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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Hi,

I'm one ofe the last ones still on BRIM 3 in Sweden. The effect of Vemurafenib does not last forever and I am thinking about the next step. Does any of you have experience to share about PV-10, PD1, Ipi, PI3K plus MEK, TIL, OncoVex or something else?

Thank you!

/Marie

##Fuck Cancer!##

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Hi,

I'm one ofe the last ones still on BRIM 3 in Sweden. The effect of Vemurafenib does not last forever and I am thinking about the next step. Does any of you have experience to share about PV-10, PD1, Ipi, PI3K plus MEK, TIL, OncoVex or something else?

Thank you!

/Marie

##Fuck Cancer!##

Login or register to post replies.

Hi,

I'm one ofe the last ones still on BRIM 3 in Sweden. The effect of Vemurafenib does not last forever and I am thinking about the next step. Does any of you have experience to share about PV-10, PD1, Ipi, PI3K plus MEK, TIL, OncoVex or something else?

Thank you!

/Marie

##Fuck Cancer!##

Login or register to post replies.

KellieSue's picture
Replies 4
Last reply 2/2/2012 - 1:29am

I'm starting cycle 2 of clinical trial,
I can't seem to paste the trial. It is under the U of Iowa clinical trial cancer page.
Title 07-08-01-50; Phase I/II Study Epigenetic Modification of Chemosensitivity and Apoptosis in Metastatic Melanoma: Treatment of a Resistant Disease Using Decitabine, Temozolomide and Panobinostat

I start getting 2 shots of Decitabine week one and week two M,W, F. I got to the Clinical cancer center for the shots.
Week 2 I also takeTemodar day 2 thru day 5 in the evening at home.
And I also take Panobinostat at home every 4th for 8 days(i think)
I am on week 2 of cycle 2 now.

I am doing good except for am still dealing with some edema from the brain tumor. I'm being weaned from steroids. I have a follow up MRI on Feb. 7. We're all hoping that the tumor has shrunk( from radiation) and there are no new tumors and the edema has resolved. I'm worried about being on the steroida for so long and am hoping the MRI is an improvement from last one.
The steroids are hard since I don't sleep well so I'm hoping theres good news next week.

My right side still continues to improve from the stroke. I keep getting more feeling on that side and it makes me feel that I can keep improving. I use a cane now and walk as much as and still practice all mt OT and PT.

I'm really trying to be positive about the trial. I feel that it could do some good things.

I guess thats it for now. Thanks for reading and caring.

Kellie( from Iowa)

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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aldakota22's picture
Replies 4
Last reply 2/11/2012 - 3:06am

  Been on Zelboraf since 9/12/2011.Are there any patients with a long history taking the drug out there?Bee  working as a miracle drug for me with  just nuicance side effects. What side effects have others had? Thanks for input

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See Melanomaforum.org for further info

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heg50heg's picture
Replies 5
Last reply 2/10/2012 - 1:52pm

Hello, I was wondering if any one could tell me what kind of symtons one may have when melanoma returns or spreads. I am currently stage 3 after having a primary  rmoved from right arm in Nov. 2010, wide excision surgury and 36 nodes removed from armpit. Lately I have been having slight headaches and for the last 5 days or so some stomach dicomfort,especially after eating something. Fatige and feeling tired alot to as I can sleep for 8 to 10 hours and wake up feeling like I had just gone to bed. See my oncologist lat in feb. and almost feel I should see him earlier. Ct scan of chest and abdomen looked good just over 3 months ago.

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lna426's picture
Replies 11
Last reply 2/3/2012 - 1:31am

Hi all - 

In between my first and second treatments I developed really bad colitis (intestinal inflammation that makes me look like I'm pregnant). Four weeks after my last infusion and I'm still the size of a house!

I'm wondering if anyone treated with Yervoy had a similar experience, and, if so, how long it lasted. I know every person reacts to the drug differently, but any insight would help.

Thanks!

I never asked "why me?"...I asked "why not me?". And my answer? Because I knew I could.

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sedona's picture
Replies 4
Last reply 1/31/2012 - 12:02pm
Replies by: sedona, lhaley, Webbie73

Well here goes, I hope I do this right.

I had a mole removed  on my shoulder just over 3 years ago. The diagnosis was IIa. Am I cured or do I have cancer? 

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speckles's picture
Replies 13
Last reply 2/1/2012 - 9:56pm

I was diagnosed w/level 3 malignant spreading melanoma in 2009. I was told after the removal of tumor &lymph nodes, stadge lla it seems that the drs aren' t to concerned about follow up! Should I request pet scan or lab to see if anything is going on that I can't see? why do alot of people act like melanoma is no big deal?

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Replies by: cltml, MeNDave

Hi,

I am a Zelboraf/Braf dropout due to scans showing growth,  and now moving to Ippi.  I am waiting for insurance to approve ippi and I will hopefully start next week. 

