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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i just came home from seeing my Oncologist .  The test are in, and i am still neg for for Melanoma Cancer.  I still give God the praise and glory for the good report.  It has been a very long year, and I don't have to go back for blood work, or test until April of 2013.  My choice after much prayer was to not do chemo which was recommended.  But I decided to stay the course and go for test which I have done this past year.  So I would like to encourage you to keep your head held high and lead on a loving God.

 

Robbie

I believe in God and his son Jesus, I know that this is not everyones belief. I know that God has me in his hand, I might not like what I am going through but God is the one that gives me strength fromd day to day.

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Tina D's picture
Replies 4
Last reply 10/23/2012 - 8:10am

After my "side effect" symptoms seemed to be getting increasingly less tolerable, I was put on a 1 week break from Z. During that time, it became obvious I was having gallbladder issues, and subsequently had my gb removed. Needed recovery time and was then given another 2 weeks off. After a total of nearly 4 weeks, I restarted Z last monday evening. So far, I have had minimal side effects. Rash that has not progressed, Chicken skin (as someone on here calls it), minor joint achiness and a tiny bit of fatigue, and I have a few of those painful red nodules.I was pretty intimidated to be going back on after such a long break because of the difficult time I had been having with the side effects. No N/V thus far... wondering if perhaps it was the gallbladder issue causing me to be nauseated nearly constantly and throwing up or dry-heaves most days? I know I am only a week in, but so far I am very thankful to be feeling so well!! Enjoyed a weekend away with the family before starting back up smiley.

Just thought I'd post an update...

Tina

PS...my hair had just started growing back due to the long break, so I will have to see if what little I have begins to fall out again! Also, food is tasting normal again with the long break! At any rate, it was over-all a nice break, even with the surgery.

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momreader's picture
Replies 6
Last reply 10/22/2012 - 4:17pm

My father has melanoma in 2 places in his right leg.    It's in his lower leg and upper leg/thigh area.  He has already had a clinical trial (ipi plus mdx1106) which was a disaster for him, plus he had chemotherapy which hasn't worked.  Now they want to do an isolated limb infusion.  (Not perfusion).  Does anyone have any experience with this? What are the side effects?  What is the recovery like?  Does it affect ambulation?  Does it have good results and how long do they last?  Does anyone know the difference b/w isolated limb infusion/perfusion b/c his doctor (Sloane Kettering) said they only do ILI at Sloane.   We are nervous and any information would be greatly appreciated.  Thanks so much.

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Lenusya's picture
Replies 3
Last reply 10/22/2012 - 12:14pm
Replies by: POW, MLAZAR, Anonymous

Dear Community members,

I live in Russia and my cousin was diagnosed with melanoma 2 years ago. After two surgeries and series of chemotherapy the Doctor's prescription is Zelboraf, but it's unavailable in our country.

Do you know if there is any chance for foreigners to get it from the USA, Canada or any other country?

I would be very grateful if you could recommend any reliable e-shops, pharmacies, etc.. in your countries. Please advise.

If there is no delivery I am ready to come and buy it by myself, still I need to know where and if it is sold to foreigners...

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yoopergirl's picture
Replies 11
Last reply 10/22/2012 - 8:24am

will be getttting an infusion every 3 weeks with Paklitaxel and after 3 hours and then Carboplatin for 30 minutes. Yesterday I was sleeping most of the day,, today is better. Praying that this is the the one!!!! is anyone on this combo?

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/21/2012 - 11:37am
Replies by: POW, Sandy11, bikerwife

Hi everyone,

I'm new to the board. My father was first diagnosed with melanoma in 2009.
Unfortunately it wasn't caught early and he was stage 3 with a very large/thick ulcerated tumor and tumors that had spread to his nearest lympnodes.
He underwent surgery (to remove the original tumor and lymphnodes) and interferone treatment.

No signs of the cancer by 2011.

He just recently discovered some new masses in a distant set of lymphnodes.
Tests came back positive this morning for melanoma. (M1a?)
He'll be discussing the results with his doctor this evening.

My question now is, what can I do?

I know the statistics and the facts.
I know we're looking at some difficult treatment options and decisions.
I know we've got some scary "what if" conversations to have. (I'm the executor of my father's affairs/estate)

What I don't know is how I help?

