FLAIR Trial - ErnieUK Final Round 6 FCR Surprises

FLAIR Trial - ErnieUK Final Round 6 FCR Surprises

I write this Post four weeks now after completing my final Round 6 of the FCR treatment. That’s from taking the last chemotherapy pill.

As always please correct me on any errors/omissions and share your own experiences.

Round 6 has thrown me a couple of surprises I wasn’t expecting.

Please excuse me first, but for anyone new to HU and who wants to read how I got on during the previous rounds here are the links (I’ve put in a couple of extra posts for the first two rounds):

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

Ok so how did I get on in Round 6?

As usual I walked into the hospital from the car expecting a bit of trouble with my Neutrophils and Red cell Levels, but never know quite which of these will be sorted out first.

I found out, from my GP blood test, that both were low, and the hospital re-test confirmed that with:

- Hb = 84 g/L (rather low)

- Neutrophils = 0.8 (Need >1.0 to start treatment)

So this time I had to swap round and do the 7 days of G-CSF injections first to get the Neutrophils back on track. I’m fairly used to those injections now, with a dull headache for the first few days and a one day stomach upset. This time however I didn’t get the odd day with raised temperatures. Doing the injections well away from the last Chemotherapy (4 weeks) I got a really impressive rise in the Neutrophils with:

- Hb = 75 g/L (too low)

- Neutrophils = 11.8 (Need >1.0 to start treatment)

So, here are all my results prior to starting the 6 rounds:

_______________DEC____JAN____FEB____MAR____APR____MAY____Units______Normal Range

Hb___________108____104_____83_____87______73______75______g/L_______130->170

RedCell______3.78____3.55___2.75___2.94____2.38_____2.46____10^12/L___4.5->5.5

WBC_________303_____4.4____15.2___1.65____1.71____12.56___10^9/L____4 ->11

ALC__________282_____1.9____0.92___0.14____0.15____0.21____10^9/L____1->4

Platelets_____133_____184____132___170____144_____127_____10^9/L____150->400

Neutrophils__12.1____1.6___13.2____1.02____1.11____11.8____10^9/L____ 2->7

That large boost to the Neutrophils allowed me to start Round 6 FCR but with a blood transfusion organised for day 2, to top up the red cells, after the IV Rituximab on the first day. The Chemotherapy dosage was kept at the same level as rounds 4,5,6 with an approximate 25% reduction to 75% of the original calculated full dose.

Now unfortunately you don’t get a blood test after the transfusion, so I don’t know exactly what level you get up to, but from recent estimates I’m thinking that transfusion of three bags of blood took me up to perhaps very approx. Hb = 105 g/L (Guess).

As ever I am truly humbled by those that donate blood for the benefit of others. Thank you. My words here aren’t good enough.

Now for my first surprise in this round:

Aside: If you’ve read some of my treatment posts before you can probably remember I’ve never been too good on the sickness and nausea side of things, and back in Round 2 when I was somewhat of a novice at these things, managed to put myself into my local hospital to get that sorted out, after a bout of repeated sickness.

In this round to my surprise I detected minimal sickness and nausea effects from the Chemo and Immunotherapy. I’ll go straight to my conclusion here and guess that the level of red cells has a big effect on the levels of sickness and nausea, and that the transfusion on day 2 put me into a good position. Remember also regular eating, little and often seemed to help me (keep the biscuits to hand. I got a packet of arrowroot for round 6.)

The week after the Chemotherapy I had a couple of days feeling shaky and with some sweating overnight. During previous rounds that seemed to happen during the G-CSF injections, so now I’m not sure of the cause, but happy not to worry for a few days, just keep taking the temperature and check it doesn’t keep rising.

Now they say that the Chemotherapy lasts for 6 to 8 weeks in your system, and even when it’s on its way out, your bone marrow still has to recover. Also with really good memory you might remember my solid bone marrow that had a lack of the liquid aspirate:

healthunlocked.com/cllsuppo...

So over the following weeks I’ve been able to detect without blood tests that my red cell levels have been dropping. The key measure to me is the feeling of the heart beat thumping in my head, rather than feeling out of breath. Walking upstairs gets harder each day.

When the red cell levels are low it does also get dangerous. I had a fall back in round 5 that still hurts, and in round 6 managed to miss the last step when coming down the stairs with the laundry basket, and ended up in a heap on the floor with a twisted ankle. Funny I was “being careful” with one hand on the rail which I wouldn’t normally do, so I couldn’t lift the basket easily to see the last step. Nothing broken in either case, so I count my lucky stars, and say thank you to my physiotherapist.

So remember with low red cells you do want to be careful, but your brain just won’t be working quite as well as normal to make those decisions on risk.

