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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Suzan AB's picture
Replies 2
Last reply 2/1/2011 - 7:42pm
Replies by: Suzan AB, LynnLuc

I received hard news today, mets/tumors in my right lung have grown and shown increased uptake.  I have one node in my left lung and nodes above and below my collar bone.  I have read that complete lung removal with treatment has a better survival rate than just getting clear margins (I have a paralyzed right hemi diaphragm with aceiation (misspelled?)  to the lower part of my lung with a large node sitting in there as well as a couple of nodes in the upper part of my right lung too.).  Seeing Dr. at UCSF on Thursday to discuss treatment.  Any suggestions will be greatly appreciated or stories about treatments that worked.

My best to all...I am kinda of numb right now...

Suzan AB

Presently...One Day At A Time.

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Hi Everyone,

     It has been awhile since I have posted.  I lived here at one point from 1999 until around 2007.  It was my life, my support, my escape, my everything as I walked the walk of lung mets and brain met.  I had just gotten divorced when dx with my brain met and this is where I would come  to laugh, to cry and get opinions.  MPIP was my ROCK and I would like to think all of us were ROCKS for each other.  I remember the laughs we had in chat and at times we had to take a deep breath when a newbie came in.  We all knew each other, we knew our families, we got together in Asheville twice, florida, Vancouver, Camano Island, and Dallas.  I know I personally would never have gotten through those difficult times withoiut everyone here. 

Kathie and Tim, Don W, Dian from Spokane, Angie, Mustang Sally, Charlie S, Kim K, KIm Iowa, The Indiana ladies, Claire and Meghan, Guten Tag, Nan, Leslie F and David, Dan and Jackie T, Kag adn her husband Jim, Johno, John from florida, Bill MTL, Pam and Mike Ok, Claudia V., Mary P, Dawn C, Debbie R, Debbie NC, Barbie Girl, Melissa L, Melanie, Heather who had moved to canada to be wtih the love of her life,Whoha, Bill Fla, M arie and Ed, Wendy, Mr.Ed, Shannon, Amy B., Jackie Doss, David from Richmond and later WI..Carver, Janner, Lennie, Misty, Swatts,Jack NYC,and my friends Bonnie and Chip who are still with me on this journey despite loosing thier spouses......   and oh so many many more.    I love and miss all of you soooooooooooooo much. 

I was dx in '95 and did well until the middle of my divorce...  and 4 1/2 yrs. later.. Wham!!!!!!! Lung Mets..  then ten months later Wham!!!  Brain Met.  I decided to do alternative therapy.  Why?  I knew my options and I knew the survival rate. I PERSONALLY did not want to be sick if I had a short time to live. I had just gotten divorced..  LIFE IS TO LIVE TO LOVE AND TO LAUGH..  and that was what I wanted to do.....

I chose to do Anthroposophy medicine giving myself injections.  of mistletoe, astragalus and formica.  it worked for me.  I also decided to be very very selfish I NEEDED TO TAKE CARE OF CAROLE.  As patients and caregivers we have to do that.  We have to take the time for ourselves , down time and just time for ME..  BE SELFISH,  DO WHAT YOU WANT TO DO.. TAKE CARE OF YOU. 

I know how difficult this journey can be NEVER EVER GIVE UP HOPE and do the treatment YOU WANT TO DO.  YOU KNOW YOUR BODY,  IF YOU DON'T AGREE WITH YOUR DOCTOR, TELL HIM.  I left a doctor because he would not respect I WAS THE PATIENT..  it was MY LIFE. 

Ten years has not been without it's mountains to climb.  I keep putting one foot in front of the other...  In this time I have built a new house, lived in Sanibel Florida and Asheville, NC before coming back to reality and live life at the beach.  I have been blessed to see both of my daughters get married to wonderful young men and to see the love of my life.. MY GRANDSON come to this world.  I alwasy knew a perfect man would come along.. He is 2 1/2 and the love of my life, he makes me laugh, laugh til tears roll down my face, we talk and then Mommy has to be ther translator.  lol.  He makes my heart smile.  I am so blessed.

