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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NYKaren's picture
Replies 15
Last reply 2/16/2014 - 8:35am

Hi all,

Yesterday I had MRI, saw onc and neurosurgeon. 

Dr. Pavlick saw regression on some of those pesky scalp mets, and my LDH went down a few more points. It had been quite high, went down a lot last month after starting MEK, and continued. So I'm stable.  I just love her. I never thought I'd like someone as much as Dr. Wolchuck, but they're both terrific. 

Then on to Dr. Kondziolka, my Neurosurgeon. All 16 of my brain mets are smaller or resolved, and no swelling. I've been off steroids for over a month.   When he told me that 10, even 5 years ago, it would not have been possible to Gamma Knife so many mets, I asked if it was because advances have been made with the GN.  he said no, it's because of the advances in the ways they've learned to use it.  Not so long ago, it would have been WBR.   He was delighted at my affect; said I was sharp as a tack. Lol. 

Also, Dr. P was going to be speaking to Merck about expanded access; will let you know. 

Karen

Don't Stop Believing

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mary in Rhode Island's picture
Replies 7
Last reply 2/16/2014 - 4:53pm

I had a pet scan yesterday and all was ok.  After being on Z for 27 months I will be off it for 2 weeks due to that Q-T cardiac wave......getting way to far part.  We will evaluate in 2 weeks and see what is next.  I am thinking if the Q-T wave gets better ...maybe a lower dose of the Zelboraf.  If not we will proceed from there  I have been very fortunate with the Zelboraf  getting rid of the mel in my pancreas and other areas.  So       we will see what the future brings.  Thank goodness I had cardiograms every month.. Best wishes.

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ljhncj12345's picture
Replies 15
Last reply 2/15/2014 - 8:33pm

Larry had what we all thought was a good response to ipi after only 3 infusions in Febuary March and April 2013. We had 8 really good months. Scans 2 weeks ago showed 2 brain mets and one in his lower back by his intestines. doctors have been trying to get the braf + mek combo approved through insurance for two weeks now They will only approvve the Dabrafenib. Since he was intolerant to vemurafanib in 2012 ( he could only  take it for 3 weeks because of fevers and dehydration) his oncologist says he needs the mekinest with the Dabrafenib. 2 days ago he started having severe pain in his leg. X ray showed a 3 inch met in his femur. In 2 weeks time this disease has taken him from walking 3 miles a day to strggling to walk accross the room on cruthces. I just hope  can make it 3 more weeks until new insurance kicks in and we can see if they will approve meds.

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billie jo's picture
Replies 7
Last reply 2/15/2014 - 12:34pm

i recently have had melanoma removed from my pelvic area and now it is my lymph nodes in my groin i had a pet scan today but i am so worried noone is telling me anything and everything that i have read on the internet is not good i dont know what to do i cant eat sleep are anything worry thats it does anyone have any advice thank you billie jo

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JerryfromFauq's picture
Replies 2
Last reply 2/14/2014 - 1:05pm
Replies by: BrianP, JerryfromFauq

 A friend asked about this trial.  She was looking at it in Canada and would like to chat with someone that is envolved in the trial.   Her post: I was looking into a trial called TH302, but denied because I am transfusion dependent. Doesn't matter I didn't really want to do it, and I am doing TILS. And I would be the first in Canada to do it with Melanoma. My question is has anyone heard of this yet in the USA? Is a really cool concept for the drugs action.

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

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Anonymous's picture
Anonymous
Replies 0

Are people who've had one type of cancer more likely to also get other types of cancer, once your body has "allowed" cancer to happen - does that indicate it will fail in preventing tumors in general?

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kpcollins31's picture
Replies 3
Last reply 2/12/2014 - 10:01pm
Replies by: POW, Fen, JerryfromFauq

I thought it would be worthwhile to post about my experience with a recent bowel resection (2/4/2014) to help take away potential fear that someone about to go through something similar might have. I know I had anxiety not knowing what to expect and it helped to get feedback from some of you on this forum.

Pre-Admittance - I was admitted to the hospital the day prior to surgery for bloodwork and bowel prep. Bowel prep consists of drinking a gallon of a polyethylene glycol solution ("GoLytely")... one small cup at a time over several hours. This was not bad at first, but drinking a gallon of anything is tough. They gave me lemonade flavored Crystal Light to help as the solution itself tastes horrible. This was unpleasant, but I got through it.