In this post I won’t say too much about the digestive system, but I have carried on taking Psyllium powder, three times a day to keep things under control. If you take any of these kind of supplements though, do discuss it with your treatment team to make sure you are taking the medication, the food and the Psyllium (or alternatives) in the right order, with the right delays in between. I decided myself on the chemo days not to take any Psyllium (or other things I’ve tried) in the morning when the Chemotherapy pills have to go down. I did realise afterwards that I hadn’t given that enough thought and discussion, but more through luck than judgement I think with hindsight I didn’t make any significant errors.

As the weeks have gone by then in round 6, my red cell levels have kept falling. I was hoping for a transfusion after 3 weeks, but with:

- Hb = 80 g/L (On the boundary for a transfusion)

- Neutrophils = 0.3 (very low)

. . . I delayed a further week. I was struggling by then, and on test had an alarming new low of:

- Hb = 63 g/L (That really doesn’t feel good)

The surprise I did get though was the Neutrophil result from a test a few days before of:

- Neutrophils = 2.5

I really wasn’t expecting that, and did wonder at the time if it was a one off result.

The day after the transfusion I went for my “1 month on” consultation and very interestingly the blood test on the day gave:

- Hb = 98 g/L (That feels much better :-) )

- Neutrophils = 1.9 (Still good)

So with great happiness I’ve been given the all clear on the Neutropenic diet for the time being. I do think that is a difficult issue to understand and make sensible decisions about.

At the moment I’ll have to assume that my red cells may continue to fall for some time, but I’ll be very glad to be proved wrong.

So I’m not sure where the CLL roller-coaster is heading but I’ll try to imagine a good place.

For the FCR treatment and all the other help I have to say a huge thanks to all my clinical teams at the Hospitals and the GP practice.

And to my wife who has patiently been looking after me.

And to all of you on HU for your endless helpful posts and comments – thank you, and many thanks for reading.

I will post again to let you know how I get on.

Best wishes to all,

Ernest

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14 Replies

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  • Brilliant Post, Ernest,

    Really useful and helpfully detailed. All the very best.

    Regards,

    zentangle

  • Ern,

    Congrats on finishing up. I'm praying for a long remission and quick recovery.

    Jeff

  • Well done Ernie!

    Hope for great news from you soon.

    Geoff

  • Hi Ernie

    I'll second zentangle ... what a wonderfully written post.

    I hope now you'll get to enjoy the summer ... ( if it ever turns up ) ... and hope you remember to treat your better half ... she deserves it I'm sure.

    I look forward to reading any follow up posts, and I'll toast the end of your treatment with a nice wee dram of Dalmore 12 year old whisky soon.

    ps

    I could be doing with more good news updates on this site ... I bought the bottle last Christmas, and it's still half full ....

  • Well done Ernest and thank you so much for taking the time to share and explain, so helpful. Wishing you all the very best for a happy healthy summer and onwards x

  • As helpful as ever, Ernie. Congratulations on completing the course! And very best wishes for the future.

  • Well done Ernie and for your well written post, your journal will be a great help to us all.

    Wishing you a long remission and speedy recovery.

    Great photo too, summer is here and you shine as bright as your clematis.

    Look forward to your next post

    Nick

  • What a great post .

    I found it really informative .

    I do hope you continue to do well and enjoy the summer .By the way where is it?)

    It was more like December yesterday but we are told it will be better today and tomorrow .Lets hope so .

    Keep up the good work and I look forward to reading your next post .

    B

  • Thank you everyone.

    All the photos of flowers are generally in the back garden.

    Strange how CLL improves your gardening.

    The generally cool summer so far is perhaps a blessing to those CLL/SLL patients who are overheating, but we would all like a few warmer days and it does depend on where you are.

    Many thanks,

    Ernest

  • Dear Ernest,

    Thank you for the really helpful posts, I will come back to these at the stage when I need treatment.

    All the best,

    Barbarann

  • Thank you Barbarann.

    Bear in mind as CLL/SLL patients we are all a bit different (something to do with funny epigenetics they say).

    So keep reading HU !

    Best Regards,

    Ernest

  • Hi Ernest,

    I too would like to thank you for all your detailed posts, as you went through the ups and downs of FCR. Sharing the little day to day practicalities of what you've actually been through, is very helpful, and makes it very real to us...

    Wishing you all the best for the future,

    Paula

    P.S. Beautiful clematis flower!

  • Very helpful post. So happy you are on the other side of treatment. Wishing you all the best for continued recovery.

  • Many thanks everyone for all your kind comments.

    I have to keep saying a big thanks to all on HU for all your help that has got me through it, and to where I am.

    Ernest.

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