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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Replies by: arthurjedi007, kylez, RJoeyB

I was wondering if 2 days after my last radiation treatment is too soon for an MRI and PET/CT scans?

Basically my long distance doc on 8/13 did a PET/CT and wanted radiation done by 9/3 and wanted to do a brain MRI and another PET/CT on 9/24. But he wanted me to do radiation locally since I've had radiation there before. If the scans are ok then I can continue with the PD1. If the scan shows anything in the brain then I'm off the PD1.

So in reality locally they did a brain MRI on 8/21 in preperation for the radiation. They also did a lower spine MRI on 8/21 and I got confirmation from my long distance doc we needed to radiate 2 spots in my spine. Basically there is 1 tumor in my skull that has grown out to my scalp and inward towards my brain pressing on the dura. Nothing is in my brain at that scan though. The 2 in my spine I'm not sure how much soft tissue involvement there is but they want to prevent the occurance last winter where another spot in the spine almost paralyzed me so hit them now instead of later.

So finally I got my first zap to the spine today 9/9. Insurance was complaining because like the nurse said my local radiation doc wants to do it the more precise right way. They still haven't approved the head yet but they think they should be able to start it on 9/12. Basically I get 30 gray in 5 fractions to each spot of the spine and head. So basically each spot gets 6 gray per zap every other day. I say per zap but really it's several different zaps from various angles. I think I counted at least 6 zaps to the one spine spot today. So probably enough to get them to shrink I hope and hopefully the PD1 will then take care of them like it's shrinking over a dozen other tumors. They alternate which spot in the spine every other day. The head they will also do every other day but in combination with (or actually after) whatever spine spot for that day.

So I'm wondering whether I should just stay home and recover from the radiation and get the newly FDA approved PD1 from my local onc doc on 9/24 who I still see for my xgeva shot. Last time I saw him he said I needed to stay on the PD1 so it should be no problem as long as I give them enough of a heads up so they can take care of the insurance. Then after the radiation and some rest and recovery I can go to my long distance doc for these re-scans.

So not only am I concerned about not really being strong enough to travel the 500 miles to the long distance onc doc although I feel pretty good now. I'm wondering if scanning so soon after radiation should even be done. I remember reading one person's story who was on immunotherapy, did radiation and the doctor visibly saw the tumors shrank. So that person's doc did not want to scan yet because he saw an immune response and did not want to mess up that delicate little understood balance of the immune system if I remember that person's story right.

I'm very thankful to Joe so I was able to question my radiation doc so he changed his initial idea and is doing my head the better way. You folks are the best.

Any thoughts or suggestions are appreciated. I'm just not sure what to do.

Artie

 

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Resilient4Life's picture
Replies 5
Last reply 9/12/2014 - 2:53pm

 

Hello everyone,

This forum has been a sanity saver for me, and I thank you all for your input. My surgical consult is Friday and am illierate about the "justification" or rationale for sentinal node biopsies. I've looked at other sites and come away with an ambiguous result.

One 7mm area staged 1A by this forum, Clarks level II, shallow thickness 0.25mm. The location is near the shoulder area upper left arm, approximately 1-2 inches from a prior surgical scar (impingement) and 3-4 inches away from the apparent location of lymph node(s) in the underarm area.

Questions: what are the top determing factors for a SNL? Location and depth or something else? Would it be unrealistic or unwise to push for a needle biopsy? Should I be concerned at all? Thanks again.

 

 

 

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dirks7171's picture
Replies 7
Last reply 9/11/2014 - 5:40am

I recently underwent WLE surgery for malignant mucosal melanoma of the anal canal.  I had a large tumor (3.8 cm) that had grown into the submucosal tissue by the time it was surgerically removed in the beginning of August.  I live in Maryland where my surgery was performed and am in the process of considering adjuvant therapy now -- and am at a crossroads.  My last PET scan in July showed no metastisas but I know this is an aggressive type of melanoma cancer that can spread quickly.  My biopsy surgery pathology clearly identified the cancer as malignant melanoma.

