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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dawn dion's picture
Replies 21
Last reply 10/17/2011 - 12:40pm

I know lots of folks here take curcumin and I have been considering taking it myself.  Anyone know how much a person should be taking?    Thanks for the info.

Hugs and Smiles

I refuse to let this beat me. I WILL NOT LEAVE MY GIRLS! MELANOMA CAN BITE ME!

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Jeannie C's picture
Replies 9
Last reply 10/17/2011 - 9:10am
Replies by: Jeannie C, LynnLuc, Anonymous, Janner, Jamietk, jackiewin

I was diagnosed July this year with stage 2 melanoma. on the side of my nose. I just had a third surgery Oct 12th, undoing  the forhead flap graph. Now i have a few cosmetic procedures to follow, but I'm concerned about the melanoma recurring. I was treated at Sloan Kettering in NYC, and I'm wondering why no one there mentioned cat scans as part of future screening. I was led to believe skin examination every 3 months would be sufficient. Sentinel lymph node biopsy came back negative, so I figured I was in the clear. ???? I always thought melanoma was an "external" cancer, not something that could affect the brain, lungs etc??? Do I need to seek out another doctor?

Life is, you are, be. The great cosmic imperative is to simply be.

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j.m.l.'s picture
Replies 2
Last reply 10/17/2011 - 8:44am
Replies by: Lisa13, momof2kids

I am past my second dose of yervoy. I have experienced almost no side effects. Some constipation, one bit of itching and thats it. DOES ANYONE HAVE ANY IDEA WHETHER THE IPI IS WORKING AT ALL. I thought that having some mean side effects actually meant that the drug was revving up the immune system. thanks much

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My wife was told by our very professional and highly respected radiation oncologist that the Gammaknife would have no side effects to speak of. Especially compared to her previous craniotomy. For her first round of two brain tumors she was very positive and upbeat, almost flip - saying the tumors were nothing and it was a piece of cake. True enough, she was able to zap those two, but my wife did have some immediate side effects (speech slurring, memory problems), as well as some longer term effects setting in around week two post-treatment (general fuzziness and forgetfulness, losing track of her conversation thread). Supposedly these would have resolved in time. Unfortunately she had another five tumors that needed to be treated about 18 days ago. Again, the radiation oncologist was very upbeat, "these are small, no problem, we can handle these, no side effects, the margins are tiny". She had no speech issues this go round (no tumor was in her speech center) and other than some general tiredness had no immediate side effects. But after about ten days, she started having more fatigue and more memory and cognition issues which persist to this point. And which she is not happy about at all. In talking this over with our oncologist he said that she was not the only patient who ended up with more issues than they were led to believe. He did think her brain would rewire and she'd regain lost function, although as my wife pointed out - by the time this ocurred, she might be in for another round of treatment and would probably never regain her previous capability.

I am pretty sure she would have done the Gammaknife treatment anyway, even if they had been more accurate in their portrayal of potential side effects. I'm also pretty sure that in order to get people to go with the treatment they were understating the side effects. Both my wife and I would have rather known about the potential side effects so that when they emerged it wouldn't have been so difficult to deal with. For me it's all about expectation management - if you know what to expect, it is easier to cope. 

She is scheduled for a brain MRI in 11 days, and we frankly expect to see more brain tumors and depending on location and number, have to make a decision about treatment, including whether to do cyberknife, gammaknife or whole brain radiation. At least this time around we are more savvy about the effects. 

Nick

 

 

 

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

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renakimu's picture
Replies 2
Last reply 10/17/2011 - 6:31am
Replies by: FormerCaregiver, KatyWI

in november my mum will have the second 3month visti to the onc, that means 6months after diagnosis.she had this weak a u/s of the upper and lower abdomen and everything was clear, blood test that has LDH increased from 168 to 188 but still in normal values and GGT(if you know what that means - i think has smthg to do with liver) increased from 48 to 51 and the normal values are 19-38, i dont know what cause that...aslo the(ESR) Erythrocyte Sedimentation Rate from 20 got to 10, and i think thats good.also she had a mammography and it was ok.now until she has her appointment i wiil be anxious about GGT, does someone knows smthg for that?

 

blesses to all of you

DiRena

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KatyWI's picture
Replies 11
Last reply 10/17/2011 - 12:21am

Hello everybody,

Most of us (myself included) have been pretty scared at the prospect of whole brain radiation.  The potential side effects are scary and there are definitely some folks who have had a very bad experience.  I just finished my 14-day course of WBR, and my experience was not-so-scary after all.  I wanted to share to encourage others, both now and those who might stumble upon this post when searching the board for information in the months and years to come.

