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June 2015

NMT_1
Member

Re: June 2015

Thank you vic, all done and part from nausea and tiredness I'm feeling pretty good...so far! When is your last one? X
vic55
Member

Re: June 2015

Good luck today NMT, hope all goes well! X
NMT_1
Member

Re: June 2015

I'm so emotional about it being my last one, apparently my numerous side effects are a good sign!? I'm relieved it will soon all be over and am hoping that my MRI shows it has all worked well! X
Sar41
Member

Re: June 2015

NMT sounds like you're really sensitive to it all. Fingers crossed that it all resolves though and it must be a relief to know that it's the last cycle on Thursday.
Nearly there! x
NMT_1
Member

Re: June 2015

My fingers and toes have been a nightmare and are still feeling odd so my Dr has put me back on my first drugs (EC) he started talking about delaying my last cycle but changed his mind, apparently I'm just really sensitive to the taxol and they are concerned about long term damage to my fingers and toes! I'm just grateful i still get to finish chemo in Thursday, then I can start planning for my surgery. Hope you are all progressing well. X
vic55
Member

Re: June 2015

Good plan sar. Id be up for that. Saw oncologist (aka Dr poison) yesterday, final appt with him pre 6 monthly check ups. Feel for you on extension, am getting bit giddy about final one next week. Hope next treatment goes ok. Am doing the look good feel better course this afternoon. Hoping they can sort the bags under my eyes!
Sar41
Member

Re: June 2015

Thanks. Can feel my fingers and toes again, took 3 days to get back to normal though. Plan is to go again next week at full dose and the reduce it in future if it happens again. Fingers crossed it doesn't. 

At this rate it will be Christmas before radiotherapy is finished.

Think I'll be the last of us June girls to finish chemo at this rate. 

Maybe a new year, new start meet up could be a plan? x

vic55
Member

Re: June 2015

Oh sar you have my sympathy!!! Mittens now would be so not right!!
Sar41
Member

Re: June 2015

Well fingers are def feeling better today but toes are still feeling strange. 

Seriously though trying to sleep in mittens to keep my hands warm while having hot flushes was not fun although my husband found it hilarious.

Have good weekend ladies.

I can feel the sofa and Strictly calling me x

vic55
Member

Re: June 2015

Sar...thats frustrating! Have made it back to work for a bit Thurs / Fri after round 5 last week. Home this afternoon and just zonked out for 2 hours. Tiredness def building 😞
Sar41
Member

Re: June 2015

Spoke too soon, peripheral neuropathy is building up, can't feel my fingers properly as I type this, so no chemo for me next week and dose reduction the week after.

On the plus side I get to spend my daughters third birthday with her rather than in the chemo unit, every cloud . . .

Sar41
Member

Re: June 2015

Hi ladies

How you all getting on? Not been on for a while, was waiting to see how my chemo went as I seem to be the only one of us on weekly T.

Had my 4th T yesterday and am def getting off more lightly than the rest of you, the side effects seem to be a lot less than you describe and I'm even getting some hair growth, not just on my head though!

NMT hope things are looking up for you, and Jacqui what treatment plan did you decide on?

Vic, I feel your pain, have posted on your thread x

vic55
Member

Re: June 2015

Ladies

Know in grand scheme of things, its not the worst side effect, but any hints / tips on hot flushes? Am on zoladex during chemo so know that is making it worse, but they are particularly bad at night. Just feel kinda rank. Got cooling pillows that help, but any advice would be good!
Deborah44
Member

Re: June 2015

 
NMT_1
Member

Re: June 2015

We've no idea how long he will be in which makes it harder, I will have a look for the dad thank you x
vic55
Member

Re: June 2015

Oh nmt that's tough....is he in for awhile? Look good feel better do a dvd also x
NMT_1
Member

Re: June 2015

I can't get to a look good feel good course, I would have loved to go to one have a great time vic. Is there any you tube videos/online advice that anybody has found useful? My husband is back in hospital so I've sort of given up on looking good I'm just trying to cope xx hope everybody else is ok xx
vic55
Member

