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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Frank Two's picture
Replies 15
Last reply 11/19/2014 - 1:22am

My husband started Taf/Mek combo six weeks ago. He had no side effects for the first four weeks. For the past 10-14 days fatigue set in. He can no longer walk upstairs. We've been to the oncologist twice in as many days.  The Dr ordered blood work on Tuesday and everything was normal. She also did a simple muscle test during his visit and said his muscles were fine. That was this past Tuesday. On Thursday he had fever and chills and I called the oncology RN ( Kaiser) to get a message to his onco and advise of what to do. I finally got a call from the Oncology Pharmacist and was told fever and chills are common on the combo and give him Tylenol. At that time I was told that fatigue is also a common side effect and he should take Percocet if he can't climb stairs. Ten minutes after that call the oncologist RN called to let me know that if any other questions arise I should first call his primary care physician. WHAT?  My husband's quality of life has gone downhill quickly. I'm new to all of this and I'm very confused, my husband is upset and I think it's wrong. I would think the oncologist should oversee his health and order further tests at this point. Is this normal?  I would appreciate any input. 

We can do this!  Take time to laugh!

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/18/2014 - 12:05pm

Hi I would first like to say thank you for taking the time reading this and offering any advise. 

Some back ground 

I am 33 female married mother of three. I grew up in southwest arizona. I am Caucasian with dark hair and eyes always tanned easy ALWAYS in the sun. When I was 16 I had a horrible sunburn I was fire red blistered and sick for days again when I was 18 (young and stupid) well my father was diagnossed with melanoma on his back around when I was 16. He also was diagnossed with non Hodgkin's lymphoma when I was 18 and passed away when I was 19. My mother passes away when I was 21 from a heart issues and AIDS (which my father passed on to her) now I have a older brother who has had 3 basil cell and 1 melanoma removed. I don't have any other family besides my brother there are no grandparents aunts or uncles on either side alive so I have no clue on any of my family history. Fast forward to now a year ago I had a itchy raised mole I had since I could remember removed which the dermatologist said was "precancerous" and I need to be seen 6 months. I just had 5 spots removed with shave biopsy a week ago. I am trying to stay calm and wait for the phone call. But I am curios if having 2 close family members and a precancerous mole also all those years in the sun the bad burns and tanning beds should I always think the worse? I also have a high level of anxiety because of my lack of family history/ support. 

Thank you for reading and I am sorry it's long I know I have not been diagnosed, but I just thought this place would be the best of some advise or information. Thank you again 

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arthurjedi007's picture
Replies 17
Last reply 11/18/2014 - 6:00am

I think I eat a lot but for the past couple months I lose about a pound every 4 or 5 days. It's starting to add up. I'm on Keytruda, Xgeva and just started taking oxycodone for my leg and hip pain. Before the disease I was 172. Just a couple months ago I was 167. But now I'm 159.

This is what I typically eat in a day:

breakfast - scrambled egg with green, red, yellow and orange bell peppers. onions, mushrooms, ham, tomato, garlic, tumeric in it.  glass of almond milk. glass of orange juice.

morning snack - bananna and juice like kale blazer

dinner - 2 chicken breasts in cream of mushroom sauce, slice of 12 grain bread, sweet potatoes, green beans, juice like daily greens

afternoon snack - bananna, walnuts and brazil nuts, juice like green machine

supper - large pork chop, baked potato, salad, decaf green tea

evening snack - apple, bowl of post shredded wheat and bran with almond milk

2 to 3 bottles of water throughout the day

 

That's just what I had yesterday and it changes to sometimes steak and other stuff but pretty much similar.

I'm not very active especially since my knee and hip hurting prevents me from walking much.

 

I just can't figure out why I'm still losing weight. Any ideas?

Artie

 

 

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chowmene's picture
Replies 5
Last reply 11/18/2014 - 2:17am

should i consider getting a blood test. my breslow lvl was 0.40 mm, clark lvl 2?

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Anonymous's picture
Replies 5
Last reply 11/17/2014 - 9:09pm
Replies by: JerryfromFauq, Frank Two, JoshF, Anonymous, casagrayson

My brother was diagnosed with stage 4 melanonma on 8.22.14.  No primary.  He just completed his second round of IL2 at Providenve in Portland, Oregon and is awaiting a scan to find out if it is working.  This waiting is proving to be harder than the treatment itslef... Anxiety is high and any positive/ success stories for young males who have dealt with this will help our family get through this next week.  He is an otherwise healthy 37 year old male.  Started to have stomach/side discomfort in August 2014 and found out it was due to melanoma.  He does also have lesions on the pancreas and his eyes.   No brain mets.  Not ocular melanoma. Can anybody relate and share? 

