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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Owl's picture
Replies 3
Last reply 12/22/2012 - 10:00am
Replies by: POW, Anonymous, sharmon

Dear all,

I posted a couple of weeks ago and got really good input from you, thanks again!

My husband only had a partial response on Ipi (mets in lung, testicle and subqs disappeared, mets in neck area, parotis and 3 lymph nodes in abdomen left and progressing). We had a lot of discussions with the doctors since then. In the last weeks we experencied that doctors are only humans, make mistake, don't look at the whole picture etc. Luckily we moved home and have changed treatment center, which is now Kiel, Germany. The doctors there have been very helpful and were willing to discuss any options possible. The result is that they don't trust in a reinduction of Ipi, surgery would have no real benefits as the risks are to high for facial nerves and surgents are sure that tumors will come back. Finally my husband decided to start Zelboraf as it was recommended by the doctors. So he did last Wednesday. They did another CT staging Friday as the other one was 4 weeks old. CT shows only one met in abdomen (same size as 4 weeks ago) but two others (that were mentioned for the first time in CT of November) of at least 10mm had disappeared. Neck and parotis mets are also the same. This sounds very confusing to us because we do not believe that Z lets two mets disappear in between 2 days and all others have not changed. Unfortunately CT wasn't done at the same place as in November, so there was no comparison done. Well, nonetheless we hope the Z works well and we will ask doctors to make the comparison in January in order to understand what is going on.

Most of you know how hard these kind of discussions are and we just hope some calm days next week with our little daughter. She just turned one last Wednesday.

Wish you a peaceful christmas time!

Jenny

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becky15's picture
Replies 2
Last reply 12/22/2012 - 9:01am
Replies by: becky15, Anonymous

I am from the UK and was diagnosed with stage 1a 10 months ago.

I travel a lot to hot places and it is very difficult to find high level (over 50) SPF clothing in the UK, particularly in winter.  I will be in Sydney in mid-January at the start of a trip and wondered if anyone was from there and could advise a shop(s) that would stock such clothing.

I realise I could probably buy SPF clothing from the US or Australia via the internet but I would much prefer to try on before purchasing.

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susanr's picture
Replies 13
Last reply 12/22/2012 - 7:21am

You all may not know me.  I was not one of the "regular " posts.  I was not one of the "known patients or caregivers" on this forum.  I lost my brother Peter on 12/6/2012 to this horrible beast Melanoma.  I did not think I could re-visit this forum but needed to say good bye formally and wish you all well and hope to beat this very aggressive cancer melanoma.  He was only 45.  He had a wife, 4 small children, parents, and siblings.  He fought 3 hard years.  Nothing seemed to work.  We hit one brick wall after another. My brother never once said " why me", he never cried or complained.  Its sad to say that I am in the medical field and still could not save him.  I was a new mom at the time this beast was brewing in him.  He thought he had a splinter on his foot that was not healing.  I did not pursue anything for him thinking its just a splinter.  By the time it clicked in me...it was to late now that I look back.  I feel that I did not fight hard enough for him and hope he forgives me.  I was involved by being a new mom.  Normally I would be the biggest  "Pain" to my family for going to the doctor.  You all probably agree with me that nobody never expects this to happen.  I still feel like this is a nightmare but when I wake up...its not. I can say that my career in the medical field is over... I am tired of non-sense that the medical field brings and watching people suffer and you can't control it.

I feel so bad for any parent that has to bury a child.  It destroys me that my parents had to go through this.  I also feel for the poor parents of those children in Conn. that have to endure this nightmare.  My brother loved children so I know he is teaching them to fish right now....hoping he ain't smoking a cigar in front of them.....LOL !!!

During the last week of my fight for my brother one person on this forum was such a great help....and that was Mr. Charlie himself.  Charlie, I hope you read this and understand how much I appreciate your help.  I have this feeling that you know when somebody on this forum really needs an extra shoulder to lean on.  I kind of knew what the outcome was going to be but did not give for him.  The night before he passed, he told us that he was finished with doctors and hospitals.  I can at least move on knowing that we did all that we could under his wishes.  Charlie.....Thank you.  You are great!!!!!

