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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Bradley75's picture
Replies 4
Last reply 5/4/2017 - 4:09pm

A brief background before I share a poem that my 12 year old daughter wrote for her 7th grade English class assignment.  I was first diagnosed in 2007.  She has watched me progress from stage 1 all the way to stage 4.  She has been there for all the surgeries, radiation, hospitalizations and now immune therapy.  She has seen and been a part of all of this.  Her poem came as a shock to me and completely blew me away.  I feel compelled to share it with all of you. 

Cancer is a Journey

By Anna Bjorklund

Cancer is a journey with only two possible endings.  It's unpredictable and deadly.  The path is narrow and bending.  It's so easy to give up, and full-on quit pretending.

To fight it you need endless strength and impossible perseverance.  For it's a road trip of great length and a tragic, cruel experience.

The first sign of it is shocking.  It's something you just can't understand.  Not until you hear death knocking, do you know what's truly at hand.

But by then it's much too late.  Now you know you're out of time.  The journey is all done, you're Home.  There's no more ladder left to climb.

There are many rule to this battle by which you must abide.  First, you must give up your normal life and set your dreams aside.  Because deep inside, you know someday, there'll be nowhere left to hide.

It's tiresome and pointless, killing something you can't see.  For every puzzle piece restored, twice as many disappear.  Those who have lived this life agree; that the only hope we need is that there lies relief somewhere.

But the paint won't last forever.  Someday it'll all be gone.  This earthly body will turn to dust, but my new heavenly body will feel no pain.  In that I can trust.

My dad has melanoma.  This poem comes straight from my heart.  When he was young, he didn't use sunscreen.  Sharing this poem helps me do MY part!

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I guess my mom is an odd case since she has ONLY brain mets with an apparently invisible primary. 

The chief neurosurgeon at our top hospital did her craniotomy and got the biggest of the buggers.

So now we've got a 1.8 cm at the front of left parietal lobe, 8 cm one in the left posterior putamen, and 3-4 ish mm one in the left frontal lobe right next to where the biggun (2.8 cm) was removed. 

Our radiation oncologist is also the chief of that department, and she said she thinks we will only need to do one gamma knife treatment, then scans every 2-3 months and more gamma knife if we have any recurrences (and probably will, that seems to be how it goes). 

She said that she looks at this more as "being able to manage something more akin to a chronic disease" than a doom and gloom death sentence.

This was the best news we could've hoped for, and we've even yet to meet with the melanoma specialist next week. 

If anyone as any input or comments, I welcome any and all :)

As a side note, my mom has been taking CBD/THC oil throughout this whole process. I know it's unlikely to have any curative properties on it's own and is mostly useful for symptom reduction (appetite, insomnia, pain, etc) but I'm also kind of wondering if perhaps it has contributed with the remarkably minimal edema she's had surrounding any of these tumors. Just something I'm curious about, because I feel like the lack of edema gives her a bit of wiggle room for treatments that might cause some.

Anyway, I'm super happy and just wanted to share with you all!!

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stevenallenschwartz's picture
Replies 1
Last reply 5/5/2017 - 5:13am
Replies by: UBContributor

I just returned from Mt. Sinai (Dr. Lutzky). He is one of the melonoma specialists in Sout Florida. After turning NED after my 6 infusion of Keytruda, the question was how many more infusions. His honesty was sincerely appreciated; we don't know but I recommend 1 year of infusions every 3 weeks. I have a plan....

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MikeW's picture
Replies 5
Last reply 5/5/2017 - 11:16am
Replies by: MikeW, Mark_DC, jennunicorn

Looking on here to see if the group has some insight on possible next steps after pausing treatment.

Diagnosed on Jan 17 with Stage 4 with four lung nodules the biggest of which is about the size of a marble. 

I've gone through 3 treatments of Keytruda with the usual rash/itchiness and some nausa/fatigue. Over the last 2 weeks I've been hit hard with joint inflammation and finally a prescription of low does prednisone got it under control. 

Yesterday was supposed to be the 4th treatment (I go every 3 weeks) and followed by a scan in another 3 weeks. The blood came back that my liver counts were inching up so the doc said that given the inflamation, he wasn't too surprised and wanted to get in front of the other potential auto-immune issues by 1) pausing treatment, 2) hitting me up with a higher level of steroid for a short period, 3) re-check the blood on Friday and then re-assess. 

I know I'll know a lot more after the scan in a few weeks but can't help but think through the contingencies. 

Am I off Keytruda for good now? If so, what are the options if the scan comes back with progression? 

Thanks for any ideas/experience...

