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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bigb0624's picture
Replies 1
Last reply 1/8/2013 - 6:28pm
Replies by: Tina D

To Whom It May Concern:This is to everyone that this applies to.

 

I would like to know how long you were on Z before your doctor had you switch to IPPI.  Were you still getting positive results from Z when you switched?

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CLPrice31's picture
Replies 4
Last reply 1/12/2013 - 12:27am

Happy New Year, everyone! Stage III warrior here with a quick question. I am going through the maintence phase of the ipilimumab/placebo trial and just completed another treatment about a week ago. I've had this reaction before; however, it's a bit more intense this time and about 2 weeks early: Night sweats.

I wake up completely drenched yet shivering. I finally got up this morning and took my temperature: only 99.99! I just had my scans that showed no evidence of disease, just a cyst on my ovary that I will have an ultrasound on, but everything looks "unremarkable" and "unchanged."

Have you had this happen? According to Google, night sweats and low grade fevers are signs of the drug, but also signs of 100 other things including menopause! wink I'm only 25 so I definitely hope that's not the case!

Any advice/suggestions you can give me are greatly appreciated. I'm getting a bit tired of having to wash the sheets daily...

"The odds are that the...the odds mean crap. So people should face it, and they should fight." ~Grey's Anatomy. http://adventurewithmelanoma.blogspot.com

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akkcak's picture
Replies 1
Last reply 1/5/2013 - 11:37am
Replies by: Janner

Went for skin check and dr wanted to remove a mole on my chest. It came back mildly dysplastic. Well a couple of weeks go by and i noticed there is a brown dot right in the center. Is this normal? Of course i was at the onc yesterday and forgot to ask.

Thanks!
Amy

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lilred75's picture
Replies 13
Last reply 1/22/2013 - 12:29am

Wow, it has been FOREVER since I was last here! I recognize some of the names, so maybe there are still a few who remember me ;). I like to visit here now and then, and check to see how people are doing. I like to give hope to those who are currently wondering where their life goes from a newly stage IV diagnosis, and let "old" members know I am still alive and kicking.

I am heading into my 7th year as a stage IV melanoma survivor...HOLY CRAP! How did THAT happen??? Even better, I have been NED since Fall 2007. Yep, nothing but PET and CT scans to monitor since October 2007. It still blows my mind to realize how many years it has been since hearing those horrible words in my oncologists office. I have been one of the lucky ones. Since becoming NED, I have had two beautiful daughters (ages 2 and 6 months now), and can not complain at how good life has treated me. I have watched several friends pass away, or get diagnosed with different cancers and other unexpected conditions, and it just makes me value the days I have had even more. I am scared to death about what the future holds, but every day I have had with my daughters, is a day I could never have imagined in my wildest dreams.

If all continues to go well, this year I will turn 38 and celebrate with a husband who I didn't meet until I was already diagnosed with stage III, and with two amazing toddlers who I never thought would be possible. I don't know why I am a lucky one, but I try to live each day for every single person who hasn't been so fortunate.

A lot of crap happens to really good people. But I am proof that miracles do happen, so never give up hope, until the very end. You never know how good life might get, nomatter how many days you have to live it.

Alison (Lilred75) 

Miracles can happen to those who believe in them.

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Anonymous's picture
Anonymous
Replies 9
Last reply 1/18/2013 - 9:48pm
Replies by: Ranisa, Anonymous, Cate, Angela C

Hello to everyone out there. I'm hoping someone can refer me to a melanoma specialist in IL preferably Chicago area. I have heard of a few names and di some research (Dr. Jon Richards came highly recommened) as well as some other from University of Chicago, Rush, and Loyola. Any experiences out there or suggestions?

