Our Situation Feels Difficult But Manageable

Hi everyone.

I thought I would send an update on how things are going for Paul and me and also pick your brains on a little thing.

So tomorrow it will be two weeks exactly since Paul had his first Carbo Platin infusion.

The first week was really, really difficult. Two days afte he had received the infusion, he started getting sick frequently, he also stopped eating because he didn't have any appetite but also felt that "it would probably come out anyway" and was afraid of that, he lost two kg in three days and we were both upset and anxious. So on Wednesday of last week we decided not to wait any longer and to go to hospital. Our oncologist was there and he took Paul's bloods - which were fine - and decided that he would give Paul something to take in combination with the Maxolon to stop the nausea and sickness. Because of the lack of energy and lack of appetite, he decided to put Paul back on 10 mg Prednisolone daily.

Since Paul's medication was changed/increased, he has been feeling better. He has been very tired; sitting down somewhere with a paper or a book doesn't work for long and then he falls asleep. But he has more energy and has no nausea or sickness and is eating okay and putting the weight slowly back on again.

Since yesterday evening, Paul has been sweating a lot. When we took his temperature (under the tongue) yesterday evening it was 36.9 and this morning it was 37.2 and he has been feeling a little chesty.

We are not sure if this is reason enough to go to hospital to get his bloods checked again. I know that they say that every little infection while being on Chemotherapy can be dangerous, but Paul often has those days where he feels a little chesty and generally ill and then it just changes again back to normal. Any thoughts on this?

Thanks, Mel.

10 Replies

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  • Glad to hear Paul is doing better now.

    For me, the 10mg of prednisone was really essential for dealing with the side effects of chemo. I tried two different times without it and was much more difficult. When I went in for my infusion, they would always ask me if I took the Prednisone before giving me the chemo.

    Do keep an eye on the temperature. A sustained temperature of 38 degrees C. is the maximum before you need to go in. I was warned several times about this. They told me not to wait because things can get very serious. The biggest concern is neutropenia. I had to go in once during chemo, but fortunately everything was OK.

    You probably already know this, but I'll just put it out for anyone who needs it:

    Neutropenic fever is a single oral temperature of 38.3º C (101º F) or a temperature of greater than 38.0º C ( 100.4º F) sustained for more than 1 hour in a patient with neutropenia. Upon initial evaluation, each patient should be assessed for risk of complications from severe infection.

  • To expand slightly on the comment gregg57 posted. With a temperature of 37.2, and normal blood work, Neutropenic fever doesn't seem to be a concern at present.. Continue to monitor his temperature.

    To contrast, when I went through chemo, I came down with a temperature of 100, (37.7). When I went to the hospital, my white blood count was 0.5 and my ANC count was 0.0. I had no immune system. They put me in isolation for five days until my wbc rose to 2 and my anc went up to 1.5.

    It's a good thing that Paul has a "good" blood work outcome. Neutropenia is defined as an abnormally low count of a type of white blood cell (neutrophils). That being the case, Paul's good blood work rules out Neutropenia at present.

    To repeat, continue to monitor his temperature. If his temperature stays at or above 38 for an 8 period, I would strongly consider taking medical action quickly.

    Disclaimer. My only medical experience is what I have been through, I have NO medical training at all.

  • You already have good advice from gregg57 and nameless9999, so I'll just extend my best wishes to both of you. I hope he feels better and you are able to relax a bit.

  • Excellent advice from Gregg and nameless regarding temperature, A high temp during chemo is reason to call the Drs. emergency number in the middle of the night. If white blood count was down I wonder what the Dr thinks about a nuelasta shot to boost wwbc and immune system, which is a known side effect with carbo. Also since the anti nausea med worked so well it , I wonder if the would just always drip a bag of antinausea with chemo, that is what they do with me and I never had Nausea, though I also never did carbo. I wish you the best , and thanks for keeping us informed.

    Dan

  • Hi Melanie

    My husband was on the dox/Carbo combination. His doc always stressed that if he ever got a temp higher than 100, to go right to the ER. Well one night 10 days after his last infusion he spiked a fever. I took him right to the ER, and sure enough he had neutropenia. He was in the hospital for 5 days. This can be very serious since of course your body has basically no immune system to fight infection so please watch him carefully. Also, I’m glad he is getting the prednisone. My husband took it before, during, and after every infusion and it made a huge difference in how he felt.

    Good luck with all of this. I know how scary it is, but you will get through it! Just make sure he eats well. I really cooked up a storm for my hubby, and so did his mother lol!

    Take care.

  • Thank you for your posts and thoughts.

    Paul's temperature has gone up to 37.5 and he still has this heavy feeling on his chest.

    So he decided to go into our nearest hospital this morning to get his bloods taken and chest xrayed, just in case.

    Mel.

  • Hi Mel, thanks for the update, it's so heartwarming to think that Paul's fight may have eased somewhat and your worries too.

    God bless. David.

  • Melanie, I'm glad Paul is feeling better. I was on 10mg a day for prednisone which helped tremendously.

    Nick

  • Hi everyone.

    Thank you so much for your thoughts/comments on this one.

    So we are just back from hospital. We decided to go this morning when Paul's temperature was 37.5.

    His bloods were taken and I am over-joyed to say that not only is his blood count good but also the liver markers are much better. So the Chemotherapy is definitely working!

    As for the temperature, the doctor thought that it might just be a little virus and he didn't give Paul anything. Just wait, rest and drink plenty was his advice. And I think that's good advice.

    We will of course continue to monitor his temperature.

    Thanks again everyone!

    Mel and Paul.

  • Mel and Paul, I am so happy to hear Paul checked out good at the hospital, and that you brought him there with no hesitation this morning, liver numbers sound very good and glad to hear he had good blood counts, this is awesome news.

    Dan

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