I had my first dose of carbon caelyx for my first recurrence on February 1st. It really hit me hard and completely wiped me out. When I had my blood tested a month later my neutrophils were 1.06 so I couldn't have chemo and I went back last week. My levels were 1.6 so I had another week's delay. Today it was 1.34 so it's another week to see if it rises. They were going to give me injections but these can apparently can worsen joint pain so the onc team want to see if it rises on its own next week. Has anyone else had this problem. I worry about the time between treatments and how effective the chemo is going to be.
I feel so tired and wiped out despite chemo being 7 weeks ago. Has anyone got any advice please?
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Welshandproud
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I am also on Carbo/Caelyx for first recurrence, but I am in my fifth month!
My Chemo team has a lower threshold for neutrophils. Mine just has to be above 1.
The past two infusions, the team called me on the day to come in for another blood test, because my neutrophils slipped below 1, but I tested up to 1.1 or 1.2 and that was high enough to get the infusion both times.
I do have a weird syndrome though, where my platelets remain quite high, so that is never a problem.
Red counts are always low, but not too low, so I am anaemic, but not in need of a transfusion.
I always feel awful the first week, but usually rally by the middle of the second week.
I get exhausted easily, but have no qualms about getting back in bed and resting.
I try to walk outside a bit when the weather is good and do small chores around the house.
I have a small business that I run from my computer at home and sometimes even sitting up and working exhausts me.
I have a strange side effect that is evident the first week and later, whenever I do too much.
I hear the sound of a machine rumbling outside and under the floors of my house. I can actually feel the machine vibrating under the floorboards.
At first I thought it was the water company digging up our street, but my family assured me nothing was going on outside.
It goes away with rest.
Also, carboplatin wrecks your Magnesium levels. Mine plummeted and I take special prescribed magnesium sachets to keep it up. That will make you tired also, so you should have that checked.
Thank you Laura for your reply. It's interesting that the cut off point for chemo varies from hospital to hospital. Ours is definitely 1.5. I made a typo in my post and typed 1.6 instead of 1.16. Your side effect sounds very strange. I've heard of people getting tinnitus after chemo but yours sounds really irritating. How long does it last? I'm glad that it goes away with rest. Thank you too for the heads up on magnesium. I'll get them to check it when they do my bloods in Thursday. I just feel so very tired all the time even when I wake up in the morning.
Hi, 1 is also the treatment cut-off at my hospital, probably they include how you are feeling in their assessment to treat. Ask about dose adjustment, that can help to manage the side effects. Hang in there and good luck for the next dose. xx
Thank you Bowradawn. It is strange how the cut off point varies. Yes we have discussed dose adjustment for the next infusion which sounds good. I'm just starting to wonder whether it will ever get back to normal for me to have my next chemo
I’ve had the gcsf injections after both taxol and carbo/taxol and they brought my neutrophils back up when they were below 1.5 .
I got a little pain but it was more generalised and although one night it was like sciatica that was it. I could have taken paracetamol but didn’t bother.
I’m expecting to have them after my last combined chemo next week and am very grateful for them.
The ache is your bone marrow being asked to work overtime I was told.
I really don’t want to delay treatment if I can avoid it although it did get postponed one week. This seemed a good balance for me.
Thanks for that Alex. I was hoping to be able to have the gcsf injections this week to boost my levels but the oncologist thought it wasn't a good idea since I had a lot of bone pain. I had xrays but nothing sinister going on thank goodness. Fingers crossed for this Friday.
Hi. I'm sorry you are going through this. I am also somewhat confused about the neutrafil blood count. In Australia they take neutrafils to 0.5! On my 2nd chemo I said I would miss a week if they were under 1. Both my oncologists said 0.5! Facing 3rd chemo soon and going to agree down to 0.75. Maybe neutrafils are measured differently in UK? Does anyone know? I am considering carbo caelyz rather than a 3rd carbo taxol. Sending big hugs.
Thank you for replying to me. Yes I am very confused about these varying levels. I really don't know if they are measured differently in Australia but it's all very odd to me.
My neutrophils always take a while to recover so I have now gone to 5 week intervals as I was tired of going for a blood test after four weeks then having to go back a week later. However I have been given my chemo when they have been 1.18 and 1.51 so I don't understand why you couldn't have it when yours were 1.6. Worth talking to your oncologist about.
I do feel more tired now I am on Caelyx rather than taxel but I just go with the flow and if I have to go back to bed for a snooze then so be it.
