Posts - CLL Support | HealthUnlocked

CLL Support

23,253 members•39,949 posts

All posts for July 2019

Exciting times for CLL

The end of Chemo for first line treatment is near. Hang on in there is there is a bright light at the end of the tunnel...

The end of Chemo for first line treatment is near. Hang on in there is there is ...

Hidden

•5 years ago

2 Replies

Rheumatoid Arthritis and CLL

This is my first post in this group since I was diagnosed May of this year. I am 47 years old and have had RA for 17 years diagnosed at 30. I have taken...

This is my first post in this group since I was diagnosed May of this year. I am...

KLH1972

•5 years ago

6 Replies

is there hope

after three months on ibrdutinib I'm getting red pimples all over my face and some on my hands will these disappear in time or can i treat them

after three months on ibrdutinib I'm getting red pimples all over my face and so...

bali103

•5 years ago

3 Replies

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Enlarged spleen

Diagnosis enlarged spleen and getting bigger on last vist can any explain

Hidden

•5 years ago

10 Replies

New Portland, OR Support Group meeting 8/14

We are happy to announce that the CLL Society's Portland, OR support group will have their first meeting 8/14/19 at 6 pm at the Hillsdale Library 1525 SW...

We are happy to announce that the CLL Society's Portland, OR support group will ...

ChrisLovesLife

•5 years ago

4 Replies

Can anyone recommend a CLL expert MD preferably in North Central WI or nearby

I live in North Central Wisconsin (Marathon county) USA about 2 hours drive directly North of the capital of Madison, Wisconsin. Can anyone please recommend a...

I live in North Central Wisconsin (Marathon county) USA about 2 hours drive dire...

Bobsterguy

•5 years ago

10 Replies

Ibrutinib side effects

My husband is taking Ibrutinib for CLL and one of his many side effects is very dry skin and constant cracking and peeling of his finger nails - to the point...

My husband is taking Ibrutinib for CLL and one of his many side effects is very...

Junibird

•5 years ago

18 Replies

EU Panel Backs Expanded Indication of Ibrutinib Combos in CLL

Friday, Jun 28, 2019 The European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has recommended expanding the indications of...

Friday, Jun 28, 2019 The European Medicines Agency’s Committee for Medicinal Pro...

Jm954

Administrator•5 years ago

4 Replies

Dr. Shadman on Fixed Durations of Treatment in CLL

Mazyar Shadman, MD, MPH Published: Monday, Jul 08, 2019 Mazyar Shadman, MD, MPH, assistant member, Clinical Research Division, Fred Hutchinson Cancer Research...

Mazyar Shadman, MD, MPH Published: Monday, Jul 08, 2019 Mazyar Shadman, MD, MPH,...

Jm954

Administrator•5 years ago

6 Replies

Ibrutinib, is it working for me?

Hi all Let's start with the good news, I found 5p in the road lol. My update is that I'm quite poorly and we are trying to identify the cause. Like many at my...

Hi all Let's start with the good news, I found 5p in the road lol. My update is...

Mick491

•5 years ago

19 Replies

No comfort from Insurance Cos while suffering from Cancer

It’s 3 years since I was diagnosed with CLL stage 0 and got another set back yesterday Turned down for LTC policy While I did not ask for this cancer yet I...

It’s 3 years since I was diagnosed with CLL stage 0 and got another set back ye...

Hidden

•5 years ago

8 Replies

Newly diagnosed with Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma - CLL/SLL or just found us? This post is for you!

Welcome to the CLL Support community on HealthUnlocked, a very active community with 23,000 members. This pinned post is specifically for new members, in...

Welcome to the CLL Support community on HealthUnlocked, a very active community ...

AussieNeil

Administrator•5 years ago

10 Replies

8 and 1/2 months on ibrutinib , great news

After 8 1/2 months on Ibrutinib, new labs and ct scan , i was told by my Dr : 1- All labs are back to normal , no more lymphocytosis !!! 2- CT scans showed...

After 8 1/2 months on Ibrutinib, new labs and ct scan , i was told by my Dr : 1-...

antonb

•5 years ago

10 Replies

New York City -- CLL Patient Support Group We will meet on the second Sunday in July (and the 3rd Sunday in August) at 3:00pm

CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Group The CLL Society invites you to our support group sponsored by the CLL...

CLL PATIENT AND CAREGIVER SUPPORT GROUP New York City -- CLL Patient Support Gro...

lankisterguy

Volunteer•5 years ago

1 Reply

Would like to be boring but just starting out!

Newly diagnosed with CLL after tissue samples from my basal cell skin cancer came back. Has anyone in the Uk had the Shingrix vaccination? I understand it’s...

Newly diagnosed with CLL after tissue samples from my basal cell skin cancer cam...

jane1301

•5 years ago

24 Replies

CLL Patient and Caregiver Support Group of Long Island Monthly Meeting - July 11th.

An open invitation to anyone who may be in the Long Island, NY area. We will be having our monthly meeting and would love to have you join us - both patients...

An open invitation to anyone who may be in the Long Island, NY area. We will be...

SusanBot

•5 years ago

5 Replies

Itching, rash and bumps after CLL/SLL treatments?

Itching, rash and bumps after CLL/SLL treatments? My husband finished his second round of treatment last January. Since he started his first treatments about...

