Zelboraf and Visible Tumors

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12/25/2012 7:20pm
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Replies: 11

I am a 47 year-old man, Stage IV, two young sons, determined to do everything possible to keep myself alive.

After a year of surgeries (primary excision on scalp, neck dissection, excision of various skin lesions), my latest PET scan from last week showed the melanoma has spread to my shoulder area and back of both legs (visible bumps), along with some yet to be determined small nodules in the lungs. My oncologist has run the BRAF gene test, determined that I qualify and wants me to begin taking Zelboraf (vemurafenib) this week. The question I have is: Should I press my surgeon to remove the visible turmors as quickly as possible, or should we wait to see if the Zelboraf is working, and ideally shrinking the tumors I can see protruding through the skin?

The information in this discussion forum has been invaluable to me and I sincerely thank all those who have contributed. The journey is difficult for all of us, but can be made easier by sharing helpful stories and information not always available from the medical community.

JonathanB 

washoegal - (12/25/2012 - 8:54pm)

Hi Jonathan,

Personally, I would get any that can surgically removed done so.  However, I am sure some with more experience will weigh in.

 

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

jmmm - (12/25/2012 - 9:23pm)

Zelboraf works immediately...when my husband started it (15 months ago!!), we could feel a node in his neck. Within 5 days, it was getting smaller and within 2 weeks it was completely gone (along with everything else within a couple of months. If you're going to do Zelboraf, I wouldn't bother with the surgeries and let the Zelboraf do it's job. Have you discussed trying Yerviy/Ipi first? It's usually a good option to try with such a low tumor load, since it can take awhile to work (but if it works, it can be long term). If it doesn't work' you can always try Zelboraf. Make sure you're working with a melanoma specialist...managing the side effects of all these drugs an be tough and it's best to be with someone who has lots of experience with them. Best of luck....my husband is 39...23 months after his stage 4 diagnosis, he is currently NED! (4 surgeries, 1 full round of Yervoy and 15 months of Zelboraf). Don't give up and keep fighting!

DeniseK - (12/26/2012 - 1:01am)

Hi Jonathan,

Looks like we're in the same boat.   I was wondering that question too.  I should be starting Zelboraf this next week (hopefully).

Anyway I wanted to leave the visible tumors that I can feel so I can feel if it's working or not.  My problem now is the one on my arm I smashed yesterday and has become quite painful so I'm going to discuss removing it with the doctor tomorrow.  I think as long as they don't bother you it might be interesting to watch them go away with the Z.  My doctor said because of the other tumors it really wouldn't help to do surgeries but if they bother you then we should get them out.   Surgery is always the best course of action but that's if there's only one or two that can be removed.  I think if they bother you then have them removed but they will also alert you to when or if the Z stops working.  This is my thinking on it anyway.

Please take care and keep us posted on your journey.  I am hoping the very best to you and your family.

Merry Christmas  :)

Denise 

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

JonathanB - (12/26/2012 - 2:42am)

Denise: thanks for the comments. I tend to agree with you about leaving alone for now the two visible tumors on my leg, as they are fairly small at this point and may provide a measureable indication of Zelboraf's ability to shrink tumors. I have yet to discuss the pros/cons with my surgeon, who is normally pretty aggressive about removing what he can, but now that I will be taking Zelboraf he may have a different outlook. In general I believe that surgically removing tumors where possible is the best approach, but of course this is not always easily possible, or even practical when there get to be many. And as you may have experienced, the surgery often involves removing more than just the tumor, as many surgeons like to get margins as wide as possible and will often take out any nearby lymph nodes and sometimes tissue as well. About nine months ago, my ENT surgeon decided he wanted to "pop out" a smallish tumor on the back of my neck, which he felt would be about a 1/2 hour operation. I was a little shocked to find out afterwards that not only did he "pop out" the melanoma mass, he also made an incision clear across the back of my neck and removed a swath of tissue and who knows what else, "as a preventative measure." That one hurt for quite a while afterwards.

The good news, for both of us, is that Zelboraf has a better than average track record of stopping new tumor growth and sometimes shrinking existing ones. The hope is that the reported side effects are not too difficult to handle. If you don't have one already, ask your Doctor for the Zelboraf "Kit", which is a package of literature that comes directly from Roche, the drug's manufacturer. It's fairly informative and includes a little log book to keep track of your daily dosages and reported side effects. Apparently Roche also has a nurse on call to speak with regarding your treatment and side-effects, which could be useful.

I will post updates once I begin taking Zelboraf and let you know how things progress. It is no understatement to say I am counting on this drug to bring a halt to the tumor growth and give me some renewed hope. My fall back plan if Zelboraf doesn't work is to ask my oncologist to prescribe Yervoy/Ipi, which a second-opinion oncologist I spoke with in Seattle informed me was their clinic's first line drug to recommend, sometimes followed by Zelboraf. At my clinic, it seems to be the other way around.

I do wish you success with your treatment and hope you can let us know of your progress.

Jonathan

Swanee - (12/26/2012 - 12:08pm)

Hi Jonathon,

My journey with melanoma began about 3 years ago.  I have had a total of 15 subcutaneous tumors removed since diagnosis but only after a treatment has failed and the tumor is becoming to difficult to live with.  I feel I am always at odds with not removing them as soon as they are discovered as they are so small and easy to remove  vs. waiting for a treatment to work and if it doesn't,  then removing them.   Once they reach a certain size  they become major surgery and much more difficult and disfiguring.

