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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mrsmarilyn's picture
Replies 3
Last reply 4/27/2011 - 5:06pm
Replies by: dawn dion, lhaley, MichaelFL

Hello-My brother just received good news- 10-12%  reduction in the two remaining tumors, based on todays results of PET CT Scan!!  Currently his liver enzymes are elevated to level 1 - not sure what that means.  Also continuous high fevers and chills.  But his trial dr. said to keep going on current doesages.   Anyone else with that side effect-and please check in with any updates on this trial.  We are looking forward to throwing NED party hopefully soon!   Thanks again for all your help-and lets hope this good luck continues.

Love and best wishes to all.

MrsMarilyn

sister of Gary (stage IV)

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Jaime.30's picture
Replies 4
Last reply 4/27/2011 - 3:49pm

Hi! I just wanted to stop in and say Happy Easter to everyone.  My hubby is doing great and is two years from diagnosis....still NED and going strong.  We are getting ready to move to the country on 5 acres to enjoy a little slower paced cancer free life.  Oncology in June, hoping everything stays all clear.

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boot2aboot's picture
Replies 8
Last reply 4/27/2011 - 2:18pm

Hi,

i need all your experienced help asking the ONC questions about  the tumor taken out of my armpit(in earlier posts)...the office called today to give me the news and i haven't called back until i am READY...i read the brochure thingy on this website and of course other stuff on internet and info the hospital sent me home but i still have WIDE gaps of knowledge... i still have questions...like, i read some tumors are hormone receptive and i still don't quite understand things like'mitotic'...and still trying to decifer BRAF and DNA analysis...and on and on...i know i am to hook up with a medical ONC practising with my surgeon and they have already planned immunotherapy for me..i also know i get 'scanned' in 3 mos again..but right now i just need to understand status and pertinent quesions I SHOULD BE ASKING NOW

thank you for your help

boots

don't back up, don't back down

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LampChop's picture
Replies 14
Last reply 4/27/2011 - 2:10pm

Hi.  I am 38 years old and was diagnosed with Stage IIIB on my upper arm in May 2010.  I had two surgeries to excise the area.  Two lymphnodes removed, but no cancer found.  There were however micorsatellites in the excision area - hence the IIIB staging.  I met with MSK and the recommended "watch and wait".  I went to NYU and they recommended local radiation.  I had a month of radiation in October 2010 at Hackensack Medical Center in NJ because it would be easier to do than to go into NYU every day.  (I live in NJ and have a 2 year old.)

My recent CT scan showed something on my liver.  I had a follow up MRI which showed two hemangeomas (no big deal) and something else that is 6mm.   The radiologist noted it as atypical and suggested another MRI in 6 months.  My oncologist at Hackensack hasn't offered any other course of action.  I feel he isn't very proactive with me.  I feel like a number there.  I don't feel like I get the attention I deserve.  I hate calling the main number and pressing buttons to get to talk to someone, anyone. 

SO --- my question to all of you is --- how did you decide upon your melanoma oncologist?  Did you "shop" around?  Do you really like the practice?  The staff?  The doctor?  The nurses?  Did you travel a great distance to find "the best" doctor for you? 

Thanks for any insight!  I really need to find another cancer center and I guess I'm just looking for some insight into how others chose theirs.

- Kristin

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mommydog's picture
Replies 7
Last reply 4/27/2011 - 1:55pm
Replies by: Anonymous, mrsmarilyn, dawn dion, mommydog, deffk1105

My husband is starting his fifth week of GSK's  Braf/Mek trial.  The only side effects he has had prior to now are a fever and chills occurring 4 hours after his dose and lasting about two hours.  This did not occur every day, and when it did, it was with varying degrees of intensity.

For the last 24 hours, he has had continuing fever and chills.  Sometimes the fever breaks for a short while, but returns.  My husband is afraid to call the doctor about this for fear of being taken off the trial, which otherswise seems to be working.

Has anyone had these symptoms?  Any advice? 

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Melanoma Mom's picture
Replies 5
Last reply 4/27/2011 - 5:16am

I know there has been some discussion on the boards about pegylated Interferon recently. An article that Aim At Melanoma posted today makes me wonder if it would be 1) possible 2) beneficial to switch from the standard Interferon to the pegylated? Our son has four months completed of the standard  kind, finishing treatment in December. The major negative of peg. in my mind would be the long duration - five years - BUT if it were more beneficial at fighting off a recurrence, I believe we would easily accept that length. He has very little side effects from the drug so we would basically switch (if possible) because of any benefits from longer delay of recurrence.

