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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TexMelanomex's picture
Replies 1
Last reply 10/11/2017 - 4:01pm
Replies by: MovingOn

Ok Warriors, even though this might not apply to very many people on here at this time, maybe later down the road there will be warriors who it will apply to. So feel free to skip unless this has some relevance to you or you are just curious.

The PV-10 intralesion injections are interesting to say the least. I was going to upload the pic of the black-violet liquid in the syringes but I see that either it has to be posted as a link to the pic or I'm not savvy enough to figure out how to add a pic to the post. Take my word for it, it looks black because it is such a dark violet/purple color.

It was explained that for most small, subcutaneous lesions it burns a little and subsides during and after injection however, this would not be the case for me because the target lesion was large, hard, and in a "tough spot" (near and under my left clavicle). Well, Dr. Ross was spot on and this was not the case for me. I typically feel like I have a high pain "tolerance" and can mentally check out. I should also say that I have no fear of needles and prefer to watch injections, lab draws, etc. So, having said all that I would be dishonest if I told you anything other than it was quite painful. The sensation was a melange of buring, aching, and - if this makes any sense - like my entire shoulder and left arm bones were being broken. The feeling between injections (there were three, 5mls each) was more of burning and tingling in my shoulder and all the way down to my left hand. I felt a little nauseated during the worst of it, but luckily for Dr. Ross, his assistants, and the MDA janitorial staff I did not vomit. 

While the pain was pretty intense and different than any other pain I have previously felt, it does pass relatively quickly and becomes manageable within minutes of the injection being completed. I received the maximum "allowable dose" for this trial and I suspect if it had only been one injection it would have been less intense. Clearly my pain was obvious because it was offered to perform the next round in the OR under full sedation, but this would be overkill in my estimation since the pain does subside fairly quickly and I think if I just brough my best headphones and cranked up some Metallica to volume 10 I could probably do a little better with distancing myself from the reaction. I also don't want to have to spend an additional day in the hospital, a guy has to work to pay for all these treatmens afterall!

Afterwards, the site is bright pink/purple and your urine becomes a pink/rose color (nobody told me this beforehand so I freaked out a little thinking it was blood in my urine, it wasnt). The site, now at the roughly 22 hour mark is sore but nothing terrible.

I don't want to give anyone the impression that other intralesional therapies are painful (people have already posted to the contrary) or even that the needle itself was painful, it wasnt. I do think that had the dose been smaller or the lesion in an area with more adipose tissue or perhaps not so close to bone, this wouldn't not have hurt as much.

Other than the staining of the area where it is injected, a little soreness, and of course the rose pee there aren't really any remaining side effects from the injection. 

Taking all of this together, I would not discourage anyone from doing this procedure if it is offered or becomes available in the future if it is approriate. The company that makes PV-10 is called Provectus so it might be worth keeping an eye on their company and the research that follows. To steal a term from Bubbles, I am happy to be one of their "ratties". If anyone has questions about this please feel free to post or email me. Also if someone can tell me how to post pics I'd be happy to post those or a link to them. 

Best wishes to all,

Tex

Tex

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/12/2017 - 5:24pm
Replies by: sister of patient

Hello all ,

 My two year son has had a black mark on his big toe right foot for around 4 months I never gave it any concern, just thought it was a bruised toe when it was taken ages to go away again I just put it down to a bruised toe nail . My son had never indicated to me that he had ever hurt his toe , also at no point is it sore to touch red or inflamed. On Friday I noticed that it had changed shape it was now growing downwords towards the nail bed and actually at one point it's clearly on the nail skin fold  . So because It's clearly got bigger and it on his skin and not the nail I took him to see the nurse . She says it " looks not good " but will get a GP to have a look GP agrees she does say to me she has never had to refer a child this young to a specialist and explain to me he will need a biopsy.

 

so now I am terrified waiting on someone to contact me been told it won't take longer than two weeks but two hours right now is feeling like a life time . I have done some research and it's definitely not a streak more like a very poorly drawn and rough rectangle/circle it only comes past his nail on one point and it's no bigger than 3 mm . It's also a very dark deep black colour no other colours does fad very slightly when you look properly at it around the edges .

just looking for guidance advice tips help knowledge anything . Cheers 

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TexMelanomex's picture
Replies 8
Last reply 10/11/2017 - 12:46pm

So, I thought I would do something a little different. I realized that there are so many unkowns to all of us as we go through treatment and it might be helpful to some to shine a little light on one of the unknowns, at least as I experience it. So, I will be logging my first Pembro (Keytruda) infusion so that people might know a little more about what to expect.

1700: Taken back into my infusion room at MDA, much better than I anticipated since I thought I would be sitting in a chair amongst several chairs and IV trees. Adjustable bed, TV with on demand movies, warm blankets, pretty swank!

