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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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

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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!

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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?

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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

 

 

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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.

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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

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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

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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

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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

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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

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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"

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Anonymous's picture
Anonymous
Replies 1
Last reply 3/19/2013 - 10:12am
Replies by: hbecker

Does it work?  I tried to send a personal message to someone and it didn't see to go through.  Also, if it did go through and there is a response, where does that show up for me to see it.

 

Thank you

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H555's picture
Replies 9
Last reply 3/28/2013 - 10:00pm

I've updated my profile to give more in depth info but here's the summary. I was diagnosed at stage 4 about this time last year with numerous nodules and malignancies in my lungs. prior to that had been stage 3 for about 10 months when an inguinal lymph node was found to be malignant, 16 years after a primary on my calf. had LND, 17 lymph nodes were removed, only the 1 was malignant. had high dose radiation on that area after the surgery. 10 IV Interferon treatments Nov 2011. Feb of 2012 had breathing problems, subsequent scans showed info in first line of this update.  Began Zelboraf and hi dose radiation in late feb of last year. had some dosage adjustments intially, ended up taking 3 and 3. Scans were good until Feb of this year when one remaining node that had been the largest began to growand was joined by a 2nd node of the same size in the same lung. My oncologists locally and at OHSU referred me to a Phase I clinical trial at OHSU and have been in the process of being screened for that, more screening this week but i'm scheduled to begin the new treatments a week from this wednesday. The trial is being conducted at the OHSU Knight Cancer Institute. Title is "EMR200066_006: an Open-Label, Phase Ib Dose Escalation Trial of Oral Combination Therapy with  MSC1936369B and SAR 245409 in Subjects with Locally Advanced or Metastic Solid Tumors. " the Sponsor is EMD Serono, inc.  the drugs are an MEK inhibitor and a combination P13K and mTOR inhibitors.

This trial is also enrolling patients with corresponding breast cancer, Non Small Cell Lung Cancer and Colorectal Cancer.  I'm feeling pretty lucky to get into this trial and will post how it rolls out.

I had hoped to be one of those long term responders to Zelboraf because it worked so quikcly and so well for me, I had very few of the side effects, all of which were quite livable but it was not to be.

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Charlie S's picture
Replies 8
Last reply 3/19/2013 - 10:19pm

May the loading of your IL2 big guns today reach your quarry !

Hang in there and go get 'em !

Cheers,

Charlie S

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darktranceeee's picture
Replies 3
Last reply 3/18/2013 - 11:02pm
Replies by: Janner, darktranceeee

A few weeks ago I was confused, scared and paranoid about a mole/red patch in the sole of the foot, and posted pictures, those threads are burried in the 6th or 8th page of this board. I did manage to get a hold of a dermatologist who biopsied it. Biopsy report came back and I am happy to say that it was plantar hemangioma dilated blood vessels.

I just wanted to update you guys and I heartily thank you for your support, helped me stay calm. Everyone here is so brave with strong mind and thoughts that helped me stay positive. The biopsy waiting period wasn't very easy..

I once again thank everyone who responded to my post. I wish you all the best. I would like to donate something to this board and I will find out more about it here.

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