am VIGILANT!!!!
The decision of whether to do interferon is a tough one. I chose to do Interferon as the "watch and wait" was not acceptable to me……..I wanted to do everything I could to "fight" CANCER. I chose to do the one year of interferon. I took a year leave of absence from work……the right decision as my biggest side effect was fatigue. I slept alot! You can read people's accounts of how they managed, everyone has different ideas of what helped them. Some people worked, some didnt.
Interferon doesnt "cure" melanoma but can delay an occurence. I went 11 months before I had a re-occurence. Who knows? maybe I would have had a re-occurence sooner if I didnt do the interferon. Once you choose your treatment option, have no regrets and dont look back. Some say the 4 weeks of high dose is enough, some say the 4 weeks of high dose and then 11 months of 3x week self administered shots is the way to go. My melanoma oncologist recommended that latter (this was also almost 4 years ago). There are differing opinions among melanoma oncologists about what is better.
When you read about statistics and studies pay careful attention to the validity and credibility of said study. You can make a study look anyway you want if that is your goal…be sure there is more than a small number in the study and look at who did the study, Be SMART!
Best of luck, and keep coming back here…you will learn alot.
Vermont_Donna, stage 3a, currently finished 4th dose of Ipi
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- February 9, 2011 at 10:23 pm
Hi Chelsea,
You have come to the right place for information to supplement what your medical providers explain and for support. There is a whole new language for cancer especially melanoma and you will learn that here. So sorry too that your mole was melanoma….good for you to get it checked. Now you need to be vigilant and look for spots or moles that CHANGE.Call your doctor right away if this happens. I have found every single spot of melanoma on my skin…..NOT the doctor or a PET/CT scan. I am VIGILANT!!!!
The decision of whether to do interferon is a tough one. I chose to do Interferon as the "watch and wait" was not acceptable to me……..I wanted to do everything I could to "fight" CANCER. I chose to do the one year of interferon. I took a year leave of absence from work……the right decision as my biggest side effect was fatigue. I slept alot! You can read people's accounts of how they managed, everyone has different ideas of what helped them. Some people worked, some didnt.
Interferon doesnt "cure" melanoma but can delay an occurence. I went 11 months before I had a re-occurence. Who knows? maybe I would have had a re-occurence sooner if I didnt do the interferon. Once you choose your treatment option, have no regrets and dont look back. Some say the 4 weeks of high dose is enough, some say the 4 weeks of high dose and then 11 months of 3x week self administered shots is the way to go. My melanoma oncologist recommended that latter (this was also almost 4 years ago). There are differing opinions among melanoma oncologists about what is better.
When you read about statistics and studies pay careful attention to the validity and credibility of said study. You can make a study look anyway you want if that is your goal…be sure there is more than a small number in the study and look at who did the study, Be SMART!
Best of luck, and keep coming back here…you will learn alot.
Vermont_Donna, stage 3a, currently finished 4th dose of Ipi
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- February 9, 2011 at 8:16 pm
Mary,
I did have a Sentinel Node Biopsy done in all four spots. I talked to both my surgeon and my oncologist about the benefit of removing more lymph nodes, but they both agreed there is no scientific proof that the surgery would be beneficial at this time. And honestly…I am totally comfortable with that. I was fearing more surgery!
I do have a copy of my biopsy reports. It was 4 per sq mm. (I believe that is correct. I do not have the report in front of me right now.)
Good luck to you as well, Mary. Hopefully they will have new options for people like us soon!
Take Care,
Chelsea
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- February 9, 2011 at 6:57 pm
From reading your profile, I am guessing you had a Sentinel Node Biopsy in those different spots as opposed to all you lymph nodes removed. Is this correct?
Do you have a copy of your Biopsy reports? If not, get them. One interesting number on the biopsy report for the original tumor will be the mitosis rate. If this is high it might explain why the Mel spread so rapidly.
You'll be in good hand at Sloan so I'd listen carefully,maybe bring someone else with you. I too am stage 3, I chose not to do the interferon route but to "wait and watch". I did have all the lymph nodes under my right arm removed, that was 9 months ago and still some nerve problems and a little lymphodema. Nothing that I can't live with.
I have read on this board that some people at stage 3 are now being offered some different options. Hopefully Sloane has access to some of those because like you I was not impressed by the stats on interferon.
