Posts - CLL Support | HealthUnlocked

CLL Support

23,337 members•40,046 posts

All posts for September 2017

Stress and CLL

Disgoned with CLL in Jan 2016, every 6 months doc said normal progression counts up about 5,000 each visit. Had visit in Feb counts at 22 . Then in May came...

Disgoned with CLL in Jan 2016, every 6 months doc said normal progression count...

aremmick

•7 years ago

28 Replies

MRD Negative in the blood and CR on MRI after 9 months from Imbruvica plus Venetoclax Clinical trial. So far so good...

Hello, I am please to announce that after my 9th cycle on the Imbruvica plus Venetoclax trial I am Min Residual Disease (MRD) Negative in the blood and...

Hello, I am please to announce that after my 9th cycle on the Imbruvica plus Ven...

Hoffy

•7 years ago

40 Replies

Recently diagnosed SLL and wonder about brain involvement?

I have just been diagnosed with SLL - Stage lll and will start chemo in October. Apparently I have had it for years without knowing as bloodwork was, and...

I have just been diagnosed with SLL - Stage lll and will start chemo in October...

Marie-54

•7 years ago

7 Replies

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Ibrutinib

I am new to this site.Over the years, since I was first diagnosed with CLL, I have had two treatments with chemo, this time I was put on Ibrutinib. I suffered...

I am new to this site.Over the years, since I was first diagnosed with CLL, I ha...

Cardiffborn

•7 years ago

1 Reply

Lymphoma may have returned already?

I finished taking a full round of Gazyva last December after being diagnosed in June. I had no previous warning until night sweats and fevers hit last spring...

I finished taking a full round of Gazyva last December after being diagnosed in ...

skinkade

•7 years ago

8 Replies

CLL and my story i was told i had CLL and HepC and would be on wait and watch and i could start hepc treatment right away.

Hepc treatment was a success and for a year and a half hepc treatment pushed cancer back to normal.Then my wbc started moving slowly. my white count is 15000...

Hepc treatment was a success and for a year and a half hepc treatment pushed can...

eprig7702

•7 years ago

4 Replies

Tired

I was diagnosed with CLL about two years ago. I really do not have any outward symptoms but I am usually always tired. Any suggestions

I was diagnosed with CLL about two years ago. I really do not have any outward s...

BlueGillfisherman

•7 years ago

26 Replies

Night sweats during the day

Hi, I'm 66 diagnosed, 6 years ago, bloods are still pretty good, some slight swelling in lymph glands but over past month I've started to sweat profusely...

Hi, I'm 66 diagnosed, 6 years ago, bloods are still pretty good, some slight sw...

is-sul

•7 years ago

17 Replies

Weight loss and muscle loss due to CLL

I have been diagnosed 8 months ago and stared treatment after 7 months of W$W, feel OK, but lost muscle tone due to my appetite loss. Any suggestions about My...

I have been diagnosed 8 months ago and stared treatment after 7 months of W$W, f...

Clayton348

•7 years ago

6 Replies

High biotin doses may interfere with some SERUM blood tests, e.g. thyroid, anaemia. Those on Ibrutinib please note!

Those taking biotin PLEASE take note! Biotin (vitamin B7) is a common component of immunoassays (a technique for measuring blood serum levels) and a...

Those taking biotin PLEASE take note! Biotin (vitamin B7) is a common component...

AussieNeil

Administrator•7 years ago

27 Replies

Flu vaccine suitable for CLL WW with egg allergy

Hi folks, Could anyone recommend a flu vaccine for me (available in U.K.) I'm on wait and watch for 4 years as I have a egg allergy so can't have the...

Hi folks, Could anyone recommend a flu vaccine for me (available in U.K.) I'm o...

sue2412

•7 years ago

26 Replies

CCL

My mother-in-law is 88 and has just been diagnosed with CCL-she has a range of symptoms-night sweats,breathlessness,weight loss. We are seeing the consultant...

My mother-in-law is 88 and has just been diagnosed with CCL-she has a range of s...

jp88

•7 years ago

2 Replies

Weakness in legs and feet.

I've posted a few times about being diagnosed 21/2 yrs ago will cll and now after a biopsy sll. I have many of the problems I read on post but wondered if...

I've posted a few times about being diagnosed 21/2 yrs ago will cll and now afte...

wiggles123

•7 years ago

5 Replies

Hi everyone,

My name is Sarah my lovely 61 year old dad is going for his first FCR treatment for CLL on Monday am. I thought I'd write to see if any one had any...

My name is Sarah my lovely 61 year old dad is going for his first FCR treatment ...

Whitehouse_77

•7 years ago

13 Replies

New and would love advice

Good morning! I was diagnosed with CLL 14 months ago. I am a 52 yr old woman and was seemingly healthy except I was beyond exhausted all of the time, thus...

Good morning! I was diagnosed with CLL 14 months ago. I am a 52 yr old woman a...

Jeanne65

•7 years ago

6 Replies

Rashes with Ibrutinib use

My 65 year old husband has CLL with p53/17 deletions. He has been on Ibrutinib for almost 3 weeks now. He takes 2 pills at night. His strength has returned....

My 65 year old husband has CLL with p53/17 deletions. He has been on Ibrutinib f...

