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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chrisS's picture
Replies 8
Last reply 2/25/2011 - 8:45pm
Replies by: Anonymous, chrisS, Carmon in NM, Carole K, jag, KatyWI

It's been a tough fight so far. Melissa was diagnosed with stage 4, tumor in chest, liver, and back, 6 months ago. It seems like yesterday we were turned down by NIH and we went in for our first IL2 in Sept along side himynameiskevin. It was both of their first weeks. It seemed to be working(20% shrinkage) after 6 admittance. We began a 2.5 month break 3 weeks ago but she had headaches this past weekend. Took her in yesterday and found out 4 mets and one big one in the front that needs to come out ASAP. My young(32) beautiful, full of life wife is so strong. Prob in a little bit of denial.

Anyone gone through the surgery and know what the risks are?
Will she change? Should I take a leave of absence from work? So many questions.

Happy the tumors in her body have shrank. It is a blessing we went in because we are going to Maui on fri for 3 days, and had some scuba planed. Apparently the water pressure my have caused brain bleeding on the tumors. Man that would have been real bad.

One other question, has anyone traveled in an airplane with brain mets? Is the pressure a problem?
She is now on steroids that have helped her headache and I assume brought down the initial swelling.

Thanks everyone. This board has always been so informative and the LOVE on here is incredible!
Keep up the good work!

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Lori C's picture
Replies 9
Last reply 2/25/2011 - 7:26pm

Hi to all.   I have published another story about Will's melanoma fight, if anyone would like to read it

http://www.dailykos.com/story/2011/02/23/948581/-And-thats-all-I-know

I am following this board and keeping you all in my thoughts & prayers.

 

Lori, caregiver and soul mate to Will

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Wetterhorn's picture
Replies 6
Last reply 2/25/2011 - 4:39pm

Just thought I would post that my surgery was a success last Thursday at Sloan Kettering. Had a partial resection of my small bowel, only 1 lesion was found. The recovery has been pretty remarkable and while the surgery was not done laproscopically, I have made significant strides each day. Spent 3 nights in the hospital there and am now back home in full recovery mode. I suppose I can say NED again, but with this being my 5th surgery, I'm a bit hesitant to label myself that. Anyway, needless to say, its a huge relief to get it over with and to be back on the mend again.

Thanks to all the docs and nurses at Sloan. 

Wetterhorn

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This abstract (published last month) has confirmed early indications of a survival benefit in a randomized phase 3 trial.

http://www.liebertonline.com/doi/abs/10.1089/cbr.2010.0865

 

Frank

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

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Thank s to all who have replied to my interferon question and concerns. After hearing your stories and reasonings I feel quite a bit more relaxed and sure of my decision. By the way I will be starting the week of the 7th of March. The wait and see aproach does not get it for me as I have always been a hands on , gotta go do something type person most of my life, and just setting around and wondering about it would surerly have driven me crazy and made me wonder and second guess myself. So untill I begin, Thanks again for everyones support and words of wisdom here. 

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lindas58's picture
Replies 3
Last reply 2/24/2011 - 9:35pm

My husband was diagnosed in Dec 2010 with a melanoma on his back. Has since been removed along with the sentinal nodes in his armpits. (they were clear).  I am very confused about his diagnosis & was hoping maybe you could answer some questions  for me. Initial pathology report was very brief, 0.42 Breslow depth,  clarks level lll, 1.6 x 1.1 cm with ulceration. We can't seem to get an answer on what stage this is or if we should be concerrned at all. The drs feel there should be no re-occurance. I am beside myself with worry it will show up elsewhere. The oncologist did tell him a few things to watch for but I feel this isn't enough. Am I just a worry wort?

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Bombeni's picture
Replies 7
Last reply 2/24/2011 - 10:49am
Replies by: Bombeni, Janner, 2atlascedars, Anonymous, KatyWI

Hi everyone.  I had a sore develop on my neck around Thanksgiving.  I have never had any moles, and for a couple of weeks I figured it was a bug bite.  It is about half the size of eraser, blackish but when I wash sometimes the surface sloughs off and it is red and bleeding.  Oh, early last Fall I lost 25 pounds in a matter of a couple of weeks, having weighed the same thing for 20 years. 