MELANOMA HAS BROUGHT ME TEARS

MELANOMA HAS BROUGHT ME FEARS

MELANOMA HAS BROUGH TME PAIN,

MELANOMA HAS BROUGHT ME ANGER

MELANOMA HAS BROUGHT ME RAGE

MELANOMA HAS BROUGHT ME FRUSTRATION

MELANOMA HAS BROUGHT ME SORROW

IT HAS ALSO

MELANOMA HAS BROUGHT ME SMILES

MELANOMA HAS BROUGHT ME JOY

MELANOMA HAS BROUGHT ME HAPPINESS

MELANOMA HAS BROUGHT ME COURAGE

MELANOMA HAS BROUGHT ME STRENGTH

MELANOMA HAS BROUGHT ME FAITH

MELANOMA HAS BROUGHT M E HOPE

MELANOMA HAS BROUGHT ME LAUGHTER

MELANOMA HAS BROUGHT ME THE OPPORTUNITY TO MAKE AMENDS AND TO NOT LEAVE ANY QUESTIONS UNANSWERED FOR MY DAUGHTERS.  IT HAS GIVEN ME THE OPPORTUNITY TO SAY GOOD BYE..  SOME PEOPLE NEVER HAVE THAT CHANCE. 

IT DOESN'T MEAN LIFE IS PERFECT BY ANY MEANS.  Just look for the gifts this beast has brought us.  take the time to tell everyone in your life how much you love themi, write them letters for them to treasure, take lots of pictures, make lots of memories.  Hang TOUIGH AND KEEP MOVING FORWARD.  To each of you I wish you love, light and joy in your life

Love and Light

Carole

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Anonymous's picture
Replies 1
Last reply 2/1/2011 - 2:50pm
Replies by: LynnLuc

Good day,

I am new & trying to learn.

Please tell me the difference between a cutaneous tumor vs sub cutaneous tumors.

Thank you for your help.

MiMi

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We are conducting a global study on malignant Melanoma and seek those diagnosed Stage IIIC or IV to participate in one hour telephone interviews.

 

The purpose of our study is to understand the full impact of malignant Melanoma on patients, including the physical, emotional and social impacts.  

 

In the interview we will be talking with you about the journey you’ve been through since receiving your diagnosis, covering topics such as the impact of your condition on your daily life and your experiences with different treatments you may have received. The results will be used to assist in new product and treatments under development for this condition.

 

All information gained is reported anonymous and respects patient’s confidentiality rights.

 

Honorarium is $200 for participation.

 

Interviews may be scheduled between 8AM & 8PM February 16 through February 23.

 

Please respond with interest or questions to contacts below.

 

Kind Regards,

 

Jan Mallery-Groom RN

Clinical Research Support Services

+510-922-9710 / jmallery@comcast.net

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Terra's picture
Replies 3
Last reply 2/1/2011 - 7:26pm
Replies by: Anonymous, lhaley, Sharyn

Hi,

My husband, Derek, had lung surgery on Jan 17 for a lymph node in his right hilum, that had been there for 2.5 - 3 years.  The surgery went well, it was longer than expected because the node had grown into the outer lining of his trichea and windpipe therefore they had to take out his entire upper right lobe and part of his windpipe and trichea which they patched up with lining from his heart and then patched his heart up with a mesh.  He is recovering very well, this is his second lung surgery since progressing to stage 4 last spring with a nodule on his left lower lobe.  We are hoping he is now cancer free, waiting to see the onc and schedule a scan, we know there are suspicious spots in other places so we are hoping for a systemic treatment of some kind.  Several onc from the tumour board meetings in Toronto viewed his scans pre-surgery and all agreed there were too many questions about each spot to think any of the others were cancer - hoping they are right!

 

Thank you so much to Tina (& Tony) from Australia who graciously answered my questions about removing a right hilar node and who suggested we get another opinion from a cardiothoracic surgeon vs a lung surgeon - which we did and thankfully after 3 opinins we found someone who said yes it was resectable!  Thank you so much Tina!

 

Terra

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NicOz's picture
Replies 7
Last reply 2/2/2011 - 3:49pm
Replies by: MaryBZ, KatyWI, NicOz, cindyeh

Won't be around for a couple of days so just wanted to wish you all the best with your surgery. Will be thinking of you and sure you'll find it a piece of cake! Take care, don't over do it when you get home, and get lots of sleep to help the healing along.

