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.

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Replies by: bruski1959

The same surgeon that removed Jackie's lymph nodes in August will be installing a port tomorrow. The port will be used for her weekly blood draws as well as the Yervoy infusions. Paperwork has been done with oncologist's office and specialty pharmacy to get the Yervoy delivered to our local cancer center. Yervoy has been requested for Thursday or Friday. Jackie will have the first Yervoy infusion Thursday or Friday if all goes well. We got a "treatment bible" from the oncologist's PA today, and have a much clearer idea of what to expect, who to call, what numbers to call etc. Her oncologist has treated melanoma before, and also has experience treating melanoma with Yervoy. Jackie also has an oncologist that has treated melanoma at the Mayo Clinic that we are working with who also is experienced treating melanoma with Yervoy.  We appreciate your feedback, your thoughts and your prayers as we take the next step in Jackie's battle with melanoma (left ring finger amputated, lymph nodes left armpit removed, lymph nodes metasteses recurred, PET scan shows melanoma in liver and lungs, liver biopsy postive for melanoma). 

Thanks,
Bruce and Jackie

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The same surgeon that removed Jackie's lymph nodes in August will be installing a port tomorrow. The port will be used for her weekly blood draws as well as the Yervoy infusions. Paperwork has been done with oncologist's office and specialty pharmacy to get the Yervoy delivered to our local cancer center. Yervoy has been requested for Thursday or Friday. Jackie will have the first Yervoy infusion Thursday or Friday if all goes well. We got a "treatment bible" from the oncologist's PA today, and have a much clearer idea of what to expect, who to call, what numbers to call etc. Her oncologist has treated melanoma before, and also has experience treating melanoma with Yervoy. Jackie also has an oncologist that has treated melanoma at the Mayo Clinic that we are working with who also is experienced treating melanoma with Yervoy.  We appreciate your feedback, your thoughts and your prayers as we take the next step in Jackie's battle with melanoma (left ring finger amputated, lymph nodes left armpit removed, lymph nodes metasteses recurred, PET scan shows melanoma in liver and lungs, liver biopsy postive for melanoma). 

Thanks,
Bruce and Jackie

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piii's picture
Replies 12
Last reply 1/25/2012 - 11:39am

Just an update – and venting. I did the one month high dose and started the year of low dose but I decided to stop today. I know the high dose was going to be tough but I could get through 1 month I just can’t go a whole year with the symptoms. They are just as bad as the high dose. My wife feels I am giving up. She is pretty mad tonight but I think she is afraid if I give up it will come back. I am not giving up – I need to feel good to start living again and not worry about cancer. I believe the positive mind is a powerful thing and I can go a whole year feeling like I do know. Anyway thanks for reading.

 

Peter

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gtown's picture
Replies 5
Last reply 2/14/2013 - 8:22pm

Just had a chest x -ray which came out clear but while waiting for the results my brain started going into overdrive. Is there a place where I can find the survival rates of people that have nodular melanoma only? If my lesion started as a open ulcer and then closed up could this be construed as an ulcerated lesion? The biopsy results said that it wasn't ulcerated. How do they determine an ulcerated lesion? My doctors secretary said it was done microscopically. ( I been trying to connect with my doctor but we're playing phone tag )  Can anyone point me to a website for a diet for this disease?

My SNB came back clear in May of 2011 has anyone had the disease progress to other parts of the body with a clear SNB? Just give me the truth and I'll deal with it.

Thanks in advance

Gtown

Nodular Melanoma 1.9 mm on shoulder diagnosed 4/ 2011  Taken out at U of P hospital 5/2011

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djcota's picture
Replies 8
Last reply 1/31/2012 - 6:46pm

Where do we start?  Husband just diagnosed with malignant melanoma:  head is spinning, frustrated.  Have many questions/concerns.  Next surgery date not till Feb. 15!!!  We feel that is too far away.  We would rather be safe than sorry.  Presently seeing dermatologist--should we jump the gun and go to another Dr.?  Where can I find the most up to date and accurate information? 

We would appreciate any information you can give us.

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samcanada's picture
Replies 5
Last reply 1/25/2012 - 11:50am
Replies by: dodgedh2, Gene_S, TracyP, bdhf, Janner

My husband just had his first visit with an oncologist last week during which she informed us that he has a 40% chance of recurrence.

My question is, and I know this may sound silly, does that mean that he has a 60% chance of being just fine and this being gone?

