› Forums › General Melanoma Community › 35-Just Diagnosed stage IV..scared
- This topic has 30 replies, 11 voices, and was last updated 14 years, 2 months ago by
LynnLuc.
- Post
-
- September 6, 2010 at 10:45 pm
Im a 35 yr old female who had melanoma removed and i was sent for 6 month and then yearly checkups. Around one year and 3months ago I went to my doctor and showed him a lump where my original tumor was removed. He let it go as scar tissue…told me I was fine and said come back in a year. The lump on my side in that time had doubled and started throwing heat. I went back to my dermatoligist and she biopsied it and my melanoma was back. Went for a PET scan and found out Im in stage IV and it spread to my lungs and in my lymph nodes. I had the mass removed on August 20th of this year.
Im a 35 yr old female who had melanoma removed and i was sent for 6 month and then yearly checkups. Around one year and 3months ago I went to my doctor and showed him a lump where my original tumor was removed. He let it go as scar tissue…told me I was fine and said come back in a year. The lump on my side in that time had doubled and started throwing heat. I went back to my dermatoligist and she biopsied it and my melanoma was back. Went for a PET scan and found out Im in stage IV and it spread to my lungs and in my lymph nodes. I had the mass removed on August 20th of this year. My appointment to just start my clinical trials is Sept 13th JUST FOR THE TESTING!!! Does anyone think that this is too long to wait seeings as this cancer is an aggressive cancer from what ive been reading. I have two beautiful children..and a man in my life that I want to marry and have our little family. I have been thru sooo much from being hit..literally by a moving car…lost my mother after my daughter was born, and she was my best friend..to having a VERY abusive boyfriend ( father of my daughter.)..to getting cancer in 2007 and now its back with vengeance. I really cant catch a break. I am overweight and HATE the sun…yet I mite lose my life over a SUN cancer…I have never been so scared in my whole life…does anyone have any advise on this wait..it grows every 3-6 months but it seems like until im setup in a clinical trial…2 months are gonna go by…its spreading and it seems like no one cares….help!!!!!
- Replies
-
-
- September 6, 2010 at 11:53 pm
I'm sorry that you've had to join us but you will get lots of information and support . There are many of us that have been stage IV for many years. Do not think that this is an automatic death sentence!!
I saw in your profile that you are located in Jim Thorpe. I'm assuming that's in the Catskills. There are several melanoma specialists in Phila. If your not going to a specialist I suggest you get a second opinion immediately before more time passes or you start the trial. What trial is it?
Every person is different and how aggressive their melanoma is different. I was at a surgeon last week and it's taking 3 weeks to get scheduled because of the holiday and the tumor boards schedule. My first recurrance was 4 years ago ,it took 5 weeks to schedule that surgery. We want this to move quickly but it doesn't always happen. If you are going to a melanoma specialist ask why this is taking so long and express an interest to move the testing dates up!!
There are many that have gotten melanoma where the sun doesn't shine!! Yes, many get it from sunbathing or a bad burn, others from tanning booths, and then there are others like you who are never in the sun!
Wishing you the best,
Linda
-
- September 6, 2010 at 11:53 pm
I'm sorry that you've had to join us but you will get lots of information and support . There are many of us that have been stage IV for many years. Do not think that this is an automatic death sentence!!
I saw in your profile that you are located in Jim Thorpe. I'm assuming that's in the Catskills. There are several melanoma specialists in Phila. If your not going to a specialist I suggest you get a second opinion immediately before more time passes or you start the trial. What trial is it?
Every person is different and how aggressive their melanoma is different. I was at a surgeon last week and it's taking 3 weeks to get scheduled because of the holiday and the tumor boards schedule. My first recurrance was 4 years ago ,it took 5 weeks to schedule that surgery. We want this to move quickly but it doesn't always happen. If you are going to a melanoma specialist ask why this is taking so long and express an interest to move the testing dates up!!
