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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Anonymous's picture
Replies 1
Last reply 3/6/2014 - 3:21pm
Replies by: Janner

April 2011, I had a Melanoma removed from the Left center side of my back.  Stage 1A.  They did a SNB due to regression that consisted of nodes from both sides, due to the injection going both ways.  They took two nodes for the right side and one from the left side, all came back negative.  The concerning part is as I am approaching my 3 year mark and 37 years old, I had my first mammogram a few weeks ago.  I knew they were going to call back because it was a baseline and others told me that would probably happen and not to worry.  What I did not expect was the mammogram was negative, but I had prominent tissue and enlarged lymph nodes on the left side.  I went yesterday for another mammogram and ultrasound and I am clear of breast cancer.  My concern is my primary site is just around the corner from the “concerned area”.  The enlarged lymph nodes are in the same area the biopsied one came from because I saw the clip.  Could this be a local recurrence?  Radiology would be able to see melanoma on a ultrasound could they?  They said I was all good and I should get a mammogram every year now and not wait for the 40 year mark…..  I concerned that I am not “all good” just yet.  I think a biopsy of the tissue and lymph nodes needs to be done since the area is so close to the original site.  Everyone says that Stage 1A isn’t anything to worry about……..  But I keep reminding those people about the people who started off at Stage 1A and are now at Stage IIIA or above…..  They believed that too!  It doesn’t seem like doctor’s are as aggressive with preventive diagnoses with melanoma other than getting you naked……  I’m not okay with that.  It’s my life and I want to live.  Experience and advice is greatly appreciated because they area I live in doesn’t seem to have mush experience with Melanoma patience and the ones I know about are in advance stages.     

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PUBLISHED MARCH 3, 2014
Biomarker research paves the way to precision cancer medicine. Some biomarkers are predictive, Others are prognostic,. still others are diagnostic.

 

http://www.curemagazine.com/index.cfm/fuseaction/journey.showArticle/id/...

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pigs_sty's picture
Replies 4
Last reply 3/14/2014 - 2:55pm
Replies by: pigs_sty, arthurjedi007, starletwoman2007, Anonymous

Hi all,

My wife has recently been diagnosed with stage IV (small met in brain, few in liver). We have just started on Vemurafinib but to me this is only the first stage. I am looking for advice on further treatments or anything we could add to the Vem.

 

We are based in the UK so I'd love to hear from any other UK sufferers on what treatments you have had and are available in this country. I have been doing some research and it seems Christies in Manchester has some very postive treatments, including ACT.

 

We are seeing a Melanoma specialist in Newcastle on Monday with the hope of trials and other treatments.

 

Any advice / help / information is much appreciated.

 

Thanks.

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Bubbles's picture
Replies 2
Last reply 3/9/2014 - 10:30am
Replies by: Bubbles, Anonymous

Yes, Virginia...despite the nay-sayers....there really ARE STILL some openings for a Nivolumab trial in Tampa.  Was there Friday and heard it from the horse's mouth and had to sign the amended protocol myself!!!!

Here's the deal:  An additional arm has been added to my clinical trial...technically named:  A phase 1 trial of a vaccine combining multiple class 1 peptides and montanide ISA 51 VG with escalating doses of anti-PD1 antibody BMS-936558 (now known as Nivolumab) for patients with resected stages IIIC/IV melanoma, NCI protocol P-8316.

The new arm = Nivolumab and Ipilimumab Administration
"You will receive your first dose of nivolumab with ipi within 28 days after your screening blood draws.  The dosage of nivo will be 1mg/kg with ipi at 3mg/kg for all patients in this group. Both drugs will be given.  Nivo with ipi will be given as an IV infusion as an outpatient... The next doses of nivo with ipi will be given 3, 6, and 9 weeks after the first. If at week 12 you have not had a return of your tumor, you may also receive additional doses of nivo, this time at 3mg/kg every 2 weeks for up to 2 years....."

__________________________________________________________________________________

More info on my blog if interested.  They also seemed to indicate that there were still some slots for the nonresected arm....though I am not positive.  But...don't take my word for it!!!  If you are interested.... CALL!!!  Yours, Celeste

H. Lee Moffitt Cancer Center & Research Institute
12902 Magnolia Drive
Tampa, FL 33612
Phone: 1-888-MOFFITT (1-888-663-3488)
Moffitt Cancer Center Switchboard:
813-745-4673 or 800-456-3434
Moffitt Cancer Center at International Plaza:
813-745-1600

Call
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Add to Skype
You'll need Skype CreditFree via Skype

chaoticallypreciselifeloveandmelanoma.blogspot.com

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nancyg's picture
Replies 4
Last reply 3/9/2014 - 8:09pm

Can Melanoma that spread to the skull spread to the brain?   It has not happened yet...thank God... Had a brain MRI... Last Friday... Results negative (Soo happy).. Dr. said chances are slim of it spreading to brain???Hoping that is true,but not believing it.

On a side note, dr described my husband's response to ipi as "mixed".... He had considerable shrinkage in his chest and tumor on lung.... But PET and Bone scan show three new tumors.... So we are thrilled about the shrinkage, but again worried.... They are trying to get the insurance to approve another round of ipi...the battle of this beast continues..

Any input you have would be appreciated!

