Posts - CLL Support | HealthUnlocked

CLL Support

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All posts for June 2024

Zanubrutinib or Venetaclax with Gazyva??

Can everyone please tell me their experience with these treatments? I’ve been given the options of either if trial not ready. I was suppose to start a phase 3...

Can everyone please tell me their experience with these treatments? I’ve been gi...

Nana1961

•2 months ago

14 Replies

Update day 6 - Treatment fir Richter’s Transformation

Finally had my stat MRI 24 hours after the reaction. In this hospital stat is anytime within 24 hours of order written. MRI did not show tissue swelling or...

Finally had my stat MRI 24 hours after the reaction. In this hospital stat is an...

ReneeSusan

•2 months ago

20 Replies

Update Day 4 of Treatment for Richters Transformation

Had a major hick up day 4. The beginning of an anaphylaxis reaction. Chemo stopped. Rapid response team called and in my room in 2 minutes. Got IV benedryl,...

Had a major hick up day 4. The beginning of an anaphylaxis reaction. Chemo stop...

ReneeSusan

•2 months ago

5 Replies

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cramp

Drink tonic water; I do every night before I go to bed. It really does work. Furthermore, keep some by your bedside, just in case. I was conducting a two-hour...

Drink tonic water; I do every night before I go to bed. It really does work. Fur...

CJAHELYER

•2 months ago

7 Replies

Pemgarda

What are your thoughts on Pemgarda. Is anyone getting it? Good idea or bad? per my cll Doctor he said not to take it. Not enough is known about its side...

What are your thoughts on Pemgarda. Is anyone getting it? Good idea or bad? per ...

Dinasantos

•2 months ago

4 Replies

sleep Issues with obinutuzamab?

I have had 2 infusions to date and after a rough reaction during first one the second one went well and body is reacting well. However, after second one my...

I have had 2 infusions to date and after a rough reaction during first one the s...

Nbk59ct

•2 months ago

7 Replies

Re-inoculate?

Hello you wonderful and oh-so-knowledgeable folks! This is a good-news story. After 11 months on a zanu-obin-venetoclax trial I've been in remission for 3...

Hello you wonderful and oh-so-knowledgeable folks! This is a good-news story....

mouseandchair

•2 months ago

9 Replies

Fatigue

Does anyone have any tips for managing fatigue - I find this overtakes my life daily, and if I do anything it can take me days, even a week, to recover!

Does anyone have any tips for managing fatigue - I find this overtakes my life d...

Alibaba26

•2 months ago

29 Replies

CRAMP

My husband is getting severe bouts of Cramp, any ideas on what he can do or take would be gratefully received. Thank you in advance.

My husband is getting severe bouts of Cramp, any ideas on what he can do or take...

opal11uk

•2 months ago

65 Replies

CLL/CML treatment update

Hi All, Thank you for your passed and continuing help and support. Been taking dasatsnib since 2018 or 2019; with 1 incidence of Pleural...

Hi All, Thank you for your passed and continuing help and support. Been ta...

tedrog

•2 months ago

2 Replies

Microbiome discovery

“The balance between bacterial communities in the gut affects the likelihood of a positive response to drugs called checkpoint inhibitors.”...

“The balance between bacterial communities in the gut affects the likelihood of ...

Rando21

•2 months ago

4 Replies

Soursop

I’ve heard good things about soursop. Anyone else heard any first hand stories or tried it personally? “Another test-tube study looked at the effects of...

I’ve heard good things about soursop. Anyone else heard any first hand stories ...

Rando21

•2 months ago

22 Replies

IgG Testing, Immunoglobulin Replacement Therapy, and Infection Outcomes in Patients with CLL or NHL: Real-World Evidence

CLL is well characterised as a cancer of the immune system, hence CLL specialists recommend keeping up to date with non-live vaccinations...

CLL is well characterised as a cancer of the immune system, hence CLL specialist...

AussieNeil

Administrator•2 months ago

8 Replies

Adapt and keep moving forward

It can be so easy at times to get lost in all the adversity that comes from CLL, treatment and this life. I don't want to list all the hard, gut...

It can be so easy at times to get lost in all the adversity that comes from CLL,...

skipro

•2 months ago

35 Replies

p17 deletion

My Gp estimates I have 5 years. I am 77 and should not complain if that is all I have. I wonder how many of our lists have the C53 with 17p deletion and how...

My Gp estimates I have 5 years. I am 77 and should not complain if that is all I...

DianeSH

•2 months ago

68 Replies

Remission

Back in November I noticed a swelling under my arm. My doctor set me up with ultrasounds and found it was swollen lymph nodes. After the surgery in December to...

Back in November I noticed a swelling under my arm. My doctor set me up with ult...

Bobby9toes

•2 months ago

12 Replies

when to treat?

diagnosed in 2014 platelets now 68 with no other symptoms other than high wbc . Feeling healthy. When should I take treatment? Doctors have provided further...

diagnosed in 2014 platelets now 68 with no other symptoms other than high wbc ....

