Dear All
I have just returned from my second chemo which almost did not happen and my white cell count is low and my bone marrow is not responding well. Don’t really understand the bone marrow thing, can anyone explain a bit more? Anyway I asked if there was anything they could do today as 3 weeks seems like such a long time to wait, and they did my chemo (FEC) but reduced it to 80% and armed me with antibiotics which I need to start taking on Sunday.
Has any one else encountered this?
Thanks
Cecelia. x
Not yet…just wanted to send a big hug!
Thankyou Babyboo! Good luck with the new anti emetics! I’m sure they’ll find something to suit you, and remember to take them even if you don’t feel sick, that’s apparently the trick.
Cecelia. x
Hi Cecelia
I also had low white cell counts. There are two problems that this makes 1) you are more prone to infection 2) may have to delay treatment as another one would make them go even lower.
Chemo affects the white cells (neutrophils are a type of white cell important to fight infection) as they are rapidly growing cells (grow in the bone marrow and released when needed). But the numbers ofetn recover before the next round.
After my 1st treatment my cells dropped and it was fortunate I had taken myself to the ward for another reason (there arent really any symptoms of low neutrophils themself, I think). They did a blood test and the neutropjils were 0.1, however I wasnt ill as such so they let me home with antibiotics to take. I didnt get an infection. The same happened the 2nd time. They too gave me antibiotics then to take a few days later. Again I didnt get an infection.
However, I was severely warned to ring if my temp went over 37.5, as with low neuts you need to be careful at the 1st sign of infection.
From what I understood a delay in treatment would only be for a week or so, until your neutrophils come back up. For some people the 3 weeks inbetween FEC just isnt long enough.
Also understood that this was not a surprise with FEC.
Hope this helps
Jane
Dear Jane
That helps me immensely, thanks so much for your reply. As I say I did ask them to do my chemo today and they did at a reduced rate, so from what you say when I take my antibiotics I can avoid infection.
Maybe I’m one of those people where the 3 weeks isn’t long enough to recover but I do feel quite well. Is there anything you can do to improve the situation, boost your immunity for example?
I am armed with my digital thermometor so if I feel like I have an infection then I know what to do.
Thans so much for the advice
Cecelia. x
Hi Cecelia
I did avoid unhealthy sittuations - little boy goes to nursery, but I try not to be the one to take him. Aslo OH takes him to soft play and any parties that are going on. On the other hand we did have a party for him at home on his bday, but in 3rd week after FEC. Diet wise its much like beong pregnant - avoiding anything that could cause an infection. But I have still been to restaurants that I know etc.
Those digital thermometers are great, fun for all the family.
Boosting the immune system - only way I know of is with the G-CSF drugs that can be given (neupogen and neulasta). I received this for the 3rd and subsequent rounds as after cells dropping for 2 rounds they said they would each time.
Have these drugs been mentioned to you ? Mind you they didnt mention them to me until they were prescribed on the 3rd round. Need to know basis in operation I think. I understand some oncologist dont like the G-CSF drugs as they too can have side effects. Its all a blanacing thing I suppose.
I find it hard to come away with much info from the oncologist as I see him 5 days after chemo when I am like a zombie. I ask the nurses a lot whilst they administer the drugs each time.
Take care
Jane
I was given g-csf injections last chemo as my white blood cells were low. When i went for my FEC this week i was automatically given 7 days worth of injections to avoid it happening again. You inject them (or in my case hubby does it) into your tummy -they don’t hurt at all. Its worth having them as i felt so much better having them
Jools
Thanks Jane, I’ll ask about those things as they haven’t been mentioned to me. Complimentary therapy has been mentioned to me, I asked my onc about it today but they didn’t know much. I’m going to look into Coriolus, a herbal immune booster which has had great success in Japan. I guess you are right though, we know what to do, sensible eating etc. The odd guinness to give me iron!
I think the traditionalists at hospital are not so well versed or even open to anything alternative but I’ll do some digging. I’m avoiding takeaway foods like the plague and constantly washing my hands with that gel stuff. If anyone sneezes near me on the bus I get paranoid! So much to learn…
Thanks again
Cecelia. x
G-CSF injectiosn do work for most people.
Some oncologists and some Trusts really don’t like them…because of the expense. Neulasta costs about £800 a shot i think.
I have private medical insurance and my insurance company has been willing to pay, but I had to really argue with my oncologist to get neulasta this time. When I was last on chemo in 2003/2004 (different hopsital, different onc.)got injections as standard. There is a real postcode lottery around G-CSF which stinks.
Jane
Jane
Hi Jane
Was all or your treatment private? I can get this through a work incentive, but have been happy with NHS so far. Do you think with a referral I can get this drug privately?
Cecelia. x
Hi Cecelia
I do have private HI, and am going through this as a private patient. But am not sure what difference it makes - youd like to think none. I do think I would have had the G-CSF whatever. I revciev all of the treatment in the ward same as an NHS patient etc. I didnt feel money was the issue with G-CSF, its down to oncologist I felt.
Sorry if I confused things - seems 2 Janes commenting, both with PI.
No worries, Jane68 and JaneRA, got a bit confusing. but all good, i’ll ask my onc, and see if i may need to take some of the treatment private. Thanks for all the input my girls
Cecelia. x
Hi Cecelia,
just finished my last round of FEC and had the same problem all through chemo, right from number 2. After two delays, I got the G CSF injections prescribed but they made me feel very ill, like having the flu for the first three days, apparently it is something that has been reported to my onc a lot recently. They do help in avoiding more delays. In my case, so far (touch wood) I have not had an infection and refused to take antibiotics without reason. In any case, if you do need to have the injections, I hope they don’t affect you badly and in any case, they get better after day 3.
Good luck!
I am under BUPA and have ten days of Granocyte injections, starting on day 3, which I now administer myself after being taught by the district nurses. Another option maybe??
Anne
Thankyou everyone, I will put some of these suggestions to my oncologist if this happens to me again. Hopefully it’s a one-off
Cecelia. x
I was thinking about you today Cecelia,
I am to have my bloodtest on Wednesday…mmm…fingers crossed everything is as it should be.
Hugs to you xxx
Thanks BabyBoo
Hope it went well today?
I have mine on Friday so fingers double crossed for both of us.
Cecelia. x
How are things Cecelia? I have been away for a week but thinking about you.
Hi Babybooo
thanks so much for thinking about me! I saw my Onc on Monday after another blood test and she said that my count was back to normal, in fact she said it was extremely good… so I am more than relieved about that. Just need to keep doing what I’ve been doing and hope it stays good for my 3rd (! can’t believe it!) chemo on Friday 3rd. the Onc offered me G-CSF injections if this continues but hopefully it’s not necessary. Hope you had a good week?
Cecelia. x