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CLL Support

22,523 members • 38,686 posts

All posts for August 2019

Nutrition & lifestyle changes instead of just pills

I realize medications are needed to treat some diseases. However, most doctors received woefully little nutrition training in medical school. They’ve...

I realize medications are needed to treat some diseases. However, most doctors r...

Hidden

•5 years ago

22 Replies

Medicare payments

Does anyone know if Medicare pays for the Gazyva infusions?

AuntHelen

•5 years ago

14 Replies

2nd Update on Possible Richters Transformation

The upside is I don’t have RT, but I did pick up some more high risk markers in addition to : 11q and unmutated. I learned in July the results of the DNA...

The upside is I don’t have RT, but I did pick up some more high risk markers in ...

ReneeSusan

•5 years ago

34 Replies

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Cll and prediabetes anyone?

Anyone know if there is any connection between cll and prediabetes?

sbkris1

•5 years ago

2 Replies

ASH 2018: Dr. Chadi Nabhan on the Cost of Ibrutinib vs. Chemo vs Chemoimmunotherapy in CLL and on way too much chemo being used.

Hi, If you have been on our website recently you have already met Dr. Nabhan talking about patient reported outcomes. This time at ASH 2018, we also discussed...

Hi, If you have been on our website recently you have already met Dr. Nabhan tal...

bkoffman

CLL CURE Hero•5 years ago

12 Replies

Factors Identified for Risk of Second Cancer in CLL Following BTK Inhibition

There was hope that non-chemo CLL treatments would avoid the increased risk of subsequent secondary cancers, with concern about Myelodysplasia Syndromes and...

There was hope that non-chemo CLL treatments would avoid the increased risk of s...

AussieNeil

Administrator•5 years ago

28 Replies

FCR and immunosuppression

For those of us who have had FCR chemotherapy would we expect to be immunocompromised in the long-term? I think here lymphocyte and neutrophil levels are...

For those of us who have had FCR chemotherapy would we expect to be immunocompro...

Jotame

•5 years ago

18 Replies

venetoclax

I have been on venetoclax since end of May and am on 100mg and have normal wbc, rbc, abs lymphocytes, hgb etc. only globulin(1.4Low) & albumin/globulin...

I have been on venetoclax since end of May and am on 100mg and have normal wbc, ...

greygirl

•5 years ago

5 Replies

Imbruvica

Hello, it's me again, Rosa. I'm starting my 9th week on Imbruvica. Still get the blisters in my mouth about an hour after I take the pill. Sometimes none,...

Hello, it's me again, Rosa. I'm starting my 9th week on Imbruvica. Still get t...

brooklyn7672

•5 years ago

1 Reply

Calquence headache question

My wife has just Calquence and has”waves” of light headaches in the front part of brain. Her question to others taking calquence is the front headache area the...

My wife has just Calquence and has”waves” of light headaches in the front part o...

GL64

•5 years ago

8 Replies

What about SLL.in Canada.....im in Ontario

Im a 71year old recently diagnosed with SLL im worried..never thought id have cancer!!I I already have MS....enough already!!! Having a ct scan next...

Im a 71year old recently diagnosed with SLL im worried..never thought id hav...

Stelladoro

•5 years ago

29 Replies

CT scan results after 3 cycles BR

Hello all, My dad (12 trisomy and unmutated) has finished his 3rd BR cycle. The CT scan shows a reduction of the lymph nodes by 50%-60% (the biggest lymph...

Hello all, My dad (12 trisomy and unmutated) has finished his 3rd BR cycle. The...

TOFK

•5 years ago

6 Replies

Probiotics with ibrutanib

My husband has had to be on the antibiotic Clindamycin for a week following a nasty cut from rusty metal. He has been on ibrutanib for three years. He's...

My husband has had to be on the antibiotic Clindamycin for a week following a na...

Poohey

•5 years ago

11 Replies

Getting a Port tomorrow..Anything I should know or do?

Getting a Port tomorrow... anything I should know?

Butitisme

•5 years ago

7 Replies

Patient Reported Outcomes

Hi, Patient reported outcomes (PROs) should be part of every clinical trial. Patients can best report what patients experience. And it improves their outcomes...

Hi, Patient reported outcomes (PROs) should be part of every clinical trial. Pat...

bkoffman

CLL CURE Hero•5 years ago

5 Replies

Feedback on my new treatment options, what to do?

Hi everyone. So here goes: in short, after a long period of watch and wait, I have been told I need treatment again. Was always told I would eventually need...

Hi everyone. So here goes: in short, after a long period of watch and wait, I ...

Davdow

•5 years ago

11 Replies

Marginal zone lymphoma Facebook support group

https://www.facebook.com/groups/1734968436810226/?ref=share Hi, Hope you don’t mind my sharing a link to the marginal zone lymphoma Facebook site for the...

https://www.facebook.com/groups/1734968436810226/?ref=share Hi, Hope you don’t...

Judyanne

•5 years ago

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Acalabrutinib Achieved Breakthrough Designation for CLL

This now fast-tracks Acalabrutinib (Calquance) for full FDA approval....

Lily_Pad_Master

•5 years ago

58 Replies

A Tool to Select Candidates for Allogeneic Hematopoietic Cell Transplant in CLL but do we need it?