I think generally speaking, melanoma typically spreads quickly and removing them is ineffective and only puts your body through additional stress trying to repair after surgery.  Also, many clinical trials need measureable disease so they have something to monitor  to see if their drug is working and also need for biopsies to prequalify you for trials or like TIL they need tissue from the tumor to grow their TIL.  I think most dr's treating stage IV patients don't want to waste time removing tumors as they don't feel that is going to be a cure and instead focus on the treatments. 

Hope this helps a little, everyone's experiences a little different than the next.  Good luck with the Z, so many encouraging stories here on this MPIP board.  Will hold positive thoughts for you that it is the one that works  and you join the coveted NED status and  leave melanoma in the past!

Best wishes,

Swanee

Anonymous - (12/26/2012 - 1:53pm)

Where is Victorialocated and where are you being treated at ?

sFELDMAN - (12/26/2012 - 5:53pm)

Let me help if I can.  I was diagnosed with Melanoma stage IV February of 2012.  I was fortunate in a couple of ways and can now report that the scans are clear.  I too was Braf positive.  I will tell you that being Braf positive is an excellent thing and will serve you well as you begin your treatment program.  I was fortunate enough to participate in a drug study with Glaxo Smith Kline and was able to begin Braf/Mek medication in March.  I know the drug study I was on has since closed but I also know two things.  There are other drug companies that followed GSK with the same drug therapy.  I also know that GSK is fast tracking the drug through FDA and I am told that the drug will be approved some time during the second quarter of 2013.  Please have these discussions with your care provider.  As you spend time on the web site you will see many folks speak about the success of Braf/Mek.  You are Braf positive, YOU WILL MAKE IT!  Be proactive!  Also one more piece of information.  Change your nutrition progarm immediately.  Eliminate all preservatives, high fructose corn syrup, white flower and white sugar.  Eat green vegetables, fruits, whole grain, matakie mushrooms and lots of turmeric spice on all foods.  Focused nutrition program will assist your immune system in fighting off the cancer.  Again, YOU WILL MAKE IT! Find out from your care provider where else in the country they are conducting a Braf/Mek drug study.  Go there and sign up today!  Feel free to contact me at any time as your journey begins.  With G-D, a supportive family, a positive attitude and excellent nutrition, you will be OK.

DeniseK - (12/26/2012 - 10:59pm)

This is the trial I was hoping to get into but found out last week I have a 12x 12mm met in my brain, I'm doing whole brain radiation starting tomorrow for 10 treatments. Hopefully this will stop the brain met and once I'm brain stable for 12 weeks I can get into another trial. My doc did say the mek inhibitor could be available by then by fda but for me its a wait and see and have to rely on fda drugs right now. Its been so long waiting for insurance issues I need to get something going. My doctor said I was remarkably healthy considering what's going on so I'm feeling confident I can make it through this. Diet changes I've already started and vitamins been taking. Cancer loves sugar I heard so I've been staying away from that. There's always hope in my heart for all of us! Ipi would be my next course of action too, my plan B.

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

sFELDMAN - (12/26/2012 - 11:15pm)

DeniseK:  Please stay strong, sounds like you are doing all of the right stuff.  Nutrition is very important.  Go after green vegetables, plenty of tumeric and mataike mushrooms.  The Braf/Mek drugs will be available second quarter of 2013 so you will be OK in just a few short months. A very stong will and faith in G-D will get you through the waiting period, I promise.  Many other drug companies are following GSK in this trial as you would expect.  There will be many other trials waiting for you as soon as the radiation is completed and successful and it will be.  I will pray for you as will many other people. Believe and all will be OK.  G-D Bless you!

JonathanB - (12/26/2012 - 11:56pm)

sFeldman: thanks for the comments and support.

Very happy to hear your scans were clear from the GSK Braf/Mek medication. I have been doing some research on the drug and will definitely bring it up with my oncologist. Did you suffer side-effects while undergoing the treament? How long did you take it for?

I couldn't agree more with your recommendation of a diet loaded with high nutrient cruciferous green vegetables, fruit, whole grains, mushrooms and turmeric. I would also add onions, leeks, garlic, etc. (the allium vegetables) and select nuts and seeds - walnuts, hazelnuts, flaxseed, etc. The hard part, for me anyway, was the elimination of refined sugars, although it does get easier as the cravings subside and you genuinely feel "full" from the abovementioned foods. I have even got my kids eating many of the foods now, although they won't go near the turmeric or spicy dishes :)

Jonathan

sFELDMAN - (12/27/2012 - 9:52am)

Jonathan B,  side effects from the Braf/Mek are minimal.  The combination drug side effects is what motivated the chemists to pursue the treatment.  I did have swollen ankles that were pretty bad but only for about 60 days.  I did get a complete body rash but for only 2 weeks.  I have had tingling in my toes/feet since beginning the drug therapy but it is very tolerable.  As for the time it begins to work, listen carefully.  I had a 5cm tumor behind my left knee when I began the therapy.  In two days I began to feel the drug work.  Yes, I could feel the area begin to hurt slightly.  I knew the drug was working.  In 8 weeks 75% of the cancer was gone!  Although this is on the high end of the success curve, they do expect significant results during the first scan. Remember success rate on this therapy is 95 to 100%.  Hope this info helps.  Keep in touch and if I can help in any way let me know.  As my Oncologist put it, spend the money on organics or spend it on kemo therapy!  G-D  Bless.