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.

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My boyfriend has just recently been diagnosed with melanoma. He hasn't actually been staged because we haven;t gotten the PET scan to see if it has spread but by the depth of the tumor from biposy the pathologist was fairly certian. From what they took it was 3mm deep but the tumor went deeper. This is scary. I have read alot and know how bad it might be. I was trying to keep this from him. He is sort of a hot head and I didn't want him to freak out and do drugs and drink like crazy. He is an ex-addict and an alcholic. Well lately he has been growing more and more impatiant. We haven;t gotten anymore treatment other than a biopsy because he has no insurance we have applied for PCIP and gotten approved but coverage doesn't start till febuary 1st. So he got an appointment with the county hospital through American Cancer Sociery. He thought he would get more answers but that isn't what happened. They told him what he already knew. This angered him which he has already been getting angrier and angerier. Then the other night awoke with terrible night sweats. This freaked him out so of course naturally he googled it. This told him how bad it probably is. The thing I have been holding from him in hopes that I can keep him happy for that much longer. He became very very angry, He says hurtful things to me and starts fights with others. I just don't know what to do. I feel so alone. I want to be there for him. I love him more than I ever thought I could love someone but being with someone that seemingly hates you and everything you do is really hard. I can't talk to my friends because our relationship hasn't been perfect and they just don't understand. They either say that its because of all the other things he does or that what we have just isn't love, people don't treat people they love that way. I just wanna yell at them. HE IS ANGRY BECAUSE HE IS PROBABLY DYING!!!!! HE TAKES IT OUT ON ME BECAUSE HE IS CLOSEST TO ME!!!! This is something I understand. I just don't know how to not involve my own emotions, To not get upset when he is angry at me. I just need someone impartial to talk to. Or advice.

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NancyGM's picture
Replies 5
Last reply 1/23/2013 - 6:14pm
Replies by: lou2, King, scots, Josh, aldakota22

 I was treated in 2007 with 10 rounds of Temodar and had a full, durable response. I feel very grateful to all those who answered my questions here and my heart goes out to those who are struggling with active disease. I have been lucky beyond measure, thus far. Hope does increase as time goes by and one even finds onesself making plans for the future...

Though nothing can dampen my joy over my long term NED status, I wanted to include some of my struggles with keeping my medical coverage as a warning to others who may face similar obstacles. At 3 years on Social Security disability ( which gave me medicaid/ medicare coverage since I had no insurance), I was sent re-determination papers. I was turned down based on medical improvement. I appealed this decision based on the fact that I had some lingering issues that made full time work difficult and the fact that one needs to be continuously monitored at stage IV of this disease. Though I had letters from my oncologist, former employer, all my records, etc and a lawyer, I lost my case after what stretched into a 2 year ordeal. Now, Social Security wants me to pay back two years worth of benefits. I have filled out a waiver form about this and am waiting on a decision.

So, after loosing my only medical coverage, I decided to leave Montana and that I would move to Oregon,( where I had lived 15 years ago) because I understood that low to moderate income Oregonians were entitled to universal health care under the Oregon Health Plan. I discovered, after quite a process, this is no longer the case and very few single adults are eligible for medicaid.

Then, I returned to Montana where I decided to re-enroll as a University student so I could buy the health insurance offered to students ( which had recently increased 120% for those over 40). I come to find out that Blue Cross/Blue shield, the University provider refuses to cover any bills for a pre-existing condition if there has been a gap in coverage since the last  coverage (I had lost the the medicaid, medicare  less than 4 months ago).

I hope no one else runs into the obstacles I have and I wish everyone here the right to compassionate, fair medical coverage. However, I mostly wish everyone here a glimmer of hope...Some of us, for some reason, are still here after 5 years of being declared NED of stage IV melanoma. Though, some well meaning folks who are not well versed on this disease might think this means one is cured,we know all too well about the dark cloud of our prognosis. However, one may surprise oneself just how much living one can squeeze in even under such conditions of limbo. I wish everyone here the very best and I send my deepest sympathies to those who have lost loved ones.

NancyGM

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Just diagnosed as shown above with a mitotic rate of 10 per sq ml.  Since I have no idea what this means I am very concerned.  Can anyone help with this?

