Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for August 2018

Now being prescribed Ibrutinib

Hi all Good news, saw my consultant today and he's going to start me on Ibrutinib at the beginning is September. I'm having a bone marrow biopsy prior. Can't...

Hi all Good news, saw my consultant today and he's going to start me on Ibrutini...

Mick491

•6 years ago

27 Replies

Beer

What effects with imbruvica and drinking beer have?

Blallen

•6 years ago

9 Replies

Drug Costs

Im interested in how those with CLL are affording expensive cancer drugs. Even with insurance the cost of cancer could wipe out a persons life saving....

Im interested in how those with CLL are affording expensive cancer drugs. Even w...

Minda1941

•6 years ago

14 Replies

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Being told you have cll or any kind of cancer is a shock to most people ..

I first learned that I had cll in 2016 ….I have read were ginger , chamomile , and turmeric are all good for cll ..I was wondering if any one has tried these...

I first learned that I had cll in 2016 ….I have read were ginger , chamomile , a...

maddog47

•6 years ago

4 Replies

Ibrutinib vs FCR: does order of therapy matter?

Time for a really specific question that is at the nub of the decision faced by doctors and patients when it is time to initiate first treatment. Does it...

Time for a really specific question that is at the nub of the decision faced by ...

AdrianUK

•6 years ago

19 Replies

Imbruvica Alternatives ?

I have had NHL ( indolent) since 1991 and have been on Imbruvica for 18 months. Lots of treatments in between. The numbers are great but I have weakness in...

I have had NHL ( indolent) since 1991 and have been on Imbruvica for 18 months....

Pirate64

•6 years ago

11 Replies

Nausea from antifungal med

Does anyone have any recs for nausea as the Cresemba (oral) and iv ambisone are causing extreme nausea? Prescription anti nausea meds are very constipating....

Does anyone have any recs for nausea as the Cresemba (oral) and iv ambisone are ...

Ladydi49

•6 years ago

26 Replies

Extended Diarrhea

I have been experiencing diarrhea for more than 6 weeks. It started about a month after beginning Sotalol for my heart issues. I am now also on Venetoclax...

I have been experiencing diarrhea for more than 6 weeks. It started about a mon...

umpireman

•6 years ago

18 Replies

Does Ibrutinib cause issues with type two diabetes

Hi all. As the title depicts,I just started Ibrutinib on Thursday and being a type two diabetic I'm always checking my bloods to keep them around the 7 mark,...

Hi all. As the title depicts,I just started Ibrutinib on Thursday and being a t...

saintjohn

•6 years ago

7 Replies

Response and Survival Rates for FCR and Ibrutinib

Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical...

Those of you who waded through my post yesterday on clonal evolution will be gla...

AdrianUK

•6 years ago

17 Replies

Mouth sores

Imbruvica and mouth sores

Bjhayes14

•6 years ago

16 Replies

CAR T-Cell Developments in Lymphoma Dr. Ian Flinn Highlights

Flinn Highlights CAR T-Cell Developments in Lymphoma by Brandon Scalea Published: Thursday, Aug 09, 2018 -...

Flinn Highlights CAR T-Cell Developments in Lymphoma by Brandon Scalea Publi...

lankisterguy

Volunteer•6 years ago

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Promising Strategies in CLL; Risk-Stratifying Factors; CLL: The Risk of Richter’s Transformation- ONCLive Drs Wierda, Lamanna, Davids, Ma

Three video discussions (with written transcripts) covering why Bone Marrow biopsies and CT Scans are NOT always needed at diagnosis, What genetic testing is...

Three video discussions (with written transcripts) covering why Bone Marrow biop...

lankisterguy

Volunteer•6 years ago

8 Replies

Clonal Evolution, mutations and resistance to CLL treatment

When someone is diagnosed with CLL they have at least one clone of B lymphocytes that are growing faster than they should and/or dying less than they should....

When someone is diagnosed with CLL they have at least one clone of B lymphocyte...

AdrianUK

•6 years ago

9 Replies

Heat intolerance

Heat Intolerance so there’s a name for it I’m in New Jersey 64 years old I have never had such intolerance to the heat and humidity like I’ve had this summer...

Heat Intolerance so there’s a name for it I’m in New Jersey 64 years old I hav...

Effenhumidity2018

•6 years ago

17 Replies

Waiting

Still waiting. I admire all on this site. Am concerned should I have husband get flu shot in Sept? No symptoms yet and hemotoligist did his own bloodwork....

Still waiting. I admire all on this site. Am concerned should I have husband g...

Happiness22

•6 years ago

69 Replies

Blood tests

I have CLL since 2007 been on watch and wait no treatment 2 weeks ago white count uo from 9 to 14 lymphcites 9 re test today white count up to 15.1 lymphcites...

I have CLL since 2007 been on watch and wait no treatment 2 weeks ago white coun...

Poi098

•6 years ago

10 Replies

Today’s checkup

Was on yearly visits and back in April I felt some nodes in my neck and my anxiety started going haywire. Was supposed to see doc in December, but got it...

