› Forums › General Melanoma Community › Results of first scans on BRAF / MEK
- This topic has 21 replies, 6 voices, and was last updated 9 years, 11 months ago by
tcell.
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- May 27, 2014 at 8:16 am
Hi,
I couldn't post this earlier as I had to celebrate with friends and family but wanted to give all of you some good news and hope!
For those of you who don't know me (I have not published my story in my profile) I am a stage IV newcomer, dx in early Feb of this year, amost died in hospital as my mel was dicovered pretty late but with god's help and some luck survived and was put on the GSK combo right away as I am BRAF+. Tumor burden would not allow waiting for Ipi to kick in. I am 35 years old and father of a 2 year old daughter.
I am being treated at Vienna university hosptial (Austria) by a group of people specialized in mel.
Had 2 large mets on liver, one on left adrenal gland,, lots of small mets on pleura and and peritoneal, one on the left lung, 2 bone mets (TH-10, hip bone).
After 3 months of combo with full dosage, no side effects I got the results of the first CT scans last Friday:
– peritoneal and lungs are clear
– all other mets on vital organs show considerable shrinkage (no idea why there is no percentage in the report)
– bone mets are stableGoing ahead with BRAF / MEK. hoping and praying that they will keep doing such a great job for a while. Anti-PD1 might become available in Europe outside of trials in fall of this year but I hope to be able to stay on BRAF / MEk for longer!
Aside from the meds I have changed my diet completely to mainly vegetables and fish, meat only exceptionally. I am taking vitamin d and k as supplements.
I often read in posts in this forum "My husband is on BRAF / MEK now which should keep him going for 10 months"!"
I cannot say how long it is going to be fine for me but I am really actively trying to avoid to let the statistic median value enter my mind that strongly! My oncologist told me of people who have been on Dab only for more than 2 years and still going! I am aiming for the best not for the average!I know that immunotherapy can be much more long-lived than the inhibitors but do not underestimate what they can do for you. For me they have saved my life!
All the best,
Chris
- Replies
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- May 27, 2014 at 4:15 pm
Chris,
That is great news.
I had the shock of stage IV Melanoma in January. Had many tumors in both lungs and liver. Had tumor on other organs and it was moving fast. Brain at that time was clear.
I started Dabrafenib/IPI combo trial mid February.
April 14 I had my first set of scans after treatment and tumors on "other organs" were not detected and the small ones in my lungs and liver were not detectable with all of the larger tumors shrinking substantially.
The Dabrafenib really turned stopped and reversed the progression with amazing results to lower the tumor burdon for the IPI.
I finished my last of the 4 IPI about 3 weeks ago and go in for a checkup next week. I won't have scans for another 5 weeks.
I'm feeling physically great and feel very positive about my long term situation.
Great to hear about your good news.
Charlie
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- May 27, 2014 at 5:13 pm
HI Charlie,
thanks for your response. It is always good to know that there are people on the same good track as yourself (although there is nobody I would want to get this desease at all)!
I was discussing the option of trying Ipi together or almost together with BRAF / MEK too. I learnt, however, that there is considerable risk of high liver toxicitiy. Do you know anything about this? Any problems for you? Do you know about how the trial is going for other patients?
How are they going to measure the success or failure of Ipi if you take Dab at the same time?
Sorry for being so curious but I am just trying to find out about my options.
Hope that everything continues like that for you!
Take care,
Chris
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- May 28, 2014 at 2:10 am
Chris, when Zelboraf (vermurafenib) and Yervoy were first FDA approved they did a clinical trial to combine them. The trial was terminated early because of significant liver toxicity. I don't know if Tafinlar (dabrafenib) plus Yervoy would have the same limitation.
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- May 28, 2014 at 2:10 am
Chris, when Zelboraf (vermurafenib) and Yervoy were first FDA approved they did a clinical trial to combine them. The trial was terminated early because of significant liver toxicity. I don't know if Tafinlar (dabrafenib) plus Yervoy would have the same limitation.
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- May 28, 2014 at 2:10 am
Chris, when Zelboraf (vermurafenib) and Yervoy were first FDA approved they did a clinical trial to combine them. The trial was terminated early because of significant liver toxicity. I don't know if Tafinlar (dabrafenib) plus Yervoy would have the same limitation.
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- May 27, 2014 at 5:13 pm
HI Charlie,
thanks for your response. It is always good to know that there are people on the same good track as yourself (although there is nobody I would want to get this desease at all)!
I was discussing the option of trying Ipi together or almost together with BRAF / MEK too. I learnt, however, that there is considerable risk of high liver toxicitiy. Do you know anything about this? Any problems for you? Do you know about how the trial is going for other patients?
How are they going to measure the success or failure of Ipi if you take Dab at the same time?
Sorry for being so curious but I am just trying to find out about my options.
Hope that everything continues like that for you!
Take care,
Chris
-
- May 27, 2014 at 5:13 pm
HI Charlie,
thanks for your response. It is always good to know that there are people on the same good track as yourself (although there is nobody I would want to get this desease at all)!
