› Forums › Cutaneous Melanoma Community › scan results after IL-2 not so good
- This topic has 87 replies, 16 voices, and was last updated 13 years, 4 months ago by
TracyR.
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- July 3, 2012 at 12:52 am
I have opened this site a dozen times in the last week, thinking I would share, but found it too difficult. It is no fun reading bad news, and it is not fun spreading it.
I have opened this site a dozen times in the last week, thinking I would share, but found it too difficult. It is no fun reading bad news, and it is not fun spreading it.
I was diagnosed stage IV in January. We had a scan last October (three months before) that was clean. By January there were about a dozen subcutaneous lesions, two spots in the liver, and three in the bones. We radiated 2 of the bone lesions immediately (one time high dose radiation) and started high dose IL-2 the next week. The first scan looked great, many subqs gone and bone and liver improving. The second showed improvements in bone and liver, many subqs gone, but new ones popped up. We did the last dose of IL-2. It again shrank many subqs (I could feel them melt as I was in the hospital, very cool). We waited a month to scan. I really wanted to have all trials available in deciding my next step.
The scans last week showed the liver and bone mets improved (they weren't lighting up at all on the PET), all the old subqs gone, but new ones (lots of them) popping up. No organ involvement except the brain. And major involvement there. 25 small brain mets. Have you ever heard of that? Popping up since April? It seems pretty extreme.
So. That pretty much kicks me out of trials. Surgery is not an option. Can't radiate individual mets yet, as they are not big enough. Could do whole brain radiation, but mostly we are just hoping that we can get a systemic response out of IPI, as I had a good immune response from the IL-2.
Started IPI Wed., and also Temodar. Scan again in 6 weeks and will see if any of the tumors get big enough to radiate (at the rate they grow under my skin, I'm thinking that won't be too hard).
I hate this disease.
But I love that we options now that we didn't have a couple of years ago. I love that melanoma is getting so much attention in the oncology world and that the things that are coming out are actually working.
Thanks for all the support I find from this bulletin board! Keep up the good fights!
ali
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- July 3, 2012 at 1:49 am
Hang in ther Ali, and keep fighting! It’s never too late to fight.
Praying for you,Nancy
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- July 3, 2012 at 1:56 am
Keep beleiving Ali.Sure the results are not what we really hoped for but like you say there are options out there that are working.Just have to find the one that works for you,Will keep you in my prayers.You keep up the good fight. Al
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- July 3, 2012 at 1:56 am
Keep beleiving Ali.Sure the results are not what we really hoped for but like you say there are options out there that are working.Just have to find the one that works for you,Will keep you in my prayers.You keep up the good fight. Al
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- July 3, 2012 at 1:56 am
Keep beleiving Ali.Sure the results are not what we really hoped for but like you say there are options out there that are working.Just have to find the one that works for you,Will keep you in my prayers.You keep up the good fight. Al
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- July 3, 2012 at 3:32 am
Ali,
You and your beautiful family are in my thoughts and prayers. My son (Stage 4 in February) has 3 children, too. I hate this disease…it's so unfair that so many have to suffer. However, I believe many folks on this forum have had a good response with Temodar, and I hope your next scans are good. I'm praying for you. God bless.
Bridgette (Jeff's Mom)
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- July 3, 2012 at 3:32 am
Ali,
You and your beautiful family are in my thoughts and prayers. My son (Stage 4 in February) has 3 children, too. I hate this disease…it's so unfair that so many have to suffer. However, I believe many folks on this forum have had a good response with Temodar, and I hope your next scans are good. I'm praying for you. God bless.
Bridgette (Jeff's Mom)
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- July 3, 2012 at 3:32 am
Ali,
You and your beautiful family are in my thoughts and prayers. My son (Stage 4 in February) has 3 children, too. I hate this disease…it's so unfair that so many have to suffer. However, I believe many folks on this forum have had a good response with Temodar, and I hope your next scans are good. I'm praying for you. God bless.
