O&V treatment - a positive update from ‘The Kitchen’

[Miu48]

Hello everyone,

Cycle #2 of O was a pleasure, I was treated to a relaxing aromatherapy reflexology session. Hats off to Guy’s Cancer Centre, you really know how to look after your guests…if you could possibly provide champagne and canapés next time, that would really tick the box 😉

So today was the last day of my initial 20mg of V. I duly toddled off to Guys for a blood test…popular place today, I had to wait ages. I certainly waited longer than I would have to get on the London Eye! A slight issue with waiting so long….we are told to drink lots of water when on V. Now I’m a firm believer in ‘trying’ for a wee before you leave the house. Even if you don’t think you need one! So, I’ve done bathroom visit prior to leaving home, I check in at Guy’s Spa and pop straight to the bathroom. Sat down and waited to be called, some time later, I need to visit the bathroom again. I don’t dare leave my seat, I’ve sat waiting for so long that I fear I may miss my name being called. When finally Im called through to the vampire cubicle, I’m so desperate I can barely keep still let alone make a fist so my vein pops! *note to readers…I’m calling it the bathroom because when I worked in the USA, Americans found the term ‘loo’ hilarious and unfathomable.

Later this afternoon I received a call from one of my lovely specialist cancer nurses to say all is fine in terms of tumor lysis….and to boot, my woeful haemoglobin of 76 has risen to 83! This is amazing news for me, I’m so pleased. Also, my platelets have risen from 120 to 173…For me this is a phone call that put a big smile on my face 😊

Clearly, these drugs are working and clearing the crap from my bone marrow to allow healthy cells some space.

Tomorrow is day 1 of my increased dose of V. I’ll be up to 50mg and hopefully all continues to go smoothly. If it doesn’t, I’m ready for it…I feel empowered and positive about my treatment.

I don’t know what the norm is in terms of specialist cancer nurses, but I have two that help me. I won’t mention their names as they may not wish me to. I have to say though, they are the most thoughtful and caring people I’ve ever met. One of them spotted me sitting at a coffee shop before my O treatment and stopped by to say hi. Shortly afterwards, she popped back to the coffee shop because she had been to the pharmacy to collect my medication and wanted to save me the trouble of collecting it. Such a kind and thoughtful thing to do especially as they have such busy and full on days.

Love and best wishes to you all.

Emma

[SofiaDeo]

Well, "HU for CLL" is a UK site, so use whatever term you wish IMO. Any US or AU visitor can Google any terms they don't understand IMO hahaha. Like I did the first time I read about Vegemite...

[Psmithuk]

You certainly are getting the best of the NHS, Emma, and I am very pleased to hear it. I just wish we could all have such treatment. I would have loved a relaxing session before treatment, and my poor specialist nurse is rushed off her feet trying to deal with two hospitals, so I don’t bother her with things unless I’m desperate. It sounds lovely, and I hope it is helping. Good luck with the rest of the treatment- keep us posted!

Chrisx

[Smakwater]

Glad it is working for you Miu48,

Gazyva is known for high percentage immediate manageable responses to CL in the peripheral blood. That is how it became best friends with Venclexta, who's job is to provide deep durable responses!

JM

[Hidden]

Miu48Love hearing this update!

Had to laugh at "bathroom" lol I am in US & it reminded me of teaching middle school. I had a new student from another state & he asked to go to the "water bubbler" (fountain). I absolutely loved it lol

Enjoyed your post! Take care

Cookie

[Poodle2]

Glad to read your update Emma! ❤

[studebaker]

I really enjoyed reading your post Emma. Your hospital and your nurses sound great!

Good luck on your journey and keep posting.

Dana