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.

Expand/ Collapse Topic
 
Replies By
View Topic
Bugandi's picture
Replies 7
Last reply 3/9/2011 - 9:56pm
Replies by: Lisa - Aust, Anonymous, KellieSue, dawn dion, Bugandi

Hi,

I have been on the GSK BRAF/Mek trial for 8 weeks now, and go for my first ct scan tomorrow.   Hoping and Praying for good results.  So far, the trial as been ok, but some of the side effects have gotten me.  Extreme joint pain in my feet and hands.  Taking oxycodone for it, which leaves me fatigued.  Otherwise, very few other side effects.  Anyway, wish me luck.

B

Login or register to post replies.

I was diagnosed in November of 2010 with a 6mm Melanoma on the inside left thigh.  Since then I have had the wide excision and sentinel node  biopsy in December 2010.  One of three nodes had microscopic cancer cells which prompted the superficial groin excision in February.  Thankfully all nodes were clear.  

 

So I still have three drains in and will likely not be ready for the next step until late April or May.  I am presuming it will be Interferon but since I am a 3A with the larger tumor , I am not sure.

 

Just looking for advice to boost immune system or what preparation I can do now while I am waiting for the next step to begin.

"Hope is the only antidote for fear" Lance Armstrong

Login or register to post replies.

Newmom's picture
Replies 13
Last reply 4/25/2011 - 1:16pm
Replies by: Janner, Newmom, lhaley, Ranisa, Anonymous

I was diagnosed in 7-2005 with Melanoma on the back (0.25MM - Stage 1A, Clark level 2) three months after I gave birth to my daughter.  My 2nd daughter was born in June the following year.  Last night I noticed that a mole on my 2nd daughter’s butt (she had it since she was a baby) has changed in color and immediately took her to my dermatologist this morning to have it biopsied.  The doctor said that 2 new moles have grown on top of the existing mole so the color is different but thinks it is a good idea to have it biopsied.  In event, I am freaking out and lot of unpleasant memories came back … I googled and it appears that pediatric melanoma is rare and extremely unpredictable … sorry but I just need to vent a little … any thoughts?  The doctor said the result will come back in a week … I don’t know how I am going to survive this week …         

Login or register to post replies.

glewis923's picture
Replies 14
Last reply 3/10/2011 - 7:05pm

Hello from Hoboken, GA:  After 1 wk. SRS then 2 wks. WBrainRad,  I'm now offically on Ipilimumab (IPI).  Started last Thursday, less than week after WBR. and feeling quite well under circumstances.  Questions on IPI:

1- How long did it take for you to "present" any side effects..? 

2- Took bath last night and started itching around waistline, upper thighs;   stopped after I cooled off;  IPI ??

3- Is it really true that showing some side effects "means its working"?

 

Thanks for any input.  Love, Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

Login or register to post replies.

hi,

This is very minor issue, but was curious.  I have been off of interferon for year and a half.  My cholesterol was normal before interferon, but since doing interferon it has been high.  I hoped a year after being done with interferon I would see cholesterol go down, but instead it has gone waaaay up.  I have spent past year eating low fat, no carb, healthy diet, exercise daily blah blah blah haha do all that I am supposed to but it has gone from over 200 to now over 300.  I wondered has anyone else found that the interferon did this? I would like to blame it on that, doctor pushing me to go on medication but I am trying not to, but seems I have going to have to. 

thanks laurie from maine

Login or register to post replies.

kbc123's picture
Replies 12
Last reply 3/11/2011 - 11:23pm

I am up in the air here wondering if I am not treating myself as I should.

My surgeon says watch and wait because it is so microscopic in my one node..  All the studying I do on here tells me I should be looking further into this.  My surgeon also said to me that technically, yes I am 3A but he doesnt put me in that category because of what they found in lymph node. To me?  It was still found there so I am 3A?

I was making my second opinion phone call today but I do hear that Sloan Kettering in NY will not even offer a treatment either?  Maybe I should make the appointment in NYU or Penn or whereever...this is so confusing.

Help !  And have a blessed day !

 

Login or register to post replies.

Shelly in Switzerland's picture
Replies 11
Last reply 3/10/2011 - 6:14am

On Friday I was told that I do in fact have brain mets as well as edema.  It looks like the only option in Switzerland is WBR.  Their protocol is that if there are more than 3 tumours they do WBR.  After that they would do targeted therapy.  Thoughts???

Screaming, crying, and reeling with this news!  Trying to stay on the positive side of things though.  Ipi looks like an option for brain mets.  Am I correct on this? 

Shelly

Login or register to post replies.

akls's picture
Replies 7
Last reply 3/8/2011 - 6:15am
Replies by: akls, Anonymous, LynnLuc, Vermont_Donna, Jerry from Cape Cod, Fen

Hi all.

