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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ncdaniel's picture
Replies 9
Last reply 7/16/2014 - 11:52pm
Replies by: lbkimball, ncdaniel, Bubbles, Anonymous, NYKaren, RJoeyB

Can anyone provide any information on treatments of brain mets with PD-1?  I am aware that Yale University is just starting a study with patients who have brain mets ,  but my question is has anyone seen any prior evidence or prior experience that PD-1 does address brain mets? Any information will help. Thanks, Daniel

Trust in God - Live one day at a time

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ScaredV's picture
Replies 7
Last reply 7/18/2014 - 2:53am

Hello everyone,

I posted about a week  ago explaining my current situation involving my fiance's melanoma diagnosis.  Basically he was diagnosed with a very thin (but large) melanoma on his left jawline back in April.  After the WLE, we found out the melanoma was thicker than they thought at the deepest point (1.2mm).  So now we are waiting to be seen by an oncologist to decide if we will proceed with a lymph node biopsy as his first surgeon did not think it was necessary, but his dermatologist would like to get one done.  We should be seeing the new ongologist/surgeon in the next two weeks.

The other day, I noticed a very small lump on my fiance's collar bone.  The lump was on the right side right where that 'U' shaped dip is underneath his neck. It is very small, smallar than a pea but I did notice it. When I felt it, it felt hard.  I don't ever remember seeing it there before but my fiance said that it's just his bone... I don't agree with him, I can feel and see this is a small lump.  He has also had a cough for the last three weeks that is left over from a cold he had before.. maybe it's something from that? 

My question is, should I be worried about this?  Ever since I saw it, my anxiety has gone through the roof but I don't know if it's just me being paranoid or is this is something that should be taken seriously? I feel like it doesn't make sense, as his melanoma was on the left side of his face and this lump is on the right side of his collarbone.  Does anyone have any advice for me?  Thank you.

Also, can anyone give me advice on how to calm my anxiety through all this? I am having a very hard time with it and I have never suffered from anxiety before all this.  

Thank you so much.

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1derdog's picture
Replies 4
Last reply 7/18/2014 - 2:58am

My husbands has stage 4 melanoma in his lungs.  He has been on a clinical trial for 21 months now.  The tumor is increasing in size and now the doctor tells us he needs to get on a blood thinner (fragmin) because his arteries are clogging.  He said this is common in cancer patients.  Can anyone tell me if this is so wing they have either heard of or have experienced themselves.  I'm very concerned.  Can this be treated?

any suggestions would be very appreciated. 

 

Thank you 

1derdog

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AZ_Gal's picture
Replies 4
Last reply 7/18/2014 - 1:26pm

Is it me or is this kinda ironic?

 

I get melanoma from too much sun, have it removed, and now I am very careful about sun exposure. Now 3 yrs later I end up with crazy low vitamin d....

Annoying!

Anyone else have this issue? Is it common?

 

Thanks!

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Erica A's picture
Replies 4
Last reply 7/18/2014 - 1:31pm

I haven't been on the board in a long time, but a friend was recently diagnosed and so I wanted to do an update for hope.  My husband, Ken, is 9 years NED from stage 4 melanoma next month.  He continues to not just survive, but to thrive.  I won't go into treatment detail because all the treatments are different now than the bio-chemo he had at the time, but I just wanted to remind everyone that you can survive stage 4 - Ken proves that there is reason to hope!! 

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http://www.healio.com/hematology-oncology/melanoma-skin-cancer/news/online/%7Bbb5a811b-8d08-4cb6-bcaf-b3f05924916d%7D/lymphovascular-invasion-regression-novel-prognostic-factors-in-thin-melanomas

"median time to local recurrence was 79 months, the median time to regional recurrence was 78 months and the median time to distant recurrence was 107 months"

 

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RJoeyB's picture
Replies 9
Last reply 7/18/2014 - 4:55pm

Is anyone else finding the new "social media toolbar" (buttons to post to Facebook, Twitter, etc.) that's been appearing on the left-hand side of the site for the past several days or more to be extremely distracting and disruptive?  I know that I'm sometimes using my older laptop with 1024x768 resolution, but that isn't an unheard of resolution, even today, and the toolbar encroaches and overlaps some of the text down the left side of the page.  And frankly, I don't think it's necessary or wise to make it so easy to quickly share the posts, specifically here from MPIP over to Facebook, Twitter, Google+, etc.  

I'm using Chrome, but I see the same thing in Internet Explorer.  The bar appears to run along the bottom of the page in Safari on my iPad, but when I'm writing a post, it pops up in the middle of the page where I'm typing, so it's even more disruptive there.

I don't know if there are site moderators or administrators who might be reading this, but is there any way to at least get rid of the toolbar completely within MPIP?

Thanks in advance,

Joe

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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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