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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zzzzil's picture
Replies 8
Last reply 3/28/2012 - 1:39am

Hi, I'm in the UK and my girlfriend is Czech... (she has Stage 3A melanoma -- so far!) ...wondering if there are any other UK or Czech users here.. or a recommended community - Thanks so much

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Jewel's picture
Replies 18
Last reply 3/6/2012 - 9:58pm

Hi Everyone,

Please forgive me for needing to rant a little. I just don't understand why SO LITTLE is being offered to Stage 3 people....basically they look you in the face and say you NEED to get worse (stage 4) before we can help you. I'm just frustrated.....and sad for everyone that is fighting this disease.

Best wishes to everyone,

Jewel

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scots's picture
Replies 1
Last reply 3/6/2012 - 7:10am
Replies by: MeNDave

I'm currently a year 1/2 NED. Completed is year of interferon and several sessions of radiation. I see my dermatologist every 3 months. Oncologist every 6 months starting this month. Last scan was in December and it was clear. How often should scans be done? Any opinions or advice would be appreciated.

Scot

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Bob B.'s picture
Replies 45
Last reply 6/15/2012 - 11:42pm

Based on a self-diagnosed melanoma (Stage 1b due to Clark IV, Breslow 0.63-.8 (2 reports), mitotic rate zero, regression etc- innocuous) I had excised in 2010 with no recurrence, I have the impression there is widespread:

   (1)  Overuse of medical tools to treat early Stage melanoma.   Biopsies, Scans, SLNB's, blood tests, etc.

   (2)  Reliance on 1960's Clark to stage melanomas.

   (3)  Underuse of Mitotic Rate to stage melanomas.   Lack of standardization of histology parameters.

   (4)  Exaggeration of the effects on melanoma of UV exposure, understating of UV necessity to fix Vitamin D-  protection against melanoma.

For eight months (since July, 2011)  I have been tracking a second tumor 20 cm from the first (above), self-diagnosed again as melanoma.   About to have it excised WITHOUT a biopsy, pathology to be done afterwards using two independent laboratories.

Any comments on the uses and disuses of medical science to treat early Stage melanomas?

 

 

 

  

The Only Good Legend is a Dead Legend.

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SRS's picture
Replies 10
Last reply 3/6/2012 - 8:02am
Replies by: cltml, kylez, SRS, DonW

I’ve been looking around this site for a few weeks now and am amazed, sometimes scared, but mostly comforted by the stories and friendly advice given.  I, too, have a story and some questions.

First, here is my dad’s story:

 At 50-years-old he was diagnosed with Melanoma in August of 2010 with a primary site right in the middle of his back at 0.95 mm deep with no SNB (SNB was discussed, however his initial oncologist decided against it).  With scans and check ups with the oncologist every 6 months, he appeared NED until November 4, 2011.  Early November he developed a baseball size tumor in his left axilla.  Due to what I believe was a lack of education (and maybe a little denial), he went to his primary care doctor who put him on antibiotics for 2 weeks (another case of lack of education).  As soon as I found out that he had been on antibiotics for two weeks I heavily encouraged that he make an appointment with his oncologist (initial). His oncologist, instead of seeing him, referred him straight to the general surgeon who had removed his primary-site melanoma.  During that appointment the general surgeon told him that he didn’t preform axillary dissections and referred him back to the oncologist.  So, almost one month later in December, the oncologist did what should have been done when the tumor appeared early November and confirmed with PET/CT that the melanoma had spread to the left axillary region (no other spread seen).  Almost another month later, December 27, he finally had the complete axillary dissection and was diagnosed stage IIIc.

Completely unimpressed with the runaround that he was given, we encouraged Dad to move his care to the best within driving distance.  He decided to go with Vanderbilt under the care of Dr. Sosman.  While in the process of waiting for randomization for an Interferon vs. Ipi trial, he developed severe back pain. On January 31, 2012 it was confirmed that Dad had a compression fracture due to lytic melanoma metastasis. On February 13, 2012 PET/CT results showed multiple tumors along the vertebrae (cervical - sacrum), tumor growth back in his left axilla, and multiple tumors in his lung.

He has had radiation to both his axillary region as well as his lumbar and lower part of his thoracic spine.  

Dad is BRAF wildtype and as far as I can make out from his report, HLA-A negative. He does have the NRAS mutation.

Dr. Sosman, after seeing the rapid spread and large tumor burden started him on Carboplatin/Taxol/Avastin February 23.  Zometa starts tomorrow.  He will get his second chemo infusion March 13.  The plan is to scan sometime in the first week of April to see if Dad is a chemo responder.  If so, he’ll complete a 3rd round of chemo before moving on to something else. If not, I understood the plan to be to start Ipi ASAP.  