Good Luck
Mary
Stage 3
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- February 9, 2011 at 10:03 pm
My husband had a second opinion at Sloan Kettering one year ago, after his initial surgery, and at that time they didn't recommend interferon. It seemed to me that they were not fans of this form of treatment. That being said, we couldn't sit,watch, and wait, so for our mental health, he started interferon last May, and now only has three months left to complete his year. Other than being tired and losing weight, he has done remarkably well. He works his job and helps with our two elementary school aged children. If you decide to take interferon, your youth will likely help you weather this treatment.
With all that said, you will see from reading this Board, that everyone has to find their own path in fighting this disease that they are comfortable with and just go with it. We ended up at Dana Farber, taking the interferon, and changing his diet and adding supplements. So far, so good! If you decide not to do any treatment, don't second guess yourself! I read this Bulletin daily and I have definitely learned to appreciate all the differences among the people who fight this disease, but the common thread is that we all want to beat the BEAST and we all try to support each other thru the journey. I have also learned to truly appreciate all the little moments I took for granted in the past. God Bless! Keep us informed on how you are doing, you are not alone!! Valerie (Phil's wife)
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- February 9, 2011 at 10:03 pm
My husband had a second opinion at Sloan Kettering one year ago, after his initial surgery, and at that time they didn't recommend interferon. It seemed to me that they were not fans of this form of treatment. That being said, we couldn't sit,watch, and wait, so for our mental health, he started interferon last May, and now only has three months left to complete his year. Other than being tired and losing weight, he has done remarkably well. He works his job and helps with our two elementary school aged children. If you decide to take interferon, your youth will likely help you weather this treatment.
With all that said, you will see from reading this Board, that everyone has to find their own path in fighting this disease that they are comfortable with and just go with it. We ended up at Dana Farber, taking the interferon, and changing his diet and adding supplements. So far, so good! If you decide not to do any treatment, don't second guess yourself! I read this Bulletin daily and I have definitely learned to appreciate all the differences among the people who fight this disease, but the common thread is that we all want to beat the BEAST and we all try to support each other thru the journey. I have also learned to truly appreciate all the little moments I took for granted in the past. God Bless! Keep us informed on how you are doing, you are not alone!! Valerie (Phil's wife)
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- February 10, 2011 at 1:29 am
I'm stage 3C and had my nodes removed from my right axillary. I decided against interferon and went on a trial with Ipilimumab and vaccines. The trial was available for stage 3 resected melanoma. I've been NED for over 3 years.
You can email my oncologist, Jeffrey Weber, for any questions. He's one of the top immunologists in the U.S. having studied under Dr. Rosenberg. He'll often answer you the same day if you email him early in the day. His email is: [email protected]
God Bless,
Jim M.
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- February 10, 2011 at 1:29 am
I'm stage 3C and had my nodes removed from my right axillary. I decided against interferon and went on a trial with Ipilimumab and vaccines. The trial was available for stage 3 resected melanoma. I've been NED for over 3 years.
You can email my oncologist, Jeffrey Weber, for any questions. He's one of the top immunologists in the U.S. having studied under Dr. Rosenberg. He'll often answer you the same day if you email him early in the day. His email is: [email protected]
God Bless,
Jim M.
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- February 10, 2011 at 1:29 am
Hi there. I live in Abingdon, VA – not too far from you. I was diagnosed June 2010, stage 3B, unknown primary and amelanotic node. I was referred to Dr Craig Slingluff at UVA who is an oncology surgeon specializing in melanoma. He did a complete axillary node dissection in July 2010. Fortunately, only the single palpable node was malignant – 24 others were benign. I am participating in the GSK DERMA vaccine clinical trial that Kelly mentioned. I also get these injections at UVA. Dr Slingluff would be another close opinion for you to check into if you feel you need it after your SK appointment. I was not real excited about interferon but did not want to "watch and wait". The DERMA trial was my only other option and thankfully, I qualified. I did not qualify for the IPI trial because of me being an unknown primary.
Hang in there and knowledge is good. Just do not let this keep you from living your life and stay positive!
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- February 10, 2011 at 1:29 am
Hi there. I live in Abingdon, VA – not too far from you. I was diagnosed June 2010, stage 3B, unknown primary and amelanotic node. I was referred to Dr Craig Slingluff at UVA who is an oncology surgeon specializing in melanoma. He did a complete axillary node dissection in July 2010. Fortunately, only the single palpable node was malignant – 24 others were benign. I am participating in the GSK DERMA vaccine clinical trial that Kelly mentioned. I also get these injections at UVA. Dr Slingluff would be another close opinion for you to check into if you feel you need it after your SK appointment. I was not real excited about interferon but did not want to "watch and wait". The DERMA trial was my only other option and thankfully, I qualified. I did not qualify for the IPI trial because of me being an unknown primary.