I was under the impression that is was just a matter of time before this showed up again, that it was pretty much a done deal if you will. Every story I have read seems to point to the fact that it will definately come back so I'm not sure what to believe?

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Jerry from Cape Cod's picture
Replies 6
Last reply 1/24/2012 - 12:48pm

Hello all,

I just wanted to give you a very brief and I mean very brief update on my progress.  The paralysis on my right side is almost complete disappeared.  Unfortunately, I have a lot of muscle to repair and train again.  My left side has finally to everybody's amazement started to respond. 

 

Frankly, we all expected me to come out of Rehab with not much hope of left side recovery, but what was seen in the last two To three weeks has given us a tremendous amount of optimism for some decent level of left side response and return to useful status.  So when I walked to the great unknown with a lot of confidence in my rehab team and hope that my nerve pathways continue to look for alternative routing.

as far as a "Mass" in the neckwe really don't have any idea of what it is and currently what it's doing.  We have an MRI did for at least three months as I am remaining stable or improving in that area.  Depending on how you interpret the results to date.  The plans are to have updated MRIs done within the next three weeks and have a meeting with the clinical oncologists.  Shortly thereafter to review what's going on.  Because of the high dosage steroids and other meds I'm on and the fact that I'm going through active rehab with what appears to be stable, Mass. we frankly don't intend to do a thing for a while.

Due insurance restrictions.  I've moved to a smaller, but Okay Rehab facility But I was fortunate to be able to "select" two great specialiststo ensure I get the most for the time limitations and equipment shortness.

I'm trying to gather all the experiences to post in the blog and will try to have an update by the end of the week.

and most important of all, thank you all who have sent e-mails, cards, phone calls prayers and just plain kindness.  It is held so much get through this time.

Jerry from Cape Cod

note: Composing this e-mail required using the assistance of voice recognition software. I proofread diligently but find I sometimes miss errors. I'm still "training" the software but I notice capitalization, punctuation and usage problems crop up from time to time. Please let me know if you have any questions about content meaning, or questions that may have been caused by the interpretation of the software.. Thank you for your understanding.

 

 

 

 

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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himynameiskevin's picture
Replies 6
Last reply 4/26/2012 - 8:47pm

I've got a few random questions,  if any one has any answers or insights, I would love to hear. Help put my waiting/worried mind at rest.

1. I finished my last dose of Yervoy on Dec 20th and so far it doesn't look like I am going to benefit from it. The last time I talked to my doctor, he mentioned that he wouldn't give up on it just yet, and explained that sometimes it take a while to "work". Has anyone experienced any kind of delayed or late response?

2. As of about 5 days ago, I am experiencing what seems like mild paralysis in my left hand/wrist. No pain/numbness/tingling, it's just not quick to respond. Like my fingers don't wiggle or move as usual. It's a bit clumsy I guess. I read this could be an uncommon side effect that could arrive weeks/months after the last dose. Every time I went in for a dose of yervoy a few of the numerous questions asked if I've been dropping things or have had trouble gripping. Has anyone experienced this?

3. After finding out I have three brain mets last Friday, I understand that this paralysis feeling could be something neurological, maybe there's one of the lesions is causing pressure and problems? If that's the case, has anyone experienced something similar? If that what's causing the problems and the stereotactic radiation successfully takes these guys out this week, could i expect my hand to come back to normal?

 

That's it for now. Thanks in advance. For anyone wondering, I have an appointment with the radiation oncologist on Tuesday to see about zapping these guys out. As for the results of my ctscan, I still don't know. I dropped off the disc last Tuesday, called twice but have yet to here back, I'm not sure if that's a good thing or bad thing. My doctor is a great guy and never seems to waste a second informing me, so I'm sure there's an explanation. Should be getting a lot of news this week, I'm a bit worried, but doing my best to stay optimistic and hoping for the best. -Kevin

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Ali's picture
Replies 13
Last reply 1/23/2012 - 8:39pm

We are going to start radiation early next week of the femur and ischium.  I have not done much research on radiation.  Wondering what I should expect as far as fatigue or other side effects.  Has anyone else had radiation to thier bones?

Then the next week we start with IL2.  The Dr. thinks that maybe the radiation that will help the pain, could get the body's immune response going and increase the effectiveness of the IL2.  He said he used to not even offer IL2 for patients with bone and liver mets (I have both), but now thinks with radiation it is worth a try. 