Bridgette (Jeff's Mom)
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- July 3, 2012 at 3:36 am
Ali,
I know it really sucks that this came up on your scans…esp everything you just went through w IL therapy. I remember reading your posts as you were going through treatment. I had a similar experience w/ my brother. He had a clear pET in Oct. 2011, then all of a sudden in 2/2012…his next PET was Crazy…mets lung, bone, abdominal nodes and a mass….You are right it is crazy. melanoma is a beast !!!!! i m glad you are on temodor and you don't know what will happen on your next scans. I can't tell you how many pt's have one scan bad and the next its different. You need to fight and remember "spots" may just stay the same and not cause issues……You may have spots that the IL is attacking and it may change on next scan….Pleae keep us posted.
Susan R. NY
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- July 3, 2012 at 3:36 am
Ali,
I know it really sucks that this came up on your scans…esp everything you just went through w IL therapy. I remember reading your posts as you were going through treatment. I had a similar experience w/ my brother. He had a clear pET in Oct. 2011, then all of a sudden in 2/2012…his next PET was Crazy…mets lung, bone, abdominal nodes and a mass….You are right it is crazy. melanoma is a beast !!!!! i m glad you are on temodor and you don't know what will happen on your next scans. I can't tell you how many pt's have one scan bad and the next its different. You need to fight and remember "spots" may just stay the same and not cause issues……You may have spots that the IL is attacking and it may change on next scan….Pleae keep us posted.
Susan R. NY
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- July 3, 2012 at 3:36 am
Ali,
I know it really sucks that this came up on your scans…esp everything you just went through w IL therapy. I remember reading your posts as you were going through treatment. I had a similar experience w/ my brother. He had a clear pET in Oct. 2011, then all of a sudden in 2/2012…his next PET was Crazy…mets lung, bone, abdominal nodes and a mass….You are right it is crazy. melanoma is a beast !!!!! i m glad you are on temodor and you don't know what will happen on your next scans. I can't tell you how many pt's have one scan bad and the next its different. You need to fight and remember "spots" may just stay the same and not cause issues……You may have spots that the IL is attacking and it may change on next scan….Pleae keep us posted.
Susan R. NY
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- July 3, 2012 at 3:38 am
Ali, As I have mentioned to you before on this site, I read your blog, and was so devastated with your news of brain mets when you first posted. I know it was your biggest worry, it’s crazy how melanoma makes us face our greatest fears head on! I understand firsthand because my husband developed brain mets the end of September, had a craniotomy in October, and finished WBR in November. I never in a million years would have thought we would be functioning normally since then, getting our young children thru another school year together, taking them on vacations (we are headed to cape cod this week), taking them to baseball games (we have Yankee/red sox tickets), taking them to the drive in movies, and riding bikes with them. My husband enjoys every single minute with them,he is so aware of the preciousness of just being with them,he is so grateful for the stability we have been able to maintain. Just like you, we loved your blog on your recent vacation, and how your boys and fun were front and center and how you gave melanoma nothing during that trip.We are well aware of the fragile nature of living with stage IV melanoma, especially when brain mets are involved. Our lives could be turned upside down again on our next scan, but we have faith that we can enjoy our present, and hope that we can continue to fight this formidable enemy. Please keep fighting, day to day, enjoy your boys,
and know we are praying for you too. Phil was able to get stable enough for a clinical trial, it can happen, have faith. Good luck with Ipi
and temodar, hoping it kicks melanoma to the curb! God bless, Valerie (Phil’s wife ) -
- July 3, 2012 at 3:38 am
