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

I received my first Opdivo infusion on Thursday, and within 30 seconds of the drip starting I became hot and flushed . . my chest tightened and I felt like I was getting SOB. They immediately stopped the drip and hit me with some Benadryl. I got super upset and started to cry, thinking I wasn't going to be able to get the treatment but the wonderful staff assured me to not worry. They began the drip again a little while later, but this time I was on a hourly drip as opposed to the half hour. I felt super tired the next day but am alright today. 

Have any of you ever had this happen?

What caused it?

Will this get worse?

Does this mean that Opdivo won't work for me?

Maybe I'm just super sensitive? I get a weird feeling and can taste it every time they do a saline flush, so maybe it's just me? Thank you all in advance for your insight and experiences. :)

Login or register to post replies.

efewrfsdfdgdfg

Login or register to post replies.

Julie in SoCal's picture
Replies 9
Last reply 1/18/2019 - 11:21pm

Good afternoon, friends!

Yesterday I had scans and saw the Rock Star doc and the news is that I remain NSLCS 3a and Melanoma 3c.  I only have the 3 small subQ Mel Mets in my elbow. So good all round.  Phew! 

So the plan is to try T-VEC.  I start next Wed.  RS Doc says that if it works it could clear out any of the remaining mel critters in my arm.  This is good news.  And if it doesn't work, I can always have them removed by surgery.  

Thanks friends for your encouragement, wisdom and love!!

Shalom,

Julie

Login or register to post replies.

Scooby123's picture
Replies 1
Last reply 1/19/2019 - 1:31pm
Replies by: Julie in SoCal

Hi my friends just a quick question for those who had brain tumours. After treatment if been clear for 2 years or more did your scans change from 3 to 6 months. Been for check today had a brain tumour 2015 been ok since touch wood. My concultant decided to change my scans from 3 to 6months.
Regards
Scooby ❤

Login or register to post replies.

MMH's picture
Replies 5
Last reply 1/18/2019 - 8:12am

I had my first melanoma removed in August. It was unusual looking, pink and brown, almost like a pimple.  My dermatologist initially said let's watch it, I said no thanks let's remove it, and it turned out to be a spitzoid melanoma.  

I went in today due to a new spot on my back. Similarly odd, but not exactly the same look as the spitzoid.  Anyway, they told me it is a keratosis. I want to believe them because that is good news. With a diagnosis of keratosis, there is no option of biopsy, just freezing off.  Has anyone ever had a keratosis diagnosis that turned out to be a melanoma?  I really need to trust my doctors, but it is tough after the last time.     

MMH

Login or register to post replies.

Amanda R's picture
Replies 4
Last reply 1/17/2019 - 12:10pm
Replies by: Janner, Amanda R

Hi, I apologize in advance if my story seems less than serious I am just in need of some counsel.  This past October I had a few skin biopsies because I was concerned about a few spots. I was ignorant to biopsies and really anything regarding dermatology procedures. I have since read more than I prob needed to as I have really frightened myself into the possibility that something could have been missed after reading others stories of getting a benign biopsy report only to find out it actually was not benign either with subsequent biopsy or progression.

So my number one concern right now (and please anyone weigh in if you have some wisdom for me) is of a spot that was partially punch biopsed on my abdomen. It had initially been diagnosed by a derm. (At yearly) A few years ago as a solar lentigo but what was concerning to me is when I felt it had changed. Well the doctor who did the punch biopsy used a 5mm punch on a (per his clinical notes) “6-7mm” spot. Meaning that he would have stitched up the remaining pigment/cells. The pathology report read no melanocytic proliferation, mild hyperplasia, no significant atypia, focal necrosis due to trauma (I had rubbed it) but no definitive diagnosis as to what the lesion actually was which was a bit odd to me. I am uncomfortable leaving the rest of the pigment in there in concern that there may have been cancer cells missed. I have contacted a specialist who said he can see me in April but I am so uncomfortable waiting another three months as it has already been 3 months since that biopsy.  

