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CLL Support

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All posts for July 2017

Ibrutinib & hair

Are there any side effects regarding hair? I've read about nails & muscle cramps. Trying to prepare myself before I start.

Are there any side effects regarding hair? I've read about nails & muscle cramp...

CoBubby

•7 years ago

32 Replies

Imbruvica treatment

I am Bixilon . Hi. First of all, excuse my English. I would like to know if there are people with imbruvic treatment in the first line having 17p. And how long...

I am Bixilon . Hi. First of all, excuse my English. I would like to know if ther...

Bixilon

•7 years ago

25 Replies

Autoimmune Hepititas

Can high liver enzymes are cause constipation. Constipated daily. Is my liver failing

Can high liver enzymes are cause constipation. Constipated daily. Is my liver fa...

Trumpbutt

•7 years ago

5 Replies

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High fever as side effect of Ibrutinib ?

Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which gave me 5 years of a nice remission. For the last 2 years I...

Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR...

GIDI

•7 years ago

8 Replies

Advice with starting FCR

After two years of wait and watch, I have to start treatment this week. Besides drinking lots of fluids what else do you recommend? What should I bring with...

After two years of wait and watch, I have to start treatment this week. Beside...

Jemisavs5

•7 years ago

26 Replies

CLL specialist

Would anyone know who the best CLL specialist in Melbourne would be?

DebLeeCox

•7 years ago

3 Replies

CLLSA meetings for rest of 2017

I mentioned in a recent reply to a post that I'd share the dates of the Oxford and London meetings in 2017. You will find the details on the CLLSA website:...

I mentioned in a recent reply to a post that I'd share the dates of the Oxford a...

Oleboyredw-uk

•7 years ago

1 Reply

Update No. 3

Hi Everyone Well hubby came home this afternoon, he certainly looks 'healthier' and is definitely more energetic.... The plan now us, for next 3 weeks x 2...

Hi Everyone Well hubby came home this afternoon, he certainly looks 'healthier' ...

Susiecarer

•7 years ago

3 Replies

Ibrutinib storage without A/C

Hello! Since live in Alabama without air conditioning, the inside temperature often exceeds the 77 degree F. maximum safe temperature range for Ibrutinib...

Hello! Since live in Alabama without air conditioning, the inside temperature of...

W00dfin

•7 years ago

4 Replies

VENETACLAX RESPONDERS - THANK YOU

I just wanted to say thank you so much to everyone who posted a response on my "down" day. The information received was really helpful and all the good wishes...

I just wanted to say thank you so much to everyone who posted a response on my "...

casanova

•7 years ago

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Update No. 2

HB readings after blood is 66, so 2 more bags will be given tonite. Platelet reading was 21,000 but dropped down to 17,000. Have taken him off his iron...

HB readings after blood is 66, so 2 more bags will be given tonite. Platelet rea...

Susiecarer

•7 years ago

4 Replies

Editing Dr. Sharman's special list of specialists.

Didn't know how to contact Dr. Sharman directly, but maybe someone in the community does. When on his CLL/NHL Doctors webpage -...

Didn't know how to contact Dr. Sharman directly, but maybe someone in the commun...

gemit2000

•7 years ago

4 Replies

South Florida resources??

CLL for a year, learning lots from this site, note the importance of seeing CLL specialist but there seems to be very few resources here in south Florida!...

CLL for a year, learning lots from this site, note the importance of seeing CLL ...

Kherl21

•7 years ago

10 Replies

Update

Morning all Well evan after the steroids, hubbys HB was still 5.6. Platelets were 90. They gave him 2 units of blood during the night, so we anxiously wait to...

Morning all Well evan after the steroids, hubbys HB was still 5.6. Platelets we...

Susiecarer

•7 years ago

2 Replies

Choices, choices!! FCR or Trial...?

So 8 years from diagnosis and a past year where I was no longer considering myself Superwoman who had inadvertently created the cure for the common cold...I've...

So 8 years from diagnosis and a past year where I was no longer considering myse...

AnjiP

•7 years ago

21 Replies

5 years on ibrutinib (IMBRUVICA)

Good news: http://drlaverne.blogspot.com/2017/07/my-5-year-anniversary-on-ibrutinib.html

Good news: http://drlaverne.blogspot.com/2017/07/my-5-year-anniversary-on-ibruti...

DrLV

•7 years ago

15 Replies

CLL & possible hyperparathyroidism

I've been happily (more or less) living with CLL since being diagnosed in 2005 just before my 36th birthday. I've been on watch and wait ever since, with no...

I've been happily (more or less) living with CLL since being diagnosed in 2005 j...

Vakraas

•7 years ago

13 Replies

Sam

I am 81 yo man live in Southern California. I have a rare type of nh lymphoma , called lymphoplasmocytic lymphoma, w/o macroglobulinemia. Two weeks ago I...

