Posts - CLL Support | HealthUnlocked

CLL Support

22,985 members • 39,471 posts

All posts for July 2024

Living with CLL

I was diagnosed in Dec of 2023 with CLL. It shocked me to the core. So many things ran through my head after hearing this news. Thankfully I have a great...

I was diagnosed in Dec of 2023 with CLL. It shocked me to the core. So many thin...

Letarosella1966

•1 month ago

13 Replies

Vitamin D & Calcium Supplements - current advice from Canadian Doctors.

Hello All, I thought this was worth passing on. I recently received the same advice from my family Doctor and CLL Specialist. "Make sure you take a vitamin...

Hello All, I thought this was worth passing on. I recently received the same ...

PoisonDwarf

•1 month ago

24 Replies

Pneumonia vaccines

hello all My question is about the Pneumovax-23 and Prevnar 13. I got the Prevnar 13 in 2015 The Pneumovax-23 in 2015 as well. Is it time to get these...

hello all My question is about the Pneumovax-23 and Prevnar 13. I got the Prev...

Mother1943

•1 month ago

11 Replies

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Dizziness and Acalabrutinib

Dizziness is listed as a very common side effect of Acal. I have had dizziness since day 1 of Acal treatment more than 5 weeks ago. I find it debilitating. Has...

Dizziness is listed as a very common side effect of Acal. I have had dizziness s...

Fogey

•1 month ago

31 Replies

Median PFS for FCR treated CLL patients with IGHV-M was 14.6 years vs 4.2 years for patients with IGHV-UM. V+O and I+R look to be superior

An update of the long-term follow-up results from the original 300-patient FCR (fludarabine, cyclophosphamide, and rituximab) study initiated at MD Anderson in...

An update of the long-term follow-up results from the original 300-patient FCR (...

AussieNeil

Administrator•1 month ago

24 Replies

Mrs Diana

I live in the UK I don’t have CLL but have a family member with this condition. We are all different but my therapist once said to me we all need lifeboats in...

I live in the UK I don’t have CLL but have a family member with this condition. ...

Oxygenlover

•1 month ago

13 Replies

Ibruvica: Is There A Charity or Support Group That Collect

I was diagnosed with CLL 4 years ago and prescribed Ibruvica (Ibrutinib). It’s a great drug with few side effects. But it is very expensive, like around...

I was diagnosed with CLL 4 years ago and prescribed Ibruvica (Ibrutinib). It’s a...

DylanPxxx

•1 month ago

10 Replies

UK winter flu vaccines, booking available

Boots are now taking bookings for the UK winter flu vaccines.

fapumpkin

•1 month ago

7 Replies

Continued Journey

Day +14: I am presently unhooked from my medication pole. It is a great feeling to be able to be more mobile around my “suite”. Accommodations here quite...

Day +14: I am presently unhooked from my medication pole. It is a great feel...

FiArt12X

•1 month ago

4 Replies

“The Lowest Levels of CLL I’ve Ever Seen”Jul 8, 2024 By Kerry A. Rogers, MD. Ibrutinib, Gazyva plus venetoclax and Sonrotoclax and Zana,

Hello, I came across this great video. Ohio State Univeristy, FYI- REMISSION- 8 PLUS YEARS OUT ...

Hello, I came across this great video. Ohio State Univeristy, FYI- REMIS...

bagelstreet225

•1 month ago

2 Replies

Obinutuzumab infusion and

Hi All had my two first infusions on Tuesday and Wednesday no issues at all despite some posts I have seen. Steroids did cause sleeping issues later but I...

Hi All had my two first infusions on Tuesday and Wednesday no issues at all des...

TheFlyer

•1 month ago

9 Replies

Thank you

To everyone who replied to my post ,thank you. I wish you all good luck with your treatments.

To everyone who replied to my post ,thank you. I wish you all good luck with yo...

manzelka

•1 month ago

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CLL treatment

I have CLL. I be am 4 months into a 1 year targeted immunotherapy plan. I receive a monthly infusion of Obitinubinazab and 300mg venclexta daily. I am very...

I have CLL. I be am 4 months into a 1 year targeted immunotherapy plan. I receiv...

IhaveCLL1

•2 months ago

9 Replies

6 weeks after Rituximab platelets have dropped

Is it normal for platelets to drop a few weeks after Rituximab treatment? Is this concerning? Immediately after last Rituximab treatment platelets were 216 and...

Is it normal for platelets to drop a few weeks after Rituximab treatment? Is thi...

Redkatt

•2 months ago

7 Replies

Doxycycline long term use

Hi, I’m 11 months into my 15 month treatment for CLL. I’m on Ibrutinib with Venetoclax and it’s suited me well, and I’m really pleased that my bloods now...

Hi, I’m 11 months into my 15 month treatment for CLL. I’m on Ibrutinib with V...

Smiley60

•2 months ago

7 Replies

about tivdak 40 mg (tisotumab)

hello everyone, I want to buy Tivdak 40 mg from USA does anyone knows the process and where can i find ?

hello everyone, I want to buy Tivdak 40 mg from USA does anyone knows the proces...

omarhan45

•2 months ago

5 Replies

diets ? Supplements?

hello, l have literally just been diagnosed with SLL Feeling shocked, anxious and not sure how l am going to tell my family…..all the usual My question is...

hello, l have literally just been diagnosed with SLL Feeling shocked, anxious ...

