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.

Expand/ Collapse Topic
 
Replies By
View Topic
steelergirl's picture
Replies 3
Last reply 3/16/2011 - 10:39pm

I had a PET/Ct scan on Monday, March 7.  Nodules in my left lung popped up on the PET scan.  I have to have lymph nodes removed from under my left arm.  A biopsy will be done.  I will know more after i see the surgeon on the 25th of this month.  I will see my oncologist again after the biopsy.

Login or register to post replies.

LynnLuc's picture
Replies 7
Last reply 3/16/2011 - 10:35pm

March 15...I had my first appointment at 7 AM and the last one at 6:45 PM and left Moffitt at 730 PM...arrived back home at 10 PM...it was a very long day of fast food, apheresis, scans and such!

I didn’t get to see my doc today but I am sure he will contact me with the scan results in the next day or two...he is awesome like that! I usually always get the scan results on the same day...but considering how late everything ran I couldn’t expect it yesterday.

March 16...dragging my butt to work...I still don’t have the energy or concentration I used to have so it is difficult to get myself back in gear.

 I am anxiously waiting on my scan results...really wished I could have seen the doc yesterday...but oh well...It was my choice to have all the appointments on one day so I wouldn’t miss so much work. And Dr Weber doesn’t do clinic on Tuesdays…

 Yes!! Got an e-mail from my favorite oncologist….

 "Mrs. L; MRI negative, the CTs were stable and show no obvious evidence of disease. Congrats! See you in 12 weeks. Jeff W. "

Speechless!..What can I say?? March 26 will be one year NED.

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"

Login or register to post replies.

jrami3's picture
Replies 7
Last reply 3/17/2011 - 7:37pm
Replies by: Janner, jrami3, MichaelFL, Rydell, Anonymous

I am so new to this. I was diagnosed 2 weeks ago with Malignant Melanoma In Situ.. The Surgeon went in and did another excision to get clear tissue. The original tumor size was 6mm x 8mm.  He told me no further treatment would be done.. Everything I have read so far is that is a big size that most In Situ are less than 1 mm... I have searched every site high and low... Does anyone have any insight? I lost my cousin a few years ago to Melanoma at age 32, this has me scared =(  Thank you!!

Login or register to post replies.

I am so new to this. I was diagnosed 2 weeks ago with Malignant Melanoma In Situ.. The Surgeon went in and did another excision to get clear tissue. The original tumor size was 6mm x 8mm.  He told me no further treatment would be done.. Everything I have read so far is that is a big size that most In Situ are less than 1 mm... I have searched every site high and low... Does anyone have any insight? I lost my cousin a few years ago to Melanoma at age 32, this has me scared =(  Thank you!!

Login or register to post replies.

mom3girlsFL's picture
Replies 6
Last reply 3/22/2011 - 11:10am

First let me say thanks for the congrats on my NED!  I am thrilled and will certainly be planning a summer trip with my family.

Second, hmm...how do I go about saying this?  Shame on you for your blog about your insurance company finding a more cost effective route for your radiation treatments by sending you to the crew in Japan!!!  Now, having said that, thanks for making me snort coffee out my nose and all over my keyboard when I laughed out loud at the comment!  Shame on us both!

Now, about the music.  I feel honored, never had a song written in my honor before!  I don't know if you are up to challenge though.  Let me explain...I have learned,  while reading your blog and your musical choices,  that we are either separated by a "few" years or have, clearly, different opinions on music.  Don't get me wrong (don't want to blow my chances of getting a song!) - I can certainly appreciate your talent but would love to see what you can do with the "Bee Gees", "Maroon 5", "Journey" - oh screw it, I don't know...just do your thing, I'm sure I'll love it!

Seriously though, keep on blogging - you got me through a very anxious week!

Laurie 

Do not fear tomorrow, God is already there.

Login or register to post replies.