To all the rest on this forum, Please be there for everyone.  I read some of the posts and there are some of us that really need that support form all of you on this forum battling this cruel, nasty, cancer.  Someone can post a topic and have over a hundred views but not one comment......even if you don't know the topic....just write that you are sending a thought or a prayer and that can help.  There are many of you that I have been following and have cried over some that have passed on.....My brother was not a member on this forum but I was and please support all who have died from this disease and who are still battling this beast.  He is now with all the angels.

Best wishes and keep fighting !!!!!!!!!!!  Lets find a cure !!!!!!!!! 

Susan

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Anonymous's picture
Replies 9
Last reply 12/21/2012 - 7:01pm

Hi all...I have been reading these posts for a couple of months now but this is my first time writing.  I am looking for some advice and thought this might be the best place to get it.  My father is 64 years old and has lived a very healthy life until being diagnosed with Stage IV melanoma.  The satillite tumor started on his back and was removed in July.  His lymph nodes were clear but in August a spot was found on his lung (traveled through the blood) and was removed in September.  His last CT scan a week ago showed NED so he is trying to decide what to do next.  One doctor in NY suggests he get CT scans every three months and when it returns start treatment then (ipilimumab or possibly Anti PD1 trial).  Another doctor in Boston suggests that he enter into a clinical trial now while he is NED, the trial consists on either Ipilimumab or interferon.  We are trying to decide the best path to take and are looking for any help or any suggestions?  He is feeling so good and healthy now that he isn't sure if he wants to feel awful for a year of the trial.  We also keep hearing that neither med in the trial have very good results, so is it worth it?

Thank you for any advice!

   

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awillett1991's picture
Replies 3
Last reply 12/21/2012 - 12:50pm
Replies by: Anonymous, POW, NYKaren

According to my Dr, some of the Ipi+zelboraf trials are shutting down because of liver toxicity issues. The liver just can't handle both drugs at once. This is where I am now. I finished Ipi #4, 2 weeks ago but after round 3 had to restart Zel because my heart met was growing like crazy. Have already had to stop Zel twice because of crippling side effects even though I was doing really well on it before Ipi.

At one point my ALP was almost 700, AST, ALT, and bilirubin were all high, but as of yesterday, ALP is down to 352, bili is normal, and the rest isnt too bad. I'm restarting Zel later in the week - I have to take it, but I'm a little gun shy. We are trying to get me to one week on/ one week off the drug. It's a scary place to be.

Amy

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lou2's picture
Replies 10
Last reply 12/21/2012 - 12:45pm
Replies by: lou2, POW, Anonymous, Janner

Doctor's office called to explain costs involved in surgery tomorrow.  It seemed very high to me - $1000.  Small city in the south, where one might expect not to pay a premium like a big city elsewhere.  Board certified dermatologist but not derm onchologist.

It is a small spot recently diagnosed for the first time.  Details:

Malignant melanoma lentigo maligna type

Breslow thickness 0.15 mm

Clarks level II

Mitotic rate zero

etc.

Note on pathology report that it will be a 20 mm excision.  This is quite a bit bigger than the spot.

 

And a separate question.  Seems like biopsy of melanoma that is restricted to the surface, not deep, might spread these cells into deeper skin layers.  Is this something to worry about?

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NYKaren's picture
Replies 7
Last reply 12/21/2012 - 12:44pm

Hi everyone,
I had my pre-Zel PET this morning (as soon as it was done I took my first dose).
Results were as expected however I have a nodule on my thyroid (I'm on synthroid, FYI) so Dr. Wolchok said an ultrasound & FNB are advised.
I must admit, I'm a little scared.
Have any of you had one? Does it hurt a lot? Can they put me out? Not kidding--after all the painful stuff I've been through, pretty stoically, the thought of a FNB in my throat scares me. I guess if there's Mel there its a good time to be starting Z.
All sharing of experience welcome.
Thanks,
Karen

Don't Stop Believing

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Jydnew's picture
Replies 7
Last reply 12/21/2012 - 8:54am
Replies by: POW, Snickers60, tuneseo, clientcommon, jupeter41, Anonymous

After receiving the DTaP vaccine last June, my husband got very sick - mild head cold, but extreme fatigue (like, can't get out of bed for 20 hours a day) for 12 days, until he got on an antibiotic and flonase and whatever it was got kicked by day 14.  He had his semi-annual oncology appointment in August and bloodwork was fine - first year with no scans.  In late September, the whole family had a very mild cold (we have 2 little girls), and he was completely laid up again with the debilitating fatigue.  This time, he go the antibiotic at day 4 and kicked it by day 7, but is still a little touch and go - still a bit tired, but who can tell if that's normal from having a 7 month old and a 3 year old...

