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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ecc26's picture
Replies 2
Last reply 7/4/2014 - 6:47pm
Replies by: ecc26, arthurjedi007

Hello everyone,

Not sure if anyone out there can help me on this, but I have a side effects question:

I was on the BRAF/MEK combo all winter, which meant I didn't spend a whole lot of time outside most of the time I was on the drugs. They began to fail in May and by that time I had noticed that I had developed photosensitvity (sun sensitivity) as a side effect. That wasn't terribly surprising, but they combo began to fail in May, I had a 1 week washout, then began the Merk PD-1 EAP. I just got my second dose this past week and so have been off the combo for 5-6 weeks. I still seem to have some photosensitivity, as well as some folliculitis (basically body acne) on the backs of my legs. I have not found anywhere that states that these are possible side effects of PD-1, so I am assuming they are leftover from the combo. 

My question is: has anyone else had lingering side effects after coming off the combo, and if so how long did they last?

Thanks for reading!

 

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NYKaren's picture
Replies 20
Last reply 7/4/2014 - 2:14pm

Howdy all 

well, nearly 4 years after I first heard the phrase, Thursday I'm going for Merck EA Anti  PD1 at Sloan. 

with failing almost every treatment out there, including gamma knife for brain mets, 2 rounds of Ipi, and both BRAF treatments, I'm finally getting PD1. With the news that Ipi non-responders have a lower response rate, my excitement is tampered but hopeful. I don't get where these IPI successes are, why would they start PD1?  I guess they were partial responders??  If anyone knows, please advise. 

Please wish me luck. 

FYI, I know Dr. Sznol at Yale is starting a trial for brain mets, but he said to me that since I had gamma knife very recently, he advised PD1 ASAP.   So, here I go. 

Karen

Don't Stop Believing

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Anonymous's picture
Replies 3
Last reply 7/4/2014 - 11:53am
Replies by: Bubbles, Anonymous

http://www.healio.com/hematology-oncology/melanoma-skin-cancer/news/online/%7Be031bb22-0506-4216-bb0c-6ae56273e834%7D/primary-melanoma-regression-not-linked-to-sentinel-node-status

 

Histologic regression in primary melanomas ≥0.75 mm was not associated sentinel node involvement, according to results of a retrospective study

 

The findings suggest that sentinel node biopsy in thin melanomas with regression may not be appropriate without additional adverse prognostic factors, the researchers wrote.

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uhoh's picture
Replies 9
Last reply 7/3/2014 - 10:42pm

Hello,
My new PCP wants me to be seen asap for a suspicious melanoma and not even wait the usual 3-4 months for an appointment. I have had this lesion for years and I can't remember how or when it may have changed. Due to another cancer I have just completed treatment for, this PCP is not ignoring the potential for another cancer. The good news he said is that I've had this 'whatever it is' for years now (ignored several times by another Dr I showed it to), but we know now that I am one who already has had cancer. 

There is a near by plastic surgeon at a community hospital who has multiple openings in his schedule. I like community hospitals and docs. I also want the best diagnosis and treatment. I live a few minutes from an NCCN center where I already see a gyne oncologist.

So far I do not have confidence in the plastic surgeon I have an appointment with. Funny, that I had a choice of appointments for the following day and several other optins for the next few days is somehow not comforting. The plastic surgeon has not published in around 30 yrs and I know that should not indicate his skill and knowledge, but I can't find anything about this Dr except that he is licensed.

How important is it that I see a specialist for an initial consult? How important is it for a specialist to perform a biopsy, or excision? Is the Mohs procedure done on flat upper arm lesions? Would a Dr do a biopsy first and then decide on excision vs Mohs?

What are some questions I might ask during the first consult. I am not even sure if I'll keep the appointment or try to find another Dr. first.

Thanks.

 

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Hi guys,

Who will be the winner of this competition?

As long as you are whith those drugs much better for you....

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/3/2014 - 11:59am
Replies by: Janner

I have 3 large moles on my back, they have been there as long as I can remember so I assume I was born with them. However, one of them had started itching so I went to the Doctor's yesterday and he said that the itching was not a thing but that my moles were too dark and I had to get them removed.

He removed the itchy one yesterday and sent it for testing and I have to go back next week to get one of the others removed.

I have a band-aid over the removed one now but it is still kind of itchy and I don't know if this is because it was removed and is healing or what??

