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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jamieth29's picture
Replies 19
Last reply 7/15/2016 - 6:30pm

Just wanted to say hi to everyone I've been keeping up on board. I hope everyone is doing well or on the way to doing well. Last I was on it think I told everyone of the three brain mets that developed.After srs and 1 dose of ipi/nivo i started to get light headed and new something was going on. 1 of the Mets that was treated hemorrhaged and was causing problems the other 2 shrunk from 6mm to 2mm. I also had 1 new one develop that was 7 mm. So 2 days after ipi/nivon infusion doctors decided to stop immunotherapy and go back to braf because I had such a big response to it prior. After 8 weeks mri showed original 2 and new brain met were not visible on mri. The hemorrhaged met shrunk also and showed no edema. However after about 3 weeks on braf I developed every side effect in book,chills,fever of 104+ loss of appetite change of the way food tasted etc. My local doc thought we should keep on drugs and thus is partly my fault because I knew better but I ended up in hospital for 2 days with low sodium among way walked liver function. I stopped drugs and immediately things returned to normal. Tried to restart after 8 day layoff and same result. So I then took 2 weeks off to gain some wait...Lost about 13# and reduced dose. Made it 2 weeks with no issues then chills and fever. I immediately stopped for 8 days and trying again starting this past Sunday. Had another mri at u of chicago and they think hemorrhaged met in brain may have burst from response to srs. So it's been a long 2 or 3 months of feeling like crap. Feel great right now and just going one appointment to next, body continues to be clear. Thanks for all info everyone has been posting and support we all give each other.

Jamie

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Mark82's picture
Replies 9
Last reply 7/15/2016 - 5:37pm
Replies by: Maria C, Mark82, jvictoria, momof4boys, dentholla, youngann, Anonymous

So I'm just a few days away from my second surgery in less than a month and a half . diagnosed stage 3 melanoma in two out of three lymph nodes cleared margins on the side of my temple .I'm starting to feel the anxiety losing sleep stressing out even with tons of support and a lot of faith that God will get me through this . the plan looks to dissect and extract the parotid salivary gland and remove lymph nodes in the upper neck area recovery time should be 2 weeks and after that seven weeks of radiation targeted on the neck and side of the head and then possible immune therapy treatment with two drugs .they suggested yervoy and interferon. any experience out there ? I've been reading the interferon is no good and doesn't really do anything . or just anybody that would like to pray or encourage thank you so much for this website it's been a huge help for me and my family God bless all of you

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Chance16's picture
Replies 17
Last reply 7/15/2016 - 12:29pm
Good morning everyone - Hope everyone is doing well and had a nice July 4th
 
Well, I had my visit to Moffitt and met with Dr. Khushalani and I feel it was for nothing and left me confused.  He said the mel had a 40% chance of reoccurring (standard) and he restaged me to 3B from 3C... big whoop.  He said I had four options (actually 5).
 
Option #1 - High dose Interferon for 1 year; which he highly recommends. He says it would reduce the 40% by 12% (big deal) and I would feel crappy the whole time from side effects. He also said that 50% of the country doctors are for Interferon and 50% for Ipi.
 
Option #2 - Low dose Interferon for five years....no way
 
Option #3 - Ipi; which he doesn't recommend for me for two reasons. One is that I have IBS and the concern for the colitis. The other is the study was done in the UK but the EU has not approved the drug or dosing where the US did and there is no long term data for survival until 2017.
 
Option #4 - His trial with high dose Interferon or Ipi to Pembrolizumab but I would have to get a CLND; which I don't want to do
 
Option #5 - Do nothing.  He didn't bring it up but I did.
 
