starting chemo in june 2014

[Cas164]

Hi all,

Hopefully everyone is doing well and treatments are going to plan.

Julie did your last chemo go ok. I've just had mine I will miss my comrades as we have had such a giggle during chemo. However I do have the joy of seeing the nurses every 3 weeks for my herceptin. They have been absolute stars.

Good luck to everyone.

Cas x

[Roxie65]

Hi Ria

So pleased your mx went well.....hopefully now the rest of the treatment will too, we are all with you on this.

Hope everyone else is fairing well and good luck to everyone for their next treatment!!!

I keep being told how quickly its going too and if you think of the time span it is....but think of the week immediately following chemo and that one week alone seems to drag for months!!!

xxxxxxx

[Julie286]

Hi all ❤️
Pixie your comment about people asking if you've finished your treatment made me chuckle - I'm almost 9 months now since first finding my lump, 3 months into chemo and if one more person says 'I can't believe how quickly it's gone' I swear I'll not be responsible for my actions!!!!!! Off to bed now - my teenage girls are doing the 'pretty muddy' race for life tomorrow (I wanted to but have been told 'no' :-(. I'll be there cheering them on tho!! Xxxxx

[cowgirl]

Hi Ria,

I am glad your surgery is over - I am sorry that you have had such an ordeal.  We will wait with you to hear what they say on the 24th.

Love,

Merrill

[Pixie100]

I had chemo with neuts at 1.17, they gave me a lower dose and now want to do extra blood tests. Finding taxol is affecting my mood and energy more and finding it hard to motivate myself at work on down days. Have another two and a half months of chemo to go and just want the time to go quickly and get it over and done with. At least in my last session I slept through half of it thanks to a hefty dose of piriton. My friends keep asking me if I've finished my treatment yet!!

[Cas164]

Hi Ria,

Glad your mx went well . I haven't heard of surgery mid chemo but I'm sure it must happen.

Let us know what happens on the 24 th

Cas x

[ria2056]

Morning all

Well my right mx went well monday, just so relieved that the cancer has gone. Got a follow up on 24th to see whether they want to finish off my last 3cycles of chemo. Anyone out there has surgery mid way through chemo 

[Julie286]

Neural??!!! Neuts is what I meant obviously!! Xx

[Julie286]

Hi Claire! You're so nearly there with the chemo - and love the idea of your wig party. I want to do something with the friends that have been so supportive - and I'm liking that idea!! My hb count has always been ok - it's my neuts. If it helps, they (well my onc anyway) like them to be 1.5 but if you've been well they will go ahead between 1 and 1.5. Last couple of times mine have been 0.4 on the Monday, 0.9 on the Tuesday and then they usually test them again on the Wednesday to check they're 'on the up' still. I've had chemo done while my neural have been between 1 and 1.4 - so hopefully you've been well and they'll let you go ahead. I know they'd probably only delay a week - but it would be a shame for that to happen at the last hurdle.
Good luck and I'll keep everything crossed for you. Let us know how you get on.
Cas, my friend had an mx 10 years ago (before I knew her) and waited a year to do the reconstruction. She looks amazing now. I have a 'softie' until I get the other inflations - and you would honestly never know (and my other is a DD/E!!)
Lots of love and hugs
xxxxxxx
PS. Ironing for me - but I can see the sunshine so making do with that!!! Xxxx

[runner29]

Hi Julie and Cas,
My last chemo is next weds 17th n have surgery after n then radio. I'm just in the middle of organising a fundraising wig party for between surgery and radio, hoping I haven't bitten off more than I can chew!

I'm loving the sunshine, we have it here in Northamptonshire, had a lovely day yesterday sat outside in the back garden chatting with a friend 🙂 today's not as fun, washing and cleaning the house from top to bottom!

My bloods were mostly ok, suffered from low hb cycle 2, 3 and 4. Managed to get it above 100 cycle 5... Thanks black pudding n liver lol! Now my neuts at cycle 5 were 1.9 so I believe they have to be above 1.5 to not be delayed? a little concenered n hoping that this time they will be ok as I'd be gutted if last chemo was delayed. Planning on running an obstacle race on 4th October so need to get last chemo on time or I'll be too weak still to do it! Nothing like living on the edge.

