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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betsyl's picture
Replies 6
Last reply 5/10/2017 - 12:01pm

Hey, all,

My husband is almost halfway through his planned six-month course of first-line Keytruda. 

Now that he's had four infusions, he's really feeling the fatigue (and some joint pain) and is wondering if these effects will subside when treatment ends.

If you are in the post-treatment phase, what has been your experience been with regard to persistent side effects?

Thanks and best wishes!

 

-Betsy

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 5/10/2017 - 11:13am
Replies by: Anonymous, cancersnewnormal

Hello guys.. So I just wanted to get opinions on mole regrowth on a shave biospy. About six months ago I had my routine mole screening and had 3 shaved for testing. Not out of the norm, I've had a number of severely atypical moles & gotten them excised with clear margins. At that time 1 mole came back severely atypical and I went back and had my procedure done. I didn't even question the other two shaves. Just was told they were fine. Fast forward to now, one of the moles shaved has regrowth through the scar tissue. It's wasn't a tiny speck, almost completely back. So I made my biannual appointment and she re-shaved that mole and took 2 others...I'm in my impatiently waiting results limbo. I asked about the pathology on the initial shave and she said it was mildly atypical but benign. Had anyone had a benign mole regrow into melanoma...I feel sick with worry because that was the mole I worri d about before its first shave.

[IMG]http://i68.tinypic.com/2hd75mw.jpg[/IMG]

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DocPain's picture
Replies 5
Last reply 5/10/2017 - 10:22am

Since I was first diagnosed, my underlying attitude has been one of, "This too will pass and I will get on with my life."

i have friends who have read up on metastatic melanoma and they want to know how I can be positive about it. Perhaps I really don't know better, but I have to laugh and stay upbeat.

i have another friend whose wife had melanoma and is now NED. He smiles and tells me to keep laughing. It is the best medicine.

Sometimes it can get tough....

Doc Pain

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newmanmark's picture
Replies 7
Last reply 5/10/2017 - 3:16am

Hello,

I am on Nivolumab and was doing well with it.  My latest bloodwork showed elevated AST and ALT levels.  The doctor has taken me off of treatment and put me on steroids in an effort to bring the levels back down.  I was wondering if anyone with a similar experience was able to get back on treatment after the steroids were successful in returning your liver levels back to normal?

Mark

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Shaneswife's picture
Replies 5
Last reply 5/10/2017 - 3:11am

It's scan week. Brain MRI and chest/pelvis/abdomen CT scans. We get the results next Tuesday. Shane's had a cough for the past month so I'm expecting that the dabrafenib and tramentinib likely aren't working in the lungs anymore. It could go either way for the liver or brain but no idea where else it may have progressed less the spine as he's having back pain lately. We expect him to be switched to an anti pd-1 inhibitor likely pembrolizumab once progression is confirmed. Unfortunately our health care doesn't cover the combo and Shane is still ineligible for any trials. And still I'm worried about his steroid use to control symptoms in combo with the pembro. Guess I'm just a bag of nerves this week. 

 

Janis 

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adriana cooper's picture
Replies 5
Last reply 5/9/2017 - 9:13pm

http://www.king5.com/news/local/washington-governor-signs-bill-allowing-...

 

I am shocked this was a thing and was un aware. In my opinion not only should it be allowed,  it should be required and schools should be handing it out. Kids are required to go outside in  the sun on field trips and PE class. 

I would urge you to check your schools and state. Contact your legislators. angrysurprise

Shouldn't we require protection. We require vaccinations, bike helmets (here) and life vests for boating.

 

Rob.

