› Forums › General Melanoma Community › Starting Yervoy, melanoma hormone related? what do you think about radiation?
- This topic has 15 replies, 3 voices, and was last updated 12 years, 4 months ago by
gabsound.
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- December 16, 2011 at 5:29 am
Hi,
Hi,
I finished up biochemo treatments the end of october. Unfortunately the lump at the bottom of my lymph node scar started to rapidly grow. PET/CT showed marked uptake in that region-rest of scan was clear as was brain MRI. Core biopsy of region conformed melanoma. My surgeon based on the biopsy results did agressive surgery, as if I had a sarcoma, and took large margins around this area. LARGE piece of tissue removed 20 x 10 x 5 cm on 11/25/11. Even took out some muscle. Posterior margin is questionable as to whether it is clear. My oncologist is treating me like I am a stage 4 patient since metastatic disease has ocurred twice in the leg. Plan is to start Yervoy tomorrow and will meet with radiation oncologist fairly soon.
Im wondering about a connection between estrogen and melanoma. My Oncologist seems to think there isn't one however, my initial lesion changed after I was on hormones for a while and my most recent tumor seemed to change rapidly between biochemo treatment 3 and 4 when I started using my hormone patch again. Could be coincidental, but I have asked the surgeon to have them test my tumor for estrogen sensitivity.
I'm recovering well from surgery and only took 1 week off from work. Incision seems to be healing well. I think I have some increase in lymphedema in the leg since the last surgery, but I will be getting a stronger pair of compression hose. I'm wondering how much worse my leg would get with radiation treatments.
I feel like this agressive surgery followed by the Yervoy and possible radiation is my best shot at hopefully stopping this. It's been just one thing after the next, this year. I already feel "cured" from the surgery. What a relief to not have a growing tumor in my leg. I really feel great right now and feel very positive. I'm hoping the Yervoy will be a piece of cake after doing high dose interferon and 4 inpatient biochemo treatments!
Happy holidays
Julie from Las Vegas
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- December 16, 2011 at 5:31 am
I also wanted to mention that I am BRAF and C kit negative. NRAS positive.
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- December 16, 2011 at 10:31 am
Hi Julie,
Wow, you have been through alot! I think your plan sounds good. Its one I would do. I have had leg radiation twice. The first time I ended up with 'radiation burns" on the surface of my skin..huge blisters, red skin so painful morphine didnt touch it. I ended up with cellulitis and an inflamed knee joint on top of it and they put me in the hospital for 5 days for pain control and to treat the infection and burn. The second time around no problems at all. I did get fatigued a bit more but I worked every single day of the second round of radiation (last summer). I LOVED my radiation team….they were so fantastic and kept me laughing!
Regarding the lymphadema, have you seen a lymphadema specialist (if you are cleared for this??) Also an over the counter compression stocking is probably not going to be the most helpful. You may need a custom made compression stocking like from JOBST and you need to get measured for this at a medical supply store, by someone who knows about how to do these measurements. The medical store I go to does have a better over the counter compression stocking that you can buy for about $100 but I needed the custom made ones. I have been wearing them daily now for 4 years. The cost?? $850 a stocking and my health insurance doesnt cover it, but I get them as my leg needs them. My leg feels so much better wearing the stocking. I also do self massage and have had extensive lymphadema treatment by a lymphadema specialist.
Yervoy was HIGHLY successful for me. I had relatively few side effects…some increased fatigue and some severe nausea at times and also a slight rash. Please read my profile as it has been a year now so I am forgetting all the things that affected me. My leg (and body) are doing well…no signs of melanoma now 8 months after the 4th treatment.
Please get in touch if you have any other questions that maybe I can answer!! Thinking of you!
Vermont_Donna, stage3a NED
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- December 16, 2011 at 8:59 pm
Donna,
I have been following you and am of course delighted you have had such a good response to the Yervoy. I’m hoping for the same!
I do wear perscription support stockings and saw lymphedema specialists after my first surgery. I do the massage as well. I feel like it’s been pretty well controlled. Just w new surgery have concern it could get a bit worse. Then if I do radiation could get worse again. I’ll deal with it no matter. It’s worth it to be healthy as long as possible and spend more time with my family. Actually getting 1st infusion as I am writing this. Enjoy the holidays!
Julie -
- December 16, 2011 at 8:59 pm
Donna,
I have been following you and am of course delighted you have had such a good response to the Yervoy. I’m hoping for the same!
I do wear perscription support stockings and saw lymphedema specialists after my first surgery. I do the massage as well. I feel like it’s been pretty well controlled. Just w new surgery have concern it could get a bit worse. Then if I do radiation could get worse again. I’ll deal with it no matter. It’s worth it to be healthy as long as possible and spend more time with my family. Actually getting 1st infusion as I am writing this. Enjoy the holidays!
Julie -
- December 16, 2011 at 8:59 pm
Donna,
I have been following you and am of course delighted you have had such a good response to the Yervoy. I’m hoping for the same!
I do wear perscription support stockings and saw lymphedema specialists after my first surgery. I do the massage as well. I feel like it’s been pretty well controlled. Just w new surgery have concern it could get a bit worse. Then if I do radiation could get worse again. I’ll deal with it no matter. It’s worth it to be healthy as long as possible and spend more time with my family. Actually getting 1st infusion as I am writing this. Enjoy the holidays!
