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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nickmac56's picture
Replies 7
Last reply 8/4/2011 - 8:16am

My wife and I went in for her MRI brain scan results today, Bad news. She has six new brain mets. So that pretty much rules out any trials of any sort. Or a standard course of IL-2 (the only non-clinical trial drug she could go on - after having already tried Ipi). With active extracranial disease (lungs and who else knows where by now) and very active central nervous system disease, it's all right now about trying to buy time. We meet tomorrow with the radiation oncologist - it's either gamma knife or whole brain radiation. They are spread all over - and we have to assume there are more lurking. We'll see what onc recommends. We are game to do the WBRT - our doc said any dementia side effects would kick in long after she is gone - so it's worth it to try to buy some time. She's already lost her hair from the Cyberknife so that's no big deal. She is definitely bothered by the probable side effects of short term memory deficits, but it beats the alternative. She will continue on the Temodar and may switch to Taxol in a month if it looks like it's not doing anything.

The hardest thing we've had to deal with today is expectations around life expectancy. Since she's suffered some cognitive deficits as a result of her stroke, it's been hard to get her to understand. She gets that she won't get through this; she does want the time to get her final projects done (the letters to the boys when they get married, have kids). But she doesn't want the pressure - which is kind of unavoidable. 

Despite a very sad, emptional and teary day - she is a remarkable woman who is showing tremendous grace under all this stress. She is very loved by a very broad and deep community of friends and family who will support her on this leg of her journey. I just wish there was a different path...

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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Ranisa's picture
Replies 5
Last reply 8/4/2011 - 7:35am

I know that with the lose of Eric she could sure use the extra prayers right now! 

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Becky C.'s picture
Replies 5
Last reply 8/4/2011 - 12:53pm

Hello. I have been reading on this forum for awhile now and there seem to be some very knowledgable people here.  I was diagnosed last month. I had a mole removed from my right foot that came back a superficial spreading melanoma, Breslow depth 1.57, no ulceration, mitosis was high at 18, biopsy showed no vascular or lymphatic invasion, margins were clear. I then had my WLE and SLNB. Surgeon did a graft on my foot which is doing great, two nodes removed, sentinel node had microscopic cancer cells, second node was clear. Naturally, this has been the scariest thing I have ever faced.  I have done lots of reading, probably too much.  I am having rest of nodes taken out next week. My oncologist really expects them to be clear. Also had CT scan, it was clear. One of the fears I have is of cancer cells getting in the bloodstream. My oncologist said that the cells seek out the lymphatics. Everything I have read says the same thing. From what I have read, thicker lesions are the most likely to penetrate the bloodstream. Does anyone have good information about how often this happens. My oncologist also said, when i asked about recurrence, that it does not recur very often. My doctor came very highly recommended, and he has given me a good outlook.  Also, I am concerned about lymphadema. Has anyone had an experience with this in their leg. I would greatly appreciate any feedback.

 

Thanks

BeckyC. 

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EricNJill's picture
Replies 60
Last reply 8/31/2011 - 10:06pm

At 12:12 a.m. Eric is now an angel in heaven.  My heart is broken.  Now that Eric is finally at peace, my battle is just beginning.  Please pray for God to give me strength.  Eric is my hero, my soulmate and now my angel.  I love you forever, Eric.

JillNEric in OH

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I am curious if anybody has participated in these trials at NIH?  Dave could not qualify at this time for the TIL and TBI trial due to the surgery being too risky to harvest the tumor.  If he progresses and there is disease that is resectable, then he could.  These were two other options presented to us if his tumor shows either of these expressions.

Any info would be greatly appreciated!!

Maria

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Julie in SoCal's picture
Replies 1
Last reply 8/2/2011 - 11:10pm
Replies by: mombase

Dear Friends,

I'm just posting to say hey and that I'm now 3 years NED.  There were days I didn't think I'd get this far, but thanks to God's care and good doctors, I'm in mainland Southeast Asia (mostly Thailand & Cambodia) doing dissertation research. Whowuddathunkit!?!

I don't post often but as often as I can I read and try and keep up with you all on this board-- saddened to hear of a warrior's passing and rejoicing with each clear scan.  You all have been a great source of information and realistic encouragement to me!  I'm grateful!

Here's wishing NED to you all!

Blessings

Julie in So Cal

3A, primary on back of hand,

SNB, LND, HD INF, 11 mos  GM-CSF.

Stage 3c: WLE, SNB, LND, HD-INF, GM-CSF, IPI, PEMBRO.

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benp's picture
Replies 24
Last reply 9/23/2011 - 9:41am

Hi, 

I was wondering if anyone knows if it is possible for foreigners (in my case, Australian), to take part in clinical trials held in the US? Has anybody here done this before? 

Thanks, 

Ben.

(Stage IV)

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WalterA's picture
Replies 5
Last reply 8/3/2011 - 2:48pm

In March I had RFA treatment for liver mets. I had a follow-up scan yesterday, and it was really good. Nothing but scar tissue showed up, and my oncologist was pleased.

