Stage3a Desperate for advice

sher4
sher4 Member Posts: 17
edited March 2014 in Skin Cancer #1
Stage3a---- Anyone know what the best treatment is for it? Doctor suggesting interferon for my 21 year old daughter. Any advice would be greatly appreciated. Has already had 2 surgeries. Cancer was in the first sentinel node only.
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Comments

  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #2
    see Leukine or Interferon
    see Leukine or Interferon post

    http://csn.cancer.org/node/186808
  • bho
    bho Member Posts: 5
    #3
    stage 3a
    Hi Sher4, I am stage 3b melanoma patient, just had my 5 yr check up, and all is good. I had one node involved as well, did the interferon treatment, 4 weeks of the big dose(actually took 8 weeks due to complications) and 7 months of the self injections, my body could not take it any longer and I quit w/out my doctors consent( I'm 6'5" & 300 lbs by the way). It was a very nasty treatment, but 5 years later I am still here. So, while there appear to be new treatments out there, this one worked for me. Hope I answered toy questions, best wishes to your daughter. Tell her to keep fighting and take it a day at a time.
  • sher4
    sher4 Member Posts: 17
    #4
    HeartofSoul said:

    see Leukine or Interferon
    see Leukine or Interferon post

    http://csn.cancer.org/node/186808

    Thanks for all your help for
    Thanks for all your help for suggesting web pages,etc. I have checked a lot of them out.
  • sher4
    sher4 Member Posts: 17
    #5
    bho said:

    stage 3a
    Hi Sher4, I am stage 3b melanoma patient, just had my 5 yr check up, and all is good. I had one node involved as well, did the interferon treatment, 4 weeks of the big dose(actually took 8 weeks due to complications) and 7 months of the self injections, my body could not take it any longer and I quit w/out my doctors consent( I'm 6'5" & 300 lbs by the way). It was a very nasty treatment, but 5 years later I am still here. So, while there appear to be new treatments out there, this one worked for me. Hope I answered toy questions, best wishes to your daughter. Tell her to keep fighting and take it a day at a time.

    Thanks for commenting.It was
    Thanks for commenting.It was comforting. HEARD BY MANY THAT IT IS NASTY!! We have had a hard time finding someone who was in the beginning of Stage3. She starts tomorrow. Her attitude is amazing and was the picture of health before all of this started. Hopefully that will benifit her. They are concerned about her weight. She is the opposite of you very petite 5'1". sO GLAD TO HEAR THINGS ARE GOING WELL FOR YOU!!!!
  • bec5656
    bec5656 Member Posts: 1
    #6
    sher4 said:

    Thanks for commenting.It was
    Thanks for commenting.It was comforting. HEARD BY MANY THAT IT IS NASTY!! We have had a hard time finding someone who was in the beginning of Stage3. She starts tomorrow. Her attitude is amazing and was the picture of health before all of this started. Hopefully that will benifit her. They are concerned about her weight. She is the opposite of you very petite 5'1". sO GLAD TO HEAR THINGS ARE GOING WELL FOR YOU!!!!

    Sher
    My son is 21 and is
    Sher
    My son is 21 and is also 3A...is on the 9 month of interferon. E-mail me if you want
    diremonger@aol.com

    Becky
  • bho
    bho Member Posts: 5
    #7
    sher4 said:

    Thanks for commenting.It was
    Thanks for commenting.It was comforting. HEARD BY MANY THAT IT IS NASTY!! We have had a hard time finding someone who was in the beginning of Stage3. She starts tomorrow. Her attitude is amazing and was the picture of health before all of this started. Hopefully that will benifit her. They are concerned about her weight. She is the opposite of you very petite 5'1". sO GLAD TO HEAR THINGS ARE GOING WELL FOR YOU!!!!

    stage 3a
    here's a tip, have a heating pad near, I had the chills so bad the first few days I could not talk, teeth just chattered, also, make sure her doc is monitoring thyroid levels, interferon killed mine. Glad she is positive, it is an important tool in this fight. Make sure she sleeps, and days I was able to get some exercise seemed to make me feel better, even if it was just a short walk.
  • mh1229
    mh1229 Member Posts: 22
    #8
    Clinical trials
    I am stage 3a. Diagnosed in Jan and just finished surgery about a month ago. Interferon was suggested and after doing my own research I decided it wasn't the best choice for me.
    I looked into clinical trials and switched doctors to get what I thought was best. I learned if a Dr does not have a certain treatment.. they will not offer it even if it is the best choice for you.
    At stage 3a watch and wait is a viable option. Interferon is toxic and there are studies that show it does not change overall survival but simply puts off a recurrance.

