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
Anonymous
Replies 13
Last reply 6/18/2011 - 1:11am

I am sure this topic has been discussed before but was curious on folks thoughts.  I was recently diagnosed with Melanoma and have been practicing sun safety but this past weekend I noticed while out in the hot sun (I've been trying to still live my life) that I missed a few spots with sun screen and have a few red spots where I got too much sun.  Ugh, I've been so careful about putting on hats, sun glasses, sunscreen, layers etc.  Should I be totally freaking out that I am just fueling melanoma (even though last scans showed everything was clear?).

Thoughts on this? 

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dani_elle's picture
Replies 14
Last reply 3/25/2014 - 2:34pm

Hello everyone
Just thought i would share my husbands story with you all. We really dont know what to except, this is all still so new tu us.
Let me begin by saying.. My husband has always been pretty healthy. I can honestly say i have only seen him come down with any kind of illness about 3 or 4 times in 7 years! Well it all started about 6 years ago he developed a colorless callus on his left inner heel. He noticed it growing and did get it checked out 2 different times. Drs just ordered x-rays and said it was a callus that could be caused by his work boots ( Hes a cement worker.)
so years past by and the "callus" kept growing and started to bleed and have a smelly discharge. This is when i started to get worried. My husband was always self conscious about this "callus" and would NEVER let me see it!!! it was always covered with neosporin and a bandaid.

So fast foward to march 2011. A dermotologist did a biopsy and on april 18 he was diagnosed with melanoma. We were told that amputation was most likely going to be the plan of care. Later that day i recieved a call from another dermatologist who explained the disease to me & advised me to begin making funeral arrangements and prepare his will !!!!! ofcourse i broke down, i was still in shock... But i managed to put on a straight face.. I had to! We have a 4 year old daughter who i refuse to raise on my own!!!! shes daddys little girl & hes my other half. I wasnt about to start planning a funeral for my 26 year old husband!!!!!

So then next step we talked to an oncologist who answered some of our questions, referred us to a surgeon, & Ordered a CT scan. The ct scan came back normal, But it wasnt until later when i requested records
where i read about an abnormal ct scan "lung nodule" I dont think theres anything normal about that! I asked the Dr to explain the ct scan and she said sometimes these nodules arent cancerous. Is this trueeee?!?!? well she wants to repeat the ct scan in november.

On May 24th my husband Miguel had a wide local excision and a sentinal lymph node biopsy. His wound was left opened and hes got a wound vac over it. A nurse comes out 3 times a week for dressing changes. He didnt tolerate the negative pressure vac very well, the dressing changes were especially painful. Ive never in my life seen a man in so much pain before!!!

We went back to the surgeons for his weekly checkup where the pathology report was given to us. It came back he had a breslow thickness of 19mm & clark level V. The margins were free of cancer so that was a relief.. Atleast his foot can b saved!! Although Melanoma cells were found in 2 of 3 lymph nodes. From what ive read this is not good at all, but i believe in GOD and nothing is impossible for him. The next step is his lymph node dissection which is scheduled for the 21st or the 1st, whichever date is available. Hes also going to have reconstruction surgery on his heel the same day. Im hoping for the best!
I was also wondering what your opinions were on aloe vera. Alot of people reccomend it, so my husband had been drinking aloe vera gel along with supplements from Forever Living Products.

Thanks for reading!
Danielle <3

-Dont Tell GOD How big your storm is, tell your storm how big your GOD is!

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FormerCaregiver's picture
Replies 4
Last reply 6/13/2011 - 8:04pm

Few would doubt that high quality sleep of sufficient duration is essential for good
health. As the amount of sleep that one needs varies from person to person, it is
difficult to say what the optimum amount is for each individual. It seems that most people
need between 6 and 8 hours, but a small number of individuals are apparently happy with
just a few hours per night.

If we are sleep deprived for an extended period of time, our physical and mental sense of
wellbeing will tend to suffer. Sleep becomes even more important when one is trying to
deal with any serious illness such as melanoma.

Although there are many types of sleeping pills that a doctor can prescribe, I feel that
it is best to avoid these medications if possible.

Many people seem to have very active brains that are unable to relax, because there
"always seems to be something happening". If this is a problem, then things like very
gentle exercise and meditation can help.

Good nutrition is far more important than many people realise. Foods that contain high
levels of vitamin B and essential fatty acids seem to help when one is feeling stressed or
anxious.

