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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H555's picture
Replies 4
Last reply 4/5/2012 - 7:53pm

My primary was in 1995, after 10 years of dermatologist screenings (and no recurrences) i never gave it another thought. Last spring i found a swollen lymph node near my groin and my PC had the good foresight to have scans run. June 30th, same day I retired, i had 17 lymph nodes removed from my right inguinal area and upper thigh on my right leg. only one was malignant but there was extension outside the node. i was tested for the BRAF mutation and i haveit. I did radiation in september and then 10 Interferon IV treatments in November and my oncologist and i both agreed after 3 weeks it was taking too much of a toll on my body, by the 10th treatment i couldn't force more than a couple of glasses of water down a day.

 

about two weeks ago I developed a dry cough, after a week of that my PC (again) sent me right out for a chest xray and a wet read, came back as multiple masses/nodules in my lungs. saw my medical oncologist two days later and he set me up with Zelboraf, then had my radiation oncologists (who's done IGRT for prostate cancer for me and high dose radation on the area where my lymph nodes were removed last september). The top lobe of my left lung is partially collapsed and i have one node that's about 3 centimeters blocking an airway. I'm starting radiation today for that node to improve my breathing. I haven't gotten a call from the speciality pharamacy yet, yesterday my medical oncologist said he'd "lean on them" - i'm guessing teh hold up is because I have double coverage (thank God i kept my health insureance going after i retired).

 

I'll post more as this plays out. I'm optimistic about the Zelboraf and know there are several other drugs available if my cancer becomes resistant. sure not how i envisioned retirement tho. if you pray, i'd sure be grateful for prayers. this has stunned my whole family - which has since day one declared we're all in this together. I have a great support system, am in otherwise good health, have lots to look forward to, including a trip to Kenya this summer to visit our youngest son who's in the Peace Corps in Kenya. thank you.

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Lisa - Aust's picture
Replies 1
Last reply 4/4/2012 - 4:23pm
Replies by: Jeff's Mom

Hi Everyone,

My partner Craig is currently on the BRAF trial and we found out today that after 60 weeks he is still responding and his scans are clear. We feel so lucky that he has had such good success. I know there are a few out there who have recently started BRAF so I just wanted to share the news.

All the best to everyone out there

Lisa xx

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AnnaBanana30's picture
Replies 1
Last reply 4/17/2012 - 11:07pm
Replies by: imissmommy2003

I just had to share this...I just ordered a bunch of awarness bracelets and plan to sell them to everyone I know for $5 a piece and give all the proceeds to research.

I thought of this idea for the bracelet the other day. I ordered a white bracelet to represent pale skin. Then in big black writing I put Mela-NO-MORE!! and two black Melanoma awarness ribbons on either side.

On the back side I put a link to this website www.melanoma.org

I am really hoping to raise some money for research and also spread awarness around my group of friends and our community. I live on the lake and have never gone out in the sun (red hair and freckles) but ALL my friends do and I'm really hoping the current situation with my dad and myself will hep them realize they need to be careful and get checked!

I just placed my order and had to share.

I hope everyone has a wonderful day.

Anna

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AnnaBanana30's picture
Replies 10
Last reply 5/13/2012 - 9:03pm

The title says it all. I am having such a hard time lately with all of this.

My dad is stage IV and is not doing well at all. He did three rounds of Temodar in the fall and it was working pretty well and shrinking his tumors and then all of the sudden it stopped working. His doctor moved him onto Yervoy or IPI...I can't remember how to spell it but I think it's ipilimumab? He's done two rounds and is moving onto his third next week. He gets a scan tomorrow to see if it's working at all but with the way he's been feeling and acting I'm having a hard time hoping that it's working at all! He's in so much pain and can't hold anything down. He has a large tumor under his left arm and it's getting bigger every day. This all just breaks my heart.

I on the other hand had a mole removed in December that came back as melanoma in situ. Had another removed off my back in February that also came back as melanom in situ. Needless to say I am terrified. Has anyone had melanoma in situ? I just had a little boy this past August and I desperately want to be here to watch him grow up. I am so scared that what is happening to my dad will be me in a few years. I'm going to the dermatologist constantly and trying to stay on top of this as much as I can! My husband checks me over a couple of times a week and we are starting to take pictures. I just am so paranoid now about everything. I swear I feel like under my left arm (where my dad's big tumor is) is swollen and I freak out all the time and convince myself that I have a huge tumor just like my dad. Although I'm pretty sure this can't be the case as I only had stage 0.