    Check out Melanoma International foundations forums. There is a lot of great discussions on trials and forward thinking treatment options.
  • washoegal
    washoegal Member Posts: 45
    #9
    mh1229 said:

    Clinical trials
    I am stage 3a. Diagnosed in Jan and just finished surgery about a month ago. Interferon was suggested and after doing my own research I decided it wasn't the best choice for me.
    I looked into clinical trials and switched doctors to get what I thought was best. I learned if a Dr does not have a certain treatment.. they will not offer it even if it is the best choice for you.
    At stage 3a watch and wait is a viable option. Interferon is toxic and there are studies that show it does not change overall survival but simply puts off a recurrance.

    Check out Melanoma International foundations forums. There is a lot of great discussions on trials and forward thinking treatment options.

    mh1229
    I'm a stage 3a also. Last surgery was middle march and I declined the Interferon, as it sounds like you did, in preference for the watch and wait. While my doctor sis recommend this, I'd certainly say reading between the lines, he would have recommended this watch and wait for me if he could have. One caveat though, two of my four SN had cancer but only a very small microscopic amount. And I think that makes a difference. All other lymph nodes were clear.

    We should stay in touch to see how we do!
  • Ima
    Ima Member Posts: 1
    #10
    Stage 3
    I have been injecting myself with leukine for several months after having a lymph node resection. This surgery was done one year ago, and I am very healthy. I follow the cancer free diet, and excercise. I strongly suggest the diet. My doc at Mayo Clinic feels that having fewer cells (losing weight) reduces the incidence of rogue activity. Makes sense, less cells growing, more cells shrinking.
    The way to reduce side effects that has worked for me:
    1. Make sure the meds are at room temp (out of fridge for 1/2 hour
    2. Apply ice to the site until your skin turns white (1-2 minutes)
    3. Inject slowly, remove the needle slowly
    4. Inject in the evening, and sit upright for at least 1/2 hour.
    Hope this helps.
    Be confident in your body's ability to heal. Surround yourself with positivity, avoid people and situations that stress you out. It isn't worth your time. Enjoy, we truly know the value of every day.
  • debneal
    debneal Member Posts: 2
    #11
    You Daughter
    Hi, I am wondering how your daughter is doing and what you have decided to do?
    I am only three and a half months out of Interferon treatments and opted not to continue for the year long of shots. Each day is difficult but certainly much better than the four weeks I endured. Please, feel free to contact me if you wish.
    All the best.
    Deborah
  • happydad
    happydad Member Posts: 16
    #12
    Stage 3 looking for advice
    I was also diagnosed with stage 3b. One of the complicating things for me was that they are not sure if the tumor that was removed by two surgeries last year was whether it was the primary tumor. I had something on my head that had fallen off months earlier. After the surgeries the doctors recommended interferon. As has already been shared, it is brutal; especially the four weeks of IV. I have fourteen more treatments left to complete my full year of treatment. I won't deny that it has been difficult. My doctor started me on an antidepressant about two weeks before the interferon started. My children tell me I am much more mellow!

    Try to help your daughter drink lots of water and get plenty of rest. Every person responds to the regimen differently, but those two things seem to help the most. Support from friends and family has been a very important part of my experience and has been a big help. Let people know how it is going. I have children around the age of your daughter and would not wish this experience on any of them. You will be a big part of her success.

    Take care,

    Happydad
  • mama3
    mama3 Member Posts: 1
    #13
    I know you have probably
    I know you have probably already decided since this is over a month after your requests but I just joined this website. I was diagnosed with 3a melanoma in 2007. I went all out for the most aggressive form of treatment (biochemotherapy) and almost lost the battle then because it was too toxic for me. I then went the interferon route and did the 4 weeks daily and 9 months of shots. It is horribly brutal, especially the first month, but I am now cancer free and have been in remission for over a year. At the end of my 9th month of interferon they thought it may have spread to my liver and I went to MD Anderson in Houston TX at the urging of my local oncologist. They have a wonderful melanoma center there and I would highly recommend it if you are not happy with where you are. If I have any recurrences I will definitly be going back there, they had many more treatment options available then they did where I live. It was a long way from home but worth the trip. If your daughter has any questions or just needs someone to talk to, please let me know. I found no one going through the same treatment when I did and having someone to talk to would have been nice. I will keep you in my prayers.
  • KMR
    KMR Member Posts: 2
    #14
    Intron good experience
    Hi Sher,

    I had stage 3a, declined the complete lymph node removal despite finding melanoma in 2 sentinal nodes, and opted to do the full course of Intron A just about a year ago.

