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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Derek had scans 3 weeks after his last ipi injection and scans show progression in his thorax (no measurements) and right lung (no measurements) and progression in his liver (1.7 to 3.3. and 1.2 to 1.5) and a new tumour behind his eye. 


We really want to believe that ipi just hasn't started working yet but our oncologist does not want to wait.  He would like to radiate his lung, thorax area, and eye - 5x, and do chemo - 2x (carbotaxol) for his liver - to attempt to get things under control.


My question is that if ipi stimulates the immune system and chemo kills it will that not wreck anything that ipi might still be trying to do and how do you tell between inflammation and continued growth - I really need some help, please...should I be asking for measurements and going back and calcualting the rate of growth or progression before and after ipi or go with chemo and hope it doesn't undo any possibility that ipi could still be working?


Thank you in advance


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Angela C's picture
Replies 9
Last reply 4/20/2012 - 12:06am


I wanted to post an update for those who may have read my recent posts. I was taken off of the MDX-1106 trial about a month ago as I had more than the 20% tumor growth allowed. A brain MRI at that time also showed a 2-3mm lesion suspicious for a tiny metastasis. I had SRS last Wednesday to treat the spot in the brain. I am scheduled to start Yervoy next week at Loyola with Dr. Clark.

I currently have a tumor in my right adrenal gland. That is the only major thing that we see going on at this time.I have some spots that show up in my lungs, but they have been stable and never biopsied.  So, we are moving on with Yervoy now hoping that it will do the trick and shrink this tumor and kill off any other melanoma cells floating around.

If any of you have started Ipi recently, I'd love to e-mail with you so we can compare notes. =)


Be kind, for everyone is fighting a great battle. -Plato

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Long article that discusses c-kit mutations and resistance to treatments.

I would expect similar modes of findings in all of the targeted attacks on different mutations other than just c-kit.  This shows what the medical research is up against in attempting to narrow the attack on each mutation in each type of cancer (even within the different types of c-kit melanoma!).  

The introduction, results and Discussion sections are especially interesting.
Wish I had a better background to understand the details even better.

The article sections are:

Materials and Methods
c-KIT Expression in FDC-P1 Cells
c-KIT Kinase Inhibitory Drugs
Immunofluorescence Assay
Cell Proliferation Assay
Immunoprecipitation and Western Blot Analysis
Structural Analysis
Expression Levels of c-KIT in FDC-P1 Cells
Preliminary Studies with V654A Mutant c-KIT
Effect of the V654A Substitution in Combination with V560G, an Activating Mutation Characteristic of GIST, on Drug Sensitivity
Effect of Kinase Inhibitors on c-KIT Phosphorylation

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

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deirgey's picture
Replies 2
Last reply 8/31/2011 - 12:16pm
Replies by: MariaH, FormerCaregiver

Hi All,

  My father is Stage IV and started on Yervoy back in April 2011 after it came on the market.  He received colitis after the first infusion and started on steriods right away.  His 2nd treatment was delayed but he started back up and received his last 3rd treatment at the end of June.  He was having pain in his hip in the beginning of July and in August they found out he had a new tumor growth (9cm).  He had a bone scan and MRI of the pelvic region and both were clear of cancer.  It took them a while to find the tumor (not sure why) but they finally gave him a CT scan in his pelvic region to uncover it in the middle of August.  The scan revealed a lot of disease progression since April with many new sites in his lungs and liver.  His doctor claims the treatment is working and that he has had a lot of "success" so far.  He also said that this drug does not have dramatic responses, meaning most of the time the tumors will just be stable and not disappear.  When I read the blogs of the IPI responders, their tumors are disappearing.  As we understand Yervoy, it does take time to work but the scans were very discouraging for my father.  He is getting surgery to remove the tumor in his hip and the doctor wants to follow up with scans in October along with another infusion of Yervoy then. 

Does anybody else have experience with Yervoy/IPI where it took a while (20+ weeks) for the drug to make the tumor growth become stable or disappear?

Really appreciate your input.  Thanks!

