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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debandmike's picture
Replies 3
Last reply 3/28/2011 - 8:55pm
Replies by: ValinMtl, MichaelFL, KatyWI

Loving the website so far but could use a few guidelines on how to set up a profile. Am I setting it up for my husband who has the cancer? Or both of us?  Looking for guidance and appreciate all your replies to my email. I feel I have found a place to go and share with others who are going though the same thing my husband are going through. Thank you for welcoming us to your family.

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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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kd4cht's picture
Replies 8
Last reply 3/28/2011 - 6:22pm

I was diagnosed with a melanoma skin cancer on my abdomin back in May 2006.  I had a kidney transplant in April 1999.  When Dr.  Ollilla did surgery to remove the melanoma and 1 cm of skin around the melanoma he also removed a lympthnode.  The patholegist report showed that he got all of the melanoma and the lympthnode was negative.  Now in December 2010 my kidney doctor(Dr. Dunmire) noticed that I might be anemic.  So he did a blood test and sure enough I was very anemic.  He sent me home with stool sample cards and when I returned them they all 3 tested positive for blood in the stool.  I contacted my transplant coordinator and UNC Hospitals and she got me an appointment with the G.I. Clinic.  They examined me and set me up for an endoscopy and colonoscopy.  Those tests did not find any cancer.  At my follow up appointment I was told that the biopsies came back as normal.  So next they had me do a small bowel endoscopy.  That found something.  They had me admitted to the hospital.  They took X-rays, did a PET/CT scan, and another endosocpy.  The PET/CT scan showed a hotspot in my small intestine area.  The endosocpy did not find any cancer.  The G.I. doctors don't think they got biopsies of the right area.  So I get to have another colonoscopy, and they are going to try to get to the area from the colon to get biopsies.

The head of G.I. clinic said that melanoma could come back to the bowles, but it was rare.  After reading some on this web site I am starting to wonder how rare it is.

The doctors will not say one way or the other if it is cancer, but I have a feeling it is.  The weird thing is I have had no pain.  Just the anemia.  I imagine that I will have to have surgery on my small intestine to remove the tumor, but the doctors have not said much about that yet.

Has anyone had a similar experience?

 

Thanks,

 

Alan

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mimi0201's picture
Replies 2
Last reply 3/28/2011 - 5:00pm
Replies by: Anonymous, Tim--MRF

      Does anyone have any info on obtaining "Yervoy"?  We are in limbo and are unable to get answers on our end.  We're hear at NIH waiting to be tranferrred to Rush Chicago.  Thanks.

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MollyB's picture
Replies 12
Last reply 3/28/2011 - 4:30pm

Hello,

I am new to MRF and the Bulletin Board. I am a stage IV melanma patient with V600E mutation. For the last two years, I have had random subcutaneous lesions that have been removed by surgery but this June CT scans showed lesions in my lungs and back. Until now I have been very active and healthy. I applied for the La Roche study at Providence Cancer Center in Portland Oregon and was randomized to receive RO5185426. I started the drug August 9th and after 10 days on 960 mg/twice a day I had to stop the drug because of a raised rash over 95% of my body with swelling (especially in my face), joint pain and extreme fatigue. I waiting a deciision about whether to restart the drug and at what dosage

I am wondering what others on the study are experiencing.  Molly B

Each moment is precious, live them to the fullest

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mommydog's picture
Replies 9
Last reply 3/28/2011 - 3:18pm

My husband was diagnosed with stage VI metastatic melanoma in early February.  He has mets on his lungs, spine and liver.  After much screening he started a clinical trial yesterday at UCSF with BRAF and MEK.  For the MEK dosage he was "randomized" to receive the highest dosage allowed in the study. The doctor told us that he believes my husband is getting the best possible treatment for a horrible diagnosis.  Would anyone else like to share info/experiences with this trial? Thanks.

Deborah

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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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barns1's picture
Replies 3
Last reply 3/28/2011 - 1:51pm
Replies by: barns1, Janner, Carmon in NM

Hi, I have had two melanomas, one in 2005 ulcerated and one in 2009 non-ulcerated. I also have been diagnosed with chronic lymphocytic leukemia. What are the chances the melanoma will show somewhere else in the body because of the ulceration? I have never found any stats, thought maybe someone else has. Thank you.