Anyway, his doctor wants him to go to a rheumatologist because she thinks it's an immune problem.  He saw an ENT today and is being tested for mono, but even if it is mono, recurrent mono is an immune issue, so... does this warrent a call to the oncologist?  I don't know what for, but I think immune deficiency, and it scares me.

He's 10.5 years NED, stage iiia.

 

Thanks,

Wendy

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krem's picture
Replies 3
Last reply 12/21/2012 - 1:25am
Replies by: krem, _Paul_, Janner

I had surgery on my outer quad/thigh to remove a melanoma in situ about 6 months ago. I'm finally starting to regain feeling on the surface of my skin surrounding the incision site, but now I have a new problem: more widespread numbness.

Whenever I have something (like a laptop) resting on my lap, it's painful all down my leg. Also if I sleep on my side, either one oddly enough, the same pain occurs. I'd call it numbness because that's what I'd assume the pressure would be creating... but I guess it's more of a pain. It is almost like the feeling that happens right before a pins and needles sensation.

The real question here is this: Will this go away? Is it cause for concern? I know it's not uncommon for nerves to be cut in this type of surgery, but I don't know much about nerve regeneration symptoms. 

Thanks,

Emily

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sjl's picture
Replies 2
Last reply 12/20/2012 - 11:21pm
Replies by: sjl, Anonymous

I realize that not many are on my husband's treatment plan but I thought I'd ask anyway in case someone reads this and can help.  My husband is on carbo/taxol chemo for Stage 3c mucosal and has been doing extremely well.  At his last appointment they could no longer feel any tumors at all and prior scans had shown continual shrinkage.   Until the next scan we have no way of knowing if they are gone or not but we are trying to stay positive.  He was to get a treatment today but his platelets are too low so they are going to try again next week.  Now I'm worried that by delaying the treatment a week that the big M will have a chance to take hold again.  In August a large tumor and several smaller ones popped up on his neck literally overnight and grew much larger everyday until he began treatment two weeks later.  After the first treatment there was a 75% reduction in tumor load and they've been shrinking ever since.  He gets treated every three weeks.  This would have been a scan day but at the last treatment when they could no longer feel anything they decided to wait another 3 weeks for the scan, making it 6 weeks between scans.  He has had 6 treatments and is to get 4 more.  Thoughts, anyone?

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Anonymous's picture
Anonymous
Replies 4
Last reply 12/20/2012 - 11:41am

I have been following you all now since July. My very good friend was diagnosed with Stage IV with no primary in July 2012. By sheer luck, she had a cyst that caused her severe pain and when she had her op. to remove it, they discovered melanoma in her ovary. She was 29 then. I say sheer luck, because otherwise it wouldn't have been dealt with.

We live in the UK and she managed to get onto the GSK trial. She started on the trial in August and has had two scans. On the first scan, the mets in her lung and hip began to shrink. Her second scan showed that her lung mets were immeasurable and her hip tumour hadn't got any smaller but  it had begun to decay from within.

When we got the original diagnosis, we were all devastated, obviously. I was appointed the role of Researcher in 'Team Helen ' and my greatest source was MPIP. Thanks to all of you for providing me with information and hope so I could feed it all back to her. I think of you all every day and will you on, cheer you on and pray for you all. I shed a tear for Kevin (several) but really appreciate your  bravery, strength and sheer bloody determination.

Thank you all very much. You are pioneers.