Glad everyone is bearing up n looking forward to the last one. Claire Xxx

[Cas164]

Hi Julie, I'm glad you are feeling better this time. I'm sure you will sail through to the 24th. Enjoy the sunshine we have it Berkshire too isn't it wonderful !

I'm not suitable for immediate reconstruction , it doesn't bother me in the slightest and I'm quite happy to be wonky if that's what it takes to get me out the other side!!

I hope everyone else is bearing up ok . Cas x

[Julie286]

Hi Cas. Without wanting to tempt fate .....I'm not feeling as bad this time - maybe I'm just getting used to it?!?! Just feel like I'm treading on eggshells till the 24th - when I shall be joining you in singing and dancing!!!! My bloods have been very border line every time - although thankfully not caused any delays. You'll do great with the surgery - if you can get through chemo and still think about singing and dancing, you'll be just fine!! Are you getting an immediate reconstruction?
Hope everyone else is doing ok? We've got some lovely late summer sunshine here in Ayrshire ...... Might even get out for a walk later! Love to everyone xxxx

[Cas164]

Hi Julie ,

Yes thankfully bloods been ok and haven't had to delay because of being on antibiotics. I'm actually feeling much better than I was. Touch wood!!. Although I'm feeling as if I'm living in a bubble and want to get back to normal , whatever that is! I was told I will have 6 weeks after finishing chemo before surgery and this will be followed by radiotherapy. So I still have quite a way to go.

How have your bloods been? Have you found round 5 better?

We will be dancing and singing on the 24th ! Bring it on :-))))

Cx

[Julie286]

Ps Cas, my last chemo should be 24th too. Have your bloods been ok so far? Xx

[Julie286]

Morning! Delays are hard on top of everything else. I'm the kind of person who likes to have things planned and organised and I'm desperate to book a holiday for when this is all over... But I can't bear the thought of the disappointment of having to cancel if there's a problem (had to cancel summer and October holidays -appears I was the only person who didn't know you can't travel abroad during chemo -doh!!!) . Hopefully 2 weeks tomorrow I'll be done and can then start to plan. Cas, I had my treatment the other way round (mx first) and can truly, honestly say that the surgery (for me) was the easiest bit. I had an expander reconstruction (only one inflation so far). Will you have long between finishing chemo and the op? I tried to build up my fitness before the op (although that was much easier as I wasn't going through chemo obviously). Then after the op, do the exercises (mostly just stretches) that the surgeon/physio recommend, eat well (much easier than eating well during chemo!!!), and ......be kind to yourself. Do you have a date yet for surgery? Xxxx

[angel77]

polar_1 i know how you feel this has happend to me 2 times now ...once with chemo which was delayed a week and now with radiotheraphy which was ment to start yesterday but because my CT results wasnt back they delayed it a week but didnt think to ring and tell me that i had to go all the way to the hospital to be told.... its soo annoying as we was going away at the end  of radio and booked it but now i have to cancel it .. it really does affect you when they tell you its delayed as you bild your self up for it and then have to go home without treatment ..i understand how you feel xx

[Cas164]

Hi All ,

I have to say I'm looking forward to the end of chemo, last one sept 24th, however, for me I still have a bit of a journey as I will be in for surgery next. Have most of you had surgery? I know I will be having a mx , can anyone pass on any top tips? Is there anything I can do to prepare to make the next step easier? Looking forward to hearing your experiences.

Cas x

[polar_1]

Thank you ladies I will let you know how things progress on Wednesday. My session will be in the Mobile Unit which is located in Tesco's car park. At least I won't have to pay for parking!!! Sue xx

[cowgirl]

Sue - What a dirty trick - How can they goof it up so much?  I hope you can reschedule your trip.  Hope it all goes well.

Merrill

[Julie286]

Oh what a disappointment - I definitely would have sat on the floor and cried!! The whole thing is such a struggle, emotionally, physically and time wise - without silly mistakes. Not fair. Hope you can manage to get your break reorganised. Lots of love xxxx

[Roxie65]

Aww Sue so sorry to hear that I have had loads of appointment mixed like that but luckily always been my pre chemo check so they had to overbook me each time. I know the first time the receptionist said sorry your not booked in you will have to cancel your chemo I just burst into tears. So I do know how your felt. Luckily my oncologist said no way and saw me anyway. We hardly make any plans due to this rotten treatment but when we do something always seems to ruin then.