Ali, As I have mentioned to you before on this site, I read your blog, and was so devastated with your news of brain mets when you first posted. I know it was your biggest worry, it’s crazy how melanoma makes us face our greatest fears head on! I understand firsthand because my husband developed brain mets the end of September, had a craniotomy in October, and finished WBR in November. I never in a million years would have thought we would be functioning normally since then, getting our young children thru another school year together, taking them on vacations (we are headed to cape cod this week), taking them to baseball games (we have Yankee/red sox tickets), taking them to the drive in movies, and riding bikes with them. My husband enjoys every single minute with them,he is so aware of the preciousness of just being with them,he is so grateful for the stability we have been able to maintain. Just like you, we loved your blog on your recent vacation, and how your boys and fun were front and center and how you gave melanoma nothing during that trip.We are well aware of the fragile nature of living with stage IV melanoma, especially when brain mets are involved. Our lives could be turned upside down again on our next scan, but we have faith that we can enjoy our present, and hope that we can continue to fight this formidable enemy. Please keep fighting, day to day, enjoy your boys,
and know we are praying for you too. Phil was able to get stable enough for a clinical trial, it can happen, have faith. Good luck with Ipi
and temodar, hoping it kicks melanoma to the curb! God bless, Valerie (Phil’s wife ) -
- July 3, 2012 at 3:38 am
Ali, As I have mentioned to you before on this site, I read your blog, and was so devastated with your news of brain mets when you first posted. I know it was your biggest worry, it’s crazy how melanoma makes us face our greatest fears head on! I understand firsthand because my husband developed brain mets the end of September, had a craniotomy in October, and finished WBR in November. I never in a million years would have thought we would be functioning normally since then, getting our young children thru another school year together, taking them on vacations (we are headed to cape cod this week), taking them to baseball games (we have Yankee/red sox tickets), taking them to the drive in movies, and riding bikes with them. My husband enjoys every single minute with them,he is so aware of the preciousness of just being with them,he is so grateful for the stability we have been able to maintain. Just like you, we loved your blog on your recent vacation, and how your boys and fun were front and center and how you gave melanoma nothing during that trip.We are well aware of the fragile nature of living with stage IV melanoma, especially when brain mets are involved. Our lives could be turned upside down again on our next scan, but we have faith that we can enjoy our present, and hope that we can continue to fight this formidable enemy. Please keep fighting, day to day, enjoy your boys,
and know we are praying for you too. Phil was able to get stable enough for a clinical trial, it can happen, have faith. Good luck with Ipi
and temodar, hoping it kicks melanoma to the curb! God bless, Valerie (Phil’s wife )-
- July 4, 2012 at 4:32 am
Valerie, thank you for these sweet words. I love this message! Very inspiring! It's true, you can function somehow with this in the background. You have to with young children. Somehow. I hope Phils trial works for him, and your adventures continue for years and years.
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- July 4, 2012 at 4:32 am
Valerie, thank you for these sweet words. I love this message! Very inspiring! It's true, you can function somehow with this in the background. You have to with young children. Somehow. I hope Phils trial works for him, and your adventures continue for years and years.
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- July 4, 2012 at 4:32 am
Valerie, thank you for these sweet words. I love this message! Very inspiring! It's true, you can function somehow with this in the background. You have to with young children. Somehow. I hope Phils trial works for him, and your adventures continue for years and years.
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- July 3, 2012 at 5:56 am
Ali,
I'm sorry you have hit a fork in the road. Sending you positive thoughts and prayers. Stay strong!
–Amy
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- July 3, 2012 at 5:56 am
Ali,
I'm sorry you have hit a fork in the road. Sending you positive thoughts and prayers. Stay strong!
–Amy
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- July 3, 2012 at 5:56 am
Ali,
I'm sorry you have hit a fork in the road. Sending you positive thoughts and prayers. Stay strong!
–Amy
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- July 3, 2012 at 12:10 pm
ali,
After reading you post, I recalled some research papers stating that at the stage IV, the body produces more tregs. With the addition of IL-2, timing plays a critical role in the immune response. If IL-2 is added at the time the CD-4 are differentiating (Growth phase) the Tregs are exprssing high levels of IL-10, This Treg growth can shut down the response because now you have more suppresive factors/protiens , (CTLA-4,PD-1 and IL-10) to deal with. These factors make the Melanoma invisible to your immune system allowing the cancer to spread flurish. Yevoy will shut down one of these factors (CTLA-4) wh..