Re: June 2015

Water and rubbish films all planned! Yup sat 19th, just before final round, so assuming all goes okay, should be at my best. Got the look good feel good course on Tues 14th, so hoping for nice make up and tips on colouring in my wonky eyebrows. Glad you are picking up NMT X
NMT_1
Member

Re: June 2015

Well done vic, I'm sure lots of water and rest are your plans for the next few days! Hope your side effects are minimal when is the wedding? I'm on day 7 and am just starting to feel better-still some aches and tired but much more manageable x
vic55
Member

Re: June 2015

Well dose 5 done this morning. 1 more left, end cant come quick enough! On schedule to make my brothers wedding at end of this cycle! Hope you all are doing ok x
Angel10
Member

Re: June 2015

I too had a mastectomy in May before my chemotherapy started and it was not as bad as I thought it would be. I had to have my reconstruction done at the same time so I was in the high dependency unit for 3 days and in hospital for a week in total but the recovery has been really good overall. The worse part for me was having the drains removed and that's only because I'm funny with sensations rather than it being painful. The overall recovery period for me was longer as I couldn't lift etc due to the reconstruction and I have a 2 year old!! Help was definitely required. However 3 months later I'm moving normally (still wearing my support bras) and looking forward to the reconstruction being completed once my weekly chemotherapy has ended.

Look at it as a positive ... that they are getting rid of all those mutant cells we don't want! Good luck.
lindy15
Member

Re: June 2015

Terry,

I had a mastectomy with 8 lypmh nodes removed and I was in disbelief how quickly I recovered.

the surgeon kept saying I would be out of hospital in 2 days and I didn't believe him.

But it was much better than I thought it would be.. just be careful not to raise your arm or do exercises too soon.

I'm not sure if you have had surgery before but I had a C-section last year and the mastectomy was a walk in the park because it's not muscle they are touching but tissue so it doesn't hurt as much afterwards.

The only annoying thing for me was the drain they had, but that's temporary.

Also, my mindset was so much better. It was done, the bad stuff was out and I felt so much more positive afterwards and was ready to take on chemo or whatever was thrown at me afterwards.

I hope this helps,

Lindy

NMT_1
Member

Re: June 2015

Hope your appointment goes ok Jacqui, let me know what you decide I'm hoping to get an appointment soon so I can start to prepare xx
Terry123
Member

Re: June 2015

Ladies,

 

I really need a bit of support and advice - seeing the surgeon on Tuesday and I have never been so scared - to the extent the doctor had to prescripe dizapan over the weekend.  If I have to have a mastectomy how would I cope and what is the likely recovery timescales.  Any help greatly appreciated. Jacqui xx

 

vic55
Member

Re: June 2015

Hey NMT, sorry this round is rubbish. Would deffo do what Josie suggested, book a nice treat soon to focus on! And yup re the blood tests I would be frustrated too. I had lumpectomy not mastectomy, but process of surgery so much easier than chemo.
Josie11
Member

Re: June 2015

Oh NMT, how frustrating about your blood sample. That's the bits that upset me  - I'm a bit of a control freak and it's so hard to not be in control. Its so not wrong to be upset, but maybe you could plan something nice for the delay if you feel up to it? Something wee like afternoon tea at a posh hotel or even a last minute couple of days away. It could give you time to have a break and be better prepared for surgery. Sending you big hugs, xx

NMT_1
Member

Re: June 2015

Thank you Jodie this is really helpful xxx
NMT_1
Member

Re: June 2015

Quick question, apparently my blood sample didn't make it from one hospital to the genetic testing hospital. This has now left me 2 weeks behind schedule possibly affecting my surgery. Am I wrong to be upset/stressed?
Josie11
Member

Re: June 2015

Hi NMT, I had a mastectomy and full axillary lymph node clearance before chemo so found things a bit harder, couldn't drive for about 3 weeks as it was on my left and had to be careful with lifting. My boys are 8 & 10 so they can do a lot for themselves and helped with lifting. But mentally, surgery is so much easier than chemo - yes, you're a bit tired but within a few days, you're back to yourself and finding ways round the problems. 