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jualonso's picture
Replies 2
Last reply 7/3/2014 - 10:45am
Replies by: jualonso, leslieann79

Hi guys,

I have read in many places that is possible that fail in inhibitors could affect to response in inmunotheraphys, what is your opinion?

Did someone stop from inhibitors once he reduce tumors, go into inmunotheraphy and if failed, back again to braf/mek with succes?

 

Thanks to all of you.

All togheter we will beat the Beast

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/2/2014 - 1:45pm
Replies by: mbaelaporte, Anonymous

I have stage 4 and have stopped working for about 6 months, currently on the GSK combo. I have successfully obtained copay help through Chronic Fund foundation, for those of you needing help with prescription copay, their approval process is 24hrs. I submitted online application, 2 days later, I was approved. For those of you needing financial help, this is a good place.

I am unsure where to go for help with my mortgage? I don't know if I should tell my lender about my diagnose, I am still current on my mortgage, but finding it harder & harder to make the payments. Has anyone reached out to their lender and obtained a successful outcome?

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Erin_Elizz's picture
Replies 9
Last reply 7/2/2014 - 12:04pm
Replies by: Erin_Elizz, sweetaugust, 5dives, Linny, Anonymous

Hi everybody, sorry for the long post but I would really appreciate some help

I'm having issues with my mentality and emotions right now and I could really use some help or suggestions for dealing with the situation.

A bit of background on me first, I am a twenty year old, happy go lucky university student who does not tan and has no family history of melanom but was diagnosed with a stage one, clark level 4, 1mm deep nodular melanoma on my arm last month.

Trailing a very difficult year abroad, health wise, my melanom diagnosis was just the icing on the cake. I had been studying in London since September 2013 and experienced my first food poisoning, lady issues, two sprained ankles, my first concussion, post concussion syndrome and a family death all within the nine months of my stay. In the last twp weeks of my stay, I was sent to the dermatologist by my GP and they did an immediate excision of the mole, stating that it could not wait for me to arrive back in the states. I was a bit shaken with the sudden in office surgery as I only had thirty minutes, an international phone call to my mother, and four shots of local anestetics to prepare before I was put onto the table with a knife at my arm, but after they finished the only concern I had was how I was going to pack while my arm was stiched up. At that time, the biopsy was the least of my concerns.

Fast forward two weeks later to June 9th, the day before I was sue to fly home: I was called into the office to pick up the slides in order to transport them back to my American doctors. I knew something was up because the doctor called in another doctor right before I was called into office. They gave me the diagnosis; nodular melanoma, and told me that if I were remaining in the UK they would want more surgery due to the clark level of my mole and the fact that at 1mm, I was right on the border of stage 1 and 2. Since I was going back to the US, however, it would be up to the home doctors whether or not we took these further steps.

Now, at this point, I did not even bat an eyelash. I'd done my research (History major in me), and I knew what everything they said meant. I was going to be fine. On June 10th I was on my flight home, and by the weekend I had already had three doctors appointments to review the results and schedule my surgery. (I also had a breast cancer scare, but those results thankfully came back clear, so that worry has now settled).

It is now almost a week after my surgery and it seems like everything has just decided to come crashing down on me. I don't know if it is the struggle of the recovery, the medicine, or the inactivity but all of a sudden my usual happy go luckiness has gone down the drain. When I speak about my situation to my family or boyfriend, I sound like I have a clear head and no worries, as I should at this moment. However, I find that I just can't smile like I used to.

While part of the reason may be because I've been taking the time to browse floppy hats and sun parasols in my down time, with the realization that everything had changed now, the other part of me is frustrated that I cannot seem to be logical about this. There are so many people with worse cases, who have reason to be scared yet are being so much stronger than I am managing to be at this moment. I was being strong, I was handling it well, but now, despite almost being in the clear, I am scared, angry, and so many other emotions that I cannot express to my family in order to keep them from worrying.

 

I wan to be me again, I want to be happy. I don't want to feel as if any self confidence I ever had has been squashed or that I'm all alone when I know I'm not. I want to be strong again. I just don't know how. Anyone have any suggestions?

 

Thank you!