Adriana

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1derdog's picture
Replies 6
Last reply 5/9/2017 - 9:04pm

My husband has been on Keytruda for over 16 months.  His tumor is not spreading & hasn't increased.  So, our doctor has taken him off Keytruda & us just montoring him for now.  We get scans every three months.  So, it's a wait & see.  I don't have to tell you all that with every scan we hold our breath & hope the best.  I know this my new normal but I, as his caregiver, an slowing breaking.  He also suffers from several other ailments not withstanding Parkinsons disease.  He's in chronic pain & I believe his cognitive ability is diminishing.  Sorry for not getting to my question yet. On top of doing my best to take care of him we're dealing with billing issues from the hospital for his Keytruda.  My husband has a Medicare Advantage Plan (PPO) Anthem Medigap Blue.  They will not pay more than what they pay Medicare for Keytruda & the hospital has charged us with the balance.  For three treatments at their facility they are demanding over $27,000 that we simply don't have. We don't qualify for any assistance program through Merck or the hospital.  But more importantly, the hospital didn't inform us of the discrepancy until 20 months after they sent an initial bill only requesting $200.00 which we paid promptly.  Has anyone else encounter this sort of billing problem.  I have spoken to the hospital several times & informed them that this is unacceptable & a big surprise to us since we're retired & are concerned to use Keytruda if we need to because of this differential in payment. They continue to leave phone messages & send us demanding payment.  We no longer go to that facility so we no longer have a relationship with anyone there to advocate on our behalf.  We are desperate for help.   Has anyone on this Board encountered this problem or know how we can proceed.  All we hear from the insurance company is that"balance billing" is illegal but they can't help us short of us getting either a billing advocate or an attorney.  If anyone here can help we would greatly appreciate any guidance.  This Board is a life saver.  

Thank you & God Bless!

loving wife & Caregiver

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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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ECHO's picture
Replies 5
Last reply 5/8/2017 - 10:18am
Replies by: ECHO, jyc, CindyCo

hi everyone,
my mother suffers from mucosal melanoma now and we couldn't find an effective drug. because of this disease, her right face swells for over five months. we've tried PD-1,and PD-1& yervoy combo, but they didn't work. She did a genetic test. It’s a ctDNA test using NGS. The result shows that there’re 4 genes mutated out of 66
MAP2K1 c.199G>A(p.D67N)
GNA11  c.547C>T  (p.R183C)
NRAS   c.182A>G  (p.Q61R)
KIT    c.1961T>C  (p.V654A)
As recommended, she took cotellic&PDL-1, but sadly, it didn’t work either. I felt that we were running out of our way to cure the disease. So can anyone give some suggestion? I really appreciate!!

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oconnorr's picture
Replies 6
Last reply 5/8/2017 - 12:25am
Replies by: jyc, oconnorr, Bubbles

Looking for advice, encouragement, clinical trail opportunities, resources, and support to advocate for my Dad who was just diagnosed with stage IVb mucosal melanoma.  I know my list of needs are broad, obviously I'm struggling with where to start. 

As of receiving the diagnosis one week ago, he has only seen his ENT.  He will have his first visit with the oncologist on Monday, May 8th. I have looked into targeted and immuno therapy options, but all of the information can be so overwhelming.  At this point, it would be nice to take a break from reading published clinical trial results and reading FDA drug information and connect with actual human beings.

thank you for any help you can provide!

Background- My dad was diagnosed with Stage IV B mucosal melanoma in April of this year, 2017.  He had a CAT scan in January 2017 that was unremarkeable.  His doctor performed a sinus clearing procedure when the antibiotics were ineffective, and melanoma cells were found in his biopsy report.  The MRI revealed the tumor has spread back to the edge of the dura, filled his sinuses, to his upper forehead and down to his gums. It is respectable, but resection is not recommended because the margins aren't clean. The only "good" news received is that as of the first week in May, it has not yet metasticized in his organs or a lymph node.

Rachelle M O'Connor

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/7/2017 - 5:16pm
Replies by: Janner, Anonymous

If the pathology says no architecture atypia is present, is that meaning the mole is completely benign?
Final diagnosis was benign compound nevus, but I don't know if it was atypical or not. Also to mention that the mole was very dark and scary. Could misdiagnosis happen???

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Anonymous's picture
Anonymous
Replies 2
Last reply 5/7/2017 - 11:50am
Replies by: Anonymous

I'm very lucky that I've had surgery for 2 which they said they got it all and getting. 2nd excision on Monday on3rd diagnosis because first excision didn't get it all - just so scared that it will show up later somewhere else and I go every 3 months but so many times it spreads.  I love the sun.  I love boating.  I love fishing!  I wish muppets mom would have know how important sunscreen was when I was little !

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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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