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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Sharon93065's picture
Replies 6
Last reply 3/5/2018 - 11:47am

I took glucosamine chondrotite for years due to osteo arthritis and it helped.  Then last spring i dropped it and everything else going into combo treatment didn't want anything interferring with results.  Dec '17 finally weanted off prednisone and i am on 1mg of opdivo every other week. Since weaned off prednisone the joint paint in my ankels, knees, buttocks is pretty bad.  Hurts to walk, hard time with stairs etc.  I asked dr if i could start back on glucosamine and he said yes.  The Meloxicam prescription i have had, 7.5 mg. He said i could take one or two a day but not to exceep two weeks.  Worrisome for kidney damage.  So i only took for 3 days and quit.  Saving them for bad flareup.

Any advice from others on this subject.  Water aerobics helps.  Can't wait for it to get warmer to use our solar heated pool.  Don't want to use ymca pool, too much chlorine.  

My recent mri had two  new small spots show up, will get new  mri in 3 weeks, but everything else from the brain down is good, the two new nodes in my gut, one is gone and the other shrank.  The mass in my lung gone, and even the groundglass cannot be seen.  

Thank you all for your support...and this forum.  

Sharon

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Replies by: aldrichdesigner

Hi all,

I hope everyone is doing well. I posted my story about a week or so ago and the amount of support and response that I received in just one week was phenomenal. It can be a little hard to "get involved" here as it can be very time consuming, a commodity that a lot of us don't really want to waste. Or in my case as with I'm sure many others you end up sleeping that time away unintentionally which is a shame and can be very frustrating. Anyway thank you to all that interacted with my first post.

Now, onto my current issue. If you haven't read my story yet, you can do so here. It explains that I'm a stage 4 patient taking both Keytruda and Zometa due to significant spine deterioration as well as lesions in other areas as well. So, about 2.5 weeks ago, I received my 10th or 11th treatment of Keytruda since starting back in July. We took one break after my 4th treatment because I was having some extreme ill side effects. After skipping one treatment, everything seemed to clear itself up and we went back on the Keytruda/Zometa without issue albeit I was still having a decent amount of joint/muscle/nerve pain. But it was manageable and definitely worth it for the results we have been seeing. I only get the Zometa originally every 6 weeks but we changed it to 9 weeks what will be 9 weeks ago on Friday when I'm due for my next infusion. 

A lot of you that read my story seemed to think that the majority of my pain was coming from the Keytruda though rather than the Zometa and that moving to 9 weeks is probably not going to do a ton. Well, I'm starting to think that you all might be right because exactly 1 day after my last treatment (3 weeks ago friday) I woke up with tremendous joint and muscle pain in my knees and feet that was beyond anything I've experienced to date. I actually thought it was an extreme gout flare up because I do have gout and the joint pain from keytruda is very reminicent of that of a gout flare up. But this time it was in my knees too and usually my gout attacks do not impact my knees, but I've heard it's possible. Anyway, I contacted my doctor and we treated it as if it was gout and got a bunch of anti-gout meds and some antiinflamatories along with a lot of rest and have just been babying my feet. Well, I'm still in a pretty good amount of pain that I'm still using my cane, it hurts to stand up, I can barely bend to pick anything up and stairs, don't get me going on stairs. I've needed a lot of help lately just getting around and stuff. Now keep in mind, some of this is from my back being the way it is but over 3 weeks ago it wasn't this extreme. 