Replies by: Rydell

This is a good article on Ipi

http://www.internalmedicinenews.com/news/oncology-hematology/single-arti...

An excerpt from the article:

 

When chemotherapy works in advanced melanoma, it works quickly: A scan obtained after 6-8 weeks of therapy will show stability or shrinkage. That sort of response can also be seen with ipilimumab – but in addition, two novel patterns of response have been observed. One involves an initial increase in total tumor volume at the beginning of therapy, followed by delayed onset of stabilization or shrinkage.

Even more strikingly, some patients develop entirely new sites of metastatic disease when ipilimumab is started, with stabilization or shrinkage of both the new lesions and the baseline lesions coming several months later, according to Dr. Carvajal.

Our experience with melanoma: http://emandmichael.wordpress.com/

Login or register to post replies.

Melanoma Mom's picture
Replies 12
Last reply 3/17/2011 - 4:12pm

"Unremarkable PET CT examination from vertex to the skull through the lower extremities. No malignancy detected."

Oh yeah, we're doin' the cancer-free happy dance! The PET scan for our son was clear and while we are still waiting for the CT results, I am going with the assumption that it will be more great news.  Bloodwork is also perfect and hardly shows any effects from the continued Interferon therapy. Next up: routine check-up at Dana-Farber in April, as we haven't been there since December.

Login or register to post replies.

himynameiskevin's picture
Replies 13
Last reply 3/17/2011 - 10:34am

Well' I'm here again for my monthly scans. Flew in last night. I've got about an hour before my brain MRI and CTscan, so thought I'd come up to the library and say hello. Not much new to update on. Still just working a bit, staying busy and enjoying the free time. Still optimistic... but a little anxious about these results, we'll see what they reveal. I talk to the doctors tomorrow and hopefully fly home soon after that. If I get some good news, I'll let you all know soon as I can. I hope everyone is doing ok. I'll talk to you soon.

(fingers crossed)
-Kevin

Login or register to post replies.

Well' I'm here again for my monthly scans. Flew in last night. I've got about an hour before my brain MRI and CTscan, so thought I'd come up to the library and say hello. Not much new to update on. Still just working a bit, staying busy and enjoying the free time. Still optimistic... but a little anxious about these results, we'll see what they reveal. I talk to the doctors tomorrow and hopefully fly home soon after that. If I get some good news, I'll let you all know soon as I can. I hope everyone is doing ok. I'll talk to you soon.

(fingers crossed)
-Kevin

Login or register to post replies.

Ali's picture
Replies 2
Last reply 3/17/2011 - 6:17am
Replies by: FormerCaregiver, KatyWI

I was stage IIIb 4 years ago.  Did 9 months of interferon.  I had one in transit met removed from my leg and they found another in my thigh during a PET scan.  Biopsy confirmed melanoma.  ILI and ILP have been ruled out as possibilites because the tumor is too high up in the thigh.  I have seen many Dr.s, and the surgeons here are recommending the OncoVex trial.  I am a little worried about getting the GM-CSF arm.  Any thoughts on that?  It seems like from what I read some people have the tumor taken out and then get the GM-CSF injections, but is it normal too to take them with a tumor that has not been excised? 

I am 32 with three kids, my treatment goal is a cure. I would do whatever it takes.

Login or register to post replies.

gabsound's picture
Replies 13
Last reply 5/16/2011 - 8:54pm

Hi, I live in las Vegas and was recently diagnosed with stage 3 melanoma (thick lesion with ulceration, 1 positive node). About 5 years ago I had a basal cell cancer on my upper back and have had quite a few atypical moles removed that were moderate to severe dyplasia. My melanoma started as a pink lesion on my leg inside the knee region. Two different PA's from different Dermatology practices saw it and were not impressed. Finally I kept pestering with "what is this" and the edge got frozen because it was getting crusty like an actinic keratosis. At first it got smaller and peeled, but later started bleeding after I picked at it and it never healed. Biopsy came back melanoma.My PA thought was going to be a squamous Cell so did a shave bx (i;ve read that was not good). About 3 weeks ago I had a wide local incision and sentinel lymph node bx. Unfortunately sentinel node was positive with micrometastasis and woke up from surgery with rest of lymph nodes in the groin removed (I knew this was a possibility). I'm healing up fairly well and have tried going back to work part time this week,

