FLAIR Trial - ErnieUK Dehydration in Round 4 FCR (and home made soup)

[Ernest2]

Well I’m glad to report I’m finally into the R&R stage now of round 4, and Spring seems to have finally arrived just in time for Easter.

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

So how did round 4 go? Well, similar problems to round three to start with.

On the day I arrived at hospital to start the round 4 FCR treatment in March I really felt I was turning up for the wrong treatment. In my mind I needed a boost first, not more FCR. I did struggle to walk from the car to the hospital door.

Results proved the thinking in the back of my mind, with red and white cell count problems again. For the Neutrophils I was surprised as the G-CSF injections I’d done just after the round 3 chemotherapy didn't give me the same apparently large boost as before, so the results came out as.

-Hb = 7.6 (too low)

-Neutrophils = 0.67 (Need >1.0 to start treatment)

I was tested for iron levels, but those were normal, so the solution as round 3 was another blood transfusion to increase the numbers of red cells, and for the Neutrophils, to simply delay the FCR a week for the cells to increase in numbers.

I had wondered what the best strategy is for the G-CSF injections and wondered if spreading them out a bit more might be beneficial, but the theory is to administer them one a day starting just after chemo, when the Neutrophil count is at its lowest and hence the G-CSF benefits will be the greatest (I could still imagine compromise strategy scenarios though).

For the transfusion I didn’t get as many units of blood this time, so fine to start treatment, but feared the benefits would not last until the end of round 4.

So the following week I had to get all the bloods retested on the 1st FCR day and with great relief the Neutrophils just squeaked in at 1.02.

Here are my results then on the day of starting round 4:

_______________NOV____DEC____JAN____FEB___MAR____Units______Normal Range

Hb___________106_____108____104_____83_____87______g/L_______Normal 130->170

RedCell______3.79____3.78____3.55___2.75___2.94____10^12/L___Normal 4.5->5.5

WBC_________256_____303_____4.4____15.2___1.65____10^9/L____Normal 4 ->11

ALC__________238_____282_____1.9____0.92___0.14____10^9/L____Normal 1->4

Platelets_____110_____133_____184____132___170_____10^9/L____Normal 150->400

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

Aside: I’ve changed the Haemoglobin units in the table from g/dL to g/L now (compared to previous posts) so all the numbers get ten times bigger.

Good to see the platelets are now in the normal range.

So started round 4 FCR on the day of the above results.

The Fludarabine and Cyclophosphamide dosage were both reduced as I’m struggling in the bone marrow department to manufacture red and white cells:

-Fludarabine from x5 to x4 tablets (10mg each)

-Cyclophosphamide from x6 to x4 tablets (50mg each)

I guess that dosage is not likely to increase again in future rounds 5 and 6. Apologies forgot to ask about my Rituximab dose, as I happily sit there whilst that is done for me (I’ll ask next time).

Nausea and sickness were well controlled for the round 4 FCR now I’ve learned the warning signs, and have the biscuits handy. See my round 3 post for that:

healthunlocked.com/cllsuppo...

My snag in round 4 hit me on days 4 and 5 of the chemo. I knew I wasn't drinking enough. That sounds really easy when you are feeling well, but the effects of the chemo tend to be a vicious circle, that gets worse as you drink less. My stomach felt like if had shrunk to the size of a ping pong ball, so eating and drinking just a small amount instantly makes you feel full. I really didn't think I’d manage to take the day 5 chemo pills but somehow just managed it. I did remember the “full glass of water” with each set of the chemo pills though so managed to keep them down. Anyhow, any good ideas on the hydration, and looking after the stomach would be greatly appreciated. Decided to make smaller cups of tea rather than look at a very cold small one. Also been eating very nice home made soup from the very dedicated one who is looking after me.

Have wondered if I should start drinking overnight during those bad periods at the end of the chemo period, but I can’t think of the best thing to drink, as it obviously needs to be a stomach settler. I’m probably up about 4 or 5 times in the night anyway to visit the bathroom, so if I did try that strategy I would not need to drink a large volume each time.

