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 0

Been thinking about you today.I hope that you get good scan results.Shalom

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dmk252003's picture
Replies 2
Last reply 3/4/2015 - 2:03pm

Has anyone had IV Hydration while doing yervoy treatment?

I just received an email from my moms oncologist stating that she ordered hydration IV with her yervoy treatment due to abnormal creatinine test result.

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Shelby - MRF's picture
Replies 3
Last reply 3/4/2015 - 12:32pm
Replies by: mary1233, Shelby - MRF, CHD

Dear MPIP Community:

The MRF is working to have a bigger and more impactful presence in the mucosal melanoma space and we want to hear from patients who have been impacted by this rare form of melanoma. Please help us by taking this 9 question survey. Your feedback will help guide our decisions on future advocacy and education efforts.

The survey can be found HERE. Thank you in advance for your help! Please feel free to share this survey with other people impacted by mucosal melanoma - we truly appreciate it!

Sincerely,

Shelby - MRF 

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porrige's picture
Replies 4
Last reply 3/4/2015 - 11:53am

Hello Guys,

My sister is just after finishing her two weeks of whole brain radiation and recovering at home, I am so worried about her as her husband has told me that she is completely exhausted has terrible headaches and no mind to talk to anyone and she is  so fatigued. The poor man is so worried about her, and we her family are so helpless to do anything as she lives in Australia and we live in Europe. Its heart breaking for us as we are so powerless to help them right now, and all we can do is send messages, hope and pray. If anyone here has had radiation for Mets to the Brain, can you tell me if these symptoms are from the radiation and if they are will she be like this for long, she is hoping to start a new drug treatment as soon as she settles. She has been through so much recently, with the seizures and exhaustion and missing everyone, I would love to be able to just find out some more so that I can share with her amazing husband who is solely nursing her at the moment.Thanking you all.

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_Paul_'s picture
Replies 7
Last reply 3/4/2015 - 11:51am

So I just got a call from Dr. Lee here in Seattle who is the principal investigator for the TIL clinical trial at the SCCA. She informed me that not only were they able to successfully harvest my TIL cells (they have been incubating in a dark lab somewhere for the last 5 weeks in what I like to refer as "melanoma stew"), but that they show very good tumor infiltration. They are now frozen and available for when I need them.

I had my second infusion of Keytruda last week and it’s too early to know if it’s working, but if it’s not, or stops working sometime in the future, I have a new Plan B waiting!

- Paul.

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It is translated to four languages now:  http://melanomainternational.org/events-webinar/patient-experience-video...

Very uplifting for stage IV patients

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/4/2015 - 9:50am
Replies by: Anonymous

Does a melanoma in situ have a clarks level?

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Replies by: Anonymous

Looking for a recommendation for an excellent dermatologist in the Minneapolis area.  Thanks

"Lord, Together We Can Handle Anything"

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yazziemac's picture
Replies 1
Last reply 3/4/2015 - 9:08am
Replies by: Ed Williams

Hi

My husband, Pete, was originally diagnosed with Stage 3 in July 2013 and has had rapid progression since then:  January 2014, November 2014, February 2015.  He now has multiple mets in liver, muscle and bone and starts Ipi next week.  Is there evidence to suggest that he has a poorer prognosis because of the rapid rate of progression of his disease, as opposed to someone who has years between new mets?

 

Thanks for any information on this.

 

Yasmin

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Anonymous's picture
Anonymous
Replies 8
Last reply 3/4/2015 - 8:31am
Replies by: Anonymous, Janner, JerryfromFauq, pd1gal

I had two moles biopsied on 2/18. The one on my back apparently came back fine. The one on my head, they chose to to an excision within the week. I had that done on 2/28 (biopsy results came back on 2/23). I feel as though they aren't telling me much. And of course I don't understand the dermopathologists terminology. Can someone help me interpret the results? The surgeon who removed the rest of it told me to hug my hairdressers neck because she could have saved my life. And he told me it was pretty gnarly but that's about it and I'm making myself crazy waiting for the new pathology reports to come back. If it is melanoma I can handle it. It's the unknown I can't handle. That is part of my OCD. The lack of control. Thanks in advance. How can I post the report? I'm mobile.