So, onto my main question for you all. Do you think it would be a good idea to skip my infusion on Friday? With the idea that it would allow my body time to "reset" again and hopefully this joint pain subsides back to normal before we start back up again. I know many of you have experienced joint/muscle pain and discomfort on Keytruda before, did it clear up after you went off treatment or does it take considerable time for that to fade? I'm starting to actually get around the past few days although my toes and ankles are still pretty tender but I can muscle through it enough to get around and I really don't want to go in Friday and destroy all of that by getting a treatment and just being in bed ridden pain all over again.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

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Lori Bierschwal's picture
Replies 10
Last reply 3/13/2018 - 4:46pm

HI everyone- 

I am new to this site as far as posting, but I have been reading one's posts for over a month trying to soak up knowledge! I was diagnosed with Melanoma a few months ago- Dec 1, 2018, to be exact. It's funny but you remember dates like those. I was shocked and broke down so much those first few weeks. Then I went on a rampage of digging to understand this. Afterall, Melanoma is so misunderstood. People take skin cancer so mildly. Anyways, my anger today results from how my General Surgeon handled my case. Unfortunatley, I did not go to a cancer center at first. I had a punch biopsy in Nov,2018 from my G.P., which led to the diagnosis. Afterwards, on Dec 12th I was directed to a General Surgeon (did not specialize in Mel). He said initially that after looking at the 1st path report that he wants to do two procedures: SNB and wide excision. You see, I was .76mm Breslow and Clark level 3 with Mito at 1/  he thought it would be good to do the snb. I had already done some research and agreed (even though I was in that phase of .76 borderline for snb.  Moving now to Jan 18th 2018...day of surgeries. To my surprise, as I lay in the hospital room with I.V.'s in my arm an hour before surgery, the nurse informed my that only ONE procedure was on the books for me- just the Wide excision! I was dumbfounded to say the least. I knew the chances were not great that it had moved into my lymph nodes, but we were going to make sure! My surgeon entered the rrom 5 min prior to surgery time and was not even going to tell me of the change of plans! I also knew that the SNB should be done PRIOR to the WLE. But i let him do the surgery ...12 days later I get the call on my path report: it was twice the depth (breslow)...now it is 1.6mm, with a Clark Level 4 !! They said he now wants to do a SNB. I said NO and that I wanted a copy of my path report NOW. So, here we are today, knowing that the mapping part of the SNB could be screwed up because he did the WLE first. But I called Siteman Cancer Center in ST Louis,MO and in two days I will see the leading researcher and surgical oncologist there. He is the tops. I am thrilled to say the least! He is doing his own path report and I will talk and set in motion with him the next steps. Really, I have not even been staged yet- Just 1B according to latest, without doing the SNB. I have been encouraged to learn of so many of you that are doing research to become your own advocate in this fight! We have to! And keep doing it- keep up with the latest developments! And THANK YOU all for being on this site, so now I can recieve much needed encouragment and hope to give some back as well! ((HUGS))!!

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tedtell1's picture
Replies 4
Last reply 2/28/2018 - 11:54pm

Hi;

Just had my first infusion of Opdivo (just Opdivo). Everything went very well, just got a little tired the day after except I woke up yesterday morning and this morning with significant pain in my hips. Really sharp pain. Enough so I could no longer sleep after about 3AM. Has anyone else experienced anything like this? It is till bothering me, but doesn't get any worse or better when I am up and moving around, just moving slower and struggling a bit with stairs. Curious, is this what they mean by body aches? The rest of my body feels pretty okay. Thanks people, as a newbie I have found the information here to be so comforting and helpful!

Thanks again,

Ted

Ted

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ejsprague2006's picture
Replies 4
Last reply 3/2/2018 - 12:25am

I have just found this forum, Have read quite a few of the postings here, and feel I have finally found people that have been in my shoes and might be able to shed some light on MM for me.

In July of last year, during my first physical in many years, the doctor noticed a lesion in the upper middle of my back. He biopsied it and informed me that I have malignant melanoma and was sending me to a surgeon at City of Hope. Three days later I met with the surgeon, who scheduled me for a pet scan, surgical removal of the lesion, which was found to be 1 mm thick, and a second lesion found on my lower back, at the waist, which was found to be in situ MM. he performed a lymphectomy in my right armpit and removed six lymph nodes which all showed negative. Unfortunately, the surgeon is great at what he does, but thoroughly lacks in the communication department. I have asked multiple times for any info or feedback to his findings, and all he would say is "You're okay" or "Don't worry". I never recieved "Facts".