It does make me think of course of the possibility of doing all the stuff, including the hydration by IV, but of course that is not a cost effective solution, also the risks of being in hospital with a low Neutrophil count could be very counter productive.

The “stomach shrinkage” did fortunately get better in a couple of days after the chemo ended.

After the five days of FC chemo, had a one day break, then started the next set of self-administered G-CSF injections for seven days. Didn't get any bone ache, just the dull headache as before, and a continuing upset digestive system.

Had similar problem to round 3 with the digestive system.

Please skip to the end of this post if you find this unpleasant. The form of IBS I have now during treatment I’ll describe as mixed/simultaneous. That doesn't seem to leave you anywhere to go with a workaround solution, except perhaps a healthier diet, which the Neutropenia somewhat dictates against.

Thinking about it though I've had:

-1 week of chemo/effects of chemo, which I think is accepted may upset the digestion

-1 week of G-CSF injections which again I think can upset the digestion

-1 week of low red cell count, which I wonder might also upset things (haven’t found a good reference for that yet for FCR patients)

Anyhow the best solution I've found so far, after trying various others that didn't work, is powdered Ispaghula husk that you mix with water, and drink after each meal. PM me if you are not sure of Trade names for that. I’m still experimenting with the dosage. It does also remind me of my father, another CLL patient, who also took these at one time, although I can no-longer correlate that to when he had CLL, and CLL treatment, such as that was in the 1980’s (Oh for a Tardis and some supplies of Rituximab etc.).

Please let me know for the digestion if you have found any better solutions, thoughts / ideas.

Anyhow if that is the worst problem I have, then I think I’m not doing too bad at the moment, and count my lucky stars.

Also finally hit it lucky and, with a pounding head again, got another 2-unit blood transfusion just before the Easter weekend, so have been out enjoying myself in the garden, and catching up on stuff I couldn't do over the past few weeks.

Happy Easter and Best wishes to all,

Ernest

[PaulaS Volunteer]

Sorry it's been so hard for you, Ernest. But I admire your positive attitude. Thanks for sharing all the down-to-earth details, both the ups and the downs.

So glad you had a good Easter weekend. Wishing you all the best for cycles 5 and 6.

Paula

[Ernest2 in reply to PaulaS]

Many thanks Paula.

Fortunately your brain is good at forgetting the bad bits, so as things get better you can put it all into perspective.

I am a bit apprehensive at the moment about 5 & 6 though as I guess that is where things might get tough, but have to wait and see. Usually with that kind of thing it doesn't turn out how you expected, so must keep an open mind.

The change in the seasons helps with all that I think - wish everyone a good summer.

Kind Regards,

Ernest

[MsLockYourPosts Passed Volunteer]

4 down, 2 to go. I hope the next 2 rounds are a little easier on your system! Beautiful picture. I love daffodils. We really should at least have a photo album here on the site. So many amazing photos.

Pat

[Graham2222 in reply to MsLockYourPosts]

Thanks for the update again Ernie. You are a very strong character, and I'm sure your positive attitude is helping you along this challenging path.

Have you tried taking sips of milk during the night? I find milk settles my stomach better than just water all the time.

Best wishes

Graham

[Ernest2 in reply to Graham2222]

Thanks Graham. I think positive thinking is the only way to get through it, whatever happens.

I was wondering about milk so will give that a try. Not sure real Milk or Soya (I haven't bought any Soya for a long time). You are right about water - in the Chemo stage you need some flavour to make it palatable.

[Ernest2 in reply to MsLockYourPosts]

Many thanks Pat.

Have a garden full of daffodils at this time of year so just have to point the camera at them - with some sunshine of course.

[wroxham-gb]

Glad you enjoyed your Easter. You are doing well and only 2 more sessions to go.

I say only 2 because that is better than 6. l enjoy the time and the detail you put into your posts.

Sue

[Ernest2 in reply to wroxham-gb]

Thanks Sue. It is probably therapeutic for me writing them, so many thanks for reading. I can also imagine reading them in future when I'm trying to remember what happened back in the FCR days. Although for FCR you can only have that treatment once in a lifetime now I think.

