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.

Residual Melanoma on Scar Line

Hi everyone! I've been reading through some of the posts and am so grateful for this group. This is my first post on here. 

I have been diagnosed with Stage III(c) melanoma on my scalp. Two of my 7 biopsied lymph nodes tested positive so I had an excision and am on Opdivo and just finished my 7th treatment. 

At my last dermo appointment, she found two tiny spots of melanoma. I had those excised and the surgeon also found another small spot. All of these are on the scar line of the original site and excision. 

Happy Thanksgiving! It's Follow Up Time!!

I hope everyone is preparing for a great turkey day (if you live in the US anyway)! Food, football, and family.

After being out in the elements for our last soccer game of the season two weeks ago I spent most of the next 14 days fighting what would have been a mild cold, except my lungs are so damned compromised these days. I've developed a wheeze when I breathe and now I have an albuterol inhaler as part of my arsenal.

Stable results for a long period

Are there any members here who have been stable for a long period of time? For how long?  Would love to read some encouraging stories.

Got the Results of my First PET

Ok, I got the results of my first PET scan and I’m afraid they are really bad with very high SUV uptake in my lung tumors (none anywhere else though!!!). Have people still had a response on immunotherapy when tumors had a high SUV uptake? I’m about to start the combo and I’m feeling like there is something more I should be doing or pursuing. Should I be pushing to have the nodule with the greatest uptake taken out? Any advice?? I’m getting so anxious...

Here is the part of the path report, I’m worried about: 

Stage 1

Good morning,  

I was wondering has anyone’s stage 1 come back in another area or spread to other organs.  I have multiple nodules in both lungs (haven’t seen specialist to know if malignant or benign yet). But I’m concerned it could’ve spread to my lungs.  Not sure what to think. I’ve read all the stage 1 materials on this sure. But my dermatologist did not test nearby lymph nodes so it makes me more concerned. 

thanks in advance for any responses

DebbieC

Checkin In!!

How ya doin` Ladies & Germs?, im doing ok, a little more "nerve" pains then normal, is it the Nivo, is it my lungs, is it something "brewing" somewhere else? i do have a CT {with & without contrast} for my freakin` "Head", im sure iv told you, im severly "Claustrophobic" and have not done an MRI or PET in some time, Adavans no longer work & my anxiety level has gone way extreme, it played a roll in my backing out of the surgery, i know it did..CT scans are no sweat, a big ass Doughnut, 5 minutes tops & im outta there!

Targeted Therapy Response (Repost)

Hello (I am not sure my previous post went through),

Side Effects After Last Treatment????

Hi All,

I completed my combo Ipi/Nivo treatment at the beginning of Oct. About 2.5 weeks later I started having the same type of gastrointestinal side effects I did when I first started treatment.  I hadnt had issues since going off Ipi 7 months ago.  

My Dr. believes it’s related to treatment so has put me on a MedPack.  I know side effects can develop at any time, or even after treatment, but wondering if anyone has had an experience like this?  Or problems going off immunotherapy.

Thanks!

 

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