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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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 1/2  years NED Completed 1 year interferon 2009.  God is Good.

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jenniperry's picture
Replies 15
Last reply 3/7/2011 - 5:41pm

Haven't posted in awhile. Brian went in for IL2 Dec.14th due to no trial openings of other treatments. While having IL2 they did an MRI since one of his eyes wasn't responding to light correctly. They then told us he has leptomeningeal disease, and his liver was very enlarged and his abdomen was distended from fluid. We were in the hospital until Dec. 21st and went home with the words, he has a few weeks.... We are devastated. He has declined in the five weeks since and now vomits a lot and his liver is failing. The doctor said they couldn't do whole brain radiation because it would just torture him and then the liver would kill him. He's lost about 15 lbs, some he has gained in fluid, so it's more weight than the 15lbs most likely. Hospice has been coming twice a week. He sleeps most of the day and is awake anywhere from 5 to 7hours, a lot of which he feels really bad. Pain meds are working better now. We are just trying to keep him comfortable and say all we can while there is still time. He is only 41 and is so sad to leave as we are to lose him. We do trust he is safe in the hands of God, as are we. Still praying for a miracle.

Cherish every day you have.

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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

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MRFUser2011's picture
Replies 13
Last reply 3/6/2011 - 10:11pm

I am scheduled for VATs next Tuesday to remove a 2.1 cm lung nodule in my lower right lobe.  CT and PET/CT confirm it has doubled in size in 3 months and has high FDG uptake.  I know this surgery can be very straight forward and if all goes well, I can expect a fairly quick recovery.  I would appreciate positive feedback regarding things that might help this procedure go better or make me more prepared (please don't scare me!)  

So if you have had VATs and there is anything that you wished you had known ahead of time because it would have helped you pre or post op, please let me know.  Thanks!

Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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

Insert Generic Inspirational Motto Here

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Replies by: Rocklove, jbergman

Hello Everyone,

Bernhard just completed his second round of leukine on March 1.  A blood test taken to monitor his potassium level (high) showed something new = a creatinine level of 5.85; it was 1.3 January 19, before he started round one of leukine.  This creatinine level indicates possible kidney failure, B is in the hospital now getting the kidneys hydrated, and the condition reversed, we hope.  All doctors have stopped the two medications B has taken for years for hypertension and the next round of leukine may be delayed until more is known. 

So, does anyone have any experience with leukine and either of these two drugs, Lisinopril/Zestril, or Hydrochlorothiazid?  The doctors are stumped.

Thanks for any advice, experiences.

Julia

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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.

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Carmon in NM's picture
Replies 5
Last reply 3/5/2011 - 10:45pm

The clinical drug trial I'm on that is working so well for me is INST 0903: Phase II of Carboplatin,Paclitaxel, and Temozolomide

I was so happy when the protocol nurse told me that everyone at UNM on this trial has responded as well as I have. It was wonderful to post some good news on here, especially with so many newly diagnosed folks signing on. Except for those people with a known gene mutation, no one ever seems to know just why one person responds to a drug combo and the next one doesn't . Having 100% of the people here in this trial responding is pretty exciting! This combo is too new to have any idea about recurrance rates but I did find some info on the Phase I trial that set the dosage and one woman has remained NED for four years now.

I'm also very happy that I only have one more infusion to go on March 14th! I'll have a consultation with the oncology surgeon then to talk about how she'll go about removing my adrenal gland and to set a date for that surgery. My husband commented this morning on the phone that I'm getting quite a collection of surgical scars. I told him it was a good thing that there is at least one man out there who 'digs women with scars'!

Wishing you all out there equally happy results in whatever treatments you are in progress with! Carmon in NM

Carmon in NM: Stage IIIB 9/2008; Stage IV 6/2010 with brain and adrenal mets; NED since 4/13/2011. It’s not what happens to you, but how you react to it that matters. ~ Epictetus

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LynnLuc's picture
Replies 4
Last reply 3/5/2011 - 10:36pm

I have blood work at 745- see Dr Weber  around 8 and do the last regular cycle in my trial- tah dah I am now going on to my 12 month of Stage 4 melanoma NED...oh NED is my best buddy!

I get scans and apheresis next week  then I guess every 3 months I will get scans, blood work and booster IV of  Anti PD-1 for 2 years if I remain NED.

wow...I also returned to work and nearing my 3rd week -it is still so exhausting but hoping as I get farther awhile from the trial meds the less tired I will be...

