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CLL Support

22,513 members • 38,668 posts

All posts for August 2017

Bone marrow test

The doctor received my husband's ct scan results and said that spleen is fine, some lymph nodes are enlarged but he still is not sure what is causing the...

The doctor received my husband's ct scan results and said that spleen is fine, s...

nurgul

•7 years ago

4 Replies

Help! Newly diagnosed 31yr old very confused.

Hi All! My 31 yr old brother was diagnosed with CLL this week. He is not symptomatic but has/had extremely swollen lymph nodes for several years (at least...

Hi All! My 31 yr old brother was diagnosed with CLL this week. He is not symptom...

Jade263

•7 years ago

26 Replies

Another "latest" update

Afternoon everyone. Hubby was at Dermatology yesterday to have an MOHS procedure. Appt was at 8.30, we left 11 hours later. The BCC on his ear took 6...

Afternoon everyone. Hubby was at Dermatology yesterday to have an MOHS procedur...

Susiecarer

•7 years ago

3 Replies

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FlAIR trial screening advised for me follow up to previous posts.

Hi everyone after several consultations with my centre of care and a second opinion I am going for FLAIR screening permitting. Treatment needed now was...

Hi everyone after several consultations with my centre of care and a second opin...

annmcgowan

•7 years ago

6 Replies

Newly diagnosed

I have just been told I have call after going to doctor with afib. My WBC was 388,000 and is now 336,000. They want to start kemo now though my heart seemed my...

I have just been told I have call after going to doctor with afib. My WBC was 38...

CLLStone

•7 years ago

3 Replies

Imbruvica and low sodium

(Update: His kidney doctor has confirmed that it was, in fact, Imbruvica that most likely caused the low sodium issue and that they will be taking my dad off...

(Update: His kidney doctor has confirmed that it was, in fact, Imbruvica that mo...

huhwhat90

•7 years ago

2 Replies

One Week Until Final Clinical Trial Mythbusters Webinar!

Is there medical research going on that is open to you and could be the key to feeling better? That’s what a clinical trial can be, but many people are...

Is there medical research going on that is open to you and could be the key to f...

tclementi

•7 years ago

Be the first to reply

New hemoncology blog looks interesting!

This new hemoncology blog looks quite interesting for CLL and ALL background. Only a few posts so far but could develop into an interesting educational...

This new hemoncology blog looks quite interesting for CLL and ALL background. On...

CLL1

•7 years ago

10 Replies

Platelets

Platelets elevated n white blood cells elevated I have had both that have been elevated for a good bit now ….theyve checked every areas for reasons wbc could...

Platelets elevated n white blood cells elevated I have had both that have been e...

Angiewryan

•7 years ago

6 Replies

Down

Am on Ibrutinib and everything is going well. But depression has struck. I cannot believe how depressed I am. Any answers out there.

Am on Ibrutinib and everything is going well. But depression has struck. I canno...

Broadbent

•7 years ago

8 Replies

Sternum pain after starting Ibrutinib

I started Ibrutinib a month ago and all is OK . I had a bout of very high fever and received IV antibiotics. But from time to time I have a really very very...

I started Ibrutinib a month ago and all is OK . I had a bout of very high fever ...

GIDI

•7 years ago

6 Replies

Changing CD38

I'm new to you support association and grateful to have found it. I've had Cll for 2 years and had another biopsy last week on an axillary lymph node. The...

I'm new to you support association and grateful to have found it. I've had Cll f...

wiggles123

•7 years ago

4 Replies

Cllsa bloodwise awareness London 4Th September

Hi Anyone on here going to this promotion event I will be there if you are say hi

Hi Anyone on here going to this promotion event I will be there if you are say ...

cartwheels

•7 years ago

2 Replies

Questions of steps in TX plan

I would like to know what the next step is when Imbruvica stops working. Should I be looking for a donor match? Do they increase the dosage?

I would like to know what the next step is when Imbruvica stops working. Should ...

mandimandi

•7 years ago

4 Replies

Bug bite reaction

Hi Everyone started Venetoclax last Thursday and on Sunday got bit by something and as usual I have a bad reaction. Swollen foot and .3 big blisters the size...

Hi Everyone started Venetoclax last Thursday and on Sunday got bit by something ...

ReneeSusan

•7 years ago

8 Replies

Starting FCR for CLL

Has anyone done an FCR treatment and if so how were the side effects? Any warnings about FCR that should steer away from going through with treatment?

Has anyone done an FCR treatment and if so how were the side effects? Any warnin...

Fbarcia

•7 years ago

9 Replies

Feedback please

How quickly do swollen lymph nodes respond to BR? What are your experiences in hair loss? Same re: side effects? I will be starting treatment soon. Thanks.

How quickly do swollen lymph nodes respond to BR? What are your experiences in h...

4365jan

•7 years ago

1 Reply

Possibility of CLL or generally a leukaimia?

