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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jmmm's picture
Replies 1
Last reply 12/3/2011 - 7:09pm
Replies by: momof2kids

I posted a couple of weeks ago about being scared of my hubby's craniotomy. Thanks for all the kind words. He sailed through the surgery and came home 48 hours after arriving in the recovery room. Simply amazing. He was walking the halls the next day. So far, no side effects and he's only taken 3 pain pills since leaving the recovery room. There really hasn't been pain at all for him.

So, now he's gearing up for gamma knife on the 22nd. His tumor was 5.5 x6.5 cm. And the doctor couldn't get it all safely with the craniotomy. Any advice on gamma knife would be appreciated.

Also, the pathology came back and shows that the cells were malignant and were shown to have been treated and in the process of dying. This proves, at least in him, that Zelboraf DOES pass the blood brain barrier.

The oncologist has mentioned Temador. He was going to consult with some other specialists, but is anyone using Temador and Zelboraf to help prevent additional brain tumors?

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Bubbles's picture
Replies 6
Last reply 2/12/2012 - 8:28pm
Replies by: Anonymous, Bubbles, boot2aboot, Cooper, momof2kids

FYI - from my blog.....

This month marks a full year of my being under anti-PD1 treatment (MDX-1106 by Bristol Meyers Squibb) combined with vaccines at Moffitt in Tampa. However, anti-PD1 is now in development by 5 companies (BMS - MDX-1106, CureTech - CT-011, Merck/Scherring Plough - MK-3475/SCH 900475, Amplimmune/Glaxo Smith Kline - AMP-224, Genentec - no drug name yet).  However, the Genentec drug is technically an anti-PD1 ligand.  Trials for all of these include my BMS combo with vaccines at Moffitt as well as a new CureTech trial opening at Moffitt.  CureTech is also opening trials at Yale, Dartmouth, and locations in New York, Boston, Europe, and Israel. Merck/Sherring Plough is opening sites in San Antonio, Houston, Los Angeles, San Francisco, and Toronto.  Amplimmune will have sites in Detroit, North Carolina, and Nashville. BMS also has trials in New York and at Yale. 


So far, BMS has been in the lead with trials already in process, but it looks like game on for the rest of them.  Hope, they know what they are doing and there is real promise here.  Usually pharma knows where to place it's we will data remains hard to come by....more on that next..... 

Best wishes to all......Celeste

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momof2kids's picture
Replies 13
Last reply 12/7/2011 - 7:21am



Hello everyone. I haven't posted lately as I've been so scared, wondering if this Yervoy was going to work on me!


Diagnosed in June 2011, out of the blue, straight to Stage IV (Brain, Liver & Lung)

I got all 4 injections of the 3mg dose with not a single side effect from September 2011 thru Nov 2011 I thought for sure maybe my body wasn't responding!  I never understood the blood levels, that others said to look for rising numbers, I just gave up trying to figure it out and just figured my body will do whatever it wants.

GREAT NEWS!!  We saw the scans ourselves today! My lung & liver tumors have all shrunk down, can barely see the Lung tumor (was around 5cm), and the big Liver tumor went from 6cm down to 2cm...and this is the 1st scan since completing the 4 doses!
We can only hope that another scan in 3 months will show more shrinkage!
Brain scans came back CLEAN TOO! Quarter size tumor GONE (thanks to Gamma Knife in July, took almost 6 months to disappear), and the spot I had my tumor removed from on my brain in July, is back to normal looking!
All doctors happy FOR NOW, AND SO AM I!! 3 months of NO treatments or scans for now!
This treatment , the body "remembers" this type, and should continue to kill cancer cells it finds, and I can continue on this treatment again if needed, since my body accepted it!  There's no plans for future treatments of it until they see the need to continue on it, then I can continue to get it after that since my body accepted it once, it should accept it over & over.

I truly hope, like Lisa13 said in her post (that her doctors said) he's had patients who were on this for YEARS, and it was still working. I can only truly pray & hope that this will be the same way for many of us!

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Donna1963's picture
Replies 4
Last reply 12/9/2011 - 3:28am

Hello, my name is Donna.  The personal stories here are heartbreaking. My heart goes out to all of you. My mom has a large spot on her cheek. She went to a Dermatologist and she said that it was Melanoma and did a biopsy. It was so difficult to watch her in so much pain. The doctor said she had the bad kind of skin cancer and that they need to find out if it has spread to her lymph nodes or anywhere else in her body. I'm sure that a Dermatologist knows what it looks like but could she be wrong? My mom has had this spot for at least a year but it wasn't that big and has grown quite a bit. Her twin sister had skin cancer as well as her other two sisters. All three of them said it wasn't Melanoma. Can this type of cancer be hereditary?  





