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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GeoTony's picture
Replies 2
Last reply 5/7/2017 - 11:47am
Replies by: AliCat61, jennunicorn

So, I turned up at the walk in clinic, Aug 2014, with an annoying mole that was now itching, I suffer from eczema so itching skin is normal, this wasn't responding to the normal eczema cream. Dr Cruz took a needle biopsy and this is where my journey started, it turned out to be melanoma, this was followed by a WLE and SLNB, Dr White and Dr Biberdorf were excellent, they took 5 lymph nodes and I was left with 29 staples. Margins were clear and all lymph nodes were clear, so I met my Dermatologist, Dr Kenny who explained that I had superficial spreading melanoma with a nodule (the more worrying portion), 3.9mm deep and was lucky as everything was clear. He would physically monitor me for the next few years at 3 month intervals, so this became part of my normal routine, every 3 months Dr Kenny would examine me from head to toe for dodgy moles. The first sign that everything was not ok was approximately one year later with the rapid appearance ( this came up within a couple of days) of a small hard lump on one of my left ribs, the needle biopsy was negative for melanoma, it was put down as a small hematoma, which did shrink back after a couple of weeks. However in August 2016 this re-appeared along with a nearby swollen lymph node, this time the biopsies confirmed melanoma, I was now officially Stage III. What followed over the next few months was a flurry of appointments, hospital visits, scans and testing. Initially I was prepped for a lymphadenectomy with Dr Biberdorf, however following the PET scan I moved up to Stage IV with the discovery of multiple 'hot spots/tumours' in my liver, lungs, potentially bones (sternum and a couple of vertebrae) and surgery was no longer an option. So I opted for the biggest stick available, turned down the Kertuda option in Victoria, BC and we relocated to Vancouver, BC, lucked out on accommodation and I started on the extended access clinical trial for Ipi/Nivo on the 1st December 2016 under the superb guidance of Dr Kerry Savage and her team. I managed to work through the first round, some minor issues with skin and fatigue. The second round knocked me for six, it was a memorable Christmas and New Year with severe fatigue, pneumonitis and skin issues, a bright red back from neck to waist. Dr Savage prescribed prednisone, 75mg, wow did it work, everything cleared within a few days and I was now flying, however I missed my Ipi/nivo third round, it took a month to wean me off the cortosteriods and I collected another expert for my team, Dr Bourdain the Pulmonologist who is now monitoring my lungs, regular pulmonary testing, X-Ray and CT. So round four of the trial happened mid February with no significant issues, my 3 month scan occurred a week after the Ipi/nivo infusion and showed good results, overall reduced tumour load, so I moved onto the maintenance schedule of nivo every 2 weeks, all going well until my heart attack!
Yup, I suffered a heart attack. It appeared as severe heartburn, sore left elbow and tingling fingers over about 20 mins. It happened to be the day before an infusion so I was at the cancer agency between bloodwork and onc consult. I mentioned it in my consult meeting, Dr Savage arranged for me to visit emergency and I was admitted and left 2 days later with a stent, bag of additional drugs and a new expert on the team, Dr Tsang, Cardiologist. As you can imagine it was a lot more involved, but the bottom line is the heart issue is not related to the clinical trial, it's down to a partially blocked artery, apparently my cholesterol of 5.2 was more of an issue than I appreciated, despite normal blood pressure, 120/80, resting heartbeat of 65 and regular exercise, gym most days, walking regularly and cycling up to 120km per week, who knew. I happened to be in the right place when it occurred and I'm now back on the trial bandwagon having missed one maintenance infusion. My 2 month scans are due next week, along with my cardiology consult and my next infusion, so it's full steam ahead.

Tony -  IV - Ipi/Nivo (Yervoy/Opdivo); now on Nivo maintenance

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Bobman's picture
Replies 3
Last reply 5/7/2017 - 11:35am
Replies by: AliCat61, Bobman, Janner

My trip to Queens  medical  center  in Honolulu  got  off  to  a  bumpy start . I  flew in Wednesday  night , got a hotel  room , and  tried  to settle  down  before  my 7:30 am PET /CT. At 6 am I  got a call from the scanning  department  that  the  infusion  machine  was not working , and that they had to cancel  until  it could  be  fixed. Part's  would  need  to be ordered  from the mainland . Part 1 of my meltdown  was under  way. I decided  to head over to the cancer  center  at the hospital  anyway  since  I  was  scheduled  to see my oncologist  at 2:30 pm to review  the scan . They were  just opening  the door  at 7 am when I  arrived . I told  them Pet/CT  was offline . They  said sit tight  until  they  knew  what  to do with me. At 8:30 they told  me to fly back  home  since there would  be  nothing  to review . Part 2 of my meltdown  kicked in.

They didn't  know it, but besides  reviewing  my scan, I  wanted  to push  my oncologist  to get on board  with  me  getting  to  UCSF . I asked  if I  could  still  see him? At 9 am they said  yes. Part 3 of my meltdown  was wandering  aimlessly  throughout  the large grounds of the medical  complex trying to convince  myself  to not  give up on the entire  process . I was  angry . So angry . Not at anyone , or any one thing. Just so pissed. For the next 6 hour's  I   wandered. 