Surgery - Day is mostly a blur. Prior to surgery, you get to hear all the scary disclosures about potential complications from the anesthesia. They gave me an epidural in the staging area for the OR... completely painless as they gave some medication through the IV prior. I remember going into the OR and being slid onto the operating table. As soon as my eyes began to open, I was in the recovery room and they wheeled me to my overnight room. I do not remember much... limited pain and a lot of sleep.

+1 Day - This was the toughest day. You become aware of the pain, but you have a pain button that you can push that administers pain meds through the epidural... it is effective. I also woke to realize I had a catheter which was my first experience with this and something I was really afraid of - truth be told, it was not too bad... it was not painful (they put it in while I was under). They tried to have me stand while measuring my blood pressure, but it dropped so low I almost passed out. Most of the day I spent sleeping.

+2 Days - Feeling a little better. Needed a helping hand to sit up in bed as it was too painful to do on my own... those pesky abdominals. Blood pressure starting to normalize. More time awake. Able to get up and move to a nearby chair with help.

+3 Days - This was an important day and I felt a lot better. They removed the catheter... uncomfortable experience but not painful. I felt comfortable enough to walk in the hallways to help stimulate the bowels. I walked a lot and it felt good to do it. By the end of the day, bowels showing signs of waking up... never been so happy to have gas. They moved me to a clear liquid diet.

+4 Days - Felt too good to be in the hospital and the nurses said I looked to good to be there. I was walking constantly in the hallways. Bowel function returned. They removed the epidural. They moved me to an unrestricted diet... I still used judgement and kept it really slow. They were watching for nausea and I had none.

+5 days - Released from the hospital. Feeling good but taking it slow.

The very next day, I felt comfortable enough to work from home. They sent me home with Percocet, but I have not needed to use many of them. Today (+8 days) I will likely not use any. Thinking back, I think the most painful part of the whole experience was removing the damn surgical tape... I got a free waxing. This experience also reminds me of the body's amazing ability to heal. Hope this is helpful to anyone about to go through this experience - feel free to PM me with questions.

Kevin

 

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Jahendry12's picture
Replies 17
Last reply 2/16/2014 - 2:03am

I'm sitting at Rush Univ Med Center while my husband is having a 3 month follow up CT.  If results are good, he will be 1 year NED with stage IV melanoma.  Hoping to report good news!

Saying my prayers and keeping the faith. 

Julie

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Interesting that this relationship has been known about since at least 2008.

http://www.cancernetwork.com/end-life-care/synergizing-radiation-therapy...

Excerpt:   "

Reduction to Practice: Preclinical Studies
External-Beam Radiation and Cancer Immunotherapy

In vivo preclinical studies have demonstrated that the combination of tumor-focused external-beam radiation and immunotherapy can facilitate antitumor immunity better than either modality alone. Younes et al[24] studied endogenous T-cell responses to renal cell carcinoma with bilateral pulmonary metastases in a murine model and observed that local irradiation to the left lung in combination with systemic IL-2 (Proleukin) therapy led to greater tumor reduction in both lungs than was achieved by either modality alone.

 

For active specific immunotherapy, therapeutic cancer vaccines are being investigated. TAAs such as CEA and MUC-1, which are overexpressed on a wide variety of tumor cells in vivo,[25] are being studied as targets for vaccine-mediated immunotherapies.[26-29] Chakraborty et al[30] have focused on the combination of low-dose radiation (8 Gy) delivered directly to the tumor, and active therapeutic vaccination for the treatment of subcutaneous murine tumors. There, the vaccine was composed of poxviral vectors that express CEA and three T-cell costimulatory molecules: B7-1, ICAM-1, and LFA-3 (CEA/TRICOM). Although either modality alone was ineffective, the combination of radiation and vaccine was not only curative in 50% of mice bearing CEA-expressing tumors, but also imparted protection from subsequent tumor challenge.

Interestingly, mice cured of tumors demonstrated “antigen cascade”; that is, they developed CD4-positive and CD8-positive T-cell responses not only for CEA, but also for other tumor antigens not encoded in the vaccine, such as p53 and gp70. The immune response to gp70 was much greater than that seen to the vaccine-encoded CEA, suggesting that the immune response to the cascade antigen may play an important role in antitumor activity. This antigen cascade phenomenon has also been observed in patients enrolled in clinical trials (see below).