   Since then, I have been to 2 dermatologists, have had eight more nevi removed for being "dysplastic", and 1 Basal cell lesion removed. And to date, I still have not had a single professional explain what my cancer means to, or how it affects, me. "Come back in three months" is the most common statement I hear.  

 All the info I have has been parsed from the internet. But I know that each case is as individual as the person, and there are so many factors that affect it.

  A big question that I need answered is what does it mean to have 2 lesions growing 10" away from each other? Is that bad? Is it worse, or the same as just one? What "stage" is my cancer? And about a million more questions.

I would truly appreciate any help or answers that anyone can give.Thank you and keep up the good fight.

 

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CancerSpouse's picture
Replies 12
Last reply 3/3/2018 - 1:08pm

Hey Cancer Warriors:

Happy to share some good news from John's latest scan results: The remaining tumor on his left adrenal gland has continued to shrink. It's down 10 mm (to 27 x 20 mm) since he started on Keytruda last October.

The left deltoid tumor that had been directly injected with SD-101 as part of a clinical trial remains MIA (missing and inactive) following his last injection in January. The original, canary-in-the-coal-mine tumor removed from the back of his head has also not reappeared. And there are no new lesions. 

Hoping the trend continues!

Side effects have diminished since going off the trial drug. Even the oral ulcers are less severe. Rash flares up that are tolerable. Now we can just focus on regaining his lost weight, about 10 pounds. (So far, I've gained most of it myself.)

Thank you to EVERYONE for your support and advice. You are stellar folks, and I've found this group invaluable.

Fight on!

Carol   

 

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Raeofsonshine's picture
Replies 13
Last reply 3/7/2018 - 4:43pm

As a stage 3 warrior I wanted to share my experience with the ipi/ nivo combo.  I had two rounds of scheduled 4. I lost my thyroid and got immunotherapy induced hepatitis. I also got the rash.  I haven’t had treatment since the very end of December due to these issues and working to resolve them. AKA steroids. In the last few weeks the blood glucose has been up. And up and up. And finally UP. Went in today with the hopes of getting back to treatment, Opdivo only and was told nope, we’re stopping. I now have Type 1 Diabetes.  I can handle the diagnosis. I’m scared to death about the end of treatment. Like I’m not fighting anymore. I hope the combo did enough. 

Thanks for letting me share. I wish you all the best of luck. Keep fighting!! 

 

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as I just found out BRAF 600e . At Stage 3b so an adjuvant therapy. The side effects of these two drugs seem really scary ! Anyone been on them ?

I had a selective neck dissection (unknown primary) 1 lymph node 3.2cm inner partly maliganant outer shell benign other 61 lymph negative. ENT surgeon (oncologists) very pleased said 70% to 80% no reoccurence next 5 years.

Melanoma specialist oncologists not on same page says 40% to 50%  for the next 5 years. The stats on this drug combo seem great but the potential side effects high.

If anyone has had this therapy stage 3 or 4 please let me know how it went.....thanks

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Sharon93065's picture
Replies 4
Last reply 3/3/2018 - 9:24pm

Hi, after my 3rd Petscan two new nodes glowed in my 'gut.' That was Dec 6th. This new Petscan showed one is gone and the other reduced. 1st of January I was put on every other week treatments of 1mg Opdivo. It is working and Dr will keep me on it.  Blood panel is good.  Liver behaving itself.

The not so good news, i had a brain mri June '17 it was clear. My new mri done last week shows two very small spots, as Dr said, quote " I won't sugar coat it,"  so new mri ordered in 3 more weeks to compare it with.  So I lost sleep last  night.  I have read that many of you have had the cancer spread to the brain and are doing ok.  Your postings give me hope. 