Go get 'em, girl!!

Nic

xxx

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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MRFUser2011's picture
Replies 13
Last reply 3/6/2011 - 10:11pm

I am scheduled for VATs next Tuesday to remove a 2.1 cm lung nodule in my lower right lobe.  CT and PET/CT confirm it has doubled in size in 3 months and has high FDG uptake.  I know this surgery can be very straight forward and if all goes well, I can expect a fairly quick recovery.  I would appreciate positive feedback regarding things that might help this procedure go better or make me more prepared (please don't scare me!)  

So if you have had VATs and there is anything that you wished you had known ahead of time because it would have helped you pre or post op, please let me know.  Thanks!

Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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LynnLuc's picture
Replies 2
Last reply 1/31/2011 - 11:10pm
Replies by: Lori C, Amy Busby

Yesterday while visiting my friend in the hospital as she had her surgery to remove a grapefruit mass of melanoma from her intestines...the nurse said somethings about care,insurance etc etc..

She said there have been  many times that during chemotherapy  insurance companies would drop their clients because of the expense of chemo so then they would have to stop treatment and wait until they get approved by Medicare or Medicaid...that really shocked me...the she also said a lot of insurances only allow you so many days as inpatient given a specific  treatment even if the patient hasn't recovered enough...she came right out and said that if the pateint is on Medicare and Medicaid that wouldn't happen to them...that totally was the opposite of what I thought...I thought Medicaid and Medicare would cover the least....

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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ValinMtl's picture
Replies 13
Last reply 2/2/2011 - 10:36pm

My doctors believe that melanoma has now spread to my left groin (confirmed to me tonight)...was always on my right leg before.  The ipilimumab did a wonderful job of 'stopping' my cutaneous growth problem on my leg but now have several new subcutaneous growths on the right leg plus am swollen in the left groin area. Last scan in November showed 20% increase in left groin area and 30% decrease in right.  I have a Pet scan this Friday and - the 2nd CT scan on 21st to see if I am eligible to re-enter the ipi trial.  The only other option I have here is the Dicarbazine and IL-21 50/50..of course, I would like the IL-21  but with 2 arms of a trial you never know where you end up. They have B-RAF trial but I am negative, darn.

I would like a back-up plan if I'm thrown off the ipi trial. Preferably IL-21 or biochem, is anybody aware of a trial that I could possibly be eligible for, having done ipi and interferon. In the meantime, I keep ploughing through the clinical trials.  Many thanks for any help offered.  Val

Live Laugh Love Nothing is worth more than this day!

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MRFUser2011's picture
Replies 10
Last reply 2/1/2011 - 10:54am

I had a CT scan on 1/10 that showed that the lung nodules I have (one in each lung) had grown.  I have been in contact with my previous surgeon and he is very confident he can remove each nodule via VATs.  Today I get the scan results from the PET he requested prior to any surgery.  I normally schedule my scan and result appointments as close together as possible but this time, I had to take first available and have been waiting since last Thursday for these results.  I have done okay with the stress and worry until I did that PET scan and now I am at a point of exhaustion from turning over the possible outcomes in my mind. Have any of you found a way to get around this awful stage from scan to results?  I do meditate and do deep breathing exercises, but it is as if I forget all my "tools" once I get into this place.  I would appreciate any suggestions anyone can offer.  

Shari

Game on. I am going to win! (The thought I had when I heard the doctor say I had melanoma.)

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SusanRice's picture
Replies 14
Last reply 2/1/2011 - 9:47am

Hi Everyone:

My is Susan and my Dad is currently battling Stage IV Melanoma. He's been on and off Dacarbazine for 1 year now, he has lesions in his lungs and liver, and after frequent scans, for the most part his lesions have stayed the same, shrunk slightly, or grown slightly. they have been hesitant to say treatment is working, but his disease has been stable for the last year which is all we can hope for (after reading so many sad stories within this forum).

So far, other than the side effects of the chemotherapy, he's had little to no sickness. The two things that seem to bother him the most are:

1)  pains in his stomach that seem to be diet related - scans have shown he has gallstones and he is going in to have an ERCP next week. He also had an infection late last year that Drs seemed to think was related to a gallstone blockage, causing his liver counts to go out of control. 