1705: Saline drip started while awaiting pharmacy delivery of Keytruda.

1715: Keytruda arrives and let the healing begin!!

1720: Nothing noticeable, no weird tastes, burning, or sensations. Nothing noticeably different from the Saline drip.

1730: My hair turned neon green and I have x-ray vision now! Ok, not true. Still nothing noticeable.

1735: Room service cruised by and gave me a sandwich and chips with drink...now this is more like it. Turkey on wheat, Jack Reacher 2 playing, and WiFi signal quite strong.

1745: About to wrap this up and hoping room service will make one more pass :-) Still nothing in terms of reactions or really anything, at all.

1805: Well that concludes installment one of the "Live Feed". If any of you are worried about Keytruda infusions, I can tell you based on what I just experienced, the infusion itself is very, very, unremarkable and I pray that the results are quite the opposite!  I will post later about the PV-10 injection...whole different animal that was!

 

Tex

 

 

Tex

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Anonymous's picture
Anonymous
Replies 7
Last reply 10/16/2017 - 1:48pm

Ok, I am not the best patient in this world. I am really anxious and I am really not good at coping with health issues. Yesterday I went to a dermatologist (specilized in skin cancer) to check some dark spots on my face. Well those were nothing but I asked her to check a couple of moles and she found a slightly atypical mole I think I had for years but to be honest I am not sure if it changed recently or not.

She didn't seem concerned but she did a biopsy and now I have to wait. 

 

What I don't understand it's the language she used on the paperwork she gave me. Is slighlty atypical nevus a technical term (is there an official scale or what) or just a random description?

 

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brewgirl68's picture
Replies 2
Last reply 10/10/2017 - 7:08pm

Good afternoon, everyone - 

I'm 32 months NED after IIIc, right axillary lymph nodes, no known primary. I had a CLND, no adjuvant treatment (nothing was available except for interferon - no thanks).  No symptoms since then - I've continued to feel good! 

I've been on 6 month scans since surgery, with yesterday being the last one before we go to yearly scans. Good news: the end result of the report is NED. Slightly worrisome news: a small "lesion" on my right kidney that is "incompletely characterized". From the report: Stable 10 mm hypoattenuating cystic lesion in the midpole the right kidney, likely representing a cyst although incompletely characterized. No hydronephrosis.

So...I know there is a correlation between melanoma and renal cancer, but I'm not jumping to the conclusion that this is cancer. As the report says, it is "likely" a cyst - but then again, it's not FOR SURE a cyst. And without further investigation of this lesion, how can the report end with "IMPRESSION: No evidence of recurrent or metastatic disease in the chest, abdomen or pelvis"? 

Does anyone here have experience with this situation?  

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Coconnor16's picture
Replies 3
Last reply 10/9/2017 - 11:35pm
Replies by: Toby0987, jennunicorn, Anonymous

After 2 successful results and 1 1/2 years of treatment on yervoy my latest scan showed a 9-10 mm subcutaneous mass in my right buttocks. Can a tetanus  injection I had 2.5 weeks prior to the scan be the answer?? 

Please help if possible.

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Irishone21's picture
Replies 6
Last reply 10/12/2017 - 9:22pm
Replies by: Irishone21, SDFun, Janner

Hi,

I am new to all this. Had a shave biopsy a month ago that came back as melanoma. Path report lists the Breslow thickness 'at least .44' and the Clark level 'at least III'.  Four days ago I had the tumor out (not the WLE), &  in 2 weeks I go back to get stitches out & find out what's next.

My question is: how accurate is this due to having a shave biopsy and do I assume that those numbers will go up since it was only a tiny piece of a pretty large spot?

Thanks!

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Jayming86's picture
Replies 5
Last reply 10/10/2017 - 1:33pm
Replies by: obtu.bt, Jayming86, Threefitty, Anonymous, Ed Williams

I'm 31 with stage 3b, fully resected, NSD.  I'm waiting for my gene testing to determine if targeted therapy is an option.  If not I'm suppose to wait for the nivo vs ipi/nivo trial to start for my adjuvant therapy.  It's been tough to say the least, but I'm pushing on with the fight. My question for y'all is there a possibility that after treatments there won't be a recurrence?  I understand everyone is different, and my chances of recurrence are high.  I just want to hear if there is a story of such a situation.  Also, how long should I wait for the nivo vs ipi/nivo trial?  Should I just do the yervoy since I can do it now?

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Raeofsonshine's picture
Replies 3
Last reply 10/11/2017 - 12:30pm

Hi all!

14 month post WLE and CLND.  Stage 3a.   Was followed up with pretty closely the last year.  Last PET was June.  A little "hot spot" appeared in the outside of my calf about 6 inches above/ right of my WLE.  Had an MRI and was told they thought it was nothing.  A couple of weeks ago I started to notice a pea size lump in that spot.  Anyone here have any experience with intransit mets and any insight to offer?  