Hang in there and knowledge is good. Just do not let this keep you from living your life and stay positive!
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- February 10, 2011 at 1:32 am
Hi Cl,
I won't say much except that if it is possible to get an appointment at NYU (a few miles away from Sloan) on the same day, take it. Dr. Anna Pavlick is in charge of the melanoma program there. She's my doc and she is fantastic. If you google her name, I'm sure that you'll find her quotes, etc. They have had some immunotherapy trials there. I don't know what they have going on now but it is worth a call. They did have a trial for NYES01 with the Ludwig Institute that had great success on a small scale. I don't know what phase it is in now though. I agree with those that say don't be afraid to get some medication for anxiety, if that is what you are feeling.
Best wishes for a long life.
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- February 10, 2011 at 1:32 am
Hi Cl,
I won't say much except that if it is possible to get an appointment at NYU (a few miles away from Sloan) on the same day, take it. Dr. Anna Pavlick is in charge of the melanoma program there. She's my doc and she is fantastic. If you google her name, I'm sure that you'll find her quotes, etc. They have had some immunotherapy trials there. I don't know what they have going on now but it is worth a call. They did have a trial for NYES01 with the Ludwig Institute that had great success on a small scale. I don't know what phase it is in now though. I agree with those that say don't be afraid to get some medication for anxiety, if that is what you are feeling.
Best wishes for a long life.
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- February 10, 2011 at 4:19 pm
I didn't read through all the posts from other MPIP members so maybe they have said this already – but you should investigate the standard Bio-Chemo treatment. My husband was Stage VI with 17 mets in lymph nodes and soft tissue (no tumor mass in organs) and he had a full response. He has had no evidence of disease for 5.5 years now. Treatment is tough, but if it is going to work for you – it can really work. My husband's melanoma was very aggressive/fast spreading – sounds like maybe yours is too. I actually think this is a good thing for helping chemo to work because the cancer sucks up the chemo quicker (my opinion only). Details of my husband's case are on my profile. Feel free to contact me for anything. Erica
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- February 10, 2011 at 4:19 pm
I didn't read through all the posts from other MPIP members so maybe they have said this already – but you should investigate the standard Bio-Chemo treatment. My husband was Stage VI with 17 mets in lymph nodes and soft tissue (no tumor mass in organs) and he had a full response. He has had no evidence of disease for 5.5 years now. Treatment is tough, but if it is going to work for you – it can really work. My husband's melanoma was very aggressive/fast spreading – sounds like maybe yours is too. I actually think this is a good thing for helping chemo to work because the cancer sucks up the chemo quicker (my opinion only). Details of my husband's case are on my profile. Feel free to contact me for anything. Erica
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- February 10, 2011 at 4:56 pm
I would like to second Erica's suggestion of biochemo. It would at least be worth looking into. My husband had nearly 50 positive nodes in both the axillary and supraclavicular lymph basins–still considered stage III because they were adjacent. He did 4 rounds of biochemo, and had a complete response. This month we are celebrating 12 years of NED. It is a very harsh treatment, usually done for stage IV, not for everyone, but it did work for him. Feel free to contact if you want to know more about his experience.
I would recommend lots of research–learn all you can about all your options. You can often get feedback from major treatment centers without actually going there.
Prayers and best wishes.
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- February 11, 2011 at 2:23 pm
It is hard to keep up with all of the responses I have received!
Congrats both Erica and Phyllis! I am happy to hear that your husbands are doing well.
I am going to check into the biochemo. I want to do everything I can do to keep this from spreading elsewhere. The oncologist seemed so surprised that there was positive nodes in multiple sites…and that concerns me.
I will be in touch with you both soon! I would like more details.
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- February 16, 2011 at 11:50 pm
I was also going to suggest BioChem. I was diagnosed in July 2010 with two lymph nodes affected – Stage IIIb. I had surgery to remove the primary site, plus I had 22 nodes removed. I was offered Luekine from Mayo, did local radiation, and finally heard about BioChem being offered to Stage III patients giving them a better chance for long term survival. I wanted to "throw the kitchen sink" at this thing and figured it was the most aggressive thing I could do. I just finished 4 rounds. Just before I started I had a small reoccurrence in my arm pit area where the nodes were removed. It was a small tumor that showed up in the PET scans just before I started. They left it in to see how it responded to the treatment. Between rounds 2 and 3 of the biochem, I had another PET scan and the tumor was completely INACTIVE (no FDG uptake). This was very good news..the mel was being affected.