There are many that have gotten melanoma where the sun doesn't shine!! Yes, many get it from sunbathing or a bad burn, others from tanning booths, and then there are others like you who are never in the sun!
Wishing you the best,
Linda
-
- September 10, 2010 at 3:14 am
Thank you for your words of encouragement. Since it is taking so long im actually planning a 4 day trip to florida with my daughter so I can see her eyes lite up at Disney…It will also give me time to breathe…I plan on responding to everyone who was kind enough to take time and send me a note. It feels like Im part of a FAMILY who knows what Im going thru. i want to thank u all
-
- September 10, 2010 at 3:14 am
Thank you for your words of encouragement. Since it is taking so long im actually planning a 4 day trip to florida with my daughter so I can see her eyes lite up at Disney…It will also give me time to breathe…I plan on responding to everyone who was kind enough to take time and send me a note. It feels like Im part of a FAMILY who knows what Im going thru. i want to thank u all
-
- September 7, 2010 at 12:16 am
First of all I'm sorry that you're dealing with this but you've come to right place for support and advice. In my opinion waiting is one of the hardest and and most excruciating parts of this journey. When I knew the lump I had was MM it took 2 weeks for the consultation and another 2 weeks for the LND. I tried to get myself in sooner but to no avail. Doctors have told me there melanomas that grow slower than others. the 13th is a week away. Some test results they will have the same day, while other results may take a week (It depends what they need). Are you seeing a melanoma specialist? If you qualify for this particular trial my bet is you will start the trial sooner than 2 months. Maybe more like a month. Call the doc. and ask how long the whole process will take. You can also consider other alternative therapies (along with the conventional therapies) you can do such as nutrition, supplements, exercise and other ways to boost the immune system. You don't have to wait a month or 2 to do these things. It helped me get through the waiting times while doing something on my own that boosted the immune system. I'm sure you will get other responses.
Best of success to you.
Jim M.
Stage 3C
-
- September 7, 2010 at 12:16 am
First of all I'm sorry that you're dealing with this but you've come to right place for support and advice. In my opinion waiting is one of the hardest and and most excruciating parts of this journey. When I knew the lump I had was MM it took 2 weeks for the consultation and another 2 weeks for the LND. I tried to get myself in sooner but to no avail. Doctors have told me there melanomas that grow slower than others. the 13th is a week away. Some test results they will have the same day, while other results may take a week (It depends what they need). Are you seeing a melanoma specialist? If you qualify for this particular trial my bet is you will start the trial sooner than 2 months. Maybe more like a month. Call the doc. and ask how long the whole process will take. You can also consider other alternative therapies (along with the conventional therapies) you can do such as nutrition, supplements, exercise and other ways to boost the immune system. You don't have to wait a month or 2 to do these things. It helped me get through the waiting times while doing something on my own that boosted the immune system. I'm sure you will get other responses.
Best of success to you.
Jim M.
Stage 3C
-
- September 7, 2010 at 8:07 am
Your story sounds a whole lot like mine. I wish it would not have happened again! I had a primary removed (2007) and did my regular skin checks thereafter. Five months after the original removal of the nodular melanoma I pointed out a lump in the scar tissue. Doc said it was just scar tissue. It wasn't until 14 months after the original that I got it removed and it was a huge lump of melanoma! Needless to say it had moved to my lymph nodes.
I know the time you have to wait seems like forever but has much as we feel that this cancer is so aggressive in our own bodies, it doesn't grow so fast that a few weeks can't go by. I understand the panicky feeling of "Get this stuff out of me!" In the USA I had to wait for 7 weeks to see the oncologist to discuss next steps after the TLND. Here in Switzerland now they get me in immediately AND I have direct access to the doctor.
I went stage IV in April 2010, had the lung tumors removed but then it metastized to the pleura in May. I started the Roche B-raf clinical trial in mid June. It took one month to get everything done to get started. Yesterday I had my 12 week scan and the tumors are still shrinking! I know that this drug is not "a cure" but it is buying time to figure out the next steps. I have an overflowing feeling of hope and that is worth more than the drugs in some cases.