Bone-Seeking Radionuclide and Cancer Immunotherapy

In advanced stages, many primary human carcinomas such as thyroid, breast, kidney, prostate, and multiple myeloma typically involve painful bone metastases that require palliative therapy. Strontium-89 (89Sr, Metastron) and samarium-153 (153Sm lexidronam, Quadramet) are bone-seeking radiopharmaceuticals used to relieve the pain of metastasis to bone. The calculated dose of palliative radiation delivered to bone metastases by 153Sm lexidronam is between 18 and 80 Gy[31,32]—doses that have been associated with phenotypic modulation of human tumor cells.

In one study, 10 human tumor-cell lines representing classes of tumors that metastasize to bone (4 prostate, 2 breast, and 4 lung) were exposed to clinically relevant palliative levels of 153Sm lexidronam for 4 days, then examined by flow cytometry for modulation of several cell-surface molecules. Of the 10 cell lines, 100% upregulated Fas and CEA, 70% upregulated MUC-1, 40% upregulated MHC class I, and 30% upregulated ICAM-1. Upregulation of any of these surface molecules could potentially render tumor cells more susceptible to killing by CTLs.[33]

 

 

 

 

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

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JerryfromFauq's picture
Replies 7
Last reply 2/12/2014 - 6:13pm

Cobourg patient drew the 'short straw' in cancer drug trial | Toronto ...

4 days ago - Adrienne Lotton has Stage 4 melanoma; a drug still in testing could ... FREE SATURDAY STAR with a DIGITAL ACCESS SUBSCRIPTION Find out more .... In Canada, the Special Access Program allows a doctor to apply to ...

Adrienne Lotton, 34, seen here in a photo taken last year, has Stage 4 melanoma and is in rapid decline. Her mother, Marilyn Lotton, is desperately trying to get access to nivolumab, a promising drug that's currently in Phase 3 trials. But its manufacturer, Bristol-Myers Squibb, won't release the drug.

By: Jessica McDiarmid News reporter, Published on Fri Feb 07 2014

Adrienne Lotton is 34 years old, a newly minted veterinarian who organizes food drives and goes to the gym.

Or, she used to. Now, she’s stricken with a deadly illness. And she’s running out of time.

And her hopes of avoiding death or buying more time are tangled in the web of medicine and moral quandary that surrounds access to developmental drugs. It’s a wrestling match between the interests of one patient and many; between scientific rigour and desperate hope; between benefit and risk; ultimately, between the chance to live and certain death.

Lotton was diagnosed with Stage 4 melanoma in the spring of 2012, not long after she had moved to Regina, Sask., to work at an animal clinic.

Melanoma accounts for 5 per cent of skin cancers but 77 per cent of deaths. The five-year survival for metastatic melanoma is 15 per cent.

Lotton came home for treatment at Princess Margaret Hospital in Toronto. After radiation, chemotherapy and a new drug, ipilimumab, Lotton went back to work in Regina, back to the gym, back to her life.

“She was so excited, we were all so happy,” says Lotton’s mother, Marilyn. “But it was short-lived.”

Three months later, Lotton’s checkup at Princess Margaret showed lesions in her abdomen. She came home for good.

“It’s just been downhill ever since,” says Marilyn.

But there is a new drug, nivolumab, that’s showing promising results in treating advanced melanoma in clinical trials.

Lotton made it into a Phase 3 trial last fall. But she landed in the control group that would receive currently proven treatments that, for her, aren’t working. She couldn’t get the drug.

“She pulled the short straw,” says Marilyn. Lotton withdrew from the trial and her oncologist asked the pharmaceutical company, Bristol-Myers Squibb, to release nivolumab on compassionate grounds. The company refused.

Bristol-Myers Squibb hasn’t released nivolumab outside of clinical trials. Darcy Doherty, a 48-year-old father of three, died of melanoma in July 2012 after waging a highly public campaign for access to it.

The company says there isn’t enough information yet to use it outside a trial.

“We empathize with patients who have limited treatment options and will continue to assess available data on nivolumab to determine if the established benefit/risk profile allows for expanded access use outside a well-controlled clinical trial in the future,” says a statement emailed by spokesperson Sarah Koenig.

