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Melanoma and Clinical Trials

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

My husband recently discovered he has melanoma stage 3. The primary was never found but the tumor that was discovered was taken was surgically removed and all lymph nodes surrounding it (18 tested negative).

Treatments offered to my husband to choose from:
1. Interferon

2. Clinical trial, cancer vaccine made from husband's tumor protein
(3 person, 2 person on actual drug, 1 person is on placebo)
This trial in particular is called MAGE-A3 Positive Resected

3. Do nothing and wait and see approach

My question:
Do all clinical trials offered use the placebo in groups for testing measures?

washoegal
Posts: 45
Joined: May 2010

I have only seen one trial that offered two different types of drugs instead of using a placebo. That trial is somewhere in Orange County, CA. As you are considering a trial, I would also check out your insurance company policy on this. They may be OK with drug, etc but extra testing or hospitalization may not be covered.

HeartofSoul's picture
HeartofSoul
Posts: 732
Joined: Dec 2009

Look into a drug called PLX4032, now in late-stage clinical trials. It is designed to target tumor cells with a mutation in a gene called BRAF. The drug is made by Roche and privately held Plexxikon. Call Roche and Plexxikon for where trials are

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

HeartofSoul,

Thanks for responding, I have heard of the drug you mention but my husband's tumor has been removed. My question was about clinical trials and placebos... are they always used?

Keep up the good work, love all your info and postings.

Deb

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

Thanks Washoegal,

You bring up a good suggestion, I never thought the insurance companies would never pay for treatment... you would think anything would be fair game if there would be a chance at saving a person's life?

We will check into it.

As far as California goes we will have our limits. Jobs are important in our life and we can't mess around with them at this point. Traveling that far for treatment will not be an option, we will have to work with what is offered in our area.

Thanks again,
Deb

mh1229
Posts: 22
Joined: May 2010

Braf is for stage 4, so luckily your hubby won't qualify.

The reason they can ethically do a placebo arm for stage 3 is because a chance of a recurance is about 30%. Go to clinicaltrials.gov and you can do a search for what he will qaulify for. Just because that is all the doc offered doesn't mean thats all there is. They only offer the meds/trials they have. You have to do some shopping.

I am on the ipilimumab/placebo trial for stage 3. It is a 50/50 double blinded trial. The only person at the hospital that knows what I am getting is the pharmacist that mixes it.

Good luck with your decision!

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

Thanks for the info... I will pass the web site to my husband. He has decided to do the "wait and see" with tests and scans from his Onc. His primary was never found, the theory could be that his immune system took care of it cancer cells escaped and secondary tumor landed in his leg/groin and was discovered. OR primary lived in the tumor... the doctor isn't sure what happened. BUT my husband has decided that his immune is working and just needs extra help. Well we will see?

So we are in search of another doctor/Naturopath to work with for the health end of things. Should be an interesting year ahead. I look at it as living with "Monsters Under the Bed". We both realize cancer cells could have escaped once again and set up housekeeping and until they are large enough to see via scans we/he are at the mercy of time. My husband will not wipe out his immune system with the alternative which is interferon.

So with that said... onward to more research, no looking back.

Thanks again.

Deb
lovingwife to Bob, stage 3c

ida123
Posts: 3
Joined: Jul 2010

hi im stage 5 mmm and im starting on ipilimumab, could you give me any advise?

LynnLuc's picture
LynnLuc
Posts: 24
Joined: Sep 2010

Not all trials use a placebo. I have stage 4 melanoma and I am cureently NED ( without evidence disease). I am beginning my first round of immunotherapy at Moffitt on Friday 24 Sept. The trial is titled "Monoclonal Antibody Therapy and Vaccine Therapy in Treating Patients With Stage IV Melanoma That Has Been Removed By Surgery" They are also running this same trial for those who are not NED. I think personally it is promising and Dr Weber is an awesome oncologist.
My melanoma was removed by surgery March 26. I previous did radiation and too Temodar from July 09 to March2010.

ockelly
Posts: 2
Joined: Dec 2010

Deb,

I am amazed as I am reading your story... it is mine. My husband had a swollen lymph node in his neck that was removed on 11/4 and dx as metastatic melanoma with unknown primary. His is amelanotic so no pigment. Dec 2nd he had 32 nodes and his parotid gland removed all were negative. He is being offered the same options as your husband. We haven't decided which treatment to go with.

How is your husband doing? What is his followup schedule... PET scan/dermatologist, etc?
What made you decide against the clinical trial?
Also wondering what made your husband 3c. I would think 3b sine he didn't have any further node involvement and has an unknown primary.
Sorry for so many questions but where is he being treated?

Kelly

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

The Unknown Primary... no scary looking mole, nothing to frighten you, nothing to send you running crying to the doctor... until it's too late. A tumor, 3 inches long, about the size of a golf ball around, big enough to stage it at 3c. Big enough for your ONC to say 70% chance of coming back and landing in an organ maybe killing you. That news was enough to knock my husband to the floor and knock my breath away. What do you say to your soul mate after you hear that kind of news? They don't treat melanoma with chemo because once the tumor is surgically removed it is not effective, interferon has a 5% chance of working, this would wipe out my husband's immune system. My husband was accepted into a Cancer Vaccine trial but there was no guarantee, it would make him sick, wipe out his immune system. This trial also had a placebo in place, 2 people get the medicine and 1 person gets the placebo (sugar pill). You wouldn't find out for 5-7 years. Did we have that kind of time?

