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
Anonymous's picture
Anonymous
Replies 4
Last reply 5/16/2013 - 5:44pm
Replies by: Cindy VT, Anonymous, Janner, randallgford

In 2006 when I was stage IIIB melanoma, I had several surgeries including in my brain, and I did interferon high dose for a week.  In 2005 I had a hysterectomy.  I was put on estradiaol. 

My Oncologist put me on another drug called Megestrol, or Megace.  I thought It was suppose to take care of hot flashes,

but apparently this drug stops tumors from growing, mostly in Breast Cancer Patients, but I was given it and maybe my tumors are not growing because of this drug?

I think it would be something to ask about.  Maybe it works with melanoma patients too.

Login or register to post replies.

In 2006 when I was stage IIIB melanoma, I had several surgeries including in my brain, and I did interferon high dose for a week.  In 2005 I had a hysterectomy.  I was put on estradiaol. 

My Oncologist put me on another drug called Megestrol, or Megace.  I thought It was suppose to take care of hot flashes,

but apparently this drug stops tumors from growing, mostly in Breast Cancer Patients, but I was given it and maybe my tumors are not growing because of this drug?

I think it would be something to ask about.  Maybe it works with melanoma patients too.

Login or register to post replies.

Anne-Marie's picture
Replies 4
Last reply 5/16/2013 - 5:57pm
Replies by: MattF, Janner, Anne-Marie

I had surgery on March 13th to check my primary lymph node, which was clear, and to perform a segmentectomy on my left breast after a scrape biopsy performed in February came back as Melanoma.  My mole was a dark brown and slightly grey when it was biopsied.  I am having a slight panic attack as I was applying Vitamin E oil to the scar I noticed a new spot,  sort of round, but extremely light brown along the border of the scar on my breast.  It seems to have some texture but almost flat and I would say it is 4mm. I can't say it is right where the original sight was because so much skin was removed before I was left with a verticle scar.  I have spoke with a few people outside the community and they have suggested photographing it every few days and look for changes before I rush it.  I would just rush in, but I am still dealing with financial issues from my surgery.  I am hoping I can wait till my July appointment.  If there are changes, I will rush in.  But if you were me, what would you do?  Has anyone dealt with this? I was diagnosed with stage 1.  Everything came back clear.  Since then I have had two moles come back mildly atypical.  

Login or register to post replies.

Janner's picture
Replies 1
Last reply 5/14/2013 - 10:24pm
Replies by: Hstevens0072

I got permission from Cigar Bob to post an update.  Dian is finally at home after hospitalization and rehab - back and forth.  She is recovering from a stroke she had as a side effect after IL-2.  She also had radiation on a benign tumor in her back that was causing a lot of pain.  She still has some pain issues and lingering effects from the stroke and the computer is not something she's up to dealing with yet.  Hopefully she'll be back on here after a little more time passes and she has a chance to heal.  Wishing her speedy healing!

Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 5/14/2013 - 1:13pm
Replies by: Anonymous, Janner, POW

Had the original biopsy, full excision, wide excision with 'margins' is scheduled for the end of this month.....It was on the rim of my ear...that skin is so thin anyway, (and not much left since they keep cutting and stretching!)  is there a chance it could have gotten into my cartilage?.... also, they havent mentioned SLNB... should I ask? It is diagnosed at level 2 stage t1A, but they dont have details like exact thickness, or mitotic rate, which I understand are important factors... My doc is only an ear/nose/throat doc upstairs from my primary physician, and he hasnt refered me elsewhere, even with this upcoming surgery with margins... He insists on doing it... I dont want to question his knowledge, but I am worried that he's either not going to get all of it this time either, OR that it has already spread to nodes in my neck (one of my nodes was swollen, he felt it, said it wasnt swollen ENOUGH to be worried.. I dont know what to do :( :( :(

Login or register to post replies.

Anonymous's picture
Replies 6
Last reply 5/14/2013 - 5:51pm
Replies by: Anonymous, Janner, Phil S

I don't get how a person would know to even ask to get tested for a cancer gene?

Login or register to post replies.

Gene_S's picture
Replies 2
Last reply 5/15/2013 - 11:42pm
Replies by: bj63, G-Samsa

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

Login or register to post replies.

THP's picture
Replies 5
Last reply 5/14/2013 - 1:19pm
Replies by: Anonymous, kylez, thrashter, THP

My husband will begin biochmotherapy for the first time next week.  I would love to hear feedback from anyone that has been through this.  What to expect, any tips or advice on the best way to get through this with the least amount of side effects.  We are not looking forward to this AT ALL!  Any help would be appreciated!

Thanks!

