MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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sjl's picture
Replies 1
Last reply 3/5/2013 - 10:58am
Replies by: G-Samsa

My husband received his second round of yervoy ten days ago after a new lump popped up under the skin of his neck and another one began to grow agian.  Since then, the two tumors have changed shape, size, gotten harder, softer, etc and I understand that all of this could be because of the yervoy and that it will take some time to know if it is working.  A couple days ago he got up and said his jaw had hurt during the night.  Yesterday I noticed new growth along the jaw line. I could see it acrosss the room.  It's hard as a rock and last night he couldn't sleep because of the jaw pain.  I'm worried sick.  I know it's melanoma growing again and I'm afraid it will take off like it did last summer when it grew everyday until things reached gigantic proportions before beginning treatment.  You can check my profile if you need more information.  We are waiting for a call from his doctor.  He is braf and cKit negatice, NRAS positive but ineligible for clinical trials because of a secondary primary lung cancer that was treated in October.  Carbo/Taxol failed and I don't know what else can be done for him.  He had to go the chemo route initially because things were growing so fast and the only other treatment mentioned at that time was IL2, which the doctor said he couldn't handle.  Maybe he can now, I don't know.  Any ideas on other options and what we should be asking the doctor?  If this takes off like it did last summer we won't have much time to get things taken care of.

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audgator's picture
Replies 2
Last reply 3/4/2013 - 9:44pm
Replies by: Bubbles

Bubbles et al:  3 months ago I posted about my itching being worse.  Here I am 2 days from my next quarterly treatment and I am worse again.  I'm always somewhat itchy but it seems I get worse just before the next infusion. Interesting.     Dan

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I found this while reading throuh Angeles Clinic  (Los Angeles, CA) latest info.  I don't know anything more about it but I am sure if it is something that can help someone you can find out.heart

BRAF/MEK -   BRIM 7: BRAF and MEK Inhibition with Vemurafenib and GDC-0973 in Patients with BRAF V600 Mutated Advanced Melanoma * available for patients progressed on Vemurafeib or Vemurafenib naieve

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

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joy_'s picture
Replies 17
Last reply 3/4/2013 - 4:29pm

Hi everyone.  First of all, I want to say that I am really grateful for the information that everyone shares here.  It has been very beneficial...  We found out a couple of weeks ago that mel has returned after a 2 1/2 year hiatus.  My husband has tumors on his lung, liver, adrenal gland, etc.  We are waiting for the BRAF test to come back, and in the meantime I am trying to figure out what options are out there.  After talking to his doctor, it sounds like that only choices available here are either a clinical trial of Vemurafenib followed by IPI (if BRAF pos) OR choose between Ipi and IL2.

We are good with the trial if his BRAF test comes back positive but trying to have our game on to know what to do if it isn't because IL2 sounds like a horrible choice for him.  Does anyone have any suggestions based on your experience or about other trials that are being done around the country?  Is there anything else I can be looking into?  It seems like you pretty much have to have a failed attempt with IL2 or Ipi to move on to something else?  I am trying to educate myself  so any feedback would be much appreciated.

Thank you.

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buffcody's picture
Replies 4
Last reply 3/4/2013 - 3:02pm
Replies by: JerryfromFauq, awillett1991, Anonymous, POW

On this and another forum, people talk about getting tested not only for BRAF mutations but C-Kit and RAS as well.  Maybe others.  I know that my insurance allowed me to be tested for BRAF and this was done twice using older and current techniques.  No mutation. Both tests paid for by my insurance.  I've mentioned being tested for C-Kit but my oncologist seems to duck the question.  I have an unknown primary, though it is assumed, I suppose because of likelihood rather than anything strictly scientific, that it was originally skin.  Would it benefit future treatment to know about the other two mutations listed or any others?  Is there any insurance coverage for other tests besides BRAF? I would not hesitate to pay for them out of pocket is they could tell me something significant for further treatment?

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Janet Lee's picture
Replies 5
Last reply 3/4/2013 - 2:22pm
Replies by: Tim--MRF, awillett1991, POW

I've seen some posts here that people have been treated with Zelboraf even if they didn't have the V600e mutation (they had V600K or V600-other-than E). Could you share with me how you got that treatment? My husband tested positive for BRAF, but he is V600R and the insurance company denied him the treatment. It was denied twice, and a third appeal has been sent. I've tried Genentech's various avenues for assistance, but even they won't help. It seems if your household earns > $100,000 per year you are not worthy of help.

Thanks.