Iknow it feels impossible, but try not to worry ahead and just take each day as it comes - incredibly hard as a mum. I found if I put contingency plans in place, I could then relax and make the most of the better bits - coffee out with friends once I was up to it, we had a few days away at a Wigwam week 4 after surgery.

take care and be good to yourself on this nightmare of a journey we find ourselves on. Xxxx

Sar41
Member

Re: June 2015

NMT I had my surgery first, a total mastectomy and SNB, in for one night and home with a drain in and it was a piece of cake compared to chemo. Came home Thursday and made it out for breakfast on the Saturday. Only took painkillers for 48 hours and could even change nappies, just couldn't lift toddlers thrashing around mid tantrum. Just concentrate on getting through this bit, honestly the surgery and recovery was the easy bit x
NMT_1
Member

Re: June 2015

Day 3 having had taxol, my legs and arms are like lead, I'm completely wiped out and need to get this over and done with, no idea how I will cope with childcare after surgery this is almost impossible 😞
vic55
Member

Re: June 2015

Yes on the lollies!!!! Hubby made me Ribena ones at home. Amazing. Also, small Qs, I know people try to be positive, but getting fed up of people saying only 2 more to go. Firstly, I can count! Secondly that's still 6 long weeks of being bald, knackered and not me. I know they try to be positive but finding it hard to bite my tongue. Rant done.
newey47
Member

Re: June 2015

and forgot to say Ice lollies, ones like mivvi with ice cream in the middle, or cornettos, really helped with mouth x

 

newey47
Member

Re: June 2015

hi, what worked for me during the dreaded T was Coke or Pepsi, the full fat variety lol and I never drink it normally.  The only food I could tolerate was cheese on toast,and KFC lol x

 

vic55
Member

Re: June 2015

Hey Lisa, tax did tire me out, so I ended up just having little bits. Longer bounce back then FEC but doable. Drinking wise I had to have a variety, hated just water after a day or so, so tried squash, lemonade to vary it. Next one on wed, I cant wait for this to be done!
Lisac1
Member

Re: June 2015

Had my 4th round of chemo yesterday moved on to docetaxel dreading this next week, with bone pain etc starting to see the light at the end of the tunnel. Hoping I'm not gonna be to bad. FEC floored me for around a week every round. Anyone recommend any food or drink that worked for them while receiving docetaxel ? X
NMT_1
Member

Re: June 2015

5 down 1 to go, was wiped out with it today and now can't sleep, my doctor reduce the dose meaning I don't have to have the booster injections. I was worried about this affecting the effectiveness but he was very supportive and explained that we need to find the correct dose for me. Apparantly in all his many years of working he has never seen anyone as bad as I was, having to crawl/drag myself to the bathroom apparently isn't normal! I'm so glad I spoke to him, I know I won't be pain and weakness free-it's starting already-but it should be more manageable...I hope! Good luck to everyone hope we can all share the phrase " only one more to go very soon!" X
Jobey68
Member

Re: June 2015

Ive not had Chemo but can tell you rads is a doddle! A few minutes each day and its over, yoy dont feel a thing, only SE was a pink boob! I worked every day and 2 months on am feeling great! You will be fine ladies after dealing with Chemo Xx jo
Sar41
Member

Re: June 2015

Viv might have been bravado from the birthday bubbles but last night was feeling the same - radiotherapy - bring it on - got to be a walk in the park after this!!! Fingers crossed it registers a lot lower on the grimness scale than chemo.

