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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melfighter's picture
Replies 1
Last reply 2/26/2014 - 2:54pm
Replies by: MattF

My husband was diagnosed with stage 4 about three weeks ago and just started BRAF/MEK combo last Sat. I noticed for the last three days now, his ankles have gotten swollen. The nurse from UCLA, where he is getting his treatment had him tested for blood clots and it came back negative. She could not offer other causes and said it could just be the cancer. 

Anyone have similar experiences? He gets fatigue from WBR and sits on his lazy chair a lot to rest, but he does get up and walk around.

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starletwoman2007's picture
Replies 4
Last reply 2/27/2014 - 8:11pm
Replies by: SarahW, Anonymous, Patina, kylez

Hi 

I was diagnosed with stage 4 mm about a month ago. I was told that the mm was mainly in my liver, stomach and that i had multiple tumours scattered over my brain. Becuase i was tested for braf positive i was put onto vem straight away. I went to the hospital and was told bcause the mm was scattered in my brain that i was unable to have gamma knife treatment, and instead would need whole brain radiation, but they were holding off doing this until it was needed. Therefore, i was wondering whether anyone could give me any positive stories where vem has worked for them and helped with their brain mets. Also are there any surviovurs out there who have not had any surgery to remove mm and that the drugs have worked for them?

Thanks

p.s sorry just feeling really down at the mo and just need to hear positive things

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/28/2014 - 3:03pm
Replies by: Ashley

So, have ipi-related colitis after 3rd infusion.  Within 36 hours of the start of a period of diarrhea not helped by Immodium, I start on Prednisone (now at 100 mg/day) and Endocort, i.e., got on it quickly.  Diarrhea stopped within a day.  However, still having bloody stools (more bright red than dark, but some dark) at each movement.  No abdominal pain other than minor cramping around movements.  Have been on steroids for about 2.5 days.  Should the bleeding have stopped by now?  Of course, I'm in touch with my melanoma specialist and scheduled for a CT scan and colonoscopy in the coming days.  Just curious if anyone has useful experience to share.  Thanks.

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My husband has had an inability to urinate and his abdomen fills with fluid . . . he had a procedure to drain it yesterday but it is almost back to the same uncomfortable level today. Doc says the ipi is not keeping ahead of the aggressive spread of the cancer, and is going to try Temodar, then add the ipi back in. He said the fluid in abdomen is a sign of the effect of cancer spread, not a side effect of the ipi.

I am, like to many others here, in very great fear. Has anyone else had a situation like this, and how was it overcome?   mm

MicheleM

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Swanee's picture
Replies 23
Last reply 2/28/2014 - 9:17am

It was posted on Sunday 2/23 by Frank (Buffcody) that are dear friend and fellow melanoma warrior Amy Willett had lost her battle with melanoma,  but more importantly.....Amy has won her freedom to now live the life she has prepared for.....for all eternity.

Amy lost her father to melanoma February 2010 and then one month later, Amy was diagnosed with Stage 3 melanoma and joined MPIP March 2010.  Since her first post here, Amy has been a beacon of inspiration and hope, a constant visionary of miracles and cures.  Amy's unshakeable faith has guided her without fear and sustained her throughout her journey with melanoma.

Amy has touched so many here with her compassion, empathy and her courage in her own fight and will be dearly missed.  Please join me in ringing a bell wherever you are to symbolize our unity as melanoma warriors to find a cure and honor our friend Amy Willett, who not only fought for herself but for all of us as well!

Rest in Peace Amy!

 

 

 

 

  

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sofistef's picture
Replies 3
Last reply 2/26/2014 - 9:10am
Replies by: Anonymous, Maureen038, Brendan

Hello,

Today I had the 12 weeks scans on this trial, and there is no new disease and the the only lymph node involved is stable. I was hoping for some shrinkage, but I'm cautiously happy with stable!. The doctor is happy with the results, hopefully with the next set of scans we will see some shrinkage. Since the trial is blinded, I don't know what medicine I'm getting, but based on the side effects, I believe I'm only getting Nivo.

