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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Candi13's picture
Replies 11
Last reply 7/18/2012 - 5:39pm

Hi Everyone,

Here is an update on taking the  Merck Pd1 drug since December 2011.

Starting this trial at Stage 4, with tumors on leg, chest & lungs, my "first" set of scans showed NED. My doctor could not find cancer anywhere in my body. Such a miracle for only taking this drug for 12 weeks.

Just got the results of the "second" set of scans, and I continue to be NED.

As I side note, my side effects are occasional joint pain. Also, my thyroid lost some of its function so I now takes meds to supplement my thyroid. The study nurse told me that 8 other patients are also having thyroid issues. Apparently, my side effects  were also reported as side effects by BMS PD1 drug trial results at ASCO .

The study nurse also told me that many patients are showing a response. She commented that the response rate for thisMerck PD1 drug is very impressive.

I hope that this information on my experience with Merck PD1 gives you hope!

Wishing everyone a NED status.

Candi

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Replies by: Richard_K, Gene_S

Hi Everyone!!!

Been a long time since I've been on here. I will be NED for 5 yrs. next month!!!! Will also CELEBRATE my 45th birthday this week!!!! And will be a Grandma in December (I am sooo excited). Hope everyone is hanging in there and just always remember to KEEP YOUR SPIRITS UP!!!!

My question is.... Doc just told me my Cholesterol was HORRIBLE!! 297 total, good=77 and bad=220. Wants me to go on lipitor but I sure don't want it to lower my immune system. Any advice on this? I did some research and got conflicting info. on a few different sites.

 

Thanks!!!

SandyW

stage IIIB, NED 5 yrs!!!

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Watertree0513's picture
Replies 1
Last reply 7/17/2012 - 8:24pm
Replies by: Anonymous

Does anyone have any experience with Halo Moles and a growing halo?

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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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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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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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Sherron's picture
Replies 7
Last reply 7/17/2012 - 8:55am

Anyone hear from him?  So many people I dont know anymore.

 

Take Care,

 

Sherron, wife to Jim FOREVER (19 MONTHS OUT NOW)  Still miss him so much.  Each day is a struggle.  Wishing you all well.

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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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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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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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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 8
Last reply 7/16/2012 - 11:50am
Replies by: Bob B., Janner, Anonymous, washoegal

The bright, young pathologist who did my lab work following last week's superficially spreading melanoma encision (SSM) shared some candid remarks with me.   He explained why "completely excised" does not necessarily mean, well, completely.    Why his clinical clients' legal exposure and the commercial necessity to keep them happy encourages absolutist pathology results rather than insights.   Why a completely excised tumor may well need to be re-excised (as in my case).   And why histological reality can be more "grey" than "black & white".   Interesting.   

I put my foot in my mouth with my first post "Overtreatment?"  The fact that I have the luxury until now of only a second primary, both Stage 1, contributed to  hubristic insensitivity.   I will try not to make the same mistake again. 

But if someone is interested in a superficial take on the reality check the pathologist gave me regarding my particular case, let me know.  I found it fascinating.  Others will not find it either interesting or particularly PC. 

The Only Good Legend is a Dead Legend.

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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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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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deesbabygirl's picture
Replies 12
Last reply 7/15/2012 - 9:30am

My daughter is 41 just had bisopy done dr called said stage 3 melanoma waiting to see derm and onocologist as a mother I am lost and heart broken but without much knowledge of Melanoma I don't know what to expect or what to research I need advise form someone as to how to deal with this emotional roller coaster!  at first she did not want to tell me then she did we cried but now a few days later I feel she is shutting me out of her life because she is so independent and dosen't want me to worry is this normal? I have told her I will go to the appointments with her but want to go armed with questions what do I need to ask?  thanks to anyone who can enlighten me on this.

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