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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emilypen's picture
Replies 3
Last reply 8/23/2010 - 3:05pm
Replies by: emilypen, Terra, Lori CO

Hi All,

My husband is about to start a combo trial of BKM120 ( a P13K inhibitor) and GSK1120212 ( a MEK inhibitor). Just wondering if anybody on the board has taken either of these drugs separately? and if so what were the side effects and results?

Hubby is stage IV with bone mets and 1 soft tissue tumour, and about to start radiation for the bone mets pain this week.



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sharmon's picture
Replies 13
Last reply 6/22/2011 - 5:26am
Replies by: PeterS, Anonymous, triciad, Rocklove, King, Lori CO, sharmon, emilypen

Hi  An update on Brent,  He has been on the trial since Feb.  He is feeling good and is still working with a Local derm on antibiotics and creams to help with the really really bad rash.  The derm here in Bradenton Fl  was instrumental in producing a cream that is being tested in a trial in CA for inhibitors induced rash.  He is really looking better each day. 

Anyway overall 30 percent reduction and no new mets.  

The week before his scans and the week after the scans  we moved out of our house and into a motorhome.  We are going to travel for 2 months.  He was tired but it was doable for him.

We are Blessed.

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Knutes Pam's picture
Replies 7
Last reply 8/23/2010 - 11:51pm

Knutes brain bleed has stopped and he has been moved to a regular room for observation.  Speech comes and goes as does understanding of what he hears.  He wanted to know WHAT foreign language he was speaking-- since we couldn't understand him.  If I only knew the answer! It was english I'm pretty sure.  Still right side involvement.  As the blood moves a bit he can sometimes close his right hand if he is looking at it.  He can't do it at all if asked.

I'm hoping for more in the way of answers on Monday. 


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I would appreciate a response from the lady whose husband has completed 3 rounds of IPI.  She had a reply to Nancy on 8/18/2010.

My Dr. has entered my name for a clinical trial for IPI.  He said they might not accept me or rule me out for some other reason.

And they kind pick canidates on the lottery system. I have had Melanoma for 4-5 year .For awhile it did not grow but has started again.

I have just finished 3 rounds of Termodar and it didn't do much good.  My problem is I am a 78 yr. old male with serious heart disease

so might not be able to tolerate IPI. I am curious as to your husbands age and his state of health before starting IPI. My Dr. said I may have

to make a decision within 2 weeks.  Hope to get a reply from you. You may email but I don't want to post my address on the forum. Thanks

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Tracey FL's picture
Replies 1
Last reply 1/13/2012 - 8:28pm
Replies by: Theresa123

I am finally back on line with the new form of board.  Moms first treatment did not work so we are on to the new one PD-1.  Her last CT scan shows that things have doubled in size and number.  I cried for two days.   She seems so well but she has been stage lV since Feb.  Has anyone out there done the PD-1 trial? I would love to hear.


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himynameiskevin's picture
Replies 13
Last reply 8/25/2010 - 10:13am

I was just told I have a met to brain as well has my lungs and liver. They swithched the plan of attack to radiation for three days on my brain. Followed by Interleukin 2 in about a week. I'm worried and seeking answers, to feel hopeful. So my question is, has Interleukin 2 ever worked? For anyone? Any success stories you may have heard of?

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amybusby's picture
Replies 28
Last reply 4/23/2011 - 7:10pm

So far so good with the Temodar.  I've been on it for 2 or 3 days and so far no side effects.  I take it right before bed on an empty stomach (zofran as pre-med about half hour before!).

I've already done the simulation and stuff, so I am ready to start WBR on Mon. I'll do a 10 day course and then an MRI.

I've been around for a long time - fighting this for seven years.  I've seen so many of my friends and up in this position.  I'm not blind to the reality of what this means.  But I am also in pretty good spirits, knowing things could always be worse.  And knowing how many prayers, positive thoughts, and love are being sent out on my behalf - hard to feel sorry for yourself about anything when that's the case!

I'm so terribly worried about my friends Jerry and Knute.

