It’s been quite a while since I’ve visited the forum, my bad.
My last visit to my consultant revealed that it’s time to start treatment. This will be delayed however until the horrendous mouth infection I have had for 6 weeks has gone. It’s not the best way to lose weight, I’ve lost 16kg in that time, but the banana and water diet is very effective.
Anyway I wanted to see if anyone had an opinion regarding Acalabrutinib, the latest option I’ve been offered. How are the side effects etc.
I need to limit my travels to and from hospital as I have very little help in getting there.
Oh, @MikeW I cannot help with Acalabrutinib.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses
Great to hear from you again, but sorry about the circumstances.
I am more worried about you currently.
Personally, not medically, it does not sound to me as if you are in any fit state to talk about starting treatment.
Perhaps talk to your specialist nurse, Consultant or GP about any supplement drinks that might build you up a bit.
I think anything teeth wise is horrible and all consuming.
Perhaps it is a good time to write down all your fears, questions and practicalities for your next hospital appointment.
Really be kind to yourself and please do keep posting how you are
Dear @MikeW,
Welcome back to the forum. I am so sorry you are having a rotten time with your mouth, this must be miserable for you. I agree with @Erica it would be good to get some build up drinks to help maintain your nutrition. Have you a treatment plan for your mouth?
Sorry to hear your Chronic lymphocytic leukaemia (CLL) is requiring some treatment, Acalabrutinib is quite regularly used now in Chronic lymphocytic leukaemia (CLL) , this is a tablet treatment so hopefully you can be managed on the medication away from hospital, although I believe you will need frequent blood test monitoring initially. Will your nurse specialist or Doctor go through the side effects etc before you begin treatment?
Best Wishes
Heidi J (Support Services nurse)
I can always count on you for your kind words and support.
I must admit the past few months have been a real struggle. My mouth problems started with an abscess and lost a tooth, the infection then spread to completely covering the roof of my mouth in ulcers. This of course made eating and drinking very painful, hence my weight loss.
To cap it all I now have to get some facial skin lesions checked at hospital later this week. I’ve had small lesions on my face for many years, sun damage from living in Aden for 2 years back in 1958. These were usually treated properly but my GP doesn’t like the look of a new one. I know secondary cancers are possible so this is just a precaution.
I’ll drop in to the forum more frequently from now on and keep you updated.
I’ve got the information sheet for this treatment, I was just wondering if anyone had experience of it and what I might look forward to in the side effects.
Unfortunately when I moved to where I live now, joining a dental practice was not possible due to the way NHS Dentistry works. I can only get treatment on referral but even then there is nothing locally.
Oh @MikeW yes, I also have Chronic lymphocytic leukaemia (CLL) diagnosed 2003,
Since 2016 I have had 2 skin cancer patches on the top of my head treated
The first op involved a skin graft as well, both were done under local anesthetic
I have also had odd small patches on my face which were pre cancerous and treated often with what I call a freezing gun. My GP seems to enjoy using it rather too much in my book!!!
I had at least 6 teeth out in one go in 2006 due to never ending infections by a private dentist, no other dentists would touch me. the dentist worked with my consultant and GP, I was on antibiotics, before during and after
After my mouth healed, and I got used to wearing upper and lower plates, then I have not looked back. I lived on tinned custard and ice cream.
When I went back to work my face looked as if I had done 10 rounds with Mike Tyson. and my boss would not let me see clients face to face!!!
You are not alone, be ever so kind to yourself and please do drop in more frequently and keep us updated
I’ve just returned from hospital after having a biopsy procedure on my mouth. Because I’ve gone through 5 courses of antibiotics and still no results they are of the opinion that my problem isn’t due to an abscess I had but the leukaemia has gone into the roof of my mouth. If that is the case, bring on chemotherapy.
Oh @MikeW , you sound a lot more calm that I would be.
How long have you got to wait for your biopsy results?
Yes, if it is the leukaemia bring on the chemotherapy.
Please do let us know the result and how you are getting on.
I will be thinking about you and really look after and be kind to yourself
I’ve finally got the results of my palette biopsy, it’s Non Hodgkins Lymphoma.
This changes the plan going forward and I’m starting my 1st chemo (R-CHOP) next Friday.
That is if I get through the battery of tests they have lined up first, including a PetScan at Addenbrookes.
Wish me luck.
Gosh @MikeW how are you feeling?
Suddenly being bombarded by a battery of tests sounds pretty scary to me, and it would be out of my control which I hate.
It has brought back a lot of feelings for me as I have had 20 appointments and more coming this year for other non blood cancer conditions.
I have only just kept my head above water under a mound of medical notes and paperwork and I have had a few appointments at well known hospitals which feels even worse to me.
Be kind to yourself and keep life as simple as you can, you have a lot going on and please do keep posting when you can I will be thinking about you.
I started treatment on Thursday for my Non-Hodgkin lymphoma (NHL), brought forward a week. After an initial start to the treatment I had an allergic reaction to the medication and they had to stop. I’m on Rituximab, Cyclophosphamide, Doxorubuicin, Vincristine and Prednisone. I was then admitted into the MacMillan ward so that they could monitor me and administer fluids. Friday the treatment continued at a slower pace which I successfully tolerated. So my 6hr visit turned into a 2 night stay.
I cannot praise the staff at the MacMillan Unit, West Suffolk Hospital, Bury St. Edmunds highly enough, even the food was delicious.