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July 6, 2016 at 11:48 am #22911
Some of you regular and not so regular visitors please let us know how you are doing. Negative or positive, we are here to support you and possibly make some suggestions. I hope some of you will chime in. We really do care and understand too.July 7, 2016 at 7:27 am #69195ThomvdvParticipant Good topic, i always wonder!July 8, 2016 at 3:09 am #69196WITomParticipant I continue to feel great – healthy and normal. I am now 5+ years stage 4 (widespread mets – liver/lung/gut etc) and 3.5 years NED. I was treated with ipi 10 mg with 6 infusions. The ipi nearly killed me with severe/prolonged colitis and perforated bowel but I survived with an emergency ileostomy. Now I am a complete responder and grateful beyond words. I lost a friend earlier today to cancer (not melanoma) who was diagnosed around the same time as me. He fought bravely for 5 years. In addition to feeling grateful and blessed I also feel some guilt especially on a day like today.
TomJuly 10, 2016 at 1:15 pm #69197buffcodyParticipant
Congratulations, Tom. I’m sure your friend would be/is rejoicing in your results as well. FrankJuly 10, 2016 at 7:05 pm #69198 I’ve been following this forum for a while now although I don’t post much. I’ve advanced from Stage 3c (unknown primary, 2009) to Stage IV just over 2 years ago with small mets in liver and abdomen and 2 large ones (>10 cm) around my gallbladder spleen right adrenal gland and left adrenal gland. The large ones have given me the most trouble, progressing on Ipi, Keytruda, IL2 and after a while, Braf/Mek. I was just kicked off a trial trying another inhibitor in the Braf pathway – an inhibitor of the ERK protein. It too helped for a while until scans this past week showed progression in pretty much all the mets and a couple new ones in the liver. I’m currently in a 28-day washout period, getting ready to try a trial that combines Ipi with an anti-angiogenic drug. I’m pretty discouraged though, in that 2 days after stopping the ERK inhibitor, I’m experiencing pain again in the area of the big tumors. I contacted my doctor (I’m being treated at Dana Farber) and they’re considering maybe retrying with the Braf/Mek drugs to get this under control first. I’ve looked into surgery but they don’t want to try it unless for palliative reasons. Thanks for this forum and the opportunity to post. I’ve got friends and family support but it helps to know there are others who have struggled and beat this. — Gwen in MaineJuly 10, 2016 at 11:13 pm #69199 Hi Gwen,
You are most likely in good hands there. I’m sorry to hear of the difficulties you’ve encountered. I do know of many folks who do well with the reinduction of the BRAF drugs, hope that helps you. Please let us know.July 11, 2016 at 4:22 pm #69200MathewRParticipant
Gwen, I think I “know” you from MPIP. My two cents on retreatment with BRAF-MEK. It absolutely can work. In my case, it helped keep me stable for about 5 months. I then moved to ipi-nivo (before I progressed). So far, so good on ipi-nivo.July 11, 2016 at 7:17 pm #69201 Thanks, Mat. (I think that’s you on MPIP..) I haven’t tried the combo yet so maybe they’ll suggest the Braf inhibitors again followed by the combo instead of the trial. Haven’t heard from the doctors yet today. Usually at this point the emails are flying amongst the team (I’m seeing Hodi).July 11, 2016 at 7:36 pm #69202 Hodi has a great reputation for being judicious. And so does Mat at times!July 13, 2016 at 7:37 am #69203Linda56Participant I’m doing very fine and am completely NED since a very long time.
I was diagnosed stage 4 in June 2012 with metastasis in my abdomen, lung and kidney and also had plenty of subcutaneous small tumors that looked like sebaceous glands.
In August 2012, I started with BRAF (trial Zelboraf) and in March 2014 switched over to the BRAF/MEK combo (trial Tafinlar/Mekinist).
I had many side effects on BRAF alone, but with the combo the side effects were drastically diminished.
So in August, I will be celebrating my 4th year anniversary as a melanoma survivor.July 13, 2016 at 11:29 pm #69204candi13Participant
I started MK3475(keytruda) clinical trial on 12/20/11. I was patient #4 on this trial. Cancer in both lungs, chest, legs and eventunally my brain. I was cancer free with my first 12 week scans-3/2012. My body has remained cancer free since 3/2012.However, while on the drug I got brain mets in 5/2013. I was told if I radiated the brain mets, Merck would kick me off the trials so I gambled and just stayed on Mk3475. I had an MRI every 6 weeks on my brain which kept showing the brain mets were shrinking. By in 10/2013, the brain mets were gone.
