Posts - CLL Support | HealthUnlocked

CLL Support

23,253 members•39,948 posts

All posts for August 2024

O&V Aciclovir and Warts Part 2

To this massive improvement Julian

TheFlyer

•2 months ago

1 Reply

Started O plus V a few weeks ago. i have a question

I feel great after a few infusions and am starting pills next week. My bloodwork was normal for the first time in 10 years. I seem to be nervous about...

I feel great after a few infusions and am starting pills next week. My bloodwor...

elm1

•2 months ago

27 Replies

ALC question

i have what seems to me a dumb question. I see lots of references to ALC in CLL posts. In reviewing my lab results I don’t see any results for ALC. can someone...

i have what seems to me a dumb question. I see lots of references to ALC in CLL ...

Lind29

•2 months ago

5 Replies

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Covid in the house

I have just started Zanubrutinib 3 months ago and I don't want to pause it at this point, but there is covid in my house and I'm worried I might get it. Are...

I have just started Zanubrutinib 3 months ago and I don't want to pause it at th...

johnliston

•3 months ago

4 Replies

Richter's and Novel Treatments/Combinations

We've had a few members post about Richter's recently so I thought it might be time for a bit of an update on new treatments. In these reports there is not a...

We've had a few members post about Richter's recently so I thought it might be t...

Jm954

Administrator•3 months ago

26 Replies

possible secondary diagnosis?

Hi all, Been a long time since ive logged in. Bf has been NED for almost 3yrs!! And he stopped taking imbruvica for the last 2 yrs or so. …Back in December...

Hi all, Been a long time since ive logged in. Bf has been NED for almost 3yrs!...

Beefcakesgirl

•3 months ago

4 Replies

High white blood cell count

I am on watch and wait. My GP did a blood test and it showed my wbc as 34.5 all it said was abnormal but expected. I’m not sure this is passed on to my...

I am on watch and wait. My GP did a blood test and it showed my wbc as 34.5 all ...

21Bedlam21

•3 months ago

19 Replies

Melanoma

I got a double whammy diagnosis 10 days ago. My CLL was diagnosed when getting a mole removed which turns out to be a malignant melanoma. Am going in for some...

I got a double whammy diagnosis 10 days ago. My CLL was diagnosed when getting a...

Mokoia

•3 months ago

1 Reply

Diagnosed with Richters

My history is a CLL diagnosis around Sept of 2016. I started the Ibrutinib/Venetoclax trial at MDA in Jan 2017 achieving MRD U in April 2019. Clear sailing...

My history is a CLL diagnosis around Sept of 2016. I started the Ibrutinib/Vene...

Louie_CC

•3 months ago

19 Replies

newly diagnosed

I’m newly diagnosed CLL. Very new! It’s been 3 days! 😀. My emotions are crazy, I go from depression, to being ok. I just need a support group. Also at the...

I’m newly diagnosed CLL. Very new! It’s been 3 days! 😀. My emotions are crazy, ...

Hidden

•3 months ago

47 Replies

Hello from Nova Scotia

Hey I often wonder if it's beneficial to only be 57 when diagnosed..I'll be 59 in March ..I read that CLL usually afflicts elderly people..had more blood work...

Hey I often wonder if it's beneficial to only be 57 when diagnosed..I'll be 59 i...

CountryHarbour

•3 months ago

11 Replies

Continued Journey

I’m now at day +52 from my BMT. Two weeks ago I started experiencing symptoms of Graft VS Host Disease. These were sores in the mouth and then a rash starting...

I’m now at day +52 from my BMT. Two weeks ago I started experiencing symptoms o...

FiArt12X

•3 months ago

8 Replies

Mind/Emotion/Body connection

Hi, folks. I haven't been on this site for quite awhile, as I was (justly or not) put off by so much negative reaction to the concept that there is, science...

Hi, folks. I haven't been on this site for quite awhile, as I was (justly or not...

ybird

•3 months ago

11 Replies

Apparent PD on Ven

Hi I had 3 rounds FCR in Winter 2018 stopped for Neutropenia. My doc did NO testing for mrd or even flow. Ignorance was bliss til release 2 years......

Hi I had 3 rounds FCR in Winter 2018 stopped for Neutropenia. My doc did NO ...

skipro

•3 months ago

4 Replies

Acalabrutnib

I have read all about people talking about side effects ranging from fatigue, headache, diarrhea and other maladies. I just started taking acalabrutnib two...

I have read all about people talking about side effects ranging from fatigue, he...

1reb

•3 months ago

6 Replies

Amazing results from Brukinsa

I was diagnosed in 2020 with CLL/SLL. I had a 6.3 cm lymph node excised for biopsy. Following diagnosis I underwent radiation treatments to my axilla and...

