Posts - CLL Support | HealthUnlocked

CLL Support

22,661 members • 38,891 posts

All posts for December 2023

Covid concerns

Recent elevated WBC counts led me to the hematologists office for more blood work and a bone marrow biopsy. Original dx was presumed to be marginal zone...

Recent elevated WBC counts led me to the hematologists office for more blood wor...

Springwatertide

•6 months ago

6 Replies

Sudden recent darkness under eyes

Hey, all, I think I know that a lot of people have dark area around their eyes just as part of their normal selves. But I have never had any rings under my...

Hey, all, I think I know that a lot of people have dark area around their eyes j...

Vlaminck

•6 months ago

18 Replies

More on MRD

To further the discussion on MRD, here is a commentary from a known and reliable source "Patient Power"-...

To further the discussion on MRD, here is a commentary from a known and reliable...

Smakwater

•6 months ago

5 Replies

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Shingrix

Hello All, I have been a member on here since 2016. I admit to not being the most vocal of members but I do read most days and have found this forum to be...

Hello All, I have been a member on here since 2016. I admit to not being the m...

Trimark

•6 months ago

19 Replies

Covid advice please

I finished treatment on 15th Nov this year😊. Since than been has been a struggle . I have had a urine infection which was treated with antibiotics....

I finished treatment on 15th Nov this year😊. Since than been has been a st...

Stavrou1

•6 months ago

26 Replies

Common Cold and CLL? What does Immune Compromised actually mean?

So when one gets a "common cold," and has CLL progressing but still in W&W, should one expect to get a worse cold than one would've before the CLL took hold?...

So when one gets a "common cold," and has CLL progressing but still in W&W, shou...

lynnsb6754

•6 months ago

33 Replies

Hair loss while taking Acalabrutinib

My hair is coming out in handfuls as I mentioned in a recent post. What used to be long to my waist, thick and shiny is now dry, dull and very brittle. This...

My hair is coming out in handfuls as I mentioned in a recent post. What used to ...

Vinweesel2023

•6 months ago

13 Replies

Ibrutinib +venetoclax

Can anyone please clarify which countries have approved and now fund the use of this combination as a fixed term first-line treatment for CLL? 🙏Is it FDA...

Can anyone please clarify which countries have approved and now fund the use of ...

Kiwidi

•6 months ago

15 Replies

CLL and age

I'm lorna and I'm 46. I've been told I am very young to have CLL. I wondered if anybody is around my age or was diagnosed at a similar age. I find it...

I'm lorna and I'm 46. I've been told I am very young to have CLL. I wondered if ...

Lornakatherine1977

•6 months ago

66 Replies

Update.

I had blood's taken for testing this morning. My macmillan nurse called this afternoon to say that Dr Sidra my haematologist has looked at the results and my...

I had blood's taken for testing this morning. My macmillan nurse called this aft...

Jacksc06

•6 months ago

26 Replies

ZANUBRUTINIB TREATMENT STARTS IN JANUARY

This is primarily an update on where I am on our broken road, as I've been posting since my diagnosis in March 2018. I'm also curious to receive input from...

This is primarily an update on where I am on our broken road, as I've been posti...

62Panhead

•6 months ago

11 Replies

New to the group. Should I worry concerning my latest blood results?

New to the group. First post even if I regularly read what is posted. Dx in March 2023. But CLL for at least 2 years. Unmutated, triso 12 and q (14,19). On...

New to the group. First post even if I regularly read what is posted. Dx in Mar...

povhgc

•6 months ago

7 Replies

Peripheral neuropathy

Hi to the CLL community , on cycle 8 of my V and O treatment and now on Venetoclax for the last 4 months. Have had the venetoclax reduced to 200mg for a few...

Hi to the CLL community , on cycle 8 of my V and O treatment and now on Venetoc...

puppy43

•6 months ago

15 Replies

Infections

Hello Hope your doing ok. I am struggling since finishing my treatment with V&O on 15th November this year . I have had a bad urine infection . Went after...

Hello Hope your doing ok. I am struggling since finishing my treatment with V...

Stavrou1

•6 months ago

8 Replies

massage

I went to a Spa at the weekend and intended to get a full body massage. The form had a box for cancer on it so I ticked CLL watch and wait. The staff would not...

I went to a Spa at the weekend and intended to get a full body massage. The form...

Hidden

•6 months ago

18 Replies

confused!!!

hi everyone hope you are all as well as you could be!!! I’m struggling big time now! I have a strange situation which I wonder if anyone else has? I became...

hi everyone hope you are all as well as you could be!!! I’m struggling big time...

Dragonfly766

•6 months ago

58 Replies

Combined Medication

Hi Everyone first post as a new member. I am currently on one tablet of ibrutinib per day for 3 months. My 3 month ends on 27th of December. I then combine...