Here is a site that has a lot of info on this topic:
http://www.helpguide.org/life/sleep_tips.htm

I look forward to reading your comments on all this.

Best wishes

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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ShariC's picture
Replies 9
Last reply 6/14/2011 - 2:28pm

All - Thanks for the continued support.  The last week I've been very tired - hopefully its the chemo working..but, who knows.  My Asitis (the fluid in the abdomen) is manageable but uncomfortable.  I LOOK like I'm 8 months pregnant!  How strange to be feeling like its birth, when its not!  We won't know until another week if the chemo worked to beat this back, a bit.  Its just a waiting and comfort game right now.  My son, Eli, is AMAZING.  He's doing very well and my Mom is here (his Nana!) for as long as it takes.  My sisters visited for the weekend.  We had a very good time listening to music from our youth (and Smothers Brothers - love them!).  So, things are ok right now...I'm very tired and suspect my blood work tomorrow will show I need a transfusion.  Don't know if this downhill is Chemo...or the big downhill.  Just waiting and trying to enjoy every minute of every day...even though I can't do much. 

Thanks for ALL of your wonderful support and kind words and thoughts and prayers.  Its nice knowing you're all out there and that many of you are stil beating this.  Oh...don't know if I shared I'm BRAF neg...they're triple checking, tho....we'll see. 

Keep positive and keep fighting.  I firmly believe the body KNOWS when its time to stop fighting....I haven't gotten there yet...but, I'm not afraid to get there if necessary.  I will just listen to my body and implore it to handle this "load" - this "tumor burden" as best as possible for everybody concerned.  We'll see.  I'll try to post more when I know more (PET on the 22nd)...results a few days after.  - Shari

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awg's picture
Replies 6
Last reply 6/18/2011 - 5:26pm
Replies by: jimjoeb, Melanoma Mom, Anonymous, awg, Janis B., lhaley

Hello,

My surgeon mentioned a new(er) Interferon protocol that was different from the 30 day high does followed by 3 weekly injections for 11 months. The protocol was/is 1 weekly injection that has been used(studied in melanoma) for up to 5 years. I do not have any additional details on dose or anything else at this time.

I was wondering if anyone has any information on this protocol. If it is new I like the ideal of 1 weekly injection vs 3 but that may depend on the dose. It sounds similar to an MS protocol to me.

I am scheduled to see my hemo-onc  for my first visit on July 1.

 

Thank you,

 

Allen

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jimjoeb's picture
Replies 3
Last reply 6/13/2011 - 11:56am
Replies by: jimjoeb, Lisa13, ValinMtl

Hi everyone!

Well I'm home from the hospital and have had my first homecare visit. The surgery (left inguinal dissection) went well. My surgeon only took the superficial nodes because there was no macro evidence of cancer. She was also able to save the vein. Thank you, God, for a skilled surgeon!

I feel well but need to remember my energy will have its limitations for a while. I have one drain that I am able to look after myself. The goal is 20 cc per day for two days in a row.

From a pathology point of view, I expect the results by June 17 from two new biopsies by my dermatologist took on June 8. There may be a provisional pathology report around the same time from the surgery and another biopsy taken by the surgeon in a different spot while I was under general anesthetic. I expect the final pathology report from the surgery the week of June 27th.

In the meantime, I'm focusing, or trying to, on recovery from the surgery and in doing all of the right things for lymphedema risk management. My surgeon has referred me to a physiotherapist who specializes in CDT. I hope to meet with that team this week. In the interim, I'm wearing a compression stocking on both legs and keeping the left leg elevated as instructed by the hospital medical team.

So far so good and I am determined to maintain my optimism.

Be Not Afraid-God is with you always Stage IIIa

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dawn dion's picture
Replies 21
Last reply 10/17/2011 - 12:40pm

I know lots of folks here take curcumin and I have been considering taking it myself.  Anyone know how much a person should be taking?    Thanks for the info.

Hugs and Smiles

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Lisa13's picture
Replies 6
Last reply 6/15/2011 - 3:35am

Even though none of my lung nodules have been biopsied to confirm melanoma, is the fact that some of them have grown since April make it pretty clear?  The largest is 11mm and the smallest is 3mm. The rest of them don't have measurements - just "tiny nodule" or "other nodules scattered within the right middle lobe do appear larger".  I guess what I"m getting at is even though I don't doubt this is melanoma, maybe not all 15 nodules are.  Once I get going on Decarbazine, I'll be scanned at 2 weeks and if not working, into IPI. 

