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December 2016 Starters

Snail888
Member

Re: December 2016 Starters

Oh agarside im sorry to hear that youre not well. Could you have a gall stone stuck? Worth asking if you feel up to it. Hope things feel better in a few hours xx
SALowery
Member

Re: December 2016 Starters

How lovely Rooney and so true we will all get through this together 

Evie-S
Community Champion

Re: December 2016 Starters

Rooner - that's such a lovely message, just so perfect and so kind (and of course has made me cry). xx

Rooner999
Member

Re: December 2016 Starters

Thinking of everyone who's having a tough time; we are getting there as a team guys and we've come through so much...great for those of us who have our last chemo this month..to those delayed we will still be here with you xxx
Running girl 53
Member

Re: December 2016 Starters

Cookiepuss, sorry to hear your treatment jas been delayed. Sympathise with you over the cannula problem. It happend to me too but they had another go the day after and was succesful but i had a hickman line fitted before my first T and it made my treatment so much less stressful.
I can't be sure how T affected me as i have been told by my onc that the flu like symptoms i had were caused by the daily injections to boost white cells. I didn't really have any aches or joint pain. Will have to wait and see this time but hospital seemed sure i could expect the same again.
Good luck to those having treatment tomorrow. Love to all. Xxx
Evie-S
Community Champion

Re: December 2016 Starters

Oh Agarside - I'm so so sorry to hear that and sending you lots of get well wishes and hugs. I hope it isn't what you suggest. At least you are in the right place to get sorted. Please keep us posted - obviously when you can.

Lots of love

Evie xx

Agarside
Member

Re: December 2016 Starters

Hi all
All was going reasonably well although T1 delayed a week. But here I am in A&E again with the most horrendous pain in right side if chest cavity.
Morphine is my friend. Bloods clotted to had to redo. The thought is a possible PE on lung..*sigh*
It never seems to end..
A
X
Evie-S
Community Champion

Re: December 2016 Starters

Hi Mooney - I had 3xT first and am now on FEC, whereas it seems most people have FEC first. T is very different for everyone and seems to have more varied side effects than FEC. Have you completed all FEC? And how was that? My first 2 cycles were very different to the last T. As you will get lots of steroids for the first few days, they tend to be ok. So days 4 and 5 were the worst for all T, aches, general grim illness, but then things usually picked up slowly. I would ask for good pain killers. I wasn't sure if the aches were the T or the bone marrow injection but it must have been T as I didn't get the same pains with FEC. With T3 I got very sore feet and didn't bounce back so quickly. With FEC I have had severe nausea but I didn't have any nausea with T. Taste buds disappeared for almost everyone on this forum I think.

It would be easy for me to say don't worry too much - but I was a mess worrying about FEC after T. However, the lovely ladies on here reassured me and I hope we can try to help you too. Jacquie had a particulary rough time, as it seems did your friend, but that doesn't mean that you will. The best advice was from WMJ to take things one day at a time and I keep reminding myself of that advice.

Sorry for that long essay - chemo brain means I ramble a lot! Happy to answer any questions you have. xx

Evie-S
Community Champion

Re: December 2016 Starters

LennyGK - yes that sums up T doesn't it. But at least this time you know what to expect - not that it makes it much easier, just that it doesn't sort of ambush you in the same way. Sending you lots of strength to help you make it to your daughter's first confession. My days 4 and 5 were worst so I hope that you also start to improve on day 6 (tuesday). 

Thanks for asking - glad to say the effects of FEC are easing now, but still have the extreme tiredness. Dreading FEC 2 though after last time - but seeing onc tomorrow to ask for the strongest possible drugs. xx

LennyGK
Member

Re: December 2016 Starters

Thanks Evie - feeling okay so far but know it's the calm before the storm! My daughter is making her first confession at school on Tuesday and I'm panicking that I won't make it as last time the Tuesday was my worst day! Fingers crossed! 

