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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Napa K's picture
Replies 2
Last reply 4/28/2011 - 1:11am
Replies by: K in LA, stillhopeful

Does anyone have any experience or insight on radio frequency ablation in melanoma?  doctors you know of doing it? trials?  Trying to deal with a likely unresectable mass high in my right axila adjacent to the transition of the subclavian and axilary veins. No other known disease at this time and looking for something to do now, even if it is not a long-term fix.  Thanks for any info you may have in advance.

Hope is the most powerful drug

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chrisS's picture
Replies 28
Last reply 4/27/2011 - 9:34pm

On April 20 my beautiful 32 year old wife Melissa passed. We were married for 5 years and were best friends for 12. The world has lost someone who would never harm anyone and would go out of her way for everyone. We complimented each other perfectly. After may adventures living in tents, vans, moving to Maui, traveling cross country twice, buying our first condo, our loving dogs, I could go on for ever.

When I took her in to the ER last week after puking all night and not being able to communicate in the morning we found out she went from 6 brain mets to the most they have ever seen. Over 100 in 2 weeks. After pumping her full of more steroids for 2 days she woke up for 4 additional days. Even though she was mostly blind we all (fam and friends) got to spend some quality time with her. I slept holding her hand or in her hospital bed every night until she took her last breath. I thank God for those last days. We found out how she wanted to be celebrated, to donate her eyes and that she wanted people to honor her by planting a pine tree.

I am in so much pain.

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kim2712's picture
Replies 18
Last reply 4/27/2011 - 9:14pm

My son Erik was dx stage 3c in August of 2004 while in basic training at Fort Sill. He had a full neck dissection and did one year of interferon. He was going to University of Michigan. Loved the doc there and still do. On March 7th his right lung collapsed 100%. Full of fluid they put in a chest tube, after a week and several attempts to clamp the tube his lung failed to respond. On March 14th they did vats surgery and found hundreds of tumors in his lung, pleura, chest cavity and chest wall. They got him stable enough to go home (March 21st) and seek the care of a Melanoma specialist. We saw someone at University hospital in Cleveland, The Cleveland Clinic and his old doc at U of M. My son decided to go with his doc at U of M, stated "he cured me once he will do it again". The day after that appt. on March 31st  Erik started coughing up blood and was very short of breath, I was with him and called 911 to take him to the local hospital here in Toledo. After they put a tube in his chest, did scans, etc..The cancer had already spread into the diaphragm, ribs, muscle along the spine and one spot on the spine L1. Once they got him stabilized they took him by ambulance to the Cleveland Clinic. He spent 18 days there, once stable enough they started a treatment. 3 days 6 mcg interferon followed by 2 days of cisplatin, venblastine and dicarbozine. While there, after the treatment the horrible swelling started, first his abdomen, then all the way to his feet within a day. His poor testicles are the size of a cantaloupe. They did numerous scans, cancer spread again into liver and surrounding areas. They found that the inferior vena cava was compressed and thought that might be the reason for the swelling. They decided to do a procedure to put a metal stint in the artery, the compression was at the very top, widest point of the artery, so this was going to be tricky due to the risk of the stint going into the heart. After doing the fluoroscopy, they found there was still some adequate blood flow from that artery, a large tumor is the cause of the compression, because there was still blood flowing they didn't risk the stint. They decided due to yet more scans that likely the swelling is lymphatic and therefore nothing they can do other than wait and see if the chemo will do it's job. They allowed him to come home on April 21st. He has been pouring in the protein shakes in hope of reducing the swelling, no luck yet. He is also back to coughing up bloody phlegm.

I consulted with his onc at U of M because I trust him totally and can't get the answers I need from the cleveland docs. He said they are making a valiant attempt at saving him, and that's all that can really be done for him in his current condition. I asked him if he has ever seen anyone survive that is as advanced as Erik, and he said no. He thinks a couple months at most is what I have with my son. I know there are miracles out there and they happen every day. But I am so scared, how does a mother prepare for this?

Ughhh, I HATE this insidious disease....

Peace and blessings to all and thank you for listening.

Kim

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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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