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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MattF's picture
Replies 3
Last reply 7/24/2014 - 6:56pm

quick question...

hey everyone...various bone mets....Spine (few spots), bilateral humerus and bilateral femurs, pubic bone hips etc.

currently in between Chemo Treatments

switching from BRAF Combo to Yervoy in the next week.

 

I have pain in hips and legs and understand that pain from 

Has anyone had physical pain on the skin over or above a bone met?

 

I mean the outside of my shoulder/arm is burning....in a very small spot. But it is intense.

please let me know

Matt

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/24/2014 - 3:25pm
Replies by: jualonso

Is there a washout period for Dabrafenib required before the start of antiPD1?  My hubs was supposed to start antiPD1, so he was taken offf Dabrafenib for a month long washout and almost immediately he started to feel sick, nauseous, tired.  Also, in 4 days, he started to feel some of his tumours starting to grow.  Dr. phoned a week later ( my husband was feeling progressively worse) and said it will be another month until hubs gets antiPD1, and when he heard my husband feels this's sick he recommended to go back on Dabrafenib until pd1 is available.  In two days his vomiting stopped, and  his tumours started shrinking again.  

It was shocking -to say the least- how fast everything changed.  I know it's a matter of time until he will get antiPD1. But now I'm really worried that his condition will deteriorate very rapid when he'll go off Dabrafenib in the washout so I'm wondering why a washout period and not take it  until the day before the first pd1 infusion.  Also, let's say, he's taking it without dr's knowledge, will this show up in blood tests?

we were aware how quick things may change when interrupting Dabrafenib, but to get this sick in a matter of days was shocking and eye opening.  And very scarry.

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ncdaniel's picture
Replies 8
Last reply 7/25/2014 - 12:50am

Velma Krumm my wife of 44 years died of melanoma. I want to thank all the people from MRF who post and read this site. I received advice several times on this site that was vital to my wife,s care ( thanks nykaren) . All who post and answer perform a vital service to all.  My wife and I were very fortunate to have a doctor in Boone, No who after removing her tumor and telling us she had stage four cancer to go to a melanoma specialist for treatment. We did that and in am sure because of her care at the university of Michigan she live a lot longer than initially thought.  So for all who read this please make sure you are seeing a melanoma specialist it could extend your life or pro idea cure. I know without a doubt Velma is in heaven and now NED.  All who post , read and answer keep up the good work.

    Daniel

 

 

Trust in God - Live one day at a time

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Velma Krumm my wife of 44 years died of melanoma. I want to thank all the people from MRF who post and read this site. I received advice several times on this site that was vital to my wife,s care ( thanks nykaren) . All who post and answer perform a vital service to all.  My wife and I were very fortunate to have a doctor in Boone, No who after removing her tumor and telling us she had stage four cancer to go to a melanoma specialist for treatment. We did that and in am sure because of her care at the university of Michigan she live a lot longer than initially thought.  So for all who read this please make sure you are seeing a melanoma specialist it could extend your life or pro idea cure. I know without a doubt Velma is in heaven and now NED.  All who post , read and answer keep up the good work.

    Daniel

 

 

Trust in God - Live one day at a time

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casagrayson's picture
Replies 2
Last reply 7/25/2014 - 12:38am
Replies by: Swanee, vicuk

I'm worried.

Strength and Courage,

Susan

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Hi-

I had a melanoma on my thigh last year that was removed. It was also in the lymph nodes and I went back in for another surgery in Feb. to have the rest of the nodes taken out of my right groin.

On Monday I went for a check up and there is a hard lump near the area where I had the surgery. I am having an ultra sound needle biopsy on Friday. My surgeon said that it could be a seroma or the Melanoma has grown back. Has anyone else ever experienced this? I know that seromas are common but it's pretty hard.

 

Thank you!!!

 

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Anonymous's picture
Replies 2
Last reply 7/23/2014 - 5:02pm
Replies by: Bubbles, RJoeyB

Hi Everyone,

I hope there is someone out there who knows what this means.  My PET says there is decreased bone marrow activity and a trace of pleural effustion. This is in addivtion to tumor progression.   I've tried to google, but it's all too technical.  If anyone can shed some light on this, I would really appreciated it.  Thanks!

God bless to all!

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stampers's picture
Replies 4
Last reply 7/24/2014 - 1:56pm

I just had a mole shaved from my leg last week and then I got an email from lab stating that I need to see a dermatologist ASAP that I have superficial spreading melanoma.  I called my doctor and she referred me to a dermatologist but did not really give me much information.  I called the dermatologist office and she said he would explain everything on Monday when I get there and to be sure to have all my questions ready.  She said there was a chance I could need a plastic surgeon.  I asked her if I should be worried and she said that not too many of their patients ever need chemo but some do.  This is really all the information that I have received from the doctors or receptionist.  I have now been reading on this website and have been worrying ever since.  If anyone has any information that could help me until Monday, I would greatly appreciate.

Thank you.

 

Stampers

Stampers

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Anonymous's picture
Replies 5
Last reply 7/27/2014 - 9:50am
Replies by: buffcody, Anonymous, ncdaniel, King
On June 13, 2014 my father was diagnosed with stage IV melanoma of the small intestine.
 
A few days earlier my father told his heart doctor that he was feeling fatigued for a couple months now which then they decided to do blood work. His hemoglobin game back at 6.5.
 
After the blood work came back we immediately went to the ER for a blood transfusion. Due to my fathers heart condition they could only give him so much blood. After the transfusion his hemoglobin was at 8.6. They immediately started him on ferrous sulfate (iron) which naturally raised his hemoglobin to 10.3 and his holding steady. 
 
