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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jualonso's picture
Replies 5
Last reply 7/18/2014 - 8:05pm

As i said in the post, i would like to know tbe people who decide to stop the combo before the resistance appear and go through inmunotheraphy to check in the case thag it did not work came back to combo and it continued working.

Thanks for your answers

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tommy90's picture
Replies 10
Last reply 7/18/2014 - 9:23pm
Here is a pic: i57.tinypic.com/atmag9.jpg
 
Yes, the angle is different and yes, the lighting may not be the exact 100% and the jpeg quality may be a bit different too, but this shows the difference. I think the tail (the little blurry brown thing under the mole) has grown and changed. The mole is still very small and I've had it for ages.
 
You cannot see the changes visually unless you have been watching it like a hawk, which I have.
 
I have a derm appt on Monday. I am FLIPPING OUT RIGHT NOW about to cry.
 
can someone reassure me?

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Ginger8888's picture
Replies 3
Last reply 7/19/2014 - 8:50am

Hi everyone, i have a question..I did the 30 day HD interferon back in April with no problems except a little fatigue in the mornings..It didn't work so i am on Yervoy now and did my 2nd does a couple weeks ago and have shoulder and arm pain..My left forearm was hurting pretty back before my surgery back in feb but has eased some since..My left shoulder and muscle in my upper arm hurts like crazy and has been since may, was wondering if anyone else has had this experience?..I had a left neck dissection in Feb 2014 am seems things on my left side are screwed up..My right arm is starting to hurt some also but i believe that's because i'm using it more because of the other side..No other side effects with the Yervoy yet..

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Becky's picture
Replies 4
Last reply 7/19/2014 - 10:48am
Replies by: Becky, BrianP, lbkimball, Phil S

5 years ago, just before his 21st birthday my son Ben was diagnosed with melanoma. His was a very rare oral melanoma ( on his tongue) that had spread to one lymph node. He did a year of interferon during his senior year of college.

Yesterdays petscan showed NED! Feeling very relieved.

I share this in part to give others hope. Oral melanoma tends be be very aggressive with a grim prognosis. I know, in the melanoma world, 5 years does not mean cured, but I feel like it is a huge milestone.

I am so grateful to this board and those that have given support .There are probably a lot of people who never post, but read to gather information and feel connected.

Keep on fighting

Becky

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Nell's picture
Replies 7
Last reply 7/19/2014 - 5:35pm

I  had my second infusion of Yervoy last week.  I am starting with some diahrrea, and I know this side effect is watched carefully...Are most patients able to continue treatment or does this often result in having to stop? I also am wondering if there is a correlation between experiencing side effects and having successful results with Yervoy.Thank you for the help and information.

One voice can make a song; one life can change the world.

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lbkimball's picture
Replies 11
Last reply 7/19/2014 - 11:30pm

 

Hi there,

I know most melanoma patients don't receive chemo, which is the most common scenario for a chest port. But it's virtually impossible for the nurses to find my veins, and now that I've started an every-3-week infusion of PD1, we've decided that spending 30 minutes and many, many pokes is not worth it, and that a chest port shall be installed on August 7.

My question is, can the port be used for PET/CT and MRI contrast injections? Also, it seems surprising to me when people have mentioned using a "numbing cream" - does it hurt to have the port accessed?

Any other wise words would be greatly appreciated!

Thank you in advance,  

laura - stage IV with lots of brain and body mets. 

 

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tasjacques's picture
Replies 2
Last reply 7/19/2014 - 11:31pm
Replies by: Bubbles, Anonymous

Hi Everyone,

I have been in the MK 3475 trial with dosage 10mc/Kg every two weeks. After 6 months I stop the trial temporarily due to side effects - mainly GASTRITIS - COLLITIS and lost 40 lbs after my stay in the hospital. I restarted the trial 11 weeks later and after 4 months I stop the trial again due to SEVERE GASTRITIS that put me in the hospital again for a week, lost another 20 pounds! They say my pituitary might be in trouble, low testoterone levels....DILEMA... continue the trial and deal with the side effects (I don't have any weight to loose anymore...I am 115 pounds)  or stop the trial?!

Have anyone has this type of side effects or similar to this? Any advice will be greatly appreciate it.

Jacques

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Hi all,

Is the above medication known to people on here?

It was reported in a UK paper called The Guardian a few weeks ago.

Regards,

Nigel.

 

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

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tommy90's picture
Replies 8
Last reply 7/22/2014 - 12:49am

Hello all,

 

I went to see my dermatologist today. showed him the mole in question (here is high res picture: http://oi58.tinypic.com/25i0jmo.jpg

He took a look and said "it's so small" and I insisted it had changed. it has...

