FLAIR Trial - ErnieUK More Dehydration Round 5 FCR

[Ernest2]

Well can’t believe I’m now in the relaxing bit of round 5, after my difficulties at the end of round 4, and that round 6 is looming week after next.

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

After the end of round 4 and all the dehydration I really didn’t think I could do the same again, either mentally or physically.

Time flies by though and there I was to start round 5; “Time to go ! “

Again I didn’t feel great walking into the hospital, and initial results confirmed that with the usual two snags of:

-Hb = 73 g/L (too low)

- Neutrophils = 0.8 10^9/L (Need >1.0 to start treatment)

The poor Neutrophil result was despite doing (the normal for me know) 7-days of G-CSF injections just after the chemotherapy (one day off in between for good behaviour). Of course I don’t get to know how much worse it might be without the jabs.

However I always try to cram in lots of “jobs”, yes those fun outdoor things that need doing, the weekend just before the hospital, so a re-test on the Neutophils on the day got me back in at 1.11. My understanding is the exercise is just supposed to increase the effectiveness of the Neutrophils not the actual numbers. I need to understand all that better, here is one article:

ncbi.nlm.nih.gov/pubmed/800...

Anyhow I reckon the exercise at sensible levels is a good thing, as many of you have persuaded me.

Decision was made then to go ahead with the Rituximab and start the F + C Chemotherapy, and then sort the red cells the next day (gulp).

So here are my blood test results on the day of starting round 5:

_______________NOV____DEC____JAN____FEB___MAR___APR____Units______Normal Range

Hb___________106_____108____104_____83_____87______73______g/L_______130->170

RedCell______3.79____3.78____3.55___2.75___2.94____2.38____10^12/L___4.5->5.5

WBC_________256_____303_____4.4____15.2___1.65____1.71____10^9/L____4 ->11

ALC__________238_____282_____1.9____0.92___0.14____0.15____10^9/L____1->4

Platelets_____110_____133_____184____132___170___144______10^9/L____150->400

Neutrophils__10.25___12.1____1.6___13.2____1.02____1.11____10^9/L____ 2->7

Not sure what to read into the ALC having now stabilised at 0.15. I have to hope those are mainly good B-cells. Guess also the G-CSF is probably helping raise that number.

Had a good chat with the pharmacist assigned to the day treatment unit, who patiently explained in detail why we really take some of the antibiotics and antivirals with the chemo. So I learn that the main point of the Co-Trimoxzole (trade name Septrin) is for lung infections, PCP Pneumocystis pneumonia (I’m not sure how many forms of Pneumonia there are)

Now it was a bit of a shock to go back to Hospital on day 2 for the transfusion, but with the increasing effects of the chemotherapy on days 3,4,5 that was the best option for me, despite 2 early starts in a row in a bid to beat the city traffic (that does work though for the traffic).

Had an admin snag on the day, with the type matching so didn’t manage to start the transfusion until the afternoon, and only got two bags of blood in instead of the three I was hoping for and an early evening finish, before heading home. I did book a session for further transfusion, but decided I wouldn’t be in a fit state to travel into hospital to do that until after both the chemo and follow on G-CSF injections were complete.

Looking back on it that might explain why I was sick on the morning of day 3 just after taking my anti-emetics and antibiotics and antivirals. I was probably in too much of a rush to get them all down. No obvious tablets came up (sorry to be unpleasant) so the rule is you can’t take any more pills in that case unless you can identify the tablets. Strangely though it did make me feel much better so I was able to take the chemotherapy pills ok that day shortly afterwards.

As well as the anti-emetics I now eat shortbread biscuits whenever I start to well a bit wonky and sick. Also finally managed to buy some arrowroot biscuits, but I’ll save those to try next round.

Now after the dehydration at the end of round 4 I needed a better plan for round 5. My idea was to try drinking overnight as I get up lots of times in the night during chemo (also I’ve noticed that during G-CSF and the days when I’m fit enough to get some exercise). I think that overnight drinking, whilst not a great volume did help during the chemo, but I still ended up with an intense feeling of a shrunken stomach and unable to drink enough, but the effect seemed to be delayed a day to days 5,6,7 (rather than the 4,5,6 of the previous round of the treatment). Of course I don’t know how bad I would have been without that extra fluid, and somehow much to my disbelief, I did manage to take the last day 5 chemo pills.