Mike

Mike

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/4/2017 - 5:14pm
Replies by: Polymath

Does anyone know how much of the brain is captured on a MRI of the face/orbit?  Got call from dr office and they scheduled me a  MRI of the brain for tomorrow.  Said that they may have possibly seen something showing on my brain.  I thought MRI was specific to the area, so just wondering what part of brain would show when doing a face/orbit MRI.  Thanks for any info.

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Bobman's picture
Replies 8
Last reply 5/5/2017 - 8:16am

So I  was  supposed  to be at UCSF  on the 9th. That's  been  canceled  as my insurance  has denied  me twice , and is now on appeal .  I thought , and was told that the appeal  was also cancelled , but it turns  out that my primary  care provider  doesn't  know  how  to do an appeal , and after being  held by the hand by the great people  at UCSF , the proper  paperwork  is now where  it needs  to  be . All the frustration  I have  experienced  navigating  the system  out here ,is now shared by fully  4 other people  at UCSF , who have been  in  constant  contact  with  me , really  going  the extra  mile to get me there. We have shared a laugh  or two on the phone after they receive progress  notes, instead  of pathology  reports  that were requested .  The  system  here is broken , and that's  putting  it mild. There have been uncountable  such diversions  in simple  routine  things  that should  take five  minutes  , stretching  into  months . 

In the  meantime , I'm  up to my 11th  primary . I have so many  more  biopsies  needed it's  overwhelming . My surgeon  and  I  are just playing  whack-a-mole. He has forwarded  a letter to my insurance  to get me to SF. Neither  of us  are  comfortable  with  the  fact it's just me and  him chasing  this around . Fully ,10 of my primaries  have gone unnoticed  by three  dermatologists . I have literally  had to beg everyone  of those dermatologists  to biopsy  what I knew was a bad lesion .  I am  flying  under  the  radar  with them.

I had family  support to financially  get me to SF after the first  two denials , but UCSF  is now talking  to my insurance  company , primary  care people  and anyone  else  needed  to move this along . They told me yesterday  to sit tight  possibly  another  month  to allow  the process  to unfold . They also  asked me if I   had ever had any genetic  mutation  testing  done, which I have not. They also  asked  if it can be done out here,and I actually  don't  know. This is the first  time that subject  has come up for me. Which brings  me  to  what I  need  some  help  with  from  anyone  of you that might  know . 

I am flying  to Honolulu  on Thursday  for a PET  /CT , and  a visit  with  my oncologist  afterwards .  I have only seen him twice before  for a grand total  of no more  than 15 minutes  of his time,combined . His only  comments  to me was that I looked fine to him considering  how much Melenoma  I've  had. That was referring  to just looking at me. This will  be my fourth  scan in 5year's . The first one showed a suv value of 3.8 in the rectum,followed  by unremarkable  colonoscopy. The second  one showed suv of 6.8 in same area ,followed by another  unremarkable  colonoscopy . Third one showed suv of 8.3,same exact area,followed by yet another  unremarkable  colonoscopy ,then a MRI which noted a 15 mm mass on my liver. That was a year ago,with no follow  up since. Just several  more skin primaries  since,and so many  lesions  coming  up ,I  can't  keep  them  straight . Not a word from my oncologist  about anything  I just mentioned . What should  I  be asking  for here? Genetic  testing ?  I don't  have a clue. I've  been  working  hard  as I can  just to get cut off what I can. I just want to go in with a plan since I know  I'll  get precious  few moments  with someone  who doesn't  know  much about  melanoma .  I just  have to keep  moving  this along until  I can get to SF.

Many  thanks  as always , 

Bob  

We are one.

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Spl25's picture
Replies 2
Last reply 5/2/2017 - 10:46pm
Replies by: Spl25, Bubbles

I've been on Keytruda (Pembrolizumab) for about 9 months and have tolerated it well and had a good response, but seem to be "plateauing." It's been a while since my last scans, and some days it feels like the cancer may be progressing, although perhaps thats in my head. Is a muted response (i.e. no tumor reduction) a good enough reason to go forward with some radiation? Are there any other treatment modalities I may want to bring up with my oncologist to try to get a renewed response? Are there any trials that are for people in my position? Most of my mets are in organs or hard-to-reach lymph nodes. The overwhelming medical opinion seems to be "stay the course," but sometimes I wonder if that has to do with a kind of status quo bias among patients and doctors alike. 