If you have the oppertunity to try Anti-PD1, I would jump at the chance.
Best regards
Jim
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- July 3, 2012 at 12:10 pm
ali,
After reading you post, I recalled some research papers stating that at the stage IV, the body produces more tregs. With the addition of IL-2, timing plays a critical role in the immune response. If IL-2 is added at the time the CD-4 are differentiating (Growth phase) the Tregs are exprssing high levels of IL-10, This Treg growth can shut down the response because now you have more suppresive factors/protiens , (CTLA-4,PD-1 and IL-10) to deal with. These factors make the Melanoma invisible to your immune system allowing the cancer to spread flurish. Yevoy will shut down one of these factors (CTLA-4) wh..
If you have the oppertunity to try Anti-PD1, I would jump at the chance.
Best regards
Jim
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- July 3, 2012 at 12:10 pm
ali,
After reading you post, I recalled some research papers stating that at the stage IV, the body produces more tregs. With the addition of IL-2, timing plays a critical role in the immune response. If IL-2 is added at the time the CD-4 are differentiating (Growth phase) the Tregs are exprssing high levels of IL-10, This Treg growth can shut down the response because now you have more suppresive factors/protiens , (CTLA-4,PD-1 and IL-10) to deal with. These factors make the Melanoma invisible to your immune system allowing the cancer to spread flurish. Yevoy will shut down one of these factors (CTLA-4) wh..
If you have the oppertunity to try Anti-PD1, I would jump at the chance.
Best regards
Jim
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- July 4, 2012 at 4:39 am
Jim, thank you, I have read your words on this board over and over. I don't understand the physiology totally, but it makes sense (does that make any sense?). I am hoping for this reaction exactly. My Dr. wants to get on an Anti-PD1 trial as soon as I can qualify (I think that means stable disease in the brain). Keep the info coming, I really appreciate it!
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- July 4, 2012 at 4:39 am
Jim, thank you, I have read your words on this board over and over. I don't understand the physiology totally, but it makes sense (does that make any sense?). I am hoping for this reaction exactly. My Dr. wants to get on an Anti-PD1 trial as soon as I can qualify (I think that means stable disease in the brain). Keep the info coming, I really appreciate it!
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- July 4, 2012 at 4:39 am
Jim, thank you, I have read your words on this board over and over. I don't understand the physiology totally, but it makes sense (does that make any sense?). I am hoping for this reaction exactly. My Dr. wants to get on an Anti-PD1 trial as soon as I can qualify (I think that means stable disease in the brain). Keep the info coming, I really appreciate it!
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- July 3, 2012 at 12:20 pm
Hi Ali,
Reading your post reminds me how much I also hate this disease. Unfortunately I lost my wife about a year and a half ago. The fact that you had a partial response to IL-2 and now starting Ipi may lead to a good systemic response. The 2 do sometimes have a synergistic effect. Please stay on top of things and be aggressive in pursuing your treatment options. I'm hoping and praying you get ahead of this disease.
Mike
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- July 3, 2012 at 12:20 pm
Hi Ali,
Reading your post reminds me how much I also hate this disease. Unfortunately I lost my wife about a year and a half ago. The fact that you had a partial response to IL-2 and now starting Ipi may lead to a good systemic response. The 2 do sometimes have a synergistic effect. Please stay on top of things and be aggressive in pursuing your treatment options. I'm hoping and praying you get ahead of this disease.
Mike
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- July 3, 2012 at 12:20 pm
Hi Ali,
Reading your post reminds me how much I also hate this disease. Unfortunately I lost my wife about a year and a half ago. The fact that you had a partial response to IL-2 and now starting Ipi may lead to a good systemic response. The 2 do sometimes have a synergistic effect. Please stay on top of things and be aggressive in pursuing your treatment options. I'm hoping and praying you get ahead of this disease.