Thanks much!

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iskitwo's picture
Replies 5
Last reply 10/10/2017 - 10:12am

I am a year out from diagnosis stage 3A. I had two primaries one on left chest and one on left middle/ lower back. We are doing scans and watching. So far all scans have come back good until this last scan and it said "There has been development of a 5 mm nodule within the left lower lobe. No pleural effusion is seen." Doctor said we would rescan in 3 months and see if there is growth. He mentioned that it was still very small and in a bad location to biopsy. How concerned should I be at this point? 

Missy

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Anonymous's picture
Replies 4
Last reply 10/27/2017 - 4:57pm
Replies by: Twhite00000, Anonymous, MovingOn, Mat

So it looks like this may be the end of the road on Keytruda for me. I’ve had a more than 50% reduction in my Mets (mostly the lungs, liver and lymph nodes) on Keytruda, but recently had a medium sized new met pop up in a lymph node, possibly more than one. Looking at my options (based on doctor conversations and lurking), i see

1. Braf/mek inhibitors

2. Chemo or biochemo

3. TIL (although it’s unclear whether my Mets are harvestable)

4. Ipi + maybe Nivo

5. A pd-1 + experimental agent (lag-3, HDAC, IDO....others?) clinical trial

6. Something I’ve not heard of before - systemic vaccines? New mabs?

has anyone here had a durable CR after failing a year of Keytruda (that would be FANTASTIC to hear!)? What did you do? Anybody get a mixed response or durable remission afterwards? Any suggestions from the science-minded folks on here? Honestly BRAF targeted therapy is not very attractive to me since the disease is moving fairly slowly at the moment. I am not pain and/or brief misery averse.

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/8/2017 - 11:54pm
Replies by: ldub

I had a squamous cell taken off my leg earlier this year. I went back in last week for a six-month recheck and pointed out a pink spot on my arm. The dermatologist said it looked like a basal cell so she biopsied it. She called Friday to tell me it's an amelanotic melanoma. Stage 1 and 0.5 mm on Breslow scale. She's sending the biopsied skin in for a DecisionDX gene testing. While I know it's an early stage, and she doesn't recommend lymph node testing, I'm pretty much freaking out and my anxiety is increasing greatly over the weekend. The WLE is set for October 17. Here looking for support and guidance. 

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Rebeck88's picture
Replies 5
Last reply 10/12/2017 - 11:25pm
Replies by: jennunicorn, Rebeck88

Does anyone know how to get an appt at UCSF sooner than a month away? My 68 year old father was just diagnosed with metastatic melanoma with unknown source. Even his surgeon thinks this is an urgent case. How can we get in sooner? I'm going to start calling every morning on Monday hoping to score a cancellation. Any other suggestions?

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Anonymous's picture
Anonymous
Replies 8
Last reply 10/9/2017 - 11:43am
Replies by: Anonymous, Christinad, Bubbles

Hi all! Just wondering...has anyone else experienced family running for the hills upon hearing of a diagnosis? When my son was first diagnosed about a year ago, the in laws stopped over once right around the time of his first surgery and proceeded to cry as if he were dying - so not exactly helpful, but at least it seemed they cared. Since then, nothing.  We’ve recently tried to improve the situation and outright suggested that a call once in a while would be so helpful. That request was met by outraged excuses that they are too busy,they don’t like making phone calls, and that “why call for bad news?”. I understand that everyone has different coping skills in tough situations, but it’s harder to be understanding about that when it’s not me being hurt - it’s my son. While I hope no one else has experienced  this kind of abandonment , a little advice on how to improve things would be appreciated. 

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J.bun's picture
Replies 3
Last reply 10/10/2017 - 2:59am
Replies by: obtu.bt, J.bun

Just wanted to give a brief update on things since my groin lymph node removal back in August. First of all - how is it already October? Time has really blended together for me this year with so much focus on different treatments and recovery. 

Surgery went well, and I can’t say I used my time on medical leave as “wisely” as I would have wanted - but did get to watch a few series on Netflix and just rest.

My pathology report was excellent (attributed to Taf/mek I took in the two weeks leading up to surgery). In terms of recovery - I love and live in my knee high compression stocking. I started wearing it about 3 weeks after surgery. Then, when I got my drain out - started wearing Spanx shorts - which have helped immensely in swelling reduction.  I do look forward to when I won’t need to wear it all, but it has not been too much of a nuisance and I can still feel a bit of fluid where it doesn’t belong. 

I also made sure to start physical therapy 1x week - recumbent bike, manual massage, and taping (not bandaging) to prevent lymphadema and get fluid going up.  

I’ve also had 3 rounds of Keytruda since surgery - thyroid numbers are starting to change, but not feeling any different so far. 

Best wishes to everyone in their treatment. 

- J.

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