I hope it doesn't ruin your plans and you can just adjust them. Big hugs xxxxx

[polar_1]

I have just been to the hospital for my 2nd TAX, my 5th chemo session out of 6. Could have cried when I passed over my appointment card that had the correct date on it but in their diary they had entered it for next Monday!!! So because the chemo pack has to come from Clatterbridge to Southport they have now had to book me in for Wednesday. That means that my last session will be a week late and we had made plans for a few days away so I am so disappointed at the delay caused by a silly mistake.

Hope everyone else having treatment this week has better results.

Sue x

[Roxie65]

Thanks for the advice Cas and Claire

Now feeling so much better!!!  Next week have my radiotherapy mapping and my LAST chemo and actually cant wait....what is wrong with me lol....the end is in sight!!!

Good luck everyone!!! xxxx

[Cas164]

Roxie , I have had two urine tract infections which need antibiotics. Get it sorted ASAP , antibiotics do the trick and can clear it really quickly and you will start to feel better. Cas x

[runner29]

Roxie I'm triple negative too and it's scary but I agree no point worrying about it as it's a waste of time that you could be enjoying instead.

If you feel like you're peeing glass I would call your chemo nurse in the morning, it sounds like a water infection which they may need to treat with antibiotics, I had this after my 2nd chemo and needed oral antibiotics to clear it up, if it hadn't cleared they weren't going to give me my next chemo so if it is a water infection it's important you get it sorted. Only saying as I put off calling about it and got told off by my oncologist! Xxx

[Roxie65]

Hi All

Today is the first day that I am starting to feel ok after FEC5 Thursday.....been feeling sick and like I have flu with the aches and pains......today though going a wee has been horrendous like weeing glass...just one more side effect to add to the list!!!

My last chemo is the 18th but the day before on the 17th I am having my mapping done for my radiotherapy and then they said expect to start the 20 days radiotherapy about a week later so hopefully will be feeling ok by then.  Once radiotherapy finishes that will be it for e unless they find something else wrong.  I have triple negative so no medication they can give to stop it coming back just have to be vigilant and hope.

Think it will be hard for a while getting used to not being at the hopsital being checked as the fear of it coming back will be there but I am determined not to let it ruin any more of my life by worrying!!!

Hope all is going well for everyone....well as well as this rubbish treatment can!!! xxx

[Julie286]

Hi! Not feeling too bad - queasy, tired (although steroids keeping me from dozing) and sore teeth but apart from that ok so far! I had my mastectomy in April and they said they got sufficient 'margin' around the tumour so I don't need any radiotherapy. I had the expander implant which got an infection so I ended up back in hospital for i/v antibiotics - but they managed to clear it so I didn't need to get it removed. Had one inflation before chemo, However, since then I've been paranoid about infections and my bloods have been really low before each chemo that I haven't had any inflations since then. Nurses said the delay won't make any difference so think I'll start them up again in November. If it helps, the expansion I had was painless and quick! Then next year I'll think about getting the other side 'lifted' or evened up in some way. But not even thinking about that bit just yet! So my last chemo in three weeks (fingers crossed!) will be close to the end of my 'journey'....... If you don't count 10 years on tamoxifen!!!! Xxxx

[runner29]

Hope you're feeling ok today Julie, I'm much better now, was very tired on Monday and Tuesday but yesterday I managed to do some stuff around the house. Now just trying to sort out the heap of washing that seems to have piled up since before chemo! I hope that the last one is easier knowing it's the last but I get a sneaky suspicion it may have a final sting in it's tail, at least it's only a week of feeling rubbish then onwards to the next part of the journey.

