3 ms·
Some notes from experience from the other side of a failed chemo: - Not all ports are metal. Some are plastic. - Not all chemo drugs have the same side effect
by trynewideas 6y ago
Some notes from experience from the other side of a failed chemo:
- Not all ports are metal. Some are plastic.
- Not all chemo drugs have the same side effects; even within drugs, not all implementations have the same ingredients.
- Lots of chemo retrospectives talk about "nausea", but that's imprecise. Nausea and vomiting are separate things, and can be invoked separately. Some chemo drugs act on the vestibular system, which is the part of the nervous system that decides whether the body needs to vomit; some chemo drugs in your blood basically yell "PUKE PUKE PUKE" at your brain, and you vomit without nausea. Other chemo drugs do a number on dopamine or serotonin receptors, giving you intense nausea without the trigger to puke (but you might anyway). You can tell if you're in the latter bucket if chemo makes you absolutely hate chocolate, turkey, or other tryptophan- and tryamine-heavy foods — without the serotonin/dopamine boost in most chocolate, it's just a weird bitter taint that ruins sweet flavors. (Also, some chemo drugs make you REALLY crave fructose. By the bucket. Fruits, fruit-flavored candies, fruit juice, non-stop.)
- If you're young and relatively healthy, there's a decent chance you'll deal with your port closing up, especially if your cycles are 3+ weeks in length. Flushing the port is time-consuming; chemo is already hard to schedule around, but if you have port issues, nothing is ever going to take just 2-4 hours.
- Not sure if Charlie had to deal with pre-meds and post-med flush drips, but we did, and they're mandatory — even if you're unable to finish the infusion.
- Some chemo drugs have a slim chance of causing a severe reaction. If you're going to have one, it'll be within the first 10 minutes of the first infusion. If you have one, it might be a classic sudden allergic reaction, in our case Taxol caused the throat to close up, losing the ability to speak or breathe, treated with a heavy dose of Benadryl. Regardless of the specific reaction, if it's severe then it's a massive problem going forward, because your options are to either ditch the oncologist's first-choice drug or (with a ton of suffering) try to build up a resistance in a hurry. And yeah, if you're unlucky enough to have that reaction, you're very likely going to have that violent reaction in front of an audience of everyone else getting an infusion.
- One of the side-effects of chemo isn't listed here, and might not be a factor in his combo, but in general chemo has an eventual side effect point where it can't continue: the potential to cause nerve damage. This will look or feel a little like Parkinson's, with numb extremities, loss of motor functions, difficulty stringing together words/actions. At the first, slightest sign of this, chemo is over, sometimes for good. If the cancer isn't getting treated by then... good luck.
- Holding off on a cycle due to low white blood cell counts is a foreign concept to me. They ran tests and infusions between cycles to keep WBC counts up, but any cycle delays were considered suicidal. Again, might've been just our treatment course (and severity; we started at stage 4).
- This will vary between infusion centers, but as long as COVID is a problem, you can't rely on having in-person company with you, or contact with other people getting infusions (on account of everyone involved having massive immunity problems from the chemo). If you crave contact, bring a phone, a charger, and the longest possible cable you can get for that charger.
- whatrocks 6y agoThank you for this reply. I completely forgot to add the nerve-damage potential to my post and I'm going to amend it to add that, since that is a risk (and one of the other huge reasons that we elected 3 months instead of 6 months).
- greedo 6y agoGreat comments. I experienced neuropathy in hands, feet during chemo, as well as extreme sensitivity to cold. My hands recovered, and the cold sensitivity went away, but my foot neuropathy has persisted for 16 years. Some days it feels bad, other days it's more like a diminishing sensation.
- jcims 6y agoCouple of other ones: - If you're going to do chemo and nobody recommends a port, ask about them...particularly if you are a tough stick. What used to be 5-15 minutes of agony and stress that would regularly involve bringing in the good hands team with the ultrasound kit turned into basically nothing. Ports can be used for labs as well fwiw. - If you are a tough stick and don't get a port, don't be afraid to ask for the ultrasound. - If you're inpatient for some reason and your chemo appointment is getting close, begin asking your doc and the attending about it ahead of time. Some hospitals will do an infusion in your room, some won't...and in those cases you might just miss a dose. - If you regularly need saline to keep up hydration there are in-home nursing facilities that can do this rather than having to go to the hospital every time. They can teach you to 'de-access' the port as well, so that they don't have to hang around for the hour to get through the bag. - Emesis bags are available on Amazon by the case. - If margins are starting to thin, make sure that there is regular bloodwork being done that covers iron, liver function and other diagnostics that are relevant to your situation. Some of these things are slow-movers and can interfere with your treatment plan when they get out of whack. Most of these are available without a referral/prescription from a local hospital or lab. - If you end up with a hysterectomy or because of your treatment have hot/cold issues in bed, the BedJet is absolutely amazing. https://bedjet.com/ https://bedjet.com/
- trynewideas 6y agoThanks for these. I really want to call out: > make sure that there is regular bloodwork being done that covers iron We've been fighting anemia during treatment, and regular tests have resulted in blood transfusions that kept us on schedule and ultrasound scans to locate and treat the blood loss.