Posts - CLL Support | HealthUnlocked

CLL Support

22,611 members • 38,830 posts

All posts for November 2020

How do I find one of my post's

Hi any ideas how I find these I am seeing the consultant today down in Oxford and when i posted my blood results recently some said something about my mean...

Hi any ideas how I find these I am seeing the consultant today down in Oxford an...

TheFlyer

•4 years ago

4 Replies

Limited Duration Therapies and MRD (Measurable Residual Disease)

Hi, We are asking for patients and caregivers to participate in a survey which will help us learn about knowledge, attitudes, and preferences about MRD...

Hi, We are asking for patients and caregivers to participate in a survey which w...

bkoffman

CLL CURE Hero•4 years ago

27 Replies

To our Military Veterans: Thank You for Your Service!

To our Military Veterans: Thank You for Your Service! In appreciation of our military veterans’ service to our country, we provide this link to a very...

To our Military Veterans: Thank You for Your Service! In appreciation of our mi...

bkoffman

CLL CURE Hero•4 years ago

2 Replies

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

Newly Diagnosed Age 49

I’ve been recently diagnosed with CLL at age 49. Having read several posts that are suitably empathetic, I have no end of questions coupled with fear. I have a...

I’ve been recently diagnosed with CLL at age 49. Having read several posts that ...

Nell2009

•4 years ago

42 Replies

Working through Covid?

Hi all, I was diagnosed back in 2015 and had 6 months of chemo back in 2016 , all good results and bloods still good! I am a nurse and work for the NHS on a...

Hi all, I was diagnosed back in 2015 and had 6 months of chemo back in 2016 , al...

Megellen

•4 years ago

9 Replies

SUGGESTIONS?

I started treatment (B+R) at the end of this past January for 6 months, the results were very good and my oncologist said he would probably start me on a 2...

I started treatment (B+R) at the end of this past January for 6 months, the resu...

laldoroty

•4 years ago

6 Replies

Cured !!

Morning All .This is my first day for two years I have not had to take Ibrutanib and Venetoclax ,,I have been cured !🤞it last but we must think positive .It...

Morning All .This is my first day for two years I have not had to take Ibrutanib...

Workers

•4 years ago

26 Replies

Once this vaccine becomes available will it be suitable for those of us with CLL? Especially if we are on a treatment like ibrutinb

Cll and the pfizer vaccine

tozer

•4 years ago

3 Replies

My new MD Anderson Doc

I just talked to my new doc. What a thrill to have a specialist. He said I am low risk with just 13q deletion. I kind of new this but other doctors never said...

I just talked to my new doc. What a thrill to have a specialist. He said I am lo...

showdog

•4 years ago

16 Replies

Vaccine candidate was found to be more than 90% effective in preventing COVID-19 in participants without evidence of prior SARS-CoV-2 infect

#CLLSociety Pfizer and BioNTech’s big news this week of a promising novel (not "live") “RNA” vaccine against COVID-19 set the CLL community abuzz with hope....

#CLLSociety Pfizer and BioNTech’s big news this week of a promising novel (not "...

bkoffman

CLL CURE Hero•4 years ago

15 Replies

Simply Curious

I know we can go for years on W&W. I'm wondering what the longest time frame someone has gone once starting treatments? Does anyone know? I'm just curious.....

I know we can go for years on W&W. I'm wondering what the longest time frame som...

Oceanbly

•4 years ago

16 Replies

VITAMIN K2 & CLL

Vitamin K2 and CLL. Anyone got an opinion on Vitamin K2 for CLL treatment? Digging around the web i found this. Ordered some on Amazon...

Vitamin K2 and CLL. Anyone got an opinion on Vitamin K2 for CLL treatment? Digg...

Hidden

•4 years ago

50 Replies

Treatment time... today!

Today I head to the hospital for 3-6 days to receive my first treatment of Obinutuzimab (Gazyva). You may remember I was struggling with the treatment...

Today I head to the hospital for 3-6 days to receive my first treatment of Obinu...

NaturalWaze

•4 years ago

26 Replies

New Imbruvica patient questions.

Day 39 on Imbruvica. Four Rituxan infusions this past month didn’t move my numbers much. Oncologist says we will forego more infusions and rely on Imbruvica....

Day 39 on Imbruvica. Four Rituxan infusions this past month didn’t move my numbe...

AtTheBeachInDE

•4 years ago

4 Replies

Cracked nails

I would like to thank the person or persons who suggested to use Hard As Nails to help nails from cracking when using Imbruvica/Ibrutinib. I started using it...

I would like to thank the person or persons who suggested to use Hard As Nails t...

Kmegood

•4 years ago

5 Replies

Diagnosed with CLL at 27 years old.

Hi all, I am new to this support group and wanted to know if there was anyone out there with a similar situation to me. I was diagnosed with CLL (RAI stage...

Hi all, I am new to this support group and wanted to know if there was anyone o...

ALS27

•4 years ago

34 Replies

Pentamidine nebulisers

For those on Pentamidine nebuliser treatment - is anybody able to have this treatment at home ?

For those on Pentamidine nebuliser treatment - is anybody able to have this trea...

Grannajan

•4 years ago

6 Replies

Covid/Ibrutinib?

