Call out for UPDATES! How are you doing?

This moderated forum is to support the needs of patients with stage IV melanoma, as well as to answer questions about treatment options and what to expect.
LisaB
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Re: Call out for UPDATES! How are you doing?

Post by LisaB » Thu Sep 06, 2018 10:17 pm

Hi everyone.I am doing good.Diagnosed 2 years ago with Stage 4 Melanoma that was never found on my skin..I had my tumors resected and had 24 Keytruda treatments.I now have scans every three months.I have had a brain MRI , a CT of the chest, abdomen and pelvis in the past two weeks and all was clear! Only new thing is a freckle was found in my left eye, toward the back , that wasn't there two years ago , so I will go back in October to have that looked at again.If anyone has any experience with this please share.God bless you all.

Catherine Poole
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Re: Call out for UPDATES! How are you doing?

Post by Catherine Poole » Fri Sep 07, 2018 6:26 am

Great report Lisa! Sometimes freckles or nevus are found in the eye and they are nothing to worry about. People who have a lot of moles (nevi) sometimes have them show up in the eye with no further consequence. I would make sure you are followed by an experienced opthomologist to keep an eye (sorry) on it. Good news though.
Catherine M. Poole, President/Founder
Melanoma International Foundation

LisaB
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Re: Call out for UPDATES! How are you doing?

Post by LisaB » Mon Sep 10, 2018 3:11 pm

Thank you so much!

Respman
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Re: Call out for UPDATES! How are you doing?

Post by Respman » Thu Sep 27, 2018 2:50 pm

Hi Lisa,

I'm Stage IV melanoma. My recent PET showed that I am in early remission ( :D ) but I recently went to have my eyes checked and I had a small hemorrhage and a cotton wool spot. They didn't seem too concerned. It wasn't in a place that would affect my vision and they thought it might resolve itself eventually. I have had so many side effects from the Zelboraf and Cotellic that I am assuming it probably has something to do with that. This targeted chemo worked wonders on the melanoma, but it is miserable. I hope yours is nothing serious.
Jim D

Catherine Poole
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Re: Call out for UPDATES! How are you doing?

Post by Catherine Poole » Fri Sep 28, 2018 7:15 am

There are eye issues with this combo and I don't know if there would be less with another. You can sometimes take a vacation from the drugs and then resume them again. I agree, the side effects can be miserable.
Catherine M. Poole, President/Founder
Melanoma International Foundation

DickK
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Re: Call out for UPDATES! How are you doing?

Post by DickK » Sat Sep 29, 2018 6:01 am

Catherine makes a good point about vacations. I am on Zelboraf (vemurafenib) and was having issues with my liver. I took a few one week vacations and also reduced dosage from 960mg 2X daily to 720mg 2X daily. That all happened a few years ago and at 8 1/2 years in, liver is still watched closely but has not been a problem.

Respman
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Re: Call out for UPDATES! How are you doing?

Post by Respman » Wed Oct 03, 2018 6:04 am

We reduced Cotellic to 2 pills Qday and just reduced Zelboraf to 3 pills BID. Still having bad itching all over and nausea off and on (and of course the sun hates me), but that is all now. Don't know how far we can go.
Jim D

Dianap
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Re: Call out for UPDATES! How are you doing?

Post by Dianap » Sat Nov 03, 2018 7:54 am

Hello Catherine,

My heart felt sympathies are sent to you following the loss of your husband. I hope you are finding your way through this difficult time, as you helped so many people through this site.

For myself this site gave me my life back, as without it I would have not of known of the new immunotherapy treatments that became available as the grim reaper came knocking at my door.....

Having had no other treatment than one course of ipilimumab with tumours in pancreas, lung, bones, lymph and brain (one resection plus two/three mets) I, so far, has been a success (touch wood hate typing that statement].

I am now trying to make a decision of only being scanned 12 monthly (CT head/body no dye due to intolerance) as suggested by my Consultant. I am being told that once 3 years out with no relapse there is reasonable evidence you shouldn't relapse. Apart from a CT scan 6 months ago blood tests haven't been carried out for a year. Personally my gut still feels this is a big ask of one course of ipi at my late stage.
Unfortunately, data hasn't been produced on a few hundred 'Diana's' if you get my drift :)

On a positive I remain very happy near the coast in Norfolk, UK, still with my lovely two springer spaniels, garden, veg plot, green house all those things that help keep you fit and healthy (I hope Catherine all your animals are well and keeping you busy) plus now have three grandchildren born since my cancer and my youngest son is getting married in February, so no complaints.

My apologies for not staying in touch regularly, but I blame you Catherine for giving me my life back :lol: ;)

Big hug and thanks,

Stay well XX

Diana

Catherine Poole
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Re: Call out for UPDATES! How are you doing?

Post by Catherine Poole » Tue Nov 06, 2018 7:46 am

Diana, I was just in Manchester for a melanoma meeting! Not sure how close I was to you. I am so happy to hear you are well and thriving no less. I would love a greenhouse! I grow lemons and oranges inside in the winter. Thank you for your kind words. Thanksgiving in the U.S. the 22nd of November marks a year since my husband died. I've been working through the grief and it is hard work. I think of him healthy and fun, not ill and suffering. I just heard Ted Turner has the same disease and all of his money and power won't help. But on the bright side if there is one, he is out of pain now and I will keep his spirit alive in my heart.
I'm most thankful for new therapies in melanoma and what a difference it has made for some. I hope we keep learning more so everyone will benefit. Have fun with all of your wonderful times.
Catherine M. Poole, President/Founder
Melanoma International Foundation

Dianap
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Re: Call out for UPDATES! How are you doing?

Post by Dianap » Wed Nov 07, 2018 12:33 pm

Well Catherine, in American terms not that far....4 hours drive. If you ever find you have a spare day or so on a UK trip then please get in touch. Our beaches are some of the best in the UK, sandy, long, with big wide skies and not many people...ideal!

It must be very hard staying positive when loosing someone you love so much. I am sure you did everything you could to support him and regrettably there just wasn't the treatment available. Life can be such a !!!

I am going to agree to a yearly scan. Fingers crossed.

Stay strong and hold onto all those good memories. XX

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