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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TexMelanomex's picture
Replies 3
Last reply 11/9/2017 - 3:07am
Replies by: Anonymous, iskitwo, obtu.bt

Hi Warriors, 

I wanted to post my results thus far in measurable data. As stated in the thread topic this is a single case study (of me). The only measurable lesion thus far (without imaging) is the large node under my left clavicle, as I am not due for my first round of treatment CTs and MRI until January. I think the results are interesting, positive, and to some degree not fully explainable except by speculation (at least as far as science is concerned).

Diagnosis graduated from Stage II to Stage IV on 9/21/17 (mets to lymph nodes in shoulder, abdomen, and porta hepatica (liver drainage).

Pre treatment screening 10/5/17 the tumor (clavicular node) measured 40mmx45mm, yes it was a big old knot and looked like a horn growing out of my shoulder!

Treatment day 1 10/10/17 (no treatment adminsitered yet) the tumor measured 34mmx41mm.

Treatment day 2 10/31/17 (measured prior to second treatment which occurred later that day) it measured 34mmx39mm.

So the interesting part of this data is that the tumor began to shrink prior to any treatment and has continued to shrink with treatment. It is a good partial response and very uplifiting for the decrease once treatment started...but what about the pre-treatment shrinkage??

Now, I don't hide the fact that I am a Christian and my faith is strong (it hasn't always been easy to keep but it has sustained me in overseas deployments to some nasty places with "inhospitable hosts"). Don't worry, I'm not here to evangelize, and in full disclosure I consider myself a "rough around the edges" Christian who cusses more than he should, doesn't go to church every Sunday, and is a very imperfect human. I also don't hide the fact that I have completely altered my diet since just prior to 10/1/17. I know neither of these things (faith or diet) are going to satisfy the empirically minded people on this board as an explanation BUT there aren't too many variables remaining other than spontaneously partial remission, placebo effect or anticipatory effect, or some other metabolic/immunologic process yet to be understood. I will say that even the docs at MDA scratched their head a little at the initial decrease in tumor volume and they certainly weren't convinced my diet had much to do with anything. My labs were relatively unchanged, no sudden surge of immune function noted (and being part of a clinical trial my labs are collected every week for two weeks, then one week off, wash, rinse, repeat (all at the same lab) and all values have remained essentially unchanged except for a slight overall DECREASE in WBC.

What I am leaning toward here is don't discount the positive, the possibilities, don't lose faith, don't convince yourself that you can't win or at least put up one hell of a fight. I don't know how the war ends for me, but I do know that I will fight the battles with all I have and so far the good guys are winning.

Stay.In.The.Fight Warriors!

Tex

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Spl25's picture
Replies 6
Last reply 11/9/2017 - 12:41am
Replies by: Casitas1, Spl25, Bubbles, TexMelanomex, Anonymous

Has anyone had really late onset of rash/blistering etc.? Any idea why now or what this means as far as treatment goes?

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muphinn's picture
Replies 5
Last reply 11/9/2017 - 7:23am
Replies by: Ed Williams, Anonymous, muphinn

Well, hello!

 Wide excision and one lymph node removed. Got copy of inital path report from mole removal done Oct 26.

Results ...

Type  Superficial Spreading with Nodular Growth

NOT ulcerated

Depth 1.5mm

Regression not identified

Mitoses 7

Tumor Infiltrating Lymphocytes present, non-brisk

Path code T2a

 

Any insight on these results appreciated and a thousand thanks for the wonderful responses to my first post. 

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obtu.bt's picture
Replies 11
Last reply 11/11/2017 - 6:15am
Replies by: obtu.bt, Mark_DC, Mat, Hukill

Hi Folks,

 

I am on Yervoy and got 3th doses and also got 23 sceances of radioration (4800 cGy total). RT has finished about 15 days ago and 3th Yervoy also taken 2 weeks ago.

However diarrhea keep going for 3 weeks now and not stopping. My onco keep going with Loperamid but in my opinion it is not working at all. I am still going 8 or 9 times per day.

do you have experinces with it, awaiting your feedback.

Thanks

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Simon99's picture
Replies 6
Last reply 11/7/2017 - 10:30pm

Ok so its not much but its our first forward step.

We actually got somebody face to face. A private hospital The Spire Southampton only a first consultation but a least the guy was down to earth, positive about radio therapy and wishes to talk to a radio physician. 

I asked how long till we hear and he said it should be quite quick.

I wont waste words at this point because there is litttle else to update - but thank you all for the inspirational posts and information you shared to help me get this far.

Will update as things evolve. 

