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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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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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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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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awg's picture
Replies 6
Last reply 6/18/2011 - 5:26pm
Replies by: jimjoeb, Melanoma Mom, Anonymous, awg, Janis B., lhaley

Hello,

My surgeon mentioned a new(er) Interferon protocol that was different from the 30 day high does followed by 3 weekly injections for 11 months. The protocol was/is 1 weekly injection that has been used(studied in melanoma) for up to 5 years. I do not have any additional details on dose or anything else at this time.

I was wondering if anyone has any information on this protocol. If it is new I like the ideal of 1 weekly injection vs 3 but that may depend on the dose. It sounds similar to an MS protocol to me.

I am scheduled to see my hemo-onc  for my first visit on July 1.

 

Thank you,

 

Allen

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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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Anonymous's picture
Anonymous
Replies 13
Last reply 6/18/2011 - 1:11am

I am sure this topic has been discussed before but was curious on folks thoughts.  I was recently diagnosed with Melanoma and have been practicing sun safety but this past weekend I noticed while out in the hot sun (I've been trying to still live my life) that I missed a few spots with sun screen and have a few red spots where I got too much sun.  Ugh, I've been so careful about putting on hats, sun glasses, sunscreen, layers etc.  Should I be totally freaking out that I am just fueling melanoma (even though last scans showed everything was clear?).

Thoughts on this? 

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/17/2011 - 10:38pm
Replies by: Gene_S, TracyLee

Hi Gene,

 

I have been off the board traveling so I have lost track of many people's progress on MPIP.

If I recall you had surgery weeks ago, how are you doing & are you having any form of treatment? If so, where.

Looking forward to your update.

Best to you.

Douglas

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Janis B.'s picture
Replies 4
Last reply 6/17/2011 - 8:32pm
Replies by: Janis B., nicoli, MichaelFL

I had my second Oncovex injection a week and a half ago.  Now experiencing hair loss.  Anyone know anything about this?  It's not listed as a side effect, but then, it's a trial drug, so who knows.  Thanks for any and all feedback (including sympathy - 2nd go-around for hair loss :-)

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aynw's picture
Replies 13
Last reply 6/17/2011 - 8:26am

Hello.  I live in Manitoba, Canada and was recently diagnosed as Stage IIIA.  The oncologist advised that in my province the options are to do the 1 year of interferon alfa 2b, or observation. There are no other treatments or clinical trials that I qualify for here. I know there is controversy regarding efficacy of i/f - I am wondering if any of you could provide advice / feedback based on your own experiences.  I am 41 with 2 daughters at home and want to treat this as aggressively as possible...so interferon, observation or is there something else out there that is considered more effective?

I know in the end it is a personal decision my husband and I will have to make, but your feedback will be helpful. 

Take care,

Ayn  

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gabsound's picture
Replies 2
Last reply 6/16/2011 - 4:32pm

Thanks a lot, for the replies to last post. My gut feeling is these lumps are not good. My surgeon did mention fat necrosis as an option. He also said just due to surgery you can get fluid collections e.g. I didn't mention that I also did an ultrasound on myself (I'm a sonographer- I've mostly done gyn and obstetrics for last 20 years). Not that this is my area of expertise, but if I saw something like these near a woman's ovaries, I'd say "they better take that out- could be cancer". I showed images to both dr's as well. Also one of these lesions increased a cm in each direction in 1 week.

I appreciate your support. Still waiting for docs to talk, and to get call re: surgery scheduling. My sister had bx on her "good" breast. She has to wait a week to see her surgeon. Hopefully she will see oncologist as well. I felt the lump myself recently. It's huge! Hope it hasn't spread far.

I had my re excision yesterday. At least 3 inches for small lesion. Path report just said melanoma in situ-no depth or other info. Also saw cardiologist due to chest pain. He's convinced it's all stress and prob some GI issues, so will take Prilosec. Finally, somebody said I'm ok. Yeah- prob not going to have a heart attack soon :)

I'll update w any news.

