Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for August 2023

Full Blood Counts#

Hi all, I notice that on my recent Bloods taken at my local haematology departments, has a heading, entitled: Sample Comments. Underneath the heading are...

Hi all, I notice that on my recent Bloods taken at my local haematology departm...

Vindicatrix

•9 months ago

4 Replies

P.I.P advice.

Due to work becoming more tiring and being back on chemo. I am considering applying for pip so I can reduce my hours. I have applied twice in the past but was...

Due to work becoming more tiring and being back on chemo. I am considering apply...

Jacksc06

•9 months ago

39 Replies

Goodmorning everyone

my mother was diagnosed with cll in 2017 and was on watch and wait till march 2022 when she did colonoscopy and the stomach one (don’t know what it’s called )...

my mother was diagnosed with cll in 2017 and was on watch and wait till march 20...

Eirinik

•9 months ago

8 Replies

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Ventoclax&Obinutuzumab or Zanibrutinib&Acalabrutinib

51 years old have been on watch and wait three years. Only reasons to start treatment now seem to be hemoglobin around 10 and after bone marrow recently done I...

51 years old have been on watch and wait three years. Only reasons to start trea...

Bryanb

•9 months ago

8 Replies

Pirtobrutinib approved by my insurance company

On my last visit to Upenn, my blood counts were significantly higher and after 4 years on Calquence, it has stopped working. My specialist was hoping I’d make...

On my last visit to Upenn, my blood counts were significantly higher and after 4...

ReneeSusan

•9 months ago

9 Replies

FLU VACCINE

I am in the UK on Venetoclax and have just spent 5 days in hospital with COVID. Is it safe to have the flu vaccine and is it hit or miss whether the vaccine...

I am in the UK on Venetoclax and have just spent 5 days in hospital with COVID. ...

Marisa

•9 months ago

27 Replies

Obinutuzumab

Just wondered of anyone has had obinituzumab iv with venetoclax as this is a treatment option I have been offered.

Just wondered of anyone has had obinituzumab iv with venetoclax as this is a tr...

Guinness4822

•9 months ago

30 Replies

CLL disease burden and neupogen

I am on V & O trial 20-044 and reading about CLL trial CLL14. Can anyone outline or define what is “high disease burden?” So far little side effects, just...

I am on V & O trial 20-044 and reading about CLL trial CLL14. Can anyone outline...

SurfSurf

•9 months ago

7 Replies

Out of Remission

Well, I got some not so good news today. I had my CLL check today and I'm out of remission. My WBC is now 14K. My platelets are 152. My doctor wants to...

Well, I got some not so good news today. I had my CLL check today and I'm out o...

MyCLLJourney

•9 months ago

24 Replies

Advice on best treatment

I have had CLL since 2013 watch and wait. Recently hemoglobin levels dropped and a bit anemic so been advised 3 types of treatment. However left to make own...

I have had CLL since 2013 watch and wait. Recently hemoglobin levels dropped and...

Guinness4822

•9 months ago

8 Replies

skin issue

I have had CLL for about four years. I am currently on active surveillance and treatment naive. I had a spinal fusion on July 17 for L4-5 due to...

I have had CLL for about four years. I am currently on active surveillance and t...

BlueJk

•9 months ago

1 Reply

Turkey tail mushroom while not taking TKIs

I am on a one year break from alcalabrutinib and I was wondering if taking any immune supportive supplements like turkey tale encourage the growth of immature...

I am on a one year break from alcalabrutinib and I was wondering if taking any i...

denmanjemima

•9 months ago

11 Replies

Home again.

Got home at around 20:30 after first cycle of Rituximab. Had a poor night's sleep on the ward as usual, so hoping to sleep well tonight. No major dramas during...

Got home at around 20:30 after first cycle of Rituximab. Had a poor night's slee...

Jacksc06

•9 months ago

29 Replies

How long to quarantine after Covid?

Hello, My parent has CLL and tested positive for COVID for 12 days and has now been testing negative for 48 hours. He hasn’t had any symptoms for a week,...

Hello, My parent has CLL and tested positive for COVID for 12 days and has now b...

CLLdaughters

•9 months ago

6 Replies

Starting therapy 5 yrs post CAR-T with another immunotherapy trial, now epcoritamab

Making my exercise "rounds" at the hospital It was a nice long run and far exceeded the average duration of response to CAR-T in CLL, but as we all...

Making my exercise "rounds" at the hospital It was a nice long run and far exce...

bkoffman

CLL CURE Hero•9 months ago

63 Replies

What’s next?

I was diagnosed, in December of 2018, with CLL and placed on W&W. Less than a year later I started FCR. After completing FCR my blood counts rose steadily...

I was diagnosed, in December of 2018, with CLL and placed on W&W. Less than a ye...

Pokerguy

•9 months ago

1 Reply

covid vaccine fall 2023

Has a date for getting the new covid vac been announced in the US for Fall 2023? i see conflicting info. thanks

Has a date for getting the new covid vac been announced in the US for Fall 2023?...