A little history, onlty was able to have 3 of the Opdivo/Yervoy combos.  Ending Aug '17. Prednisone until Dec'17.  New treatments Jan '18.  

Also the Petscan showed all the original 6 tumors still gone, and the ground glass in the lung that used to be a mass can  no longer be seen.  Thank you Lord!!

Now worried about the brain.  

Thank you all Bubbles, Jennifer, Ed and others that reply and help me feel like part of your community. We will fight this Beast!!

Sharon from Simi Valley, Ca 

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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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cammeronwall's picture
Replies 3
Last reply 3/9/2018 - 3:25pm

Hi everyone! I was diagnosed and had biopsies June 30, 17... I've gone back for check ups with the oncologist and dermatologist. They say I look good and see you in 4 months. I did not have any in my sentinel lymphnodes at the time of surgery. Do they not order X-rays or scans unless they feel other lumps? My original base of melanoma was on my face. 3.14mm after it had already been removed a couple of times by a general practitioner before I decided to go to a specialist, Wondering what the chance of reoccurrence is. 

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Replies by: Bubbles

Getting my latest results of brain MRI and body CAT scan tomorrow. Also getting results if Braf or not.

Currently stage 3 b and healing from a neck disection with no found primary. 

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Anonymous's picture
Replies 2
Last reply 2/27/2018 - 6:19pm
Replies by: Anonymous

Hello,
On Thursday last week (2/22) I was cooking dinner when my husband noticed a very dark/black mark on my left shoulder blade. I was wearing a tank top (I have been wearing t shirts or sweaters since it's freezing here and never noticed) and the thing stuck out like a sore thumb. All my moles have been light brown. Initially, we thought it was a Sharpie mark from one of my kids, and tried to wipe and scrub it off.
It was then that I realized it was part of me and not "nice" looking, it looked irregular and was slightly raised and not like anything I've ever seen on my body. Plus it was new. It's small, about 2-3 mm. It was foreign and it gave me a bad feeling. Of course I immediately got worried and suspicious and texted my twin sister and asked if she ever got new moles like this. I also asked my mom. They both said no and to probably get it checked out just to be sure.
The following day I called various dermatologist in the area, hoping to get an appointment asap. They all have me at least a 2 week plus date until one had a cancellation for that day. Of course I accepted. I have never seen a dermatologist before and have tan skin and brown eyes. This gave me a sense of security though so I'd often tan without sunscreen and burn occasionally.

The dermatologist told me we better get it biopsied just in case. I asked her if it look bad and she told me "there are we good things about and some bad things about it". She also said the edges looked feathered and had a slight irregular shape.

It is now Monday and I've already scared myself enough looking on Google. I'm having a hard time focusing on anything else besides being anxious about the results. I am in nursing school with two young baby boys and have a hard enough time getting by. She told me they'd have results in a week.

Can anyone help ease my mind by telling me your story and what you think of this? What should I think about it? I know results will come soon enough but I could use some insight on what happened with you and maybe if I should expect bad or good news. Thank you

Also, how do I attach a photo to share??

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Anonymous's picture
Replies 6
Last reply 3/2/2018 - 2:29pm
Replies by: DZnDef, Anonymous, CancerSpouse, jrtufo, marta010, Tracyyy

Hi Everyone,

I found this site months ago during a time where it seemed like my dad was at his worst and we weren't really sure how much time we had left. He has made many comebacks since then, but it seems like for every small victory he has, he gains three more setbacks. I have found myself coming back to this site and searching through forums anytime a new punch to the gut comes our way and I have finally decided to actually make post of my own.

Since my dad's diagnosis, my stepmom has been the one that's pretty handled everything. My dad has never been one to talk about his emotions or any serious matters really so my brother and I have been really dependent on our stepmom to relay all information to us. Communication hasn't always been the easiest in our family, especially for my brother and I when it comes to our dad but as of lately I've been feeling this responsibility that, as the oldest of his two kids and the one who lives closest, that I should be more involvded. Maybe I've just been takng advantage of the fact my stepmom has been taking care of things because I was trying to avoid facing reality but I've noticed more and more the emotonal toll it's taking on her and I'm not sure it's really helping with her attitude when it comes to trying to stay optimistic for my dad. I've also noticed that my dad responds much differently with me and my encouragement than he does with her.