I am a computer dodo.  I have a camera phone and took a picture of this thing.  I wish I knew how to send the picture for others to look at.  I did see a derm. and he is going to excise a very large area on Feb. 7,  I fully expected for him to do a simple biopsy the day I was in his office TWO WEEKS AGO, ERRRR.   But he only works part time now and first appt was Feb. 7 to excise this.  He drew the size and shape of a  human eye which he is planning to take out.  Now, doesn't that seem like a somewhat radical thing, taking that much area and of course will have a scar (he said 6 stitches) before he knows for sure if it is cancer?  I know he is one of the most respected derms in Tulsa, but does anyone feel I should go somewhere else to have a simple punch or shave (I've been studying) biopsy first?  Thank you for any replies.

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ValinMtl's picture
Replies 3
Last reply 2/24/2011 - 9:46am
Replies by: ValinMtl, Vermont_Donna

Hi Donna, I read your reply below and was wondering about the"solaris garment".."its thick and padded kind of like an oven mitt, that you slip your foot and leg into..it goes toes to groin".  Could you tell me where you were able to purchase it? 

I fly up from Florida for CT scan on Tuesday...stressful time.  Left groin is still swollen and the new sub-qs are still there although many of my other lesions have diminished....I'm praying hard.

Val

Live Laugh Love Nothing is worth more than this day!

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mzeigler's picture
Replies 1
Last reply 2/24/2011 - 9:19am
Replies by: nickmac56

My wife completed 4 rounds of ipi and had our first scans.  No new mets!  The largest met did not change and the smaller ones looked

slightly larger but not much change.  Now we wait 4 weeks and and repeat scans.  She seems fatigued, and has stiffness and aches

in her joints and muscles.  We can put up with it if it stops the melanoma.  Mean while, doctor is testing for the braf mutation if the ipi does

not work.   He has access to braf/mek drugs and one called E7080.  The one he uses will depend on the test.

It's been a long haul.

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4hope's picture
Replies 4
Last reply 2/24/2011 - 7:41am

Hi - I am a new poster but have been reading your postings recently and find them helpful and encouraging.. I have filed my profile and would greatly appreciate reccomendations or experiences that might help me to make a decision going forward on the treatment I should use.

I am stage IV with my initial melanoma removed Feb. 2010 with a 4mm tumor on my left side. . I went through 4 weeks of Interferon in  May 2010. Since then I have had a reoccurance of three melanoma nodules 1 on left side and 2 on left breast. They were surgically removed in Sept . Now I have again four more reoccuring nodules again on left side and on left breast.

I am lucky enough to live close to New York City and Phila. and have been speaking to 2 Doctors, one with the phase III Oncovex Trial and the other with the possibility of joining the phase I study of Ipi/PLX4032.

Since I am in the early IV stages of Melanoma I am uncertain which Trial if any is the right course of treatment for me. My CT scan and PT/CT show nothing yet - not even the small visable nodules. Any experience or advice would be greatly appreciated.

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kbc123's picture
Replies 4
Last reply 2/24/2011 - 3:35am

I think now I have more information to go on.  Now I am totally confused as to treatment.  WAIT and WATCH?  Who invented those words anyway?

I had my lymphoscintigraphy, (twice actually-at preadmission for mapping and then again on surgery day) I had SNB and Wide Resection last week.  My results are one lymph node is clear and the other shows....one node with single minute aggregate of Mart-1 immunoreactive cells in the subscapular location.. 

Now hearing they are both completely clear would have been my request however my body says different I guess.  My doctor says that this is not that bad.  I am a little concerned about where to go from here.  He basically says all I do right now is go for my CT scans (chest abdomen and pelvis) for a baseline and see me in three months.  He also says to watch for any changes in my body. 

