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
MarkR's picture
Replies 0

So quick history - completed 4 rounds of Ipi/Nivo but then suffered enlarged pituitary and liver problems that took 4 months to resolve and have not moved on to Opdivo maintenance.  1st scan showed about 15-20% reduction but scan results today showed stable since last scan.  While I wasn’t expecting much of a reduction I was hoping for a bit so am a little disappointed.   Options now seems to be:

-  Surgery but complications with nerves could result in mobility loss in my left hand

-  Radiation that would stop the option of further surgery

- Leave it alone and hope it remains stable and forget about it; or

- Maybe restart Nivo but there are worries about side effects again

Is anyone out there living with stable disease and how is it going for you...?

Thanks

Mark

Login or register to post replies.

Has anyone experienced this while on Opdivo? I have bad heel pain that wasn’t too bad in the early months of Opdivo but now sometimes I feel like I can hardly walk. Feels like plantar fascitiis (which I used to have at times but controlled with exercise), but now it is so pronounced. Have been heavily dosing with ibuprofen and started soaking with epsom salts and have acupuncture appointment soon. 

Am I right to be treating this generally like plantar fasciitis?

Cindy

Diagnosed April 2018; Stage IIIb; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; about to start radiation 

Login or register to post replies.

VinceMart's picture
Replies 11
Last reply 12/18/2018 - 2:51pm

Hi all,

I have been on steroids for back pain for the past week and a half and my next infusion #2 next week. I meet with Dr. this Wed to discuss pain and plan.  Hope they can still give me Ipi/Nivo #2, I really need to keep going with this. Starting acupuncture tomorrow to try to releave back pain, and palative care appt after Christmas.  Anyone been on Ipi/ Nivo and steroids at the same time?  I am worried that I won't be able to continue.

Thanks, as always!

Vince

Login or register to post replies.

mandyjill's picture
Replies 6
Last reply 12/17/2018 - 10:43pm

Prayers appreciated for my scans this coming Wednesday.  First ones since I finished my clinical trial back in August and am a little nervous.

Login or register to post replies.

Anonymous's picture
Replies 4
Last reply 12/17/2018 - 8:47pm

Good day!

My Mom has stage IV cancer. Melanoma. She has been taking Opdivo for a month, once every two weeks, as recomended. However, Opdivo has run out in my country (I do not live in the USA) and the doctor suggested that I used Keytruda instead of Opdivo. I understand that both treatments are very similar. However, how safe and reasonable is it to replace Opdivo with Keytruda before even getting the first results of any progress? If my mom starts Keytruda, will it means that she starts treatment from the very beggining?

The second question is regarding plan B. There is recomendation regarding combined treatment: Opdivo + Evroy, as a plan B. However, if I do not have Opdivo, is it possible to combine Keytruda and Evroy? I have never seen such recomendations, but only with Opdivo.

Can you advice?

Thx

Login or register to post replies.

EricaInMS's picture
Replies 3
Last reply 12/17/2018 - 8:21pm

A lot has changed since my husband's diagnosis (Stage 3C recurrent, so maybe Stage 4) 16 years ago.  He had been NED since 2005, but now has a tumor and malignant lymph nodes - we should get the results of the biopsy today or tomorrow confirming that it is melanoma (not sure when we will get the BRAF results).  He has a PET scan on the 26th, and we are hoping that there is no melanoma in any internal organs.  He does have a cracked rib adjacent to the tumor - we are unclear how they are related, and he is in a lot of pain with it and it is not healing. We have a follow-up with our local oncologist on Dec 28th to discuss the path forward.

I'm really excited with all of the treatment options and trials available to us today.  I don't want to move forward with treatment until we meet with a doctor who specializes in melanoma, but that appointment (Dr Parnell at UAB) is not until January 23rd.

I'm looking for some thoughts/advice as to how we should proceed.  Take the aggressive route and tackle the tumor now?  Or can we wait a month?  With the tumor affecting the rib, I'm not sure I want to wait a month, but many of the trial require a tumor to be measured.  I'm also a little confused as the trials say "inoperable" but also easily measurable with palpatation/ultrasound.  The nodes under his arm meet the easily accessible part, but that also makes them easy to remove.  Not looking forward to the lymphadema that comes with removing the node - we already have that with his leg.

Thank-you in advance for your help,

Erica

Login or register to post replies.

jmp_0513's picture
Replies 9
Last reply 12/17/2018 - 2:18pm

Hi all,

(Long post alert, but I have so many thoughts in my jumbled mind!) I'm new here, but I feel so fortunate to have found this board! My husband, age 32, had a couple of suspicious moles removed from his back on Dec. 5. We found out last week that one has come back as melanoma. I don't have the full path report in front of me, but the keys I can remember are: .9 depth, clark level IV, no ulceration, no regression, mitotic rate 0/mm2.

We met with the oncologic dermatologist on Friday, and as far as he can tell now, he feels very confident it was all removed, as all signs & margins are looking good. Of course, the only way to know for sure is to have a WLE, and they're suggesting a SLN Biopsy, as well (Darn that .1 mm that puts him over the revised .8 mm threshold for needing that)

We aren't able to have a consult with the melanoma surgeon until Jan. 4, and the anxiety is making me sick! As if hearing this diagnosis isn't bad enough, its made even worse that we have a 2 year old at home, and I'm  pregnant with baby #2, making this anxiety prone, hormonal wife go even crazier. My husband is putting on such a brave face, saying he, too, feels confident and that this is just a bump in our journey.

