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
RGal's picture
Replies 5
Last reply 5/28/2015 - 4:12pm
Replies by: arthurjedi007, RGal, Anonymous

My father started yervoy 2 wks ago and is very unfomfortable.  Nauseous, off balance, not sleeping, not eating.  He's supposed to go back in a week for another infusion.  Is there any medication that could help relieve some of his symptoms in the meantime? He is stage 4, mets to brain and kidney and who knows where else now.  It's so hard to see him so miserable.  

 

Login or register to post replies.

sharebear's picture
Replies 2
Last reply 5/27/2015 - 8:50pm
Replies by: Jydnew, dentholla

Husband had 4 year scan since his recurrence in 2011 and is NED.  He was diagnosed as stage 3(b) or 3(c) depending on the institution.  Although it is always in the back of our mind, it doesn't define us.  We live more appreciatively, laugh louder, empathize deeper, and play harder (we still work too).  Feeling optimistic with the recent medical advances in the melanoma field and wishing you all the best in your journey.

Login or register to post replies.

casagrayson's picture
Replies 6
Last reply 5/27/2015 - 2:10pm
Replies by: Julie in SoCal, casagrayson, Janner, Anonymous

So,  my husband has had multiple primaries and I don't know a part of his body that hasn't been cut on to remove basal cell, recurrent basal cell, or squamous cancers.  The last derm check (4 months ago) was the first time in years that he didn't need any biopsies.  I had hoped we were out of the woods.  

Now, though, he's developed something I've never seen before.  It's about the size of a BB, color between a clear and pearly white, and hard.  It looks to be along an old incision scar, but honestly I couldn't tell you if he had something removed right there or not.  That popped up probably six weeks ago.  Now, it looks like there is an additional lump under the skin right beside it.  I've also notice some other spots on his face that look like nodules under the skin, abou the size of bb's.  I can't say too much to him about any of this because I found the primaries, not the doctor, so whenever I act concerned he gets really nervous.  

Please tell me that these don't sound like sub-q's, or nodular melanomas.  He does have another derm appointment at the end of June (he cancelled his last one because we were going on a vacation and he said "I just don't want to think about it").

Strength and Courage,

Susan

Login or register to post replies.

arthurjedi007's picture
Replies 14
Last reply 5/27/2015 - 9:50am

Just thought someone would like to know what I've learned about phase 1 trials. Basically they are very hard to get into. If I understand right from the several places I've talked to they seem to work the same. Basically they start with usually 3 open slots. If this trial is shared among multiple sites then the slots are shared too. When the last of those slots are filled the clock starts. In about 8 weeks they examine those folks and determine if the trial can continue and what they need to do like raise the dose or whatever. Then 3 more slots open and the process repeats. Sooo very narrow window of getting an open slot. A huge amount of time waiting. Lots of people wanting too few slots. Then we have to deal with some of the results reported might not be that stellar. Like the mga271 med had pretty much no response so they are testing now for the b7-h3 and hoping it will work.

Fortunately I've heard twice this week from NIH in Bethesda so I'm hoping that continues good and it will happen. It sounds like it will. The last numbers I saw had a 50% response rate and 12% cure. Which is incredible but who knows. But I've been on the wrong side of the 85% braf stuff sooo I'm hoping and praying if it happens this will work for me. Fortunately I'm still feeling ok and walking ok. I'm looking forward to it despite what some folks think about it. Dunno yet if it will happen but I'm hopeful. They did say the last step will be il-2 so I would rather do it this way than by itself.

Anyway enough rambling. Just thought I would share about the phase 1 stuff.

Artie

Login or register to post replies.

tcadwallader's picture
Replies 4
Last reply 5/26/2015 - 3:58pm
Replies by: malika, Anonymous, tcadwallader, _Paul_

I am new to this community but I am frantically searching for answers, reassurance, etc.  My 9 year old son has multiple moles on his back and neck.  They have all been checked by our pediatrican within the last year and have "looked good".  Within the last 9 months I have noticed a pink, raised mole that has rigid boarders and seems to be growing quickly on his back.  I took him to the dermatologist and they referred to it as an "ugly duckling" and recommended doing a shave biopsy right away.  I am worried sick and wondered if anyone else has had a similar experience?!?!?

