CLL and starting treatment

Well seems after 2 years on watch and wait numbers are reaching the point where treatment is likely in the next couple of month’s. Didn’t really expect it so quickly but everyone is different. Spoke to helpful mcmillan nurse who has sent me some information on the various treatments. None look great lol. From those have have had treatment how the heck to you try and get an informed view of best option and how much patient choice is there or is it all down to yhe consultant. Feeling somewhat nervous about next steps but know treatment was inevitable. Thats for listening

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Hi @TynLlwyn08 I am not surprised that you are feeling nervous, I would be too. It’s the scary unknown for me.
I am a fellow Chronic lymphocytic leukaemia (CLL)’er on watch and wait.
Nobody can tell you which treatment you should have as your medical team take so many different things into account, we are all individuals with our own medical history, family history, practicalities and of course test results.
I think this is your opportunity to write all your questions, fears, practicalities etc.
Also perhaps you haven’t got to agree to anything you are not comfortable with, perhaps you can say you would like time to consider and will get back to them.
If you have a Clinical Nurse Specialist (CNS) they are often good for questions.
You can also talk to the Blood Cancer UK support line and contact their Nurse Specialists @GemmaBloodCancerUK @LauranBloodCancerUK
We are also here for you, look after yourself

Thank you erica. Its just nice to be able share my thoughts. Next bloods next week and consultant the week after and ill see where i am after that. Thank you

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Hello @TynLlwyn08, thank you for posting and I am sure you will feel very supported on the Forum. I am sorry to hear that you have to start treatment, being informed and prepared is very important. To reassure you, the treatment decisions are decided upon through a multi-disciplinary meeting where a group of Haematologists, Pathologists, Radiologist and Nurse Specialists review your case and propose the best treatment for you individually. This will then be dicussed with you and you will then have an opportunity to ask questions. Here is our information on Chronic lymphocytic leukaemia (CLL) treatments: Chronic lymphocytic leukaemia (CLL) treatment and side effects | Blood Cancer UK and please do get in touch if you would like to discuss this further How to contact Blood Cancer UK | Blood Cancer UK. I would also very much keep talking to your Clinical Nurse Specialist and ask any questions about treatments that you are concerned about. Make a list of questions for the Doctors and please know that your opinion is important to them too.
Do take care
Gemma

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Hi @TynLlwyn08 I was on watch and wait for a little longer than you but not excessively so and by the time my consultant recommended treatment, my fatigue was definitely becoming more of an issue as my red blood count reduced. It therefore seemed appropriate to start treatment and I didn’t second guess my consultant’s recommended treatment strategy. He explained what it would entail, which in my case was FCR chemotherapy for 4-6 months. I know that we all try to become experts in our particular cancer type but I accepted that although I wanted full disclosure from my consultant I realised that he had far more experience in treatment options. I did find the Bloodwise patient information books very useful, much better informed than Google. :slight_smile: Treatment is not great but neither is it too bad. In my case I felt under the weather for the week of treatment but fine for the following three weeks. I also found that my blood numbers started to improve very quickly and my fatigue was much improved after a couple of treatments. I ended up with 5 treatments, we decided to curtail the last due to COVID starting and my numbers were looking good. I’m now having periodic checkups with the consultant but am back to my pre-diagnosis fitness levels. I’ve always been active and am back cycling, running and playing tennis and squash. I understand that you will be apprehensive , we are all nervous of the unknown but ‘trust me’ treatment is not that bad and I’m confident you will feel more like your old self’ once you get through it. You’ve come to the right place to get good feedback from fellow sufferers and feel free to get in touch if you have any questions regarding my personal experience.
Regards

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Hi @Arson I am impressed with your exercise regime and you also have the social side with at least the tennis and squash, enjoy.

Thanks so much thats incredibly helpful. Latest bloods taken and consultant next Tuesday so ill where i am then but fell much better for sharing.

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@TynLlwyn08 please let us know how you get on next Tuesday with the consultant and don’t forget a written list of fears, questions and practicalities to ask.
Take lots of care

Thank you erika Will do

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Hi @TynLlwyn08 I was just wondering how your appointment went on Tuesday ?
Look after yourself.

Thanks erica. Bloods from last test went haywire. White cell count fallen as has hemoglobin and platelets. Have a further consultant appointment next Monday to discuss treatment option starting which will start next week. Feeling ok about it as think the time has come so choices to make. Ill update after next monday and thanjs for continued support

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Thanks so much @TynLlwyn08 for updating us, yes, choices to be made.
Please make sure that you feel comfortable with whatever you decide, even asking for a bit more time to consider if you need it.
I’ll be thinking of you on Monday and yes, please update us.
Look after yourself.

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Good consultant meetings today. Talked-about options so feel i can make an informed decision. Further blood tests which may narrow these diwn a bit. As 56 and relatively healthy FCR seems like a good option or alternatively combinstion if two of the targeted non chemo drugs. Got it all written down and have a few week’s to decide once bloods back. Feeling positive

Reading some other posts i feel i am lucky with the support from consultant and mcmillan nurse compered to some people.

Onwards upwards

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Great news and I am impressed with your note taking @TynLlwyn08, I can hear the relief in your post.
Don’t forget our lovely nurse advisors on here @GemmaBloodCancerUK and @Heidi_BloodCancerUK @LauranBloodCancerUK and the Blood Cancer UK support line is always there for you.
Please look after yourself and let us know what you decide, the unknown I think is always scary though.

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Thanks Erica and all for the continued support and sounding board as just writting it all down helps enormously.

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Hi @TynLlwyn08 I have been thinking of you how are you doing now?
Look after yourself

Thanks. As it happens had a consultant meeting yesterday. Seemms eligible for FCR but as its in a different health board need them to consider. Further update expected on 10th. Difficult to know what’s for the best with different potential side affects and impacts on new job that i have just started. Feeling a bit confused :confused:

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Hi @TynLlwyn08 I agree it is so difficult to attribute a symptom to one event, we are very special, individual, complex beings.
I really do find new jobs or even roles really exhaust and fatigue me, I often put the pressure on myself, and I do not deal with what personally stresses me well either.
Please let us know what happens after the 10th
Be kind to yourself.

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