Posts - CLL Support | HealthUnlocked

CLL Support

22,638 members • 38,863 posts

All posts for January 2018

Spots with Ibrutinib

Have been on Ibrutinib for over a year and had few side effects. But just lately have experienced blemishes on my skin. Is this a possible side effect?

Have been on Ibrutinib for over a year and had few side effects. But just lately...

Broadbent

•6 years ago

11 Replies

Do I have leukemia?

Hi, I got my blood work done last week and below are the reports. I am worried that I might have leukemia (I am a 23 year old male). Complete Blood Count...

Hi, I got my blood work done last week and below are the reports. I am worried t...

root55AA

•6 years ago

6 Replies

Husband on Imbruvica, went into sudden cardiac arrest

My husband was diagnosed with stage 4 CLL, went through one round of RCVP chemo with no results last year, so was started on Imbruvica in June 2017. The change...

My husband was diagnosed with stage 4 CLL, went through one round of RCVP chemo ...

bingbang

•6 years ago

21 Replies

Want to take advantage of all our features? Just log in!

Explainer: how does sunscreen work

Our compromised immune systems put us at considerably higher risk of skin cancers, (upwards of 10 times), so we have much to gain from learning how to protect...

Our compromised immune systems put us at considerably higher risk of skin cancer...

AussieNeil

Administrator•6 years ago

5 Replies

Swollen lymph nodes

Hi folks, It’s been a long time since I posted... was a conscious decision to try and get on with things and not think about my CLL (am a big over thinker) but...

Hi folks, It’s been a long time since I posted... was a conscious decision to tr...

Firefly14

•6 years ago

26 Replies

Vitamin D?

Hi All, Does Vitamin D help fight CLL? (I'm *pretty sure? you cannot take gobs of vitamin d, just asking.)

Hi All, Does Vitamin D help fight CLL? (I'm *pretty sure? you cannot take gobs o...

Hidden

•6 years ago

8 Replies

CLL question

Hello, I were diagnosed with CLL 5 years ago, 2 years ago had chemoterapy and now I’m taking Imbruvica already 1 month. My lyphnotes almost gone. Is anybody’...

Hello, I were diagnosed with CLL 5 years ago, 2 years ago had chemoterapy and no...

farber

•6 years ago

12 Replies

How alcohol permanently damages DNA in stem cells which subsequently increases cancer risks

A regular question asked after a CLL diagnosis is whether or not to stop drinking alcohol. Hence this paper just published in Nature may be of interest, given...

A regular question asked after a CLL diagnosis is whether or not to stop drinkin...

AussieNeil

Administrator•6 years ago

7 Replies

How bad is this ?

17p deleted at 5 percent w 53. 13q st 8 percent, ighv unmutated, cd38 negative. The 17p marker is not good yet DR says the other features somehow make up for...

17p deleted at 5 percent w 53. 13q st 8 percent, ighv unmutated, cd38 negative. ...

Mdudar

•6 years ago

3 Replies

Dr. Flinn on the German Venetoclax/Gazyva (obinutuzumab) trial

https://youtu.be/DJW3DuF0PmU

Cllcanada

Road to a BMT... oops just got there (Day +50)

Happy New Year - wishing you all a healthy, peaceful and happy 2018 I can’t believe we are already at day 50 in our BMT process - we have been home for 3 weeks...

Happy New Year - wishing you all a healthy, peaceful and happy 2018 I can’t beli...

NMMP

•6 years ago

9 Replies

Doctor support

Does anyone else out there have trouble getting support from their family doctor? I guess what I mean is empathy. I find my family doctor does not seem to care...

Does anyone else out there have trouble getting support from their family doctor...

Hidden

•6 years ago

6 Replies

Imbruvcica Dose

I started on Imbruvcia two months ago taking 3 _140mg per day... Is this the normal starting dose?... do they decrease the dose over time?... how long do you...

I started on Imbruvcia two months ago taking 3 _140mg per day... Is this the no...

emarine

•6 years ago

7 Replies

toenail fungus

Hello I would like a little input about a toe nail fungus I have had for about a year and a half.I have told my family Dr about it twice and he told me the...

Hello I would like a little input about a toe nail fungus I have had for about a...

pumpkin48

•6 years ago

39 Replies

Reminder to check your vitamin D levels

A post on one of the CLL forums about checking your vitamin D levels convinced me to request that test from my primary doctor a few years ago. Although I felt...

A post on one of the CLL forums about checking your vitamin D levels convinced m...

ChicagoDave

•6 years ago

3 Replies

Ibrutinib and Shingrix issues

Hi Everyone - So i spoke to my oncologist about getting this new Shingrix vaccination for shingles and this is what i was told. “Ibrutinib is an...

Hi Everyone - So i spoke to my oncologist about getting this new Shingrix vaccin...

Roydeane

•6 years ago

31 Replies

CAT scan

Hi, Is a CAT scan with barium drink ... are those bad for my immune system? Getting one Friday. :/

Hi, Is a CAT scan with barium drink ... are those bad for my immune system? Gett...