Now I can never normally decide of the Fludarabine and the Cyclophosphamide which to take first. The Fludarabine have a bitter taste so are the ones to make me start feeling I want to be sick. So this time on the last day 5 I just lined them up in rows on a sheet of paper and alternated between the two sets, with small sip of water for each one. To take them I went as smoothly and quickly as I could, in order not to give the brain time for any bad thoughts. I was amazed to get that last set down with just two small hiccups near the end. Of course that is just the first stage, you have to keep them down and get them out the stomach in the right direction. When it says a glass of water with each, stick to that (see my earlier failure on that in round 2). I followed that up with a nice fresh cup of tea (black for max flavour) and half a cake (date slice) slowly nibbled over the next half hour.

Chemo dosage was still reduced, very approx. 75% F + C as per the previous round, so four pills of each.

So round 5 chemo all done, and the sobering thought that you can generally only have FCR once in a lifetime now.

With the delayed dehydration into day 7 I didn’t get a day off before starting the G-CSF injections that day, for a course of 7 days of jabs. Got the usual symptoms of dull headache (just ignore that), and a slight wonky temperature on day 2 of the G-CSF. I’m also sure in my mind that it continues to upset the digestive system with the disturbance of the G-CSF (The alternative may be much worse though).

So again I’ll now discuss the digestive system, and please skip to the end of this post if that doesn’t make good reading. I’m still trying to find a solution to the mixed/simultaneous form of IBS that the treatment gives me (although I do agree for the first week the Ondansetron does tend to bung you up if I can put it like that, so perhaps a different strategy would be best for that bit).

Have ended up still with powdered Ispaghula (Or Psyllium) as the best solution still (For the chemo days with Ondansetron, something like Movicol might be more appropriate, but didn’t want to risk that whilst travelling into hospital, so I’ll save that idea for next time). I think different countries tend to sell Ispaghula (Or Psyllium) in various different products. The common UK one unfortunately uses Aspartame as a sweetener, and that has been linked to cancer, although the reports don’t seem clear cut. I’ve therefore sourced some Psyllium capsules.

I haven’t attempted to swallow the Psyllium capsules though. Just give them a twist to split them open and drop the powder into water. That reveals two strange things:

-It doesn’t mix well with water despite rapid stirring – any ideas? (I wonder if the products also have an anti-caking agent or other to give you a good suspension)

-It doesn’t taste that bad to need a sweetener (just a bit musty, not unpleasant)

Aside: Before I get into big trouble please don’t split any capsules for prescription drugs without express permission of your clinician and pharmacist first . . .

I did notice another brand of probably Psyllium whilst I was in treatment again this last week, but failed to remember the trade name (Anyway I’ve got two bottles of the capsules to get through first).

The digestive system troubles do keep making me think of Ibrutinib, that I might be on one day, so I’d be interested if Psyllium would be any good to go with that, also if you would have to take them pre-emptively.

I do think it is unfortunate that Neutropenia (or the knowledge that you might be Neutropenic) means you tend to cut some of the healthy stuff out your diet (and the clinicians realize that is a bad choice). Snag of course is you don’t get to find out you are “all clear” until the day you go in for the next round.

That reminds me – I understand you can’t eat Turmeric during chemotherapy e.g. cancer.org/treatment/treatm...

(see the para near the end starting “People taking blood-thinning medications, drugs that suppress the immune system, or non-steroidal pain relievers (such as ibuprofen) should avoid turmeric. . . “)

Look forward to the day I can put that into an occasional mild curry again (Curries have big attractiveness during chemo when you need food with big flavours).

Now as I’d only managed 2 bags of blood transfusion during the chemo week I went for another transfusion last week. I was somewhat shocked to find very low levels again after just a couple of weeks:

Hb = 76 g/L

Good news was all the matching went ok and I was very kindly given three bags of blood. Transfusions are truly humbling. It is not stuff you can manufacture, and must be donated out of altruism. Thank you.

