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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Anonymous's picture
Anonymous
Replies 7
Last reply 6/21/2011 - 4:10pm

Hello all!  A relative of mine was just diagnosed with metastatic melanoma and our family is trying to put together a care package to send to her.  I was going to fill it with Eucerin lotion (sensative skin), chap stick, mini travel games like scrabble, magazines, preggo queasy lollipops, peppermint tea (for nausea), lemon drop candies, soft toothbrush, sensative skin baby wipes, germ-x wipes....what else could I put in there?  They start IL-2 treatments next week and being so far away I really want to let her know we are thinking of her...I also plan to send up mini care packages for the next treatments...I want to show continued support...is there anything else that you could help me add?  Thanks so much...and any advice would be greatly appreciated!

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ValinMtl's picture
Replies 13
Last reply 6/19/2011 - 2:17am

I'm planning (as in hoping) to find a trial that would include IL-2.  Came across a comment recently that said, IL-2 is not a good option if compromised from the ILP, LND and lymphedema. The toxicity could pool there and necessitate amputation, or could cause death.  I have not had an ILP because lymphedema was bad in my right leg, exactly the location where my sub-qs (growing daily) are located.  Has anybody heard this, any thoughts would be much appreciated.  Val, stage IV, failed ipi, looking for new trial

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KevinM's picture
Replies 6
Last reply 6/18/2011 - 6:49pm

Jane,

Great video!! So happy for you....you are a true inspiration! I am hoping to jump with my son later this summer!

http://www.wmtw.com/news/28269352/detail.html

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Hi all,

I'm from BC Canada. I'm looking for others in my area. I'm also looking for all the latest up-to-date info on Melanoma and treatments etc. My biggest concern is that I'm not getting the closest follow-up that I may need. I was diagnosed with Melanoma in March of this year. It was on my right calf. I had a flat mole there that was about 5-6 mm - not round but not too wierd looking. I noticed that I had to be more careful shaving my legs last December as the mole was more raised. Then by the end of December I was catching the razor on it. I didn't think too much about it until January, when a skin coloured "tumor" started to grow on one half of the mole. I knew I had to have it looked at but was "too busy." I finally had it looked at mid-February and my family physician removed it and 2 other fast growing moles. I didn't think anything more about it as my doc didn't seem too concerned. I got the "phone call" March 10th. It was a Nodular Melanoma Clark level IV and Breslow 2 mm Mitosis <2/mm. I had a wide excision and sentinel lymph node biopsy March 31. The surrounding tissues and lymph nodes were negative putting my staging at IIa. The other 2 moles were benign. I also had 3 Clark's nevi removed in May. My surgeon, who specializes in melanoma, wants to take more tissue from around the nevi removed from my back.

My concern is that I'm wondering if they should have been doing CT scans or anything else to make sure I didn't have anything else going on. I feel I'm a little of an oddity as my surgeon said usually older males have this type of melanoma on their scalp or shoulders from too much sun exposure. And everyone that knows me, knows that I don't go out in the sun much. Since I was pregnant with my 12 yr old daughter, I've been heat intolerant and always sit in the shade. I'm the one under the umbrella at my daughter's soccer games. And not when it's just raining either. My legs have really never tanned or even burned, but I'm fair haired (naturally that is), green eyed, have more than 50 moles (more like 50 per sq inch - lol), and burn rather than tan. I use 50 sun screen. But I also grew up in the era of no sun screen and playing outside in the sun all day when I was a child. Had plenty of very bad burns - but not on my legs. Go figure.

I would enjoy hearing from everyone and look forward to meeting more people in my position. I know I'm one of the lucky ones but also know I have a life-time of vigilence ahead of me.

Cheers,

Carolyn

Live life to the fullest. Laugh lots. Love deeply.

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Gene_S's picture
Replies 2
Last reply 6/19/2011 - 1:49am
Replies by: Anonymous

I know that many of my fellow online melanoma family members are running out of treatment options and I want to share the following email response that I received from a Yahoo forum group that I belong to.  His solution is NOT a ENDORSEMENT from me but just a possible lead for another treatment option.