Janet

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Christinalynn4's picture
Replies 5
Last reply 3/4/2013 - 12:33pm
Replies by: Christinalynn4, JC

I was diagnosed with Melanoma on Jan 28th 2013 I had a mole on the left lower leg that had been there my whole life.. It had not changed but i did cut it with a razor shaving. I was nervous to have it removed in dec so i waited another month..it did not hurt at all when I had the shave biopsy and could have prob cut it off my self..it came back melanoma ..long story shorter i had surgery feb 15th the surgeon thought i would need a skin graft w a wound vac but he was able to pull the skin and stitch it closed..I thought it was good i have stretchy skin. I had slab to the left groin also. 2lymph nodes were taken and thank god came back negative and w the wle all the margins were clean no cancer..I ended up with a seroma to the groin and increased pain then increased pain to lower leg w redness and drainage. The groin has eased up and I opted to let the seroma hopefully dissolve on its own. Im really concerned about the lower incision. I started Keflex thurs but called the dr sat because the wound looked worse and started taking Bactrim twice a day. The dr does not seem concerned it is a five inch incision and they say there is a chance it will open! I have been out of work almost three weeks now and am a little terrified to go back thurs if it opens i will prob need a wound vac and another month off of work.. DOES ANYONE OUT THERE HAVE ANY ADVICE?? I have been wrapping the leg with four ace wraps as recommended by the dr from the toes to the groin and taking it off at night. 17days since surgery! The most pain I have is in the thigh....I don't know if I tore the muscle..I ve tried creams Lidoderm patch and ice nothing seems to be working. If anyone can help i would really appreciate it,

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I was diagnosed with Melanoma on Jan 28th 2013 I had a mole on the left lower leg that had been there my whole life.. It had not changed but i did cut it with a razor shaving. I was nervous to have it removed in dec so i waited another month..it did not hurt at all when I had the shave biopsy and could have prob cut it off my self..it came back melanoma ..long story shorter i had surgery feb 15th the surgeon thought i would need a skin graft w a wound vac but he was able to pull the skin and stitch it closed..I thought it was good i have stretchy skin. I had slab to the left groin also. 2lymph nodes were taken and thank god came back negative and w the wle all the margins were clean no cancer..I ended up with a seroma to the groin and increased pain then increased pain to lower leg w redness and drainage. The groin has eased up and I opted to let the seroma hopefully dissolve on its own. Im really concerned about the lower incision. I started Keflex thurs but called the dr sat because the wound looked worse and started taking Bactrim twice a day. The dr does not seem concerned it is a five inch incision and they say there is a chance it will open! I have been out of work almost three weeks now and am a little terrified to go back thurs if it opens i will prob need a wound vac and another month off of work.. DOES ANYONE OUT THERE HAVE ANY ADVICE?? I have been wrapping the leg with four ace wraps as recommended by the dr from the toes to the groin and taking it off at night. 17days since surgery! The most pain I have is in the thigh....I don't know if I tore the muscle..I ve tried creams Lidoderm patch and ice nothing seems to be working. If anyone can help i would really appreciate it,

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eric w's picture
Replies 2
Last reply 3/4/2013 - 8:58am
Replies by: eric w, POW

Hi all,

My wife had melanoma removed from her arm 2 years ago. It was ulcerated. It was removed with a node ...clean margins and node.. Done at UCLA.. And we have been going every 3 months for follow up..including pet/ct scans... Multple millimeter nodules were noted in an April 2012 pet scan.. Told to watch them..August 2012 ct should nodules stable.. February ct showed 5 of the nodules had grown from April.. Did a needle biopsy of a nodule a couple weeks ago and found to be melanoma... So we are going this Friday to meet with our onc.. The following week we are going to MD Anderson in Houston to meet with Dr. Kim for a second opinion on treatments... Then go from there.. We are still waiting for the mutation test results... My question on this would a molecular report be valuable in the beginning part of treatment... And for that matter for the whole process.. Trying to get all the tools I can to help my beautiful wife through this. Thanks

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Hello - my name is Bret and I'm a 42 year old father in Minnesota who has been battling Stage 4 melanoma for four years (started in leg, went to groin, then pelvis three times).  After going a full year without a tumor, I got scan results Thursday showing two new tumors in my pelvis.  I've had 8 surgeries, Interferon, chemo, ipi, oncovex, and radiation.  Running low on options now.  B-RAF negative and C-KIT negative.

Doctor is recommending I get into either a PD-1 study or a TIL study. The PD-1 study using MK-3475 is available at Mayo Clinic and I think I can get in.  I have an appointment tomorrow to sign consent and ensure that I qualify.

My questions - first, what has been your experience with PD-1 studies?  Second, we know very little about TIL and would appreciate any advice or input.  Finally, I have never tried IL-2, is that a good option or am I better off with a clinical study?  Also, does anyone know anything about the sequencing of these options?  Could I get IL-2 before or after one of these trials?

Thanks in advance for any advice.

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randallgford's picture
Replies 6
Last reply 3/4/2013 - 4:55am

We had our second onc visit and resuls of Pet show numerous lesions on lungs, liver, and

abdomen. Brain Mri looks clear but will repeat in 8 weeks. He wants to start Yervoy immediately.

wont get braf mutation for 3 weeks but doesnt want to wait. He talked about some chemo

drugs we could add later.

