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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PeterO's picture
Replies 2
Last reply 8/29/2012 - 2:24pm
Replies by: dellriol, kylez

My docs have a plan to treat my metastatic melanoma to the brain that calls for concurrent treatment with whole brain radiation and Yervoy. Anyone else been down this road? Would like to hear from you if you have been. I've just posted on my blog about my thoughts, doubts and convictions about this treatment plan: www.theogler.blogspot.com.

www.theogler.blogspot.com

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My docs have a plan to treat my metastatic melanoma to the brain that calls for concurrent treatment with whole brain radiation and Yervoy. Anyone else been down this road? Would like to hear from you if you have been. I've just posted on my blog about my thoughts, doubts and convictions about this treatment plan: www.theogler.blogspot.com.

www.theogler.blogspot.com

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My docs have a plan to treat my metastatic melanoma to the brain that calls for concurrent treatment with whole brain radiation and Yervoy. Anyone else been down this road? Would like to hear from you if you have been. I've just posted on my blog about my thoughts, doubts and convictions about this treatment plan: www.theogler.blogspot.com.

www.theogler.blogspot.com

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Kelly7's picture
Replies 12
Last reply 8/30/2012 - 8:23am

Im looking for some help or advice...

My brother went through IL2 in February, and then four dosages of Yervoy, ending in June. The scan had the tumors shrinking. Then in July he got headaches. They did an MRI and they found out that his pituitary gland was swollen, so they gave him pregnazone. The headaches went away, but then he got really bad stomachaches. He has been in and out of the hospital now, not able to work, has lost 30 lbs in 4 weeks, and if he eats he either gets diarrhea or throws up. He had a semi colonoscopy a week ago and they found nothing,  and he goes in for a full one tomorrow. 

During the Cancer treatments he never got sick, he never looked sick. Now he looks like a sick patient. He is only 37 years old and it kills me to see him so thin. He cant even think about the Cancer right now, he feels like he is dying, and is spending everyday toppled over in pain.

Anyone know what could possibly be going on?? The doctors cant seem to figure it out!

Thank you for any help!

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/29/2012 - 11:09pm
Replies by: Anonymous, JerryfromFauq, Janner, Everymoment

7 Years ago I had a melanoma removed, it was only .52 and I only needed a WLE. This spring I noticed a small hard lump. The surgeon thinks it is just scar tissue. Previous to this spring the scar was very smooth.. Can Scar tissue show up 7 years later? Thanks in advance for your response. My prayers go out nightly to everyone fighting this disease.

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Anonymous's picture
Replies 2
Last reply 8/29/2012 - 8:50pm
Replies by: FeistyD, melmar

Hi Margo,

 

I am new to this board. I have been reading posts about PD1 and I am  looking for anyone on Merck Pd1 trial.

I am on the Merck PD1 trial in Texas. I am stage 4 and hoping that I too will have shrinkage like you. My first set  scan's, I was stable. In a few weeks, I will have my second set of scans. I am very scared

Margo, I would appreciate if you could post how you are doing to give me hope.

If anyone eles is on Merck PD1 trial, it would be great if you could post how you are doing on the Merck pd1 trial. Any good news of others doing well on Merck PD1 would help me stay strong to get through the scans.

God Bless you all,

Kathy

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/29/2012 - 2:12pm
Replies by: dellriol, Anonymous, jmmm

I've been on Zelboraf for several months.  I know that others have talked about diarrhea as one of the side effects.  I haven't had any stomach issues with it (except for things tasting weird) but the last few days I've experienced diarrhea.  

What have your doctors told you to take if this happens?  Any suggestions?  I'll reach out to my doctors also.  In the mean time I'm making sure I drink lots of water and other liquids.  No stomach aches or nausea with it.  A little bloating but no cramps.  Just a gurgling stomach. 

Thanks!
 

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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mama1960's picture
Replies 6
Last reply 8/29/2012 - 1:26pm

Needle biopsy on lymph node in right groin came back positive. i have appointment with surgeon in Thursday to discuss lymph node dissection. Oncologist says we will follow up with radiation. So it's official....I'm stage 3. I have been looking at threads regarding the dissection, and it looks doable. if any one has anything to add, please jump in.

It is what it is.

