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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CherylL's picture
Replies 8
Last reply 7/18/2012 - 6:38pm

After our first cycle of IL-2 at UVA with the amazing Dr. Grosh  in May, we got the GREAT news that my husband's lung tumors are SHRINKING!

For those seeking some positive glimpses of treament options, we're here to share any details of our experience you might wish. :) 

Yes, the treatment is rough, but for us---WORKING

We'll return in September for cycle two...which will be far easier to embark upon knowing the efficacy.

Our thanks and love and health wishes for those sharing the fight. 

Cheryl Lage
Wife of Scott, Stage IV and currently mashing melanoma for GOOD.
 

 

 
 

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RobinS's picture
Replies 7
Last reply 7/17/2012 - 3:10pm

My mother is a very healthy 79 year old who was diagnosed with stage 3c Melanoma with 9 lymph nodes with tumors and extracapsular extension where cells had left the lymph node capsule.  She is going to start radiation and the recommended follow-up treatment is a 1-year schedule of interferon. At 79, my mother doesn't want to do the interferon given its limited success (10% have a delay in recurrence) and potential for a year of flu-like symptoms.  Does anyone have information about the treatment plan and side effects of vaccines that have been in clinical trials?  I appreciate any insight s you can share.  Thank you!

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LynnLuc's picture
Replies 2
Last reply 7/17/2012 - 9:46am

Latest message from his family:
"Steve Hock has officially left the building. No more pain, no more suffering, just peace. At 3:15pm In true Steve Hock fashion he made a grand exit, as he took his last earthly breaths to the sound of his favorite band Four Year Strong that began playing all by itself.................it is still playing. On behalf of Steve Hock & his entire family thank you........."

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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fcrawford's picture
Replies 4
Last reply 7/18/2012 - 6:32pm

Good Afternoon all, 

I joined this website hoping to find help, My mother was diagonsed with anal melanoma 2 1/2 yeas ago, she has been through chemotherapy and radiation twice now and currently on her third time of radiation and soon to start chemotherapy again. About 3 weeks ago she was told, she is now terminal after finding the cancer had spread even more to include her brain. I worry about her a lot, especially since I am so far away, I am in the Marine Corps. I write today trying to find places that might offer her financial aid. While she is battling to keep her life, all she can think about is the medical bills, morgages, and other bills piling up. I hate to see her worry about these things when there might not be much time left. since her being diagonsed her health insurance has increased by $1,100 a month. If anyone knows of foundations or charities that will help her, please let me know. thank you. 

 

Cpl. Crawford

USMC

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Good Afternoon all, 

I joined this website hoping to find help, My mother was diagonsed with anal melanoma 2 1/2 yeas ago, she has been through chemotherapy and radiation twice now and currently on her third time of radiation and soon to start chemotherapy again. About 3 weeks ago she was told, she is now terminal after finding the cancer had spread even more to include her brain. I worry about her a lot, especially since I am so far away, I am in the Marine Corps. I write today trying to find places that might offer her financial aid. While she is battling to keep her life, all she can think about is the medical bills, morgages, and other bills piling up. I hate to see her worry about these things when there might not be much time left. since her being diagonsed her health insurance has increased by $1,100 a month. If anyone knows of foundations or charities that will help her, please let me know. thank you. 

 

Cpl. Crawford

USMC

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Today I notified the FDA and the med distributor (for the medication I had for multiple sclerosis) of my melanoma diagnoses, believing that it could be related to the four years of daily injections I took for multiple sclerosis - injections designed to attract and distract my immune system from attacking my central nervous system.  They have already linked one other of the disease modifying drugs (DMDs) for suppressing the immune system and allowing the body to be more susceptible to melanoma. It is important to let the FDA know of unreported side effects.

I was also able to hasten my next surgery date to this week instead of the end of next week. It's a new, separate site of melanoma, and not something I'm comfortable delaying. There's also a third site, on my leg, which came back as squamous. That will be removed as well.

The  other "seven sites of suspicion", which the dermatologist 'froze' with cryosurgery last week, are not healing. I'll ask the surgeon about that when I see him in the next few days. The heat and humidity haven't helped with the healing, I"m sure.

I'm praying that this new round, so soon after the first round of surgery, will be less invasive and smaller in size. If you've read my earlier post, you know that the first atypical malignant melanoma site on my back resulted in three surgeries and only after the fourth biopsy were the margins clear, which left me with a sizeable wound, closed with more than 50 stitiches in the shape of a Z. It was pretty alarming when I finally saw it in the mirror at home.

I am feeling lethargic and nauseated, but am blaming that on the heat. Staying indoors, near the air conditioner.  Feeling lucky that I can do that.

I am not perfect, but I am enough.

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Harry in Fair Oaks's picture
Replies 9
Last reply 7/17/2012 - 1:21pm

I'm now more than a year into this trial, and I'm doing very well.  No new tumors observed, all the soft tissue tumors are gone, and the couple of bone mets that are still seen on the CT are not showing any activity on the PET.  The drugs have proven very easy to tolerate.  While I had lots of joint pains and fevers a month or two into the trial, the only issues I now have are mild fatigue and the occasional (every couple of months) high fever.

The initial results from the trial (as reported at ASCO) indicate that this combo of BRAF and MEK inhibitors may be more effective than a single agent (e.g. Zelboraf) and is easier to tolerate, with fewer side effects.  My experience seems to bear this out.  I hope that this treatment indeed proves effective, and that it will benefit many others.  It is becoming somewhat of a hassle to keep up with all the scans and tests and appointments, but I keep reminding myself that besides perhaps saving my own life, I'm also doing my little bit to advance knowledge.