Hope you are keeping well! xox

Mooney
Member

Re: December 2016 Starters

Good evening everyone, I come from Jan 2017 thread and I occasionally post here but lurk a lot. Firstly so sorry about your mum Cockie puss such a blow to you and your family. As if you haven't enough to deal with I send my love thoughts and lots and strength and courage to you. My question is about T and how best to prepare. I had a friend have her first T 10 days ago and she has been in a dreadful state and it has scared me. My consultant is on holiday this week so I don't have my onc appt until next Thursday my first T is on Tuesday. He has left me some oromorph and told me to take it if paracetamol and Brufen don't work!
Any ideas gratefully received.
love and hugs to you all
Mooneyxxx
Evie-S
Community Champion

Re: December 2016 Starters

Cookiepuss - sorry that T2 has been delayed, but as you say maybe that's good so your hands can recover. WMJ and I have both had ports fitted if you have any questions we can help with. One tip - ask for EMLA cream to numb the port before they use it any time. You put it on about an hour before they want to inject/take bloods and it really helps (I am a big wimp so take anything I can get).

 

LennyGK - hope you are ok with T2. Sorry I didn't mention you earlier, I know most of this group are a week ahead of me but with chemo brain I can't remember exactly who is when.

 

xx

 

 

LennyGK
Member

Re: December 2016 Starters

Cookiepuss - just logged on as I was away getting T2 today. 

 

I am am so so sorry to hear about your mum. That's such sad news and it's just so unfair on top of what you are going through 💕

 

You' re in my thoughts xox

Cookiepuss
Member

Re: December 2016 Starters

Thank you so much everyone for your condolences. It's been so bloody hard these last few weeks and I appreciate everyone's messages.

Cycle 2 of T was cancelled today after 3 attempts to get the cannula and line in failed. I've admitted defeat and I'm having a port fitted on Saturday morning. Really didn't want to but my veins have had it so no option. So delay of a week but I think it probably best as it gives a bit more time for my peeling hands to recover too.
Evie-S
Community Champion

Re: December 2016 Starters

Cookiepuss - thinking you especially as I think on top of everything else you have T2 today. How are you?

 

Fiddlercrab - sorry the taste buds are going. FEC is different but still can't wait for food to taste good again.

 

Rooner, SALowery and Running Girl - all the best for T2 tomorrow.

 

Hugs to everyone. xx

fiddlercrab
Member

Re: December 2016 Starters

Hi Corrina. There's some information about the oncotype-dx test here: https://www.breastcancercare.org.uk/oncotype-dx

That's the one they do to work out whether or not chemo will be a benefit to you in your particular situation.

fiddlercrab
Member

Re: December 2016 Starters

Ugh, my tastebuds are already departing. That bag of crisps tasted rubbish. My own lips taste weird. Now the challenge is to keep drinking enough weird tasting water...

SALowery
Member

Re: December 2016 Starters

Hi Corinna

My bc is triple negative bc and this is caused by a genetic faulty gene if it comes back positive I'm at much higher risk of it coming back and will be offered a double mastectomy and ovaries removed and both my children will have a 50% chance also have having this faulty gene... so I'm just hoping I don't have it as I'm petrified of the knock on effect...

Xx
Agarside
Member

Re: December 2016 Starters

Corrina, are you talking about "oncotyping"?

I had this, hence why here.

 

The criteria for it is er+ node negative.

The turmour is sent to US for genetic testing, chemo brain cant remember exactly how many, think 12.

Your tumour is given a "score" on likelyhood of returning and if chemo will make a difference to outcome or life expectancy.

 

0-18 - no benefit from chemo from current evidences.

19-30 - intermediate - but does come down to oncologist experience and grade of tumour.  Generally those with 25+ tend to accept chemo and it is mostly offered.

31+ - major benefit of chemo.

 

Mine was 29.

 

HTH

Amanda

x

Corrina
Member

Re: December 2016 Starters

HI SALowrey just wandering what genetic test results your waiting for? as I have been told there is a test to see if you would benefit from having chemo or not but i dont know much about it and wander if this might be the test you have had. ??and if so could you please tell me about it  thanks as might ask about this when I meet with the oncologist x

SALowery
Member

Re: December 2016 Starters

Rooner great news on the dress it will be perfect in 5 months....

