Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for April 2019

Not “sick” enough for an IVIG treatment...

Hello Friends, I haven’t posted in quite a while. I have had ongoing sinus and kidney infections since October 2018. I’m limited with types of antibiotics...

Hello Friends, I haven’t posted in quite a while. I have had ongoing sinus and k...

teb0513

•5 years ago

14 Replies

IGG infusions

I am new to CLL and heard about IGG infusions through a friend. Can anyone give me more info about these? Has anyone tried this? Thank you and have a blessed...

I am new to CLL and heard about IGG infusions through a friend. Can anyone give ...

Rivergoddess

•5 years ago

8 Replies

Eye conditions

Has anyone had issues with runny tearing eyes? I have tried OTC drops for dry eye, have been prescribed an antibiotic, which I used two repeats on the...

Has anyone had issues with runny tearing eyes? I have tried OTC drops for dry e...

Hidden

•5 years ago

33 Replies

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Need your help on out of pocket cost for treatment plus to say hi to everyone

Hello all. This is my first posting, but I have been following the daily updates and I am very thankful that there is a forum where I can possibly get answers....

Hello all. This is my first posting, but I have been following the daily updates...

Bowie1957

•5 years ago

11 Replies

Ibrutinib and Prednisolone

Hi all, Yesterday (Saturday) I was prescribed Doxycycline and Prednisolone, the second year I have had to have 3 doses of antibiotics for a stubborn chest...

Hi all, Yesterday (Saturday) I was prescribed Doxycycline and Prednisolone, the ...

Mikey47

•5 years ago

5 Replies

How can I get acalabrutinib?

Hello everyone. I see my CLL expert on Monday and believe that he will finally be suggesting treatment after 12 years on watch and wait. I’m mutated and have...

Hello everyone. I see my CLL expert on Monday and believe that he will finally ...

ttomo

•5 years ago

12 Replies

Ibrutinib concerns

I have been following so many posts about Ibrutinib before I take this drug next week & I want to thank everyone for their contributions which are so helpful &...

I have been following so many posts about Ibrutinib before I take this drug next...

Benny12

•5 years ago

23 Replies

EPO Drug for CLL

I now see a lot of news about athletes using EPO drug to enhance performance. Question is why is this not used to overcome symptoms of CLL, such as fatigue,...

I now see a lot of news about athletes using EPO drug to enhance performance. ...

Hidden

•5 years ago

8 Replies

imbruvica/gazyva or imbruvica/venclexta

I am b-pll. i am p17 deletion and p53 mutated. I get treated like advanced CLL because there are so few b-pll patients not enough to get drug indications...

I am b-pll. i am p17 deletion and p53 mutated. I get treated like advanced CLL ...

Hidden

•5 years ago

29 Replies

Staph infections and antibiotics

I was diagnised with CLL in NI’ve. 2018 and have been doing okay until now. I got a very uncomfortable staph infection and was put in Cephalexun (Keflex) 2...

I was diagnised with CLL in NI’ve. 2018 and have been doing okay until now. I go...

Rivergoddess

•5 years ago

4 Replies

Subcutaneous Immune globulin infusion therapy?

Is anyone getting Subcutaneous Immune globulin infusion therapy? I am trying to find alternative to receive IV therapy in the hospital. If yes what is the...

Is anyone getting Subcutaneous Immune globulin infusion therapy? I am trying to ...

pragnar

•5 years ago

4 Replies

dose of ibutrinib

Hi, just started with 280 mg of ibutrinib, anyone with similar experience? Is is effective?

Hi, just started with 280 mg of ibutrinib, anyone with similar experience? Is is...

Fight-1964

•5 years ago

2 Replies

CLL Society NYC Support Group Meeting Changed to Saturday May 18th ------ - Drs. Allan, Furman, Koffman, Lamanna and Mato will be presenting

Our May CLL Society NYC Support Group meeting schedule has changed, due to May 12 being Mother's Day we won't meet then. Instead we encourage your...

Our May CLL Society NYC Support Group meeting schedule has changed, due to May 1...

lankisterguy

Volunteer•5 years ago

1 Reply

Gamma globulin infusion cost in USA?

Hi I just got a bill from my doctor for gamma globulin infusion. The cost is 10, 288 USA dollars. Is this a normal cost? Could you tell me what are other...

Hi I just got a bill from my doctor for gamma globulin infusion. The cost is 10,...

pragnar

•5 years ago

15 Replies

Specialists

Ok guys I need recommendations for a CLL specialist in the state of Ga or close around that area. I live in South Ga. USA Thanks guys, Deana

Ok guys I need recommendations for a CLL specialist in the state of Ga or close ...

DRADCLIFF

•5 years ago

16 Replies

Infection risk and SLL

The recent post on infection risk has me wondering: Having SLL my bloodwork is all normal. Are we with SLL at risk of infection the same way others with CLL...