Standard disclaimer...every treatment is individual; this post is the experience of THIS individual.  Your mileage may vary.  smiley

I had a 35 Gy dose, segmented into 2.5 Gy/day for 14 days (weekends off).   Therefore it took just under 3 weeks to finish.  Each dose takes less than five minutes, room entry to room exit.  The radiation itself is delivered in two pulses of 20-30 seconds each.  The only weird thing is that the radiation tricks the brain into seeing and smelling things that aren't there.  I saw a bright blue light and smelled ozone during the radiation pulses, but to my very great surprise, the technicians informed me that neither one was actually happening.

I began on a Monday.  My hair started to fall out on the second Sunday; by Monday (dose day 11)  I needed a scarf to go to work, and on Tuesday I had my friend buzz it because I was shedding everywhere.

I was warned that fatigue was a common and likely side effect.  I had not had significant fatigue.  I have been careful about getting to bed a little bit earlier and haven't had an issue.  Granted, I am an athlete, but I was able to continue working out several days each week, including one workout each week longer than an hour.  I have had no issues continuing full time at work. 

My eyes, ears, and scalp have become much drier than usual.  My contacts seem to "goop up" at night, making my vision a little fuzzy.  I was told that a feeling of plugged ears was somewhat common because the ear canal would produce thicker wax than usual.  For me, it's just been more like my ears are painfully dry.  The radiation oncologist recommended a drop of baby oil; this helps a little but I need to find unscented mineral oil (baby oil is fragranced).

My scalp and forehead are a little red.  My scalp got itchy almost right away, and a short time before my hair started falling out, my scalp became painfully sensitive.  It's getting better, two days after the last dose, but at this point I can only handle my wig or even a hat for a few hours at a time because my scalp is so sensitive.

So far, I don't feel any stupider.  cheeky  The radiation oncologist knows I research on my own pretty heavily, and he was quick to reassure me that a certain study that's out there citing a 50% rate of dementia after WBR is considered invalid because it combined WBR with radiation sensitizing drugs, which is not done any more. 

So there's my experience.  I wish nobody ever NEEDED to do this, but if you do...realize that it might not be as scary as you fear.  It wasn't for me.

KatyWI

Just keep going!

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lhaley's picture
Replies 23
Last reply 10/16/2011 - 9:41pm

I am still shocked but news was bad.  Here I was thinking I had first a sinus attack and then the dentist thought I had a fractured tooth. Was actually scheduled for a root canal.  The receptionist commented during the phone  that it's just not normal that she hears from these symptoms from a fractured tooth.  The dentist had called in 2 others because she was confused. Life would have been so easier.  The PET was planned the next morning for my regular scan.  Called the oncologist and at 6:30 that morning the tumor was discovered.  It's fairly large, 2.15cm and is deep in the area of language/written/ and reading.  By that afternoon I was already loosing my words.  Totally in denial I'm thinking it was anxiety and bloodpressure.  

I had to wait for the appointment and the receptionist kept appologizing that there was an emergency.  Found out later it was because the team had already met. The nuero surgeon was in DC and already sent pictures. The radiologist was already called, I saw him just didn't know at the time who he was. The team worked quickly that helped us to deal emotionally. 

All appointments have been completed. Talked to many different of the oncologists I've talked to in the past. Even my mel specialist that is now retired from Univ of Penn has contacted me and gave me his thoughts.  I'm ready and on Monday I'll be having SRS.  Plan B will be a crainectomy.  They are only doing this 2nd because it is deep.  The Surgeon isn't daunted by his ability but also knows damage in this area can definitely happen.  He already knows how he will actually enter the area if needed to limit as possible.

I've been told that a single met has %80 success.  The hope is that nothing else grows. 

I'm offering the Caring Bridge if you choose to follow my story.  I hate melanoma.

https://www.caringbridge.org/visit/lindahaley/settings

Linda

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CAdesiree's picture
Replies 2
Last reply 10/16/2011 - 2:00pm
Replies by: CAdesiree, Charlie S

i was stage 1b at biopsy... intially mohs was performed.  i saught a second opinion... that dr said he saw satellite.  i underwent a resection & snlb.  they took a total of 7 nodes to test, 3 from one side, 4 from the other.  one came back with micro mets.  i don't know how to proceed...  fortunately the area that was resected was cancer free... but my node was not.  i am to speak w my onc and ask about gentetic testing, a complete axillary dissection, or systemic therapy like interferon or other chemo...  i am a little overwhelmed trying to look into all of these options so i am informed when speaking w my onc.  plus, i kinda freaked out hearing there was any mets, micro or not and didnt get my path report... i plan to do that monday.  in the meantime any experience, guidance or suggestions are greatly appreciated.  thanks in advance!!!

