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.

Expand/ Collapse Topic
 
Replies By
View Topic
Anonymous's picture
Replies 6
Last reply 7/28/2014 - 7:56pm
Replies by: Anonymous, buffcody, 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

 

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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.

Login or register to post replies.

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

 

Login or register to post replies.

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.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 7
Last reply 7/27/2014 - 9:42am

Just been diagnosed with stage 4 melanoma in liver spleen and brain.therefore would love to here stories from other stage 4 people about how long they been surviving it for and where they have it. Thanks

Login or register to post replies.

theresar's picture
Replies 15
Last reply 7/23/2014 - 6:58pm
Replies by: CHD, theresar, Anonymous, mary1233, JerryfromFauq, Phil S, Teochasse, Becky

This is my first post here and it is amazing and so supportive to read and hear others experiences and know that I really am not alone in this battle that I am facing.

I was diagnosed with vulvar melanoma almost 3 years ago had extensive surgical excision with "clean margins and negative lymph nodes". This past May I developed a fever that lingered for 10 days and after finally seeing my MD a work-up ensued that revealed Metastatic lesions in my liver and lungs. I will begin Yervoy treatments in 3 days. My tumor cells are "wild-type" not BRAF so my understanding is that the Meds to treat the BRAF type are not in the treatment plan at this time.

Wondering if there is anyone else out there being treated for the Mucosal type metastaic Melanoma and how it is going. Also wondering if others have been allowed by their oncologists to try adjunt therapies- specifically I'd like to try Essiac Tea. Will discuss with my oncologist this week.

My prayers go out to all of you. Thank you for your stories of HOPE.

Theresa

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 7/25/2014 - 11:46am
Replies by: ltalley

http://www.wggb.com/2014/07/20/mass-boy-diagnosed-with-cancer-wants-cards-for-his-birthday/

 

If you would like to send a card to Danny, you can mail it to:

Daniel Nickerson
P.O. Box 212
Foxboro, MA 02035

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 7/23/2014 - 9:05pm
Replies by: drew5, Janner, Becky, Anonymous

My baby was just diagnosed with Spitzoid Melanoma on Wednesday. He is at the Huntsman Cancer Institute with Dr. Andtabackca. His surgery will be August 5th but on August 4th they will inject a radioactive dye into his tumor site on his back. They have not given a stage yet. Is that to be determined after the surgery? He had had the tumor for a year and half. The pediatrician thought it was a wart at first, but then it never went away. Any advice on what I should be doing to help my son. I don't want to reinvent the wheel, so any words of advice/encouragement will be gratefully welcomed!

Login or register to post replies.

Anonymous's picture
Replies 1
Last reply 7/22/2014 - 3:45pm
Replies by: Leslie'sHusband
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

ScaredV's picture
Replies 7
Last reply 7/22/2014 - 3:32pm
Replies by: Thandster, ScaredV, vlmd1986, 5dives, Anonymous

Hello everyone,

My fiance and I will be meeting with a new surgeon/oncologist in two weeks to discuss him getting a SNB.  Unfortunately, this is happening after his WLE, which was done in April.  We are still hoping that this will give us some extra piece of mind and that it will come back negative.

I was wondering, what questions should we be asking at the consultation?

Are there any other tests we should be requesting at this point?

Also, how invasive is this type of surgery? His original lesion was on his jawline, so I am assuming the nodes will be taken from his neck... Is this correct?  How much time will he need to recover and return back to work?

Thank you so much, I dont know what I would do without this website. 

 

 

Login or register to post replies.

 

Hi all,

Is the above medication known to people on here?

It was reported in a UK paper called The Guardian a few weeks ago.

Regards,

Nigel.

 

Login or register to post replies.

Pages