So, I'm back to square one.  Right now I feel like screw it and not do anything...wait, watch and see.  The choices suck and for what real benefit????  Maybe I will one of the 60% and not the 40%.
Thank you again for listening to my rambling but I would appreciate any thoughts and suggestions.
Best to everyone
Patti

 

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youngann's picture
Replies 6
Last reply 7/15/2016 - 11:36am
Replies by: jenny22, Anonymous, youngann, Polymath

I saw Dr. Mastrangelo at Jefferson today for my initial oncology consult. His bottom-line recommendation is that I enroll in a Polynoma Vaccine trial. However, the only thing he knew about it was that there were 3 arms - 2 arms receive the vaccine and one arm recieves a placebo. He said Polynoma has been used in treating melanoma for about 20 years but he said there was 'no credible data' on it.

I'm not sure how he can recommend something that has 'no credible data' on it but he offered to have "someone who knew more about it" call me.

 

Does anyone know anything about this?

 

http://www.cafepress.com/daybreakdesigns

Home of the original "Crappy Shirt"

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Aubreesmommy41's picture
Replies 10
Last reply 7/15/2016 - 11:06am
Replies by: Aubreesmommy41, geriakt, Anonymous

So I got a copy of my path report in the mail today from March 30th of this year.. I had a mole removed from my upper arm and was told by the girl who assisted my rude non communicative Doctor that it was a stage zero meaning in situ.. The rude Doctor then sent me for a pet scan on April 30 because I had the nerve to keep asking questions.. Anxiety and all that.. Pet was clear.. I've had 3 more WLEs since for dysplastic nevi and apparently I'm done until November.. Seeing this report tho has me worried again.. I won't type the whole thing but Breslow thickness .40 mm.. Mitosis less that 1 per mm squared.. Regression present.. Ulceration not identified.. Can someone help me put this new info in perspective? I'm 41 and have a 5 month old baby to worry about.. Thank you

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laulamb's picture
Replies 13
Last reply 7/15/2016 - 7:39am

Hello,

I do not qualify for a clinical trial Dr. John Kirkwood from Hillman Cancer Center is running because I am only Stage 3a ... I needed two lymph nodes positive for melanoma and I only had 1 positive.  I am also BRAF negative.  Hillman Cancer Center is saying the only option for me right now is Interferon.  They are saying my insurance company will not pay for adjuvant therapy in Stage 3.  I do not want to do interferon, nor does my local oncologist want to give it to me. 

My local onolcogist recommended I go to clinicaltrials.gov and find a clinical trial or call Cleveland Clinic to see if they have any options for me.  They are going to call their Merek and Bristol Myers reps to see if there is any way to get me the adjuvant therapy drugs.  I am beyond frustrated at this point.

My oncologist's did not even try to call my insurance company to see if anything would be covered ... is this normal? 

Does anyone have any suggestions? 

I did find two clinical trials.  But the one is located in RI and the other is being offered in MO, IA and GA.  I live in PA. 

Thanks in advance!

 

 

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NancyGM's picture
Replies 4
Last reply 7/14/2016 - 11:41pm
Replies by: NancyGM, Swanee, gigembritt

Has anyone experienced tender nodes (rather than hard, painless nodes) turn out to be mets? I have no infections currently and blood work a couple months ago was good. I have been NED for 8 years, but still worry with symptoms that last....My heart goes out to all dealing with melanoma...

NancyGM

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lscarr's picture
Replies 4
Last reply 7/14/2016 - 5:19pm
Replies by: Landlover, Anonymous, Bubbles, MoiraM

Hi All, this is my first post, I'm 3b. I joined the party on 4/28/2016, primary mole on temple came back pos for S100 (1.4mm, no ulceration); 5/19/2016 OR SLNB one pos, one neg (both nodes were in the parotid gland, whose tissue was negative) and WLE (negative); 6/21/2016 paritodectomy (1 node pos, 2 nodes neg, gland tissue still negative) + level 1 and 2 LN neck dissection (all 16 nodes negative).  PET and brain MRI clear so far. 

Need to decide on whether to just start ipi on 7/18/16 or to enroll in S1404 which gives me a random possibility of ending up with pembro.  S1404 will also provide PD-L1 testing.  Again because it's random, I won't know until I enroll whether I'll get the pembro.

