› Forums › General Melanoma Community › Responding to Treatment
- This topic has 54 replies, 20 voices, and was last updated 14 years, 1 month ago by
JuleFL.
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- October 27, 2010 at 5:24 pm
I just returned fro MD Anderson last night, and I have news to share. My 12 week scans show no disease progression, and my numerous small lung tumors are shrinking. I have one larger lung tumor, which showed some increase at 6 weeks, but has now reduced back to its baseline measurement before treatment started. I asked Dr. Hwu if I am a responder, and she said yes.
I just returned fro MD Anderson last night, and I have news to share. My 12 week scans show no disease progression, and my numerous small lung tumors are shrinking. I have one larger lung tumor, which showed some increase at 6 weeks, but has now reduced back to its baseline measurement before treatment started. I asked Dr. Hwu if I am a responder, and she said yes.
I had suspected that I might be responding after my 4th treatment because I developed significant rash and constant itch, and my one surface (leg) tumor showed a slight decrease in size and volume. I had another Ipi infusion yesterday, and am doing the Temador for 4 days beginning last night. Now I will go on "Maintainence", which means that I will go to MDA every 4 weeks instead of 3, and receive Ipi at 12 week intervals with Temador at 4 week intervals. Scans will be done at 8 week intervals instead of 6 weeks.
For those who may not know, I have been in the Ipilimumab plus Temozolomide trial at MD Anderson since August. This trial is only at MDA, and is one that is using a combination of oral chemotherapy with high dose Ipi to see if the combination will work better than either drug by itself. It appears to be working for me. I was diagnosed as Stage IV with lung mets on March 15th, 2010 – this was my initial diagnosis, and this is the only treatment I have ever received. After testing negative for the v600e gene (BRAF) at the U of Colorado and being told that I was therefore not eligible for either the Roche or GSK trials, I decided to look for other options. MDA had been highly recommended by a number of people on this board, so I decided to go to there to explore other treatment options. My experince there has been nothing short of incredible.
I cannot tell you how fortunate I feel to be sharing this information with you right now. I do not feel like I am out of the woods yet, but I think I am on the right path. I want so much to have others get treatmments that will help them, and the high level of interest in Ipi seems quite justified to me given my experience. The combination treatment I have received looks very promising, and hopefully other combination Ipi treatments will be developed that will help many others with melanoma. There are at least two others who post here who are also in this trial, and I am hoping so much that they will also show responses.
At the same time I am feeling elated about my own situation, I am very mindful of the many others in this community who are working to get treatments that will help them. From my time on this board and with this community, I always sense the presence of those who have gone before, those who are on this journey right now, and those who will be forced to travel this path in the future. I feel incredibly humbled with the knowledge that I share the company of many fallen warriors, along with the many fighting so bravely right now.
From the first time I posted here, I have been blessed to have received invaluable support and helpful information from so many of you – it has meant so much and continues to do so. Words cannot express my gratitude to be able to know so many people from around the world who make this board such a special place for patients, spouses, family, and friends. I will continue to post updates and to try to help others here in some small way, and offer information, hope, and encouragement. We have a long way to go, but there are some rays of hope emerging from the dark clouds.
Best Wishes,
Jim
- Replies
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- October 27, 2010 at 5:30 pm
Jim,
Thanks for the wonderful and heartfelt post. Congratulations!
ChristineL
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- October 27, 2010 at 5:30 pm
Jim,
Thanks for the wonderful and heartfelt post. Congratulations!
ChristineL
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- October 27, 2010 at 6:12 pm
Hi Jim – Thanks for the update. I'm in Nebraska, but being treated in Denver and have been following your posts. Your response to the trial sounds great!
I'm working with Dr. Gonzalez at Univ. of Colorado hospital and he's starting me on the BioChemotherapy this Monday. I've tried to get a sense from what they'd be doing at MD Anderson, but they won't talk with me directly unless I go there. Right now, I'm Stage IIIb, but I've had local reoccurrence at the axillary site (the armpit lymph nodes). Obviously, like everybody, I want to do what is absolutely best … but, its hard to figure that out. What was your experience at UCCC? I'm worried that Chemo now might hurt my chances of getting into a similar trial if this progresses.