    I was pleasantly surprised at how much easier it was after all the horror stories I had heard. I took 1 month off from work only because the intensive treatment is so time consuming. As soon as the first month was done, I returned to working full time and although I was often tired, was able to work without a problem. I have a very demanding job and a 6 year old, but despite doing the self injections 3 times a week, life went on pretty normally. The worst sypmtom was fatigue and then at about 4 months, my hair started thinning--handfuls coming out every time I washed it. Fortunately I have very thick hair so I'm really the only one who noticed. It is still growing back. My biggest fear prior to starting it was the statistic that 40% of Intron patients become clinically depressed. I got antidepressants in advance, just in case, but never needed them and never felt any change in my mood. There were other funky symptoms such as strange taste in mouth, stomach problems, etc, but I took it all in stride and got through.

    My oncologist said to stop at 7 months as there are studies showing 3-6 months of Intron is just as effective as 1 year. It had not at the time become an official reccomendation because the study everyone cites hadn't been published yet; maybe it has by now.

    I've heard the younger one is, the easier Intron is tolerated I was 48 at the time; also women tend to do better than men. I am 5'1" too so that isn't an issue, as I believe it is adjusted by weight. At the same time, I had a good friend at work going through breast cancer treatment and she had a much harder time with chemo than I did with Intron.
    I had decided going in that if it was awful, I would stop, but it was so much better (and I've heard others say the same) that I'm glad I didn't decide not to try it. The one positive side effect is that because it boosts your immune system, I never got so much as a cold until just recently--several months after ending treatment. Keep in mind, however, that at best, Intron only helps about 10% of users. For people who have really bad reactions, that might not be enough to suffer through. But I would definitely say it is worth a try. Good luck.
  • widge44
    widge44 Member Posts: 1
    #15
    Ima said:

    Stage 3
    I have been injecting myself with leukine for several months after having a lymph node resection. This surgery was done one year ago, and I am very healthy. I follow the cancer free diet, and excercise. I strongly suggest the diet. My doc at Mayo Clinic feels that having fewer cells (losing weight) reduces the incidence of rogue activity. Makes sense, less cells growing, more cells shrinking.
    The way to reduce side effects that has worked for me:
    1. Make sure the meds are at room temp (out of fridge for 1/2 hour
    2. Apply ice to the site until your skin turns white (1-2 minutes)
    3. Inject slowly, remove the needle slowly
    4. Inject in the evening, and sit upright for at least 1/2 hour.
    Hope this helps.
    Be confident in your body's ability to heal. Surround yourself with positivity, avoid people and situations that stress you out. It isn't worth your time. Enjoy, we truly know the value of every day.

    Cancer Free Diet
    Is the cancer free diet a book, or is it on the web? I would like to get it...
  • sher4
    sher4 Member Posts: 17
    #16
    KMR said:

    Intron good experience
    Hi Sher,

    I had stage 3a, declined the complete lymph node removal despite finding melanoma in 2 sentinal nodes, and opted to do the full course of Intron A just about a year ago.

    I was pleasantly surprised at how much easier it was after all the horror stories I had heard. I took 1 month off from work only because the intensive treatment is so time consuming. As soon as the first month was done, I returned to working full time and although I was often tired, was able to work without a problem. I have a very demanding job and a 6 year old, but despite doing the self injections 3 times a week, life went on pretty normally. The worst sypmtom was fatigue and then at about 4 months, my hair started thinning--handfuls coming out every time I washed it. Fortunately I have very thick hair so I'm really the only one who noticed. It is still growing back. My biggest fear prior to starting it was the statistic that 40% of Intron patients become clinically depressed. I got antidepressants in advance, just in case, but never needed them and never felt any change in my mood. There were other funky symptoms such as strange taste in mouth, stomach problems, etc, but I took it all in stride and got through.

    My oncologist said to stop at 7 months as there are studies showing 3-6 months of Intron is just as effective as 1 year. It had not at the time become an official reccomendation because the study everyone cites hadn't been published yet; maybe it has by now.