In between rounds (there is a 4 week break) I will fly to NIH and have some subqs taken out to try and harvest them for a TIL trial in case we get there.

If the IL2 is not working, we switch to IPI.  If we get into some trouble we get on the braf inhibitors. 

I really liked the plan.  Just praying I have time to give everything a chance.  This has been a very tough week for our little family.  I am so ready to fight for this heartbreak  to go away!

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j.m.l.'s picture
Replies 2
Last reply 1/21/2012 - 2:23pm
Replies by: Donna M., scots

two tumors in arm, 4 prev removed. newest one on an artery. Surg. doesnt know whether it is on the artery or wrapped around it.

chemo did not shrink anything. most nodes prev removed but those damn mel cells are still lurkng around. Monsters arent they. Surg. says if mel is wrapped around he will leave it and then apply radiation. If lying on artery he could remove carefully. Scary to what can happen to my arm.

just dont need this in my life (65yrs)

To those w. lympedema concerns, I have it after 40 nodes removed. It can be managed. Use of a stocking daily and go for special lympedema  therapy. Its a commitment but worth it so your arm or leg doesnt get out of control. Unfort. you cant do the therapy yourself- you need the specialist.

thanks JML

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Replies by: triciad, LynnLuc

anyone experience palms that get red and itchy with little red bumps and hives?? Driving me nuts...sore, skin peeling started on palms now on wrists and sides of fingers...been going on for over 3 weeks...I am going to endocrine doc on Tuesday....

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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anyone experience palms that get red and itchy with little red bumps and hives?? Driving me nuts...sore, skin peeling started on palms now on wrists and sides of fingers...been going on for over 3 weeks...I am going to endocrine doc on Tuesday....

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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Lauri England's picture
Replies 2
Last reply 1/21/2012 - 6:14pm
Replies by: NYKaren, lhaley

I ended up getting sick Wednesday night, throwing up and diarrah.  I assume a flu bug but I rescheduled my appt at Onc for Thrusday and was informed that my doctor only works clinic on Thrusdays now so I had to reschedule for another week.  I also rescheduled my appt with Melanoma clinic Friday just to be safe, although I was feeling better.  Anyway everything is postponed another week before I can ask questions or get any further info about my Pet results.  I do have an appt with dermatoligist Monday to have that thing on my neck biopsied.  He said it would be a punch biopsy.  What ever that means.  He also saw a suspecious mole on my right shoulder blade on my back that he also wants to remove and diopsy.  I had this appointment on Wednesday to at a new dermatoligist office.  Dr Miller and he was great.  I really liked him and he was very melanoma knowledgeable.  He said he found and sent 3 patients in the Lansing area to U of M for Melanoma last year.  He was very through.  I think it was one of the most through exams I have had since U of M.  Anyway very happy with him.  More moles to remove.  Yippy!!!

Don't sweat the small stuff. There are bigger fish to fry!

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Patients on Vemurafenib Need Testing for RAS Mutations
Secondary Cancers a Concern

Nick Mulcahy

January 20, 2012 — Patients with advanced melanoma who are treated with vemurafenib (Zelboraf, Plexxikon/Roche) should be tested for RAS mutations, according to an editorial published in the January 19 issue of the New England Journal of Medicine.

A study that accompanies the editorial reports that RAS mutations frequently occur in secondary skin tumors that develop in vemurafenib-treated patients.

The testing is necessary because there is "potential for secondary tumor development" that arises from treatment with vemurafenib and other BRAF inhibitors, writes Ashani T. Weeraratna, PhD, from the molecular and cellular oncogenesis program at The Wistar Institute in Philadelphia, Pennsylvania, in her editorial.

These secondary skin tumors — namely, cutaneous squamous cell carcinomas and keratoacanthomas — are relatively benign, compared with melanoma, and are no reason to discontinue vemurafenib, said Dr. Weeraratna. However, testing will alert clinicians to which patients have RAS-driven secondary tumors.

The testing is important because patients with RAS mutations could also develop secondary cancers in organs beyond the skin, advised Dr. Weeraratna.

"If patients have RAS mutations they should be monitored closely for any development of cutaneous squamous cell carcinomas in all organs," she told Medscape Medical News.

"Although cutaneous squamous cell carcinomas are not deadly, these lesions can be life-threatening when they occur in other organs," Dr. Weeraratna writes in her editorial.