--------------------------------- email below ------------------------

Date: Wednesday, January 5, 2011, 1:35 PM
Hi,  My wife had repeated melanoma outbreaks on the side of her face for about ten years, surgery each time finally resulted in disfigurement and partial paralysis. I ran across a doctor who cured himself of Stage IV melanoma eleven years ago. I wanted NO MORE surgery on her!  He now offers his treatment, not chemo, no medicare, but not expensive either. We went to him two years ago and she has been clear so far. A wonderful person, Dr. Cantrell is in practice in Brentwood TN. Website www.neoplas.org Check him out.   Bill

---------------------------------------------------------------------------------------------

Note, the best part is his "cure" rate for stage III and stage IV melanoma's... again NOT an ENDORSEMENT but just sharing some of my research info that may benefit my fellow online melanoma warriors! 

Best Wishes,

Gene

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

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CAdesiree's picture
Replies 7
Last reply 6/18/2011 - 6:06pm

i have posted a few times... first w questions, then the pathology for my initial biopsy.  but now, i am as scared as my first post. i already knew i wasnt happy w my derm.  i am seeking a second opinion w a oncologist, that appt is the 23rd.  so today i had stitches removed from my reconstruction (after MOHS) at the original derm's office.  i also picked up my records for the second opinion... and they have ALOT of incorrect info.

the first thing i noticed was the antibiotic.  the day the derm did MOHS (may 31st) he prescribed Cipro as my antibiotic, to be taken starting the morning of reconstruction (june 3rd).  my records say he prescribed Keflex.  i called the pharmacy they say usually keflex would be the more appropriate antibiotic, but call my derm.  the pharmacy also stated the original prescription was always for cipro, that i took.  i didnt call the derm... they already messed enough up.

but then i continued to check records... i had told the derm that lesion had scratched open a few times bc it was itching.  i told him i wasnt sure if he would consider that ulceration, he said no.  my pathology for biopsy, i think, says no ulceration.  but in my records it says ulcer marked on the picture of the body where my lesion was... confusing.

then, im listed as a non smoker... which today i agree with. but i smoked my last cigarette on may 30th, the day before the MOHS.  and the last time i spoke w derms office was june 3 for reconstruct... how did they know i actually quit? and i dont think that would have even bothered me if the other stuff was right... i probably would have assumed they just had faith in my quitting.

also, the records claim they gave me antibiotic ointment for wound care... i didnt.  i assume that went to one of the staff for their personal use.

after the physician asst at derms office removed stitches he wanted to biopsy more, i refused... will wait for second opinion dr.  but he also stated that he wasnt worried about the moles i pointed out that came up since my pregnancy w my daughter (3yrs ago) bc they were not dark enough.  said they are only concern if dark pigment.  but isnt it possible for melanoma to not always appear dark???

and after all this... im supposed to trust they really got it all??? has anyone ever heard of anything like this?

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Anonymous's picture
Anonymous
Replies 6
Last reply 6/18/2011 - 7:34am
Replies by: Lisa13, Drew N, Anonymous, Janis B., washoegal

my mum was diagnosed with melanoma at march.she had a mole at the midle of her back, she took it iff and it was melanome, great news!!!then she had an opperation to "clear" the region of the elanoma and sln at the axilllaries. there was found one lymph with micrometastasis at her left sln and then a full axillary disection was made.she is between iiia and iiib because she had a traumtic and not full ulcerations.the doctores told as that she has to do inerferon but after searchinh we found out that it has many side effects and a small acount of progressive.i am so scared and confuised!is theree anyone with the same expirience....i d like to hear some opions because is so hard to take a desition...

 

thaks alot and i wish to all of you luck and health..

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StevenK's picture
Replies 9
Last reply 9/3/2013 - 12:59am

I've arranged for all my records to be sent to the melanoma team at Emory. Thanks for the advise everyone on using a melanoma specialist. I hope I've selected a good one. Today I am somewhat calmer, but still very scared.

I've been reading all the stories that get posted here and am very moved. My heart goes out to everyone fighting this disease. I will share whatever bits of wisdom I manage to pick during my struggle. I hope and pray that new medical breakthroughs continue to be made.