Is anybody tested positive for Covid or covid antibodies being under Ibrutinib or acalabrutinib?

Is anybody tested positive for Covid or covid antibodies being under Ibrutinib...

Mik_

•4 years ago

Be the first to reply

My 3 to 4 weeks on Ibrutinib

Hi all hope to find you well, now it seams that my side effects are very easy manageable, since last post i got tested for covid19 that came negative and I...

Hi all hope to find you well, now it seams that my side effects are very easy m...

2017cll

•4 years ago

2 Replies

Methylprednisolone and campath?

Methylprednisolone and campath??? Has anyone been on this treatment as I would really appreciate if anyone could let me know how they felt / side effects??

Methylprednisolone and campath??? Has anyone been on this treatment as I would ...

Josieg29

•4 years ago

4 Replies

I'm new here. Anyone experiencing blood glucose elevated on low dose (70mg/daily) ibrutinib?

Diagnosed 4-2013 with CLL (trisomy 12). Started first line treatment on 420mg doses/day in 12-16 (white blood cells at 460,000) until extreme drug toxicity in...

Diagnosed 4-2013 with CLL (trisomy 12). Started first line treatment on 420mg do...

Buck1000

•4 years ago

2 Replies

Monoclonal antibodies from Cuba and India.

ITOLIZUMAB a monoclonal antibody developed by CIM in Cuba and BIOCOM in India is for support of geriatric patients and has now been authorized for clinical...

ITOLIZUMAB a monoclonal antibody developed by CIM in Cuba and BIOCOM in India is...

janvog

•4 years ago

4 Replies

Unusual condition

Haven't written in a while. Had interesting development. Had sore on my ankle that looked like a bug bite. Got red and painful. Went to family doc, thought it...

Haven't written in a while. Had interesting development. Had sore on my ankle th...

LinnyPooh

•4 years ago

11 Replies

Reducing ibrutinib for 14 days

I have a stubborn case of eppidemis which although no longer swollen etc still gives me trouble with painful like cysts so my doctor and consultant have come...

I have a stubborn case of eppidemis which although no longer swollen etc still g...

cartwheels

•4 years ago

4 Replies

Shielding not an option.

Hello ... My employers are saying they can't furlough me as they don't meet the criteria, no part of our business has suffered due to the pandemic, in fact we...

Hello ... My employers are saying they can't furlough me as they don't meet the ...

mfc86

•4 years ago

17 Replies

What symptoms of CLL do I really have to worry about?!

Pretty new to CLL, on Watch and Wait. I am struggling to work out exactly what symptoms I have to really worry about! Was blown away to get the diagnosis...

Pretty new to CLL, on Watch and Wait. I am struggling to work out exactly what s...

accordio

•4 years ago

14 Replies

Diuretics and Ibrutinib

Wondering if anyone is on diuretics and Ibrutinib, lasix, Aldactone, HTCZ, and your thoughts on this. Started diuretic for blood pressure, drinking 80 ounces...

Wondering if anyone is on diuretics and Ibrutinib, lasix, Aldactone, HTCZ, and y...

Davidcara

•4 years ago

3 Replies

Venetoclax

It looks very likely I will switch from taking Ibrutinib to taking Venetoclax. While Venetoclax is a tablet, if I start it, apparently each week for the first...

It looks very likely I will switch from taking Ibrutinib to taking Venetoclax. W...

Dym230109

•4 years ago

43 Replies

A person with leukemia, sheds coronavirus for 70 days without symptoms

https://www.livescience.com/woman-sheds-infectious-coronavirus-70-days.html

zaax

•4 years ago

7 Replies

Shielding note.

Is their anyone who hasn't received a sheilding letter ? My GP as assured me that I am on the patient shielding list and I will receive one I need one for work...

Is their anyone who hasn't received a sheilding letter ? My GP as assured me tha...

mfc86

•4 years ago

18 Replies

Posts - CLL Support | HealthUnlocked

CLL Support

All posts for November 2020

How do I find one of my post's

Limited Duration Therapies and MRD (Measurable Residual Disease)

To our Military Veterans: Thank You for Your Service!

Newly Diagnosed Age 49

Working through Covid?

SUGGESTIONS?

Cured !!

Once this vaccine becomes available will it be suitable for those of us with CLL? Especially if we are on a treatment like ibrutinb

My new MD Anderson Doc

Vaccine candidate was found to be more than 90% effective in preventing COVID-19 in participants without evidence of prior SARS-CoV-2 infect

Simply Curious

VITAMIN K2 & CLL

Treatment time... today!

New Imbruvica patient questions.

Cracked nails

Diagnosed with CLL at 27 years old.

Pentamidine nebulisers

Covid/Ibrutinib?

My 3 to 4 weeks on Ibrutinib

Methylprednisolone and campath?

I'm new here. Anyone experiencing blood glucose elevated on low dose (70mg/daily) ibrutinib?

Monoclonal antibodies from Cuba and India.

Unusual condition

Reducing ibrutinib for 14 days

Shielding not an option.

What symptoms of CLL do I really have to worry about?!

Diuretics and Ibrutinib

Venetoclax

A person with leukemia, sheds coronavirus for 70 days without symptoms

Shielding note.

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