 

Thanks

 

JB

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

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Guide to Understanding Genetic Conditions   Good report with many items to click on.

http://ghr.nlm.nih.gov/gene=KIT

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

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LynnLuc's picture
Replies 4
Last reply 1/6/2013 - 7:10am
Replies by: triciad, POW, NYKaren, DeniseK

 

General Update (From Brandon)

Written 12 minutes ago by Brandon Haley

Mom has asked me to make a post and keep everyone up to date.  She has asked for people to not send emails for a little while.  Currently, she is having some vision problems and is not able to read them and she doesn't want anyone to worry about why she has not responded.  Yesterday was her last day of radiation, and she is quite happy about that!   She also had her first IPI transfusion this week.  Personally, I would like to thank everyone for the continued support that they have given.  It really does make a difference. We will keep everyone posted.

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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markd's picture
Replies 4
Last reply 1/4/2013 - 7:02pm
Replies by: Fen, Anonymous, scots

hi. i was diagnosed in october 2011 with stage 2 melanoma. had the wide incision(margins clear) and SNB which turned out negative. x- rays and blood work every 3 months for first year, now every 6 months. my question is , when should i get another scan, or do i need one? thank you, mark d

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LindyVA's picture
Replies 15
Last reply 1/16/2013 - 6:28pm

My husband (stage four mel) started Yervoy Dec 1 2012...4 infusions and he did well, only fevers, bad rash and fatigue. The Ong told us he was a melanoma expert only to find out my husband was the melanoma patient and the only Yervoy patient. I watched the test using all the tips I learned on this wonderfully, informative resource...melanoma.org.  I knew he was responding by the numbers. But the Ong said ACL's have nothing to do this whether the drug was working or not.   After # 4 the PET/CT showed tumor reduction in lungs, adrenal, heart(this was almost as large as heart)  and brain.(Brain MRI) He has had gamma knife 3 times.

I asked the Ong about maintainence. He told me there was not such thing. I produced several pages of comments on maintaince every 12 weeks. So he agreed and did one maintainence and said that since my husband was too tired to play golf he should have no more Yervoy. Well, it was Aug and 103 degrees in Virginia, but a new CT scan said everything was OK. I really felt we needed to continue maintainence until the end of the year, but the family was ecsatic over the good reports so I remained possitive.

Well, 2 days before Christmas Ong informs us he has "hot spot" on adrenda glandl. I said he had met on adrendal 13 months ago before yervoy...could it be the Yervoy lighting it up? He said absolutely not. I asked if we could do some more maintainence and Ong said only if he survives the surgery then we will talk about it. But he would have to due re-introduction because maintainence would no longer be viable. I would think as a good Yervoy responder, that there would be other options than going directly to surgery.

He says we need to see surgeon asap and hear about this cool new robot they would use for the surgery. Surgeon says my husband not good candidate for surgery do to heart conditions, but he survived last 4 melanoma surgeries so let's go ahead and schedule surgery asap and hope the second adrenal functions for both. I mentioned to the surgeon it could be the Yervoy... and he says he never heard of Yervoy, but it has stopped working by now (12 months after first yervoy treatment) so surgery is the only thing to do

I have been researching and found posts stating they can not tell if "hot spot" is active met or active yervoy attacking the met. I am so confused and scared. I can not tell our 6 children, their spouces and our 11 grandchildren we are on the rollercoaster again.

There are so many of you that are very knowledgeable of yervoy and I used your knowledge to get him this far. Thank you.

Questions? Can it be Yervoy and not the met lighting up and is there any way to tell if it is a new or the same mass? 

Can we ask for another reading of the PET/CT scan to try and clarify what is lighting up?

 Must yervoy be totally re-introduced or can we re-start maintainece. 

How do we find a second opinion when we do not have a melonoma specialist in our city (Richmond, VA)

Am I wrong to question these professionals and to postpone this surgery until we have more information.

Thank you for your time and attention to my concerns and for any suggestions you my have.

