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June 2016 starters?

bagpus
Member

Re: June 2016 starters?

Hi Belle,

 

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.

 

x

Belle
Member

Re: June 2016 starters?

Hi Sue H-S and Bagpus,

Thanks for your concern and thanks for getting in touch. Things have indeed been grim. I'm finding my 5th FEC extremely difficult. The chemical blues have been hideous, exhaustion appalling and I've had an unwelcome return of side effects (nausea & diarrhoea) I've not seen since my first cycle on top of all the others.

As well as all of that crap, I've been hit by a run of other events that have taken their toll. Since the 1st Sept: my aunt has been diagnosed with pancreatic cancer; a friend I've known for 20 years has been diagnosed with inoperable widespread cancer and given days/weeks to live; another friend had treatment withdrawn last Monday and died on Friday; my husband's cousin died - not close to me but involves logistically nightmare for funeral and sad for my husband; my daughter traced her birth parents via Facebook and unleashed a bit of a tsunami of emotion both for her and inadvertently dragged her siblings into something they didn't want and weren't ready for - joys of adoption; and finally, my mum fell apart at the idea of genetic screening and it took 3 days of painstaking conversation and support to persuade her to provide the information I need. All this has no doubt added to my physical and psychological symptoms for this cycle.

So I haven't been around much. I'm sorry so many of you are continuing to have a hard time.

Still, not much longer, eh?

B x
bagpus
Member

Re: June 2016 starters?

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.

Charissecarson
Member

Re: June 2016 starters?

Just as an extra to what Bagpus said, if you can't get uv tattoo dots, some places also do brown coloured ones so they look more like moles or freckles so a bit more natural.

C x
bagpus
Member

Re: June 2016 starters?

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

bagpus
Member

Re: June 2016 starters?

Hi all,

 

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!

 

xxx

Sue H-S
Community Champion

Re: June 2016 starters?

Hi ladies,

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.

Sue xxx

Julia S
Member

Re: June 2016 starters?

Hi netti37,

 

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,

Julia

Marije
Member

Re: June 2016 starters?

Need to get those after eitghts!
Terriannes90
Member

Re: June 2016 starters?

Popkit my thoughts exactly!! My daughter is cooking lamb... my fav but like you nothing is nice 😡 so I've managed a tin of vegetable soup. Which looked like soup, smelled like soup but certainly didn't taste like soup!!!!! Now got really bad stomach cramps so no after 8 mints for me 😞

Let's hope we feel better really soon xx
popkit50
Member

Re: June 2016 starters?

Oh no Terri sorry to hear you've got the side effects back too. I had quite a bad night and ended up taking oromorph again. Today has been a bit better apart from my mouth. I can't even taste marmite! What's weird is I can smell food and it's tormenting me because it just tastes like cardboard when I eat it even if it smells amazing. Right now my husband is roasting a chicken - I feel like the ahhhh Bisto kids but I know I won't be able to taste it.

The only thing I can taste is After Eights and I know I have someone's earlier post to thank for that! A little treat after eating cardboard!!

Best wishes to all of you going through treatment this week - hopefully side effects will be minimal.

Xx
Terriannes90
Member

Re: June 2016 starters?

Morning

Looks like I spoke too soon!! Not feeling too good today have woken up with same se's as last time 😟 Not as bad but bad enough. Another day lying on sofa feeling sorry for myself.... Oh dear!!

Popkit you also said your se's were still bad.... Tax is obviously still working for us! And same as you my mouth is sooo bad again 🤔 Hope the builders are off today, that's just not fair 😖 People just don't understand!

Marije I have to start medication on day 5 & nurse said count chemo day as day 1 so that's what I do.

Hope everyone has a bearable day
Terri xx
netti37
Member

Re: June 2016 starters?

