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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Dynasysman's picture
Replies 18
Last reply 7/18/2011 - 8:52am

Got scan results back yesterday.  As good as we could have hoped realistically.  Stage 3.  Brain MRI negative.  The only tumor we found was the one that ultrasound-biopsy revealed in my left sternocleidomastoid muscle...and it was somewhat SMALLER (8mm in March, 5mm last week).  I see the surgeon tomorrow, ONC on Tuesday, and expect we'll start therapy a week from tomorrow (or sometime that week).

Life in the "New Normal":  isn't it amazing what we come to consider "good news"?

I hope each of us keeps getting the news we hope to hear...

Never give up. Never give up. Never, never, never, never, never give up. WInston Churchill It ain't over 'til it's over. Yogi Berra My 20th anniversary is only 9+ years away. Personally, I'm thinking champagne & oysters. Now I just have to get there

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Solodad's picture
Replies 14
Last reply 7/18/2011 - 6:57am

 

Hello,

I posted this on Cancer Compass, then found this board. Seems like maybe a melanoma-specific board might be worth a try. Anyway, here's my story.

In July of 2010, the removal of a mole on my left bicep led to a stage IIIa diagnosis (one lymph node with 1mm focus of cancer cells). Had the SNB, then a full axillary node removal from left armpit (no positive nodes there). I did not do the Interferon for reasons I won't go into here, but radically changed my diet and added various supplements which supposedly are beneficial. (AHCC, Astragalus, AveUltra, Vitamin D, Modified  Citrus Pectin, Boswellin, Bromelain, Beta Glucans, Reishi and Maitake capsules, Melatonin, Flax oil and flax seed, juicing (vegetable and fruit), broccoli sprouts, organic produce, no meat, no cheese, no processed food, no soda, no sugar, no alcohol, etc. etc. etc.) 

The thing is, I can't think of anything else but melanoma for more than a few minutes at a time. I feel constantly worried and on the verge of bursting out in tears. I'm constantly researching one thing or another about melanoma online and it pretty much always turns out to be more bad news. Every little twinge or ache in my body makes me worry. I keep having regrets about not doing the Interferon treatment, and wonder if there is anything else I could be doing. The clinicaltrials.gov website always turns out to be a total waste of time, since there's either nothing for which I qualify (a good thing, I suppose), or it's so far away and so complicated that it won't work for me, or there's no guarantee I'd even get what they're testing. Worst of all is the thought of not being around for my young son, who doesn't even know what's going on with me yet.

I guess I'm just looking for some feedback, some advice or support, or some... well, I don't know. I don't have anyone with me or near me to give me a pep talk or clue me in on things I should be aware of. I thought maybe just hearing from others might help  somehow. How do you "disconnect" your mind from melanoma? How do you turn off the worry?

- solodad

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Terra's picture
Replies 11
Last reply 7/18/2011 - 3:00am

We are so scared, tired, and besdie ourselves.  Derek was removed from his trial on Thursday after 5 weeks - P13K Mek inhibitor - Nras positive, BRAF negative).  He has been feeling great, decreased his pain meds, lots of energy, etc.  His blood tests this week showed his CV levels were at a critical level (breakdown of muscle enzyme).  ABout 2700 and at 2400 you are off the trial.  His has gone up before to somewhat high levels but had been decreasing and levels were stable. 

CV levels have gone up in other patients as well so we know it is a side effect of the drug but they also can rise due to extreme physical activity and Derek, in an effort to keep busy and get things done, layed flooring with my dad every day for 4 days prior to this appt and was exhausted at the end. 

Our Drs are trying to plead our case to get us back on thinking that his levels shot up so high due to the physical labour - will find out Monday - is there anything we can do in the meantime.  We did believe in this treatment very much.

What can I do?  If he has a cat scan is it ethical to take him off if it is working?  Can we do anything?  We don't have the same options in canada and derek will not spend thousands of dollars travelling to the states and "take that away from his kids" - we can try ipi and IL-2 - but don't want to be taken off this trial...

I am due to have a baby in 3 weeks and cannot afford to be looking now for a new trial - we NEED to stay on this one.

Any suggestions please - Terra

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ChicagoTom's picture
Replies 8
Last reply 7/17/2011 - 8:45pm

Hey everybody! I was diagnosed as a stage 3 last week. Waiting on my PET scan results. I had a large melanoma removed from the back of my leg just below the knee. I now have a hole the size of a hockey puck in that area. I also have an enlarged lymph node in my groin, but it's also infected, so they have to wait a bit to do a biopsy there. I had a CAT scan of most of my body while I was an inpatient, they didn't see anything of concern. I also had an MRI of my head, also nothing there(hehehe). So now I am just playing the waiting game that so many of you have done. Next week I have appointments with plastic surgery, oncology, and surgical oncology.

