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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François's picture
Replies 2
Last reply 3/3/2013 - 10:23am
Replies by: POW, aldakota22

As I said in  my older post, picture of CT Scan  was showing shrinking of lungs nodule. In fact after seeing my onc this week he said that one lung nodule  has disappeared!! and the 2 others are smaller. Great News! The sad thing is that I have an other (which I didn't know) in the groin that is shrinking as well. The onc didn't look much worried about this last one as long as the Zel is working. I asked him why I was not informed of this before and he said sometimes radiologist don't mentioned everything...On the other hand, being long time moving between bed and sofa I gained some weight and a significant increase of cholesterol, uric acid and triglyceride in my blood test as know been detected. I am now taking 40mg at night of Cardil. This is a most common side effect of Zelboral. I will start walking everyday for an hour. Next visit is 19 march to discuss this HDL problem. Next scan will be in May. I'am very satisfied with this early results and keep on with 8 pills a days

François

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Chris123's picture
Replies 12
Last reply 6/23/2013 - 7:50pm

 Recently a tumor has been found on my husband’s Iliac (pelvis bone) for which the biopsy results determined to be Stage 4 Metastatic Melanoma.  For treatment, he was provided the following two options by two different oncologists:

Option A:  Start with Radiation Therapy to reduce the size of the tumor in conjunction with Yervoy Treatments.  In the event this plan is not effective, proceed with the Merck Anti PD – 1 Clinical Trial.

Option A was suggested to initially provide for a reduction in the size of the tumor, therefore, reducing the pain and the risk of bone, muscle and or nerve damage as well as the fact that Yervoy has been proven to be effective.

Option B:  Start with the BMS Anti PD – 1 Clinical Trial and reserve Yervoy Treatments in conjunction with Radiation Therapy as a back-up plan.

Option B was suggested because it is providing interesting results and there is always a possibility that the clinical trial may close for which Anti PD-1 would no longer be available.

Please, your advice, input and or prior experiences with Yervoy vs Anti PD -1 would be truly appreciated.

THANK YOU! 

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Chris123's picture
Replies 2
Last reply 7/22/2013 - 11:06pm
Replies by: POW, LynnLuc

 Recently a tumor has been found on my husband’s Iliac (pelvis bone) for which the biopsy results determined to be Stage 4 Metastatic Melanoma.  For treatment, he was provided the following two options by two different oncologists:

Option A:  Start with Radiation Therapy to reduce the size of the tumor in conjunction with Yervoy Treatments.  In the event this plan is not effective, proceed with the Merck Anti PD – 1 Clinical Trial.

Option A was suggested to initially provide for a reduction in the size of the tumor, therefore, reducing the pain and the risk of bone, muscle and or nerve damage as well as the fact that Yervoy has been proven to be effective.

Option B:  Start with the BMS Anti PD – 1 Clinical Trial and reserve Yervoy Treatments in conjunction with Radiation Therapy as a back-up plan.

Option B was suggested because it is providing interesting results and there is always a possibility that the clinical trial may close for which Anti PD-1 would no longer be available.

Please, your advice, input and or prior experiences with Yervoy vs Anti PD -1 would be truly appreciated.

THANK YOU! 

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Amanda's picture
Replies 2
Last reply 3/2/2013 - 10:38am
Replies by: Amanda, POW

My boyfriend Randy got his second infusion of the merk-3475 pd-1 drug at 10mg/kg with previous use of Yervoy at UCLA with Dr. Ribas monday, and also had a visit with his primary oncologist, Dr. T. wednesday who was very happy with him at this time.  Dr.T measured his palpable mets and said they were stabalized.  He also said that it was the best he has seen him since he's become his Dr. (when randy was discharged from the hospital after his bowel surgery, we switched from his previous oncologist to Dr. T who knows more about melanoma. Randy was in a very weak state, and had lost a lot of weight when we met with Dr. T for the first time.  Randys tumors were growing quite rapidly for the two months before he started pd-1, including a met under his jaw bone that is about an inch long (forgot to ask the measurements) that devolped to that size in two months.  That met was the fastest growing met he has had yet i believe. 

