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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out4air's picture
Replies 4
Last reply 8/3/2013 - 1:11pm

My husband has had quite a time adjusting to Zelboraf. Here is sequence of events:

- started Zelboraf on 5/20 960 mg am and 960 mg pm
- on 5/22 started with high fever and chills
-taken off Z for 3 days and put on 20 mg Perdnisone for 1week
-started Z on 5/26 at 720 mg am and 720 mg pm
- many side effects including rash, tenderness in feet, warts, squamous cells (now removed) and very red face, high sensitivity to sunlight (continuing to take 10 mg of Prednisone entire time)
-taken off Z 7/8 for one week to calm down side effects
-7/15 started back on Z 720 mg am and pm
- as 7/17 taken to emergency room with high fever we could not get down
-as of 7/18 Oncologist put him on 480 mg of Z am and pm and continue with 10 mg of Prednisone
- since 7/18 he has had fever and chills off and on almost always in early evening and night, however temperature has not been as high as when he went to ER. He has been taking Tylenol every 3 hrs and alternating with Advil every 3 hours

Question is has anyone else dealt with this on and off fever/chills while on Zelboraf and what was your treatment for same?

Good news is no new Melanoma on scalp and CT scan on 7/18 was all clear so clearly the Zelboraf is working.

We are in it to win it!

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Everymoment's picture
Replies 4
Last reply 7/22/2013 - 8:07am
Replies by: Everymoment, POW

Hi Everyone,
So the neurologist is stumped as to why I've had a stroke at 35. All the blood work keeps coming back fine for autoimmune diseases. I had a CT of my head and chest and it came back clear other then a small lung nodule that the radiologist said did not look suspicious. The MRI came back with a small stroke. Considering the doctors can't figure out why I've had a stroke isn't it time to do a PET scan? After my history of melanoma I think it would be warranted. Thoughts?
Thank you,
Isabell

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Anniejoy1's picture
Replies 16
Last reply 8/1/2013 - 11:41pm
Replies by: JerryfromFauq, Anniejoy1, HopefulOne, BrianP, POW, ecc26, Linny, Anonymous

Hi my name is Annie. I just got home from the hospital after auxiliary dissection, WLE and a skin graft. I had a a sentinal node biopsy come back positive 2-1/2 weeks ago. I'm hoping this is the end of the slicing and dicing. I've been checking in on this board for a for weeks now, thought its time to jump in. I know there are many things I should be asking an Oncologist including the use of Interferon which I read many pros and cons about. When I have my latest path reports, I'll be looking to check my options, any advice will be helpful. As I'm sure happened to many of you, one call sent my life reeling, and the spiral continues. Thanks, and I helpful any information that anyone would like to share.

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HopefulOne's picture
Replies 5
Last reply 8/4/2013 - 10:02pm

Just wondering if anybody has seen any research on how ipilimumab affects tattoos. My husband has pretty many tattoos all over his body and last night (at almost three weeks past his first infusion) the outline and shading of one on his leg became raised, approximately a 10-inch by 5-inch area was completely affected. This tattoo is 14 years old. No other tattoos on his body were affected. Yet. And after putting hydrocortisone cream on it it seemed to settle down. It was the weirdest thing ... It was a 3D image.

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sandatucson's picture
Replies 1
Last reply 7/22/2013 - 8:21pm
Replies by: aldakota22

Hi one and all. I jhave not been on the boards for a while.  So since Last May, we switched from local treatment (Tucson, AZ) for Harry's stage 3C melanoma on his leg, to John Wayne Cancer Center in Santa Monica. We were always seeking a vadcine journey, rather than simply treatment. Harry's ILI produced zero results, though it is supposed to work on 60% of people. We looked for vaccines. We found that JWCC was proceeding with BCG trials.

Since it is not a new drug, all who participate get the real BCG no possibility of placebo. He has been treated with it since April 10. This is given initially as shots in the body, followed by direct injections into the leasons.  There was no way of telling success or failure Except that last June when he went they found only 3 new tiny, tiny ones. IN May they found 11 new ones All got injected. He just went back last Monday Dr.Faries decided to take 2 biosies from previously treated leasons. ON Friday we got the news BOTH showed no evidence of any melanoma. 

