Posts - CLL Support | HealthUnlocked

CLL Support

22,511 members • 38,663 posts

All posts for May 2019

Thank you

After reading a post from Emma I finally do not feel completely alone. My struggle with night sweating and intense daytime heat with extreme sweating have me...

After reading a post from Emma I finally do not feel completely alone. My strugg...

Sotired50

•5 years ago

3 Replies

Newly approved

Not sure if this recently approved combination treatment is the same as the aforementioned one because I couldn’t find a reference to 17p deletion in this one,...

Not sure if this recently approved combination treatment is the same as the afor...

Survivor1951

•5 years ago

5 Replies

Anniversary

Today is my one year anniversary on Ibrutinib. I had a little bumpy start but overall I have done very well. My blood work is close to normal. My hemoglobin...

Today is my one year anniversary on Ibrutinib. I had a little bumpy start but ov...

migirlusa

•5 years ago

17 Replies

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Vaccination for travelling to Nairobi

Cll w and w for 2.5 years. Requires typhoid dithteria and tetanos Jab. Any advice or experience. Most grateful as usual for any reply.

Cll w and w for 2.5 years. Requires typhoid dithteria and tetanos Jab. Any advic...

Jucl

•5 years ago

7 Replies

Just returned from CLL Society training and a local Patient Power Symposium, Portland, Oregon

Feeling so encouraged by all of the new information I've learned. Please view the recent Patient Power symposium on their website. Riveting interviews with...

Feeling so encouraged by all of the new information I've learned. Please view t...

ChrisLovesLife

•5 years ago

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effects of strong electromagnetic fields

Quick question. Does anyone know if any studies have been conducted on the relationship between exposure to strong electromagnetic fields, such as 5T NMR...

Quick question. Does anyone know if any studies have been conducted on the relat...

Random78

•5 years ago

2 Replies

Fourth Day

Greetings to my brothers and sisters of the blood crud! Well into my 4th day of imbruvica -I am doing well; no discernible side effects. Pacing myself dealing...

Greetings to my brothers and sisters of the blood crud! Well into my 4th day of ...

wilhoitaz

•5 years ago

5 Replies

Explainer: what’s actually in our blood?

Blood is vitally important for our body. As it’s pumped around our body through veins and arteries, it transports oxygen from our lungs to all of the other...

Blood is vitally important for our body. As it’s pumped around our body through ...

AussieNeil

Administrator•5 years ago

2 Replies

Turmeric - a good supplement?

I have read that turmeric is a good supplement for CLL patients. Any indications on how much we should be taking please?

I have read that turmeric is a good supplement for CLL patients. Any indications...

Clovelly

•5 years ago

9 Replies

DEBILITATING FATIGUE

Should I try harder to just PUSH THROUGH this fatigue and do chores, run errands, complete personal business, do self care etc? I literally can barely get out...

Should I try harder to just PUSH THROUGH this fatigue and do chores, run errands...

CLLmoxie

•5 years ago

32 Replies

New York City -- CLL Patient Support Group Sunday June 9, 2019 3pm – 5pm

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

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is tylenol safe when on ibrutinib?

Is it safe to take Tylenol for tooth infection when on ibrutinib , Temperature is 38.5

Is it safe to take Tylenol for tooth infection when on ibrutinib , Temperatur...

onu1tadi2

•5 years ago

18 Replies

IVGH mutation status

Can a CLL patient go from unmutated to mutated? That appears to be what my recent test indicates. My appointment is on 6/4.

Can a CLL patient go from unmutated to mutated? That appears to be what my recen...

CLLmoxie

•5 years ago

13 Replies

CLL Specialist in California

CLL Specialist in California needed. I live in Northern California so I’m looking for the closest one possible. Thank you and blessings.

CLL Specialist in California needed. I live in Northern California so I’m lookin...

Rivergoddess

•5 years ago

34 Replies

Awaiting FISH results & bone marrow biopsy

Quick recap... diagnosed here in the U.K. December 2016... no issues whatsoever for 1 1/2 years and then last August started to develop unexplained infections...

Quick recap... diagnosed here in the U.K. December 2016... no issues whatsoever ...

AR0613

•5 years ago

2 Replies

I have TP53

I was told I will not react to chemo (anymore) and based on my mutations is either CarT or Stem Cell Transplant. I am deadly afraid of the latter and can't...

I was told I will not react to chemo (anymore) and based on my mutations is eith...

Doremefasol

•5 years ago

45 Replies

new to group

Hi Just joined recently have been confirmed with CLL a few weeks ago, no symptoms I can feel and would not have known if I had not had general blood tests...

Hi Just joined recently have been confirmed with CLL a few weeks ago, no sympt...

jim24

•5 years ago

10 Replies

Lump in my left armpit

Hello everyone. I am here thinking I might get some answers to my questions and worries. Few days ago I felt pain in my armpit. Days after that I noticed a...

Hello everyone. I am here thinking I might get some answers to my questions and ...