My blood work LDH is normal. I am awaiting results of my PET scan. Prior to pet scan I met with my oncologist, who said treatment for pt's like myself, fall in a "grey area". He said the interferon treatments are falling out of favor and said he was recommending a watch and wait for now. He is also checking with an associate who does more melanoma research (dr. Samlowski) to see if there are amy clincal trials I should be in.

In doing research, I see for stage 3 adjunct therapy MAY be offered. Initially I was relieved thinking I could just get back to my life, but find myself doing more research and wondering if that is the wisest choice. The statistics for this cancer are pretty grim. The oncologist said interferon " is like having the flu for a year"-I don't know that I could handle that. Also, from what I have read it doesn't sound like it improves the overall survival rate, but delays return by about 7 months. So you kinda lose a year up front to get some time later-this sounds like kind of a wash.

 

I'm wondering if any other stage 3 patients can comment on if they were given the watch and wait choice and what you decided to do and why.

Also please feel free to correct me if my understanding of what I've heard and read so far, appears wrong.

Sorry if I rambled a bit. It is such a relief to find this site and read these posts from people going through exactly what you are!!

Login or register to post replies.

LynnLuc's picture
Replies 1
Last reply 3/16/2011 - 11:46am
Replies by: KellieSue

Well I had my latest scans on Friday...The news was not good. There is a new mass on my right lung that is pressing on my trachea. This causes me much pain, shortness of breath and coughing.

I was on a Braf-Mek inhibitor clinical trial, however, I was having terrible side effects, mainly daily fevers. I was immediately taken off this trial Friday. Then given 2 blood transfusions since my hemoglobin continues to be very low.

Now we have 2 options....We wait 28 days to start Ipiluminab "Ipi" or if the pain increase they may have to radiate the tumor sooner.
The other option, if approved, is much more complex. Tomorrow the doctors will meet to discuss my developments and see if surgery is at all possible. If so, they will harvest some of the tumor and make an injection and give it to me along with IL-2 and chemo. This will definitely be the tougher route. 

Login or register to post replies.

KellieSue's picture
Replies 1
Last reply 3/15/2011 - 9:36pm
Replies by: dawn dion

Still feeling good. Had a ECHO/EKG today and about 9 vials of blood drawn today. Yikes!

My thyroid tumor seems to have disappeared! It was stable and even shrunk a bit with the 2 doses of ALT and IL-2 but it was still sticking around on my neck. But I can't feel or see it anymore!

Everything looks good, I'll have my first CT in about 4-5 weeks. I'm very antsy, hoping the scan shows how good I'm feeling!

I did start on dicyclen(sp)  for facial rash, I don't have one yet but it's probably coming so they want to try and stop it in it's tracks.

Also another weird thing, I was given a bottle with 32 pills 3 weeks ago so I only took  20 pills up to today but I had to turn my pill bottle in and I got another one with 32 pills in it. Weird right? You would think with what this stuff costs they would want to use it all up before they gave me another bottle. Oh well, I'll do what they tell me. :)

Dr is very happy with how I look and feel!

Kellie(From Iowa) Stage IV on B-RAF

Cancer Sucks. I'm so not done kicking cancers ass! I have a lot of life left to live

Login or register to post replies.

mom3girlsFL's picture
Replies 4
Last reply 3/16/2011 - 3:22am

Got the news today - CT abdomen/pelvis and chest xray all clean!  Whoo-hoo!  Oh yeah, doing the happy dance!

:) Laurie

Do not fear tomorrow, God is already there.

Login or register to post replies.

Pages