Hi there
So far I have had four chemos of Taxol. After the first I was neutropenic and had to go to hospital with an infection. After the fourth I was admitted again with an infection over a week ago. At the moment I am on leave from hospital and have to go back tonight Hopefully I will be discharged on Tuesday. It took a while to get my temp. down by finding the right antibiotics. I am now feeling very low. My chemo is being put back and I am worried that I will get yet another infection after the next chemo. It seems I will never get to the end of the chemo. This time my neutrophils were not exceptionally low.
Alison
Hi Alison
Ihave just finished my 3 x Tax and was admitted to hospital after my second one, and kept in for 1 week with my neutropenic levels down 0.08. Am doing OK, although bit worried at mo, got bit of snuffle and scared might turn into infection, as my daughters birthday party saturday, birthday on Monday and don’t wanna miss her birthday as missed my little boys 1st birthday when in hospital. I ended up having only 80% of my chemo last week so hoping will be ok. Gonna check my temp later.
Don’t think there is much we can do to avoid this as i have stayed indoors since being released from hospital near enough, been to no baby groups etc, to try avoid infections.
I hope you are OK and things improve for you. Maybe they can give you some advice that may help.
Love
Dawn
x
Hi Alison
You’re not having a good time. I’ve had antibiotics twice on chemo now and I’m still waiting for chemo 4! I don’t think there is very much we can do to stop them, have heard that many of the infections are due to the bugs we normally live with quite well. Maybe you could ask for the neulasta injection to boost your white cell count - this is 24 hours after the chemo. And/or antibiotics to either take ‘just in case’ or to start as soon as you begin to feel poorly?
hope you’re feeling better soon
hugs
x
Hi Alison,
I picked an extremely rare infection (noone knows where from, the hospital hadn’t seen it in years), called Rhodococcus equi. This is basically a form of equine pneumonia and is more common in AIDS patients. They wanted me in hospital for three weeks on intravenous antibs but I talked them into finding an alternative so after extensive testing to find something that might work, I had two months of oral antibs at home. I did recover from the infection, which would most likely have killed me had not my immune system already been on the mend after the end of my course of weekly taxol. At the time I really thought I may die from it as it is apparently really hard to clear. A routine CT scan eventually picked up the problem, which the hospital had got nowhere with for a few months (had been getting fevers and very high temps) and found an unusual ‘hole’ in my lung. Taxol is notorious for low bloods and I have heard of other women getting very nasty bugs (pneumonia etc) whilst having a compromosed immune system. I do hope you are fully recovered and sympathise with you as I know just how horrid this can be. Taxol is revolting too, Good Luck!
Jenny
x
Hello Everyone thank you for your replies and useful tips. I do not feel so alone now.
Dawn I do hope that your temp. is ok and you manage to be at your daughters party.
Quisie I am going to mention your suggestions.
Jennywren I am so sorry what happened to you must have been very scary. Thank goodness you are now through it.
I agree with your sentiments about Taxol.
Good luck to all of us.
sending a hug to you all
Alison x
Thanks for starting this thread. I thought my wife was out on a limb - she has had two admissions to hospital in 6 sessions of chemo - all at the low point in the cycle. Is she unlucky or what?
She is on the TACT2 trial - arm 2 - 4 sessions of Epi + booster followed by 4 sessions of CMF
At the end of the Epi she spent 12 days in hospital with spiking high temperatures BUT a high white blood cell count. Clearly her body was fighting something but despite looking like a pin cushion from blood cultures at every spike in temp they never found what it was. The only treatment she had in hospital was Paracetamol - to lower her temperature - which we could have done at home! Finally they sent her home with antibiotics which seem to be aimed at sinuses (which are not her problem)
Now, halfway through the CMF she has just come out after another 5 days in hospital. When admitted she had a high temp and was severely neutropenic, but again despite bloods, stools and urine samples they never found out what it was. But this time they started her on powerful IV antibiotics straight away and her white blood cell count recovered but she still has terribly painful external piles which they won’t operate on until chemo is all over
Only two more sessions of chemo to go but we have the overnight bags packed just in case…
Hi Alison
I had infections from all my 6 FEC on the last one I became neutopenic and got Sepsis and ended up in hospital for 4 weeks. They run out of antibiotics to try and at my husbands insistance they did a CT scan and found a typical pneumonia.
To cut a long story short they eventually found I had a fungal infection, it was in my throat, water as well as my lungs. After 2 days treatment I felt much better.
It is rare I am told.
Hope this helps
Kind Regards
Jane
Hello everyone. I have just been discharged after 10 days in hospital and sent home with strong antibiotics. I am feeling quite low and worried that the same thing will happen again. There will be a big celebration when I reach the last chemo. ! Freddie your wife sounds similar to me with the spiking temperature. I do hope that she manages to stay infection free now. The hosp thinks that I had a chest infection but this was only a guess as the cultures did not show anything. Jane it sounds as if you had an awlful time, thank goodness your husband insisted that you have a scan. Its good to know that you are better now.
Hugs to you all
Alison
Alison. Congratulations on escaping! The trick now is to stay out - but how?
Neutropenia is new to us and no one at the hospital could tell us what the scale was - Liz went in at 0.01 and came out at 0.9 (and rising). In case you are as mystified as were were, Cancerbackup says:
"Neutrophils are a type of white cell found in the blood. Their main job is to fight infection especially infections caused by bacteria and fungi. So if your neutrophil count is low this means you are more at risk from infections. A low neutrophil count is called neutropenia.
Normally we have between about 1.5 - 7.5 x (10 to the power 9) neutrophils per litre of blood. But, usually when you’re told your neutrophil count doctors will just use the first part of this figure. So a normal count would be between about 1.5 - 7.5…
Neutropenia can be mild, moderate or severe.
* Mild neutropenia – between 1 and 1.5.
* Moderate neutropenia – between 0.5 and 1
* Severe neutropenia – below 0.5.
If you have neutropenia you should always contact your doctor or hospital right away if your temperature is high (38C), or if you feel unwell or have any other signs of infections such as a cough, sore throat or diarrhoea."
Thank you Freddie. I wish I knew how to stay out of hospital in future and would be very glad of any suggestions.
Its really good to actually know what the neutropenic scale is. I now realise after my first treatment I had severe neut. and this time mild but the infection was worse. Thank you for the link.
Best wishes Alison
My wife has been in hospital with two infections while on chemo (see above). Her CMF has now been reduced by 20% - apparently to reduce the risk of neutropenia / further infections. Anyone else had this?
She is on chemo trial TACT2 - arm2 and has had 4 x Epi + 2 x CMF. Just had day 1 of the last 2 CMF sessions. They said that as the usual course is 6 sessions total she should be OK - just continuing for the sake of the trial…
Hello there
My Taxol was reduced by 20% to try to avoid my neutrophils going so low. I started EC today and was surprised the Doc had reduced it by 25% so hopefully this will keep my counts up.
Hope the reduction helps your wife Freddie, keep in touch.
Alison