Its a brutal treatment – inpatient for 5 days with two weeks between. But, I got through it. I'm hoping for long term results. Good luck to you in your research and treatment. Its one of the most difficult parts of this journey – Shari
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- February 16, 2011 at 11:50 pm
I was also going to suggest BioChem. I was diagnosed in July 2010 with two lymph nodes affected – Stage IIIb. I had surgery to remove the primary site, plus I had 22 nodes removed. I was offered Luekine from Mayo, did local radiation, and finally heard about BioChem being offered to Stage III patients giving them a better chance for long term survival. I wanted to "throw the kitchen sink" at this thing and figured it was the most aggressive thing I could do. I just finished 4 rounds. Just before I started I had a small reoccurrence in my arm pit area where the nodes were removed. It was a small tumor that showed up in the PET scans just before I started. They left it in to see how it responded to the treatment. Between rounds 2 and 3 of the biochem, I had another PET scan and the tumor was completely INACTIVE (no FDG uptake). This was very good news..the mel was being affected.
Its a brutal treatment – inpatient for 5 days with two weeks between. But, I got through it. I'm hoping for long term results. Good luck to you in your research and treatment. Its one of the most difficult parts of this journey – Shari
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- February 11, 2011 at 2:23 pm
It is hard to keep up with all of the responses I have received!
Congrats both Erica and Phyllis! I am happy to hear that your husbands are doing well.
I am going to check into the biochemo. I want to do everything I can do to keep this from spreading elsewhere. The oncologist seemed so surprised that there was positive nodes in multiple sites…and that concerns me.
I will be in touch with you both soon! I would like more details.
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- February 19, 2011 at 4:58 am
I agree with Jake…I think people need to hear this more often!
Thank you all for sharing your stories. I am going to be emailing for questions about the Biochem. I am willing to do whatever I need to do to make sure I'm here for as long as possible! Anxiously waiting for my appointment at Sloan Kettering next Friday…I will update with their opinion.
I had an appointment at UVA…I am now regretting canceling that, but my doctor discouraged me from seeing too many other doctors…he said it was like buying a car…you end up buying whoever sold their product the best. I am kicking myself in the butt for that now.
Thank you for all of the advice…this forum has been so much help.
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- February 19, 2011 at 4:58 am
I agree with Jake…I think people need to hear this more often!
Thank you all for sharing your stories. I am going to be emailing for questions about the Biochem. I am willing to do whatever I need to do to make sure I'm here for as long as possible! Anxiously waiting for my appointment at Sloan Kettering next Friday…I will update with their opinion.
I had an appointment at UVA…I am now regretting canceling that, but my doctor discouraged me from seeing too many other doctors…he said it was like buying a car…you end up buying whoever sold their product the best. I am kicking myself in the butt for that now.
Thank you for all of the advice…this forum has been so much help.
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- February 10, 2011 at 4:56 pm
I would like to second Erica's suggestion of biochemo. It would at least be worth looking into. My husband had nearly 50 positive nodes in both the axillary and supraclavicular lymph basins–still considered stage III because they were adjacent. He did 4 rounds of biochemo, and had a complete response. This month we are celebrating 12 years of NED. It is a very harsh treatment, usually done for stage IV, not for everyone, but it did work for him. Feel free to contact if you want to know more about his experience.
I would recommend lots of research–learn all you can about all your options. You can often get feedback from major treatment centers without actually going there.
Prayers and best wishes.
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- February 16, 2011 at 4:01 am
I wanted to weigh in, as I had a similar experience. I was dx with stage IIIC a little over three years ago (32 yrs old at the time of diagnosis). Interferon wasn't given as my only option, but I was essentially left to research my own other options. I decided against interferon, which was the right decision for me, but as others have said, only you can make that decision for yourself. I checked out a number of clinical trials and ended up at a vaccine trial in your 'hood–UVA. If you want to email me, I'm happy to give you more dets. But let me tell you, for me it was worth the very rigorous schedule of flying from Seattle (where I live) to the east coast regularly for a few months to do it. I'm lucky in that I have a large supportive family who donated frequent flier tix for me, which made it possible. I'm now 3 years NED and feel like UVA is my home away from home b/c of the experience. Again, I am happy to provide any other info. Please feel free to email me!
