January 2024 chemo starters

Since I have been getting the reverse treatment to many of you, maybe my experience can help a little. EC hit me initially hard, as you may recall, with all the side effects, plus fever etc. I have just had the 3rd round, and while I can now differenciate my symptoms a bit better, they are still not that much easier and just as confusing. In particular blood results. But EC cycles are in 3 week intervals, it may hit you harder, but you have a lot longer to recover. Your cell counts take 10 or more days to recover, as opposed to a few days during the shorter cycles. And the side effects are different. My blood results were low to ok in the first round (low platelets day 10, but everything ok on day 12) to not great at all in the second (low platelets day 10 and 12, high white and neutros, and only ok on day 19). Next test is on Wednesday next week, so can’t tell yet for round 3.
I felt truly wrung out and weak in the first round, in particular with the fever, but I think it may have been due to the Lipegfilgrastim that I had then received for the first time (I am getting one shot of a 14 day active booster). Since you have had shots regularly already, I think you’d be fine on that front.
Fatigue is a big deal still, I wasn’t quite prepared to be feeling so rotten and weak for ~10 out of those 21 days of a cycle. My biggest issue was and is the state of my digestive system. No nausea, vomit, etc. but the effects on gas, flatulence, indigestion and pressure. I know I can expect fatigue will lift again (for me, at least it does), but the 5-6 days or so with the gastric issues still throw me a lot, too. I suspect you will get a steroid as well, I get it for day 2, 3 and 4, and that also makes for interesting days and nights. I have heart palpitations and feel very jittery and dizzy early in the mornings after I have taken it (steroids are naturally high in the morning, take them early, so they don’t keep you awake too much at night.) I am allowed to split the third steroid pill in half, and take it over 2 days, to alleviate the effects. I get lower back pain with that, too, and have trouble sleeping nonetheless. Oh, and my bladder is affected by Cyclophosphamide, during the first 3-5 days I have to be very close to a loo, because “urge” = “going”, to the point of incontinence.
At least no more risk of neuropathy on EC. I am not looking forward to that, truly!
Hang all in there, have a great week and may all our treatments be over soon!

Thanks Caithlinn, it’s alot isn’t it, all these different things that can happen and working out how to cope. I’m speaking to the oncologist tomorrow about EC, your reply has helped me get ready. They are talking about a 2 week cycle of EC for me, I don’t know why and want to understand the difference. I’m feeling so tired at this stage I don’t want to get pushed too far unless it’s absolutely necessary. Really hope your next treatment goes well. Definitely can’t wait for this to all be over x

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Good morning. Quick qs for those that have had progress ultrasounds already do they talk about what they see in the scan or did you have to wait for the consultant appointment for results? My scan is next week two days after my consultant appointment. I’ve called and asked about moving it but heard nothing back. Thanks in advance.

I was fortunate that the scan was done same day before I saw the consultant, then they went through the results with me. When I had my MRI back in January the consultant rang me with results a few days later, so it varies. Really hoping you get great news with your scan.
They’re inserting a mag seed for me next week, not looking forward to that.
Have you had your treatment this week?

The scan technicians didn’t tell me anything at the time of the scan

Yeah I was dreading this being the case. It’s so annoying I rang up and they just said you need to keep the other appointment. I will be asking him about my results and when I will get them. He had put an urgent 2-3 weeks on it but it’s just over the three.

Yeah I had my treatment yesterday so back to feeling rubbish but never been so grateful to be :raised_hands:

What’s the procedure you need to have done?

So pleased you’ve got your treatment this week. Mine got delayed today as the pharmacy didn’t get my treatment in! So I’ve got it on Thursday instead.
My consultant is getting me ready for surgery after chemo, as the lump is now much smaller and if I’m really lucky will disappear before they operate. They’re going to put a mag seed in, which is a little bit of metal, to the small cyst I’ve got ATM. Then if the cancer disappears completely with the chemo, the surgeon will know where it was and remove this area in a lumpectomy.

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Ah no that’s so frustrating isn’t it!! Fingers crossed for Thursday :crossed_fingers: ah I see I had some clips put in when they took my biopsies as markers. Hope it all goes ok for you

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There is some thought and research that suggests having two weekly cycles is more effective than three weekly if possible. However I would stress not sure if this applies to all chemo regimes

Thanks Newbie1, yes my oncologist confirmed for my type it is preferable to have the 2 week interval so this what they try first. They aim for 4 treatments over 8 weeks if possible, so will have to see how my body copes. If it’s a problem may switch to 3 over 3 week intervals. Fingers crossed I can get through quickly.

Hi Little_Owl,

I hope you can do it! It is quite a ride, and I would not blame you at all, if you decided to go 3 weekly. I have to, because of the Antibody, but if I had had to do 2 weekly, I would have struggled a LOT more. It is true that according to research, 2 weekly intervals seems to have moderate advantages over 3 weekly, but I am not sure if they looked at combo treatments (before/after Pacli/other drugs) and neo- or adjuvant administration in those studies.

Anyway, the one week of relative sanity and normality every cycle is/was a life saver, without it, my QOL would have been soo much worse. Ultimately it is your body that will tell you if you can do it or not.

The only time I would have been ‘fit enough’ for another round after 2 weeks, according to blood results, was in the first round. Every other round so far saw my blood counts only recover during week 3 (this week is particulalry low.) So don’t be too hard on yourself! This stuff is poison and your body knows it. I wish you the best! Xx