What are people's next steps after the last chemo? I will be having a mastectomy and axillary node clearance at the end of October, then radiotherapy. Having expander reconstruction so that will be ongoing in 2015. Xxxxx

[Julie286]

Thanks for that! I hadn't heard of that side effect so 'good' (???) to know that I'm not alone (sorry!). Had FEC 5 today and hoping the beat up feeling doesn't happen! Hope you're both feeling better now? And I can now join you in officially being able to say that I only have one more left! I can't imagine how that last one is going to feel - I wonder if the side effects will feel more bearable knowing that we don't have to do it again?! Love to everyone. Hope you're all doing ok xxxxx

[runner29]

I had FEC 5 last weds and by the weekend all my body felt bruised, like someone had beaten me up from head to toe, it even hurt to roll over in bed. Never felt like that before but as was previously said it must be the build up.

[Roxie65]

HI Julie

I had FEC5 last Thursday and my teeth ached last time and again this time.   Last time also bought with it sore bones and skin so much so hurts to even rest lol.  Think it must just be the build up of the chemo but am getting through it with the thought that next time this happens will be the last!!!.  Just think 3 weeks tomorrow and your last will also be done!!!

Good luck everyone!! xxxx

[Julie286]

Hi! Hope everyone is doing ok. Weird question..... Do anyone else's teeth hurt???!! Mine feel like I have toothache in every tooth! I've not really suffered with mouth ulcers or anything but just over the last couple of days my teeth almost feel like they're pulsating!! FEC 5 tomorrow - then only one more to go xxxxx

[Cas164]

Hi Jay,
I'm on FEC -T 100! Had 3 FEC and just gearing up for second T on Wednesday . I've found the docetaxol completely different to the FEC and I get the impression we all react in our own way. I keep a diary so I can look back and it gives me an idea of what / where I am at. The T made me feel extremely tired . I honestly just pace myself I do what I do when I can and then the beauty of an iPad I lie down plug in to a podcast! Quite often I will fall asleep then I get up do a bit more and see how I go.

Just listen to your body . If you need to rest do and If you have the energy, get out and do something nice . We will all get through this before we know it 🙂

Cas x

[cowgirl]

Hi Jay,

I am not sure that I can be really positive....I had some awful side effects on Taxotere related to a toxic effect on my inner ears - vertigo.  I couldn't take the 4th and final chemo.  But the oncologist said my experience was unusual.  I found that sleeping was the best way to get through the days following the chemos - I could nearly sleep around the clock for about 2 days and taking all the drugs that they gave me helped.  You will not become addicted with a few days of taking something to help you sleep and something for pain that will make you more comfortable - so just do it.  I didn't need the anti-nausea drugs that they sent me home with, but everyone reacts differently.  I am hoping that it goes well for you and I am sending good thoughts....

Love to everyone,

Merrill

[Jay2014]

Hi,
I feel so full of questions today...
Day 4 of first T (following three FEC)
Aching and wondering if people have found they recover quicker with complete rest ( bed and book type) or staying up and about/ walking etc
Thank you for sharing your experiences.

[Jay2014]

Hey
Found myself something good to focus on.
Just realised it is 1st September, that means my chemo finishes next month 🙂

[Jay2014]

Thank you...this reminds me that it will come to an end. Last chemo October

[Jay2014]

Hi everyone,
Need a bit of positive support please.
Started FEC in June 1x75,2x100
Had first docetaxel on Friday. Day 4 today.
Bit out of sorts, aching ,mouth not right. Redness of face chest is going. Positive suggestions appreciated please. Thanks

[Pixie100]

Hi everyone on Tax

Sorry to hear the Tax is so tough and hope rounds 2 and 3 are easier. At least the finish line is in sight for you now so hang in there.

I am on a different regime, weekly Taxol which is similar drug to Taxotere but can be delivered weekly in smaller doses. The upside is fewer side effects. I've had tingling in my feet, slight taste changes and feeling more tired but finding it much easier than the AC I was on before. The downside is chemo won't finish until end of November. I'm having every fourth week off and hoping that means the side effects won't build up over time too much.

There is a long list of foods I've been told to eat to counter the effects of neuropathy, mostly green vegetables and things like avocado. If you are really suffering with your feet, try contacting the Haven for advice on supplements and herbal remedies, they only have three centres in the UK but might be able to give advice remotely if you don't live near enough to visit them. Also I think Maggies centres may have similar advice available.

Hoping you are all over the worst of the side effects by now.

