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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snow white's picture
Replies 44
Last reply 2/23/2017 - 9:50pm

It is with a very heavy heart that I have to relay this news.  Our dear friend and warrior Paul passed away on Friday 2/17/17.  I have been in touch with his daughter and she asked me to relay this news.  I am so very sad about this.  He gave me and my family so much hope, he was fighting so hard just to get back to LA to start the trial.  I had been keeping in touch with him via text after I met him in person at The Angeles Clinic. Such a great guy and will surely be missed, especially him humor!  His daughter has asked me to let all know that his services will be on Saturday at Pine Lake covenant church in Sammamish.  If you need more details I am happy to text her.  I know his family was a great support to him and will miss him dearly.  I will miss his posts on here so much.

xo Jen

Jennifer-- Dad has stage IV Mel. No primary. Treatment: Gamma Knife,15 brain mets, Craniotomy to remove 3 large tumors in brain. Receiving treatment @The Angeles Clinic

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debwray's picture
Replies 15
Last reply 2/23/2017 - 7:28pm

Hi,

Have had 3 doses of ipi nivo over 15 weeks, delays due raised AST ALT so have had one 6 week drug hol and dose 4 should have been yesterday, but back on 50mg pred as numbers raised again in spite of 10mg pred daily after dose 3.

12 week scan showed liver progression..but that would be a compare to reference scan 5 weeks before treatment start and after 2 doses plus 6 week drug holiday BRAF wild type and in the uk.

Mood music from docs is that they think true progression rather than psuedo progression, and took a blood to test if eligible for immunocore trial https://clinicaltrials.gov/ct2/show/NCT02535078?term=immunocore&rank=3

Anyone out there with experience of "late " response to combo with diffuse liver mets ?

Feeling a bit punch drunk as the bad news keeps on coming- anyone been transitioned to nivo solo with grade 2 liver probs with suspected progression ?

Any experience / info good or bad welcome. Was sort of hopeful for a response with mild vitiligo and with  some superficial skin lesions fading away. Back in the waiting game now as I think next scan will be used to determine next steps

The white knuckle ride continues......

Wishing you all well

Deb

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Dreaf01's picture
Replies 5
Last reply 2/23/2017 - 5:55pm

I pray for everyone on here everyday. I need some opinions please. I had my wle and 2 nodes removed from my groin on 12/29. The nodes were negative (thank God).Right after surgery a golf ball hard lump developed right next to the groin incision and gradually started decreasing. I had an allergic reaction to something (unknown) last weekend, as a result I was put on Prednisone. The prednisone for the most part made the lump dissolve or decrease quite a bit. Im not sure if the lump was a seroma or some kind of post op issue, but my surgeon saw it at my post op apt and didnt seem concerned. Now all I feel is a small hard lump that tends to decrease a little when massaged. It is not painful. Im just concerned because Im not sure if its that same post op lump or a lymph node as it has been almost 2 months since surgery. Has anyone had anything similar? I have an appointment with the surgeon next week, but a little nervous. Thanks!

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Dear MPIP Community:

FDA's Oncologic Drugs Advisory Committee (ODAC) will meet very soon to discuss an investigational new melanoma drug. This meeting will include an opportunity for NRAS mutant patients (and caregivers of those patients) to speak to the committee about the importance of new treatment options in metastatic melanoma. The FDA also allows letters to be written. We encourage you to get involved the best way you can.

If either of these opportunities would be of interest to you, please email me directly at education@melanoma.org. Once the FDA provides a date for the meeting, we'll know more details on both the meeting and the letter writing opportunity, so stay tuned.

Thank you,

Shelby - MRF

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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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