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Anonymous's picture
Anonymous
Replies 8
Last reply 11/17/2014 - 7:32pm

We have gotten his fever down. But now he is in bed all the time he stopped eating and moves his legs all night in his sleep. I got him pain meds yesterday. But is this normal. In three days time he was up to always in bed. He is forgetting things but i dont know if its the yervoy or that hes sleepy. Im getting vary worrired the longest time hes been up is maybe 5 min. He has had one dose of yervoy. Is cancer is in brain lungs bones. Any thoughts? Thanks

Crystale sellers

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adriana cooper's picture
Replies 7
Last reply 11/17/2014 - 12:29pm
Replies by: RJoeyB, adriana cooper, Tim--MRF, Anonymous, Bubbles

Post Ipi scan last month demonstrated some growth in existing areas of lungs and arm as well as some new ones not previously noted. Over the last 4-5 weeks Adriana has felt things are still advancing, Dr. agrees and has scheduled new scans in the next week or so with the plan to start Zelboraf for a few weeks then on to Keytruda ASAP although he is asking the insurance to go straight to Keytruda and skip the Zel. He wants to hold back Taf/Mek to be used later if tumors get out of hand. Some comments on this plan are welcome. My question (if some one could address) is can Taf/Mek be used after Zel? The info here in the MRF website suggests no on the targeted therapy section of the melanoma treatment page. Or should she start with Taf/Mek and then can she go back to it at a later time if needed again. I know there was some previous discussion of going back on but I can't seem to find it.

Not trying to second guess Dr. But he seems to think it's possible to skip the BRAF at this time but our research has only indicated that is not possible at this time.

TIA

Rob- Adriana's boyfriend

Adriana

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arthurjedi007's picture
Replies 27
Last reply 11/17/2014 - 12:40am

Just got a call from my nurse a little while ago. The bad report I got last week was comparing the 11/3 scan to the 4/23 scan which I knew that's what they did. But they got my 8/13 scan from Mayo now and compared it.

Basically no new stuff and "only mild growth". Awesome :)

The main growth they are concerned about is the left scapula shoulder tumor which is already huge just not as much growth as they thought. Might do radiation or surgery in the future but not right now.

I was too dumbfounded to ask but I assume with a pretty good report like that I'll save TIL until some future date. I guess I'll still try to make the Chicago trip just to see what they say but not sure with my knee acting like it is.

What a relief. Not as good a report as some but it means Keytruda is kicking this stupid disease a lot better than they thought.

Thanks everyone.

Artie

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Wayne drinks several glasses of soda water a week.   I don't care what anybody says.......his first tumor shrunk on it from 1.9 to 1.1 in two weeks before we ever saw Oncologist in Houston and began treatment.     It neutralizs acid in the body which is a feeding ground for cancer.   Lots on YOUTUBE also.   The only drawback is too much for kidneys and bladder...and that's what they are working on now - HOW MUCH to take.    Wayne goes by his alkaline strips.   They say it IS shrinking tumors in rats.    

JUST SAYIN'....................

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Jewel's picture
Replies 13
Last reply 11/16/2014 - 1:50am

My husband will be starting Yervoy in the next couple weeks. Of course my main concerns are to be on the outlook for any and all side effects. Can you please share with me your experiences and the things you may have had in the house to help combat them. Trying to be as best prepared as I can. Most importantly did it stable your disease? Thank you all so much for your help.

Jewel

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democat's picture
Replies 4
Last reply 11/15/2014 - 11:28pm

Does anyone have experience with Kaiser So. Cal.? Specifically Drs. Sherry Hsu and Helen Moon?  Also, has anyone been able to get Kaiser to pay for a second opinion outside of Kaiser>

 

Roxanne

Roxanne

Stage IIIa/IIIb

since 1/2013

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angtom's picture
Replies 10
Last reply 11/15/2014 - 2:56am
Replies by: RJoeyB, Anonymous, sis1971, MelanomaAnkara, angtom, Patina, ecc26, WITom

I have a question my husband had his first ipi treatment 2 weeks ago he is stage 4 melanoma braf neg mets in lung and trunk. He had his tumor harvested yesterday for the TIL trial  at moffitt. We were surprised at how much the tumors had shrunk as was the doctors, the original spot to harvest the tumor which was the largest was almost to small now to get a good sample they wanted 2 cm but said 1 cm would do so they also took another sample from his abdominal wall which had shrunk also has anyone else had this kind of reaction to ipi after first dose?

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CHD's picture
Replies 5
Last reply 11/14/2014 - 11:09pm
Replies by: RJoeyB, CHD, Anonymous

One of you awesome folks posted a link to some informative You Tube videos in one of these posts in the last few weeks, which I forgot to write down, and I have been searching for that post to no avail.  Does anyone remember where that was, or could you re-link to those videos here, or in fact if you know of other informative videos, I'd love to hear about them.  I am interested in videos ranging all the way from the basics through the more complicated treatment options.  

Thanks so much!

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StephyD83's picture
Replies 4
Last reply 11/14/2014 - 7:14pm
Replies by: StephyD83, Janner

Hi Everyone--

I was Dx with Melanoma In Situ in March 2014 & since have been dealing with enlarged lymp nides etc. In Augest 2014 I had a shave biopsy of a mole on my lower back that I had a long time but became raised suddenly. It came back as begin compound nevus with congenital features. About 1 month later a black dot appreaed in the center of the scar now it is about 1/4 of the way back covering the scar & is very black & itches really bad. It was a large mole 1.6 x. 9 x.1. Should I be concerned?

Thanks!

Stephanie

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