Login or register to post replies.

5dives's picture
Replies 2
Last reply 5/26/2015 - 11:36am
Replies by: Janner, _Paul_

Hello all, 

I was diagnosed stage 3B in June of 2014 and so far have been NED ever since. At my last appt with the derm, she mentioned a mole she wanted to keep an eye on. After that visit, I found an app I've been using to keep track of some moles. It asks you to take a picture of your mole with a reference item (dime or penny) to help measure the mole. I know some of you have been looking for apps to keep track of moles, so I thought I would recommend it here. It's called Mole Mapper and its available for IOS and Android. 

So...I have two moles that appear to be changing. I'm seeing the derm on Wednesday to have them removed, but as many of you have experienced, my anxiety and imagination are out of control. I know what I'll have to go through if they are new primaries, and I'm not exactly eager to relive that experience. If anyone wants to try to talk me off a ledge, I'm definitely open to that. :-) 

My question: Have any of you had an evolving / growing mole that turned out to be nothing?

I'm including the photos from the app just as evidence of how the app works. 

https://www.dropbox.com/s/758fkvmfkuux1qt/filename?dl=0

https://www.dropbox.com/s/wfv2ecx8k08yp4m/filename%20%281%29?dl=0

 

Best, 

Elaine

 

http://melanomadame.blogspot.com/

Login or register to post replies.

Lauren mom to Jenna's picture
Replies 1
Last reply 5/26/2015 - 10:08am
Replies by: Becky

I haven't been on the MPIP Bulletin Board in years, but I am still active with the MRF Gala in the San Francisco Bay Area.  The MPIP was such and amazing support to me when I was desperate for advice and support.  Being able to connect with other melanoma patients was critical to extending the life of my daughter Jenna, and keeping my head above water.  I will be eternally grateful for this resource.  The Gala gives patients/families/MRF an opportunity to meet in person.  If you live in Northern California (or want to visit San Francisco) come to the event!  We are your community, and we want to meet you.   

 

http://www.melanoma.org/get-involved/calendar-of-events/wings-hope-melan...

Login or register to post replies.

AnitaLoree's picture
Replies 5
Last reply 5/26/2015 - 4:05am
Replies by: Squash, Bubbles

http://melanomanewstoday.com/2015/05/15/provectus-synthesis-patent-grant...

This link describes the intralesional use of PV-10 (active agent: rose bengal) for melanoma treatment with complete response for a % of the patients. A.L.

Login or register to post replies.

I don't recall when I subscribed to this weekly email digest, but this week's installment had a couple of interesting articles.

Disclaimer (or as everybody loves to use at work these days: tl;dr): I didn't search Celeste's blog first, so she may already have written about these.

http://melanomanewstoday.com/2015/05/22/researchers-discover-melanoma-in...

Talks about the discovery of a pathway (WNT/beta-catenin) that inhibits T cells from entering a tumor. The article hypothesizes that patients lacking TIL cells do not benefit from immunotherapy as much as those with them. This opens the door for investigating how to block the WNT/beta-catenin pathway to let the TIL cells in.

The second, http://melanomanewstoday.com/2015/02/26/melanomas-addiction-to-glutamine..., talks about melanoma's need for glutamine to survive. They found that melanoma cells die without it.

- Paul.

Login or register to post replies.

Pennie Jo's picture
Replies 7
Last reply 5/25/2015 - 4:08pm

Anyone experienced fever while taking Mekinist/Tafinlar? My sisters fever spiked to 102.6 and wouldn't come down - called doc said it is a side effect of the chemo and a possible sign she won't be able to tolerate this chemo. Had me give her decadron (steroid) for the fever. So far it is bringing her temp down. Doc told us to not give the evening chemo dose - we see her oncologist on Friday. Just wondered if anyone else has experienced this - just so afraid the fever is from something more!!?? 

Login or register to post replies.

Banders's picture
Replies 1
Last reply 5/24/2015 - 5:13pm
Replies by: Anonymous

Hello:

 

I'm stage 4 metastatic melanoma and yesterday (Friday morning, May 22) I had an oupatient excision in my upper right eyelid.

