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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glewis923's picture
Replies 7
Last reply 12/3/2010 - 8:31pm

Hey ALL-  Got 6wk. CT scan and all my lung nodules (nice word for TUMORS!!!) have NOT increased in size. ie: they are relatively stable compared to last scan where they had tripled in size.  I hesitate to "crow" too loud about any shreads of semi-good news, but I'm so grateful that, at least temporarily, my lung tumor growth has "stabilized" and there has been no further spread to other organs as of yet.  FYI:  I'm on Taxol/Carboplatin/Avistan.   I think of ALL of you quite often although I don't always "share" that much......I pray for ALL- especially those younger than I (48).   Just thought I'd finally post something semi-positive about myself; instead of lousy advice or tiring questions.

 

Love to ALL-  Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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Hi everyone,

I feel great so far. Had my first IPI infusion yesterday. I saw my oncology surgeon before seeing my melanoma oncologist because of the two open wounds and a possible infection.I pointed out my 5 new melanomas nodules. He agreed that they were melanoma, as they look like how mine usually present. He brought up the drastic option of an above the knee leg amputation. There is no known melanoma anywhere else in my body. We could get rid of the melanoma and the unhealed wounds in my leg by amputating. I told him, as I bawled, that I wasnt afraid of having my leg amputated and having to have a prosthesis. I am afraid of doing that AND melanoma rears its ugly head again, further up on my thigh, or elsewhere in my body (an organ, etc). OR I worry about my "stump" not healing, just like the two wider excisions have not healed. He said he heard what I was saying and agreed there were no guarantees on either concern. He just wanted to bring it up as an option that I SHOULD think about and consider. Oh and I had another celluilitis infection, which I had suspected and was the reason for my visit. I cried so much during the visit but finally pulled myself together as I had my oncology visit and then my IPI treatment. I managed to get, with my mom's support from 4L to 3K ,but felt like I couldnt get enough air. I knew I was on the verge of a panic attack. I made it to the oncology office and I knew my surgeon was calling my oncologist. As soon as he saw me as he was walking by he said "I'll get you into a room as soon as possble".The nurse came out right away and took me and my mom to a room. He came in right away and was GREAT! I said I was afraid I couldnt do the IPI because of the leg infection...he said dont worry, this is what we are going to do....we are going to call your leg issues a chronic indolent infectious process and put you on augmentin twice a day for two weeks then once a day for months. Then we can get you into the trial. I told him I needed som ativan as I was getting panicky and couldnt breathe well. He knew I was upset and he said as soon as we get you into the clinic rooms for IPI I will get you some ativan. That helped me calm down. He then spent the next 45 mintues talking to me and my mom about where leg amputation fit in as far as my clinical case of melanoma. He said he wanted to give IPI a chance and then try IL-2 and/or other chemos before we made that decision. He has had some patients who opted for amputation of their leg. He understood how bad I felt and how scared I am. He did his physical exam, agreed with all the nodules I found being melanoma and he found a spot behind my leg that I hadnt seen. We then went to the clinic rooms and the first thing they did was give me IV Ativan, then an augmentin pill to get started and then eventually the IPI arrived and that part went really well. The staff was great, everyone was perfect and so caring. I slept and dozed and mom said I asked the same questions twice a couple of times. Haha, that darn ativan. I got a prescription for lorazepam as I know there are just some days I need it. I know some people here have opted for leg amputation....can you write to me and please tell me more about your specific situations??

Thanks so much for reading all of this (if you indeed made it this far!)

Vermont_Donna

stage 3a

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Jaime.30's picture
Replies 15
Last reply 12/8/2010 - 5:33am