Best wishes,

Harry

Too ugly to die!

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Linny's picture
Replies 3
Last reply 7/16/2012 - 4:22pm
Replies by: chalknpens, susanr, Anonymous

An interesting read:

“It turns out there’s a class of T cells (TH9) that make lots of interleukin-9,” Kupper said.  “With this clue we asked whether this could have something to do with the ability of mice to reject cancer.  We went on to do experiments to see if these TH cells that make interleukin-9 cells were good at rejecting cancer, and these are extremely effective at rejecting cancer cells – especially melanoma.”

Stage III, Unknown Primary; 1 positive node in left axilla

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deesbabygirl's picture
Replies 1
Last reply 7/16/2012 - 10:46am
Replies by: Fen

Thank you all for your info it was very helpful when we saw the surgeon last week!  I knew what he was talking about and it was much easier to understand...in my first post I did not know anything and daughter was given a "stage" instead of a Clark level so thank you for helping me to know the questions to ask   it was a Clark level 2 and the Melanoma .7mm she will be having surgery within the next week and at that time will also have the sential node biospy we are hoping that it has not spread and that they will be able to get it now  I will update once we get through the next two procedures thanks to all! and thank you for your prayers

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justlittleoleme's picture
Replies 19
Last reply 7/18/2012 - 10:12pm

At 4:15 am today, I lost the love of my life. He fought a good fight until the bitter end. Someday I will write an update post to recap our past few weeks with this dreadful disease.
He was a father to three wonderful children. Daniel,19 Emily, 18 and Benjamin who is 9.
He loved his family above all else. He was the most selfless man I have ever met and was lucky enough to fall in love with.
Please pray for us this week as we say goodbye to his earthly body. We rejoice knowing he is with our Lord!
Thanks barb

We don't know how strong we are until being strong is the only choice we have.

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Watertree0513's picture
Replies 3
Last reply 7/14/2012 - 7:17pm
Replies by: Anonymous, Watertree0513, awillett1991

I had a spitz neiva removed last year and now I have a long skinny mole growing vertically across the scar and 4 small moles around the bottom. Is this normal? I have always had moles but they really quadrupled when I was pregnant this last year. I had my fiancé count the number of moles on my body and we quit counting at 548. My grandfather died of melanoma in 2010 and my grandma had facial reconstruction surgery from it in 2009. Am I being paranoid Or is there something weird going on?

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/16/2012 - 12:12pm
Replies by: Harry in Fair Oaks, Anonymous, washoegal

Hello,

For a few days, I have a pain in my knee, which started suddenly at night and doesn't go away. It is not constant but "flashing": hurts for 1-2 sec, then go away for 3-4 sec or more, then comes back etc. I feel it most when standing, sitting, lying down but it is better when walking. I am Stage 1B, 8 years post-diagnosis. I have a herniated disk but never had before such symptoms in the knee. Did someone experienced something similar? Do bone metastases have the same pain pattern? I am scared and will appreciate any help. Thanks.

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/15/2012 - 11:01pm
Replies by: Anonymous, Rdmstm, kelsta78, Harry in Fair Oaks

So back in February I had a wide incision done on a 1mm, Clarks level IV melanoma mole on my back.  Had PET/CT scan and ulstrasounds done all come back clear.  Also had another quick check over at skin cancer clinic where we went over other moles and did photographs.  The doctor mentioned to me that it is not always moles to keep a look out for but more like red marks on the skin that are new.  So I now have this small red spot on my face that is concerning me.  It is not going away.  A beautician happened to mention it last time I was getting my eybrows waxed that she sees spots like that all the time.  Like age spots or something...  But now I have a swollen gland or soemething right near my ear just below the spot.  It's quite sore and now I am worried that it is my body telling me something isn't right.  And of course this had to happen on a Friday afternoon and can't ring the doctor until Monday!  Kind of feel like I could be being paranoid and just thought I would post this and get other people thoughts since I can't contact the doctor for a couple of days..

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aldakota22's picture
Replies 14
Last reply 11/25/2012 - 6:29pm
Replies by: Anonymous, mclaus23, Jeff's Mom, kylez, aldakota22, Karin L, lhaley

 Does anyone have any info on 2 fighters i have not seen any recent posts.They are Lisa13 and Jeff son of Bridette.Know they have a very tough fight and was wondering how they are doing.Been saying an extra prayer for both. Beat the Beast.     Al

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akls's picture
Replies 4
Last reply 7/14/2012 - 1:16am
Replies by: washoegal, ylkay, gabsound, Linny

Hi everyone.

 

I just have a quick question for those who have had axillary node dissection.  I had my surgery more than 3 years ago and I've had some pain mostly in my arm pit area some nerve pain too.  I know this is common.  I have no signs of lymphadema.  About two months ago I started having should pain with lifting my arm.  Hurst when I wash my hair, when I'm sleeping on that side, pretty much any movement above my head.  I don't think I injured it recently.  If I did I don't remember it.  Just wondering if anyone else has experienced this pain.  Saw my onc. in May and chest x-ray and blood work was all good.  Thanks for any advice.

 

Amy S. in Michigan

Stage IIIA 6  years NED Completed 1 year interferon 2009.  God is Good.

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