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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QuietPoet's picture
Replies 0

I just want to thank all the posters and repliers (sp?) on here because reading relevant posts and replies is really helping me tonight as I await the results (won't get them until after the holiday) from two biopsied moles that have been changing, and one with a new skin-colored growth about an inch away from it. I'm suspicious (but realize this may be paranoia)  that things might be moving through my blood stream. Upon reading this, I'm sure you realize why I'm freaking out a bit (six months after initial 1A diagnosis) although the doctor said she didn't think anything of the little new growth. She also felt the moles were probably benign (well, statistically, given the small percentage of people with multiple melanomas that is probable) but was also concerned about the color changes to pink. I showed her pictures from an app/photo lens program I have for my phone that show the difference between September and now. It's pretty different, IMHO. In any case. reading all of your posts helps ease my anxety and puts in me in the place where I realize I just need to go about my business (and get up for the new semester tomorrow). Thank you for your support.

Stage 1A excised, keeping an eye on another; multiple dyslpastic nevi.

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jjk17's picture
Replies 6
Last reply 1/16/2018 - 9:12am

The past 3 months have been an emotional roller coaster to say the least. After having a plan in tack, I was supposed to start tomorrow on my clinical trial, Nivo/Ipi. Got the word today from my Oncologist at Mayo Clinic that the drug company that had my tissue, needed more, due to the fact there were dead cells. There were dead cells, because my tissue samples sat in their lab over the holidays with no-one there testing them. After a long talk with my Oncologist we came up with Plan B. Being treated with Nivo every 2 weeks. I am very stressed to say the least. Looking for positive thoughts on this. Maybe this is all happening for a reason. I just needed to vent! Thanks in advance:(

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jprince's picture
Replies 2
Last reply 1/11/2018 - 5:06pm
Replies by: jprince, WithinMySkin

Hi My wife was diagnosed in August 2017 with a large nodular tumor on her shoulder/arm stage IIIB in August might actually be a III C now with the new staging guidelines that went into effect. Her tumor was fully resected with clear margins. One SLN came back microscopic positive. She then had all her nodes taken out on that side of 37 nodes only one more was microscopically positive. Started clinical trial on 11-16-2017 with opdivo every 2 weeks + yervoy every fourth infusion. PET/CT scan and Brain MRI clear in August except for a tiny 3mm nodule in one lung that ct saw. Before trial started had anther CT which showed no growth in the 3mm nodule but showed a new 5mm nodule in lung. Oncologist did not seem to worried about it. Trial had been going well until just this week when my wife developed a DVT in her leg. Her LDH is still within the normal range but has risen from like 160 to 260 now it is back down to 240. She is being treated for the DVT with Lovenox. My wife also has several other risks to get a blood clot. She is currently on birth control, she has a bi cupsid aortic valve and aortic aneurysm for the the last 18 years and had congestive heart failure and she is moderately obese. I am freaking out thinking that the melanoma has spread because I know that can cause a DVT Dr. does not seem as freaked out as me for sure. Our Dr. is the head of melanoma research at Northwestern Memorial hospital. Anybody have any thoughts on this or am i just crazy. Next CT scan is in 3 weeks. Please help

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MichelleRHG's picture
Replies 5
Last reply 1/14/2018 - 2:12pm

Has anyone had, or heard of, a subq met on the back of the hand? I have 2 small hard bumps. My primary and recurrence were on leg/groin. Thanks in advance for any insight. This worry had got to stop!

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J.bun's picture
Replies 4
Last reply 1/11/2018 - 9:45pm
Replies by: J.bun, Mark_DC, Bubbles

Well - it’s a new year and just had new surgery yesterday.  While recovery from my lymph node removal 5 months ago has been good and still no demonstrable side effects from Keytruda, my PET CT just after Thanksgiving showed a small spot (confirmed by needle biopsy) just next to my original sentinel node biopsy site and just outside the surgical margins from the dissection.  While usually not recommended so soon after a surgery, my docs decided an excision of this area could have additional benefit for me.

My doc was going to put me back on BRAF (which has worked very well for me, buy trying to stay off until - and hopefully not needed - urgent circumstances). But given that the fine needle biopsy showed necrotic tissue with active cells, decided I am getting clinical benefit from the Keytruda.  It will be interesting to learn more about the % of each cell type from the upcoming path report and hopefully my next rounds of imaging will help me take a sigh of relief.

