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November 15, 2012 at 1:45 am #20772
Hi . I am new to the list, have nodular melanoma stage 111 A, living in Winnipeg, Canada.
Today I met with a medical oncologist for the first time to talk about the way forward after 2 surgeries this summer plus removal of the primary nodule on my back.
Interferon is an option but I am feeling that there is little positive for all those side effects and for what it may offer. There is a trial starting here for Vemurafenib for which I may be eligible; Yes, I could well find myself in the control group but there seems little else. Have any of you had experience of this medication…..or of trials, this is all new to me. The little I have read so far seems more promising than Interferon. Thanks.November 15, 2012 at 4:16 am #57569Shirley ZParticipant
Hopefully you will here from some of the people here that are on Zelboraf. If you browse through the forums you can read some of the stories.
I have been stage IIIC for 6 yrs now. One recur at the 3 yr mark and NED since. I chose the watch and wait approach which is also a viable option. Many do not feeling comfortable with it but I felt confident with my choice and still do.
Its getting late, if you want more info you can look up my history.
I know this is a very difficult time. 6 yrs ago my only choice was interferon or watch and wait. There are more options now and the research has come a long way.
Good Luck to you whatever you decide.
Shirley ZNovember 15, 2012 at 5:35 am #57570denisem0725Participant
I don’t know how helpful my story will be but I will share it with you. My grandmother is 77 years old. She has stage four melanoma. She has had no previous treatment aside from removal of the initial site on her left inner thigh and two surgeries to remove lymphnodes. Her last petscan three months ago showed widespread metastatic melanoma. She started zelboraf a week and a half ago. She was very very sick by the time we actually got the medicine. Was hospitalized for six days due to elevated liver numbers. The medicine came on a Friday, all that week all I could do was hope she would hold on until it got here. I truely believe she was on deaths door. The zelboraf has been a miracle for my family. We have not had our first follow up yet, but her visable tumors have shrunk by at least half, some more. This is of course only what I can see, but I know if we had not gotten the zelboraf when we did she would not be here now. She is not well yet because she was so sick, but she is on her way up. I cant believe how fast it worked. I know this is not the result everybody has, and I don’t know how long it will last, but for us it was definitely the right choice. Also so far her side effects have been minimal. Mostly achy legs and fatigue.November 15, 2012 at 5:37 am #57571denisem0725Participant
I hope that whatever you choose it works as well for you as this appears to be working for us.
DeniseNovember 15, 2012 at 12:41 pm #57572Catherine PooleKeymaster
Thank you for sharing your story. I do hope the Zelboraf continues to work for your grandmother and she is back in the saddle soon. It does work quickly and interesting they are trying it out in stage III. I am a big believer that these trials will teach us a lot!November 21, 2012 at 10:34 pm #57573
Thanks Shirley, I appreciated reading your story, your watch and wait approach with such positivity.
I am so glad for your grandmother too, Denise, thanks for sharing that story, it is encouraging to hear someone can improve so dramatically. I so hope she is able to maintain it.
Yesterday I said no to Interferon and decided to go ahead with the trial using Zelboraf. I will meet the oncologist again next week to know more but I am always open to any information from anyone here. Apparently the trial using Zelboraf opened here in Winnipeg at Cancer Care just a couple of weeks ago so it is very timely. However, I have a way to go to find myself receiving drug. I know nothing more about the trial but will keep you informed. Somewhere I did see a list of suggested questions to ask when one is going on a trial, amongst all the info I have tried to absorb in the last few weeks I cannot remember where it was. Any ideas? Thanks.November 29, 2012 at 5:03 am #57574
I write again about the trial as I saw the oncologist and research nurse today. Catherine, you asked for more specifics and I can give them to you but I,too,can’t find it on clinical trials.gov The information I have is that it is a “Phase 111, Randomized, Double Blind, Placebo-Controlled Study of Vemurafenib (RO518426) Adjuvant Therapy in Patients with Surgically Resected, Cutaneous BRAF-Mutant Melanoma at High Risk for Recurrence”
“The purpose is to find out if Vemurafenib can help prevent or delay the return of melanoma that has high risk of returning (Stage 11C, 111A,111B or 111C).” It is more specific later in the document which I could also quote.
I have no idea what a small or large trial is, this one will enrol 725 patients who have cutaneous melanoma that has been removed and who have BRAF gene mutation. There are 150 research sites in up to 30 countries.
There are 24 pages of documentation and Ray and I must have spent well over an hour with the research nurse. I found the questions on this website helpful and I really appreciated having someone to discuss it with who had time. It is Roche who is sponsoring it.
I wondered if there are any others who read this who maybe eligible, or if anyone else is already participating?
Apparently those on the placebo can receive the drug following the trial…..is this normal?
If you have any comments I would welcome them, this all feels very new. I will sleep on it tonight, but my sense is to go ahead. There is nothing to lose and all to gain.November 29, 2012 at 7:45 am #57575abdormaParticipant
I am a little late in responding, but here is my two cents to share. My husband initially was diagnosed with Stage IIIB melanoma in March 2011 (nodular melanoma on trunk). He had two occurrences of metases (I can never spell that correctly) —a lymph node in his thoracic region and a mass in lung surgically removed in January 2012 — and a single axillary lymph node surgically removed in May 2012. His mid-August 2012 PET scan showed “widespread metastic disease” with multiple lesions (seven on his spine alone, so many in his lungs they couldn’t count them), several lymph nodes throughout his chest, abdomen and pelvis areas. His oncologist immediately put him on Vemurafenib and within six weeks he had a fantastic response: tumor load reduced by 90 percent and the three remaining “spots” decreased in size. We return on Friday this week for another PET scan to see if the wonder drug is still working.