I have contacted NIH regarding their TIL trials, as I have read that they are some of the best around.   I was told that Dad is not currently a candidate for TIL due to needing treatment now.  It was relayed that he wouldn’t be able to wait the 4-6 weeks for the TILs to be harvested.

I have contacted the University of Cincinnati about anti-PLD 1 antibody trials. Dad would have to show progression on any current tx in order to qualify for that study.

I have contacted MD Anderson regarding trials for MEK 162 for NRAS mutation.  Apparently that trial is on hold.

QUESTIONS:

First, Based on my father’s hx with melanoma (brief, rapidly progressing, now heavy tumor burden), does beginning with chemotherapy and Avastin seem appropriate?

Secondly, where do clinical trials play a role in this treatment process?  I’ve hit quite a few brick walls in seeking out trial options.  Does anyone know of any other institutions that have the TIL trials?

Any suggestions regarding treatment and clinical trials would be appreciated.

Thanks so much!

SRS

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Jan in OC's picture
Replies 22
Last reply 3/5/2012 - 6:38pm

Hi everyone, 

I am struggling to find the words to tell you that Dirk's battle with this horrible cancer is now over.  He passed away in the early morning hours yesterday, 3/3/12.  He was a wonderful husband and father. He was such a good man.  He maintained his sense of humor through every treatment, but at the end, he was just so tired. I  know he is mountain biking up in heaven, but those of us he left behind are very sad.  We have had 25 wonderful years together and I will miss him!

Thank you all for your advice and support during this journey.

Jan and Stephanie, loving wife and daughter

laughter is the best medicine

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azurliene's picture
Replies 10
Last reply 3/12/2012 - 4:05pm

My dad has stage 4 melanoma. Initial diagnosis was found when finding two tumors in his brain - 2 craniotomies, WBR and gamma knife have been his treatment methods so far. They cannot find his original source and as of now do not see any other signs of melanoma in his brain or the rest of his body. Next set of whole body scans scheduled for end of March.

His Dr. gave him the option of taking Temodar as a "preventative" measure. He could either do a strong dose x number of days straight and then take a break or take a lighter dose daily for 30 days. Radiation was really rough on him and he's just now starting to feel better again (although still has trouble with eating due to the taste of food) Although we'd rather he not sit back and just wait for the cancer to show up again, he's hesitant about taking the Temador because he's worried about the side effects and how they will make him feel. For those of you taking/who have taken Temodar, what have your side effects consisted of and how bad? Also, what type of a dosing schedule were you on? Daily for a month straight or larger dose x number of days straight then break?

 Thank you for any feedback - I'd really like him to "try" the Temodar but he's really worried about the potential side effects.

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My dad has stage 4 melanoma. Initial diagnosis was found when finding two tumors in his brain - 2 craniotomies, WBR and gamma knife have been his treatment methods so far. They cannot find his original source and as of now do not see any other signs of melanoma in his brain or the rest of his body. Next set of whole body scans scheduled for end of March.

His Dr. gave him the option of taking Temodar as a "preventative" measure. He could either do a strong dose x number of days straight and then take a break or take a lighter dose daily for 30 days. Radiation was really rough on him and he's just now starting to feel better again (although still has trouble with eating due to the taste of food) Although we'd rather he not sit back and just wait for the cancer to show up again, he's hesitant about taking the Temador because he's worried about the side effects and how they will make him feel. For those of you taking/who have taken Temodar, what have your side effects consisted of and how bad? Also, what type of a dosing schedule were you on? Daily for a month straight or larger dose x number of days straight then break?

 Thank you for any feedback - I'd really like him to "try" the Temodar but he's really worried about the potential side effects.

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JerryfromFauq's picture
Replies 1
Last reply 3/8/2012 - 7:26am
Replies by: Bob B.

Daily Low-dose Aspirin Substantially Reduces Deaths From Several Common Cancers

NEW YORK -- December 8, 2010 -- A study published online first and appearing in an upcoming issue of The Lancet is the first to prove that aspirin
reduces death rates from a range of common cancers.

The article is by Peter Rothwell, MD, John Radcliffe Hospital, and University of Oxford, Oxford, United Kingdom, and colleagues.

A previous paper published by Dr. Rothwell and colleagues in October 2010 in The Lancet established that long-term low-dose aspirin (ie 75
mg/day) reduced death rates from colorectal cancer by more than a third. In this new work, the authors studied deaths due to all cancers during and after randomised trials of daily aspirin versus control done originally for prevention of vascular events.

The authors studied 8 eligible trials, that covered 25,570 patients. They showed that allocation to aspirin reduced death due to cancer by 21% during the trials (based on 674 cancer deaths), with benefits apparent after 5 years’ follow-up (death rates after 5 years falling by 34% for all cancers and 54% for gastrointestinal cancers).