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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Jim M.'s picture
Replies 11
Last reply 3/5/2011 - 9:17pm

Hi everyone,

 This has been one of those weird rollercoaster weeks (2 weeks) for medical appts. First something suspicious appeared in the ileum, the end of the small intestine. Then I did the small bowel follow though. I drank the barium contrast and had x-rays of that area. Nothing appeared. It was completely normal and the radiology doc. showed and explained the x-rays to me. I thought maybe this would be satisfactory to Dr. Weber. Wrong! He said sometimes masses hide in the walls of the intestine and also hide due to the folds in the intestine. He mentioned intussuseption is possible. I read that's when one bowel slides into the other. Apparently the small bowel follow through isn't fool proof.

 The next step is a PET Scan which should give a difinitive answer. I'm scheduled for the scan this Wed. early in the morning. I'm glad Dr. Weber is being proactive. I got permission th discontinue Alendronate as the bloating, and abdominal pain are side effects of this drug.

 I 'd appreciate  your prayers. I will post when I know something.

 God Bless to all,

 Jim M.

 Stage 3C

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dennest's picture
Replies 15
Last reply 3/5/2011 - 8:19pm

Hello,

I was diagnosed back in April with a stage 1 melanoma. My site was .35mm. I had a wide excision and no further treatment. I know that I was incredibly lucky to have caught it so early, but now that some time has gone by, I feel like I should have done more even though further treatment is not recommended.

My husband and I are looking to have another child, and I am finding it extremely hard to decide if we should proceed with our family plan. Of course most doctors say we should wait for at least two years before getting pregnant. Has anyone had a similar experience with this? If so, how long did you wait, did your pregnancy go well, and did you have any recurrances, etc?

Thank you.

 DEnnest

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KellieSue's picture
Replies 1
Last reply 3/5/2011 - 8:16pm
Replies by: Fen

Just started B-RAF last week.

I of course will speak to my oncologist next week about this but I was wondering if anyone knows if having elective surgery while on B-RAF would be allowed.  I've read through all the paperwork and it doesn't say anything in there.

I guess it's not really elective, except for the timing. I would be electing to have it done now if I could, but I'm not looking to get butt cheek implants for vanity sake.

I had a unilateral mastecomy due to melanoma in the breast back in 2007, I had one follow up surgery in 2009 to replace the tissue expander with a real implant. I've never finished my reconstruction. I would like to make the reconstructed side look "real" and make the other side match, if you know what I mean!  :D

I imagine it would be a fairly simple surgery(from what I remember my plastic surgeon telling me at the time) and I know it's covered under my insurance as it's part of the reconstruction process I started years ago and fairly simple recovery(at least compared to some of my surgeries).

Any thoughts?

 

Kellie(from Iowa) Stage IV on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

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Doug-Pepper's picture
Replies 3
Last reply 3/5/2011 - 6:51pm

I am praying for so many that are affected by this horrible disease! We are still juicing, eating more natural foods & taking supplements. Started a bible study on "The Seven Pillars of Health" by Don Colbert. Anyone have any suggestions on Alkaline water filters? Thanks, Pepper.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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emilypen's picture
Replies 6
Last reply 3/5/2011 - 3:38pm
Replies by: KellieSue, P Brown, Anonymous, tennisgirl, mrsmarilyn

Hi All,

My hubby was on a MEK/P13k trial and after having an adverse side effect he was taken off the study. One of the tumours in his back has grown too close to his spine so its surgery on Tuesday, followed by some radiation and then on to PLX-4032. He got the dacarbazine arm of the study last summer so with expanded access he is allowed to get on the Roche B-Raf drug right away.

So what I'm wondering is how many people on this board are on the drug now and for how long? and if you failed off B-RAF how long were you on the drug?

We were hoping for a B-RAF/IPI combo trial but they don't have that set up yet, our onc says he expects it soon.

Thanks,

Emily

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Hello-With 7 tumors including 1 on lung, my brother was put on Braf/GSK 9 months ago.  All have dissapeared except one in pelvic area-which grew and therefore, he failed Braf according to trial standards.  So his Dr. at Sara Cannon put him on GSK Braf/MEK combo.  All PET was clear except the one reamining stubborn tumor and we are hoping this Braf/MEK will knock it out.  No side effects - he feels great, but once again so mysterious why all six were eliminated and yet one still remains.  We are so close!

Best of luck to all and feel free to contact direct.

ThinkSpringSnowbirds!!!

MrsMarilyn from Michigan

sister of Gary (from Florida stage IV)

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