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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SABKLYN's picture
Replies 10
Last reply 11/12/2018 - 5:47pm

Just wanted to wish you good luck and a successful procedure on Monday!   I’m sure you’ll have the full weight of prayer and good wishes from all of the crew of the MRF Pirate Ship!!!

speedy recovery, my friend.

Best,

Stan

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RichInLife2's picture
Replies 5
Last reply 11/10/2018 - 8:49pm
Replies by: RichInLife2, lkb, Linny

I had my scan yesterday and finally met with my oncologist today. The report from the scan was very good news. There was nothing new in the scans and all existing tumors have shrunk or remained the same size, and the ones that haven’t shrunk may not be tumors. After discussing with my oncologist we decided to continue with Opdivo. The thinking is that the damage to the beta cells in my pancreas is already complete, and that any future damage to my endocrine system is treatable with hormones. Besides, the Opdivo train will probably continue rolling anyway even if we do stop treatment now. Basically, I’m trading a disease that is probably fatal for one that is treatable. 

I’m still in hospital trying to get my new friend diabetes under control, but I’m feeling better and hope to go home later today. A very stressful and tiring week, but overall things are looking very, very up. 

 

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/10/2018 - 7:53pm
Replies by: lkb, guynamedbilly, Anonymous

I am really scared.

I had a melanoma removed in february this year and i have a movable eubbery lump in my groin. Its smooth and doesnt feel fixed or hard and its right on my hip bone where my leg joins my body. So my question is what are peoples experiences of cancerous lymph nodes?

How do they typically present and feel? Do they appear to grow slowly/quickly etc?

Im ringing the nurse tomorrow but a bit freaked out =/

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mortalMike's picture
Replies 4
Last reply 11/12/2018 - 10:03pm
Replies by: mortalMike, lkb, casagrayson

Thank you Lord. Just got off phone with my doctor and he said the nodes came back negative and that he got all of it when he carved me up.

You guys have been soooo much help and comfort. Thank you all very much. I will point people to this site that have problems with this stuff. Question: I have been officially labled as someone who had a cancer growth. They say it has been cut out. Where did it come from and is it really gone or is it just that patch of skin thats clean for now?

I hope you dont mind if I stick around for awhile. 

Respectfully,

Mike

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mortalMike's picture
Replies 2
Last reply 11/8/2018 - 5:09pm
Replies by: mortalMike, ed williams

Hello folks,

I had the SLN test and the surgery Monday. The test itself was ok. (by that I mean as far as pain) Minor stinging. The guy (kid) doing the mapping said the closest nodes to the hole my dermatologist left in my chest and where the (draining) was going was on my left side neck/collar bone. The surgeon took 2 nodes out there for pathology. He then made that hole even bigger, pulled it together and stiched it. I've got about 3" stich job. Gotta say the end of the world could of happened and I would not have known. Woke an hour and fifteen mins. later.The first night not bad at all except the bandage is so tight it keeps me looking down. Next day my neck where he took the nodes was hurting and making my neck sore. 

Its been 3 full days since surgery now and am going to change bandages tonight. Node place is still hurting. For such a little cut it sure is uncomfortable. Surgeon said everything went fine and said " the nodes looked fine and normal". I guess thats doctor pep talk until the pathology results come in, right? Still havent heard anything about that yet. As you can tell I'm talking alot, nervous. Will let you all know as soon as I hear something.

Once you get the melanoma diagnoses and they cut it out and the pathology comes back negative are you done with it or are you just waiting for it to hit again? Ok, I'll shut up for now.

Mike

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Anonymous's picture
Replies 3
Last reply 11/8/2018 - 5:25pm
Replies by: Janner, Anonymous

I need some clarification. I had a mole shave (not punched) biopsy from my back by a dermatologist in September 2018 and her pathologist diagnosed it as a "Severe abnormal mole." I decided to go to a second dermatologist where I had it completely excised and received clear margins. Nothing alarming came back on the pathology report after the second dermatologist excised it, they just told me it was gone. The second dermatologist then had their pathologist (who only looks at skin apparently) review the initial slides of the shave biopsy and he diagnosed it as "Melanoma in situ." I'm not sure who/what to believe. It sounds like a difference of opinions with the pathologists. It doesn't change the outcome...it was completely excised, regardless, and I need to watch myself closely and do 6 month follow ups. Right? I’m just confused as to why one pathologist would call it severe abnormal mole and one would call it melanoma in situ. Is there a difference?

Danielle Wilcox

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Scooby123's picture
Replies 22
Last reply 11/10/2018 - 5:45pm

Hi all been today for my results no evidence of disease. So can breath a while . Thanks for support. Xxx

SCOOBY x

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gregor913's picture
Replies 3
Last reply 11/8/2018 - 3:28pm
Replies by: lkb, jbronicki, Newmanbell

Hello all my melanoma warriars just wanted to bring a positive story to this forum. When I was newly diagnosed I would like to read these stories and also the information I learned from reading this site about this disease was immense. Thank you for this site.

I was diagnosed at 34 with stage 3b ulcerated melanoma in Oct 2015 on back. Did 4 rounds of Yervoy 10mg after having it resected with a clnd. Got really sick during treatment and was in hospital for over a week.

3 years N.E.D.

Trust in God and stay positive!

Gregory

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RichInLife2's picture
Replies 7
Last reply 11/10/2018 - 8:54pm

Well, it happened. Just when I was getting all cocky about having no side effects after three Opdivo treatments, I go and get a side effect. Up until last Thursday, I was feeling great, although I was losing weight, which I attributed to switching to a mostly plant-based diet. Then Thursday and Friday, I start feeling tired, I’m thirsty and I’m urinating frequently. I thought the frequent urinating was due to my BPH, but I wasn’t sure about the fatigue and weakness. Saturday and Sunday were each progressively worse and by Monday I contact my care team at DFCI. They have me come in, test my blood and tell me my glucose is 672. Good news, they know what caused my symptoms; bad news, I now have type I diabetes. 