So can’t believe it, but here I am hopefully about ready for round 6 week after next (red blood cell count and Neutrophils aside). Time really does fly.

The thought now hits me I’ll be entering a new phase of “watch and wait”, and it is hard to get my head round that (I’m guessing at the moment that I’m not properly IgH mutated so I assume I will be needing treatment again after the FCR in so many years time).

That gives me a whole new range of things to think about and very difficult decisions to make e.g. work / life balance.

I think for those of us that work, CLL has taught us why will still do that.

Guess though the new period of “watch and wait” will bring back the strong feeling of “WANTING TO DO SOMETHING” (and I’m thinking about treatments in my case) but the parallel feeling of the impossibility of doing that.

With the digestive system worry (and my IgH status) I’m wondering if a Bendamustine + mAB treatment might be best of the next time I need treatment, and then save the Ibrutinib or similar for after that. Bendamustine does seem a popular treatment now.

So, fingers crossed for round 6, and Best wishes to all,

Ernest

[jangreen]

Hi sorry to hear about the bad time you are having with chemotherapy. I went through a similar experience and I sympathize with how you feel. Best wishes

[Ernest2 in reply to jangreen]

Many thanks Jan, hope things are good with you.

It is reassuring to hear from those that have done it before, even if in some ways we might not feel as good as we did before treatment. I'm predicting in my case as I've still got a little way to go and then start the recovery phase, with not much idea how long that might take (I'll be patient though). CLL just makes me think of a roller-coaster ride (which I'm not a fan of ) that we haven't figured a way out to get off. The pace is slow at times, and fast and scary at others. I've just learned to not be surprised by anything that CLL throws at us.

Ernest.

[PaulaS Volunteer]

Thanks Ernest, for writing about your latest FCR experiences in such detail. It was VERY interesting, though I have to admit that it makes me feel I'd rather avoid FCR if I can.

However, I realise FCR is a life-saver and best option for many people, and I'm grateful to the folk who did all the hard work and testing to make it available. Once the 6 months course is over, you'll hopefully not need more treatment for MANY years. Folk on the newer stuff like Ibrutinib need to keep taking it indefinitely (or until something better comes along). And as time passes, we're hearing of more complications and side effects of Ibrutinib.

But I realise there are pros and cons of all the different treatments. It's very hard to know what's best for each individual. I'm still mulling over it all myself, as my time for treatment gets ever nearer...

Wishing you all the best for Round Six...

Paula

P.S. I know what you mean about it being a humbling experience, to have a blood transfusion. I had a transfusion once (not CLL related), and remember looking at this precious red stuff going into my arm, and thinking that a real person went to the trouble to donate that blood. Like you, I was grateful.

[Ernest2 in reply to PaulaS]

Many thanks Paula.

Your description of transfusions is a good one. I'm really not good at putting that into words.

For me with a lifetime slightly wobbly digestive system, for 1st round treatment I was not sure if I could choose between the two arms of the trial (so glad to leave it to the computer - it did choose the answer I expected . . ). And as a certain great lady said a year or two ago, it is the symptoms after treatment that are the key ones, not those during it.

As I'm guessing at the moment in my case I'm probably IgH not fully mutated (as only 4 years to treatment) my wild guess is about 5 years before I'll need second line treatment. And then from my post you can see I'm now unsure about that. I am guessing though in that time that better treatment plans & ideas will emerge, if only ways of combining and taking existing available drugs and treatments.

Ernest

[AussieNeil Partner Administrator]

Hi Ernest,

Thanks as usual, for your detailed and informative report on your experiences with FCR.

I can commiserate with your uncertainties regarding what diet is safe when you aren't aware of your neutrophil levels - it certainly means a less exciting diet and for you, that's a double hit when you are off your food...

Any reason why you aren't just swallowing the Psyllium capsules? You've found the Psyllium is hydrophobic and the usual way around that is to mix it with a liquid that has some oily or emulsifier component, like milk.

