Weekly Taxol

[PhillipandBettykid]

I had my appointment with my oncologist yesterday and was expecting them to say that it would be the end of chemo. The carboplatin has stopped working but they are now suggesting weekly doses of paclitaxel. I am not curable so it will only be a case of keeping the cancer down. I haven’t had weekly chemo before and wondered how it works. Do you have to have a blood test every week as well as the chemo? My dilemma is that I live on my own and getting to the hospital isn’t that easy. I can have the bloods done at the local hospital but given that I have limited time left I am concerned that I could end up with the treatment taking 3 days (allowing for side effects). That means that effectively it’s taking away half of my life. I will discuss it with the oncologist at the next meeting but I wonder if any of you have had weekly Taxol and what your experience has been. Are the side-effects less with the weekly regime as they claim?

[Irisisme]

Hi PB,

I can tell you all about weekly Paclitaxel as I’ve been on it since early February and was told I’ll be on it until end of August (see my post).

I’m also ‘palliative only’ although the Paclitaxel has so far had a “good partial response”. I had an allergic reaction to Carboplatin so that’s no longer an option.

Yes, you do have to have weekly blood tests too (I have a PICC line so that has to be flushed). I intend to take a break at the end of June for a holiday (although the line flush can’t go for longer than 10 days).

It’s all about balancing what will keep the cancer down and our quality of life. I’ve got away lightly with side-effects so far but there will always be some. You say you have limited time left but it could be longer than you think. I didn’t expect to still be here now after my diagnosis in October 2016 but I am still here and expect to have a few more years left.

Perhaps you can sort out transport with your chemo unit. OR do they have a mobile cancer care unit? Bloods maybe can be done at your GP surgery (although not via a PICC line). Have you discussed transport issues with the Unit, nurse or even your local Hospice (hospices are not just for end of life but also for those with a life reducing condition, like us)?

I have to admit I’m a bit fed up with twice weekly visits (and I do have a hubby who provides transport). I’m going to decide at the end of June what I’m going to do, maybe all of July off treatment then back on it.

Don’t give up on yourself yet, being incurable means you’ll have to live with OC but if your oncologist is offering you weekly Paclitaxel he must believe it stands a good chance of reducing the cancer, which means more fun can be had for longer.

Good luck with the balancing act, it’s not an easy decision.

Sending hugs,

Iris 🤗🤗

[Di16 in reply to Irisisme]

I had weekly Taxol a few years ago & found it easier than Carboplatin. I had blood tests the day before at my local hospital, though I didn't have a picc line. If you don't want the extra day, would it be possible to have bloods taken at your treatment centre on the day, before having chemo? I know it would mean extra hanging around on the day. The hospital where I was treated often did that. I only had bloods taken the day before because I had opted to have the chemo at a health centre that took chemo patients 1 day a week to relieve the numbers in chemo unit a bit. Di

[PhillipandBettykid in reply to Di16]

Thanks Di for your help too. I don’t have a PICC line either but am wondering whether I should get one. My veins are pretty shot after all the chemo I have had. I’ll chat it over with the Doctor

[PhillipandBettykid in reply to Irisisme]

Thanks Iris. This is helpful. I will use hospital transport. I am assuming I can get the bloods done locally under my own steam. If the side effects are not too bad I will give it a go. As you say it is a balancing act. I was diagnosed with stage 4 in 2014 so have done well. I’m tired of the battle a bit. You know how that is. Hope you go well with the decision about having July off. Sometimes we need a holiday.Thanks,

PB

[Irisisme]

Hello again PB,

Maybe you can have bloods done on the same day, as Di says. My own chemo unit prefers to have them done 2 days before the infusion but that is for their convenience.

I should mention that my treatments only take a couple of hours even with waiting time. Initially it will be longer because you will be given Piriton (which is sleep-inducing) and steroids. Steroids are a mixed blessing but you’ve probably had those with Carboplatin, after a while they will be reduced.

One side-effect to expect is hair loss, which you usually don’t get with Carboplatin. It doesn’t bother me much, when it starts coming out in clumps I have my head shaved - this is my 3rd time and I still have my first wig but I’m more comfortable with turbans or scarfs.

I have never suffered with nausea or mouth ulcers but do get dry skin, same as with most chemo drugs. This time I do have some neuropathy but it’s not too bad and I think it’s more common with Carbo than with Taxol.

Just remember that the weekly dose is a lot less than every 3 weeks so the effects are less too, they won’t necessarily wipe you out as can happen with the greater dose (although I lost a day every week for the first month) . Also, my oncologist has said that if the neuropathy becomes more of a problem my weekly dose can be reduced, this is always an option if you get bad side-effects.

I hope you can sort out your transport problem as I think you will find weekly Paclitaxel very ‘doable’; my only issue is the length of time I’m expected to be on it!

Looking forward to hear what you finally decide and how you manage.

Iris 😊

[Ruebacelle]

Hello. I was on it 8 months. You need to give yourself a booster shot days 2 and 3 to keep white count up. Side effects minimal and it tends to reduce then stabilize the cancers. Ifound it worthwhile. You might find out if home health care can infuse you...hugs from paris

[PhillipandBettykid in reply to Ruebacelle]

I am not sure we have home health care sadly. Glad you found it doable. Thanks for your help

[Ruebacelle in reply to PhillipandBettykid]

Where do you live? I believe in many countries they have home delivery systems its worth checking out.

[PhillipandBettykid in reply to Ruebacelle]

I’m in the UK near London. I haven’t heard of home infusions but will ask at my next appointment. Thanks

[PhillipandBettykid]

Hi everyone, I have had a few adventures over the last few weeks. I got some infection either bowel or urine, or possibly both. Anyway, they have deferred the weekly tax all for another week. After a long chat with Dr I have decided to give it a try. The tumours are growing slowly. It will be interesting if they can reduce the CA125. I have appreciated so much your advice on being able to chat with you. Thanks