› Forums › General Melanoma Community › Margo (melmar)-How are you doing on Merck PD1 trial?
- This topic has 12 replies, 4 voices, and was last updated 11 years, 10 months ago by
rbruce.
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- July 29, 2012 at 6:14 pm
Hi Margo,
How are you doing on the Merck trial??? Any side effects?
I think that you mentioned your second set of scans would be in July. I hope that you found no cancer & NED.
My brother, was dx 2010-stage 4. He is on this trial in San Antonio. His last scans showed 50% shrinkage on 3 tumors- 2 lung, and liver.
It is nice to share info on these trials.
Anyone else on this Merck trial??/ Please post how you are doing so we can share hope & encouage each other.
Wishing everyone the Best.
Hi Margo,
How are you doing on the Merck trial??? Any side effects?
I think that you mentioned your second set of scans would be in July. I hope that you found no cancer & NED.
My brother, was dx 2010-stage 4. He is on this trial in San Antonio. His last scans showed 50% shrinkage on 3 tumors- 2 lung, and liver.
It is nice to share info on these trials.
Anyone else on this Merck trial??/ Please post how you are doing so we can share hope & encouage each other.
Wishing everyone the Best.
Tim's Sister, Annie.
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- July 30, 2012 at 6:04 am
Thanks for checking in on me. I did have my second second of scans in July, and I still seem to be benefitting as there were no new spots and my two remaining spots (one on lung, one in back) were relatively stable. I had hoped to hear “NED” or “spots have continued to shrink”, but am learning that “stable” and “nothing new” both need to be celebrated.No major side effects other than occasional joint pain, minor fatigue (could be the travel) and gastro issues. I did end up with a pretty serious ulcer, but my doctors think it was stress related 🙂 rather than the medicine.
Biggest psychological stress for me in a while was that since starting the trial I put myself (and my relatively reluctant children) on an extremely healthy diet – green smoothies, mostly raw veges, no processed foods or starches, little meat, no alcohol, no coffee- just green tea, etc. One month prior to last scan I had to change diet back because of my ulcer. Disappointing for me as I really bought into the idea of boosting my immune system naturally to supplement the trial drugs. I wonder if my results would have been better if I had been eating better and have been kind of beating myself up over it.
More than you wanted to know, but it feels good to write about it as it has been weighing on me. Anyway ulcer is gone now and am trying to get back into the healthy eating groove. Hoping and praying that medicine and diet continue to work and that others are benefitting from their respective treatments.
Would love to hear how everyone else is doing on the Merck and other anti pd-1 trials too. Also if anyone has made dietary changes while on this or other trials that seem to be helpful.
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- July 30, 2012 at 7:56 am
I have been on BMS Anti PD-1 at Moffitt for nearly 2 years…in the booster phase now- one infusion every 3 months…2 years 4 months NED stage 4. No diet changes. I eat whatever I want…like I always did…starches, meat chicken, salads, vegetables and some fruit. I drink 2-3 pots of coffee a day. I like pies, cookies and cakes. I am doing fine..fat and sassy! I dis take alot of vitamins but have only been doing 50,000 Vit D weekly because my endocrine doc at Moffitt said I was low.
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- July 30, 2012 at 7:56 am
I have been on BMS Anti PD-1 at Moffitt for nearly 2 years…in the booster phase now- one infusion every 3 months…2 years 4 months NED stage 4. No diet changes. I eat whatever I want…like I always did…starches, meat chicken, salads, vegetables and some fruit. I drink 2-3 pots of coffee a day. I like pies, cookies and cakes. I am doing fine..fat and sassy! I dis take alot of vitamins but have only been doing 50,000 Vit D weekly because my endocrine doc at Moffitt said I was low.
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- July 30, 2012 at 7:56 am
I have been on BMS Anti PD-1 at Moffitt for nearly 2 years…in the booster phase now- one infusion every 3 months…2 years 4 months NED stage 4. No diet changes. I eat whatever I want…like I always did…starches, meat chicken, salads, vegetables and some fruit. I drink 2-3 pots of coffee a day. I like pies, cookies and cakes. I am doing fine..fat and sassy! I dis take alot of vitamins but have only been doing 50,000 Vit D weekly because my endocrine doc at Moffitt said I was low.
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- July 30, 2012 at 7:20 pm
Margo,
I am stage 4 and I have remained NED since my first 12 weeks scans. I am coming up to my 3rd set of scan in August & hope to remain NED.
For what is is worth, my diet consisits of anything I want to eat, including lots of sugary desserts. I would not beat yourself up about eating the "right things". I would focus on remaining "stress free" and eat what you want in moderation… Mixing health food with not so healthy food. Stress will do more harm to your immune system than eating something not too healthy. That's just my 2 cents.
How are other patients doing on the MERCK PD1 drug at your site location??? Any complete responders? Has anyone been a responder & now the drug is no longer/stopped working for them???
