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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Phil S's picture
Replies 4
Last reply 12/18/2010 - 12:50pm
Replies by: JakeinNY, jag, Becky

I just wanted to post and tell everyone that my husband had his head MRI and PET/CAT scans yesterday and the results were very positive, as no cancer is appearing on any of these tests.  Just a quick background, my husband was diagnosed with anal melanoma in January 2010, and has completed eight months of interferon.  Since this form of melanoma is rare and often times aggressive, we have been so worried about these scans.  He has recently had a cold and cough that wouldn't resolve and the doctors told us yesterday that he has pneumonia, and I was so happy that it wasn't the cancer.  He is now doing well (on antibiotics) and ready for four more months of interferon.  He has already lost 35 pounds, and our doctors told us that the average weight loss for a man on interferon is 25 lbs, so we need to fatten him up to tackled the next four months. 

Anyway, I am mainly posting to tell everyone that we are always thinking and praying for all of you, our melanoma family. Also, I want to encourage all those who are undergoing interferon to know that so far we are holding those melanoma cells back, something that we didn't think we could do one year ago, when they gave us our grim prognosis.  So Keep Fighting!!  Wishing everyone a Happy Holiday season.  We are so excited to be able to spend this special time of the year with our young children with renewed spirit.    Valerie (Phil's Wife)

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Linda J's picture
Replies 3
Last reply 12/16/2010 - 8:50pm
Replies by: nicoli, Carmon in NM, jag

I'm just wondering if people here have done any natural or homeopathic treatments along with, or instead of conventional therapies.
I'm trying to decide if I should do any vit C infusions. I think I might also get a juicer and try any alkaline diet...any thoughts?
Does anyone have success stories connected to natural or homeopathic treatments?
Thanks

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Sherron's picture
Replies 2
Last reply 12/17/2010 - 12:13am
Replies by: JenC

How are you and your husband doing.  I have not seen a post from you recently...Just thinking about you both.

Take Care,

Sherron,wife to Jim FOREVER

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Sherron's picture
Replies 0

How are you and your husband doing?  I have not seen you post recently.  I am thinking about you!

Take Care,

Sherron, wife to Jim FOREVER

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jim Breitfeller's picture
Replies 4
Last reply 12/17/2010 - 8:43pm
Replies by: jim Breitfeller, Anonymous, jag

Killing Drug-Resistant Melanoma Requires Combination Therapy

If you are BRAF +, The combination Therapy of BRAF + MEK  may be the best treatment available at the present time.  See the Article below.

I met up Dr. Flaherty in Boston this past week. He is one of the experts on BRAF inhibitors.

Here is his comments on the the news below

Jim,

Nice meeting you as well.

 Dr. Herlyn’s data is not alone. Many groups have seen and published combination strategies that might take us to the next level beyond BRAF inhibition alone. The challenge is not generating the lab data, but getting in a position where the drugs can be accessed and combined. This has been my focus for the past several years and we are making progress. But not quickly enough.

 

Keith

=================================================================================

Killing Drug-Resistant Melanoma Requires Combination Therapy

The researchers see this as further evidence that some cancers must be treated with multiple targeted drugs at the outset of treatment. Their findings are published in the December 14 issue of the journal Cancer Cell.

"The evidence suggests that targeting mutant BRAF can kill cancer cells, but it is not enough by itself to finish off melanoma," said Meenhard Herlyn, D.V.M., D.Sc., director of The Wistar Institute Melanoma Research Center and leader of Wistar's Molecular and Cellular Oncogenesis program. "The good news is that drugs are being developed to work in combination with BRAF inhibitors, which our data clearly shows is our best option if we intend to beat advanced melanoma."

Melanoma is the deadliest, most aggressive form of skin cancer. While surgical treatment of early melanoma leads to 90 percent cure rates, advanced melanoma is notoriously resistant to chemotherapy and has a tendency to metastasize, or spread, throughout the body. According to the World Health Organization, cases of the disease continue to rise, which has helped spur research into therapies such as BRAF inhibitors.

