Melanoma

A support group for anyone affected by melanoma to come together, share experiences, and ask questions.

Hospitalised after second ipi/nivo

Sailor2
Posted by

Hi KTatHome

You are getting to know me well! 

The wonderful ladies at the hospital were happily a major distraction - just got to love a girl in a uniform!

As for music, this version of Jimi henrix Hey Joe is amazing.  A new take on a classic blues tune.  The intro is interesting but a little slow, but as the song begins to roll, its mesmerising - at least to me!

https://www.youtube.com/watch?v=8NShOQnlNEw&feature=emb_title

J

Don't wait for your ship to come in, swim out and find it!

Sailor2
Posted by

Yeuch!

Now the pills which control the Immuno side effects are causing their own... I couldn't feel my left foot for five hours today - not really painful, and still OK to walk, but this added to other aches pains and fatigue is a bit of a drag.

I'm back at the hospital for a review and checkup on Thursday and my new favorite doctor has a plan to "manage me through this".

Fingers crossed.

How  are you all doing?

J

Don't wait for your ship to come in, swim out and find it!

KTatHome
Posted by

Hi J (), that left foot thing seems really strange, I was just thinking my husband has two left feet! 

I will be thinking of you, and need to know how your getting on. 

I watched that music video the other day, it is a good version, and I assume if you can walk you can dance .

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Sailor2
Posted by

Hi KTatHome,

I will be sure to give you an update after my review but the "fix" might take a few days to work!

This article is not detailed but gives a good description of neuropathy. It should be called damnednuisanceopathy if you ask me.

https://www.medicalnewstoday.com/articles/147963.php#treatment

Its a little alaming when it happens.

J

Don't wait for your ship to come in, swim out and find it!

VeronicaP
Posted by

Thanks for all the helpful suggestions and optimism!

We finally made it home to North Yorkshire after 3 weeks, mostly in KCH. It was the day that electric lines came down north of York so LNER sent us by taxi from Doncaster and we were only 2 hours late!

Now tapering the steroid dose and coming to terms with waking in the night and having what they call “labile emotions” I.e. being on top doh. Also on prophylactic antibiotic just in case. He is pretty weak after the ordeal but determined to get fit again eventually. At the moment that means walking round the garden a couple of times a day.

Saw the oncologist last Thursday and she wouldn’t commit to what the future treatment might be until the steroid is finished. Next appointment is New Years Eve, I hope that is a good omen!

VeronicaP
VeronicaP
Posted by

Had a wonderful family Christmas and enjoyed food and drink. Steroids now finished and the consultant has okayed the 3rd and 4th ipi and nivo infusions to start in a couple of weeks. This time we will not hesitate to go straight to hospital if there are any symptoms. Went on our group walk for the first time since November 1st and managed 8 (flat and muddy) miles.

VeronicaP
KTatHome
Posted by

Hi , I’m so glad to hear this news, and 8 miles is amazing.

KT 

What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.

Sailor2
Posted by

Hi KTatHome,

A quick update:

My thyroid has returned fully to normal as far as they can tell from my blood tests.  This could be due to the meds, so the dosage of Cabrimizole is reduced to one pill daily and the next blood tests will reveal whether my Thyroid function remains "normal" with reduced help!

My left foot and leg have improved following the nerve damage from Ipi/Nivo, but are still causing problems.  The meds course -which were the steroids Presinole- are just about finished, and I had an MRI last Friday, so awaiting results during the next few weeks.

I am scheduled for my regular scans and awaiting a date so once these are done and reviewed I will find out whether the Ipi/ Nivo worked on that one off dosage that caused all the trouble.

Anyhow to more important things.  here's a tune!  Its from a band no one has ever heard of, but its been played more than 54million times on youtube. Enjoy!

https://www.youtube.com/watch?v=V5YOhcAof8I&list=PLouMBp6i2cO9rIT39Mnj-4ap93dOe1ZzY&index=7

J

Don't wait for your ship to come in, swim out and find it!