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.

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Bmine102793's picture
Replies 4
Last reply 2/23/2017 - 4:58pm
Replies by: Hukill, Cathy M, Anonymous

Fiance has stage 3A melanoma and will start yervoy in april. Once treatment start he will use short term disability through work on the paper work it states that he can only work 40 hrs a week with 40% taken from each check so financially we are screwed. Is there any other help out there? Im unable to work due to my daughter having an immune deficiency so we're at a loss any enough would be appreciated

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Cathy M's picture
Replies 23
Last reply 2/23/2017 - 4:45pm

John Moore       9/12/1960 - 2/4/2017

It is with a heavy (and sometimes angry) heart that I share my husband's passing on the board. After 3+ years of battling Stage IV, his fight is over. He held on to his fighting spirit to the very end. He died with me holding his hand, playing his Eagles World Tour DVD and with me telling him it was ok to go, I would be fine, and how I dearly loved him and the time we had been able to spend together. 

Melanoma is a horrible disease.  I watched it break down his body but never his spirit. I watched it over 3+ years take from me my lifetime companion little by little. But what it can never take from me are my memories. Mountain biking, ATV racing, Jeep exploring, walking our Great Dane, moving cross country because it was my dream to "live in the west".

When diagnosed Stage IV, his goal became to raise awareness. He participated in news interviews. I made awareness packets every year and distributed them at the cancer center where I worked and with friends and neighbors. He was interviewed for a documentary about genomic sequencing that was made into a DVD by the students at Dixie State Univeristy in St. George, Utah.

So...I will continue his fight. I will continue to participate in 5K's. I will continue with my information packets. I will volunteer for skin cancer checks at the dermatologist's office.  Melanoma may have taken the love of my life physically from me but it cannot take his fighting spirit and our determination to educate others about it's silent deadliness. 

 

Cathy

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Carybaum's picture
Replies 4
Last reply 2/23/2017 - 4:45pm

Hello, fellow warriors. I am an American living in Hong Kong. I was diagnosed Stage IV in June, 2016 and have been on Nivo since July, 2016. It looks like we'll be required to move back to the US due to my job loss here. Is there anyone participating in the ACA Individual Marketplace insurance out there that is being treated with immunotherapy? What difficulties in coverage have you experienced? So far it's a bit of a nightmare trying to match network providers with plans on the Marketplace website. Telephone calls with Marketplace representatives have proven fruitless. Any info would be greatly appreciated. Keep fighting!

Regards,

Cary

 

 


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My husband has stage 4 melanoma with multiple lesions in  the head.

He had craniotomy in October, Gamma Knife treatment in December and was on Mek/Taff combo for 3 month.

We had to discontinue the combo because he developed very high fever and chills

started on Keytruda last week.

the MRI in December showed good progress - most lesions decreased in size.

but the second MRI in February showed  3 new lesions, so waiting for the next Gamma Knife procedure.

just a couple days ago he started feeling some kind of spasms in the face , back of head and radiating to the neck area.

the spasms are short in duration - less than 1 min. - and do not cause any changes in facial expression.

does anybody experienced this kind of spasms?

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Shaneswife's picture
Replies 5
Last reply 2/23/2017 - 2:42pm

Well we got Shane'seen results today and it was very much a big old mixed bag of news.

Lungs: almost a complete cr. 1 lesion 3mm on right lobe is all that's left of the 15 between both lungs.

Liver: still innumerable tumors however the biggest 3 have shrunk each by 25%.

Brain: not great news here. Progression noted on many of the bigger tumors. Still has innumerable tumors even after wbrt and 6 weeks of braf/mek.

New metastases found in his vertebrae at t7, t8, and l4.

So he's progressing in brain and variable response in the body.

Doctor has no idea what to do next so sending us to Princess Margaret Hospital to a melanoma specialist. Hoping for an appointment next week. For now maintaining the braf/mek and dex and we go back to waiting again.

Janis

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Anonymous's picture
Replies 4
Last reply 2/23/2017 - 12:52pm

I've been on taf/Mek for 17 months with amazing results until this last month I had 4 new brain mets. It seems to be working in my body still but not my brain. I also just started ipi/nivo combo and my doctor wants me to continue taking the BRAF meds for at least another month. I'm a little nervous about toxicity with all of this in my system. Does anyone have any experience with these taken together? Or know of any articles or studies combining all 4? Thanks for the help!

 

sara 

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Get real hugs and encouragement from thousands of other melanoma patients, caregivers and their loved ones.  Come April 23rd  to  www.safefromthesun.org

 

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BarbaraF's picture
Replies 1
Last reply 2/22/2017 - 10:21pm
Replies by: jennunicorn

Patient is Stage III C with melanomas on the face, two recurrencies, first involved a skin graft from thigh. Second was within a month and near original site.

We are in the process of choosing therapy - clinical trial or oncologist. Meanwhile two suspicious bumps have appeared --  one that does not break the skin near the original area and another on the leg. Patient wants to wait until the next regular appointment - 2 or 3 weeks from now. I think he ought to go PRONTO. Opinion? Monthly? 

 

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BarbaraF's picture
Replies 9
Last reply 2/22/2017 - 9:29pm
Replies by: BarbaraF, stevenallenschwartz, Anonymous, debwray

I fear that, due to lack of information, this patient who is diagnosed at Stage III is really Stage IV and could get better meds (MK-3475 Pembro) right away. Is it true that Pembro can be prescribed for Stage IV? 

background: After surviving TCC cancer on the kidney 12 years ago, and, after extensive chemo emerging with No Evidence of Disease, he was diagnosed in 2011 with Barrett's esophagus, a pre-cancerous condition. His oncologist told him to FOR SURE continue with the endoscopy checkups. He has the symptoms of Barrett's disease.  

