Posts - CLL Support | HealthUnlocked

CLL Support

22,745 members • 39,029 posts

All posts for June 2020

Atypical lymphoid proliferation - colon, and neck?

Hi, I haven't posted here yet. I was diagnosed with CLL at age 43 in 2012 (13Q, Unmutated) and was treated in 2015 with Bendamustine/Gazyva. I had a routine...

Hi, I haven't posted here yet. I was diagnosed with CLL at age 43 in 2012 (13Q,...

CoCoLuna11

•4 years ago

8 Replies

Lymphocyte count

I thought by virtue of the name that the lymphocyte count was important! My previous consultant, now apparently retired, always just mentioned this and said if...

I thought by virtue of the name that the lymphocyte count was important! My prev...

JanChas

•4 years ago

4 Replies

Worried!!

Has anyone been on Venetoclax and Rituximab? I am starting treatment in a few weeks and worried about side effects. I had to come off Ibrutinib after just 7...

Has anyone been on Venetoclax and Rituximab? I am starting treatment in a few w...

Abc123qaz

•4 years ago

26 Replies

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Covid19 recovery

Posted this reply to another post, just to give some hope. I didn’t feel that good about two weeks ago, sore throat and slight fever. Oncologist told me to get...

Posted this reply to another post, just to give some hope. I didn’t feel that go...

Alex830

•4 years ago

17 Replies

Rottie 1934

Have purple spots on my arm & thigh. Does anyone had anything like this on their body while on imbruvica?

Have purple spots on my arm & thigh. Does anyone had anything like this on their...

Rottie1934

•4 years ago

6 Replies

Plummeting leukocytes

Greetings from Paris, I've been on Venetoclax for a year and a half just 2 pills half the usual dose) and I've been feeling great if a little tired, but there...

Greetings from Paris, I've been on Venetoclax for a year and a half just 2 pills...

CarmenfromParis

•4 years ago

8 Replies

Treatment options in Germany?

My first post here! Male, diagnosed with CLL ~9 months ago. Ultrasound check confirmed enlarged spleen and some nodes within my body (but not around...

My first post here! Male, diagnosed with CLL ~9 months ago. Ultrasound check con...

mantana

•4 years ago

7 Replies

CLL and the Keto diet

I went on strict Keto starting in January. My labs in March came back showing everything almost at normal levels. I was borderline stage 3 CLL now I am back to...

I went on strict Keto starting in January. My labs in March came back showing ev...

DAN1980

•4 years ago

82 Replies

Cutis

Hi everyone, on watch and wait for 11mnths now, this has started happening, should I be worried?

Hi everyone, on watch and wait for 11mnths now, this has started happening, shou...

Shiresboy

•4 years ago

4 Replies

Rottie

Can someone explain the following comments on my report after seeing my oncologists/homotologist : Zap70 is high with igvh unmutatet. Thanks

Can someone explain the following comments on my report after seeing my oncolog...

Rottie1934

•4 years ago

4 Replies

Ibrutinib - Joint Pain

I have had CLL for 20 years and have been on Ibrutinib for 3 years. In recent months I have been suffering with aches and pain in the wrists, hand knuckles,...

I have had CLL for 20 years and have been on Ibrutinib for 3 years. In recent m...

RobertCLL

•4 years ago

13 Replies

Acalabrutinib treatment yes or no

So my haematologist has been able to get me access to Acalabrutinib. I’m excited about this. But also a little uncertain. I’d like some wider advice from you...

So my haematologist has been able to get me access to Acalabrutinib. I’m excited...

Direstraits12

•4 years ago

32 Replies

Co-vid 19 vaccine targets espied with cancer immunotherapy eyes

Developers of COVID-19 vaccines need inspiration, and it may come from cancer researchers. And why not? Viruses and cancers share certain behaviors to help...

Developers of COVID-19 vaccines need inspiration, and it may come from cancer re...

cllady01

Former Volunteer•4 years ago

2 Replies

Fatigue and Lethargy

What a joy to listen to someone so on top of his game, thank you Adrian and indeed Prof. Hillman. I have one question. Prof. Hillman confirmed that fatigue,...

What a joy to listen to someone so on top of his game, thank you Adrian and inde...

smithyboy

•4 years ago

16 Replies

Corona- now home from hospital!

I write this to let you know that there can be a way out of Covid. I consider myself very lucky, and very well treated. It was a tough time to get through...

I write this to let you know that there can be a way out of Covid. I consider my...

Accordion

•4 years ago

58 Replies

Newbie, Acalabrutinib for CLL as initial treatment

I was diagnosed with CLL in 2017 was due to start Chemotherapy this April but this was delayed by covid19, have been offered Acalabrutinib anyone have any...

I was diagnosed with CLL in 2017 was due to start Chemotherapy this April but th...

Hippalus99

•4 years ago

14 Replies

Any tips on moving house safely?

I am new here but have been taking Ibrutinib and Venetoclax for 18 months on the UK Flair clinical trial. I have been shielding since 18th March. For personal...

