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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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!


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 "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.  


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 15
Last reply 12/12/2014 - 4:37am

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!

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!


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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... 


Erin "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.


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Amy Busby's picture
Replies 12
Last reply 1/31/2011 - 11:31pm

Hi all!   Sorry I have not been around much lately.  I see so many (relatively) new people and hate that I haven't been able to share my vast storehouse of melanoma info, lol.  I have been around the block more than a few times.  Now I have failed ipi too.  I decided to first take steps to ease my HIGH pain level and strengthen my hip / femur on the left.  I had good success with the radiation on the right side, so that's what we're doing on the left now.  Lots of fatigue, so not online much lately.

Had a slot lined up for E7080 but who knows if it will be gone in 38 days?  I'd bet that it is.  So I'll be beating the bushes once again hoping a viable treatment option shakes out once I'm done w/ my 10 day course of radiation and passed a 28 day washout.  But first my priority is NOT breaking my hip.  So lots of sitting & people pushing me back & forth to the restroom in my wheelchair.  grrrrrrrr

Anyone with contact info on trial options send them to me at  I'm looking for targeted therapy but often brushed off b/c of prior BRAF study.experience & leptomeningial mets.  But my brain is stable for awhile.

Love and Encouragement to you all,


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

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MaryMary73's picture
Replies 2
Last reply 1/30/2011 - 8:52pm

I found a fantastic article online which features research from dermatologist Dr. Marcia Driscoll, clinical associate professor of dermatology at the University of Maryland School of Medicine in Baltimore.

The only real wisdom is knowing you know nothing -Socrates

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deirgey's picture
Replies 5
Last reply 2/1/2011 - 12:18am
Replies by: deirgey, Anonymous, LynnLuc, skysar, lhaley

Just wondering if anybody knows what MDA tests for with the pathology slides you send them for a second opinion?  My dad is stage IV and didn't have to send pathology slides to the other 2nd opinion he got at the Angeles Clinic.  Thanks in advance :)

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Met with radiologist and neurosurgeon today.  Some of ya'll with experience may can help me solve this delima, as I think Drs. will respect my wishes:

1) A 1mm slice MRI will be done Tuesday to see if any more smaller spots shows up-he suspects it's highly possible.

2) Dr. says if multiple smaller spots DO show up, then I may want to do WBR (whole brain Rad.) 1st to shrink/retard/kill? ALL the smaller spots while bigger spots can be held at bay-  then do cyber-knife on bigger spots 3-4 wks. from then.

3) My concern is the fear that if I don't go ahead and get the 5 mm (plus or minus) two spots on each side of Basal Ganglia and the 4 mm spot on Thalamus, that they COULD? grow during WBR and IF they did they cannot be surgically removed IF they got too big for even cyber-knife to erradicate.

4) Either way I'll be doing both proceedures.  Just trying to weigh odds of which to do 1st.

5)  am I making any sense?  Bottom line:  Have any of you been faced with this delima?  Regaurdless, what would you do?  Just looking for direction from those with any similar experience.

Thanks for ANY input, I'll take all i can get!

PS. did like and feel in good hands with my Drs. at Baptist Memorial in JAX, FL.  Dr. Olson-Radiologist/former NIH researcher, and Dr. Chandler, neurosurgeon.  Both seemed very well versed in melanoma brain mets., however, i've come to a point to trust my own instincts combined with real life experiences of others.  My gut tells me to zap out the bigger and/or inaccesible mets first via cyber-knife, then worry about any smaller spots with WBR, even if 20 under 2 mm spots are found and my grow some while waiting 3 wks. btwn. cyber-knife and WBR. 

Please give me your opinion; if i'm making any sense, that is!

Thanks again & Love to ALL- Grady.

I'm Here for Now, I've got the rest of my life to die; and if so, old age could be overated and God does exist.

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Bombeni's picture
Replies 7
Last reply 2/24/2011 - 10:49am
Replies by: Bombeni, Janner, 2atlascedars, Anonymous, KatyWI

Hi everyone.  I had a sore develop on my neck around Thanksgiving.  I have never had any moles, and for a couple of weeks I figured it was a bug bite.  It is about half the size of eraser, blackish but when I wash sometimes the surface sloughs off and it is red and bleeding.  Oh, early last Fall I lost 25 pounds in a matter of a couple of weeks, having weighed the same thing for 20 years. 

I am a computer dodo.  I have a camera phone and took a picture of this thing.  I wish I knew how to send the picture for others to look at.  I did see a derm. and he is going to excise a very large area on Feb. 7,  I fully expected for him to do a simple biopsy the day I was in his office TWO WEEKS AGO, ERRRR.   But he only works part time now and first appt was Feb. 7 to excise this.  He drew the size and shape of a  human eye which he is planning to take out.  Now, doesn't that seem like a somewhat radical thing, taking that much area and of course will have a scar (he said 6 stitches) before he knows for sure if it is cancer?  I know he is one of the most respected derms in Tulsa, but does anyone feel I should go somewhere else to have a simple punch or shave (I've been studying) biopsy first?  Thank you for any replies.

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lhaley's picture
Replies 6
Last reply 1/30/2011 - 10:00am

I go to a melanoma specialist and a local oncologist. Last visit to Charlotte the PET/CT scan showed a slow growing nodule on the lung. I go in 2 weeks to have another PET/CT.  Meanwhile I went yesterday to my local oncologist. She did blood work and just called.  My liver functions are off.  The ALT is 178. In Nov. it was 40.  The Alkaline Phos. was 140 - she said that was high also, did not catch what it was in Nov. 

I am on Zocor 80mg for cholesteral, she said that could be why, but then why wouldn't it have been high in Nov!!!   I've actually been off for 2 weeks because I also have mastitis and have been on 2 different courses of antibiotics. Erithromycin 1600 mg a day, and then the z-pack. Zocor and Erithromycin do not work well together. No one warned me at first so for about 6 days I was on them together.  I'm allergic to most antibiotics so that was why those were chosen - they didn't work and am being referred to an infectious disease Dr.    Could the antibiotics cause the high numbers??

She is having me come back next week to redo the bloodwork. She never calls, always has her nurse call so I know this is not normal.

Can anyone give me some insight?  I had been able to keep my anxiety in check for the next PET but it's off the charts right now!


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