Was on yearly visits and back in April I felt some nodes in my neck and my anxie...

baq724

•6 years ago

5 Replies

It helps

Hi. If anyone is experiencing neck pain I totally recommend reflexology. For the past 6 years I've been doing reflexology and most of the time, No neck pain....

Hi. If anyone is experiencing neck pain I totally recommend reflexology. For th...

dcfrey645

•6 years ago

5 Replies

white counts going up

Has anyone experienced their counts going up after changing from the Imbruvica capsule to the new tablet they are now making, they say is the same amount of...

Has anyone experienced their counts going up after changing from the Imbruvica c...

156MA019

•6 years ago

5 Replies

Rituximab for B cell infiltration (diffuse) in all sinus cavities and suspected nasal septum infiltration

The doctor has recommended Rituximab (1x a week for 4 weeks) to decrease the inflamed tissue. While researching chemo drugs for CLL/SLL I see several notices...

The doctor has recommended Rituximab (1x a week for 4 weeks) to decrease the inf...

Sallybee44

•6 years ago

4 Replies

FLAIR Study Site List Map / UK CLL Expert Centres

I have received from the organisers of the UK FLAIR trial an updated list of hospitals and doctors running the FLAIR trial, which you can find below or by...

I have received from the organisers of the UK FLAIR trial an updated list of hos...

AdrianUK

•6 years ago

14 Replies

Ibrutinib and Venetoclax

Hey Guys, How long do the novel drugs like Ibrutinib and Venetoclax work for, for CLL?

Hey Guys, How long do the novel drugs like Ibrutinib and Venetoclax work for, fo...

J_88

•6 years ago

21 Replies

Starting Chemo With Gazayva

First diagnosed with CLL in 2014 with "watchful waiting" until now. Starting Chemo next week with GAZYVA. Anyone have any experience with this drug?

First diagnosed with CLL in 2014 with "watchful waiting" until now. Starting Che...

redlion1

•6 years ago

9 Replies

Aranesp

My oncologist gave me a shot of Aranesp during my last visit. My HGB had dropped to 8.6 and the RBC to 2.52. Has anyone else been given this medication?...

My oncologist gave me a shot of Aranesp during my last visit. My HGB had droppe...

umpireman

•6 years ago

6 Replies

We are waiting right now. And 48000 Dr was encouraging. What foods are better to give him. He loves ice cream. No symptoms as of now

We are waiting right now wb c 4800 no other symptoms as of yet. What foods are good for him. He loves ice cream 48000

We are waiting right now wb c 4800 no other symptoms as of yet. What foods are g...

Happiness22

•6 years ago

6 Replies

Colorado Springs, CO

Hi All CLL'ers! Hope all is well for everyone. Just putting this out there. Thinking of retiring to the Colorado someday. I was wondering if anyone knows...

Hi All CLL'ers! Hope all is well for everyone. Just putting this out there. T...

MichelleM61

•6 years ago

7 Replies

Ibrutinib - Side effects

Hi everyone!😊 I've been on Ibrutinib since 21st May. I'm getting lots of side effects lately - working at home today with a sore throat. Also getting spots...

Hi everyone!😊 I've been on Ibrutinib since 21st May. I'm getting lots of side e...

Shira7

•6 years ago

46 Replies

LDH encrease

Hello, is anybody experienced increase of h LDH during on Imbruvica ?

farber

•6 years ago

2 Replies

Dr Alan Rabinowitz (Panthera Founder) Tribute

https://www.panthera.org/alan-rabinowitz-tribute Diagnosed with CLL 2001 A life well lived ...

https://www.panthera.org/alan-rabinowitz-tribute Diagnosed with CLL 2001 A life...

db601

•6 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2018

Now being prescribed Ibrutinib

Beer

Drug Costs

Being told you have cll or any kind of cancer is a shock to most people ..

Ibrutinib vs FCR: does order of therapy matter?

Imbruvica Alternatives ?

Nausea from antifungal med

Extended Diarrhea

Does Ibrutinib cause issues with type two diabetes

Response and Survival Rates for FCR and Ibrutinib

Mouth sores

CAR T-Cell Developments in Lymphoma Dr. Ian Flinn Highlights

Promising Strategies in CLL; Risk-Stratifying Factors; CLL: The Risk of Richter’s Transformation- ONCLive Drs Wierda, Lamanna, Davids, Ma

Clonal Evolution, mutations and resistance to CLL treatment

Heat intolerance

Waiting

Blood tests

Today’s checkup

It helps

white counts going up

Rituximab for B cell infiltration (diffuse) in all sinus cavities and suspected nasal septum infiltration

FLAIR Study Site List Map / UK CLL Expert Centres

Ibrutinib and Venetoclax

Starting Chemo With Gazayva

Aranesp

We are waiting right now. And 48000 Dr was encouraging. What foods are better to give him. He loves ice cream. No symptoms as of now

Colorado Springs, CO

Ibrutinib - Side effects

LDH encrease

Dr Alan Rabinowitz (Panthera Founder) Tribute

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