To study how melanoma responds to BRAF inhibitors, the Herlyn lab took melanoma cells with the BRAF mutation and tested them against a variety of anti-mutant BRAF drugs. When exposed to the drugs, the cells died off dramatically only to grow back again. In fact, cells that became resistant to one type of BRAF drug became resistant to all of them, which suggests that the cells were biochemically "rewired" in such a way that they no longer needed BRAF to form tumors.

"Cells are complex machines that work, essentially, through chains of biochemical reactions that we refer to as signaling pathways," said Jessie Villanueva, Ph.D., senior author on the study and staff scientist in the Herlyn laboratory.

"Knocking out mutant BRAF shuts a major pathway down, but if some cells can use an alternate pathway, then they can survive."

To find out which alternate pathways the drug-resistant cells use, Villanueva and her colleagues looked for signs of increased activation among proteins along the pathways BRAF uses, as well as other pathways.

Their hunt turned up two paths that worked together to aid survival. First, they found that resistant cells used a protein similar to BRAF to carry the signal down the chain. Second, they found these cells received an additional boost from the IGF-1 receptor, a protein that sits on the surface of cells and sends signals that prevent cells from being killed. The resistant cells re-route the signal around BRAF by switching to an alternate protein (CRAF or ARAF), which promotes tumor cell growth, while IGF-1R signaling promotes survival of the resistant cells.

Fortunately, there are a number compounds in clinical development that could block signals along both these pathways. So-called MEK inhibitors target a protein along the same pathway as BRAF, and IGF-1 receptor inhibitors (and inhibitors of P13K, a protein that can be activated by the IGF-1 receptor pathway) block the cancer-enabling survival signal. To test these drug combinations in the BRAF-inhibitor resistant cells, the Herlyn laboratory used a tool they developed to simulate the real-world environment of human cells: 3-D melanoma tumor spheroids. Their 3-D tissue cultures allow melanoma cells to grow in all directions, much like a new melanoma tumor would grow after metastasis. As predicted, a combination of these two inhibitors killed BRAF-resistant melanoma cells in the Wistar 3-D model.

Moreover, the Herlyn laboratory confirmed in tissue samples from patients in the PLX4032 trial -- taken both before treatment and after they developed resistance -- that an increased expression of the IGF-1 receptor is associated with resistance to BRAF inhibitors. None of the laboratory-generated cell lines or the post-relapse patient's tumor samples analyzed had new mutations in the BRAF, NRAS, or c-Kit genes.

Additionally, the researchers noted an association between the loss of a tumor suppressor called PTEN, and resistance to BRAF inhibitors in melanoma cell lines. The scientists found that the relapsed tumor of one patient included in the study lost the PTEN gene, even though it was present before treatment. These findings suggest that loss of PTEN could be an additional way that melanoma cells gain resistance to BRAF inhibitors. The Wistar group continues to investigate these and other mechanisms of resistance, as they expect that several will likely arise given the heterogeneous nature of melanoma.

"Tumors are efficient engines of evolution -- they are going to find a way around most treatments, so we want to kill all the malignant cells from the very beginning," said Villanueva. "By targeting both pathways simultaneously you hit these cells with two punches from which they cannot recover."

"If you do this at the outset of treatment, we reason, it will prevent melanoma survival and hopefully improve patient outcomes," Villanueva added.

Support for this study was provided by grants from the National Cancer Institute and the Dr. Miriam and Sheldon G. Adelson Medical Research Foundation.

