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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justzack's picture
Replies 8
Last reply 1/24/2011 - 12:49am

I am new to the board, so excuse my posting ettiquette :0)  I had a 1.55 Melnoma, Clarks IV on my right infamammary (under right breast, chest wall).  WLE and SLNB was performed by Dr. Zaeger at Moffitt in Tampa.  Ongoing health issues - unexplained hypertensive crisis', tachycardia, sever skin flushing, facial swelling, massive headches, multiple admissions and ICU stays, unexplained acute renal failure in april 2010.  Last month, I had a case of pneumonia and xray showed possible lung nodules ot right lung and medastinal shift with enlarged heart, thyroid, and liver.  In prior scans in April, no evidence of what is now showing on scans.  Primary Care doc ordered Thoracic Ct Scan.  Impression results:  3 calcified lung nodules that appear to be granulomatas and 3 non-calcified lung nodules, that are not specific.  Recommendation to follow-up with oncologist due to patient history and possible metastasis.  The non-calcified nodules are very small 2-3 mm.  My chief complaints right now are severe back and chest pain, that gets worse when I lie down.  Minimal coughing that produces no sputum.  Weightloss of 22 lbs this month, but still eating ... big girl so not really worried, but just unsually - was on weight watchers for 18 months recently and couldn't lose more than 15 lbs due to major fluid and swelling of face and stomach.  All of this to say ... we are at a loss, we are fearful the NED Badge will no longer be mine to wear.  I have an appointment on Monday, January 28th with Dr. Zaeger at Moffitt, he has read the report, but not seen the films.  He advised his nurse that he wants to see me soon.  The appointment was scheduled for first available, just a week and a half from the date we notified them ... unheard of at Moffitt ;0), but really welcomed.

So my question to all, does anyone have experience with lung mets, how small or big were they, what were your symptoms, what are treatment options, what are biopsy options, anyone diagnosed with pneumonia - but really melanoma lung metastasis ... I hav so many questions, but so glad to have everyone's guidance.

Peace to all --- Missy

He has taught me to say, it is well, t is well with my soul ...

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Dawn's picture
Replies 13
Last reply 2/12/2011 - 10:41pm

My nine year old daughter just completed her 3rd infusion of ipi.  She was diagnosed in Nov 2010 with Melanoma of the CNS witha primary in her brain....very rare for a child.  She is tolerating it well.  Itches tremendously at times, but otherwise we are not seeing many other problems.  Clinically, she is doing well.  This is the best she has felt since she was diagnosed.  Prior to ipi, she went through WBR and was on temodar.  We were told that she is the only child on this right now...we had to work with the doc, the pharmaceutical company, and the FDA for this to go through.   My question is,  are there any other children out there that anyone knows about that are on ipi?  I would like to connect with them if possible.  Thanks Dawn

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2atlascedars's picture
Replies 1
Last reply 1/22/2011 - 9:10pm
Replies by: Janner

I am finally back on my feet after a three-month ordeal that began with an October 26th diagnosis of MM on the sole of my foot. I just stopped needing to use crutches this week, after having been in a wheelchair for 6 weeks following my WLE on November 19th. I had to have a full-thickness skin graft to reconstruct the WLE site, which required nearly 3 weeks in a hospital and surgical rehab center, followed by countless hours of wound care and physical therapy by home health care providers. Also, I could not drive or work until January 3rd, when I was first permitted to use crutches.

I was VERY fortunate to have my SNB results come back negative, particularly since my MM was 3.7 mm deep. I have read so many post of yours on this site which indicate much shallowed depths of MM that had spread to the lymph or cirulatory systems. Since I had no ulceration, I believe I am stage 2A. I will have my first of many 3-month follow-ups with my Melanoma Specialist in February. I was wondering if anyone can offer their advice on what questions I should ask and what tests I should insist to be performed to ensure that I am, and continue to remain, NED.

I feel as though I should know as much about my primary melanoma as possible, such as the genetic profile, so I can stay abreast of the continued advances in targeted treatments. I know I am not truely cured yet, and want to be as prepared as humanly possible to quickly send my melanoma back to the HOLY F----ING HELL that it came from...if it should come back.

Also, I have heard that 8% of patients who had local-only disease go on to have a recurrance (spreading) of their original primary...is this correct? Are there any stats that break this down to more specific stages? (References are greatly appreciated).

Thanks for your help fellow MM Warriors!