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TracyLee's picture
Replies 6
Last reply 10/15/2011 - 5:26pm

Hi y'all,

Just found a painful lump in my breast last night. Ironically, saw my gyn last week and he missed it. It's more pronounced sitting up, and he examined me lying down.

I'm on BRAF, and have responded very well. I do get ereythema nodosum (painful lumps) as a side effect.

I'll call both Yervoy and Zelboraf patient info lines asap today. I feel I'm in the wilderness: just released by U of Penn to my local onc. And I'm the first HE'S  treated with either drug.

How much do I panic, and how much is likely to just be a side effect?! I'll call the local onc, as I'm due for scans, and I'll call my gyn for a mammo (which I'd told him I wanted to skip, frankly).

Have their been folks with BOTH breast AND melanoma on this board, with both cancers active at the same time?

My head is swimming!

Thanks,

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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nickmac56's picture
Replies 4
Last reply 10/15/2011 - 8:57am
Replies by: nickmac56, FormerCaregiver, Anonymous, lhaley

For several weeks my wife has had numbness and tingling in her right arm. She had an MRI three weeks ago and nothing turned up - they focused that scan on the cervical spine (neck) due to her history of spinal tumors in the lumbar region of her epidural column. Two days ago she woke up and had extreme pain - 6-7 on a 10 scale. She's on pain meds and increased dose of steroids now and that seems to have helped so far. The MRI yesterday of two areas, the brachial plexus and chest, turned up nothing. Our doc said, "not sure where we stand". Hard for me to believe it's a pinched nerve without a cause. With her tumor history you'd think one is lurking and hitting a nerve somewhere. Anyone have any ideas I can pass along to our oncologist?

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

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cwu's picture
Replies 2
Last reply 10/14/2011 - 10:12pm
Replies by: cwu, FormerCaregiver

Hi everyone,

My father has in transit lesions a year after surgery to remove tumor on his right heel. These lesions mostly on his calf and they are popping up on his skin so you can see them (not sure if cuteanous is the right word).  He started his first dose of Yervoy (IPI) almost three weeks ago.  Since that infusion, his lesions have started drying up alot.  There is one that is quiet big and the skin around it is so dry that it started cracking and bleeding.  I was wondering if anyone has similar experience and what recommendations you have.  It is not bleeding alot and it doesnt cause him pain but we are concerned about infection. We were hoping that since the lesions are drying, they would start falling off.  We have taken pictures and sent them to his Dr. and waiting to hear back.

Thank you for any suggestions.

Chau

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Jamie's picture
Replies 4
Last reply 10/14/2011 - 4:43pm
Replies by: Lisa13, jcraigdawson, Jamie, Anonymous

I have been NED 3 years. I had a PET/CT scan 1 month ago which revealed a "subcentimeter lung nodule" with SUV of 2.3....Doc said wait 3 months for further testing..Doc said not to stress it, so does that mean it's probably bening in nature or is there a bigger prbability it could be reaccurence(spelling)??? Any thoughts, or info is appreciated. Thanks ahead of time!    Jamie Stage 3a

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benp's picture
Replies 2
Last reply 10/14/2011 - 4:02pm
Replies by: Gene_S, benp
Strongdaughter's picture
Replies 6
Last reply 10/14/2011 - 8:46am

My father was diagnosed with Melanoma in 1999. At that time he had a Clark's 4 stage IIB melanoma, I think. A couple of his lymph nodes were removed at that time along with a large excision from his back. He was clear all the way through his 5 year check-up. 

Fast forward to this year. About 3 months ago he was having some lower back pain that he felt might have been kidney stones so he went to his urologist and was cleared of that. The pain then migrated to his mid back on the left hand side and he felt that he really needed to do something about it because it was beginning to be unbearable. At that time a chest x-ray was taken and the results showed a mass. From there the accelerator pedal has been pushed to the floor. He went through the PET scan to discover that he had lesions all over his body mostly concentrated to his bones.  He also has cells in one of the lymph nodes in his chest. He is in Stage IV now. He has had a complication that we were not expecting; he broke the top part of his pelvic bone while rotating to get out of the car about 1 1/2 weeks ago.  Radiation was started yesterday so we are hoping for good results and possibly some pain relief from this process. He is BRAF-. He is also slated to start Yervoy sometime this week or next. The oncologist that he has is wonderful and I would highly recommend him to anyone in the Charlotte, NC area. His name is Asim Amin.

So now that you have a little background on what is going on I am looking for information from other patients or family members that have a similar spread of cancer. Most of the people that I have read about have a soft tissue spread. Also, my interest in this whole process is about my future. I have had 20+ dysplastic nevi removed and I am concerned about the chances of Melanoma happening to me. I am here for any information that anyone is willing to provide because I have a firm belief that knowledge important in a time like this. I will be passing everything on to my father and mother.

Thank you!

Knowledge is power!

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