Login or register to post replies.

Charlie S's picture
Replies 7
Last reply 5/15/2013 - 8:04pm
Replies by: Charlie S, Brendan, jcmp, POW, randallgford, Anonymous, JoshF

.....but sometimes they do..

Remember that.

Cheers,

Charlie S

Login or register to post replies.

mama1960's picture
Replies 2
Last reply 5/14/2013 - 6:41pm
Replies by: mama1960, NYKaren

Had first treatment today. Nausea not listed as a side effect. I've been throwing up since 20 minutes after I left treatment center. Anyone else have this happen to them?

It is what it is.

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 5/14/2013 - 8:29pm

I havebeen on Zelboraf for 4 weeks.   My doctor started me on 3 & 3.  Reduced to 2 & 2.  Now  2 & 3 but through all my scalp, especially upper neck has itched very much.  Any suggestins?

Phil 4:13 and also "It is what it is"

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 3
Last reply 5/15/2013 - 3:14pm
Replies by: Anonymous, Cindy VT

HI-

I visit this site often and post every now and then but I really have respect and admiration for everyone on here. This is the first place I turn to. I'm posting anonomously due to the embarrassing nature. In the last week or two my bowel movements have been unusual. I say that as everything moves normal, there is no blood and I have been frequent. Anyway, I have noticed a groove or indentation in my stool sometimes. It doesn't happen all the time but it sure has me freaked out a bit. I did the obvious internet searches and come up with nothing concise. In most cases it says it can be an inflammed hemorroid or constipation. It has also mentioned poyps. I'm still a few years away from 50 but I know that doesn't remove the risk. So it had me thinking...can this be a metaststic tumor from melanoma that has settled in my colon. I had my scan about 2 months ago and was all clear. I have now been NED for over 2 years. I was never staged as I had no primary leison found...only a small bump under skin and no lymph node involvement. Anyone out there have any explanation or experience with something like this? I know I should probably see a GI or at the very least go see my primary doc but I wanted to reach out here first.

Let's work for better treatments....for a cure!!!!

Login or register to post replies.

buckytom's picture
Replies 5
Last reply 5/14/2013 - 12:23pm

Working through my doc at Mayo I started the 14 day on/14 day off Leukine treatment on April 23 - last of the first round treatments was on May 6. Did not have any side effects the first week - started to feel it second week - but the worst was the week AFTER i was done with treatments, still feeling very fatiged/achy/headache yet today - 6 days after my last treatment. Does anyone have any experience where their side effects came after their last treatment? Just trying to gauge when I can expect to feel a little better - and what the next round of treatment might be like.

Any help would be appreciated!

Tom

Login or register to post replies.

mike_nj's picture
Replies 29
Last reply 5/18/2014 - 12:53am

Just wanted to post that my yearly scan was clear and now almost 9 years out since progressing back in August of 2004.  Blood tests will be done next week.

Lately, I have been reduced to chest X-rays on an annual basis, after going through all the frequent Ct & PET scans in the early years.

I had my recurrence from a stage 1A lesion on my right upper arm in 2004 after a 5 year interval, and then had 17 nodes removed from my right axilla with 1 macro sized positive node, followed by 5 doses of radiation, followed by 10 shots of the mel43 vaccine in a clinical phase 2 trial developed at UVA.  I started a supplement in 2004 regiment that I pretty much keep up every day with mostly items from the Vitamin Shoppe.  Lymphedema developed in my right arm and I wear a compression sleeve and sometimes I use the FlexiTouch masage machine but my arm garment is pretty much ruined from wear.

 Very few stage 1A lesions recur overall, so I just accepted the "bad luck" as my surgeon pointed out, and moved on.

So, I am thankful to God for this grace period in this stage 3B holding pattern, and I pray for the well being of all fellow patients here and their caregivers

I hope this post gives some new patients some added hope.  Since my recurrence, I see that treatment for melanoma have been changed very rapidly and I pray that more good choices for adjuvant therapy become available to patients that have a higher risk of recurrence and that the treatments for stage 4 melanoma can halt or fully eradicate this disease.

Login or register to post replies.

Hello,

I am stage IIIC since July 2012.  I had a relative small fatty tumor on the underside of my forearm close to elbow.  This happens to be the same side where I had the lymph node dissection late last year.  They have told me the fatty tumor was nothing and has not shown up on any scans.  Over the last 4 days though, I started having a little pain and it began to swell and is tender to the touch.  Has anyone heard of melanoma attaching or spreading to benign type tumors?  I believe I need to have it checked immediately.

Thank for any comment.

Everyday is a Gift so Fight Strong, Live Long

Login or register to post replies.

Pages