Starting treatment

Hi Roxyrock. Yes I’ve had splenic and retuximab. It’s honestly not too bad. Some people have a reaction to the first infusion but they know that and they are really careful with it. Happy Tom answer any questions you may have 

Hi Cattiewhitty

Thank you gir yiur reply. I guess my only concern is having the treatment during the spike in covid cases. All the information I was given about the drug dud say about a possible reaction with first infusion. 

How long ago did yih have your treatment and how are you feeling now? Was it successful? 

Thank you

Oh I'm sorry about the spelling my ipad likes to make up its own words!

Ha ha don’t worry about spelling. I had five sessions and then had retuximab injections every two months for two years. Yes it was successful, thank god. You probably know already but it’s a slow growing, low grade cancer. I had my spleen removed first. My Consultant hoped that wud be enuf but sadly it wasn’t and I had to have chemo x

I'm just having 4 sessions but they said I Dont need my spleen removed its around 20/21 cm.

I'm doing ok I also have sarcoidosis which attacks my immune system. So im staying positive and keeping my fingers crossed its successful. 

Thank you so much for your encouraging words!

I’m glad you aren’t having your spleen removed. The recovery was horrendous and I ended up with a blood clot in my stomach as well. The chemo was nothing compared to that.
Try not to worry, you’ll be fine. Easy for me to say I know but you will be. You’ll be monitored every few months after the chemo which is reassuring

Always happy to answer any questions that you may have

good luck xx

Good morning Roxyrock, a great conversation going on and Cattie’s experiences will be invaluable for you.

I did not have any spleen involvement but all my treatments basically stopped my spleen functioning so “it’s taking up space but we don’t want to touch it if we can get away with it” said my team back in 2015.

As far as your concerns with regards to Covid…. yes I totally understand but in reality when your immune system is down you are at risk from lots of infection risks so you will follow the steps you would follow regardless if Covid ever existed by risk assessing who you come in contact with, where you go etc.

Recovery times are never the same as people’s immune systems are so different. I had Rituximab as part of my R-EPOCH so was on it for over 96 hrs for 6 cycles so I was in hospital for 5 days. My immune system never made a good recovery between each cycle so just had to be carful but again my Rituximab along with the other chemos were a big hit on my body.

Most folks do ok once they get the first treatment done…. as always you should talk this through with your clinical teams especially your Specialist Cancer znurse if you have one ((hugs))

Hi Mike

Thank you for your comforting and encouraging comments. Yes I see the cancer nurse next week. I'm not working at the moment as I'm a children's nanny and can't take the risk with them. 

Thank you again!

Thank you so much. You have been a massive help. X

…… Specialist Cancer znurse… new roll for the NHS

Try and not stress this, talk it through and get your mind at ease ((hugs))