Wishing my best to all of you! 

- J.

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Rocco's picture
Replies 5
Last reply 1/14/2018 - 1:32pm

My annual January scans (CAP CT and Brain MRI) just came back clean.  NED still - since early 2009, IPI responder after 5 doses in total of 10mg/kg.  Full history online for those interested.

I continue to check in on this bulletin board, respond to posts when/if my experience may help someone and never, ever forget how meaningful and supportive many regulars on this board were back when I needed it the most.   

Prayers and good vibes to all in the fight.  Hang in there!

Rocco

Stage IV in 2005, ipi responder (MDX trial) in 2009 and NED ever since.  

Luke 1:37

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CHD's picture
Replies 3
Last reply 1/11/2018 - 8:20pm

Hi all (and Celeste in particular :) ):

MPIP member here for the past few years with previous vulvar mucosal melanoma.  Just had a quick question for you. :)  I love your blog and your posts here are always so informative.  Of course, I am happy for anyone with information or experience to chime in, but I am wondering about lung metastasis and low sodium.  My sodium has been low my last 2 blood draws over the past 3 months.  I actually just noticed and put these two things together tonight:  I have had a chronic cough the past 2 months and kind of a weird dull bronchitis-like chest pain, and my oncologist seemed a little concerned about my low sodium levels and just ordered more blood work on the 28th of December, which came back with low sodium yet again.

 

Google is  never my friend!

 

So, seeing that low sodium can be associated with lung cancers, would you by any chance have any links to decent information about this connection (if any) or any information?  I had to reschedule my visit with her out 3 weeks and this cough is starting to get on my nerves.  Of course, it is also cold season and I have been sick off and on and we all know how easy it is to worry about these things for no good reason except that we have had melanoma and our oncologists have told us our prognosis is poor, right? :)

 

But would appreciate any facts on sodium and melanoma in the lungs, if you happen to have any.  I refuse to Google any further but it is going to nag at me until my visit.  BTW, my BUN is also slightly low.  Everything else lab wise has been normal except high-normal platelets a few months ago.  None of which seemed concerning to anyone until this drop in sodium that seems to be persisting.  Well, and swollen lymph nodes in the groin which prompted a CT and ultrasound of the inguinal/abdominal regions, the results of which are not yet known to me.  Somehow, being almost 5 years out from my initial diagnosis, I am getting rather immune to the panic that used to set in at the least little abnormality, but the consistent low sodium/chronic cough thing has got me kind of on edge the past few days.

 

Hope all is well with you!

 

BTW, any and all reassurance or even shared stories that are less than reassuring are always appreciated.  This group is wonderful and you are all so appreciated.

 

My best to all of you,

Cheri

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lkb's picture
Replies 13
Last reply 1/14/2018 - 10:18pm
Replies by: Anonymous, ed williams, Bubbles, Tracyyy

Many among us might find this discussion of interest.

http://www.nejm.org/doi/full/10.1056/NEJMclde1712449?query=featured_home...

Primary scalp lesion excised in October 2017; SLNB removed and revealed two positive nodes. Stage IIIA.

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Dasupah14's picture
Replies 2
Last reply 1/10/2018 - 9:17pm
Replies by: Janner, lep

Hello guys
3 years ago I had a mole lightening. It lightened so much that it turned completely white. I didn't biopsy and didn't even care. I've read in the internet and read that it would probably be a benign regression. It wasn't suspicious before it lightened. First one half started to regress and then the other one. Should I be concerned about it or should I just stop thinking about it. It doesn't look suspicious now.

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mrsaxde's picture
Replies 6
Last reply 1/12/2018 - 1:35pm

(Sorry for the duplicate post. I accidentally posted this anonymously and didn't notice it until it was up.)

I went to NIH yesterday for the TIL trial screening. Before I started the process two nurses outlined how things were going to go during the day. They told me that after the tests and an exam by my clinical fellow I would meet again with her and with Dr. Sherry, the attending physician. "We won't be able to give you a definite answer today, but you'll have a good idea about whether or not you'll get it."

Dr. Sherry called me an "excellent candidate." But he had two concerns. First, I have a separate thyroid issue, and one lobe of my thyroid has pushed my trachea slightly to one side. He was concerned about whether they could easily insert a breathing tube for surgery. Second, I take methimazole for hyperthyroidism. He told me he needed to consult with their endocrine team to see what they thought. He was particularly interested in whether methimazole has any effect on lymphocytes.