Merck told me that I was the first person to show the drug with my immune system could kill brain mets. With my Brain mets success, Merck started thinking about a clinical trial for patients with brain mets. I was told that Merck decided to go forward with brain met clinical trial at Yale which I understand presented very encouraging results from this clinical trial this year at Asco.
I had my last infusion on 8/4/2015. I have been cancer free for many years. I am still on the trial in “observation” status. I only wished that I had stopped the infusions sooner because I had side effects throughout my infusions. Also, it appears that doctors are not keeping people on the drug for up to 2 years like the clinical trial and yet people are having a long term response.
I was fighting for my life with Patti and Jonathan in 2011/2012. Jonathan & I are very lucky to be leading normal lives now but I still miss Patti and think of her and her 2 boys. May God Bless her 2 boys and watch over them.
Jeff, I also think about you and this disease taking your wife so young. I think that it is wonderful that you still support and help others on MIF
Catherine, thank you for everything you do for us and I am praying for you and your husband.
CandiJuly 14, 2016 at 5:51 am #69205msue5Participant
I realize I haven’t updated in awhile but just haven’t had the mental energy to do so. I just received 8th Nivo dose and up till now have just been fatigued. This dose the fatigue and joint pain hit me like a brick wall. I was so fatigued I could barely talk above a whisper but better now. I am getting Nivo every 3 weeks instead of every 2 to hopefully minimize autoimmune effects. PET Scan after dose 6 showed slight increase in size and SUV of 2 axillary nodes plus a new node adjacent to others. I am sure this is still pseudo progression and will move forward and next scan late August. I am still battling with Thyroid issues and weight loss. Today I made contact with Johns Hopkins Endocrinology Dept and have appt in Sept. I have been battling with this issue since July of last year. Pituitary and Adrenals are ok. Endocrinologist is baffled and useless. When I saw him last time TSH was normal and he said no need for follow up and you can stop checking Thyroid panels.Thankfully my Onc didn’t agree and last TSH was 7 with normal free T4. Restarted Synthroid at lowest dose and like last time was severely hyperthyroid after 1 week so had to stop. Today I made appt with Johns Hopkins Endocrinologist for Sept and am working on Rheumatologist appt there and also may see Oncologist Dr Lipson who ran some of the earliest trials for Yervoy. I want to make sure I should still continue Immunotherapy due to autoimmune issues with Yervoy. Weight loss still continues and all Drs are saying cancer induced but I think Thyroid is the issue. I now weigh 92 lbs down from my usual 107-110 lbs. I look like the “Walking Dead”. I eat every 2 hrs that I am awake and also have 2 Boost Compacts every day. Sick of worrying about it and Im worried I am losing muscle mass which could be irreversible. Oh well enough whining for now! Hope everyone is doing well as expected.
Mary SueJuly 14, 2016 at 12:27 pm #69206
I am so sorry to hear of your fatigue and weight loss. I wonder if you could do some physical therapy to help your muscle mass? Or possibly just use some small weights to start. You are not whining, I think you have had more complications that anyone I know and you are an inspiration in how you handle it all. I hope things improve for you. I can tell you are still giving it all of your knowledge and expertise to get answers to the complications you have encountered. I know from my grandson’s experience that autoimmune disease is a huge challenge and a lot unknown. Thinking of you!July 14, 2016 at 10:32 pm #69207msue5Participant
Don’t want to burn more calories! Seriously though I have done PT 3-4 times during my journey from hell for strengthening exercises usually before a big surgery that I know will keep me down for awhile. I was unable to do anything with Abdominal Stress but did exercises to strengthen legs. I will give that some thought. I have worked with same Physical Therapist and he is great and more importantly knows my history. Just have to catch him up each time.
Mary SueJuly 16, 2016 at 9:24 pm #69208
Hi, I thought I would post an update to my “update” since I mentioned in this thread that I was waiting to hear from my doctors. They didn’t feel offering me Braf/Mek inhibitors again was the best option right now since I had already progressed twice on these drugs and recently on the ERK inhibitor trial. They would like me to try the Ipi/Nivo combo, starting next Friday. I was hoping to keep that one in my back pocket but am glad to have something to try that doesn’t have a washout period. I’m still dealing with tumor pain. We’re also still waiting to hear from Radiation. I would be willing to go through SRS to one of the big tumors at the same time as the combo if I can potentially take advantage of the abscopal effect. Best wishes, everyone. — Gwen
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