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- October 27, 2010 at 6:58 pm
Hi Shari,
Have you received information and/or opinions from another Melanoma Specialist about treatment options? Clinical trial availability varies considerably from hospital to hospital. My understanding is that boichemo formulations also vary somewhat from hospital to hospital – the key ingedient for malanoma being Interluken 2 from what I can tell (along with DTIC and other chemo agents).
Have you had any genetic testing done? I am assuming you are aware of the targeted treatments (i.e. BRAF) available – not sure if you need to be Stage IV to be eligible for them. I can speak knowledgably only to Stage IV patients, but I know that the usual treament or "standard of care" for Stage III is Interferon, though you should ask other Stage IIIers about their experiences. You could ask Dr. G about this trial he has available at CU:
http://clinicaltrials.gov/ct2/show/NCT01037127
Regarding how Biochemo may affect your trial eligibility, you should ask Dr. G pointed questions about that, in my opinion. I do know that biochemo is a grueling treatment, not unlike Interferon or IL2. Dr. G would not discuss treatment options elsewhere with me, even though I asked. The trip to Houston might be worth it for you – it took me only three weeks to get in, and you could ask for the first Doc available. MDA does not do phone consultations, and you cannot blame them. You need to learn all you can, decide what is best, and take charge of the situation – that is what I did.
Chemo may or may not cause you to be excluded from a clinical trial. Some trial actually require you to have failed a "standard of care" treament before being eligible. I know it is not an easy answer to say "it depends", but that seems to be how it is. Here is my trial information:
Here is more information on my trial:
http://clinicaltrials.gov/ct2/show/NCT01119508
Hope that helps a little, and best wishes to you.
Regards,
Jim
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- October 27, 2010 at 6:58 pm
Hi Shari,
Have you received information and/or opinions from another Melanoma Specialist about treatment options? Clinical trial availability varies considerably from hospital to hospital. My understanding is that boichemo formulations also vary somewhat from hospital to hospital – the key ingedient for malanoma being Interluken 2 from what I can tell (along with DTIC and other chemo agents).
Have you had any genetic testing done? I am assuming you are aware of the targeted treatments (i.e. BRAF) available – not sure if you need to be Stage IV to be eligible for them. I can speak knowledgably only to Stage IV patients, but I know that the usual treament or "standard of care" for Stage III is Interferon, though you should ask other Stage IIIers about their experiences. You could ask Dr. G about this trial he has available at CU:
http://clinicaltrials.gov/ct2/show/NCT01037127
Regarding how Biochemo may affect your trial eligibility, you should ask Dr. G pointed questions about that, in my opinion. I do know that biochemo is a grueling treatment, not unlike Interferon or IL2. Dr. G would not discuss treatment options elsewhere with me, even though I asked. The trip to Houston might be worth it for you – it took me only three weeks to get in, and you could ask for the first Doc available. MDA does not do phone consultations, and you cannot blame them. You need to learn all you can, decide what is best, and take charge of the situation – that is what I did.
Chemo may or may not cause you to be excluded from a clinical trial. Some trial actually require you to have failed a "standard of care" treament before being eligible. I know it is not an easy answer to say "it depends", but that seems to be how it is. Here is my trial information:
Here is more information on my trial:
http://clinicaltrials.gov/ct2/show/NCT01119508
Hope that helps a little, and best wishes to you.
Regards,
Jim
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- October 27, 2010 at 6:12 pm
Hi Jim – Thanks for the update. I'm in Nebraska, but being treated in Denver and have been following your posts. Your response to the trial sounds great!