Thanks and God Bless you all

Nancy 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/23/2014 - 3:38pm
Replies by: sweetaugust, Bubbles

Hi

Can anyone using anti pd1 tell me how they are getting on? Is the drug as good the reports say

Thanks

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Pink's picture
Replies 8
Last reply 3/13/2014 - 9:12am
Replies by: Tina D, Marianne quinn, NYKaren, Anonymous, kylez, mau

These stomach cramps are killing me, feels like labor pains. Any helpful hints out there to help get rid of them

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Janet Lee's picture
Replies 7
Last reply 3/10/2014 - 9:12pm

Hi All. As Don was finishing up his 16 radiation treatments to his pelvic/groin area, he developed new pain and they found another tumor, so he had an additional 10 treatments to this new area. The goal of our awesome radiation oncologist was to get his pain diminished and get us to Florida for a break from this horrific, cold, snowy, icy winter.

We got to Florida and the weather has been gorgeous. Don is feeling ok. He developed a blood clot in his leg, but that was taken care of by medication (after 12 grueling hours in the ER and admission to a strange hospital!). 

Don is apparently having a "partial response" to Yervoy/Ipi (areas above the waist and in the brain have been stable since the end of August!). But below the waist, not so good.

Our next step will be to find a PD-1 or Anti-PD1 trial that seems most appropriate for him.

My question: what exactly is involved in taking part in a trial? I know there can be a lot of paperwork and tests and scans, etc. to qualify. But I'm wondering if the trial necessarily has to be local. Do all infusions have to be at the geographical location of the trial, or can they be given at another site?

Thanks for your help!

Janet

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mary in Rhode Island's picture
Replies 2
Last reply 3/10/2014 - 5:16am
Replies by: JerryfromFauq, Anonymous

I am not sure this has been posted before.  

http://www.dana-farber.org/Newsroom/News-Releases/Immune-system-based-th...

 

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geminilion's picture
Replies 2
Last reply 3/10/2014 - 11:34am

So I'm starting my 10 days of whole brain radiation tomorrow. My neuroncologist said I would need chemo afterward, any idea what they might use?

She also told me I am BRAF positive so that's good.

 

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Jewel's picture
Replies 2
Last reply 3/10/2014 - 9:51am
Replies by: Kelly Smith, Jewel

The great news is my husband remains NED 2 1/2 yrs from a stage 3C diagnoses, bad news

is he has a 5cm cyst in left kidney. It is giving him no symptoms. Not sure yet what the

next step will be....still we are over the moon.

Jewel

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Michellemjg's picture
Replies 4
Last reply 3/12/2014 - 4:38pm

Hi there,

My husband has been experiencing severe rigors.  The uncontrollable shaking, sweating and nausea have him wiped out.  I have had a very difficult time finding out about how to best handle it.  I located a random tip on the internet recommending to warm up his extremities, which we do and find that it helps a little.   We have a heating pad at his feet and a warming blanket underneath him. The rigors can last for hours and are intense enough where he cannot hold a glass of water or get to a bathroom.

Is there a blog about patient comfort?  It seems to me with the kaleidoscope of side effects for the various drugs that patients are on it would be somewhere on this blog, but I cannot find anything so far.  I assume it is my own ineptitude as I have not used a bulletin board before.

His fever has been high for 5 days now, high as 103 and lowest at 101.  There is a predictable time table with the onset.  Does anyone have any ideas of the timing with the Benadryl and Tylenol with respect to these symptoms?  Are there any other medications anyone has heard of or has tried?  Has anyone gone off the taflinlar for a short time?  Is there any data to support the cost/benefit analysis in doing that?

So far his doctor has him taking Benadryl and Tylenol.  I try to keep lots of liquids in him smoothies and Gatorade.  Food is difficult because of the nausea.

 

Would appreciate any advise.

Thank you,

Michelle

 

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Anyone done or heard of ablation (either radiofrequency ablation or cryablation) of a cancer tumor especially a bone tumor?
Anyone know how affective it is?

Looks like there are only a few places in the world to have it done. In the USA looks like for bone tumors only Rita Medical Systems (now AngioDynamics) in MountainView California.

Seems like they have good success for up to 7cm tumors although the larger the tumor the less successful they are.

Seems like they are using this for malignent lesions such as metastaic bone disease. (ie: where all my melanoma currently is).

Basically my current idea to keep from being paralyzed is radiation that starts tomorrow but if that doesn't get rid of the T10 vertebrae tumor I'm looking at other options for that specific tumor. Of course I will also continue the Tafinlar/Mekinist combo as I also try to get into a PD1 trial all assuming the radiation gets my spinal cord safe enough to travel. Yeah slightly complicated changing plan but I gotta try to do what I gotta do.

 

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http://www.pnas.org/content/109/50/20373.full.pdf

Endogenously produced nitric oxide mitigates sensitivity of melanoma cells to cisplatin

Melanoma patients experience inferior survival after biochemo-therapy when their tumors contain numerous cells expressing the inducible isoform of NO synthase (iNOS) and elevated levels of nitrotyrosine, a product derived from NO. Although several lines of evidence suggest that NO promotes tumor growth and increases resistance to chemotherapy, it is unclear how it shapes these outcomes. Here we demonstrate that modulation of NOc-mediated S-nitrosation of cellular proteins is strongly associated with the pattern of response to the anticancer agent cisplatin in human melanoma cells in vitro.

 
 

 

I'm me, not a statistic. Praying to not be one for years yet.

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