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Needle biopsy on lymph node in right groin came back positive. i have appointment with surgeon in Thursday to discuss lymph node dissection. Oncologist says we will follow up with radiation. So it's official....I'm stage 3. I have been looking at threads regarding the dissection, and it looks doable. if any one has anything to add, please jump in.

It is what it is.

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spdg4412's picture
Replies 5
Last reply 10/22/2013 - 12:16pm

New to the board but I thought I would post a my relative's success story to offer some hope to others going through melanoma.

My relative is a male aged 76 years in good health who had a small 'pimple' like mole removed from his face in October 2011. On biopsy, it was diagnosed as melanoma and measured at 2.5 mm in depth. He then had a large excision of the area and had clear margins. He also received a baseline PET scan with no metastases found.

In May of 2012 he had a follow-up PET scan and they found 2 small metastases in his lungs, so he was staged at stage 4. The mets were biopsied for cellular analysis and they did not have the BRAF mutation. After a couple of weeks he began infusions of Yervoy (ipilimumab). He received all 4 infusions about 3 weeks apart each and he had minimal side effects, very limited rash and a little itching, some mild stomach upset, felt cold quite often and also was irritable. Other than some anti-nasea medication, he had no treatment for these symptoms. His doctor was optimistic because these mets were caught relatively early and were still small although I don't know the exact size.

Last week, he had a another PET scan and it showed that the metastases were no longer detectable on the scan!!! Needless to say, he and his family are overjoyed and this result. He does not yet know about follow-up and any potential maintenance treatments. To all around, this has been an amazing development. I'll update when I get more information.

I hope this helps someone out there going through this terrible cancer.

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Is anybody currently doing the trial of Zelboraf and Yervoy combined?  If so, have you had positive results?

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GraemeL's picture
Replies 21
Last reply 9/3/2012 - 8:00am
Replies by: GraemeL, Ashykay, LynnLuc, JerryfromFauq, lhaley, NYKaren, Anonymous

Hi MPIP,

My wife Susan was diagnosed with Stage 3 melanoma in July 2011 and had the lymph nodes in her left groin removed.  Subsequent scans were clear and BRAF negative, so she had interferon which almost killed her.  Two weeks ago on August 13 Susan had a CT scan after having headaches.  A large 31x27x22 mm growth was found in the cerebellum region of her brain.  Growth was very rapid as she had a MRI scan of her brain on March 20 and this was clear.

This melanoma was surgically removed on August 15 and Susan is having 10 sessions of whole brain radiotherapy.  My concern is that melanoma cells have now quite likely spread from the brain to other parts of her body.  Her oncologist says that she cannot go back on interferon and that there is no other treatment available.  I have asked about ipilimumab but he thinks that this is not appropriate.

I would appreciate comments on the best treatment options.  It seems sensible to attack this melanoma now before it gets a chance to establish itself again.  If this highly aggressive melanoma starts growing again Susan's life expectancy could be quite short.

Kind regards,

Graeme

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KMT2003's picture
Replies 9
Last reply 8/28/2012 - 9:01pm
Replies by: KMT2003, Cate, Anonymous, King, Tina D, dellriol, LynnLuc

Well I have only been a member for a month or so but have been dealing with melanoma since 2007. Please read my profile to get my story. On Thursday I went to Moffitt to do the prescreening for the clinical trial I was supposed to start tomorrow. I did the MRI, CT scan, blood work and all that jazz. We then met with Dr. Kudchadkar to go over results that afternoon. She came in will bad news... I can't do that trial anymore because the found some new areas of concern in my bones. Pretty sure it is melanoma... What a shock for me and my husband. The tears started flowing and I am not sure I heard anymore that she was telling us. I was scheduled to do an MRI locally tomorrow but it got rescheduled due to insurance not approving it yet. On Wednesday we will travel back to Moffitt to have the bone biopsy now and they are in the process of testing me for BRAF. Once we get all the results we will start a treatment plan. There are still some trials to do. It is just so overwhelming and scary. I am young with a wonderful husband and two small children so I'm scared to death that I won't be around for them. I also forgot to mention that in area of the new areas I have been having a dull pain for the last two weeks but never thought it would be related....

Kelly

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Jamietk's picture
Replies 5
Last reply 8/27/2012 - 2:38pm

Yesterday was my 7 year anniversary since my melanoma was removed. I assume I am NED. Not having any issues. Will see the Dr. at MDA on Nov 5th. Hope this gives some encouragement to others.

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