Good luck and I hope you have your next dose soon xxxx
Hi Jenny. I'm sorry that you are suffering with low neutrophils too. The caelyx does seem to give the neutrophils quite a battering. My typo 1.6 I'm afraid. I meant to type 1.16. I cannot believe how tired I am 7 weeks after the first treatment. Perhaps I need to stop feeling guilty for resting.
Never feel guilty - I think we have to accept what this disease does to us even though we hate it. My life certainly has a new normal and I can't do half what I used to as I get so tired but life can still be good but in a different way. Enjoy your rests and do what you can when you have the energy. xxxx
I’m sorry you are experiencing the low bloods on Caelyx. This happened to me too and is a very common side effect. I would usually have to go 6 weeks between treatments and often had the jab to bring them back up. This is obviously difficult for you with your joint pain. I felt really terrible after my first dose and had dreadful nausea and exhaustion. They sorted this with Emend the next session. After that it wasn’t nearly as bad as weekly Carbo taxol first line and I felt fine after 10 days and had a fairly normal life. Also the Caelyx worked well for me although the CA125 didn’t get as low as I’d have liked (18), our oncologist said she was quite happy as it was within normal levels. I took papaya tea, supplements and the fruit which may have helped a little. Also Japanese mushrooms for help with immunity but I probably shouldn’t be mentioning those things! I am not saying they treat cancer though, just help with getting through it. Check with Dr. C first. She was lovely and let me do what I wanted, just said don’t take high doses of anything. Ginger, peppermint tea, bone broth, garlic, green vegetables, all good and nourishing for the body.
The good news is I felt so well after treatment finished and I am now on holiday in the Maldives! I haven’t flown long haul for over 5 years and managed fine, it is wonderfully relaxing and the swimming in particular is heavenly. Try and fix a lovely treat for yourself for say a month after treatment finishes and before you go on a Parp if that’s your plan going forward?
Wishing you all the very best and hope things improve for you soon, take care Sian. Love Sophia x
Thank you so much Sophia. That really gives me some food for thought. I think I'll pay a visit to that natural grocery store on Bath Road. I'll also talk to Dr C. I am so pleased that things improved on the carbo caelyx. I'm feeling so exhausted at the moment. I wonder how I'll get through the regime.your Maldives holiday certainly gives me inspiration. Thank you xxx
Hi Chemo Buddy! I also started this chemo on 15 January for 1st recurrence. It, too, wiped me out and even hospitalised me. I, too, had chemo postponed because the blood tests showed me at 0.3!! I really was quite unwell at the time and had the most horrendous ulcers. Could hardly drink or eat. But I had had the injections which, in theory, should have improved the situation. The joint pain, particulary in the long leg bones, is not pleasant, but I shall still have the injections again because I feel they are there to help so I’ll have them! Now two weeks after chemo 2 my bloods are 1.3 (our hospital’s cut off point is 1.5), so they should be ok for my next session in two weeks. Incidentally the dose was reduced to 75% as it knocked me out so badly. I just hope it’s as effective. And the fatigue is bad but manageable, although my ability to stand (still) is zero. Thinking of you and wishing you well, but do talk it all through with your medical team. Love & hugs Carolyn x 💐🌸🌼
Thank you Chemo Buddy. I'm so sorry that you have been through so much with this treatment but pleased that things have improved for you. You certainly have had a really tough time. I hope that my levels will be up this week and that they will be able to do the chemo on Friday. Sending you lots of love xxx
Home early from chemo because my neutrophils were too low so it was postponed for a week again. Hopefully getting the injections next week for the double chemo the week after.
Oh I'll keep my fingers crossed for you too. It is so irritating that you get yourself prepared for something unpleasant then it doesn't happen and you have to go through the exact same thing the next week. Sending virtual hugs xx
Just heard they’ve let me miss last weeks rather than delay it so I’m back on track for last double chemo this Friday. Not looking forward to it or the final two taxols but it’s good to see some light at the end of the tunnel. Then the scan, results and letrozole.
Hello, I started Caelix about a month ago so now preparing for my second round. I am neutropenic so my white blood cells often are too low. The only way to get them up is GCSf injections for three days and then it is fine again. That means that instead of the Friday being the chemo day it will be Monday. A better day all around as I am seeing my oncologist on a Thursday.
Sounds good. I hope that I will either get the chemo or the injections this week. I am getting very fed up of these constant delays . I worry that they will give up on testing.
Hi , my hospital’s threshold is one so I just about made it each month on this combination .I also drank Papaya tea each day , of course I can’t say for sure that it kept my numbers up but there seems to be a lot of ladies on here that take it .Hoping you will be able to continue without too many delays .Julia xx
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