Thanks for all the financial aid info on the Temador.  Luckily my insurance will be paying part of it, so it won't be as bad as I thought to get it.  See - lots to be thankful for!

I hate the idea that I may suffer some confusion & cognitive problems.  That's why I've always worried about having to do WBR/  As you all know I'm extremely proud of my razor sharp wit & intellect! *wink*  So here's hoping that's not too bad and my pretty little bald head doesn't get too burned!



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Vermont_Donna's picture
Replies 6
Last reply 8/23/2010 - 12:25pm

Hi everyone,

  I just finished two days ago, 6 weeks of radiation treatments, 27 treatments each to  two different sections of my leg, thigh and lower calf, staggered so that the lower started one week after the upper, due to the wider excision not being healed. My skin on my thigh is red, sunburned looking and feeling and quite painful to touch...but I expected that, after having done 5.5 weeks of radiation to my knee area last year. My lower calf is not as red but the wider excision wound, which is still not healed up, but IS healing (its been since June 1st) remains QUITE painful, open, oozing lymph fluid still, and I change the bandages three times a day. I am doing twice weekly lymphadema treatments, although my leg is not nearly as swollen with lymphadema as it has been in the past after different treatments or leg infections. I am on round two of an antibiotic (had a slight cellulitis a month ago and just as a precaution nowas when I was finished with the antibiotics my leg really started throbbing in pain), and I am on vicodins for constant pain. Overall its not bad though, and I am managing...still working 5 to 7 hours a day......the vicodins take the pain down from a 5 or so to a 3......I do want to describe how EMOTIONAL I have felt this past week.....several reasons......leaving the daily treatments (so the feeling of ACTIVELY treating this beast) and sad about not seeing the staff, especially the doctor and the radiation techs who I knew from last year as well and have formed such a bond with. SO I knew that it was going to be hard as I neared the end of treatments, and it was!!! I have been teary the last two days. On my last day of daily treatment I stayed home in the morning and baked the staff a made from scratch two layer chocolate cake and brought that in with a card, with all their names on it (and those of you who have done radiation know this is quite a team who put together and do your radiation treatments)....there were hugs all around from everyone and I managed to keep it together while in the Cancer Center but did cry afterwards......needed to.....okay, well this is long winded, but just wanted to update how its going and what it was like for me to do radiation treatments. By the way, the surgeon (my oncology surgeon) has said it will take 2 to 3 MORE months for this leg wound to swimming, no baths, no hottubs (wouldnt do that anyways with leg lymphadema and sanitation worries).......Donna, stage 3a, six leg re-occurences, post 11 months interferon, 7 months leukine, isolated limb perfusion, two rounds of radiation, and numerous wider excisionsover the last 4 years

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mrsmarilyn's picture
Replies 9
Last reply 8/22/2010 - 12:13am

Hello everyone - I havent been on here since the new format.  Not sure I like it!!!  Just wanted to check in with everyone and let you know that my brother - on GSK Braf inhibitor - still showing shrinkage - with no progression.  He has been on GSK Braf - ihibitor for about 7 months.   If anyone out there wants further information - please feel free to email me.  This has been a miracle drug so far - his stage IV melanoma was progressing fast.

Best wishes and stay hopeful.


(sister of brother Gary stage IV)

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debbieVA's picture
Replies 14
Last reply 8/21/2010 - 10:09pm


 MPIP Family..... I just received a call from Pam...KURT suffered a cerebral bleed..STROKE Thursday. He had Right sided paralysis and has expressive aphasia, while he is able to speak, he can't find the right words to express himself. CT and MRI have been done which shows the bleed is extending. Pam has gotten a bit of sleep but sounded tired...and worried.


Please keep them in your prayers.


