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- This topic has 30 replies, 7 voices, and was last updated 12 years, 10 months ago by
JerryfromFauq.
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- May 26, 2011 at 12:49 am
I am the primary caregiver for my husband who has been dianosed with Stage 4 Melanoma Cancer with tumors in his lung and liver. That was Valentine's Day 2011 and he has completed his first series of IL-2. It actually went better than expected buy we have to now wait for results until June 21st. Since cancer has become part of our lives it has been so different and scarey. Looking for someone to relate to with this experience so that I can atleast survive whatever lies ahead.
I am the primary caregiver for my husband who has been dianosed with Stage 4 Melanoma Cancer with tumors in his lung and liver. That was Valentine's Day 2011 and he has completed his first series of IL-2. It actually went better than expected buy we have to now wait for results until June 21st. Since cancer has become part of our lives it has been so different and scarey. Looking for someone to relate to with this experience so that I can atleast survive whatever lies ahead.
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- May 26, 2011 at 1:06 am
Deb, I am right there with you. I am the primary caregiver for my husband who was diagnosed with melanoma in his right underarm lymph nodes April 1st and only found out for sure he was Stage IV on May 6th. Don's melanoma has spread very quickly, now located in bones in pelvis, spine, ribs, as well as liver and lungs.
We just found out today that he is BRAF positive, so he is getting the rest of the qualifying tests done and we hope he will start treatment next week. Up until now, he's had no treatment other than pain management.
It's insane how quickly your life turns upside down and inside out, isn't it? Do you also have children?
Michelle, wife of Don, Stage IV
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- May 26, 2011 at 11:37 pm
Hi Michelle,
So sorry about your husband's diagnosis. It is so scary and makes life so uncertain. The weird thing about my husband's cancer is that he seems fine other than he tires easily and has lost so much weight. It sounds like your husband is so much worse. What is BRAF positive? I am very close to retirement and all my husband and I have talked about is how we will spend our retirement years. Shudder to think I may spend them alone. I try not to think that way but sometimes, it's hard not to. We have a wonderful Dr. and facility that we go to in Detroit MI so we are so blessed with that. Where do you live? Do you have children? Please keep in touch I enjoy sharing with you and I hope you feel the same way. The very best to you and your husband. Please keep me posted on how you both are doing.
Debby
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- May 27, 2011 at 1:37 am
I know what you mean about them seeming fine. My husband doesn't "look" like a cancer patient and until the pain got ahead of him this week, he continued to go to work every day. Even his boss had no idea how sick he really was until I spoke with her yesterday.
Don is unfortunate in that he has a very aggressive form of melanoma and once it got past his lymph nodes it's gone all over the place. BRAF is a genetic mutation that appears in about 60 percent of melanoma. There are some new experimental treatments that are showing great promise that target this mutation. My husband is in line to get into one of those trials. We are hoping he will show the same sort of improvement that other patients have in this trial.
I know what you mean about not wanting to think about doing it all alone. Trust me, I've thought about it a lot. My husband and I are in our 40s and we have two teenaged kids. We live about 40 miles north of Boston.
I take it that you are from the Detroit area then, as your doctors are there. My husband is originally from Dearborn and his family still lives in the Detroit area.
I noticed in another post someone had mentioned Jane. She is a veteran of IL-2 who actually made a "how to survive IL-2" list. I'm sure other people who have been on the site longer can point you in the right direction. I've heard her tips are fantastic and might significantly help your husband with his IL-2 experience.
Michelle
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- May 27, 2011 at 1:37 am
I know what you mean about them seeming fine. My husband doesn't "look" like a cancer patient and until the pain got ahead of him this week, he continued to go to work every day. Even his boss had no idea how sick he really was until I spoke with her yesterday.
Don is unfortunate in that he has a very aggressive form of melanoma and once it got past his lymph nodes it's gone all over the place. BRAF is a genetic mutation that appears in about 60 percent of melanoma. There are some new experimental treatments that are showing great promise that target this mutation. My husband is in line to get into one of those trials. We are hoping he will show the same sort of improvement that other patients have in this trial.