We're taking solace in our Christian faith, the fact that we're lucky enough to live in MN and be patients at the Mayo Clinic, and the fact that our dermatologist feels confident. We keep hoping that if it were something really to be super concerned about, time would be of the essence, and we wouldn't need to wait 3 weeks for the next consult. All of that though, doesn't help me feel any less like this waiting game is a bit like I'd imagine purgatory - will we be faced with the hell of cancer treatments and uncertainty, or the praise and rejoice of beating it once, diligently taking care of ourselves to hopefully catch it early again? I keep having nightmares of being a single mom :( 

If you're still reading this novel :), a couple general questions about for those of you more knowledgeable than me: 1. How long does the biopsy procedure take? (It sounds like they'll do the WLE & SLNB together)  2. How long until the results come back? 3. What sort of recovery process? Will he be laid up for a few days?

THANK YOU, and God's blessings on all of you!

-J

Login or register to post replies.

TexMelanomex's picture
Replies 24
Last reply 12/18/2018 - 1:57pm

Hey Warriors!

Today is surgery day for Mike, please send extra good vibes, thoughts, and prayers his way today. He's got this but it never hurts to send a little love.

Warrior on Mike!

Tex

Login or register to post replies.

dessie's picture
Replies 9
Last reply 12/17/2018 - 11:08pm

Hey all,

Been reading posts about every one's concerns, hopes,, and questions...Not very active here but definitely wanted to share with everyone my last PET scan results.  I have till first week of March 2019 for my final hoorah on Opidivo.  Just got my PET scan and all was negative!!  

This was the best Christmas gift I could every receive!  Keep the faith and hope everyone gets good news  for the upcoming New Year!!

Merry Chirstmas and Happy New Year early!!

All the best,

Dessie

Login or register to post replies.

jsmith279's picture
Replies 6
Last reply 12/17/2018 - 2:31pm

I have no idea what I am doing, but I'm just going for it...

Jen

http://www.wifesjourneywithmelanoma.blogspot.com

 

Jen

Login or register to post replies.

TexMelanomex's picture
Replies 5
Last reply 12/17/2018 - 11:20am

Warriors, inspired by Celeste I have finally formed the bones of a blog I've been meaning to put out there. It shows the physical aspect of my battle with melanoma and the treatment progression including WLE, skin graft, lymph node dissection, and of course PV-10!

It is somewhat graphic so the faint at heart should skip the site. Like I said, its just the bones and I plan to put much more content into it. Unlike Celeste's blog it will not contain useful clinical infornation, I'll leave that expertise to her. This is more of an informal glimpse into what my battle looked like from the outside and maybe later I'll add what it was like on the inside.

www.melanomawarrior.org

Warrior On!

 

Tex

Tex

Login or register to post replies.

fdgfdgfdgf

Login or register to post replies.

obftwmlg10's picture
Replies 1
Last reply 12/15/2018 - 11:51pm
Replies by: Janner

Hopefully this story won’t sound too self indulgent. In the summer, my other half noticed a mole and thought it had changed. Went to GP who said it was harmless but would take it out anyway. Due to being told it was harmless, I didn’t get it out for a couple of months. That was on 12th November. It came back 1b superficial spreading and I got a hospital appointment three days later. The hospital said that all the tumour has been removed by my GP and he had taken a good safety zone too. However, they want to do a WLE in January. The doctor at hospital checked me thorough ly and felt no issues with my lymphs. They won’t consider SLNB necessary. I’ve to be followed for a year . Got a letter with the full result of my tumour. It was a 0.8mm non ulcerated superficial melanoma and had a zero mitotic rate. I understand this is positive. Anyway, despite feeling reassured, I’ve started to get really worried that my body is full of this illness and things like worrying that a cough shows it’s spread and they didn’t notice. I’m worried because the irrational side of me is taking over.

Login or register to post replies.

Summer S.'s picture
Replies 6
Last reply 12/16/2018 - 3:38pm

My mom was diagnosed with Stage IV in May, although I am fighting by her side everyday, I feel extremely anxious lately especially with two consecutive progression reports over the past 7 months. I also feel rather helpless and sad and most of the time, I was rushed to the ER last week due to severe anxiety and lack of sleep that heavily affected my body. 

How do you guys stay so strong? how do you live with the diagnosis and enjoy the precious moments you have with your beloved ones ? how do you live normally knowing things may never get better ...

And especially for caregivers out there, how do you survive the feelings of guilt and helplessness

 

Login or register to post replies.

Summer S.'s picture
Replies 4
Last reply 12/16/2018 - 6:14am
Replies by: Summer S., ed williams

Hi :))

My mom 71 y/o was diagnosed with Stage IV melanoma in May, since tumors were only spread across the skin and distant lymph nodes doctors decided to start with Immunotherapy alothough she was PL-1 negative. After the first 3 months LDH levels dropped and she was feeling better (more energy, less muscle pain, no itching ..etc) but PET/CT revealed progression, so we continued for another 3 months hoping that it would be psaudoprogression. Unfortunately, it was not. So her doctor recommened Zelboraf 

I have been reading about how Zelboraf if not actual cure, it only slows progression or stops it for while, and I am very scared and frustrated now.

I arrange all her doctor appointments, insurance, nutrition, ..etc especially that we live in an African country where melanoma is extremely rare and health care system is complicated anyway. So I really need your advice on what the next step should be? is there an actual solution I should be working on now? 

She is starting on her first dose of Zelboraf tonight,  and I really hope for the best, but I want to be prepared for the next step. 

 

Login or register to post replies.

Pages