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

My husband has stage 4 ALM and we are looking for others with this rare melanoma to compare info and treatment by writing to my email maureen038@aol.com. He is negative in the mutations BRAF,NRAS, and c-kit, but is being tested for c- kit expression which can be positive even if its negative for c-kit mutation. He had a 1 cm lung nodule removed in October by Dr. Yang at Hopkins, but now has a 4 mm lung nodule in the other lung. It was 2 mm in January. We are waiting to hear from Dr. Yang for his opinion. Any suggestions are welcomed. Thank you for any help!

Login or register to post replies.

My husband has stage 4 ALM and we are looking for others with this rare melanoma to compare info and treatment by writing to my email maureen038@aol.com. He is negative in the mutations BRAF,NRAS, and c-kit, but is being tested for c- kit expression which can be positive even if its negative for c-kit mutation. He had a 1 cm lung nodule removed in October by Dr. Yang at Hopkins, but now has a 4 mm lung nodule in the other lung. It was 2 mm in January. We are waiting to hear from Dr. Yang for his opinion. Any suggestions are welcomed. Thank you for any help!

Login or register to post replies.

miswod's picture
Replies 2
Last reply 3/21/2013 - 9:44am
Replies by: Janner, natasha

My wife has recently had one of these removed and awaited results from our local hospital.  She has been given another appointment and been told this may require further treatment and they want to discuss options.

She has convinced herself that this means the mole is cancerous. I have been saying that it is probably standard procedure to give her advice and maybe check the wound etc.

Does anyone have experience of how the NHS in the UK proceeds following an excision of such a mole?

I am just trying to establish if this follow up appointment could just be routine or not (it's 6 weeks away!). Obviously, it may be bad news but not necessarily.

Any information would be appreciated.

 

Miswod

Login or register to post replies.

Tina D's picture
Replies 17
Last reply 3/25/2013 - 3:15pm

I went to St Louis today for my first post-ipi PET/CT. Scans show the main tumor shrunk from 3.6cm to 2.1cm. Dr L is very pleased with this response. We will rescan in 2 months. Meanwhile, my endocrine issues are steadying out a little. Prednisone decreased to 20/day.

It is amazing to still be alive, it truly is. I am so thankful. We are rejoicing this fine evening and first day of spring ( even though it is below freezing here in St Louis!). 

Tina

Login or register to post replies.

awillett1991's picture
Replies 3
Last reply 3/24/2013 - 2:01pm

Finished Ipi Dec 3rd, thyroid levels high then closer to normal, bouncing around during and since. Dr says he has seen it before and believes it will eventually settle down to a consistent level - hypothyroid- treated with synthroid. I'm so sleepy during the day, have plenty of energy to do what I want, just sleepy when I sit down for something. No med changes. Nurse offered to run thyroid blood work but I passed since they wont treat it yet anyway, why bother? Anyone had Ipi wear out their thyroid? How long did it take to stabilize?

She really doesn't think it's the Zelboraf either though I am suspicious...

Thanks, Amy

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 1
Last reply 3/20/2013 - 3:21pm
Replies by: Janner

Hi everyone!  I know there is a good chance that nobody will know for sure, but I am really curious for opinions.

I am 21 years old and I am a bit of a hypochondriac.  I have a variety of moles on my body and I have had them since I was a child.  I have always had this mole on my forearm, right below where the crease is where my arm bends.  It is a teeny tiny bit raised.  It appears to be the same size that it always was, except I noticed a dark dot on the right-hand side of the mole.  To be honest, I am not sure if this is new or not.  The mole has always been dark but the dot looks even darker than the mole itself.

Here is what it looks like:

http://oi45.tinypic.com/180hs2.jpg

It is not very big.  It is nowhere near the size of a pencil eraser, which I heard is used to test the "diameter" part of the ABCDE test.

I can't decide whether it's worth it to go to the doctor or not, or just wait to see if it changes.  Three people on both sides of my family have had skin cancer, but at much older ages than where I am - triple my age at least.  I am only in the sun really in the summer and even that's not much.  I know I would have to go to the doctor and then get a referral for a dermatologist.  There is a good chance they might not be taking any new patients.

Opinions?  Thank you so much!

Login or register to post replies.

Clareh's picture
Replies 3
Last reply 4/3/2013 - 2:31pm

I was diagnosed about a 1 1/2 years ago with melanoma.  The melanoma was on my upper abdomen.   I had a wide local excision as well as a sentinal lymph node biopsy.  Lymph nodes were clear. Melanoma measured right at 1mm.  Three months ago my oncologist felt an elarged lymph node under my left armpit.  I had a follow up appt last week and the lymph node was even larger and there was another enlarged lymph node in my right armpit.  I just had a CT scan yesterday . . . now have to wait for my appointment for resutls.  I hate just waiting . . . I am the type of person that likes to gather as much information as possilbe and prepare for what "might" happen (just the way I am) . . . any opinions?