I know what you mean about not wanting to think about doing it all alone. Trust me, I've thought about it a lot. My husband and I are in our 40s and we have two teenaged kids. We live about 40 miles north of Boston.
I take it that you are from the Detroit area then, as your doctors are there. My husband is originally from Dearborn and his family still lives in the Detroit area.
I noticed in another post someone had mentioned Jane. She is a veteran of IL-2 who actually made a "how to survive IL-2" list. I'm sure other people who have been on the site longer can point you in the right direction. I've heard her tips are fantastic and might significantly help your husband with his IL-2 experience.
Michelle
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- May 28, 2011 at 10:32 am
BRAF is both a Oncoprotein over expression and a group of DNA mutations. It appears in 50-60 of general melanomas, but cn be mutually exclusive with some types of melanoma mutations such as c-kit mutations. Different drugs are being tested to determine which of the mutations each will attack. One company that tests for their drug says that you aare not BRAF positive if you have a different BRAF mutation than the one they want to test against. If told one is BRAF negative, one needs to know exactly what they were tested for and against. One may be BRAF positive for a different mutation than what they tested for. To date there are no long term results available, but short term results have been astounding for many that have the mutation they want for a test. I have read that statistically speaking, about 50% have further growth after about year. Does this mean that 50% don’t? Even a year delay can get one closer to what might be something that will at least make their case a chronic condition not an immediately catastrophic one.
There is much work also going on as to what secondary signaling paths may need to be concurently attacked for longer term success. -
- May 28, 2011 at 10:34 am
Discussion of BRAF
http://findarticles.com/p/articles/mi_m0PDG/is_5_3/ai_n13457679/ -
- May 28, 2011 at 10:34 am
Discussion of BRAF
http://findarticles.com/p/articles/mi_m0PDG/is_5_3/ai_n13457679/ -
- May 28, 2011 at 10:32 am
BRAF is both a Oncoprotein over expression and a group of DNA mutations. It appears in 50-60 of general melanomas, but cn be mutually exclusive with some types of melanoma mutations such as c-kit mutations. Different drugs are being tested to determine which of the mutations each will attack. One company that tests for their drug says that you aare not BRAF positive if you have a different BRAF mutation than the one they want to test against. If told one is BRAF negative, one needs to know exactly what they were tested for and against. One may be BRAF positive for a different mutation than what they tested for. To date there are no long term results available, but short term results have been astounding for many that have the mutation they want for a test. I have read that statistically speaking, about 50% have further growth after about year. Does this mean that 50% don’t? Even a year delay can get one closer to what might be something that will at least make their case a chronic condition not an immediately catastrophic one.
There is much work also going on as to what secondary signaling paths may need to be concurently attacked for longer term success. -
- May 26, 2011 at 11:37 pm
Hi Michelle,
So sorry about your husband's diagnosis. It is so scary and makes life so uncertain. The weird thing about my husband's cancer is that he seems fine other than he tires easily and has lost so much weight. It sounds like your husband is so much worse. What is BRAF positive? I am very close to retirement and all my husband and I have talked about is how we will spend our retirement years. Shudder to think I may spend them alone. I try not to think that way but sometimes, it's hard not to. We have a wonderful Dr. and facility that we go to in Detroit MI so we are so blessed with that. Where do you live? Do you have children? Please keep in touch I enjoy sharing with you and I hope you feel the same way. The very best to you and your husband. Please keep me posted on how you both are doing.
Debby
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- May 26, 2011 at 1:06 am
Deb, I am right there with you. I am the primary caregiver for my husband who was diagnosed with melanoma in his right underarm lymph nodes April 1st and only found out for sure he was Stage IV on May 6th. Don's melanoma has spread very quickly, now located in bones in pelvis, spine, ribs, as well as liver and lungs.
We just found out today that he is BRAF positive, so he is getting the rest of the qualifying tests done and we hope he will start treatment next week. Up until now, he's had no treatment other than pain management.