Mike
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- July 3, 2012 at 1:36 pm
Ali,
I just wanted to give you some hope. A fellow mel patient at the clinic where Dave is seen also had a partial response to the IL-2, then switched to IPI. As of right now, I believe she is NED.
They also had studies showing that Temodar after IL-2 showed an increased response. Since both IPI and Temodar have shown to be effective in the brain, it sounds to me like you have all of your bases covered.
Hoping for all the best for you…
Maria
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- July 3, 2012 at 1:36 pm
Ali,
I just wanted to give you some hope. A fellow mel patient at the clinic where Dave is seen also had a partial response to the IL-2, then switched to IPI. As of right now, I believe she is NED.
They also had studies showing that Temodar after IL-2 showed an increased response. Since both IPI and Temodar have shown to be effective in the brain, it sounds to me like you have all of your bases covered.
Hoping for all the best for you…
Maria
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- July 3, 2012 at 1:36 pm
Ali,
I just wanted to give you some hope. A fellow mel patient at the clinic where Dave is seen also had a partial response to the IL-2, then switched to IPI. As of right now, I believe she is NED.
They also had studies showing that Temodar after IL-2 showed an increased response. Since both IPI and Temodar have shown to be effective in the brain, it sounds to me like you have all of your bases covered.
Hoping for all the best for you…
Maria
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- July 5, 2012 at 11:09 pm
I hope you can as well! I have been stage 4 NED for over 2 years!!! I am so blessed to be in this trial…it actually is 2 1/2 years long. I did 24 weeks with Anti-PD-1- MDX 1106 (BMS-936558) every other week along with 6 peptide injections every other week…and now I am in the booster phase doing only an IV of the Anti-PD-1 once every 3 months. No serious side effects like Ipi ( Yervoy)..I do have burned out thyroid but I am on Synthroid and its really a walk in the park compared to everything else that is showing promise.I love Moffitt, I love Dr Weber and I love my treatment team!!
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- July 5, 2012 at 11:09 pm
I hope you can as well! I have been stage 4 NED for over 2 years!!! I am so blessed to be in this trial…it actually is 2 1/2 years long. I did 24 weeks with Anti-PD-1- MDX 1106 (BMS-936558) every other week along with 6 peptide injections every other week…and now I am in the booster phase doing only an IV of the Anti-PD-1 once every 3 months. No serious side effects like Ipi ( Yervoy)..I do have burned out thyroid but I am on Synthroid and its really a walk in the park compared to everything else that is showing promise.I love Moffitt, I love Dr Weber and I love my treatment team!!
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- July 5, 2012 at 11:09 pm
I hope you can as well! I have been stage 4 NED for over 2 years!!! I am so blessed to be in this trial…it actually is 2 1/2 years long. I did 24 weeks with Anti-PD-1- MDX 1106 (BMS-936558) every other week along with 6 peptide injections every other week…and now I am in the booster phase doing only an IV of the Anti-PD-1 once every 3 months. No serious side effects like Ipi ( Yervoy)..I do have burned out thyroid but I am on Synthroid and its really a walk in the park compared to everything else that is showing promise.I love Moffitt, I love Dr Weber and I love my treatment team!!
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- July 3, 2012 at 11:41 pm
Ali,
I read your post earlier today and haven't been able to stop thinking of you.
You are right in hating this disease – it seems to suck so much good away from us. You are also right in being hopeful in the options now available. I hope the activity of your disease and response to IL-2 means it will also rapidly respond to your current regimen.
You seem to have an amazing spirit, try to keep it up. The very best of luck with the ipi/temodar combo – may it be your solution.
Troy
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- July 3, 2012 at 11:41 pm
Ali,
I read your post earlier today and haven't been able to stop thinking of you.
