Posts - CLL Support | HealthUnlocked

CLL Support

22,474 members • 38,608 posts

All posts for April 2019

Intro

Hello everyone! I have been reading your posts and have so much appreciation for what I have learned. I was diagnosed with atypical cll in 2007 and started...

Hello everyone! I have been reading your posts and have so much appreciation for...

Virgo10

•5 years ago

16 Replies

Wait& watch with Cll

My mom,75yrs of age was detected with Cll In 2012. All was fine until last 15 days,when her wbc count went up to 1.5 lacks and 95% mature looking...

My mom,75yrs of age was detected with Cll In 2012. All was fine until last 15 da...

guptasanjay285

•5 years ago

11 Replies

In memory of Chris

I have been looking through the posts on HU and I just decided to post one of lovely pics here. I miss you Chris. (This is one of his photos)

I have been looking through the posts on HU and I just decided to post one of lo...

Flabal

•5 years ago

15 Replies

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IGVH Hypermutation test.

I went to a CLL specialist and they did IGVH testing. An email informed that I had a new test before the doctor actually called me. I think it is saying that...

I went to a CLL specialist and they did IGVH testing. An email informed that I ...

Camaroman

•5 years ago

14 Replies

allopurinol

Larryt1234

•5 years ago

3 Replies

Terrible rash. Any advice?

Full of questions. Sat. night I felt a bit itchy and by last night I was covered in a huge rash, skin feels hot and itchy , body feels chilled, temp. 98.6, but...

Full of questions. Sat. night I felt a bit itchy and by last night I was covered...

Rivergoddess

•5 years ago

12 Replies

Should we be worried about measles?

Should we be updating our measles vaccinations?

CCLandwell

•5 years ago

17 Replies

Southampton Area United Kingdom

Hi there, If anyone is in the local area of Southampton United Kingdom the following is a new group being set up in Southampton by the Haematology Department...

Hi there, If anyone is in the local area of Southampton United Kingdom the follo...

retired46

•5 years ago

12 Replies

I am soon to start inhaled Pentamidine instead of Atovaquone to prevent PCP - has anyone suffered any side affects from this?

I've taken Atovaquone, to prevent PCP, throughout my chemo and the last 7months post chemo. At my last Clinic appointment the Consultant decided that when I...

I've taken Atovaquone, to prevent PCP, throughout my chemo and the last 7months ...

Kingfisher20

•5 years ago

6 Replies

No email today

Anyone having problems with today's update? miss my morning read. Thank you jenny uk

Anyone having problems with today's update? miss my morning read. Thank you jen...

very

•5 years ago

9 Replies

Venetoclax and Swelling

I was on Venetoclax for 12 days late in March. My legs and feet began to swell and my oncologist took me off the medication on April 1. The edema has...

I was on Venetoclax for 12 days late in March. My legs and feet began to swell ...

umpireman

•5 years ago

16 Replies

Weekly Zarzio?

Hi there. because of the WBC drop (I'm on Venetoclax) one oncologist at the hospital recommended 2 weekly shots at one day's distance as opposed to the set of...

Hi there. because of the WBC drop (I'm on Venetoclax) one oncologist at the hosp...

CarmenfromParis

•5 years ago

6 Replies

Presnosone dose

Always get good advice from you guys. I was diagnosed with GCA in February and put on 50 mg then went down to 35 mg. Been miserable ever since. I seem to have...

Always get good advice from you guys. I was diagnosed with GCA in February and p...

Ryliefew123dogcat

•5 years ago

3 Replies

Do most people on Imbruvica have to take allopurinol also?

I have been on IB for almost 3 months and I really don’t like taking allopurinol and I’m wondering how long do most people have to take it and do most docs...

I have been on IB for almost 3 months and I really don’t like taking allopurinol...

narl

•5 years ago

38 Replies

I’m new

So nice to be part of the CLL family. I’ve had CLL for 5 years. Last month I became ill with a upper respiratory infection. After being on prednisone my WCC...

So nice to be part of the CLL family. I’ve had CLL for 5 years. Last month I b...

Succulent

•5 years ago

6 Replies

Words do matter...

https://powerfulpatients.org/2019/04/24/words-matter-why-cancer-isnt-a-game-of-winners-or-losers/

https://powerfulpatients.org/2019/04/24/words-matter-why-cancer-isnt-a-game-of-w...

Yvbb

•5 years ago

23 Replies

Spots that are turning nasty! Dapsone

Hi everybody, tried Cotrimoxazole but could not tolerate. My haematologist has put me one Dapsone which is bringing me out in nasty sores, they take a long...

Hi everybody, tried Cotrimoxazole but could not tolerate. My haematologist has p...

Broadbent

•5 years ago

6 Replies

Update #3 Treatment Begins

Well hello again all, Wanted to start by thanking all those who have been following along on my journey. I am doing this for my sanity and to also show...