Mijoj3112

•2 months ago

15 Replies

abnormal colonoscopy

Hi, wondering has anyone had any CLL cells , particularly neutrophils, cause an ulcer in their colon!! I’m waiting for results, I’m just wondering if my CLL...

Hi, wondering has anyone had any CLL cells , particularly neutrophils, cause an ...

Gino23

•2 months ago

6 Replies

STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)

Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete...

Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, ...

dwolden

•2 months ago

26 Replies

Pure red cell aplasia

Anybody experience with this seldom disease?

seoul1949

•2 months ago

5 Replies

Gallbladder removal with low platelets

I am in remission with CLL and now after a visit to A&E because of agonising pain they discovered Gallstones and want to remove my Gallbladder asap. My last...

I am in remission with CLL and now after a visit to A&E because of agonising pa...

MalcT

•2 months ago

20 Replies

Grandads boys

Hi I started a trial for CLL 3 months ago,I am on a trial & started taking zanubrutinib for 3 cycles,I have started to take Sonrotoclax from yesterday as well...

Hi I started a trial for CLL 3 months ago,I am on a trial & started taking zanu...

Grandadsboys

•2 months ago

11 Replies

Importance of CLL Specialist

This excellent study was just published. Why should you get a CLL specialist? My community oncologist gave me a fish and a flow test and told me that I...

This excellent study was just published. Why should you get a CLL specialist? My...

PennyLane2024

•2 months ago

7 Replies

Continued Journey

I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I have 5 days of chemo starting Friday this week, with a rest day before the BMT....

I will be starting the prep for my Bone Marrow Transplant (June 27) Friday. I ha...

FiArt12X

•2 months ago

35 Replies

Complete Remission

My Complete Blood Count (CBC) results state the normal range for Lymphocytes is 850-3900 cells/uL. The NCCN CLL guidelines for Complete Remission (CR) states...

My Complete Blood Count (CBC) results state the normal range for Lymphocytes is ...

leftysfsl1945

•2 months ago

6 Replies

MRD - Flow test compared to clonoSEQ

I just got this result after a year of Acalabrutinib and Venetoclax on the Majic trial. I'm currently waiting for the clonoSEQ MRD6 results. Below...

I just got this result after a year of Acalabrutinib and Venetoclax on the Majic...

JDG45

•2 months ago

6 Replies

2nd gen BCL-2 inhibitor in trials and looking promising -- Sonrotoclax (BGB-11417)

https://www.beigenemedical.com/CongressDocuments/Tam_BGB-11417-101_ASH_Presentation_2023.pdf This is a combo trial, sonrotoclax and Zanubrutinib on treatment...

https://www.beigenemedical.com/CongressDocuments/Tam_BGB-11417-101_ASH_Presentat...

PulsedTherapy

•2 months ago

16 Replies

6 months after diagnosis, ALC going up?

Hi everyone, I was diagnosed with CLL in early Dec 2023. I am not fully asymptomatic as one of my underarm lymph nodes is mildly enlarged. I also think I feel...

Hi everyone, I was diagnosed with CLL in early Dec 2023. I am not fully asympto...

sleepyjean75

•2 months ago

29 Replies

To Bone marrow biopsy or not to bone marrow biopsy that is the question.

Hi everyone, I’m not sure if this is the right forum. Previously it was thought I had pernicious anaemia (I’m in that forum too) but then they weren’t sure. I...

Hi everyone, I’m not sure if this is the right forum. Previously it was thought...

Tellingbones

•2 months ago

14 Replies

First Treatment for Richter’s Today

I was admitted into the hospital today for 5 days of DA EPOCH R w Venetoclax for large diffuse large b cell lymphoma, Richter’s Transformation, of my CLL....

I was admitted into the hospital today for 5 days of DA EPOCH R w Venetoclax for...

ReneeSusan

•2 months ago

46 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2024

Zanubrutinib or Venetaclax with Gazyva??

Update day 6 - Treatment fir Richter’s Transformation

Update Day 4 of Treatment for Richters Transformation

cramp

Pemgarda

sleep Issues with obinutuzamab?

Re-inoculate?

Fatigue

CRAMP

CLL/CML treatment update

Microbiome discovery

Soursop

IgG Testing, Immunoglobulin Replacement Therapy, and Infection Outcomes in Patients with CLL or NHL: Real-World Evidence

Adapt and keep moving forward

p17 deletion

Remission

when to treat?

abnormal colonoscopy

STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)

Pure red cell aplasia

Gallbladder removal with low platelets

Grandads boys

Importance of CLL Specialist

Continued Journey

Complete Remission

MRD - Flow test compared to clonoSEQ

2nd gen BCL-2 inhibitor in trials and looking promising -- Sonrotoclax (BGB-11417)

6 months after diagnosis, ALC going up?

To Bone marrow biopsy or not to bone marrow biopsy that is the question.

First Treatment for Richter’s Today

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