Debbie Stage 4 NED

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Linda J's picture
Replies 3
Last reply 8/21/2010 - 11:43am

Has anyone had success with radiation before surgery?  The tumor on my butt/hip is fairly big (about the size of ping-pong ball) and has caused a lot of redness and swelling on the skin surface, so the idea so far is to do radiation to "sterilize" tissue around the tumor that may be impacted and to maybe shrink the tumor so that the surgery isn't as huge and also so that if there is any micro-involvement in the surrounding tissue, that is doesn't get pushed around and stuff with the reconstructive part of the surgery.  Does that make sense?  Or should I just ask to have the surgery and then radiation?  They will be radiating my groin as well as doing a LND to the groin area, but they were hoping to have both the groin surgery and the tumor removal done at the same time. 

The radiologist also said that the radiation will for sure hit my ovaries - I know this is a whole other issue, but would it be worth it to have eggs harvested before the radiation?? I'm 30. 

I am just totally completely freaked out because of the size of the tumor.  So far all my scans are clean, but when I go to bed at night all I think about is "how did this get so big" and "oh my god, this tumor is way bigger than my other reoccurances" .  I CAN NOT sleep because I am freaking out about how big this melanoma is.  I have never been so scared and so low.  I don't even know what to do this time to keep sane.

Has anyone had radiation first and then surgery and did that work for you? And has anyone else had a big tumor that they were able to beat?

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joy_'s picture
Replies 6
Last reply 8/19/2010 - 9:50pm
Replies by: babybluiz, Anonymous, bill58, washoegal, King, joy_

My husband is 6 weeks into recovery from LND of the groin.  He still can't completely straighten his leg.  He says it feels like his tendon is too short (pulls from behind his knee up to his groin).  Is this normal?  Has anyone else experienced this?  If so about how long until things were back to "normal."

He also says he has a "big section" of the front side of his leg where he feels nothing.  Permanent nerve damage?  Get better over time?

I guess we could wait until his recheck in a couple of weeks to ask the Dr but you all are so kind and helpful that I thought I would go ahead and ask here.

Thanks in advance for any and all responses.


wife to Bill, stage IIIc

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joy_'s picture
Replies 9
Last reply 8/30/2010 - 12:01am

My husband is 6 weeks into recovery from LND of the groin.  He still can't completely straighten his leg.  He says it feels like his tendon is too short (pulls from behind his knee up to his groin).  Is this normal?  Has anyone else experienced this?  If so about how long until things were back to "normal."

He also says he has a "big section" of the front side of his leg where he feels nothing.  Permanent nerve damage?  Get better over time?

I guess we could wait until his recheck in a couple of weeks to ask the Dr but you all are so kind and helpful that I thought I would go ahead and ask here.

Thanks in advance for any and all responses.


wife to Bill, stage IIIc

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Well, I guess the good news is that not ALL melanoma cancer cells are cancer stem cells, as one recent study posited, or express the protein CD 271 ...... Now, if they can find or develop something which can target melanoma cells expressing this protein, how great would would that be ?  ..... I guess we should take heart in that the first step in defeating any foe is usually Sun Tzu's maxim "Know Your Enemy"....even though this particular enemy can look like Arnold in The Terminator at times.....Hawaii Bob, Stage IIA


Melanoma-Initiating Cell IdentifiedScienceDaily (July 1, 2010) — Scientists at the Stanford University School of Medicine have identified a cancer-initiating cell in human melanomas. The finding is significant because the existence of such a cell in the aggressive skin cancer has been a source of debate. It may also explain why current immunotherapies are largely unsuccessful in preventing disease recurrence in human patients. "These cells lack the traditional melanoma cell surface markers targeted by these treatments," said post-doctoral fellow Alexander Boiko, PhD. "Without wiping out the cells at the root of the cancer, the treatment will fail."

Boiko is the first author of the research, which will be published in the July 1 issue of Nature. He works in the laboratory of Irving Weissman, MD, the director of Stanford's Institute for Stem Cell Biology and Regenerative Medicine. Weissman is the medical school's Virginia & D.K. Ludwig Professor for Clinical Investigation in Cancer Research and the senior author of the research. He is also a member of the Stanford Cancer Center.The cancer stem cell theory holds that, like queen bees in a hive, only a subset of cancer cells are at the root of the tumor's growth. These cells can both self-renew (that is, make more of themselves) and differentiate into other tumor cell types.