It's insane how quickly your life turns upside down and inside out, isn't it? Do you also have children?
Michelle, wife of Don, Stage IV
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- May 26, 2011 at 1:22 am
Right there with you too. My husband was diagnosed Stage IV last June ( with soft tissue and bone mets) and since then we've been through 2 types of treatment and are 7 weeks into the 3rd. He is BRAF positive and currently on the PLX 4032 crossover trial.
No kids, but we're trying to get pregnant now. It's a whole new reality of living day by day, week by week….
It's tough to relate to people not in this situation and very hard for them to relate to us I find.
I've found I'm stronger than i ever thought possible and at the same time can burst into tears at the drop of a hat.
Where are you located?
Em
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- May 26, 2011 at 11:43 pm
Hi Em,
Thank you for your reply. You sound very young because of trying to have children. That must make this cancer thing even more scary. I was wondering what the PLX 4032 crossover was. My husband has just taken his first series of IL-2 and actually did pretty well considering some of the stories you read. There is so much out there to learn so it is nice to have a network where everyone is sharing the same interest and journey.
Hope you are having a good week. My husband has been off work for seven weeks now and plans to return on May 31. I have been working full time and caring for him. He is such a wonderful man, I try not to get down while caring for him but sometimes it's hard to do that.
Enjoy your Memorial Day weekend.
Debbu
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- May 26, 2011 at 11:43 pm
Hi Em,
Thank you for your reply. You sound very young because of trying to have children. That must make this cancer thing even more scary. I was wondering what the PLX 4032 crossover was. My husband has just taken his first series of IL-2 and actually did pretty well considering some of the stories you read. There is so much out there to learn so it is nice to have a network where everyone is sharing the same interest and journey.
Hope you are having a good week. My husband has been off work for seven weeks now and plans to return on May 31. I have been working full time and caring for him. He is such a wonderful man, I try not to get down while caring for him but sometimes it's hard to do that.
Enjoy your Memorial Day weekend.
Debbu
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- May 26, 2011 at 1:22 am
Right there with you too. My husband was diagnosed Stage IV last June ( with soft tissue and bone mets) and since then we've been through 2 types of treatment and are 7 weeks into the 3rd. He is BRAF positive and currently on the PLX 4032 crossover trial.
No kids, but we're trying to get pregnant now. It's a whole new reality of living day by day, week by week….
It's tough to relate to people not in this situation and very hard for them to relate to us I find.
I've found I'm stronger than i ever thought possible and at the same time can burst into tears at the drop of a hat.
Where are you located?
Em
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- May 26, 2011 at 1:45 am
First I want to say I'm so sorry you are here. I'm so sorry another person has to be dealing with this.
My husband was "upgraded" to stage IV in July of last year. 10 days after the birth of our baby boy. Everything you're going through now…I've been there. I found the waiting part to be the worst. I'll keep you and your husband in my prayers.
Hugs to you both.
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- May 26, 2011 at 1:45 am
First I want to say I'm so sorry you are here. I'm so sorry another person has to be dealing with this.
My husband was "upgraded" to stage IV in July of last year. 10 days after the birth of our baby boy. Everything you're going through now…I've been there. I found the waiting part to be the worst. I'll keep you and your husband in my prayers.
Hugs to you both.
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- May 26, 2011 at 11:48 pm
Thank you so much. I hope your journey is going well. It is such a roller coaster ride that you don't ask to go on. How is your husband being treated for the cancer? Praying for you too and hope you are doing well.
I have a grown daughter age 32 who blessed us with 3 beautiful granddaughters. My husband and I have been married for almost 12 years and it has been wonderful. The thought of not being together growing old and all that is not what I wish I had to think about right now.
Keep in touch it was so nice to hear from you.
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- May 26, 2011 at 11:48 pm
Thank you so much. I hope your journey is going well. It is such a roller coaster ride that you don't ask to go on. How is your husband being treated for the cancer? Praying for you too and hope you are doing well.
