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.

Expand/ Collapse Topic
 
Replies By
View Topic
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 

Login or register to post replies.

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

Login or register to post replies.

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]

Login or register to post replies.

RitysMom's picture
Replies 3
Last reply 5/13/2017 - 8:36pm

Last Thursday, my daughter met with a radiation oncologist, neurosurgeon, and her melanoma specialist at MDA. All three said her only option was a second round of WBRT. Her first round was 3 weeks in August of 2016. This time they're planning to do 2 weeks. Afterward, they will start her on Keytruda. They also said that gamma knife might be an option in the future, once the number of brain mets is a more manageable number.

The neurosurgeon said that one of the long-term effects of WBRT was memory loss, but that if she's experiencing that 1 or 2 years in the future, we should celebrate that she's still here...that was hard to hear. In spite of that, I truly am hopeful that she will overcome this most recent setback. What I'd like to know is what might we be looking at side-effect wise...is memory loss the worst thing she might experience? I'm not discounting how frustrating that would be for her, but as her mom, I just want her to live.

This is from her MRI

Findings: As noted on the recent prior comparison examination there are multiple hemorrhagic lesions seen within the brain parenchyma. The dominant lesion is seen in the LEFT occipital lobe measuring 32 mm with central necrosis and moderate surrounding vasogenic edema. There is a largely solid lesion seen within the RIGHT single gyrus measuring 19 mm. Minimal additional lesions are identified most of which are smaller in size. A 21 mm cyst seen lobe.

Impression: Rapid development of greater than 20 hemorrhagic intra-axial enhancing lesions associated with mild/moderate vasogenic edema. These are consistent with hemorrhagic metastases.

 

Any insight is appreciated.

 

 

Cindy 

Mom of the beautiful Kristine

Login or register to post replies.

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

Login or register to post replies.

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???

Login or register to post replies.

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

Login or register to post replies.

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 !

Login or register to post replies.

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?

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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 

Login or register to post replies.

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.

Login or register to post replies.

Pages