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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Gene_S's picture
Replies 3
Last reply 8/6/2012 - 10:07pm
Replies by: Anonymous, ToddC, chalknpens

Here is an excellent video about cancer in general, it is a must see video!

http://www.youtube.com/watch?v=WnaBG177VIw&feature=related

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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himynameiskevin's picture
Replies 13
Last reply 8/6/2012 - 7:56pm

Hi all,

Sorry for the delay, and the length, but here's the latest..

I had an MRI on the 23rd that showed new/growing tumors in the head, none over a 1 cm. A day or two later I noticed a lymph node in the groin was swelling, this same one appeared around the same time of brain tumors in Jan/Feb. It completely went away after starting Zelboraf, not even showing on a PET scan. It's weird to me that the same one, same spot, came back now, same time as my brain is under assault again... maybe there's a correlation?

I had a "detailed MRI" yesterday, for a clearer picture, and preparation for more SRS or WBR. But no call from the doc. She and I have always had an agreement that'd she calls me the day of the scan to update, whether good news or bad, she always has. But not this time, I'm really hoping it's just because theres not really any change from this scan and the last.

I finally, got my PET scan scheduled for Monday morning, it's a little upsetting it was ordered over a month ago and should've been done weeks ago. But people make mistakes, and the milks been spilt I guess.. moving on.

As I have progressed I have been on and off of Zelboraf since the 23rd. Due do different Dr's opinions. But as of the 2nd, I'm off completely, for now. For two reasons, "Zelboraf and radiation do not mix well together. There has been some bad interactions seen at sites irradiated in patients taking the medication. Ideally a patient should stop at least 5 days prior to radiation. And... patients who take a break from the drug sometimes regain response to the medication. This has been seen and is now published."

So here's the plan.

It's unlikely, but should all the stars align in my favor, my PET would show complete clarity of the body, except for the node, indicating there's some connection between the two, maybe the node is "seeding" my brain. They surgically remove or SRS the node, and tell me my head is SRSable again, and they do that, rather than WBR. They're all taken care of, never to return and I live a long life, learning so much from this experience, and helping others along the way until this beast is tamed. Which seems is just around the corner, if we could just hold on a little longer...

The more "realistic" plan and near to last option that's been discussed and I'm hoping for: 1. Keep off zelboraf. 2. If scans aren't too bad, get SRS, as WBR might change things. 3. After radiation, wait a week, then start zelboraf for a week. 4. Begin IL2 the next day. I would like this option, IL2 was the first thing I did and although it didn't cure me, I tolerated it well (14 bags and 9 bags) and although the dozens in my lungs and nodule on my chest progressed.. the good sized tumor in my liver just vanished without a trace the cluster of mass on my back softened for awhile. I guess I'm just excited about this, because it's another option.

If scans look bad. Or I make it through the IL2 with no benefit. Traditional Chemo is an option and something I have never tried. Most likely Temodar. Maybe Temodar and Zelboraf together..

And maybe, if I could buy a little time, maybe I could get on one of those "Compassionate Use Trials". If one shows up. One of those MEK inhibitors or AntiPD1 things I keep hearing about. I'm hoping something's gotta eventually work right?
 

Thanks for hearing me out. Any insight or opinions? Encouraging relatable stories?

Sorry If I've missed out on keeping up with some of you, there's so many people on here, and if you miss a day or two, the board just flies by.

-Kevin

 

I've been watching the Olympics lately, jealous and envying the health, energy, and strength of all these athletes. But got to thinking, in a way, we're just as strong and talented as any of these athletes, if not more.. And were a team too. Helping each other fight, not for a gold, but for life. A relentless mental, physical and emotional struggle on a whole nother level. We're basically Olympians.

I hope to post decent scan results this week and have a "set plan". Talk to you soon.

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deardad's picture
Replies 14
Last reply 8/6/2012 - 7:26pm

Sorry no news is good news at the moment.

I am loosing my dear dad, he can nearly no longer walk and his right arm is now going numb.