My surgery pathology slides are being examined at Memorial Sloan Kettering.  My  doctor there is Richard Carvajal - Director of Developmental Therapeutics.  When I met with he and his team in July before my surgery (after receiving a diagnosis of malignant melanoma of the anus) and prior to examination of the slides (now underway) he suggested I might be a candidate for a chemotherapy combination therapy consisting of two drugs that have been around for a while - cisplatin (given interveniously) and temador (temazolomide) - given in pill form.  The IV and pills are given for a week - followed by a three week lapse.  This process is repeated six times.  The therapy is based on a clinical study done in China of individuals diagnosed with muscosal melanoma.  The outcome of the study suggested that the therapy prolonged the lives, on average, of the individuals who were given the chemo combo. 

Just wondering if anyone in the network has undergone the chemo combo at Sloan or any other medical facility -- or has any insights into how effective it might be?  Also wondering about experiences working with the mucosal melanoma team at Sloan.  Any suggestions on how to maximize patient-doctor communications and treatment outcomes. 

Finally, I don't know if I am C-Kit or BRAF mutation positive yet -- or much about the overall pathology biology.  Does anyone have suggestions on what type of immunotherapy might be available to me given specific mutations or other aspects of the malignant mucosal melanoma (anal) that I was diagnosed with (e.g. Gleevec)?

As you can tell I'm a newbie at this and will try and give as good as I get from anyone who can shed any light on my questions.  Thanks in advance for any information and interest.  I am frightened but hopeful.

Chesapeake Guy!

 

 

 

 

 

 

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missourimom2008's picture
Replies 7
Last reply 9/29/2014 - 9:16am
Replies by: oldblue, Anonymous, missourimom2008, malika, Tim--MRF

My husband was diagnosed a few short months ago with Malignant Melanoma, right before his 25th birthday. He has undergone 1 surgery and his pet scan just came back negative for which we are feeling very blessed. We have however been referred to a specialist at Barnes-Jewish Hospital in St. Louis due to the fact that he has a mitotic rate of 15....I know his Oncologist said ideally it should be 0, does anyone have any answers, advice, experience or information about having such a high mitotic rate? I have done some research but just am not finding much. Thank you!!

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BarbaraJean's picture
Replies 1
Last reply 9/9/2014 - 2:41pm
Replies by: Janner

I have a lump that has developed in the crook of my left elbow. Since I've had no melanoma reoccurence since the original tumor 12 years ago that was found on my back and drained under both my arms, I'm a little concerned. I went to a doctor a few weeks ago and she diagonoised me with tennis elbow but I wanted a second opionion. I saw the surgeon yesterday since my doctor was not comfortable with a second opionion without a biopsy on the mass. The surgeon wants to remove the mass and send it to pathology and here in lies my concern...should I have the surgeon remove  it or wait to see if it goes away and should I have surgery on my arm since I suffer greatly with pain for the original surgey 12 years ago? I don't know which way to turn. It hurts to bend the elbow because of the lump and so I don't know what to do..

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AlkiDancer's picture
Replies 1
Last reply 9/8/2014 - 10:06pm
Replies by: Janner

I am a 36 year old female with a VERY heavy family history of cancer including a mother who had melanoma, breast cancer and ovarian cancer who died at age 51.

 

I have a dark wide line on my right thumb and a wide lighter line on my left thumb of which I have now been to two derms for.

 

The first told me it was concerning but she didn't have the medical experience to biopsy. The second agreed to biopsy then the day of the appt. changed his mind. I was so angry I actually broke out in hives.

 

So, now I am looking for a derm in seattle that can see me SOON adn biopsy this thing. Seattle Cancer Care referred me to UW Derm but their nail derm can't get me in till Jan its early Sept.!

 

There might be a doctor assoicated with Swedish who does this biopsy but they were not sure till they could talk to him when he is back in clinic later this week... which really did not make me feel great about this over all clinics knowledge.

 

Any advice?

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AlphaDetail, a Symphony Health Solutions company specializing in healthcare research, is currently interviewing melanoma patients about treatment programs, medications, and quality of life. They are looking for patients who are Stage IIIb, Stage IIIc, and Stage IV.

The telephone interview is 60 minutes and you will need a computer with high speed internet during the interview. They are also looking for individuals willing to participate via Webcam. They will send the webcam via mail and you will be allowed to keep it after your interview ($75 value).

Interested in participating? Go to:  www.alphadetail.com/mrf

You will need to complete a pre-screen survey. If you qualify, you will be directed to a calendar to select the best day and time. If you complete the telephone interview, you will be paid $150. If you elect to be interviewed via Webcam, you will be paid $200 (plus the $75 Webcam).

