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
mahdusia's picture
Replies 13
Last reply 6/1/2011 - 8:59am

Hi,

I have a problem with getting directly to main investigators/people responsible for running clinical trials. My father is stage IV, with mets in brain and critical condition of liver. Our doctor proposed the mixed chemotherapy, which I think is a last resort in this case, convincing us there is no possibility to get e.g. PLX4032. I was trying to find some information about PLX via Genentech, but the only answer I got was "please contact your physician or Roche", and for the application forms to Roche nobody has yet answered (sent 5 days ago)

Does anybody have any direct contact to hospitals/people and also requirements to be approved for PLX4032 clinical trials? I'd be absolutely grateful for information.

Login or register to post replies.

Teodora's picture
Replies 14
Last reply 5/31/2011 - 7:04pm

Hello everyone,

I am new to this forum where no one wants to be, but we all found oureselves on .I hope to find some advice and support troughout what seems to be a very  lonely journey due to the rarity of this desease.

Here is a brief history of it:

In June during a family  trip/me and my husband/ to my native country of Bulgaria I  suddenly started bleeding:the bleeding was  spontaneous and intense with no previous pain or any other symptoms .On the second day they rushed me into the ER where where they immediately  performed emergency procedure to clean me up.The doctor said I seem to have a cyst on my uterus  that could be giving me problems further down the line and he  suggested hysterectomy at some point as a precaution measure.We barely made it back  home to the US, when the  next month I had another massive bleedig:a life saving hysterectomy was performed to removed my uterus with what showed via ultra sound to be a fibroid attached to my utterus and cervix.

I merely made it because my haemoglobin levels hit the critical 6 number  where I needed blood transfusion.One week after the surgery,still weak and exausted they called us in and gave us the devastating news: the tumour was malignant melanoma, which I never heard of/on the uterus/.They doc didn't sound  very hopeful, he said is a very rare and aggressive kind of cancer and he gave me no more than few months to live.No need to say we were shocked and devastated and tottaly blown away;I was preparing to go quetly.

Amazingly, the subsequent CAT scan didn't show anything.At this point I was referred to an ovarian cancer oncologist at the Maine Medical Center in Portland, Maine.The PET scan  they did  in August 2010  came back clean. Everybody was totally puzzled.I had a second surgery with my doctor to remove tissue and  lymph  nodes-the biopsy came back negative for cancer.My second PET scan 6 weeks ago  came back clean too.Anyway the pap smear my doctor  made on the same day we were discussing the pet results   showed  up some suspicious cells.I've  had a  biopsy 20 days ago and the result came back  positive for melanoma again.Luckily it was a very, very tiny spot on the top of my vagina near the surgery that was just taking a root, around 1 mm big.The oncologyst said she we were lucky to find it  at  all.They presume this were few cells from the original tumour that started  growing there .They didn't see anything else,she said my vagina looked pink and clear  except for that little spot with a ring of inflammation around  it.I am about to start 5 weeks of radiation to secure the area from any residual melanoma cells, also I have been referred to an oncologist  to discuss possible further  treatment.I did a lots of research on the Internet and I am dreading they will offer me Interferon/ or wait and watch/: I have a history of major depression on and off  and I have  asthma/breathing problems, sometimes experiencing  panic attacks, controlled by Xanax.I've heard this treatment is definately No No for people with history of  psychiatric  problems.Also I have almost zero tolerance to med's side effects with even simple over the counter meds making me sick with vomitting and nausea, like drammamine, allegra,doxycicline .Interferon  sounds like a very toxic treatment with minimum effectiveness so I already  pretty much  made my mind p that  I am going to opt out of it.Also I read radiation is not very effective on melanoma as they say melanoma is often deemed  radio resistant.

I  contacted Dana Faber Center in Boston and required  expert consultation on possible treatment options:they haven't come back to me yet.

Any advices/recommendations?I know it varies individually from person to person and  that is my main worry.Ho do we know what will work  best for us and what course of action to take? 

Thanks  to everyone that will come back to me with any advice,

God Bless,

Teodora

 

 

 

 

Login or register to post replies.

mygirlmaddy's picture
Replies 11
Last reply 5/25/2011 - 9:43am

After a year and three months of nothing but bad news, and treatments that have caused worse side effects than anything the cancer has done with no success, I just want our lives to be normal again.  We have been through two surgeries, Ipi clinical trial, IL2, BRAF testing only to find out he doesn't qualify, Ipi compassionate which has swelled his pituitary gland so it is no longer functioning.  I know people have dealt with this for longer than we have, but our lives are constantly being turned upside down.  We have a 13yo daughter we have to leave home to deal with this on her own, while we trek to Boston for treatments or he ends up in the hospital unexpectedly.  If we had just a glimmer of good news, I might feel differently, but now we are looking at going to NIH for three weeks for TIL treatments with even less hope of success than anything else we've tried.   His disability is almost out, his fmla time is up.   In less than three months we will be without income and without health insurance unless we pay exorbitantly for it.  Social Security/Disability has a six month waiting period and you have to prove that the condition will end in your death.  Just needed to vent.  I would never say any of this to my husband.  I would encourage him to fly to mars if it might make a difference, just feeling overwhelmed with the news that yet another treatment has failed him.

