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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arthurjedi007's picture
Replies 4
Last reply 3/6/2015 - 10:39am

Thanks to the folks on here I was able to find even locally an upright MRI.

My next big scan after next week is a pet and I can't find that they have created an upright for pet. Does anyone know if there is one? 

Artie

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Julie in SoCal's picture
Replies 4
Last reply 3/6/2015 - 8:38am
Replies by: _Paul_, Julie in SoCal, Anonymous, Mat

Hi there friends!

Thanks so much for your good wishes!  My scans yesterday showed that I only have the one met in my arm. So I'm still feet in stage 3c and toes in Stage 4- metaphorically, of course ;-)  This is such good news!

So, the plan is to start pembro next Wed.  I'll have scans after the 4th round and evaluate things from there, but I will probably be on it for at least 6 months, possibly longer!

Something Rock Star Doc said yesterday that caught my attention was that it was rare for someone to have such a good and complete response to IPI as I had to recur.  I thought this was interesting in that it helped with my disappointment. #$%^&* you melanoma.  But I'm not sure I like falling into a rare category.  But then as it is with statistics like this, it might not mean anything - someone has to reach durable response, it might as well be me!!

Thanks again all!

Julie

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

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Melanoma Prayer Group on Facebook just posted this

share about this FREE event, March 28th, in Tempe Arizona...attend in person OR online! Visit the page for full info! This looks REALLY good!

http://www.patientpower.info/event/melanoma-phoenix-2015

 

 

One of the most common and among the most dangerous cancers, melanoma has seen some tremendous leaps in research, particularly in immunotherapy, which continues to increase our understanding of how to treat melanoma at various stages of the disease. On Saturday, March 28th, in Tempe, Arizona, Patient Power and Banner MD Anderson Cancer Center will hold a free in-person melanoma town meeting for patients and caregivers at the Phoenix Marriott Tempe at the Buttes where you and your loved one can hear the latest melanoma news from leading melanoma experts. 

Hear about emerging therapies, understand current treatment options and learn about support resources. 

During this interactive town meeting, you will have the opportunity to meet and connect with experts, other patients, survivors, and caregivers touched by melanoma. Share your knowledge with your peers, learn and become inspired. 

Judy (loving wife of Gene Stage IV and now NED)

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

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_Paul_'s picture
Replies 8
Last reply 3/4/2015 - 11:43pm

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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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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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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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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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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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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