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NYKaren's picture
Replies 6
Last reply 12/20/2012 - 11:15am

Does everyone on Z use sunscreen of SPF 30 ( or higher) on all exposed areas even in the winter? What about on rainy days?
THanks,
Karen

Don't Stop Believing

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bigb0624's picture
Replies 9
Last reply 12/19/2012 - 10:40pm

I was diagnosed in July, 2012 with Stage 4 melanoma in my stomach that metasticized to my liver.  In Aug. 2012 i found i was BRAF pos i started Zel and have had great success with it.  Tumors have shrunk, no new "hot spots", and feeling good.  This past week  after my PET scan showed great results my doctor wanted to plant the IPPI seed that i might have to make that switch sometime in the near future unless the Zel does continue to work for longer than the average.  The side effects of IPPI scare me.  Anyone have the this same scenario?

Big B 

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lou2's picture
Replies 2
Last reply 12/19/2012 - 9:53pm
Replies by: lou2, POW

Letter to the Editor

Journal of Investigative Dermatology (2013) 133, 274–276; doi:10.1038/jid.2012.268; published online 16 August 2012

Topical 5-Fluorouracil Elicits Regressions of BRAF Inhibitor–Induced Cutaneous Squamous Cell Carcinoma

Amaya Viros1,2, Robert Hayward1, Matthew Martin1, Sharona Yashar3, Clarissa C Yu4, Berta Sanchez-Laorden1, Alfonso Zambon5, Dan Niculescu-Duvaz5, Caroline Springer5, Roger S Lo4 and Richard Marais1,6

  1. 1Signal Transduction Team, The Institute of Cancer Research, London, UK
  2. 2Seccio Dermatologia, Departament de Medicina, Hospital Universitari Vall d'Hebron, Barcelona, Spain
  3. 3Department of Pathology and Laboratory Medicine, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, California, USA
  4. 4Division of Dermatology, Department of Medicine, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, California, USA
  5. 5Gene and Oncogene Targeting Team, CR-UK Cancer Therapeutics Unit, The Institute of Cancer Research, Sutton, Surrey, UK
  6. 6Molecular Oncology Laboratory, The Paterson Institute for Cancer Research, Manchester, UK

Correspondence: Richard Marais, E-mail: rmarais@picr.man.ac.uk

Abbreviations:

CuSCCs, cutaneous squamous cell carcinomas; DMBA, 7,12-dimethylbenz-(a)anthracene; KA, keratoacanthomas; MAPK, mitogen-activated protein kinase; TPA, 12-O-tetradecanoyl-phorbol-13-acetate; 5-FU, 5-fluorouracil

 

[Sorry, no abstract, but the title says it all.]

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Ali's picture
Replies 17
Last reply 12/19/2012 - 9:07pm

Just wanted to let you know how things are going for me.  I am happy to read some good reports from a lot of you.

A brief history:

3b 2007, 9 months of interferon

Feb 3c 2011, surgical excision (there weren't as many clinical trials out there for in transit lesions at this time, dang it!) watch and wait

Jan 2012, routine scans show multiple subqs, liver lesions, bones lesions

Jan 2012, radiation to femur and ichium

Feb 2012, high dose IL-2.  All 6 weeks.  Mixed response.  Many tumors gone by the end, many new tumors found in...

June 2012, 100ish subq tumors, 25 brain mets

June 2012, IPI and Temodar.  Within days tumors obviously shrinking.  Diarrhea also within days.

Sept 2012 scans show no brain tumors, only 4 tumors left in the body.  I only had one dose of IPI because of diarrhea, continuing on Temodar

Nov 2012 scans show resolution of one tumor, growth in the other three

My first option was an Anti-pd1 trial.  Just got back from Oregon trying to get into the BMS phase 1 comparing those who have had IPI and those who haven't.  i was rejected!  Because I couldn't finish all my doses of IPI (diarrhea).

This is lose-lose.  I would have responded, and they could have marked that response on their charts.  So I think we will radiate a couple of these and see if my immune system can pick up on the remaining tumors.  If that doesn't work we will try something else.  I am also BRAF positive (luckily), but I am trying to get as much immune response as I can before I go that route. 

Has anyone gotten into a pd1 trial after taking IPI (other than this one of BMS that I know they won't let me in)?  Any guesses on when this drug will be approved, are we talking years and years?  If we ever see it as compasionate use, will those who have a braf mutation be able to use it as compassionate use, even though there is that other (zelboraf) option out there?

This is a crazy journey.  So grateful to spend another holiday season with family.  Hope there are lots more to come for all of us.

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