Needless to say we are extatic and hopeful, and grateful. I wanted to share this great news with all of you, and encourage to always reearch every where for what is available.

We love JWWC. Great doctors and great care. The great thing about the BCG is the minimum side effects- primarily being tired. Secondly, since it is not a new drug, it is not expensive, and insurance people are all too glad to OK it.

I am not sure how many places offer BCG as a treatment for melanoma. I know that BCG is highly effective also in bladder cancer and it is just starting to be used for that cancer here in Tucson.

I hope that all of you fighting this desease or taking care of some one who is in the fight, will be blessed with good news and outcomes.

The one great thing we can all rejoyce about,is that there are so many new discoveries against melanoma, that we can indeed remain optimistic and hopeful.

Sanda caregiver to Harry

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Hi one and all. I jhave not been on the boards for a while.  So since Last May, we switched from local treatment (Tucson, AZ) for Harry's stage 3C melanoma on his leg, to John Wayne Cancer Center in Santa Monica. We were always seeking a vadcine journey, rather than simply treatment. Harry's ILI produced zero results, though it is supposed to work on 60% of people. We looked for vaccines. We found that JWCC was proceeding with BCG trials.

Since it is not a new drug, all who participate get the real BCG no possibility of placebo. He has been treated with it since April 10. This is given initially as shots in the body, followed by direct injections into the leasons.  There was no way of telling success or failure Except that last June when he went they found only 3 new tiny, tiny ones. IN May they found 11 new ones All got injected. He just went back last Monday Dr.Faries decided to take 2 biosies from previously treated leasons. ON Friday we got the news BOTH showed no evidence of any melanoma. 

Needless to say we are extatic and hopeful, and grateful. I wanted to share this great news with all of you, and encourage to always reearch every where for what is available.

We love JWWC. Great doctors and great care. The great thing about the BCG is the minimum side effects- primarily being tired. Secondly, since it is not a new drug, it is not expensive, and insurance people are all too glad to OK it.

I am not sure how many places offer BCG as a treatment for melanoma. I know that BCG is highly effective also in bladder cancer and it is just starting to be used for that cancer here in Tucson.

I hope that all of you fighting this desease or taking care of some one who is in the fight, will be blessed with good news and outcomes.

The one great thing we can all rejoyce about,is that there are so many new discoveries against melanoma, that we can indeed remain optimistic and hopeful.

Sanda caregiver to Harry

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JoshF's picture
Replies 2
Last reply 7/21/2013 - 1:04am
Replies by: Janner, Everymoment

I follow this board daily but don't post often. This has become a place of comfort and hope. I had my 3 month derm follow up yesterday and had 2 more moles each approx 5mm or less. Now the anxiety sets in which has been the worst part throughtout my 2 years of dealing with melanoma even thopugh I'm currently NED and pray to stay that way. I never had or dr.'s never found a primary. They think there is still a chance that there was no epidermal component but that is a whole other story. Question is...with the 2 moles I just had removed that makes a total of 10 with about 4 of them being atypical dysplastic nevi. If these 2 are as derm thinks they will be...that makes 6 out of 10. When do you fall into dysplastic nevus syndrome? I have a fair amount of moles but I don't think I have A LOT of moles. A friend said I should find a derm with a dermascope as this provides better detection of melanoma. Anyone have any insight or experience with this?

 

Thanks

 

Josh

Let's work for better treatments....for a cure!!!!

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manu's picture
Replies 13
Last reply 7/23/2013 - 4:57pm
Replies by: ekimap, manu, Janner, POW, bonusfries, Anonymous, Everymoment, W., Johnfdc7

Hi,

I'm new to the forum and probably have the same question and fears as most, but I prefer to ask rather than not.

Here is my situation. I'm 39. My wife discover what is a 1cm wide mole near my ear on the edge of my hair 8 days ago. We were immediately surprised because we never saw it before and due to location, we can't see why we would have missed it, especially after my last hair cut 1 month ago which would have exposed it in full. So we're concerned.

