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CLL Support

22,532 members • 38,709 posts

All posts for May 2019

Which Antibiotic?

With all the different kinds of infections we all get, how do we get to be more versed on the many antibiotics that can be taken including the pluses and...

With all the different kinds of infections we all get, how do we get to be more ...

GrapeGrower1

•5 years ago

11 Replies

Mouth ulcers

Has anyone any good remedies for the most painful mouth ulcers ,they are driving me crazy 😢

Has anyone any good remedies for the most painful mouth ulcers ,they are driving...

Workers

•5 years ago

20 Replies

Platelets count 56000

Hi, I had a blood test last month and my platelets counts are very low (56000). However, other blood parameters are normal including RBC count, WBC count etc....

Hi, I had a blood test last month and my platelets counts are very low (56000)....

Chromatin

•5 years ago

4 Replies

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6 weeks since chemo.

Wanted to update. I am off treatment (BR) now 6 weeks and feeling quite good. Still foggy brained and need a nap some days. Wanted to thank everyone here for...

Wanted to update. I am off treatment (BR) now 6 weeks and feeling quite good. St...

Estate1

•5 years ago

4 Replies

Taking Imbruvica

Hi, my DR wants me to start Imbruvica but reading all of the side effects scares the crap out of me. The Pharmacist, literature and internet all say, i will...

Hi, my DR wants me to start Imbruvica but reading all of the side effects scares...

oso7672

•5 years ago

27 Replies

Travelling with CLL

Does anyone know if your a relapsed patient Of CLL and will be taking Ibrutinib or other drug is it possible to travel ?

Does anyone know if your a relapsed patient Of CLL and will be taking Ibrutinib ...

Kmegood

•5 years ago

40 Replies

URGENT: Painful lymph node in the back of the head

Hello Everyone, Mom is still on W&W, she has enlarged lymph nodes. She got one this morning in the back of her head (we are not sure it is a lymph node but...

Hello Everyone, Mom is still on W&W, she has enlarged lymph nodes. She got one ...

paula_dae

•5 years ago

13 Replies

Immunoglobulin levels improved at last (after 19 months on Ibrutinib)

After 19 months on Ibrutinib, I was delighted to hear that my immunoglobuins have improved. IgG and IgM are now within normal ranges, and IgA isn’t far off....

After 19 months on Ibrutinib, I was delighted to hear that my immunoglobuins hav...

PaulaS

Volunteer•5 years ago

42 Replies

FCR?

I'm concerned about whether my husband made the right decision when he was given the FCR arm of the Flair trial as over a number of weeks been mentioned that...

I'm concerned about whether my husband made the right decision when he was given...

very

•5 years ago

14 Replies

Cll/sll on watch & wait

Hi everyone am glad to be joining this forum. Was diagnosed about 8 months ago as i had cysts in my breast and a core biopsy revealed cll/sll. Obviously this...

Hi everyone am glad to be joining this forum. Was diagnosed about 8 months ago a...

Hidden

•5 years ago

4 Replies

Relationship between CLL and Carbamazepine (Tegretol)

Certain antiseizure (antiepileptic) medications, such as Carbamazepine (Tegretol), cause a lymphocytosis. Does anyone know of a relationship between this...

Certain antiseizure (antiepileptic) medications, such as Carbamazepine (Tegretol...

LovecuresCLL

•5 years ago

6 Replies

How is Lola doing right now?

I am having a problem with replying to specific individuals on this website. I try to direct my response to a specific individual. As soon as I hit reply to...

I am having a problem with replying to specific individuals on this website. I t...

leopardo

•5 years ago

1 Reply

Update #4 “ Treatment Begins. “

Hello All Sorry a few days late. I had my 3rd infusion on Friday. Got to Rutgers around 7:00 A.M. Labs, first the wait for results. No issues so let’s get...

Hello All Sorry a few days late. I had my 3rd infusion on Friday. Got to Rutger...

Coolerjoe

•5 years ago

14 Replies

Swooshing in my ears 2am

So for last week or 2 around 2am most mornings I’m awakened to a swooshing sound in my ears and then seems like my heart beat is coming through the...

So for last week or 2 around 2am most mornings I’m awakened to a swooshing sound...

haposwald

•5 years ago

16 Replies

FCR versus Ibrutinib

Hi everyone. I am new here and have posted a couple of times but have not introduced myself. I am 62, male, diagnosed with CLL in 2011. No deletions and...

Hi everyone. I am new here and have posted a couple of times but have not introd...

GrumpyFrog

•5 years ago

34 Replies

Starting Imbruvica

My DR wants me to start 1 pill @ 420 mg of Imbruvica but I'm concerned about the side effects. Should I start with that much or 3 pills? should I be...

My DR wants me to start 1 pill @ 420 mg of Imbruvica but I'm concerned about the...

oso7672

•5 years ago

10 Replies

Does Ibrutinib protect against severe reactions to amoxicillin/penicillin?

