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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Dave from Ormond's picture
Replies 9
Last reply 5/2/2014 - 9:22am
Replies by: rgrand, MattF, Dave from Ormond, Sherron, doro, Anonymous, Kim K

I have posted on here multiple times. Those who know my background please excuse this short summary.

I have Stage IV Melanoma in multiple locations. I completed the Yervoy/Ipi 4 treatments last year.  Am currently do B-raf/MEK.  I got 90% of possible side effects from Yervoy and already had to be temporarily taken off the B-raf/MEK due to side effects.  Had two different rounds of radiation treatments, the last one being whole brain radiation. That's the short of it.

My issue is that I've successfully managed to work throughout the whole process and have only missed a little over two weeks work.  I am a Project Manager for a construction company and my job requires I use my mind all the time.  For the last few months, I've been either in a state of pain, medication, or a combination of both while at work.  Needless to say, my work is suffering.  I cannot afford to take a leave of absence as I'm already two mortgage payments behind from my wifes temporary unemployment last year.

Who can I turn to for financial help?  How quickly can I get on disability and how much will that pay? Can someone tell me how they've gotten financial aid to get them through their battle?

I need help, I can't keep stressing over work issues while trying to win this battle against melanoma.

Dave

The smile on my face isn't a disguise, it's confidence that I'll be here for many years to come.

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Replies by: triggerfish, boot2aboot

http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&c...

Abstract:

Background: Serological typing for both HLA class I and class II antigen expression, has previously shown association of specific HLA antigen expression with clinical response and survival in patients with metastatic melanoma treated with IL-2 (e.g. HLA-DQ1). Purpose: To evaluate the impact of HLA class I (low-resolution) and class II (high-resolution) expression, on the outcome of high-risk melanoma patients receiving adjuvant high-dose interferon. Methods: 181 stage IIB, IIC and III melanoma patients (88 female and 93 male), median age 52.1 years and 246 healthy controls were included in this study. DNA was used for the determination of HLA-A, HLA-B, HLA-Cw, HLA-DRB1 and HLA-DQB1 genotypes. Results: With a median follow-up of 37 months, 59 (group 1) patients have remained with no evidence of recurrence and 122 have recurred (group 2). Statistical significant differences between the two groups, were found in the following genotypes: HLA-A*02 (42% vs. 57.3%, p=0.08), HLA-A*33 (15.2% vs. 6.5%, p=0.05), HLA-B*51 (15.2% vs. 34.4%, p=0.01), HLA-B*57 (11.8% vs. 2.4%, p=0.02). Statistical significant differences between group 1 and healthy controls, were found in the following genotypes: HLA-A*33 (15.2% vs. 6.5%, p=0.05), HLA-B*51 (15.2% vs. 28.5%, p=0.05), HLA-B*57 (11.8% vs. 4.5%, p=0.05), HLA-Cw*03 (23.7% vs. 11%, p=0.01), HLA-Cw*06 (27.1% vs. 16.1%, p=0.06), HLA-DRB1*0701 (27.1% vs. 13.4%, p=0.01), HLA-DRB1*1601 (35.6% vs. 22.3%, p=0.01), HLA-DQB1*0202 (23.8% vs. 10.1%, p=0.09). Conclusions: Statistical significant differences were seen in HLA-A and HLA-B alleles between the patients with high-risk melanoma free of recurrence and those who recurred after treatment with adjuvant interferon. Additionally, differences were seen between healthy controls and melanoma patients free of recurrence.

I'm me, not a statistic. Praying to not be one for years yet.

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rgrand's picture
Replies 7
Last reply 5/2/2014 - 1:54am

First of all, my questions seem petty compared to the posts by those who are facing Stage III or Stage IV issues. My heart goes out to you all and to everyone who's here to support each other. I am sending as much good thoughts your way as I can.

I met with the plastic surgeon today who will be removing a large portion of skin on the bottom of my right foot that wraps around to the outside of my foot as well and extends a bit onto the top of my foot. Tomorrow I will meet with the surgeon who will discuss with me the lymph node removal and biopsy procedure that will happen at the same time as the skin graft. I do not yet know when the surgery will happen, but my plastic surgeon has said it will likely be sometime within the next two weeks.  My PET scan came out clean, but I know that until they biopsy the rest of my affected skin and examine some lymph nodes they really don't know what stage I'm at. (Clark level 2, 0.4mm thickness on primary dark area from partial biopsy).

The plastic surgeon explained to me that they can handle the graft as either the split thickness or the full skin graft...but he recommended the full skin graft for my situation but seemed to suggest that if I had a preference I could go with either. I guess the issues with the full thickness graft is the issue of getting it to be accepted and blood flowing into the tissue before something goes wrong with it. The split thickness grafts get blood flowing into them quicker, I guess, and have a better acceptance rate. They will be taking a large diamond shape from my abdomen side where it's not hairy and using that skin as the donor site.

