Posts - CLL Support | HealthUnlocked

CLL Support

22,516 members • 38,677 posts

All posts for May 2023

Need help understanding results

My bf is newly diagnosed and doesn’t have next doctor’s appt for a few days. He just got the results for the CLL FISH panel and I’m trying to get a preliminary...

My bf is newly diagnosed and doesn’t have next doctor’s appt for a few days. He ...

karmacrepe

•11 months ago

18 Replies

Diet options

OH has CLL, diagnosed 2014, treated RFC 2017. Nearly didn't make it after dreadful Covid in 2020, but is tenacious and determined and, thank heavens, he was...

OH has CLL, diagnosed 2014, treated RFC 2017. Nearly didn't make it after dread...

shoppingtrolley

•11 months ago

20 Replies

Why white blood counts can be high or low. Could a high count be blood cancer, in particular Chronic Lymphocytic Leukemia (CLL)?

If you are concerned about receiving a blood test result with a high white blood cell (WBC) count (leukocytosis), be reassured that the most common reason for...

If you are concerned about receiving a blood test result with a high white blood...

AussieNeil

Administrator•11 months ago

9 Replies

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Rare Case of Recurrent Cutaneous CLL in the Extremity: Long-Term Follow-Up and Literature Review, Written with the Assistance of ChatGPT

Note that this is a rare complication of CLL! The original case study was from 2001, so treatment was well before the availability targeted CLL therapies and...

Note that this is a rare complication of CLL! The original case study was from 2...

AussieNeil

Administrator•11 months ago

3 Replies

Travel insurance when in remission

Does anyone have experience of taking out travel insurance when their CLL has been declared as being in deep remission? I'm unsure as to whether or not I still...

Does anyone have experience of taking out travel insurance when their CLL has be...

Sandywhatsit

•11 months ago

27 Replies

Enlarged Lymph Nodes & Vaccines

As a matter of interest perhaps, after three terrible days following my 6th Phiser jab, and 120 Pulse rate. which has now reduced, as have the headaches , and...

As a matter of interest perhaps, after three terrible days following my 6th Phis...

Vindicatrix

•11 months ago

17 Replies

CLL is a lymphoid stem cell cancer so why are my myleloid stem cell products falling so much?

I am on Acal for 10 months after 8 years on W&W, 13q unmutated. Doing well with minimal side effects. ALC coming down from >200,000 to less than 30,000 after...

I am on Acal for 10 months after 8 years on W&W, 13q unmutated. Doing well with...

CaptRon1976

•11 months ago

6 Replies

7 Covid vaccinations

Hello, I just can’t get over it that some of you had 7 COVID vaccinations! I know only about the first 2 and then 2 (maybe 3) boosters = 5 vaccines. Where...

Hello, I just can’t get over it that some of you had 7 COVID vaccinations! I ...

Helma77

•11 months ago

12 Replies

Melatonin

Just wondering if anyone knows anything about melatonin and CLL. I’m reading The Rainbow Diet by Chris Woollams and he mentions it. I did a search on Google...

Just wondering if anyone knows anything about melatonin and CLL. I’m reading Th...

Thursday45

•11 months ago

23 Replies

constantly have infection

hello team, I have CLL for 10 years After I started Imbruvica for the last 4 years started to have UTI or oral infection. The last time during the last 2...

hello team, I have CLL for 10 years After I started Imbruvica for the last 4 ...

farber

•11 months ago

13 Replies

Colon cancer as secondary cancer

Hi I just got diagnosed with colon cancer last week and I am lucky I will have the operation to remove it on Tuesday - a very good Kaiser surgeon got me in...

Hi I just got diagnosed with colon cancer last week and I am lucky I will have ...

angelikab

•11 months ago

41 Replies

Thank you

A few months ago I posted a message for info, my wife at that time had been diagnosed with CCL like most people we were stunned and didn't know where to get...

A few months ago I posted a message for info, my wife at that time had been diag...

Roto

•11 months ago

5 Replies

Severe reaction to Phiser 6th jab.

Hi All I don't know who I was posting to on this subject, so I will put it out there for all to see, it may be helpful to some. On my 4th and 5th Phiser, I...

Hi All I don't know who I was posting to on this subject, so I will put it out t...

Vindicatrix

•11 months ago

24 Replies

Tests

Finally in a land( Aotearoa NZ) where referral for such tests are as rare as hen’s teeth I have had the chance to get what is maybe the full ‘Monty’ After 5...

Finally in a land( Aotearoa NZ) where referral for such tests are as rare as hen...

Kiwidi

•11 months ago

4 Replies

Hard Mass on my Spleen

My first post here .... can hardly believe I'm doing this. Firstly, a big thank you to the creators and members of this group who share. I'm sure your help...

My first post here .... can hardly believe I'm doing this. Firstly, a big tha...

Gooseman

•11 months ago

25 Replies

Fatigue and SLL

I posted this a question not too long ago and there were helpful responses but I can't find them. Brain fog I guess. I have SLL recently diagnosed, enlarged...

I posted this a question not too long ago and there were helpful responses but I...