Well hello again all, Wanted to start by thanking all those who have been follo...

Coolerjoe

•5 years ago

17 Replies

Bone Marrow Biopsy

I thought I would give my take on my first B M biopsy experience, and hopefully it will give others that have this pleasure to come some comfort. I had heard...

I thought I would give my take on my first B M biopsy experience, and hopefully ...

dandelup

•5 years ago

35 Replies

Expert Access Program at the CLL Society

The CLL Society is expanding our Expert Access program in 2019. Inclusion criteria are simple: a USA address, a diagnosis of CLL, and you are not currently...

The CLL Society is expanding our Expert Access program in 2019. Inclusion criter...

bkoffman

CLL CURE Hero•5 years ago

3 Replies

Ibrutinib-Venetoclax-Acalabrutinib

I think ibrutinib has lactose. How bout venetoclax and acalabrutinib? How do lactose intolerant patients manage the situation?

I think ibrutinib has lactose. How bout venetoclax and acalabrutinib? How do lac...

Motoli

•5 years ago

3 Replies

Ibrutinib and A-fib

I'm new here and have had CLL for 15 years. Just now we are considering treatment. I like the drug ibrutinib but I also have A-fib. Does anyone know of...

I'm new here and have had CLL for 15 years. Just now we are considering treatme...

prayerstep

•5 years ago

8 Replies

Wbc count 425000

My father aged 69 having cll nhl who is diagnosed 13 years back. He had multiple cycles of chemo with bentasmine and ritixmab. The last chemo was taken before...

My father aged 69 having cll nhl who is diagnosed 13 years back. He had multiple...

Sss1612

•5 years ago

5 Replies

Low platelets 14year old girl

Hiya just looking for some advice please or anyone in the same situation I took my 14year old daughter to the doctors 6 weeks ago due to her having 2swollen...

Hiya just looking for some advice please or anyone in the same situation I took ...

Sasperella

•5 years ago

5 Replies

Back on Imbruvica lower dose increased back & muscle pain

After going off 420 mg Imb for 2 weeks my previous wbc was at 223,00 down from 290,000 but I was experiencing severe muscle / back pain. My onc/hemo suggested...

After going off 420 mg Imb for 2 weeks my previous wbc was at 223,00 down from 2...

2tas

•5 years ago

8 Replies

HELP

I have pretty severe wounds on my head.. I had a mass which I regretfully popped and ever since then (7months ago) I've had them and they WONT HEAL. old what...

I have pretty severe wounds on my head.. I had a mass which I regretfully popped...

Unhealthy_unhappy

•5 years ago

4 Replies

Bloodwork keeps trending down

Bloodwork keeps trending down.. lymph abs dropped by significantly since diagnosis. Several large lymph nodes have gone away completely. Is this a sign of...

Bloodwork keeps trending down.. lymph abs dropped by significantly since diagnos...

Floridagirl49

•5 years ago

10 Replies

Classes of novel drugs

Since i have both p53 and p17 . Novel drugs are all i will have since chemo not effective and i really don't want a transplant. gazyva and its successors...

Since i have both p53 and p17 . Novel drugs are all i will have since chemo no...

Hidden

•5 years ago

10 Replies

ASH 2018: Dr. Kipps on antibodies and Venetoclax resistance

Venetoclax was changed how we treat CLL, but it doesn't work for everyone and it doesn't always continue to work. In the first part of my interview with Dr....

Venetoclax was changed how we treat CLL, but it doesn't work for everyone and it...

bkoffman

CLL CURE Hero•5 years ago

11 Replies

Heart Rythym challenge while on Imbrutinib

Hi All..I’ve been taking Imbrutinib for about eight weeks now with good results although still a lot of room for more improvement. Has anyone developed any...

Hi All..I’ve been taking Imbrutinib for about eight weeks now with good results ...

2016miniman

•5 years ago

3 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for April 2019

Intro

Wait& watch with Cll

In memory of Chris

IGVH Hypermutation test.

allopurinol

Terrible rash. Any advice?

Should we be worried about measles?

Southampton Area United Kingdom

I am soon to start inhaled Pentamidine instead of Atovaquone to prevent PCP - has anyone suffered any side affects from this?

No email today

Venetoclax and Swelling

Weekly Zarzio?

Presnosone dose

Do most people on Imbruvica have to take allopurinol also?

I’m new

Words do matter...

Spots that are turning nasty! Dapsone

Update #3 Treatment Begins

Bone Marrow Biopsy

Expert Access Program at the CLL Society

Ibrutinib-Venetoclax-Acalabrutinib

Ibrutinib and A-fib

Wbc count 425000

Low platelets 14year old girl

Back on Imbruvica lower dose increased back & muscle pain

HELP

Bloodwork keeps trending down

Classes of novel drugs

ASH 2018: Dr. Kipps on antibodies and Venetoclax resistance

Heart Rythym challenge while on Imbrutinib

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