Posts - CLL Support | HealthUnlocked

CLL Support

23,952 members•40,798 posts

All posts for November 2024

Eventful First Week on Ibrutinib

After numerous false starts the Consultant started me on Ibrutinib a week ago. My treatmentincluded several other protective medications. All was well for the...

After numerous false starts the Consultant started me on Ibrutinib a week ago. M...

Coldplaybest

•4 months ago

9 Replies

1st bloods after treatment .

I am seeing consultant next week and having bloods taken after finishing 15 months on Ibrutinib and venetoclax. Should I be asking for any other blood tests...

I am seeing consultant next week and having bloods taken after finishing 15 mon...

Guinness4822

•4 months ago

16 Replies

CLL in the Central Nervous System

I'm a 73 y/o woman, diagnosed with CLL in December of 2023, without any symptoms and was told to W & W. In the summer of 2024, I experienced repeated episodes...

I'm a 73 y/o woman, diagnosed with CLL in December of 2023, without any symptoms...

ncosto

•4 months ago

16 Replies

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Anyone get rashes

Hello, I can use your advice. I was recently exposed to walking pneumonia and two days later had a rapid spreading rash that I’ve had for almost 3 weeks now....

Hello, I can use your advice. I was recently exposed to walking pneumonia and tw...

meganbo

•4 months ago

13 Replies

What a crazy disease

Hi my friends. Just a little update on my progress. After my ALC was 71 in October and the haemo was telling me I would be treated for the first time after...

Hi my friends. Just a little update on my progress. After my ALC was 71 in Octo...

Guffy

•4 months ago

11 Replies

low hemoglobin

hi, diagnosed with CLL for a year now, my haemoglobin now drops to low levels due to bone marrow issue, down to 4 at times, have bone marrow biopsy next...

hi, diagnosed with CLL for a year now, my haemoglobin now drops to low levels d...

Jim-Boy

•4 months ago

18 Replies

Pulsatile tinnitus and hearing loss

I had a work up for onset of pulsation tinnitus and later a sudden hearing loss in one ear by Neurologist ,ENT ,Dentist and they found no reason for tinnitus...

I had a work up for onset of pulsation tinnitus and later a sudden hearing loss ...

Walkinginnature

•4 months ago

32 Replies

Dennis K

Hello, I’m a 58 yo male that was diagnosed with CLL in 2019. currently stage 0. W&W under the supervision of my oncologist. Searching for natural ways to keep...

Hello, I’m a 58 yo male that was diagnosed with CLL in 2019. currently stage 0....

Clydelucy

•4 months ago

20 Replies

Acronyms and Initialisms

Acronyms and initialisms are shortened forms. They replace full names and special terms in text. Use them only if people recognise and understand them. Please...

Acronyms and initialisms are shortened forms. They replace full names and speci...

johnwhitnall

•4 months ago

15 Replies

Advice for Traveling to Guatemala & Belize

Recently diagnosed with CLL and on Brukinsa now. This June I would like to take a trip with my adult son and nephews to Guatemala and Belize. We're coming...

Recently diagnosed with CLL and on Brukinsa now. This June I would like to take...

MarquisMark

•4 months ago

2 Replies

Headaches and CLL

Has anyone anything to offer with regard to constant headaches. I’ve had this for four weeks. Been put on 40mgs Predisolone steroid as it might be GCA but...

Has anyone anything to offer with regard to constant headaches. I’ve had this ...

keeptalking

•4 months ago

42 Replies

Introduction

Hi Everyone,I'm newly diagnosed with cll as of 2021. l m on watch and wait. Was hoping to connect with others and gain some knowledge about tips to staying...

Hi Everyone,I'm newly diagnosed with cll as of 2021. l m on watch and wait. Was...

Butterchick

•4 months ago

18 Replies

Up date

Finished the 6 treatment last week for CLL/ AIHA and had the PICC line took out today after the blood tested done . I don't see the doctor until the new...

Finished the 6 treatment last week for CLL/ AIHA and had the PICC line took out...

Ignis-miles

•4 months ago

5 Replies

omeprazole

Many thanks to all for sharing your experiences and general advice . Great group of people so feeling less sorry for myself after reading all the comments....

Many thanks to all for sharing your experiences and general advice . Great group...

Tonnross

•4 months ago

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night sweats ?

I’m at month 7 of O&V and have been pretty good so far. Blood was all in the normal range two weeks ago. I tested positive for Covid next day (two weeks ago)...

I’m at month 7 of O&V and have been pretty good so far. Blood was all in the nor...

Swanseacity

•4 months ago

8 Replies

Thinking about cancer - or not

I joined this wonderful community a couple of years ago when my blood results indicated something was amiss and I suspected CLL. My CLL was only confirmed a...

I joined this wonderful community a couple of years ago when my blood results in...

