Posts - CLL Support | HealthUnlocked

CLL Support

22,516 members • 38,678 posts

All posts for August 2023

Busy week ahead.

Has a call from my macmillan nurse this morning. I am to have a blood transfusion next Thursday. Chemo on Tuesday and a CT scan on Friday. Hoping that all of...

Has a call from my macmillan nurse this morning. I am to have a blood transfusio...

Jacksc06

•8 months ago

41 Replies

Acalabrutinib/COVID/swollen lymph nodes under arm

Hi, I’ve been on Acalabrutinib for almost a year now. I have SLL. Everything had been going wonderfully, my lymph nodes significantly decreased in size, my...

Hi, I’ve been on Acalabrutinib for almost a year now. I have SLL. Everything h...

Tofa80

•8 months ago

6 Replies

Largest real world study of acalabrutinib and ibrutinib over 3 years, shows acalabrutinib has improved discontinuation rates

We've had several posts in the last 24 hours about the U.S. government's plans to negotiate a price for ibrutinib. I mentioned...

We've had several posts in the last 24 hours about the U.S. government's plans t...

AussieNeil

Administrator•8 months ago

2 Replies

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Purple Brown Colored Areas On Skin

About a month ago I noticed an irregular, sort of round/oval, purple and dark brown colored spot on my right wrist area. It was only about an eight of an inch...

About a month ago I noticed an irregular, sort of round/oval, purple and dark br...

wizzard166

•8 months ago

15 Replies

Return of the pillar box decoration.

Took a steady walk to the local shop and noticed this. This is the third or fourth one. Always makes me smile when the unknown person does this.

Took a steady walk to the local shop and noticed this. This is the third or four...

Jacksc06

•8 months ago

15 Replies

Great Change In Part D in 2024

I saw the message today about the proposed price control for ten drugs, one of which is Imbrutinib (Imbruvica). I agree that whether or not these changes ever...

I saw the message today about the proposed price control for ten drugs, one of w...

wizzard166

•8 months ago

8 Replies

Health Insurance Advice

David, my husband was diagnosed with CLL about 2 years ago. He went through a very bad time in June with an strep A infection. He fortunately recovered...

David, my husband was diagnosed with CLL about 2 years ago. He went through a...

Porty14

•8 months ago

13 Replies

Husband nearing completion of O+V/should there be a test for UMRD?

In just a week, my husband will have completed his O+V treatment. I was expecting some test to determine if he achieved UMRD, but none is planned. Is this the...

In just a week, my husband will have completed his O+V treatment. I was expectin...

lisakc1

•8 months ago

17 Replies

Beautiful Sunset

I didn't feel so great today, V + O can suck the energy out of me. Drove up the canyon to do a mini hike but got lost in the beauty of it all and ended up...

I didn't feel so great today, V + O can suck the energy out of me. Drove up t...

skipro

•8 months ago

49 Replies

The price of Imbruvica to go down for U.S. seniors in 2026!

Here’s a CBS News piece about it. Imbruvica is one of the ten drugs on the lists for negotiations! https://youtu.be/dnOzjq31ZuA?si=zVIiyBra6I0s5gzM

Here’s a CBS News piece about it. Imbruvica is one of the ten drugs on the list...

AmericanRonin

•8 months ago

21 Replies

Second Rituximab infusion.

Had my 2nd infusion today. Initial blood test showed low Haemoglobin. It took three attempts to insert the cannula so a bit sore. Antihistamine and steroids...

Had my 2nd infusion today. Initial blood test showed low Haemoglobin. It took t...

Jacksc06

•8 months ago

17 Replies

no more obinutuzimab

Just got a call that they are discontinuing my obinutuzimab infusions. Not totally unexpected. I had 4 infusions this month and had reactions every time. They...

Just got a call that they are discontinuing my obinutuzimab infusions. Not total...

Alex830

•8 months ago

7 Replies

Bloodwork is stable, watchful waiting,stage 1(ish).What's the chance that the bone marrow biopsy will show anything different or additional?

Thoughts? Should I bother? I don't really feel like we have a decent staging. Memorial Sloan Kettering Dr says we can do a bone marrow biopsy and some...

Thoughts? Should I bother? I don't really feel like we have a decent staging. Me...

HeatherW71

•8 months ago

28 Replies

Do I need to worry?

My blood tests results were very good until now, like normal. The consultant even said I was in remission. But the latest blood test is showing HB, RBC, WBC...

My blood tests results were very good until now, like normal. The consultant e...

MalcT

•8 months ago

10 Replies

Recommendation

I am going to Palmsprings, CA. for the winter, any recommendations for an oncologist in the Valley area?

I am going to Palmsprings, CA. for the winter, any recommendations for an oncol...

Lisbon2022

•8 months ago

1 Reply

US names first 10 drugs for Medicare price negotiation

US names first 10 drugs for Medicare price negotiation-By Patrick Wingrove and Michael Erman August 29, 202310:46 AM EDT...

US names first 10 drugs for Medicare price negotiation-By Patrick Wingrove and M...

lankisterguy

Volunteer•8 months ago

6 Replies

Should you avoid caffeine while on Acalabrutinib?

My mom just started her treatment with acalabrutinib. She is a regular 1-2 cups of coffee a day drinker. The pharmacist told my mom to not drink coffee for...

