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 7
Last reply 8/4/2013 - 11:35am

Hello Everyone!

There has been a fair number of posts/discussions lately by those of us who have or are caring for someone in stage IV with brain mets. Often the posts and discussion have been centered around being denied access to clinical trials and having to undergo some sort of brain radiation in combination wth Ipi and concerns about the efficacy of WBR and Ipi's lag time before showing any effect. I've been following many of these posts and replied to several myself as I found myself with 7+ brain mets in June and denied access to PD-1 trials. Due to the number of brain mets I ended up going with WBR starting concurrently with Ipi and my doctor decided to add on self injections of GM-CSF for 14 days after each dose of Ipi. 

I recieved my 3rd dose of Ipi one week ago, and had my one month post radiation MRI this week and just got home from the results appointment. I wanted to share the good news and possibly give some hope to the others out there that are dealing with the worry that comes along with stage IV with brain mets. They were expecting my one month follow up scan to be more or less the same as my pre-radiation scan, with reduction in tumors hoped for for the 3 month follow up MRI. Today I got an early gift: There are no longer any areas of concern on my meninges and of the 7 visible masses that were there before on only 4 are still visible and those are so faint/subtle they may just represent scar tissue. It's a much better result than anyone was hoping for for this scan and I'm on cloud 9!

So hang in there everyone! There is always hope and good things do happen!

-Eva

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ClaudeM's picture
Replies 15
Last reply 2/19/2014 - 7:16am
Replies by: ClaudeM, Anonymous, Bubbles, Cooper, lanasri, POW

Diagnosis: Nodular Melanoma, Breslow 5mm, Clark IV, no ulceration, no periphereal lymphoadenopathy. T4NoMo.

I was on Biological therapy with interferon alpha 2b. I went through the induction phase. 5 days a week 30 MIU  INTRON A intravenous.

Wow was that a living hell or what? My liver was so damaged by the end of the month that my doctor thought i had Hepatitis. My ast/alt were like 450, and 420.

The second phase was better, but still pretty damn bad. 18 MIU INTRON A 3 days a week for eleven months, subcutanously with Multi Dose Pen.

I remember I thought that eventually it will get better , headache, nausea, fever, leg pain but it's didn't. I mean, the fever was not so severe as it was in the begining but everything else just stayed the same.

Now i am doing a research of real life stories of how everyone handled their dose of "liquid hell".

Please, if you went through a therapy with Interferon, Roferon, Peginterferon, tell me how you dealt with it. What were the side effects? Did anyone found a way to deal with some of them?

Also, if you are about to start this treatment , please contact me and i will help you with all i know about it.

It's good to be here on this site, i don't know why i haven't found it sooner.

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chalknpens's picture
Replies 9
Last reply 8/2/2013 - 8:36pm
Replies by: Janner, chalknpens, Anonymous, JerryfromFauq, POW

Hi again,

I'm sixty-three years old. I have had five sites surgically removed:two melanoma, two basal and one squamous. I have a sixth site (squamous) about to be removed next week from my chin. The largest melanoma, on my back, was a wound the size of a softball when it was finally closed nearly a week after beginning the 'slow Moh' surgery. I now have the "mark of Zorro' on my back, the scar left after about 70 sutures there.

I am also diagnosed with multiple sclerosis. I am heat intolerant, and this has been a brutally hot month in Massachusetts. I'm not  a summer person; never have been. I did take nightly injections which targeted my strong immune system, and I believe weakened it. Following that, the skin cancers began appearing. I no longer inject. Doctors still prescribe the injections, though ten year studies have proven them ineffective.

The surgical sites are all far from each other; right shoulder, left back, left forearm, right shin, left calf, and now my chin. My dentist is also watching a rough spot under the side of my tongue that becomes irritated when i eat hot food. He'll see me again in two weeks to follow up on that.

My face has changed in shape from an oval to an inverted triangle. My cheeks are hollow. I have brown spots on my right cheek, near the cheekbone. I fear that we will continue finding these sites and surgery will be never ending. I've had eight Moh surgeries over the past year at theoe five sites.

I am so very conscious that others here are in more serious condition, and I apologize for coming back again with what may be trivial worries. I'm just wondering if the fatigue and general sense of weakness is too easily attributed to the diagnosis of MS, and perhaps that easy assumption is mistaken.

I do take a maximum dose antidepressant for clinical depression and anxiety. I began that two years into the MS injections.A psychologist tells me that I have PTSD following the diagnosis of MS, the war death of my nephew in Afghanistan, death of my sister and brother of unrelated diseases (kidney failure and lung cancer.) And my unexpected, unplanned for early retirement that limited my pension, etc. etc. etc.

I'm worried that the skin cancers are widespread throughout my body and perhaps I actually have 'cancer' with the capital C, rather than 'just' skin cancer.

