I'm so, so sorry that you have so much to cope with on top of your treatment. I wish I could send you a proper hug rather than just an electronic one.
Thanks Charisse - I did wonder if they offered brown ones as I wouldn't mind that, far more discrete than black for my skin tone.
Sue H-S - Belle updated her blog yesterday (https://gettingabreastofthesituation.wordpress.com/) - she sounds like she's having a hard time of it with her latest cycle, so I guess she hasn't wandered this way as often as usual. x
Just popping in to say hi as I'm finally starting to climb out of the pit of second T. The se's haven't been quite as bad this time - I think that last time it was worse because I did 2 days at the hospital to have the herceptin (day 1) then the T on day 2, so I was knackered to start with. I've also been ultra careful with my mouth and have (touch wood) not had any ulcers this time. The fatigue and blues are as bad as before though. Hopefully the fog will lift soon!
Popkit - my neighbours are doing building work too!! They've discovered that our gas mains routes through their garden so it now needs to be moved. The gas men came round to us on Thursday (day after treatment) to see if they could sort it that day - which involves digging up our garden. I gave them short shrift! When they got in touch to arrange when to do it I explained that I was having medical treatment and could it not wait until the new year. They said that our neighbours are having a new drive laid and want it done in 2 weeks time. I very nearly went on a big "you try chemo and see how important a new f*ing drive is after that" tirade but managed to restrain myself. Just could do without the extra stress!
Ref the different treatments, I think it's good to remember that everyone here is having something slightly different because the NHS (like other country's health services) is so good at tailoring its response to BC. In the 'old days' we'd have all been on exactly the same regime because every cancer was treated the same. These days they understand it so much better they can tailor everything to your type of cancer, to your personal situation. So definitely ask questions of your onc if you want to understand more about the choices they are making for you, but don't worry that someone who 'seems' to have the same BC is having different treatment, because there's probably something subtly different that we don't see. Also, in my case, I was giving the choice between surgery first or chemo first because there wasn't any difference in terms of prognosis, and I'm sure there are other similar situations where treatment decisions have to be made even though it doesn't make any difference in the long term, so different oncs might make different decisions.
Moving beyond chemo, I know a few of us are looking at radiotherapy coming up and thought I'd share something I read. When they do radiotherapy they tattoo some really tiny black dots on you so they can get it in the right place each time. Apparently, some hospitals have the option of tattoos that only show up in UV light, but you might have to ask for it to get them. As someone with very pale skin I found this helpful as I don't like the idea of black dots on me, however small. So I thought I'd mention it in case anyone else wanted to ask their hospital about it when the time comes.
Right, must stop procrastinating and walk the dog - my first proper outside trip for 3 days!
has anyone heard anything of Belle lately? I know she started the thread for the June starters and posted in the beginning.
Just popped across from the May thread and knowing how debilitating and difficult 6 x FEC can be (just finished my lot on Sept 1) I am a little concerned about not seeing much of her on this thread.
Just to emphasize what Sue H S said: your treatment is based on your specific conditions, the latest guidelines and results and your consultant's experience. Just because the study I read had that specific result doesn't mean your treatment is not the best for your case. Your consultant will be aware of a far broader range of studies and considerations, and is making a far better decision for your treatment than some people on the internet who have a very partial view! Sorry if my post was depressing for you, that was not the intention. I am not an expert: I was given some detailed information relevant to my case (hormone positive, HER2 negative), and have no expertise whatsoever in triple negative cancer.
Hope Tuesday goes well,
just a quick update: surprisingly my blood counts (like the neutrophils) rose from 0.9 to 6.6 by the time I had chemo yesterday, so that was a surprise. They said it was likely due to the steroids..
So all went ahead, even though there were loooong delays. It took 6hrs before anything even started, and spent over 9hrs in total on the chemo ward yesterday.
oh, they did reduce my dose by 20%, as they graded my side effects (esp the mouth) and blood counts as grade 3?
Horrid, all this chemo stuff, but pleased to be still on schedule, and hopefully all fine to have my last final one on the last day of September!
How is everyone after their latest dose?
I can understand your confusion - and often, unless we ask, more in depth, explanations are not given.
We may need to keep in mind, that our various treatments are based on constantly updated NICE guidelines for the relevant diagnosis we have, to achieve the best possible outcome for us.
It is good you went with your oncologists decision. When you see him/her again - perhaps ask for more detail to put your mind at rest?
The T usually stands for docetaxel (taxotere) - and here is a link for a little more information
I hope this helps a little.
I am glad to hear you were offered a choice in T treatments and more importantly that you were given good literature in order to make an informed choice. The more I read obout BC the more I appreciate that everyones experience is and has to be different and their treatment paths/choices are therefore different even though their cancers may have a lot in common. Previous health issues, age, weight, height, ( plus where in the world you live) etc, etc all play a part in deciding which treatment is most appropriate. In the end what matters is that we get treatment and beat this thing.
