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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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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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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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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Diagnosed with small bowel blockage treated conservatively had terrible cramps. Yesterday inserted a NG tube. Today had small bow eel movement now have C--diff waiting for new antibiotics. They are trying to avoid surgery if not really needed. Been through the wringer and back. Any one else with anything similar

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Replies by: jahendry12

Diagnosed with small bowel blockage treated conservatively had terrible cramps. Yesterday inserted a NG tube. Today had small bow eel movement now have C--diff waiting for new antibiotics. They are trying to avoid surgery if not really needed. Been through the wringer and back. Any one else with anything similar

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Jewel's picture
Replies 4
Last reply 2/26/2014 - 11:10pm
Replies by: Anonymous, Momrn5, jmmm, mwcollins

My husband Ken just had his scans done last Thursday, was told everything was clean except for a

spot on his kidney. 2 years ago the same thing happened and they did a ultrasound, turned out to be

nothing. Ultrasound scheduled for Tuesday. Anxiety is through the roof again. Is there anyone who has just

had it spread to the kidney? We have been in this fight since Nov 2010 and with all my research I don't seem

to recall the kidney being a popular "first" spot to travel but then again we know it goes everywhere. My

husband God love him doesn't seemed concerned at all. I would never show him my fear that why this place

is such a gift!!!

Jewel

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Bubbles's picture
Replies 1
Last reply 2/27/2014 - 6:40pm
Replies by: Mat

Clinical Trial # = NCT01621490
Phase 1 Biomarker study in advanced melanoma
BMS sponsored trial of Nivolumab at 3mg/kg every 2 weeks for 2 years, depending on response, while measuring biomarkers.
Sites actively recruiting include:  Los Angeles, Boston, New York, Portland, Nashville, Houston. 
Requirements:  No brain mets, measurable disease, etc.

Clinical Trial # = NCT01703507
Phase 1 Ipi and Whole brain or SRS in treating melanoma with brain mets
Sites actively recruiting - Thomas Jefferson University,  Philadelphia
Will soon be opening at Ohio State University

Clinical Trial # = NCT01672450
Phase 1 with Intratumoral injection of IL2 and ipi in patients with unresectable Stage III or IV
Requires accessible tumors.
Site = Salt Lake City Utah

Clinical Trial # = NCT01497808
Stratified Phase 1/2 dose escalation trial of SRS (stereotactic body radiotherapy) followed by ipi in metastatic melanoma.
Sites actively recruiting = Philadelphia
Only 4 of 40 slots filled per site.

Obviously each trial and site has their own particulars. Check out the link below for more trials and information!!!! Please....if you are interested in any of them...CALL the location indicated!

Mdlinx.com for more clinical melanoma trials

Celeste

 

chaoticallypreciselifeloveandmelanoma.blogspot.com

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sunshinlilyrose's picture
Replies 3
Last reply 2/28/2014 - 10:57am
Replies by: Anonymous, Bubbles

Hi all, so my question is this... I have my first appt since my diagnoses (my pathology report I previously posted) and I was wondering if anyone has any suggestions on what I should ask or discuss. I recently read a book and it said to insist upon a "punch" test? Any info will be greatly appreciated .... I'm glad to finally be going to appt but terrified of what I may find out.....

I Think; therefor I am

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joy_'s picture
Replies 4
Last reply 3/22/2014 - 10:42pm
Replies by: joy_, JerryfromFauq, Socks, Fen

I don't know if anyone remembers my previous posts about my husband's leptomeningeal disease, but I found searching this forum so beneficial when looking for treatment options that I want to continue to share our experience in case it can help someone else one day.

We are now at MDA and soon he will have an ommaya port placed for IC IL-2.  Hopefully he will tolerate it well and he'll be in the 30% that it helps.

Also they are starting him on dabrafenib.  For other disease in body.  And the thing we are excited about is that they will remove a 2 tumors for an upcoming TILs trial.

They also mentioned that it is unknown whether dabrafenib crosses blood brain barrier but it is thought possibly.  They are going to possibly study my husband's CSF since he will have ommaya and maybe find this out!

This is a tough treatment and scary road but we always remain hopeful! 

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Julie in SoCal's picture
Replies 6
Last reply 3/5/2014 - 8:41am

Hi friends,

Ok I exaggerate for color and and to keep things interesting, but you get my drift.  Up until 10 days ago the only side effect I had from Ipi 1 & 2 was tiredness, but even that wasn't too bad.  Then 10 days ago everything slowly ramped (boiling the frog?) up to wanting to sleep 12 hours and brain exploding headaches.  

So yesterday when I went in for my third Ipi infusion, and rather than getting it, I got a bag of steroids and an brain MRI.  Rock Star Doc figures it's a swollen pituitary glad that's making my head want to explode, as it seems to be a fairly common side effect with ipi.  I should find out more after he gets the results of the MRI, but I see steroids and daily replacement drugs in my future.

On the good news side, I found out that I am BRAF + with a "rare" subtype.  Nice to know.

Blessing!!

Julie

 

 

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Jewel's picture
Replies 1
Last reply 2/27/2014 - 5:56pm
Replies by: Bubbles

Hi,

Husband is stage 3c since 2010. We have been lucky enough to control this disease by surgery, last one in 2011. In 2011 a spot had showed up on his scans (kidney) and we did an ultrasound and found it to be nothing. Fast forward to present and last scans 2/20/14 all clear except spot on kidney. Ultrasound scheduled for Tuesday. Fingers and toes crossed. Can we get that lucky a 2nd time??? Has anyone had this START in the kidney?? I'm usually the voice of reason but for some reason I am feeling pretty shaken. My husband is fine. Need encouragement

Jewel

 

 

 

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timduduit's picture
Replies 11
Last reply 3/3/2014 - 8:57pm

Had a great scan on December 16 that showed that the tumors have disappeared.  I am on a PD1 blocker trial.  Great news!!!

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SarahW's picture
Replies 2
Last reply 2/28/2014 - 4:59pm

I haven't posted much. Sort of afraid to post the bad and the good. Right now we are in a good phase, Melanoma Man(my husband) & I.  MM had 3 brain mets in June 2013 after having been on Vemurafenib and XL 888 since November 2012. He had stereotactic brain radiation July 2013. The first week of October he had 5 new brain mets. More stereotactic brain radiation and switched to dabrafenib. November: a few days in the hospital with pneumonia. January he got approved by insurance to get Mekinist in addition to dabrafenib. He has has two clean brain MRIs since his last radiation in October. He is less tired, has less joint and soft tissue pain and is generally much more cheerful on the dabrafenib & Mekinist combination. All of his non- brain tumors are stable and have been stable since May 2013. More than we hoped for! 

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Anonymous's picture
Anonymous
Replies 5
Last reply 3/4/2014 - 12:12pm
Replies by: dodgedh2, Anonymous, JoshF, kpcollins31

I recently had an ovarian mass removed and turns out it is melanoma (had a stage I in 2006).  My question is that at this point there is no other evidence of metasteses.  Has anyone else ever had this before?  I did find out that I also have papillary thyroid cancer (when it rains, it pours!) so we are moving forward on treatment for that but nothing but watch and wait on the melanoma.  I am feeling very confused since my expectation was that I would be talking melanoma treatment.

 

 

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