 

Feeling pretty good a day later (Saturday morning the 23rd) with no pain, but I can't open the eye.  The sheet I was given from the hospital didn't mention this topic and a pretty good google search also reveals no inforation about this topic specifically related to melanoma excisions.  

 

So to the point:  Anyone had an eyelid excision?  After how long were you able to open the eye?  I don't know if I should be trying to open it or the opposite.  

 

Thanks ahead of time for any info.

 

Brett Anderson 

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 5/24/2015 - 6:04am
Replies by: Anonymous, Linny, arthurjedi007

I had a SNB a year ago which came back positive for melanoma in one lymph gland and I elected to monitor by ultrasound rather than do the CLND.

I just had my three monthly ultrasound check up and the scar tissue where one of the lymph nodes was taken out a year ago now looks bigger and has some vascularity according to the doctor.

The doctor said it didnt look like the melanoma that was taken out in the SNB and was unsure what it was and has referred me for a Pet scan to make sure.

The doctor said all the other lymph nodes were clear on the ultrasound.

Has anyone else had this situation?

Can you just have melanoma in the scar tissue and if so what does this mean as far as treatment options go?

I so dont want to have a CLND as I live alone and dont have anyone to look after me.

 

 

 

 

 

 

Login or register to post replies.

Brief recap - I had a full, left lymph node dissection in June after reoccurence noted in May, 2011. Primary site was lower, left back in 2006. Initial PET/CT showed highlighted area to muscle in upper left thigh at same time as node detection. Removal of nodes showed 4 of 11 to be positive. Due to area in upper left thigh being positive, I was told I was Stage IV, resected. Within one week of surgery site was infected and I have since been medically packing the area. During this time I have gone for additional opinions.

I have traveled to Johns Hopkins and Sloan Kettering. My staging was noted to be Stage IIIb and Stage IIIc respectively. Johns Hopkins recommends Interferon since I would not be eligible for any trials at this time with no known, measurable disease. I am showing positive for BRAF. Sloan Kettering does not recommend Interferon nor do they use Interferon for any means of treatment at their Institution. Sloan Kettering feels there is not an added benefit with the use of Interferon, statistically, against reoccurrence coupled with the extreme side effects when taking this drug for the year. They would rather me not take Interferon and scan me every 3 months for the first year stating I have an 85% chance of relapse in the first year.

I would love to hear from those that elected to take Interferon and what assisted you in your decision process as well as  hear from those that didn't elect to take Interferon and why not.

Your feedback is much appreciated - I am fairly new to the board, since July, and truly feel the added benefit of being part of such a compassionate group of people, thank you.

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 8
Last reply 5/23/2015 - 7:13pm
Replies by: CourtneyT, secondhalf, Linny, Anonymous, Bruce Davis, Janner

What are the differences between getting treated at a Melanoma center verses Cancer Treatment Centers of America?  

I am weighing the options between Johns Hopkins and CTCA Philadelphia.  I have met patient with cancers other than melanoma that loved the CTCA , buts I am concerned that the CTCAs might not be most up to date with melanoma treatments

Thanks for your input.

Login or register to post replies.

Mhardes's picture
Replies 2
Last reply 5/23/2015 - 1:46pm
Replies by: Mhardes, Janner

Sorry..still new to the site .. not sure if I should reply to the old topic or create a new one . I went to the dermatologist yesterday and had the melanoma superficial spreading removed. I t was a 1cm...before he did it..said that It was th lowest stage above zero.basically as low to ? Situ as it could be. He also said there was no need to see an oncologist and that with the stage its in no one would fault him for not even recommending it..but he knows I have been reading up on it and said if it makes me feel better he will refer me..he said no need though..no though..no one has ever discussed anything past the 1cm as treatment..they did have to do the skin graph so that was fun having two people working..one on each leg.in the end he said all looked great..good thing we got it as it could have been easily mistaken for a bug bite or something else..didnt look like a melanoma..going back in two weeks to take stitches out and j asked him to check me over then we will meet every 3 months for the first two years. I really want to take a breather and stop worrying ..I feel blessed that it elegant the stage it was...am I missing anything or should I be worrying about anything else.?Just want to finalize this bump in the road and move on...looking on my body..see all these other marks...just hoping all done now

Login or register to post replies.

Pages