Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for September 2023

Medications & PBS

G'day friends! A quick question for the Aussies. Now, I'm getting closer to treatment, though hopefully it's still far away. But now I'm thinkin' about it...

G'day friends! A quick question for the Aussies. Now, I'm getting closer to trea...

Guffy

•8 months ago

2 Replies

moving on to next treatment-considering Nurex

I have had CLL for 25 yrs with not the greatest genetics/markers TP 53, 13q unmutated. Have had multiple treatments FCR,Bent&R,Ibrutinib and most recently clin...

I have had CLL for 25 yrs with not the greatest genetics/markers TP 53, 13q unmu...

Osprey69

•8 months ago

5 Replies

Default to locked to community?

Might administrators consider making posts default to locked to community with option to unlock rather than the other way around?

Might administrators consider making posts default to locked to community with o...

Vlaminck

•8 months ago

13 Replies

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CLL - Treatment timeline

I was diagnosed earlier this year (45 M). The doctor tells me I will need treatment at some point in my life... I'm in watch & wait (check back every three...

I was diagnosed earlier this year (45 M). The doctor tells me I will need trea...

joneill77

•8 months ago

17 Replies

treatment progression

has anyone else been on ibrutinib and Ventoclax and can tell me what to expect

has anyone else been on ibrutinib and Ventoclax and can tell me what to expect ...

Givemestrength23

•8 months ago

6 Replies

Didn’t get daily newsfeed today

I didn’t get daily newsfeed today - Had gotten it regularly until this morning - Think I may have inadvertently erased yesterdays newsfeed - and wonder if I...

I didn’t get daily newsfeed today - Had gotten it regularly until this morning -...

1ofakind

•8 months ago

15 Replies

Update.

I have received a letter from my haematologist. It states that I have mild anemia which I knew it also says that there is significant Haemolysis and increase...

I have received a letter from my haematologist. It states that I have mild anemi...

Jacksc06

•8 months ago

9 Replies

does it matter which RSV shot I get?

My hematologist/oncologist (affiliated with MDAnderson) said I should get RSV shot, but he mentioned he needed to know which one I would be receiving but...

My hematologist/oncologist (affiliated with MDAnderson) said I should get RSV sh...

IaBoy62

•8 months ago

10 Replies

Lets have some good news. V+O halfway CRu.

Complete remission / unconfirmed. BMB will be 6 cycles away. Spleen just shuffled in, quite literally. The "frankenfurter" 14cm x 1cm lymph node has gone.

Complete remission / unconfirmed. BMB will be 6 cycles away. Spleen just shuffle...

Skyshark

•8 months ago

7 Replies

mild struggles

hi. It’s been seven years since I was on this site. Diagnosed 2007. FCR. Then again in 2012. Various treatments. 2014 ibrutinib. 2016 Venetoclax and...

hi. It’s been seven years since I was on this site. Diagnosed 2007. FCR. The...

Corin850

•8 months ago

2 Replies

Richter’s Transformation

A reminder to everyone going through the treatment process. Currently, Richter's cancer is not considered an incurable cancer or one with a poor prognosis. It...

A reminder to everyone going through the treatment process. Currently, Richter's...

Priss69

•8 months ago

19 Replies

TP53 testing

Hi there, I have just started treatment with V and O. Went to a CLL specialist before treatment began and he asked if I had TP53 sequencing/dissected...

Hi there, I have just started treatment with V and O. Went to a CLL specialist ...

Mcc28

•8 months ago

10 Replies

Does Untreated Asymptomatic CLL Carry Risks? …early treatment does not yet improve survival of certain patients, from 2 year study results.

Does Untreated Asymptomatic CLL Carry Risks? from Patient Empowerment Network on Vimeo....

Does Untreated Asymptomatic CLL Carry Risks? from Patient Empowerment Network on...

lankisterguy

Volunteer•8 months ago

14 Replies

Paxlovid and Lagevrio Benefit COVID Outpatients in Omicron Era September 19, 2023

The American College of Physicians has issued an updated version of its living, rapid practice point guideline on the best treatment options for outpatients...

The American College of Physicians has issued an updated version of its living, ...

lankisterguy

Volunteer•8 months ago

2 Replies

Covid-19 jab - book now or wait

In the UK, the Government is rolling out its autumn Covid-19 vaccination programme and encouraging those eligible to book their appointment as soon as...

In the UK, the Government is rolling out its autumn Covid-19 vaccination program...

Beatirce

•8 months ago

31 Replies

Nature

Still waiting for the fall colors to come out, I thought I'd post this encounter with a Moose. I Only darrd to get so close to lock myself in to charged 😬

Still waiting for the fall colors to come out, I thought I'd post this encounter...

skipro

•8 months ago

37 Replies

Newly diagnosed with cll

I'm 36 and just recently been diagnosed with cll. I have read info on the condition so have a positive outlook knowing people can have it for years and not...

I'm 36 and just recently been diagnosed with cll. I have read info on the condit...

Mpupkis

•8 months ago

12 Replies

Hemoglobin level

Dear all, I am from Holland. My mum has CLL for 4 years now. I've read al lot of articles here and I also posted something. Really nice people on this...

Dear all, I am from Holland. My mum has CLL for 4 years now. I've read al lo...

