Maria G63
Posted by

And so it begins.....

Maria G63
Posted by
27 Apr 2016

So I have CLL and it needs treatment which involves 6 months of chemotherapy.

So a regular 3 monthly pattern formed, blood tests, check up and chat to see how I was, all usually took 10 mins,apart from a slight change in blood results and a few more obvious nodes~ no big deal.
October 2015 and my blood results had taken a dramatic downturn. I think I knew things were not right as I was so incredibly tired, my neck nodes stuck out like golf balls and were being noticed by other people and I was constantly covered in bruises from the slightest knock.The Consultant told me the time had come to start considering treatment. I asked if we could leave it till after Christmas to which she reluctantly agreed, on the understanding that as early as possible I would need to commence treatment. She also asked if I would speak to the research nurse and possibly consider being part of a clinical trial called Flair. I took all the information home to have a read and discuss with my family, Ahhh yes here we go again, another family meeting....
We had a great family Christmas all together and as agreed I went back in January to discuss the next step. Id decided to go with the clinical trial.My kids were very divided but at the end of the day it had to be my decision. Things started moving quite fast as my blood results were not great. I had to firstly undergo a bone marrow biopsy and I am not going to sugar coat it, it was uncomfortable and as painful as I expected. I also had another Ct scan and lots more bloods all doubled as part of the clinical trial. I went back to work and tried to carry on as normal. We had a few days break to Paris booked to see my partners family so that was a distraction, until the day before we were due to fly and they phoned to say I was to come in! I was packed flights paid etc etc and I really wanted the break as it would probably be the last one for a while. Id already had to cancel a holiday to Greece in the May. After a bit of bartering they agreed to let me go and I was to come in the day after I got back.
February 22nd 2016 ~ Commence Chemotherapy of 6 treatments. 5 days of Intravenous Rituximab and oral Fludara + Cyclophosphamide followed by a 23 day  break to recover. ((A bit about Rituximab~ Rituximab is a monoclonal antibody against the protein CD20, which is primarily found on the surface of immune system B cells. Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas and leukaemias.)) Day 1 and 2 are spent on the cancer day unit having the intravenous over 5 hours. Days 3,4 & 5 can be taken at home.  

   How did I feel? Sick? Very. I was however given lots of anti sickness to help. Tired? Very. Loss of appetite? I lived on lemonade and pineapple chunks for a week, everything tasted like metal. Lots of other symptoms eg running to loo a lot! very tearful, hot, cold happy then snappy but after nearly 2 weeks I started to feel ok, then a bit better, then I felt like going out so I did. For the next 10 days I felt great, then it was time to start again....March= same routine + same post chemo symptoms. 10 to 12 days of feeling rubbish etc followed by gradually feeling better to feeling pretty ok then start again. April=same routine alas much worse post chemo, from day 2 I felt really sick, sicker than usual, running a very high temp spending a lot of time in the toilet lost 3 kilos in a few days... I'm 4 days post chemo this cycle and just about keeping down lemonade but I could really devour a sweet chili chicken wrap which is on my "to have" list when I feel a bit better.
 I'm halfway through treatment and although I feel a bit rubbish right now, I know its going to pass so I find making plans to do something on the good days help. Go window shopping, walk along our lovely seafront, have a coffee with friends, anything that brings a bit of normality to daily life just for a while.

So its my 53rd birthday 22nd May, its also day 5 of my 4th cycle, I doubt I will be out partying but heres hoping the longterm outcome will be plenty more birthdays to celebrate.......



Dear Maria G.

A belated happy birhday, and I also have two friends who share the same birthdate so you must be a special person.   I am 61 and living in Portugal. Thank you for sharing your experiences and feelings.  I completely understand what you are going through , as I was diagnosed with MBL in 2010 and it morphed into CLL thjis year... I was doing fine on W&W then... whammo.  After an ear infection I never really got over the fatigue and anemia was getting worse to the point where the hospital (here in Lisbon) decided to  start me on 6 treatments of chemo.  Threee days in a row, once a month for 6 months.  Rituxamad, Cyclophosphamide, Fludarabine.  Was actually feeling pretty good during the treatment, but then about 48 hours after the final one, the side effects started to hit, and yes like you said my exercise has been running to the loo a lot.  IT is optimistic that the symptoms do indeed start to subside and it will all be worth it in the end.   I look forward to your next post as it was both informative and encouraging.  Keep well.


Hi Richard,

sorry i have only just seen your comment. I hope you are doing well? I have now finished my treatment and am doing my best to try and bring some normality basck to my life but thats proving to be tougher than I anticipated. I think we concentrate so much on dealing with the chemo and dont take into account what follows?  I am planning on adding more to my blog very soon and hope it will be helpful to yourself and others.Keep well and keep the hope


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