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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Anonymous's picture
Anonymous
Replies 8
Last reply 3/12/2011 - 12:54am

Hi All

I am interested in any feedback regarding the GSK BRAF/MEK combo trial. Anyone in this trial??? What are the side effects & how are you managing them?? Thanks so much for your feedback.

http://clinicaltrials.gov/ct2/show/NCT01072175

 

Wishing everyone a lifetime of NED

Jan

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kbc123's picture
Replies 12
Last reply 3/11/2011 - 11:23pm

I am up in the air here wondering if I am not treating myself as I should.

My surgeon says watch and wait because it is so microscopic in my one node..  All the studying I do on here tells me I should be looking further into this.  My surgeon also said to me that technically, yes I am 3A but he doesnt put me in that category because of what they found in lymph node. To me?  It was still found there so I am 3A?

I was making my second opinion phone call today but I do hear that Sloan Kettering in NY will not even offer a treatment either?  Maybe I should make the appointment in NYU or Penn or whereever...this is so confusing.

Help !  And have a blessed day !

 

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heg50heg's picture
Replies 7
Last reply 3/11/2011 - 10:59pm

Interferon treatments to start on Monday. If anyone else is in this posistion, maybe we can share experience. Kind of afraid of the next month and then the second 11 month period as I am hearing many different stories on the side effects, but after talking with the melanoma team at St. James in Columbus Ohio I feel I really need to make it through for best chance of relapse. I will try and stay in touch

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Hi, I've posted here just a couple of times for my dad.  He has stage IV mel. - lung mets, and a couple tumors in his head and neck area.  This past week he has been at Vanderbilt getting ready to start the GSK Braf/Mek combo trial and passed all the screenings until they did a cat scan of his brain and found 2 small brain mets.  So now he's not eligible for this trial-talk about a major let down-we were all so excited he was going to start this medicine.  But Vandy does have the GSK Braf trial for brain mets and they are now trying to get him into this.  Is this the way to go or should he do gamma knife??  The brain mets have thrown a huge curve ball in everything because I thought I was up on my melanoma research but haven't looked into what's best for brain mets.  

My parents are still at Vandy waiting to here if my dad can get into this new trial (they live 12 hours away).  He's had radiation before for tumors in his head/neck area and it didn't work and he lost all of his hair in that area and still has big issues with dry mouth and not tasting things well.  So radiation isn't something my parents want to do again because it was a bunch of pain and trouble for nothing.  Is Gamma knife the same??  Any thoughts on this braf trial for brain mets?  I know it's new and has had some success but with only a small number of patients.  Also, anyone else have experience at Vandy?  So far my parents love it (doctors, staff just impressed in general), just wish they could start a trial.  

Thanks for any input you can give me.  I feel we really need to so something fast with this small brain mets!

 

Adrienne

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Does anyone else know about chitosan being used to treat meelanoma successfully?  I just heard about it today and was told UCSF Mt. Zion Melanoma Center is selling it and the friend of the woman that told me about has had melanoma remission using it.  I am going to call UCSF Monday but in the meantime was hoping for some info.  Thanks.

Blessings, Shari

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The results of a new phase I study of E7080 suggest anti-angiogenic activity
that is "... correlated with anti-tumor activity in patients with a wide
range of solid tumors".

The abstract can be found at:
http://clincancerres.aacrjournals.org/content/early/2011/03/03/1078-0432...

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Vermont_Donna's picture
Replies 21
Last reply 3/11/2011 - 4:28pm

Hi,

I hadnt posted my good news but someone asked me to....I had 50 to 60 cutaneous and sub q mets scattered over my right leg, concentrated around my knee and a few close to my groin before I started Ipi on December 1st. My melanoma was grwoing daily, I could count new lesions, the size of a pencil eraser or a tad smaller every day and the sub q lums were purplish on the skin and underneath were painful lumpy areas the size of a quarter or bigger. I started IPI December 1st and for the next three weeks tumors were still appearing. After the second infusion, while I had some new tumors that appearing still, I noticed one of my smallest mets developed a "crust" and then within a week ir flaked off and underneath the met was almost gone. The news was too good to be true...I waited til my next infusion to show my oncologist. He was pleased but also noted the new melanomas but comforted my by saying that new lesions appearing int he first 12 weeks was "acceptable" per the protocol, meaning it didnt mean that Ipi wasnt working yet, and that the sponser Bristol Myers Squibb wasnt going to toss me out of the trial. 