August 14, 2019 From this it's clear that transplant is not an easy decision to make and the new targeted treatments may have changed the landscape again....

August 14, 2019 From this it's clear that transplant is not an easy decision to...

Jm954

Administrator•5 years ago

5 Replies

Employer's insurance vs. Medicare for Imbruvica

I am on my employer's Blue Cross Blue Shield plan which has a zero co-pay for Imbruvica Other aspects of the BCBS plan are lousy but since Imbruvica retails...

I am on my employer's Blue Cross Blue Shield plan which has a zero co-pay for Im...

Hidden

•5 years ago

15 Replies

Obenetuzimab and Venetoclax

Imbrutinib no longer appears to be controlling my CLL. Have been on this drug since 2015. Dose was decreased because of side effects and increased in May to...

Imbrutinib no longer appears to be controlling my CLL. Have been on this drug s...

doris33

•5 years ago

7 Replies

Success stories above 70 with Ibrutinib

Hello lovely people, I have been writing here for a while about my mom's disease progress, and we are getting unfortunately closer to a treatment. Her WBC...

Hello lovely people, I have been writing here for a while about my mom's diseas...

paula_dae

•5 years ago

11 Replies

Need quick advice about going off ibrutinib for two weeks

My oncologist has requested I go off ibrutinib (420) for two weeks so he can see how I do and to determine if some side effects are from med. I’ve been on it...

My oncologist has requested I go off ibrutinib (420) for two weeks so he can see...

ElMaga

•5 years ago

6 Replies

Advice please, severe pain upper inner thigh - found a lump

I have had pain for months when I move the wrong way in the upper inner thigh area but brushed it off. Now the pain is intense and I found a lump. I’m I’m in...

I have had pain for months when I move the wrong way in the upper inner thigh ar...

Lucky0811

•5 years ago

22 Replies

Started Clinical trial-obinutuzumab+ venetoclax

Started 3 days ago. Included bendamustine due to lymph size. Day before treatment WBC at 173. After 2 treatments of bene. + obib. WBC at 17. Uric acid up...

Started 3 days ago. Included bendamustine due to lymph size. Day before treatm...

Elam

•5 years ago

9 Replies

Platelet drop

I am off Ibrutinib and veneclax for 4 mos and doing well except my platelets keep dropping with every appointment. Happen to anyone else? I was to have...

I am off Ibrutinib and veneclax for 4 mos and doing well except my platelets kee...

Ninagram

•5 years ago

5 Replies

Seed and soil: CLL cells and the mesenchymal stromal cells that keep them alive

Hi, CLL is easy to kill in the blood, but in the marrow and the lymph nodes, it has a huge network of support cells that helps keep it alive. Dr. Kay out of...

Hi, CLL is easy to kill in the blood, but in the marrow and the lymph nodes, it ...

bkoffman

CLL CURE Hero•5 years ago

5 Replies

Cll + HSP (Hereditary Spastic Paraparesis)

Looking for someone that has both of these. I am watch and wait since 2005 with CLL , HSP was first noticed in 2006.

Looking for someone that has both of these. I am watch and wait since 2005 with...

hspcll

•5 years ago

1 Reply

acalabrutinib gets Breakthrough Therapy Designation for CLL from FDA

https://www.astrazeneca.com/media-centre/press-releases/2019/calquence-granted-us-breakthrough-therapy-designation-for-chronic-lymphocytic-leukaemia-14082019.ht

https://www.astrazeneca.com/media-centre/press-releases/2019/calquence-granted-u...

avzuclav

•5 years ago

10 Replies

Nausea and Imbruvica

I have completed 6 weeks of Imbruvica. Has worked wonders on my sinus issues. My question for those of you on this medication is concerning the nausea. I am...

I have completed 6 weeks of Imbruvica. Has worked wonders on my sinus issues. ...

Sallybroadhurst

•5 years ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2019

Nutrition & lifestyle changes instead of just pills

Medicare payments

2nd Update on Possible Richters Transformation

Cll and prediabetes anyone?

ASH 2018: Dr. Chadi Nabhan on the Cost of Ibrutinib vs. Chemo vs Chemoimmunotherapy in CLL and on way too much chemo being used.

Factors Identified for Risk of Second Cancer in CLL Following BTK Inhibition

FCR and immunosuppression

venetoclax

Imbruvica

Calquence headache question

What about SLL.in Canada.....im in Ontario

CT scan results after 3 cycles BR

Probiotics with ibrutanib

Getting a Port tomorrow..Anything I should know or do?

Patient Reported Outcomes

Feedback on my new treatment options, what to do?

Marginal zone lymphoma Facebook support group

Acalabrutinib Achieved Breakthrough Designation for CLL

A Tool to Select Candidates for Allogeneic Hematopoietic Cell Transplant in CLL but do we need it?

Employer's insurance vs. Medicare for Imbruvica

Obenetuzimab and Venetoclax

Success stories above 70 with Ibrutinib

Need quick advice about going off ibrutinib for two weeks

Advice please, severe pain upper inner thigh - found a lump

Started Clinical trial-obinutuzumab+ venetoclax

Platelet drop

Seed and soil: CLL cells and the mesenchymal stromal cells that keep them alive

Cll + HSP (Hereditary Spastic Paraparesis)

acalabrutinib gets Breakthrough Therapy Designation for CLL from FDA

Nausea and Imbruvica

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