Kiwi ladies who need encouragment, but all welcome.
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I'm off to Auckland hospital tomorrow for my chemo assesment. May the parking gods be with me.
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Good luck tomorrow Shazza.
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Had my appointment with the oncologist and went for a ECG at the hospital and will be starting Xeloda an oral chemotherapy on Wednesday. They have given me a frightening amount of diarrhoea medication which I'm hoping not to have to use as well as a million emergency numbers.
Onwards and upwards0 -
Sending a big hug Shazza and hope you don't have too many side effects.
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Onwards and upwards! I remember getting a million emergency numbers. I did have to call them once, at 1am with a fever.
Good luck Wednesday. Fingers crossed the SEs are mild for you ... but major for those nasty BC cells!!0 -
Paclitaxol #9 now down yesterday - 3 more to go!
Am off to see the All Blacks vs Wallabies at Stadium tonight and hopefully the presentation of the Bledisloe Cup
Next Tuesday I have my radiotherapy consult / measuring up appointment. Can anyone tell me what to expect at that? I've heard about the tattoos but not much else. Do they do any type of scan to see whether there is any sign of remaining tumour cells in the breast?
Love and light xx0 -
Yay for 9 down Kruise! 3 more is nothing. You are nearly there.
I had the same chemo as you and then went on to have 5 weeks rads. I recall I had a pre rads appointment where they did a scan to plan where to zap. Because I had an MX, the scar was important. Apparently recurrences often happen in the scar tissue as there are microscopic breast tissue remains.
I also had underarm nodes and clavicle nodes zapped. They made a metal plate which they put into the machine for one part of the rads. Then came back in the room and put a gel/plastic thing across the skin for the next part. The zapping is relatively quick. It's the positioning and wiggling you around to make sure you are lined up that takes the time.
I have 3 little tattoo spots. One in between breasts and some under my armpit. I found the rads not too bad. I did burn towards the end but compared to chemo ... much easier!0 -
Hi girls.
I hope you've had a good weekend. Mine has been good. Went to the movies on Saturday with hubby (& had dinner out)
I hope the SEs aren't too bad Shazza.
Yay nearly done Kruise. I only had 2 tiny tattoos- a bit of redness & tenderness towards the end. The worst thing was going there 25 times. (& weirdly, stopping because then it felt like I was out on my own)
I hope you & your hubby are recovering & starting to feel better after all your stresses midnight.
Everyone else, I hope you are well
kt0 -
Hi Ladies,
I'm Ange, I'm freshly turned 37 and was diagnosed with BC in April, have 2 gorgeous kids aged 4 and 6 (birthdays all weekend long).
So nice to find a kiwi support network, I've been ungraciously going through chemo - I say ungracious as it's been bugger bum and have been quite sick with it all, have had my 3 cycles of FEC and have had 1 taxotere which put me into onco ward for 3 nights last week. Anyone on here had the taxotere and if you did, did it get better or worse after each "infusion" - what a stupid word!!!
I'm in Pukekohe, land of spuds and onions.
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Hi Ange
nice to meet you. You were diagnosed at the same age as me
My kids were 6 & 8 then (they're 15 & 18 now!).I didn't have taxotere (so can't help you with that question), but had AC. How many more T to go?
I hope they don't get worse!
I'm north of Auckland. There are others here who are in Auckland. Do you have to have radiation or hormone therapy as well?
Anyway, I hope the next infusion goes ok & that the SEs are minimal.
Take care,
kt
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Hi Kt,
I have 2 Taxo's to go and then I'm done, they said I wouldn't need Radiation and that it would do more harm than good so I'm glad I'm not going to have to do that too. I'm a triple negative so no hormone treatment
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B****r its raining again!
I was going to do some gardening etc outside (day off) but not now I guess.
The ground is already pretty sodden up here. We really don't need it
When's the next taxo Ange?- can they give you something to lessen the SE you had trouble with? I hope so.
How's the xeloda going Shazza?
Is your RT appt today Kruise? I hope it goes well.
Well girls. What am I going to do with myself today? I really don't feel like doing housework- its sooo boring!!
And it always need doing again real soon!
Oh well....
Take care all of you, & those of you in active treatment (((hugs)))
kt
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Hi ladies. Agree with you KT - housework is totally boring. I'm at work and going to drag myself to the gym at lunch. I started weight watchers for the millionth time yesterday. I must shift these 8kgs!!
Shazza - how are you? I've been thinking of you. I hope the SEs are not too hideous.
Ange - welcome. Only 2 to go! Yay!! Being done is an amazing feeling! My SEs got worse with each infusion. I was 40 when diagnosed, with a 9 year old and 6 year old. They will be turning 12 & 9 early next year.
Kruise - how are you doing? Is today your rads consult?