Questions for the group:

1) Is anyone out there in this study and if so, which arm?

2) in general does anyone have firsthand comparison between ipi and pembro side effects?  I know it's different for everyone.

Thanks all for your inspiration and communication.

susan

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I started a new post earlier this week titled "Obdivo and Yervoy Regimen."  My significant other is at the end of the regimen of Opdivo and Yervoy (it has been 3 months of both of those, every 3 weeks), and they are starting him with a new regimen of 5 treatments of just Opdivo.  We met yesterday with the oncologist to get the PET scan results.  Unfortunately, the tumor in his stomach has grown.  The oncologist will be meeting with the cancer board of the hospital and will get back tu us.  We are not sure if the tumor can be operated on since it is now so large.  The doctor was very surprised since with such a large tumor, she would think that he would be in much greater pain.  We are told to hope for the best but prepare for the worst..  Has anyone dealt with melanoma that moved from the original location to the stomach?  My S.O. was first diagnosed with melanoma about 6 years ago (on his back) and they biopsied and cut a margin and removed it, with a couple of lymph nodes, and 5 years thereafter, said everything looked good.  Then earlier this year, we were informed that the cancer had moved from the back to his stomach.

 

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jvictoria's picture
Replies 10
Last reply 7/14/2016 - 11:16am

So, I have gotten conflicting advice on getting flu shots and having Melanoma. Some have said "don't worry about it" and then some have said "don't do it because it might compromise your immune system"

Has anyone gotten any advice on this topic or seen any research?

I'm only asking because I was planning on volunteering at my hospital's infusion center and the hospital requires flu shots for all volunteers.

 

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Ginger8888's picture
Replies 18
Last reply 7/13/2016 - 11:06pm

Has anyone tried this?...I have been doing some reading on this in hoping it will be come legal in my state soon.I've read a lot of success stories..

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laulamb's picture
Replies 2
Last reply 7/13/2016 - 11:03pm
Replies by: desertsun, Janner

Can someone help me understand what this means?  No mutuations or BRAF?

 

ONSIGHT NGS BRAF SEQUENCING REPORT:

NO MUTATIONS IDENTIFIED.

THIS WAS A NORMAL SEQUENCING STUDY IN WHICH NO DISEASE ASSOCIATIED MUTATIONS OR VARIENTS OF UNCLEAR SIGNIFICANCE WERE IDENTIFIED IN THE TESTED SPECIMEN WITH BRAF (EXONS 11, 15) INCLUSIVE OF V600

CLINICAL AND PATHOLOGIC CORRELATION IS REQUERED TO INTERPRET THESE FINDINGS:

 

 

 

 

 

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Ajwells's picture
Replies 4
Last reply 7/13/2016 - 5:10pm

My brain MRI was about 4 weeks ago. I just got the results in writing and reading through them I noticed something interesting. 

First, of course, it states that there is no evidence of metastatic disease. 

Under that it states that there is a 4mm left parietal calvarial nodule adjacent to the lambdoid suture most suggestive of a post sutural epermoid though setting follow up of stability may be warranted.

I'm guessing this is from the insicion on my scalp from the melanoma removal?   

My surgeon didn't tell me about this, so I'm guessing she didn't feel it was a problem. But should I ask about it to get more information?  I don't think I will be getting another MRI for quite a while since I haven't even started immunotherapy yet. I meet with the medical oncologist tomorrow. Maybe I'll ask her. Just my anxiety hanging out over here. 

27 year old mother of three. Diagnosis stage 3a.  Awaiting immunotherapy. 

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Thanny's picture
Replies 3
Last reply 7/13/2016 - 2:56pm
Replies by: Sflynn, desertsun, geriakt

Hello all, I'm developing dry and flaky skin around the corners of my mouth and on my eyelids. I'm not having any luck keeping it at bay with neosporin or lotion. If you have any suggestions please help. 

 

Regards,

 

Tanny

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