I too had issues with low counts, but I found out that if I repeated the bloods 2 days later, I was above the threshhold, so I was able to get the treatments once that was evident. (They did try to cancel but I insisted and they went along with it, especially as my doctor was willing to back me up.) This way of going about things may not suit everyone, it would depend a lot on the general picture and on other blood values, so it's not that I am recommending it, just pointing to the possible option, but in the hope that from now on your blood test results will always be good enough to go ahead.
I only remember having it once while on Abraxane, during one of the hospitalisations, but there may have been a second such event, same setting. I used it regularly as part of the regime when I was on AC chemo, where it was done for several days after each treatment. While there were several episodes of low neutrophils while on Abraxane, I was able to avoid needing these injections by waiting a couple of days, repeating the bloods, and getting the treatment, and by self-isolating and not letting anyone come near me in any setting unless they were medical professionals. I was very strict about that.
my neutrophils we’re 1.1 on Thursday but Abraxane went ahead the following day. I’ve read that neutrophils should be over 1.5 though or treatment should be delayed.
I think my WBC and also red blood cells are getting quite a hammering
I wonder how Phesgo affects the bloods too. On 7 Oct I had Phesgo then 10% of Paclitaxel (stopped due to anaphylaxis)
In "my" hospital, as long as your neutrophils are at 1.0 or above, they are happy to go on with the treatment. Seems it's the same where you are at. Yes, the bloods do take a hammering, but if you are familiar with it you will notice that some of these values depend on each other to one degree or another. I always looked at mine and as long as my kidney and liver functions remained ok, I was ok with it. By that I mean that even if a value strayed out of normal range but not too badly, I was ok as long as it did not then go too far off.
I suppose to some degree it is playing it by ear, giving some trust to the team but still keeping an eye on things. Seems you are being watchful, which to me sounds really good.
That’s so interesting about your hospital going ahead with 1.0 up. It sounds like mine do too doesn’t it.
There is no option to wait at Marsden, only when they delay and then you get your appointment a week later when you would have had the next treatment. Your hospital sounds lovely and flexible.
I find it hard to trust the team because they’ve made constant mistakes since the beginning. I feel I have to double check everything, unfortunately. Wish I didn’t.
Thanks for the tip about the liver and kidney values. Those seem better than my more hammered red and WBC.
Hi GarageYoga, me again. What wonderful good news at last for you that you have switched to Abraxane and doing ok with it. My fingers are crossed for you that it keeps that way.
Well done again for keep going despite all the knock backs you had. You and all cancer patients inspire me in my journey and are fine examples to follow.
I finished my 8th weekly Paclitaxol on Friday and have 4 more to go so I feel proud as it has not been easy. I agree with you hair loss is no biggie. Cold capping but hair falling although there still but substantially lost alot of hair and my first sign of baldness yesterday. But its all cosmetic only and will not change who I am as a person hair there or not. Neuropathy you are right is the biggie and the heart function with Herceptin.
Update on my reduced dose of Taxol by 20% grams ,it is helping symptoms overall. Neuropathy lessened but not gone away. Tingling still there more or less 24 hours and dropping objects from hand still an issue. But I do see improvements to some extent. Praying it will reverse once chemo stops.
I have my first heart scan next month. I was a little worried about effects on heart with Herceptin as gentically cardiomyapathy runs in the male siblings and 3 other brothers have it and one passed away suddenly 6 years ago aged 49. I had my genetic testing 5 years ago and was given the all clear and my pre chemo heart scan was ok so fingers crossed all will be OK my first heart scan post Herceptin.
And on the blood count just to let you know that my hospital which is private also dont cancel chemo unless it drops below 1. Try having some dark choclate at least 90% there has been research (see link )this helps with blood counts and I live on dried figs and apricots from Holland & Barrett as well.
Wishing you all the good luck in world with your treatment plan and reading your post made me smile your switch seems for the good. Hoping your side effects will be limited.