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Anonymous's picture
Replies 1
Last reply 12/2/2011 - 11:49pm
Replies by: Charlie S

December 1, 2011 — Vemurafenib (Zelboraf, Plexxikon/Roche) should not be used outside of its labeled indication for certain melanoma patients, a group of oncologists writes in an editorial published online November 7 in the Journal of Clinical Oncology.

They say that this new drug and other RAF inhibitors could theoretically cause second cancers over time.

Vemurafenib was approved by the US Food and Drug Administration this year for the treatment of metastatic melanoma in patients with BRAF mutations, and has wowed the oncology community with its efficacy.

Consequently, clinicians could be tempted to try the drug in earlier-stage BRAF-mutant melanoma patients, especially those with high-risk surgically resected disease, suggest the editorialists, led by Mario Lacouture, MD, from the Memorial Sloan-Kettering Cancer Center in New York City.

But second cancers are a potential concern in earlier-stage melanoma patients, who will likely live longer than the typical patient with metastatic disease (9 to 12 months), they warn.

Interestingly, the second cancers of concern are not keratoacanthomas (KAs) or cutaneous squamous cell carcinomas (cSCCs), which have been cited as adverse events in clinical studies of vemurafenib. The editorialists are not especially worried about these 2 skin cancers, which develop in up to one third of all vemurafenib-treated patients. They explain: "The KAs and cSCCs that arise in the setting of vemurafenib treatment are of low metastatic potential, often regress spontaneously, and are easily cured by surgical resection and/or destructive methods (cryotherapy or electrodessication/curettage)."

Instead, there is a theoretical concern about tumors at other body sites.

"It remains unknown whether vemurafenib or other RAF inhibitors will promote the growth of dormant RAS mutant tumors of the lung, pancreas, or other sites," write Dr. Lacouture and his colleagues.

They explain that there is evidence to suggest that vemurafenib promotes the "hyperproliferation of preexistent dormant RAS mutant cancer cells."

How Lung, Pancreas, and Other Cancers Can Occur

To understand how selective RAF inhibitors such as vemurafenib can cause other tumors, one needs to look at an accompnaying genomic analysis of 237 cSCCs and KAs, 19 of which were from patients treated with RAF inhibitors (either vemurafenib or sorafenib), the editorialists explain.

The cSCCs and KAs from patients treated with RAF inhibitors have a mutational profile that is distinct from those that arose sporadically or as a result of treatment with immunosuppressive agents, say the editorialists. Specifically, 21.1% of KAs and cSCCs resected from patients treated with RAF inhibitors were found to have activating HRAS mutations, whereas RAS mutations were rare (3.2%) in tumors that developed in the other patients.

These study results, along with "the rapid appearance of cSCC and KA after initiation of vemurafenib," suggest that the "induction of RAF signaling" by vemurafenib promotes the growth of dormant RAS mutant cancer cells, the editorialists write.

There might be good news for melanoma researchers in this genomic analysis, say Dr. Lacouture and his colleagues. These results might "guide the development of combination strategies" in melanoma, which could result in the synergistic antitumor activity and attenuated toxicities that occur with either drug alone.

In support of this concept, they refer to a recent phase 2 study of the combination of the MEK inhibitor GSK1120212 and RAF inhibitor GSK2118436 in metastatic melanoma. The study, which was presented at the 2011 annual meeting of the American Society of Clinical Oncology, and covered at that time by Medscape Medical News, showed that the toxicity of the combination seemed to be lower than that of either agent used alone.

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HelperDaughter's picture
Replies 2
Last reply 12/3/2011 - 3:20pm

I've lost two posts now and I'm ready to scream!!  Ctrl+C, Ctrl+C....