I immediately went to see my family doctor who made a referal for a dermatologist. yesterday i was booked for teleconsultancy, where I saw a nurse who took pictures of it and is now sending the pics to a dermatologist of initial assessement. They say a response would come within 4 weeks and most of the time within a week, depending on how many patients they have to deal with. 

I've taken macro pictures 7 days ago and yesterday and the thing seems to have evolved quite a bit, not in diameter but in thickness. It's now more raised. Here are the pictures: http://postimg.org/image/98qliukyf/

Given this rapid change, the fact we never saw it before in a place that should have been seen and the possible wait for weeks to get an answer, I'm more concerned. Also I'm travelling next week for business and am wondering if I should cancel to go see someone else fast. 

How quickly can these things grow and how fast one should act. Are we talking days, weeks, months, years?

Thanks for any advice.

Manu

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val_erie38's picture
Replies 7
Last reply 7/28/2013 - 10:56pm

Had a shave biopsy on right breast today. Prior melanoma almost seven years ago on left buttock, had punch biopsy, then full excision. No further tx required or recommended at that time. Completed all monthly and yearly checks until 5 year mark. Went today for regular check up, had a mole on breast that the medical person stated she "didn't like the look of", and she did the shave biopsy. Has anyone else had a primary spot on a breast, and if so, did they do shave or punch at first? I'm wondering if the shave vs punch was a matter of preserving look of breast until pathology is back? I can't remember if last time it was shave, punch, excision, or just punch and then excision.

Thanks for thoughts!

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Janet Lee's picture
Replies 4
Last reply 7/22/2013 - 6:00pm

My husband, Don, was diagnosed Stage 4 in January, had radiation to his pelvic area, had Cyberknife on his first brain met, which then had to be surgically removed. He has a lot of disease throughout his body. He was on Zelboraf for only 2 months, and had a "mixed response." He just completed his 4th dose of Ipi this week. At the end of May, he had Cyberknife again to two new small brain lesions. But one month later, two more new brain lesions have showed up.

We decided this week to move to from Dana Farber (our oncologist very unexpectedly left there) to Mass General and Dr. Keith Flaherty, who we've heard a lot of good things about. 

Initial recommendations were to do WBR, but there are so many questions and concerns about WBR, and the trend seems to be more and more toward doing SRS whenever possible. There are many pieces to this problem-solving puzzle, such as timing, what if Ipi doesn't work, getting the brain stable for PD-1 trials, etc. This week, the radiation oncologist at MGH said she felt we should do SRS on the two new lesions, and that is what we will probably do. 

My question right now is whether to do the SRS in Boston at MGH, or do it closer to home where Don has had radiation to his pelvis and where he's had his previous two Cyberknife procedures. The radiation oncologist in Boston specializes in brain and eyes, and she's done a LOT of brain SRS. The radiation oncologist closer to home is very experienced and well-trained also. I lean toward Boston; Don wants to stay closer to home. What I don't know is whether there is much of a difference between the various SRS procedures (Cyberknife versus I-don't-know-what-machine in Boston). Also, is the skill and experience level of the person doing the procedure an important piece of the puzzle?

We are staying positive and optimistic but the nuances involved in fighting this disease are mind-boggling. Learning from the people on this forum has been a life-saver in more ways than one!

Janet

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DeniseK's picture
Replies 11
Last reply 7/22/2013 - 6:08pm

Hello Again It's me!

I went to the specialist again yesterday.  I asked a bunch of questions that I know some of you were curious about.

First of all I have a new game plan.  My doctor is switching my Z to debrafenib, he said this BRAF inhibitor has been proven to cross the brain barrier.  I will stay on  Z until the Deb comes then take 1/2 dose while keeping on the Ipi infusions.  He wants me to complete the 4 course cycle of Ipi.  I will also still have gamma knife next week.  

