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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robbier's picture
Replies 2
Last reply 10/31/2013 - 1:39pm
Replies by: Michelem, Tina D

Hi:  I was diagnosed 2 years ago with Melanoma Cancer stage 3 A, one Dr says A, the other says B, anyway, last week on Oct 18th I went for my second pet scan of this year, at the present time I am being followed, still in remission, I was the one that opted to not to do chemo, the Dr said remission, and my thought was, you are saying remission, so I will just be followed.  That is what I am doing, even though I go for my test, and follow-up visits, its been hard.  But my beliefs in God, and good suppot has help me.  Mainly my belief in God, and the strength to walk this out.  I go back in Jan of 2014 for a follow up visit, and don't have to do another PET scan for 6 months.  So ya'll here, keep you chin up.  Be encouraged. 

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Michelem's picture
Replies 2
Last reply 10/31/2013 - 1:35pm
Replies by: Michelem, pd1gal

My husband had surgery last week - eight lymph glands removed a very deep melanoma from the bottom of his foot, which wound was then covered with skin harvested from his thigh. The harvest wound was covered with a mesh fabric and bandages. The doc tells us it is up to my husband to now remove that mesh - either by tearing it off all at once, or gradually peeling it off a tiny bit at a time. Either way it is painful.

The expectation is this will cause the wound to bleed, he is to wear shorts and keep it open to the air so it will heal over. But getting that mesh off will be painful and difficult - has anyone here got any thoughts on how best to manage?

We have other questions regarding next steps, but this is occupying our attention right now! Much thanks for any help or ideas. 

MicheleM

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MattF's picture
Replies 2
Last reply 10/31/2013 - 12:49pm
Replies by: Michelem, BrianP

I signed into the Ipi vs Interferon Trial at UCLA.

It is random trial of either Interferon High Dose or Yervoy (Ipi) Low Dose.

Just doing admin stuff and tetsts soon....told i will be randomized and start within 3 weeks.

I will keep everyone updated.

Matt

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hopeagain's picture
Replies 5
Last reply 10/30/2013 - 1:19pm
Replies by: MaryD, Judy D, sailinjeffnk, doro, Anonymous

Anyone knows of a good melanoma oncologist in the San Francicso area? What treatments does he offer?

Anyone treated by Dr. O'Day? What treatments does he offer?

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ajolvey's picture
Replies 6
Last reply 10/30/2013 - 10:18am
Replies by: ajolvey, heather F, Janner, Anonymous

Recently diagnosed. Not sure where to start...

My melanoma is on the back of my leg and is a T1A, Clark's level 3. The depth is into the pappilary dermis. Does this mean it is more likely to have begun to spread?

Anybody had melanoma in that location? How bad is the surgery to remove it and what is the recovery time?

Thanks,

Aaron

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Hi,

I had this question a while back: where can I find more about the cost of medical procedures across US and finally I found a website that provides the means to access it.

http://www.pontushealth.com

The site allows sharing of previous experiences about medical procedures, doctors, etc. and get free access to similar information when it is launched early next year. All I needed to do was to fill in a 10 minute survey and provided them with an email address where I'll receive my account and password.

I thought this might interest some of you.

Cheers,

a patient like many others

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shonnat's picture
Replies 6
Last reply 10/28/2013 - 5:03pm
Replies by: shonnat, Anonymous, Janner, POW, Mat
My husband was diagnosed in June with stage 1V mel. 3 tumors in the brain and one lymph node in armpit and one in abdomen. 1 brain tumor was 2.5cm and symptomatic and become 3cm within 2 months. The other 2 smaller and stable and have not changed since diagnosis. Was given wbr immediately and then a decision to have gamma knife surgery about 6 weeks later on the large tumor. Once that was done he started on Zelboraf. He has been on Zel for 2 months with no response in the body or brain. Few side effects from taking it though.
About a month after gamma knife his scan showed slight shrinkage but his presenting neurological symptoms are worse than before surgery. He has lost the use of hand and leg on one side of his body They say its the brain swelling and he is on high dose steroids.
They are not helping either. We will wait and see if it can get better. It takes 3 months they say for radiation to fully work.
We are being treated at the BC cancer agency which I believe is very good.

His medical oncologist is surprised that Zel is not showing results. It usually acts fast. Does anyone have experience of it kicking in later. She is waiting another month to see if there are changes then she is thinking of trying Temador as it crosses the BB and he has hardly any issues with mel anywhere else. Has anyone had any success with it for the brain? We could try IPI but maybe later as it doesn't seem to have a high % of success with brain mets, or am I misinformed.

Its very tough as we have had not much success in any area. 

Any suggestions or positive experiences could really help at this point. :idea: 

Thanks
Anna

 

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jean pierre's picture
Replies 2
Last reply 10/28/2013 - 12:02pm
Replies by: Anonymous, Tina D

Hi All

 My wife 33 years old , had 2 moles removed 18 month ago witch tested positive with melanoma, the doctors said they removed all and she is fine.

She complained about her hip and after about a month of seeing one Dr after the other the scan showed a tumor in the hip.

After waiting for 3 weeks and no treatment she went for a PET scan and the cancer is now in her hip back and liver.

Its almost  2 months now and still no treatment , we are waiting for the B-RAF test and hopefully she can join a new trial in South Africa.

I read about YERVOY is it available in south Africa ? Do the medical aids pay for it and is it an option ?