After infusion three major changes to my melanoma lesions started happening. First of all, NO NEW ONES popped up and second, my present melanomas started "reabsorbing". No other ones crusted over and flaked off like the first one. More were reabsorbing by infusion #4 and by the time I went for my PET/CT scan two weeks after my 4th infusion, ALL the melanoma tumors were ALL GONE. I showed the oncologist my leg and he was very impressed. The sub q's were still palpable but smaller and they didnt hurt. My PET/CT showed no new melanoma anywhere, it did show some moderately hypermetabolic activity in my external iliac lymph nodes (in the right nodal basin where my groin lymph dissection was done)......my doctor thought that this reflected inflammation reaction to the Ipi charging up my immune system.

I am currently in the 12 weeks "watch and wait" part of the clinical trial. My symptoms have been increased fatigue, so I rest/sleep more, ie a daily nap when I can manage, some nausea (not daily but when it hits me it really hits me, maybe once a week), some whitening on my skin (noticeable to my doctor and under a blacklight), a rash all over my body after the 14th week, not itchy, and not that noticeable to anyone but me. I think that is about it for side effects. I am very pleased needless to say!!! I asked what the "durable response" is and my oncologist said he could predict that, but he is hoping "forever"!!!!

 

I am B-Raf negative by the way, and have had melanoma since March 2006. Read my profile if interested for an accounting of all the treatments I have done. Many treatments perhaps delayed re-occurence but Ipi (besides resection where possible) is the only thing that has effectively "worked" to eradicate my melanomas. I hope this gives others HOPE for themselves!

Vermont_Donna, stage 3a

currently stable after 4 infusions of Ipi

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uvagirl06's picture
Replies 13
Last reply 3/11/2011 - 3:26pm

I can't even believe I'm writing this, but here goes my introduction. I'm 28, female, and just diagnosed with melanoma. It is believed to be localized, but they do have to go back in and remove a larger area around where the mole was. I had another mole tested and it came back as highly abnormal (not malignant as far as they could tell) and something about possibly invasive. The pathologist actually called my doctor because they were so concerned since I'm so young.

I've had the normal sunburns, but I don't use tanning beds (with the exception of a few times before my wedding 6 years ago), and I'm not someone who is always in the sun.

My doctor is talking to a dermantoligst to see how we should approach this.

I'm so scared right now. I also have another issue going on in which I am having a kidney ultrasound today for. It could be nothing or it could be cancer which would be extremely rare for my age, but then again, I now have skin cancer at 28.

I'm hoping to find some comfort and community in this group.

Thanks,

uvagirl06

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carol b's picture
Replies 5
Last reply 3/11/2011 - 12:03pm

OK. ive been home for 5 days. I am still miserable. I am having so much swelling. Itching is driving me insane. My eyelids are gonna peel off. I have huge whelps all over my back. I am using the Derma Sarra lotion from the hospital. petro jelly for my eyelids. Benadryl for the itching. I have no clue what to do about the swelling. I take Aveeno baths daily. No one from the hospital warned me about the symptoms lasting so long. Im not even got enough time to heal before i hit round 3. My eyeballs feel like they are on fire and r gonna fall out of their sockets. My ankles have turned to cankles.. When will it  stop? Does anyone have any advice for me? It has to end soon. I need to hear it will end soon. Yes i am whinning. Yes its a pity party. I know there are more people on here far worse than me and i bow to you. You are so much braver than i am. I cant imagine going thru this for years like alot of you have. My heart goes out to you all. Im just not feeling like its worth the fight, or maybe it is, i dunno. 