I am newer to the board but have shared our story with a few of you so I thought I would post a little update. I am the caregiver to my husband  and in September he had a Craniotomy to remove 3 small clustered lesions which turned out NOT to be Melanoma but inflammation and he recently had MRi's done of his brain and spine again and still nothing there so they have determined that it was more than likely caused by the radiation that he had after the primary was first excised.  It was on his ear and the inflammation was on the same side just above the ear in the brain.  So he was declared NED and still at stage III and not stage IV yet.  At his next appointment his doctor felt something in his neck dissection scar that he feels is suspicious so off for a CT scan....still waiting on those results but  he has had needle biopsies done in this area before and all has come out just fine.  We decided when the doctor was concerned that after so many false alarms and so many late nights talking about the what ifs of it all that this time would be different..we were not going to worry or discuss what could happen if it turns out to be melanoma this time around.  I always worry...my nature is a nurturer and a worrier but my husband is a very calm and one day at a time kind of guy and last night he says to me..." So what are we going to do if this is a tumor?"  In all honesty I wanted to scream and throw a fit...and say I can not handle going there right  now...that I have a horrible feeling that this stupid cancer is going to take you away from me and away from our dreams that we are still planning ...but I didn't I was a good wife and I told him we will handle it together and we would find the best damn plan we could find to get rid of it.  It is so hard to not know.  He is finally feeling better and getting ready to go back to work.  He was very weak on the left after the surgery but is doing much better and the lingering Interferon side effects have finally made their exit for the most part...If Melanoma does come back...ok...off to battle we will go...but I just want him to have some time to feel good...to be able to do the things he wants without being sick from treatments.  I wish so badly I could just take this from him...I feel so totally helpless a lot of the time.  I guess I ended up venting a little more than updating....sorry. :o)  I guess the only question is does it ever get better...does the thought of a reccurrance ever stop sending families into complete and utter melt down emotionally??  I have met several women who have lost their husbands to this beast and they have done so with Grace and strength and I just hope and pray I can keep being strong for my husband the way they have.  I do really well on the outside but inside sometimes...not so much!

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redbaron0511's picture
Replies 3
Last reply 12/2/2010 - 12:55am

I have recently been diagnosed with metastatic melanoma,  May of 2010, and was wondering if anybody has any information on the use of LDN ( low dose naltrexone)? I've been doing some research on this interesting drug, which was FDA approved in the 80's for use in treating drug and alcohol addiction, at the 50mg dosage. There are a few dr's that are working with the dosage of 1mg-4.5mg, and are having pretty good results. I went to my oncologist with some info on LDN, but he acted like I never even brought the subject up. I can understand his reluctance as LDN is considered to be an off brand treatment.

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jolainajo's picture
Replies 2
Last reply 12/1/2010 - 12:39pm

Hi everyone,,,, I started my Ipi on Oct 29th, had my 2nd infusion  Nov 19th, I am feeling extremely tired, and it seems that one of my tumors on my leg, posterior, is getting huge, hurting, and it feels like a sunburn, not to mention, I had brain mets before I started Ipi and had gamma knife done, but I see this circle rainbow and it flashes and it comes and goes when I get hot, or exert myself too much. I have gained weight, and feel miserable. I need to know if all of this is normal. I am scared that the melanoma is just getting worse, especially since I feel this tumor constantly. I have other tumors that are subq too, but they dont seem to be feeling or getting large like the one on my leg. I need to know if any of you have had similar reactions, and possibly, need to know when you noticed reduction in size of the tumors if it is working, how far along in the treatment you noticed reduction. PLEASE respond, I need some answers. Thanks............... Jolaina

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swissie's picture
Replies 3
Last reply 12/3/2010 - 3:43am

I haven't really posted on this new forum, but now I need some help.

I was diagnosed with melanoma in September 2008 (1.4 mm), with a "negative" SNB. I found a macrometatastase in June 2009. Of the 12 nodes, 3 had cancer, one of which was outside of the node.

In September 2009 I started a double blind trial with ipilimumab (10 mg/kg), after my 4th infusion I had a colitis and knew I am in the ipi arm of the trial.
I had my 8th round of ipi two weeks ago!

Since I started I had headaches, itching, a funny Beau's line on my toe nales, a colitis (after 4th infusion; min grade 3), a rash  (a week BEFORE my 8th! infusion; min grade 3).
My doctor does not believe the rash was ipi related, but for me it looks exactly the same as some examples I saw in recent articles on CTLA-4 side effects.
Also I have a Barret Espohagus, which again is a coincidence according to my doctor (although I never experienced heartburn of reflux before my trial, and although anti-reflux medication doesn't seem to work).

At the moment, my biggest problem is exhaustion.

My first question is if there are others like me out there who had 8 rounds of ipi or more? How are you feeling? Any new side effects?

My second question is if I should quit the trial. It seems to be taking it's toll. Being exhausted all the time sucks big time. I was very tired from the beginning, but it's getting worse every round.
The extreme rash was only a week before my 8th infusion, so I seem to have late responses.

Any smart ideas?