Rooner and Running girl I'm in the same cycles as you so after Friday there's only 1 yay I so can't wait then I have 4 weeks of radiotherapy and waiting for my genetic tests to come back

Hope everyone else is doing well and sending love

Sara
SALowery
Member

Re: December 2016 Starters

Cookiepuss sending you big hugs I'm so sorry for your news... sending hugs
WMJ
Member

Re: December 2016 Starters

Cookiepuss you are in all our thoughts at this sad time. Sending you a big hug and hoping you have lots of support. X
RobinJ
Member

Re: December 2016 Starters

Cookiepuss, I'm really sorry to hear the sad news about your mum.  You have so much to cope with.  Hope you are getting lots of support.  Sending love.  R x

Agarside
Member

Re: December 2016 Starters

Oh my Cookiepuss, I am so sorry to hear of your sad news.

Your are in my thoughts and prayers..

A

x

 

 

Running girl 53
Member

Re: December 2016 Starters

Cookiepuss so sorry to hear about your Mom. I can't imagine how you must be feeling with side effects too. Just want you to know i'm thinking of you. We're all here for you. Xxx
Evie-S
Community Champion

Re: December 2016 Starters

Cookiepuss - I'm so so sorry to hear about your Mum. Sending lots of love and hugs. xx

fiddlercrab
Member

Re: December 2016 Starters

So sorry, Cookiepuss xx

Rooner999
Member

Re: December 2016 Starters

Thank you all, really chuffed about the dress.

Cookiepuss - so sorry for your loss, just awful for you with everything you have on your plate xx
Snail888
Member

Re: December 2016 Starters

All i can offer is a virtual hug cookiepuss. Be kind to yourself xxxx
Jacquie48
Member

Re: December 2016 Starters

Oh Cookiepuss I'm so sorry about your mum. You're dealing with so much. Sending a big hug. Xxx
Cookiepuss
Member

Re: December 2016 Starters

Evening everyone - it's been a pretty crap week for me. As well as the side effects from the T giving me a battering my Mum sadly passed away last Friday so I feel like I've had my legs taken out from under me when I was already on my knees.

I've got second T tomorrow but the oncologist is reducing the dosage to see if that helps mitigate some of the SEs. The downside is that he wants to give me an extra cycle to make up for it so I'm a bit disappointed that I thought I would only have one cycle left after tomorrow but now it's gone up again. Hey ho!

Rooner good news re the dress and I agree that 5 months will be plenty of time to ensure it's a perfect fit.

Good luck to everyone having T in the next couple of days x
Running girl 53
Member

Re: December 2016 Starters

Rooner fab news about the dress! Brilliant.! Good luck with T on friday. I'm the same as you my final one on 24th too. Finally seeing light at the end of the tunnel!
Fiddlercrab hope treatment went ok. Xx
Snail888
Member

Re: December 2016 Starters

Rooner so happy for you re dress. Something wonderful to look forward to xx
Evie-S
Community Champion

Re: December 2016 Starters

Well done Fiddlercrab. Good to be able to see the end of this. Hope T2 is kind. xx

fiddlercrab
Member

Re: December 2016 Starters

Great news about the dress Rooner, 5 months is ages to make it that little bit less snug!

 

T2 and H2 done! Only one more chemo to go. Had to be recannulated half way through as it was starting to hurt, but as the nurse said, recannulation is better than the treatment for extravasation. Just waiting for the side effects now, but by the end of this month, I should be over the worst bits of my last chemo. 

 

The oncologist should be ordering my end-of-chemo scans, so we'll see what that means for surgery, although mastectomy is still the most likely outcome regardless. I think it's the nodes they need to decide on.

Evie-S
Community Champion

Re: December 2016 Starters

Oh no - another chemo moment, who is WTM? I meant WMJ!!