[jangreen]

Hi I sympathize with you. I too had a bad time during chemotherapy. I too needed injections, had a bad time with being sick and had to have my last two cycles reduced to 75 0/0. Four years later I am still minimal residual negative. I can still remember and will probably remember for the rest of my life how awful it was. I wish you all the best and hope you get through this.

[Ernest2 in reply to jangreen]

Thanks Jan. It is reassuring that others have the same symptoms and need for injections and transfusions etc.

Long may you keep your MRD status. I'm expecting as a probably not fully Ig mutated patient to lose that after so many years (assuming I can achieve it first at the end of FCR treatment of course). Not sure how I'll feel about that yet, but I think CLL teaches you to just make the most of whatever you have.

There is a chance I could be proved wrong on the Mutation. I was given figures of 4% of CLL patients are properly mutated (for whom FCR might be a cure) using traditional tests. With new genetic tests (that FLAIR will do) the percentage figure for mutated is hoped to be a bit higher, so a few more of us might be lucky enough to squeak in - so just at the moment I'd rather live in ignorance and hope on that one (I'll be happy to know the result though - just the way I am).

[Ednarose]

When I did FCR I found that drinking a good strong ginger beer ( non alcoholic) helped me, it refreshed my mouth and settled my stomach. I remember it well, counting down the treatments, good luck with your final two rounds. I finished my chemo nearly three years ago and all my bloods are normal.

[Ernest2]

Thanks Ednarose. I think you are right about strong flavours. I'll stick to milk at night (see reply above to Graham) but ginger beer in the day time might be interesting. As long as it is liquid (no alcohol) and it is attractive enough to drink it might just do the trick.

Kind Regards to All,

Ernest

[buckinhard]

What an awful way to get better, I'm cheering for you to hang in, enjoy the pretty things and finish your treatment. You really do have a wonderful, strong, warrior spirit !! All my best for you to come out on the other side, feeling good and a big smile !!

Hugs,

Denise

[Ernest2]

Many thanks Denise. I wasn't expecting a totally smooth ride, and I guess some bumps to come, but some of it has surprised me a bit - all an education !

Ernest

[Fowey2009]

Thank you for your posts which have been really helpful.

Husband was due to start cycle 3 FCR yesterday but was neutropenic so now having injections for 3 days & treatment starting again in 2weeks if neutrophils back above 1.

Previous 2 cycles seemed to work out as 1 bad week (sickness in cycle 1 & nausea in cycle 2), 1 medium week and 2 good weeks. In the good weeks he seems to have more energy than he has had for many years. He went back to work for weeks 3&4 of cycle 2. He is still feeling well despite the neutropenia but we are both feeling as though this is a roller coaster & never quite sure what is going to happen next. Hoping a holiday next week will help.

[Cammie]

Hi Ernie

Like you I have been having some problems with FCR.

First cycle I flew through no side effects at all.

Second got nuetropenic sepsis and was hospitalised for 10 days.

Then developed a rash due to allergy to a drug which I had been taking for some months prior to FCR seems the chemo triggered the reaction hospitalised again for a week with sepsis. Nuets down to 0.02 whole body skinned!

Third cycle very bad diariah for 4 days hospitalised again for a week during which time developed a further rash which we think is caused by the Aciclovir I've been taking. No problem previously so change must be caused by chemo reacting with this drug.

Anyway bloods seem to recover between sessions with normal blood counts before session three so that is very encouraging.

Currently week 2 of third session and nuetropenic again been suffering a bit with tummy but hopefully this will abate and my next session (4) is 23rd April.

There was some discussion as to whether 6 sessions were needed so this will be reviewed after session 4.

So all in all Ernie its been a bumpy ride but with some encouraging signs only major problem is I have now been hospitalised 5 times since Christmas with 4 down to side effects. We await session 4 with some trepidation but as you say keep a positive attitude and get ready for a good summer.

Hope things go well for you my friend,all my best wishes!

Geoff