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:
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:
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,