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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FormerCaregiver's picture
Replies 4
Last reply 4/12/2011 - 2:28am

If you have recently joined this forum, it would be very helpful if you
could create a brief profile so that we can quickly assess what stage you
(or the person that you are concerned about) is at.

There are some very knowledgeable people in this forum, who are more up to
date than some doctors are. However, in order for you to get the best
possible answers to your questions we really do need a basic profile in
order to help us to help you. It doesn't have to be very long at all, but
should include the following as per your profile page:

Melanoma Stats
Initial Diagnosis date
Stage at Diagnosis
Current Stage (this is important)
Depth of Primary (this is very important)

Treatment Stats
Location:
Doctor:
Treatment Center:
Clinical Trials (this is extremely important)

Thanks,
Frank

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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I have spent a significant amount of time reading as much as I can from everyone regarding the BRAF Mek trial.  Everyone has been so positive and their words have truly helped.  My mother in law has stage IV melanoma.  She has multiple tumors under the skin in her torso, legs, and two on her head.  Her scans also show a tumor in her right hip.  Her scan have indicated that the cancer has not spread to any vital organs.  She is tired and has a lot of right leg pain.  Tomorrow is a big day.  She will begin the BRAF Mek trial at the Beth Israel Hospital in Boston.  We are hoping for the best.  I am her primary care giver and I have told her about this website but she is not ready to read it.  I just wanted to say thank you to all those who are sharing their experience.  It has helped me stay knowledgeable about what to expect. 

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debandmike's picture
Replies 6
Last reply 3/28/2011 - 2:50pm

My husband was just diagnosed with Stage 4 melanoma with tumors in his lung and liver. He will start treatments on April 11th. Would love to hear from others who have tried this treatment.

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Nebr78's picture
Replies 6
Last reply 3/28/2011 - 11:33am

I have had a very good friend of mine says that he knows of two people that went somewhere in Mexico and got cured of Melanoma.  Of course you never know if you are cured.        It cost a lot of money $25,000.      This friend is not barking up a tree.   He is from Iowa and I am from Nebr.  We were in service together in Korea (1951.       Does anyone know if any of our Cancer research people have looked into this.   I would think they would and give an evaluation.     There is a fox in the chicken house somewhere.    Ipilimumab was supposed to be approved in Dec. 2010 and then in March 2011, and so far hasn't.    Is there any good reason for this.  I have 2 lumps in lung (4 cent. and 2 cent) and what I have been getting does no good.   Is reasearch really being done?????????????????

 

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Replies by: CKasper, Cynthia C, Anonymous

Does anyone know whether the HCG drops for weight loss are safe for melanoma patients?

 

HCG stands for Human Chorionic Gonadotropin, and it is produced by the female placenta. Its primary purpose is to give directions the hypothalamus gland. The hypothalamus gland, in turn, regulates your thyroid functions, fat storage and metabolic rate.

So, in a nutshell, HCG drops tells the hypothalamus to increase your metabolic rate, burn any stores of fat and reel in thyroid functions. This funnels more useable energy into the body.

I'm just curious if there is any reason not to give it a try.  I realize it may not work for me, I can deal with that.  But, I sure don't want to push my NED status.

Nancy D

Stage 3B, NED 6+ years

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EricNJill's picture
Replies 5
Last reply 3/27/2011 - 8:29pm
Replies by: Anonymous, premedy, Lori C, EricNJill, jim Breitfeller

Eric has been on the GSK BRAF/MEK Combo Trial.  The changes in his leg have been outstanding!  His tumors are shrinking rapidly.  One external tumor on his leg went from being 4 1/4 inches to less than 2 inches and his leg is actually normal size for the internal tumors shrinking.

What is confusing for me is that he has new enlarged tumors around his heart and new non-calcified nodules in his lungs.  Why would the treatment work in his leg and not the heart and lungs?  His Oncologist said that if he hadn't obviously had response in his leg they probably would have stopped the treatment.

Thanks for any help.  JillNEric in OH

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Rocklove's picture
Replies 5
Last reply 3/27/2011 - 12:31pm

Hi All,

I posted earlier in March I failed IPI and Dr. Weber reccommened I start a round of carboplatinum/taxol and get to MD Anderson. I did the round of carboplatinum 3 weeks ago and have an appt with Dr. Falchook on Tues morning. I hope he has something for me that works.

If anyone is going to be at MD Anderson the next week or two it would be a pleasure to meet up with you. They gave me the blanket two weeks for testing etc. But everyone I have talked to said it does not take that long.

I'll try to keep you posted on what Dr. Falchook reccommends.

Thanks for all the prayers and positive thoughts.

Rocky (Stage IV Liver Mets)

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HarryObrian's picture
Replies 1
Last reply 3/30/2011 - 1:21am
Replies by: JerryfromFauq

One of the interesting things to note about this article "http://www.businessweek.com/lifestyle/content/healthday/651283.html" is the mention of the molecule CTLA-4 and it's role in suppressing the immune system. For years the supplements resveratrol and curcumin have been touted anecdotally as supplements for cancer patients, with curcumin specifically linked to aide in melanoma suppression, "http://health.usnews.com/usnews/health/briefs/cancer/hb050711a.htm". However it has been found that both resveratrol and curcumin are immunosuppressants and upregulate CTLA-4,"http://www.ncbi.nlm.nih.gov/pubmed/17177975".