There are very many causes of pneumonia, (I vaguely recall hearing of about 80 at one stage), so I suspect we'll always be adding to the list. Prevnar and pneumovax vaccinations only protect against the most common ones.

Don't forget that your ALC includes different varieties of T-cells and that would account for your non - zero result.

So your course is nearly over - just one more to go. Seems like you'll finally master the optimal approach when you have your last treatment - so thanks for helping those of us that follow you have an improved chance of getting the approach right much earlier!

Neil

[Ernest2 in reply to AussieNeil]

Many thanks Neil, a mine of good information as always.

My difficulty taking the capsules may be in my head (in several ways). Since I had the trouble with the Tonsils (removed early 2013) I've had a bit of a phobia about taking pills either of any size or bitter tasting, as it makes me gag. I guess the back of my throat might be a bit of a funny shape (also effects of the lymph glands ?) The idea of getting a Psyllium capsule stuck in the throat (with its expanding properties) does not sound a good one for me, so I prefer to stick to the capsules. Also I guess some of the problem is in my mind from past not so good experiences, and being concious that you do need to get chemo pills down.

The milk idea funnily brings back good thoughts of my Dad who was an industrial chemist (as well as a CLL patient), so he is probably looking down on me at the moment and chuckling that I can't remember how to make a suspension (I'll blame the CLL cognitive impairment). Generally have semi skimmed milk at home these days, so I dropped the capsule contents into 3/4 inch of milk and stirred gently. Semi doesn't give you a great emulsion, but all the powder stays in the liquid rather than sticking to the side of the glass as it does with water. So it now goes down fine. Thanks !

Follow that up with some water which the Psyllium needs to do it's stuff. You can also sip the water rather than down in one which is not fun just after a main meal. The milk also masks the taste. A better experience all round.

Incidentally that reminds me I think Ibrutinib pills are large size (and solid ?), from photos I've seen (I hope they don't taste bitter to go with that).

Thanks for clarifying the T-cells. I had forgotten the ALC includes those as well as the B-cells. Also I won't worry about that until I get another bone marrow after treatment to get the real test results.

Treatment so far has all taught me that it is not possible to get everything right for the next round as there will always be new things e.g. as your system changes in response to treatment etc.

So I need to try not to be too analytical, and go with the flow a bit more at times.

Thanks,

Ernest

[PeterMasih]

Have you tried the Psyllium in WARM water?

[Ernest2 in reply to PeterMasih]

No I'll do that, guess not too hot, otherwise it might start expanding too early though I guess . . . also might destroy its properties.

Lots of references available (also see milk option) e.g.

umm.edu/health/medical/altm...

I'm educated now, thanks.

That reminds me I used to be a hot water drinker before treatment (to avoid too much teas/caffeine in the day). I need to get back to that.

Thanks

[wroxham-gb]

Thanks Ernie, as usual a lot of good information about the treatment. As a beginner to this treatment the only thing I will ask is: do you not take the f & c tablets all at once. I was advised to do this by not touching them and trying to get them down in one go?

Hard I know but did you used to do this and it not work for you?

Remembered the tip about the biscuits and night water so thanks for that.

I too had to have a blood transfusion before treatment could begin. Forever grateful to all who donate.

My best wishes for round six, you are nearly there.

Sue

[Ernest2 in reply to wroxham-gb]

Many Thanks Sue.

I always take the pills in the same session, and as rapidly as I can one after the other to minimise the thinking time about anything going wrong. Fairly sure I couldn't take two at a time - Hmmm might be tempted to try a couple of the easy ones (Cyclophosphamide) in one go.

Day 1 and 2 or so are usually fine, but by day 4 or 5 when not feeling so good it does get a bit harder.

Important also to drink the two glasses of water to make sure they stay down.

Good to know of others also needing transfusions. I read a figure of 40% of patients somewhere but I don't know how many transfusions that was on average.

Ernest.

[Graham2222]

Great post, Ernie, as ever. Really helpful for people in a similar position. You could put all your posts together and it would make a superb book for anyone about to start treatment. Highly personal and informative, and reassuring in many ways despite your tribulations.