And I'm worried that I'm making too much of this.  I'm still on a three month schedule of dermatology visits for cursory skin exams. He generally asks me if I have any spots I'm concerned with, and then spends about 40 seconds looking at my skin top to bottom, back and front. I'm in and out (other than the time spent changing into the paper towel 'gown' and then back into clothes) in less than three minutes time with the dermatologist.

Is this what is supposed to be happening? I am reluctant to tell him of any sites myself. I just spent a month hiding from the sunlight due to a strong reaction to Picato, which the dermatologist tried instead of more cryosurgery (I've had dozens of cryosurgeries between real surgeries.)

Any thoughts? Tell me to sit down and shut up? Pat my on the shoulder? Could this be real Cancer?

I am not perfect, but I am enough.

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Well the fun never ends around here. My husband has been having a rough time for the last couple of weeks with all these side effects (extreme fatigue, shortness of breath loss of appetite, bad taste in mouth) and I did some research on all the drugs he is taking and found out that the Melanoma Drug, Zelboraf and the drug our Doctor at Moffitt prescribed for the thrush in his mouth, Fluconazole is a Level 1 contraindication, which means when these two drugs are combined it can have severe side effects up to and including life threatening.

Needless to say I called the specialty pharmacy where the Zelboraf is dispensed and talked to a Pharmacist and she verified that it is a "BIG NO NO" to take these drugs together. We get the Zelboraf from a Specialty Drug Department and all our other prescriptions are filled at our local pharmacy and I "assumed" they were both connected and if any drugs should not be taken together they would let us know. Well the two departments computer systems of the same Pharmacy are not integrated. Who would have thought?

I have called Moffitt and talked to the head nurse who was very vague in her responses to me and said she would talk to the Oncologist when she was back in tomorrow. The Pharmacist had told me it will take about a week to 10 days to get all the Fluconazole out of his system but he should see many of his side effects cease when it is out of his system.

I just cannot believe that our Oncologist prescribed this medicine for the thrush in his mouth when there is such an interaction with the Zelboraf. I can't wait to hear her explanation.

My lesson learned in this is that I must be completely on top of everything that is going on with him and not just take things for granted - Do your research and ask a lot of questions. I thought I was but I never saw this one coming.

I just hate that he has had to go through all this for someone's lack of knowledge or error.

We are in it to win it!

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http://forums.poz.com/index.php?topic=15632.0;wap

9 pages long.  I am still reading it.

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

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Everymoment's picture
Replies 11
Last reply 8/2/2013 - 7:02pm

Keeping my fingers crossed. The guy doing the scan said I did a nice job of holding still. I then replied, "did I light up???!" He said that question was above his pay grade. It's crazy that right now someone knows what's going on with my body and I don't! 

Thanks for all of your nice thoughts!

Isabell

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Hi All,

The MRF is working on an expanded educational initiative that would require the expertise of a nurse or nurse practitioner who specializes in melanoma. He or she would need to be able to speak comfortably in front of an audience and be knowledgeable on topics like: managing treatment side effects, lymphedema, psychosocial issues of a diagnosis, etc.

I am looking for recommendations from you. Has anyone had a really wonderful experience with a nurse or nurse practitioner? If so, please let me know by emailing me directly at smoneer@melanoma.org. Thank you in advance for your thoughts!

Sincerely,

Shelby - MRF 

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Zippydodah51's picture
Replies 1
Last reply 7/31/2013 - 11:14am
Replies by: hbecker

Hi, I am writing for my sister Roberta. She has stage 1V Melanoma. Her tumor is to large to do surgery. They just started her on this drug. She is having bad side effects & had to stop it for now. Severe joint pain & burning feet. Anyone else been on this trial drug?

I am trying to learn all I can to help my sister.

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awillett1991's picture
Replies 7
Last reply 8/1/2013 - 10:03am

Scans show no new signs of Mel and cardiac tumor is shrinking just enough to stay on the trial. I will rescan and they will reevaluate in 6 weeks. The worst side effect is fatigue. I also have chills in the evenings and sweats at night. I'm having trouble w my protein, my ALP, and hemoglobin keeps dropping below 9. Otherwise, much easier than other therapies I've tried. I am thankful to God for every day.

Amy

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Tim--MRF's picture
Replies 5
Last reply 8/1/2013 - 8:10am
Replies by: Phil S, casagrayson, Anonymous, Charlie S

The FDA has proposed more stringent control of tanning beds, citing extensive data showing the ties between UV exposure and skin cancer, including melanoma.  Their proposals are currently open for public comment, which must be submitted by August 7.  

So far they have received over 500 comments--more than 300 of which have been written by owners of tanning salons.  In other words, 60% of the comments are from people who are arguing against the new restrictions.