I had been trying to get randy into the Pd-1 trial at UCLA for a month or more, waiting for the slots to open for previous ipi use.  All the while Dr. T saying we should start Dacarbazine since his mets were growing (he's braf-).  I knew from this board, and other research that Anti-Pd1 was doing so well in patient trials, i had to get randy into one.  We kept telling the Dr. we were trying to get into this trial, and luckily enough got accepted to one at UCLA.  Dr. T said randy had a good nurse (me).  ha, made me feel good.  Sorry to go on, but so far his visible mets have stabalized, pretty much right after the first dose we noticed them stop growing.  He has gained some weight, appetite is up, energy is definately up since he started, i can really tell the difference.  Plus he says he feels 'great'.  so far only some mild joint and muscle pains. 

Does anyone know how long ipi stays in the body?  After 7 months could ipi still be in there, and be working with the pd-1?

!-Amanda-!
(g/f of patient Randy)

"Give thanks in all circumstances"

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JerryfromFauq's picture
Replies 2
Last reply 3/2/2013 - 10:57am
Replies by: awillett1991, Tim--MRF

Pediatric melanomas often present with features that are clinically and histopathologically different compared with those in adults, and atypical presentation may delay diagnosis. Results of this retrospective study indicated that the ABCD criteria alone are inadequate for detecting melanoma in children, and the investigators proposed that additional ABCD criteria (Amelanotic; Bleeding, Bump; Color uniformity; De novo, any Diameter) be utilized as well, acknowledging that the specificity and sensitivity of these criteria must be validated.

Melanoma has become the “Great Obsession” for many dermatologists because too many young healthy people die because, one, they do not understand the hazards of tanning and, two, do not know the significance of the “ugly duckling sign,” the ABCDs of melanoma, and, most importantly for the diagnosis of early melanoma, the importance of showing their physician any “E”—evolving or changing mole. It is part of our job to educate the public about these issues.

A recent article by Cordoro et al complicates this matter a bit. We have always known that melanomas do not always show classic features to promote early identification; hence, the importance of identifying any evidence of evolution or change. In pediatric melanoma, a significant majority of lesions fail to show ABCD criteria, which commonly causes a delay in diagnosis. In a study of 70 pediatric melanoma patients, many of the lesions were amelanotic, arose de novo rather than representing a change in a mole, had uniform color, and often were smaller than a pencil eraser. Bleeding was a key finding. While melanoma in children is rare, unusual pigmented lesions should be either examined with a dermatoscope and/or biopsied. 

ABSTRACT

Background: Clinical and histopathologic features of childhood melanoma are poorly characterized. Atypical clinical presentations and ambiguous microscopic findings may contribute to diagnostic delays.

Objectives: We sought to determine whether conventional ABCDE melanoma detection criteria (Asym- metry, Border irregularity, Color variegation, Diameter [6 mm, Evolution [any morphologic or sympto- matic change in the lesion]) adequately detects pediatric melanoma and to evaluate clinicopathologic and outcome differences between younger and older children.

Methods: This was a retrospective study of children given the diagnosis of melanoma (N = 60) or ambiguous melanocytic tumors treated as melanoma (N = 10) before age 20 years from 1984 to 2009 at the University of California, San Francisco. Seventy patients were divided into 2 age groups: 0 to 10 years (N = 19, group A) and 11 to 19 years (N = 51, group B). Clinical, histopathologic, and outcomes data were collected. Main outcome measures were time from diagnosis to death and predictors of metastasis and death.

Results: In all, 60% of group A and 40% of group B children did not present with conventional ABCDE criteria. Rather, amelanosis, bleeding, ‘‘bumps,’’ uniform color, variable diameter, and de novo develop- ment were most common. Histopathological subtypes differed significantly between groups (P = .002). In all, 44% were histopathologically unclassifiable using current melanoma subtypes. Stage IIA disease or higher comprised 92% and 46% of groups A and B, respectively (P = .05). Ten patients died: 1 in group A and 9 in group B. Of these, 70% had amelanotic lesions, and 60% had at least 1 major risk factor. Breslow thickness predicted metastasis (adjusted odds ratio 12.8 [CI 1.4-115]).