Julie -
- December 16, 2011 at 10:31 am
Hi Julie,
Wow, you have been through alot! I think your plan sounds good. Its one I would do. I have had leg radiation twice. The first time I ended up with 'radiation burns" on the surface of my skin..huge blisters, red skin so painful morphine didnt touch it. I ended up with cellulitis and an inflamed knee joint on top of it and they put me in the hospital for 5 days for pain control and to treat the infection and burn. The second time around no problems at all. I did get fatigued a bit more but I worked every single day of the second round of radiation (last summer). I LOVED my radiation team….they were so fantastic and kept me laughing!
Regarding the lymphadema, have you seen a lymphadema specialist (if you are cleared for this??) Also an over the counter compression stocking is probably not going to be the most helpful. You may need a custom made compression stocking like from JOBST and you need to get measured for this at a medical supply store, by someone who knows about how to do these measurements. The medical store I go to does have a better over the counter compression stocking that you can buy for about $100 but I needed the custom made ones. I have been wearing them daily now for 4 years. The cost?? $850 a stocking and my health insurance doesnt cover it, but I get them as my leg needs them. My leg feels so much better wearing the stocking. I also do self massage and have had extensive lymphadema treatment by a lymphadema specialist.
Yervoy was HIGHLY successful for me. I had relatively few side effects…some increased fatigue and some severe nausea at times and also a slight rash. Please read my profile as it has been a year now so I am forgetting all the things that affected me. My leg (and body) are doing well…no signs of melanoma now 8 months after the 4th treatment.
Please get in touch if you have any other questions that maybe I can answer!! Thinking of you!
Vermont_Donna, stage3a NED
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- December 16, 2011 at 10:31 am
Hi Julie,
Wow, you have been through alot! I think your plan sounds good. Its one I would do. I have had leg radiation twice. The first time I ended up with 'radiation burns" on the surface of my skin..huge blisters, red skin so painful morphine didnt touch it. I ended up with cellulitis and an inflamed knee joint on top of it and they put me in the hospital for 5 days for pain control and to treat the infection and burn. The second time around no problems at all. I did get fatigued a bit more but I worked every single day of the second round of radiation (last summer). I LOVED my radiation team….they were so fantastic and kept me laughing!
Regarding the lymphadema, have you seen a lymphadema specialist (if you are cleared for this??) Also an over the counter compression stocking is probably not going to be the most helpful. You may need a custom made compression stocking like from JOBST and you need to get measured for this at a medical supply store, by someone who knows about how to do these measurements. The medical store I go to does have a better over the counter compression stocking that you can buy for about $100 but I needed the custom made ones. I have been wearing them daily now for 4 years. The cost?? $850 a stocking and my health insurance doesnt cover it, but I get them as my leg needs them. My leg feels so much better wearing the stocking. I also do self massage and have had extensive lymphadema treatment by a lymphadema specialist.
Yervoy was HIGHLY successful for me. I had relatively few side effects…some increased fatigue and some severe nausea at times and also a slight rash. Please read my profile as it has been a year now so I am forgetting all the things that affected me. My leg (and body) are doing well…no signs of melanoma now 8 months after the 4th treatment.
Please get in touch if you have any other questions that maybe I can answer!! Thinking of you!
Vermont_Donna, stage3a NED
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- December 18, 2011 at 10:33 am
Julie, I hope that Yervoy will work well for you. It should be less toxic than the
biochemo and interferon that you have had.It appears that some cancers are definitely affected by the levels of various hormones.
For more info see: http://info.cancerresearchuk.org/healthyliving/hormones/However, the link between estrogen and melanoma remains unclear at the moment. From:
http://cancerpreventionresearch.aacrjournals.org/content/early/2011/09/19/1940-6207.CAPR-11-0332.short?rss=1
"Although our results are in agreement with the hypothesis that estrogens could play a
role in melanoma occurrence, they need to be replicated in a larger study with data on
potential confounders."Best wishes
Frank from Australia
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- December 18, 2011 at 10:33 am
Julie, I hope that Yervoy will work well for you. It should be less toxic than the
biochemo and interferon that you have had.It appears that some cancers are definitely affected by the levels of various hormones.
For more info see: http://info.cancerresearchuk.org/healthyliving/hormones/However, the link between estrogen and melanoma remains unclear at the moment. From:
http://cancerpreventionresearch.aacrjournals.org/content/early/2011/09/19/1940-6207.CAPR-11-0332.short?rss=1
"Although our results are in agreement with the hypothesis that estrogens could play a
role in melanoma occurrence, they need to be replicated in a larger study with data on
potential confounders."Best wishes
Frank from Australia
-
- December 18, 2011 at 10:33 am
Julie, I hope that Yervoy will work well for you. It should be less toxic than the
biochemo and interferon that you have had.It appears that some cancers are definitely affected by the levels of various hormones.
For more info see: http://info.cancerresearchuk.org/healthyliving/hormones/However, the link between estrogen and melanoma remains unclear at the moment. From:
http://cancerpreventionresearch.aacrjournals.org/content/early/2011/09/19/1940-6207.CAPR-11-0332.short?rss=1
"Although our results are in agreement with the hypothesis that estrogens could play a
role in melanoma occurrence, they need to be replicated in a larger study with data on
potential confounders."Best wishes
Frank from Australia
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