Hi Everyone first post as a new member. I am currently on one tablet of ibrutini...

wolfe1963

•6 months ago

8 Replies

Now it begins

Hi All, I have been told by my Haematologist, that she is going to start my CLL treatment in January. She is talking about putting me on, 'Veneloclax' (Pill)...

Hi All, I have been told by my Haematologist, that she is going to start my CLL ...

Vindicatrix

•6 months ago

26 Replies

Transformation of Richter's Transformation Treatment to combination targeted therapy - tislelizumab +zanubrutinib (ASH 2023)

Richter's Transformation treatments are typically fixed term R-CHOP*, or modifications of that chemoimmunity therapy. So it's encouraging to hear that "In a...

Richter's Transformation treatments are typically fixed term R-CHOP*, or modific...

AussieNeil

Administrator•6 months ago

3 Replies

thanks!

thank you to all who replied about my 💩 issue. It seems resolved finally and my Covid tests are negative after 14 days. Your advice and concern has been very...

thank you to all who replied about my 💩 issue. It seems resolved finally and my...

Cottager1989

•6 months ago

Be the first to reply

AI and CLL

it hasn’t really been covered here yet, but AI and ML is beginning to influence medicine. With all the big techs chasing AI development, the ability for AI to...

it hasn’t really been covered here yet, but AI and ML is beginning to influence ...

MovingForward4423

•6 months ago

10 Replies

Joint/Muscle pain

Has anyone who is in Acalabrutinib suffered with muscle pain after being on it it for some time? I have terrible pain in upper left leg for over 2 months....

Has anyone who is in Acalabrutinib suffered with muscle pain after being on it i...

Westie11-

•6 months ago

45 Replies

Covid question

I’ve avoided Covid up until now. My partner and I picked it up in Cuba. Started with what we thought was food poisoning, the dreaded diarrhea. It’s now been 14...

I’ve avoided Covid up until now. My partner and I picked it up in Cuba. Started ...

Cottager1989

•6 months ago

21 Replies

MRD - What's the Buzz?

For those who are interested in understanding MRD, the link below connects to some insight on MRD and testing from the NIH Library of Medicine. The...

For those who are interested in understanding MRD, the link below connects to so...

Smakwater

•6 months ago

24 Replies

Cll treatment

Hi everyone! I would like to introduce myself first. I am 56 now and I am CLL patient after 5 years being on watch period. My treatment in Obinutuzumab and...

Hi everyone! I would like to introduce myself first. I am 56 now and I am CLL ...

Krys890

•6 months ago

19 Replies

New To This

I recently found out from a routine blood test that I needed to see a hematologist. After she reviewed my blood work I was told I have CLL. Of course this is...

I recently found out from a routine blood test that I needed to see a hematologi...

62Panhead

•6 months ago

14 Replies

'Headspin'

I'm sure we have all had a 'Spinning Head' at some time or other, especially since being diagnosed with CLL. Many of us soon realise that CLL is soon joined...

I'm sure we have all had a 'Spinning Head' at some time or other, especially sin...

Vindicatrix

•6 months ago

11 Replies

How you can help make ibrutinib plus venetoclax fixed duration therapy a reality for Australians with previously untreated CLL

In Australia, no new medicine can be listed on the Pharmaceutical Benefits Scheme (PBS) unless it has first been recommended by the Pharmaceutical Benefits...

In Australia, no new medicine can be listed on the Pharmaceutical Benefits Schem...

CLLerinOz

Administrator•6 months ago

6 Replies

Nuvaxovid vaccine in patients with CLL

Hi Have any of you recently had the Nuvaxovid vaccine? I wonder how people with CLL react to this vaccine. thanks for the answer.

Hi Have any of you recently had the Nuvaxovid vaccine? I wonder how people with ...

BART4

•6 months ago

14 Replies

MRD testing

I was in a trial and done w treatment . Every 3 mths now I get the bloodwork and th MRD blood work gets sent out . Do those of you in similar situation call...

I was in a trial and done w treatment . Every 3 mths now I get the bloodwork and...

Gardengirl44

•6 months ago

10 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for December 2023

Covid concerns

Sudden recent darkness under eyes

More on MRD

Shingrix

Covid advice please

Common Cold and CLL? What does Immune Compromised actually mean?

Hair loss while taking Acalabrutinib

Ibrutinib +venetoclax

CLL and age

Update.

ZANUBRUTINIB TREATMENT STARTS IN JANUARY

New to the group. Should I worry concerning my latest blood results?

Peripheral neuropathy

Infections

massage

confused!!!

Combined Medication

Now it begins

Transformation of Richter's Transformation Treatment to combination targeted therapy - tislelizumab +zanubrutinib (ASH 2023)

thanks!

AI and CLL

Joint/Muscle pain

Covid question

MRD - What's the Buzz?

Cll treatment

New To This

'Headspin'

How you can help make ibrutinib plus venetoclax fixed duration therapy a reality for Australians with previously untreated CLL

Nuvaxovid vaccine in patients with CLL

MRD testing

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