I know this is difficult. The best advise I can give you is to BREATH and PRAY for PEACE of MIND so you can live your life while all of this going on. Living in the fear of all the "what ifs" is paralyzing. Believe me, I know this. One thing I do is I find some good daily affirmation books which help me to start my day, as well as reciting the 23rd Psalm.
The journey of shifting all of the options is daunting. This board has a wealth of fabulous and knowlegable people. don't be afraid to ask.
Breathe.
Peace,
Shelly in SW
-
- September 7, 2010 at 8:07 am
Your story sounds a whole lot like mine. I wish it would not have happened again! I had a primary removed (2007) and did my regular skin checks thereafter. Five months after the original removal of the nodular melanoma I pointed out a lump in the scar tissue. Doc said it was just scar tissue. It wasn't until 14 months after the original that I got it removed and it was a huge lump of melanoma! Needless to say it had moved to my lymph nodes.
I know the time you have to wait seems like forever but has much as we feel that this cancer is so aggressive in our own bodies, it doesn't grow so fast that a few weeks can't go by. I understand the panicky feeling of "Get this stuff out of me!" In the USA I had to wait for 7 weeks to see the oncologist to discuss next steps after the TLND. Here in Switzerland now they get me in immediately AND I have direct access to the doctor.
I went stage IV in April 2010, had the lung tumors removed but then it metastized to the pleura in May. I started the Roche B-raf clinical trial in mid June. It took one month to get everything done to get started. Yesterday I had my 12 week scan and the tumors are still shrinking! I know that this drug is not "a cure" but it is buying time to figure out the next steps. I have an overflowing feeling of hope and that is worth more than the drugs in some cases.
I know this is difficult. The best advise I can give you is to BREATH and PRAY for PEACE of MIND so you can live your life while all of this going on. Living in the fear of all the "what ifs" is paralyzing. Believe me, I know this. One thing I do is I find some good daily affirmation books which help me to start my day, as well as reciting the 23rd Psalm.
The journey of shifting all of the options is daunting. This board has a wealth of fabulous and knowlegable people. don't be afraid to ask.
Breathe.
Peace,
Shelly in SW
-
- September 7, 2010 at 1:34 pm
I'm so sorry that you had to join this "club" of Stage IV!
You will find a wealth of knowledge and wonderful people here on mpip. I've been Stage IV for 2 years now. I've had surgeries, leukine, trial. My latest scans continue to show shrinkage and I plan on doing 8 more weeks of the trial in the hopes that these little buggers in my neck disappear for good!
What trial are you trying to get in?
I know everything seems so scary right now. The waiting and waiting is horrible! It seemed to me we should do everything yesterday! But the waiting will be over before you know it and hopefully things will start getting better!
Kellie(from Iowa) Stage IV
-
- September 7, 2010 at 1:34 pm
I'm so sorry that you had to join this "club" of Stage IV!
You will find a wealth of knowledge and wonderful people here on mpip. I've been Stage IV for 2 years now. I've had surgeries, leukine, trial. My latest scans continue to show shrinkage and I plan on doing 8 more weeks of the trial in the hopes that these little buggers in my neck disappear for good!
What trial are you trying to get in?
I know everything seems so scary right now. The waiting and waiting is horrible! It seemed to me we should do everything yesterday! But the waiting will be over before you know it and hopefully things will start getting better!
Kellie(from Iowa) Stage IV
-
- September 7, 2010 at 2:47 pm
well, one of the best things you can do, is evaluate which particular trial you will be starting. Let us know so we can help you start thinking through your choices/options, an involved patient always has a better chance.
