Carbo/Caelyx: experiences please! Thanks

[Lindaura]

Hi lovelies,

As you know, I have recently begun the Carbo/Caelyx treatment for first recurrence.

After a little glitch on the seventh day, I have been feeling amazingly well!

Because I was so sick during first line, Carbo/Taxol, this is all new to me and I cannot figure out how to behave!

My tastebuds and digestion have returned to normal and I can overeat easily.

I tire quickly, but I can do lots of tasks around the house. I am thinking of hoovering tomorrow!

This is my 14th day after first infusion,.

My questions are:

How normal a life did you lead on this regimen?

Did you have to worry about infection if you went out into the world?

Did you drive a car?

Did you lose your hair?????

Did you have up and down days?

Did fatigue get worse after your 3rd or 4th infusion or did you stay the same?

Thanks for your helo,

Laura

[Lewisriley47]

Hi I personally found this the easiest of chemo to tolerate and I have had 4 now on parp inhibitor. I managed to lead a normal life even going to Portugal mid treatment. I would say though that you need to moisture as much as possible as the skin becomes very dry also you are more sensitive to the sun Keep well hydrated all the best Pam x

[Juleswhee]

Hi Laura , I had my fifth infusion two weeks ago . I will try to answer each of your questions as it has affected me .

I am working while on this regime albeit I only work three days a week and swap my days around on the week after chemo ( I receive my chemo on a Friday ). On first line Carbo/ Taxol I didn’t work at all .

I have carried on normally with the rest of my life during the time on Carbo /Caelyx.

I haven’t worried about infection at all , perhaps a bit of extra hand washing especially while out , my toddler grandson still comes to stay and you know how many germs they can have .To be fair I didn’t take any extra precautions on first line either and I used public transport many times during this period .

I drive most days .

I haven’t lost any hair .

Day 4 and 5 are the worst but going on to your next question I have found more off days the further I have gone on with this regime starting from the third infusion .Nothing terrible but a bit more nausea now starting at day four and perhaps lasting until day 7 , tiredness lasts a bit longer too , this time it was day 14 until I felt normal .I am eating far too much on this regime as eating seems to be a cure for the nausea .

Of course this is just me and I unlike you I had no nausea at all on Carbo/ Taxol.

Julia xx

[Lindaura in reply to Juleswhee]

That is great news. Thank you so much.

It has just been hard to get my head around normal life in Chemo. But you have given me the push I need.

Thank you!

Hugs,

Laura

[Maxjor]

Hi Laura,

To answer your questions from my experience:

How normal a life did you lead on this regimen?

Very normal. I had two not-great days on days 2 and 3 post chemo, then a lovely 3.5 weeks or so that I felt completely normal.

Did you have to worry about infection if you went out into the world?

I based my worry on my white blood cell count and it never went too low. My onc was not concerned (but jokingly said don't kiss a sick person).

Did you drive a car?

Yes all the time.

Did you lose your hair?????

No! It did not even thin on this regimen.

Did you have up and down days?

No more so that I would normally. I never felt if I did that it was due to the chemo or the pre-and-post meds.

Did fatigue get worse after your 3rd or 4th infusion or did you stay the same? For me, I did not get fatigue with Frontline or with this regimen. I do have it with the PARP inhibitor and I did have it with immunotherapy but not with this.

My doctor also told me I can have Caelyx more times if needed (I responded well to this combo). Assume he means with Carbo as long as I would remain sensitive to it.

Wishing you continued luck, hoover away! oxox Judy

[Lindaura in reply to Maxjor]

Golly! Here I go!

Thanks!

[Petrolhead]

Although I have not had this combo I am worried about you. “Thinking of hoovering “. 😱

Hold that thought. There has got to be some perks to Chemo and not hoovering is one. 😁

Sorry can’t help in a serious way. Glad it is going ok for you.

Best wishes

Fay

Other half so used to hoovering now I have let him continue to enjoy the new hobby.

[January-2016-UK]

Is your other half aware that rooms have corners? Mine isn’t, just the middle gets hoovered. Still, it’s the thought that counts I tell myself.

[Lindaura in reply to January-2016-UK]

Oh that sounds familiar. I don’t think my beloved husband realised that rooms need hoovering at all. Maybe once every few months...

It’s a trial! But he is a great cook!

Hugs,

Laura

[Petrolhead in reply to January-2016-UK]

If I have enough gin (substitute any alcohol here) corners do not really seem important. But then again they were not really for me!

Fay