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
Replies 7
Last reply 9/26/2014 - 10:21am

My father in law is currently very sick and homebound. He has melonoma in his liver, lungs, spine, spleen, and brain. He is physically weak and his mobility is limited. About all he is up for most days is going from his bed to the couch in the living room. Even when on the couch he has to lay down, he cannot sit up for more than a few minutes at a time. Mostly he watches tv and shows little interest in anything else, also he can't really do much else. He started taking the Taf/Mek combo in May, at first it worked really well but then he found out on Monday that it has stopped working and he will be starting Ipi next Monday. This news has been hard on him and it feels like he is withdrawing even more, he has been sleeping around 16hrs a day up from 12 hrs a day before getting this news. He lives with me, my husband, and my brohter in law, the three of us are tyring to think of ways to lift his spirits and stimulate his mind. He has fought really hard over these last 7 months since the mets were found in his liver and we don't want him to give up now especially since there are people who have been on ipi for years and are now no evidence of disease. Any suggestions? Sorry it is such a long post. 

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Anonymous's picture
Replies 19
Last reply 9/23/2014 - 5:30pm
Replies by: Anonymous, Janner, hbecker, Teochasse

Hi...just found this wonderful site. My brother-in-law recently had a lesion removed from his arm, and when path report came back, derm said it was metastatic melanoma that didn't orginate in the skin. He indicated that the situation is very serious.

My BIL had eye exam today, negative for ocular melanoma. Blood test two days ago, with no results back yet for possible liver compromise. PET scan scheduled for Monday.

Question: If you're told you have a non-skin melanoma that also isn't ocular, do you have mucosal melanoma? And is it automatically stage four if it orginated inside the body, then spread to the skin?

BIL's general practioner, unbelievably, said he "didn't expect the tests to show anything." Huh? Is it possible to have metastatic melanoma and not have a PET detect it?

Wow, is this frightening. Thanks for any insight, and glad to have found you.

 

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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Hstevens0072's picture
Replies 1
Last reply 9/19/2014 - 7:59pm
Replies by: SteveH230

I remember reading a blog of a young mother that had melanoma.  She lived down South and I think went to Vanderbilt for most of her treatment, although is think she also went to MDAnderson.  

Can anyone tell me the name of her blog?  I found it so inspiring and would like to read it again.

Holly

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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Anonymous's picture
Anonymous
Replies 10
Last reply 9/22/2014 - 9:09pm
Replies by: Anonymous, Squash, Annalive, Tim--MRF

I have been looking at some links and a documentary about the use of a drug he developed privately. My search started as i was looking for research and studies on the use of cannabis for melanoma. Does anyone heard about Dr Burzinsky's Clinic in Texas? There is so much debate about his approach and some conspiracy theories attached to it that it is hard to come to a sane conclusion. My son is receiving IPI and is in stage 3C, so I keep looking for alternative treatment should we find ourselves in that place. Dr Burzinsky seems to have had some success (25%) success with cancer patients with brain tumors who do not want to take the path of radiation for many good reasons. Thank you for your help and time.

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Anonymous's picture
Anonymous
Replies 4
Last reply 9/19/2014 - 7:20pm
Replies by: biancopus, tschmith, Anonymous, arthurjedi007

Hi

I am a stage 4 patient and have failed two treatments.I wonder whether others have been in the same position and what they did bout it

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Anonymous's picture
Anonymous
Replies 2
Last reply 9/18/2014 - 6:06pm
Replies by: Anonymous, Linny

Does anyone else have trouble copy/pasting  web  links on  this site?I have tried couple of times to copy/paste usefull links  yet the copy/ paste function seem to be useless.I wonder if this is a some sort of software problem / function  not  operational on the new version of this site.

Teodora Chasse

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gemmy32's picture
Replies 20
Last reply 9/22/2014 - 2:28am

Hello there wondering if anyone can help me, my mother in law has been diagnosed with a stage 4 maligment malenoma in her lung, she is awaiting doctors to confirm her treatment plan, does anyone know of any drugs that can be taken that work really with with the malenoma. What would be the best treatment for her? She is only 52 has four children an 8 grandchildren, she doesn't want to die it's devastating. 

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Ying's picture
Replies 7
Last reply 9/22/2014 - 6:13pm
Replies by: ecc26, Ying, Anonymous, Linny

Hi everyone! My mom was diagnosed as having melanoma in 2011, recently developed to Stage 4 with metastasis to lung. She has NRAS mutation which is very very rare here in China, and when we went to the best melanoma treating hospital, we learnt that currently there's no specific drug for this mutation type. We are very disappointed. 

