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.

Expand/ Collapse Topic
 
Replies By
View Topic
robbier's picture
Replies 3
Last reply 8/5/2014 - 9:50am
Replies by: robbier, RJoeyB, Ginger8888

smiley  Bringing everyone up to date.  I had biopsy April 14, then Biopsy April 24, sent to MD Anderson May 26th of 2014.  Came home, Biospy June 20th here at home (with home being south alabama).  I live in  a small town that is approxiately 20 to 30 minutes from Gulf Shores, Al.  Had a pet scan July 23, saw my doctor yesterday.  Being sent for a Bone density test.  The findings on Pet scan states: Metastatic disease suspected in the left symphysis pubis and right mid femur.  (2) Activity with the right chest compatibile with recent surgery as well as midline abdominal pelvic incision.  So bone test, then back to see Doctor to discuss clincial trail, wich Yervoy was discussed.  I have that BRAF gene, and that could mean a combo of drugs. 

I have  already told doctor that when I do the medicine, for them to go ahead and put port in, I only have one vein that can be used due to lymph nodes missing from my right one.  I was stuck three times Wednesday befind finding my vein for the pet scan, (veins deep) and small in hand, they blow.  Stuck twice onThursday at Doctors office, then the vein qit giving that blood they wanted. 

I keep my head up, and I still have a strong faith in God and believe in him.  I know that is where my strength comes from in handling this situation.  So any infromation someone might have that can help me make a good deciision on medicine or treatment will be benefitul.  

 

Iam now considered Stage IV MIB for Melanoma, I have had no kind of treatment and been battling since august 2011.

robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 8/5/2014 - 4:11am
Replies by: rick1981, HelenQLD

Hello-

After my father in law noticed a small lump on his side in spring of 2013 his GP doctor told him to watch it. Fast forward to January 2014 and he had the lump removed. It was a melanoma tumor the size of a softball. Scans later reviewed he had lung mets along with additional spots on his spine, bone, liver, splean, and abdomin. They did one round of Ipi before learning he had a BRAF mutation. He was put on the Mek combo and his LDH levels seemed to return to normal in April, may & June after being in the mid 700's. Two weeks ago he had an onc appointment and although his scans showed to be mostly stable he had two soft tissue spots grow on his right side and his LDH level was back to mid 700's. The onc started him on Ipi today, but his blood work showed almost a 900 LDH level. My concern now is he is already in so much pain (on morphine and delada) with it so far progressed I don't know if he will be around to see if the Ipi had worked. We have a great melanoma oncologist at a great facility I'm just concerned it's too late. 

Login or register to post replies.

robbylee's picture
Replies 8
Last reply 8/5/2014 - 12:29am
Replies by: robbylee, dnovak, Phil S, Anonymous, curious12

Our 15 Month old son was just diagnosed with Pediatric melanoma. Is there any information that outlines the possible causes of mlanoma in children this young?

Login or register to post replies.

Happy_girl's picture
Replies 4
Last reply 8/5/2014 - 12:01am
Replies by: FayFighter, SABKLYN, Anonymous

Does anyone have an opinion about dr coit at memorial Sloan Kettering?

Login or register to post replies.

Gene_S's picture
Replies 13
Last reply 8/4/2014 - 7:13pm
TY BOLLINGER GIVES YOU A GREAT LITTLE E-BOOK ON SUGAR

Just this week I got a copy of Ty Bollinger's latest attempt to help you with information.  He calls it "Sugar -- The White Death."  Most of you know that Ty is a fellow author on natural cancer healing.  His book is called "Cancer -- Step Outside the Box!"  You'll find this great four-page article from Ty about sugar here:

http://TheTruthAboutCancer.com/download-sugar-white-death/

If you want to know all the variety of sugars and the health problems they cause, please read this short e-book. 

 

 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 11
Last reply 8/4/2014 - 4:42pm
Replies by: Anonymous, sweetaugust, JerryfromFauq, kylez, RJoeyB

I just learned that my wild type melanoma tumor has the NRAS mutation.  I have had one recurrence since initial diagnosis that was surgically removed.  I am stage III after the last tumor removal.  

What are some of the potential treatments for this tumor mutation?

Thanks.

Login or register to post replies.

cc's picture
Replies 2
Last reply 8/4/2014 - 4:14pm
Replies by: cc, Janner

Good morning, 

   My dermatologist called on Friday morning stating that a  mole that I had removed last week from my lower leg was found to be positive for a "very early" melanoma.  Of course, I wasn't prepared for that and don't think I asked the right questions.  I did ask him how he knew that it was very early, and he said that that was what the pathology report stated.  He then told me to come cack in on Thursday of this week to his office to have it removed.  i have been calling the office to try to get the data from the report, but have not  heard back.  From reading around on this site, I think that he must mean that it is in situ.  My question is, do I try to schedule an appointment with a melonoma specialist, even if it is a "very early" melanoma?  I am not far from the University of Pennsylvania, and would go there, but I am not sure if  I need a specialist for an early melanoma.

 

Thanks!

  CC

Login or register to post replies.

arthurjedi007's picture
Replies 3
Last reply 8/4/2014 - 10:20am
Replies by: Maureen038, tcell

Just thought I would mention Siteman in Saint Louis via Dr Linette has Merck's EAP PD1 pembroluminab if anyone needs it.

We decided to keep going to Mayo for now though. Especially the next visit for the August 13th scan. This will be my first scan with it. So far they never have kept me on a medicine after it's first scan. I really hope they keep me on it. My Mayo doc says not to worry so I try not too. I do know 2 and maybe 3 Mayo docs will be looking at the scan and deciding. I leave it up to God and plan to have Dr. Rosenberg's number in my phone.

