Posts - CLL Support | HealthUnlocked

CLL Support

22,987 members • 39,473 posts

All posts for August 2020

Help understanding latest blood results

Hi lovely people, i need help understanding my latest results . My recent Lymphocyte results are 55.12my consultant said that the Lymps is slowly rising...

Hi lovely people, i need help understanding my latest results . My recent Lymph...

Maisey0

•4 years ago

4 Replies

Kidney fouling during CLL watch and wait

This is a bit of a geeky question. I'd like to know the mechanism behind CLL causing the kidney to start plugging up with protein, leading to elevated...

This is a bit of a geeky question. I'd like to know the mechanism behind CLL cau...

PhotonPal

•4 years ago

8 Replies

Is 6 months too long for seeing a hematologiest Diagnosed june 30th with leukemia

maybe someone can help me out here. June 30th i was diagnosed with leukemia via a cbc blood count. So my doctor wants me to see a hematologiest but do to my...

maybe someone can help me out here. June 30th i was diagnosed with leukemia via...

yapplekamp

•4 years ago

28 Replies

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Venetoclax therapy- bloodshot eye

I suddenly have a bloodshot eye. I have CLL and starting today on 200mg ramp up on Venetoclax. Has anyone else experienced this. I saw my consultant yesterday...

I suddenly have a bloodshot eye. I have CLL and starting today on 200mg ramp up ...

aloneifly

•4 years ago

10 Replies

CLL - Venclexta/Gazyva do’s and dont’s

This may be an asinine question, but can I assume alcohol of any amount should be avoided with this treatment plan? Thanks.

This may be an asinine question, but can I assume alcohol of any amount should b...

msccsm11

•4 years ago

11 Replies

Ibrutinib and returning of symptoms of tiredness and fatigue

I am based in the UK. I was diagnosed with CLL on the 3rd March this year. I developed Lymph Nodes, was very tired and fatigued most days, coughed a lot and...

I am based in the UK. I was diagnosed with CLL on the 3rd March this year. I dev...

Dym230109

•4 years ago

7 Replies

Stopping Ibrutinib?

Husband has been on Ibrutinib for 2 years and numbers were good until about 4 months when his WBC and Neutrophils dropped dramatically. WBC is now 2.2 and...

Husband has been on Ibrutinib for 2 years and numbers were good until about 4 mo...

kathymac52

•4 years ago

5 Replies

Cold showers - good or bad?

Before I was diagnosed I'd have a hot shower then turn the shower to cold for 2 mins. The theory was it might boost my immune system. With CLL tho I figure the...

Before I was diagnosed I'd have a hot shower then turn the shower to cold for 2 ...

Research123

•4 years ago

10 Replies

My mom has been on Ibrutinib for 1year.Her latest report shows low platelet count 120 with giant platelets. HB and TLC ok. Significance?

Mom has been on Ibrutinib for a year and a half.Her latest report shows low platelet count120 with giant platelets. HB and TLC ok. What does that signify?

Mom has been on Ibrutinib for a year and a half.Her latest report shows low plat...

Kamlesh70

•4 years ago

2 Replies

Interesting article about the effects of fasting.

https://nationalpost.com/health/fasting-for-three-days-renews-entire-immune-system-protects-cancer-patients-remarkable-new-study-finds I came across this...

https://nationalpost.com/health/fasting-for-three-days-renews-entire-immune-syst...

LeoPa

•4 years ago

40 Replies

CLL side effects

Hi everybody , I am 78 years old male, I have been on Ibrutinib for 3 years with excellent control of my CLL , with minimal side effects (bruising ) except for...

Hi everybody , I am 78 years old male, I have been on Ibrutinib for 3 years with...

JJSI

•4 years ago

5 Replies

Ibrutinib and Covid 19

Is it true? Those taking a normal full of Ibrutinib are apparently immune from the full symptoms of Covid 19 and suffer mild symptoms not even requiring...

Is it true? Those taking a normal full of Ibrutinib are apparently immune from t...

Berrytog

•4 years ago

10 Replies

Roaming Bone Pain - is it CLL related???

Hi guys - my husband has been newly diagnosed with CLL. He has been complaining of intense bone pain and joint pain. Sometimes the pain is burning and achy for...

Hi guys - my husband has been newly diagnosed with CLL. He has been complaining ...

12345Whatabout678910

•4 years ago

11 Replies

Treatment for CLL from NEJM

A very interesting article from New England Journal of Medicine ( if you have trouble with link I have it saved as a Word Document also just let me know):...

A very interesting article from New England Journal of Medicine ( if you have tr...

jdolinger

•4 years ago

19 Replies

Increase in WBC

I was diagnosed with CLL in 2010 and have been on Watch & Wait since. My WBC has regularly been 30+. I also have rheumatoid and osteoarthritis and in 2017/18...

I was diagnosed with CLL in 2010 and have been on Watch & Wait since. My WBC has...

tyke3poppy4

•4 years ago

5 Replies

Skin Cancer

I have a "secondary" cancer of my face skin, it is a Basal Cell Carcinoma about 15 mm across and is now bloody and looks a bit angry and continues to grow,...

I have a "secondary" cancer of my face skin, it is a Basal Cell Carcinoma about ...