Lisa

 

Many impossible things have been accomplished for those who refuse to quit

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LynnLuc's picture
Replies 5
Last reply 6/12/2011 - 1:10pm
Replies by: MichaelFL, Anonymous, LynnLuc

http://www.biooncology.com/research-education/braf/metastatic-melanoma/solid-tumors/index.htmlOncogenic BRAF expression is associated with poor prognosis in metastatic melanoma and other solid tumors

The molecular signature of a tumor is likely to influence patient prognosis. While the mutations that result in metastatic melanoma are heterogeneous and can involve other proteins, overactive RAS-RAF signaling is significantly associated with a poorer prognosis (Figure 3). Specifically, the presence of a BRAF mutation in metastatic melanoma is associated with poorer prognosis from time of first metastasis or time from first resected metastasis. Other mutations, such as NRAS, are also more common in this disease state.28-30

In addition to melanoma, BRAF mutational status is associated with a poor prognosis in other cancers. The presence of mutated BRAF is a powerful prognostic factor for advanced and recurrent colorectal cancer. BRAFV600E is associated with a worse prognosis in stage II and stage III colon cancer independently of disease stage and therapy. In papillary thyroid cancer, the BRAFV600E mutation is associated with an increased risk of nodal recurrence requiring re-operative surgery.28,31,32

 

Influence of BRAF or NRAS mutation on overall survival (OS). OS was measured from removal of primary tumor or the respective metastasis to time of death. Kaplan-Meier (KM) curves for OS of metastases stratified for absence (purple line) or presence (blue line) of either a BRAF or an NRAS mutation .29

Adapted with permission of Medknow Publications and Media PVT Ltd., Houben et al. J Carcinog. 2004;3:6; permission conveyed through Copyright Clearance Center, Inc.

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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Janis B.'s picture
Replies 4
Last reply 6/17/2011 - 8:32pm
Replies by: Janis B., nicoli, MichaelFL

I had my second Oncovex injection a week and a half ago.  Now experiencing hair loss.  Anyone know anything about this?  It's not listed as a side effect, but then, it's a trial drug, so who knows.  Thanks for any and all feedback (including sympathy - 2nd go-around for hair loss :-)

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Replies by: King, LynnLuc, lhaley, Teodora

Just had a clear PET/CT scan.  That puts me a 2.5 years since last surgery.

 

Chris Parsons

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/17/2011 - 10:38pm
Replies by: Gene_S, TracyLee

Hi Gene,

 

I have been off the board traveling so I have lost track of many people's progress on MPIP.

If I recall you had surgery weeks ago, how are you doing & are you having any form of treatment? If so, where.

Looking forward to your update.

Best to you.

Douglas

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Gene_S's picture
Replies 4
Last reply 6/12/2011 - 2:02am
Replies by: bcl, Gene_S, LynnLuc, Anonymous

Here is a good site for anyone interested in getting their blood tested,see

http://www.lef.org/Vitamins-Supplements/Blood-Tests/Blood-Tests.htm

You can get a "free" trial membership here, see

 
Here is one test that I suggest every cancer patient should be tested for , see
 
 
For more info on Vitamin D, see
 
 
Their tests are usually done at a local Lab Corps testing center. I have personally used them and I am very happy with their services.
 
Best Wishes,
Gene
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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Carol Taylor's picture
Replies 11
Last reply 6/12/2011 - 7:42pm

Treatment Diaries posted this on facebook, and this is a link to their website. Unbelievable service, I checked them out as I' sure Treatment Diaries did.

http://cleaningforareason.org/index.html

This is what they say,

"Fighting cancer is difficult enough, but living with it is even tougher - and that's where the Cleaning for A Reason Foundation steps in.  This  nonprofit offers free professional housecleaning, and maid services to improve the lives of women undergoing treatment for cancer - any type of cancer."

They have a link to find the service closest to you.

Grace and peace,

Carol

Life's short. Eat dessert first. http://letsgivethanks.blogspot.com/2011/03/let-sun-shine.html http://www.facebook.com/MelanomaPrayerCenter http://www.facebook.com/melanomagriefchapel (This blog post contains links to my story).

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