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Jesse L.

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I've been talking/dreading this for so long I thought I would start a new thread... I may be early on surmising my situation, but so far so good. The infusion time went very well...all accept for the RN staring at me not four feet away during the entire infusion. Oh, she was nice enough but it seemed as if she was waiting for me to drop over any second. She had me so intimidated about every last little side effect from Carbo/Alimta, that right after she mentioned I may get rough scaly palms on my hands, I started looking at them waiting for it to happen. She burst out laughing...all I could do was smile but she had me so wired, I half expected that it would happen immediately! Honestly all I wanted to do was read my book, but little of that went on... The infusion center also arranged a phone call on 4/9 to check on me and to come in on 4/12 for blood counts. With further appointments on 4/13 and 4/15 for other reasons I'm starting to think I live at the VA!

So, I went in at 0830 and was out of there by 1245. I walked out of there feeling pretty good and here it is 2200 and I still feel good. I am kind of wide awake probably from the dexamethasone but other than that nothing. I kind of expect to not get a lot of sleep tonight.  Now there is most likely a contingent of folks out there that are saying you just wait...it's going to get worse. I fully expect it might but I'll be ready. I expect perhaps some stomach issues, but I got Zofran, Mira Lax, and other stool softeners for that and I fully expect to crash 😴😴😴 on a coming day soon. 

Some time previously I asked the VA if they had any links to cancer support groups and they basically came back empty to that request. Unbelievable...??!! Well, today I put in a plug by telling the NP who runs the infusion center and the Chief Pharmacist about this website. They had no idea this existed, but they did say they would check it out and if they liked it they would pass on the link to other patients looking for support. 

Speaking of plugs, thanks LexieCat; so far your chemotherapy insights have been spot on. Muchas gracias too to Tom for the tips on same and here's hoping that if Grammaa reads this I hope her first chemotherapy session on 4/5 went as well as mine. I know she was worried... For that matter I hope everyone does well...shoot for NED...I am!!

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Hey, glad to hear things went well. This was your first infusion, so I"m not surprised they watched you pretty carefully--I think it's pretty rare but a few folks do have bad reactions to the drugs during infusion. Now that you've gotten through the first without problems, you'll probably get more alone time next time. Even after all this time, though, the nurses double check by having someone else come and check my name and the drugs I'm given each time they change the bag, and I get my vitals taken in the chair at least twice. 

It seems like the hard fatigue hits about 3-4 days out and lasts only a couple of days. And I have NEVER actually vomited as a result of chemo. I take ONE pill if I start to feel queasy and then no more unless I feel queasy again. You want to take it before you feel like you'll vomit but AFTER you start to feel queasy--that's how you avoid taking too much (and the ensuing constipation). 

The other effect that bothered me (and seems to affect quite a few people) is brain fog or chemo brain. I noticed it mainly due to my job (involving complex legal analysis). It can make it hard to do things requiring sustained mental concentration. Unless it affects your job or something, it's more annoying than debilitating. I also used to (and sometimes still do) get a bit of edema (puffy feet/ankles) the first few days later.

As I said, keep a log of any effects you experience and let your docs/nurses know what's going on. 

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Thanks for the reply LexieCat... So far so good; surpringly good actually. Slept about 6 hours last night, woke up and had a good breakfast this morning, and am following medical orders by drinking lots of fluids. Not really tired (yet?), no stomach issues (yet?), and I'm going to shoot for a four mile walk this afternoon. Now, we'll see if I get that far, but that's the plan anyway.

I haven't experienced any type chemobrain yet but that doesn't mean it won't happen. From everything I've read they all stated that isn't a permanent situation... Maybe it is; let me know? As for me I'm retired so I don't need to think in terms of any complex issues anyway. And I normally leave a lot of notes telling myself what to do days in advance anyway; comes with getting old I guess. 👀

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Well, hard for me to say whether it's temporary--I'll be doing this for the foreseeable future. Another thing to remember is that side effects can change over time. They might get better, they might change, or they might get worse with subsequent infusions. 

I wouldn't worry too much waiting for particular effects to hit. And you've got a nice short course of treatment, so chances are you'll be fine even if you have a crappy day here or there. 

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So happy to hear this! I joined these fantastic folks on this great site on behalf of my Boyfriend and they are a fountain of knowledge and support! Hope you keep tolerating your treatments, well. Boyfriend has two down and very mild side effects... just worn out. 💜

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