Farrpottery

•7 years ago

10 Replies

Start of treatment.

Hi everyone, I have not been on this post in a long time. My Dr. wanted to start treatment on me two months ago. I told him I was getting a second opinion....

Hi everyone, I have not been on this post in a long time. My Dr. wanted to sta...

hmo1

•7 years ago

1 Reply

NHL possibly from using Roundup

It was almost a year of complaining of being excessively tired before there was a diagnosis - extremely frustrating. Then two chemo meds had no effect. I...

It was almost a year of complaining of being excessively tired before there was ...

PAgrandmom

•7 years ago

17 Replies

Fatigue while in remission

I'm sure this subject has been amply treated on this site, but I haven't seen a lot of posts on my specific question, so here goes. I'm a 69-year-old female,...

I'm sure this subject has been amply treated on this site, but I haven't seen a ...

Ducksoup

•7 years ago

6 Replies

Neutropenia

So I told my hubby about the diet for neutropenia and the first thing we changed is yogurt 🍦 he is still nauseous but definately not as bad. Every little bit...

So I told my hubby about the diet for neutropenia and the first thing we changed...

Hidden

•7 years ago

3 Replies

Psoriasis with Imbruvica and CLL

I've been on imbruvica for 6 months, experiencing most all the major side effects, including the rash from head to toes. That is now long gone. However, this...

I've been on imbruvica for 6 months, experiencing most all the major side effect...

Hidden

•7 years ago

6 Replies

Questions about stopping Imbruvica due to infection

Hi, my husband is a stage 4, SLL/CLL survivor, he was first diagnosed as a healthy 49 year old man and after 6 months completed 6 grueling rounds of FCR which...

Hi, my husband is a stage 4, SLL/CLL survivor, he was first diagnosed as a healt...

bellasmom

•7 years ago

9 Replies

Moffitt Cancer Center Tampa reliable??

Does anyone know why it is never listed (as far as I can tell) in the list of good doctors? Hubby was given to Dr. Julio Chavez. I feel because he is the new...

Does anyone know why it is never listed (as far as I can tell) in the list of go...

Spacee

•7 years ago

26 Replies

Leukaemia conference North East England . feedback

Hi everyone, just a bit of feedback from a leukaemia conference i attended yesterday in the North East of England. The conference covered many leukaemia's...

Hi everyone, just a bit of feedback from a leukaemia conference i attended yeste...

annmcgowan

•7 years ago

4 Replies

Checking in after a while

Hello everyone, It's been a while since I posted. 2 years since diagnosis and just avoding doctors. Funny thing is I have not Been sick very much since...

Hello everyone, It's been a while since I posted. 2 years since diagnosis and j...

CCLandwell

•7 years ago

1 Reply

After the up comes the down

It seems that whenever I have good news, bad is soon to follow. I had a wart like lump on my arm which appeared around 6 years ago but was told it was an age...

It seems that whenever I have good news, bad is soon to follow. I had a wart lik...

KAS8

•7 years ago

13 Replies

Thanks for the response

I did my first, new to this, and so nice to hear from every one. Like I said, new to cll, haven't even seen the blood doc yet. Not till next Thursday. I'm...

I did my first, new to this, and so nice to hear from every one. Like I said, n...

flugel1

•7 years ago

5 Replies

New "kid" on the therapy block

No direct experience with ADCT-402 but never short on being curious and sharing uncredentialed opinion. For those who have not previously heard of ADCT-402 it...

No direct experience with ADCT-402 but never short on being curious and sharing ...

ThreeWs

•7 years ago

5 Replies

CLL Doctor in FL

I was just diagnosed with CLL last year. I am 43 now. Does anyone know of a doctor who specializes in CLL in Florida?

I was just diagnosed with CLL last year. I am 43 now. Does anyone know of a do...

DaleFL

•7 years ago

17 Replies

NCCN releases 2018 CLL treatment guide

This new publication (72 pages) may be of interest to the CLL community. Thirty of the top CLL doctors contributed to the publication....

This new publication (72 pages) may be of interest to the CLL community. Thirt...

uihwki

•7 years ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for September 2017

Stress and CLL

MRD Negative in the blood and CR on MRI after 9 months from Imbruvica plus Venetoclax Clinical trial. So far so good...

Recently diagnosed SLL and wonder about brain involvement?

Ibrutinib

Lymphoma may have returned already?

CLL and my story i was told i had CLL and HepC and would be on wait and watch and i could start hepc treatment right away.

Tired

Night sweats during the day

Weight loss and muscle loss due to CLL

High biotin doses may interfere with some SERUM blood tests, e.g. thyroid, anaemia. Those on Ibrutinib please note!

Flu vaccine suitable for CLL WW with egg allergy

CCL

Weakness in legs and feet.

Hi everyone,

New and would love advice

Rashes with Ibrutinib use

Start of treatment.

NHL possibly from using Roundup

Fatigue while in remission

Neutropenia

Psoriasis with Imbruvica and CLL

Questions about stopping Imbruvica due to infection

Moffitt Cancer Center Tampa reliable??

Leukaemia conference North East England . feedback

Checking in after a while

After the up comes the down

Thanks for the response

New "kid" on the therapy block

CLL Doctor in FL

NCCN releases 2018 CLL treatment guide

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