I have a grown daughter age 32 who blessed us with 3 beautiful granddaughters. My husband and I have been married for almost 12 years and it has been wonderful. The thought of not being together growing old and all that is not what I wish I had to think about right now.
Keep in touch it was so nice to hear from you.
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- May 26, 2011 at 10:44 am
Being a caregiver can certainly be a difficult challenge, especially when dealing with a
spouse who has been given a stage IV diagnosis. I found that one problem was that other
people found it really difficult to accept what was happening. They just assumed that if
someone looks reasonably ok, then there is nothing much to worry about and that they will
soon be feeling better.I had the attitude that one should hope for the best while trying to be prepared for the
worst. Therefore, I tried to keep relatives and friends informed of the facts without
being alarmist and this wasn't easy.The people in this forum are outstanding in supporting anyone who needs assistance. So,
please don't hesitate to ask questions and to raise issues of concern.Best wishes
Frank from Australia
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- May 26, 2011 at 10:44 am
Being a caregiver can certainly be a difficult challenge, especially when dealing with a
spouse who has been given a stage IV diagnosis. I found that one problem was that other
people found it really difficult to accept what was happening. They just assumed that if
someone looks reasonably ok, then there is nothing much to worry about and that they will
soon be feeling better.I had the attitude that one should hope for the best while trying to be prepared for the
worst. Therefore, I tried to keep relatives and friends informed of the facts without
being alarmist and this wasn't easy.The people in this forum are outstanding in supporting anyone who needs assistance. So,
please don't hesitate to ask questions and to raise issues of concern.Best wishes
Frank from Australia
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- May 26, 2011 at 3:41 pm
Hi Bev
I was diagnosed stage 4 in my right lung in April after having a MM removed from my right ear in 2006. Had the lesion surgically removed and no further tratment recommended at this stage as therre was no evidence of it having spread. Whikle this is good news, the probability remauins that it could re-emerge in another organ at some later stage – maybe even some years down the line.
I am SO lucky becuse mine was rather restricted soI cannot even begin to think of how this must be effecting. I am freaking out with my own condition.
Everyone on this board are so wonderful and encouraging, I am sure you will find a lot of solace in their comforting words because all have been affected by this scourge in one way or another.
Take it one day at a time, be possitive and have faith. You will beat it, I am sure.
God bless, Wally
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- May 26, 2011 at 3:41 pm
Hi Bev
I was diagnosed stage 4 in my right lung in April after having a MM removed from my right ear in 2006. Had the lesion surgically removed and no further tratment recommended at this stage as therre was no evidence of it having spread. Whikle this is good news, the probability remauins that it could re-emerge in another organ at some later stage – maybe even some years down the line.
I am SO lucky becuse mine was rather restricted soI cannot even begin to think of how this must be effecting. I am freaking out with my own condition.
Everyone on this board are so wonderful and encouraging, I am sure you will find a lot of solace in their comforting words because all have been affected by this scourge in one way or another.
Take it one day at a time, be possitive and have faith. You will beat it, I am sure.
God bless, Wally
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- May 26, 2011 at 5:10 pm
Glad to talk most anytime I'm available. Yes this disease is scary. It certainly changes our lives and priorities. Yiu are not alone! After bing misdinosed for 3 1/2 years, I have had 49 bgs of IL-2. It slowed things down for 2 years. until other treatment became available. Jane's tip sheet is aboslutely great, (as is Jane). I know what statistics show for melanoma stage IV patients. That's for the ones that didn't make it. I'm not a statistic. Many here have shown me that knowledge of what is going on in this field with Melanoma specialists does indeed help one. While I know that I can be gone anytiime, I also know that I may be here for years, dispite having been told that I would have major breathing problems before the end of March 2007. if you would like to talk telephonically, I can provide my phone number to you.
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- May 27, 2011 at 12:31 am
Hi Jerry,
I think you provided me with some information on IL-2 treatments before when I posted. Your information was helpful. My husband actually did rather well with his first series of treatments with minimul side effects. Shedding skin and fluid retention were what he suffered with most. He has also lost weight. We have to wait until June 21st for the results of the treatment from scans taken on June 17th. If you could see my husband he does not even appear ill. I am glad for that but am so afraid of when he may or may not show symptoms of his disease.