Planned to go to Moffit for a consultation tomorrow but they just called and said they are not on

our insurance and recommended we go to another facility. We have Sylvester here in Miami,

or Mt Sinai Dr Lutzky who is listed as a melanoma specialist so we are debating going there

instead for a second opinion. I still kind of want to go to Moffit and just pay the $1500 consult fee.

But we couldnt get treatment there, so hubby is leaning against going. So stressful.

Never give up!

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dolphin5's picture
Replies 2
Last reply 3/3/2013 - 11:54pm
Replies by: democat, awillett1991

Has anyone found relief from the constant itching besides the Aveeno creme and hydroxyzine 30mg.  She was up most of the night and found little relief.  I know it takes time for this to pass but any little trick or suggestion is appreciated. 

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I have been in a GSK BRAF/MEK combo trial for Stage IV patients since May 2011.  So far so good!  John Patrick Michael Murphy, who also posts on this board, has been on this combo for over 2 years and recently posted that he is well.

GSK recently announced a study of this combo for Stage III patients:

http://www.gsk.com/media/press-releases/2013/glaxosmithkline-starts-phas...

This will be a Phase III double blind study, with patients randomized to receive either the BRAF/MEK drug combo or placebos.  It is something for completely resected Stage III patients to think about, as existing adjuvant therapy options are limited.

Best wishes,

Harry

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Janet Lee's picture
Replies 17
Last reply 3/3/2013 - 9:29pm

Please forgive me if I am being redundant in my posts. You have been helpful and I've learned a lot in a pretty short period of time. But things in our household are changing so rapidly and we are so scared, I need some help and reassurance about what we're doing and what else we should be doing.

My wonderful husband, Don, was diagnosed just 2 short months ago (1/17/13) with Stage IV Metastatic Melanoma. We thought he had a bad disk (back pain). No history of melanoma (couple of basal cell spots removed in earlier years). We were just getting ready to retire and spend a winter in Florida. Never found primary.

He had one asymptomatic lesion in his left frontal lobe; Cyberknife performed 2/8/13. Two pelvic masses and another lesion at the base of his spine, received 12 radiation treatments in attempt to alleviate pain (helped a little). Other tumors in muscle along his spine, at base of neck, adrenal gland, small nodules in lungs, and recently discovered one or two in stomach/esophogus.

His disease is pretty widespread. He's being treated at Dana Farber, who wanted him on Zelboraf. Insurance company denied it because he is BRAF V600R, not V600E. It is now in third appeal in Washington (he has a BC/BS Federal Plan). I AM LOOKING FOR ANY RESEARCH/SUCCESSFUL EXPERIENCE/KNOWLEDGE OF ZELBORAF'S EFFECTIVENESS ON V600R MUTATION THAT MIGHT HELP IN THIS APPEAL!

On 2/15/13, Don was given his first infusion of Yervoy. A few days later, it seems all hell broke lose. His right leg became almost paralyzed, his right arm extremely weak, and he was overcome by extreme exhaustion. He spent a week in Brigham & Women's Hospital. They felt he had tapered too quickly off the steroids, so they gave him high dose injections and he's now on 16mg a day. His red blood count was so low, they gave him two units of blood. This is when we found out that he has mets in his stomach/esophogus which are "seeping" blood. The brain met is now larger than it was a month ago and there is inflammation around it, so they are now suggesting surgery to remove the brain tumor.

I have so many questions. This is all so fast! Brain surgery is scheduled for Tuesday, March 5. Don is an otherwise healthy, robust man; 6-foot 1-inch, 200 pounds. I have to lift his right leg for him to get into/out of the car, up the stairs, etc. He can barely sign his name with his weakened right hand.

I need to help save this man's life, as he is MY life. I'm so confused about the treatments and the clinical trials. Some say no brain mets, others say brain mets allowed. What meds and trials should I be asking his melanoma oncologist about? I believe she knows what she's doing, but I know I have to be our own advocate!

Thanks for helping! I'm so scared.
Janet 

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5374brian's picture
Replies 3
Last reply 3/3/2013 - 9:07pm

My wife was diagnosed Dec 7 2012 with stage 4 metastized melanoma. We had our first appt. at Moffitt Cancer Center in Tampa before the holidays. Scans showed lung , abdomen and brain. The brain had one spot 4mm that Moffitt recommended one treatment radiation which was done in Jan.2013. Also in Jan. they started her on Yervoy. Her side affects have been mostly fatigue. After the first treatment several small spots popped up arm, biceps, back, around her breast and neck. We went back for the 2nd treatment Feb. and was told this is ok due to part of the treatment causes inflammation then the yervoy will start fighting. Now we went back this past Tuesday for the 3rd treatment and the larger tumors that were measured before one on her neck and the other on her back  had gone down about 1cm each. I guess what i am wondering, is this a typical path for someone on IPI. Maybe nothing is typical. I feel my wife and i were hoping for much greater results by now. She had no primary found. She is 35 years old and has no symptoms of anything wrong until the fatigue that was brought on by the Ipi. Thanks in advance for all your thoughts. i have loved reading the post on this site since we were told about in Jan. 

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