TLSAtlanta

•11 months ago

12 Replies

Red face / flushing. Possible rosacea

Hi I am 200 plus days post stem cell transplant. Since then I get flushed very easily. I have suffered with this in the past and still have it now but maybe...

Hi I am 200 plus days post stem cell transplant. Since then I get flushed very e...

Kraskie1915

•11 months ago

20 Replies

Dr. John Seymour on IgHV Mutational Status

IgHV is one of the biomarkers used to predict prognosis and how an individual with CLL/SLL will respond to different treatment options. Watch our interview...

IgHV is one of the biomarkers used to predict prognosis and how an individual wi...

Edalv

•11 months ago

7 Replies

neutropenia back again

My husband encountered Neurtropenia right before his last O infusion. Protocol was one week off venetoclax, blood test, no improvement, GCIF injections which...

My husband encountered Neurtropenia right before his last O infusion. Protocol w...

lisakc1

•11 months ago

14 Replies

UK herbal remedy ingredient check by UCL School of Pharmacy: Many poor quality products, though those with the THR label fare better

Do herbal supplements contain what they say on the label?...

AussieNeil

Administrator•11 months ago

27 Replies

Paxlovid or not?

Hi, sorry for another covid post but I’d value your thoughts… My question: Anyone out there with CLL had covid recently and not used antivirals and...

Hi, sorry for another covid post but I’d value your thoughts… My question: An...

Courage_Love_Legacy

•11 months ago

13 Replies

covid

hi guys I’ve got covid I’m taking anti viral I’m very sore day two any advice

hi guys I’ve got covid I’m taking anti viral I’m very sore day two any advice ...

581959

•11 months ago

2 Replies

Is montelukast necessary

I am starting gazyva infusions in one week Doctor asked me to take this stuff Side affects sound scary Anyone have experience with this

I am starting gazyva infusions in one week Doctor asked me to take this stuff...

sept149

•11 months ago

10 Replies

ALCALABRUTINIB and high blood pressure.

Does anyone has experience with High blood pressure in the morning? I notified my oncologist he said that readings of 135- 58- 67 to 160-85-71 were not...

Does anyone has experience with High blood pressure in the morning? I notified m...

unairdefamille

•11 months ago

8 Replies

seville oranges - Marmalade

When on Ibrutinib we know that we should avoid seville oranges. I have had marmalade on toast for my breakfast for as long as I can remember. (Since being on...

When on Ibrutinib we know that we should avoid seville oranges. I have had marm...

RobertCLL

•11 months ago

8 Replies

Spirulina

I’m going to try the supplement Spiulina. I’ve read it helps the immune system, has antioxidants, and possibly has cancer fighting properties. I read it may...

I’m going to try the supplement Spiulina. I’ve read it helps the immune system,...

Rando21

•11 months ago

16 Replies

a success story ❤️

https://www.walesonline.co.uk/news/real-life/cancer-spread-over-stephens-body-26955077 Not sure if I am allowed to post this link here, but it was very...

https://www.walesonline.co.uk/news/real-life/cancer-spread-over-stephens-body-26...

Lellyandme

•11 months ago

26 Replies

Shingles help

The posts on shingles were very timely as I am in last stages of shingles. I developed shingles April 20th, 2023. I had a very mild case of shingles m......

The posts on shingles were very timely as I am in last stages of shingles. I de...

Big_Dee

•11 months ago

20 Replies

Thoughts on Chickenpox

I was with my daughter and grandson this morning and she mentioned Chickenpox was going around. A bit worrying I thought, so best take evasive action having...

I was with my daughter and grandson this morning and she mentioned Chickenpox wa...

Oleboyredw-uk

•1 year ago

29 Replies

Latest bloodwork

My past 3 cbc's have shown a rise in specific areas that seem to indicate that I'm no longer in remission. I'm hoping I can attach results as I have questions...

My past 3 cbc's have shown a rise in specific areas that seem to indicate that I...

rubberlegs68

•1 year ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2023

Need help understanding results

Diet options

Why white blood counts can be high or low. Could a high count be blood cancer, in particular Chronic Lymphocytic Leukemia (CLL)?

Rare Case of Recurrent Cutaneous CLL in the Extremity: Long-Term Follow-Up and Literature Review, Written with the Assistance of ChatGPT

Travel insurance when in remission

Enlarged Lymph Nodes & Vaccines

CLL is a lymphoid stem cell cancer so why are my myleloid stem cell products falling so much?

7 Covid vaccinations

Melatonin

constantly have infection

Colon cancer as secondary cancer

Thank you

Severe reaction to Phiser 6th jab.

Tests

Hard Mass on my Spleen

Fatigue and SLL

Red face / flushing. Possible rosacea

Dr. John Seymour on IgHV Mutational Status

neutropenia back again

UK herbal remedy ingredient check by UCL School of Pharmacy: Many poor quality products, though those with the THR label fare better

Paxlovid or not?

covid

Is montelukast necessary

ALCALABRUTINIB and high blood pressure.

seville oranges - Marmalade

Spirulina

a success story ❤️

Shingles help

Thoughts on Chickenpox

Latest bloodwork

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