Hi anon, there are not many tn's in here I don't think. We won't have medication after as our cancer is not hormone fed. After chemo ... That's it. Plus surgery and rads. That's the scary part of tn, as we have no extra 'security' after our initial treatment. I've was told I would have chemo to shrink tumor, and then hopefully a lumpectomy...but as I want to eliminate any chances if reoccurrence, I'm seriously considering have double mastectomy. I'm yet to discuss this with my surgeon. .... I'm concentrating now on getting through my next two treatments. I'm dreading Tues. My onc has reduced my dose by 10%, due to last one and side effects. Fingers crossed. Xx hope your ok. Xx
Anon16
Member

Re: June 2016 starters?

You all seem quite well informed on your treatment end, I have no idea. They said 7 chemo maybe more and I don't know after that as it was surgery and radiotherapy but that was before they decided chemo first so I don't even know if that's happening now and I've certainly not been told I'll have to take any drugs after, are any of you triple negative?
Marije
Member

Re: June 2016 starters?

Aw what a shame popkit. Maybe lay in bed with headphones to watch a film?
And how exciting for you son to go to Japan, but yes that must be hard (for him to leave you as well I'm sure).

Just a random question: when nurse tells you to take some medicine 5 days after, do you count chemo day as day 1, or the day after?

After chemo I have no more radiotherapy or operations (besides doing some more booby beautifying). 'Just' herceptin and tamoxifen-bleh, not looking forward to that either..

Xxx
popkit50
Member

Re: June 2016 starters?

Hi Marje & Terri

Side effects are back - despite dose being lowered by 25%. Joint/bone pain not quite as bad as before thank goodness but jeez my mouth is rank. Can't taste anything properly. Desperate to be able to enjoy food again.

Had a really horrid day today; we've got new neighbours who are doing loads of building work. The builders started at 7.45 am this morning & they're still there. My husband went to ask what time they'd be finishing and they were really rude to him. It's bad enough feeling like a prisoner in your own home with the side effects but I can't even rest properly now.
My last T is also end of September can't wait but then I've got more surgery (axillary lymph node clearance) before radiotherapy. My youngest son is off to Japan for a year the day after last T so it'll be very hard to say goodbye to him. Will miss him so much.
Hopefully tomorrow will be a better day!

Popkit xx
Terriannes90
Member

Re: June 2016 starters?

Hi Marije

Glad all was ok in the end..... But what a long wait!! Think I'd have been climbing the walls 😰

Had my tax on Tuesday & herceptin and also had reduced dose & so far the se's have been much much better.... Still feeling rough but nowhere near as bad as last time!

Like you I am due last chemo end of September (26th) thank god!! Yay 1 more 😊

Still gotta have radiotherapy for 3 weeks, how about you? Then obviously herceptin for a year but I can actually see the end of this sh**! Can't wait to get my life back 😀 and my taste! Eat something that actually tastes nice.... Oh I can't wait 🍧 xx

Popkit & Bagpus how are you doing ? 😍
Marije
Member

Re: June 2016 starters?

HI all,

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?

 

xxx

 

Sue H-S
Community Champion

Re: June 2016 starters?

Hi netti37,

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

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

I hope this helps a little.

Hugs

Sue xx

 

netti37
Member

Re: June 2016 starters?

That info has not helped me....i'm triple negative and having T every 3 weeks. I was never given a option or had anything explained in depth... Just went with onc decision. The cancer has definitely shrunk, but as for long term effectiveness I'm now very worried. Got my 5 th treatment Tues and after the last one, I'm really not looking forward to it all. X
judith63
Member

Re: June 2016 starters?

Hi Julia,

 

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.

 

Judith63

Sue H-S
Community Champion

Re: June 2016 starters?

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.

Hugs

Sue xx

 

RosieFlower
Member

Re: June 2016 starters?

Thanks Julia for the info - makes me feel better knowing the odds as i'm on Tax 3 weekly, and knowing its effectiveness gets me through the horrendous side effects!
thanks
Rosie
xxxx
Julia S
Member

Re: June 2016 starters?