Clinical trials are done in phases. The first and second phases determine a treatment’s safety and effectiveness. Phase 3 involves a large group to confirm earlier results and compare it to other treatments. That usually means part of the group receives the new treatment and part does not.

For those, like Lotton, whose lives potentially hinge on a random selection of who gets what, it’s excruciating.

Dr. Janet Dancey, who leads the High Impact Clinical Trials program at the Ontario Institute for Cancer Research, says it’s a balance, between the care of an individual and research that improves treatment for all patients.

“The desire to do the best you can for a patient and for a patient to get the treatment that you think could help them, versus the need to be certain that treatments really work and that there’s a real benefit and it’s worth whatever risk, that’s always going to be a tension,” says Dancey, who is also director of clinical translational research at NCIC Clinical Trials Group. “There are no easy answers to this. There’s no one-size-fits-all.”

Researchers are obligated to prove a drug or treatment is safe and effective, says Dancey. And Phase 3 trials are the most rigorous testing that can be done. Treatments that showed great promise in early phases of testing have tanked in Phase 3.

“We’re all aware of those examples, where we thought from early results that we had a winner and in fact, what we ended up with was something that was no better and in a few cases at least, was actually worse,” she says.

In Canada, the Special Access Program allows a doctor to apply to Health Canada to authorize a company to dispense a drug that’s in development. But no one can make the company do it.

The push for access to trial-phase drugs has its roots in the 1980s, in the early days of the AIDS epidemic, says Udo Schuklenk, Ontario Research Chair in Bioethics at Queen’s University. People were dying, desperate to get into clinical trials that might offer them a new lease on life and not satisfied that only half those participating would actually get treatment.

“The idea that you could force people, in a liberal democracy, that are fighting for their lives . . . into clinical trials because you just prevent them from accessing potentially life-preserving medication by other means is just ludicrous,” says Schuklenk.

Francoise Baylis, a health-care ethics expert at Dalhousie University, says those entering clinical trials need to understand what research is.

“The purpose of participating in a trial is not to access treatment,” says Baylis. “The purpose of participating in a trial is to contribute to knowledge production.”

It’s not known, at trial phase, whether a new treatment will work better than the current best practice. If it was, it wouldn’t be a trial — it would be treatment, she says.

“The very treatment you have today is because somebody else participated in a trial,” says Baylis. “Along the way, some people will benefit, some people will be harmed. But it’s a bigger picture, a different goal, that’s looking at a population of people and saying to the individual: Can you help us achieve this goal for other people like you?”

But that doesn’t make it hurt less for those who feel the means to saving their life or the life of someone they love is just out of reach.

Frank Burroughs founded the Abigail Alliance for Better Access to Developmental Drugs in Virginia after his 21-year-old daughter died of cancer. The family had lobbied hard for access to what’s now marketed as Erbitux, then a promising drug in trials.

“It’s like your child has fallen off a boat, and there’s a life raft there with a rope on it and somebody is telling you that you can’t get that to them,” says Burroughs. “At least try to get it to them. It might not work, but at least let me have the life raft so I can throw it over the side and maybe reach this person.”

Professor Arthur Schafer, director of the University of Manitoba’s Centre for Professional and Applied Ethics, says patients should have the choice to access experimental drugs. But he cautioned that, usually, drugs aren’t the miracle people hope for. They may only add a few weeks or months, and side effects can render that time “wretched.”

“Many patients and their families think, and many people in society think, that if you’re dying and your prognosis is very bleak, then you have nothing to lose. I don’t agree,” says Schafer. “If you’re taking aggressive therapy . . . your last days, weeks or months of life are not spent quietly and in a dignified way, talking to your family, saying goodbye, putting your affairs in order. What you lose is an opportunity to die well.”

Lotton is at her mother’s home in Cobourg. She’s trying to get into another trial. She’s been upbeat through her illness, keeping a blog that documents her battle wryly, wittily, encouraging friends to donate blood to replace what she’s using through transfusions.

They are still hopeful, that the next trial will go well, that something will come out. That BMS will give them the drug that could save her.

“I’m a mother and it’s really hard to see your child suffering,” says Marilyn. “I have to do something.”

She will do anything, go anywhere, to save her daughter. But the best chance depends on a pharmaceutical company.

 

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

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Anonymous's picture
Anonymous
Replies 3
Last reply 2/14/2014 - 9:20am

Husband is Stage 3A. Did not qualify for vaccine at UVA. Thank you in advance for any and all suggestions!