I wish you the very best for the final round. I sometimes find ibrutinib hard to get down and keep down, by the way. I've often seen the pills more than once a day!

Regards

Graham

[Ernest2 in reply to Graham2222]

Many thanks Graham.

When I do the last one I'll try to add some links back to the previous.

To make a really good book you would probably need several different patient experiences.

Also thanks for the info on the Ibrutinib pills. Hoping that they don't have any flavour (or alternatively a suitable coating) to help with the swallowing.

Silly question - do you ever have any thoughts about combining the two therapies. Snag there are many combinations and different kinds of patients to test.

Ernest

[Graham2222 in reply to Ernest2]

Ibrutinib pills are non-tasting and coated, Ernie. But they are quite large which makes them difficult to swallow sometimes.

I have to follow a routine every time, to build confidence about the ability to swallow the pills first time. I drink some water to lubricate the throat, put a small amount of water in my mouth, add a pill at a time, fix my eyes on the same point on the wall then throw my head backwards and swallow quickly and confidently at the same time.

This routine helps me, and no doubt we all have our own preferred methods. For me, part of the key is to persuade myself that that pill IS going down!

I am on a single agent trial, so there is no possibility of taking another method as well unless or until regression.

Best wishes

[Cllcanada Top Poster CURE Hero in reply to Graham2222]

Ibrutinib is an incapsilated powder...technical not pills and not coated...

Try Taking them with a bit of yogurt...

[MsLockYourPosts Passed Volunteer]

Ernest - I think that looking at a last treatment often leaves us with very mixed feelings. It's great to get the whole experience behind us, but leaves us with a sense of wishing that we were doing something for our CLL rather than waiting for something. Plus there is that period of waiting for counts to recover. I know some people getting Imbruvica feel that it reminds them of the CLL daily, but wonder if others find it comforting to know that they are doing something to fight it daily.

Hopefully, by the time, if ever, that you need to consider treatment again everything available now will be old and there will be a whole new group of wonder drugs to chose from, or maybe even the magic one that cures our beast.

Pat

[Ernest2 in reply to MsLockYourPosts]

Many thanks Pat.

I'd be very happy to find a way of living with my CLL, so a maintenance therapy would be fine by me.

It is probably hard though to find such a therapy with no side effects, which often gets more important as time goes by.

So I guess we will keep several different kinds of treatment for quite some time, as the different approaches get refined. Also invent new ones.

I am expecting at the moment to need treatment again as my IgH is thought not to be properly mutated, but tests that hopefully go with the trial may prove me wrong. I'm keeping my thinking realistic on that though.

So think I'll be just as interested about new treatments after FCR as I was before the FLAIR trial started. Also all the CLL/SLL variations to think about.

Ernest

[Cammie]

Ernie

Full details as usual best wishes for round 6 my friend!

I'm on week 6 of session three as number 4 delayed due to low Nuets were 0.7 originally went to 0.85 last week new blood test tomorrow Tuesday.

I am also told I may only have 4 sessions of FCR as I too have been subject to side effects. Hospitalisations on 4 occasions and like you cycle 3 had two sessions of IBS one in week one for 5 days and second in week three for 5 days where the toilet and I became best friends.

Anyway here's wishing you a trouble free last session and a great result after.

All my best wishes as usual.

Geoff

[Ernest2 in reply to Cammie]

Thanks Geoff.

Sorry to hear you are having a difficult time.

Four sessions I think can still be a sound treatment from what I've read.

Fingers crossed for your next blood test for round 4.

I have to admit that somewhere near the start of treatment (just in time) I did renovate the nearest loo (replaced all the plumbing parts) to where I work at home at the moment, and that has proved a sound investment.

Just hope to get back to my "normal" (pre-treatment) IBS after treatment, but accept that may take a little while. There is some chance of course it could get somewhat better (Fatigue is I'm sure a driver for IBS, and of course CLL makes the fatigue worse).

The very best of luck with the next round.

Ernest.

[jangreen]

Hi if you have trouble taking the tables have you tried relaxation or meditation. It was suggested by the hospital and proved to be a great help. Best wishes