Simon 

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/7/2017 - 4:17pm
Replies by: Janner, Melissa M

My anxiety is off the chart waiting for this biopsy to happen. It was scheduled for November 15 so I figured due to the upcoming holiday it would be several more weeks before I would get results AFTER the biopsy. I emailed my dermatologist this weekend asking her if there was any possible way to move it up, explaning my anxiety situation (and my past history with anxiety). She responded that she does not have anything available on her schedule before the 15th, but she spoke with her colleague who is a mohs? surgeon and she has an opening this Thursday if I would prefer to switch. My follow up would still be with my dermatologist, the biopsy would be with the colleague/surgeon.  Not knowing what all of this means but knowing how my anxiety is affecting me, I'm inclined to take the open spot on Thursday. This is a biopsy of my nail matrix, I will have the nail removed and the skin underneath it biopsied. Does this sound reasonable? Forgive my ignorance, but will the surgeon know what to look for as far as the biopsy goes. Will this be a reliable biopsy? 

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MelanomaMike's picture
Replies 3
Last reply 11/9/2017 - 1:36am
Replies by: dbJoe, Jahendry12, Melissa M

ok, im not "all" the time but, let me tell you a little secret, since my first diagnosis, and my very first "Scan", whether P.E.T, CT, MRI etc, i found out i was "claustro Phobic". No biggy right?, i yelled "let me out this mutha lover!!' & we rescheduled me with Adavans to take for my new found "anxiety" problem, {this was 2008}. Since then, and after quite a few thousand scans since, ive remembered to bring my Adavans like clockwork, i would remember those then i would my wallet!..well, today was my first of three scans to be completed by Nov 15th, today was the Bone scan & i forgot my Adavans! i tried, believe me i did, i got on the table & started huffin' & puffin"..im so pissed! & because it was late in the day, gettin some was not an option, its rescheduled for next Wed, ill call each day till then for posible "cancel's" by someone...I HATE MYSELF right now!...thanks for letting me get this off my chest...

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Anonymous's picture
Replies 9
Last reply 11/10/2017 - 6:05pm
Replies by: Anonymous, jetdoctor67, Melissa M, Nemesis, Jamie1960

Hello - 

I live in San Diego, CA and a week ago underwent my WLE and SNLB for my Stage 1B Melanoma which was located on the left side of my lower back. It has been 10 days since my surgery (October 26th) and I am still waiting for my pathology results. I would love to communicte with other patients who are or have been in a similar situation as myself as I still cannot believe I am going through all of this. I feel as if any day now I am going to wake up from this stressful nightmare.

The thing I am struggling with the most right now is the mental agony of waiting for my results and the unknown. Have other people waited this long for their results as well? What is the % chance of a 1B Melanoma spreading to the Lymph Nodes? My lymph node that was removed was under my left armpit. Have other people had a result of spread to lymph nodes they can tell me more about? Is there a local support group of Melanoma patients in San Diego that anyone can refer me to? If I, god willing, receive a clean pathology report, do you recommend being under the strict supervision/care of an oncology doctor or is being under strict supervision with your dermtologist sufficient?

This has been such a difficult time in my life. I am 47 years old, have two children, ages 13 and 14 and have been married for almost 16 years. I am praying for a good outcome. 

 

Thank you!!

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muphinn's picture
Replies 7
Last reply 11/7/2017 - 1:53pm

Fair skin, green eyes, hx of 2 severe, peeling sunburns in childhood, VERY moley......and then there are the tanning beds and a couple of winters in Central America with the BEST sunshine ever. So yeah, I am guilty of contributing to this disease and I will deal with whatever comes my way.

Took way too long to get to my question/issue....it is about telling people I have melanoma. You know, like your uncle Henry who smoked 4 packs a day for 40 years and he gets lung cancer and everyone says, well, duh of course.

How do y'all deal with that? 

BTW, Wide Excision and SLNB tomorrow.

Thank you and I expect you will get sick of me sooner than later!!!

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Macky's picture
Replies 1
Last reply 11/6/2017 - 10:38am
Replies by: Anonymous

Hi,

I posted about my dad last year and we’ve been down a long road since then.

Briefly: We in U.K. He is 70yrs old. Nodular Mel on tight forearm. Clark level 5 - at least 6mm deep. Had WLE July 2016. By December 2016 large underarm lump. Had complete lymphadectomy March 2017. 22 out of 22 nodes found with Mel, mostly necrotic and matted together. Mitotic rate - 31 (as high as i’ve Read about). Due to mass they couldn’t get clear margin and seems Mel had already infiltrated pectoral area. 

So sure enough new mass found in scan at collar bone. No surgery possible so started Keytruda September. He’s just had 4th infusion and side effects are getting progressively worse. After this one couldn’t get out of bed - really dizzy & sick. Taking longer each time to recover. 

It feels like i’m watching him go and i’m getting more pessimistic about his chances every time I see him. My question - I don’t know - is it poss to get good outcome from Keytruda with such aggressive mel?

Thanks for any replies.