Thank you for sharing information
Candi
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- July 30, 2012 at 7:20 pm
Margo,
I am stage 4 and I have remained NED since my first 12 weeks scans. I am coming up to my 3rd set of scan in August & hope to remain NED.
For what is is worth, my diet consisits of anything I want to eat, including lots of sugary desserts. I would not beat yourself up about eating the "right things". I would focus on remaining "stress free" and eat what you want in moderation… Mixing health food with not so healthy food. Stress will do more harm to your immune system than eating something not too healthy. That's just my 2 cents.
How are other patients doing on the MERCK PD1 drug at your site location??? Any complete responders? Has anyone been a responder & now the drug is no longer/stopped working for them???
Thank you for sharing information
Candi
-
- July 30, 2012 at 7:20 pm
Margo,
I am stage 4 and I have remained NED since my first 12 weeks scans. I am coming up to my 3rd set of scan in August & hope to remain NED.
For what is is worth, my diet consisits of anything I want to eat, including lots of sugary desserts. I would not beat yourself up about eating the "right things". I would focus on remaining "stress free" and eat what you want in moderation… Mixing health food with not so healthy food. Stress will do more harm to your immune system than eating something not too healthy. That's just my 2 cents.
How are other patients doing on the MERCK PD1 drug at your site location??? Any complete responders? Has anyone been a responder & now the drug is no longer/stopped working for them???
Thank you for sharing information
Candi
-
- July 30, 2012 at 6:04 am
Thanks for checking in on me. I did have my second second of scans in July, and I still seem to be benefitting as there were no new spots and my two remaining spots (one on lung, one in back) were relatively stable. I had hoped to hear “NED” or “spots have continued to shrink”, but am learning that “stable” and “nothing new” both need to be celebrated.No major side effects other than occasional joint pain, minor fatigue (could be the travel) and gastro issues. I did end up with a pretty serious ulcer, but my doctors think it was stress related 🙂 rather than the medicine.
Biggest psychological stress for me in a while was that since starting the trial I put myself (and my relatively reluctant children) on an extremely healthy diet – green smoothies, mostly raw veges, no processed foods or starches, little meat, no alcohol, no coffee- just green tea, etc. One month prior to last scan I had to change diet back because of my ulcer. Disappointing for me as I really bought into the idea of boosting my immune system naturally to supplement the trial drugs. I wonder if my results would have been better if I had been eating better and have been kind of beating myself up over it.
More than you wanted to know, but it feels good to write about it as it has been weighing on me. Anyway ulcer is gone now and am trying to get back into the healthy eating groove. Hoping and praying that medicine and diet continue to work and that others are benefitting from their respective treatments.
Would love to hear how everyone else is doing on the Merck and other anti pd-1 trials too. Also if anyone has made dietary changes while on this or other trials that seem to be helpful.
-
- July 30, 2012 at 6:04 am
Thanks for checking in on me. I did have my second second of scans in July, and I still seem to be benefitting as there were no new spots and my two remaining spots (one on lung, one in back) were relatively stable. I had hoped to hear “NED” or “spots have continued to shrink”, but am learning that “stable” and “nothing new” both need to be celebrated.No major side effects other than occasional joint pain, minor fatigue (could be the travel) and gastro issues. I did end up with a pretty serious ulcer, but my doctors think it was stress related 🙂 rather than the medicine.
Biggest psychological stress for me in a while was that since starting the trial I put myself (and my relatively reluctant children) on an extremely healthy diet – green smoothies, mostly raw veges, no processed foods or starches, little meat, no alcohol, no coffee- just green tea, etc. One month prior to last scan I had to change diet back because of my ulcer. Disappointing for me as I really bought into the idea of boosting my immune system naturally to supplement the trial drugs. I wonder if my results would have been better if I had been eating better and have been kind of beating myself up over it.
More than you wanted to know, but it feels good to write about it as it has been weighing on me. Anyway ulcer is gone now and am trying to get back into the healthy eating groove. Hoping and praying that medicine and diet continue to work and that others are benefitting from their respective treatments.
Would love to hear how everyone else is doing on the Merck and other anti pd-1 trials too. Also if anyone has made dietary changes while on this or other trials that seem to be helpful.
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- July 30, 2012 at 10:37 pm
I'm on the Merck pd1 trial at UCSF. My 12 week scans showed about a 40% reduction in tumor size in my lung timors. My lymph node and rib mets were stable. This came after no results from biochemo and pi3k trial after a year, so I'm pretty happy, to say the least. Robert
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- July 30, 2012 at 10:37 pm
I'm on the Merck pd1 trial at UCSF. My 12 week scans showed about a 40% reduction in tumor size in my lung timors. My lymph node and rib mets were stable. This came after no results from biochemo and pi3k trial after a year, so I'm pretty happy, to say the least. Robert
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- July 30, 2012 at 10:37 pm
I'm on the Merck pd1 trial at UCSF. My 12 week scans showed about a 40% reduction in tumor size in my lung timors. My lymph node and rib mets were stable. This came after no results from biochemo and pi3k trial after a year, so I'm pretty happy, to say the least. Robert
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