Hello @TynLlwyn08, I have been reading your posts and wanted to check and see how you are doing? I can see that your treatment has not yet started and can undertsanding the uncertainty must be difficult. I am hoping your have a Clinical Nurse Specialist that you can talk to about your concerns? You can also get in touch with the Support Services team if you do want to talk things through: Blood cancer information and support by phone and email | Blood Cancer UK.
Take care Gemma
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Hi @TynLlwyn08 I don’t know whether you have started treatment yet, but I have Chronic lymphocytic leukaemia (CLL) and am half way through cycle 2 of my treatment. I’m writing a blog, which may help you to know what to expect, although I hope others in the Forum find it helpful too as I talk about not just Chronic lymphocytic leukaemia (CLL) and treatment, but living with blood cancer in general. It’s written with Honesty, Hope & Humour!
www.mybloodycancerjourney.co.uk
Angela
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Thank you Angela. Not started treatment as bloods improved temporarily so delayed starting fir a few more weeks but wont be long. I’ll take a look at the blog so thanks for the signpost. Hope youvare doing ok.
Take care
Martin
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Hi erica. Thanks for asking. Been a bit quiet lately. Awaiting results from scan and bllood tests. More bloods next week. Feeling ok so consultant doesnt want to start treatment at the mo which i suppose is good. Findthe uncertainty a bit of a challenge but not wishing for start treatment anytime soon. Compared to many people on the forum i still feel very lucky. Thanks again for support
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So bit if a shock last week to be called by consultant for urgent blood transfusion as haemoglobin dropped significantly to 6.2 in two months. Lesson for me was not ignore the symptoms ! spoke to consultant today and will be starting treatment next month. knew this day would come and as i had got quite ill over Christmas i am pleased to be getting on with it as fatigue and breathlessness got really bad. Should start by end of feb all going well alongside regular transfusions. Not expecting it to be easy butvwirk understanding and family support nake allbthe dufference as dud the bloodcqncer helpline when i needed it most. Onwards and upwards.
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Hi @TynLlwyn08 that must have been a bit of a shock, but it sounds as if your consultant is obviously proactive.
Sorry to hear that you got quite ill over Christmas as well.
I am so glad that you have got the understanding and support of your family.
Yes the Blood Cancer UK support line is there for as is our forum.
Please keep letting us know how you get on.
Look after yourself especially as you were quite ill over Christmas.
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Well what an interesting first day of treatment. Only 9 ml of my first treatment of obinutuzumab and had some nasty side effects. Including me passing out as blood pressure very low andvl temp skyhigh. About a dozen docs and nurses all looking after me. Fortunately no nhs strike today in wales but they are all worth every penny of a big pay rise. All ok now. Two extra units of blood and hope to go home shortly. Also the 9ml of treatment reduced my white cell count from 359 to 152 so some good came out of it. Meeting consultant to review things later this week.
Never a dull moment with this crap 
Wanted to share for two reasons. Firstly to just say that we know the nhs has challenges but cannot fault one person in the care they gave
Secondly was a frightening experience but when the nurse says to say if you have any side effects before, during or after treatment tell them as it is as things can change very quickly.
Hope everyone doing well and coping with your own challenges x
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That must have been scary @TynLlwyn08 but so glad that you have received good care by the NHS.
Be kind to yourself
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Hi @TynLlwyn08 I just wondered how you were now after your ‘interesting first day of treatment’ as you put it on Feb 7th?
Look after yourself.
Hi erica. We decided to start some short term chemo tablets to try and bring the white count down while having regular transfusions its worked really well bring white count down fron 370 to 19.4. Met with consultant today and looking to restart treatment in 3 weeks. Hopefully it will be less eventful this time 
and feeling positive if just a little nervous.
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Glad to hear it worked well @TynLlwyn08! Wishing you all the best with restarting treatment! How are you feeling in yourself?
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Good news @TynLlwyn08 , your transfusions seemed to have worked well.
Please let us know how you go when you restart treatment in 3 weeks.
Look after yourself
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Thanks Alice i am feeling pretty good. Getting a bit tired but thats to be expected. I am very lucky to have a great consultant and macmillan nurse who are making things very clear and that certainly helps.
Starting treatment again is scary probably more for my family than me but its inevitable
I know everyone is different but lesson for me us when the time comes try and get as much reliable advice as you can on options and side effects. Helpline were great when i just needed to talk these things though
Thanks again for all of the support
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Thought an update might be timely. So after a bit if disastrous first attempt at treatment we tried again. First with some pre chemo tablets to bring white count down. Few blips but managed to complete first course. Had a reaction resulting in a visit to A&E who were great. Second full dose of obinutuzumab completed yesterday and so far so good.
So lessons for me were. When the time comes talk through treatment options with consultant and nurse. Understand what they mean ask lots of questions and take notes as you will forget. Speak to others who can offer clear advice if needed like blood cancer uk. Informed decisions are always the best ones.
Secondly when the hospital give you a number to ring if you have any reaction during treatment keep it safe and use it. I needed to ring it out of hours and they were great and advised me to get to hospital as my temperature was rising so were worried about sepsis. Doctor said its the people who wait and hope it will be ok are the ones who get into trouble.
Thirdly trying not to think i am still young fit and healthy and overdoing it has been a challenge and frustrating. Managing the fatigue and pretending i can do things that then knock me out for hours is still difficult and there us a feeling of normal life being on hold but trying to convince myself its only temporary 
So treatment never an easy ride but feel thankful for the help and support from so far particularly all in my nhs trust who have been brilliant
Onwards and upwards
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Thanks for taking the time to update us and giving us useful tips @TynLlwyn08
Be kind and look after yourself, in my experience treatment not only takes it out of you medically it is also takes it out of you emotionally, physically and practically.
Your NHS trust does sound brilliant.
Thanks again and please do keep posting.
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Hi, I just wanted to connect with you and thank you for passing on what you’ve learned. It’s very helpful!
I too have Chronic lymphocytic leukaemia (CLL) , with TP53 mutated cells. I was on watch & wait for a year, then after a bone marrow biopsy I began targeted chemotherapy, Acalabrutinib, 4 weeks ago. I reacted rather badly, but am due to start again next week. I never realised that different trusts and boards make a difference or that there were so many different approaches. Like you I struggle with accepting that I can’t be the person I always have been…yet? I’m 62.
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Thanks floss. Good to hear from you. Yes i had a choice of acalabrutinib and was no obvious reason to choose one over the other. Seems like either can gave a bad reaction with any treatment. Positive was my consultant said as least we know its working lol. Hopefully settled down for me and hope you are doing ok. Im 57 but feel much older at the moment and understandhow frustratingit is. Hopefully tiredness will ease over time well we can but hope.
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Hi, yes me too.
Like the Inuits supposed many words for white, I now have a larger vocabulary of words for tired, weary, fatigued, weak etc. than ever before.
Good luck!
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Hi all. Thought it was an opportunity to update where i am. Dare i say treatment going well after a shaky start. Several rounds of obinutuzumab and now on full dose of ventoclax has brought bloods counts temporarily back to normal and energy levels are far better. Feels like getting vack to normal but 11 montgs of treatment to go. I decided time was right to share where i am publicly to use the opportunity to promote the blood donor service in the hope i can get a few new donors along the way. Feedback has been positive as the making blood cancer more visible and ill be hoping to also do some fundraising. Finally welcome anything i can do to promote the visibility of the great support and work done by blood cancer uk as a direct beneficiary and thanks for the continuing support.
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