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
LynnLuc's picture
Replies 2
Last reply 2/3/2012 - 1:50pm
Replies by: jag, Erinmay22

Out of surgery

Posted by Brandon Haley.

Mom is out of surgery now and in recovery. We should be able to see her in a couple of hours. Things went fine, and we would call the consultation with Dr. Asher mixed to positive news. The tumor was deeper than was originally thought, but he was able to remove it. He would not commit to saying that it was 100% removed, but he referred to possible microscopic traces left. We consider this a positive. He feels that she will need to have further radiation, but that will be something mom will discuss later when she knows more. Time will tell if there is any lingering speech issues. Mom asked me to post later as well when she is moved out of recovery, and I will after we get to see her. Please keep her in your thoughts!

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.

djdumaine's picture
Replies 4
Last reply 2/4/2012 - 2:50pm
Replies by: aldakota22, Mike N, LaneyMcg, Anonymous

I'm heading to my oncologist today to have a pain under my arm looked at....it's all too familar of a feeling that I had 8 years ago when my melanoma spread to the lymph nodes under my other arm.  Feeling scared and nervous that the beast has returned after 6 years of NED.

Login or register to post replies.

bball's picture
Replies 4
Last reply 2/3/2012 - 10:58pm
Replies by: Gene_S, jag, LynnLuc

anyone doing or know of someone who has been doing Gerson . Very hard to do.?

Login or register to post replies.

Had slnb and wide excision late January at Washington Hosp Center in DC; after initial stage one diagnosis received on melanoma on arm.

Just got pathology and surgery results. Negative on lymph node!!, no trace left after wide area lateral excision.

Initially was contemplating not having the SLNB done (as probability of spread was 5-10% given depth and status of melanoma initially taken out)

Decided to do it for 'peace of mind' reasons. Glad I did.

Though no guarantee of recurrence, I know; it is nevertheless much relieved.

Cant say enough good things about treatment to date.

From initial meeting in Melanoma Center with dermatologists Drs Vanna and Rutterman and surgeon Dr Boisvert to pre and post op care by nurses, other staff at WHC. All staff that I encountered pre/post op were well informed - and most importantly, were excellent communicators. 

Thank you all for answering my preop questions last month and your expressions of support.

 

 

 

Login or register to post replies.

Hi,

Its been a while since I posted an update on me. I just went for a full oncology workup last Wednesday......PET/CT scans, blood work, and clinical exam and a one hour discussion with my melanoma oncologist and melanoma nurse practitioner. Everything is normal, I am NED. NO EVIDENCE OF CANCER!!!! I am working for 5 months now, feel great and LIFE IS GOOD! One year ago we were discussing right leg disarticulation (amputation from the hip socket). I am vigilant, do frequent body skin checks and daily leg checks, looking and feeling for new growths, lumps, bumps etc. I did four doses of Ipilimumab (yervoy) at 3mg/kg last December 2010 to February 2011. I have been NED since my PET/CT scan two weeks after my 4th Ipi dose.

Thank you all for being on this board. This is a wonderful support and information network! I may not post as often these days but thats because I am very busy living life and melanoma isnt taking up all my time right now!

Vermont_Donna, stage 3a, NED

Login or register to post replies.

lhaley's picture
Replies 13
Last reply 2/3/2012 - 4:58pm

Did the brain mapping this morning. Pre admit, and then met with a trial nurse.  I've entered a brain met about a dura lining.  The best advantage was the meeting today with the research nurse who also had been Dr Asher's nurse for several years. She will be in the surgery tomorrow also.   She was so informative.  Went over the surgery step by step.  Answered every questions and relieved both of us.

Everyone who examed me today agreed that the steroids have destroyed my body.  This is going to be an issue a long with just normal recovery.  Hopefully they can remove the entire tumor and the edema will start to leave.  I do realize that surgery itself inflames the brain.  

I am soooo ready for this. I realize that this will take some time but I plan on getting my health back, therefore getting my life back. 

I've asked Lynn to update this site once my son updates my caring bridge site.  Actually I'm sitting in a hotel right now with my husband and my son has flown in and we are waiting right now for the shuttle to bring him.