Wistar co-authors in this study include Adina Vultur, Ph.D.; John T. Lee, Ph.D.; Rajasekharan Somasundaram, Ph.D.; Mizuho Fukunaga-Kalabis, M.D., Ph.D.; Angela K. Cipolla; James E. Hayden; and Ademi E. Santiago-Walker, Ph.D. University of Pennsylvania School of Medicine co-authors include Katherine L. Nathanson, M.D.; Xiaowei Xu, M.D., Ph.D.; Phyllis A. Gimotty, Ph.D.; Bradley Wubbenhorst; Richard Letrero; Kurt D'Andrea; and Anitha Pushparajan. Other authors included Grant A. McArthur, M.B., B.S., Ph.D.; and Damien Kee, MBBS, FRACP, of the Peter MacCallum Cancer Centre in Victoria, Australia; Jeffrey A. Sosman, M.D., and Kimberly Dahlman Brown of the Vanderbilt University Medical Center; and Sylvie Laquerre, Ph.D., of GlaxoSmithKline's division of Oncology Biology in Collegeville, Pa.

Disclaimer: This article is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of ScienceDaily or its staff.

Source:http://www.sciencemagnews.com/killing-drug-resistant-melanoma-requires-c...

Take care

 

Jimmy B

Melanoma Missionary

http://melanomamissionary.blogspot.com/

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Anonymous's picture
Anonymous
Replies 15
Last reply 12/17/2010 - 11:51pm

Hi all,

 

I do not want to put negative thoughts about IPI but I have been reading posts daily. Many people taking IPI seems to have new lesions after taking IPI. Yes maybe these lesions would have shown up anyways with IPI.And yes may these are being caused by "reactions/inflammation" to IPI. I know that this can not be proven "scientifically" but I anyone have any thoughts about IPI and "cause & effect"ofmgetting new lesions after taking IPI. 

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dian in spokane's picture
Replies 12
Last reply 12/19/2010 - 10:56pm

hey.. I would normally think of this as an OFF TOPIC topic, but..the chat room is on topic for some and off for others.

It doesn't get much use anymore, but that's just because of the changes that have gone on with the boards.

But, I see there are hundreds of visitors right now and '10 members' . If I am right, only members can log into the chat room these days, but still, those who are logged in as members can pop in at any time.

Usually, people don't use the chat room here because the see no one listed. There's a spot on the left side of the board that says something like "who's chatting?" that shows a list of people in the chat room, and if no one is in there, then no one comes in. why bother? BUT.. after many years here (I've been coming since 2003) I know that if one goes into the chat room and hangs out there, then new people see your name and come on in (well.. if they are LOGGED IN!)

It is a little used resource with the new boards. But that's a shame, because over the years, the chat room has been a WONDERFUL resource for many people. I've spent many hours there, hours when I was stressed out worrying about scan results, or during treatment. I've chatted with people who were on their computers in their hospital rooms! And I have talked to others from my hospital bed.

It can be very rewarding, being there to talk to someone who is new and scared, and it can be very comforting to chat with others who know how you feel on those nights when you are just ...obsessing and worrying.

I'd like to see people using it more, so that's why I am bringing it up on the main board.

Over the years, there have been different people who just..stuck with it, and hung out in that room, even if they were all alone, for hours at a time. When I first came it was Lynn from Oz..and Charlie and Barth. But many people have done it over the years. Sometimes, there are many of us in there horsing around, and sometimes it's just jokes and celebrity gossip, and sometimes it's someone who is having to figure out how to say goodbye to their kids. But..there's always been someone who did it for weeks at a time. JerryFromFauq was our last guy to hang out there for hours at a time, before his horrible horse accident. And a year, it was Mykka, and before that Barth. Lots of times, these guys just forgot to log off! and you'd go in to talk and they wouldn't even be 'present', but their ghosts would bring people in, and others would come.

I used to do it. Just hang out there for hours while I watched tv or did other things in the evening, but now I travel too much. So hey..you regulars..come chat. Just, log in, go to the chat room, then, if you are alone, minimize that window and open another to read the board. Stay logged on while you read the boards. If no one comes in by the time you finish, then just..check on out. It helps for newcomers to see someone's name in that chat window.

My public service topic of the day.

 

dian

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ValinMtl's picture
Replies 21
Last reply 3/19/2011 - 1:16pm

I have completed my 4th round of the compassionate ipi trial.  Received my scan but have as yet to meet with my doctors although spoke over the telephone to one who was concerned and would be speaking the director of the trial.