I’m currently in hospital (just transferred from ICU to gen-pop) while they try to stabilize my glucose levels. I now have a new member of to add to my care team. I met with an endocrinologist here (I hope to find one more local to me, if that’s possible) who tells me I’ll need to control my glucose with insulin shots for the rest of my life. I’ve met a lot of nice nurses and doctors here, but I’ve yet to receive a visit from my primary oncologist (yes, I’m pissed). 

So now, I’m facing the probable prospect of being taken off Opdivo. I’m not sure what comes next, but I’ve read many trials exclude diabetics. 

So, while I wait and wonder, has anyone else developed diabetes while on anti-PD1 therapy? Where did you go from there?

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VinceMart's picture
Replies 2
Last reply 11/7/2018 - 10:37am
Replies by: doragsda, cjm22

Hey guys, can anyone tell me what to expect about life after gamma knife anandd ipi  nivo.  Will i be able to return to work and normal life activity?  

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juliaT's picture
Replies 1
Last reply 11/8/2018 - 9:12pm
Replies by: maryb-z

Hello everyone. First of all, big thanks to everyone for being part of this amazing community. It's a great place to find resources and share your experiences.

I have a bit of a technical question regarding nivolumab dosing/protocol. Hopefully somebody will be able to answer. I recently started receiving nivolumab as an adjuvant therapy for resected stage IV melanoma. In my institution the dosing regimen is still 3mg/kg 60min infusion every second week (I'm getting 260mg in total). Nivo is diluted in 50ml 0.9% sodium chloride IV bag. After the infusion IV line is flushed with 25ml sodium chloride. I found various protocols online which state that nivo dose should be diluted in 100ml sodium chloride IV bag (instead of 50ml) and then the line flushed with 50ml sodium chloride instead of 25ml. Is there any substantial difference between the two protocols in question and is one more preferable than the other? Thanks in advance for your help.

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Firstly thank you for reading my message!

I am a 38 mum to do young children and currently understandably scared with my diagnosis today.  However being the positive person I am I want to find the positives in what seems a scary melanoma world.

My results are as follows:

Excision right breast 25/10/2018 RUH BATH, ENGLAND
Diagnosis of Nevoid Melanoma pT3a.
Breslow Thickness 2.3mm
No ulceration noted
There is no evidence of microsatellite or vascular invasion.
Nearest peripheral margin 1.5mm
Nearest deep resection margin 4mm clear
TNM 8 pT3a
AJCC IIA
Referral to Southmead Hospital, Bristol, England for 2cm WLE and +/-SLNB

 

I think I understand the majority of what the above details, but not sure on TNM 8 or if any of the above gives an indication if this cancer is a quick spreading/ aggressive cancer.  Any help you can offer me would be gratefully received!

All I want to know is that I will see my children grow up, which I know cannot be answered, but can anyone give me statistical hope?

Hoping the lack of ulceration is a good indicator and that I feel generally well is a good sign.

Any advice, help or tips on umderstanding and improving my chances are gratefuly received.

 

x

 


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sharonlynn210's picture
Replies 4
Last reply 11/7/2018 - 4:32pm

Just recently my son has ask about medical marijuana.He is having anxiety and a loss of appetite.He will be having his 12th infusion next week of Keytruda.I have read that combining would be counter productive.I do not want anything to stop the Keytruda from working.I am afraid to ask the dr because I do not want them to stop Keytruda.He is stage 3c.

Sharon

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mrhudgens's picture
Replies 2
Last reply 11/6/2018 - 2:36pm
Replies by: marta010, VinceMart

Good morning! I've been on Braf/Mek for about three weeks now, and the side effects are kicking my b*tt!  I've felt flu-like, sore all over, nauseaus, foggy, dizzy, blurry, sleepy, all at different times.  Has anyone else felt any of these to the point it affects their ability to go to work?  Does anyone know how long these things are supposed to last?  Thanks to anyone reading and taking the time to reply!

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cjm22's picture
Replies 2
Last reply 11/6/2018 - 12:08pm
Replies by: lkb, Bubbles

My husband's been on Taf/Mek since mid-April, and that worked brilliantly for about two months over the summer. His back pain came back terribly in early August and since then the docs have not been able to confirm the problem until the latest CT scan, which showed new lung nodules and a large liver lesion that weren't there 6 weeks ago.

His back and leg pain is clearly due to a soft-tissue lesion near his lumbar spine which is interfering with his nerves. They have done radiation there twice since April and the problem keeps returning. More radiation isn't an option, and of course Taf/Mek is now out too.

Our oncologist is looking into getting him on pembro and we might be able to private pay for him to go on ipi, too. It depends on what the province and our extended coverage are willing to cover for him. We're pressing for that since we think that's the best option still available to him.

He tried ipi/nivo in early April (just one infusion), but his cancer progressed so quickly that a week after the infusion, he was switched to Taf/Mek.

Hopefully this time the immunotherapy combo will work ...

It's tough since he's not really able to walk anymore. He spends most of his day asleep. His appetite is also decreasing.

He hasn't had a brain MRI for about 2 months, but I'm a little nervous what they'll find there, too. He's becoming more forgetful. I used to attribute that to his very strong painkillers (methadone and fentanyl), but after today's news, I'm not so sure. He has 3 very small brain lesions (last we saw, anyway).

Thanks for all your help and support. I don't post often but I think of you guys all the time. I've found some emotional relief posting in a private young adult caregiver group through CancerCare.org so that's where my angsty, non-medical posts end up a lot of the time.

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