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.

Melanoma Recurrence near Original Mole?

Hello everyone, I am new to the MRF Forum, but thought it beneficial to be more proactive regarding my past melanoma, even though I have been clear for five years. I was first diagnosed with melanoma stage 1 in 2013 and had a wide excision of the lesion on my upper left arm. My margina came back clear the first time around. Over the last several years and with many other moles removed, I have been seeing my original diagnosing dermatiologist twice a year for mole checks.

Do Nivo side effects continue after infusions stop?

Just finished 4th course (8th infusion) and side effects are significantly reducing my quality of life.  They include severe dry mouth, muscle pain, muscle weakness, joint pain, general malaise, chills.  Now my most recent labs show elevated liver enzymes, all of which I will discuss with my onc next week.  Since I am NED, and the Nivo is adjuvant therapy, it is tempting to discontinue the infusions.  If I were 100% certain that these side effects would disappear after the 16 more infusions, I could suffer through it.

Has anyone here NOT gotten a SLNB for stage 1?

I only ask because, everywhere I look, it says that the biopsy has little to do with overall longevity. So, has anyone just commenced with the wide excision, and then the follow-up care (i.e., lymph node palpation, skin checks, etc every 3 months). Just wondering. Thanks!

Jen

how many nivo/ipi treatments have you had and how do you feel

I have had 5 combo doses and 27 nivo maintanance doses and would like to know how you feel if you have had around the same number. I have severe fatigue, salavi gland issues that come and go after each dose, joint soreness, still have the rash but no itching or burning, still on thyriod meds and have to take prescription potassium supplements and vitiligo that continues to slowly spread. My last 2 scans have been NED and my dr wants to continue treatment for 9 more months.which will make treatment total 2 years and 3 months.

Anyone have experience with the new DecisionDx test?

Hello Everyone,

My Doctor suggested this DecisionDx test to see how likely my melanoma is to return.  Has anybody had this test done?  What is the cost? Does Insurance cover it?  

Thanks for any comments.

Terry

Good News and Bad News

Hi,

I haven't been on here for about 6 months or so. However, I had melanoma on my left leg which spread to one lymph node, and terrible problems with seromas after surgery. On Dec 9th was my one year mark and the PET/ct scan came back clear. Yeah, now for follow ups.

Unfortunately, I have just been diagnosed with invasive breast cancer today and so will be dealing with that for some time. 

I haven't read recent posts but I wish everyone well. 

 

Father just diagnosed

My 85-year-old father was just diagnosed with melanoma after having a very large mass (6cm+) removed from left armpit 3 weeks ago.  We are unsure of the primary.  He also has a large mass in the lower lobe of his right lung which has not been biopsied but is suspected to be melanoma.  In March he had lymph nodes biopsied in the left armpit but they were erroneously diagnosed as squamous cell.  In 2016 he had squamous cell of the right salivary gland and the gland was removed.  He attempted chemo for the squamous cell but was unable to withstand more than the one infusion.  He is not attempt

Help. Not qualified for Ipi/Nivo trial

I was turned down for Ipi/Nivo trial here in Ontario because the margins from my head/neck WLE were positve. Onc wants me to start radiation and then Tafinlar/Mekinist.

I am looking for any advice and experience that anyone with head/neck has had with this combination.

My head has not even healed yet and all this is happening fast.

Thanks to anyone who may answer.  I am feeling a quite a loss not getting into trial.

 

Delay treatment?

My husband was dx in late August 2017 (craniotomy to remove largest of 13 brain mets - quite a surprise!) He has been on Taf/Mek since September, and has almost no side effects, and has been having mixed results - many tumors have decreased in size (lungs, liver, lymph nodes and some in brain), but others have stayed the same (brain & femur), and "some" new ones have popped up in his brain (small still).

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