Update.: Had my first of four infusions of... - CLL Support

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Update.

Jacksc06 profile image
30 Replies

Had my first of four infusions of Rituxin yesterday. Feeling weary, didnt sleep well but ok. Will update as treatment progresses. Love and strength to all.

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Jacksc06 profile image
Jacksc06
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30 Replies
terryI_uk profile image
terryI_uk

Good luck going forwards jacks, God bless, Terry

Jacksc06 profile image
Jacksc06 in reply toterryI_uk

Thanks Terry, hope you are well.

terryI_uk profile image
terryI_uk in reply toJacksc06

Had a hard time lately, went for a week away with family to the Lake District and spent the first two days in bed then to hospital. I've got acute cholecystitis (gallbladder inflammation) and an abscess on my liver. After seeing the consultant in Furness hospital he suggested I make my way back to Kent so I could be treated at my local hospital and my wife wouldn't be isolated with nowhere to stay. Spent a further fortnight in hospital on IV antibiotics and sent home with a PICC and daily visits from nurse. After a couple of days they said my infection count had improved and I could go onto oral antibiotics. Hoping when they come today then PICC can be removed. I've got a follow up scan beginning of August and a consultant visit a week after to discuss gallbladder removal. Sorry for the long post, had to cancel a cruise we were booked to sail on Monday 22/07. Hey ho

Jacksc06 profile image
Jacksc06 in reply toterryI_uk

It sounds like you're having a tough time. Wishing you well going forward.

CycleWonder profile image
CycleWonder in reply toterryI_uk

Terry - When you meet with the surgeon about the gallbladder removal, you might consider discussing CLL and the impact that might have on where to put the bile duct. I may need to have mine moved farther down into the small intestines because as my CLL progressed, the swollen lymph glands ended up pushing too much bile into my stomach. All this time I thought I had acid reflux - it was bile reflux!

terryI_uk profile image
terryI_uk in reply toCycleWonder

Thanks, I already suffer with reflux which is treated with esomeprazole. I'll mention it at my upcoming appointment

whitewsu profile image
whitewsu in reply toterryI_uk

Wow! I hope you get well soon!

Walkingtall62 profile image
Walkingtall62

well done Jack for getting through it. All the best for the next ones. God bless

Jacksc06 profile image
Jacksc06 in reply toWalkingtall62

Thank you. Hope you are OK.

Walkingtall62 profile image
Walkingtall62

Yes thanks. ‘Hobbling’ along.

Name-1 profile image
Name-1

🍀🍀🍀.

Name-1 profile image
Name-1

🍀🍀🍀

Jacksc06 profile image
Jacksc06 in reply toName-1

Thank you Olga. Hope you're well.

Spark_Plug profile image
Spark_Plug

Sorry you're in this rough spot Jacksc06, hoping you get some relief soon.

Jacksc06 profile image
Jacksc06 in reply toSpark_Plug

Thank you. Hope you're doing well.

Ghounds profile image
Ghounds

Hope you're feeling better very soon.

Jacksc06 profile image
Jacksc06 in reply toGhounds

Thank you. Hope all well with you.

CycleWonder profile image
CycleWonder

Four in one day! I didn’t realize they gave so many in one day.

Jacksc06 profile image
Jacksc06 in reply toCycleWonder

It's one infusion a week for four weeks.

CycleWonder profile image
CycleWonder in reply toJacksc06

I obviously misread your post!

whitewsu profile image
whitewsu

Wishing you well...get better soon!

Jacksc06 profile image
Jacksc06 in reply towhitewsu

Many thanks. Hope you are well.

whitewsu profile image
whitewsu in reply toJacksc06

I'm well. Just diagnosed with CLL in April, but no symptoms so far.

emg112253 profile image
emg112253

I hope you feel better. I had a good experience with Rituxan, It has been a year since I had my four infusions and my Hemoglobin is higher then it has ever been. I wish you well for improving your health conditions. EM-G

Jacksc06 profile image
Jacksc06 in reply toemg112253

Thank you.

Big_Dee profile image
Big_Dee

Hello Jacksc06

Rituxan cured my psoriatic arthritis for couple of years and is also used for rheumatoid arthritis. May not help you but nice to know. Blessings.

Jacksc06 profile image
Jacksc06 in reply toBig_Dee

Thanks, good to know.

Veggiesaredelish profile image
Veggiesaredelish

I had 4 rituxan infusions last summer. I was astounded that all my bloodwork returned to normal numbers. I was fatigued during the whole treatment but not severely. My bloodwork is still good, % lymphocytes slowly creeping up, but WBC is smack dab in the middle of normal range. I don't know if rituxan caused my immunoglobulins to drop but I am getting a monthly infusion for that . I think I read that it could make them drop permanently so this could be a lifetime thing. I'm grateful the medicine worked and I've been feeling really good. I hope you get great results too.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toVeggiesaredelish

Thanks for your encouraging feedback to Jacksc06 after your Rituxan/rituximab infusions.

With respect to your;

1) mention of your % lymphocytes, please monitor your absolute lymphocyte and neutrophil counts to assess changes in the likely amount of CLL in your blood and your neutrophil protection against infection respectively. Only use percentages to calculate absolute results (WBC x % lymphs = absolute lymphs etc), nothing else, as they are very misleading when we have CLL. See: healthunlocked.com/cllsuppo...

2) immunoglobulin count recovery, you should be having regular checks of your IgA, IgG and IgM to ensure that you are being provided with the appropriate amount of IgG replacement. It typically takes up to a year or so for your bone marrow to recommence making healthy B cells after your last rituximab infusion. While their reappearance can be directly detected by an immunophenotype blood test, you should also see an improvement in your IgM and then IgA and maybe your IgG when you are again producing healthy B cells.

Neil

Veggiesaredelish profile image
Veggiesaredelish in reply toAussieNeil

Thanks AussieNeil for the great info. Absolute neutrophils and lymphocytes in normal range. I've had two immunoglobulin infusions and the levels are already much improved, another tomorrow. They do bloodwork everytime I go in so they are monitoring. If I achieve normal levels, what's the usual protocol? Stop infusions for awhile, go every other month or stay the course? I will see my oncologist in August but I want to have some info now, lol.

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