Linda

 

             

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Mickey n Jo's picture
Replies 13
Last reply 1/10/2013 - 5:15pm

Hi to all, sorry we haven't posted in quite awhile but things have been rather hectic here. My husbands most recent PET (12/13/12) showed mixed results with some decrease in some mets, but progression in some others. He is still on Zel, 3 pills morning and night. We tried to up the dosage to the full dose of 4 and 4, but he just can't tolerate that amount. He was also in the hospital for a few days due to a perforated bowel, which thank the Lord, healed over on it's own, because the surgeon didn't think he would be strong enough for an operation. Now the Drs. are suggesting Yervoy, in combination with a low dose of Zel, (2 and 2). I am so scared, because I thought that the combination of the two causes liver toxicity. We want to make the right choice, but what's right? As of now, the decision is to take another scan the beginning of Feb. and see what that shows, but if we wait too long things could get out of control since Yervoy takes time to show any benefit. Also, since Yervoy has colitis as a side effect, is it wise since he already had a perforated bowel, and an operation is not an option at this time? As our subject line stated, we are so confused, don't want to make the wrong choices. Any input would be very much appreciated. Oh, also, one of the Drs. mentioned to us that there is a possibility (not definite) that the BRAF/MEK combo might be approved for use in the next couple of months. Hope so, but don't believe it till I see it. Praying for everyone! Thanks.

                                                                                   Jo (Mickeys' wife)

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awillett1991's picture
Replies 13
Last reply 1/7/2013 - 7:03am

Her last update was
Dec 5th 2012 .. PET scan shows 2 1/2 X 3 1/2 cm tumor in abdomen and 2 small adjacent lymph nodes lit up. Removed from Zelboraf completely

Tina D has been in the hospital since Christmas Eve. She completed her first Ipi infusion but had started with some tummy trouble beforehand which has escalated to high temp, white counts, terrible abdominal pains and so far lots of tests with no answers.

I believe she is set for another scan today with contrast then possibly exploratory surgery. Please say a prayer for her so she can get home to her sweet family. She has been such a brave warrior for many many years and her family needs her!!

Amy

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Replies by: awillett1991, Swanee

Hello,  I am new to this group and as the girlfriend of a Metastatic Melanoma patient, I have a ton of questions and I don't get to all the doctor appointments at Vanderbuilt Medical Center as I live out of town.  

First question.  Matt chose to do a clinical trial with PX866 and Vemurafenib.  I think we both thought this would "cure" the tumor growth and it has reduced the size of the tumor on his cheek.  But it now sounds like he will be on this until it stops working and then he goes on another medication.  So there isn't a "remission" period?

He has been told the melanoma is "in his blood".  what does this mean?

Has anyone done radiation and Venurafenib?

Thank you,

Renee

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Snickers60's picture
Replies 2
Last reply 1/4/2013 - 3:09pm

I have written her twice and heard nothing back.    She was to start IPI on the 18th of Dec. I THINK.     I have not been able to find a update and was

thinking of her.    LET US HEAR FROM YOU TINA D ..........thinking good thoughts of you and wishing you well.   

 

Nancy (devoted wife of 3 X Warrior Wayne) 

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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POW's picture
Replies 9
Last reply 1/7/2013 - 2:08am

MRI and CT scans in early December showed that all of my brother's mets, including his brain mets, were stable except for one lung met which increased from 3 cm to 4 cm. His oncologist felt that the melanoma was becoming resistant to Zelboraf so he took him off Z for 30 days to prepare for either ipi or a clinical trial. Three weeks later, I noticed my brother was again experiencing speech aphasia and mental confusion and I worried that the brain tumors were coming back. Sure enough, they are. My brother had a brain scan at Moffitt yesterday to prepare for the LGX818 clinical trial. They found 6 brain mets-- 2 old ones growing and 4 new ones. They are located all over his brain. So clinical trials are out. Damn!

My brother still wants to try ipi at the VA. He is supposed to start that next week. But given how fast his melanoma is progressing now, we're all feeling frightened and discouraged. 