You are right in hating this disease – it seems to suck so much good away from us. You are also right in being hopeful in the options now available. I hope the activity of your disease and response to IL-2 means it will also rapidly respond to your current regimen.
You seem to have an amazing spirit, try to keep it up. The very best of luck with the ipi/temodar combo – may it be your solution.
Troy
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- July 3, 2012 at 11:41 pm
Ali,
I read your post earlier today and haven't been able to stop thinking of you.
You are right in hating this disease – it seems to suck so much good away from us. You are also right in being hopeful in the options now available. I hope the activity of your disease and response to IL-2 means it will also rapidly respond to your current regimen.
You seem to have an amazing spirit, try to keep it up. The very best of luck with the ipi/temodar combo – may it be your solution.
Troy
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- July 4, 2012 at 4:07 am
As you are well aware there are no guarantees with this disease, but you seem to be following one of the better paths to follow. pulling for you, Ipi and Temodar. Want to get your next report!
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- July 4, 2012 at 4:07 am
As you are well aware there are no guarantees with this disease, but you seem to be following one of the better paths to follow. pulling for you, Ipi and Temodar. Want to get your next report!
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- July 4, 2012 at 4:07 am
As you are well aware there are no guarantees with this disease, but you seem to be following one of the better paths to follow. pulling for you, Ipi and Temodar. Want to get your next report!
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- July 5, 2012 at 6:05 pm
God Bless you Ali, keep fighting. I think all we can do is find docs we trust, work with them to make the best decision we can at the time, and keep putting one foot in front of the other. I know for a fact that Zelboraf can work quickly in the brain so i think your plan to have it waiting and go for the ipi first is a good one. -
- July 5, 2012 at 6:05 pm
God Bless you Ali, keep fighting. I think all we can do is find docs we trust, work with them to make the best decision we can at the time, and keep putting one foot in front of the other. I know for a fact that Zelboraf can work quickly in the brain so i think your plan to have it waiting and go for the ipi first is a good one. -
- July 5, 2012 at 6:05 pm
God Bless you Ali, keep fighting. I think all we can do is find docs we trust, work with them to make the best decision we can at the time, and keep putting one foot in front of the other. I know for a fact that Zelboraf can work quickly in the brain so i think your plan to have it waiting and go for the ipi first is a good one. -
- August 5, 2012 at 10:29 pm
Ali,
Sending you prayers and good wishes. I’m stage IV since early 2011. I’m currently on CT-011 anti-pd1 trial. My first scan showed 20% reduction in a soft tissue met in my pelvis. Since then I’ve been “stable” small progression without spreading. This disease can be frustrating but don’t give up. My last scan again showed a reduction in my pelvic met with slight increases in some nearby nodes. Everyone’s body is different and finding what works for you may be right around the corner!
God bless you! You are not alone in this fight! -
- August 5, 2012 at 10:29 pm
Ali,
Sending you prayers and good wishes. I’m stage IV since early 2011. I’m currently on CT-011 anti-pd1 trial. My first scan showed 20% reduction in a soft tissue met in my pelvis. Since then I’ve been “stable” small progression without spreading. This disease can be frustrating but don’t give up. My last scan again showed a reduction in my pelvic met with slight increases in some nearby nodes. Everyone’s body is different and finding what works for you may be right around the corner!
God bless you! You are not alone in this fight! -
- August 5, 2012 at 10:29 pm
Ali,
Sending you prayers and good wishes. I’m stage IV since early 2011. I’m currently on CT-011 anti-pd1 trial. My first scan showed 20% reduction in a soft tissue met in my pelvis. Since then I’ve been “stable” small progression without spreading. This disease can be frustrating but don’t give up. My last scan again showed a reduction in my pelvic met with slight increases in some nearby nodes. Everyone’s body is different and finding what works for you may be right around the corner!
God bless you! You are not alone in this fight!
Tagged: cutaneous melanoma
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