Posts - CLL Support | HealthUnlocked

CLL Support

23,254 members•39,951 posts

All posts for September 2018

Any positive transplant stories 60+?

I've got a CLL buddy who has just been diagnosed with myelodysplastic syndrome, which is basically bone marrow failure. I'm not clear if this is...

I've got a CLL buddy who has just been diagnosed with myelodysplastic syndrome, ...

Eagle5327

•6 years ago

9 Replies

Running to support CLLSA

Tony Childs will be running the Brighton 10k to raise funds in support of CLLSA. His friend Paul Hatfield's wife has been diagnosed with CLL and he would...

Tony Childs will be running the Brighton 10k to raise funds in support of CLLSA....

pkguk2

Partner•6 years ago

1 Reply

My hubbys update on cll

Hello everyone have not been on for a bit my husband is w&w has been for 7 yrs still went to heamotology recently and his white cell count has drop by 3...

Hello everyone have not been on for a bit my husband is w&w has been for 7 yrs s...

Nikkij81

•6 years ago

4 Replies

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Ibrutinib

My husband’s side effects are worse late afternoon early evening. I stay awake until I am sure he is more settled. He has horrible chills. He’s beginning to...

My husband’s side effects are worse late afternoon early evening. I stay awake u...

Zappymom12

•6 years ago

14 Replies

Newbie

Howdy. Pretty cool site with a lot of info, suggestions. I’m 63, finished FCR in November 2015, just started ibrutinib week ago last Saturday. Lot of side...

Howdy. Pretty cool site with a lot of info, suggestions. I’m 63, finished FCR...

gesch83ag

•6 years ago

3 Replies

Kansas City Area Support Group

Good morning All: I have been working with Patricia Koffman, Executive Director CLL Society to try to start a CLL Support group in Kansas City Area. There...

Good morning All: I have been working with Patricia Koffman, Executive Director ...

BlueGillfisherman

•6 years ago

8 Replies

Post 4 cycles FCR side effects

FCR vasculitis & fungal pneumonia after 4 cycle

Mathild

•6 years ago

7 Replies

Lab Results after 3 mos.

Good Morning. I am on every 3 mos of blood work. Just got the results back. I just need to know that blood work looks okay? After reading here and getting...

Good Morning. I am on every 3 mos of blood work. Just got the results back. I ju...

honey1969

•6 years ago

12 Replies

Terrible pain in my joints

I have been on Ibrutinub for 13 months and have terrible cramping in my hips and back. Anyone else experience this sort of thing on this drug?

I have been on Ibrutinub for 13 months and have terrible cramping in my hips and...

Jms19

•6 years ago

13 Replies

Muting a member in Private Messages/Chat

HealthUnlocked have just released a new feature - the ability to mute a member from contacting you directly via private message, which they describe below:...

HealthUnlocked have just released a new feature - the ability to mute a member f...

AussieNeil

Administrator•6 years ago

11 Replies

Bloodwise Birmingham Impact Day 15 Sep 2018 - not CLL specific

Recording of Bloodwise Birmingham Impact Day - starts about 20min-1:41 resumes about 2:36 https://www.youtube.com/watch?v=Brij_q6DXa8 Interesting presentations...

Recording of Bloodwise Birmingham Impact Day - starts about 20min-1:41 resumes a...

Myrddin

•6 years ago

2 Replies

Ibrutinib resistance

Anybody taking ibrutinib for over 3 years? It seems that resistance if develop (still unclear how many people do develop resistance) may start approximately at...

Anybody taking ibrutinib for over 3 years? It seems that resistance if develop (...

Hidden

•6 years ago

13 Replies

Fcr update

It’s now two weeks since my first session of chemo. On day four I felt exhausted and really nauseous so slept on and off most of the day,day five I managed to...

It’s now two weeks since my first session of chemo. On day four I felt exhausted...

dandelup

•6 years ago

7 Replies

I think this should be my last post

Dear Friends. I have been looking back over my postings on here and have tried to compare what my journey has been like in comparison to others,And I have come...

Dear Friends. I have been looking back over my postings on here and have tried t...

saintjohn

•6 years ago

36 Replies

Cheap Ibrutinib?

Hi Everyone, I started doing research on treatments and how I can handle the cost, since our insurance does not cover anything. We are doing the bone marrow...

Hi Everyone, I started doing research on treatments and how I can handle the co...

paula_dae

•6 years ago

52 Replies

Maintenance therapy??

Hi - I have completed 4 rounds of BR and the 5th one has been postponed due to low neutrophils. The neutrophils are still low, after 9 weeks, and the doctor is...

Hi - I have completed 4 rounds of BR and the 5th one has been postponed due to l...

Victoria666

•6 years ago

4 Replies

Not to be morbid but....

just found out that I am comorbid. Few weeks ago I took a Coronary Artery Calcium Score test & got some morbid (and shocking) results. Now to further test my...

just found out that I am comorbid. Few weeks ago I took a Coronary Artery Calciu...

gemit2000

•6 years ago

7 Replies

Modified venetoclax ramp up

Has anyone been put on a modified (rapid ramp up) venetoclax plan? Edit: My Dad has completed the first full week on 20mg but will now cut the 50mg week short...