-
- September 13, 2010 at 12:58 am
I have my appointment tomorrow. I think one option is IL-2…i read about that but im scared either way u look at it. I feel like i have 4-6 months with my children…
-
- September 13, 2010 at 1:11 am
There are a lot of other options out there besides IL2, which can have some nasty side effects. You should talk to your Onc about the different trials on clinicaltrials.gov for Melanoma. There are quite a few options, as you will find if you look at the other posts. The options depend on if you test positive for different characteristics in your blood or DNA. I was lucky to test positive for the BRAF mutation and will get into a BRAF trial with the oncologist I have already seen and do not have to travel to a different location. There is always compassionate use of Ipilimumab until it is approved by the FDA later this year or next year. Don't be afraid to ask about the options before you chose one and have some others as fall back if necessary.
Dont focus on some perceived timeframe that you have left. Nobody knows for sure and the people who try to give out numbers are usually wrong. Nobody has those numbers stamped on the bottom of their feet. Live life each day to the best of your ability, love your family and work like hell to beat this thing. it can be done. Others have done it. I hope to be one of those who can say that I beat it. I am going to go down kicking and screaming, (and probably a little bit of crying) but at least I can say I tried.
Don't give up. I am trying not to, even though I get scared and down from time to time. I try to think about the good things in life and the things that I would still like to do. I want a corvette, but my wife does not seem to think that it is a wise investment at this time. Hey, I could cash out my 401K like Cathy from the showtime series the BIG C did, but that is not a good idea if I plan on continuing to live for a long time, which I do.
-
- September 13, 2010 at 1:11 am
There are a lot of other options out there besides IL2, which can have some nasty side effects. You should talk to your Onc about the different trials on clinicaltrials.gov for Melanoma. There are quite a few options, as you will find if you look at the other posts. The options depend on if you test positive for different characteristics in your blood or DNA. I was lucky to test positive for the BRAF mutation and will get into a BRAF trial with the oncologist I have already seen and do not have to travel to a different location. There is always compassionate use of Ipilimumab until it is approved by the FDA later this year or next year. Don't be afraid to ask about the options before you chose one and have some others as fall back if necessary.
Dont focus on some perceived timeframe that you have left. Nobody knows for sure and the people who try to give out numbers are usually wrong. Nobody has those numbers stamped on the bottom of their feet. Live life each day to the best of your ability, love your family and work like hell to beat this thing. it can be done. Others have done it. I hope to be one of those who can say that I beat it. I am going to go down kicking and screaming, (and probably a little bit of crying) but at least I can say I tried.
Don't give up. I am trying not to, even though I get scared and down from time to time. I try to think about the good things in life and the things that I would still like to do. I want a corvette, but my wife does not seem to think that it is a wise investment at this time. Hey, I could cash out my 401K like Cathy from the showtime series the BIG C did, but that is not a good idea if I plan on continuing to live for a long time, which I do.
-
- September 13, 2010 at 2:03 am
Believe me, I know how terrifying it is to think about not being around much longer for your child/ren. for me, it was the most difficult thing to consider and come to terms with. This may not make you feel better, but *I* certainly find it wonderful that I am still here and caring for my child who's now 5, when I was diagnosed just before her 3rd birthday and statistically unlikely to be around for her 4th birthday. I was first diagnosed with melanoma when they found brain tumours- so was stage 4 at diagnosis, and with an unknown primary.
2.5 years later, 6 craniotomies (2 of them doubles- so 8 to date) and 2 failed chemo's (temodar and fotemustine), and numerous SRS treatments, I still drive. Still care for my girl. Am still fully functioning and independent. So try not to FEEL like it's all you have left with your children. I acknowledged it, had some hard moments (still do sometimes), and then decided it was simply unacceptable, and was determined not to let mel spoil my time with my girl.
Now, 2.5 years later, I decided to learn the acoustic guitar last week, and get my lazy butt back on the treadmill. Believe it or not, after a while, everyday concerns become the norm, and mel only gets a little look in every now and again when it requires a scan, or treatment. I think people let mel win when they let it negatively affect their daily lives. It's normal and perfectly ok to be scared, but we need to focus that fear into doing something positive, even if it's adjusting a thought process, rather than letting it cripple us and leave us floundering.