Dear All,

 

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.

 

Cheers,

Julia

Charissecarson
Member

Re: June 2016 starters?

Hi marije

I have suffered with low bloods from the beginning. My first one came back at 0.6 and blood transfusions have never been mentioned to me. It does however mean you can't have chemo as normal bloods are supposed to be above 2 and they don't like to give chemo unless it's above about 1.5. When I came up at 0.6 however I was told to go to chemo as normal and have another blood test before going in. My new result was 1.4 and as long as I was feeling well they let me have it so there's hope for you yet. After that low score they gave me the GCSF injections and my following bloods were 1.8 then 1.4. Hope that's helpful, let us know how you get on.

C x
bagpus
Member

Re: June 2016 starters?

Hi Marije,

 

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

blueash
Community Champion

Re: June 2016 starters?

Nobody has ever mentioned my blood counts and I have never asked. I suppose that means that all is well.

Marije
Member

Re: June 2016 starters?

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?

x

Sue H-S
Community Champion

Re: June 2016 starters?

Hi judith63,

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.

Sue xx 

judith63
Member

Re: June 2016 starters?

Hello ladies, 

 

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,  

Judith63

 

 

bagpus
Member

Re: June 2016 starters?

Thanks popkit50! Today went fine, so perhaps seaweed is the solution to our problems?!

Terriannes90
Member

Re: June 2016 starters?

Good luck Bagpus with your treatment today & with the bee sting..., I'm a wimp too!!

Not feeling to bad so far so fingers crossed for an alright day 😊

Good luck to anyone else having treatment soon xx
popkit50
Member

Re: June 2016 starters?

It's seaweed Bagpus! I like it but you don't have to eat it. X
bagpus
Member

Re: June 2016 starters?

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!!

 

x

 

 

Terriannes90
Member

Re: June 2016 starters?

Thanks for your good wishes everyone it really means a lot to me 😍

Popkit glad you're chemo was ok too, I'm not sure what reduction I had cos one nurse say 10% and the other said 25%!! So who knows? Just as long as se's arn't too bad I'll be happy 😊 and this time we know what to expect and we know it passes.

I'm also still buzzing from steroids just sitting here with my daughter & her fiancé singing reggae songs! Very random! Still having fun while I can cos I know I'm gonna get ill!

Anyway gotta go got some singing to do 🎼
RosieFlower
Member

Re: June 2016 starters?

Well done Kate and Terri for getting through today, was thinking of you - and am keeping fingers crossed that this 2nd one if not as brutal for you both.

Good luck Bagpuss for tomorrow

hugs to all
Rosie
popkit50
Member

Re: June 2016 starters?

Hi everyone

Thanks Anon & Bagpus for good wishes.

Glad yours went ok Terri - mine was quick too - went in promptly at 10.30 & home in time for lunch. Oncologist has reduced dose by 25% so also crossing fingers side effects won't be so bad.

Feeling ok so far although still buzzing on steroids so have cleaned my stove top and done two loads of washing!

Bagpus - hoping everything goes well for you tomorrow 💐

Xxxx
Terriannes90
Member

Re: June 2016 starters?

Hello everyone

Went for 2nd tax & 2nd herceptin at 12.30 & was out by 3pm so not too bad. Had a bit of trouble with veins but managed in the end. Oh & the herceptin was a bit uncomfortable....feels a bit like a bee sting & got a bit of s bruise but I'll survive!!

Had reduced dose of tax so fingers crossed for reduced side effects 👍

Popkit hope you were ok today did think of you while I was having mine 💝

Good luck to all having their treatment soon
and lots of love + kisses 😍

Terri xx
Anon16
Member

Re: June 2016 starters?

Thinking of all of you having chemo today. Sending virtual hugs xoxo
bagpus
Member

Re: June 2016 starters?

Good luck with the T today popkit50 and Terriannes90. I have mine tomorrow so currently in steroid/water/miso phase!