Has anyone been put on a modified (rapid ramp up) venetoclax plan? Edit: My Dad ...

jaye0

•6 years ago

9 Replies

Town Meeting | Understanding CLL: What You Should Know About Treatment, Genetic Testing and Research from Patient Power (USA)

https://www.patientpower.info/index.cfm?objectid=91B931D0-B775-11E8-99CD000D3A30C4F8 Join Us for Our Latest CLL Event Next Saturday CLL Atlanta Town Meeting |...

https://www.patientpower.info/index.cfm?objectid=91B931D0-B775-11E8-99CD000D3A30...

lankisterguy

Volunteer•6 years ago

1 Reply

Ibrutinib linked to invasive fungal infections

In the past Idelalisib (Zydelig) was found to increase the risk of Pneumocystis in previously untreated patients. Now Ibrutinib has also been linked,...

In the past Idelalisib (Zydelig) was found to increase the risk of Pneumocystis ...

lankisterguy

Volunteer•6 years ago

2 Replies

What are CBC/Dif Most Important Numbers?

I want to graph my weekly test results now that I'm in a trial. My knowledge has been growing over my five years of watch and wait, and I don't yet know quite...

I want to graph my weekly test results now that I'm in a trial. My knowledge has...

Lily_Pad_Master

•6 years ago

6 Replies

Irish Cancer society Living Well With Cancer Conference in Galway and CLL Ireland will be there.

If you haven't already, be sure to register online for free to attend this year's Living Well with Cancer Conference coming to Galway on Saturday, 15...

If you haven't already, be sure to register online for free to attend this year'...

Irishcll

•6 years ago

2 Replies

Anyone have swelling of feet? Is this a side effect of Imbruvica? I’ve been taking this for a little more than 2 years.

I was diagnosed 18 years ago. Went through the watch and wait for 15 years then I was diagnosed with stage 1 breast cancer hr2+ I was treated with taxol &...

I was diagnosed 18 years ago. Went through the watch and wait for 15 years then ...

Read-

•6 years ago

4 Replies

Travel Insurance to overseas from Australia ( I am new here)

I am new here , however have been reading posts for some time. Which are the most suitable companies in Australia that give overseas travel insurance for...

I am new here , however have been reading posts for some time. Which are the mos...

oztrader

•6 years ago

2 Replies

Technical terms I am unfamiliar with

In my original diagnostic testing of 2013, it states, " Somatic hypermutation analysis showed two clonal populations with one of which was VH1-3 which was...

In my original diagnostic testing of 2013, it states, " Somatic hypermutation an...

markjeep51

•6 years ago

12 Replies

Hair loss pre treatment

Hello everyone Could CLL be responsible for hair loss ? (Not talking about chemo or any treatment)

Hello everyone Could CLL be responsible for hair loss ? (Not talking about chemo...

Sergi

•6 years ago

12 Replies

CMV AB reactive?

Hi Again, Mom has strong headache and swollen nodes all around her neck and under the chin. Her CMV AB IGG test came reactive 33.7, we are seeing her doctor...

Hi Again, Mom has strong headache and swollen nodes all around her neck and und...

paula_dae

•6 years ago

3 Replies

SLL Lymphocytes

Hello, In SLL it sounds like the absolute lymphocyte count tends to stay below 5000. Since we cannot rely on lymphocyte doubling time used in CLL do we focus...

Hello, In SLL it sounds like the absolute lymphocyte count tends to stay below 5...

DriedSeaweed

•6 years ago

4 Replies

Lactic acid

Hey can anyone tell me what does it mean to have high lactic acid levels. Mine was 2.8 but now is down to 1 after IV fluid but the doctor didn’t give me any...

Hey can anyone tell me what does it mean to have high lactic acid levels. Mine w...

Jones567

•6 years ago

3 Replies

Do I go on a trial or not

Hi all I have only posted a few times but I do follow the posts everyday,most helpfull.my question is as the title says,I very confused aso which way to go...

Hi all I have only posted a few times but I do follow the posts everyday,most he...

d3dan

•6 years ago

51 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2018

Any positive transplant stories 60+?

Running to support CLLSA

My hubbys update on cll

Ibrutinib

Newbie

Kansas City Area Support Group

Post 4 cycles FCR side effects

Lab Results after 3 mos.

Terrible pain in my joints

Muting a member in Private Messages/Chat

Bloodwise Birmingham Impact Day 15 Sep 2018 - not CLL specific

Ibrutinib resistance

Fcr update

I think this should be my last post

Cheap Ibrutinib?

Maintenance therapy??

Not to be morbid but....

Modified venetoclax ramp up

Town Meeting | Understanding CLL: What You Should Know About Treatment, Genetic Testing and Research from Patient Power (USA)

Ibrutinib linked to invasive fungal infections

What are CBC/Dif Most Important Numbers?

Irish Cancer society Living Well With Cancer Conference in Galway and CLL Ireland will be there.

Anyone have swelling of feet? Is this a side effect of Imbruvica? I’ve been taking this for a little more than 2 years.

Travel Insurance to overseas from Australia ( I am new here)

Technical terms I am unfamiliar with

Hair loss pre treatment

CMV AB reactive?

SLL Lymphocytes

Lactic acid

Do I go on a trial or not

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