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- February 16, 2011 at 8:22 am
Holy Cow – reading all of this is like reading my own story. Like Cameron, had a SNB, upper left arm, came back microtrace. I was also told interferon would do nothing for me, couldn't do wait and see, not for me – went on the Ipi trial – got the meds. Know this because I got several of the wonderful side effects – most of which is itching and scratching like a dog with mange, but they give you great drugs so its manageable. Ipi did not work for me, on to stage iv, and like most have said I am trying not to second guess my decision. The one good thing that Ipi did for me, they scan you like crazy people so when it went stage iv, they knew it right away. So if I have to be thankful for anything in stage iv, that would be it.
It is true that the statistics can literally make you ill. Did a "great" job for me when I found out in June of 2010. I still have a lot of anger that I am trying to overcome. Anger mostly because, I went to my dr early trying to be proactive and she blew me off, but the past is past and I am trying to work through it and stay in the moment. As I have learned since then – there are lots of options and let me echo the many others and say do your research.
I am not a extremely "religious" person, but I do know, as cliche (sp) as it sounds and is, everything happens for a reason. I have no idea why "someone" would elect to have anyone have something like this happen to anyone, but I am finding lots of support and meeting people that are touching my life in ways I would have never imagined.
Hang in there – you will find what is right for you and as you said you will adapt to this new world you are living in. I did anxiety drugs for all of a week, twice – once when I got the initial dx and then when they told me it was stage iv. Hell maybe I do need mental counseling. I balk at the idea of people getting in my business. There is not much fun about any of this but, with the right attitude and this incredible board, that I only wish I had happened on earlier, things will be okay. I was truly amazed at how long people have been doing this and the journeys they have been on. As Cameron said, if you read the stats we are all long gone. Someone said to me just today – In then end things will be okay, if it's not okay it's not the end. I believe that is going to become my new motto.
Best of luck to you – Keep posting I am routing for your successful journey. Till next time Hugs and smiles 🙂
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- February 16, 2011 at 8:22 am
Holy Cow – reading all of this is like reading my own story. Like Cameron, had a SNB, upper left arm, came back microtrace. I was also told interferon would do nothing for me, couldn't do wait and see, not for me – went on the Ipi trial – got the meds. Know this because I got several of the wonderful side effects – most of which is itching and scratching like a dog with mange, but they give you great drugs so its manageable. Ipi did not work for me, on to stage iv, and like most have said I am trying not to second guess my decision. The one good thing that Ipi did for me, they scan you like crazy people so when it went stage iv, they knew it right away. So if I have to be thankful for anything in stage iv, that would be it.
It is true that the statistics can literally make you ill. Did a "great" job for me when I found out in June of 2010. I still have a lot of anger that I am trying to overcome. Anger mostly because, I went to my dr early trying to be proactive and she blew me off, but the past is past and I am trying to work through it and stay in the moment. As I have learned since then – there are lots of options and let me echo the many others and say do your research.
I am not a extremely "religious" person, but I do know, as cliche (sp) as it sounds and is, everything happens for a reason. I have no idea why "someone" would elect to have anyone have something like this happen to anyone, but I am finding lots of support and meeting people that are touching my life in ways I would have never imagined.
Hang in there – you will find what is right for you and as you said you will adapt to this new world you are living in. I did anxiety drugs for all of a week, twice – once when I got the initial dx and then when they told me it was stage iv. Hell maybe I do need mental counseling. I balk at the idea of people getting in my business. There is not much fun about any of this but, with the right attitude and this incredible board, that I only wish I had happened on earlier, things will be okay. I was truly amazed at how long people have been doing this and the journeys they have been on. As Cameron said, if you read the stats we are all long gone. Someone said to me just today – In then end things will be okay, if it's not okay it's not the end. I believe that is going to become my new motto.
Best of luck to you – Keep posting I am routing for your successful journey. Till next time Hugs and smiles 🙂
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- February 16, 2011 at 4:01 am
I wanted to weigh in, as I had a similar experience. I was dx with stage IIIC a little over three years ago (32 yrs old at the time of diagnosis). Interferon wasn't given as my only option, but I was essentially left to research my own other options. I decided against interferon, which was the right decision for me, but as others have said, only you can make that decision for yourself. I checked out a number of clinical trials and ended up at a vaccine trial in your 'hood–UVA. If you want to email me, I'm happy to give you more dets. But let me tell you, for me it was worth the very rigorous schedule of flying from Seattle (where I live) to the east coast regularly for a few months to do it. I'm lucky in that I have a large supportive family who donated frequent flier tix for me, which made it possible. I'm now 3 years NED and feel like UVA is my home away from home b/c of the experience. Again, I am happy to provide any other info. Please feel free to email me!
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Tagged: cutaneous melanoma
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