The damm flu has robbed him of sleep for 4 nights and taking away his final quality of life.

I feel ripped off and desperately sad.

I hate melanoma.

Nahmi from Melbourne

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LynnLuc's picture
Replies 2
Last reply 8/6/2012 - 6:55pm
Replies by: Webbie73

http://www.bethesdaskincare.com/

The Melanie Policy - free bar of Bethesda Sunscreen Soap to Cancer Patients - from Bethesda Skincare

They also have a FB page

https://www.facebook.com/BethesdaSkincare

I wrote the guy and requested it ( a friend sent me her response letter) and he responded to mine as well and asked me to spread the word. Another girl on FB got hers and she says she loves it.

The fella said because I am fair skinned I should remember to still wear sunscreen...so he seems like a wise fella!!

Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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deardad's picture
Replies 5
Last reply 8/6/2012 - 6:14pm

Does anyone think that 8mg of Dexametheisone is too low for someone with brain mets with paralysis?

Do you think we can increase this dose? Does anyone know what are the negatives of doing so are?

The onc said it might help, but didn't recommend it? I don't get that....and in the heat of the conversation we came out not knowing whether it was an option or not...he just didn't recommend it.

We realise dad has only a short time but is there anything that can help or has helped your loved one with brain mets before they passed?

Dad's appetite was great a week ago now its a battle for him to eat.....I think that's more about loosing his sense of taste.

We are caring for him at home, he is still lucid and his old self personality wise but as I posted earlier on he is now in a wheelchair, experiencing mild blurred vision and dizziness. He slips in and out of nodding off, but when stimulated can concentrate and engage in conversation for over an hour.

What a horrid, vicious cancer......

Nahmi from Melbourne

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chalknpens's picture
Replies 4
Last reply 8/6/2012 - 8:57am
Replies by: chalknpens, Janner, hbecker, Anonymous

I had the bone scan done last week, and met with the orthopedist this week to hear the results. While he found evidence of an old fracture (which might correlate with the beginning of the pain a few years ago in my lower right rib) he saw no indication that the melanoma had spread to my bones. That was very good news, and reassuring.

He is still, though, suggesting that I enlist an oncologist to manage my melanoma treatments from this point on. My dilemma is whether to go in to Boston to Dana Farber, or to go to my local hospital and find an oncologist there.

I feel a bit foolish going in to Boston, with what might be no reason to look for an oncologist. The dermatologist told me a few weeks ago that this was 'just superficial' stage 1 melanoma. But the orthopedist is looking at a larger picture, and further ahead, and suggesting that an oncologist would be the right doctor to help me make decisions when or if more melanoma is discovered.

This is deja-vu, reminding me of receiving the diagnosis of relapsing remitting multiple sclerosis five years ago. I agreed to the daily self-injection for treatment, even though I had not had recurring symptoms but always different symptoms. I was advised that the injections were designed to 'slow the progression' of MS, not treat any symptoms that came along. The belief was that by reducing the number of relapses, it would slow the progression.

New research is out now that denies that - even though the injections reduce the number of relapses, it does not slow the progression overall. I had been very depressed by the whole MS treatment ambiguity, and had stopped the injections on my own last year, but too late to save my careeer, as I'd been encouraged to choose 'quality of life' and retire earlier than I'd planned. I did retire, but on a smaller pension than I'd planned. Once I retired, i stopped the  injections and immediately felt better for a few months ... until this May when i was diagnosed with melanoma and other skin cancers, and the surgeries began. 'Quality of life' is different than i'd expected ... we spend most of our time and too much of our money driving to skin surgeries week after week.

I've already begun questioning the wisdom of allowing the surgeries, which leave large lines of sutures, to begin, if it is 'only superficial and stage 1.'

There are no do-overs in life, much as i wish there were.

But the bone scan showed no bone cancer.

I am not perfect, but I am enough.