I let my melanoma fester for WAY too long. It became an open wound, got infected(Staph aureus). What made me finally seek treatment was after the second of two camping trips in June, there were MAGGOTS living in it! I sat down to go to the bathroom and noticed something white hanging out of my melanoma. At first I thought it was puss, so I wiped it with some alcohol and it moved! Then I got some tweezers and contorted myself so I could get in there. I pulled out 6 maggots, woke up my wife and went to Northwestern Memorial in Chicago. So now I am starting the process of putting myself back together. Not focusing on why I didn't seek treatment earlier. I have grown tired of doctors, nurses, friends, and family asking me why I didn't tell someone earlier, I want to focus on the future and positive things, not the past and negativity.

So hello, nice to meet you fellow melanoma'ers. I'm ready to join you in the battle against melanoma. I'll be receiving treatment at Northwestern and feel very confident with the medical staff there, they were fabulous during my 5 day stay as an inpatient.

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Lisa13's picture
Replies 9
Last reply 7/17/2011 - 7:38pm

Last Friday was my second dacarbazine treatment.  I'm tolerating it quite well and havn't experienced some of the mild symptoms I had during my first treatment.  In the last 2-3 days, I've been experiencing horrible heartburn and acid reflux. I've always had these problems in the past 10 years, but they were non existant until this second round on chemo. Has anyone experienced these stomach issues during chemo treatment?  I'm taking over the counter Zantac after approval from my oncologist, but it's short lived so my discomfort returns. It's so bad, I have to sleep sitting up so my stomach contents don't work their way into my throat. My appetite is great and I have no nausea.

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Karin L's picture
Replies 6
Last reply 7/17/2011 - 11:55am

I apologize in advance for my ignorance .  A brief history.  Back in '06 I had an orange sized area from my left thigh surgically removed that was melanoma (cannot remember the breslow? Clarks...etc.).  A SNB was done that came back clear.  CT Scans yearly came back clean (later found out only the abdomen and chest were being scanned) In Nov. of  '10 I felt a lump in my left groin area that turned out to be several nodes of mel as well as metastis to the liver and a "sprinkling" in the lungs.  My oncologist at the time really messed up my head by telling me I had "about a year to live" and "there was nothing more he could do".   He gave me the name of a melanoma specialist to see which has been my lifeline for the last 8mos.  I had left his office with no hope at the time and protected myself mentally (my minds way of doing so) by not willing to hope too much.  Makes little sense, but it is what it is.  I was willing to fight though. 

Fast forward.  Was accepted into the OncoVex clinical trial.  Tumors in groin were shrinking and Dr. was very hopeful the immune system was taking care of the rest.  First CT at 3 mos. showed otherwise.  Many new tumors in the liver were found.  Dr. wanted to do high dose IL2 asap.  Began in early Apr. and ended stay 4 approx. 4 weeks ago.  Went for CT last Friday and here is where my question begins.  I know what the Dr. said and I feel absolutely blessed, but I am left with questions so I come to you since they sound so ignorant when I think them. 

All tumors in the liver are gone except one small area (the original area).  No more treatment at this time and Dr. is very confident that area will be gone by next scan (2mos).  He also said (and told me he rarely says this to his patients) that he believes by next scan I will be in "complete remission".  

I can still feel the tumor in my groin (as it was very large) although it does feel a tad smaller than before.  Can you still have tumors and they are not active?  Are they dead?  Do they disappear in time?  If mel returns, does it return to those original areas affected first or it doesn't matter? 

I am having such a hard time wrapping my head around all this. 

Karin

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kim2712's picture
Replies 14
Last reply 7/17/2011 - 11:01am

My 25 year old son passed on May 22nd after his melanoma returning on March 7th. This is by far the most painful thing I have ever felt. A mother should never have to bury her child. I can't get past the images of him in the hospital, and the image of him taking his last breath...it's horrible. I can't focus, sleep, enjoy anything...so painful.

I pray that someday there will be a cure for this dreadful, viscious disease. I am going to organize a walk benefit in May in his honor to raise money for research...I will do this every year as long as I live, and Erik's brother's will continue it after that.

Praying for you all that you stomp this beast out of your bodies!

Peace and Blessings,

Kim

Mother to Erik 6/11/1985-5/22/2011

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debandmike's picture
Replies 5
Last reply 7/17/2011 - 9:50am

My husband has just returned home from his second series of IL-2. Compared to the first series of treatment he is doing great. I hope that means the IL-2 is working even more. We will enjoy this week with him home and then he will head back to the hospital for the second series of Round 2. Aiming for NED!

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triciad's picture
Replies 13
Last reply 7/17/2011 - 7:37am

Hi Everyone,

The responses from my last post has my curiosity flowing.  My doctor spends around 2-3 minutes with me each visit.  I am stage 3B.  I always thought that this was normal, but from your responses, it looks like I am wrong.

I'm wondering, just how long does your doctor spend with you during a visit/checkup?

I hope many of you will participate in this little survey...could turn out very interesting!

Thanks!