I'm working with Dr. Gonzalez at Univ. of Colorado hospital and he's starting me on the BioChemotherapy this Monday. I've tried to get a sense from what they'd be doing at MD Anderson, but they won't talk with me directly unless I go there. Right now, I'm Stage IIIb, but I've had local reoccurrence at the axillary site (the armpit lymph nodes). Obviously, like everybody, I want to do what is absolutely best … but, its hard to figure that out. What was your experience at UCCC? I'm worried that Chemo now might hurt my chances of getting into a similar trial if this progresses.
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- October 27, 2010 at 6:25 pm
Hi Jim,
Thanks for sharing the news. I fully understand the mixed feelings about posting the news. I had my 90th week clinic visit yesterday (high dose ipi). My nurse practitioner confirmed my believe that my rash was actually more active than it was at the last few clinics. We get treated and scanned every 12 weeks with just a clinic visit and sometimes bloodwork at the 6 week interval.
Jerry from Cape Cod
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- October 27, 2010 at 7:06 pm
Hi Jerry,
Thanks for the post. Do you know how many who were enrolled at your site are still participating in your trial? There were 82 in your trial at MDA. When did your rash begin – how long have you had it? Is it worse, the same, or better over time? How about itching? Have you had any other side effects besides the vitiligo? You were on the first "Compassionate Use" trial that had the high dose (10 mg/kg), which is different that the current formulation (3mg/kg), just so other readers know. The lower dose was shown in previous trials to be almost as effective, with fewer side effects.
Best Wishes,
Jim
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- October 27, 2010 at 10:28 pm
There were only 62 enrollees system wide. Due to privacy rules my docs won't disclose the number they are treating on this specific trial.
Your mistaken about my trial also, I'm not in either of the Compassionate use trials. I'm in the "brain trial" arm with no steroids. Rash was first noticed in week 4 had it on and off since then. Was the most sever between week 10 to around 24. I'm so used to it know I hardly pay attention to it. Level of itch varies. manage with benedryl.
Side effects to date, not necessarily in order of appearance.
Rash, vitiligo, thyroid, testosterone, some mild GI effects, White (not gray) Hair occurred over a 10 day period. Fatigue and mild flu like symptoms after infusion. I think I've covered them all, at least the significant ones.
Jerry from Cape Cod
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- October 27, 2010 at 10:28 pm
There were only 62 enrollees system wide. Due to privacy rules my docs won't disclose the number they are treating on this specific trial.
Your mistaken about my trial also, I'm not in either of the Compassionate use trials. I'm in the "brain trial" arm with no steroids. Rash was first noticed in week 4 had it on and off since then. Was the most sever between week 10 to around 24. I'm so used to it know I hardly pay attention to it. Level of itch varies. manage with benedryl.
Side effects to date, not necessarily in order of appearance.
Rash, vitiligo, thyroid, testosterone, some mild GI effects, White (not gray) Hair occurred over a 10 day period. Fatigue and mild flu like symptoms after infusion. I think I've covered them all, at least the significant ones.
Jerry from Cape Cod
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- October 28, 2010 at 1:53 am
Jerry,
Thanks for correcting my misinformation about in which trial you are participating. Thanks for the info on what your side effects hae been. I remember the hair coloration change – the beard looks good on you too.
Best Wishes,
Jim
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- October 28, 2010 at 1:53 am
Jerry,
Thanks for correcting my misinformation about in which trial you are participating. Thanks for the info on what your side effects hae been. I remember the hair coloration change – the beard looks good on you too.
Best Wishes,
Jim
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- October 27, 2010 at 7:06 pm
Hi Jerry,
Thanks for the post. Do you know how many who were enrolled at your site are still participating in your trial? There were 82 in your trial at MDA. When did your rash begin – how long have you had it? Is it worse, the same, or better over time? How about itching? Have you had any other side effects besides the vitiligo? You were on the first "Compassionate Use" trial that had the high dose (10 mg/kg), which is different that the current formulation (3mg/kg), just so other readers know. The lower dose was shown in previous trials to be almost as effective, with fewer side effects.