Where are you located? I live in MI. We are getting way too much rain right now. We need some sunshine to help us out with the scare of cancer we have beeen given.
Take care and who is Jane<
Debby
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- May 28, 2011 at 9:58 am
Who is Jane? Sometimes I wonder that too! (She’s fun for me to pick on.) She is a good looking gal with a great attitude that likes to help people. I have spend hours on the phone with her both before I started the Il’2 and since I’ve had it. The following URL is a recent post by this wonderful lady. She is NED for 4 years now thinks to IL-2. She still has the normal concerns and tension built ups before her scans, but is doing great.
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/waving-hello-stage-iv-stretching-towards-5-years-cThe OperationSunscreen.org Site appears to no longer be operational, but a revision to it now seems to be at:
http://melanomaresources.info/jane.html#homenotes(I’ve got to get that gal on the phone again!)
I was the first MPIP’er I know of to start using the hospital wi-fi thru out my treatment week to bas along my experiences. It is also good to watch DVD’s on (in case you want to sleep to something other than what is on the TV.)
Just be careful about going horseback riding on a poorly trained horse. (http://www.melanoma.org/community/off-topic-forum/jerryfauq)
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- May 28, 2011 at 10:13 am
PS. I live in Northern Virginia but am a native Floridian. -
- May 28, 2011 at 10:13 am
PS. I live in Northern Virginia but am a native Floridian. -
- May 28, 2011 at 9:58 am
Who is Jane? Sometimes I wonder that too! (She’s fun for me to pick on.) She is a good looking gal with a great attitude that likes to help people. I have spend hours on the phone with her both before I started the Il’2 and since I’ve had it. The following URL is a recent post by this wonderful lady. She is NED for 4 years now thinks to IL-2. She still has the normal concerns and tension built ups before her scans, but is doing great.
http://www.melanoma.org/community/mpip-melanoma-patients-information-page/waving-hello-stage-iv-stretching-towards-5-years-cThe OperationSunscreen.org Site appears to no longer be operational, but a revision to it now seems to be at:
http://melanomaresources.info/jane.html#homenotes(I’ve got to get that gal on the phone again!)
I was the first MPIP’er I know of to start using the hospital wi-fi thru out my treatment week to bas along my experiences. It is also good to watch DVD’s on (in case you want to sleep to something other than what is on the TV.)
Just be careful about going horseback riding on a poorly trained horse. (http://www.melanoma.org/community/off-topic-forum/jerryfauq)
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- May 27, 2011 at 12:31 am
Hi Jerry,
I think you provided me with some information on IL-2 treatments before when I posted. Your information was helpful. My husband actually did rather well with his first series of treatments with minimul side effects. Shedding skin and fluid retention were what he suffered with most. He has also lost weight. We have to wait until June 21st for the results of the treatment from scans taken on June 17th. If you could see my husband he does not even appear ill. I am glad for that but am so afraid of when he may or may not show symptoms of his disease.
Where are you located? I live in MI. We are getting way too much rain right now. We need some sunshine to help us out with the scare of cancer we have beeen given.
Take care and who is Jane<
Debby
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- May 26, 2011 at 5:10 pm
Glad to talk most anytime I'm available. Yes this disease is scary. It certainly changes our lives and priorities. Yiu are not alone! After bing misdinosed for 3 1/2 years, I have had 49 bgs of IL-2. It slowed things down for 2 years. until other treatment became available. Jane's tip sheet is aboslutely great, (as is Jane). I know what statistics show for melanoma stage IV patients. That's for the ones that didn't make it. I'm not a statistic. Many here have shown me that knowledge of what is going on in this field with Melanoma specialists does indeed help one. While I know that I can be gone anytiime, I also know that I may be here for years, dispite having been told that I would have major breathing problems before the end of March 2007. if you would like to talk telephonically, I can provide my phone number to you.
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