Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,046 posts

All posts for June 2023

What to do with leftover medications?

I recently had to change from Imbruvica to Calquence due to afib issues. I had a blister pack of doses of Imbruvica left over. That's over$10,000 at list...

I recently had to change from Imbruvica to Calquence due to afib issues. I had a...

jcb98311

•1 year ago

8 Replies

Lymphedema with CLL

I have Lymphedema in right arm and trying to determine if any connections to CLL or Acalabrutnib!

I have Lymphedema in right arm and trying to determine if any connections to CLL...

Okeefish

•1 year ago

6 Replies

Confused

Hi all, I have two questions for you today. I have been on watch and wait since 2018. Since last October I have had five courses of Anti Biotics, relating to...

Hi all, I have two questions for you today. I have been on watch and wait since ...

Vindicatrix

•1 year ago

28 Replies

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Myloproliferative disorder - and CLL

CLL has not been active for many years, and this week, at my six month check-in, my oncologist suggested she wanted to test for myloproliferative disorder....

CLL has not been active for many years, and this week, at my six month check-in,...

Marmarnix

•1 year ago

9 Replies

PICC line or not

hello every one I read every ones post everyday so hoping you can give me some advice . I had FCR in 2016/2017 which I struggled with the last 3 months of...

hello every one I read every ones post everyday so hoping you can give me some a...

mush56

•1 year ago

25 Replies

Severe bruising

I have been taking Acalabrutinib in a clinical trial for three years achieving excellent results. A few days back I tripped over uneven paving while enjoying...

I have been taking Acalabrutinib in a clinical trial for three years achieving ...

spanish36

•1 year ago

12 Replies

Shingrix may be available on Australia's National Immunisation Program for those with CLL from 1 November 2023

The Pharmaceutical Benefits Advisory Committee has recommended that Shingrix be included on Australia's National Immunisation Program for some Australians...

The Pharmaceutical Benefits Advisory Committee has recommended that Shingrix be ...

CLLerinOz

Administrator•1 year ago

4 Replies

Thanks

Thanks for everyone's concern re Shingles. The doc says hubby is healing nicely. His case is mild, no pain. He also prescribed me Shingrix, and that'll be in...

Thanks for everyone's concern re Shingles. The doc says hubby is healing nicely....

Guffy

•1 year ago

4 Replies

CAR-T Trial Update #3

Hello friends, I had planned on updating everyone much sooner, but life got in the way a bit. Last I wrote, I had received my T-cells back on June 5, 2023....

Hello friends, I had planned on updating everyone much sooner, but life got in ...

nvp815

•1 year ago

30 Replies

Venclexta

Has anyone gained weight on Ven? When starting Ven I had diarrhea and lost literally 15 lbs. After a month, I became and remained constipated and have not...

Has anyone gained weight on Ven? When starting Ven I had diarrhea and lost lite...

skipro

•1 year ago

18 Replies

venetoclax and nausea/acid reflux

Hi to the CLL community Has anyone experienced acid reflux/ gerd whilst taking Venetoclax? I am coming up to Cycle 4 of Obin which I tolerated very well ,...

Hi to the CLL community Has anyone experienced acid reflux/ gerd whilst taking ...

puppy43

•1 year ago

22 Replies

My CLL, where is the finishing line?

Just over a year ago my “Abnormal CLL” took off. I lost weight rapidly and my 22 cm spleen hurt. I was glad to be offered V+O and after a bad initial reaction...

Just over a year ago my “Abnormal CLL” took off. I lost weight rapidly and my 22...

carolly

•1 year ago

24 Replies

Patient Power Presents – Dr. Matthew S Davids: Update on Treatment Studies in Richter’s

Click on the link to watch a short video of Dr. Matthews discussing recent data related to treatment studies for Richters Transformation -...

Click on the link to watch a short video of Dr. Matthews discussing recent data ...

Smakwater

•1 year ago

8 Replies

Visit to Haematology Dept.

This morning I had a appointment to see the consultant haematologist at Scarborough Hospital, the first I have seen for about 3 years, the was because my total...

This morning I had a appointment to see the consultant haematologist at Scarboro...

Ellim

•1 year ago

7 Replies

diarrhea

Have been on Ibrutnib for 4 days. Is diarrhea a common side effect? If so does it eventually settle down????

Have been on Ibrutnib for 4 days. Is diarrhea a common side effect? If so do...

nuttynannie1947

•1 year ago

5 Replies

My state insurance might drop me this month,can someone tell me what commercial insurance covers imbruvica.

Lcan someone tell me what insurance covers imbruvica..commercial insurance

Rhodeguy

•1 year ago

16 Replies

v&o treatment fatigue improvement, When does it happen?

I started treatment v&o at the start of march ‘23, due to being very anaemic, night sweats (helped by b12 so could be menopausal) and wbc 450 ish. I was still...

I started treatment v&o at the start of march ‘23, due to being very anaemic, ni...