In October 2016 he had surgery to remove invasive malignant melanoma and was Stage IIC. PET scans were clear. Three months later, Feb 1 2017, had another resection for melanomas that returned quickly, and now he is Stage IIIC.

He wants to get MK-3475 (Pembro) but Stage III can't get it unless he is in a randomized clinical trial (S1404) which might give him IPI instead. Is it true that Pembro can be prescribed for Stage 4? Wouldn't it be better to get a Stage 4 diagnosis NOW and get on the Pembro NOW rather than wait to be put on the trial, be randomized to IPI , and discover that because IPI didn't work and he is now Stage 4? 

 

 

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stevenallenschwartz's picture
Replies 4
Last reply 2/22/2017 - 5:49pm

Had my 4th infusion today. Almost postponed due to higher liver enzymes than normal. So far no reaction. Scheduled for my 5th infusion in 3 weeks than the petscan to determine the efficacy. Taming my fear by staying active.

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JoshF's picture
Replies 22
Last reply 2/22/2017 - 5:18pm

Hi Everyone! It's been awhile and I've been staying in touch with Paul but figured it's time to update. So I did TIL beginning in February. Ended up with 14 billion cells which the PI for trial said was reasonable. I guess the trick to TIL is having the "right mix" of cells. My TIL cells had good viability so hopefully they can get some work done. I definitely need it. I'm scared, anxious...all the above but doing best to live life. I'm not thrilled about having to go back to Houston every 3 weeks for keytruda. Since I failed Nivo, didn't think it was good option but it's part of trial and doc says new immune system can provide different results. I'm praying that's the case. Outside of that I'm trying to get strength back. TIL does take it out of you for sure.

On another note, I lost a friend while in hospital. He was doing bio-chemo and his body gave out. It's hard part about this disease, you meet people and then they're suddenly gone. I'm heartbroken....he would've been 40 yesterday. I guess it's why I've been staying away from this forum. Too much suffering. Not to mention I haven't heard from Paul in 2 days. 

Anyway, I'm hopeful and not ready to leave my kids so I'll fight on but I'm not going to lie, I'm wiped out. Cmon TCELLS!!!!

Josh

Let's work for better treatments....for a cure!!!!

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J.bun's picture
Replies 12
Last reply 2/22/2017 - 5:10pm

I’ve been eager for my first post in this community, and felt like I needed to find the “right” way for myself.  Since my initial IB diagnosis in April 2015, I’ve been an avid reader/lurker on this board.  Like so many of the “early stagers,” I felt shocked – then relief it was only 1B – and concern for the future recurrence.  Unfortunately, these fears were recognized when I noticed a lump in my groin at the site of my sentinel node biopsy this past Thanksgiving.  Within one week I had an excision and PET CT scan - 2 nodes and skin involved.  I go to the Inova Melanoma specialty clinic in Northern Virginia - right outside DC.

Now, less than 100 days since this diagnosis, I have been on 3 treatments (6 total drugs - Ipi/Nivo; Zelboraf/Cotellic; Tafinlar/Mekinist); prednisone; and encountered an 8-night hospital stay (severe allergic reaction to Zelboraf - known as DRESS- extremely rare and potentially fatal).  Most importantly, my PET CT scan this week is showing that the drugs are working! 

I am writing all this to thank all you contributors/active posters - and hope to share my experiences and support each other too.  I wouldn't have been able to understand everything I went through and the questions to ask had it not  been for this board.   

I am a 33 years old, I am not writing this to raise fears - but I believe information can be empowering, and facing reality is far more important than to "keep your head in the sand."  We all want the same thing, and share the same goals.

- J.

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Melodygrace's picture
Replies 2
Last reply 2/21/2017 - 8:08pm

Hi all,

Has anyone here ever had a melanoma that was first misdiagnosed as a dysplastic nevus?  I had a dysplastic nevus removed last year.  It had to be sent in to UCSF for a second opinion because the first results were inconslusive.  This, combined with the fact that a dysplastic nevus looks similar to melanoma, has me wondering if it actually could misdiagnosed.  

I know someone who had a mole removed six years ago, results came back as a spitz nevus.  They got a surgical excision and then got on with their life.  However, six years later, this person discovered a lump under their arm.  It turned out the spitz nevus diagnosis was wrong and it had been melanoma the whole time.  

This made we wonder if this happens with dysplastic nevus moles as well. I have a family history of melanoma, so I am just a little concerned.  I did have the mole surgically excised when we found out it was dysplastic. 

Just curious to hear if anyone has any personal experience with this.

Thank you!

 

 

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Replies by: J.bun, jennunicorn, Mark_DC

Hi,

Can anyone explain the Ipi infusion process and length of time for the infusion?

Does Ipi get infused through 1 catheter site or multiple?

Does the infusion take a few minutes or more than an hour, or multiple hours?

Anything else about the infusion which you recommend(e.g. Bringing music and headphones, bringing a book, eating food beforehand or fasting beforehand)?

 

thank you

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Dreaf01's picture
Replies 7
Last reply 2/21/2017 - 4:49pm
Replies by: Anonymous, cancersnewnormal, zfishberg, Nemesis, Janner

Just want to know why scans are not recommended for stage 1b/2A. My anxiety is getting the best of me and am wondering if I should be requesting them. I had stage 1b melanoma removed from my right upper thigh. Negative margins and negative nodes.

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