One of the areas of growth for me is the lower part of my left lung which is starting to close up.  My oncologist mentioned while I waited for ippi to work (fingers crossed  it does work)  I could have laser or stint done to open airway making it easier to breath.    I wondered if anyone had either laser or stint done and if so did they have any problems with it? 

Thank you

laurie from maine

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Replies by: debbieVA, dian in spokane, Janner, Anonymous

I had 10 moles removed from my body, including 2 atypical.  No personal or family history of melanoma and less than 10 moles left on my body.  But , this is embarassing part, i have 1mm small brown spot on a skin of my penile shaft.  Its flat, has sharp clear margins, one color, but sometimes its very hard to tell whether it has perfect symmetry due to obvious skin elasticity.  I never seen it really get change, but my quesiton is, is it possible to get melanomas down there (i'm 32 years old)?  Or dysplastic nevi?

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Lisa13's picture
Replies 24
Last reply 2/4/2012 - 11:08pm

Today, I had my brain MRI appointment to see the gamma knife procedures I had 2 months ago. 1 is gone and the other one is shrinking - so it's good news.  They found 2 small mets today which devastated me, so I have an appointment on Monday to get gamma knife done again. They really want to send me on WBR, but after reading the webinar on Melanoma International, I'm sticking with their opinions. I had 2 and they're gone, so this other 2 will hopefuly go away as well. Every 8 weeks, I'll see what comes up and may be lucky to only have 1-2 more arrive for awhile.  You just don't know. 

I'll also be starting ipi again as it shrunk 50% and even some disappeared and now all of a sudden they have marginal growth. My lymphocytes are back up to 1900, so if it can do the job shrinking again, it could also work it's magic inside my brain.

I'm terrified, but I have to believe that sometmes brain mets don't come all the time. I've met numerous people (mostly woman) who had 2-3 and have been hear for 3 and some 5 years.

Lisa

Many impossible things have been accomplished for those who refuse to quit

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chermes55's picture
Replies 2
Last reply 1/29/2012 - 12:58am
Replies by: LynnLuc, washoegal

Hi everyone. This is my first post. I was diagnosed stage 3c in march of 2011 with 31/35 nodes in my right neck area positive. I underwent a radical neck dissection. 6wks of radiation to the head and neck and then began my interferon infusion. I knew it would be a tough year but had no idea how bad this drug would be. I started the interferon/lexapro in august and by November my girlfriend of three yrs could not take the mood swings/lack of desire any longer. She left me and have not been able to reconcile since. A week before Christmas I got the news that there were two new metastasis on my liver seen in my early Dec. Pet scan. My oncologist decided at that time to take me off the interferon. She then prescribed me zelboraf. Before my insurance would approve it I was offered the chance to join a trial at moffitt cancer center in Tampa with Dr Jeffrey weber. The trial is for gsk's alternative to zelboraf (braf inhibitor gsk2118436) in combo with a mek inhibitor gsk2110212. I started my meds on 1/25/12 and on my fourth day. The only problem I have had so far is dealing with the fasting twice a day for 4 hrs each time. I decided to take my pills at 10:30 so from 8:30 to 12:30 I cannot eat. Slowly deciding that this might be the best time most days. I will try to keep my side effects and result updated. This drug combo has been having great results compared to zelboraf alone including decreased side effects. We will see in the weeks and months following.

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chermes55's picture
Replies 12
Last reply 1/31/2012 - 3:30am

Hi everyone. This is my first post. I was diagnosed stage 3c in march of 2011 with 31/35 nodes in my right neck area positive. I underwent a radical neck dissection. 6wks of radiation to the head and neck and then began my interferon infusion. I knew it would be a tough year but had no idea how bad this drug would be. I started the interferon/lexapro in august and by November my girlfriend of three yrs could not take the mood swings/lack of desire any longer. She left me and have not been able to reconcile since. A week before Christmas I got the news that there were two new metastasis on my liver seen in my early Dec. Pet scan. My oncologist decided at that time to take me off the interferon. She then prescribed me zelboraf. Before my insurance would approve it I was offered the chance to join a trial at moffitt cancer center in Tampa with Dr Jeffrey weber. The trial is for gsk's alternative to zelboraf (braf inhibitor gsk2118436) in combo with a mek inhibitor gsk2110212. I started my meds on 1/25/12 and on my fourth day. The only problem I have had so far is dealing with the fasting twice a day for 4 hrs each time. I decided to take my pills at 10:30 so from 8:30 to 12:30 I cannot eat. Slowly deciding that this might be the best time most days. I will try to keep my side effects and result updated. This drug combo has been having great results compared to zelboraf alone including decreased side effects. We will see in the weeks and months following.

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