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Simmy from Oz -Melbourne's picture
Replies 1
Last reply 3/28/2011 - 11:35am
Replies by: Anonymous

Hey everyone,

Ive been taking plx4032 for bout 9 weeks now, with amazing results in regards to shrinking all my tumours.  Only problem is Ive got the most severe, acne- like, extremely sore facial rash :-(    Its been like this for  5 weeks now and only seems to be getting worse.  Its in my ears, on my head, up my nose, down my throat, its crazy stuff!! The rash is all over my body but not as sore or severe as my face.   My whole body is so itchy tho, its driving me nuts! 

Has anyone else experienced this? & how have u treated it?  My oncologist gave me some tabs to treat acne and infection, and some cortsone type cream.  Hes given me a week, and if theres no improvement in my skin, he is going to drop my dosage of PLX, which Im  a bit scared to do when Im getting such a good response.  He does not seem too concerned about dropping my dose & thinks that 6 tabs a day instead of 8 will be sufficient for my body weight (53kg)

What do all you experts out there think & has anyone had this RASH problem...Will it ever GO AWAY??  

Thanks all for your wonderful kind hearted replies,

keep smiling everyone  :-)          Simmy from Oz     xo  

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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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We are looking to speak with patients diagnosed with specific types of melanoma including basil cell carcinoma to participate in a confidential paid phone/online study.

 

If they meet the study criteria and participate

They will be paid $175 for a one-hour teleconference

The discussion will be scheduled at their convenience anytime between April 7th to April 15, 2011.

 

This study is being conducted to help improve treatment and education for people living with specific types of melanoma.

 

To see if you qualify click this link  https://www.surveymonkey.com/s/JGVKBJZ

 

For additional information please contact:

Jane Walker at 888-392-5000

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The last several trials in this URL are for c-kit melanomas.

http://www.hopkinsmedicine.org/kimmel_cancer_center/centers/melanoma/cli...

I'm me, not a statistic. Praying to not be one for years yet.

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Charlie S's picture
Replies 31
Last reply 3/27/2011 - 9:48pm

Every time I have talked, called or seen  Amy B, it has always been "Amy B, how you be sweet Pea ?"" because she has always been the daughter I never had

.She always gave me either a sterling smile, upbeat optimistic look forward or shared a secret darkness that goes unsaid

No, Amy is not dead; but after speaking with Dennis on the phone miinutes ago, Amy has done every thing she can and will do what is best for her and her family.

 The possible trials are all out the window.....................(editorial)..after, I might add that they gave her hope, but full well knew her medical history in advance,  and after weeks , turned her down because of her medical history (wtf is UP with that?)

I told Dennis, and I meant it, that he has balls of steel to keep it all together right now.

He has made arrangements with Hospice so that Amy can be, as she is now, at home and as comfortable as possible.

Please keep Amy, Dennis and all of their family in your thoughts as they traverse the hills, mountains and valleys while they all reach and cling  for one more sunrise and sunset....................no matter how difficult it may be.

annnnnnnnnnnnnnnnnnnnnnd, AMY B..............how you be be sweet Pea??????

smoch

Charlie S

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Jerry from Cape Cod's picture
Replies 12
Last reply 3/27/2011 - 9:46pm

No freakin' evidence of Melanoma. NED or whatever it's all good.

The lower left lobectomy was a complete success.  The pathology is better than we had ever hoped for.  As we suspected the only need for the lobectomy was the damge caused to the airway by the tumor location.  There was evidence of necrosis and within a few months the tumor would have been gone, but their was also pneumonias collecting in the lower lobe and a swollen lymph node was putting pressure on the upper lobe.

After surgery my blood oxygen maintained at or near 100%. 

I'm at home a bit tired but Oh so Happy. 

Bonnie Lea... it's time to DANCE.

Jerry from Cape Cod

Stage IV - Ipi "Brain" Trial week 111.  That's 2 years, 7 weeks.

It's about kickin' Melanoma's butt! "Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another." in memory of NicOz

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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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