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caitybird's picture
Replies 1
Last reply 5/10/2017 - 5:28pm
Replies by: Boise Steve

I am wondering if anyone out there has been on the seviprotimut-l (pol-103) trial and experienced any side effects. I have 1 more injection to finish my 2 years, have always had skin reaction (my arm looks like a drug addict that doesn't know what a vein looks like), but I've been having chronic stomach/abdominal pain for a year now, nothing helps, also having pressure changes in my head for lack of a better description. Nothing I can find in research mentions side effects beyond injection site; Dr is unconcerned; ct scans show nothing. I'll mention the Dr is not my original, I moved after starting trial and had to find another study site. The Dr I was assigned was a hematologist but left, my replacement is also a hematologist. Lymphedema specialist says maybe its lymphadema; gastroenterologist says maybe its superficial nerve pain. My next step is demanding endoscopy and colonoscopy. But, I have found articles on other immunotherapies that have caused stomach/colon responses due to basically autoimmune response. I just would like to know if anyone else has had any side effects or if I'm just falling apart.

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RitysMom's picture
Replies 3
Last reply 5/3/2017 - 7:14am

I'm at MDA this week with my daughter, Kristine. She was supposed to begin a clinical trial Thursday with pembro/azacitidine. She met with the dr yesterday and shared that she's been having headaches for a couple weeks now. He sent her for a CT of the brain and we just got the news that there are lesions on her brain. The dr is trying to get her into a neurosurgeon. It looks like this disqualifies her for the trial. We're devastated...I don't know what this means for her. Four weeks ago her brain was clear. She went off the taf/mek at that time and now they're back. I don't even know what to ask except where do we go from here?

Cindy 

Mom of the beautiful Kristine

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nicolepfeil's picture
Replies 2
Last reply 5/2/2017 - 10:00pm
Replies by: Bubbles, ToddG

We just found out that my husbands melanoma has spread to his spine.

Has anyone had to deal with this? With melanoma moving to the bones? If so what was the treatment or prognosis?

Foes this mean he now has stage 4? His oncologist is gone till next week and I can't get any answers,

 

Thank you.

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jbronicki's picture
Replies 1
Last reply 5/2/2017 - 12:36pm
Replies by: Cindyco

It's hard to think of Melanoma in terms of "upsides" but one is that you realize people got your back.  I'm a librarian here at University of Houston and other librarians here send me any new research that pings for Melanoma (it really touches me that people are out there checking for research, and as a data person, I know how important research and Open Data is to our community).   Following up Joyce's article, a librarian just sent me this about research being done here at UH, a  different approach to TCells: 

https://www.eurekalert.org/pub_releases/2017-05/uoh-ect050117.php

I'll be following this research and this professor!

Jackie <3

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Anonymous's picture
Anonymous
Replies 9
Last reply 5/8/2017 - 11:33am

I am looking for some help, and in reading many of the forum posts, I am hoping to find it here.

I am 38yo woman, very fair skinned. I used tanning beds substantially in my late teens and early 20s. In the last 3 years, I have had 3 mid-to-severe atypical moles identified. Two were removed. The last one will be removed in the coming weeks, which I'm told will require a 2 week rehab on crutches. I have two young daughers, ages 4 and 6, and have been told I am high risk for melanoma.

I absolutely cannot shake the guilt that I have brought this risk on myself and my children. My father died in a car accident when I was 10, and it took me well into my adulthood to recover. I am riddled with fear of putting my own children through the same thing, by my own bad choices several decades ago.

How do I learn to cope with this for the rest of my life? Any advice and wisdom is welcome.

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Anonymous's picture
Anonymous
Replies 1
Last reply 5/1/2017 - 4:11am
Replies by: CynthiaLee

I'm a 39 year old who was recently diagnosed with melanoma. a couple days ago I had a wide local excision between my 3rd and 4th toe and a skin graft.  I was sent home and told I didn't need a boot or crutches.  I was able to put weight on my heel post op but I think that's because the local anesthesia was still in effect. By yesterday I had to crawl to the bathroom. My husband went and bought me crutches to help.  My doctor advised me to keep my foot up as much as possible however I don't see how anything else is possible. My foot throbs whenever it's not elevated. 

I am wondering if anyone on this board has had this surgery and advice for what to expect.  My doctor made it seem like 7-10 days before I could resume normal activities but 3 days in with no improvement has me a little discouraged. 

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dmturner's picture
Replies 7
Last reply 6/3/2017 - 8:04pm
Replies by: dmturner, BrianP, Anonymous, UBContributor, Bubbles

Tomorrow I will be starting a clinical trial with the 2 above.  A bit nervous.  I did 3-10 mg Yervoy when stage IIIa, but progressed.  Then started Opvido/Yervoy Jan 5th did all 4 treatments.  Had a PET scan and progressed to lungs and effected lymph nodes had double in size.  Plus, I have intransit lesions all over my right foot.  The primary was on the bottom of right foot.  I am feeling hopeful.  It has been 6 weeks since I had any drugs in my body and I just feel like it is growing and growing.  I can see it daily on my foot.

Anyone else done or doing this trial?

Donna

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