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 6
Last reply 5/1/2012 - 1:25pm
Replies by: atcchris, Swanee, Janner, Anonymous, yoopergirl

I was wondering if anyone could please explain to me exactly what a subqutaneous tumor feels like? Is it small, like a pea? Hard? Can it move under your skin when you are messing with it? I'm not sure what is going on but I have something that is all of the above. Thank You.

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susanr's picture
Replies 7
Last reply 5/4/2012 - 8:23am

Hi everyone,

I am so confused.  Is Avastin off the market in the U.S because of all the fake drug that came into the country???  I hear so many posts that patients are on it and they are being treated in the U.S.  My brother is on Temodor and Abraxane. ....only. 

 

Thanks so much.....It is driving me crazy because they it is not available.

Susan NY

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Bruce Davis's picture
Replies 6
Last reply 5/2/2012 - 11:15am

Feel very fortunate to have been on zelboraf for 7 months. The largest nodule in one of my lungs went from 3.8cm down to 4 mm in about 4 months time. Been through the arthritis like feelings that went from L wrist one day to R wrist the next day, or L fingers to R fingers and other a joints that we're affected. The worst pain is in the balls of the feet called metatarsalgia or plantar dysesthesias as I've come up with by researching on the web and talking to the zelboraf nurses. A lot of running in the past and high arches in the feet I'm sure add to the problem. Get some relief from anti-inflamatorys and ice. Just putting a shout out to see if anyone has experienced this foot pain or has been able to beat it. Like to stay on my feet and continue working as long as possible.

Presently it's "Don't give up."

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big ed's picture
Replies 1
Last reply 4/30/2012 - 7:22pm
Replies by: Kelly7

Hello, I am / was participating in the recent NIH study on Yervoy for high risk stage IIIC. 

One of the laundry list of side effects said  "Rare (but serious)  lower bowel obstruction".    I received the 100 mg drip every 3 weeks for 4 treatmeants.

Well, that's exactly what happened to me - started with diahrea for a week and went to emergency room with belly pain  - was in hospital for 28 days - yup 28 days - like a bad dream.

Had the operation and of course complications where "something burst".  Anyway home now and on wound vac for don't know how long.  Seems like it's one thing after another - didn't know there wound be a month or longer of wound care.

Originally, had melanoma in chest in 1986 (25 yrs ago) and it came back in November 2011.  Had 30 lymph nodes removed with 6 showing activity.

Can only home that with cutting them out - gives me 25 more years....   And that my set back in the study can be used to "help" someone else beat this thing.

have fun

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Replies by: davekarrie, Angela C

Hello all,

Just a bit about my history.  Was diagnoses with a 1.5 mm Mel, back in Nov 2012, 1 microscopic node in sentinel, then 42 lymph nodes removes from under left arm, still numb under there but doing very well overall and currently NED!  I follow this site and kudos to everyone fighting this disease with all they have, and to everyone on this site that helps everyone out, it is truly a great resource and helped me soooo much when I was diagnosed!

Onto my post question.  I have a team for Relay for Life event in Grand Forks, ND on June 1, and have a few questions on Mel outreach.  i want to have a posterboard on Melanoma facts,. and was wondering if anyone knows how best to go about doing this.  I can create it, but didn't know if there were other resources I didn't know about.  I also want to get some sunscreen samples to giveaway at the event, and was wondering if anyone has done this and what company to contact perhaps? 

Thanks for any help, and have a great weekend everybody!

Live life to the fullest and enjoy each day! #noonefightsalone

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natasha's picture
Replies 11
Last reply 5/7/2012 - 7:09pm

Hi!

    I am sorry about silly question, but..

    Is it safe to use fake spray tan ( airbrush)?

   It is spring and I want to look healthy glow , like any normal person:(

Thank you

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Vermont_Donna's picture
Replies 9
Last reply 4/30/2012 - 11:08pm

Hi,

 I have been busy working and not on this board at all over the last few months. My recent oncology checkup (4/25) (PET/CT, labs, clinical exam and discussion) revealed no new melanoma anywhere so I am now 14 months NED! On a separate health note I did have a heart attack 4/2/2012 and was also diagnosed with "takot subo" cardiomyopathy. It is completely reversible. I will start 6 weeks of cardiac rehab on Monday. I was back to work the following week after my heart attack. My oncologist stated it has no connection to my history of melanoma. I am relieved to have no signs of melanoma as my oncologist said he would not be able to treat me so soon after a heart attack. I would need a few months to recover. I was sooooo happy to be NED for sure!

I wish all you fellow melanoma warriors success with your treatments like I have had with my treatment (yervoy). I am considered a complete responder with very few side effects. I have had numerous treatments before the yervoy without long lasting NED status.