Livingwith67

•1 year ago

21 Replies

Having problems finding a CLL specialist.

Hi all, I wonder if you can assist. I live nr Wollongong and to be totally honest I fear going to Wollongong Hospital for anything. It’s not that big a...

Hi all, I wonder if you can assist. I live nr Wollongong and to be totally hones...

2021Ichanged

•1 year ago

9 Replies

A periodic thank you

Just a word or two of thanks to the wonderful CLL Support administrators and volunteers on this site. Their true dedication (and sometimes patience) in...

Just a word or two of thanks to the wonderful CLL Support administrators and vol...

Awksom

•1 year ago

23 Replies

Beta 2 Microglobulin

After 4 years in W & W my blood tests showed a new test called Beta 2 Microglobulin with a 2.4 rating in a (0.0. - 2.5 ) range. Can someone explain the need...

After 4 years in W & W my blood tests showed a new test called Beta 2 Microglobu...

Willowbug

•1 year ago

10 Replies

Intermittent bug attaching image to replies

If you try to attach an image to a reply, it appears to have worked, but appears within a separate box. The imsge disappears when you do a refresh. HU Support...

If you try to attach an image to a reply, it appears to have worked, but appears...

AussieNeil

Administrator•1 year ago

1 Reply

CLL and Heat (Night and day sweats)

I have read a number of places what iwCLL guidelines states that " Among the "TRIGGERS" for starting treatment are d. "Night sweats for > 1 month without...

I have read a number of places what iwCLL guidelines states that " Among the "TR...

Sillysand

•1 year ago

36 Replies

Off BTK Inhibitors

13q Muted. Under direction of my oncologist, stopped zanubrutinib July 2022 when I caught Covid. I had been on zanbrutinib for four months, and ibrutinib...

13q Muted. Under direction of my oncologist, stopped zanubrutinib July 2022 whe...

Davidcara

•1 year ago

21 Replies

AI searches- be careful!

I am posting this as information only. Someone posted a while back about google vs Ai and pointed out how new this AI is. I just had an experience that has...

I am posting this as information only. Someone posted a while back about google...

Rico49

•1 year ago

24 Replies

Lymphocite Doubling Time

Just had my second virtual meet with Hematologist. Diagnosed with CLL back in November. I live in a relatively remote community in British Columbia so all my...

Just had my second virtual meet with Hematologist. Diagnosed with CLL back in N...

CRC4747

•1 year ago

4 Replies

Shingles

Hi peeps! Hope we're all doing well. Just a quick question for someone. My husband has just been diagnosed with shingles, poor man. He's already had the vac,...

Hi peeps! Hope we're all doing well. Just a quick question for someone. My husba...

Guffy

•1 year ago

15 Replies

Bone Pain

I was diagnosed with CLL/SLL in 2019. I have the usual fatigue all the time along with a few other issues. Now, I am having bone pain in my rib cage. It’s in...

I was diagnosed with CLL/SLL in 2019. I have the usual fatigue all the time alo...

Willowbug

•1 year ago

10 Replies

COVID Jab 7

Well, that's me had my 7th jab - this morning, courtesy of Scottish NHS - the Pfizer bi-valent this time. Arm being remarkable quiet about it so far. It...

Well, that's me had my 7th jab - this morning, courtesy of Scottish NHS - the Pf...

G1llHa1n

•1 year ago

7 Replies

Finding travel insurance

Trying to find reasonable travel insurance whilst on medication.is it deemed as undergoing treatment?

Trying to find reasonable travel insurance whilst on medication.is it deemed as ...

Choccy10

•1 year ago

8 Replies

switch from Imbruvika to Calquine

hello team, my doctor decide to switch me from Imbruvica to Calquune. Did any body have the same situation ? Thx Nata

hello team, my doctor decide to switch me from Imbruvica to Calquune. Did any bo...

farber

•1 year ago

6 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2023

What to do with leftover medications?

Lymphedema with CLL

Confused

Myloproliferative disorder - and CLL

PICC line or not

Severe bruising

Shingrix may be available on Australia's National Immunisation Program for those with CLL from 1 November 2023

Thanks

CAR-T Trial Update #3

Venclexta

venetoclax and nausea/acid reflux

My CLL, where is the finishing line?

Patient Power Presents – Dr. Matthew S Davids: Update on Treatment Studies in Richter’s

Visit to Haematology Dept.

diarrhea

My state insurance might drop me this month,can someone tell me what commercial insurance covers imbruvica.

v&o treatment fatigue improvement, When does it happen?

Having problems finding a CLL specialist.

A periodic thank you

Beta 2 Microglobulin

Intermittent bug attaching image to replies

CLL and Heat (Night and day sweats)

Off BTK Inhibitors

AI searches- be careful!

Lymphocite Doubling Time

Shingles

Bone Pain

COVID Jab 7

Finding travel insurance

switch from Imbruvika to Calquine

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