I was discussing the option of trying Ipi together or almost together with BRAF / MEK too. I learnt, however, that there is considerable risk of high liver toxicitiy. Do you know anything about this? Any problems for you? Do you know about how the trial is going for other patients?
How are they going to measure the success or failure of Ipi if you take Dab at the same time?
Sorry for being so curious but I am just trying to find out about my options.
Hope that everything continues like that for you!
Take care,
Chris
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- May 27, 2014 at 4:15 pm
Chris,
That is great news.
I had the shock of stage IV Melanoma in January. Had many tumors in both lungs and liver. Had tumor on other organs and it was moving fast. Brain at that time was clear.
I started Dabrafenib/IPI combo trial mid February.
April 14 I had my first set of scans after treatment and tumors on "other organs" were not detected and the small ones in my lungs and liver were not detectable with all of the larger tumors shrinking substantially.
The Dabrafenib really turned stopped and reversed the progression with amazing results to lower the tumor burdon for the IPI.
I finished my last of the 4 IPI about 3 weeks ago and go in for a checkup next week. I won't have scans for another 5 weeks.
I'm feeling physically great and feel very positive about my long term situation.
Great to hear about your good news.
Charlie
-
- May 27, 2014 at 4:15 pm
Chris,
That is great news.
I had the shock of stage IV Melanoma in January. Had many tumors in both lungs and liver. Had tumor on other organs and it was moving fast. Brain at that time was clear.
I started Dabrafenib/IPI combo trial mid February.
April 14 I had my first set of scans after treatment and tumors on "other organs" were not detected and the small ones in my lungs and liver were not detectable with all of the larger tumors shrinking substantially.
The Dabrafenib really turned stopped and reversed the progression with amazing results to lower the tumor burdon for the IPI.
I finished my last of the 4 IPI about 3 weeks ago and go in for a checkup next week. I won't have scans for another 5 weeks.
I'm feeling physically great and feel very positive about my long term situation.
Great to hear about your good news.
Charlie
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- May 27, 2014 at 6:42 pm
Great news Chris and Charlie. Very happy for both of you.
I really haven't posted my good results from a few weeks ago but I thought we could turn this into the thread of hope. I started my sequential Nivo-Ipi-Nivo trial last August. My two mets showed pretty good reduction after the first round of Nivo but after 3 of 4 infusions of Ipi the tumors were stable or slightly larger with numerous new mets in my right lung. Other worrisome scans followed but my latest scans from a couple weeks ago show that the lung mets have completely resolved and my two original mets have begun to shrink again. I'm clearly a responder to Nivo. Will probably never know if I'm an Ipi responder.. If all goes well I will continue on the 3mg/kg of Nivo every 2 weeks until Aug of 2015.
Brian
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- May 27, 2014 at 6:42 pm
Great news Chris and Charlie. Very happy for both of you.
I really haven't posted my good results from a few weeks ago but I thought we could turn this into the thread of hope. I started my sequential Nivo-Ipi-Nivo trial last August. My two mets showed pretty good reduction after the first round of Nivo but after 3 of 4 infusions of Ipi the tumors were stable or slightly larger with numerous new mets in my right lung. Other worrisome scans followed but my latest scans from a couple weeks ago show that the lung mets have completely resolved and my two original mets have begun to shrink again. I'm clearly a responder to Nivo. Will probably never know if I'm an Ipi responder.. If all goes well I will continue on the 3mg/kg of Nivo every 2 weeks until Aug of 2015.
Brian
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- May 27, 2014 at 6:42 pm
Great news Chris and Charlie. Very happy for both of you.
I really haven't posted my good results from a few weeks ago but I thought we could turn this into the thread of hope. I started my sequential Nivo-Ipi-Nivo trial last August. My two mets showed pretty good reduction after the first round of Nivo but after 3 of 4 infusions of Ipi the tumors were stable or slightly larger with numerous new mets in my right lung. Other worrisome scans followed but my latest scans from a couple weeks ago show that the lung mets have completely resolved and my two original mets have begun to shrink again. I'm clearly a responder to Nivo. Will probably never know if I'm an Ipi responder.. If all goes well I will continue on the 3mg/kg of Nivo every 2 weeks until Aug of 2015.
Brian
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- May 28, 2014 at 7:28 am
Brian,
great news from you too! Very happy to hear you are doing fine and responding well to Nivo. Guess that is must also be a big relief that you most likely don't have to worry for more than a year what other treatment options could be needed!
I will keep you in my prayers and hope that this is a long-term response!!!
C
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- May 28, 2014 at 7:28 am
Brian,
great news from you too! Very happy to hear you are doing fine and responding well to Nivo. Guess that is must also be a big relief that you most likely don't have to worry for more than a year what other treatment options could be needed!
I will keep you in my prayers and hope that this is a long-term response!!!
C
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- May 28, 2014 at 7:28 am
Brian,
great news from you too! Very happy to hear you are doing fine and responding well to Nivo. Guess that is must also be a big relief that you most likely don't have to worry for more than a year what other treatment options could be needed!
I will keep you in my prayers and hope that this is a long-term response!!!
C
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