Lindsay Wise

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arthurjedi007's picture
Replies 14
Last reply 2/12/2014 - 5:36pm

My Dr believes since I never responded to zelboraf the combo (tafinlar/mekinist) will not shrink anything either. My dermatologist said it targets the braf and mek but if I have the nras mutation it will not work. But they both want me to try it.

Are what they saying right or did I misunderstand them?

Can't they test to see if I have the nras mutation? If so why not test for the c-kit, gnaq, gna11? Others? Can they test it with a simple needle biopsy even in a bone tumor? If a person has the nras mutation and this combo does not work on that assuming that's true then why prescribe it?

I'm still trying to get into a pd1 trial but it is taking forever and if I take this it will exclude me unless I stop taking it 4 weeks before.

So far I've had radiation, zelboraf, yervoy.

 

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KYDonna's picture
Replies 17
Last reply 2/13/2014 - 12:20am
 
 
I have a question for all you warriors and caregivers! I need help because I am not dealing well!
 
Darryel, my husband, was originally diagnosed Stage IV in 1/2012-mets to spine, liver, pelvis, lymph nodes. He started on Zelboraf and had been doing pretty well on it. The oncologist did CT scans, first every three months, then every four months, but only of his abdomen. November 2013, one week after a clean CT scan, he had a seizure. MRI found multiple brain mets, all small. Had WBR and now he is on Tafinlar, seems to be doing relatively well aside from extreme fatigue and some morning nausea. 
 
I am totally stressing, maybe b/c I wonder why only abdominal scans were done. His onc, not a melonama specialist, has no plans on doing a CT scan anytime soon! Darryel is scheduled to have a follow-up MRI of his brain in March, which is great, but I am terrified of waiting so long to do a scan of his abdomen!! I asked yesterday if we could just do another scan at least at the 6-month mark (which would be May) but was told NO. 
 
Am I putting too much emphasis on the scans? And how in the world do we live any kind of normal life with the fear of all these unknowns??
 
Any advice would be greatly appreciated-thank you all for being here!

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KYDonna's picture
Replies 0
 
 
I have a question for all you warriors and caregivers! I need help because I am not dealing well!
 
Darryel, my husband, was originally diagnosed Stage IV in 1/2012-mets to spine, liver, pelvis, lymph nodes. He started on Zelborad and had been doing pretty well on it. The oncologist did CT scans, first every three months, then every four months, but only of his abdomen. November 2013, one week after a clean CT scan, he had a seizure. MRI found brain mets. Now he is on Tafinlar, seems to be doing relatively well, aside from extreme fatigue and some morning nausea. 
 
I am totally stressing, maybe b/c I wonder why only abdominal scans were done. His onc, not a melonama specialist, has no plans on doing a CT scan anytime soon! Darryel is scheduled to have a follow-up MRI of his brain in March, which is great, but I am terrified of waiting so long to do a scan of his abdomen!! I asked yesterday if we could just do another scan at least at the 6-month mark (which would be May) but was told NO. 
 
Am I putting too much emphasis on the scans? And how in the world do we live any kind of normal life with the fear of all these unknowns??
 
Any advice would be greatly appreciated-thank you all for being here!

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Linny's picture
Replies 3
Last reply 2/11/2014 - 3:23pm
Replies by: Linny, KYDonna, POW

Scancell Gets US Orphan Drug Tag for Metastatic Melanoma

LONDON (Alliance News) - Scancell Holdings PLC said Tuesday its SCIB1 ImmunoBody metastatic melanoma treatment had been granted orphan drug designation by the US Food and Drug Administration.

This designation means that Scancell can qualify for a 50% tax credit for clinical trials of the treatment, a waiver of the prescription-drug user fee for the drug-approval procedure, and seven years of market exclusivity.

The orphan drug designation is designed for rare diseases that affect less than 200,000 people in the US, or treatments that are not expected to recover the costs of development and marketing the drug.

Shares in the biopharmaceutical company were trading up 5.5% at 37.17 pence Tuesday morning.

http://www.lse.co.uk/AllNews.asp?code=6ku2pksd&headline=Scancell_Gets_US_Orphan_Drug_Tag_For_Metastatic_Melanoma_Treatment

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What in the world is an SCIB1 ImmunoBody metastatic melanome treatment?

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

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