Mvh0406

•8 months ago

16 Replies

Stem cell

Hi everyone, I am a Cll’er on w&w since December 2016 and my wbc is at 115. My oncologist is saying that my w&w may be at its end within 2 years. So I want to...

Hi everyone, I am a Cll’er on w&w since December 2016 and my wbc is at 115. My ...

Cgobies

•8 months ago

23 Replies

Weight gain

I knew that I was putting weight on and my consultant always seems happy about that. I am being treated with Acalabrutinib which thankfully has done its job....

I knew that I was putting weight on and my consultant always seems happy about t...

kitchengardener2

•8 months ago

33 Replies

Moving. CLL Specialists on the west coast US, CA, OR, WA?

I live at high altitude 9500 feet, and have developed other medical issues that require me to move to lower elevation. Don't know yet if I can to move down...

I live at high altitude 9500 feet, and have developed other medical issues tha...

Hidden

•8 months ago

13 Replies

Traditional chemo

has anyone been offered traditional chemo for treatment? My husband will be starting treatment soon. He’s been going to an oncologist in Tennessee. When we...

has anyone been offered traditional chemo for treatment? My husband will be sta...

Jill70

•8 months ago

28 Replies

Rituximab- my experience.

Rituximab is the mainstay of my treatment for Waldenstroms.1st treatment was Rutuximab on its own; 1 infusion per week for 4:weeks. I had mild headache during...

Rituximab is the mainstay of my treatment for Waldenstroms.1st treatment was Rut...

Hidden

•8 months ago

4 Replies

Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective

The following is intended for medical professionals and uses moderate Med-Speak - you may need to register and download the app to use it as intended. -Len...

The following is intended for medical professionals and uses moderate Med-Spea...

lankisterguy

Volunteer•8 months ago

1 Reply

Calquence/Acalbrutinib and Fatigue

I experience increased fatigue daily four hours after taking my first pill at 6:00 am. I have to take a nap for at least 1/2 hour. The rest of the day, my...

I experience increased fatigue daily four hours after taking my first pill at 6:...

Katie-LMHC-Artist

•8 months ago

6 Replies

Clinical trial results on 17p & tp53 variants in treatment naïve & relapsed patients by Dr. Furman - Oct 2022 to medical professionals

This link: https://hmpeducation.com/content/access-webcast-133 will connect to a talk by Dr. Richard Furman presented to medical professionals on the clinical...

This link: https://hmpeducation.com/content/access-webcast-133 will connect to a...

lankisterguy

Volunteer•8 months ago

7 Replies

Considerations for your fall Covid-19 vaccineTiming, mixing, and more. Dr. Katelyn Jetelina, M.P.H. Ph.D.-Your Local Epidemiologist

Considerations for your fall Covid-19 vaccine Timing, mixing, and more. KATELYN JETELINA SEP 14, 2023 Everyone over 6 months is eligible for an updated...

Considerations for your fall Covid-19 vaccine Timing, mixing, and more. KATE...

lankisterguy

Volunteer•8 months ago

19 Replies

My Recovery so far post Stem cell Transplant

Sorry I've been absent for so long, my stem cell transplant journey has been a difficult one to be honest and only now do I feel able to be able to tell the...

Sorry I've been absent for so long, my stem cell transplant journey has been a ...

Jm954

Administrator•8 months ago

84 Replies

BMB end of cycle 3 of O+V, "neutrophil bands increased from 2% to 16%" Is this a good or bad thing?

BMB end of cycle 3 of O+V, "neutrophil bands increased from 2% to 16%" Is this a good or bad?

BMB end of cycle 3 of O+V, "neutrophil bands increased from 2% to 16%" Is this a...

SurfSurf

•8 months ago

11 Replies

What’s next after pirtoimbrutinib?

My husband has been on pirtobrutinib for one year in October. He was granted a compassionate use authorization by the FDA since it had not yet been approved...

My husband has been on pirtobrutinib for one year in October. He was granted a ...

KLWC

•8 months ago

9 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2023

Medications & PBS

moving on to next treatment-considering Nurex

Default to locked to community?

CLL - Treatment timeline

treatment progression

Didn’t get daily newsfeed today

Update.

does it matter which RSV shot I get?

Lets have some good news. V+O halfway CRu.

mild struggles

Richter’s Transformation

TP53 testing

Does Untreated Asymptomatic CLL Carry Risks? …early treatment does not yet improve survival of certain patients, from 2 year study results.

Paxlovid and Lagevrio Benefit COVID Outpatients in Omicron Era September 19, 2023

Covid-19 jab - book now or wait

Nature

Newly diagnosed with cll

Hemoglobin level

Stem cell

Weight gain

Moving. CLL Specialists on the west coast US, CA, OR, WA?

Traditional chemo

Rituximab- my experience.

Interactive Tool for Managing BTK Inhibitor−Associated AEs in Hematologic Malignancies: A Global Perspective

Calquence/Acalbrutinib and Fatigue

Clinical trial results on 17p & tp53 variants in treatment naïve & relapsed patients by Dr. Furman - Oct 2022 to medical professionals

Considerations for your fall Covid-19 vaccineTiming, mixing, and more. Dr. Katelyn Jetelina, M.P.H. Ph.D.-Your Local Epidemiologist

My Recovery so far post Stem cell Transplant

BMB end of cycle 3 of O+V, "neutrophil bands increased from 2% to 16%" Is this a good or bad thing?

What’s next after pirtoimbrutinib?

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