One of twelve done.
Have a good weekend all.
Hi Julia S
Thank you so much for clarifying this and having done the proper research - fantastic!
I am sure it has put many ladies mind at rest and helps them feel more assured that the right treatment for them is given.
As 'T' was not relevant for my treatment, I have, as yet, not explored all about it. Mind you - I am in the process of doing so, as I widen my understanding and knowledge.
just to respond to the Taxotere weekly vs 3 weekly debate. I am SURE the reason Taxotere = Docetaxol is given 3 weekly vs weekly is not due to cost. I am an NHS patient. I was offered a choice between Paclitaxel = Taxol weekly and Taxotere 3 weekly. I asked my oncologist for more literature to make the decision and he referred me to the E1199 trial. See below for the latest reference. Taxotere 3 weekly is the most effective in the long term for hormone positive cancer: that is why those of us with hormone receptive cancer are offered it. Paclitaxel weekly is most effective for triple negative cancer. The reason I was given the choice is because my cancer is not very advanced, and the differences for hormone positive are not huge - although since they are statistically significant, I chose doxetaxel 3 weekly.
Please don't assume your oncologists don't have your overall health in mind.
Here is the latest reference.
Sparano, J. A., F. Zhao, S. Martino, J. A. Ligibel, E. A. Perez, T. Saphner, A. C. Wolff, G. W. Sledge, W. C. Wood and N. E. Davidson (2015). "Long-Term Follow-Up of the E1199 Phase III Trial Evaluating the Role of Taxane and Schedule in Operable Breast Cancer." Journal of Clinical Oncology 33(21): 2353-2360.
Sorry to hear your counts so low - I have to admit that I don't get automatically told about mine and I don't want to know about them unless there's a problem or a decision to be made, so I never ask.
Does this mean that you're treatment's going to be delayed by a week? I hope not (that would be so annoying) but at least if it does you'll have another week's recovery before it starts again and if the blood transfusion helps you then it might make the se's a bit easier next time?
Take care x
Just got the phone call from the ward about my session tomorrow. The nurse said they werent happy with my blood results. They were all too low, esp the neutrophils (0.9?), and there was even talk about blood transfusions! Definitely didnt see that one coming! And definitely not happy with that idea..
How has everyone's counts been?
it is great to hear that you are might likely have an easier journey through your T part of your chemo than the UK ladies. And yes, it is challenging to have, a perhaps more challenging chemo regime, due to cost.
But unfortunately, choices have to be made - considering that the UK National Insurance Contributions are likely lower than the compulsary health insurance in the Netherlands and also covers the UK benefits system, such as unemployment, state pensions, etc.
Our treatment is free and having worked out, how much my treatment has and is liklely costing (around £40,000) I am quite happy with the decisions, which are being taken. After all, there is only so much money in the 'kitty'. The care, help and support I have and am receiving is second to none. Therefore I also have the trust, that I am getting the best treatment possible to have the best outcome. I trust them that they would not subject me to treatment, which would compromise my ability to cope and if it does become challenging that the right support is available.
I've been reading (I'm a reader more than a poster!) all your stories about T with increasing horror - it sounds like you are having a really rough time.
I start T on Friday ( 12 × weekly) and was getting more than a bit anxious, but my oncologist assured me that weekly has less side effects than 3x weekly so when I asked why doesn't everyone get it weekly he said cost!! That really is the pits. I'm having my treatment in the Netherlands so obviously different to the NHS, but it makes you wonder....
Good luck all,
Well done on getting through today ladies having T.
Terriannes90 - I thought Herceptin was like a bee sting too. I'm going to put some emla cream on tomorrow and see if that stops it, I'm such a wimp!
All - I asked my chemo nurse about the probiotic mouth things and she said that all probiotics are a no-no for them. I got the impression that it's a 'just in case' thing, rather than anything that they have any evidence about.
Does anyone elses miso have green leaves in it? I changed brand this time and found lots of spinach-like leaves at the bottom!!
I agree this booklet is great for showing all the options, even if everyone is different & some will not be suitable due to different body size, or in my case previous abdo surgery, which probably rules out DIEP. At least we can have all the info.
Had T no. 2 yesterday & pleased to say my veins were OK, must have been all that stress ball practice! However my oncologist would like to see a visible change in size of tumour on next ultrasound & mentioned possibility of T no.4, which I was not expecting!! so really hope there is a change to see.
Thinkng of everyone going for T today & sending hugs xx
I'm sure they'll go over this today, but the breast cancer care brochure was quite helpful (also for me the scariest and gruesome-ist brochure of the lot). A web link is here.
I was very happy with the implant option w strattice mesh because it meant no further surgeries (if all goes well), no pumping up of saline implant, no extra surgeries/scars to heal from .... but lots of people have different priorities, so best to understand pros & cons of each and be comfortable with your decision.