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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Lori1976's picture
Replies 5
Last reply 9/19/2012 - 11:45am

I'm wondering if anyone else has both Melanoma and Crohn's Disease? I was diagnosed stage1 MM in 2000, NED until 2/12 when a biopsy showed MM insitu again on my abdomen.  In 2004 I was diagnosed with Crohn's Disease. It has been quite challenging treating an autoimmune disorder with a cancer history. I need my immune system in terms of keeping MM at bay, but it is that same immune system that is overactive in my intestines causing my body to attack itself.  I am not a good candidate for ant-TNF therapies and the immunomodulators also carry a cancer risk.  I am surely not the only one to be diagnosed with both diseases and I'm really searching for anyone with some advice. My doctors are at a loss, despite being treated in a University setting.

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Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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Hey Everyone,

Im very happy to report that my husband Craig's latest scan was all clear, which puts him at week 84 on the GSK BRAF inhibitor trial. His oncologist was very pleased, and we are so grateful that he has responded for such an extended period.

Just wanted to share this great news with everybody.

Cheers

Lisa

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Hi all! Have a quick question. I completed IPI treatment the first week in January. Side effects continued through March, but ebbed substantially. Yesterday, all these months later, I had effects as if I was in the middle of treatment. Couldn't keep my eyes open I became so sleepy, then really bad itching, and when I was asleep I even drooled! Is this normal? And does it mean the Mel is rearing it's ugly head again? I had scans last month and have been NED since March. Thanks for the input! Bless you all and keep fighting!!

I can do all things through Christ who strengthens me.

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 They posted on FB

 

I now have two Heavenly Fathers, as my earthly father, Bob Lockey, went to be with Jesus last night after his battle with melanoma for over 2 years after his original melanoma over 20 years ago. He was so peaceful and comfortable, for which we are thankful.
Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Karin L's picture
Replies 5
Last reply 9/18/2012 - 11:38pm

I APOLOGIZE for just now getting back here...it's been one of those rides and I have run out of gas  I posted a ten days ago (something like that) about my side affects with Zelboraf.  I literally got every one.  At 7 days they took me off.  As of yesterday, all side affects seem to have lessened or gone away.  Everything but the fevers and chills.  We are on day 15? now?  Something like that. 

Anyway, on Monday evening (last week) my Oncologist's partner wanted me seen at the ER.  She was concerned about the fevers lasting so long after stopping treatment.  Off we went.  Diagnosis after chest x-ray.....Pneumonia.  What?!?  Ok, so be it.  I stayed for IV round of antibiotics and sent home with script for Avalox.  Had appt. with my reg Onc. on Wednesday.  He did not believe it was pneumonia, but he did believe it to be mel.  He asked if I have the blood cultures which I did not.  Once I got home I called the Dr. who had the results and had them faxed to my Onc.  The cultures were neg. which rules out it being pneumonia.  Dizzy yet?  Onc. also put me back on Z 1pill 2x a day for 3 days, 2pills 2x a day until we get back from a short trip with the family (first in YEARS). 

I have no clue where or what my disease is doing.  Scans sometime in Oct.  I just want to feel good for a bit, ya know?  These all day all night fever episodes are getting the best of me.  Today, I will bake gingersnap and choc. chip cookies to freeze for the trip and turn my back on the beast. 

I pray for all of you each and every day who are warriors fighting the ugly.

 

Karin

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awillett1991's picture
Replies 2
Last reply 9/18/2012 - 10:03pm
Replies by: AllyNTAus, POW

After some very questionable areas on my PET 2 weeks ago, I had a clear CT report yesterday. So after 5 mos on ( and off) Zel, tiny brain met resolved, and cardiac tumor has shrunk to the point it isn't visible on PET but MRI shows it as 7x11. And NOTHING NEW!!

Due to my low lymphs (thanks biochemo) + cardiac met, I am intelligible for HD IL2 or any trials :(. Before Zel fails we are going to try IPI since I've never been on it. Probably next wk - waiting on insurance and I have to wean off 5mg of Prednisone I've been on since April.

Then going back on the Zel, or hoping the new BRAF and MEK drugs will be approved by then. Some lesser side effects would be great. At 5 mos, the hair on my head JUST stopped falling out, it is so thin now - blech.

Would love to know if anyone has tried this or similar. I don't really have a lot of options, yso this seems reasonable to me while I have very little disease.

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My husband has stage 4 melanoma with metastasis to the liver. He was on Zelboraf which worked well until 1 month ago when a new tumor appeared and his liver tumor became active again on the PET scan. Does anyone know of clinical trials specifically for Zelboraf resistance?!

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Gene_S's picture
Replies 21
Last reply 9/18/2012 - 1:37pm
Replies by: jordangurnzz, Anonymous, frankMill, natasha, mlbjab
After watching this video preview,
 
Healing Cancer From The Inside Out - Preview
 
 

I located a copy of the DVD and here are some of the numbers mentioned for melanoma patients.

It should be noted that these numbers are from 1995 when there was no successful treatments. 