Live in each season as it passes; breathe the air, drink the drink, taste the fruit, and resign yourself to the influences of each. Henry David Thoreau

Login or register to post replies.

could you all go down this row of posts and read the one from entitled "melanoma back after 22 years" I feel this person could use the advice of people familiar with the Canadian Health Care system

thanks,

dian

Login or register to post replies.

Terra's picture
Replies 14
Last reply 5/29/2011 - 10:59pm

I guess I am just looking for words of encouragement.  Eght months ago when I found out I was pregnant and Derek was on chemo I knew it was not good at all.  He had made an appoint last summer for a vasectomy but canceled when he had to have lung suergery and I took birth control.  But there we were.  He didn't want to have it and understandably so he was on chemo and stage 4 and we have two young kids 4 and 2 now, but int he end I knew i couldn't have an abotrtion and felt very strongly that I was either going to kill him or kill the child with my decision/.  It has been a rough road, we didn't want three kids, now in a couple of weeks we wil have three kids and love them very much, but he is facing death and the stress of everything is weighing on him,.  Most of the time he is in a relatviely good frame of mind, we have continued help adn child care but I am worried.  His mother made comments int he beginning that I had maybe done this on purpose and recently members of his fmaily have made comments ab out how much stress this new baby will cause and that it is unthinkable this is all happening.  I really do at times blame myself and wonder how I will feel if he does die and how much of a part this new baby may have played and my decision to keep it.  I can't go back now, but knew I couldn't deal with losing them both and with having an abortion but I am having such an emotional time feelling guilt of what he isgoing thorugh.  I really hate life right now and can't heloing feeling responsible for his feelings of stress and his possible deteroiation with melanoma, which I know is happening hnow becasue he feels it.

 

Very very scared adn upset, Terra.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 5/29/2011 - 4:18pm
MariaH's picture
Replies 12
Last reply 12/15/2011 - 9:34pm

My husband Dave is 2 1/2 years out from a Stage III melanoma diagnosis after interferon.  Last week my 30 year old brother (after severe abdominal pain and weight loss) was diagnosed with Stage IV inoperable singet cell cancer (still running pathology to determine where it originated).  He was transferred to Roswell (the room right next to where my husband did his LND recovery) where they said there was nothing they could do, and he will be coming home soon.

My problem is this - after 2 1/2 of years of positive attitude, my husband is paranoid that his will come back now.  He is taking this VERY hard (and trust me, he's a tough guy).  When my brother was explaining his symptoms, my husband admitted that he has had several of the same.  He goes back for his 6 month check up on June 10, and is now asking to have scans done.  I don't know what to do to help him  - he is scared that he will be in Mike's shoes someday, and so am I.

Also, if there are some websites for us to help with my brother's prognosis (care networks or such) that you have used to help you through "end of life" issues, I would appreciate it.  It is very hard to stay positive for my husband and let my emotions out with my brother (who is borderline mentally retarded and lives with my parents).  I feel lost, overwhelmed, angry at the docs, scared that Dave's will come back - I'm a mess.  And I just need to vent.  I'm sorry, I know this may not be the board to post this on, but it was so supportive when Dave was first diagnosed, and I haven't found another with the support and love this one has.

Maria

Login or register to post replies.

gtown's picture
Replies 12
Last reply 5/26/2011 - 10:22am

Hey what's up,

 I have been looking around for a cancer "hostile" diet but have found alot that had their own agendas or seemed less than reputable. I have had cursory discussions with my doctor but I figure you guys could point me to a website that would have the info I need. Also I'm waiting for the results of my SLN biopsy, the surgeon said the lymph nodes looked normal but he could not say what was happening at a cellular level. Has anyone had normal looking lymph nodes that turned out to be cancerous? Just curious. 

                                                                                               Gtown 

Login or register to post replies.

TracyLee's picture
Replies 7
Last reply 5/25/2011 - 7:42am

Hi y'all,

Well, I'm going to be the first Ipi patient at my cancer center, and probably in all of DE! I figure the upstate folks get sent to Philly or Baltimore. I go in on Friday at 9 a.m. in Lewes.

