Acalabrutinib

[kitchengardener2]

Good morning folks.

My consultant, Dr Munro rang yesterday. All good, I had had a CT scan a few weeks ago to check progress of lymph nodes and spleen. She said that the CT scan just showed a small ovarian cyst not changed from last time and all lymph nodes had reduced considerably. White cells are down to 19 and Heamaglobin 116 and normal. She doesn't want to see me/or speak to me for another 3 months. I will post a more detailed blood result when I get the printout of my latest blood numbers.

The ovarian cyst, which unbeknown to me has been there for some years without causing problems, this is on my left side. I did mention that I have low level discomfort on my lower right side. Dr Munro said the CT scan hadn't shown anything untoward. It is liveable with but obviously I would rather it wasn't there. I am going to try and contact my GP regarding this but just wondered if any other ladies have had anything like this?

What I am unable to determine is that whilst knowing that I don't seem to have antibodies against Covid19 BUT I would be interested to know if I am likely to have antibodies for other infections which my body may recognise. It is my own feeling that I probably had CLL for years before it was diagnosed. I travelled all over the world and I dearly want to resume my travels (obviously with extreme care now post pandemic).

Sorry for waffling but I would be interested in your views.

I still feel really well and want to continue this way. I am 69 years old.

[PaulaS Volunteer]

Great to hear your bloods are doing OK, and that you're feeling well too!

About the antibodies - I would imagine we have lots of different antibodies for various infections we've had in the past, but I'm not sure how long they last or how much being on CLL treatments would affect them...

I'm aware that tests can be done, looking for various antibody levels, but I think they'd be expensive and different tests are probably needed for different antibodies. Doubt if the NHS would do it.

I don't know though - just speculating. Maybe someone else knows more about the science of this.

I hope you'll be well enough and feel safe enough to continue your travels in future.

Paula

[kitchengardener2 in reply to PaulaS]

Thanks Paula x stay safe xx

[Wendy328]

It’s always good news to get a good scan. I have one coming up 2/24. I am feeling okay, but I still get anxious. My blood work always results in high numbers, climbing every visit. My oncologist recently retired and I am in limbo as far as a replacement. Right now the cancer center is temporary Dr. I go every 3months hopefully I will see the same one this time on March 4th. I am 72 on W&W for 4 years.

[Peggy4]

Good to hear you’re doing well. I certainly had CLL a few years before diagnosis. I worked in both a school and hospital before and since diagnosis. I did get many chest infections which led me to investigations but otherwise I carried on life as normal. I would imagine our bodies build up many antibodies against different things in that time but of course covid is a different Beast.Peggy

[kitchengardener2 in reply to Peggy4]

Thanks Peggy, stay safe xxx

[BaseballGardener]

Having CLL means your body has changed, you have a weakened immune response system. Your body may not be able to defend itself as well now, both for new infections, or T-cell response to prior infections. I would definitely consult with a medical expert prior to traveling. You may need to prepare more for the places you wish to visit, so you better understand the public health issues currently ongoing at those locations. Unfortunately, this disease is not curable, it is only managed. You must learn to live with the condition. The good news is that you are aware of your condition and understand the situation; that's half the battle. Now, you have to adapt to live with your new condition. Best Wishes, you will have a great time traveling to wherever you want to go, just be prepared.

[KelseyNoelle]

Glad to learn your CT scan was good! How long have you been on Acalabrutinib? My Dr says antibodies may or may not be affected by the drug. Should be less after treatment esp when achieving remission and having more good cells in your blood.