 ------------------------------------------------------------------
 
Stage II Malignant Melanoma
 
39% alive after 5 years (typical diet and conventional treatments)
 
82% alive after 5 years (plant based diet with no conventional treatments)
 
-----------------------------------------------------------------------------
Stage IV Malignant Melanoma
 
6% alive after 4 years (Conventional treatment and typical diet)
 
39% alive after 4 years (adopted a 100% plant based diet)
 
-------------------------------------------------------------------------------
Stage I & II Malignant Melanoma
 
That adapted a 100% plant based diet had a 100% survival rate after 5 years
 
--------------------------------------------------------------------------------
Stage III Malignant Melanoma
 
That adapted a plant based diet had a 71% survival rate after 5 years.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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kbrenner's picture
Replies 33
Last reply 9/17/2012 - 11:52pm

Hi all,

I was diagnosed with melanoma just under 2 weeks ago.  My dermatologist has had melanoma herself twice and assured me I'd be alright.  I had a mole removed from my scalp that was .3 centameters and she got me immediately in to see a plastic surgeon who they say is excellant.  Heard nothing but good things about him.  I know this is something I can not mess around with and need to get taken care of ASAP.  So I'm all set for surgery on Sept 10th.  They will be taking a skin graft from my leg for it.  Of course shaving the area on my head, I've always had very long hair so that's a change in itself, but the least of my concerns.  My concern now is am I making the correct choice, or should I be trying to go to the MD Anderson Center?  My Dr. mentioned the Moffit center in Tampa (I live the on the east coast of FL)  But she did not think it was necessary.  I've been reading some of the postings and it sounds like the MD Anderson Center is the place to go and I checked my Insurance and they are a prefered provider.  I do hate to delay, so I'm thinking I should go ahead with the surgery and if needed later follow up with MD Anderson, but I really don't know what to do.  My Derm. has been really supportive and since she's been through this before I feel good about what she tells me and try to stay positive.  However there are still  times I'm afraid it's going to end up being much worse and am worried I'm not going to be around to watch my beautiful little granddaughter grow up.

Kari

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nickmac56's picture
Replies 18
Last reply 9/17/2012 - 11:26pm

My wife is Stage 4 with tumors on lung being monitored as part of her clinical trial on Ipi.  Has had a number of subcutaneous tumors removed.  Is getting her 12 week scan next Tuesday, but we know Ipi hasn't worked, yet, because minimally she has some new ones on her back and stomach.  We suppose it's possible that there may be some effect between week 12 and week 16 scan - anyone else seen reductions during this timeframe?  Our oncologist is terrific and there is great care here in Seattle, but we are running out of options.  One thing we apparently will try next week is a permanent regimen of Tamoxofin  - to shut down her hormone system because in the past there has been some weak linkage to hormones and melanoma - any one else gone this route?  Lastly, assuming Ipi failure, has anyone then gone on to IL-2?  She started off with Leukine which got her onto the clinical trial when she had a reaction to it.

thanks for any help or suggestions,  Nick

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

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Mandi0280's picture
Replies 2
Last reply 9/17/2012 - 12:12pm
Replies by: Mandi0280, Janner

Husband was diagnosed with stage 3b last October. Had wide excision on his chest and 20 something lymph nodes removed with 1 positive under his right arm. This was followed with a PET scan that showed nothing according to my husband oncologist. Fast forward and he has had several different scan since then that according to the dr hasn't shown anything. 3 months ago we go in to get routine CAT scan results from dr and he says everythig looks good & that there are 2 lymph nodes in the neck showing up as "larger than normal" but they have been there ever since the very first PET scan that my husband had but do not "light up" on the scan as being cancer.  (we were never told until this last visit that those lymph nodes were "larger than normal") So he says that any person can have "larger than normal" lymph nodes that mean nothing ...referring to anyone that has never even been diagnosed with melanoma. So he says that we will just keep a check on them to make sure they do not grow. I looked at the report and the nodes show "stable" .Has anyone ever herd of this before? Should I be asking for something more than just keeping a check on them? I like to think they are nothing since they don't light up on a PET but it makes me nervous. We go back for 3 months scans this Friday.

Thanks,

Mandi

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/17/2012 - 11:51am
Replies by: Janner, Anonymous

I've was diagnosed with early stage melanoma years ago.  I only needed wide excision.  I am considering getting a tattoo.  Are tattoos safe for melanoma survivors?

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Thanny's picture
Replies 15
Last reply 9/17/2012 - 8:15am

Hello All. My wife is stage 3C and after a year of NED, she has had 4 tumors pop up between her primary and her lymphnodes (had 2 lymphnodes removed last june, both positive for melanoma) in the span of 45 days which means that the melanoma is in transit. Outside of her surgeries (to remove the primary and the lymphnodes) she has never recieved any treatment, which makes her eligible for the GSK MEK and BRAF trial. 

This comes as a big blow to us, as we were hoping to start a family soon. If we enter the trial we will have to give up on starting a family for at least 3 years (god willing), so with those things in mind, we were hoping some of you can speak on our situation.

Once melanoma starts coming back in her limb, what is our prognosis?

Do we have time to try for children before entering treatment? if not....how about after?

If we do have time before starting treatment, we were thinking of having an isolated limb perfusion before we start trying, with hopes that this would buy us some more time before she can start treatment. Is this a good option?

Please don't think we are being selfish or greedy. I know some of you out there would kill to be in our shoes, and we do recognize that even with this bad news, we are still fortunate to have these options. However, like it or not, these are our options and we would be foolish not to seriously consider each one.

 

Thank you in advance,

Nate and Thanny

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gabsound's picture
Replies 12
Last reply 9/16/2012 - 11:54pm
Replies by: gabsound, LynnLuc, audgator, Anonymous, awillett1991

I posted earlier about my last scans and started doing some reading on Anti PD1 trials, which I know are hard to come by. But the first two I read specifically excluded prior Anti CTLA or other immune treatment. My heart sank. If, I need another treatment I thought that would be the next one.

Does Yervoy exclude you from all Anti PD 1 trials?

I'm BRAF wild type (negative). I have the NRAS mutation. What else should I be looking at?

Any advice would be appreciated.

Julie

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