On a somber note, I am saddened greatly to learn of our friend Boots passing away from this wretched disease.

From snowy Northern Vermont,

Vermont_Donna, stage 3a, NED, diagnosed in September 2006

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Dgentz's picture
Replies 6
Last reply 4/29/2012 - 8:27pm

Monday I go in for IL-2. I just wish I knew what to expect, but I think I am well prepared thanks to this place.

I had a PET scan and an MRI last Wednesday, so we have current scans, too.

I guess I'm ready!!

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Snickers60's picture
Replies 14
Last reply 5/28/2012 - 10:05am

Anyone have this ?   It's nowhere else on Wayne's body, but his face looks like he BURNED IT.    He started taking ZEL on Monday night.  Poor thing was convinced he had read to take 2 pills in the morning, 2  at night......that is not what the script says.    It is 4 in the AM and 4 in the  PM, so he started that on Wednesday night, when he realized his mistake.   The rash began almost immediately. Has gotten worse.   HE HAD NO SYMPTOMS ON 2 - 2 X D !  

Can anyone give me input on this ?    Is there a ZEL Number to call 24/7  until he can get back to them at MDA !

Also, where do you all find SUNSCREEN clothes ?    Good choices and good prices ?

WORRIED........

Thanks so much,
Nancy caretaker of beloved patient and WARRIOR WAYNE  :-)

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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Woodlands's picture
Replies 4
Last reply 4/29/2012 - 6:17am

Hi,

We live in the UK, my husband is Stage IV and 8 weeks ago finished 8 rounds of dacarbazine with the trial drug E7080, he is currently on a maintanance programme with the E7080.

In the UK we only normally give 6 rounds of Dacarbazine but as this is an American and Japanese trial he has had 8 rounds, he tollerated everything really well but for the past week has had debilitating fatigue and pins and needles in his feet. he is being monitored closely and is having a weeks break from the E7080. 

I wondered as we in the UK are not aware here of the side effects of 8 doses of dacarbazine has anyone out there had any similar symptoms, if so any help or advise would be appreciated!

Results so far show a massive tumour reduction and the latest scan showed tumours were stable.

Many thanks x

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bikerwife's picture
Replies 10
Last reply 5/2/2012 - 7:05am

Lynn finished ippi march 26. Had first scans april 11 they showed mixed results some grew some shurnk and some new ones. Dr said did not want to wait wanted to start zelbraf. We got meds in mail and was ready to start. I began noticing changes thing were shrinkin and some disappeared. Some were size of thumb now are size of peas. Went to Dr. Today he says ippi is. Kicking in and we don't have to start zelobraf yet.

God has blessed us and we give him the praise.

What God leads u to he will. Lead you through

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LLJB's picture
Replies 1
Last reply 4/27/2012 - 9:07pm
Replies by: Janner

Hi Everyone,

I'm new to this forum...just having a bit of a freakout...I had a melanoma in situ removed by wide local excision nearly two years ago. I've just noticed some bruising directly adjacent to the site - can't remember doing anything to get the bruises, and quite a bit of puffiness around the right hand side and bottom of my scar from the removal.

Very anxious that it could have spread to the lymph nodes....Saturday here in New Zealand so no chance of getting to the Dr until Monday unless I went to an after-hours clinic, and not sure it warrants that.

Just wondering...what are the symptoms that melanoma has spread to the lymph nodes, on the shin? Had a bit of a google and didn't find anything much. Also had bad headaches lately...not sure if that's got anything to do with anything...

Thanks in advance.

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Anonymous's picture
Anonymous
Replies 6
Last reply 4/27/2012 - 8:44pm
Replies by: yoopergirl, Anonymous

Hi

 

I am 63 years olds and  live in Californa. I have been receiving SSI for 6 months. I am having to wait 2 years to qualify for Medicare.

I am stage 4, and on a clinical trial for 6 mos. and just became  NED.

I know nothing about what qualifies a cancer patient to be able stay on  SSI and Medicare.

I would appreciate any informationyou can give me.

Thanks so much for taking the time to reply to my questions.

BettiJo

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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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Replies by: LynnLuc

 

Released: 4/27/2012 1:00 PM EDT
Source: Moffitt Cancer Center

 

Newswise — TAMPA, Fla. (April 27, 2012) – At Moffitt Cancer Center, patients with stage III and IV unresectable melanoma are now routinely genetically profiled for several gene mutations, including the BRAF gene, a known driver oncogene for melanoma. Research has shown that mutations in the BRAF gene determine sensitivity or resistance to a class of drugs that are BRAF inhibitors.

Moffitt Cancer Center Researchers Working at Frontiers of Melanoma Research  

 

Best Regards,

 

Jimmy B

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