The telephone interviews will be scheduled September 12-17. (Limited times may be available on certain days.)

IMPORTANT NOTE:  If you have already agreed to participate in this research via another source, we cannot interview or pay you twice. 

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nlavine925's picture
Replies 21
Last reply 9/17/2014 - 1:14am

Hi there,

I was diagnosed stage 3a in May and had the lymph node dissection in early June. I decided against Interferon and am going with the wait and watch for now.

The problem is that my immune system seems unable to stand up to anything! I'll admit that I have an 11-month old in daycare and he brings home lots of germs, but before the two surgeries earlier this year, I was able to avoid getting the colds and other bugs he brought home.

Has anyone had anything similar to this happen? Are there things that I can do to strengthen my immune system other that the typical things like getting sleep, eating well, exercising, etc. I do as much of that as I can, but it doesn't seem to do much good. I know my body went through quite a trauma and I may just need some time to heal. But I'm impatient and need to chase an almost toddler and figured someone else might have ideas to share.

Thanks so much!

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liam1209's picture
Replies 5
Last reply 9/10/2014 - 1:58am

Please let me know emails to the following doctors.  Also, If I only list the Hospital please suggest top doctor and his email if you have.  I am trying to figure out what the 1st treatment for my father will be.  Deciding whether to go ipi then anti PD-1 or if clinical trial.  

Dr. Rosenberg at NIH

Rr. Lynn schuchter at penn

Dr. weber at moffit. 

Univ of Pennsylvania

fred hutchinson 

md anderson

dukes morris

danna farber 

sloan kettering/ Dr. Wolchok

johns hopkins

mass general 

Stanford: Kim Margolin

Boston: Mike Atkins

Tampa: Jeff Webber

Nashville: Jeff Sosman

 

Thank you so much for your help!!! 

 

Liam 

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Anonymous's picture
Anonymous
Replies 8
Last reply 9/8/2014 - 9:47pm

Just wondering people's thoughts on what is the best course of action. If melanoma is detected in a major organ (lung, liver, spleen, etc) and it is resectable, is that usually the best route to take - go in and get rid of it?  Or would one consider some type of therapy (I.e. Yervoy, ipi, etc.)?  Not sure of there are any residual affects if it is just taken out. 

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rjr11273's picture
Replies 1
Last reply 9/8/2014 - 11:23pm
Replies by: Melissag0624

I had a 2.1mm tumor removed with wide excision from just above my right knee on August 19 and an SLND done as well with these results: superficial spreading melanoma with nevoid features, maximum tumor thickness 2.1mm, ulceration present, mitotic rate =4, 4 of 4 lymph nodes with micromatasteses. I am awaiting results of scans done on Friday

i am scheduled for further lymph node dissection on the 24th. Dr. Flaherty at MGH is recommending I begin pegylated interferon weekly self injections 4 weeks later due to the increased RFS for the subset of positive lymph node and tumor ulceration in the large trial done in Europe. Assuming the scans come back with no measurable metastises. I am also changing my blood pressure medicine to propranolol, just in case there is a benefit that will be tested soon at the university of Geneva clinical trial

my questions are, has any one done the weekly pegylated interferon treatment? What were the side effects you experienced and how well did you tolerate them? Did you have the side effects every day? How long did you stay with the treatments?

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Ninniditti's picture
Replies 5
Last reply 9/8/2014 - 5:52am
Hi! 
Has someone here had TIL therapy. I have not read about someone having good results from it. I am not sure if I dare to have it. I have done IPI and NIVO with no result. 
 

Inger

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Replies by: BrianP

There will be a Melanoma Support Grop meeting at 6:30 at the Life With Cancer building at 8411 Pennell Street, Fairfax, VA 22031. (map it)- https://www.google.com/maps/place/8411+Pennell+St,+Fairfax,+VA+22031/@38.8634182,-77.2351737,17z/data=!3m1!4b1!4m2!3m1!1s0x89b64c816dd8a3fd:0x42190d8850b50cc4?hl=en)

A ljuncheon earlier at a different Life With Cancer location  - about nutritiona -     Cancer with a Fork-IAH 2014:
http://www.lifewithcancer.org/ajax_classDateInfo.php?classDateID=13436

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

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