At 3:00 pm I  saw my oncologist .  I pleaded  my case bringing  him up to speed  on my most current  developments ,and my commitment  to working  with melanoma  specialists  at UCSF . He was extremely  attentive , supportive , and  willing  to jump on board . For the next 45 minutes  we hammered  out a team work  approach  how to proceed . I showed him several  of my new lesions  which  he  looked  at very closely .  He said "They look totally  benign . " I said yeah,they all have. Then, I  swear I  saw the light click on. He wondered  a loud  " I  wonder if you are truly  metastasized to the epidermis  " He got it. And at the same time, I got it. I have been so frustrated  that no dermatologist  was catching  my melanomas  over the year's , and I kept shopping new ones  thinking  incompetence , rather  than just a unique  version  of the beast. But  only after developing  a keen eye on my lesions  have I been  so successful  at catching  them. They  truly  don't  look that bad to anyone  but me....I get it. I've  been  floating  the possibility  of epidermatropic  metastatic  melanoma  for some  time now. I feel  confident  my team is nearly  fully assembled. I'm not so pissed as earlier  in the day...rather  happy  actually . 

I want to thank MRF for making this forum  possible , and each and every one of you who share your  stories  here. The good , the bad,the ugly ,the triumphs . ....and the sad. It all blends together  for the benefit  of all . I appreciate  the advocacy  of everyone  here. Every  story is important , and helps in so many  ways . 

Bob

 

We are one.

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/6/2017 - 10:40pm
Replies by: Janner, Anonymous

How do pathologist tell the difference between a benign mole and a malignant mole. They do shave biopsy at my dermatologist office, doesn't that produce a false benign if they don't get the whole lesions 

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Anonymous's picture
Anonymous
Replies 7
Last reply 5/6/2017 - 10:14pm

Hi, 

 

My dad had a few moles on his back biopsied.  One came back as an aggressive melanoma, about 3mm, ulcerated. He was referred to surgical oncology. He is having a WLE and a lymph node biopsy in a few days. We saw his medical oncologist and he is suggesting   postponing the surgery and having a PET scan and MRI. With insurance who knows when he will get the approval for the scans.  We want to go through with surgery first.
My question is,  what were you initial steps? Surgery first and then scans?

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Once you get on this train, for it is a very much like a train, there is no getting off.  My cancer journey started in July of 2016 and has been moving ahead full speed since then.  There are no breaks.  There is no time to absorb what's happening.  The doctor says "jump" and we say "how high".  

Looking back I have to say that I had a routine mole screen 11 years ago and had a suspicious mole removed.  It turned out to be pre-stage 1 and so I quickly had re-removal surgery.  I've had all my routine mole screens since then and they always told me not to worry.  I was perfectly healthy and doing fine.

When the initial lumps showed up the dermatologist told me not to worry and said it was just fatty tissue.  He didn't even want to biopsy.  I had to push very hard for over a month to get proper care.  Luckily my primary care was on my side and helped me get a biopsy, CT scan, and treatment.

Now I dread the appointments, the IVs, the blood draws.  I'm on immunotherapy and have had brain surgery plus SRT radiation for an aggressive brain met.  I know I have it easier than most so I shouldn't complain.  It's just that it takes everything from you.  First it takes the feeling of safety.  Then it takes your routine.  Next it takes your ability to care for your children and your ability to work.  So you go on short term disability and pray you can pay the bills.  You teach your husband how to cook and do the laundry and pay the bills.  You fantasize about getting to exercise and to drive your car.  What I wouldn't give for a half glass of wine.

The worst part is the look that almost everyone gives you.  I'm sure you know it.  The "you have cancer" face that they can't seem to hide.  No one knows what to say to you so it is awkward.  Even close friends get strange.  Then comes the barage of kindness.  Everyone wants to help so they call or text or send a note to let them know what they can do to help you out.  Honestly, I never know how to answer this question.  I end up thanking them and telling them I'll let them know.  

The cancer is in control now.  I can't slow down this train and I can't get off.  I just want to go back to my life.  Play with my kids and go to work and worry about whether the green shirt is clean for green shirt day.  Yes, this is an actual thing at my daughter's school.  So this is me trying to accept my diagnosis a full eight months after first being diagnosed.

Thanks.  

Just another Jennifer

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Scooby123's picture
Replies 3
Last reply 5/5/2017 - 6:18pm
Replies by: BrianP, Scooby123, Bubbles

Hi all, update went for results today which was not back so consultant had to look at them for me. So he said brain looks ok still. Body liver, lungs still stable but tumour in lung lympth node grown 2mm but was not concernd due to he said within a year. I asked about treatment but he said no watch wait . Radiation not possible due to where it is could cause more harm.question anyone had tumours in lung lympth nodes and how big before treating them. He said it was 20.2 mm . scan again in 3 months time , he said it was slow growing .

scooby xx

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Anonymous's picture
Replies 5
Last reply 5/5/2017 - 12:52pm
Replies by: Bubbles, Anonymous, SABKLYN, Ed Williams

Hi All,

I was recently diagnosed with melanoma via a shave biopsy on a mole I've had on my chest since birth. 