Deidre Grief (Father Stage IV)


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Doug-Pepper's picture
Replies 2
Last reply 8/30/2011 - 9:26pm
Replies by: jax2007gxp, alicia

Praise the Lord! Doug had a clear pet scan last week. We are so thankful. He has continued a much healthier diet, supplements, alkaline water, & lots of prayer since his initial dignosis in Oct. 2010. He still sees the plastic surgeon, dermatologist, & oncologist every couple of months for body & lymph node checks. Just wanted to share some good news. Praying for all of you on here. Many have been so helpful.Thanks, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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jmmm's picture
Replies 6
Last reply 8/31/2011 - 2:15am

My husband was dx with stage 4 in January.  2 surgeries, failed at Gleevec (he's c-kit positive), started Yervoy in May.  Completed his 4th cycle on July 5.  A scan showed the 2 tumors were gone, but one area of concern in his stomach.  He had a scan last week and the results yesterday showed a tumor in his belly and one in his neck.  The dr. thinks it's new disease.  Now what??  He is braf positive, so we know he can use Zelboraf, but we know that just buys a few months at best.  What other trials are out there that look promising?  Help--he's only 38 and we have 3 little boys at home who need their Dad!

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rjcravens's picture
Replies 5
Last reply 9/3/2011 - 8:51am

Restarted interferon last night after having a week and couple days off. Took injection at eight, woke up at midnight with uncontrollable chills and shaking. My legs are killing me this morning and i feel like i have been run over......BUT.....i am going to remain possitive like everyone tells me and i am going to work my 6a to 6p shift today in hopes that i can make a difference in the lives of one of my patients:)

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lizard's picture
Replies 9
Last reply 9/1/2011 - 12:24am

Hi. I'm new to all of this and I have a few questions maybe you folks can help with. Been scanning this forum, but not seeing the info I'm looking for.

My wife is recently diagnosed with Stage3A. She had a positive mole removed in early June. The follow up sentinal lymph node (3 nodes sampled) came up positive for microscopic growth. She then had all 31 nodes removed from that armpit - all were negative and the PET was too.

We are looking at starting interferon next week. She will be getting the low dose regime from the start - no high dose IV - or at least that's how I understand it. Meeting with the oncology team this week and I'll get that clarified.

Problem is that my work takes me out of town a bit and I don't want to leave her to deal with side effects and kids etc on her own, especially at the start of the treatment, and I'm supposed to go out for a few days next week. I can't tell if I can safely leave the house to get groceries let alone leave town for 3 days.

Reading these forum postings, it looks like pretty much everybody taking the stuff feels worse than terrible. Can anybody say how soon she will start to feel it? Does it hit you after the first one, or does it take a few to build up? Can I be away at all during this beginning period or do we need to plan on her being incapacitated? Will it hit her immediately or does it kind of creep up? How long should we expect it to last after the first dose - hours or days?


Any advice is welcome, thanks

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alicia's picture
Replies 12
Last reply 9/5/2011 - 5:44pm

Hey friends, this past thur I went to Vandy to have 3 lymph nodes biopsied that had a hypoechoic lesion in each.  My surgical oncologist was concerned about metatatic melanoma recurrence so they did core biopsies on each node.  They took 14 samples total and all came back negative for melanoma cells!!!!!!! The results were necrotic tissue. In a way I feel guilty that I have such great news to share but I just thought It may give some of you hope.  I have had 3 primary tumors with the most advanced stage 3 w/ (+) SNV 2.3mm melanoma, second was 0.59mm stage 1, and third in jan 2011 was over 2.3mm stage 2 (neg SNB).  Thanks so much for those of you who have helped pray for, encourage and educate me through all this.  much love to you all!!!!!


love ya,


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petie540's picture
Replies 3
Last reply 8/29/2011 - 9:51pm
Replies by: petie540, acyr, Lisa13

Discontinued Temodar in June due to slight increase in size of lung mets. Still subcentimeter. Began a clinical trial with ipi 10mg/kg and GSM-250 fourteen days after each infusion. Nothing dramatic until four days after the third infusion when I developed quite a nasty rash-quite uncomfortable. Started on prednisone 40mg/day and after two days feel much better. One more infusion, then cat/mri on 9/30.Keep you all posted!