Nic
xxx
-
- September 13, 2010 at 2:03 am
Believe me, I know how terrifying it is to think about not being around much longer for your child/ren. for me, it was the most difficult thing to consider and come to terms with. This may not make you feel better, but *I* certainly find it wonderful that I am still here and caring for my child who's now 5, when I was diagnosed just before her 3rd birthday and statistically unlikely to be around for her 4th birthday. I was first diagnosed with melanoma when they found brain tumours- so was stage 4 at diagnosis, and with an unknown primary.
2.5 years later, 6 craniotomies (2 of them doubles- so 8 to date) and 2 failed chemo's (temodar and fotemustine), and numerous SRS treatments, I still drive. Still care for my girl. Am still fully functioning and independent. So try not to FEEL like it's all you have left with your children. I acknowledged it, had some hard moments (still do sometimes), and then decided it was simply unacceptable, and was determined not to let mel spoil my time with my girl.
Now, 2.5 years later, I decided to learn the acoustic guitar last week, and get my lazy butt back on the treadmill. Believe it or not, after a while, everyday concerns become the norm, and mel only gets a little look in every now and again when it requires a scan, or treatment. I think people let mel win when they let it negatively affect their daily lives. It's normal and perfectly ok to be scared, but we need to focus that fear into doing something positive, even if it's adjusting a thought process, rather than letting it cripple us and leave us floundering.
Nic
xxx
-
- September 13, 2010 at 12:58 am
I have my appointment tomorrow. I think one option is IL-2…i read about that but im scared either way u look at it. I feel like i have 4-6 months with my children…
-
- September 19, 2010 at 3:32 am
I dont know how to thank every person who responded to me nore have the time with computer access…but all your stories here make me believe i have hope. im balling my eyes out now knowing there are people concerned about me and caring enuff to write bak…i cant even spell right cuz my eyes are fogging up. my father sending me and my 7 yr old daughter to florida for a vacation. Then when i get back on the 29th i am going in hospital for the IL-2 treatment. They told me the other week i only had couple spots on one side of my lungs..but they lied. My doctor from St lukes told me i apparently have an inumerous amount of spots all over and its in my uterus….i heard the tim mcgraw song the other day driving…"live like u were dying" and it really hit me hard knowing im in that situation. Im trying to be strong but at the same time im scared as hell….i want my life and this isnt fair for ANYONE to deal with this thing called cancer that destroys families and lives…i want to be strong but its hard.
-
- September 19, 2010 at 3:32 am
I dont know how to thank every person who responded to me nore have the time with computer access…but all your stories here make me believe i have hope. im balling my eyes out now knowing there are people concerned about me and caring enuff to write bak…i cant even spell right cuz my eyes are fogging up. my father sending me and my 7 yr old daughter to florida for a vacation. Then when i get back on the 29th i am going in hospital for the IL-2 treatment. They told me the other week i only had couple spots on one side of my lungs..but they lied. My doctor from St lukes told me i apparently have an inumerous amount of spots all over and its in my uterus….i heard the tim mcgraw song the other day driving…"live like u were dying" and it really hit me hard knowing im in that situation. Im trying to be strong but at the same time im scared as hell….i want my life and this isnt fair for ANYONE to deal with this thing called cancer that destroys families and lives…i want to be strong but its hard.
-
- September 14, 2010 at 2:25 pm
I understand the shock you must have felt when informed of your status and though you may likely have to undergo more than one treatment protocol, don't despair. My story may help some. I went into Stage IV four years ago, underwent several chemo treatments, and have now been cancer free for two years. I initially received Interferon. The next treatment was IL2 combined with several other chemos. This treatment was rugged and they had to back off the IL2. Lastly I was placed in a clinical trial which made all the tumors, save one, disappear. The last was eventually removed (along with the other lymph nodes in that side of my abdomen) with surgery. The hair is back, my strength is back, I gained the pounds back I lost (sigh), and almost as healthy as before all this started. I have some residual neuropathy in the hands and feet caused by the chemo but that is very manageable.