Better do some work ...0 -
Next wednesday is the next "infusion", hoping they'll lower the dosage a wee bit but they've given me heaps of drugs to help with the cramping and stuff
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Hello girls, I drop in occasionally to see what you are all up to :-)
Ange - I had taxotere - and it was horrible for me. The first round, I thought I was going to die. They reduced my dose by 10% for the second round, but the se's were still pretty horrible, so my onc decided I wouldn't do the third round. Now - my dx is very different from yours. I'm triple positive - you are triple negative, so for me the Herceptin was the important thing. You won't have that, so the taxotere might be a lot more important for you.
Discuss with your onc to see if the dose can be reduced to help you. I found FEC was manageable, but it was like being hit by a truck with the taxotere. I feel for you, but you are getting the big guns that you'll need to fight it.
Will be thinking of you, and hoping you have gentler se's from the next dose.
Trish
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Hi again everyone-
My appt yesterday with Radiology went good and it went pretty fast too - worst parts were having to keep my arms above my head for ages while they did CT scan and then the small dot tattoo in the centre of chest scratched a bit but other two on either side of breasts were painless. Radiation Oncologist has suggested I'll need 30 treatments - so 6 weeks worth. Not sure of start date yet but will be October some time. I have just 3 more paclitaxol to get through the next 3 Fridays! Also my partner and I have booked a week's holiday to Hawaii to celebrate end of chemo and that is from 21-29 September but he said that works out well as they would look to start after that date anyway. He just told me not to get too sunburnt or do any topless sunbathing!! As if!! Lol. Feeling a bit fat and yuk to go away but just have to put that aside. Have been through a lot this year and feeling blessed to have opportunity to have the break/holiday.
Ange I am basically a triple negative also - there is just a small progesterone receptor percentage there - so I am still not sure whether they will put me on any follow up pills - I'll find that out next week when I see oncologist again. I have had different chemo to you though having the AC and then paclitaxol. I am currently being tested for BRCA genes as my mother diagnosed with bc at 45 and I was 44 - no other known family members but strong link there and because of the type of cancer it was.
Well hope you ladies are getting that housework done! My daughter is vacuuming for me at the moment as she has a day off her course today. We are going to do something together though - maybe a nice lunch somewhere.
Take care x0 -
Hi Trish, nice to see you pop in here
Kruise, Hawaii sounds wonderful- so nice to have something to look forward to. You sure deserve it -
30 RT sessions, it'll be nice to get them out of the way!
Yep- I got some housework done yesterday. Luckily today has been nicer so I got some gardening in. I rewarded myself for all that weeding by putting in some vege seedlings
Back to work for Thurs & Fri, then its the weekend- yay!
Cheers
kt
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Hi guys. Just a quick update. I had a terrible and extremly rare reaction to the Xeloda chemo and have spent the past week in hospital. Somehow the Xeloda caused little plugs in my brain. I couldn't move my arms and legs or talk for several days and they couldn't work out what was going on. Apparently there are only a handful of reports of this happening in the whole world and they had never seen it in Auckland. Fortunately the side effects wear off as the drugs work their way out of your system and I'm almost back to normal, but it was absolutely terrifying at the time.
Looks like its on to plan B for me a port and weekly taxol for as long as I can tolerate it0 -
That sounds terrible Shazza, glad your on the mend!
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Hi all just checking on everyone. Visiting with one of my special BCO friends in Boston. Have met her before and its great to see her again.
Just dealing with apile of washing.
Big big hugs for everyone.
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Gawd that does sound terrible Shazza ... and really scary. I'm pleased they worked things out and you are on the mend.
I did weekly Taxol for 12 weeks. I'm not sure how long you're scheduled for? I tolerated it really well. The AC kicked my butt, but the Taxol was easy in comparison. I didn't need nausea meds. I went in on a Tuesday afternoon for my chemo and was at work Wednesday morning. I'm hoping it's the same for you.
Sounds like a great trip Alyson. Enjoy!
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Shazza,
That is terrifying. We are all so nervous when we start a new treatment anyway and then to have something so unusual and rare happen is just not fair. Great learning experinece for your docs but I'm sure you would have been more than happy not be so special and unique in this case.
Damnn the xeloda not being any use but Taxol is suppose to be good too. I say that cos I'm doing the same as you. Had my port put in two weeks ago and got my first infusion that afternoon. I was told it woud be no problem and should be able to work without noticing the effects. But that first dose made me really sick for three days. All the nurses were so surprised, a bit like your ones with the xeloda I imagine, although not anywhere near as extreme. They reduced my dose by 20% this week and it has been quite good. No vomiting and diahorea and more like indegestion than nausua. The reduction is still fine for good effect but they start at the greatest dose based on height and weight and it gives them some wiggle room.
I'm just waiting for my hair to go and it's the first time I have lost my hair so that is a bit nerve racking. Even after nearly 6 years there is just all these lovely surprises that keep popping up.