God has blessed me with the ability to drive 20 minutes to my treatment, instead of almost 3 hours away.

Any suggestions or ideas, other than dress comfortably and take a good book? Both my husband and best friend would like to go with me, is that even necessary? (They've both missed a LOT of work just hauling me back and forth for four surgeries this year). I appreciate their support, but if I really won't need them, I'd like to "save" them for another time.

Posse, here we go. I told the physician's assistant doing my assessment, that I would have an excellent outcome, with no side effects, and set the gold standard for any folks who come after me!

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

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 27
Last reply 7/13/2011 - 5:50pm

I live in British Columbia, Canada. I am a 63 year old man who had a superficial spreading melanoma on my lower back removed 22 years ago. I had this mole on my back for 10 years and my family doctor said it was nothing to worry about. It was the size of a quarter, and was removed when I saw a dermatologist  after it tingled when I brushed my hand against it. Fast forward to the present, about 5 months ago I noticed a small lump on my back , 3 inches above the site of the original melanoma. My family doctor said it was nothing to worry about, but when I noticed it getting bigger and starting to hurt, I said " I want it off". It turned out to be melanoma in a lymph node. I went to the B.C. cancer agency in Vancouver, the oncologist looked me over, and I was given a full body FDG pet scan.  The pet scan was negative.  There was no Sentinal node biopsy, and nothing else done. I was told to see the oncologist in July. The last 3 weeks. I've had diareha which is unusual for me, and I have soreness in my armpits although I can't feel any large glands other than a pea shaped gland under each armpit. I was surprised the Cancer oncologist  didn't mention any chemo or other protocol to help me beat this. I am scared and would appreciate any advice you can give me. I pray for everyone going through this disease. Any prayers you can spare are much appreciated.

Login or register to post replies.

Anonymous's picture
Replies 11
Last reply 5/25/2011 - 6:25am

Hi all, I am from South Africa.

I found this site purely by accident and am quite new to this type of forum. Not sure if I am using it correctly but here goes with crossed fingers that some responses will be forthcoming! I have not been able to find a topic similar to what I have.

Skin cancer identified as malignent melanoma stage1 removed from outer right ear lobe 2006
Started coughing in Jan 2011 and initial x-ray revealed lesion in lower right lung.

Subsequent CT Scan confirmed this but all blood and sputum tests were negative for cancer. Doctor advised me to wait 6 months and have scan repeated to see if any growth in lesion evident.

Visited Oncologist for annual check-up following ear surgery and I told her of recent developments.
She suggested a PET scan and this confirmed possible cancerous tumour.

Surgery suggested and Metastasis Malignant Melanoma stage 4 removed April 2011 (3,5cm by 5 cm cut away). However, no signs of any spread identified.

Saw Radiologist to discuss possible treatment and wait & see approach suggested due to lack of evidence that the mel had spread to any other part of my body. Will revisit in August for further X-ray and blood test.

My concern is, will this spread or not. What I have read up so far indicates that stage 4 is incurable. However, if it has all been removed then surely this will not happen or am I wrong? Is there a possibility that it could already have spread but just does not show with the tests they do? The negative possibilities are freaking me out.

Any input will be greatly appreciated or additional info supplied if required.

Login or register to post replies.

Login or register to post replies.

HollyShoe's picture
Replies 7
Last reply 5/24/2011 - 12:00am

My husband and I just moved to Montgomery AL and I am going to need a new, local DERM for my 6-month MEL follow-ups. Can anybody recommend someone? I was seeing Dr. Venna/Dr. Peck at Washington Hospital Center in Washington, DC so I am looking for the best in the Montgomery region. THANKS! -Holly S.

Login or register to post replies.

My husband and I just moved to Montgomery AL and I am going to need a new, local DERM for my 6-month MEL follow-ups. Can anybody recommend someone? I was seeing Dr. Venna/Dr. Peck at Washington Hospital Center in Washington, DC so I am looking for the best in the Montgomery region. THANKS! -Holly S.

Login or register to post replies.

My husband and I just moved to Montgomery AL and I am going to need a new, local DERM for my 6-month MEL follow-ups. Can anybody recommend someone? I was seeing Dr. Venna/Dr. Peck at Washington Hospital Center in Washington, DC so I am looking for the best in the Montgomery region. THANKS! -Holly S.

Login or register to post replies.

My husband and I just moved to Montgomery AL and I am going to need a new, local DERM for my 6-month MEL follow-ups. Can anybody recommend someone? I was seeing Dr. Venna/Dr. Peck at Washington Hospital Center in Washington, DC so I am looking for the best in the Montgomery region. THANKS! -Holly S.

Login or register to post replies.

Pages