If you believe we need better control of tanning beds, you can submit your comment to the FDA.  This site gives all of the details:  http://www.melanoma.org/learn-more/your-action-needed-fdas-proposal-reclassify-tanning-beds

Just a quick word on why I am asking you to consider this.  We know that not everyone who tans gets melanoma, just as we know that not everyone who smokes gets lung cancer.  But we also know without a doubt that tanning elevates the risk of skin cancer, including melanoma.  The best estimates I have seen suggest that at least 80% of all melanomas are tied to UV exposure.  That might not be the only factor, but it is a significant factor.  We know that tanning beds emit levels of UVA and UVB, and that those levels can vary widely from bed to bed.  We know that tanning creates a low-level addictive response.  And we know that tanning salons are marketed to young people.  

In short, we have a known carcinogen that is addictive and is being sold to teenagers.  

Tanning salon owners argue that these regulations will hurt business, and that they reflect a "nanny state" mentality.  I am a big proponent of freedom and am typically skeptical of increased government regulation.  Having said that, we as a society have determined that the unbridled sale of harmful items is not OK.  A hundred years ago, stores routinely sold Laudanum (opium) to anyone who wanted it, and the bottles included dosing information for children as young as 3 months old.  Now that is illegal, just as it is illegal to sell cigarettes to 8 year olds and whiskey to 12 year olds.  When a business owner engages in selling an addicitive carcinogen, they should expect increased scrutiny and regulation.  

OK, enough of the soap box.  Please look over the information in the link, and consider sending in a comment.  It is easy and can be done online.  Believe me, in this matter your voice counts!

Tim--MR

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Lori Stoen's picture
Replies 7
Last reply 8/4/2013 - 9:43pm
Replies by: Lori Stoen, ecc26, Gene_S

Wondering if anyone is in the trial GM-CSF / Yervoy ?? My dad was givin this as an option or to use the regulated dose of Yervoy... Wondering how the side effects are... Or  just anyone with the Yervoy side effects would be helpful.. We are so undecided ... Dad feels good now and is active doing many things at the age of 80 and he does not want to give in..... And I am in total agreeance with him. I just dont want to see him sick and I dont know if that triple the dose of the trial would be to much... Any suggestions from ppl that have been on either ?

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Lori Stoen's picture
Replies 4
Last reply 8/1/2013 - 9:21am
Replies by: DEK, Lori Stoen

Wondering if anyone is in the trial GM-CSF / Yervoy ?? My dad was givin this as an option or to use the regulated dose of Yervoy... Wondering how the side effects are... Or  just anyone with the Yervoy side effects would be helpful.. We are so undecided ... Dad feels good now and is active doing many things at the age of 80 and he does not want to give in..... And I am in total agreeance with him. I just dont want to see him sick and I dont know if that triple the dose of the trial would be to much... Any suggestions from ppl that have been on either ?

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buffcody's picture
Replies 2
Last reply 8/1/2013 - 2:12am
Replies by: JerryfromFauq, POW

Just wanted to share on a separate dedicated post the fact that a full genetic sequencing of my most recent tumor showed BRAF as positive.  First two testings, one in July 2012, the other a few months later, indicated BRAF wild type.  In fact, the second one was done precisely for the purpose of seeing if the first one might have been incorrrect.  My oncologist said that the BRAF showed up in an unlikely place on the tumor (genes?).  He also indicated that there were other peculiar findings.  The analysis is probably a very accurate one as it has been done by one of the leading genetic sequencing labs in the world at the University of Michigan.  I'm looking forward to finding out more.   I hope soon.  This is one crazy disease.  But sometimes there is good news to report.  Like being eligible for treatments that I thought myself ineligible for.

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mclaus23's picture
Replies 2
Last reply 7/30/2013 - 3:41pm
Replies by: mclaus23, NYKaren

My dad just started Z yesterday morning and had had vomiting and diarrhea. Has anyone experienced this so soon with Z or at all?

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DonnaK's picture
Replies 5
Last reply 7/29/2013 - 11:23pm

HI All-  My husband, John, has Stage IV melanoma with mets in his lungs, lymph nodes and brain.  He was on Zelboraf for 7wks but had to stop due to significant liver toxicity.  While waiting for his liver to recover (~2wks), his brain mets re-grew (they had shrunk considerably after just 3wks) to as big or bigger than the original size.  As a result, we chose to start WBR immediately and are hoping to add in Ipi at the end of this week.  (Sadly, SRS is not an option right now as the number of mets are "too many to count", although they are reasonably small.) Has anyone else been through this combination?  If so, at what point did you add Ipi and how did you control the swelling?  John is on 5mg of prednisone as he has minimal swelling, but woke up this morning with a terrible headache.  The radiologist wants him to increase his steroids to control swelling but the oncologist wants him to taper off the steroids to maximize the ipi effect.  For today, he settled for oxycodone which seemed to control the pain, but I suspect the swelling will only continue, particularly if the treatment works.  I'm trying to avoid increasing the steroid level because we will have to delay the Ipi another week, but I also can't stand seeing him in such pain. Any advice??

Also, if anyone has some positive stories with WBR and/or ipi on brain mets, I could really use a happy story to alleviate this nightmare we are living.  

Thanks!!

Donna

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