Can anyone advise me? To have the area completely cleaned out? Or would there be any point in that now, if something was left behind that was abnormal it would have already spread? Would re-excising that area cause more harm?  I know you are not medical professionals and again I apologize if this seems insignificant. Thank you

Amanda

Login or register to post replies.

Dave61184's picture
Replies 10
Last reply 1/18/2019 - 11:00pm

Hello everyone.  Hope everyone doing well and keeping up the fight. Praying for everyone.

Not sure if you remember me but was diagnosed stage 1a July 2018. I had some biopsy’s done and my dermatologist says I’m fine I just had some moderate atypia one. “JUNCTIONAL AND LENTIGINOUS DYSPLASTIC NEVUS WITH MODERATE ATYPIA, LIMITED MARGINS FREE” dermatologist says we have clear margins and we are good.  

But finally got pathology and it has a Description that is bothering me cause I googled.

”The epidermis shows lentiginous and junctional melanocytic hyperplasia” .......I read that this can be used for melanoma  in Situ. There is more in description about it but this stood out.

no where on path talks about Situ and I would hope that the dermatologist know what he talking about.

i was wondering if anyone had this description before and knew about.  Was going to contact dermatologist but I think I’ve been driving him crazy with all the questions.

just don’t know I’m I’m looking into to much. I just know the mental mind games is hard on me. 

Thanks for looking. Prayers for all.

David

Login or register to post replies.

I'm already on 300mg of fentanyl with available oxycodone 30mg for overflow every 4 hr as needed. Well for awhile it was finally enough the pain was finally being managed and I could come and have a semi-normal day. Well my pain has gotten a lot worse this week and I just had a CT scan and x-rays so I know I have progressed but not in those areas. But my pain has been back to a 4-6 almost all day this entire week.

I have already been approved for an intercostal pain pump which is basically my next step if I want any other form of relief. And before anyone suggests it, yes I am an active cannabis user already, it doesn't come close to touching what I got. It helps relax amonst other things but pain not anymore, my bones are just too eaten up.

So, my question is experience? Anyone else on the board have this procedure and were you happy with the results? Any reasons that I shouldn't get it?

I'm starting to get this strange feeling that there may not be an exhorbarant amount of time left and I definitely want to at least be comfortable enough to enjoy time with my family.

- - - Never Giving Up No Matter How Hard This Gets - - -

Stage I Survivor Since Aug 2009, Stage IV Warrior Since Apr 2017, #AldrichStrong Since Apr 1983

Login or register to post replies.

chrispl1974's picture
Replies 6
Last reply 1/18/2019 - 6:59am
Replies by: chrispl1974, Anonymous, Joycem, Johnjk04

Dear all,

As you can imagine , I am devastased. I went to my dertamologist here in Germany and he was suspicious from the beginning and cut the thing out my right thigh (black spot about 6mm in diameter and slightly raised) and sent it in for tests. Results show the following (translated from German)

Location, Right thigh, patient male 44 years old.

1. SUBTYP: Nodular melanoma
2. CLARK LEVEL: III
3.  BRESLOW THICKNESS : 1,6 mm. 
4. Growth: Vertikal
5. MITOTIC RARE 1 per mm²
6. IMMUN RESPONE : None 
7. ULCERATION : None

RESULT CLASSIFICATION --- pT2a      R0

As you can imagine , I have been reading like crazy. next week I will get further tests in the hospital and they will check the Lymph nodes and beyond.

The dermatologist told me that the MIOTIC Rate of 1 per mm2 is a good sign.

What are my chances that the nothing has spread and wont have nodes or organs affected  ?

Thanks for your suggestions. Stories of others with a similar initial diagnosis are also very much appreciated.

Love

Chris


Login or register to post replies.

GeoTony's picture
Replies 9
Last reply 1/17/2019 - 6:34pm

Hi Ratties

I've been offered the opportunity to participate in the clinical trial below, Phase 1/2, involving Interleukin 8 and Nivolumab, the theory being that a reduction in IL-8 will improve the Nivo efficiency.

https://clinicaltrials.gov/ct2/show/NCT03400332

If anyone out there has any experience of this trial or insights/thoughts I'd love to hear them.

 

Thanks

 

Tony

 

 

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

Login or register to post replies.