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I'm still reeling from results I received late yesterday. I'm a 47 year old female who sees a Dermatologist twice a year for prevention. I had a trauma several months back and a thoracic x-ray showed what they thought was fluid. Well long story short it was not. I'm reaching out on any suggestions, recommendations that anyone may have. Thank you.

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Ali's picture
Replies 29
Last reply 8/5/2012 - 6:29pm

I have opened this site a dozen times in the last week, thinking I would share, but found it too difficult.  It is no fun reading bad news, and it is not fun spreading it.

I was diagnosed stage IV in January.  We had a scan last October (three months before) that was clean.  By January there were about a dozen subcutaneous lesions, two spots in the liver, and three in the bones.  We radiated 2 of the bone lesions immediately (one time high dose radiation) and started high dose IL-2 the next week.  The first scan looked great, many subqs gone and bone and liver improving.  The second showed improvements in bone and liver, many subqs gone, but new ones popped up.  We did the last dose of IL-2.  It again shrank many subqs (I could feel them melt as I was in the hospital, very cool).  We waited a month to scan.  I really wanted to have all trials available in deciding my next step.

The scans last week showed the liver and bone mets improved (they weren't lighting up at all on the PET), all the old subqs gone, but new ones (lots of them) popping up.  No organ involvement except the brain.  And major involvement there.  25 small brain mets.  Have you ever heard of that?  Popping up since April?  It seems pretty extreme.

So.  That pretty much kicks me out of trials.  Surgery is not an option.  Can't radiate individual mets yet, as they are not big enough.  Could do whole brain radiation, but mostly we are just hoping that we can get a systemic response out of IPI, as I had a good immune response from the IL-2.

Started IPI Wed., and also Temodar.  Scan again in 6 weeks and will see if any of the tumors get big enough to radiate (at the rate they grow under my skin, I'm thinking that won't be too hard).

I hate this disease. 

But I love that we options now that we didn't have a couple of years ago.  I love that melanoma is getting so much attention in the oncology world and that the things that are coming out are actually working. 

Thanks for all the support I find from this bulletin board!  Keep up the good fights!

ali

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Kellie-T's picture
Replies 7
Last reply 8/5/2012 - 2:47pm

I'm going to start taking the 8 pills a day and would like to hear what side effects those taking this drug have experienced. If you aren't experiencing severe side effects I would like to hear from you too.

Life is not by accident. Make every minute count.

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Vernon123's picture
Replies 1
Last reply 8/5/2012 - 2:46pm
Replies by: DonW

Hi. My daughter (14 years old) was diagnosed with superfiscial melanoma.
Breslow 1.3
No ulceration
Clear margins
Clark level 4
Mitosis 4
No satelites

I tink I understand that the next crucial ting know is to determine if it has spread to the lymph nodes right? How likely is that to happen considering depths and the clear margins? Is that the worst case scenario? If so then what is next? Chemoterapi? Hard to even think such a thought.

Would be glad to hear if some of you could light me up a bit on this field.

Regards Jan

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Replies by: ramannjr, Swanee

In April 2006, I found a black mole on my right ankle.   After having it punch biopsied by my dermatologist and looked at by pathologist, it
was determined it was 1.4 mm melanoma.   I had WLE done and no chemo/immunotherapy.    I remained fine with no new moles or anything
unusual until April this year.    I had a marble sized raised bump on my upper right thigh.    After months of testing, I found out last
week that it is a melanoma from the original melanoma.   They had to send it to the Mayo clinic to confirm with an expert.   Last Thursday,
I met with a surgical oncologist and oncologist.   I had surgery on Friday, another WLE and SLN dissection.    It turns out that there
were no traces of melanoma in the WLE site, but there are a couple of microscopic traces of melanoma (I believe 2 and they are less than 0.4
mm).   The oncologist on Thursday, said best case scenario (no melanoma in lymph nodes, all WLE site is clear and PET scan is clear),
I would have to do weekly Interferon shots once a week for a year and be PET scanned every 3 months.   My PET scan is scheduled for this
Tuesday.   I'm hoping and praying it has not spread beyond the lymph nodes in my right groin.    The surgeon already is recommending a
lymphendectomy of the right groin area, but is awaiting the PET scan to determine if surgery is required anywhere else.    I meet with the
oncologist to go over everything next Thursday and come up with a plan.   Do you have any idea what I might expect to be done?   I'm
very scared right now.  I'm 38 yrs old, married happily with an 8 month old son.   I'm hoping I can get through this.   Is there a
chance for a cure in my situation you think?   The surgeon told me 24% 5-yr survival rate, which has really scared me.   That was a general stage IV number? 