My husband’s side effects at times have been significant: a rash so severe that he was taken off the drug for 11 days; joint pain, fatigue, diarhea, twice ran a fever of 101-102.5 F every day for two weeks leaving him with no enery or appetite and feeling really lousy. For the last three weeks, he has had only minor side effects that don’t last. As someone else mentioned, if you search this forum (I would try Zelboraf side effects), you will get many posts of folks on the Stage IV forum sharing their experiences.
I am assuming by the title of the clinical trial, that you are currently free of disease. If everyone in the trial is NED, I think the side effects may be minimal. My husband’s oncologist immediately said upon seeing his rash 10 days after he started the Vemurafenib, “I think this means it is working.” She said patients with side effects usually have good results (I am paraphrasing her). So maybe you would have a pretty normal life on the drug.
It is a tough decision to make. When my husband’s melanoma metasicized, he chose to have surgery instead of trying Ipi as a systemic treatment. We thought we were staying ahead of Melanmoma by cutting it out but we were very wrong — if Vemurafenib can give you extended time without a recurrence, I say go for it. But be prepared for side effects that really do negatively affect the quality of life. You are truly going to be a pioneer on this one and I salute you for bravely making this decision. Ah, but if we all had a crystal ball, it would be so much easier to make decisions.
I wish you great results with whatever you choose to do, Ruth!
AnnDecember 6, 2012 at 9:14 pm #57576
Thanks Ann for your thoughtful response. I imagine by now your husband has the results of the PET scan. I do so hope it was good news for you both.
Having agreed to go on the clinical trial for Zelboraf (Vemurafenib) last Friday and gone through all the papers etc, I have just had a phone call from the nurse who says they can’t meet the deadlines. I knew it had to be 70 days between the date of my last surgery and start of the trial and that it would be tight. They are continuing to find out if I am BRAF positive. Perhaps this will open the door to other trials. At present Roche won’t accommodate an extension. It feels a little like the down stretch of a roller coaster.
I am not sure of the way forward, I am not seeing any options outside the wait and see approach and that is viable too. I will also try to see if there are any other clinical trials here in WinnipegJanuary 31, 2013 at 2:52 pm #57577DianeParticipant
I am IIIA and in a similar position to you.I’m trying to decide on which therapy to pursue. I am being treated in Toronto at Sunnybrook. My last surgery was at the end of November for a axillary lymph node dissection – 24 nodes removed and none positive. Weighing the pros and cons of interferon had me leaning towards watchful waiting right from the outset. Then I heard about the clinical trial for vemurafenib and indicated to my oncologist my desire to participate. Unfortunately the trial has not yet opened at any of the 3 sites in Ontario and I learned yesterday that it isn’t expected to for another 3-4 weeks. My 70 days are up Feb. 7. It seems that I too am out of luck – never mind that I don’t know if I was even a candidate since I have not been tested for the BRAF mutation.
Now I need to make the call to cancel my first week of appointments for high dose inteferon (scheduled as a plan but somehow I’m reluctant to make that call.
Given that the clinical trial is not an option for me, I’m back to struggling with my decision.
What did you decide?January 31, 2013 at 7:55 pm #57578ThandsterParticipant
It is #7 on this list of trials. I have been plannin to ask my onc. about this. Good luck with it and keep us informed how it goes for you.January 31, 2013 at 8:14 pm #57579Catherine PooleKeymaster Thanks for this post, it is very helpful. Sometimes these trials are very hard to find!February 25, 2013 at 6:00 pm #57580MikeCParticipant Hello all
First time on this forum. I have Stage IIIc and on the 18th Jan has a neck and ancillary dissection to have 48 lymph nodes removed. 5 were postive. I also have the + BRAF protein and have been offered a place on a vemurafenib trial here in the UK. I have kept off the internet since being diganosed before Christmas as it was all too much to cope with. 5 weeks down the line I am healing OK but feel a bit in limbo. To join the trial or wait and see etc. I would love to hear from any Stage III’s who are on the trial. interesting that GSK have announced their own Stage III trail as well.
I’m 51, a dad, non-smoker and consided myself fit. Take care all Mike.February 25, 2013 at 6:21 pm #57581LinnyParticipant
Sorry you’ve had to join us. This is a great board with lots of nice folks participating.
Like you, I was diagnosed just before Christmas back in 2010. To top things off, my birthday falls at the end of December, so it was a pretty dark time for me. I also read as little as possible on the Internet because most of the stuff about melanoma and cancer was too much for me to handle. I’m better now, but back then things were pretty rough.
It’s good that you were tested for BRAF. There are plenty of Stage IV patients who have had good results with it. It’s exciting to see a Stage III person take part in a trial for it.
Shirley, who’s a Stage IIIc warrior, should be chiming in soon. Her story is one of inspiration.
Mike you’ll be surprised what you’ll be able to do when you recover from your surgery. There’s no need to use the term “fit” in the past tense.February 25, 2013 at 7:47 pm #57582AnonymousGuest
IMO, I would seriously consider taking part in the trial. There simply is not much out there for you stage III folks other than Interferon with its ugly side effects. And if you’re willing to tollerate the ugly side effects for little to no benefit, why not go for the vemurafenib where there have been dramatic results at the stage IV level.
My point is to stay ahead of this disease as far as possible, stay at stage III and avoid stage IV. This may be a good shot for you guys to nip off any cells that may be circulating before they can take root and grow.
I hope this helps.
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