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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lizard's picture
Replies 1
Last reply 9/17/2011 - 10:32pm
Replies by: MariaH

Hi all

Just wanted to give a quick update and a huge thank you to all who responded to my earlier post. The gist of my question was that my wife has stage 3a and we were debating taking and scheduling the interferon. My job takes me out of town and we were trying to figure out how bad it was going to be - if I could safely leave her for a day or two.

We did decide to do the peg interferon and she gave herself the first injection Monday night. The only side effects so far have been waves of high fever, headache, serious fatigue, and backpain. This has been constant since the injectction, but nothing worse than that. She is trying to drink a lot and eat mild foods. With any luck it only gets better as things progress and we get back to something that feels like "normal" life soon.

See you

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Angela C's picture
Replies 11
Last reply 9/17/2011 - 10:12pm
Replies by: JerNYC, Anonymous, Angela C, NYKaren

Hi everyone.

Tuesday was my first dose of Yervoy. Prior to Yervoy, I was on the MDX-1106 trial. While on that trial, I experience sun senstivity and if I didn't cover up real well when going out in the sun, I would break out in a rash. I usually got it on my chest and sometimes on my neck. It usually would go away within a day.

So, Tuesday was my first dose of Yervoy. Yesterday I went on a couple of walks outside. One was 20 min the other was 30. I wore a hat and a long sleeve shirt, but I didn't button the top button of my shirt like I normally do to try and cover the skin on my chest. About an hour after my second walk, I developed quite the rash on my chest. Very red and bumpy. Then as the night continued, it showed up on my neck, behind both of my ears and on the top part of my chest. This morning I woke up and I have tiny little bumps on the skin around my mouth. My chest is less red, but the bumps are itchy today.

Now I'm trying to figure out what caused this. My last dose of the MDX-1106 was six weeks ago. Maybe some of that is still floating around in my system and caused this sun reaction? Or, maybe it's from the Yervoy? Or, maybe it's a combination of reactions from both drugs? The rash on the chest is not something new for me, but I've never had it show up behind my ears or on my face.

I know that a rash with Yervoy is quite common, but could it really show up the day after the first dose??

What do you guys think?

~Angela

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Gracie's picture
Replies 11
Last reply 9/17/2011 - 9:30pm

I am scheduled to begin IL2 Monday morn.  I was on the ipi/placibo trial study for 14 months with minimal side effects if any, as Stage 3b.  I had no tumors till now.  Presently I have 2, one in lung, one on chest wall.  I was unblinded today and yes, I was getting the ipi.  I guess you would say, "I am not a responder."  So now we try IL2.  My doc says that the side effects will be more intense coming from the ipi, possible bowl perferation.  I will have a colonoscopy tomorrow to check for weaknesses or inflamation in bowel from ipi and treat colon with steroids for two weeks before IL2 if necessary. Doc has been attempting to talk to mel oncologists around country with patients on IL2 from ipi.  I was hoping to hear from someone on the board sooner.  I am having second thoughts about doing IL2.

Have any of you experienced IL2 after ipi?

How were the side effects for you?  perhaps more intense?

Were you a responder to IL2?  (Doc said it was more my "chemestry" that prevented me from responding rather than a "shelf life" of ipi over 14 months)

does anyone know if you don't respond to ipi you are as likely to not respond to IL2?

Has anyone experienced a bowl perferation and what is the long term repercussion?

I am very thankful for this board and all of you...a safe place to go during this time when I lay awake at night thinking of questions I forgot to ask doc. 

Gracie, stage 4

cancer is in my life, but is NOT my life

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Anonymous's picture
Anonymous
Replies 3
Last reply 9/17/2011 - 9:25pm
Replies by: nickmac56, Karin L

Hi,

My bones in my lower back have been hurting. I am scheduled for a PET & CT scan soon.

Do Bone Mets show up on PET & CT SCANS? Has anyone been diagnosed with bone met detected on a PET or CT scan?

Is there a special scan to determine bone mets, if so, what is the name of the scan?

Thanks for your comments & feedback.

Dick

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Anonymous's picture
Replies 2
Last reply 9/17/2011 - 3:03pm
Replies by: mombase, jax2007gxp

Hi Jacki,

 

Saw an earlier post. How are you doing??? Did the doc take out any deep nodes?