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Replies by: lou2

http://therapy.collabrx.com/melanoma/disease_model A Melanoma Molecular Disease Model Smruti J Vidwans(1), Keith T Flaherty(2), David E Fisher(3), Jay M Tenenbaum(1), Michael D Travers(1,5) and Jeff Shrager(4,1). (1) CollabRx Inc. Palo Alto CA 94301, USA (2) Department of Dermatology, Cutaneous Biology Research Center, and Melanoma Program, Massachusetts General Hospital, Boston, MA 021114, USA, (3) Massachusetts General Hospital Cancer Center, Boston, MA 02114, (4) Symbolic Systems Program (Consulting) and Stanford University CA 94301 USA,(5) Current address: SRI International, Artificial Intelligence Department, Menlo Park CA 94025. Melanoma Chief Editors: David Fisher, MD, PhD, Keith Flaherty, MD Melanoma Area Editors: Marcus W. Bosenberg, MD, PhD, Jeffrey E. Gershenwald, MD, Meenhard Herlyn, DVM, DSc, Harriet Kluger, MD, Glenn Merlino, PhD, Katherine L. Nathanson, MD, David Polsky, MD, PhD, Victor Prieto, MD, PhD, FACP, Antoni Ribas, MD, Lynn M. Schuchter, MD Editor in Chief: George D Lundberg, MD Acknowledgements: ''We thank Prof. Boris Bastian and Prof. Stephen Hodi for overall guidance and for pointing us to key pathways and genetic tests and Dr. Gavin Gordon for his thoughtful comments and proof-reading of this document.'' Abstract Melanoma subtypes are defined based on the status of key melanoma genes, pathways, and their combinations. Each subtype is defined by one key oncogene/tumor suppressor (such as BRAF for subtypes 1.1 to 1.4 and c-KIT for subtype 2.1) either by itself or in combination with others that play a supportive role (such as PTEN, AKT and CDK4 in the case of subtypes 1.2, 1.3 and 1.4). The subtype table below is generally organized by order of importance of associated oncogene/tumor suppressor, prevalence and potential for therapeutic intervention. Some of the oncogenes that define subtypes are capable of serving as the dominant oncogene and putative point of intervention for therapy, whereas others play a supportive role and typically co-exist with the mutations outlined in the first table. There are, of course, melanomas that do not fit into the currently defined subtypes, as well as types that do fit into an established subtype but do not respond as predicted. This may necessitate splitting of that subtype. Click here to read the peer-reviewed Melanoma Model paper in PLoS One: Vidwans SJ, Flaherty KT, Fisher DE, Tenenbaum JM, Travers MD, et al. (2011) A Melanoma Molecular Disease Model. PLoS ONE 6(3): e18257. doi:10.1371/journal.pone.0018257 Table of contents: [click on a section below to read details about that subtype, including drugs, trials, and publications] Section (subtype) Description Immuno Treatable Disease Immuno Treatable Disease http://therapy.collabrx.com/melanoma/subtype/Immuno_Treatable_Disease Subtype 1.1 Aberrations of the MAPK pathway http://therapy.collabrx.com/melanoma/subtype/Subtype_1.1 Subtype 2.1 Aberrations of the c-KIT pathway http://therapy.collabrx.com/melanoma/subtype/Subtype_2.1 Subtype 3.1 Aberrations of the GNAQ/GNA11 pathway http://therapy.collabrx.com/melanoma/subtype/Subtype_3.1 Subtype 3.2 Aberrations of the GNAQ/GNA11 pathway http://therapy.collabrx.com/melanoma/subtype/Subtype_4.1 Subtype 4.1 Aberrations of the NRAS pathway http://therapy.collabrx.com/melanoma/subtype/Subtype_4.1 Zelboraf Refractory Aberrations of the MAPK pathway and/or AKT/PI3K pathway http://therapy.collabrx.com/melanoma/subtype/Zelboraf_Refractory Most recent revision released on RELEASE-TTF-2012-12-13

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

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