I feel okay now and I'm healthy, do you think I have many years left?

Does anyone know of a good oncologist in the St. Louis area that specializes in

melanomas?   I'm currently working with Dr. Ryan Neff on the surgical side and

Dr. Hsiao O. Hu on the treatment side.    I'm mainly going with them based on insurance tiering. 

Thanks,

Roger

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deardad's picture
Replies 5
Last reply 8/5/2012 - 11:48am
Replies by: Anonymous, Jeff's Mom, saddaughter, deardad

My dad is now in a wheel chair, he has no headaches buts needs mum to carry his weight to bathroom etc. He'a had this shocking flu that robs him of sleep at night and has for the last week. He's so tired and nods off during the day. Its so hard because I know he is dying and it's so hard to know whether it's the cancer or lack of sleep from coughing all night that's making him tired.

We have booked in to see the neurosurgen on the the 16th of August for SRS. He looked at dad's MRI and wants to talk to him about SRS to try to prevent further paralysis. Personally I'm not confident he'll make it to that appointment the way things have declined so much in a week.

Sorry to give you all the this blow by blow description.

Palliative care have been fairly hopeless in getting drugs to us and mum is so determined he will die at home under her care.

I called a GP in today to see if dad could have some sleeping tablets and he recommended half dose (he's never had one before).

My bro in law said not to give it to him with bronchitis, he needs to cough.

I'm not sure what to do now...take the pill or not? He's slowing down....does anyone know what I should expect roughly from now on?

Can't believe I'm now in here in this dark place that I always put away in the future.

Thanks everyone

Nahmi from Melbourne

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Gene_S's picture
Replies 1
Last reply 8/5/2012 - 11:33am
Replies by: Linny

Anyone know how Yoopergirl is doing?  I believe her last post was in July.

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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dawn.spiering's picture
Replies 3
Last reply 8/5/2012 - 6:37am
Replies by: natasha, o2bcheri, Swanee

Hi my name is Dawn. I have just been diagnosed with melanoma . In 2007 I had surgery for uterine leiomyosarcoma and there was no adjuvent treatment. In 2008 I noticed a small lump in my neck and applied for insurance coverage and denied because of previous diagnoses, for the next three years I've been fighting for state insurance coverage and after quitting my job and allowing me and my disabled son to become homeless. I finally recieved medi-cal. The lump is now huge about 5 by 5 by 4 cm and is pressing on the caratoid artery, which means alot of pain. I am waiting on insurance approval for surgery which is scary sense Molina is fighting on paying any test the doctors need to help me. I think they are hoping I croak before approving surgery :(. So thats my history.

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Jennholbert's picture
Replies 8
Last reply 8/5/2012 - 5:27am
Replies by: LynnLuc, natasha, Jennholbert, Anonymous, jag, AngelaM

The report looks good with one little exception. I will see the oncologist in two weeks for rond two.

Here are the results...
Malignant Melanoma
Type: superficial spreading malignant melanoma
Clark's Level: II
Thickness: breslow of .26 mm
No ulceration
Dermal Mitotic Rate: 0 (this really shocked me!)
Lymphomas ulnar space invasion : none
Precursor Nevus: present
Biopsy Margins: the lesion extends close to at least one radial margin: wider margins are indicated

It appears I had a partial regression.

We found another very little spot on the palm of my hand that will need to be checked out.

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