He's not the kind of person who rolls over and takes anything without a fight, and for that I'm grateful. But I don't know what I can do. I don't live close to him so the things I would typically do to be supportive (offer to go to doctor's appointments, drop in to say hi, etc.) aren't an option now. I don't know how else to be supportive from a far. We're fortunate that we have other family and my sibling in the area to do the close by things, but what can I do from so far away?

 

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Amanda's picture
Replies 1
Last reply 10/20/2012 - 10:41pm
Replies by: Sandy11

http://www.prnewswire.co.uk/news-releases/new-four--and-five-year-survival-data-for-yervoy-ipilimumab-in-treatment-naive-and-previously-treated-metastatic-melanoma-presented-at-the-esmo-2012-congress-european-society-for-medical-oncology-171918371.html

                      "New Four- and Five-Year Survival Data for YERVOY® (ipilimumab) in Treatment-Naïve and Previously-Treated Metastatic Melanoma Presented at the ESMO 2012 Congress (European Society for Medical Oncology)"

"Give thanks in all circumstances"

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NYKaren's picture
Replies 9
Last reply 10/20/2012 - 8:43pm
Replies by: NYKaren, shellebrownies, Anonymous, aldakota22, Fen, lhaley

I went for screening today, and I am enrolled in a research study of  DPCP at Rockefeller University Hospital.  Dr. James Krueger is running the trial.  

I go for my first appointment Monday morning; they will do a biopsy on one of my many mets, ultrasound, bloodwork, photography and some other stuff.   At this appointment, they apply the medicine to a spot on each arm and on one met.  this is to see if my skin responds to it (they call it sensitizing) and I'll know if i respond by a rash.  Possibly very itchy and even blister-y.  Who knew i'd ever be wishing for a rash!

According to Dr. Krueger, in studies done in Australia, the  response rate is 50%.  Highest odds I've gotten yet.

I am cautiously optimistic and I feel lucky to be in this small study.  There will be only about 12 other participants.  The drug company, Hapten Pharmaceuticals, is small and does not have the money for a larger study/trial.  It's being funded by a variety of sources, one of which is a private foundation.  

At the same time, I will be part of a larger study (60 people) for something called a Melanoma Advanced Imaging Dermascope (mAID).  it is  new device that may predict if a skin lesion is likely to be cancerous or not.  The goal is to noninvasively predict the prognosis of a lesion to avoid the occurences of unnecessary biopsies.  Good stuff.

I'll keep you guys posted.

karen

Don't Stop Believing

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sharmon's picture
Replies 2
Last reply 10/19/2012 - 11:40pm

Brent has been on the GSK trial for 32 months and has had some real pain issures lately.  CT showed dark spots in the ribs and spine near where he has a large tumor in his side that has been there and has been stable.  It is still stable but the bones are now involved.  Either mets or fractures.  MRI is being ordered to find out.  Meanwhile he saw his Dr. at MDA and we found out he can stay on the trial since there is no growth.  Pain is a real bummer and his quality of life is being effected.  Taking pills for pain around the clock keeps it in check but when they start to wear off he really hurts. 

We know he can get into a MERCK anti pd 1 trial if he qualifies.  He needs blood work and a biopsy and a brain mri.  One of the things I need to know more about is the idea that the pd -L1 might need to be present for the pd-1 to work.

MDA is givng us a few days to decide if he wants to drop the GSK trial while we make up our minds. If he does drop out of the trial there is no going back on,  This trial has kept him well for 32 monthss.

The fear of the unknown is unbearable.  I have had nightmares and can't sleep.  To go or not to go.   One thought is that the GSK drug is soon to be FDA approved and if th Anti pd 1 fails and there is still time he can try that again., 

I know melanoma is now being called by some as a manageable disease.  He has been on Leukine. IPI carbo/taxol. bio chemo, mek, mek alimta..

We told ourselves we would stay on a treatment  until it stopped working or something better came along. 

If anyone has any ideas or suggestion or experience I could use them.

Praying for an answer and for all of you.

Sharon

 

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ladyinnh's picture
Replies 13
Last reply 10/19/2012 - 11:11pm

Good afternoon all, I'm hoping I can get some advice from you.  I was diagnosed with Stage 3b melanoma in October 2009 and just completed a total of 10 months of Interferon.

My son is 17 months old now. Two separate oncologists have given me different advice regarding trying to get pregnant again. One said wait 3-5 years to try and one said 6 months to a year.  I'm 35 and my husband is 38.  I really want to try to have another child as soon as its safe but that beign said there is much talk that women can have reoccurences of melanoma when pregnant becuase your estrogen levels rise so much.