I find it hard to trust the team because they’ve made constant mistakes since the beginning. I feel I have to double check everything, unfortunately. Wish I didn’t.
Yeah, I hear you loud and clear on this. Some people in my team made some significant errors too, but thankfully my consultant is brilliant, and so is my nurse.
As Susie70 has mentioned, a reduced dose is sometimes the right solution if things go too far out of normal ranges. They work on approximations anyway, so sometimes a bit of "trimming" is necessary to bring things into balance. At one point when I was in doubt I spoke to the oncology pharmacist who was able to offer some data and a few good web links to articles. This then helped me make some decisions. The website that Susie70 is pointing to is one that I too use a lot.
When is your next Abraxane treatment scheduled for?
Thank you so much for crossing your fingers for me. I was certainly massively relieved to get through the first Abraxane without a repeat of the previous week's anaphylaxis. It depended on what I'd reacted to of course. Presumably it was the oil preservative in Paclitaxel then... crossing my own fingers too.
Nice to meet someone like you who also doesn't consider hair loss such a big deal, but is far more concerned about neuropathy. I am always so surprised when people are so focussed on their hair, unless they are very young.
I'm glad to hear your neuropathy has lessened somewhat, but it still sounds like you are suffering from it. I really really hope it continues to lessen. My husband's uncle was on Paclitaxel and said by 6 months after the last dose his neuropathy had improved a lot, so it does in some people. They don't know who though do they, it's a lottery.
I feel the same as you about the heart. What a relief about your genetic test coming out negative; I hope your next scan shows positive results. My second heart echo reported a LFEV of 59% and I asked the doctors what it had been pre-chemo but they didn't know (!) They said they would find out... that was weeks ago, so not sure whether they are covering it up or truly don't know. My heart felt like it was suffering a LOT in EC chemo, and it's still beating much faster than it used to. My HR while resting before was always high 50s and low 60s, whereas now it's never slower than 80 and often much faster than that. I am also on Herceptin (combined with Perjeta in Phesgo) - 3 weekly for a year.
I have just discovered that Neutrophils under 1 seems to be my hospital cut off too. It was 1.1. before the last cycle and I was supposed to have taken Filgrastim for 4 days, but there was a muddle up with the prescription and I only took it once. They tested my neutrophils yesterday again and they were 1.4, so I was told last night that that is ok.
How interesting about dark chocolate! I love chocolate and actually drink loads of cocoa every day (cocoa powder with water and a bit of milk, unsweetened). Do you think that counts? I will also get some 90% chocolate.
Regarding side effects on Abraxane, I had a lot of weird joint pain for a few days, that sort of hurt for a while in some joints then switched to other joints. I only needed a bit of co codamol at night for two nights, it was tolerable other than that. Two mouth ulcers that have now improved.
Thanks again for your lovely and helpful post, and for your kind wishes. Please let me know how you get on, I am wishing you all good luck too xxx
Sorry to hear some people on your team have also made some significant errors. Good your consultant and nurse are brilliant. I have had to deal with them forgetting MRI, ultrasounds, appointments, mixing up prescriptions, prescribing the wrong medication, administering treatment in the wrong order, incorrect info in letters, delays in treatment due to their errors, etc etc etc etc etc In my team, it's the chemo nurses who are brilliant.
I love good links to articles. Many thanks to you and Susie70 for the chocolate one!!! xxx
My first Abraxane (called Cycle 2) was Fri 14 October, then my next one will be on Fri 4 November
My Phesgo was on Fri 7 October with the next one on Fri 28 October
They would have been on the same day, but because the anaphylaxis was on Cycle 2 Day 1 of Pacli & Phesgo, they are now a week out.
I was supposed to have 4 cycles of Pacli (weekly, with each cycle having 3 days: Day 1, 8, 15). In Cycle 1 I had Days 1 and 15, but 8 was missed due to neutrophils only being 0.6).
They counted the Day 1 and Day 15 as Cycle 1, so there should be 3 Cycles of Abraxane.