By long-term follow-up of patients after the trials (including 1634 cancer deaths) they also showed that the 20-year risk of cancer death remained 20% lower in groups who had previously been allocated aspirin than in the control groups for all solid cancers, and 35% lower for gastrointestinal cancers.

The latent period before an effect on deaths was about 5 years for oesophageal, pancreatic, brain, and lung cancer, about 10 years for stomach and colorectal cancer, and about 15 years for prostate cancer. For lung and oesophageal cancer, benefit was confined to adenocarcinomas. The 20-year risk of death was reduced by about 10% for prostate cancer, 30% for lung cancer, 40% for colorectal cancer, and 60% for oesophageal cancer. The reductions in pancreas, stomach and brain cancers were difficult to quantify exactly because of smaller numbers of deaths. However, the authors noted that treatment with aspirin during the trials lasted for only 4 to 8 years, on average, and so the effects on subsequent risk of deaths due to cancer may well underestimate those that would result from longer-term treatment (ie, from age 50-75 years).

Benefit was unrelated to increasing aspirin dose (75 mg upwards), sex, or smoking, but the absolute effect on 20-year risk of cancer death increased with age. However, Dr. Rothwell said that the increased effect on aspirin on cancer deaths in older people is due to general increased risk of cancer-related death in that age group. He believes that, if people are treated with 20 to 30 years of low-dose aspirin, it would be those starting treatment in their late 40s or 50s who might eventually derive the most benefit.

“These findings provide the first proof in man that aspirin reduces deaths due to several common cancers,” the authors wrote. “Benefit was consistent across the different trial populations, suggesting that the findings are likely to be generalisable.”

Dr. Rothwell noted that “these results do not mean that all adults should immediately start taking aspirin, but they do demonstrate major new benefits that have not previously been factored into guideline recommendations. Previous guidelines have rightly cautioned that in healthy middle aged people the small risk of bleeding on aspirin partly offsets the benefit from prevention of strokes and heart attacks, but the reductions in deaths due to several common cancers will now alter this balance for many people.”

The authors concluded that taking aspirin daily for 5 to 10 years, as in the trials, reduced all-cause mortality (including any fatal bleeds) during that
time by about 10%. Subsequently, there were further delayed reductions in cancer deaths, but no continuing excess risk of bleeding. In terms of
cost-effectiveness, such benefit would exceed that of established initiatives such as screening for breast or prostate cancer, potentially justifying added costs to reduce bleeding complications, such as co-prescription of a proton-pump inhibitor and further development of more effective derivatives of aspirin.

Dr. Rothwell and colleagues noted that more research is required. Effects of aspirin on incidence of cancer must be determined, both for cancers that are less commonly fatal and to determine whether the latent period before an effect is shorter than for death. More trial data are required for the effect of aspirin on risk of breast and other cancers of women. Follow-up beyond 20 years is necessary to identify any late rebound in cancer deaths. Dr. Rothwell and his study group hope to report the answers to these and other questions with new research during 2011.

“Perhaps the most important finding for the longer-term is the proof of principle that cancers can be prevented by simple compounds like aspirin and
that ‘chemoprevention’ is therefore a realistic goal for future research with other compounds,” said Dr. Rothwell.

SOURCE: The Lancet

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

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Lucassi's picture
Replies 7
Last reply 6/16/2012 - 2:14pm

Mike had a CT scan on 2/21/12 that showed a 12 mm pulmonary nodule in the upper left lobe.  The CT report states that it is highly suspicious for metastatic disease.  The oncologist has ordered a PET scan for next week.  Although there is a chance that it is not cancer, I am very concerned that the melanoma has spread.  Has anyone else had pulmonary nodules that ended up not being metastatic disease? 

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ElaineLinn's picture
Replies 5
Last reply 3/21/2012 - 3:56pm

I ha ve done so well with the first IFFi injection. Blood work was all great on my 2nd dose apptntment. Sob the dr. gave me my second dose on March 1sr and all went well. UNTIL March 2nd just got my kids to bed around 8 , my oldest son was there with me when I went into convultions. So a quit trip to close hospital and was transferedd 3 hours away to columbus Ohio where my doctor is . I find tha they think that I have some lesions on my brain causing it to swell. So today I have been put throught the ringers MRI, 6 different drawing of the blood, so many different anti sezeisure meds that I for got what they were.  Has anyone else been trought this.   I am asking for all the prayers I can get!