Any therapy that doesn't wipe out these elite cancer stem, or initiating, cells has no chance of completely eradicating the disease even if it destroys nearly all other tumor cells. That's why, say proponents, it can be relatively easy to get a patient into remission, but extremely difficult to prevent the cancer stem cells from roaring back and causing a relapse months or years later. Cancer stem cells were first identified in blood cancers, but have since been identified in a number of solid tumors including bladder, brain, breast and colon cancers. Previous studies in the laboratory of assistant professor of radiation oncology Maximilian Diehn, MD, PhD, in collaboration with the laboratories of Weissman and Stanford colleague Michael Clarke, MD, have indicated that cancer stem cells may be more resistant than other cancer cells to many common treatments like radiation and some chemotherapies. Clarke is the Karel H. and Avice N. Beekhuis Professor in Cancer Biology at the medical school and both Diehn and Clarke are members of the Stanford Cancer Center.

Although a growing body of evidence seems to support the cancer stem cell hypothesis, melanoma has remained a conundrum. A University of Michigan study in 2008 found that as many as one in four melanoma cells could cause cancers in immune compromised mice, suggesting that there may not be a particularly privileged subset of cancer stem cells in this tumor type. Boiko set out to solve the mystery.  "I didn't know if melanoma would in fact have the cancer-initiating cells," said Boiko. "I was completely unbiased, so I was actually sort of surprised to find such a clear-cut answer. It fits exactly what's been discovered in the studies of other solid tumors."

To conduct the study, Boiko analyzed cell surface markers on primary melanoma tumor samples taken directly from patients at the Stanford Cancer Center. In this way, he avoided having to grow the cells for a long period of time in the lab. Continuous culturing, or passage, of cancer cells often gives the cells time to evolve and change in ways that might not accurately reflect their composition in melanoma patients. He found that one protein, called CD271, was always expressed on only a fraction of the cells in the human melanoma samples tested: The proportion of cells expressing CD271 varied in the samples from 2.5 to 41 percent of the total cell population; the marker appeared on a mean of 16.7 percent of cells in the samples.

This was interesting because CD271 was previously identified as a marker that identifies a group of cells called the neural crest stem cells. These cells are unique in that they are a multipotent, migratory cell population that becomes many cell types during development including melanocytes (cells responsible for skin pigmentation), bone, smooth muscle, neurons, and cartilage in the head and face. When Boiko transplanted the melanoma cells from nine human samples into laboratory mice with severely compromised immune systems, he found that the cells expressing CD271 on their surface were much more likely to cause cancers in the recipients than those from the same tumor that didn't express the marker (70 percent versus 7 percent, respectively). And all but one of the newly induced tumors arising from the transplantation of the CD271-positive cells went on to develop a population of a mixture of CD271-expressing and non-expressing cells -- indicating that the cells with the marker were both self-renewing and differentiating into other types of tumor cells.

Article continues at the link

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Lori C's picture
Replies 9
Last reply 8/21/2010 - 9:12am

In 9 days Will has his scan after two rounds of chemo.  He's feeling well at the moment - the pain meds have really made a difference and today he was doing just great.  He's continuing physical therapy and eating well.  We went out for coffee and he had two donuts so I was happy.

His visible skin lesions have all seemed to reduce, some pretty well, in size.  However, I'm getting almost paralyzed with fear anticipating the scans.  His sister is warning me to get hospice lined up (I do have info on that if he needs it but they can't do anything unless he stops treatment, according to the guidelines we were told).  

I'm trying to be optimistic but realistic.  On July 9, we were told his liver was badly compromised by the melanoma and it was acting aggressively based on comparisons with a scan done four weeks earlier.  It is unreasonable to think that if the cancer in his liver was still as aggressive he'd be at least a bit sicker than he was at that point by now?  Or am I engaging in wishful thinking?  He's less ill, from what I can tell, than he was six weeks ago, not more.  He even went into Chicago to visit someone on Monday using the train.

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