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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slorlando's picture
Replies 34
Last reply 2/27/2014 - 7:03pm

Hello, this is my first time posting on this site so please forgive me if I am in the wrong place.

My 5 year old son had what the dermatologist thought was a pyogenic granuloma removed from his chin in early December via shave.  After the pathology report was received, he was diagnosed with an atypical spitzoid neoplasm.  However, the biopsy was showing characteristics of a benign tumor and melanoma at the same time.  The tissue sample was then sent to Sloan Kettering Cancer Center for an expert opinion and we are still waiting on the results of that pathology report.

We met with a plastic surgeon because the doctors want to my son to have the remainder of the tumor removed after the 2nd biopsy comes back.

I am confused about how these spitzoid tumors can behave in two different ways?

I haven't been able to find much info on the web when it comes to children with this type of condition. 

Any advice and insight would be greatly appreciated.

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Reneezd's picture
Replies 4
Last reply 1/8/2013 - 1:03am

Hello,

Does anyone know what amount of the water soluable Thiamin is recommended by Dr. Oz?

Any good ideas on treatment of Zelbraf rash?  

Still feeling a little overwhelmed by the nurse saying that Matt will be on the the PX866/Zelbraf until it stops working.  I guess I was hoping it would put him into remission.  I am reading posts now to find if anyone has had better luck with going off meds altogether after a certain therapy?  Any other homeopathic remedies?  Matt's melanoma is stage 3 and the doctors say it is "in his blood", not sure what that means.  He had a lump on his face that already dissappeared with the clinical trial meds and there were 2 spots on his lungs that were too small to biopsy which was the reason for doing the clinical trial and not the radiation they had initially prescribed.

Thank you,

Renee

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Alan Muir's picture
Replies 8
Last reply 1/8/2013 - 5:34pm

It's been over 3 years since Stephanie passed away.  I now have a new girlfriend.  Her daughter, age 26, was diagnosed with melanoma late last year.  It appears that she is stage III, as a few mm cells were found in her sentinal node.  Her onc is recommending LND and Interferon.  She's being treated at Bay State hospital in Springfield, MA.

Of course, my girlfriend is worried sick.  I'll do what I can for her and for her daughter.

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jennbe9's picture
Replies 7
Last reply 1/9/2013 - 1:41pm
Replies by: jennbe9, vivian, Anonymous, Reneezd

Has anyone had a melanoma in transit removed after a full lyph node dissection? If so , did you have to have a drainage tube?

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NYKaren's picture
Replies 20
Last reply 1/8/2013 - 6:37pm

Hit everyone,
After 17 days on Zelboraf, I am doing well. I saw Dr. Wolchok this past Thursday. As soon as he walked in the room, he said "wow"!
Since my mets are mostly on my face, it's easy to see noticeable regression/flattening of mets. And the several scalp mets that were (for the first time in 2 yrs.) big enough to light up on PET, are all completely flat. On some, the pigment even disappeared. He said the pigment might not all disappear on my face, even if the Mel completely resolved. I can feel that the Mel in my ear has gotten much smaller and I can hear out of it. Must see the ENT to confirm/see what's left.
As for side effects, I'm getting numerous skin tags or small warts around eyes and just found a big one behind my knee today. Some leg pain and mild fatigue. I did start taking Benfotiamine after reading Snickers' recommendation, who knows' maybe that's helping. I told them that I have to get rid of my "Yervoy mentality" that says that side-effects = response. He laughed but for those of you on ippy did say that they're revisiting that theory.
I asked him at what stage in past 2 years did he think I went from BRAF - to positive, and he THINKS it's more likely it was a false negative...they might have tested healthy tissue-- but really, who knows? Who cares??
I know I might develop worse side effects but for now I'm feeling surprisingly good.

My thyroid FNA was negative! (And yes, when they stuck the needle in twice and wiggled it around, it hurt).

Al, I hope I'm following in your footsteps!
Love to you all,
Karen

Don't Stop Believing

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bikerwife's picture
Replies 6
Last reply 1/6/2013 - 2:32pm

I haven't posted lately but Lynn is in his 7th month on Zelobraf.  He had scans in November it showed some shrinkage and some growth his Dr. said he considers him to be stable. Blood work is good. Some side effects lost lots of hair has some joint pain. Overall he's doing pretty good.  Our main problem is the appetite and weight loss. He lost so much weight after WBR and has never been able to gain it back.  If anyone has any suggestion I sure would be thankful. We are at the point he feels bad about the way he looks. I check on y'all daily and pray for each of you.

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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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