CLL About to start treatment

Hi Star 22 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups.

I don’t have Chronic lymphocytic leukaemia (CLL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL eventually reaching Stage 4a in late 2013 so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well.

Well done on being on Active Monitoring (Watch and Wait) for 7 years, this demonstrates the slow growing nature of CLL.

In Heamatology circles consultants often class CLL in the same   group as many slow growing Low-grade non-Hodgkin lymphoma,,,, yes that sounds confusing especially as the word Leukaemia is used…… but blood cancers are generally complicated.

Acalabrutinib is an effective drug and used across a number of cancer types, normally taken in tablet form so no long sits in hospital on an IV.

I had a few oral drugs in my early days and did well with them, actually worked in a demanding teaching job while zi was on them up until I retired….. then as my condition developed I had to have done more demanding treatments but I turned 67 back in November and am living as good a life as any healthy 67 year old can be living.

These types of drugs can play with your BP so you will find that most blood cancer patients get good at monitoring and understanding their BP……. but don’t over think this. I have been doing this for many many years and on a few occasions things were ‘off’ but these were mainly due to having infections which were quickly dealt with by calling my clinical team or 111 during out of hours.

If you don’t have one already, you may also want to get a digital in-ear thermometer as well. Developing an infection can be one of the main Side Effects of Treatments so some care with regards to coming in contact with infection risks like people with coughs etc needs to be considered.

Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

You can also do a site word search so do put Acalabrutinib into the Search Tool near the top, hit ‘Anywhere’ and this will bring up the older posts and again hit reply to see if the members are still using the site

Always around to help more or just to chat ((hugs))

Welcome to this CLL forum.

Your situation is EXACTLY the same as mine.

I was in watch and wait for many years, but eventually late last year, it was decided that my spleen was just too big to ignore.

Thus I am now on Acalabrutinib.

Unlike the first generation of this type of drug, Ibrutinib, the side effects of Acalabrutinib are considerably less.

Ibrutinib is well known to produce some heart side effects notably Atrial Fibrillation, which is rare when taking Acalabrutinib.

Thus blood pressure monitoring is not always required unless that patient has other medical issues.

How to start taking Acalabrutinib.

For the first two weeks take the acalabrutinib with the drug Allopurinol to protect the kidneys from the toxins of the many
dead b-cells and drink LOTS of water.

After two weeks stop the Allopurinol and add Co-Trimoxazole and Aciclovir.

The Co-Trimoxazole is a dual purpose drug which protects against bacterial infections and in particular lung infections such as pneumonia. 

Aciclovir is to protect against the shingles virus.

Unfortunately those of us with CLL do have a weak immune system and thus these two extra drugs are simple protective measures.

UNDER NO CIRCUMSTANCES should you now eat Grapefruit, seville oranges  or star fruits as these will badly and sometimes dangerously affect how the acalabrutinib drug works in the body.

You might wish to Google Healthunlocked where you will find a massively supported CLL forum with many useful help pages.

Any further questions, do not hesitate to ask, we are here to help..

Good luck

Dick

PS Just so that you know.

There are now at least 3 new drugs to treat CLL, thus in a few years IF the acalabrutinib stops working there are quite a few alternative treatments...  Always nice to know..

Dick