She discussed other potentially affected organs.

"Squamous cell carcinomas can potentially arise in any organ with a squamous epithelium, essentially a layer of flattened epithelial cells that line the basement membranes of organs. A squamous epithelium is found most often in organs where rapid filtration and diffusion is necessary, such as the alveolar lining of the lungs and the glomerulus (kidney). Thus, squamous cell carcinomas can be found in organs such as the lungs, cervix, and esophagus, and also account for a large proportion of head and neck cancers," Dr. Weeraratna explained.

Importantly, there is no evidence that vemurafenib triggers tumors in other organs. "It is as yet unclear whether the generation of squamous cell carcinomas in these organs, upon BRAF inhibitor therapy, occurs, but these data certainly alert us to that potential risk," she said.

MEK Inhibitors May Help

In this study of melanoma patients, the investigators sought to characterize the molecular mechanism behind the development of secondary skin cancers in patients treated with vemurafenib.

They admit that a skin cancer drug that causes other skin cancers is unexpected.

The development of cutaneous squamous cell carcinomas and keratoacanthomas "is the opposite of what would be expected from a targeted oncogene inhibitor," write the study authors, led by Fei Su, PhD, from Hoffman-La Roche Pharmaceuticals in Nutley, New Jersey.

In their search to understand this toxicity, the investigators analyzed the DNA of a sampling of these tumors and found a high rate of RAS mutations (21 of 35 tumors; 60%).

"Mutations in RAS, particularly HRAS, are frequent in cutaneous squamous cell carcinomas and keratoacanthomas that develop in patients treated with vemurafenib," write the authors.

"This study points out that BRAF inhibitors should only be used in patients who have cancers driven by BRAF mutations, and it raises the concern that cancers driven by RAS mutations (KRAS, HRAS, or NRAS) can be paradoxically activated instead of inhibited with this class of drugs," said coauthor Antoni Ribas, MD, PhD, in email correspondence with Medscape Medical News. He is from the division of hematology–oncology at the UCLA Medical Center in Los Angeles, California.

Why patients treated with vemurafenib have such a high rate of RAS mutations in these secondary cancers is not known.

However, the investigators performed animal-model studies that suggest that the development of RAS-mutation-driven secondary tumors might be prevented with a MEK inhibitor, another class of drugs. There might be "usefulness of combining a BRAF inhibitor with a MEK inhibitor to prevent this toxic effect" of secondary cancers, write the authors.

There has already been clinical investigation of this concept — a phase 2 study of the combination of the MEK inhibitor GSK1120212 and the RAF inhibitor GSK2118436 in metastatic melanoma.

That study, which was presented at the 2011 annual meeting of the American Society of Clinical Oncology, and reported 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.

N Engl J Med. 2012;366: 207-215, 271-273. Abstract, Editorial

Medscape Medical News © 2012 WebMD, LLC
Send comments and news tips to news@medscape.net.

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

Authors and Disclosures
Journalist
Nick Mulcahy

Nick Mulcahy is a senior journalist for Medscape Medical News and covers oncology. He was a recipient of a journalism fellowship from the National Press Foundation in 2010. Formerly, Nick was a freelance medical news reporter for 15 years. His byline appeared on washingtonpost.com, usnews.com, yahoo.com, and many other Web sites. He previously reported for International Medical News Group (Elsevier), MedPage Today, and HealthDay. Nick is also the former managing editor of breastcancer.org. A graduate of the University of Pennsylvania, Nick is based in Philadelphia. He can be contacted at nmulcahy@medscape.net.

Nick Mulcahy has disclosed no relevant financial relationships.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Gene_S's picture
Replies 2
Last reply 1/23/2012 - 8:45pm
Replies by: Judy D, KatyWI

BRAF-1 Inhibitors Accelerate Growth of Cutaneous Non-Melanoma Tumors

This subject was on my local news... I am not sure of what to make of it, ie. melanoma being featured on my local news?

Maybe times are really changing? Did some research and would suggest checking out the following link for more info..

http://search.yahoo.com/search;_ylt=AgW12HnKUUAZKzV.NoAb6WKbvZx4?p=BRAF-1+Inhibitors+Accelerate+Growth+of+Cutaneous+Non-Melanoma+Tumors+&toggle=1&cop=mss&ei=UTF-8&fr=fp-yie8

Best Wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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