A little background on his history (it's not as in depth as some of the explainations I've seen here, but like I've said, I'm just starting to get a better understanding of his diagnosis, so please bare with me!):

- Spring 2013 he was diagnosed with stage 2b when they found it on his back. At the time interferon was the treatment option available but my dad and stepmom chose not to go that route and instead had the lymph nodes removed? After that procedure,  he was cancer free untl 2016.

- Jan. 2016 he was preparing to have a knee replacement, however, the ct scan that was done pre-op for the knee replacement, actually detected that the melanoma had came back but this time in his lungs, making him stage IV. He decided to go the immunotherapy route and began taking Keytruda.

- Fall 2016 melanoma was found on his forearm and he had mohs surgery to have it removed.

- Early 2017 they were told that the keytruda was no longer working and he tried Opdivo but that made him very sick so he stopped taking that after one treatment.

- March 2017 he met with a melanoma specialist and got approved for a clinical trial (i believe the trial was Opdivo+Yervoy and Keytruda??). He did one treatment but the side effects were too much and actually sent him ICU for about a week during the summer. the trial did have some what of an impact as parts of the cancer had actually shrank but the after math made my dad very weak and he wasn't able to continue with the trial.

- About two weeks ago he had a bump on the back of his head that came back positive for melanoma and now he is wanting to have the mohs surgery again.

My dad hasn't been on any treatment since July 2017. When I've asked my stepmom about it, she has said that he is too weak to go on another trial but I feel like there's got to be something he can do? He has definitely lost a lot of weight and his strength is no where close to where it used to be, but i feel like the ICU experience may have scared him?

On top of everything, for about the past 6 months or so my dad has been dealing with sciatic nerve pain in his back which I feel like has been a major blow to his quality of life. He's stubborn and hates the idea of using a walker or cane for assistance and as of late, his days consist of him just sittng around watching tv. He just got a second epidural done to help relieve his pain so I am hoping this will get him up and moving again.

 

I apologize for rambling, this is the first time I have really shared any of this with people other than close family members and friends and sharing this in a place where I know there are others who can relate has made me feel more at peace.

He just had a ct scan done as part of his 3-month check up and they get the results back on tuesday. My stepmom invited me to go if I wanted to. Should I just be there in support or are there questions I should be asking??

I'm not sure what I'm looking for here, I think I just wanted to see if there was anyone out there that could give me some kind of advice or pep talk of what all I should be doing as his daughter to make sure he stays as encouraged and supported as possible. It makes me so sad seeing him depressed at times, but like I said earlier, I really feel like he responds to me in a different manner than he does with my stepmom and if there is anything I can do to help encourage him to stay motivated to keep fighting, I'm all ears!!

thank you to those who took time to read through my lengthy, first post :) and thank you to those who share your stories - they have provided me with so much information and perspective; It's very much appreciated.

- Laura

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warreri's picture
Replies 2
Last reply 2/25/2018 - 6:45pm
Replies by: Bubbles

The tumors in my leg only seem to be branching off instead of shrinking. I started Yervoy in August and then when my tumors grew they decided to put me on Opdivo as well. Given all that, the pet scan from a few weeks ago shows that all my tumors just grew with more spots since my pet scan in December. I'm just wanting to know the point in immunotherapy treatment where we should be calling it quits because while my dr does think it might be slowing the grow down I seriously doubt it's going to cure me at this rate. So there is is about seven months since my first yervoy injection (obviously I ended that because they don't keep you on it for that long) and six months since my first opdivo infusion (still ongoing) and nothing but tumor growth. 

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