I am new here but have been taking Ibrutinib and Venetoclax for 18 months on the...

Jds7

•4 years ago

20 Replies

No test undertaken yet

I’ve had plenty of antibiotics & antivirals & blood tests but none of the big boy tests yet. My swollen lymph’s have leapt back to pre treatment size &...

I’ve had plenty of antibiotics & antivirals & blood tests but none of the big bo...

Sepsur

•4 years ago

58 Replies

Forearm Pain from Imbruvica

How do I relieve the pain in my forearms? I take 140mg of Imbruvica. Thanks

brooklyn7672

•4 years ago

7 Replies

Imbruvica and low Hemoglobin

I started on Imbruvica April 13. After some weeks needed blood transfusion 3 bags to improve my hemoglobin which was at 66. Then I felt pretty good for some...

I started on Imbruvica April 13. After some weeks needed blood transfusion 3 bag...

Kmegood

•4 years ago

20 Replies

Bone marrow biopsy results

Hi everyone, we just had a phone call from my husband hematologist/ oncologist. She said in bone marrow and flow symmetry they didn’t find any evidence of any...

Hi everyone, we just had a phone call from my husband hematologist/ oncologist. ...

FM1116

•4 years ago

7 Replies

How does NHS treatment compare with elsewhere?

I'm on watch and wait and was looking at the CLL support website, according to which you're likely to get ibrutinib here after other treatments don't work. I...

I'm on watch and wait and was looking at the CLL support website, according to w...

Research123

•4 years ago

21 Replies

CLL Society Support Group VIRTUAL Meetings Coming Up!

CLL Society Support Group Meetings Coming Up! location map: https://cllsociety.org/cll-specific-patient-support-groups/ or calendar:...

CLL Society Support Group Meetings Coming Up! location map: https://cllsociet...

lankisterguy

Volunteer•4 years ago

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Is this cancer?!

Hello. I'm scheduled for full abdomen ultrasound this saturday. I felt a pain on my upper left abdomen right below the ribs. It comes and goes. This has been...

Hello. I'm scheduled for full abdomen ultrasound this saturday. I felt a pain on...

anxiousbabe27

•4 years ago

3 Replies

Poikilocytosis and Burr cells

I have CLL, the slow moving type since 2013; am 68 yrs old. My blood work is not that much out of the normal range and I feel fine. Had my standard checkup...

I have CLL, the slow moving type since 2013; am 68 yrs old. My blood work is no...

markjeep51

•4 years ago

8 Replies

Painful flesh

Does any one experience pain when touching your flesh Is this a side effect of CLL When I try to massage my legs it is so painful to touch I asked the doctor...

Does any one experience pain when touching your flesh Is this a side effect of ...

Altindal22

•4 years ago

11 Replies

How to Hug During a Pandemic

Hugging is such an essential expression of love and affection for many of us. As the lock downs start to ease and if we start meeting other people, especially...

Hugging is such an essential expression of love and affection for many of us. As...

Jm954

Administrator•4 years ago

11 Replies

Hiccups?

My husband's SLL did not respond adequately to Ibrutinib and he is being transitioned to Obinutuzumab infusions for 6 months and starting Venetoclax orally in...

My husband's SLL did not respond adequately to Ibrutinib and he is being transit...

alexismitchell51

•4 years ago

13 Replies

New to this site

Hi, diagnosed with CLL in 2013, no symptoms, surveillance (aka W&W) until Aug 2019. By then, had large node growths on neck and had repeated eye infections,...

Hi, diagnosed with CLL in 2013, no symptoms, surveillance (aka W&W) until Aug 20...

26thCI

•4 years ago

20 Replies

My Ibrutinib/venetoclax journey

Hi all, I hope, despite the current situation in general you are all coping. I had planned to write this post in the second week if April but everything was...

Hi all, I hope, despite the current situation in general you are all coping. I...

Oleboyredw-uk

•4 years ago

28 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for June 2020

Atypical lymphoid proliferation - colon, and neck?

Lymphocyte count

Worried!!

Covid19 recovery

Rottie 1934

Plummeting leukocytes

Treatment options in Germany?

CLL and the Keto diet

Cutis

Rottie

Ibrutinib - Joint Pain

Acalabrutinib treatment yes or no

Co-vid 19 vaccine targets espied with cancer immunotherapy eyes

Fatigue and Lethargy

Corona- now home from hospital!

Newbie, Acalabrutinib for CLL as initial treatment

Any tips on moving house safely?

No test undertaken yet

Forearm Pain from Imbruvica

Imbruvica and low Hemoglobin

Bone marrow biopsy results

How does NHS treatment compare with elsewhere?

CLL Society Support Group VIRTUAL Meetings Coming Up!

Is this cancer?!

Poikilocytosis and Burr cells

Painful flesh

How to Hug During a Pandemic

Hiccups?

New to this site

My Ibrutinib/venetoclax journey

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