Steve

 

 

 

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TracyLee's picture
Replies 14
Last reply 6/20/2011 - 8:37am

Hi y'all,

2nd Ipi transfusion today. Can't come a moment too soon. My neck is a landmine of lumpy nodes, and the left (good) side is now popping nodes too. I'm prayerful that this means Ipi is already kicking melanoma's butt!

This has been a rough week, 2 migraines this week. Can't tell if just "normal" migraines, which I haven't had at all since my surgery 2 months ago, or an Ipi side effect.

Anxious to move on and get this done!

I know several are getting treatments, scan results, etc. I pray for each of us to have nothing but good news and positive outcomes.

TracyLee

Never will I leave you, never will I forsake you. Hebrews 13:5 Cast all your anxiety on Him, because He cares. 1 Peter 5:7 Stage IV 5/16/11 Ipi - 4 rounds May - July 2011 BRAF expanded access trial 8/8/11

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NicOz's picture
Replies 14
Last reply 6/18/2011 - 5:52pm

I wasn’t going to worry about an update, but I know some others on BRAF inhibitors are interested in how others are responding, so here goes with my 8 week scan results (with a little prelude to further indicate how well the GSK2118436  has been working its magic)

I had scans done as part of the screening process back in April, and at the time I didn’t ask for the results as I didn’t want to know them. I knew it wasn’t good and decided that sweating the details was not going to improve my extended stay in Sydney and chose blissful ignorance- it was MUCH more blissful than even *I* expected... I never expected these scan results in a million years, and I’m a big believer in expecting the worst :P

In the 2 months between MRI’s, I somehow grew over 50 new brain mets, up to 12mm. And they weren’t the “fairy lights” I expected to see on the actual scan. They were like disco balls scattered throughout my brain- I now call them “popping candy”. So that first month of treatment was even more impressive than I originally thought after those 4 week results. ALL of the new ones gone, and 4 of the 5 considerably larger ones shrunk by approx 50%. (That was week 4)

Week 8 showed the following. The 5th and largest brain one (most critical, too- right next to motor area) has slowed and actually shrunk a little. The other 4 remain stable.

Extracranial results went as follows: Adrenal mass gone. One of liver lesions now indiscernable, other 2 larger ones have reduced in size. Axillary nodes have resolved. No new growth. Right butt cheek is still the same- poking it’s tongue out at me for telling mel to kiss my butt cheek for 3 years, I’d guess.

So, after 3 years since diagnosis, I’m finally “STABLE”. I’m happy with stable. Rapt, actually. I know everyone’s chasing NED, but I’ve never been one to go for the ostentatious types. I like the quiet achievers as part of my life, and I'm happy to date 'stable'.

Being fortunate enough to be here to celebrate my daughters 6th birthday, has been an amazing experience. (And being steroid free is an added bonus which I am very much enjoying!) At the moment, though, my thoughts are very much with Eric and Jill and others who are not as fortunate as I am at the moment.

Nic

Meh. Get on with it. Do not feed rabid monkeys. To fear is one thing. To let fear grab you by the tail and swing you around is another

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Ashykay's picture
Replies 9
Last reply 6/18/2011 - 9:07pm

Hi there. I am a family member of someone with a secondary melanoma, that
being my Mum. My Mum is 52 and was a "sun worshipper" here in Australia back in her day. Since
then, however, she has been extremely careful with her skin and had it
checked at regular intervals, with nothing ever picked up. After Easter this
year, my Mum experienced significant pain in her right leg as well as pins
and needles in this area. Her GP referred her for an MRI thinking it was a
pinched nerve in the back. They instead have found a 4cm x 4cm tumour at the
bottom of her spine. They believe this tumour to be sitting on a nerve,
hence the pain. Further, it has come back as a c-kit positive melanoma, and
they are unable to find the primary source (it is also not showing up in PET
scans). Further, they have discovered a small tumour at the top of her leg.
All other scans came back clear in other organs, as well as lymph nodes. The
testing has occurred over a period of approximately 3 - 4 weeks, fo which my
Mum is now concerned that doctors have "wasted precious time" in having more
and more tests and her being referred to about 8 doctors! Surgeons have also
passed her off as a no-go, though a 9 month recovery time without having
radiation probably wouldn't have been an option for her anyway.