Mokoia

•4 months ago

11 Replies

opemrazole gastro capsules

having cll and issues I have been on omeprazole for years due to the amount of meds Iam on. However recently been told that these are not for long term use....

having cll and issues I have been on omeprazole for years due to the amount of m...

Tonnross

•4 months ago

43 Replies

nocturia

hi everyone I’m wondering who in this crowd has had success dealing with nocturia? I’m probably only asking males? because in my case it’s prostrate related...

hi everyone I’m wondering who in this crowd has had success dealing with noctu...

GettinThruIt

•4 months ago

9 Replies

Private healthcare insurance in England for patient with CLL

I currently have private BUPA healthcare insurance provided by my employers. My CLL was diagnosed a few months ago, whilst I was insured by this policy. I'm...

I currently have private BUPA healthcare insurance provided by my employers. My ...

Fred_Green

•4 months ago

19 Replies

MAJIC Trial Update

As some may recall, I finished my 14th cycle of the MAJIC trial A&V arm in January of 2024. At that time, my CT scans were clear, my bone marrow showed no...

As some may recall, I finished my 14th cycle of the MAJIC trial A&V arm in Janua...

Horatio2

•4 months ago

10 Replies

Bloodwork Question

Posting my results below. My Lymphocytes have been creeping up, last test was 12.7 in April. At the time of having blood drawn, I had been fighting off a...

Posting my results below. My Lymphocytes have been creeping up, last test was 1...

BC-CLLguy

•4 months ago

4 Replies

Good News at Last

I've got a long and varied CLL history. Long story made short for those not familiar, I was diagnosed in 2013 in my own lab when I was working as a NHS...

I've got a long and varied CLL history. Long story made short for those not fam...

Jm954

Administrator•4 months ago

123 Replies

Undetectable after 6 months

I received six months of obinutuzumab And 400 mg Venetoclax. My oncologist did a bone marrow biopsy and a CT scan. The results of the CT scan were all normal...

I received six months of obinutuzumab And 400 mg Venetoclax. My oncologist did...

Golflover1954

•4 months ago

17 Replies

Gilbert's syndrome

Hello again all you lovely people....I posted here a few weeks ago re: my hubby Baz who has CLL and is on acalabrutinib for 2 years and feeling well. I joined...

Hello again all you lovely people....I posted here a few weeks ago re: my hubby ...

Chroniclymphs

•4 months ago

9 Replies

Sudden allergy to dogs

Hi all, I'm a 73-year-old man living in Arizona and I have had CLL for 10 years and still w/w. I have always had pet dogs. In the last 6 months, somehow I've...

Hi all, I'm a 73-year-old man living in Arizona and I have had CLL for 10 years ...

SunnyDan

•4 months ago

29 Replies

Neutrophil count

My husband has cll (not on treatment) his last appointment the consultant said his neutrophil count had gone up ( it is 19) he mentioned cml and that he could...

My husband has cll (not on treatment) his last appointment the consultant said ...

MollyC22

•4 months ago

5 Replies

Day 5 Zanubrutinib

Am a little concerned with one of the side effects increased bleeding. I have chronic venous insufficiency in my left leg and despite wearing my compression...

Am a little concerned with one of the side effects increased bleeding. I have c...

FreoSue

•4 months ago

9 Replies

Initial Treatment - obinutuzumab And Venetoclax

hi, I’m starting CLL treatment this week due to very low haemaglobin count. This will start with obinutuzumab with venetoclax to be added in 3 weeks. Are...

hi, I’m starting CLL treatment this week due to very low haemaglobin count. Thi...

Theplodder

•4 months ago

12 Replies

Blood test Result

My Platelet count on my three monthly blood test has gone from 201 to 160 do they increase again or keep going down.? WBC is now 57.8 and Lymphocytes 53.5...

My Platelet count on my three monthly blood test has gone from 201 to 160 do th...

Kiwi77

•4 months ago

9 Replies

fatigue

hi friends. I am doing well and into week 7 of the O plus V treatment. I have never felt fatigue like this before. I am a very active person and this has...

hi friends. I am doing well and into week 7 of the O plus V treatment. I have ne...

DogmomLM

•4 months ago

17 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for November 2024

Eventful First Week on Ibrutinib

1st bloods after treatment .

CLL in the Central Nervous System

Anyone get rashes

What a crazy disease

low hemoglobin

Pulsatile tinnitus and hearing loss

Dennis K

Acronyms and Initialisms

Advice for Traveling to Guatemala & Belize

Headaches and CLL

Introduction

Up date

omeprazole

night sweats ?

Thinking about cancer - or not

opemrazole gastro capsules

nocturia

Private healthcare insurance in England for patient with CLL

MAJIC Trial Update

Bloodwork Question

Good News at Last

Undetectable after 6 months

Gilbert's syndrome

Sudden allergy to dogs

Neutrophil count

Day 5 Zanubrutinib

Initial Treatment - obinutuzumab And Venetoclax

Blood test Result

fatigue

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