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.

Scanxiety

I just had my pet scan today after 5 infusions of Keytruda. Should hear within the next 24 hours where I stand regarding the efficacy of the treatment. Anxious but hopefuly!!!!

Failed ipi nivo- grade 4 liver enzymes- in uk-suggestions for what next ?

Hi,

Had three doses of ipi nivo but late Jan scan was only after 2 doses due to side effects.

Jan scan showed progression from liver only to skull, spine, pelvis, lung and various lymph nodes.

Have had radiotherapy following urgent mri to spine but no further treatment since liver labs spiked when dose 4 was due. Amwaiting for further pelvic radiotherapy.

Converstions with oncology team now seem to focus on dealing with pain.

Keytruda side effects?

Diagnosed with IIIc Melanoma in November of 2015. 

 

Following several surgeries, the first treatment plan was Yervoy.  This wound up being scrapped as the first infusion came with a little bonus - an eight week bout of colitis that would knock my socks off multiple times each day.

 

Plan B was T-vec.  Received injections for three months with minimal side effects.  However, my first set of full scans showed that this treatment wasn't really accomplishing much - other than pissing the cancer off as it continued to grow and spread.

 

Insurance woes

So found out Shane's insurance denied yervoy and we expect them to deny the keytruda as well. My insurance doesn't cover keytruda and still pending a decision on yervoy. Neither drug is funded in Ontario so it's not looking good for switching to immunotherapy. I guess he will have to stay on the braf and mek inhibitors even though he's only had a mixed response with progression to the combo.

Janis

Itchi eyes?

Really hoping I can find help here.

My mom is diagnosed with Stage 1B, melanoma. Miotic rate 1mm. Breslow - 1 mm. Her primary tumor is on her face, near her right eyebrow /eye. She had a wide excision to remove it, then a biopsy on it. Biopsy came back positive and doctors said there is bit of left over tissue that needs to be removed. She is scheduled for another surgery next week. Her first surgery and the biopsy was about 2-3 weeks ago. 

Headaches & dizziness?

I have been recently diagnosed with melanoma in my lymph node in my groin.  I have had a PET scan and brain MRI that have both been clear.   I am not any meds related to the melanoma, but I was wondering if anyone else has experienced any symptoms like this related to the melanoma?  Or perhaps it's just anxiety.  

just a quick update

Hi All- just wanted to update on Dad.  He has now completed his 3rd dose of IPI.  He will receive his last dose the middle of April. I received an email from his doc and she said they will rescan after his last dose and then decide where to go from there, most likely Keytruda.  So far for side effects he is very fatigued although he continues on his daily rountine, working in the yard, grocery shopping etc.  His sleep has been up and down, one night 10 hours the next 4-5.  We have also noticed that he is very grouchy, doesn't want to be bothered.

GSK2141795 working but not manufactured by Novartis anymore

I am a Phase I clinical trial participant with a BRAF V600K mutation at the University of Michigan involving a combination trial between Dabrafineb, Trametineb, and GSK2141795.  I am one of four out of eleven patients whose metastatic melanoma has stabilized at U of M during this trial.  GSK2141795 is owned by Novartis, but was manufactured by GlaxoSmithKline.  

Novartis refuses to manufacture any more GSK2141795 and we run out of meds on April 30.  

Waiting for next steps

I am waiting anxiously to hear from NCI to see if I am going to get into TIL trials. In the meantime, Abraxene has kept tumors from growing but I feel like it's bringing me down physically. I also made an appointment at Sloan Kettering in April just to see what they have to offer. Anyone seen Dr Shoushtari? I have been amazed at how smoothly things have gone with both places. Thank the Lord! I am praying and waiting to see what is my next step. It is a little scary, but I am excited to get this behind me. It's helpful hearing from those who have paved the way through TIL.

pigmentation changes around scar

Hello all. I come here for support for multiple people I know that have been diagnosed with MM. I pray for all of you daily. 

my Hx: 2009 Spitz nevus benign and removed completely and then some. 

Then ive convinced myself (after multiple people have been diagnosed around me) that I'm going to get or already have it. Because I had a few blistering sunburns, I used the tanning bed intermittently in college and have lots of little moles--haven't been out in the sun but twice since 2009. 

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