I hope good news is posted that the entire tumor can be removed (location has been the problem). 

Linda

Login or register to post replies.

chermes55's picture
Replies 5
Last reply 2/3/2012 - 12:38pm

No real updates this week. Went in on wednesday to draw labs and everything looked great. So far im not experiencing any side effect which is amazing compared to interferon. go back in two weeks for more tests. I can"t wait for my first scan, I'm really hoping for the best. Will keep everyone updated when i get more news. As for now i feel better than i have since my surgery in April of last year.Think i might go back to work monday for the first time since June and im actually excited about.

 

Cliff

Login or register to post replies.

http://medicalxpress.com/news/2012-02-scientists-molecular-melanoma-resi...

Looks interesting.  Hopefully this can translate into treatment quicly.

Login or register to post replies.

walesgirl's picture
Replies 3
Last reply 2/4/2012 - 11:13am

Greetings my melanoma clan...I"ve not posted, but I read everyday....I do now have a question...stage IIa diagnosed 9/2011...scalp...2cm around, clean margins, neg SNB...however, felt a hard nodule just on the edge of graft about a month ago...had hit my head there and had a sore, but it cursted, and then here's this...derm is almost positive it's a local recurrence which I understand is so not good...anyone have experience with local recurrence, any encouraging info?? thankyou so much...really

 

beattiesa

Login or register to post replies.

Greetings my melanoma clan...I"ve not posted, but I read everyday....I do now have a question...stage IIa diagnosed 9/2011...scalp...2cm around, clean margins, neg SNB...however, felt a hard nodule just on the edge of graft about a month ago...had hit my head there and had a sore, but it cursted, and then here's this...derm is almost positive it's a local recurrence which I understand is so not good...anyone have experience with local recurrence, any encouraging info?? thankyou so much...really

 

beattiesa

Login or register to post replies.

Greetings my melanoma clan...I"ve not posted, but I read everyday....I do now have a question...stage IIa diagnosed 9/2011...scalp...2cm around, clean margins, neg SNB...however, felt a hard nodule just on the edge of graft about a month ago...had hit my head there and had a sore, but it cursted, and then here's this...derm is almost positive it's a local recurrence which I understand is so not good...anyone have experience with local recurrence, any encouraging info?? thankyou so much...really

 

beattiesa

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 2/1/2012 - 9:49pm
Replies by: jag

We have been interviewed by a drug company because of our the response we have had to their drug for melanoma and they are using it in the news and inside their company for training, etc.  They have asked us to do further interviews with them for the media.  It was suggested to us by one of their crew to make sure that we were given something in return - this was not something we had thought of at all - more about providing hope to others and celebrating our miracle; however, would it be possible or "morally right" to maybe ask for assurance that we would have access to the treatment in the future of we needed it.

Thanks for your opinions.

Login or register to post replies.

Kelly7's picture
Replies 9
Last reply 2/7/2012 - 3:53pm

Hello,

 

My brother,37, was just diagnosed with metastasized Melanoma in his  right lung. He has 3 legions, 2 inside and 1 outside the lung. He starts his IL2 treatment on Monday, February 6th. I have been doing non-stop research on this since I found out on Sunday. I have come across some very interesting treatments to do at the same time as the Il2, before and after.

PectaSol-C to slow down the cancer cells from growing.

Double Helix Water to repair the cells

Upping vitamin D levels to 10,000 iu/ day.

Completely cutting out ALL dairy, sugar, and breads.

Has anyone on this site had any positive results from using alternative medicine as well as IL2?

 

Any advise for him going in on Monday? How can my family support him the best? Is there something we should be bringing to the hospital or something we should avoid???

 

Thank you so much!