I was diagnosed in 2020 with CLL/SLL. I had a 6.3 cm lymph node excised for biop...

akirsch973

•3 months ago

9 Replies

When to take Medication

My problem is..... I take loads of different meds for CLL & IPF also for gout, diabetes and heart. They all have side effects I know, but recently I have been...

My problem is..... I take loads of different meds for CLL & IPF also for gout, ...

Suzie42

•3 months ago

17 Replies

Obinutuzumab and Venetoclax update

Hi All I started on the 9th of July and just commenced the start of Cycle 2. Initially I was focused on have some sort of reaction to the infusion but...

Hi All I started on the 9th of July and just commenced the start of Cycle 2. I...

TheFlyer

•3 months ago

22 Replies

Spirulina

I bought a big bag of this to add to my breakfast smoothie (strawberries, raw broccoli, nuts, flaxseed), been enjoying it then read may be good or bad as it...

I bought a big bag of this to add to my breakfast smoothie (strawberries, raw br...

Research123

•3 months ago

8 Replies

Benzodiazepine and CLL

Has there been any studies or research that shows Benzodiazepine (Ativan) to be the cause of CLL ?

Has there been any studies or research that shows Benzodiazepine (Ativan) to ...

Sillysand

•3 months ago

7 Replies

Patiently awaiting my marrow BX results with a calming sunset in my neighborhood.

Awe, due to heavy rains could not get out to the mountains to hike, but I caught this beauty just around the block from my condo when I went for an evening...

Awe, due to heavy rains could not get out to the mountains to hike, but I caught...

skipro

•3 months ago

24 Replies

CAR T & Super CAR T cell Therapy, Moving at the Speed of Light

Hi All, Great video!!! What are your thoughts?...

bagelstreet225

•3 months ago

13 Replies

mouth sores

Diagnosed barely 2 months ago and on brukinsa for a month now. Tolerated fairly well so far except for mouth sores. Used magic mouthwash for10 days and cleared...

Diagnosed barely 2 months ago and on brukinsa for a month now. Tolerated fairly ...

Reetywell71

•3 months ago

10 Replies

End of term report!

So I just heard from the CNS that I have no evidence of CLL cells, sensitivity 0.01%. I am not good at interpreting the 0.01% thing but this sounds a good...

So I just heard from the CNS that I have no evidence of CLL cells, sensitivity ...

Steffi50

•3 months ago

32 Replies

daily Ciallis

I’m on w and w no symptoms Wondering if taking daily 2.5 mg ciallis is ok Tia

I’m on w and w no symptoms Wondering if taking daily 2.5 mg ciallis is ok Tia...

Barclays

•3 months ago

5 Replies

Fall 2024 Covid Vaccine

Has anyone heard the release date of the Fall covid booster in the US? i am traveling and would like to time. I found nothing definitive on the CDC website...

Has anyone heard the release date of the Fall covid booster in the US? i am t...

ElMaga

•3 months ago

4 Replies

Confused

I am horrid at sharing my history and/or feelings whether it be here in writing or in person, so please bare with me. I was diagnosed with CLL in 2008 and...

I am horrid at sharing my history and/or feelings whether it be here in writing ...

Grannymadeit

•3 months ago

8 Replies

CLL Progressing To Next Stage

Today I had a phone consult with my haematologist who informed me CLL has progressed and that at my next appt in 6 weeks’ time he’d discuss with me my options...

Today I had a phone consult with my haematologist who informed me CLL has progre...

Spondonhouse

•3 months ago

18 Replies

Acute Myeloid Leukemia

Does there exist an Acute Myeloid Leukemia site in Health Unlocked? If so could someone share the website. I have someone who needs to know asap. Thank You...

Does there exist an Acute Myeloid Leukemia site in Health Unlocked? If so could ...

Test_Tech

•3 months ago

7 Replies

the bad prognostic markers

I know there are multiple posts like this but I just need some help and guidance. My dad just got his FISH test back and it’s all the bad...

I know there are multiple posts like this but I just need some help and guidance...

anongirll1927

•3 months ago

5 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2024

O&V Aciclovir and Warts Part 2

Started O plus V a few weeks ago. i have a question

ALC question

Covid in the house

Richter's and Novel Treatments/Combinations

possible secondary diagnosis?

High white blood cell count

Melanoma

Diagnosed with Richters

newly diagnosed

Hello from Nova Scotia

Continued Journey

Mind/Emotion/Body connection

Apparent PD on Ven

Acalabrutnib

Amazing results from Brukinsa

When to take Medication

Obinutuzumab and Venetoclax update

Spirulina

Benzodiazepine and CLL

Patiently awaiting my marrow BX results with a calming sunset in my neighborhood.

CAR T & Super CAR T cell Therapy, Moving at the Speed of Light

mouth sores

End of term report!

daily Ciallis

Fall 2024 Covid Vaccine

Confused

CLL Progressing To Next Stage

Acute Myeloid Leukemia

the bad prognostic markers

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