Limitations: The retrospective design resulted in incomplete data capture.

Conclusion: Additional ABCD detection criteria (Amelanotic; Bleeding, Bump; Color uniformity; De novo, any Diameter) used together with conventional ABCDE criteria may facilitate earlier recognition and treatment of melanoma in children.

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

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JerryfromFauq's picture
Replies 1
Last reply 3/2/2013 - 12:23pm
Replies by: Janet Lee
I'm me, not a statistic. Praying to not be one for years yet.

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5374brian's picture
Replies 3
Last reply 3/3/2013 - 9:07pm

My wife was diagnosed Dec 7 2012 with stage 4 metastized melanoma. We had our first appt. at Moffitt Cancer Center in Tampa before the holidays. Scans showed lung , abdomen and brain. The brain had one spot 4mm that Moffitt recommended one treatment radiation which was done in Jan.2013. Also in Jan. they started her on Yervoy. Her side affects have been mostly fatigue. After the first treatment several small spots popped up arm, biceps, back, around her breast and neck. We went back for the 2nd treatment Feb. and was told this is ok due to part of the treatment causes inflammation then the yervoy will start fighting. Now we went back this past Tuesday for the 3rd treatment and the larger tumors that were measured before one on her neck and the other on her back  had gone down about 1cm each. I guess what i am wondering, is this a typical path for someone on IPI. Maybe nothing is typical. I feel my wife and i were hoping for much greater results by now. She had no primary found. She is 35 years old and has no symptoms of anything wrong until the fatigue that was brought on by the Ipi. Thanks in advance for all your thoughts. i have loved reading the post on this site since we were told about in Jan. 

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Kim K's picture
Replies 2
Last reply 3/3/2013 - 2:25pm
Replies by: Colleen66, Phil S

This seems to be a common topic so I will post what we decided to to with me :).

I wasn't able to "graduate" to yearly scans and I understand that.  (Gotta respect ol' Mel, the ultimate enemy).  This is what the new game plan is in light of my NED following IL-2, and the great article on long term survivors who underwent treatment with success.

I will continue to get scanned every 6 months until????, but instead of doing everything I will alternate between whole body CT (without GI contrast - yippee), and PET/CT.  Any small bowel lesions should show up on the PET if missed on the CT without contrast.  My brain MRI's will be done annually instead of every 6 months.

I am so glad to be able to reduce the types and numbers of scans, yet keep an eye on things every 6 months by doing some sort of whole body scan.  This reduces cost, time spent away from home (I fly to Oahu and usually have to spend the night), and exposure to contrast materials and extra radiation, yet still keeps an eye on things twice a year.

Not bad.  Makes sense, great compromise.

My doc and I still don't care for the idea of scan only if you have symptoms, especially in light of the newer drugs and clinical trials.  By the time you have symptoms, you might as well be planning your funeral.  I never had symptoms of stage IV disease, and the only reason my mole was even biopsied was because it was black and began to itch.  IT never followed the ABCDE or ugly duckling criterion.  At most there was the itch and uneven elevation with very subtle asymmetry.

Oh... and I got sort of scolded for not doing more regarding patient advocacy.

1. Our pre-vet club is highlighting skin cancer for our college RFL next week.  I also plan to add our veterinary patients to that as well.  Carole K had some great materials that I have kept for just this purpose.

2. There is upcoming legislation for HI to enact a tanning bill similar to other states that have done so previously.  I may need y'all to blast our legislators when the time comes.

3.  I went to a school meeting to fight against the No sunglasses or hats allowed rule.  It is stupid, NOT sun-safe, and I don't see what the problem is about calling a kid out who's wearing a cap gangster style or wearing sunglasses indoors about the proper ettiquite of hats and sunglasses in public.  I was extremely pissed about no sunscreen in school because you can apply it at home.  (Like the stuff lasts all day?!).  I am currently trying to come up with an idea on how to survey our schools on their sunscreen policy so we can allow for it in school.  Perhaps even develop a sun-safety curriculum.