Bob's surgery: 18 lymph nodes were taken, all tested negative. We felt very relieved. Too much fluid in his leg, leg became infected, another surgery. Lymph Fluid has to find another path to drain away from leg. Now he wears a compression stocking, helps with pressure and tenderness.

Bob has just had his physical and blood work since surgery with ONC. PET scan on Tuesday, waiting for results will be nerve racking. Every 3 months from my understanding for now.

A few weeks ago Bob just had his first appointment with DERM... was diagnosed with "Vitiligo" depigmentation of the skin across his shoulders, like what Michael Jackson had. Interesting that your husband has "Amelanotic" - seems like the melan cells are getting eaten up one way or another in both cases?

One theory is... since my husband's primary was never found his immune system must have been strong enough to get rid of it. His immune system is shooting the good guys (the melan "Vitiligo") and missing the bad guys cancer cells. Instead of wiping out the immune system Bob wants to try to work with it and to feed it the best way we can. So... we get rid of the bad foods like sugar, enriched white flour, pop, less meat, etc. We eat more vitamins and don't cook with processed boxed foods. Eat lots of fresh vegetables and fruits.

Unless his situations changes this is what our mission is. We hope you find your path and what you feel comfortable with. Everyone has to feel comfortable with their journey because you don't want to look back and feel regret.

Deb,
lovingwife to Bob, stage 3c

ockelly
Posts: 2
Joined: Dec 2010

Deb

Praying the PET scan was clean yesterday... that fear in waiting cannot be described.
Just read your post on Immune Boosting. Coincidentally, we are in Portland also... actually Lake Oswego.
Surgery was at OHSU but have seen both Dr John Smith and Dr Brendan Curti at Prov Portland.
Who is Bob seeing as his medical oncologist?
I am so interested in the immune boosting diet and supplements. We haven't made a treatment
decision yet. Are waiting for results to see if TJ, my husband, qualifies for the DERMA clinical trial. We should
know next week. Interferon is of course also an option.
Would you recommend going to Dr Hassell for immune boosting advise? I have been researching
naturopaths in the area but don't have any recommendations.

Kelly

lovingwifedeb's picture
lovingwifedeb
Posts: 184
Joined: Aug 2010

And so the computer touches lives once again... we are not alone in this are we? Thank you God. Well, the test results are in... not good news by any means. My husband's melanoma has crossed the blood/brain barrier, he now has a brain tumor. It traveled from the lymph system to the blood system. I'm at a loss here, definitely no scientist and scared to death for my husband. No other hot spots showed up on his body so just maybe eating healthy helped his immune system stay healthy after all? Who knows at this point? All this in 5 short months after surgery and first diagnosis...

We will learn more on Monday's appointment with neurologist.

Dr. John Smith is my husband's ONC
Dr. Miles Hassell/Portland Providence is an Internist with Providence/St. Vincents
http://www.goodfoodgreatmedicine.com/
He helped my husband with his diet/nutrition. He is a strong believer in nutrition, has his own Mediterranean cookbook. If you are looking for someone who will lead you to vitamins, outside of food this may not be the person for you.

Please be careful with picking out naturopaths. Try to find a doctor who specializes in naturopathic medicine. They would have the training/schooling behind them and it doesn't hurt to ask if they have had experience with cancer. Only my opinion... Did you try asking the Providence Cancer Center for any advice?

My husband has set up any appointment with a Doctor/naturopath in Eugene, her name is Kelly Fitzpatrick, 541-344-9658 that would fit our criteria.
http://www.drkellynd.com/

I hope this helps, I certainly am overwhelmed by all of this as I know you must be.
Best to you and your husband, 2011 is off and running.
Our family blog if you are all interested...

http://redesign08.blogspot.com/

Deb
lovingwife to Bob, newly diagnosed stage 4 melanoma

Lisa958
Posts: 5
Joined: Jan 2011

I just read your post, wow, the treatment options for melanoma sure have changed since 2000. My husband was diagnosed with Stage IV Melanoma in June 2000, after having a mole and an area of the upper arm surrounding the mole removed. His treatment at that time was a clinical trial that did include interferon. He had a year of the treatment, did all his followup tests, appointments and was declared free of cancer. Unfortunately, in December 2009, he was diagnosed with a brain tumor, which was a secondary tumor. It took a month for the doctors to locate the primary tumors, which were two small tumors on the lymph node of his right lung. Of course, these were all Stage IV and after going thru radiation/chemo treatments, PET scans, MRIs, etc. we were informed that the lung tumors were non small cell and that both the lung/brain tumors were from the melanoma from years ago. My husband fought this round of cancer as he did the first...he kept a positive attitude, ate well, rested, and kept himself busy, even when he couldn't work any more. Sadly, the cancer beat him this time around and he lost the battle on 1/7/11. Until the very end, he was fighting it to win. I tell you this because melanoma can be beat, at least for a while. I got an extra 10 years with my husband and for that I am very grateful. I wish you all the best and I hope that your story has a much better ending and you get a lifetime of years with yours. I'll be praying for you.

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