The Dr said surgery is not an option and chemotherapy is not very successful , can you please give me some advice and hope ?

 

Thank you

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momof4's picture
Replies 21
Last reply 10/27/2013 - 6:55pm

So went to the dermatologist yesterday for a black mole looking spot under my nail.  Long story short thought it was a bruise, had it since 2008, always had nail polish over it and didn't pay any attention to it.  I am having surgery and biopsy on Friday and I am in disbelief of this whole situtation. I never even knew this existed.  I had been to the derm before to have moles removed, all the while this was on my toe and I wasn't paying attention to it.  Anyways I was wondering if there are any stories of of others who have this.  I am 35 yr old white female and it looks as if this is pretty rare for my demographic. I am trying to stay away from studies I am reading because I have read the 5 year survival rate was only 40%  in subungal melanomas on the toes. Any insights? Thanks in advance :)

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eastbay123's picture
Replies 8
Last reply 10/27/2013 - 9:37am
Replies by: Anonymous, JerryfromFauq, JTiernan, eastbay123, Linny

It is near the center and it seems too small to be an injury. (It is less about 1/8")

My doctor is sending me to a specialist for diagnosis. How concerned should I be? Is there any way to tell by looking? Can anyone here offer insight or suggestion?

If they do a biopsy won't that spread cells that might be really bad to spread??

I am very concerned as there is cancer in my family.

 

Thanks,

David

 

 

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parkmk80's picture
Replies 9
Last reply 10/26/2013 - 10:09pm
Replies by: Janner, parkmk80, Anonymous, SABKLYN

My hubby was diagnosed with melanoma in situ on his back on Monday, Oct, 21, 2013.  They aren't doing the wle until November 4th!  I am defintely freakiing out for him.  Things can grow so fast and you just never know.  Does this seem normal to anyone?!  I am also pissed because they did a shave thinking it was a bcc or dn.  The path report came back with superficial margins so there is clearly  mel cells left behind.  This is beyond terrifying.  We have 2 little girls and a baby on the way.  :(

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Erika's picture
Replies 7
Last reply 10/26/2013 - 7:55pm

I just joined this community. My husband was diagnosed with Stage III melanoma 11 years ago, and it progressed to Stage IV brain and skull metastases at two different times. He is alive, and I guess "NED." This is a new word for me. In fact, there is a lot of jargon and abbreviations on this site that I need to look up.

I have what could be called a "good problem," yet it is a problem just the same. How does one make life decisions with a husband who is supposed to have died, but didn't? Is he "normal" now? Or should I stock up on life insurance whenever I can? We did have 2 daughters after his diagnosis, so clearly I didn't just give up on life with him. But I do feel alone. Anyone else out there in a similar situation? I'd love to hear from you.

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hi -- my name is Ursula -- I've posted a few times over on the MIF forums, and may have met some of you there.

I've got stage IV melanoma with several abdominal mets that turned up on my follow-up CT scans back in June. I'm 38 and have three young sons (2, 4 and 6).

I'm determined to get to their high school graduations. (stats be damned..!)

I'm part of the BMS phase I open-label trial looking at the combo of Ipi & Nivolumab (BMS's anti-PD-1 inhibitor).

I see Dr. Wolchok in NYC, though I live in Canada and am flying back & forth. 

I'm at week 11, and so next week I go for my fourth combination treatment. My scans are at the end of Oct.

I'm a bit anxious, because I've basically had no side effects at all, and I know that some studies have suggested that responders to Yervoy tend to have worse side effects (grade III/IV immune reactions)

Does anyone know if this has turned out to the be case? Is it crazy to be wishing for side effects? I just want some indication that these meds are working!!

I've had a little fatigue -- but who can sort that out from airplane-related-tiredness and being with little boys all day?! And I have a few little red spots on my forearms that might be related. I had some diarrhea a couple of weeks ago that I was all excited about (!?) - but it went away as fast as it came. 

One promising thing is that I used to have a longitudinal brown stripe on my right thumbnail, which no longer goes all the way to the base of my nail. (the new-growth part of the nail is clear) So I pray that this is my own little bioassay and that the same thing is happening in my abdomen. (if anyone wants to see a photo of the nail on my personal blog, it's ursulasmelanomablog.wordpress.com http://ursulasmelanomablog.wordpress.com

(As an aside -- I don't know how to get rid of the inaccurate link to the blog in my signature! How do I access my profile on this site?)

I know that Maureen & Brian are on this same trial -- I'll look forward to hear about others' experiences.

all the best,

Ursula

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We are in the process of organizing a market research study amongst Melanoma Stage III and IV patients who are currently taking medication for their melanoma. We are seeking patients and their caregivers/family members.  
 
Time: Open 
 
Location: From home - writing answers to the same 6-7 questions for 30 - 45 minutes a day for 1 week
 
Compensation:  You and your family member/friend/spouse will receive $325 in total for your participation, which can be donated if you so wish. 
 
All responses will be confidential and aggregated and/or without identifying information.
 
Please contact Shanon Sitkin at shanon@clinicalrss.com should you be interested.
 
Thank you,
 
Jan Mallery-Groom
Clinical Research Support Services
+415.896.4645

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Haven't seen this article posted on here.  Pretty interesting read on the state of melanoma treatment and the cost associated with in.  Thanks to CherylL for forwarding it to me. 

http://www.ajmc.com/publications/evidence-based-oncology/2013/Sep-Oct-20...

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