RESULT

Abdomen:

Key finding of this study is the signifcant progression of a previously seen left inguinal region 1 cm lymph node in short axis diameter which is currently seen measuring 2.6 cm in short axis diameter.

Impression:

Follow-up patient with metastic melanoma showing disease progression according to recist criteria with more than 20% increase in size of a left inguinal region lymph node.

Decrease in size of more than 30% of a right external ilac lymph node. Two other non-measurable lymph nodes show also decrease in size.

No newly developed lesions.

I'm was very happy about the 30% decrease on my problem leg but extremely concerned and surprised about the 20% increase on left.  I can actually feel the swelling. I have heard (and praying this is so) that sometimes lymph nodes react to ipi and was wondering if anybody else has had such a reaction.  Would appreciate any comments or thoughts on this.  I'm hoping they don't take me off the treatment since I have had this increase (unless, of course, it is absolutely necessary).  I'll be due for another scan in 12 weeks.

Stressed and worried in Montreal,

Val

Live Laugh Love Nothing is worth more than this day!

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Linda J's picture
Replies 6
Last reply 7/19/2011 - 2:45pm

Currently I am recovering from a ingronial LND and the removal of a large tumor on my hip/buttock. When I had my drains and my staples removed the surgeon took out another small lump in my pubic area. Since the i have had six "pimples" come up near my drain wounds. The surgeon called today to say that the other little lump was MM and she is worried that these other pimples are local reoccurances. I see her and a medical oncologist on Friday.

I need help.
Are there people out there who have survived multiple reoccurances that pop up after surgery? They are all just surface ones - like right at or just under the skin.
What are my options for treatment???
I'm in Canada with princess margaret cancer hospital but should I look for treatment in the states?

Can I make it through this again?

Please please help!

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LynnLuc's picture
Replies 7
Last reply 12/16/2010 - 10:26am

my scans are clear and I am still NED...my thyroid is still reacting and now it is no longer “not functioning” but has bounced up to the high side LOL...also seen as good! They took pics of my thighs today and Doc laughed and said I would be famous lol...I said I am blessed...I begin the 2nd Twelve week cycle on Dec 22.

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Tracy Chicago's picture
Replies 4
Last reply 12/15/2010 - 7:38pm
Replies by: Anonymous, Jim in Denver

I have taken a break from visting the board for a while and just wondering what the latest is on BRAF and Ipi? I remember BRAF was showing measurable tumor shrinkage but it only lasts for about 6-9 months and then there is agressive tumor regrowth. Has anyone had a durable response?

 

And I heard Ipi might get FDA approval but only for stage 4 patients. Is that still true? Has anyone had a durable response from Ipi?

 

Thanks and best wishes to everyone!

Tracy, 3B, NED

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molly's picture
Replies 9
Last reply 12/21/2010 - 1:54pm

Thinking of both of you and hoping Eric is comfortable and you have been able to work through  some of the challenges you have been facing.

molly

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davekarrie's picture
Replies 9
Last reply 12/15/2010 - 10:12pm

Good morning all,

Just a quick update on myself.  Initial tumor 1.5mm, mitotic rate 4, non brisk TIL on center of sternum/chest.  Had the WLE, about a 7 inch scar, and SLNB under both armpits.  1 was positive under left arm, then complete Lymph node disection of 41 nodes.  The drain comes out tomorrow and had stitches out of WLE 2 days ago and healing very well.  PET scans negative so for now NED. Met with oncologist at Mayo clinic and she said there is really no approved treatments for IIIa, but she did recomend Leukine if my insurance would cover it.  I have blue cross/shield.  I will be calling them today, but my question is for all out there who have tried Leukine.  What are side effects, how long is treatment, can it be done from home and any other things that you can tell me.

Thank you so much for any info and god bless and happy holidays.