 
I did quite a lot research on website and seeking any possibility to get medical treatment aboard. I've been to this forum for several months already but never posted anything. This is my first post. Could anyone suggest some good melanoma treating centres in any countries especially in U.S. and Australia? We desperately need this information.
 
Thank you!
 
Ying

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BrianP's picture
Replies 10
Last reply 10/21/2014 - 6:03am

Hey Chris,

Was just wondering how you are doing.  By my calculations you should be coming up on your 3rd Ipi soon.  Hope things are going well.

Brian

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BrianP's picture
Replies 7
Last reply 9/18/2014 - 7:14pm

Not sure if the experimental drug in this video could have applications to melanoma or not.  The response this patient got was absolutely amazing.  Would be awesome to see more research done in this field in regards to melanoma.  I've heard of this more overseas but not much here in the states.

http://news.yahoo.com/video/round-2-measles-vs-cancer-132032273.html#/bionic-pancreas-father-mission-105013322.html

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AnitaLoree's picture
Replies 11
Last reply 9/20/2014 - 5:12am

Would really appreciate hearing your treatment experiences on pembro/Keytruda.  What should we watch out for?  Husband due to start infusions next week with Kaiser general oncology, NOT @ melanoma specialty ctr :-((.  Worried that he will not get: smart care, knowledgeable providers, prompt, appropriate care for side effects. Noted posting for "Askanurse@melanoma.com" and will contact plus thoroughly read complete pharmacological info.

Bcs husband's mel cervical spine (C1-3) location so rare have not posted in long time but have monitored your posts which have been so very informative and helpful refs. 

Hx: Resection surgery, partial, 10/28/13. Husband has unk origin vs primary extra medullary intradural mass anterior to cord @ mid C2 (13x7x4mm) with contiguous mass in the ventral cord @ mid C2, con't unchanged from MRIs post focus beam radiation 02/14. Unk if tumor grew after surgery bcs pre radiation MRI not done.  PETs neg for addt'l tumor sites (he is SO lucky).  Since tumor has been stable, plus they don't know what to do, Kaiser counsels "Wait & See" (!!! like for what?).  Got ref to UCSF mel ctr and could enter ipi/pembro/IL-2 trial.  Worried about ipi as so many have posted that ipi enlarged tumors before shrinking/disappearing.  No room for enlargement here and any more damage would be permanent.  Already permanent tingling numbness hands, feet, no temperature sensitivity left side.

With the early FDA apprv'l Pembro, Kaiser can give & will per our request. It will not be necessary to survive ipi 1st.  Would like to go to UCSF for mel mgt but don't have open period to change plans until end of yr.  Too long a wait.

Have him taking turmeric (curcumin+piperine)/Jarrow formula - @ Whole Foods;  3x/d glass Japanese green tea, Sencha/Macha highest in EGCGs, available Costco; no inflammatory foods, hi glycemic index foods; mostly alkaline foods, kale smoothie every day, Vit D3 1000 IU daily; safe fish (use Monterey Bay Aquarium guide app); organic fresh, raw, veggies, sprouted grains, no processed stuff.  Really not huge difference from previous eating pattern.  Just have dropped the wine, beer, desserts, muffns and some of the grains that are more acidic.  Did this help keep his tumor in check???  Feel good about being able to do something that has quite a bit of good studies and data to support helpfulness of wholistic approach!

 

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FlakitoAJZ's picture
Replies 5
Last reply 9/21/2014 - 2:20pm
Replies by: Anonymous, Tim--MRF, FlakitoAJZ, malika

Hello everyone.

 

I have a 3 year old girl and last year (2013) around October this weird pimple appeared on her chest. It looked nothing serious, we assumed it would dissapear eventually. Except it didn't, it began to grow , particularly upward, against the skin surface in a pointy sort of way.

We made an appointment with our local Cancer league to have it removed and have a biopsy test made on it.

The thing is the biopsy results don't come until two weeks and the doctor that removed the tumor said that upon looking at it he thinks it's melanoma.

But really? Melanoma on a 3 year old? Do you know if a case like this has indeed happened somewhere? I thought that melanomas appeared at 13 years old or more, not as early as 3 years old. Actually 2 years old since it appeared last year.

Please share any info you can, my wife and me are extremely worried and need to know more about this. Thanks in advance for any info you can provide.

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Melissag0624's picture
Replies 6
Last reply 9/19/2014 - 9:01am

For those people who have brain mets, what was your first symptom? I am stage 3b and have extreme dizziness and I am worried. I have called my doctor, waiting for a call back......just wondering if anyone's first symptom was dizziness.

P.s. sorry for overreacting, it's hard to not go straight to the cancer when new things happen.

<3 Melissa

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