Thanks

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/23/2013 - 12:20pm
Replies by: Janner, Anonymous, POW

Can someone please help what this means. I am so terrified of the results?  I had the wide excision

but they only took 5mm and am worried they did not go deep enough eithher.  The wle came back ok,

but should i go further and get 9mm??  Is this actually cancer yet?

 

PATIENT HISTORY: (original diagnosis)
Specimen from the (part A) skin
of back, right low, (part B) skin of axilla. Initial pathologic impression is
(part A) Clark's (dysplastic) nevus, compound type, inflamed, unusual with
features of partial regression. Margins negative for lesion.

_______________________________________________________________
FINAL DIAGNOSIS: )after re-review)
1. SKIN, BACK, EXCISION (OSS, S-12-13576 A, 11/02/2012,
MALIGNANT MELANOMA IN-SITU, ARISING IN ASSOCIATION WITH A COMPOUND MELANOCYTIC
NEVUS WITH ARCHITECTURAL DISORDER AND MODERATE TO FOCALLY SEVERE CYTOLOGIC
ATYPIA (aka DYSPLASTIC / CLARK'S NEVUS) (See comment).

COMMENT:
1. Examination of multiple levels reveals a growth of enlarged atypical
melanocytes arranged as single units and as confluent irregular nests at the
dermoepidermal junction and above it. The atypical melanocytes have
pleomorphic and hyperchromatic nuclei and some of them have prominent
nucleoli. Some melanocytes have ample cytoplasm and coarse dendrites. The
atypical junctional melanocytes merge with a second population of melanocytes
arranged as nests at the dermoepidermal junction and mainly as single units in
the dermis. The dermal melanocytes tend to mature with descent, and no
melanoma can be appreciated in the dermis. Interpretation of
immunohistochemical stains (S100, Melan-A, HMB45, and tyrosinase) confirm this
impression. A Ki-67 does not reveal an increase in the proliferative index of
the dermal melanocytes. Since this case was not grossed at our institution, we
hesitate to comment on the final margin status; however, the slide section
margins appear free of melanoma in-situ.

Overall, this is a challenging case, but the amount of confluence and presence
of upward epidermal spread is sufficient for an outright diagnosis of an early
evolving melanoma in-situ. There is a second population of melanocytes in
close approximation to this melanoma that is best categorized as a nevus.
Though slide section margins appear to be free, complete re-excision to ensure
removal and prevent recurrence and/or progression of this lesion is
recommended. This case was also presented at our daily quality assurance
conference and agrees with the interpretation above.

 

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Hi Everybody,

My name is Maggie,

My brother had half his lung removed in November 2 days after christmas he collapsed at work. They thought it was a stroke once they got him to the hospital and did the test they found his melanoma was back 3 tumors on the brain 2 in the chest cavity and one in the neck area all in a month. Merry Christmas to our family right? Yesterday he turned 48 and just finished his 3 weeks of radiation, they are giving him a few weeks off before they start the chemo, he is a very private man and I don't know what to say or do for him except to let him Know I am here for him if he needs me. Everything happened so fast we really did not have anytime to explore any alternitive options so I hope the radiation and chemo are the right avenues to take. This is all new to me and my family and my parents and brother are just listening to what the doctors tell us to do. He is so young I just want to know are we doing the right thing should he go thru with the chemo when it comes time? I would appreciate feed back from anyone who has been dealing with this longer then us. Like I said before we are very new to this. Thanks! 

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POW's picture
Replies 13
Last reply 1/23/2013 - 5:22am

I regret to inform you that my brother entered hospice this week.

Actually, he has been an in-home hospice patient since this all started 6 months ago. But he has become so weak over the last 3 weeks that he can't walk, so he was admitted as an in-patient. Thankfully, he is not in pain. He has some minor pain in his back from a tumor near his kidney, but that's about it.  With his brain tumors, he has periods of mental clarity and mental confusion and his speech aphasia waxes and wanes, being especially bad when he is tired or under stress. He still hasn't given up the fight-- he says that he intends to regain his strength in hospice so he can go home again. But the doctors say that would be a medical miracle. On the other hand, part of him understands the reality of his prognosis, which is why he sold his car and (finally!) made out a will last week. 