Best regard,
Mark from California

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chet's picture
Replies 11
Last reply 1/24/2011 - 3:55pm

So I just got done with my first week of high dose IL-2. It was pretty rough but I managed to pull through. I did 9 bags total and wanted to get to 14 but my doctor said it was getting too toxic. She said it was not so much about the quantity but more so about my immune response. The worst part of the whole week were the rigors. The nurses would give me a shot of demerol right when I was starting to feel it coming on but it made me super nauseous to where I vomited a few times but they gave me a shot of phenergan right after to combat that. The third night was the worst for me. My allergies made it difficult for me to breathe that night so they had to give me oxygen. I don't really remember much from that night but the nurse told me I had a heart rate of 190 that night which was like me running a marathon. I'm at home recouping and I go back in on Feb. 7 for my next cycle. I'm not experiencing rashes like a lot of others but I'm peeling a lot along my ears and on my neck. My lips are super cracked and feel gross. I didn't sleep a wink last night. I heard that the IL-2 causes insomnia. Any truth to that? Anyway, how long until my skin goes back to normal? I don't like feeling crusty lol.

“The secret of health for both mind and body is not to mourn for the past, worry about the future, or anticipate troubles, but to live in the present moment wisely and earnestly.” — Buddha

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Amy Busby's picture
Replies 6
Last reply 1/24/2011 - 10:20pm

I have no idea what I should go after for my next line of treatment.  I don't seem to be having a response to the ipi.  I am still on the trial for the 10 weeks off period, but my onc and I agreed that I should be looking at alternatives since I'll probably be booted at that time for greater then 25% progression.  I am in alot of pain from my leg mets.  Going up and up on the meds.  Dennis thinks I really need to address that first since I am in so much pain.  But if I do radiation then it pushes me at least 4 weeks out to do any trials.  The one I'm looking at most strongly is the E7080 drug with temador, but there's only one or two spots left.  I have an appt lined up for next week to start all the papers / tests / etc.

Or I could start radiation on the left leg and possibly have hope of walking again like a normal person (wheelchair and walker bound now).

I continue to praise God in this storm, counting my blessings & enjoying my "bonus time!"

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Kim K's picture
Replies 13
Last reply 9/24/2011 - 8:20am

I also got a firm comitment on 6 month PET/CT whole body & brain MRI with and without contrast.  I go back in July unless anything pops up in the meantime.

I also had to make sure they don't pull the "we can't give you your results over the phone and the Dr. is gone for the day" crap.  My doc was shocked when he heard they wouldn't tell me my results over the phone.  We already had a deal that it is fine to do so.  I mean it's not like because I am in medicine therefore I am being a pain, but rather, if there was something I would want to know everything PRIOR to my appt. so I can spend the time constructively developing a game plan that made sense.  I could spend the time more productively and have my questions lined up and research done PRIOR to my appt.  It didn't help that the receptionist at this particular branch office isn't the brightest crayon in the box.....

I will recheck next week to ensure that it is the first thing that shows up is my Dr.'s consent to read me my results over the phone and or fax them to me as soon as they are reported.  Damn stupid beuracracy.  My doc did get a chuckle out of my Mela-sucka-noma shirt.  (The one that BG has).

I also ran into my lung surgeon who seemed a little suprised I was still doing well.  If only I could be a fly on the wall at the next tumor board meeting.....

I also can't wait for my new Sole 35 eliptical machine.  Now that I will be around for a while more, I guess I need to get my butt back in shape.  Jade my 5 y/o daughter insists Mommy is only fluffy and not fat.

Cancer Sucks Shit Happens Nothing is ever 100% bad, there is a reason and silver lining in everything. Sometimes I need a good light and my glasses to find it though. You can't fix stupid.

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LynnLuc's picture
Replies 9
Last reply 1/25/2011 - 5:05pm
Replies by: LynnLuc, filbert, MARTERWAG, Rocklove, Tracy Chicago, Anonymous

I am wanting to go back to work...dx with stage 4 melanoma-I have been NED for nearly 9 months . I am still in the trial here at Moffitt.  I will need 2 more days off for treatment for the trial...Am I crazy for wanting to go back to work? I know if I do go back I will lose my state disability ( from state job in North Dakota) as well as my SSDI. If I get reoccurrence I will never get my North Dakota disability back as I am in Florida now...I wonder how hard it will be and how long it would take to get the SSDI started again...anyone know if it would be easier the second time around?

I feel like I can't sit around and do nothing like I am waiting to die. Yes I know I felt that way in the beginning, but now I really want to move forward and hope and pray for the best.

Another question...should I tell them at my interview about my diagnosis? Or wait and tell my direct manager/supervisor. I know the law says they can't discriminate...but in this  area unemployment is 15% and afraid they can pick and choose and trump up a reason not to hire me if they don't like my dx...I do not want to claim disabled ...I want  to be hired because of my skills and experience...not because of my dx...

anybody want to throw some thoughts out there?? Thanks, Lynn ( have interview next Wednesday...)