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Make money misery learnt nothing going to make my an unfortunate effect thousand-net died only six weeks to go before the GNCqualify going I've got my according to the Dominique in it to win it baby do everything they doing a splendid he is helping your dream and keeping them motivated do I think imp a cute little pig yeah 1 I'm at her to bodybuilding BioMuscle XR she'll do anything for me she will bend over backwards on offer and I trust today my he's going to have a bad back eight one baby that when I see myself from creating it makes it more exciting for me the average bear can't go grab yeah do Linda is going to have to build evenlarger and more defined muscles can do. not to have any chance to be the biggest meaningless competing for me he was all about competing and for the people worries about being a wallet me is like can I do this you can I do that right and the gym it’s lucky guy it Christopher the cake at.

http://healthoffertrial.com/biomuscle-xr-review/

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tjc0912's picture
Replies 8
Last reply 3/3/2015 - 10:19pm

Hi all

I have not been on this site in a very long time but am now wondering if anyone has any advice.  My dad is 66 and has stage IV melanoma that he has been fighting for 2 1/2 years.  He has tried yervoy, IL2, anti-pd1, a merk trial, radiation and now is starting taxol/carboplatin...throughout all these treatments he has been very itchy (I'm sure part of the disease process as well) but im wondering if anyone else has dealt with this? If so is there any remedy that anyone can recommend? It is getting so bad he can barely stand it?

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Jen P's picture
Replies 1
Last reply 3/3/2015 - 5:54pm
Replies by: Lil0909

Does anyone here from Boston see Dr. Ryan Sullivan at Mass General or Dr. Donald Lawrence at Mass General?  Just trying to find out what you think about them and their bedside manner.

 

Thanks,
Jen

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magnus31's picture
Replies 10
Last reply 3/3/2015 - 8:58am

Dear all,

I haven't been very active in this forum but I do find a lot of support and inspiration in reading through threads in here. So thanks all and stay positive!

After my initial IIIA diagnosis late 2012, I haven't really been blessed with good news. Lung mets were identified during summer of 2014 and I turned stage IV. After a non-responsive round of Yervoy with only mild side-effects, two brain mets were identified in December 2014. At that point I was put on Nivolumab/PD1 treatment as well as scheduled for gammaknife treatment in January 2014.

The thought of my head being fixed and inserted into a machine scared me immensely. At times, even more than the brainmets! But the gammaknife treatment went much smoother than I had feared. The sound of the radio and the fact that I could communicate with nurses through a microphone calmed me down. The scheduled 43 minutes passed by really quickly.  Three days after I worked out again at the gym as usual and recommenced my weekly runs.

Now. I had my first Nivolumab/PD1 evaluation last week. And finally some good news! All mets in lungs and brains had shrunk. Some even dramatically! For the first time since my diagnosis, I felt I finally had found some breathing space. Next evaluation is scheduled for April and I can only hope that the mets will have regressed even further by then.

Since this good news, I have finally dared to look forward again. Planned a move, started pondering a future career move, investing in a house...

But after few minutes of planning ahead, I find myself stopping and asking myself critical questions. Can I medically founded believe that PD1 will work for me in the longer term, just on the basis of a positive first evaluation? Is it reasonable to believe that this drug will keep me alive and kicking for years to come? Is me planning a long time ahead just fooling myself? Will I still be alive in six months? Dare I hope for six more years?

I am enduring no side effects at all from Nivolumab/PD1. Thoughts and stories on the PD1 treatment are welcome. Long-term survivor stories would especially have made my day!

 

 

 

 

 

 

 

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Savvymama's picture
Replies 3
Last reply 3/3/2015 - 3:37am

My mom is 58 years old and presented with stage 4 melanoma in her lymph nodes (neck and groin) in October 2014. She was taken off of Yervoy after only one dose because it dropped her platelet count to 0 and her hemoglobin to 5.5. She had active bleeding. She was hospitalized for 10 days while doctors tried to get her blood counts higher. She then started on Keytruda and was going to have her fourth infusion today but her PET scan showed no tumor response to Keytruda. Tumors are pressing on veins in her legs causing major swelling to her lower extremities. Her doctor will be starting her on a chemotherapy regimen for Taxol and Carboplatin. Does this seem like the next logical step? She is BRAF +. I'm a pediatric oncology nurse so I'm very familiar with chemotherapy but there is a lot I still have to learn about Melanoma. Any advice?  Thanks.

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