Is it normal for a surgeon to offer either type of graft? Who's had the full thickness graft and did you have rejection issues with it?

Thank you,

Robert

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arthurjedi007's picture
Replies 17
Last reply 5/1/2014 - 7:16pm
Replies by: arthurjedi007, Anonymous, POW, kylez, BrianP, killmel, Mat, G-Samsa

Any thoughts whether I should do Merck or MedImmune PD1 or something else?

Just found out today I failed the taf/mek combo. So I'm trying to figure out the next treatment. At least I have choices. I'm thinking either merck or medimmune PD1 but my gut tells me there is something better I just haven't found it but I do feel it is something with PD1.

Merck EAP PD1 will be the 3mg/kg which they only reported results for all doses not this low dose. Otherwise seems to be no washout period or anything else bad about it that I could find. I can get this at Mayo where I'm already in their system. If I do this it disqualifies me for MedImmune PD1. NCT02083484

MedImmune PD1 would probably be the 10mg/kg. Has a 28 day washout period. Is phase 1 so is fairly unknown. I can get this at Sarah Cannon where I'm already in their system. Can do this and still qualify for Merck PD1. NCT02013804

NCT01753089 wdvax shows up as PD1 on search which looks interesting but is phase 1.

NCT01621490 BMS PD1 the folks at MD Anderson were not too eager for me to be in this when I asked them. Not sure why since it does allow ipi failures.

Not really seeing any other PD1 out there that I qualify for that has started.

The failing of the taf/mek combo was fairly minor according to the doctor's PA. One tumor grew about 50%. 2 new supraclavicular lymph nodes demonstrating increased FDG uptake. Everything else either stayed the same size or shrank by a tiny amount.

 

 

 

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/1/2014 - 7:09pm

My husband was recently diagnosed with stage 3B-melanoma.. We noticed a pink cyst like lump at the base of his neck in November 2013. After much discussion-he had it removed only to find the answer that has changed our lives.  (no color melanoma measuring 1.5 x 1.1 x .8cm with a lesion depth of 9mm). We immediately had many doctor checks to see if we could find a primary site but to no avail. In December 2013, had the tumor successfully removed and a SNB. Lymph node was clear.  Results of PET scan were also clear.  In March 2014, we found another spot (melanoma) on the skin surface that was removed with clear margins.  We were told this may perhaps be an "in transit" spot.  At the present time, we are waiting on results of BRAF mutation test.

Where do we go from here?  We have been told that there are many clinical trials that we may quailfy for. As I have researched the trials-- I am finding out about T-VEC and also hearing the words Yervoy and Interferon.. Of course, the medication side effects seem horrible.. I am asking for advice on the drug treatments and also clinical trials.. HELP-- feeling overwhelmed and confused.  

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/1/2014 - 3:28pm
Replies by: momof4boys

My father has had melanoma for 2 years. He is at stage 4. He had his last surgery from his neck.There is no tumor in his body but it is also told us that there is metastas. We started to take yervoy and he has just taken his third dose. But it seems that the drug doesn't work on him. He was feeling better before using it.He is feeling too sick to stand and always rests in his bed. He also has some swellings on his neck, left arm and left leg. His doctor told me that he is gradually getting   worse. Swellings seem like oedema but not sure. I am feeling so sad and useless and I wonder if it is normal to feel so sick while using this drug. Yervoy is new in our country so I want to read your experiences. Thank you ..

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/1/2014 - 3:22pm
Replies by: Kim K

As a rather young and newly diagnosed stage 4 patient  there are a lot of thoughts going through my head about this and I would like to know your opinion on this!

My assumption is that with all the discoveries made on the level of microbiology, all the  scientific methods and tools we have it is no more than a matter of money to find a cure for most kinds of cancer.

There are written sources from thousands of years ago that describe cancer.. There is evidence of cancer researchers from at least 200 years ago. Compare how long it took to bring significant survival benefit to people infected with HIV which was discovered around 1980.

I do not want to hurt anybody's feelings who is of different opinion about the following as I am really happy to have found this community but I had to look up the following figures

US military spending 2012: 682 billion $

budget of the national cancer institute 2012:  4.8 billion $

NCI spending on melanoma research 2012: 121.2 million $

Bottom line: in 2014 we are able to hit a dime that somebody lost in Afganistan with a missile fired from an unmanned aerial vehicle which is flown by a guy who sits in California with a cup of coffee in his hands from a height of several thousand miles. 