Px

[Pixie100]

Hi Ria

Sorry to hear your news and hope all goes ok with the surgery. Macmillan may also be able to give you advice on finances, they have some information online.

Sending you a big virtual hug.

Pxx

[cowgirl]

Hi Ria,

I am sorry to hear about the sudden change in your treatment.  I think it is hard enough to go through this without these complications.  I hope it goes better for you.  My sister had to go back to work soon after her masectomy and while it was a challenge, she managed it.... 

We are all with you,

Merrill

[Roxie65]

Oh Ria so sorry to hear your news xx At least the mastectomy will be done and hopefully then you will be free of the cancer and the other treatment will just be to keep you clear. Have you spoken to your breast care nurse as I believe they can put you in touch with someone with information on finances. I know my friend ws told when she had her mastectomy to check her mortgage to see if she had critical cover. She did have and her mortgage got paid off. Not saying they can do this for you but there may be ways they can help. Don't try to do it all on your own get help from those in a position to help. I have lost all my hair and although I so want it back in the scheme of things its really not a big deal your health is whats important and worry you can do without. We are all here to help support you all we can. Wishing you all the best. Karen xxxxx

[ria2056]

Hi All

Well things are changing for me, had a call at work Friday and was told I had an appointment with the surgeon on Tuesday.

It turns out that my ultrasound results were not good and the oncologist and surgeon had decided that as my tumour had not shrunk they were going to do the masectomy half way through chemo, so all off a sudden I having surgery on the 8th Sept,

So am now in panic mode trying to contact all the companies my DD go to to arrange different payment, as i am only going to recieve SSP going to be losing £921 a month. Going to try and get back to work after 10 days after surgery.

And to top it all off my hair is falling out, even with the cold cap, things are getting crappier by the day

[Jbf57]

Hi Cas, I'm definitely hoping it's a bike!! xx

[Jbf57]

Thanks Sue and Roxie. Having come through the FEC part quite well, this has really taken me by surprise. My hands have improved over the last two days, but sadly not my feet. The really annoying part has been not being able to walk very far. Whenever I've felt a bit low, I've taken myself off for a good long walk, or gone with a friend, and now I can't even stand putting a pair of shoes on, as every part of my feet seem to hurt! Gosh, what a misery I am! And I'm sure someone has whacked my big toes with a hammer, they're so darned painful! Feel like 102 years old!!!! Here endeth the moan. Like the song says, "things can only get better ....!!!" Best wishes to everyone. Jane xxxxx

[Cas164]

Hi Jane,

I read the first lot of Tax is always the worst as you still have the other chemo in your system so a bit if a double whammy! Likened to being hit by the tax truck! Yes I felt it too! Next dose is meant to be easier so it could be the tax van not truck....... Or if we are really lucky a tax bike!

You are no lightweight girl! To have come this far already shows you are definitely no lightweight!

Casx

[polar_1]

Hi Jane, I have had a horrible time over the last 10 days since changing to TAX so I know how you feel. I have very painful feet especially around the edges of my heels. Hopefully starting to get my appetite back but can sleep for England no problem. Fingers crossed the next one will be better and then only one to go. Sue x

[Roxie65]

Jane we all react differently so your not a lightweight don't put yourself down. You have been really unlucky thats all. x I understand where your coming from as to not wanting the chemo but also wanting it to end lol I think we all can understand you there!!!. I hope all goes well but keep us posted xx

[Jbf57]

Have just got back from seeing oncologist prior to 2nd tax due on 3rd Sept. He has decided to reduce dose by 25% due to neuropathy. He says because the risk of it being permanent is quite high, following this next round if I don't fare any better, they may decide not to give me the final chemo. Also, if I haven't picked up enough physically the next round will be put back a week. Feel like a lightweight, and not sure if this is what I want to happen, which sounds a bit cockeyed, I know, considering how awful my feet, in particular have been. Has anyone else suffered with hand and feet issues?
Hope everyone is holding up, so close to the end now! Wishing you all a good weekend, whatever you've got planned. Best wishes Janexxxx

[Roxie65]

Looking back we all started in June...now coming up to September has been hard for us all but that time has also flown by. Lets hope the time till we are all told we are over this does too!!

Thanks Cas xx