r/sarcoma Jul 28 '25

Support and Stories Chemo advice for gemcitabine and docetaxel

Hi friends, posting because the last relevant thread was over a year ago and I'm starting this after a big recurrance. Hope it's okay.

Can anyone give me the low down on their experience with gemcitabine and docetaxel? I'm starting a new regime with them tomorrow (day 1 gem, day 8 gem and tax, rest until day 21). I was previously on the red devil and ifosfamide which did tremendously well, but my lung mets decided during surveillance break to come back massively so we are hoping gem and tax will stop the party they're having and show them who is boss. Trying to mentally feel positive and prepared as much as I can, as my treating team were really shocked my growth has been so aggressive given my previous great response to AIM and age (34). So, gotta try something new.

I've heard that gemcitabine and docetaxel won't be anywhere near as strong side effects to manage like AIM was, but to still expect to be knocked out day 9. Any experience and advice with this combo? Thank you in advance.

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u/timewilltell2347 Leiomyosarcoma Jul 28 '25

So I’m in a clinical trial (phase III) but outside of the study drug/placebo I am on gem/tax. As far as side effects, mine may be a little different if I’m on the study drug but here goes…

Gemcitibine I don’t feel like it’s that bad tbh. I was on dacarbazine for almost a year and a half and after just gem it’s kind of like the other was for me. Mostly functional, pretty tired a few days, some headaches, maybe loose poops for a day right after infusion. But it can cause (and I got) ground glass opacities in the lungs which is inflammation that can make it very hard to catch your breath. Some people it can resolve on its own, or they are able to do dose changes I believe.

I feel like docetaxel is the rough one. ‘Splosive poops the evening after infusion and sometimes into the next day so get some Imodium. I’d really recommend icing hands and feet to prevent neuropathy, and I suck on ice chips too. The one time I didn’t I got mouth sores and really bad heartburn for about 5 days after the infusion. My vision got a bit blurrier in the evenings just generally, and it can make your eyes water like crazy- you might want to look up eye stuff with tax. I have some good lubricating eye drops and it helps with the irritation. Also there’s usually a couple of days where I sleep for like 15 hours straight. So tired from this one.

I’m not all that nauseous from either, but I have no appetite. Tax is the one that’ll make you lose hair if, you do. Not everyone does. At the dose I’m at I have a thinning buzzcut but not shiny bald. Remember everyone reacts differently, and I’m in a clinical trial. Also I’ve been on some sort of chemo for over 2.5 years so I’m pretty worn out generally. Overall it’s doable but I don’t think I could work 40 hours a week on it for sure. Wishing you well!

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u/Dremscap Jul 28 '25

Hey,

Not a doctor - just worked closely with a sarcoma specialist for a few years.

Gem/docetaxel is generally a maintenance therapy and is usually quite tolerable!

Some people transition to single agent gemcitabine if the taxane based therapy starts to cause numbness/tingling (or other toxicities). In our clinic, we had a nickname for gemcitabine: Gentlecitabine.

Gem/tax is still chemo, but it is mostly much easier to tolerate than dox/ifos!

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u/No-Forever4284 Jul 28 '25

Took this last Aug 2023-Dec 2023. Day 1 of Gem is manageable. You will barely feel any side effects. Day 8 of Gem/Tax is more tiring but you will get the hang of it. The most glaring side effect for me is around Day 13-15 with diarrhea, talked to my team of doctors about it and nothing immodium couldn’t fix. My neulasta shot (to get wbc up) was much more tiring for me because of joint/ bone pain.

I hope this treatment will be effective for you 🤞and may it be as uneventful as it was for me.

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u/Fransaskois 9d ago

I’m just finishing my first cycle of Gemtax and I was looking up what other people experienced on here. When I read your post, I had to double check and be sure I wasn’t the one who wrote it, as I’ve gone through the exact same experiences. How did you manage your first cycle? I got the white cell booster and I think that that’s the worst part for me. The body aches are brutal!

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u/imperpu 3h ago

Hey, I'm so sorry for the delay getting back! My first cycle was brutal unfortunately, unexpected by my team entirely so my dose strength was lessened. I got mucositis to the point of severe tonsillitis so was stuck in hospital for a fortnight while with a feeding tube and healing 🫠 it's likely a combination of new chemo starting so quickly after finishing some chest radiation, so please don't be fearful for yourself, I'm just s lucky bad timing of everything. I've just finished my second round now and it's was much better, though it's looking like I'll need a transfusion or two.

How are you handling the muscle aches? I can't tell if it's the injection or the steroids that are doing a bigger number on my body. DM any time 🩷