The best recommendation I can give is to get to MD Anderson (if you have not already) as soon as you can. I was told by my local oncologist I had 6 months after my first round of chemo failed. After seeing several others in several other hospitals/med centers I contacted MD Anderson. I had been told by some people about it and had heard about it before but hadn't considered it. There are many knowledgeable oncologists out there and many very good hospitals. But I have found none that can compare with the cutting-edge knowledge, broad treatment possibilities, and quality of care that I found there.
My insurance company initially said that MD Anderson was not, oh…what was the term…"In Network", and so I initially had to bring a big check along. But a day after my first meeting with them the folks at MD Anderson called and said their atty's talked with my insurance company atty's and I am now "In Network". I mentioned this because it shows how they were willing to go above and beyond in my estimation to help.
-
- September 19, 2010 at 3:34 am
I dont know how to thank every person who responded to me nore have the time with computer access…but all your stories here make me believe i have hope. im balling my eyes out now knowing there are people concerned about me and caring enuff to write bak…i cant even spell right cuz my eyes are fogging up. my father sending me and my 7 yr old daughter to florida for a vacation. Then when i get back on the 29th i am going in hospital for the IL-2 treatment. They told me the other week i only had couple spots on one side of my lungs..but they lied. My doctor from St lukes told me i apparently have an inumerous amount of spots all over and its in my uterus….i heard the tim mcgraw song the other day driving…"live like u were dying" and it really hit me hard knowing im in that situation. Im trying to be strong but at the same time im scared as hell….i want my life and this isnt fair for ANYONE to deal with this thing called cancer that destroys families and lives…i want to be strong but its hard.
-
- September 19, 2010 at 3:34 am
I dont know how to thank every person who responded to me nore have the time with computer access…but all your stories here make me believe i have hope. im balling my eyes out now knowing there are people concerned about me and caring enuff to write bak…i cant even spell right cuz my eyes are fogging up. my father sending me and my 7 yr old daughter to florida for a vacation. Then when i get back on the 29th i am going in hospital for the IL-2 treatment. They told me the other week i only had couple spots on one side of my lungs..but they lied. My doctor from St lukes told me i apparently have an inumerous amount of spots all over and its in my uterus….i heard the tim mcgraw song the other day driving…"live like u were dying" and it really hit me hard knowing im in that situation. Im trying to be strong but at the same time im scared as hell….i want my life and this isnt fair for ANYONE to deal with this thing called cancer that destroys families and lives…i want to be strong but its hard.
-
- September 14, 2010 at 2:25 pm
I understand the shock you must have felt when informed of your status and though you may likely have to undergo more than one treatment protocol, don't despair. My story may help some. I went into Stage IV four years ago, underwent several chemo treatments, and have now been cancer free for two years. I initially received Interferon. The next treatment was IL2 combined with several other chemos. This treatment was rugged and they had to back off the IL2. Lastly I was placed in a clinical trial which made all the tumors, save one, disappear. The last was eventually removed (along with the other lymph nodes in that side of my abdomen) with surgery. The hair is back, my strength is back, I gained the pounds back I lost (sigh), and almost as healthy as before all this started. I have some residual neuropathy in the hands and feet caused by the chemo but that is very manageable.
The best recommendation I can give is to get to MD Anderson (if you have not already) as soon as you can. I was told by my local oncologist I had 6 months after my first round of chemo failed. After seeing several others in several other hospitals/med centers I contacted MD Anderson. I had been told by some people about it and had heard about it before but hadn't considered it. There are many knowledgeable oncologists out there and many very good hospitals. But I have found none that can compare with the cutting-edge knowledge, broad treatment possibilities, and quality of care that I found there.
My insurance company initially said that MD Anderson was not, oh…what was the term…"In Network", and so I initially had to bring a big check along. But a day after my first meeting with them the folks at MD Anderson called and said their atty's talked with my insurance company atty's and I am now "In Network". I mentioned this because it shows how they were willing to go above and beyond in my estimation to help.
-
- You must be logged in to reply to this topic.