Motorman

•4 years ago

19 Replies

Save the date! #WorldLeukemiaDay is on 4th September.

World Leukemia Day on 4th September is a global campaign run in collaboration by patient groups from across the globe It’s the one day of the year people from...

World Leukemia Day on 4th September is a global campaign run in collaboration by...

HAIRBEAR_UK

Founder Admin•4 years ago

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Ibranib side effects

I've just started taking ibrutanib and feel dreadful. I guess this will pass but I'd be interested to know how long. Anyone had a similar experience.

I've just started taking ibrutanib and feel dreadful. I guess this will pass but...

GD-K

•4 years ago

10 Replies

IVIG HELP

I have low IGG so I have IVIG every other month. I have to take it with a 25 drip or I get bad side effects It takes 8 hours for the infusion I’m given...

I have low IGG so I have IVIG every other month. I have to take it with a 25 dri...

Kyranbigeyes

•4 years ago

18 Replies

Blood results in CBC

Hi All, I wrote two months ago that my blood work had returned to normal after two abnormal and a tentative dx of CLL. Well, this month it is abnormal again....

Hi All, I wrote two months ago that my blood work had returned to normal after ...

gustave

•4 years ago

1 Reply

Ibrutinib and Dryness

Hi Everyone, wondering if anyone has thoughts or suggestions for the following. On ibrutinib for 3 months now ( first line treatment). Starting to feel dried...

Hi Everyone, wondering if anyone has thoughts or suggestions for the following. ...

Davidcara

•4 years ago

23 Replies

Free Prescription home deliveries appear to have been stopped by Boots

Since the start of lockdown my local Boots pharmacy has been efficiently delivering my prescriptions to my front door. Latest was sent my GP to them 2 weeks...

Since the start of lockdown my local Boots pharmacy has been efficiently deliver...

Harvist

•4 years ago

3 Replies

NH Lymphoma

is there a community for lymphoma in Australia

babytan

•4 years ago

1 Reply

Rutuximab

I was first diagnosed with CLL in November, 2017. My Oncologist immediately started me on 60mg Prednisone and began reducing the amount commensurate with my...

I was first diagnosed with CLL in November, 2017. My Oncologist immediately sta...

Hidden

•4 years ago

16 Replies

Tp53 (17p13.2)

How effective is Ibrutinib with Rituximab (6 rounds) for a Tp53 deletion.

ANA4

•4 years ago

10 Replies

How to tell if Ibutinib is working?

I started my first Ibutinib pill July, 01, 2020 Going for tests every three weeks. Doctor said just do one day at a time! My thoughts are running with that, I...

I started my first Ibutinib pill July, 01, 2020 Going for tests every three week...

Tapps

•4 years ago

13 Replies

Neutropenic diet

How important is dietary restriction after neutrophil count has collapsed? Some studies suggest not to worry, just eat a balanced diet. If one were to...

How important is dietary restriction after neutrophil count has collapsed? Some ...

PhotonPal

•4 years ago

16 Replies

SLL/CLL Numbers

Thanks for all of you with your previous replies. As you know I have been diagnosed last month with SLL/CLL and now I have all my test results. I hope you...

Thanks for all of you with your previous replies. As you know I have been diagn...

Egypt58

•4 years ago

6 Replies

Introduction

Well, I tried to fill out my profile but it seems it won't let you add more than one treatment :(. Maybe I'll try again later, maybe, but it's an unpromising...

Well, I tried to fill out my profile but it seems it won't let you add more than...

sphexx

•4 years ago

9 Replies

CLL Society ASCO 2020 Dr. Koffman discusses a study of the long-term follow-up of anti-CD19 CAR T-cell therapy for B-cell CLL

ASCO 2020 Conference Coverage This week we are continuing our countdown of Dr. Koffman's “Top 12” CLL-relevant abstracts with short videos and accompanying...

ASCO 2020 Conference Coverage This week we are continuing our countdown of Dr. K...

bkoffman

CLL CURE Hero•4 years ago

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Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2020

Help understanding latest blood results

Kidney fouling during CLL watch and wait

Is 6 months too long for seeing a hematologiest Diagnosed june 30th with leukemia

Venetoclax therapy- bloodshot eye

CLL - Venclexta/Gazyva do’s and dont’s

Ibrutinib and returning of symptoms of tiredness and fatigue

Stopping Ibrutinib?

Cold showers - good or bad?

My mom has been on Ibrutinib for 1year.Her latest report shows low platelet count 120 with giant platelets. HB and TLC ok. Significance?

Interesting article about the effects of fasting.

CLL side effects

Ibrutinib and Covid 19

Roaming Bone Pain - is it CLL related???

Treatment for CLL from NEJM

Increase in WBC

Skin Cancer

Save the date! #WorldLeukemiaDay is on 4th September.

Ibranib side effects

IVIG HELP

Blood results in CBC

Ibrutinib and Dryness

Free Prescription home deliveries appear to have been stopped by Boots

NH Lymphoma

Rutuximab

Tp53 (17p13.2)

How to tell if Ibutinib is working?

Neutropenic diet

SLL/CLL Numbers

Introduction

CLL Society ASCO 2020 Dr. Koffman discusses a study of the long-term follow-up of anti-CD19 CAR T-cell therapy for B-cell CLL

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