Thanks,
Sabine
 

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James from Sydney's picture
Replies 9
Last reply 2/7/2014 - 12:29pm

For those of you with non Visceral Melanoma,  Provectus has started Compassionate Use of PV 10 here in Australia, it will be also available in the US soon. The previous Trials had success on a limited use basis which meant you could only have a number of injections on a certain amount of tumors only. This Compassionate use will be a lot more flexible. All the data from this will help set up the Protocol for Phase 3 Trals. I found this email for enquiries,  culpepper@pvct.com

best wishes

James

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/2/2010 - 1:45am
Replies by: LynnLuc, Anonymous, Rocklove, King

Anyone on the NCI Moffitt  Florida mdx-1106 trials??? Would appreciate any feedback. thanks chris

 

"Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy.

http://www.clinicaltrials.gov/ct2/show/NCT01176461?term=mdx-1106
http://www.clinicaltrials.gov/ct2/show/NCT01176474?term=mdx-1106

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claudia-uk's picture
Replies 1
Last reply 11/30/2010 - 8:58pm
Replies by: Linda/Kentucky

 

My husband got his test results back today. He has mucosal melanoma (sinus) with metastases in lungs and liver. He is negative for braf and c-kit. The doctor now suggests ABI-007 trial: Abraxane versus Dacarbazine. I can't really find any information besides the trial information. Is anyone on that trial? It doesn't sound very promising. I don't understand why I never read in forums about it. Please if, anyone is on that trial or knows more about it,. let me know!

http://clinicaltrials.gov/ct2/show/NCT00864253

 

Thanks

Claudia

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Sherron's picture
Replies 41
Last reply 12/4/2010 - 9:57am

He was the most wonderful loving man, Christian, father, husband, best friend, and soul mate a wife could ever want or wish for.  December 4th would have our been our 43rd anniversary. We went to Hospice yesterday afternoon...and by 1:10 am.  the angels took him to heaven, no more pain for him.  Something (God) woke me up 10 minutes before he passed.  What a blessing.  I will miss him so much, my heart is broken...but he is pain free, and Melanoma has him no more!! 

Take Care,

Sherron, wife to Jim FOREVER!

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davekarrie's picture
Replies 13
Last reply 12/2/2010 - 2:21am

I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful. have read many things about inferon and the like.  Also, should they put me through  a PET scan and check LDH levels as I haven't had those yet. thanks for any input/advice.

Live life to the fullest and enjoy each day!

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davekarrie's picture
Replies 5
Last reply 12/14/2010 - 12:17am

I posted yesterday that they thought my lymph nodes were negative, but found out yesterday that they found melanoma cells in 1 lymph node on my right side, now they must go in and remove many more. Now I have to go back to mayo for more surgery, then what?  Just a rollercoaster ride that is tough, not to mention that we found out we are expecting and we are trying to buy/sell a house, what a crazy month it has been. I am young and healthy though so I know I will beat this.  Wanted to get advice for others with stage IIIa to see what treatments are available and/or useful. have read many things about inferon and the like.  Also, should they put me through  a PET scan and check LDH levels as I haven't had those yet. thanks for any input/advice.

Live life to the fullest and enjoy each day!

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I saw this article posted onthe  Dana Farber site today (DFCI.org)

11/29/10:

Researchers shine light on how some melanoma tumors evade drug treatment

Findings pinpoint a critical gene involved in melanoma growth and provide a framework for discovering ways to tackle cancer drug resistance

The past year has brought to light both the promise and the frustration of developing new drugs to treat melanoma, the most deadly form of skin cancer. Early clinical tests of a candidate drug aimed at a crucial cancer-causing gene revealed impressive results in patients whose cancers resisted all currently available treatments.

Unfortunately, those effects proved short-lived, as the tumors invariably returned a few months later, able to withstand the same drug to which they first succumbed. Adding to the disappointment, the reasons behind these relapses were unclear.

Now, a research team led by scientists at Dana-Farber Cancer Institute and the Broad Institute of Harvard and MIT has unearthed one of the key players behind such drug resistance.

Published in the November 25 issue of the journal Nature, the researchers pinpoint a novel cancer gene called COT (also known as MAP3K8), and uncover the signals it uses to drive melanoma. The research underscores the gene as a new potential drug target, and also lays the foundation for a generalized approach to identify the molecular underpinnings of drug resistance in many forms of cancer.

"In melanoma as well as several other cancers, there is a critical need to understand resistance mechanisms, which will enable us to be smarter up front in designing drugs that can yield more lasting clinical responses," said senior author Levi Garraway, MD, PhD, a medical oncologist and assistant professor at Dana-Farber and Harvard Medical School, and a senior associate member of the Broad Institute.

"Our work provides an unbiased method for approaching this problem not only for melanoma, but for any tumor type."

More than half of all melanoma tumors carry changes (called "mutations") in a critical gene called B-RAF. These changes not only alter the cells' genetic makeup, but also render them dependent on certain growth signals.

Recent tests of drugs that selectively exploit this dependency, known as RAF inhibitors, revealed that tumors are indeed susceptible to these inhibitors — at least initially. However, most tumors quickly evolve ways to resist the drug's effects.