"Thus I am!" -- Guido in "The Ring and The Book "One day is worth two tomorrows." -- Benjamin Franklin "If it ain't baseball, who cares?" -- Me

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AlanM's picture
Replies 8
Last reply 8/22/2011 - 10:39pm

I had a brain MRI in April to check for issues that might cause the ear-ringing I am experiencing. They found no inner ear issues but did find one 7mm met on the left frontal lobe. This took from me from 3C(diagnosed June 2010) to stage 4. Subsequent PET/CT scans have shown no other mets. In May I had the brain met zapped with a Gamma knife and that appears now to be stable. My oncologist is recommending Yervoy as a way to finish off the one met that I have and to put the brakes on progression. Has anyone here used Yervoy in a similar situation?  Given the possibile side-effects of Yervoy, I am weighing the options of only using Yervoy IF something else presents vs using it now and taking the risk of an immune system run amok.... Any thoughts?

Alan

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AlanM's picture
Replies 9
Last reply 8/2/2011 - 8:33pm

I had a brain MRI in April to check for issues that might cause the ear-ringing I am experiencing. They found no inner ear issues but did find one 7mm met on the left frontal lobe. This took from me from 3C(diagnosed June 2010) to stage 4. Subsequent PET/CT scans have shown no other mets. In May I had the brain met zapped with a Gamma knife and that appears now to be stable. My oncologist is recommending Yervoy as a way to finish off the one met that I have and to put the brakes on progression. Has anyone here used Yervoy in a similar situation?  Given the possibile side-effects of Yervoy, I am weighing the options of only using Yervoy IF something else presents vs using it now and taking the risk of an immune system run amok.... Any thoughts?

Alan

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StevenK's picture
Replies 3
Last reply 8/2/2011 - 9:12pm
Replies by: Jydnew, StevenK, Janner

My new dermatologist had my path slides reread by "his" guy, whom he trusts and there were a couple of changes. My depth grew from .60 to .66 and my mitotic rate got more specific from >1 to 4. The mitotic rate really scares me and makes it more likely that I'm going to go forward with an SND. I meet with my new surgical onc next week. It's been such a difficult and stressful road trying to get an SNB since my first surgical onc stopped returning my calls and I've had to find a new one. Probably, since two months have passed already since my WLE, it makes sense to get a PET scan first. If cancer is in my nodes, it's had 2 months to grow. That will be one of the questions I ask my new surgeon.

I guess the high mitotic rate means I'm more likely to experience a recurrance. Do those happen on the skin mainly or is it likely to be internal? It was nodular melanoma, the new path detrermined, so I was very lucky to catch it when it was still so shallow. I wish I had been given the SNB choice back when I had my WLE. I feel nervous and unsettled. Every few hours I check my lymph nodes, but so far they remain normal. Can't wait until I'm finally past all the initial staging stuff.

Steve

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JerryfromFauq's picture
Replies 8
Last reply 8/2/2011 - 3:46pm
Replies by: JerryfromFauq, Anonymous, Teodora, Becky, MichaelFL

Many times recipes have been exchanged on this board.  Many pople, as well as Rox has provided many tasty ones.  Please folks, let's change the subject to ones that many of us are more comfortable with. 

I'm me, not a statistic. Praying to not be one for years yet.

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bball's picture
Replies 3
Last reply 8/1/2011 - 9:42pm

what is normal protocal for ct scans in first year 2a. also having pains in my upper abdoman but had clear ct scan 5mos ago . any input?

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Nebr78's picture
Replies 7
Last reply 8/2/2011 - 8:19am

Now that I have stopped anymore chemo and am ready for hospice when I need it, it seems as if  my Cancer Dr. don't care much about my condition at all.  Of course he don't make as much money this way and not administrating chemo.  I apologize for being a bit bitter, but I am afraid all this cancer treatment, etc. is done just for the money.  Research sure isn't coming up with  anything.  I am going to donate my body to a Medical School so lets hope they can learn something from it. Heart Disease for over 40 yrs. and Melanome for 7-8 should provide something interesting.

 

 

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Ray from NYC's picture
Replies 6
Last reply 8/2/2011 - 10:10am

Hi all,

I have a close family member who is Stage IV melanoma, and I have some questions about Yervoy and its side effects.  Any feedback would be appreciated.  Thank you very much!

1.  Is it good to get side effects, particularly diarrhea?  And is it better to get them quickly?  I understand the side effects can be difficult to deal with and even dangerous, but do they mean that there is a better chance the ipi is working?  If so, could you point me to info/data/studies/reports on this? 

2.  If you get diarrhea and then are given a corticosteroid (prednisone) to counter-act those effects, does the prednisone act to partially/completely reduce the efficacy of the ipi? 

3.  Can the ipi and/or prednisone be a reasonable explanation for unexplained and very sharp and debilitating hip pain in one hip?  (This one hip also has an artificial replacement.)   A team of doctors (oncologists, surgeons, hip experts) have ruled out the patient's melanoma as the cause.  Tests run for this include X-Rays, MRI, bone scan.

(Any cites to news or journal articles, etc., would be appreciated.)

Thank you very much!  From reading the posts here, this is a wonderful community, and I wish everyone the best.

Ray

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