 

Login or register to post replies.

gaby's picture
Replies 15
Last reply 8/4/2014 - 7:08am

HI

My husband is stage 3A since July 2012. He is with interferon pegylado treatment since October 2012. Since his diagnosis that we have no holiday. My husband is terrified of being under the sun, so is very difficult to go out somewhere. I do not know how to solve this issue. My husband used sunscreen but the sunscreen does not give the peace. He is now 40 years old.

Appreciate any advice

Regards

Gaby

Login or register to post replies.

tcell's picture
Replies 9
Last reply 8/4/2014 - 5:44am

So I had another appt with my onc yesterday and we scheduled the first Ipi infusion for Aug 13.

the idea is to have about a 2 week washout for Mekinist which I stopped taking today. The I will stop Taf 5 days before the infusion and continue 3 days after each infusion again. So in reality it is a parallel treatment as 5 days is no real washout.

Due to my high tumor burden in chest / lungs, abdomen, liver and bones this may become a bumpy right  and if Ipi does not kick in within a reasonable timespan I run the risk of not making it. My LDH is 800 now.

next staging is only going to be after all 4 infusions as according to my onc it would not change anything. He did not want to make any statement on when to declare Ipi a failure and apply for the  Anti-PD1 EAP but stated that nobody could tell if I would be in the condition at the time to still be eligible.

all in all this looks like the start of a tough 3 months in a dark valley with the only hope that I will be able to celebrate my 36th on Nov 4.

if anybody has a better idea than what I have been planning now or any hints for my Ipi experience I would be grateful!

thanks to you all,

Chris

Login or register to post replies.

Happy_girl's picture
Replies 2
Last reply 8/4/2014 - 1:09am
Replies by: Socks, brittanyx

I had been posting anonymously- but after encouragement from several people, I created a profile.  I am so thankful for those who has posted and shared their thought and opinions.  I feel like I am all consumed by my diagnosis right now and constantly afraid.... Afraid that I'll miss my baby girl grow up....leave my best friend.

* I believe next I will have a clnd.  My sln was originally said to be clear- but then 4 months later said to have a microscopic cell.  I'm so uncertain about what is coming next.

thanks for your thoughts!

~ also.... Thoughts on interferon???

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 8/3/2014 - 8:18pm
Replies by: Ginger8888, Anonymous

I'm stage lllb and had surgery on the 24th of June to take a my lymph nodes out and was wondering how long you guys had to wait until starting interferon after surgery?

Login or register to post replies.

madhatter84's picture
Replies 5
Last reply 8/3/2014 - 6:36pm

Hi everyone,

 

I haven't posted on here before - living in the UK and on trials with the NHS. My blog gives a good overview but basically I was diagnosed Stage 2 in May 2011 and that was upped to Stage 4 in Sept 2013 with 2 brain tumours removed and an inoperable pancreatic tumour diagnosed. I was then put on Vem however have recently been informed that I've got 5 brain tumours after having had WBR in May 2014. They are small but present (told a couple of weeks ago). I've now been pulled off Vem and put onto Yervoy - had my first infusion on Monday and so far no side effects with the hope of Gamma on the 5 tumours in my brain if they haven't grown. 

My question is are there any experiences of Yervoy and in particular with brain mets? They are the ones that are worrying me quite a bit. I still am working full time and at the moment haven't got any side effects from them (had a few headaches but no mobility or speech issues which is what I really want to avoid). 

Thanks in advance!

 

Andrew

http://positivelechley.blogspot.co.uk/

Login or register to post replies.

Dear all,

I haven't written for a some time. While building a house, going back to work, taking a lot of responsibility in raising our 2 year old, my husband had also a hard time fighting this disease. In February it was clear that Vemurafenib couldn't stop it anymore, in April he started 6 weeks radiation to his parotis and neck (only lymph node mets were left after partial response of Ipi in 2012 and Zel and Vem for more than a year) while staying on Vem. May/June he discovered two more subcutanous mets in his axilla. Luckily EAP for Merck's Anti-PD1 started in Europe and after almost four weeks of waiting he received his first infusion. We are more than happy becaus the fear that mel could spread to more areas is big.

My husband received the first infusion last thursday. On the same day we noticed a reddish coloring ot the area of visible tumors in parotis and neck area. Until today the coloring has increased, the area feels very firm, seems to swollen, and the area is very painfull. My question, has anyone experienced this under PD1, especially right after the first infusion? We hope that this is a good sign but it is a little frightening. My husband had a similar but much more light reaction to Ipi.

My thaughts go out to all of you brave melanoma fighters.

All the best, Jenny

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 8/3/2014 - 9:27am
Replies by: Anonymous, vlmd1986, SABKLYN

Hi!

I'm hoping you all can ease my mind...Three years ago I was diaganosed with Stage 1b melanoma and I had a wide excision and moved on with life. I've been seeing a derm 2-3 times a year since then. In the winter time I was having stomach pain and a general dr sent me for a ct scan which revealed enlarged nodules the dr then suggested going to see an oncologist just in case my very early stage of melanoma had spread. Long story short my enlarged nodules have not grown so they do not believe there is any reason for metestatic cancer. In the meantime they did a shave biopsy on one of my moles last week...I called today for the results and they stated the results were negative but the doctor wants to review the slides before giving the all clear and said he wouldn't have the final results until monday.

 

Long story short does anyone know if its is typical for dr's to review the pathology slides? Also since it was just a shave biopsy and there wasn't much taken out can there be false negatives? I'm just tyring to figure out why if the results where negative why can't they give me the all clear...It's already been a week and I really hate having to wait any longer. I'm sure there's nothing to be worried about but I would love any input on this. 

 

Thanks :)

Login or register to post replies.

Pages