Tricia

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ccbreeding's picture
Replies 4
Last reply 7/17/2011 - 1:04am

I was diagnosed with stage III almost four years ago.  At the time I was 34 years old and had three young children and a loving husband.  And I was scared to death!  I found this site and fell in love with it:)  actually, I was quite obsessed reading it...there were always posts that encouraged me, but there were also ones that scared me.  As time went by I had "friends" that lost their battle to the beast.  All this to say, I hope I can encourage anyone that may be newly diagnosed.  I have had four wonderful years of being NED.  My lymphedema in my leg is there but never too bad and doesn't hinder me.  I am able to worry a little less about the beast returning.  I have run a marathon (my first and probably last), homeschooled my kids, moved to a ranch and built a house:)  Life is good for today... And God is great:)  no matter what tomorrow brings.  Enjoy the moment...it's really all we have guaranteed and don't worry about tomorrow...I feel like when I worry and fret I am letting melanoma win.  

Hope this helps someone:)

Courtney Stage III and still NED

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karpathian's picture
Replies 5
Last reply 7/17/2011 - 1:00am

Hello all,

I'm new to this forum but had a question that I hope you can shed some light on.  My sister had a melanoma excised a couple of weeks ago they said that they would let her know if they got it all but it's been 10 days so she called and they said that they "sent the results to surgery and would call tomorrow."  When she asked them what it means to send results to surgery they said "it means nothing until you talk to the doctor tomorrow."

Does anyone know what the procedure is?

Thank you in advance for any clarification.

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DejaBlue's picture
Replies 1
Last reply 7/16/2011 - 10:46pm
Replies by: washoegal

Hey,

 

I'm aware there are dozens upon dozens of topics regarding "IS THIS MELENOMA??" and such, I've taken that into consideration. I've done a lot of research online, and I've found mixed answers. Nothing I was looking for specifically.

So this is my concern:

 

I'm 18 years old, and have an asymetrical slightly 2 colored mole on my chest. It's on the rights sight, a little lower than my right nipple, but towards the middle of my chest. I went to my derm about 2 years ago, and he removed 3 of them (one on my leg, 2 on my back), tested them, and they showed no signs of melenoma. However; he left the one on the chest by accident. I have shedualed an appointment for it's removal.

I very worried about it being missed, but:

The mole has been unchanged for almost 4 to 5 years. 

It hasn't changed in size, shape, or color. 

Clothing has just recently started to irritate it just slightly (Or I think I've just been thinking about it since I shedualed the appointment, so I triggered a mind game with my mole)

The mole is very light in color, almost my skin, expect for one part which is a little dark. The overall size is slightly smaller than a pencil eraser.

 

As I said, I know it's the internet and you guys can't do lab tests on me, but I've been paranoid of every kind of disease since I was very young, and I set up a derm appointment for very soon.

 

Since it's unchanged for over 4 years, is that a good sign? 

 

Thanks you for your time.

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Anonymous's picture
Anonymous
Replies 3
Last reply 7/16/2011 - 10:45pm
Replies by: MichaelFL, DejaBlue, Janner

Hey,

 

I'm aware there are dozens upon dozens of topics regarding "IS THIS MELENOMA??" and such, I've taken that into consideration. I've done a lot of research online, and I've found mixed answers. Nothing I was looking for specifically.

So this is my concern:

 

I'm 18 years old, and have an asymetrical slightly 2 colored mole on my chest. It's on the rights sight, a little lower than my right nipple, but towards the middle of my chest. I went to my derm about 2 years ago, and he removed 3 of them (one on my leg, 2 on my back), tested them, and they showed no signs of melenoma. However; he left the one on the chest by accident. I have shedualed an appointment for it's removal.

I very worried about it being missed, but:

The mole has been unchanged for almost 4 to 5 years. 

It hasn't changed in size, shape, or color. 

Clothing has just recently started to irritate it just slightly (Or I think I've just been thinking about it since I shedualed the appointment, so I triggered a mind game with my mole)

The mole is very light in color, almost my skin, expect for one part which is a little dark. The overall size is slightly smaller than a pencil eraser.

 

As I said, I know it's the internet and you guys can't do lab tests on me, but I've been paranoid of every kind of disease since I was very young, and I set up a derm appointment for very soon.

 

Since it's unchanged for over 4 years, is that a good sign? 

 

Thanks you for your time.

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ValinMtl's picture
Replies 6
Last reply 7/16/2011 - 8:53pm
Replies by: wgalinat, Terra, ValinMtl, Bruce in NH, Anonymous

Well, back from NIH -NCI in  Maryland.  They removed 2 masses in left groin (2 lymph nodes).  Now into lab to produce the white cells (TIL) that will be needed for trial.  Will fly back down for meeting to discuss which arm of trial I will be on.  Would prefer total body radiation arm but other arm is good as well. Thank goodness for Warren G.'s timely report on being healthy after 5 years! and for his kind assistance. I was so down about a month ago with not any other 'good' plan available in Quebec.  NIH happened to start up the same trial again in March and I was accepted!! 

Can't say enough about the treatment and wonderful staff at NIH.  Warren, you were right, I'm in good hands!

Val - stage IV (failed interferon, many surgeries, failed temodar, partial responder to ipilimumab but eventually removed from trial)    

http://www.clinicaltrials.gov/ct2/show/NCT01319565?term=11-c-0123&rank=1

Live Laugh Love Nothing is worth more than this day!

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