When he was first diagnosed in June, he had tumors all over his body including his brain. We were told that he had 4-8 weeks to live. Due to his tremendous will and the availability of Zelboraf and Cyberknife, he had 6 months of a good quality of life. That gave my brother, as well as the rest of the family, time to emotionally adjust to this devestating diagnosis, to make legal and financial plans, and to enjoy some good times together. We will be forever grateful for that.

I want to thank all of you for your help, advice, support, and encouragement over these months. Much as I love my family and friends, I didn't want to overburden them with my problems and my concerns. But you folks understnad the all-consuming nature of this disease and our desperate efforts to "beat the beast". Thank you for being here.

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awillett1991's picture
Replies 23
Last reply 1/23/2013 - 5:14am

I just ran across this. Linda, you were such an inspiration. You will be missed. Praying for peace for your family at this time.

Amy

LINDA P. HALEY
July 9, 1953 - January 18, 2013
ANDERSON - Linda Lee Protas Haley, age 59, of 710 Timberlake Road, Anderson, SC, passed away on Friday, January 18, 2013 at the Rainey Hospice House.
Born in Chester, PA, she was the daughter of the late Hillman Protas and the late Judith Barbour Protas. She received a Master's Degree in Education and retired as a public school teacher. She was an avid quilter being a member of the Prickly Fingers Quilters Guild. Linda was active with many online melanoma support groups and locally with the AnMed Cancer Support Group, "Surviving The Journey".
She is survived by her loving husband of 37 years, Merritt Samuel "Sam" Haley; one son, Brandon P. Haley and his wife Racheal of Birmingham, AL; a brother, Russell Protas of Delaware; one granddaughter, Savannah "Punkin" Haley; and a number of nieces and nephews.
The family will be at the residence and will receive friends at The McDougald Funeral Home on Sunday, January 20, 2013, from 2:00 pm until 3:00 pm. The funeral service will follow in the Chapel of the funeral home at 3:30 pm with Dr. Peter A. Cohen and Reverend Dwight Greene officiating.
In lieu of flowers, memorials may be made to Melanoma Research Foundation, PO Box 759329, Baltimore, MD 21275.
A message of condolence may be sent by visiting www.mcdougaldfuneralhome.com
THE MC DOUGALD FUNERAL HOME and CREMATION SERVICES, Anderson, SC

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mrsmarilyn's picture
Replies 1
Last reply 1/22/2013 - 11:29am
Replies by: POW

My brother received his results from his BRAF testing out of USF - and it states "braf K - "the wild type".  How can he be both K and the wild type.  I thought K was a mutated gene - and wild is not mutated.  Right now he is on yervoy - but needs to know his options - just in case yervoy fails.

Thanks very much-

MrsMarilyn

Sister of Gary'

(Stage IV for 11 years now!)

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islandbreeze's picture
Replies 1
Last reply 1/22/2013 - 7:39am
Replies by: buffcody

I got back home a few days ago and going through the public hospital system is a long,tedious process, I can not go private as I ve no funds or I wouldve found out long ago what this melanoma doing in my body. March 21st I am scheduled for surgery and the morning of surgery is when the scan is done, based on whats seen there would determine the extent of surgery and if they see nothing,I am being advised on getting a PET scan in the USA, the Bahamas doesnt have this available. This scan what I will be getting is injection of blue dye unto my whole lymphatic system, as the lesion was on my loin[trunk] and the cells could be anywhere.

So you know how cancer head goes, Im thinking this process as gone on long enough, I know nothing more then I did after I received my pathology report,the cells could have spread. well I cant worry no more,Ive placed this in God's hands, I cant cope with all the what ifs,ands and buts anymore.I dont even know if I will go back to Nassau for the scan.It was hard enough to come up with a down payment for the scan alone,and if I were told I need chemo,thats another concern,where would the money come for that? I am poor, I am an invalid and need assistance,and now the assistance I was getting from social services ended in Dec 2012.

Maybe I'll lose enough weight to be able to work, as it is osteoarthritis as me limited to almost everything in my life.

Time is a versatile performer. It flies, marches on, heals all wounds, runs out, longer then rope and will tell.

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lilred75's picture
Replies 13
Last reply 1/22/2013 - 12:29am

Wow, it has been FOREVER since I was last here! I recognize some of the names, so maybe there are still a few who remember me ;). I like to visit here now and then, and check to see how people are doing. I like to give hope to those who are currently wondering where their life goes from a newly stage IV diagnosis, and let "old" members know I am still alive and kicking.