Wishing you a qick recovery.

Mary

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vickykay's picture
Replies 3
Last reply 9/17/2011 - 2:52pm

Hi, can someone explain BRAF mutation to me where I can understand . I had the BRAF and it came back negative. What does this mean for me?

Stage 3b - will start interferon Sep. 19th. Started interferon Oct.2011. Received three weeks everyday with very bad side effects. Stop high dose everyday and started shots. Had to stop after one injection, vomiting blood. Had Ct, came back clean.

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wgalinat's picture
Replies 3
Last reply 9/17/2011 - 11:57am
Replies by: wgalinat, ValinMtl

I've heard you are back home.
Tell me you are doing ok Val.

"don't ever give up" "don't ever give up" ( the Jimmy V Fund for cancer research)

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TomGlo's picture
Replies 6
Last reply 9/17/2011 - 7:49am
Replies by: TomGlo, Sherron, alicia, lhaley

Hello everybody,

I had nodular melanoma on my left side of the head in 2008. The treatment I received was wide excision and a sentinel lymph node biopsy, which came back negative. Two years later, in December 2010, I discovered an enlarged lymph node on the left side of my neck. After a biopsy, it turned out to be melanoma. My oncologist decided to make a complete neck dissection. Some other nodes contained little traces of melanoma, which means that I was diagnosed stage IIIC. After the surgery, in February 2011, I had radiotherapy all over my left neck area. I recovered really well from surgery and radiotherapy, and my last PET scan end of June 2011 was all clear. Bloodwork was excellent too.

 
A week ago, I discovered an enlarged lymph node in my groin, on the left side. It is not terribly large, but I can palpate it. I'm worried now, since I already went through all of this a year ago... . Does anyone know how likely it is that melanoma travels from my neck to the groin lymph nodes? I will see my oncologist next week to check it out.
 
Thank you for your advice.
 
Tom

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Bill G's picture
Replies 9
Last reply 9/17/2011 - 4:20am

this month.  Stage IIC on top of head with satellites.  Given odds of less than 25% for 5 year survival because of its depth and closeness to vascular system.  Breathing easier thesse days.  My thoughts and prayers go out to all for positive outcomes

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Sherron's picture
Replies 3
Last reply 9/17/2011 - 3:50am

Thinking of you, and wish the you the best.

Take Care,

Sherron, wife to Jim FOREVER

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TracyLee's picture
Replies 6
Last reply 9/17/2011 - 3:39am

Hi y'all,

Has anyone had a side effect from either ipi (Yervoy) or BRAF (Zelboraf) for the following?

The ball of my foot is terribly painful. Feels swollen, hurts to walk, etc.

The heel of my OTHER foot is also very painful, swollen, and this now is moving up my entire foot to include the ball of my foot.

It feels as if I'm walking on rocks or hard ball bearings. I do have a call in to my podiatrist, but have never had an issue like this before.  The heel has been a problem previously, but only the heel.

Of course, it could be because I'm getting old and crunchy. MY 48th birthday is November 1st, and I will gladly take sore feet over major melanoma flairups ANY DAY. I'm happy to be able to walk, work, see my next birthday, etc.   :)

Thanks, wishing everyone a wonderful weekend.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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Those people who are new to this bulletin board might not know that there used to be a thriving chat room here. It was so useful to me when I first discovered this place. I went in there and 'met' many of the people that helped guide me through my early days of interferon, many of them gone now taken by melanoma, and many of them just gone away from reading these boards.

I don't spend much time in there myself anymore, since it is so quiet, but I will often log in there and just minimize the window while I read the boards or check my facebook or news readers. And new people still come in there, sometimes even before they find these boards, and they are usually pretty happy to find someone to talk to who understands the diagnosis.

Anyway, Shelby has posted some suggested chat times in the chat room, so now when newcomers enter the chat room, they'll see some times listed when they might expect others. I hope this will help people who actually want to use the room find others of a like mind.

I see she's listed the times in Eastern Standard Time, each night at 8pm, and I'd like to encourage some of the long term members to try popping in there over the next few weeks to see if we can't encourage a chat room revival. I am often cooking dinner during the 5 O'Clock hour (I am pacific time) any of you night owls back east who like to get on late can look for me around 10 or 11 Eastern as well.