Heading to Dana-Farber later this week for a check-up and wonder what they will say to this question ....

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dawn dion's picture
Replies 6
Last reply 4/26/2011 - 10:49pm

Hello All!

So since I can't find anyone to chat with at 3 am (can't imagine why) I thought I would post instead!   I go for my first set of scans, since starting the GSK BRAF/Mek trial, on Thursday.   I know we all have "Scanxiety" and part of me really feels like everything is going to be "ACES" but then there is the other half that has all this wild crap running around in my head and I am just waiting for the Dr. to sucker punch me again.  To those of you who are "old pros" at this game, does this ever go away?  I know everyone says just live your life, but are you ever really able to make plans past tomorrow?  I catch myself doing so and then I think "oh wait".   Does this monster ever stop pissing you off?  Does every ache and pain ever stop freaking you out?   Do you ever stop questioning everything?   When you get to NED (where I hope beyond hope to be Thursday) or even stable, do you ever get a sense of relief? Or do you just sit and wait?  This makes me CRAZY!!!!!!   Even though this board scares the hell out of me sometimes I love it here because I know I am not alone - it's not like I can go wake up the hubs and say "so here's where I am" and truly expect him to understand.  He will try to understand, he will be compassionate and loving and tell me that he understands but I don't know that anyone else truly gets it.

So that's my latest rant - thanks for reading.  Much luck to all of you!

Hugs and Smiles

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Nabokov's picture
Replies 3
Last reply 4/26/2011 - 9:01pm
Replies by: MichaelFL, nicoli, CKasper

Hi, everyone

I am a writer working on an article for oncology practices, to encourage them to have someone at the office who helps patients understand how much their insurance will pay and tell them about assistance programs available if they need them for their out-of-pocket portion.

Some oncology offices already have such a person. I'm interested in hearing about experiences from patients.
Did you have someone at the practice who was knowledgeable about insurance to talk to?
Was information given to you at the beginning about how much your costs would be, or did this come after you got the bill (and, perhaps, were shocked).

If you would like to respond here, that is fine, but also I would like to interview someone with experience (good or bad) and how the oncologists office did or could have helped you understand things.

Please contact me at marian.wiseman@earthlink.net

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Suzan AB's picture
Replies 5
Last reply 4/26/2011 - 2:52pm
Replies by: Anonymous, Suzan AB, LynnLuc, MichaelFL

Hello All!

So my husband and I were going over treatment options the other day and we began to brainstorm (I know scary) and we realized that we have never heard of melanoma or any other cancer involving the heart muscle.  Does anyone know if there has been an investigation to see if this is true?  Hypothsis:  Heart tissue is resistant to cancer.  I realize that tumors grow by the heart, around the heart, etc. because I have a pesky met kissing my heart...its in my left lung ever so close to my ticker!

Out loud, typed out in back-in white...I have lung mets...phew...a few weeks ago I underwent a Flex bronch. VATS wedge resection to my lower right lobe.  The two other nodes were too deep in my lung and my doctor wanted a quick recovery time, so next month I will be asking to be treated with IL-2 and a dash of GSK Braf.  Call me silly, but I believe this might be the treatment for me...

Thank you to all of you old-timers and newcomers who continue to keep this place open for folks like me who appear and then disappear, like Houdini!

My best to all with many Blessings,

Suzan AB

Presently...One Day At A Time.

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wgalinat's picture
Replies 5
Last reply 4/26/2011 - 12:39pm

All scans were clean and for the first time since the intense radiation damage from the trial, my

kidney "numbers" actually improved.  Yippie !   Now 10 years out from the primary, and 5 years

out the NIH clinical trial.  Keep up the hope !  It works !  Not a hero, but a survivor !   Warren G

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

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MsKage's picture
Replies 11
Last reply 4/26/2011 - 6:02am

Hello -

SNB in April, one positive node.  Underneath the scar from that node, I had recurrent cysts which were repeatedly drained and surgically removed twice. Now there is a new, hard (bone hard) lump in the same place.

I had an ultrasound yesterday and the report says "highly suggestive of malignancy", nothing else. I am having a PET scan tomorrow.

I saw my surgeon today and he suggested that I wait and see what the PET shows.  Obviously, he will remove it if it is clearly suspicious on the PET scan. However, he suggested that if my PET is clean that I just "keep an eye on it".  He said he would be willing to do a needle biopsy if I really want it, but he's pretty sure it's just scar tissue from the multiple surgeries.