I noticed a single vertical streak on my right big toe on November 6.

It was very noticeable and unusual so I googled "vertical line on big toe" and got hits for splinter hemorrhagen, melanonychia, and subungual melanoma.

I checked on splinter hemorrhages and it did not fit. No known trauma to my right foot or toe nail that I recall. No change in usual habits in activity to indicate trauma and the light black thin line has not grown out at all in the past 3 months and 10 days.

Looked at melanonychia and subungual melanoma. The line seems to be darkening and getting a bit wider but not by much.

I have a referral to a specialist but my worry is being misdiagnosed because all the research literature I've accessed is based on advanced cases and the presentation of the melanonychia is significantly different in size and darkness.

In any case, has anyone been diagnosed with subungual melanoma at its very earliest stages?

The line on my nail is light black and vertical right in the middle of my big toenail. It is about 1/4 of a mm in width and runs the full length of my toenail from the back of the nail plate closest to the front edge of toe.

So far two GPs have seen it: one has not seen anything like it before and the other is of the mind that it is nothing to worry about.

Maybe she is right and I am spending too much time on something that is harmless?

It would be nice if this forum had the capacity to upload pics so we could have a visual reference for comparison.

Login or register to post replies.

lkb's picture
Replies 1
Last reply 1/16/2019 - 9:58am
Replies by: BrianP

I'm about to start the drug trial linked below for an intralesional with immunotherapy. I think I'm getting excellent care and I have immense respect and appreciation for my doctors. Just wondering how I should feel about one of them having disclosed a financial interest in the trial. Thank you in advance for weighing in.

https://www.ncbi.nlm.nih.gov/pubmed/29064334

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met.

 

Login or register to post replies.

Summer S.'s picture
Replies 9
Last reply 1/16/2019 - 5:08am

Hello everyone, 

 

My mom is new to Zelboraf, it is known for the possibility of causing new skin malignancies including new melanomas. 

Where we live,  melanoma is extremely rare and dermatologists never experienced working with it. 

Thus, I am wondering what are the regular skin checks you guys do are like? How are they conducted? Are you self-examined or examined by a dermatologist? How often? And do you find it effective? 

((Especially for those of you who are on Z, or similar targeted therapy)) 

 

Thanks! 

Login or register to post replies.

kannevans's picture
Replies 2
Last reply 1/17/2019 - 1:57am
Replies by: SOLE, WithinMySkin

Hello everyone, 

I got an MRI on my foot last Monday because I have so much scar tissue on the bottom of my foot from surgery it is hard to tell if anything is there. Well I called today to see if they got my results and she said I need to come in. The report said “Within the plantar soft tissues between the first and second digits there is cutaneous and subcutaneous T1 effacement with only intermediate STIR signal within this region. Diffuse enhancement is seen throughout this region. This extends dorsally between the first and second digits extending to the dorsal aspect of the proximal second digit. This is somewhat amorphous in its shape without clear margins. This all immediately underlies the cutaneous market placed in the plantar aspect of the foot. No definitive wound. The flexor and extensor tendons are unremarkable and appear uninvolved. The musculature of the forefoot is within normal limits.”

i have an appointment Friday morning but if someone can give me any kind of insight I would appreciate it. If the melanoma did come back will I have to go through surgery again when I’m already on treatment? 

Thank you in advance!!!!

kris 

Login or register to post replies.

rinzula83's picture
Replies 5
Last reply 1/16/2019 - 3:40pm

Im a freckled blue eyed redheaded stepchild, and I have melanoma. Unfortunatly I can not find one single article or survivor story about managing melanoma AND having freckles. You would think there would be a managing melanoma with freckles article or some scholarly article about how to access it or how to not go crazy when your covered in freckles and 20% of them are activly trying to kill you. What will keep me from begging my dermatoligist from cutting them all off? I have taken good photos of each one before biopsy and made a 8x10 of all the ones that were severe or insitu, and i keep it handy, but they look nearly identical to so many freckles that i have all over my body that it is disconserting. any body that finds an article or success story please share it, i have spent hours reading and i can not find one. Thanks 

Login or register to post replies.

Pages