She has started radiation on these tumours and we (and the doctors) are hopeful that this will
significantly decrease the zize of the largest tumour and eliminate the
smaller tumour. My Dad, family and I are now looking into what can be done
after radiation if the tumour is not entirely eradicated.

The doctors have raised the possibility also (and I suspect due to the absence of evidence of a primary site) that this could be a mucosal melanoma, and is "extremely rare" and not much known/not many options.

I was firstly wondering if anyone else has had a similar melanoma - my Mum's
seems to be extremely rare and I would love to hear from someone with a
similar experience. Secondly, I have heard of Gleevac and some other
important drugs and medical trials which are responding to c-kit positive
mutations of melanoma. We're looking into getting Mum tested for c-kit mutation as well as BRAF mutation. Is anyone able to provide information of someone contactable in Australia, the US, or anywhere really who is a leader in this area?

Many thanks for your help - much appreciated. Feeling a little desperate and needing to hear the voices of others at this time....

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debandmike's picture
Replies 7
Last reply 6/19/2011 - 11:10pm

It was April 18 when Mike started his first series of IL-2. All total for the two weeks he got 19 treatments (12 the first week and 7 the second week). We now are taking our next step to see if the IL-2 is doing its job. Tomorrow scans and then scan results on Tuesday, July 21st. Mike has been feeling well and has been back to work for three weeks. We are hoping and praying for the best of news.

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StevenK's picture
Replies 10
Last reply 6/19/2011 - 2:18pm

Got the call this morning. Melanoma. They excised it a few hours later and now the entire side of my face is bandaged up. The report doesn't say nodule melanoma, but it presented like that. A fast-growing mole out of nowhere. They don'y know the depth because doctor did a shave biopsy. He thought it was something else. Been about 5 months since it first appeared. Doctor says it was very small and a good chance it hasn't spread. I'm not so sure. He screwed up doing a shave. I'm so scared. I can hardly think straight. Is it possible it hasn't spread? - Steve

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shirlwhiting's picture
Replies 1
Last reply 6/16/2011 - 1:37pm
Replies by: Anonymous

My grandson (stage III - unknown primary) is losing weight for no apparent reason.  About 10-13 pounds.  He says he feels ok.  Has anyone lost weight as the first symptom of a recurrence of melonoma.

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nickmac56's picture
Replies 1
Last reply 6/16/2011 - 10:59am
Replies by: Becky

As I posted last week, my wife ended up having grand mal seizures due to Cyberknife radiation treatment on the area of her brain where she had her craniotomy to remove the two melanoma tumors which bled. The irritation of the brain and insufficient post radiation anti-seizure medication caused the seizures. She spent 5 days in the ICU while they ran continuous EEG monitors and did CR scans and MRIs. Fortunately there was no sign of other tumors, just the readily identifiable irritation around the original tumor site. 

She is now home and on a fistful of daily medication. But the medication should all come with better warning labels - so if you are ever on the following, be prepared for a variety of side effects:

Decadron or dexamethasome is the steroid. It's an anti-inflammatory - which she was on post radiation but on insufficient dose. Causes mood swings, fuzzy thinking, loss of memory and confusion.

The anti-seizure meds are Kepra, Dilantin, and Lacosomide. They also cause her great confusion, anxiety, make her highly emotional (she is crying a lot) and a bit unsteady.

In talking to one of the neurologists on weekend duty at the ICU who is originally from Eastern Europe - he said that it was pretty common knowledge over there about the side efects of Cyberknife and that they treated far more aggressively the potenital for seizures by prescribing in advance the sterioids and antiseizure meds in suficient doses. So it's a bit of a trade-off - you get guaranteed side effects from these powerful drugs, but at least you probably aren't going to have a seizure and end up in ICU.

She will be weaned off the steroids in the next week or so and that should help. Her attending neurologist says she will get more used to the Kepra (the anti-siezure med of choice because it doesn't go through the kidneys), which is a good thing as she is likely going to be on Kepra for the rest of her life, hopefully on a reduced dose. In the meantime she can't be left alone.

We won't know untl our oncologist visit next week as to how many more weeks this pushes back her next systemic treatment while her brain calms down.

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

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