May25689

•5 years ago

2 Replies

Thank you Veterans

Just would like to say again Thank you. If not for you Great Men and Women of the UK and the USA and other countries we might all be speaking a different...

Just would like to say again Thank you. If not for you Great Men and Women of th...

Ballyhoo77

•5 years ago

2 Replies

Sleep Problems

Hello Everyone, It has been a while since I have posted anything but do try to keep up with you all. I have a question to see if i am weird or if any of my...

Hello Everyone, It has been a while since I have posted anything but do try to ...

BlueGillfisherman

•5 years ago

31 Replies

ASH 2018: Dr. Lamanna on combinations for CLL

The future for CLL treatment is likely combinations, but there are more questions than answers at this point. Dr. Lamanna discusses this at ASH 2018 here:...

The future for CLL treatment is likely combinations, but there are more question...

bkoffman

CLL CURE Hero•5 years ago

2 Replies

Emotional at 5 months FCR UK

New here Yeah. Thought it would be a breeze. I’m 60. Whoo. My emotions are all over the place. I’m doing well on all “counts” but as a gay man I don’t think my...

New here Yeah. Thought it would be a breeze. I’m 60. Whoo. My emotions are all o...

Gaday

•5 years ago

10 Replies

Is La Croix grapefruit essenced water safe with Ibrutinib?

We found this grapefruit “essenced” beverage on sale and bought it. The ingredients list says it is 100% water that has been essenced with fruit flavors. The...

We found this grapefruit “essenced” beverage on sale and bought it. The ingredie...

W00dfin

•5 years ago

13 Replies

Strange dizziness - anyone else get this?

I've been W&W for a couple of years, but the last time I was checked the consultant was concerned about the WBC count (and enlarged spleen). And generally I'm...

I've been W&W for a couple of years, but the last time I was checked the consult...

DMF_online

•5 years ago

12 Replies

Ibrutinib / Venetoclax journey

So, a quick update from me. Went for a checkup yesterday (Friday). Consultant pleased with status, Lymphocytes have reached the lofty heights of 1.1. The...

So, a quick update from me. Went for a checkup yesterday (Friday). Consultant ...

Oleboyredw-uk

•5 years ago

7 Replies

10 months post Stem Cell Transplant

It's been a long time since I last posted on here! 10 months ago I was lucky enough to receive donor cells from a 10/10 match. It's been a rollercoaster ride...

It's been a long time since I last posted on here! 10 months ago I was lucky eno...

KAS8

•5 years ago

16 Replies

Any other members put on a lower dose of Ibrutinib after some extreme side effects?

Apparently the Ibrutinib worked so well that my spleen had literally shrunk in days.The only problem was the WBC count going up to 1000s causing my skin to go...

Apparently the Ibrutinib worked so well that my spleen had literally shrunk in d...

Miller1960

•5 years ago

38 Replies

losing white cells when on no cancer treatment

I had pneumonia and I was at 250,000 white cells and I lost 100,000 and doctor thinks it was from infection. Then I gained the 100.000 back in couple weeks...

I had pneumonia and I was at 250,000 white cells and I lost 100,000 and doctor t...

greygirl

•5 years ago

5 Replies

FDA: Beware of Faulty Platelet Counts From B-C Analyzers - Beckman Coulter DxH 600/800/900 instruments recalled

Apologies if this has already been posted. No idea if this is just US issue, but seems that all BC 600/800/900 instruments would be affected....

Apologies if this has already been posted. No idea if this is just US issue, but...

cujoe

•5 years ago

6 Replies

Fatigue

Just been to see my hematologist 2 month check up mentioned being tired lethargic all the time can't work anymore been like this for the last 6 or 7 months...

Just been to see my hematologist 2 month check up mentioned being tired lethargi...

juli65

•5 years ago

16 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for May 2019

Thank you

Newly approved

Anniversary

Vaccination for travelling to Nairobi

Just returned from CLL Society training and a local Patient Power Symposium, Portland, Oregon

effects of strong electromagnetic fields

Fourth Day

Explainer: what’s actually in our blood?

Turmeric - a good supplement?

DEBILITATING FATIGUE

New York City -- CLL Patient Support Group Sunday June 9, 2019 3pm – 5pm

is tylenol safe when on ibrutinib?

IVGH mutation status

CLL Specialist in California

Awaiting FISH results & bone marrow biopsy

I have TP53

new to group

Lump in my left armpit

Thank you Veterans

Sleep Problems

ASH 2018: Dr. Lamanna on combinations for CLL

Emotional at 5 months FCR UK

Is La Croix grapefruit essenced water safe with Ibrutinib?

Strange dizziness - anyone else get this?

Ibrutinib / Venetoclax journey

10 months post Stem Cell Transplant

Any other members put on a lower dose of Ibrutinib after some extreme side effects?

losing white cells when on no cancer treatment

FDA: Beware of Faulty Platelet Counts From B-C Analyzers - Beckman Coulter DxH 600/800/900 instruments recalled

Fatigue

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