We are unable to cure melanoma.

Q: What could mankind achieve with all the money from all countries spent on equipment to kill people? We could e.g. Try to cure people. To help ourselbes and people from poorer countries to also get treatments for deseases where pharmaceutical companies do not see big business. Etc., etc, etc

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FayFighter's picture
Replies 9
Last reply 5/1/2014 - 2:17pm
Replies by: FayFighter, BrianP, Brendan, Anonymous

I am posting on the forum as I respect and think all the membershere are amazing. You have all kept me sane for the past 8 months but it looks like things are about to ramp up.  We will be meeting with two separate melanoma specialists (oncologists at Penn and MSKCC) and the surgeons in the next couple weeks.

My husband had what was thought to be premelanocytic nevi in 2010 lower left calf.  July 2013 bump now appears at site under skin by originial lesion and he progresses to have an enlarged lymph note in groin.  Its metastatic melanoma and slides from 2010 are reread as melanoma by MSKCC.

August 2013 Lymphadenectomy(just uppers/cloquet clear) and removal of calf lesion.

October 2013 start of Ipi 3mg/kg (he did get four cycles in)

December 2013 Colitis Tx with Remicade and Prednisone

February 2014 Genetic Profiling of tumor reveal NRAS mutation

February 2014 Brain MRI and CT Chest abdomen Clear

Last monday PET shows lesion at originial site on calf, upper thigh of affected leg and spot in gastric body

Upper endoscopy this past Monday reveals 3.5 cm melanoma (just in ulcerated region)

We meet with MSKCC surgeon who removed lesions in leg/groin this past August today.  Friday the team from PENN...talk of Expanded Access for Anti PD 1.  Saving Mek inhibitors for later as they are not as durable.

Any advice suggestion words of support appreciated. 

And thank you all.

Angela Wife to Mike (fayfighter)

 

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Shelby - MRF's picture
Replies 1
Last reply 5/1/2014 - 8:38am
Replies by: rgrand

Dear MPIP Community,

I wanted to inform you, if you didn't already know, about our #GetNaked awareness campaign that has recently launched. We are simply encouraging people to do their best to detect melanoma early. Of course sun safety is also very important, but this year, we felt that early detection was a space that could use a bit more presence. If you would like to learn more about our campaign, please take a look at the GetNaked Press Release.

Thanks,

Shelby - MRF

 

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As I'm sure you are all aware, it is melanoma awareness month. I am loving the #GetNaked campaign! I plan to post a tidbit of information on my fb page everyday for the whole month, but could use some help from our experts out there. I'd like to provide my fb friends information that they can use to be proactive, so if there are any stats or snip-its of information you can lend me, I'd like to share the knowledge! Hopefully with others learning more we can inspire more research and eradicate this disease!

Thank you!

Megan

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TSchulz's picture
Replies 8
Last reply 5/1/2014 - 2:53am

I wanted to drop in to share some positive news. It is one year since I was officially labeled NED by the team at NIH.  I recently had follow-up scans and things still look good. 

It has been a busy and full year for my family and we feel so blessed to have this breathing room.   I remain so grateful to this community for all the help and support it provides. In my work, I get to meet many people diagnosed with melanoma and I always recommend this community to them as a way to help make sense of this crazy disease. 

I wish you all the best of health in the coming year. 

Troy

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/1/2014 - 12:44am
Replies by: doro, Anonymous, Tamils, arthurjedi007, Patina, kylez, BrianP

Hello

My Mom is newly diagnosed with Melanoma. She lives in the San Jose area of California. We will be meeting with her primary care Dr (the one who ignored the large mole on her leg a year ago) and I belive she needs to refer us to an oncologist. I would like to be prepared and know of someone in the area so we may advocate for that referral if necessary. My trust in her primary is minimal. Any suggestions or recommendations would be much appreciated. 

 

Thank you so much! So appreciated!heart

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Anonymous's picture
Anonymous
Replies 0

My husband will start this trial in a couple weeks if all goes well.  Anyone else on this trial and what have been your experiences?  Thanks in advance. 

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DUSTILANE's picture
Replies 7
Last reply 4/30/2014 - 5:29pm
Replies by: kluft, jogo, G-Samsa, DUSTILANE, Anonymous, heiditemple

My husband has metastisized melanoma.  He has just finished his first 4 IPPY treatments.  We go this week for CT scan and brain MRI to see if there are any changes.

 

His oncologist said something about another round of IPPY in 3 months, but I cannot remember if he said that could be done if the IPPY did work or did not work.

 

Anybody know anything about additional IPPY treatments?
 

 

Dustilane

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/30/2014 - 3:39pm
Replies by: Anonymous

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