Anyway, my question has to do with small intestinal mets and surgery. my mom had mets to brain (removed with SRS & a craniotomy), lungs, and a lymph node.  worst of all, she has a met or mets to her small intestine.  for months now, it's been bleeding and she needed biweekly transfusions of 2 units.  the surgeon said the mass was resectable, but that if "all" she was needing was 2 units every 2 weeks, to stick with that because the surgery would be a rough one.

now, she needs 2 units every week.  it seems like the met is progressing, which is totally depressing since my mom's been on ipi.  she was supposed to see the melanoma specialist yesterday to talk about her first post-ipi scan, but that had to be postponed to mid-december because on Tuesday my mom had a craniotomy for her second brain tumor (the first was 100% eliminated with SRS, and the surgeon said she got all of the second one but wants to do radiation anyway). i almost don't want to know what the PET scan says - i think none of us think it will be good news.  how can it possibly be when she developed a second brain met, has worsening blood loss and the lymph node is still there, all at 20 weeks??

anyway, i feel like this intestinal met is robbing my mom of her will to live and that all of the symptoms she's having are related to it. since she's anemic all the time she's constantly fatigued.  in the past month she's pretty much lost her appetite.  she has severe gas/burping and abdominal pain when eating certain foods.  prior to the craniotomy she did not have nausea and vomiting, but now she does.  she doesn't wretch, it just "comes up" like her body is rejecting all nutrition.  it's so scary.

maybe it's stupid but i feel like this intestinal surgery would be the magic bullet.  if she's not bleeding all the time and anemic, she won't be tired, and if her abdominal symptoms resolve she won't be so miserable.  apparently it would be a bad surgery, though.  it's can't be done laparascopically, so she would have to stay in the hospital for a week and then essentially be on a three-week liquid diet.  this craniotomy business made her miserable and i'm so scared she's not going to want to do the abdominal surgery. if she doesn't do the surgery, she won't feel better and get stronger and potentially want to try some other type of treatment (assuming the ipi is a wash).

anyway, this is a long post to just basically ask if anyone has small bowel mets and abdominal problems/internal bleeding, and/or if they've had small bowel surgery for mets, what it was like, etc, did the symptoms resolve, you know.  


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Lisa13's picture
Replies 1
Last reply 12/3/2011 - 8:31am
Replies by: momof2kids


I wanted to let you know how happy I am to hear your good news!!  I know this feeling very well and I hope you and I can continue good scans for a long time.


Many impossible things have been accomplished for those who refuse to quit

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Lisa13's picture
Replies 1
Last reply 12/2/2011 - 7:53pm
Replies by: FormerCaregiver

After getting good news on my CT scan from ipi, my blood work showed something completely different.  4 weeks ago, my blood work was great - high lymphocytes and normal blood work in general. After my CT scan, it was all different - low lymphocyte, high WBR, low everything else.  My oncologist is looking into this and wondering if the prednisone I took 13 hours before CT and 1 hour before had anything to do with it. He's also questionning if the gamma knife treatment I had 2 weeks ago is causing some changes in my bloodwork due to inflammation, etc. I feel good, but now worried about these blood tests. How can I sit here and feel good about my CT when my blood work is telling a different story??  All I can think of is my brain now, but they didn't want to scan me again (last scan was 2.5 weeks ago) unless I had symptoms.  Funny thing is, I never had any symptoms when they found the 2 in my head.

I'm too much like a Dr. sometimes when it comes to bloodwork, treatment, etc. I know so much about this disease, that I sometimes surprise my oncologist with some of the medical questions I ask. When you're fighting for the longest life possible, you do everything you can, not to mention your due dilligence!

I truly think my blood work will return to normal in a couple of weeks. Since the day I had my blood work done, it was right after 2 prednisone, benadryl,  CT scan iodine and major stress - not to mention the gamma knife radiation I just had 2.5 weeks ago. Yesterday, my Dr. said "Have a Merry Christmas, your scans look good" and now I"m letting myself get stressed again. 

Just so know, 4 weeks ago, my lymphocytes were 1830 (1.83) and now they're 0.58!!!


Many impossible things have been accomplished for those who refuse to quit

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justlittleoleme's picture
Replies 9
Last reply 12/5/2011 - 9:14am

My husband was randomized yesterday and he received the ipi arm of the trial!

First infusion is Monday.

Any suggestions for what I can do to alleviate symptoms?

What can we expect after the infusion?


We don't know how strong we are until being strong is the only choice we have.

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AngelaM's picture
Replies 6
Last reply 12/2/2011 - 5:06pm
Replies by: lhaley, AngelaM, Janner, Gene_S

I have just recently been diagnosed with my 3rd primary melanoma in 2 years. The first diagnosis was in Oct 2009 as melanoma in-situ (chest), the second in Jan 2011 as 0.24mm Clark II (upper back) and the 3rd in October 2011 as 0.45mm Clark III mitotic rate 1 (lower back). I live in South Africa, where melanoma is almost unheard of amongst the lay person. Although my doctors are very helpful and caring and they answer all of my questions, I just can't help feeling desperate. I don't understand why I have had so many primary melanomas in the space of only 2 years, and why each one is worse than the previous one. My dermatologist checks me out every 3 months and I have mole scans etc, but still the 3rd one came up out of normal skin (not even a pre existing mole) and wasn't there at the end of June 2011, when I had my last full body photographs taken! I can't believe that it could have grown so fast! It appeared out of nothing in less than 4 months!