I want to hear from anyone out there with any help with the following.... 

A) Does anyone have info on that lymph node biopsy info above?

B)  Did anyone out there start off where I am starting off right now? 

C) Second opinons are always important.  Believe me,I am a believer in that.  Although I trust the doctor I go to however I would like another eye to look at this..where to go on the East coast?  I was thinking Univ or Penn or Sloan or whereever someone tells me to go at this point. 

D)  I need a dermatologist for full body check.  Not sure about going to where I originally went for mole removal.  I feel like there has to be a Melanoma specialist specifically for that..I may be asking for a lot but I feel like a doctor that treats acne and Botox injections may not be for me?  I could be totally wrong but I searched specifically for that and nothing really comes up.

So much for wanting to be 1A or 1B or even 2.  I guess I am 3 now?  Ugh.  God help me with this..... 

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Anonymous's picture
Replies 2
Last reply 2/23/2011 - 5:59pm
Replies by: Phil S, Tracy Chicago

If you are able to get through the year of interferon, does it keep you from getting common illnesses as well as keep the melanoma at bay?

By common illnesses I am referring to colds, flu, etc.

I am aware that it doesnt keep melanoma away forever, but since it does pump up the immune system, it would make sense that common illnesses would be rare as well, doesn't it?

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acyr's picture
Replies 6
Last reply 2/22/2011 - 11:10pm

Hi everyone,
Below is an update provided by Sharyn's husband Jim tonight regarding her surgery. As all of us who have come to know Sharyn, she has come out of this in true Sharyn style - we send her our best wishes for a speedy recovery and hope she can get back on her trial soon.

Annette

Hi everyone
Sharyns surgery went well this morning and she is resting in Special Care, in fact when I dropped in after work she was eating her supper, she seems a little brighter then she has for a while and is in very good spirits.
Well that's it for now, she should move into her room by tomorrow night or Wednesday then hopefully home by Friday.
Regards
Jim

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I am starting the 2nd week of iv interferon.  I am stage 3a.  I was told I only need to do 30 days iv, but a friend that was also diaganosed stage 3a was told he must do the entire year of treatment.  What are your thoughts? 

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baseballmom's picture
Replies 6
Last reply 2/22/2011 - 10:04pm

I have been reading the posts on this site for quite some time now and have gotten much hope and inspiration from them.  I never felt like I needed to post, but now I do.  I was diagnosed with a choroidal melanoma (in the eye) in 1/09.  I opted for enulceation (removal of the eye) in 2/09 and was fitted for a prosthetic in 4/09.  On my first round of rescans in June of 09 a small spot was found on my right temporal lobe.  My neurosurgeon was able to remove the spot by doing a craniotomy and get 2mm clean margins.  In August of 09 I was given the choice of gamma knife for added precaution.  I chose to do it and all was going along well.  I was getting tested every 2 months, mainly MRI's of my head and PET scans.  In March of 10, a very small spot was found on my left temporal lobe which was too small for surgery and we were able to hit it with gamma knife and that took care of it.  My head MRI's have been clean since.  I just had a PET scan because it had been about 10  months since my whole body had been checked.  Well, they found increased uptake in the liver.  Had a CT scan and it confirmed what the PET found.  The doc was ready to lay out a plan for treatment but thought I looked too good for what the scan showed, so he did a liver biopsy and of course they confirmed melanoma. 

I am freaking out.  It has taken 4 weeks up to now for all the tests and results.  I see Dr. Donald Lawrence at Mass General next week and will start clinical trials, but of what, I'm not sure.  I haven't really been this scared since my initial diagnosis.  I even mention the word liver to people and just the look on their faces makes me feel like I have a death sentence.  I have 3 kids, 17,14 and 8 and am just not ready or willing to leave them yet.  I know this will be the hardest part of the fight, but I am ready for it.  At this point, I just want things to get started. 

Does anyone have any advice to offer, I have told the docs I will do anything and everything, any suggestions??

Karen

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