2)  the 'night sweats'. This is a new thing for him, and it's gotten really quite bad. it happens most nights, but not every night. I would say 4 out of 5 nights a week. Typically, he wakes up at 3-4am, his t-shirt and sheets are drenched.  

I am curious to know if any other patients also have the night sweats, is this a common thing with Melanoma? Or could it be a sign of something else? I have spent a lot of time on the web (good  and bad) and am pretty sure night sweats are caused by either an infection, cancer, or side effects to a certain type of Rx.

Can anyone offer me and my Dad some further insight into the world of night sweats?

Forever thankful!
Susan

PMA - Positive Mental Attitude Without that, it's too easy to feel defeated by Cancer. Cancer doesn't rule us. We rule it.

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dian in spokane's picture
Replies 6
Last reply 1/31/2011 - 11:33pm

I don't know if Carole will make her way to the board today, but I know that there are many who remember her, since she was such a big help to so many people on this board for so long. Love and Light Carole!

Today she celebrates 10 yrs NED after surgical removal of Brain Mets.

I know that whe followed a holistic approach after her surgery, and has not had a recurrence of her melanoma in all of these years.

While she's not here posting, I also know there there are currently others on this board who are fighting brain mets, so maybe her story will encourage them

I know that she's always been an inspiraton to me!

dian

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Erinmay22's picture
Replies 11
Last reply 2/2/2011 - 6:45pm

I was diagnosed in Oct with Stage IIIb melanoma (upper right back nodular, sentinel node involved - all others under right arm clear).  I had a CT/PET scan done 11-1-10 that came back clear.  I had a CT scan done 1-13-11 in order to try and qualify for a trial.  That scan showed multiple nodules on both lungs.  I'm trying not to freak out too much - but it's hard not to have some (ok a lot) of anxiety over all of this! 

My doctor said the spots are too small for a needle biopsy.  So my options are wait and rescan in 2 months or a different type of biopsy that is a little more invasive (don't remember what it's called).   Has anyone had lung biopsies done?  I'm hoping it's nothing (since the CT/PET didn't pick them up)...  blood work looks ok so far and I feel pretty good (no fever or cough - do feel like I have a bit of  sinus infection though). 

I guess the blessing is that I switched doctors and they did these scans (if they do end up being something) otherwise I wasn't scheduled for new scans until April.

Any thoughts/encouragment/guideance you have is greatly apprecaited.  I meet with a thoracic surgeon on Wednesday to discuss the biospy procedure.  Guess in my mind I'd rather go thru the surgery for the biopsy vs waiting 2 months... 

Cheers,

Erin

www.melanomaandthecity.blogspot.com "people will forget what you said, people will forget what you did, but people will never forget how you made them feel' Maya Angelou

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Nebr78's picture
Replies 4
Last reply 1/30/2011 - 4:31pm

I have been reading a lot about Oncovex.  I have heart disease so cannot take strong chemos.  Does anyone know it Oncovex has side effects.  I am currently having radiation on a lump on my face and chest.  I have stage 4 melanoma.  I am inquiring about a clinical trial in Omaha, ne.  I need something quick as my Cardiologist thinks i have more blockage on front of heart.  That would mean another heart cather and stent(s).  Maybe I am too old to get into clinical trials. I am a male 79 yrs. old.

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triciad's picture
Replies 8
Last reply 1/30/2011 - 4:11pm

Hi All,

I'd love to hear what you all have to say regarding scans. 

I was diagnosed July 09 at 3B.  Surgery and a year of Interferon have been my treatments.   I am scheduled to go for CT of abdomen, chest, and pelvis next week.  My concern is what about a brain MRI?  I guess with all the talk here about brain mets, I'm a little nervous.  I asked my oncologist about the brain MRI, and he said it was not necessary.  Supposedly, all my blood work was good.

My last scans were last February, so it's a full year of not knowing.  What do you all think?  Should I be concerned?

Thanks so much for your advice.  You've been such a great source of support, strength, and knowledge throughout my journey.  It's sad to say, but I trust you all more than my doctor! 

Thanks for any words of wisdom you can offer.

Tricia 

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