- gotten darker

- gotten bigger

- the edges you can see are blurry and DEFINITELY GROWING/CHANGING

- had hair growing through it, does not anymore

- gotten "thicker"/more raised

He said "change happens" and I was like 'WTF change does not just happen over the course of 6 months, and if it does, it is concerning!" and he said he would cut it out for me but it would be a voluntary procedure and would charge me $175. I agreed. He said if ANYTHING is atypical, he will refund my money 100% and we will do more testing.

I now have stitches! Yay :) so, it's out. do you agree with my derm, or is he being negligent? I have read loads of stories where people have betted their derms that this IS concerning, and won those bets. And I know lots of you post stories on melanoma.org about how your tiny mole turned out to be mel, so seriously... I can't believe he just said he didn't even wanna cut it out.It changed!! A lot!!!

I find the results out August 6th.

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Anonymous's picture
Replies 6
Last reply 7/22/2014 - 4:10am

Any suggestions?  Someone mentioned a favorite book of their's in the war against Melanoma in the past month or two.  I forgot to write down the title.  I already have some books and basically know how I should eat and live, but I'm always looking for more information/recipes, etc. 

What are your favorites?

Hoping for a cure! 

Terrie

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ScaredV's picture
Replies 7
Last reply 7/22/2014 - 3:32pm
Replies by: Thandster, ScaredV, vlmd1986, 5dives, Anonymous

Hello everyone,

My fiance and I will be meeting with a new surgeon/oncologist in two weeks to discuss him getting a SNB.  Unfortunately, this is happening after his WLE, which was done in April.  We are still hoping that this will give us some extra piece of mind and that it will come back negative.

I was wondering, what questions should we be asking at the consultation?

Are there any other tests we should be requesting at this point?

Also, how invasive is this type of surgery? His original lesion was on his jawline, so I am assuming the nodes will be taken from his neck... Is this correct?  How much time will he need to recover and return back to work?

Thank you so much, I dont know what I would do without this website. 

 

 

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Anonymous's picture
Replies 1
Last reply 7/22/2014 - 3:45pm
Replies by: Leslie'sHusband
Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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BrianP's picture
Replies 4
Last reply 7/23/2014 - 12:14am
Replies by: RJoeyB, BrianP

Live on line seminar today from 11:00 to 1:00 Eastern.  Topics include immunotherapies, targeted therapies, and emerging therapies.

Register Here:

http://www.omedlive.com/en_CA/br/melanoma/refcode=Elsevier-PracticeUpdate-Melanoma-072214%20

(form is for medical professionals but I answered as best I could as a patient and had no problems registering)

Advancing the Management of Patients with Metastatic Melanoma

Live! Complimentary, Online Continuing Medical Education

11:00 AM - 12:00 PM ET - The Evolving Role of Immunotherapy in Patients with Advanced Melanoma

Sapna Patel, MD, MD Anderson Cancer Center

Patrick Hwu, MD, MD Anderson Cancer Center

 

12:00 PM - 1:00 PM ET - Targeted Therapy in Melanoma

Michael A. Davies, MD, PhD, MD Anderson Cancer Center

Patrick Hwu, MD, MD Anderson Cancer Center

 

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ETF111's picture
Replies 42
Last reply 7/23/2014 - 2:36am

 

I am the 55 year proud father of two 38 day old twins (yes 38 DAYS old) and belive it or not, my first, but who is now so scared they will never know me. A few weeks ago, I got a spot on my lung detected in a routine Xray but a clean blood work run. A knot on my groin prompted a PET scan that showed "uptake" at two spots : my groin and one on my lung (there were two actually two spots or places in my lung but only one had "uptake"). They did an aspiration on my groin node last Thursday and got an oral report that it was melanoma while I was still on the table––. Having to wait for my doctors to say exactly what it is and stage, but everything I read says it will not only come back melanoma but Stage IV (because of nodes in two places  - no matter size or number of them) and my future is bleak. I've had no signs of symptoms other than a persistent cough for the last 3 months if I laugh hard. No night sweats, fatgue (still swim a half mile almost every other day) and no rapid weight loss (although, I will admit, since this news last week, I've lost 5 pounds but I hope it is due to stress - quite the appetite supressant ... as well as this eye sty I just got today).

I'm the typical fair skinned, bue eyed countless sunburned Florida kid all grown up. I survived Hodgkins 11 years ago (almost exactly 11 years ago) with chemo and radiation and never expected THIS news. I've had several melanomas on the skin but they always said they got them all and they weren't deep.

 

Anyone else have something like it and is my death as imminent as the studies say?

 

For the first time in my life I feel I've never had more to live for and never been so unsure of the future.

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