Erin

 

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Hi,

I had a mole removed a month ago and was diagnosed with invasive superficial spreading malignant melanoma.  I went back a couple of week later for a wide local excision and I had the stiches out 2 weeks ago.  I have just managed to get a copy of my first pathology report and it says the following:

Ellipse of skin measuring 16x7mm with 4mm of underlying tissue.  On surface there is a slightly raised roughened pigmented area measuring 5x5mm

HISTOLOGY

The sections show skin with underlying adipose tissue and containing invasive/vertical growth phase superficial spreading malignant melanoma.

It is predominantly in situ but there is focal regression.  The small amount of invasive melanoma has a Breslow thickness of 0.4mm and infiltrates the dermis the Clark's level II.

No vascular invasion is seen.

There is a moderate tumour associated lymphoid infiltrate.

Dermal mitotic figures are not seen.

There is no surface ucleration and satellite lesions are not present.

The lesion appears completly excised with the nearest transverse margin at 2mm and the deep margin at 4.5mm from the invasive component.

I have a couple of questions and would appreciate it if anybody could help me:

1. Does Invasive and Vertical Growth Phase mean the same thing?

2. If it has had regression, does that mean it could have been deeper before my immune system attacked it and therefore could have already gone elsewhere?

3. It says the deep margins is clear by 4.5mm but it says only 4mm of underlying tissue was removed and if bresolow thickness 0.4mm  then that doest add up exactly.

4. Should I have had my glands checked as I havent and I will be getting them checked in 3 months time?

I may be looking in to this all too much but ive felt so unwell with asthma and stomach pains, it makes my imagination run away with me and I start wondering if its maybe something worse.

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/2/2014 - 9:22am
Replies by: SBeattie, BrianP

I erroneously scheduled an out of town vacation over a day when I would normally get my every two week infusion of well, we're not sure, in trail of ipi x4 plus nivo x4 then every two weeks; nivo only; ipi only followed by placebo...had to miss one infusion in April due to endocrinopathy side effect...trial folk say postponing upcoming infusion by one week won't affect response...anyone out there have any input? would you change vacation dates? scans have shown shrinkage in lung mets; fortunately no other organs involved...thanks so much to ALL OF YOU!!!

Sally

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Anonymous's picture
Anonymous
Replies 0
After meeting with my dr- this test tested the genetic make-up of my specific melanoma tumor to check the likelihood of reoccurrence. It came back that mine is highly likely. Do any of you know of a test that is valid like this? I posted the link in my last post- it is skinmelanoma. do any of you know of a test like his that is valid? Because now I am scared to death. 
 
Thanks for all your insight.

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Anonymous's picture
Replies 5
Last reply 7/1/2014 - 4:36pm
Replies by: adriana cooper, Ginger8888, Anonymous, Julie in SoCal

I've been on an Ipi 3mg/kg trial for three weeks now (for stage III, post-surgery adjuvant), but so far I've not felt any different. How long did it take for you? What side effects did you get?

I heard getting white hairs is a good sign so I'm hoping to see those... especially since I've no measurable tumors so there's no other way to know if it's working.

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Subject: Viagra Melanoma Lawsuits
 
Viagra Melanoma Lawsuits

Viagra has been linked to nearly a doubling of melanoma, a deadly form of skin cancer, in men who used the erectile dysfunction medication, according to a recent study.

If you or a loved one suffered melanoma after using Viagra, you should contact a Viagra attorney for a free and confidential review of a potential Viagra lawsuit.

Kline & Specter, P.C., with more than 30 lawyers, several of whom are also highly skilled medical doctors, has the experience and expertise to litigate pharmaceutical injury cases. The firm was a key player in the $4.85 billion Vioxx settlement and has won large settlements in lawsuits involving medications.

Nearly 10,000 people die each year of melanomoa, with some 76,000 new cases diagnosed annually. Two-thirds of those who die are men.

The Viagra study, published in the Journal of the American Medical Association Internal Medicine, found that men who took Viagra were 84 percent more likely to develop melanoma. The study, whose subjects included 26,000 men with an average age of 65, showed an increase in melanoma among Viagra users even when the findings were adjusted to take into account other variables, such as family history of skin cancer and exposure to UV rays.

One author of the study, Dr. Abrar Qureshi, chairman of the dermatology department at Brown University’s medical school, was quoted as saying that Viagra may increase the risk of melanoma because it affects the same genetic pathway that allows skin cancer to become more invasive.

 

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/1/2014 - 2:13pm
Replies by: Ninniditti, Anonymous

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