We are still talking trial but not for a few months until I complete Ipi.  I asked about stability in the brain and if you had to be stable from MRI to MRI or from last Radiation/Gamma/or SRS procedure.  There are 2 criteria.  One is brain MRI to MRI stable for 8 weeks, the second is a 4 week washout period from radiation or treatments.  

I guess I'm not worrying about that right now since it's going to take me 9 more weeks to complete Ipi.  He also said Ipi ususally doesn't start working right away.  I know a lot of you know this already but I didn't.  He said it could take it 3-5 months for it to kick in.  I was shocked that we're going to wait that long but like he said, "if it works then we don't have to worry about a trial."  

I'm staying positive and optimistic.  A lot of what if's going on in my head but also a lot of hope. 

Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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AMPDesigner's picture
Replies 4
Last reply 7/19/2013 - 8:54am
Replies by: Janner, Anonymous, Thandster, Owl

Yesterday I was doing my evening ritual (washing my face, moisturizing, brushing/flossing, etc).  I noticed a new mole at the point where my neck meets my chest.   I looked at a photo taken of me on April 25 (less than three months ago) and have confirmed there was no mole there.  This is not read or purple (I believe ruling out an angioma).  I'm 49 (will be 50 in November) with very light skin, light hair and blue eyes.  I have many moles on my body and have  had two moles removed in the past.  These were "iffy" (meeting the ABC..... criteria).  Both times they were "okay, but good decision to have them removed - the cells were atypical."  (Note:  one mole was itcy and bleeding, the other was on my back, I never saw it, the doctor was the one who insisted upon removing it.

My mother had skin cancer (on her legs, not melanoma, but squamas and basal cell).   I've had four friends who've experienced melanoma, two who have died. 

How fast does it take for a new mole to appear and at what point should I go to the doc?  It's funny because I just saw my doc and we were discussing my moles and he asked if I noticed anything new and I said no.... now it is just three weeks later and I've noticed this new one just yesterday.  Size-wise, it isn't as big as a pencil eraser - about 1/2 that size. 

Four people I know have had melanoma - two have died of the disease.  The survivors has moles they noticed that fit the ABC criteria.  The two individuals who died were diagnosed at Stage 4, and in their cases the primary mole couldn't be found (it was explained that their immune system may have "fought" the mole, but the cells remained in the system - if that sounds possible).  In one instance, the cancer was discovered on the sternum of a friend who had to have emergency heart surgery - imagine waking up after having heart surgery with an oncologist greeting you! 

Anyway, back to my primary question - how many people have gone from "nothing there" to "something there"  ?  Is it something gradual (a few years) or fast (as I said, this wasn't there in April). 

I appreciate your kind responses!

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Anonymous's picture
Anonymous
Replies 1
Last reply 7/21/2013 - 3:26pm
Replies by: Linny

How are you doing Alana? Any new info? Does anyone know?

She posted a 1-1/2 to 2 months ago. Just curious what has happened since her initial consult.
Thanks

(1 Peter 5:7 NLT). Give all your worries and cares to God, for he cares about you

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Tina D's picture
Replies 12
Last reply 7/25/2013 - 9:20pm
Replies by: Tina D, NYKaren, Anonymous, aldakota22, 5374brian, Becky C., Owl, Amanda

My pre-prescreening brain MRI was normal... SO thankful. I go to Vanderbilt for the rest of the prescreening on the 22nd,and if all goes well I am scheduled to start into the Merck PD1 trial on Monday the 29th!!

Tina

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hawaii marcus's picture
Replies 1
Last reply 7/19/2013 - 8:47am

I am a new MM patient, and have just completed my first 2 surgeries in March and April. I started radiation on a Tomotherapy - Hi Art machine, and have completed 30 treaments to my face. I have an odd sunburn and my nose lights up like Rudolph, but I am doing well.

I am ready to heal, and move on with my life. This round is over, and now I await a new PET scan in September to see if there is any spreading of disease.  

My thoughts and prayers go out to those who I am reading about and their family struggles with this disease on these boards.

Keep up the fight, and enjoy your time with loved ones!

 

Aloha,

Marcus

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