Barbara that sounds really uncomfortable, can they not at least give you something to help you sleep? If you can stop then at least maybe be able to ignore him and get some kip. Everything seems so much worse when you're sleeps being disturbed as well. Thinking of you x

Babalicious
Member

Re: June 2015

Happy birthday Sar! Once we get this dreaded treatment and it's side effects out of the way every day will feel like a birthday! Vic I think anything must be easier than the treatment we are going through just now. Spoke to breast nurse yesterday and mentioned the peripheral neuropathy. She said it will get worse as the treatment goes on as that is the main side effect of the taxotere and it takes as few months to get better - not what I was hoping to hear but I suppose a small price to pay to get rid of the cancer! Anyone found anything that helps it? I'm finding it worse at night - feel like hands and feet on fire! Barbara x
vic55
Member

Re: June 2015

Def doing the countdown....oh sar as birthdays go....that isn't fun!! Hope you get spoiled later 😊 Also, anyone else looking forward to rads?? I know its full on for a few weeks, but it has to be easier than this. Just think...no needles, steroids, booster jabs etc etc
Sar41
Member

Re: June 2015

Happy birthday to me, I'm currently sat on the chemo unit waiting for my Paclitaxel, not quite the present I had in mind but just glad I'm still here and well, lots of people aren't that lucky. 

The weeklies don't seem too bad so far, a day and a half of nausea, muscle and joint pain and fatigue but think I'm getting off pretty lightly compared to some of you at the moment. 

Hope you're all ok ladies, anyone else on countdown mode now? Seeing the number of cycles left go down is really helping me psychologically at the moment, not going to let this bloody thing beat me.

Think this will be a birthday to forget though. Chemo, sleep and birthday tea is the plan, not the most exciting day ever x

happyoptomist
Member

Re: June 2015

Hi. I had my first Doxcetaxol 9 days ago and my fingers have felt sore,bit like they've been squashed! Seem to be a bit easier this morning though so am hopeful the worst is over in terms of side effects. Certainly felt worse than when I had the 3 lots of FEC... No energy,aching all over but especially in back, knees, thighs, ribs. Not sure if it's the chemotherapy or the Filgrastim injections. Last one this morning, hooray!

Wishing you all well. Hugs, Dxx

vic55
Member

Re: June 2015

NMT no....sounds painful...hope get sorted soon. Am back to work tomorrow after first T dose. Nerdily looking forward to it! After a week of being wiped out a few hours at work sound happily normal! Hope everyone is doing ok.
NMT_1
Member

Re: June 2015

Not had any double vision-where does that leave you with driving? Yeah one more to go, looking forward to saying that as well! Anybody else struggling with painful finger tips?
vic55
Member

Re: June 2015

You at cov too for rads? I've been told to expect 20 also. Easier for me as work in cov, so going to try and combine the two. Gulp on double vision.
Deborah44
Member

Re: June 2015

Yes, just 1 to go before radiotherapy starts which will be a 45 miles round trip each day for 20 sessions.  I have had double vision a couple of times for a short period during the T treatment.  One of the best thing is that I have re-discovered Tesco home shopping - it's just been and I will definantly be using it long after this treatment is finished. x

vic55
Member

Re: June 2015

Yeah on the 7 hours!! Deb, with that being your 2nd t does that mean you only have one more to go? And double vision!??
Deborah44
Member

Re: June 2015

Had my 2nd T yesterday and amzingly I had 7hrs sleep!  All good so far although I'm not expecting the side effects not to kick in until late tomorrow.  My oncologist suggeted starting my painkillers in the morning before it kicks in.  I forgot to say another side effect I am getting is occasional double vision, I felt better when another person also posted this. x

Deborah44
Member

Re: June 2015

After my 1st T I felt unwell for a little longer than on the FEC but 24hrs after my last injection I felt better over night, just in time for my family wedding. I have also found that during the 2nd & 3rd week of T my sleep has returned almost to normal for the first time since I started my treatments the end of May.  I am having my 2nd T tomorrow and since I have had to start taking the steroids again today the sleepless nights are back.  it's 2.30am and still no sleep in me.  X