The recent post on infection risk has me wondering: Having SLL my bloodwork is...

Jemorgen

•5 years ago

43 Replies

Need to know about any DSide Effects when on Venetalax/ rituximab

Hi Everyone. Seems I have the P53 gene deletion. I will be commencing on a regime of Venetaclax/ rituximab in late may- will be monitored for 3 days each week...

Hi Everyone. Seems I have the P53 gene deletion. I will be commencing on a regim...

roszika

•5 years ago

3 Replies

ASA

I have been taking 81mg enteric aspirin for years. My doctor and pharmacist said it was Ok to take while on Ibrutinib. Is anyone else taking aspirin?

I have been taking 81mg enteric aspirin for years. My doctor and pharmacist said...

country76

•5 years ago

15 Replies

LDN

Doe anybody have experience or knowledge about LDN (Low Dose Naltrexone) My personal Dr suggested that I look into this as a way of building up my immune...

Doe anybody have experience or knowledge about LDN (Low Dose Naltrexone) My pers...

kramnitus

•5 years ago

53 Replies

Chemo

Would be interested in hearing about people’s experience of chemo in UK especially over 80s as my mum may be offered treatment

Would be interested in hearing about people’s experience of chemo in UK especial...

Dazt

•5 years ago

1 Reply

MD Anderson Houston

Can anyone suggest doctors there for cll specialist

showdog

•5 years ago

43 Replies

CAR T versus Stem Cell transplant for Richter's

Has anyone used CAR T or stem cell transplant for advanced CLL or Richter's?

profrich

•5 years ago

1 Reply

Postponed treatment

I have only recently joined this site, and already, I am finding it quite helpful and reassuring. I was diagnosed with CLL/SLL in January and started...

I have only recently joined this site, and already, I am finding it quite helpfu...

Youngpriest

•5 years ago

2 Replies

Been awhile!

USA: 2014 - present 2014: Spleen upper limits of normal; Liver mild enlargement; shotty lymph nodes at axillary and mediastinal; multiple renal cyst seen...

USA: 2014 - present 2014: Spleen upper limits of normal; Liver mild enlargement;...

tedrog

•5 years ago

4 Replies

Lymphedema and CLL

Has anyone with a diagnosis of CLL had/have lymphedema?

luvemwildcats

•5 years ago

5 Replies

Extranodal Lymphoma

Having just read about one of our members succumbing to an infection following treatment for CLL/SLL manifesting in the person's eyes made me wonder about...

Having just read about one of our members succumbing to an infection following t...

livinglifewell

•5 years ago

10 Replies

Should "Remission" be accompanied by a Health Warning?

I have been trying to understand why, after being in remission for nine months, I am confused and disappointed with my progress. I expected to recover what I...

I have been trying to understand why, after being in remission for nine months, ...

Hidden

•5 years ago

22 Replies

Multiple cancer drugs on medicare part d

Hi; just a question. Is anybody getting more than one drug for cll at the same time on medicare part d. say like imbruvica and ventolax. if you are did...

Hi; just a question. Is anybody getting more than one drug for cll at the same ...

Hidden

•5 years ago

11 Replies

Ibrutinib advice please

As a CLL patient I am now going to start Ibrutinib next week & have been told I will be prescribed Aciclovir as well. I was prescribed this short term when I...

As a CLL patient I am now going to start Ibrutinib next week & have been told I...

Benny12

•5 years ago

29 Replies

Chronic Fatigue Syndrome

Hi, from New Zealand. I have been CLL diagnosed for 2years +--No treatment but am not handling the Chronic fatigue at all well . ANY suggestions please !!!....

Hi, from New Zealand. I have been CLL diagnosed for 2years +--No treatment but ...

barbkay17

•5 years ago

26 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2019

Not “sick” enough for an IVIG treatment...

IGG infusions

Eye conditions

Need your help on out of pocket cost for treatment plus to say hi to everyone

Ibrutinib and Prednisolone

How can I get acalabrutinib?

Ibrutinib concerns

EPO Drug for CLL

imbruvica/gazyva or imbruvica/venclexta

Staph infections and antibiotics

Subcutaneous Immune globulin infusion therapy?

dose of ibutrinib

CLL Society NYC Support Group Meeting Changed to Saturday May 18th ------ - Drs. Allan, Furman, Koffman, Lamanna and Mato will be presenting

Gamma globulin infusion cost in USA?

Specialists

Infection risk and SLL

Need to know about any DSide Effects when on Venetalax/ rituximab

ASA

LDN

Chemo

MD Anderson Houston

CAR T versus Stem Cell transplant for Richter's

Postponed treatment

Been awhile!

Lymphedema and CLL

Extranodal Lymphoma

Should "Remission" be accompanied by a Health Warning?

Multiple cancer drugs on medicare part d

Ibrutinib advice please

Chronic Fatigue Syndrome

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