No one in my family has ever been diagnosed with a melanoma, but my doctors still say that I must have a hereditary predisposition.

Is it common for people to keep on an on getting new primaries? Is it likely that my last one could have spread (being Clark III)?

I have a 1 year old son and I need to be around long enough to see him grow up, but with a new melanoma popping up out of the blue at every turn I feel less and less positive about my chances.

I also feel like I've become obsessed about this. I think about it all the time. I battle to concentrate at work, and I can't sleep at night because I'm always imagining that I have another invasive melanoma lurking. I check my skin all the time, but that makes it worse because I could swear I see new dots. I'm also paranoid about any pain and I constantly look for lumps under my arms and in my groin. I'm driving myself crazy!

Thanks for any advice


Don't sweat the small stuff. Differentiate between what's important in life and what's not.

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Denise's picture
Replies 5
Last reply 12/3/2011 - 6:39pm
Replies by: Anonymous, eaca, Denise, DonnaK, Fen

Hello.  My mother was recently diagnosed Stage 2b and is having surgery on December 14th.  Her doctor (Dr. John Kirkwood in Pittsburgh) has recommended interferon therapy following.   I've researched it and it does seem scary.  I'm particualry curious if anyone has personal experience with an older patient on this treatment?   I understand there will be side effects, and that all patients react differently, but any insight/advice would be greatly appreciated.

Praying for a CURE not only for my mother but for all melanoma patients!   St. Jude, please pray for us.

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Kim41's picture
Replies 11
Last reply 12/7/2011 - 11:52pm

I had lymph nodes removed from left groin 3weeks ago and now noticed a hard lump beside lower part of incision. Has anyone ever had this. I dont think its scar tissue and it feels hard and oblong. Worried its a lymph node they may have missed. I still have my drain in and it seems to be working fine. I will call Doctors office in am. Just thought someone may have has this same problem. Thanks.

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Steffiellie's picture
Replies 2
Last reply 12/3/2011 - 9:54am

Hi there,
I'm a 31 female with stage 3 melanoma. I'm currently in my 7th month of intron a @15million units. I have had the majority of the side effects and have been unable to work throughout this process. It sucks, and I feel weak and tired all the time, but I know it could be much worse! Sometimes the days fly by, sometimes the weeks drag, but we carry on and make lists of fun things to do after interferon!!
The last couple months I've had heart palpitations quite regularly and my oncologist says it's not related to treatment. I was very active, athletic and healthy before all this. I'm curious how it could be unrelated.... I'm pretty sure I've gone into Afib with HR 182 as well but ER couldn't catch it. I've increased my fluid intake in case it was dehydration to no avail. I've finally seen my family doc to get an echo and holter monitor and see what's up, but i worry what effect this is really having on my heart long term? Has anyone had experience with cardiac complications? I wonder whether my dosage should be tapered?
Suggestions, advice are welcomed!

Life is precious and it's way to f*cking short. Don't delay the happy. (Cathy -The Big C)

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alicia's picture
Replies 2
Last reply 12/7/2011 - 2:54pm
Replies by: Anonymous, MariaH

I posted earlier about my friend who just found out melanoma has spread to liver, splee, and spine. He just started radiation today, getting 10 doses to the spine then the oncologist wants to start him on temodar when he finishes radiation. He is braf positive and I would think she would recommend one of the newer braf inhibiting drugs. He is seeing his local oncologist who is not a melanoma specialist because he's not well enough to travel to Vandy to see his Mel specialist. I recommended he at least call his dr at Vandy to see what treatment they would suggest or have his local dr make a suggestion. What are your thoughts? Are any of you doing temodar in this similar situation and are you seeing good results? That's so much for your time and help. Much love!!!!!

Alicia stage 3 w/ mult primaries

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robbier's picture
Replies 6
Last reply 12/7/2011 - 4:23pm

Looking for patients that are either being currently being treated with interferon alfa or have been on this drug to see how it affects them, it has been recommended that I use this therpy and will go back and see myDr. on Dec 13th to give him my answer.    Any replies would be most appreciated at this time.

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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