4.  I wish we would pass all playground equipment be covered by 99% sunproof sails or shades that will protect the play area from 10-3.  Not only will it prolong the lifespan of the equipment and prevent burned backsides on slides, but will encourage excercise.

I have taken on steps 1-3 and am trying to work on 4.  I guess I have to put more effort and voice behind what I have done so others will finally listen.

(Hi Dr. Morita if you are reading this ;O)

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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NatashaBishop's picture
Replies 1
Last reply 3/2/2013 - 12:51am
Replies by: Cielo

Hi Everyone,

Just an update on my Dad and some questions. He completed 5 days of CVT Wednesday for mel in his brain, lung, muscle and bone. He's handling it pretty well so far. He's been able to keep his food down for the most part, no headaches since starting the chemo, he still has blurryness in his right eye (due to the brain lesions), he is unsteady on his feet, and very forgetful (chemo brain?). He had a really rough morning today but I talked to him this afternoon and he sounded great and he was able to walk 3 blocks. He has 15 days off now and then we do a scan to see if the chemo is working (that'll be a nerve wracking day). I'm curious how chemo plays out during these 15 days. I know that it is attacking the cancer cells in his body and he'll probably have good days and bad. Any experience as to what to expect over the next 15 days? I'm mostly curious about his blood count and when that begins to see an impact. 

I'll be heading out from March 6th to 16th to take care of him while my Mom returns to Florida for work. My Dad is currently being treated in Houston at MD Anderson. So any heads up or advice would be much appreciated.

Thanks!

Natasha

We can do this!

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Anonymous's picture
Anonymous
Replies 2
Last reply 3/1/2013 - 7:23pm
Replies by: Erinmay22, awillett1991

Given that Melanoma makes us total worry warts... a few weeks back I got a horrible rotten head cold.  I still have some lingering congestion.  During that time I did get migraines a few times (the visual distriburances... I have noticed that caffeine is my trigger for those).  But I've also noticed an increase in eye floaters.  Now a lot of this is probably due to the fact that I noticed they were there and not can't stop looking for them!  

I did see my opthamologist who said my eyes look great!  and I'll be in to see my doctor on Monday so I'll for sure bring it up!  

But curious - did anyone on PD1 have an increase in eye floaters?  or anyone worst case/thoughts - did you notice this happen and then find out there was a brain tumor?  

I'm sure it's 90% anxiety!  with dry eyes and everything else going on...  

Thanks!

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Janet Lee's picture
Replies 17
Last reply 3/3/2013 - 9:29pm

Please forgive me if I am being redundant in my posts. You have been helpful and I've learned a lot in a pretty short period of time. But things in our household are changing so rapidly and we are so scared, I need some help and reassurance about what we're doing and what else we should be doing.

My wonderful husband, Don, was diagnosed just 2 short months ago (1/17/13) with Stage IV Metastatic Melanoma. We thought he had a bad disk (back pain). No history of melanoma (couple of basal cell spots removed in earlier years). We were just getting ready to retire and spend a winter in Florida. Never found primary.

He had one asymptomatic lesion in his left frontal lobe; Cyberknife performed 2/8/13. Two pelvic masses and another lesion at the base of his spine, received 12 radiation treatments in attempt to alleviate pain (helped a little). Other tumors in muscle along his spine, at base of neck, adrenal gland, small nodules in lungs, and recently discovered one or two in stomach/esophogus.

His disease is pretty widespread. He's being treated at Dana Farber, who wanted him on Zelboraf. Insurance company denied it because he is BRAF V600R, not V600E. It is now in third appeal in Washington (he has a BC/BS Federal Plan). I AM LOOKING FOR ANY RESEARCH/SUCCESSFUL EXPERIENCE/KNOWLEDGE OF ZELBORAF'S EFFECTIVENESS ON V600R MUTATION THAT MIGHT HELP IN THIS APPEAL!