I am heading into my 7th year as a stage IV melanoma survivor...HOLY CRAP! How did THAT happen??? Even better, I have been NED since Fall 2007. Yep, nothing but PET and CT scans to monitor since October 2007. It still blows my mind to realize how many years it has been since hearing those horrible words in my oncologists office. I have been one of the lucky ones. Since becoming NED, I have had two beautiful daughters (ages 2 and 6 months now), and can not complain at how good life has treated me. I have watched several friends pass away, or get diagnosed with different cancers and other unexpected conditions, and it just makes me value the days I have had even more. I am scared to death about what the future holds, but every day I have had with my daughters, is a day I could never have imagined in my wildest dreams.

If all continues to go well, this year I will turn 38 and celebrate with a husband who I didn't meet until I was already diagnosed with stage III, and with two amazing toddlers who I never thought would be possible. I don't know why I am a lucky one, but I try to live each day for every single person who hasn't been so fortunate.

A lot of crap happens to really good people. But I am proof that miracles do happen, so never give up hope, until the very end. You never know how good life might get, nomatter how many days you have to live it.

Alison (Lilred75) 

Miracles can happen to those who believe in them.

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Rocco's picture
Replies 4
Last reply 1/21/2013 - 11:59pm
Replies by: King, awillett1991, Rocco

Howdy,

It's been a while - thought I'd update folks.  I'm now on a 6 month scanning schedule.  I had scans (MRI/CT) this week, with follow-up appt with my Onc.  MRI = clean, no issues.  Still NED, but the CT showed inflammed/enlarged thyroid as a new issue.  My Onc took additional labs to check thyroid levels.  Results showed that they were way off, so off to the Endocriniologist.

I was blessed to get an appointment the very next morning with the Endo that I had worked with during my ipi side effect/ eye-related issues.  At that time my eyes were reacting as if I had Graves disease, but there were no major issues with my thyroid.  This time the Endo is almost certain I have Graves disease /hyperthyroidism.  Thankfully my eyes don't seem to be involved at this time - and I'm praying it stays that way.  I'm now on meds to try and right things. 

Over the past couple months I've actually had several of the symptoms of Graves/hyperthyroidism, but never looked at them as a whole, always writing each off to something else.  What can I say, I let my guard down since my scans had been clean for a few years now.

So, I'm back in patient mode for a bit, jotting down each little thing to report back to my Endo and Onc. So long as the meds work and my eyes don't get involved, the plan is to stay on the meds for 2 years, testing along the way until it goes into remission (Endo's word not mine).

So now cancer issues for now, just a crappy thyroid!

Hang in there everybody!

-Rocco, IV since 2005, Ipi responder.

Luke 1:37

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Snickers60's picture
Replies 14
Last reply 1/21/2013 - 12:22pm

Yes !!!!'! Yeah !!! Amen !!! Glory be ! Yippee !!!!
Just saw Dr. B and everything was great for "my wonderful Wayne " :-)))

Noooo melanoma in MRI of Brain or PET Scan and all
Blood work looked great !!!
Whew !!!!!!! Alright !!!! Exhale !!!!!

All praise to God we give !!!

Warrior Wayne and Nancy - dancing a JIG !!!! -)))
Dance with us ????? :-)))

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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DeniseK's picture
Replies 17
Last reply 1/21/2013 - 5:46am

Hello everyone,
Wow, so I've been through a lot the last couple weeks. I was on a temporary insurance for low income which only lasted 2 months. My doctor tried to get me zelboraf but the state denied coverage so I was looking into clinical trials. I had an MRI of my brain on Monday and was told Tuesday I have a 12mm x12mm met in the right frontal area, I suspected this due to having some pretty bad headaches lately, so this now excludes me from the trial. My doctor wants me to get either gamma knife or external beam radiation followed ny WBR, but not sure what I'm gonna do, I meet with the radiologist next week to discuss options. I applied for social security disability last week and was approved in about 4 days, thankfully this gives me medi cal insurance and I can now get the zelboraf and radiation treatments. I'm on a steroid Dexamethasone 4mg to help reduce swelling in my brain, I'm also on a time release morphine sulfate 20mg capsule to help with pain in my head, chest, back, and leg. I should be starting z next week and radiation the following week. I wanted to ask if you have had brain mets and radiation, should I get wbr after the gamma knife? I noticed some people don't do wbr right away. I'm thinking if I only have the one brain met I should just zap that and wait and see what happens with the z.
Right now I'm so thankful I finally will have insurance to get the help I need. If your stage 4 its pretty fast at disability, I'll get my first check january 1st and the medi cal was immediate. Its not medicaid its state insurance for first 2 years. I know there's been some questions about the process so hopefully this helps someone.
Can't believe Christmas is 3 days away! Merry Christmas everyone!! :)
Courage, Strength, and Hope for us all!
Denise