ElMaga

•9 months ago

3 Replies

Christmas is upon us!!

Just had an email from Boots (I get them because I have an advantage card). Wait for it .... Advent calendars on special offer, buy early!! In the words of...

Just had an email from Boots (I get them because I have an advantage card). Wait...

kitchengardener2

•9 months ago

32 Replies

Stomach upset after treatment

There have been many posts about heartburn and indigestion when taking Venetoclax and I have perused those. But I am UMRD- after O+V and last week suddenly...

There have been many posts about heartburn and indigestion when taking Venetocla...

Thundercat2

•9 months ago

3 Replies

ITP with CLL

Anyone else develop ITP with CLL?. My CLL doesn’t really need treating yet either. 🤷🏻‍♀️

Anyone else develop ITP with CLL?. My CLL doesn’t really need treating yet eithe...

GeriGi

•9 months ago

15 Replies

Is MBL the same as CLL stage 0?

hi. I recently got diagnosed with MBL and I’m reading a lot about CLL stage zero on this board. I’m a little confused with the terminology. I’m trying to...

hi. I recently got diagnosed with MBL and I’m reading a lot about CLL stage zer...

Jazzandblues

•9 months ago

25 Replies

Shingles

My husband has had really bad shingles for two weeks now, the rash is clearing up however he's still in terrible pain, he was given Acyclovir and he's taking...

My husband has had really bad shingles for two weeks now, the rash is clearing u...

Alfiebhoy

•9 months ago

16 Replies

Depression and CLL

Hi, my husband was diagnosed with CLL three weeks ago. He is on watch and wait. He is very focused on his nutrition and exercise at the moment but is getting...

Hi, my husband was diagnosed with CLL three weeks ago. He is on watch and wait. ...

JLD1969

•9 months ago

19 Replies

Schwannoma or Lymphoma

Hi All, I am still waiting for the Biopsy of the neck, and CT neck Scans, as well as a full body scan.. The dates are 4th September, for the neck scan, and...

Hi All, I am still waiting for the Biopsy of the neck, and CT neck Scans, as wel...

Vindicatrix

•9 months ago

14 Replies

weighing treatment options

Hello group - So grateful for all the posts and stories that have helped along this journey so far. We’ve never posted but have learned much from the wealth...

Hello group - So grateful for all the posts and stories that have helped along t...

TheResearchWife

•9 months ago

10 Replies

High mpv and differential platelet count.

Hello every oneHad quarterly review meeting with my haematologist. Blood work seems to be quite satisfactory but for high MVP at 14 fl, and differential...

Hello every oneHad quarterly review meeting with my haematologist. Blood work se...

GargR

•9 months ago

2 Replies

4 weeks of Rituximab

I just finished 4 weeks of Rituximab 750ml once a week. Diagnosed cll 2019 at 42 developed Pure red cell aplasia at the start of this year. Only side affects...

I just finished 4 weeks of Rituximab 750ml once a week. Diagnosed cll 2019 at 4...

Jimmy_9

•9 months ago

14 Replies

Venetoclax reactions

I am currently under treatment for my sll with obinutuzumab and Venetoclax.The O infusion is going quite well, but I can't tolerate the Venetoclax even at the...

I am currently under treatment for my sll with obinutuzumab and Venetoclax.The ...

Lisbon2022

•9 months ago

19 Replies

Update.

Hi all. Been a bit quiet recently as I have had some issues. I had what I thought was heartburn a couple of weeks ago along with shortness of breath. After...

Hi all. Been a bit quiet recently as I have had some issues. I had what I though...

Jacksc06

•9 months ago

63 Replies

A guide to Fall vaccine options - USA by Your Local Epidemiologist

A guide to Fall vaccine options - by KATELYN JETELINA AND CAITLIN RIVERS AUG 17...

A guide to Fall vaccine options - by KATELYN JETELINA AND CAITLIN RIVERS AUG 17....

lankisterguy

Volunteer•9 months ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2023

Full Blood Counts#

P.I.P advice.

Goodmorning everyone

Ventoclax&Obinutuzumab or Zanibrutinib&Acalabrutinib

Pirtobrutinib approved by my insurance company

FLU VACCINE

Obinutuzumab

CLL disease burden and neupogen

Out of Remission

Advice on best treatment

skin issue

Turkey tail mushroom while not taking TKIs

Home again.

How long to quarantine after Covid?

Starting therapy 5 yrs post CAR-T with another immunotherapy trial, now epcoritamab

What’s next?

covid vaccine fall 2023

Christmas is upon us!!

Stomach upset after treatment

ITP with CLL

Is MBL the same as CLL stage 0?

Shingles

Depression and CLL

Schwannoma or Lymphoma

weighing treatment options

High mpv and differential platelet count.

4 weeks of Rituximab

Venetoclax reactions

Update.

A guide to Fall vaccine options - USA by Your Local Epidemiologist

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