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.

Failed Bio-Chemo Need Advise on PD-1 Antibody Combo

 

I did the 6 rounds of Bio-Chemo things were shrinking well, then went on the maintenance part, did 2 rounds of maintenance then scans showed developed new tumors in the liver. There are multiple new lesions laterally in the liver in segment 8 there are new lesions in segment 5 and 6 as well. Existing tumors were stable or shrinking a little.

Dr. Weber advised I go on the PD-1 Antibody Combo Trial. There will not be any openings until 4 weeks pass, so I am getting worried about waiting so long before I can jump into treatment.

Figured it out

I have had mel for 2 months now and I think I finally  know what to say. It usually goes like this "You have melanoma? Oh, my friend, cousin, uncle (insert relationship here) had that and after a long battle and lots of suffering they DIED)!!!!"  SHEESH! Don't they realize that could be me? What in the world? I usually just stand there feeling hurt and dumbfounded. Now, Im not the kind of gal that takes pleasure in hurting another persons feelings but this thing is really bugging me. Has this been happening to any of you?

Buddy-He was a goo

Buddy, my dear husbacd of 43 years, passed  away today.

He really fought the melanoma battle.  The journey has been a long one, some ups, some downs, but we always thought we would win.

Winning wasn't in the cards this time,  Anyone so desiring can man

 

H

 

 

 

 

Bleeding tumor

My husband just finished his 2nd week of IL-2. Just before his first dose he got high dose radiation on two large tumors on his face and neck. The one on his parotid gland is about the size of a golf ball and it started oozing brownish discharge after week 1 of IL-2. He put a bandage on it to cover it up and ever since he removed the bandage it has been dripping blood. I know his platelets are low due to the treatment but I'm concerned about the bleeding. If it is covered it stops, but as soon as the bandage is removed it flows.

Husband stage IV

Husband taken off trial and off chemo. It worked to reduce all tumors and remove the small lung tumors and all subcutaneous are gone. Still has 2 in the liver, one 3.1cm and one 1.8cm. Dr. said we will wait until January and re-scan because he is no longer a candidate for any trial nor chemo. He said waiting 3 months was within guidelines and since they haven't grown or shrunk in two months he feels safe doing so. I feel like I'm going nuts.

To all who have unknown primaries:

I was just browsing some publications my Onc had done and come across an older one that might be of interest to some of you.  The abstract is scientific but from what I can gather, it says you've got something extra going for you and it should be studied!  A little good news anyway.

http://www.ncbi.nlm.nih.gov/pubmed/18235114

Update on my husband

Four years ago we got the call from the doctor that Mark had Melanoma.  I didn't even know what it was - I sure didn't realize the nastiness of it.  After multiple surgeries and drugs we are now at the place we have been dreading for these past years.

I'm losing the best husband and the kids are losing the best Dad.  He will be missed, yet he lives on in the many people whose lives he's touched.

The end is very near.  He wanted me to post and say how much MPIP meant to him and how he appreciated the support he received here.

Just diagnosed....still in shock

I am a 37 year old married woman, no kids yet but we're trying! Never spent much time in the sun other than swimming during the summer months as a kid at the neighbourhood pool. Don't go to tanning salons. I have dark hair and hazel eyes and I am fair skinned. I smoke and I am a bit overweight. I have always understood the risks of smoking and being overweight....lung cancer....heart disease....diabetes. Anyhow, I was visiting my mother about 3 weeks ago and I happened to ask her for a silly favour....I asked her to scratch my back.

Looking for a Melanoma specialist at UVA Cancer Center?

I live 2 hrs from University of Virginia Medical Center so I'm going to a local oncologists for treatment but I would like to find a melanoma specialist at UVA Cancer Center.  Doe anyone see a Melanoma specialist at UVA?

 

Thanks,

Scot

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