The mole protruded about 2-3mm from my skin before I started getting some abnormal growth.  They did a shave biopsy but weren't able to determine the exact depth of penetration since it extended past the skin sample.

I've included the full report below for details of the specific diagnosis. I should also highlight that I'm a 40 year old, healthy male with a history of cancer in my family -- brain, prostate, luekemia, and one minor melanoma incident that was caught early (grandfather on my mother's side.

I'm meeting with my oncologist tomorrow afternoon, and I'm not sure exactly what questions I should ask.  

I would love any help on...
 - Questions to ask my doctor?
 - Other posts I should read that have similar diagnosis?
- Recommendations on other things I should be doing / reading?

 

METHOD: Shave Biopsy

LOCATION: Left middle of chest

FINDINGS:
- Melanoma arising in association with a nevus, Breslow thickness at least 3 mm, lesional cells extend to the base and both peripheral edges of the biopsy (See Comment Section)
- Ulceration present
- Mitotic activity: 12 mitotic figures/mm2
- Tumor infiltrating lymphocytes: Focally present, non-brisk
- No lymph/vascular or peri-neural invasion identified
- No evidence of regression
- Satellite metastasis:  N/A

COMMENT:
This neoplasm is polypoid.  The lesional cells extend to the edges of the biopsy.  Therefore, complete excision of this lesion/lesion site with appropriate lesion free margins is advised.  Correlation with the excision specimen will be necessary to determine the final Breslow thickness. 

 

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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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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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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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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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AB's picture
Replies 11
Last reply 5/5/2017 - 1:11am
Anonymous's picture
Anonymous
Replies 5
Last reply 5/4/2017 - 10:32pm
Replies by: AB, Lydia, Cynlee

I have a mole on the sole of my foot. It appeared around 18 months ago but recently it became really itchy. When I looked it had changed, it appears to have grown legs! I went to see my doctor last Saturday, who referred me to a Dermatologist. They rang Monday and booked me in for Wednesday. I received a letter from my doctor with advise on 'cancer referral' - oh he didn't mention that! 

Anyway, I went to the dermatologist who had a look through the scope and photographed the mole, he spent about a minute looking at it and then said it will need to be removed. The nurse said I would receive an appointment 2-4 weeks through the post. I got a call today (Thursday) to go in tomorrow to have it removed (Friday) 

 

sounds silly but but this has me worried now the speed of it all! Should I be worried?? 

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josephsli's picture
Replies 5
Last reply 5/4/2017 - 5:46pm
Replies by: Anonymous, jessann, POW, josephsli, Janner

Hi, 

I am an Asian male, 34, and have had a mole-like lesion on my right arm since I was very young (or even likely born with it) for as long as I can remember, and more importantly, its size and shape has NOT changed at all since at least 15 years ago when my parents and I I started observing it. 

In late June, I went to see a dermatologist for a separate condition (a mole on my face), which the doctor very quickly dismissed as anything alarming but believed that the congenital nevus on my arm closely resembles the typical melanoma: blurry boarders, asymmetric shape, etc. The only counter-argument I had was that it has NOT changed at all for at least 15 years. The doctor then advised that a PREVENTATIVE full excision be performed, even it was NOT likely a melanoma due to my race, age, which I followed and the full excision biopsy was performed. 

2 weeks later (just today), the pathologist's report came back with a shocking melanoma diagnosis:

'right posterior arm, malignant melanoma, approx. 0.4mm tumor thickness with associated congenital compound nevus, 0 mitotic figures per mm2, nonulcerated, completely excised on all edges and in depth.

comment: ki-67 would be of value to better interpret the dermal cells which, although they resemble the epidermal cells, merge into areas of congenital nevus with areas of maturation.'

In 'layman's language', the doctor told me:

1) according to the 1st pathological reading of the biopsy sample, this is a malignant melanoma

2) based on info presented, it looks like a Stage I, but we have ordered staining (ki-67 is actually a protein)/enhanced specimen processing ('2nd pathological reading') to see if my melanoma cells are REALLY contained within the 0.4mm depth vs. having already spread

3) regardless of the 2nd pathological reading, a 2nd excision surgery needs to be performed ASAP to remove an even larger area, but the 2nd pathological reading will determine how deep/wide this 2nd excision will be. 

My questions at this stage is simple - could the 1st pathological reading have been 'a false positive', considering the fact that my lesion has NOT changed for at least 15 years (not months!)? I read somewhere that about 16% melanoma biopsies result in false positives, however they usually occur during partial excision (my case was full excision). Also to my 'disadvantage', both my dermatologist and his dermatological pathologist agreed with the melanoma diagnosis. 

Any opinion or references will be helpful. I have a loving and supporting yet vulnerable wife, a 3 year old girl, and a 25 day old son. Your prayers will be greatly appreciated.

Thanks

Joe

 

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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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