Julie

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Vermont_Donna's picture
Replies 20
Last reply 6/16/2011 - 3:52pm

Hello MPIP family,

King posted under a different thread about our friend Sharyn, but I thought I would start a separate thread for Sharyn. With tear streaming down my face, I just read about her passing today. Sharyn and I developed a special friendship, and exchanged many emails. Someday we planned to meet in Montreal with Val, and have some fun times. I HATE this damn disease!!! Sharyn, my friend I will miss you so much, you are in my heart forever. My sympathy to your loving family and friends.

Vermont_Donna

ps I was unable to cut and past the family email and obit because I am an idiot with computers but you will find it under the question about Sharyn and Val, and King kindly posted it

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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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dawn dion's picture
Replies 16
Last reply 6/16/2011 - 9:25am

Okay folks here we go again - I am off to Moffitt on Thursday for my second set of scans since beginning the ride on the BRAF/MEK  train.   I thought I had this under control this time around but  the closer Thursday gets the more I am once again ready to puke.   I don't know which is worse - Melanoma or Scans.

To all of my friends out there on the train with me, I know that some of you are in the same boat with me this week and I am sending out lots of positive vibes and tons of cyber hugs for all the best.

Hugs and Smiles to you all

Dawn

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

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shellebrownies's picture
Replies 11
Last reply 6/16/2011 - 2:51am

Good morning everyone!

If you've been following along with our story, then you'd know that he didn't end up qualifying for the BRAF/MEK trial and he was instead offered Chemo as a hopeful stopgap. Dr. Lawrence was clear in that it wasn't a high chance it would work effectively (25-30% chance, basically), but with how aggressively Don's cancer was spreading, other options like Ipi were not viable.The hope was that the chemo would work enough to bring Don's liver functions back into a more stable place so that he might qualify for a compassionate use PLX trial that was opening soon.

Don had his first treatment (carboplatin and paxiltaxel) on May 29th. After a tough couple weeks (he ended up getting a staph infection and spent another week in the hospital), Don went for his follow up visit with Dr. Lawrence on Monday.

He asked Don how he was feeling: better, worse, or the same. Don said about the same (keep in mind that the Vancomycin he is still taking for the Staph infection makes Don vomit at least twice a day). I mentioned to Dr. L that it seemed to me that the tumor under Don's arm had shrunk some (it actually had been bulging out of his armpit making it so Don couldn't put his arm down to his side completely). He asked Don if he thought that also and Don said yes, because he could bring his arm all the way down to his side again.

Dr. Lawrence took a good look under his arm and palpitated the area well. He was shocked and amazed at what he found. He told us that the response that Don had was something he would have expected if he were on the BRAF trial, but never expected to see after chemo. He said that the underarm tumor used to feel like a softball; now it felt like a couple of marbles.

His liver numbers, we later discovered, had a similar transformation. Don's LDH level on the morning of 5/30 (a few hours after receiving the Chemo) was 2375. The LDH level from Monday's blood draw was 539.

Based on the level of Don's response, rather than put him into the Compassionate Use trial as planned, Dr. Lawrence wants to continue Don on the Chemo for as long as it seems effective. This will be judged treatment by treatment, with the knowledge that the BRAF drugs are still there as a resource if needed.

It also seems promising that the pain medicine levels that were working well for Don when he left MGH post-chemo treatment are too high for him now. His pain management doctor (who we also saw on Monday) agreed that they should be lowered and is bringing the Methadone dose down from 10mg 3xday to 7.5mg 3xday. Even after switching this on Monday, Don hasn't had to use his breakthrough meds since Sunday.

We are stunned and thrilled that we finally have made some headway against this beast. Still, I have to admit that I am having a hard time switching gears; I still am afraid to have too much hope. Please help me believe. 

Thanks to you all, and please, keep Don and I in your prayers...it finally seems to be working! smiley

 

Michelle, wife of Don

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