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rjcravens's picture
Replies 6
Last reply 9/1/2011 - 8:52pm

So, i started Interferon in May, sub q in june. Two weeks ago i started to feel like someone sucked the life out of me. I missed a couple days of work. Weak, nauseated, headache and sooo tired. I ended up passing out in the bathroom, giiving myself a black out. Went to doc. He said take a break, stop tretment for a week and restart at lower dose. He said my liver functions were up, lost ten percent of body weight, blood counts were low. Hbg and wbc. So i went from 12 units to restarting at 6 units. My queation is, is it still even effective?? He said if i had the same effects then we would have to quit. I dont want that. I want to know i did everything to prevent it from coming back. Any thought??

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JerryfromFauq's picture
Replies 2
Last reply 8/28/2011 - 11:17am
Replies by: Phil S, mombase

KIT as a Therapeutic Target in Metastatic Melanoma
JAMA. 2011 Jun 8;305(22):2327-2334, RD Carvajal, CR Antonescu, JD Wolchok, PB Chapman, R-A Roman, J Teitcher, KS Panageas, KJ Busam, B Chmielowski, J Lutzky, AC Pavlick, A Fusco, L Cane, N Takebe, S Vemula, N Bouvier, BC Bastian, GK Schwartz


In this open-label phase II trial, significant clinical response to imatinib was observed in a subset of patients with metastatic melanoma harboring KIT gene alterations.


OncologySTAT Editorial Team

Melanoma is a disease of biologically distinct subtypes and generally poor prognosis once advanced. A key goal is to identify therapeutic targets that may allow improved treatment and survival. One target of interest is the KIT tyrosine kinase receptor gene. Melanomas arising from acral, mucosal, and chronically sun-damaged (CSD) sites often harbor KIT-activating mutations or amplifications. Tyrosine kinase inhibitors have proved beneficial in other cancers that harbor KIT mutations (gastrointestinal stromal tumors), and there have been reports of response to imatinib (a KIT inhibitor) in patients with KIT-mutant melanoma. In this open-label phase II trial of imatinib in patients with KIT-mutant melanoma, Carvajal et al hypothesized that KIT inhibition would result in an objective clinical response and disease control and that specific KIT alterations would correlate with clinical response.

Adult patients with metastatic melanoma arising from acral, mucosal, or CSD sites were enrolled between April 2007 and April 2010 from six cancer centers in the United States and were eligible if they had an Eastern Cooperative Oncology Group (ECOG) performance status of 0 to 2, life expectancy of ≥ 3 months, and measurable disease according to RECIST criteria. Tumor samples from study patients were evaluated for KIT mutations and amplification as well as coexisting BRAF, NRAS, and GNAQ mutations. Patients with tumors harboring KIT alterations were eligible for 6-week cycles of imatinib, which was continued until unacceptable toxicity or disease progression. Imatinib was started at 400 mg twice daily, with the dose reduced to 400 mg daily and then 300 mg daily in the event of toxicity; study treatment was discontinued if toxicity persisted. Tumor assessments consisted of radiographic tumor measurements and occurred within 4 weeks of the first dose of imatinib, then every 6 weeks for 18 weeks, and every 12 weeks thereafter. The primary endpoint was durable partial or complete response according to RECIST criteria. Secondary endpoints were overall survival (OS), time to progression, and association of molecular alterations with clinical response.

Of 295 patients whose tumor samples underwent molecular screening, 51 had tumors harboring KIT alterations; 26 tumors (51%) had only KIT mutations, 9 (18%) had only KIT amplification, and 16 (31%) had both mutations and amplification. Of the patients with KIT-mutant tumors, 28 were treated with imatinib and included 13 patients (46%) with mucosal melanoma, 10 (36%) with acral melanoma, and 5 (18%) with melanoma arising from CSD sites; none of the patients who received imatinib had BRAF, NRAS, or GNAQ mutations. Reasons the remaining 23 patients did not receive imatinib included absence of active disease, death, ineligibility due to other treatment or medical condition, and contraindications to imatinib.