    I've heard the younger one is, the easier Intron is tolerated I was 48 at the time; also women tend to do better than men. I am 5'1" too so that isn't an issue, as I believe it is adjusted by weight. At the same time, I had a good friend at work going through breast cancer treatment and she had a much harder time with chemo than I did with Intron.
    I had decided going in that if it was awful, I would stop, but it was so much better (and I've heard others say the same) that I'm glad I didn't decide not to try it. The one positive side effect is that because it boosts your immune system, I never got so much as a cold until just recently--several months after ending treatment. Keep in mind, however, that at best, Intron only helps about 10% of users. For people who have really bad reactions, that might not be enough to suffer through. But I would definitely say it is worth a try. Good luck.

    Daughter completed treatments
    Daughter completed the treatments of interferon in June. Scans came out clean last week, so official in remission. Thank you for your comments. I did read earlier. My father was diagnosed with lung cancer shortly after my daughter. He lost his battle. It had been a hard year. Honestly I just got tired of talking about cancer and began to get things confused at times on which one I was talking about. My daughter did very well with the interferon. Doctors were amazed. She was able to continue with school and kept her GPA up and was on the honor roll. She was amazing and we are so proud of her for completing the injections. Hope you are still doing well also.
  • sher4
    sher4 Member Posts: 17
    #17
    mama3 said:

    I know you have probably
    I know you have probably already decided since this is over a month after your requests but I just joined this website. I was diagnosed with 3a melanoma in 2007. I went all out for the most aggressive form of treatment (biochemotherapy) and almost lost the battle then because it was too toxic for me. I then went the interferon route and did the 4 weeks daily and 9 months of shots. It is horribly brutal, especially the first month, but I am now cancer free and have been in remission for over a year. At the end of my 9th month of interferon they thought it may have spread to my liver and I went to MD Anderson in Houston TX at the urging of my local oncologist. They have a wonderful melanoma center there and I would highly recommend it if you are not happy with where you are. If I have any recurrences I will definitly be going back there, they had many more treatment options available then they did where I live. It was a long way from home but worth the trip. If your daughter has any questions or just needs someone to talk to, please let me know. I found no one going through the same treatment when I did and having someone to talk to would have been nice. I will keep you in my prayers.

    Thank you
    Thank you for taking the time to post. I did read it. You are right there are not very many people going through 3a melanoma. Many we found in stage 2 and 4. She completed the interferon program 4 weeks, then 11 months of injections. Scans came out clean last week. We were happy to hear that and hopefully it will stay that way. My daughter had a great attitude and that was the key to it along with many prayers. We live in a small community and I know she was on just about every church prayer list.I will keep in mind the place in Texas if we need more help in the future. My dad was diagnosed with lung cancer last year and lost his battle, along with keeping up with my other 3 children. It has been a rough year but I read the posts. Thank you so much for caring. Hope all is going well still for you!
  • sher4
    sher4 Member Posts: 17
    #18
    mama3 said:

    I know you have probably
    I know you have probably already decided since this is over a month after your requests but I just joined this website. I was diagnosed with 3a melanoma in 2007. I went all out for the most aggressive form of treatment (biochemotherapy) and almost lost the battle then because it was too toxic for me. I then went the interferon route and did the 4 weeks daily and 9 months of shots. It is horribly brutal, especially the first month, but I am now cancer free and have been in remission for over a year. At the end of my 9th month of interferon they thought it may have spread to my liver and I went to MD Anderson in Houston TX at the urging of my local oncologist. They have a wonderful melanoma center there and I would highly recommend it if you are not happy with where you are. If I have any recurrences I will definitly be going back there, they had many more treatment options available then they did where I live. It was a long way from home but worth the trip. If your daughter has any questions or just needs someone to talk to, please let me know. I found no one going through the same treatment when I did and having someone to talk to would have been nice. I will keep you in my prayers.

    Thank you
    Thank you for taking the time to post. I did read it. You are right there are not very many people going through 3a melanoma. Many we found in stage 2 and 4. She completed the interferon program 4 weeks, then 11 months of injections. Scans came out clean last week. We were happy to hear that and hopefully it will stay that way. My daughter had a great attitude and that was the key to it along with many prayers. We live in a small community and I know she was on just about every church prayer list.I will keep in mind the place in Texas if we need more help in the future. My dad was diagnosed with lung cancer last year and lost his battle, along with keeping up with my other 3 children. It has been a rough year but I read the posts. Thank you so much for caring. Hope all is going well still for you!
  • sher4
    sher4 Member Posts: 17
    #19
    happydad said:

    Stage 3 looking for advice
    I was also diagnosed with stage 3b. One of the complicating things for me was that they are not sure if the tumor that was removed by two surgeries last year was whether it was the primary tumor. I had something on my head that had fallen off months earlier. After the surgeries the doctors recommended interferon. As has already been shared, it is brutal; especially the four weeks of IV. I have fourteen more treatments left to complete my full year of treatment. I won't deny that it has been difficult. My doctor started me on an antidepressant about two weeks before the interferon started. My children tell me I am much more mellow!