 

x

popkit50
Member

Re: June 2016 starters?

Morning Teriannes90!
Didn't sleep too badly in the end - up twice to pee gallons. Then got up at 6.30.
Appointment is at 10.30 and only takes 20-30 mins to get there. Just getting everything ready now and putting on my eyebrows. Accidentally rubbed one off yesterday, luckily my daughter punted it out to me before some visitors popped round!
Will try & squeeze in another miso soup before I go.
Jittery with nerves but also buzzing with steroids so have managed to do a bit of cleaning, ironing and will make packed lunch to take. I'm more worried about the side effects to come in next few days but will keep reminding myself that there's only one more to go!!
Good luck to you as well!


Lots of love & hugs to everyone - will think of you all at whatever stage you're at while I'm sitting in the chemo chair today - keep fighting!!
Kate X
Terriannes90
Member

Re: June 2016 starters?

Ooops meant to say 4 down 1 to go!!!!!
Terriannes90
Member

Re: June 2016 starters?

Morning Kate popkit

Hope you managed to get some sleep💤 I slept well considering I had been buzzing all day, must have worn myself out thank goodness!!

Anyway did get up at 5.45am and it's so dark now in the mornings it feels like the middle of the night 🌙.

So drinking loads of water & got heat pad ready so hopefully they can find a decent vein! My appointment is at 12.30 & I don't have far to go luckily. How about you? Are you prepared for our penultimate chemo. Yay it'll be 5 down 4 to go. Good luck today & lots + lots of love xx ❤️
Tinky
Member

Re: June 2016 starters?

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

Julia S
Member

Re: June 2016 starters?

Hi Millasmummy,

 

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.

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-treatment...

 

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.

X J

popkit50
Member

Re: June 2016 starters?

Not surprisingly still not asleep - full bladder & steroids!

Trying to distract myself by listening to an audiobook - a boring one in the hope it will send me to sleep.

I keep trying to remind myself how quickly the last three weeks seem to have gone despite not having done anything. So hoping that the next three go as fast then we'll be on our last one Terriannes90!

Hope you manage to get some sleep - 💤💤💤

Kate x
Terriannes90
Member

Re: June 2016 starters?

Popkit we'll be fine. I've been tearful tonight worrying about tomorrow and not sure if I'll sleep very well as buzzing from steroids!! But the quicker it comes the quicker it'll all be over.

Lots of love & hugs 💕 Terri xx
popkit50
Member

Re: June 2016 starters?

Thank you RosieFlower & Terriannes90

About to go to bed as up early in the morning. I am taking Clatityn - trying everything! Have had my miso soup this evening and will keep drinking as much water as possible. I've had such bad anxiety today - heart is hammering away.
Started taking the steroids again this morning in preparation for tomorrow and the hot flushes have suddenly increased in strength again. Can't think, speak etc when I'm having one. Will be keeping the fan on all night!

Sleep well everyone! X
RosieFlower
Member

Re: June 2016 starters?

sorry forgot to say popkit50 that I had reduced dose at 75% as my liver didn't cope very well with clearing FEC - which after these side effects I was grateful for!!

Terriannes90 - I too have achy teeth - an odd side effect!

xx
RosieFlower
Member

Re: June 2016 starters?

Good luck popkit50 tomorrow. Having my 2nd T in 10 days and 1st T has been brutal! I took Clarityn on the day of chemo until yesterday (day 10) and aches haven't been so bad - worse days for aches were day 2,3, 4 and 5 and then subsided - have you tried Clarityn as well?
The worse for me was the mouth!! OMG, nearly got admitted, as couldn't open mouth or hardly speak by day 5 - rip roaring thrush diagnosed, plus sores on roof of mouth and swallowing razor blades!! Am going to ask for meds in advance next for oral thrush, as the pain of that really drained me.

Be thinking of you tomorrow
Rosie
xxxx