I haven't posted much about me lately because it's been pretty boring :)  I went for my yearly ob/gyn exam and all was good except my thyroid levels both free T4 (low) and TSH (high) which puts my hypothyroid.  Not really uncommon after inteferon from what I hear.  After finding out my levels were off, of course I start feeling where my thyroid is.  One side is noticably larger, my Dr. said he could see it and feel it, but just one side.  So...instead of just putting my on synthroid, he is scanning my thyroid on Thurs. just to make sure there are no nodules or whatever he is looking for.  Now my mind is freaking that it's back.  Any comments would be appreciated.  I am probably just being me and worrying over nothing.  BTW I had a clear PET in July 2010.

I read the board daily and comment when I think I have worthwhile advice.  I am in awe of all the warriors on this site. 

 

Amy S. in Michigan

Stage IIIA 5 years NED Completed 1 year interferon 2009.  God is Good.

Login or register to post replies.

But, has anybody heard from Amy Busby, or JillnEric in a while?

Insert Generic Inspirational Motto Here

Login or register to post replies.

heg50heg's picture
Replies 7
Last reply 3/7/2011 - 12:04am

Interferon treatments to start on Monday. If anyone else is in this posistion, maybe we can share experience. Kind of afraid of the next month and then the second 11 month period as I am hearing many different stories on the side effects, but after talking with the melanoma team at St. James in Columbus Ohio I feel I really need to make it through for best chance of relapse. I will try and stay in touch

Login or register to post replies.

heg50heg's picture
Replies 7
Last reply 3/11/2011 - 10:59pm

Interferon treatments to start on Monday. If anyone else is in this posistion, maybe we can share experience. Kind of afraid of the next month and then the second 11 month period as I am hearing many different stories on the side effects, but after talking with the melanoma team at St. James in Columbus Ohio I feel I really need to make it through for best chance of relapse. I will try and stay in touch

Login or register to post replies.

RMcLegal's picture
Replies 45
Last reply 10/25/2011 - 8:37pm

I recently read a discussion board post by a woman, newly diagnosed with melanoma, who wrote that several of her friends had responded "at least you don't have breast cancer".  This inspired me to write a new blog post, mostly tongue-in-cheek, about melanoma awareness unfairness.   www.hotelmelanoma.blogspot.com.  Does anyone else sometimes suffer from pink fatigue?  Best wishes to all.

Login or register to post replies.

mom3girlsFL's picture
Replies 4
Last reply 1/14/2012 - 6:56am

Anyone had issues with itchy skin?  Not on any treatment right now, off interferon since sept.  A little nervous because I googled itchy skin symptoms and came up with possible internal issues with liver.  Have onc appt tomorrow so of course I will bring it up, just need to shut my brain down from all the negative thinking but would also like a "heads up" if this was a symptom for liver mets?

Thanks, Laurie

Do not fear tomorrow, God is already there.

Login or register to post replies.

Erinmay22's picture
Replies 5
Last reply 3/9/2011 - 10:57am

On Tuesday I under went a VAT's procedure to do a biopsy on one of the many tiny (size 2-4 mm) nodules on my lungs.  They removed one spot on my left lung.  Initial tests shows malignant cells (per my surgeon) but they are waiting for pathology to confirm what they are.  I was recently staged a 3b in November.  I was trying to qualify for Ipi trial when these spots showed up on a CT scan. 

So now I am starting to research what my options may be.  Any one have experience and info on what they did?  I am should hear from my surgeon next week some time on what the pathology report said - then I'm sure they will have some options for me as well.  But I want to do some research first.  I have no symptoms, these were just found from the CT scan. 

Thanks.  I'm sure I should be freaking out about this even more - maybe it's because I'm still on pain meds ;)  or if I have figured I can't change the results so I'll take it one day at time. 

Thanks!

Erin

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

Login or register to post replies.

Karen wife of Phil's picture
Replies 2
Last reply 3/6/2011 - 3:48am
Replies by: FormerCaregiver, Fen

We just received the news that Phil doesn't have the B-RAF mutation. My husband's phone died during the conversation with the doc, so not sure what he has up his sleeve. We have an appointment on the 15th so will find out some options then, And the research nurse is going to touch base with us on Monday. We have done IL2, ipi, OX 40 something or other, a bit of radiation. His mets are in his lung and in his intestinal tract. We know they are growing because his pain has increased to the point that he is taking more pain meds. We are kind of at a loss at this point since all the hopeful treatments haven't panned out. The doc mentioned we would look at some other trials. I am just beginning to see mention of this Eisai and MEK/P13. Could someone post some links so I can check these out to talk to the doc about when we see him in a week. We are trying to stay positive but this was a tough blow. We need a little something to hang on to. Thanks for any info any one can give me.

Login or register to post replies.

Pages