Dave

Live life to the fullest and enjoy each day!

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mifis's picture
Replies 4
Last reply 12/15/2010 - 7:36pm

Hi there,

Some of you may remember me. I was diagnsoed with a melanoma in situon my upper arm in May, had a further excision in June and it came back with atypia at the edges, went for another excision in July which came back still atypical at the edges and was told to "stop worrying about it and get on with my life". Yes, that's a direct quote from the dermatologist! I had a gut feeling not to trust that advice, so went for a 2nd opinion at MSKCC in NYC and had the slides re-read,.Their opinion was that there was still melanoma in situ present so I had a further excision on October 20, much wider, by a different surgeon, and had the slides read twice, inlcuding by the same pathologist at MSKCC. This time it came back with CLEAR MARGINS. Hip hip hooray!

The scar is healing well, about 3" long and quite indented because of the size of the piece of skin that was removed. I went to see the surgeon last Friday for a check-up and he had a quick look at it and we had another long discussion about sunscreen etc. Today, I was checking it out in a mirror (it's hard for me to see because of where it is) and it looks like there's a couple of little dark spots in it. I had my husbnad check it out and he said it looks like  little dark pores, like blackheads, or  little scabs (but there's no roughness), so of course, I am freaking out thinking that the evil thing has come back.

What should I do? Is it possible for it to come back SO soon and would a re-appearnace manifest this way?

Thanks, Jennifer

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Kim K's picture
Replies 10
Last reply 1/1/2011 - 3:23pm

Hi all,

As seems to be a problem in the field of oncology, what do do with your patient after they are no longer receiving treatment.  It has been 5 months since my last scans showed I am NED (hooray!) yet my oncology team still hadn't come up with any kind of follow up schedule for me.  Only after I flew to Honolulu for some face time (my primary onc. had a sudden emergency so I saw his associate) did I get any feedback.  My oncs. almost want to have my primary doc who knows nothing of melanoma to follow me, since I am no longer in active treatment and NED.  I told them NO because my follow up should include PET.  Queen's Hospital in Honolulu has the only PET/CT machine in the entire state.  Why would I want anyone here in Hilo to follow me when they don't have the equipment (or expertise) to do so?

Question - for those of you NED and not in a clinical trial, what are your follow-up scans and when.

I know there is no consensus on the issue, but for me, I do not buy into lets wait until you have symptoms.  By then you tend to be toast.  I have creepy crawly smoldering disease that showed up in only 2 spots after 7 years at stage IIA.  IL-2 cleared my final lesion this summer.  I DID get the associate (who saw me while in the ICU for IL-2) to agree that there needed to be some sort of scanning follow-up since I have no symptoms or abnormalities that can be detected with blood work or on a physical.

The doctor ordered a chest CT and brain MRI with a PET.  My concern with that plan was detecting any abdominal disease seeing as mel also likes the liver and small intestine.  He said he didn't think it was necessary since my mel came back to my lung and chest wall.  I disagree and want to make sure it doesn't pop back up elsewhere and we miss it.  I am sure the PET will catch it but there are also false negatives with PET that CT can detect.  Still no word as to a routine scanning schedule, let alone the kind of scans and locations to be scanned.

My gut tells me to do scans every 6 months for 2 years, and then if nothing, annually.  They should include brain MRI, PET / CT & chest / abdomen / pelvis CT.  I know if mel is planning on returning it will most likely do so within the next 2 years.  That being said, since I seem to have the slow moving mellower form of mel, I think it is OK to do scans every 6-12 months unless symptoms arise.  I just can't get anyone to commit to a game plan and I am the one pushing everything.

My goal is to catch any recurrence early so I can buy as much time for treatment or a trial when it may still actually make a difference.  I don't want to wait until my tumor burden makes itself painfully clear.  In the meantime, I deeply feel I will be one of the few that will never hear from mel again.  I hope I am right on that.  If not, I want to be as proactive as possible yet avoid necessary and costly scans.

Thoughts anyone?

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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