 

 

 

 

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Ridingaroundwith27Jennifers's picture
Replies 15
Last reply 11/9/2017 - 2:05am

Hi All,

I'm currently in a holding pattern.  On nivo maintenance.  Hoping my brain tumor doesn't return and waiting for the last two tumors to shrink to non-existence.  While I'm waiting for the latest brain MRI which was on a Saturday (terribly stupid of me cause the earliest I can get the results is now Wednesday) and the next CT scan of my abdomen I've come to a realization.  

I had been waiting to return to myself.  I was waiting to return to running, to return to being fit and looking nice and putting in 100% for the others around me.  Well, that just isn't happening.  My foot is still numb - I have four months before I'm a year out from the craniotomy so I'm told to be patient however I'm starting to think the new me just has a numb right foot.  I'm still not exercising.  I just can't motivate to do it.  I'm still focused more on myself than I am on others.  Not to mention my hair.  I'm happy it's growning back post radiation however the two different lengths is quite a challenge.  Think the worst mullet you have ever seen and times that by 10.  A couple of days I wore a winter hat just because I couldn't get it to stop sticking up in the middle and I was late for work.  In all fairness I live in New England and so a winter hat in October/November isn't that ridiculous except that it happened to be 74F and 70F the days I was wearing the hat.  That's NE weather for you.

In short.  This is the new me.  A bit selfish.  A little shallow.  Stuck in a holding pattern.  Tired all the time with weird hair.  Completely unfit with fat roles.  Wanting the NED diagnosis to be the next thing I hear.  Knowing it is most likely years away.  The DRs keep telling me it depends on the next MRI.  It depends on the next CT Scan.  They want to keep me on nivo for another two years.  I've started back at work full time and I've started driving again.  One of the toughest parts is juggling the schedule.  I'm having a terrible time fitting in the infusion appointments with work.

Thanks for listening to my rant.  Thanks for understanding.  No one else really gets it.  So thank you all.  Your support helps me keep going, keeps me positive and makes the waiting bearable.  Anyone else adjusting to the new normal?  Tips appreciated.

Thanks,

Jennifer

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 11/6/2017 - 2:08am
Replies by: MelanomaMike, Anonymous, Janner

Is it standard for the dermatologist to perform the biopsy or should it be a surgeon? It seems I have read both here and I’m wondering what the difference is? I’m scheduled for a biopsy on November 15th with the dermatologist. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/5/2017 - 10:52am
Replies by: Bubbles

I’m new to the forum so don’t fully know how it works. I’ve sent two emails to members here and haven’t received a response . I requested a copy be sent to me and didn’t get that either. Are the emails going to the email I registered under? Is there a special in box on the forum I don’t know about? I’ve checked spam but nothing is appearing there, not even the copies I sent. Thanks for your help.

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MelanomaMike's picture
Replies 5
Last reply 11/6/2017 - 11:52pm

Hello brothers & sisters, just checkin' in with ya's to give you all my latest "happening's" if ya will. ok,as some are already aware , my Oct 23rd date for surgery was canceled because now theres to many tumors, so he ordered a biopsy CT Guided to my left lung, did that,  results show it is Melanoma, we kinda already knew it by the shape {nice & round balls} so, im NOT possitive Braff so i qualify for Pembro! iv read & heard so much good results from folks like you all, i brought it up to my Oncologist and shes behind it 100%! {i saw her last week} so, shes ordered test's, CT {with bone scan}, MRI {w/brain focus} and PET plus deeper blood work, all has to be completed by Nov 15th {2017} so as our brother Tex calls it, "Lets Get This Party Started"!!..im so ready to start this fight once & for all guys, ive been doing this like some of you for a awhile now {since 2008} with 6 surgeries to date & them damn tumors keep coming back! so now its time, therapy is eminent, my boots are laced up, my veins are ready for IV's & my Sony Walkman {MP3 player} is loaded with fight songs! for those of you who dont know me {iv been a member only a few months} my Melanoma has worked its way from my left leg {including groin lymphnodes} all 6 surgeries in left leg,now its in both lungs, the right has quite a few tumors,  little ones are "mm" in size and the one bigger one is now 2.4cm. My left lung has quite a few little ones "mm" in size, and the bigger one is now 1.4cm. So, time is of the essence & its on! im still ever thankfull of you guys & gals here at MRF, we WILL WIN THIS FIGHT! THROUGH OUR SHARED TREATMENT, WE WILL HELP TO FIND THE RIGHT COMBONATION FOR A CURE! love ya guys...Mike

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warreri's picture
Replies 4
Last reply 11/8/2017 - 3:05am

I completed Yervoy today. My oncologist started coupling it with Opdivo the last session and for the one today too. Now I just have to finish up Opdivo but I'm pessimistic because the tumor on my mid shin stays the same size and while the other one sometimes looks smaller very recently it seems not not only have gone back to its original size but specks of tumor have formed around it too. Today my oncologist said that it sometimes takes 8 weeks to take effect but i've been doing this for over 8 weeks with no lasting difference. I've been dealing with this since I was 17 and I'm 22 now. I want to be done with it for good. 

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