Itching, rash and bumps after CLL/SLL treatments? My husband finished his second...

blur81

•5 years ago

4 Replies

MS Contin vs bupernorphine

Dr changed me from MS Contin to bupernorphine - anyone else done this ?

dooner6

•5 years ago

6 Replies

Zanubrutinib versus Acalabrutinib: cardiac side effects

I just learned of zanubrutinib. Does anyone know if it is purported to have fewer cardiac side effects than acalabrutinib? I can't find anything on line...

I just learned of zanubrutinib. Does anyone know if it is purported to have fewe...

profrich

•5 years ago

4 Replies

Is 400 mg of venetoclax always better?

A number of people in the CLL forum seem to have the same problem. That is, they can’t tolerate 400 mg of venetoclax. However, they seem to do fine on 200 mg...

A number of people in the CLL forum seem to have the same problem. That is, they...

profrich

•5 years ago

45 Replies

Anyone on Eliquis and ibrutinib, or other CLL med?

I've read a Mayo Clinic article discussing the use of ibrutinib and blood thinners due to afib, re-introducing ibrutinib at 280 mg dosage. Frequent monitoring...

I've read a Mayo Clinic article discussing the use of ibrutinib and blood thinn...

cll2013

•5 years ago

6 Replies

Rough patch

Beeen on imbrutinib for almost 5 months now and was doing extremely well and plan to keep on doing so! Noticed a bump in blood pressure which I knew was a side...

Beeen on imbrutinib for almost 5 months now and was doing extremely well and pla...

haposwald

•5 years ago

6 Replies

feeling better

been feeling much better this week worked it out every time I had my morning coffee I felt the depression come on no coffee for a week no depression. little...

been feeling much better this week worked it out every time I had my morning cof...

bali103

•5 years ago

Be the first to reply

Remission over .... venetoclax (&R) here we come

After 4 years of remission following FCR we heard yesterday that my husband’s remission is over. We had been suspecting this for about 6 months - the blood...

After 4 years of remission following FCR we heard yesterday that my husband’s re...

Fowey2009

•5 years ago

5 Replies

CAR-t on BBC2 Sunday 9 pm

Interesting programme 9 pm this Sunday

KAS8

•5 years ago

3 Replies

MRD-U Baby your one of four in two million!

So had a consultation with the amazing Prof Hillmen who is based in Leeds, but occasionally sees patients in Harley Street. He is great as a second opinion and...

So had a consultation with the amazing Prof Hillmen who is based in Leeds, but o...

AdrianUK

•5 years ago

40 Replies

Anyone taking 100 mg of acalabrutinib?

I switched from acalabrutinib to venetoclax. Now I plan to take both. I want to only take 100 mg of acalabrutinib to minimize side effects. Is anyone doing...

I switched from acalabrutinib to venetoclax. Now I plan to take both. I want to ...

profrich

•5 years ago

40 Replies

Remission after Bendamustine and Rituximab

I've not long completed treatment with Bendamustine and Rituxumab (FCR back in 2015). I'm now recovering, which mainly means getting my bowels back to...

I've not long completed treatment with Bendamustine and Rituxumab (FCR back in 2...

snowdroprose

•5 years ago

17 Replies

Pleural effusion, its implications and pain relief

My husband has been diagnosed three days ago with pleural effusion and is due to have it drained in a weeks time. He's been on the Flair trial with ibrutanib...

My husband has been diagnosed three days ago with pleural effusion and is due to...

Poohey

•5 years ago

6 Replies

Achey hips

Hi a few years before I was dx I remember having achey hips especially in the summer and put it down to playing tennis , football etc that was when I was 47 ....

Hi a few years before I was dx I remember having achey hips especially in the su...

cartwheels

•5 years ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for July 2019

Exciting times for CLL

Rheumatoid Arthritis and CLL

is there hope

Enlarged spleen

New Portland, OR Support Group meeting 8/14

Can anyone recommend a CLL expert MD preferably in North Central WI or nearby

Ibrutinib side effects

EU Panel Backs Expanded Indication of Ibrutinib Combos in CLL

Dr. Shadman on Fixed Durations of Treatment in CLL

Ibrutinib, is it working for me?

No comfort from Insurance Cos while suffering from Cancer

Newly diagnosed with Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma - CLL/SLL or just found us? This post is for you!

8 and 1/2 months on ibrutinib , great news

New York City -- CLL Patient Support Group We will meet on the second Sunday in July (and the 3rd Sunday in August) at 3:00pm

Would like to be boring but just starting out!

CLL Patient and Caregiver Support Group of Long Island Monthly Meeting - July 11th.

Itching, rash and bumps after CLL/SLL treatments?

MS Contin vs bupernorphine

Zanubrutinib versus Acalabrutinib: cardiac side effects

Is 400 mg of venetoclax always better?

Anyone on Eliquis and ibrutinib, or other CLL med?

Rough patch

feeling better

Remission over .... venetoclax (&R) here we come

CAR-t on BBC2 Sunday 9 pm

MRD-U Baby your one of four in two million!

Anyone taking 100 mg of acalabrutinib?

Remission after Bendamustine and Rituximab

Pleural effusion, its implications and pain relief

Achey hips

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