What do you guys think? Is he right about it likely being scar tissue?  Would you take that chance?  Should I demand to have it removed if my PET is clear?  Maybe I should wait to post until I know for sure what the PET shows, but I'm really anxious about this and I am worried that my surgeon is not taking this as seriously as he maybe should (he's not a specialist).  Then again, it's easy to get paranoid about these things....

 

Thank you in advance for any advice, and thank you for being here to help... this site is an amazing resource.

 

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dlraysin's picture
Replies 3
Last reply 4/25/2011 - 9:47pm

My brother was diagnosed in 2/11 with a spindle cell melanoma.  He had a lump on his chest that his family doctor said was a cycst for the last 5 years. He finally complained enough that the doctor removed the "cyct" in the office.  The biopsy came back positive for melanoma that was 17mm thick and was attached into the fatty tissue.  Of all things, I am a chemo nurse for an oncologist.  This happens to be one of the cancers that I have no experience with.  I went with my brother to see a surgical oncologist.  He said the the site would need be excised much larger with addittional biopsies and also to have sentinile node mapping done and biopsy the node.  This was expected.  After all of the reading I also expected that the nodes would be positive due to very large size.  I got the impression that the doctor also expected this.  Due to poor insurance coverage, he did not get a pet scan, but did get a ct scan.  Nothing was seen.  The additional surgery found the lymph node negative, there was a small part of the tumor left behind that was removed along with a 5 in circumfrance around the site.  The doctors are al puzzled, biopsies have been triple checked, because the tumor was 17 mm, but are not finding mets or positive lymph nodes (yet). We were told outright that he was at an extremely high risk for recurrance and mets because it is spindle cell and 17mm.  We were previously told by the surgeon that interferon would be standard of care, but would only lower the risk about 1%.  After being released from the surgeon, he was sent to a general oncologist who recommended interferon for a year.  My brother (age 40 with a 12 year old son) doesn't want treatment because he feels that it won't make a difference (was told only reduces risk 1%) and if it is going to return he doesnt want to spend a year being sick when he can spend it living.  As family, we are scared and frustrated.  I understand his feelings and will support his choices, but am also looking for addittional information that may provide better info.  I am trying to get him to get other opinions.  Does anyone have any experience in this (type and stage, size of tumor, kind of treatment, or refusal of treatment).  I would appreciate any and all comments.  I feel that I am a great nurse to my patients, but stink at it when it is family.

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Here's an article about Peg... Interferon.  It does sound much more encouraging.

http://www.aimatmelanoma.org/aim-for-answers/physican-blog/1822.html

 

Mary

Stage 3

Life is too short to be anything but happy. Falling down is a part of life, getting back up is living.

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Lisa13's picture
Replies 1
Last reply 4/25/2011 - 1:39pm
Replies by: Sherron

I was diagnosed with Stage 3b earlier this year. I'm leaving today to Montreal to go through the screening process for adjuvent ipi vesus placebo arm. I must admit, I'm still on the fence with 1 month HD interferon, but my oncologist feels this is the best option at this time.  There is lots of positive things about ipi for Stage 4, so I'm hoping (if I get the drug) that they'll be a benefit in keeping a reoccurence away for awhile.  Has this option been recommended by anyone else's oncologist over interferon??  

I hope that this trial is a great success so that it gives us stage 3 people more options and hope.

 

Keep the faith,

Lisa

Many impossible things have been accomplished for those who refuse to quit

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Newmom's picture
Replies 13
Last reply 4/25/2011 - 1:16pm
Replies by: Janner, Newmom, lhaley, Ranisa, Anonymous

I was diagnosed in 7-2005 with Melanoma on the back (0.25MM - Stage 1A, Clark level 2) three months after I gave birth to my daughter.  My 2nd daughter was born in June the following year.  Last night I noticed that a mole on my 2nd daughter’s butt (she had it since she was a baby) has changed in color and immediately took her to my dermatologist this morning to have it biopsied.  The doctor said that 2 new moles have grown on top of the existing mole so the color is different but thinks it is a good idea to have it biopsied.  In event, I am freaking out and lot of unpleasant memories came back … I googled and it appears that pediatric melanoma is rare and extremely unpredictable … sorry but I just need to vent a little … any thoughts?  The doctor said the result will come back in a week … I don’t know how I am going to survive this week …         

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