Of the 28 patients who received imatinib, 25 were evaluable for clinical response. Of these, 2 patients achieved durable complete responses (94 [ongoing] and 95 weeks, respectively), and 2 achieved durable partial responses (53 and 89 [ongoing] weeks, respectively); the predetermined endpoint of five responses of 25 evaluable patients was not met. The overall durable response rate was 16% (95% CI, 2%–30%), median time to progression was 12 weeks (interquartile range [IQR], 6–18 weeks; 95% CI, 11–18 weeks), and median OS was 46.3 weeks (IQR, 28 weeks–not achieved; 95% CI, 28 weeks–not achieved). A total of 10 patients (40%) were alive at the time of analysis.

KIT mutations were widely distributed over the coding region, but all responses occurred in tumors with L576P and K642E mutations. Subgroup analysis revealed a higher response rate in cases with a mutant to wild-type KIT allelic ratio > 1 (71% vs 6%; P =.002).

In conclusion, significant clinical response to imatinib was observed in a subset of patients with metastatic melanoma harboring KIT alterations. Further studies are needed to confirm KIT alterations of functional relevance in order to better predict response to KIT inhibition.


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

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Another study relatiing diet and cancer.
Abstract The Mediterranean diet and more specifically certain meats, fruits, vegetables, and olive oil found in certain parts of the Mediterranean region have been associated with a decreased cardiovascular and diabetes risk. More recently, several population based studies have observed with these lifestyle choices have reported an overall reduced risk for several cancers. One study in particular observed an inverse relationship between consumption of Mediterranean herbs such as rosemary, sage, parsley, and oregano with lung cancer. In light of these findings there is a need to explore and identify the anti-cancer properties of these medicinal herbs and to identify the phytochemicals therein. One agent in particular, carnosol, has been evaluated for anti-cancer property in prostate, breast, skin, leukemia, and colon cancer with promising results. These studies have provided evidence that carnosol targets multiple deregulated pathways associated with inflammation and cancer that include nuclear factor kappa B (NFκB), apoptotic related proteins, phosphatidylinositol-3-kinase (PI3 K)/Akt, androgen and estrogen receptors, as well as molecular targets. In addition, carnosol appears to be well tolerated in that it has a selective toxicity towards cancer cells versus non-tumorigenic cells and is well tolerated when administered to animals. This mini-review reports on the pre-clinical studies that have been performed to date with carnosol describing mechanistic, efficacy, and safety/tolerability studies as a cancer chemoprevention and anti-cancer agent. Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

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rjcravens's picture
Replies 4
Last reply 9/1/2011 - 8:36pm

My name is Rachel and I am 35 yrs old. I have been married for 13 yrs to a wonderful man named Jerry. We have three blessings...Megan 13, Dawson 12, and Amy 10. I am starting a blog in attempt to keep my sanity and hopefully find answers to some questions and meet others and hear their stories. Jan 2010 I had a smal "pimple" come up on my left upper arm. It wlas the same color as my skin and of no concern to me. My husband kept saying "that thing has been there a while, i think you should have it looked at." Being a nurse, I put it off and figured it will go away. It did not. First part of Feb I went to family doc. He had me use some cream for a couple weeks then took it off and stated it was prob a granulation, no worries. A couple week later i get the call its Melanoma. So i went to surgery had wide excision they traced the lymph node and removed it. PET scan and MRI negative. It came back with no spreading to the lymph nodes but was 4cm.
It was discussed to do nothing or start Interferon. I started the treatment in May IV, then started sub Q in June. It has not been nice to me. As of Monday, I will be reducing the dose in almost half. Here are some of my questions: 1. Did anyone think the Interferon gets easier after a certain point? 2. I am taking cymbalta in the mornings, as well as Ritalin. I take ativan and zofran on days of injections. Is there anything else i should take? And does anyone else have experience with Ritalin for fatigue? 3. When is this feeling of living in fear each day going to pass? I am eager to hear

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Donna M.'s picture
Replies 1
Last reply 8/29/2011 - 9:45pm
Replies by: BethA

So after a solid week of dressing changes because my picc got wet, I found the DryPro Waterproof PICC Protector by DryCorp.  It's a rubber sleeve that you slip over your arm, and it has a pump that creates a vacuum seal around your PICC.  You can also use it for swimming.  I just tried mine, and it works!  Check it out at

Hope everyone is having a good day!

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