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Anonymous's picture
Anonymous
Replies 9
Last reply 8/27/2013 - 1:39pm
 
Over the course of 12 months, I have had several moles removed.   Four were mildly dysplastic and 1 was moderate and required further extraction.   Right now, I do not think I have any other dysplastic nevi.  I did not know about dysplastic nevi prior to this year and I am becoming very frantic.
I have a few questions.
First, what is the risk of melanoma for someone with five dysplastic nevi?
Second, is it possible that I do not develop anymore of these moles?
Have you personally known someone with numerous dysplastic nevi that never developed melanoma?
My doctor said I will have six month follow ups for two years, does this mean I am most at risk for the next two years and if I did not develop anymore in the next two years, my risk factors for skin cancer go down? 

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carolyn.k's picture
Replies 6
Last reply 3/4/2012 - 10:34pm

My husband was diagnosed with stage 4 in April 2011, with mets in both lungs, liver, spleen and femur.  His original primary was on his back, and excised 11 years prior.  He was NED for 11 years; then an unrelated screening showed stage 4 disease.  He presented with just a little nausea and fatigue.  Since there are no melanoma specialists in Sacramento, we traveled to San Francisco and interviewed doctors at UCSF, NCMC and CPMC, and ended up enrolling in a clinical trial at UCSF with Dr. Daud.  Since Thomas is BRAF/NRAS/CKIT  negative, and was 72 at the time of diagnosis, our options were somewhat limited to either Yervoy or the clinical trial.  We chose the clinical trial, which is axitinib + carboplatin + paclitaxel.  He endured 8 rounds of chemo, and has since been on a continuous, maintenance dose of axitinib since November 22, 2011.  His last 5 PET/CT scans show "stable disease" although we do not consider this a victory, as his quality of life is horrible.  On a nausea scale of 1 - 10, with 1 being very mild and 10 meaning vomiting, his nausea usually hovers around a 2 - 3, but has escalated recently, even though he is considered stable.  For the past few weeks, his nausea maintains at about a "5", and he gets little relief from all the usual anti-emetics.  To date, he has tried:  zofram, Emend, compazine, phenergan, reglan, ativan, benadryl, scopolamine patch, Sancuso patch, medical marijuana, acupuncture, fresh ginger tea, candied ginger, licorice root tea, acupressure wrist bands.  Some of these worked to alleviate the post-chemo nausea, but the only thing that gives him any relief at the moment is a combination of ativan+reglan+benadryl.  However, he keeps building up a tolerance to the drugs and we increase the dose (per Doctor's orders) which gives him a little relief.  Dr. Daud believes that most of the nausea is due to his liver disesase:  approximately 50% of his liver is involved and it is not detoxifying his food properly, resulting in the nausea.  I feed him almost exclusively a very healthy, 95% organic diet, to keep pesticides and additives out of his system.  Direct liver intervention, via chemo embolization, or other treatments isn't an option because of the size of his liver mets; it would require a lot of chemo which could damage the remaining healthy liver tissue.  We are considering switching to a PD1 trial, but as it hasn't opened up yet at UCSF, we are waiting.  Does anyone have any other remedies for persistent nausea that we haven't tried?  Any and all ideas, both conventional and alternative, would be welcomed.

Never give up.

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94z28joe's picture
Replies 15
Last reply 3/5/2012 - 6:05pm

My doctor just called me and told me he had my results. He said that he took 26 lymph nodes and saliva gland. He said that everything came back negative. Wow! Such a sigh of relief I can a least breath a little bit easier for now. I know I will have to constantly be vigil and be aware of what's going on with my body, but it's such I great feeling getting the all clear after your life's been completely turned upside down by finding out you have stage 3b melanoma. Thanks everyone ont this board for your support and stories they are such a huge help!

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justlittleoleme's picture
Replies 3
Last reply 3/2/2012 - 9:45pm

Thought I would update you all on what has been happening with my hubby.

He finished Ipi infusion #4 on 2/6/12.  Admitted to hospital on 2/17/12 with ipi induced colitis.  Five day hospital visit.

Wednesday we visited with a liver specialist as his liver enzymes continue to escalate.

Fast forward to today.  Hospital admission #2.  Liver biopsy performed an hour ago.  Likely he has ipi induced hepatoxicity.

CT scans from a week ago now show 5 hot spots on spine and right pelvic region.  We are planning to do a bone biopsy once they get the liver functioning properly.  Dr. all but assured us that there is no more immunotherapy for him.  If the spots show up as melanoma, pretty sure it is chemotherapy.  What at this point I don't know.

I am at a loss.  The spots weren't there in November when he did his scans to get into the ipi trial.  That concerns his dr.

Pray that we have a short hospital stay.  Our youngest son's 9th birthday is tomorrow and we are in the hospital 3 1/2 hours away.

barb

We don't know how strong we are until being strong is the only choice we have.

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