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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carol b's picture
Replies 7
Last reply 1/23/2011 - 11:33am

my pet scans just showed only the tumors we can see and feel..NO mets anwhere eles in my body. THANK GOD FOR THAT

Believe all thing are possible, believe faith can move mountains, believe in the healing power of prayer and never ever give up on your dreams

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nickmac56's picture
Replies 18
Last reply 9/17/2012 - 11:26pm

My wife is Stage 4 with tumors on lung being monitored as part of her clinical trial on Ipi.  Has had a number of subcutaneous tumors removed.  Is getting her 12 week scan next Tuesday, but we know Ipi hasn't worked, yet, because minimally she has some new ones on her back and stomach.  We suppose it's possible that there may be some effect between week 12 and week 16 scan - anyone else seen reductions during this timeframe?  Our oncologist is terrific and there is great care here in Seattle, but we are running out of options.  One thing we apparently will try next week is a permanent regimen of Tamoxofin  - to shut down her hormone system because in the past there has been some weak linkage to hormones and melanoma - any one else gone this route?  Lastly, assuming Ipi failure, has anyone then gone on to IL-2?  She started off with Leukine which got her onto the clinical trial when she had a reaction to it.

thanks for any help or suggestions,  Nick

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

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Anonymous's picture
Replies 2
Last reply 1/27/2011 - 6:59am

Hi,

 

I am new to the MPIP site & been reading everything. I am stage 3, unrescetable Braf positive. My doctor says I qualify for Braf or Braf/MEK combo trial.

Would like to know for anyone what kind of side effectss and timeframe for a response (tumor shrinkage) have you experienced.

Also, if you get "remission"/no more tumors do you still have to kep taking the drugs forever???

I am scared and hope to learn more from you so that I can go into the trial with realistic expectations.

Any feedback on your experience would be greatly appreciated.

God Bless you all

Lena

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molly's picture
Replies 2
Last reply 1/22/2011 - 10:07am
Replies by: molly, Anonymous

Does anyone know of a board like this for Prostate Cancer?

Thank you so much,

molly

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jlevang's picture
Replies 2
Last reply 1/28/2013 - 10:36pm
Replies by: mkt, Carver

I'm new to this forum, and new to the world of melanoma. I was diagnosed with a stage 2a melanoma on my thigh in Dec. and had the wide excision and sentinel node biopsy done on 12/31. The nodes came back negative, which was a huge relief, and now I'm trying to educate myself on what I should be doing to prevent reoccurences. Recovery is mostly going well, except for a large lump that developed around the incision near the groin where the lymph nodes came out. There is one firm lump at the top of the incision, and then a larger one running most of the length of the 5" incision. The surgeon said it is likely a seroma, and that he could aspirate and drain it, but that they often come back. He recommends letting it go away on its own, which he said can take weeks or months. I'm hoping someone has gone through this, and has advice, or information about how long it takes, what to do, etc.  I'm having a hard time finding much information about seromas, especially in the groin area. Sounds like they are more common in the armpits. It's not really painful just uncomfortable. Thanks.

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Shelby - MRF's picture
Replies 8
Last reply 1/21/2011 - 9:03pm

Can you spare a few minutes to take a survey?

Synovate Healthcare is a medical and healthcare market research firm.  They are conducting a market research project and would like to ask for your assistance.  This is an opportunity to offer your insight and perspective regarding treatment for metastatic melanoma.  To complete the survey, you will first be asked a few qualifying questions.  In return for completing the 25 minute survey, Synovate Healthcare is offering $35 for your time and a donation to the MRF.

Synovate Healthcare will keep all of your answers completely confidential and results will only be reported as a whole – not as individual responses.  Please note that when you click over to the survey, you will be redirected to the Synovate Healthcare site.  The survey is done online.

If you’ve been diagnosed with melanoma and are interested in participating, please use this link:

https://mr01.equesta2.net/mrIWeb/mrIWeb.dll?I.Project=U55J8EMAILADD&i.user2=Advocacy1 

Once you have completed the survey, there will be a page to specify where you would like your honoraria sent. Your participation is enormously helpful! 

Shelby - MRF

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Nebr78's picture
Replies 3
Last reply 1/21/2011 - 11:39pm
Replies by: SusanE, Lori C, sharmon

i am waiting to evaluate 2 golf ball size lumps on my face and chest.  I had 7-8 strong doses of radiation and if they begin to shrink He will give them some more zaps..Strong chemo is out of the question as I have serious heart disease.

What I am having trouble facing is if the lumps don't shrink, there is nothing more that can be done.

How long might it be before the tumors kill me?  And will it be done slow or fast.?

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Nebr78's picture
Replies 1
Last reply 1/20/2011 - 8:40pm
Replies by: W.

Has anyone had any bumps, lumps on their body and had them treated with radiation?   If so, did it work.   I have 2 lumps (tumors), one on side of face and another in front of right arm pit.  They gave me 7-8 strong radiation treatments a few days ago. Nothing is new except the one on the face hurts like the devil unless i take pain pills.   Is Melanoma resistant to Radiation you think.     Retired in Nebraska

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