 

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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JenC's picture
Replies 3
Last reply 3/11/2011 - 9:49am

My husband is finally getting BRAF. We were trying ipi but his body is shutting down so fast. New tumors show up daily and he is wasting away. He participated on the phase 3 trial but got dacarbazine. Since then he has done one cycle of IL2 and 3 doses of ipi. I hope he gets the drug asap and it works fast.
JenC

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Jlynn2303's picture
Replies 1
Last reply 3/11/2011 - 8:05am
Replies by: lhaley

Hi,
Last October, my 63-year-old step-mother was taken to the ER for a GI problem resulting from old bariatric surgery. They did a CT scan of her abdomen and picked up spots on her lower lungs. The radiologist compared the CT scan to one taken three years previously when she had gone to the same ER for the same GI stuff and found that the masses had grown. It turned out that her doctor had forgotten to inform her. She had surgery to biopsy and remove the larger lump, (they removed a lung lobe) last November ('10) and it came back as melanoma, stage IV. A Pet scan in December came back clear. Apparently, she also has cysts on her ovaries and her CA-125 came back extremely high (over 1000). She is scheduled to have another PET in April, although the insurance company still is not certain it wants to pay for the first one. They have denied Interleukin treatment. Her father, brother and grandmother all died of various cancers. They did a skin inspection and found nothing. She seems to be feeling the same as always, no worse, no healthier.

I am having trouble getting a straight answer out of people and have some questions.

1. They actually discovered stage IV melanoma in her lungs over three years ago. When they talk about prognosis, how do they figure the time?
2. How accurate are PET scans? Everyone seems to think they are infallible, but I've seen stats of 81% accuracy. What does a clear pet scan + a positive CA-125 mean?
3. How does having had melanoma impact all of the other, unrelated surgeries and stuff that she will have to have to tx her many other ailments?

Thanks,
Jennifer

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RMcLegal's picture
Replies 5
Last reply 3/11/2011 - 7:55am
Replies by: RMcLegal, ShariC, Anonymous

I underwent biochemotherapy treatments at the University of Colorado Cancer Center in 2003, after receiving a Stage IIIc diagnosis (14 malignant nodes).  Today, I'm still above ground and healthy, showing no evident disease.  I've blogged about the lighter side of the journey at www.hotelmelanoma.blogspot.com.  Any other biochemo veterans out there?  Please share your stories.  Best wishes.  Rich McDonald

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akls's picture
Replies 3
Last reply 3/11/2011 - 7:46am
Replies by: lhaley, akls

I posted earlier in the week about my thyroid being enlarged.  They found at least two nodules on my scan one of which was "cold".  They sent me right over to ultrasound which dectected the nodules also.  Needless to say off to a biopsy at U of M for me within the next couple weeks.  Did anyone have actual nodules that turned out to be nothing?  I know the stats are in my favor, but can't help but being freaked out right now. 

 

Amy S. in Michigan

Stage IIIA 5 1/2  years NED Completed 1 year interferon 2009.  God is Good.

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hi,

This is very minor issue, but was curious.  I have been off of interferon for year and a half.  My cholesterol was normal before interferon, but since doing interferon it has been high.  I hoped a year after being done with interferon I would see cholesterol go down, but instead it has gone waaaay up.  I have spent past year eating low fat, no carb, healthy diet, exercise daily blah blah blah haha do all that I am supposed to but it has gone from over 200 to now over 300.  I wondered has anyone else found that the interferon did this? I would like to blame it on that, doctor pushing me to go on medication but I am trying not to, but seems I have going to have to. 

thanks laurie from maine

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glewis923's picture
Replies 14
Last reply 3/10/2011 - 7:05pm

Hello from Hoboken, GA:  After 1 wk. SRS then 2 wks. WBrainRad,  I'm now offically on Ipilimumab (IPI).  Started last Thursday, less than week after WBR. and feeling quite well under circumstances.  Questions on IPI:

1- How long did it take for you to "present" any side effects..? 

2- Took bath last night and started itching around waistline, upper thighs;   stopped after I cooled off;  IPI ??

3- Is it really true that showing some side effects "means its working"?

 

Thanks for any input.  Love, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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