These conflicting articles, both from 'authoritative' sources, either demonstrate the still unknowns of medicine or they each serve their own unexposed commercial purpose and raise questions similar to "Why would a melanoma research hospital find that curcumin, a known CTLA-4 upregulator, actually suppresses melanoma while the drug industry's friend, the FDA, approves a drug, with serious side effects, that is designed to interfere with CTLA-4?". While CTLA-4 is obviously an immunosuppressant is it really the true culprit of melanoma's progression? 

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Anonymous's picture
Replies 3
Last reply 3/27/2011 - 9:16pm
Replies by: Jim M., Lisa13

I am reading that Yervoy is approved for 'late stage melanoma.'  Does anyone know if this includes any stage 3c patients?  Could it be perscribed (maybe not paid for by insurance) to stage 3 patients? 

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steelergirl's picture
Replies 2
Last reply 3/27/2011 - 8:51am
Replies by: MichaelFL, Anonymous

 I saw in today's newsaper, about the new drug for metastatic mealnoma called, Yervoy.  Has anybody on here, heard about it before?  Does anybody know how long the drug is given and side effects that goes with it? 

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CKasper's picture
Replies 2
Last reply 3/27/2011 - 1:57am
Replies by: CKasper, Charlie S

I first contracted melanoma in 1984, I am currently staged IIIB, had surgery to remove tumor, and lymph nodes, high dose interferon therapy.

Currently in remission.  I have had many other complications:  Fluid in the heart and lungs, constant rash on palms of hands and feet then spreads to the rest of my body, cataracts, swelling of joints, candida in my digestive tract...still here after 27 years...has anyone else had these complications?

 

C Kasper

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Replies by: jim Breitfeller

 

Thursday, January 6, 2011BMS denies any wrongdoing. Is this what we have to look forward to with Yervoy (Ipililumab) Melanoma..Jim Breitfeller

Commentary:
BMS denies any wrong doing, but this was not it's first offence and may not be it's last. As the patent waterfall nears close with Plavix, is BMS trying to make up for it's loss of revenue?
Mesothelioma and Cancer Patients Who Received Certain Chemotherapy Drugs May be Eligible for Reimbursement
 

http://blog.mesotheliomahelp.net/2011/01/mesothelioma-and-cancer-patients-who-received-certain-chemotherapy-drugs-may-be-eligible-for-reimbursement.asp

I am anticipating that BMS will try to inflat the cost of production of Ipilimumab (Yervoy) and try to pass it along to the patients that desperately need it. It is a shame that the drug companies have come down to greed and screw the consumer. BMS needs desperately to clean house again and go through some Ethics training, Big time!!!

I am all for paying a fair price, but not to get gouged to the point that the insurance won't pay and pass the copay onto the patients. It is not right.

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Anonymous's picture
Anonymous
Replies 6
Last reply 3/27/2011 - 8:41pm

I had some soft tissue removed from my left groin on 2/23/11 because I had discovered a lump. It came back melanoma. No sight has been found. I had a pet scan, ct scans of my abdomen, pelvis, brain and chest done 2 weeks ago. No cancer showed up anywhere. My doctor wants to do a  superficial dissection of my lymph nodes. Just wondering if anyone of these cicumstances and a normal practice?

I Love Jesus

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Anonymous's picture
Replies 4
Last reply 3/27/2011 - 2:40pm
Replies by: Anonymous, CKasper, lhaley, EmilyandMike

Hi All,

For what it is worth, I contacted my Blue Shield of CA (spoke to Manager over Benefits) regarding coverage to pay for IPI. I was told that the fact FDA approved IPI there was no guarantee the Blue Shield would pay for the drug. Patients would have to get a pre-service authoriztion which entails reviewing patients history  then Blue Shield would make a decision whether or not to pay for the drug. 

Well, the review of patient's history is a reasonable process to determine coverage on IPI. But then I was told that IPI is so new, that the decision to pay for IPI was very low because the drug was so NEW & the drug is considered experimental/investigatory at this stage...not enough patients took the drug on the clinical trials

For those now on the drug under compassionate use,your chances are better to get payment for IPI because you are in the middle of treatment. For those, hoping to start IPI, it will be an up hill battle with Blue Shield.

I asked if IPI covered under Medicare would that make a difference that Blue Shield would pay for IPI. The manager told me "NO". For those not  covered under Medicare, our chances of getting IPI paid for by insurance could be problematic.

I read another post on MPIP that said, maybe we were better off having IPI under compassionate use because now it is up to insurance companier whether or not to pay for IPI. I think that is a worse situation than trying to get IPI under compassionate use. Now our fate is up to the insurance companies. Life is not easy.

Thanks for taking the time toreadmy post

Douglas

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