Day 8 Gem

[rjhs]

Hello ladies, not posted for a while but an avid daily reader. Just started 3rd line gem/carbo and I felt much worse than on 2nd line carbo/caelyx which rather surprized me. The first 8 day top up had to be abandoned and the 2nd combination infusion postponed twice due to the dreaded low bloods. My question, which I meant to ask yesterday at hospital but forgot, is does one get steroids with the weekly top up? I have several things planned for next week and if it is not cancelled again the steroid high may be quite useful. Rita

[Hidden]

Snap!

I was due to have day 8 gem (also 3rd line )yesterday and my neutrophils were too low. I had been prescribed the G-CSF injections but wasn't due to start till tomorrow. Plan B is injections yesterday and today and hoping this will be enough of a boost to have day 8 tomorrow and not mess up the whole chemo schedule.

I'm rather surprised at how energetic I've been feeling...... so hard to know what to expect, isn't it? Very slow release steroids?

I know you had problems last time around with your neutrophils too. Are they not giving you G-CSF?

This my fourth lot of chemo and I had a look at previous bloods. The neutrophils yesterday were the lowest they've ever been. The nurse told me they expect them to drop generally after day 8. So it sounds as if both of us are oddities! Or they need to revise their thinking.

Chemo takes over your life under any circumstances, but these wasted journeys and postponements are the end. Yesterday was my third wasted trip in relation to this round of chemo.......grrrrrr

No, you don't get steroids with day 8. All I'll be getting is an anti-emetic.

Good luck with it x

[trix70]

Hi, I am on weekly Taxol and no steroids given. Side effects are supposed to be less and they are not needed. But I have found that it's not quite as symptom free as I was lead to believe, a couple of steroids would have helped. I have had two so far.

X

[Di16 in reply to trix70]

I was on weekly Taxol last year, & was given steroids just before each infusion. I got the impression that was usual, but they did reduce the dose as I wasn't getting much side effects, because I'm diabetic, & the steroids can affect diabetes. They told me it was unusual to reduce the dose.

Di

[trix70 in reply to Di16]

Hi Di, giving steroids when on weekly seems to vary from hospital to hospital. My husband is type 2 diabetic and when on chemo the steroids played havoc with his sugar levels.

Best wishes. Trix

[Whippit]

Dear Rjhs

I had the carboplatin/gemcitibane combination for second line chemotherapy and was told there was no need of steroids on the Day 7 top-up of Gemcitibane.

One question comes to mind though - why aren't you getting GCS-F injections to stimulate the production of white blood cells. Gemcitibane is well known for deranging the bloods and particularly for knocking the white blood cells. Patients are at a 10% risk of infection, hospitalisation and death if they become severely neutropenic. The injections cost the NHS approximately £250 for five and compared to being admitted as an inpatient with an infection it is a bargain - plus from the patient's perspective they will not have to delay their treatment. I was given the injections for my second to final infusion of gem and carbo so the total cost to support all six infusions was £1,250.

I'm aware some NHS trusts now have a policy that GCS-F aren't given after first line chemotherapy. That's ridiculous for patients with ovarian cancer because most of us don't suffer too badly with low white blood cells at first line with carboplatin and paclitaxel. I think the policy should be challenged on basic economics as well as patient safety.

I've just re-read my post and it looks like a bit of a rant so I apologise. I hope though it might be helpful for you. I'm off to hospital on Monday to support a friend with pancreatic cancer who's been refused GCS-F so have been looking into this topic and preparing a case for her to receive this drug. It really shouldn't be that patients are put in the position of arguing the case for fair treatment.

I hope the regime gets easier for you. I found it very tiring but it was all the travelling back and forth and having to go to hospital 4 days every 3 weeks. As Mac says, traipsing to hospital to discover you can't have treatment is the pits.

sending loads of love xx Annie

[Hidden in reply to Whippit]

It's another cases of us all being individuals not statistics, isn't it?

I had problems with my bloods with carboplatin alone, resulting in several transfusions (also a cost) as well as delays due to WBC.

This informed the decision for the G-CSF at second line. I'm not sure I'd have got it at 3rd line if I hadn't pressed for it, because of those earlier experiences. The chemonurse gave me to understand that they have become more flexible in how it's used. I'm hoping this may translate into me having fewer ( and cheaper ) injections this time round. It does become very uncomfortable.

I wonder whether one's normal position in the bloods range makes a difference to how hard the chemo hit it. Having started keeping track of mine, I realised that,, except for platelets, my starting position is at the bottom end of normal - so not very far to fall....

Isn't it wonderful how, the older you get, you realise just how much you don't know. BTW I am really impressed at the newly scientific tone of some of your communications. That course really paid off! xxxx

[Whippit in reply to Hidden]

haha me? scientific!?? I have to say the course on the Molecular Biology of Cancer was an eye-opener and has helped me understand a lot more about the disease.

I think I've just become more discerning and questioning all round. What a shame I wasn't in the early days when I had such shoddy treatment. If I can at least share my knowledge with others to prevent them being strung a line I can find a positive in my bad experiences.

xx Annie

[rjhs in reply to Hidden]

Yes keeping a track of blood counts is a a good idea rather than just looking at the onc's computor. I have always struggled along at the bottom of the scale I think with platelets and neutrophils. This time the neutrophils had to stand up and be counted manually! As you say it would have been interesting to know where one started before this fall from grace and dose reductions. Rita

[Lovis]

No, no steroids. Lovis x

[rjhs]

Thanks Ladies, I had a horrible feeling that the one time I would have welcomed steroids they would not be forthcoming. I didn't follow it up yesterday because I had understood the onc to say he would not try the top ups again and would reduce the dose and the admin staff who deal with appointments had gone home.

I had already asked about GCSF injections after the first cancellations but as I had had them previously and he didn't want to repeat the 'fluey' the side effects he preferred to wait until bloods came up by themselves (or finance issues possibly). I shall be definitely be following this up if postponements go on.

I had already had a five hour wait on Monday to find out that a slight swelling seen by the District Nurse who was dressing my PICC Line was absolutely nothing. This was my own gut reaction, but you know how it is, even after three years' of treatment never completely certain of the significance of things but a more hospital centred treatment than I had bargained for so far but perhaps inevitable given how much treatment we have already had.

Rita

[LittleSan]

Hi Rita, I didn't have steroids on day 8. I only managed 2 top ups of gem though because despite GCSF injections my neutrophils took such a hit after day 1 of cycle 3. The treatment was still successful though.

Good luck with it all. Much love Sandra X x

[rjhs in reply to LittleSan]

Thanks Sandra, I thought that might well be the case and I won't be at all surprised to get the cancellation call this week too but hopefully the outcome will be as good as yours Rita xx

[LesleyGreengran]

That happened to me a couple of times on gem/carbon and I missed the last gem only altogether. In was alright on that regime at first but the side effects built up over the course of treatment.