Really hope it is much kinder to you than xeloda.
Moira
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Apparently I had leukoencephalopathy as an acute complication of capecitabine chemotherapy. Me an about 5 other people ever!! Im so pleased to be back home. I'll stick with stock standard normal from now on.
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Hi Ladies,
I was given the choice today to lower my dosage due to side effects - I agreed but felt a bit apprehencsive about it, but they assured me that it wouldn't make a difference in the long run. Did anyone here lower their dosage? and how did you feel about it?
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Ang - I did have my second dose reduced by 10%. Se's were not as bad, but still too much for me, I ended up not doing the final infusion.
Hope your next treatment is gentle on you.
Trish
xoxo
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Wow. Shazza, I'm glad you're ok now. Hope the taxol goes better!
Ange, I hope your infusion goes better tomorrow. Hope those drugs to counter the SEs work
And Moiralf, I hope your next infusion is better too!
You ladies all deserve a break!
Your trip sounds great Alyson. Have fun!
Kiwi & Kruise, hope you're both good.
I am. I got a new LE sleeve yesterday & ordered a gauntlet to go with it. I'm tired tonight. It's been a long day & I'm working for the next 2 days. Early night I think...
kt0 -
Hi there, I am new to this forum. This site is great, lots of information. I was diagnosed in May, had a mastectomy with a immediate TRAM flap reconstruction on 1 July. I started chemo (FEC) 14 August and tomorrow is my second one. So far the side effects have not been too bad, nausea & foggy brain in the evening, after that ok. Hair is nearly gone - strange how the hair follicles feel weird at the moment. Anybody else tried fasting before chemo?
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Hi woodyhollow. I'm sorry you've found yourself here! How's your TRAM recovery been? I had mine in February and have recovered well. Mine was delayed by 2 years. I didn't immediately recon, but I'm happy I finally did it. I hope tomorrow goes ok.
I didn't try fasting but there are quite a few threads on it. I did read about it with interest but never tried it.
Moira, my hair went quite quickly. It was gone 3 weeks after my first chemo, when I went back for the 2nd it was gone.
Angstapp - my dosage got lowered and I was assured it would make no difference. It made me apprehensive too. Mine got lowered because my white cell count wasn't bouncing back.
KT, I hope your new LE sleeve does the trick. What's the gauntlet?
I'm clomping around the house trying to wear in some new heels. I currently look a right sight, wearing high heels with socks! I have a function to go to tomorrow night and my new shoes pinch my toes. Hopefully this socks with shoes trick works. Oh the things we do ....0 -
Welcome Woodyhollow. No I never tried fasting before chemo either.
Kt1966 - hope you got an early night and work has gone ok.
Kiwi hope you got those new heels sorted for the function. I just bought some new shoes today so will have to break those in too.
ShazzaKelly, how awful! Thank goodness all is coming right after stopping the Xeloda.
I am on weekly Taxol now - having 12 treatments and nearly there with 2 more to go. I am starting to feel it now - they haven't decreased dose at all - in fact they are talking about increasing it because I have put on so much weight with it! 10kg! In one week I had gained 2kg!! Nurses tell me it is the chemo but I know I have eaten more too as it mucks around with your digestion and appetite. I feel sick/nauseous if I don't eat regularly. I keep getting small bleeding noses now too. But overall it has been ok - day 3/4 I am quite tired and lethargic.
I hope you guys that are starting it or on it don't find it too harsh.
I was hopeful my hair would grow back quite a bit on taxol as I met a lady whose hair was about 2.5cm at the end of week 12. Mine has grown but not very much. Might have nearly 1cm now so it definitely was still stunted. Hopefully the growth rate will pick up soon and during rads. At least I have a little hair now)
Just a complete change of subject - anyone else have bizarre dreams at night during this whole thing?? I don't know if its because I wake up lots now or what - but a dream interpreter expert would have a field day with my lot! Lol.
It has got really cold here....southerly is hitting. Unfortunately I need to go out tonight too for my St John weekly training night. Bum! Lol Would much rather be in front of the fire.
Take care ladies x0 -
Hi Woodyhollow. I haven't heard of fasting b4 chemo- I didn't 10 yrs ago. Is it supposed to help with nausea or something? I used to go out for lunch with my mum & sister after each chemo in the small window where I felt good
I hope your treatments go well.
Kiwi, I haven't had a gauntlet b4 but was reading on the LE forums that you should wear one when you wear a sleeve to prevent your hand swelling. Mine will be preventative (sleeve too) for work as its quite physical & I don't want a flare up. I hope your shoes don't pinch tonight!
At the mo I'm lying on my bed typing- recovering from work (& feeding the beasties & doing the washing...)
Keep warm Kruise! Nearly there with the taxol too
Have a good night all
kt0