To explore the basis of this drug resistance, Garraway and his colleagues applied a systematic approach involving hundreds of different proteins called kinases. They chose this class of proteins because of its critical roles in both normal and cancerous cell growth.

Garraway's team screened most of the known kinases in humans — roughly 600 in total — to pinpoint ones that enable drug-sensitive cells to become drug-resistant.

The approach was made possible by a resource created by scientists at the Broad Institute and the Center for Cancer Systems Biology at Dana-Farber, including Jesse Boehm, William Hahn, David Hill and Marc Vidal. The resource enables hundreds of proteins to be individually synthesized (or "expressed") in cells and studied in parallel.

From this work, the researchers identified several intriguing proteins, but one in particular stood out: a protein called COT (also known as MAP3K8). Remarkably, the function of this protein had not been previously implicated in human cancers.

Despite the novelty of the result, it was not entirely surprising, since COT is known to trigger the same types of signals within cells as B-RAF. (These signals act together in a cascade known as the MAP kinase pathway.)

While their initial findings were noteworthy, Garraway and his co-workers sought additional proof of the role of COT in melanoma drug resistance. They analyzed human cancer cells, searching for ones that exhibit B-RAF mutations as well as elevated COT levels.

The scientists successfully identified such "double positive" cells and further showed that the cells are indeed resistant to the effects of the RAF inhibitor.

"These were enticing results, but the gold standard for showing that something is truly relevant is to examine samples from melanoma patients," said Garraway.

Such samples can be hard to come by. They must be collected fresh from patients both before and after drug treatment. Moreover, these pre- and post- treatment samples should be isolated not just from the same patient but also from the same tumor.

Garraway and his colleagues were fortunate to obtain three such samples for analysis, thanks to their clinical collaborators led by Keith Flaherty and Jennifer Wargo at Massachusetts General Hospital.

In two out of three cases, COT gene levels became elevated following RAF inhibitor treatment or the development of drug resistance. In other cases, high levels of COT protein were evident in tissue from patients whose tumors returned or relapsed following drug treatment.

"Although we need to extend these results to larger numbers of samples, this is tantalizing clinical evidence that COT plays a role in at least some relapsing melanomas," added Garraway.

One of the critical applications of this work is to identify drugs that can be used to overcome RAF inhibitor resistance.

The findings of the Nature paper suggest that a combination of therapies directed against the MAP kinase pathway — the pathway in which both B-RAF and COT are known to act — could prove effective.

"We have no doubt that other resistance mechanisms are also going to be important in B-RAF mutant melanoma," said Garraway, "but by taking a systematic approach, we should be able to find them."

Media Contact

Robbin Ray
(617) 632-4090 

Luke 1:37

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Terra's picture
Replies 2
Last reply 11/30/2010 - 10:15am
Replies by: Linda/Kentucky, Fen

Hi,

I am hoping someone will have some advice about a 2nd surgery in Derek`s lungs and a possible spot on his bone. 

His PET/CT in the summer showed lots of uptake in a right hilar node that had lite up 2.5 years ago - so it is finally confirmed mel.  We have been on DTIC - 3 injections (randomized in the IL-21 vs DTIC trial in TO) - scan results sometime this week will tell us if DTIC has done anything - but a 3rd opinion from a surgeon says it is resectable with 5% possibility of complications because nodes might be attached to vessels and then a lung would have to be removed - however Derek has none of the predictors so we are thinking of having the surgery in January - thinking that is the best option - any advice...

Also, we are concerned about an unknown spot on his rib if it one day turns out to be melanoma (it lite up on the pet and ct but not on the bone scan or ultrasound), they do not know what it is but onc says it will probably in the long run be melanoma...anyone know what options we will have for the bone ie treatment, surgery...

I`m sorry for asking questions and yet not responding very much to others posts - I seem to have little energy between work, kids, and trips to TO, and Derek and I are having a difficult time together as well - I am sure this is not new to anyone here.  Thank-you for understanding.

Terra

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nicoli's picture
Replies 5
Last reply 12/7/2010 - 12:18am

I'm stage 3 and the onc is thinking of using radiation to kill mel cells that are left after  wide excision surgery of several months ago. We know there are remaining cells because 2 mets have recently been found in that same area, one rising up right under the graft skin! I have read that radiation isn't very effective against melanoma but can't seem to find facts or figures. Anyone here able to provide accurate information?

Nicki, stage 3b, dx 12/29/2009

Be strong and take heart, all you who HOPE in the Lord. Ps. 31:24

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