    Try to help your daughter drink lots of water and get plenty of rest. Every person responds to the regimen differently, but those two things seem to help the most. Support from friends and family has been a very important part of my experience and has been a big help. Let people know how it is going. I have children around the age of your daughter and would not wish this experience on any of them. You will be a big part of her success.

    Take care,

    Happydad

    Scans are clean
    Thank you for your post. It was a rough year because my dad was diagnosed with lung cancer shortly after my daughter. Unfortunately he lost his battle. I did read the post, but became overwhelmed with everything. My daughter did complete the interferon. The water was the key. She was a XC runner so she had already been programed to drink water,that part was easy for her. She took ibuprofen after injecting and went to bed early along with naps whenever possible. She had a great support from her friends. Her attitude was great, so much so that her doctor wants to use her to help talk some of her other patients through it. I hope this post finds you still doing well. Thanks for caring.
  • sher4
    sher4 Member Posts: 17
    #20
    happydad said:

    Stage 3 looking for advice
    I was also diagnosed with stage 3b. One of the complicating things for me was that they are not sure if the tumor that was removed by two surgeries last year was whether it was the primary tumor. I had something on my head that had fallen off months earlier. After the surgeries the doctors recommended interferon. As has already been shared, it is brutal; especially the four weeks of IV. I have fourteen more treatments left to complete my full year of treatment. I won't deny that it has been difficult. My doctor started me on an antidepressant about two weeks before the interferon started. My children tell me I am much more mellow!

    Try to help your daughter drink lots of water and get plenty of rest. Every person responds to the regimen differently, but those two things seem to help the most. Support from friends and family has been a very important part of my experience and has been a big help. Let people know how it is going. I have children around the age of your daughter and would not wish this experience on any of them. You will be a big part of her success.

    Take care,

    Happydad

    Scans are clean
    Thank you for your post. It was a rough year because my dad was diagnosed with lung cancer shortly after my daughter. Unfortunately he lost his battle. I did read the post, but became overwhelmed with everything. My daughter did complete the interferon. The water was the key. She was a XC runner so she had already been programed to drink water,that part was easy for her. She took ibuprofen after injecting and went to bed early along with naps whenever possible. She had a great support from her friends. Her attitude was great, so much so that her doctor wants to use her to help talk some of her other patients through it. I hope this post finds you still doing well. Thanks for caring.
  • sher4
    sher4 Member Posts: 17
    #21
    happydad said:

    Stage 3 looking for advice
    I was also diagnosed with stage 3b. One of the complicating things for me was that they are not sure if the tumor that was removed by two surgeries last year was whether it was the primary tumor. I had something on my head that had fallen off months earlier. After the surgeries the doctors recommended interferon. As has already been shared, it is brutal; especially the four weeks of IV. I have fourteen more treatments left to complete my full year of treatment. I won't deny that it has been difficult. My doctor started me on an antidepressant about two weeks before the interferon started. My children tell me I am much more mellow!

    Try to help your daughter drink lots of water and get plenty of rest. Every person responds to the regimen differently, but those two things seem to help the most. Support from friends and family has been a very important part of my experience and has been a big help. Let people know how it is going. I have children around the age of your daughter and would not wish this experience on any of them. You will be a big part of her success.

    Take care,

    Happydad

    Scans are clean
    Thank you for your post. It was a rough year because my dad was diagnosed with lung cancer shortly after my daughter. Unfortunately he lost his battle. I did read the post, but became overwhelmed with everything. My daughter did complete the interferon. The water was the key. She was a XC runner so she had already been programed to drink water,that part was easy for her. She took ibuprofen after injecting and went to bed early along with naps whenever possible. She had a great support from her friends. Her attitude was great, so much so that her doctor wants to use her to help talk some of her other patients through it. I hope this post finds you still doing well. Thanks for caring.

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