Once the pet scan and cat scan came back, it showed a couple mets on his lung, heart wall, chest muscle, groin and thigh muscle as well as the three tumors in his small intestine. The doctor at Toledo said we needed to test for BRAF and start treatment right away. Why wouldn't they remove the ones in the small intestine?
 
We immediately knew that we wanted to see the melanoma specialist up at University of Michigan and started the intake process. 
 
Since University of Michigan couldn't get us in till mid July, we pushed the Toledo doctor/oncologist to start my dad on something. Two weeks after he was diagnosed he started Yervoy. We refused to wait any longer. The Toledo oncologist has consulted the U of M specialist with every decision they have made for my dad because she was so nervous what the yervoy could do with his GI problems.
 
Our appointment with U of M was supposed to be July 15th but the specialist called us and cancelled it. Said they didn't feel comfortable transferring his medical care during treatment. Everyone wants us to go up to U of M but I don't know why there is a problem with transferring treatment? 
 
He just had his second treatment and has had no side effects besides fatigue and we pray it stays that way. He says he feels nothing is wrong. Hemoglobin is steady above 10, no pain and his appetite is great.
 
The doctors say they are extremely confident in Yervoy. And that they want my dad to finish the Yervoy treatments at Toledo because it's exactly what they'd be doing at U of M. Also that they've been working together on his treatment. U of M said after the fourth treatment they will do pet scans and cat scans to determine how the Yervoy worked. If it didn't work they would put my dad in the trial coming up at the end of his treatment.
 
Is it common not to transfer during treatment? Should we look for another specialist? It seems as though the Toledo oncologist and the U of M specialist are working side by side. When we speak with them separately they say the same thing.
 
Am I overreacting? I feel as though I need to calm down but this is my dad and i want the best care for him.
 
Kind words of encouragement are appreciated as this is really hurting us.
 
Thank you
Kiley
 

“Nothing is impossible, the word itself says 'I'm possible'!”

― Audrey Hepburn

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/24/2014 - 2:00pm
Replies by: ltalley, BrianP, Anonymous

Hi just been diagnosed with sta lge 4 mm in spleen liver and brain. Just wondered who else stage 4 how long you been that way and What treatment you had
Thanks

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In order to know a very important question, if after Braf. Inh. people respond well to inmunotherapy would be very usefull that people who has been a complete responder to inmunotherapy (IPI OR PD1)  be here to make us know that is possible.

Thanks to all of you

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JerryfromFauq's picture
Replies 1
Last reply 7/23/2014 - 6:52am
Replies by: theresar

Mucosal Melanoma: Durable Tumor Response Associated with Severe Hypothyroidism and Rhabdomyolysis
http://cancerimmunolres.aacrjournals.org/content/2/1/15.abstrac

To our kknowledge, this is the first case reported of a patient with advanced mucosal melanoma who responded to anti-PD1 therapy

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

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hchemotti's picture
Replies 8
Last reply 7/25/2014 - 10:35pm
Replies by: hchemotti, ltalley, Anonymous, hbecker, Janner

Hello, I just this week got diagnosed with Melanoma, on my collar bone. Have not gotten the specifics, but have been sceduled for a wide ensicion next week, thier first available appointment. I am very nervous, I am open to any information that would help in this situation.  I am also oddly expeirencing pain in my left underarm, starting around the time of the biopsy.  I am also worried because it is so close to my neck that it may be easier to spread? I wish they would tell me more over the phone. Any help would be great.

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BrianP's picture
Replies 4
Last reply 7/23/2014 - 12:14am
Replies by: RJoeyB, BrianP

Live on line seminar today from 11:00 to 1:00 Eastern.  Topics include immunotherapies, targeted therapies, and emerging therapies.

Register Here:

http://www.omedlive.com/en_CA/br/melanoma/refcode=Elsevier-PracticeUpdate-Melanoma-072214%20

(form is for medical professionals but I answered as best I could as a patient and had no problems registering)

Advancing the Management of Patients with Metastatic Melanoma

Live! Complimentary, Online Continuing Medical Education

11:00 AM - 12:00 PM ET - The Evolving Role of Immunotherapy in Patients with Advanced Melanoma

Sapna Patel, MD, MD Anderson Cancer Center

Patrick Hwu, MD, MD Anderson Cancer Center

 

12:00 PM - 1:00 PM ET - Targeted Therapy in Melanoma

Michael A. Davies, MD, PhD, MD Anderson Cancer Center

Patrick Hwu, MD, MD Anderson Cancer Center

 

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tommy90's picture
Replies 8
Last reply 7/22/2014 - 12:49am

Hello all,

 

I went to see my dermatologist today. showed him the mole in question (here is high res picture: http://oi58.tinypic.com/25i0jmo.jpg

He took a look and said "it's so small" and I insisted it had changed. it has...

- gotten darker

- gotten bigger

- the edges you can see are blurry and DEFINITELY GROWING/CHANGING

- had hair growing through it, does not anymore

- gotten "thicker"/more raised

He said "change happens" and I was like 'WTF change does not just happen over the course of 6 months, and if it does, it is concerning!" and he said he would cut it out for me but it would be a voluntary procedure and would charge me $175. I agreed. He said if ANYTHING is atypical, he will refund my money 100% and we will do more testing.

I now have stitches! Yay :) so, it's out. do you agree with my derm, or is he being negligent? I have read loads of stories where people have betted their derms that this IS concerning, and won those bets. And I know lots of you post stories on melanoma.org about how your tiny mole turned out to be mel, so seriously... I can't believe he just said he didn't even wanna cut it out.It changed!! A lot!!!

I find the results out August 6th.

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