Best Wishes,
Jim
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- October 27, 2010 at 6:25 pm
Hi Jim,
Thanks for sharing the news. I fully understand the mixed feelings about posting the news. I had my 90th week clinic visit yesterday (high dose ipi). My nurse practitioner confirmed my believe that my rash was actually more active than it was at the last few clinics. We get treated and scanned every 12 weeks with just a clinic visit and sometimes bloodwork at the 6 week interval.
Jerry from Cape Cod
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- October 27, 2010 at 8:31 pm
Jim,
I am so happy that the tumors are showing a response! I so hope this continues for you.
It is difficult to express how delighted you are when the board has had such bad news lately, however, that also gives hope that is needed so badly for others. I personally truly needed your good news today!!
Sending joyful hugs your way,
Linda
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- October 27, 2010 at 8:53 pm
Congratulations! You should share your good news. Of course, I wish everyone reading this can share good news someday soon.
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- October 27, 2010 at 8:53 pm
Congratulations! You should share your good news. Of course, I wish everyone reading this can share good news someday soon.
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- October 27, 2010 at 8:31 pm
Jim,
I am so happy that the tumors are showing a response! I so hope this continues for you.
It is difficult to express how delighted you are when the board has had such bad news lately, however, that also gives hope that is needed so badly for others. I personally truly needed your good news today!!
Sending joyful hugs your way,
Linda
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- October 27, 2010 at 9:20 pm
What great news Jim, i hope your success continues.
best wishes
James
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- October 27, 2010 at 9:20 pm
What great news Jim, i hope your success continues.
best wishes
James
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- October 27, 2010 at 9:45 pm
Jim, Contrats!!!!
You have shifted your immune system from tolarance to activation.
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- October 27, 2010 at 9:45 pm
Jim, Contrats!!!!
You have shifted your immune system from tolarance to activation.
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- October 27, 2010 at 10:01 pm
"My 12 week scans show no disease progression," small tumors shrinking
~Jim In Denver~
12 weeks = 84 days Close to where I predicted the Tumor shrinkage would begin if you are a responder.
Now if you don't get a complete response, then go to HD IL-2. This may do the trick.
Jim ….CONGRATS!!!!!!! I wish you well my friend. You are on the road to recovery.
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- October 27, 2010 at 10:01 pm
"My 12 week scans show no disease progression," small tumors shrinking
~Jim In Denver~
12 weeks = 84 days Close to where I predicted the Tumor shrinkage would begin if you are a responder.
Now if you don't get a complete response, then go to HD IL-2. This may do the trick.
Jim ….CONGRATS!!!!!!! I wish you well my friend. You are on the road to recovery.
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- October 27, 2010 at 10:14 pm
Jim,
it is possible that the combination of Anti-CTLA-4 and Temozolomide helped shed the tumor-specific antigen, along with
Anti-CTLA-4 surpressing the Treg Fucntion and causing the T helper Cells to differentiate into Th17 cells which secreted
IL-17 and Chemoattractants to recruit and activate T-cells,DCs, Neutrophils, Macrophage and others to the tumor bed.
The begining of an Immune response.
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- October 27, 2010 at 10:14 pm
Jim,
it is possible that the combination of Anti-CTLA-4 and Temozolomide helped shed the tumor-specific antigen, along with
Anti-CTLA-4 surpressing the Treg Fucntion and causing the T helper Cells to differentiate into Th17 cells which secreted
IL-17 and Chemoattractants to recruit and activate T-cells,DCs, Neutrophils, Macrophage and others to the tumor bed.
The begining of an Immune response.