Login or register to post replies.

kkhalsten's picture
Replies 7
Last reply 3/22/2013 - 1:04pm

Well, 7 weeks (1/31) after my lumphodenectomy on left groin area-

3/16 found a small marble size lump on excision- went to the oncologist yesterday- wasn't happy about the measurement, location, and feel of the lump. Now, scheduled for ct scan and from there biopsy. I won't stress until results come back-

The cancer center I'm attending offers chemo, interferon, for stage III (preventive) ..since I'm high risk with my groin lymph node reoccurrence- they did offer me interferon or chemo, but oncologist commented that those treatments have been around for years and they don't really work...thought this was strange..

Now, that I may be facing surgery again...I'm thinking of what the best treatment option would be....no chance to travel to MD Anderson or other places due to insurance/financial reasons. I'm going to have to work with the options/docs/info I have at the cancer center I'm at right now.

Question- do people choose treatment after reoccurrence although pathology is NED? If this more of a preventive option in case mel. cells are traveling through body and unseen on scans? Or do people only choose treatment when results are showing 1 or more nodes are diseased?

I understand these are novice questions- be easy on me.wink

 

 

Login or register to post replies.

vicuk's picture
Replies 2
Last reply 3/20/2013 - 6:58pm
Replies by: NYKaren, Fen

Helen went for her scan last week and the trial drugs (dabrafenib and trametinib) are still working. Lung mets still too small to be measured and hip tumour decreased in size again! So relieved.

Login or register to post replies.

audgator's picture
Replies 5
Last reply 3/21/2013 - 3:27pm

 

About a year and a half ago I had a very low moment in a Publix Supermarket.   I had just finished the complete course of treatment with ipi.  At the follow-up scans we discovered that I had not responded and my mets had grown larger.  A few weeks later I was at the deli counter in Publix next to a young man who reminded me of my son: about the same age, similar height, same beginnings of male-pattern-baldness.  He was holding an infant a few months old.  It struck me that I may not live to see granchildren.   I teared up and almost broke down right there in front of the mortadella.  This afternoon, my daughter-in-law delivered a 7 pound, 5 ounce grandson who I expect to see graduate from high school.  Thank you researchers, BMS, Moffitt, all my doctors, nurses & techs, and of course my newly-expanded family.  And all of you.         Dan

Login or register to post replies.

audgator's picture
Replies 4
Last reply 3/20/2013 - 1:11pm
Replies by: rosa1, Tina D, Owl

About a year and a half ago I had a very low moment in a Publix Supermarket.  I had finished the complete course of treatment with ipi. At the follow-up scans we discovered that I had not responded and my mets had grown larger.  A few weeks later I was at the deli counter in Publix next to a young man who reminded me of my son: about the same age, similar height, same beginnings of male-pattern-baldness.  He was holding an infant a few months old.  It struck me that I may not live to see granchildren.  I teared up and almost broke down right there in front of the mortadella.  This afternoon, my daughter-in-law delivered a 7 pound, 5 ounce grandson who I expect to see graduate from high school.  Thank you researchers, BMS, Moffitt, all my doctors, nurses & techs, and of course my newly-expanded family.  And all of you.      Dan

Login or register to post replies.

bigb0624's picture
Replies 4
Last reply 3/20/2013 - 12:35pm
Replies by: Gene_S, NYKaren, rosa1

I had my 3rd. infusion today and up to now i haven't had any side effects.  Now i have some small rashes and lots of itching.  To those of you that have had the itching, how long does it last (days, weeks, months, etc.) and what helped alleviate it the best. This is an amazing place to go and it has meant a lot to me and i am sure everyone feels this way.

Thanks

Login or register to post replies.

I've had 3 doses of anti-pd1 so far.  After the 2nd dose I started to notice an increase in occular migraines.  I've had them before but not very often.  They also started about the same time I got a horrible rotten headcold.  I still have tons of sinus pressure.  I talked with the fellow at my last appointment but they didn't seem very concerned about them at all.  Has anyone else experienced this?  

So far it seems most side effects have been pretty minimal.   Some fatigue, itchy skin, etc.  

Thanks,
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

Login or register to post replies.

Tim--MRF's picture
Replies 0

I heard from the IT team late yesterday and here is the update on Chat.  We are obtaining an independent Chat program to implement as an interim measure while the vendor for our current chat program works through whatever bug has killed this function.  Hopefully this new program can be implemented in a way that is relatively seamless.  They are doing testing on the new system and hope to have it live by the end of the day today.

Tnis new program may not have all of the functionality of the old program, but at least it will work!

Tim--MRF

Login or register to post replies.

Amanda's picture
Replies 3
Last reply 3/19/2013 - 9:57pm

As we knew from sight, randys tumors that can be measured under the skin, have all decreased in size...about 7 total, including a 12cm tumor in his chest wall.  The tumor along his jaw bone is 'significantly' smaller, and the smaller one that was below it is very tiny, and can barely feel it.  Dr. Ribas is very pleased, and we're hoping the same is happening in his lungs and other mets.  We'll know how that's going after one more infusion, then scans...blood work is all fine, going good!!!  I feel so blessed right now, and pray for continue shrinkage.

_Amanda

"Give thanks in all circumstances"

Login or register to post replies.

Pages