Northseaswimmer

•2 months ago

27 Replies

Coming off Calquence after 3 Years. The reason is I had a pain in my chest like some one was stabing me in the chest

Coming off calquence after 3 Years every thing was good I was told I was in remison . The reason I came off was a pain in the middle of my chest felt like I...

Coming off calquence after 3 Years every thing was good I was told I was in remi...

Wgsljs

•2 months ago

13 Replies

What do I ask for to check diagnosis?

These are the details I have currently

13pinkzebras

•2 months ago

7 Replies

Side effect -Zanubrutinib

Hey y’all, I started taking Zanubrutinib yesterday. I have become pretty hoarse today. Anyone else experienced this? Thanks

Hey y’all, I started taking Zanubrutinib yesterday. I have become pretty hoarse...

Nana1961

•2 months ago

4 Replies

grateful

Husband isn't on any treatment for the CLL at the moment and hasn't been since stopping Veneteclax a year after having the treatment due to various side...

Husband isn't on any treatment for the CLL at the moment and hasn't been since s...

manzelka

•2 months ago

10 Replies

UTI experience with Imbruvica

hello, when I was on Imbruvica I had many UTI. This is side effects of Imbruvica. I asked my doctor to switch me for another medication and now they m on...

hello, when I was on Imbruvica I had many UTI. This is side effects of Imbruvica...

farber

•2 months ago

2 Replies

Looking for an integrative medicine oncologist in the U.S.

I would like to find an Integrative Medicine Oncologist for consultation for Cll in the U. S, The ones I have found so far are not in my network for...

I would like to find an Integrative Medicine Oncologist for consultation for Cll...

montieth

•2 months ago

21 Replies

Safety of undercooked food

My wife has CLL and is in wait and watch. She has a lot of concern always about whether food is cooked properly or not. She is worried if the food is...

My wife has CLL and is in wait and watch. She has a lot of concern always abou...

mwelch

•2 months ago

8 Replies

Thankyou and goodbye

I just wanted to say Thankyou to each and everyone of you who have replied encouraged and shared your knowledge with me over the years . I am leaving this...

I just wanted to say Thankyou to each and everyone of you who have replied encou...

Hilo13

•2 months ago

42 Replies

raised AST (SGOT) levels and your history with CLL

when i was DX 7 years ago, my AST levels were at around 30. my oncologist hasn't said much about the fluctuations, which have gone up to 50 on occasion. so...

when i was DX 7 years ago, my AST levels were at around 30. my oncologist hasn't...

ninap

•2 months ago

5 Replies

Bug bite

I recently visited my dermatologist with a rash that was popping up all over my body especially on my upper chest. I was diagnosed with CLL/SLL about 5 years...

I recently visited my dermatologist with a rash that was popping up all over my ...

Willowbug

•2 months ago

16 Replies

21Bedlam21

I have had CLL for a couple of years now. I am on watch and wait. I have posted on this sight before. I had reconstruction from my breast cancer a number of...

I have had CLL for a couple of years now. I am on watch and wait. I have posted ...

21Bedlam21

•2 months ago

27 Replies

Influenza A

So I contracted Influenza A and was pretty ill for 4 days but still not so good despite 6 days on Tamiflu. Wondering if anyone has 1 had influenza and how...

So I contracted Influenza A and was pretty ill for 4 days but still not so good ...

skipro

•2 months ago

14 Replies

Dermatology biopsy results consistent with diagnosis of CLL. Unclear what this means?

After a long wait, I had a dermatology appointment. The dermatologist examined all my skin and found a very small 'mole' on my back that she thought was...

After a long wait, I had a dermatology appointment. The dermatologist examined...

JEEA

•2 months ago

18 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2024

Living with CLL

Vitamin D & Calcium Supplements - current advice from Canadian Doctors.

Pneumonia vaccines

Dizziness and Acalabrutinib

Median PFS for FCR treated CLL patients with IGHV-M was 14.6 years vs 4.2 years for patients with IGHV-UM. V+O and I+R look to be superior

Mrs Diana

Ibruvica: Is There A Charity or Support Group That Collect

UK winter flu vaccines, booking available

Continued Journey

“The Lowest Levels of CLL I’ve Ever Seen”Jul 8, 2024 By Kerry A. Rogers, MD. Ibrutinib, Gazyva plus venetoclax and Sonrotoclax and Zana,

Obinutuzumab infusion and

Thank you

CLL treatment

6 weeks after Rituximab platelets have dropped

Doxycycline long term use

about tivdak 40 mg (tisotumab)

diets ? Supplements?

Coming off Calquence after 3 Years. The reason is I had a pain in my chest like some one was stabing me in the chest

What do I ask for to check diagnosis?

Side effect -Zanubrutinib

grateful

UTI experience with Imbruvica

Looking for an integrative medicine oncologist in the U.S.

Safety of undercooked food

Thankyou and goodbye

raised AST (SGOT) levels and your history with CLL

Bug bite

21Bedlam21

Influenza A

Dermatology biopsy results consistent with diagnosis of CLL. Unclear what this means?

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