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- October 27, 2010 at 10:55 pm
Jim, I am just so ecstatic to hear this wonderful news. I love these rays of hope, I am currently on compassionate ipi in Montreal and just had my 3rd treatment..I am praying that I too will be able to deliver a good report after my 4th treatment and scans. Your sentiments have deeply touched me. Val xx
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- October 27, 2010 at 10:55 pm
Jim, I am just so ecstatic to hear this wonderful news. I love these rays of hope, I am currently on compassionate ipi in Montreal and just had my 3rd treatment..I am praying that I too will be able to deliver a good report after my 4th treatment and scans. Your sentiments have deeply touched me. Val xx
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- October 28, 2010 at 1:55 am
Thank you all for taking the time to post, and your thoughts and prayers too 🙂
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- October 28, 2010 at 1:55 am
Thank you all for taking the time to post, and your thoughts and prayers too 🙂
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- October 28, 2010 at 2:14 am
Hi Jim,
What wonderful news! I am on ipi too (compassionate use, 3mg/kg), the same one as Val in Mtl. She's 12 days ahead of me. I'll have round 3 next Thursday. I haven't had any side effects yet, and scans will be in early December. I certainly hope to be able to post the same news as you. Congratulations!
Hugs
Sharyn, Stage IV
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- October 28, 2010 at 3:10 am
Hi Sharyn,
You and Val are very much in my thoughts and prayers, so I am really glad to hear from both of you. It can take some time for Ipi to beging to work, and it seems to go slowly – at least it did for me. I appreciate all your updates, and feel like I have come to know you (and Val too). Best wishes to my two wonderful Canadian friends and thank you for yours.
Regards,
Jim
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- October 28, 2010 at 3:10 am
Hi Sharyn,
You and Val are very much in my thoughts and prayers, so I am really glad to hear from both of you. It can take some time for Ipi to beging to work, and it seems to go slowly – at least it did for me. I appreciate all your updates, and feel like I have come to know you (and Val too). Best wishes to my two wonderful Canadian friends and thank you for yours.
Regards,
Jim
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- October 28, 2010 at 2:14 am
Hi Jim,
What wonderful news! I am on ipi too (compassionate use, 3mg/kg), the same one as Val in Mtl. She's 12 days ahead of me. I'll have round 3 next Thursday. I haven't had any side effects yet, and scans will be in early December. I certainly hope to be able to post the same news as you. Congratulations!
Hugs
Sharyn, Stage IV
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- October 30, 2010 at 12:22 am
Jim! great news!!
I've been offline for a couple of days, but I just mentioned your name a couple of days ago along with a couple of others when we were on Camano. I hadn't seen anything from you in a while.
I'm thrilled to hear this news! good on ya!
dian
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- October 30, 2010 at 12:22 am
Jim! great news!!
I've been offline for a couple of days, but I just mentioned your name a couple of days ago along with a couple of others when we were on Camano. I hadn't seen anything from you in a while.
I'm thrilled to hear this news! good on ya!
dian
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- October 30, 2010 at 3:23 am
Jim, very glad to hear your news. Dr Wen Jen Hwu is good. I have enjoyed meeting and talking with her. I also greatly enjoyed your visit to my hospital room in Colorado Springs.
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- October 30, 2010 at 3:23 am
Jim, very glad to hear your news. Dr Wen Jen Hwu is good. I have enjoyed meeting and talking with her. I also greatly enjoyed your visit to my hospital room in Colorado Springs.
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- October 30, 2010 at 6:17 am
Congratulations on your reports, what exciting news! Yahoo!
Jim your post is so heartfelt and so well expressed. I feel the same way about the board but never have the words to express it. Thank you.
With prayers and blessings,
Shelly in Switzerland
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- October 30, 2010 at 6:17 am
Congratulations on your reports, what exciting news! Yahoo!
Jim your post is so heartfelt and so well expressed. I feel the same way about the board but never have the words to express it. Thank you.
With prayers and blessings,
Shelly in Switzerland
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- October 30, 2010 at 8:09 pm
I am so happy to hear you're responding! I had hoped to do that trial but couldn't get in. I am doing ipi compassionate use. So far I've only had one dose, so maybe it will kick in for me.
Hang in there and I wish you well with the maintenace plan!
Love,
Amy
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- October 30, 2010 at 8:09 pm
I am so happy to hear you're responding! I had hoped to do that trial but couldn't get in. I am doing ipi compassionate use. So far I've only had one dose, so maybe it will kick in for me.
Hang in there and I wish you well with the maintenace plan!
Love,
Amy
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