 

Dana

 

 

Macke

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Jewel's picture
Replies 8
Last reply 2/26/2014 - 8:22pm

Feeling some scanxiety going on. My husband had his scans on Thursday 2/20/14. We have always waited

a few days figuring if we HAVEN"T heard anything buy now that the scans were ok. We called this morning

and still haven't heard back. Just feeling restless need to vent. When you progressed did they call you right

away?

 

Jewel

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arthurjedi007's picture
Replies 8
Last reply 4/25/2014 - 12:45pm

Just wondering when the Tafinlar/Mekinist side affects are going to start? I'm like day 6 and nothing which is good. But when I was on Zelboraf I already had fevers, rash from head to neck, etc.

Oh and yeah I'm still walking :) It's difficult now with the tumor pressing on the spinal cord but at least I got to a different local hospital. Same place that did radiation last summer in that spot. The radiation oncologist is trying his best to keep me from being paralyzed. I'm quite happy with him. We'll probably start his radiation plan Friday. Either that or I give this med a chance to work. I dunno for sure yet. But at least I'm still walking. hehe. Had to cancel my trips to MSK and Sarah Cannon but I'll get there eventually. Just gotta get this spot stabalized.

 

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Anonymous's picture
Replies 2
Last reply 3/18/2014 - 5:59pm
Replies by: Anonymous, G-Samsa

After anti-PD1 is approved is there anything in clinical trials that look promising? Anything big that is new or are the clinical trials looking at using the drugs in combination with each other?

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eod0514's picture
Replies 4
Last reply 3/6/2014 - 1:05am

Hi

My son Shane is 34 years old and is Stage IV for the last few  years. Recent treatments include Ipi, BRAF inhibotor *(Zelboraf for 13 months) The Zelboraf stopped working in january 2014. He just started the BRAF/MEK combo (Dabrafenib/trametenib) on Feb 8th 2014. His sub-cutaneious tumors appear to be getting larger and the number of them seems to be increasing. 

It has only been 2 weeks but we feel that this treatment is not working for Shane. Does anyone know of any other treatments out there or access to open trials for any of them including PD1, PDL. or any other viable options such as bio-chemos or IL2?

We are trying to determine the best approach at this time so that we can follow the best course going forward. Are there any indicators or markers at this stage that would help get us in the right direction at this late stage?

 

Regards,

 

Eileen O'Donoghue

 

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Anonymous's picture
Replies 3
Last reply 2/25/2014 - 2:45pm

Hi,

Has anyone experiened rigors while they were on Yervoy? If so, did they disappear over time or did you do or take anything to stop them?

Thanks!

 

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Maereard's picture
Replies 4
Last reply 2/25/2014 - 12:41pm
Replies by: Maereard, Janner, BrianP

I always come back here when I'm scared. I was diagnosed with melanoma over a year ago. It was very small. They did wide incision and I was told thete was no need to biopsy the lymph nodes. I was very lucky and all margins came back clear from the incision. I had my regular skin check 2 weeks ago and all clear again:-).....until this past weekend. I found a lump under my arm in the shower. It was about the size of a pea. I sqeezed it:-/...I was hoping it was just a pimple from shaving. Its a few days later and now it is red a very very painful:-( I scheduled an appt with the dermatologist in the morning to have it looked at. Of course now I'm terrified. I am really just posting this to get my fear out.

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LBIO's picture
Replies 1
Last reply 2/24/2014 - 9:56pm
Replies by: BrianP

Hi, I'm Lisa and I work for Lion Biotechnologies (www.lbio.com) and am looking for patients who have participated in clinical trials using TIL treatment to share their testimonials. If you have and would be interested in sharing your story, you can email us at info@lionbio.com

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Michelem's picture
Replies 7
Last reply 2/26/2014 - 11:16am

Husband woke up this am with severe abdominal swelling. Onc says this is caused by the cancer spreading too fast for the ipi to fight. He's thinking of switching us from ipi to Temodar. Says there is no literature on using them together.

We were in ER over the weekend, they did not properly read the labs and did a total misdiagnosis of dehydration.

Things are looking very grim. Thoughts from anyone here? mm

MicheleM

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