I've been told its a huge risk and I've been told it may never reoccur.  Even my oncologists dont' seem to have any clear information about how at risk I am of getting this again.

I could really use some advice, referrals to doctors I could call re: this and information.

Thanks all in advance!

One day at a time!

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Replies by: Jim M.

Anybody else see the press release yesterday from Bristol-Myers Squibb about four and five year survival rates of Yervoy patients in several different trials? (see www.bsm.com, select news, and then press releases.) Here are the headline bullets:

  • Long-Term Follow Up From Phase 3 Study (024) Demonstrated That 19.0 Percent of Treatment-Naïve Patients Who Received YERVOY at Investigational Dose of 10 mg/kg Plus Dacarbazine (DTIC) Were Alive at Four Years vs. 9.6 Percent of Patients Treated with DTIC Alone
  • Few New Immune-Related Adverse Events Occurred Beyond Two Years of Treatment in Study 024
  • Five-Year Follow Up from Three Exploratory Phase 2 Trials Add to Growing Body of Survival Data for YERVOY in Metastatic Melanoma
  • In Both Analyses, Updated Survival Rates Remained Relatively Stable Over Time                                                                                                                                                                                                                                             

But it was the details of that reports that had some remarkable statistics. Here's one taken out of context from the results of 3 phase II trials (there were varying dosages of Yervoy among other things) so read the article:

“In treatment-naïve patients, the five-year estimated survival rates ranged from 38% to 49%, which was unchanged from the four-year rates.”

I don't try and interpret clinical study data because there are so many variables it hard for me to make a decisive conclusions(and I'm a scientist) but these claims sure sounds good.

I was diagnosed with stage IV melanoma about a year ago. After I finished my Yervoy infusions (3 mg/kg) six months ago, I have had reductions or stable tumors in all three subsequent scans (Thank You God!). But I'm having trouble finding current information on how long this this might continue. I know we all are different but would like to hear about longtime (greater than a year) survivors.

Thanks,

Mike

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JerryfromFauq's picture
Replies 7
Last reply 10/19/2012 - 9:48pm
Replies by: Jim M., swissfarm7, islandbreeze, Anonymous
I'm me, not a statistic. Praying to not be one for years yet.

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amandamini's picture
Replies 6
Last reply 10/19/2012 - 8:05pm
Replies by: amandamini, Anonymous, mel123, POW, Janner, dellriol

Hi all,

 

I was diagnosed with stage 2 Melanoma Oct. 2012.   I gave birth to a beautiful and heathy baby girl in May of this year.  During this pregnancy my husband saw a mole on my back and asked me how long I have had it.  I looked in the mirror and thought huh?  I don't recall seeing it before.  But maybe I just never noticed it. After all it is on my back. That was it.   Strange how unconcerned I was.  I was not educated on skin cancer at all!  I finally decided to make an appointment to get it checked out.  The Derm did the biopsy and a week later got the diagnoses.  So here I am...  Terrified for myself and my family.

 Tomorrow I am going into surgery to have the SNB and the excision. This week they did a Lymphoscintogram and located the sentinal node or I should say nodes as it went to 2 places.  Both my arm pits.  My first question is how is it staged when they do not know if it has spread?  When the Derm.  called me he said that it was 1.00mm which is stage 2.  Everything I have read indicates to me that it really has not been staged yet.  Also he referred me to a plastic surgeon.  Should I go to an oncologist?  Also diet-  I have read a lot about vegan diets and how it can help your body fight cancer.  I would love to hear any and all thoughts on this.

I would love to hear your stories as well!

Amanda

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Sorry to keep asking questions about interferon, but this is the particular part of the maze in which we find ourselves just now.

Hans (stage 3B) began the high-dose treatment yesterday.  So he's only two days in, granted.  And I know that each person reacts differently.  But wow!  I must say, I'm kinda surprised at how little it's affected him thus far.  His treatment is late afternoon, and both days he had some chills after.  He came home and lay on the couch, drank some tea, and within a few hours was good to go.  Went out the barn for 1+ hour at 10 pm or so, as usual.  Got up early today and was out there working as per the norm until we left for his next infusion.  Really?!  Is it too good to be true?  Or are they doing the hydration and anti-nausea meds and forgetting to give the actual drug? ;-)  Seriously, I'm curious (as always!) to hear how it played out for others.  Is it more of an accumulative effect, or...?

Best,

Colleen

Keep on keeping on.

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