Login or register to post replies.

himynameiskevin's picture
Replies 9
Last reply 2/4/2012 - 12:54am

Well, I had a seizure yesterday, apparently one of the tumors in my brain, even though the biggest is only about 1cm, the swelling around it appeared to have disrupted some functions and a seizure occurred. Luckily I was at home, right here. I started to feel, a bit funny, kind of dizzy or out of it. I got up and walked to Brenda, as I was coming around the couch, my vision and ability to stand started to go, I remember telling her something was wrong, to call an ambulance, and I started saying a few panicky, emotional last words, because I thought this was it. It was really scary. Not knowing what was going on, I thought this was the end of me. I heard her yelling my name and everything went black. I woke up disoriented in an ambulance maybe 25 mins later. It wasn't until I was in the ER that I became fully aware of what was going on and what happened. Long story short, it was most likely the swelling that caused the seizure, they watched all my vitals for a couple hours, did a CT scan of my brain, called my doctor and gave me an anti-seizure medication. Then sent me home.

This morning I went to get my mask fitted for the SRS I'll be getting soon. Good news is, it's finally under way. Next Wednesday, all 4 will be getting zapped. The bad news is the  detailed "mapping" MRI they gave me last Friday revealed four new miniscule ones the last standard MRI didn't catch. They're tiny though, too small to even zap at this point. So in four weeks I'll have another MRI and they plan to zap out the remaining four right around then. Though they didn't want to do it, today they decided to put me on a low dose steroid to stop the swelling in my brain, I know it's not good for my immune system and past treatments, but it's kind of necessary right now, they plan to taper me off as soon as possible.

Lastly, tomorrow I'll be seeing an oncologist I haven't seen in a year and a half to be referred to the oncologist who's been taking care of me for the last year and a half. A CT of my chest will be ordered and in about two weeks we'll discuss that and any other possible treatments for me to try out.

Always hoping for the best.. for all of us.

Thanks for reading,
-Kevin

Login or register to post replies.

Maxximom's picture
Replies 8
Last reply 2/4/2012 - 5:29pm

Hello.. I am new here and I need some help. First some personal info. I am a 80 year ols. I had a CT scan in December for a totally different reason and the results came back showing a mass in my upper left lung consistant with lung Cancer.. I never smoked..so this was a shock,,the follow up Pet scan lit up where the mass was along with one node. A core biopsy of my lung came back with Metastatic Melanoma..even a bigger shock..since I have never had any type of skin lesions, of any kind. I met with a Melanoma specialist at OSU, James Cancer Center in Columbus last Thursday. The skin check reveled NO skin lesions of any kind..so the Primary site is unknown. I was given 3 treatment options..Temodor,Ipi or possibly Vemurafenib if I am B=Raf positive. I want to be as aggressive as possible..so I have pretty much decided not to go with the Temodor..the doctor wants to start me on the Ipi as she feels it has longer lasting  efects. I have tried to research as much as I can..and I am wondering if that is the way to go or not. The doctor feels that since the mass in my lung is causing no problems and I am having no symptoms that the Ipi should be the first line trestment. My thoughts are.. that I may or may not respond to the Ipi and it would ytake 4 or 5 months to know that..meanwhile this mass could grow and start to cause me problems..why not start first with the Vemurafenib..and shrink the mass..I would know very quikly..within a month or so if it works..and then try the Ipi (if possible) for long lasting results. Of course I am a total novice at this and the doctor has a lot more experience than I have. I have not built up a relationship with her or a feeling of trust as yst..I  did like her. I have not gone for a second opinion as yet..the nearest place for me to go would be Cleveland Clinic.. but franly when I looked on line..they didn't seen to be to big on Melanoma. I spoke with Johns Hoplkins and since my Son lives one hour away..it is a option. But I would have to stay here in Columbus for trestment. I live alone (daughter near by) I lost my Husband of 60 years 18 months ago and had been a full time caregiver and advocate for him. I caught so many medical mistakes and devrloped such a servere distast for doctors during that time..it is hard for me not to be a "control freak" when it comes to medical issues. My issticts have always been to go where I have to to get the best possible treatment..but the reality is// I am no longer a young as I was or as independent and traveling all over the country is no longer an option.I  really need to get some input here..so many of you have been on the journey that I am setting out on..can you help me? I have a appointment tomorrow at OSU to tell them of my decision...of course if I turn out to be B=Raf negative..then it's the Ippi..I look forward to replies.God bless you all

Joan

 

 

Login or register to post replies.

Pages