Hello to everyone! I admire you all for your strenght and will to fight this decease. I am 27 years old male with bipolar disorder. I also have an IBS and some...

Hello to everyone! I admire you all for your strenght and will to fight this dec...

Forty

•7 years ago

7 Replies

Neoantigens Enable Personalized Cancer Immunotherapy

Hi hope everyone's having a sunny day in every sense of the word - I can't begin to tell you what a difference a bit of warm sunshine does for me. Anyway not...

Hi hope everyone's having a sunny day in every sense of the word - I can't begin...

Juliette02

•7 years ago

5 Replies

Australia

Is there any people in this group on south Australia

222husky

•7 years ago

7 Replies

Low hemoglobin - does it mean patient is having stage 3?

Dear all. Just read that low hemoglobin could mean that patient is having stage 3 of cll. Is this always often a case? Thank you.

Dear all. Just read that low hemoglobin could mean that patient is having stage ...

nurgul

•7 years ago

5 Replies

CLL with p53,17 deletion

Hello, my husband has CLL with a p53 and 17 deletion. He has a failed FCR. Our Doctor has ordered Ibrutinib for him to begin 2 tabs daily this week. Does...

Hello, my husband has CLL with a p53 and 17 deletion. He has a failed FCR. Our D...

Farrpottery

•7 years ago

9 Replies

Trying to understand CLL

My 58 year old husband has recently been diagnosed with CLL He has swollen lymph nodes under his arms in his neck and groin and at the back of his knees...

My 58 year old husband has recently been diagnosed with CLL He has swollen lymph...

trswarranty

•7 years ago

28 Replies

Ibrutinib and diarrhoea

Started Ibrutinib 3 months ago on the Ibrutinib/Venetoclax Trial. No side effects until start of week 8...diarrhoea. Didn't bother me at first as only once a...

Started Ibrutinib 3 months ago on the Ibrutinib/Venetoclax Trial. No side effect...

catnapcrew

•7 years ago

25 Replies

CLL and blood clots

I have controlled Chronic Lymphocytic Leukemia for six years with diet. Stress kicked me into stage 3. I have done two two day courses of chemo. I had no...

I have controlled Chronic Lymphocytic Leukemia for six years with diet. Stress ...

Lease

•7 years ago

9 Replies

Imbruvica side effects

My dad (67) has CLL and has been in remission up until a few weeks ago when his doctor suggested he go on Imbruvica due to consistently falling blood counts....

My dad (67) has CLL and has been in remission up until a few weeks ago when his ...

huhwhat90

•7 years ago

11 Replies

Latest update....

Wow where do I start, so much seems to have happened in the last couple of weeks. Whilst hubby was having transfusions his HB markers were climbing....100 two...

Wow where do I start, so much seems to have happened in the last couple of weeks...

Susiecarer

•7 years ago

6 Replies

If you receive a strange private message asking you to email Mark Thomas, it is a SCAM

We have a persistent spammer that uses a very unusual method of spamming: sending private messages to members. His username varies but the private...

We have a persistent spammer that uses a very unusual method of spamming: sendin...

AussieNeil

Administrator•7 years ago

4 Replies

Australians can be denied life insurance based on genetic test results, and there is little protection. How does your country compare?

Under Australian law, life insurance applicants must disclose any known genetic test results if requested by the insurer. This includes results from...

Under Australian law, life insurance applicants must disclose any known genetic ...

AussieNeil

Administrator•7 years ago

5 Replies

Could this new approach fix the crisis in clinical research publishing?

A new format of journal article 'The Registered Report model' has recently been introduced that hopes to tackle the problem of certain trials going...

A new format of journal article 'The Registered Report model' has recently been ...

AussieNeil

Administrator•7 years ago

4 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2017

Bone marrow test

Help! Newly diagnosed 31yr old very confused.

Another "latest" update

FlAIR trial screening advised for me follow up to previous posts.

Newly diagnosed

Imbruvica and low sodium

One Week Until Final Clinical Trial Mythbusters Webinar!

New hemoncology blog looks interesting!

Platelets

Down

Sternum pain after starting Ibrutinib

Changing CD38

Cllsa bloodwise awareness London 4Th September

Questions of steps in TX plan

Bug bite reaction

Starting FCR for CLL

Feedback please

Possibility of CLL or generally a leukaimia?

Neoantigens Enable Personalized Cancer Immunotherapy

Australia

Low hemoglobin - does it mean patient is having stage 3?

CLL with p53,17 deletion

Trying to understand CLL

Ibrutinib and diarrhoea

CLL and blood clots

Imbruvica side effects

Latest update....

If you receive a strange private message asking you to email Mark Thomas, it is a SCAM

Australians can be denied life insurance based on genetic test results, and there is little protection. How does your country compare?

Could this new approach fix the crisis in clinical research publishing?

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