I’ve been taking Ibrutinib for about 5 years. About 15 years ago, I had what appeared to be an allergic reaction to amoxicillin when I experienced a bout of...

I’ve been taking Ibrutinib for about 5 years. About 15 years ago, I had what ap...

michaeledward

•5 years ago

10 Replies

buffalo77

for the first tme in 11 years im now feeling worried I also have painin my legs since I started ibtunib my first consultant said u don't get pain with...

for the first tme in 11 years im now feeling worried I also have painin my legs ...

rangers54

•5 years ago

9 Replies

Any patients here that were ever prescribed Imbruvica and did not start it?

We are looking to learn from patients what may have impacted not starting Imbruvica despite receiving a script. Look forward to hearing from anyone that had...

We are looking to learn from patients what may have impacted not starting Imbruv...

JustResearch

•5 years ago

1 Reply

CLL and related skin conditions

I am 73 and have had CLL for the last six years. I had FCR treatment some 5 years ago and more recently a milder form of FCR to keep the CLL at bay. One of the...

I am 73 and have had CLL for the last six years. I had FCR treatment some 5 year...

plett1234

•5 years ago

1 Reply

Bacteria may not be the only cause of tooth decay

Neutrophils may be implicated in tooth decay too...

Myrddin

•5 years ago

3 Replies

Update on Possible Richter Transformation

At the recommendation of one our members I called UPENN and asked to speak with a covering hematologist. I received a call fairly quickly, explained the...

At the recommendation of one our members I called UPENN and asked to speak with ...

ReneeSusan

•5 years ago

24 Replies

Ibrutnib

No. 4 years ago, I developed a bleeding problem while in ibrutinib and they were going to give me a different medicine. When they screened me for the new...

No. 4 years ago, I developed a bleeding problem while in ibrutinib and they were...

Pepper122

•5 years ago

3 Replies

CLL and sugar

I have had CLL ten years. After eating more food with sugar than usual during holidays, night sweats were horrible. After completely cutting refined sugar from...

I have had CLL ten years. After eating more food with sugar than usual during ho...

Lthgj

•5 years ago

11 Replies

Right decision? FCR vs. trial

Hi everyone I have been following and occasionally writing replies but have not introduced myself. This is a fantastic very supportive group and I am amazed...

Hi everyone I have been following and occasionally writing replies but have no...

schmitthj007

•5 years ago

42 Replies

Skin problems at the end of a clinical trial

My husband has three more days to go in a clinical trial with venetoclax and ibrutinib. We are travelling in the US, returning to Australia today. The...

My husband has three more days to go in a clinical trial with venetoclax and ibr...

photohound

•5 years ago

10 Replies

Skin problems at end of clinical trial

Hi all, and thanks for the advice that each of you provides online, it has been very helpful to my husband and !. I am hoping for advice about a problem my...

Hi all, and thanks for the advice that each of you provides online, it has been ...

photohound

•5 years ago

1 Reply

sinus infection and nose bleeds.

Hi everyone,I live in the UK and have no support whatsoever for my CLL,the DR at the hospital took bloods and just said "oh yes you have Leukaemia"that's it,I...

Hi everyone,I live in the UK and have no support whatsoever for my CLL,the DR at...

maggiewillow

•5 years ago

14 Replies

New user needing info

My dad was diagnosed about 5 years ago and has done the rituxan treatments and unfortunately it did it did not last as long as the dr expected it to .he has...

My dad was diagnosed about 5 years ago and has done the rituxan treatments and u...

MaleaElson

•5 years ago

6 Replies

CLL doesnt follow rules neither does Imbruvica

My husband Is in excellent physical condition and has CLL. He has been taking Imbruvica since it has been on the trial about 5 years since it’s been on...

My husband Is in excellent physical condition and has CLL. He has been taking Im...

Ruffycanoe44

•5 years ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2019

Which Antibiotic?

Mouth ulcers

Platelets count 56000

6 weeks since chemo.

Taking Imbruvica

Travelling with CLL

URGENT: Painful lymph node in the back of the head

Immunoglobulin levels improved at last (after 19 months on Ibrutinib)

FCR?

Cll/sll on watch & wait

Relationship between CLL and Carbamazepine (Tegretol)

How is Lola doing right now?

Update #4 “ Treatment Begins. “

Swooshing in my ears 2am

FCR versus Ibrutinib

Starting Imbruvica

Does Ibrutinib protect against severe reactions to amoxicillin/penicillin?

buffalo77

Any patients here that were ever prescribed Imbruvica and did not start it?

CLL and related skin conditions

Bacteria may not be the only cause of tooth decay

Update on Possible Richter Transformation

Ibrutnib

CLL and sugar

Right decision? FCR vs. trial

Skin problems at the end of a clinical trial

Skin problems at end of clinical trial

sinus infection and nose bleeds.

New user needing info

CLL doesnt follow rules neither does Imbruvica

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