I am 81 yo man live in Southern California. I have a rare type of nh lymphoma , ...

Sam-1

•7 years ago

3 Replies

An answer at long last.....

Evening everyone..... Well NO OPERATION tomorrow.....taken into the Churchill and has been diagnosed with Evans Syndrome......which is another part of CLL !!!...

Evening everyone..... Well NO OPERATION tomorrow.....taken into the Churchill an...

Susiecarer

•7 years ago

12 Replies

Friends and Fans from around the World

I Thank all those for the messages of support at times they can make a huge difference. I am back home now just been watching the highlights of the Final day...

I Thank all those for the messages of support at times they can make a huge diff...

TheFlyer

•7 years ago

3 Replies

What is going on

Hubby had blood test done this morning at JR in preparation for his op tomorrow. Have just received a phone call saying that his HB level is 5.6 or 56...

Hubby had blood test done this morning at JR in preparation for his op tomorrow....

Susiecarer

•7 years ago

1 Reply

Seeking CLL specialist in SE UK for pre treatment consultation

Hi all, Well I have had my ankle fusion surgery and now am in the recovery phase so back to crutches and all that. But now I am turning my attention to the...

Hi all, Well I have had my ankle fusion surgery and now am in the recovery phase...

Redlion

•7 years ago

5 Replies

Ibrutinib, SNS-062, and CAR-NK

Hi, It’s been a bit crazy, but I wanted to share that I have posted on our nonprofit’s website http://cllsociety.org an interview from ASH about the...

Hi, It’s been a bit crazy, but I wanted to share that I have posted on our nonpr...

bkoffman

CLL CURE Hero•7 years ago

3 Replies

Brain Hematomas

Has anyone experienced recurring brain hematomas with their CLL and if so what are you trying to do to prevent them?

Has anyone experienced recurring brain hematomas with their CLL and if so what a...

Paolob

•7 years ago

4 Replies

FCR

Hello everyone! I am just finishing the 2nd cycle of FCR for my CLL diagnosed 2011. Must say it's not been at all bad ... so far anyway. No sickness at all but...

Hello everyone! I am just finishing the 2nd cycle of FCR for my CLL diagnosed 20...

bendintheroad1

•7 years ago

2 Replies

Flu vaccination delivery option updates

I don't think anyone enjoys being jabbed in the arm, so here's some encouraging news on flu vaccination alternatives... Flu Vax via Microneedle...

I don't think anyone enjoys being jabbed in the arm, so here's some encouraging ...

AussieNeil

Administrator•7 years ago

1 Reply

Recent Leicester CLLSA Conference

To the organisers - many thanks for an excellent day. Lovely facilities with ample, nutritious and satisfying refreshments kept us sustained all day. Excellent...

To the organisers - many thanks for an excellent day. Lovely facilities with amp...

thelutondodger

•7 years ago

15 Replies

In pain..

Have CLL, stage 2 intermediate stage.. had recently PET Ct scan done, all organs fine, my Oncologist Dr, told me through out my body I have Lymphoma, right...

Have CLL, stage 2 intermediate stage.. had recently PET Ct scan done, all organs...

Hidden

•7 years ago

11 Replies

Migratory joint pain.

I have had fe and scattered episodes of migratory joking ain and sw long. Right now it is the lateral aspect of my right wrist, on the iulnar sidev 😢 I was...

I have had fe and scattered episodes of migratory joking ain and sw long. Right...

usapajgy

•7 years ago

3 Replies

Not sure what's going on

Morning everyone Hubby had his transfusion on the 18th July, he was given 2 units instead of the 3 possibly 4 as first told. He says he feels better i.e. able...

Morning everyone Hubby had his transfusion on the 18th July, he was given 2 unit...

Susiecarer

•7 years ago

9 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2017

Ibrutinib & hair

Imbruvica treatment

Autoimmune Hepititas

High fever as side effect of Ibrutinib ?

Advice with starting FCR

CLL specialist

CLLSA meetings for rest of 2017

Update No. 3

Ibrutinib storage without A/C

VENETACLAX RESPONDERS - THANK YOU

Update No. 2

Editing Dr. Sharman's special list of specialists.

South Florida resources??

Update

Choices, choices!! FCR or Trial...?

5 years on ibrutinib (IMBRUVICA)

CLL & possible hyperparathyroidism

Sam

An answer at long last.....

Friends and Fans from around the World

What is going on

Seeking CLL specialist in SE UK for pre treatment consultation

Ibrutinib, SNS-062, and CAR-NK

Brain Hematomas

FCR

Flu vaccination delivery option updates

Recent Leicester CLLSA Conference

In pain..

Migratory joint pain.

Not sure what's going on

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