My mom just started her treatment with acalabrutinib. She is a regular 1-2 cups ...

miav1234

•8 months ago

5 Replies

U.S. Gov't to Negotiate Prices for Ibrutinib

https://www.cnn.com/2023/08/29/politics/medicare-drug-price-negotiations/index.html#:~:text=Medicare%20will%20soon%20start%20negotiating%20the%20prices%20of%201

https://www.cnn.com/2023/08/29/politics/medicare-drug-price-negotiations/index.h...

michaeledward

•8 months ago

4 Replies

Serum gamma-glutamyl transferase level

I had a blood test conducted by my GP surgery. One of the test, not my normal profile, was this: Serum gamma-glutamyl transferase level (XaES3) 118 iu/L...

I had a blood test conducted by my GP surgery. One of the test, not my normal p...

RobertCLL

•8 months ago

5 Replies

Your top 7 questions about fall vaccines answered by Your Local Epidemiologist KATELYN JETELINA AUG 29, 2023

Your top 7 questions about fall vaccines answered KATELYN JETELINA AUG 29, 2023...

Your top 7 questions about fall vaccines answered KATELYN JETELINA AUG 29, 2023....

lankisterguy

Volunteer•8 months ago

9 Replies

Similarities/difference with Waldenstroms? ?

I actually have Waldenstroms macroglobulinemia with associated fairly severe neuropathy. I read somewhere it's very similar to CLL with similar or same...

I actually have Waldenstroms macroglobulinemia with associated fairly severe neu...

Hidden

•8 months ago

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Update

Hello again moms white blood count was 1.85 so we just got a shot of zarzio 40 will have one again tomorrow!!! Waiting for some more blood work results...

Hello again moms white blood count was 1.85 so we just got a shot of zarzio 40 w...

Eirinik

•8 months ago

5 Replies

last tablet

hi today ( Monday ) was my last Venetoclax tablets . It has been a 12 month journey with thank goodness not too much drama . I won’t miss the nausea in the...

hi today ( Monday ) was my last Venetoclax tablets . It has been a 12 month jour...

Hilo13

•8 months ago

26 Replies

correction on ADA Post

Spelling correction. Premeditated should be premedicated. Thank you for correcting me, Misty. Now that I think about, may be both will work. Varey

Spelling correction. Premeditated should be premedicated. Thank you for correc...

Varney

•8 months ago

7 Replies

ADA (American Dental Association) protocol on being premedicated before Dental Appointments

Hi All, Since there is so much confusion on whether or not you need antibiotics before a Dental appointment, I decided to send the site (updated January 5,...

Hi All, Since there is so much confusion on whether or not you need antibiotics...

Varney

•8 months ago

7 Replies

Just took my first Pirtobrutinib pill today

I can’t thank my doctor and Upenn enough for acting so quickly in getting pirto approved by insurance company and getting me co-pay assistance. The drug...

I can’t thank my doctor and Upenn enough for acting so quickly in getting pirto...

ReneeSusan

•8 months ago

14 Replies

Beyond the Diagnosis: Surviving and Thriving with CLL / SLL

Beyond the Diagnosis: Surviving and Thriving with CLL / SLL by Heather Wolfe, MD Assistant Professor, Department of Internal Medicine Director of CLL...

Beyond the Diagnosis: Surviving and Thriving with CLL / SLL by Heather Wolfe, ...

lankisterguy

Volunteer•8 months ago

7 Replies

CLL AND RA

About five years ago I was diagnosed with CLL, a high WBC but it is steady, I am getting no treatment, just monitoring for now. This month I was diagnosed with...

About five years ago I was diagnosed with CLL, a high WBC but it is steady, I am...

WLF3

•8 months ago

1 Reply

Immunocomprised and suddenly have an asymptomatic Covid infection!

My husband has CLL and is in treatment (finished Obinutuzumab, now on Venetoclax). He has had two pretty severe Covid infections; first one in June 2022,...

My husband has CLL and is in treatment (finished Obinutuzumab, now on Venetoclax...

keikikumu

•8 months ago

6 Replies

Curious

Hi wondering if anyone has had groin discomfort in their CLL journey, l have for a couple of weeks on and off,l do gardening when fatigue allows me too so...

Hi wondering if anyone has had groin discomfort in their CLL journey, l have for...

sun_flower

•8 months ago

11 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for August 2023

Busy week ahead.

Acalabrutinib/COVID/swollen lymph nodes under arm

Largest real world study of acalabrutinib and ibrutinib over 3 years, shows acalabrutinib has improved discontinuation rates

Purple Brown Colored Areas On Skin

Return of the pillar box decoration.

Great Change In Part D in 2024

Health Insurance Advice

Husband nearing completion of O+V/should there be a test for UMRD?

Beautiful Sunset

The price of Imbruvica to go down for U.S. seniors in 2026!

Second Rituximab infusion.

no more obinutuzimab

Bloodwork is stable, watchful waiting,stage 1(ish).What's the chance that the bone marrow biopsy will show anything different or additional?

Do I need to worry?

Recommendation

US names first 10 drugs for Medicare price negotiation

Should you avoid caffeine while on Acalabrutinib?

U.S. Gov't to Negotiate Prices for Ibrutinib

Serum gamma-glutamyl transferase level

Your top 7 questions about fall vaccines answered by Your Local Epidemiologist KATELYN JETELINA AUG 29, 2023

Similarities/difference with Waldenstroms? ?

Update

last tablet

correction on ADA Post

ADA (American Dental Association) protocol on being premedicated before Dental Appointments

Just took my first Pirtobrutinib pill today

Beyond the Diagnosis: Surviving and Thriving with CLL / SLL

CLL AND RA

Immunocomprised and suddenly have an asymptomatic Covid infection!

Curious

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