Dian

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Anonymous's picture
Replies 2
Last reply 9/16/2011 - 7:30pm
Replies by: washoegal, lhaley

Hi,

This was written in a pathology report taken from a mole on my mid-abdomen.  I apparently have many of these moles. Is it malignant? Can someone kindly opine and suggest what next steps should be?  Should I be seeking a digital dermatascopy exam?

 

From report:

Diagnosis: Junction nevus, dysplastic type, extending to one lateral  margin.

Microscopic description: The dennoepidermal junction contains a melinocytic proliferation in which the melanocytes are disposed primarily in nests.  Many of  the melanocytes show mild cytologic atypia, bridge and fuse adjacent rete and are associated with a fibrosis of  superficial papillary dermis.

 

 

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Steve in Detroit's picture
Replies 8
Last reply 9/16/2011 - 2:11pm
Replies by: Anonymous, JerryfromFauq, jim Breitfeller, chenrydh

The following was posted acidentaly by "kris herrington" in the "off topic" forum and I am re-posting for her. Thank you in advance for any advice for Kris

 

Hello all...

Got a big decision to make...and I'm looking for some advice.  I am stage 4. met in my lungs and abdomen, all over really. I just finished taking the BRAF Plexxicon drug in august, since being off the drug the mets have gone crazy and are increasing rapidly. I am BRAF V600K,  not V600E so they think thats why I may not have responded to the Plexxicon.  I was just rejected at the NIH for the TIL trial. So now my options are to start the MEK trial or start on Yeroy.

The trial doctor doesn't have any stats on the MEK except to tell me that people that did not respond to the Plexxicon did respond to the MEK, but couldn't tell me much more.

My oncologist tells me to start Yeroy that I need something different than a BRAF drug. I'm concerned about the Yeroy as it is very toxic and that the response rates are so low. I was told today that the overall survival was 2.1 months but that others, less than 10% of the people were out 1-3 years.

If I take the Yeroy now, it basically excludes me from any trials at this time if it doesn't work. All I got left is chemo and we all know this doesn't have great results.

I progressed slightly on the Plexxicon (2011)

Did not respond to IL-2 (2011)

Did not respond to Interferon (2009)

 

Soo I'll take any suggestions, advice, stories.. anything... HELP!!!

 Kris 

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I am asking if anyone can tell me something about the dyes. I have done scans and scans for most of my life.

 

3 months ago I had a reaction and I itched and hived on feet, legs, truck, back face, and arms starting about 5 minutes after the CT scan. They treated me with a couple IV pushes of Benadryl and said next time I would need to be premedicated due to allergy reaction.

 

Yesterday I had my scan and I had to take Medrol 32 mg 12 hours before and then again at 2 hours before as well as 50 mg of Benadryl 1 hour before. The tech says the premeds usually always work in 99% of the patients...I drink 3 glasses of medium stuff that taste like gator aid...then after they do a couple run throughs in the machine they use a drip of Optiray 320. This time they started the drip and ran me in the machine and on the way out I was starting a serious reaction to the dye. I went into shock and it was an awful ordeal yesterday. Hives, itching, urge to vomit, bottomed out on BP , breathing trouble, blacked out, they pushed steroids and Benadryl in my line and some other things. They hooked me up to monitors and over a course of time  I had 7 adrenaline shots to the chest. I was trembling and shaking all over like Parkinsons.They had to monitor me so they admitted me and kept me on O2 and gave me zantac in IV as well. They wanted to give me Duladid but my hubby and I said no.

 

 I didn't even get to do my MRI or my Anti PD 1. My question is I had to reschedule my Anti PD 1 and MRI...and the nurse says I need to take the premeds again. It had to be on the first drip of the CT dye I had reaction....now I am scared because of the MRI dye...anyone know if I will end up in shock again??-  Dr W says I need to be certified as allergic to Iodinated  radio contract dyes and Optiray320 and I should never take the stuff again...why would I need to be premed again for the MRI? Isn't it also an iodinated dye?  It was so close to death yesterday and if one drop in my vein can do that what is going to happen if they use it again for the MRI? Do they have a substitute dye for people who are allergic?- Lynn

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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