Side Effects - What is too much?

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Hi Liz


You have my understanding and sympathy. Looks like you are going to join the ranks of “the few who don’t respond well to chemo.” That’s how it was put to me. Not that it was a major problem - my hospital acknowledged and dealt with each of my side effects as best they could - but the way it was worded made me feel that either it meant chemo wouldn’t work (wrong) or it meant I was a whinger (wrong). It just meant that unfortunately some of us do get a huge range of vile side effects while others blithely sail through, almost unscathed. It just can’t be predicted.


I didn’t have white cell injections which seem to be at the cause of your acute troubles, so I can’t help there, but I had 3 x EC treatments and, after the steroid boost of Days1-4, I was like a zombie till perhaps Day 16/17. I experienced many of the side effects you list or their alternatives (many an unhappy hour was spent squatting on the loo in the desperate hope I might get some movement). I lost over 2 stone, slumping to under 6 and a half. Everything tasted of salt or soap and food textures were revolting. I kept going by following the nurse’s advice of a snack every 2 hours regardless. I saw no one and could go nowhere. My theory was that, if I could get to the loo, I must still be alive - but I could very easily have just lain there and wet the bed at times. However, what kept me going was the knowledge that I was only having three ECs before I moved onto weekly Paclitaxel, a “much easier drug.” Huh!


I’m sorry I can’t reassure you that it will get better. It may. But you aren’t alone in suffering awful side effects. You’re no a drama queen. I find the nurse’s enquiry about your mental health absolutely outrageous, as if a chemo patient’s mental health is relevant to their experience of side effects - it’s indicative of a prejudice that should not exist in nursing. However, there is no choice I’m afraid, unless you give up on chemotherapy, which is an option but one I never considered. The oncology team will monitor you very closely and probably adjust your dose. Mine reduced my Paclitaxel to the minimum because my neutrophil count was so low and I’d already been admitted with neutropoenic sepsis - keep your eye on your temperature, if you do nothing else (particularly if you stop the injections). They may well change your prep infusion too, stepping up the steroids perhaps to help you get through the first onslaught.


My advice is ask, as soon as you arrive for your next chemo (or arrange it by phone if you can find a supportive nurse), to speak to the doctor on duty before you start treatment. Show her/him a list of what you’ve experienced and the number of days/overlaps because, if it were me, I’d probably just start gabbling and forget to mention something highly significant. It’s awful and disempowering when the oncologist doesn’t really listen because they’re running late but you may have an adjuvant oncology nurse supervising you (I did, weekly phone calls at first and loads of advice as well as making changes happen - she even postponed one of my Paclitaxel treatments because she said she thought I was running on depleted resources - from a phone call). Well, it sounds to me as though you are well and truly depleted already. If you’ve lost all strength and will (I refuse to use the battle/fight analogies), treatment will be harder so it’s in their best interests as well as being their duty to rebuild your confidence, reassure you and make the experience as manageable as they can. They have weekly case meetings so they probably have already decided what needs to be changed (I’ve been surprised at how much the not-listening oncologist has still taken in and recorded).


I do hope things improve for you or your body adapts so you get some quality of life over the coming months but it does come to an end. Take care,

Jan x

That’s surreal. I read a very detailed post from you. By the time I finished my reply, it had gone. Did I imagine it? If so, ignore me!