So if my thyroid isn't seen as a problem, it sounds like I'll get in. They said they would let me know by early next week.

-Bill

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Anonymous's picture
Anonymous
Replies 0

I went to NIH yesterday for the TIL trial screening. Before I started the process two nurses outlined how things were going to go during the day. They told me that after the tests and an exam by my clinical fellow I would meet again with her and with Dr. Sherry, the attending physician. "We won't be able to give you a definite answer today, but you'll have a good idea about whether or not you'll get it."

Dr. Sherry called me an "excellent candidate." But he had two concerns. First, I have a separate thyroid issue, and one lobe of my thyroid has pushed my trachea slightly to one side. He was concerned about whether they could easily insert a breathing tube for surgery. Second, I take methimazole for hyperthyroidism. He told me he needed to consult with their endocrine team to see what they thought. He was particularly interested in whether methimazole has any effect on lymphocytes.

So if my thyroid isn't seen as a problem, it sounds like I'll get in. They said they would let me know by early next week.

-Bill

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/11/2018 - 2:04am
Replies by: Tracyyy, lep

Hi Guys/Gals,

 

Is everyone still posting with 2017 Stage III subgroups?

They just changed 1/1/2018.

There are now four Stage III subgroups.

Makes me so confused!

 

Thank you for your time.

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Anonymous's picture
Anonymous
Replies 7
Last reply 1/11/2018 - 8:58pm
Replies by: Anonymous, jennunicorn, ed williams, kabc

 

Hey Guys/Gals,

 

Can Stage III patients go on adjuvent therapy without a complete dissection?

 

Thank you for your help.

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Anonymous's picture
Anonymous
Replies 4
Last reply 1/10/2018 - 9:49am
Replies by: Anonymous, Newmanbell, doragsda, ed williams

I am a 36 year old wife and mother of 4 beautiful children.  I was diagnosed with stage 3b Melanoma in April 2017.  After surgical resection, I began receiving Yervoy.  After 2 doses of Yervoy, I developed hypohysitis (inflammation of the pituitary gland).  After 2 hospital stays and lots of steroids, I am finally feeling like myself again and doing well.  I do not have any longterm or lasting issues from this complication.  Before my second dose of Yervoy, my oncologist told me that with the finding from a new study, he felt like I needed to switch to Opdivo.  I opted to continue with my second Yervoy dose while we got everything straight for me to begin Opdivo.  Then, I developed the hypophysitis.  I really want to go ahead and do the Opdivo.  I want to do everything possible to prevent a recurrence.  At first, my oncologist said no, but now he agrees that I should do the Opdivo.  IHis nurse, however, was very discouraging about me doing this.  I am looking from your opinions.  If you were in my shoes, would you do the Opdivo?  

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WithinMySkin's picture
Replies 3
Last reply 1/11/2018 - 7:55pm

Hello my fellow fighters!

I haven't posted in forever, and my apologies for the absence. Sometimes you have to step away from the cancer thoughts to clear your brain.

But this year, my New Year’s resolution is to become more grateful. Melanoma knocked me down for a bit, physically and mentally, but I’m determined to get back up and be stronger and better than before my diagnosis.

So one of the things I have to tackle is my mindset. I’ve come a long way and I don’t want to lose sight of the lessons cancer has taught me. Melanoma taught me what truly matters – what TRULY matters – and that’s not something you can learn from a book. I may step back every once in awhile, but I will never be able to forget my journey through cancer and the amazing people who helped me along the way.

I just wanted to say a HUGE ‘Thank You!” to every single person on this board. You all helped me through some seriously tough times. The hope, the comradery, the information, the whole thing is amazing. While reading your posts, I laugh, I cry, I hope and pray, and together we weather the storm.

I know not every post is positive, just as every day can’t be an amazing day, but every post and every reply helps someone. I have been that someone. I’m not out of the woods yet (and we all know that Melanoma is a sneaky b!tch) so I may be that person again someday.

But today is a gift. I have today. And today, my heart goes out to every single person on this board. I am so grateful to know that you are all there as a support for everyone fighting the good fight.

Lots of internet *hugs* and wishing everyone a happy and HEALTHY year ahead.

Lauren

WithinMySkin

www.Withinmyskin.com

 

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