Hidden

•6 years ago

7 Replies

CAR-T Therapy Inquiry

CAR-T Therapy Inquiry Are you a patient or physician interested in CAR-T gene therapy? Call the Stanford Blood and Marrow Transplant Program at 650-723-0822....

CAR-T Therapy Inquiry Are you a patient or physician interested in CAR-T gene th...

Naka

•6 years ago

15 Replies

Make sure your Doctors are still covered by your insurance

For people in the USA it is important to do this time of year!! Be Well, Hoffy

For people in the USA it is important to do this time of year!! Be Well, Hoffy...

Hoffy

•6 years ago

Be the first to reply

Be aware of confusing stomach symptoms – lesson learned !!!

Happy New year! I am on the Clinical Trial of V plus I for the last year. So far I am MRD negative in the Blood and CR on the MRI. I am Unmutated and 17P...

Happy New year! I am on the Clinical Trial of V plus I for the last year. So...

Hoffy

•6 years ago

7 Replies

Can anyone advise of any CLL specialist in London

When we should start treatment for CLL ? and shall I do biopsy of bone marrow if my PLT more than 100

When we should start treatment for CLL ? and shall I do biopsy of bone marrow if...

al444

•6 years ago

5 Replies

Dark Urine with Imbruvica ?

Back in 09 learned I had stage 4 CLL & went through 6 mo of FCR chemo....all went well until Aug of 17 when my white count started rising 10k per month... in...

Back in 09 learned I had stage 4 CLL & went through 6 mo of FCR chemo....all w...

emarine

•6 years ago

12 Replies

Newly CLL diagnosed with 17p

I feel ok, stage zero, yet not sure they can treat this, this is by far the worst of them all. Anyone with 17p that can tell me something positive ?

I feel ok, stage zero, yet not sure they can treat this, this is by far the wors...

Mdudar

•6 years ago

27 Replies

6 Years W&W...

Just thought I’d post for the benefit of noob’s around here. No need to panic when receiving your initial diagnosis. Get advice on a CLL expert from others...

Just thought I’d post for the benefit of noob’s around here. No need to panic w...

ChicagoDave

•6 years ago

20 Replies

Thoughts of flu with cll

Hello again - Is there any precaution one should take if they do have CLL and develop a respiratory or intestinal flu? Just treat it as you would normally?...

Hello again - Is there any precaution one should take if they do have CLL and de...

578999lme

•6 years ago

8 Replies

Hand Problems

Been on imbruvica 1 year and three months. My numbers are excellent. My only negative is my hands and fingernails. The nails split and hands develop...

Been on imbruvica 1 year and three months. My numbers are excellent. My only n...

578999lme

•6 years ago

10 Replies

FCR on Flair trial at Christie Hospital

71yr male diagnosed 2yrs ago, CLL (Binet stage B) researched specialists and decided on Dr Bloor at Christie Hospital in Manchester, an excellent choice. W&W...

71yr male diagnosed 2yrs ago, CLL (Binet stage B) researched specialists and dec...

Anthonymac

•6 years ago

4 Replies

flair trial started today

Hi feeling positive after a 5 year w&w today I started my trial of inbrutinib and venetoclax for 1st line treatment here in uk On ibrutinib for 8 weeks then...

Hi feeling positive after a 5 year w&w today I started my trial of inbrutinib an...

buzzybab

•6 years ago

12 Replies

2017 - Bright and Dark

Greeting All, Always lurking and reading posts. After 6 x FCR in March '14 I'm still plodding on and even though my Consultant appointments have narrowed to 6...

Greeting All, Always lurking and reading posts. After 6 x FCR in March '14 I'm s...

Bribin

•6 years ago

3 Replies

Subcutaneous Rituxan... Dr. Fowler, MDACC

Already patients think that subcutaneous drug is somehow inferior to the IV version, but this is simply untrue.. both have similar efficacy. What differs is...

Already patients think that subcutaneous drug is somehow inferior to the IV vers...

Cllcanada

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for January 2018

Spots with Ibrutinib

Do I have leukemia?

Husband on Imbruvica, went into sudden cardiac arrest

Explainer: how does sunscreen work

Swollen lymph nodes

Vitamin D?

CLL question

How alcohol permanently damages DNA in stem cells which subsequently increases cancer risks

How bad is this ?

Dr. Flinn on the German Venetoclax/Gazyva (obinutuzumab) trial

Road to a BMT... oops just got there (Day +50)

Doctor support

Imbruvcica Dose

toenail fungus

Reminder to check your vitamin D levels

Ibrutinib and Shingrix issues

CAT scan

CAR-T Therapy Inquiry

Make sure your Doctors are still covered by your insurance

Be aware of confusing stomach symptoms – lesson learned !!!

Can anyone advise of any CLL specialist in London

Dark Urine with Imbruvica ?

Newly CLL diagnosed with 17p

6 Years W&W...

Thoughts of flu with cll

Hand Problems

FCR on Flair trial at Christie Hospital

flair trial started today

2017 - Bright and Dark

Subcutaneous Rituxan... Dr. Fowler, MDACC

Search posts

Pinned Posts

Latest poll

Part 2 of How well do you know HealthUnlocked's features? Rate yourself on this multichoice poll. Answers later or you can check Help!

Topics

Archive