On 2/15/13, Don was given his first infusion of Yervoy. A few days later, it seems all hell broke lose. His right leg became almost paralyzed, his right arm extremely weak, and he was overcome by extreme exhaustion. He spent a week in Brigham & Women's Hospital. They felt he had tapered too quickly off the steroids, so they gave him high dose injections and he's now on 16mg a day. His red blood count was so low, they gave him two units of blood. This is when we found out that he has mets in his stomach/esophogus which are "seeping" blood. The brain met is now larger than it was a month ago and there is inflammation around it, so they are now suggesting surgery to remove the brain tumor.

I have so many questions. This is all so fast! Brain surgery is scheduled for Tuesday, March 5. Don is an otherwise healthy, robust man; 6-foot 1-inch, 200 pounds. I have to lift his right leg for him to get into/out of the car, up the stairs, etc. He can barely sign his name with his weakened right hand.

I need to help save this man's life, as he is MY life. I'm so confused about the treatments and the clinical trials. Some say no brain mets, others say brain mets allowed. What meds and trials should I be asking his melanoma oncologist about? I believe she knows what she's doing, but I know I have to be our own advocate!

Thanks for helping! I'm so scared.
Janet 

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tjndnd's picture
Replies 5
Last reply 3/8/2013 - 4:09pm
Replies by: tjndnd, lou2, Anonymous, POW

Hi,

Just wanted to share this since I've seen a lot of questions regarding the topic, and because of how much of a hassle it was to find insurance for my wife.

My wife and I are in our early 30's - so we weren't thinking too much about life insurance - until my wife's diagnosis.  She was diagnosed with spitzoid melanoma, no-ulcerated, 1.1mm, no mitotic rate, clarks level 4.  Her SNB came back negative.

After we got the SNB results, I called various life insurance company's - most of which told me that there was a "seasoning" period, or that the annual premiums would be $1500-1700. 

I finally called a "broker" type company - who found multiple carriers who would insure my wife.  One was a MAJOR company - highly rated - and she was quoted at 30 bucks a month for a 30 year term policy of $250,000.  I didn't believe this, and asked if melanoma was excluded.  She said no - there were no exclusions. 

Just got the policy yesterday, and it was indeed 33 and change a month.  I'm not here to "advertise" - but just letting you know with a little determination you can indeed find life insurance after a recent diagnosis.  It probably will obviously depend on how serious the invasion is however, and if it's spread the lymph nodes or not.

 

Thanks!

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Hi,

Just wanted to share this since I've seen a lot of questions regarding the topic, and because of how much of a hassle it was to find insurance for my wife.

My wife and I are in our early 30's - so we weren't thinking too much about life insurance - until my wife's diagnosis.  She was diagnosed with spitzoid melanoma, no-ulcerated, 1.1mm, no mitotic rate, clarks level 4.  Her SNB came back negative.

After we got the SNB results, I called various life insurance company's - most of which told me that there was a "seasoning" period, or that the annual premiums would be $1500-1700. 

I finally called a "broker" type company - who found multiple carriers who would insure my wife.  One was a MAJOR company - highly rated - and she was quoted at 30 bucks a month for a 30 year term policy of $250,000.  I didn't believe this, and asked if melanoma was excluded.  She said no - there were no exclusions. 

Just got the policy yesterday, and it was indeed 33 and change a month.  I'm not here to "advertise" - but just letting you know with a little determination you can indeed find life insurance after a recent diagnosis.  It probably will obviously depend on how serious the invasion is however, and if it's spread the lymph nodes or not.

 

Thanks!

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akkcak's picture
Replies 6
Last reply 3/2/2013 - 8:41pm

Just found out i have a 4mm spot in my brain that is near the thalamus. Was told it is too deep to biopsy. I don't see dr until next week. Am i looking at srs? What about other treatments in conjunction with it? Can't do yervoy. Other options?

Thanks!
Amy

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Lauri England's picture
Replies 9
Last reply 3/1/2013 - 8:13am

Doctors office called today and said there were no cancer cells found in the bone.  They are not sure what was there but not cancer.  What a relief.  Now to continue on with life.  The rib biopsy is very painful and I guess I will be healing for a while.  Just glad it over and all clear.  Still NED.. Yahhh

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