Does anyone have any advice or any words of wisdom for me? I am so scared. I hate melanoma. I intend to spend the rest of my life spreading the word about this devestating disease.

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Anonymous's picture
Replies 5
Last reply 4/4/2012 - 12:08pm
Replies by: Anonymous, Janner

I have a friend who is a breast cancer survivor.  She said it was very important not to cut through the tumor, or it can spread the cells.  is this the same with an early stage melanoma?  It seems it would spread it, wouldn't it?  Online I have read numerous times where melanoma has margins involved or the tumor was only partially biopsied.  I worry that someday they may say this does indeed spread the tumor. 

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I have a friend who is a breast cancer survivor.  She said it was very important not to cut through the tumor, or it can spread the cells.  is this the same with an early stage melanoma?  It seems it would spread it, wouldn't it?  Online I have read numerous times where melanoma has margins involved or the tumor was only partially biopsied.  I worry that someday they may say this does indeed spread the tumor. 

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bikerwife's picture
Replies 4
Last reply 4/4/2012 - 9:52pm

We finished ippi march 26. Went in for a follow up from gamma knife. They treated 5 small lesions on brain they said scan in 6 weeks and it should show shrinkeage. They also wanted to look at the growths one under arn is size of a quarter. Thought that was it went home. Got a call today and they have consulted with our dr and they want to do radiation with gamma under arm. Said a new study shows radiation boost the tumors and makes them regress faster. I'm so confused at first they said 10 and know only 5. I'm so confused but lynn says we will just pray about it. Whatever God brings us to he will take us through. God bless each of you and thanks for listening.

What God leads u to he will. Lead you through

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Does anyone know someone that has had numerous dysplastic nevi and no melanoma?

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Does anyone know someone that has had numerous dysplastic nevi and no melanoma?

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jrjrjr's picture
Replies 1
Last reply 4/3/2012 - 9:16pm
Replies by: Janner

Hello.

I have had numerous dysplastic nevi removed.

I am trying to determine if I have FAMM or dysplastic nevi syndrome.

Does anyone have FAMM or dysplastic nevi syndrome?
Can you share how you were recognized with the syndrome?
Did your dermatologist recognize it?  Did your oncologist?   Did your genetic counselor?
What is your understanding of the criteria for FAMM or dysplastic nevi syndrome?
At what age where you diagnosed?

Thank you.

jrjrjr

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Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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Terra's picture
Replies 5
Last reply 4/3/2012 - 2:47pm
Replies by: LynnLuc, Erinmay22, Bubbles

We are considering going to Memorial Sloan Kettering for the Anti PD 1 trial but we are from Canada and are trying to get at least an approx cost for enrolling in a trial in the states.  I spoke with them and they are unwilling to tell us any info unless we go down for a consult.  Our Oncologist has already talked with Dr. Wolchok about us but before we commit (we are a youngish family with 3 kids under 5) we need to know the approx cost - Derek is not willing to go down and "waste" money on something they may not work so I trying to convince and need this info first.

 

Hope someone can help (he as a late responder to ipi and it worked for abotu 6 mos)

Thank-you

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triciad's picture
Replies 3
Last reply 4/3/2012 - 6:00pm
Replies by: triciad, Janner, LynnLuc

Hi Everyone,

I have a question for our local experts.  If you have a tumor, let's say a sub-q, and someone takes a biopsy of it, which opens it up but does not take it out, does that let the melanoma spread in your system?

Thanks for your help!!!

Tricia

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/3/2012 - 10:33am
Replies by: Anonymous, Janner

sorry....I can't find the long list of tips from searching the archives. Does somebody have it handy....a friends brother stated IL2 today.

Thanks!

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yoopergirl's picture
Replies 5
Last reply 4/3/2012 - 1:23pm

This week I am only taking 5 mg in the morning, and then next week nothing. I am feeling more muscle aches then normal and wondering if this is a side effects of tapering down. We are planning on leaving for 2 weeks after Easter and vacation in the Ozarks and sure don't want any side effects while we are gone, will keep in touch with my Oncologist if I need to. Just wondering how others do on getting off the steriods.

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