Cancer Cannot cripple love, silence courage, destroy friendship, shatter hope or conquer the spirit.

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awillett1991's picture
Replies 27
Last reply 1/20/2013 - 8:58pm

Scans came back showing nothing new, and nothing grew!! I continue to have thyroid lighting up incl some lymphatic tissue and swelling however TSH and Free T4 are back to normal, probably from steroids. It was biopsied 3 yrs ago, did a full endocrinology workup in Oct/Nov 12 and my doc remains unconcerned - says its Ipi induced. My 4mm brain met is now "tiny", the other went from 6 or 7 mm, depending on which report you read, to 5x3. Also there was no edema, and rad onc said I had it in my spinal cord due to "questionable leptomenengial enhancement over left frontal convexity". He discussed WBR, but we went SRS instead. Now this area is "less prominent". Scary.

The mass inside my heart had really taken off when I stopped Zel - from 7x11 mm on Sept 29 to 28x41x41mm with decreased heart function in 47 days off Zel. Now function is near normal with mass reduced to 19x30x34.

I have been back on Zel 63 days, actually taking the drug 48 of those days after a 48 day break to start Ipi. Unfortunately there is no way to ever tell if the Ipi worked according to my Dr because of me taking the Zel. Something is working though and for that we are very, very, grateful!!!

I created a Zel timeline w pie charts for my doc to see how much drug I'd taken, and the breaks I'd had. I've started an intermittent schedule of two weeks on/one week off to try to reduce side effects and get me off prednisone. And maybe it will prolong the response. I've been on pred since dec 14 when I was hospitalized for liver toxicity. ALP was 6x normal. Right now ALP is fine, but AST, ALT and Bili are all up and climbing so this is my one week off. Hopefully what held true in those poor little melanoma mice will work for us too. Squeak squeak.

Zel side effects still suck. Period. But I have a lot more energy, overall I feel great, and I'm alive!!!

I'm so thankful for everyone here, their positive stories and encouragement, and we are thanking God for this good news after a rough and scary few months. I have no regrets. Many prayers for continued good news for us all.

Amy

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FitzChieco's picture
Replies 8
Last reply 1/20/2013 - 6:52pm

Hi,  This site appears to be just we are looking for.  My brother has recently been diagnosed IIc and we have to make the decision about watch and wait or try the peg interferon for 5 years.  My brother, Kevin, has some congitive issues from birth that affect his balance and his short-term memory.  He does fine when he is able to follow a routine but otherwise, he gets confused.  He came through the surgery well and nodes were clear, hence the IIc.  But his initial path report was pretty bad (Clark IV, 5.4 mil and ulcerated.)

My brothers and I have to help Kevin make this decision.  We have several questions.  We are concerned about the side affects completely interfering with his routine and therefore negatively impacting his quality of life.  Questions like:

1.  We have read about memory loss and a sense of confusion while on interferon.  Has anyone experienced this and how bad is it?  does is go away (does full memory return) when treatments are stopped.

2.  Fatigue.  Kevin is a runner.  He is 55 and in great health.  His greatest joy is to run several miles a day.  Is there any way that he would be able to continue with this type of activity?

3.  Results.  Kevin's doctors are indicating that there is some evidence that this treatment has been effective in 15 - 20% of IIc patients.  What do you folks think about the reality of peg interfuron making a difference in the long run.  Doctors have said that the surgery went well and there is a 50/50 chance that it could rear its' ugly head again or never be seen again.

 

I am sure that these questions have been asked and answered before, but this is all new to us and we really could use some insight from those who have had similar experiences.

Thanks so much for any information.

Deb

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