Evie-S
Community Champion

Re: December 2016 Starters

I agree with WTM, wonderful to hear how well the dress fitting went Rooner. So happy for you. xx

 

 

WMJ
Member

Re: December 2016 Starters

Great news Rooner999 about the dress. We all need a bit of good news. X
Rooner999
Member

Re: December 2016 Starters

The dress fitted..yay yay! Can't tell you how happy I am; a bit tight but 5 months to get sorted once chemo done. Been to Tesco were 2 people had to do a double take as they didn't realise it was me (bald) but they stopped and chatted rather than pretending they didn't see me (that's happened before) so all good...Bring on T 2 on Friday and final blast on the 24th.... 👍🏼
WMJ
Member

Re: December 2016 Starters

Hi Wtp, I have been on E&C and am now on weekly Paclitaxol. I have found it so much easier than E&C, however I was lucky enough to have had very few SE from the E& C but unfortunately I had a severe allergic reaction to the GCSF & or Steroids. Now that I am on weekly P I have been weened off the Steroids and don't have GCSF, which means I no longer have the allergic reaction. What I have found with the weekly dose is because I felt so well I may have overdone things, as this week I have been exhausted. I cannot say I want to sleep  or indeed are falling asleep but have very little energy and feel as though I am walking through treacle, my legs feel as though they are made of lead! I am just hoping that my bloods are fine tomorrow in order to have my 4th  treatment? Unsure sure if that is of any use. Best of luck. X

Evie-S
Community Champion

Re: December 2016 Starters

Morning Everyone

 

Fiddlercrab - hope all goes well with T2 today.

 

Running Girl - loved your post, you put it perfectly about how great this forum is, and also replying to Rooner's post. I'm sure weight will all settle once we get past this and you are clearly a very active lady so that will help.

 

Rooner - How could anyone mistake you for a man? We have seen the photo - you don't. Reminded me of when I took my 6 month old daughter with me when I went to the optician. She was dressed in a lilac flowery dress and the optician asked me if she was a boy or girl. Honestly, some people!! Re your wedding dress - do you think trying on the dress with a wig or pretty scarf would help at all? It will be a slightly more challenging appointment today - but I really hope you put on the dress and feel like the gorgeous goddess/princess/lady that you are. Do let us know.

 

Agarside - when will you have T1 do you think? Glad the Feel Good session was such a hit.

 

Wtp2016 - sorry I can't help you as I had 3 three weekly Ts - except to say that I had no nausea with T and loads with FEC. All the very best to you for your new weekly doses.

 

Have a good day everyone. xx

Wtp2016
Member

Re: December 2016 Starters

Hi Dec peeps! Hope you don't mind me hopping over from Jan forum on the hunt for some insight...
I've just finished 4 rounds of EC and am due to start weekly T (x12) in March.
Have any of you had a similar regime? How did the SEs compare? I've got used to having at least one good week in every three on EC and not sure whether to expect to feel constantly blurgh if I'm having it weekly or if the weekly smaller dose is much easier to handle? Is it true that there is less nausea?
I'd be really grateful to hear of your experiences.
Thanks so much - sending you all hugs and strength xxx
Running girl 53
Member

Re: December 2016 Starters

Snail sorry to hear your news. Keeping everything crossed for you. Xxx
Have caught up on everyones posts. I'm so glad i joined this forum. Keeping in touch with everyone and the mixed experiences we all have really helps. On here i feel normal and we are facing it together, whereas away from this no matter how much support i have as i'm the only one going through it i feel like i'm wearing a badge saying "hi i'm having treatment for cancer"
I'm not a violent person but if someone asked me if i'd shaved my head for charity Rooner i think i'd have punched them! As for being mistaken for a man sadly thats happend a few times when i had hair! Hope the wedding dress fit goes well. Xx
I too have put loads of weight on. I seem to be heavier everytime i step on the scales. I know i'm not excercising like i usually do and definately eating a bit more than usual but even when i do watch what i'm eating and get out for a walk ( 6 miles sunday with lots of hills too) i still put weight on. Can't wait to finish chemo and start getting back to normal.
Wishing you all a happy Wednesday and hope everyone feeling better. Xxx
Agarside
Member

Re: December 2016 Starters

Hi All,

 

Hope everyone is improving daily.

 

Today, I made the decision to delay my T1, my RBC has gone from 118 to 119 (down from 137), it is just not high enough for me to potentially take another hit, I am so worn out and taking iron supplements as it is.  

 

I had a lovely afternoon, with the Look Good, Feel Good session.  As someone who wears make up, it was a bit boring at times, but with my stubby lashes quite depressing! but have got some lovely freebies and my DD2 got first refusal on the things I didnt want, so we are a happy household tonight!

I met some absolutely wonderfully strong women going through hell and still keeping cheerful I was in awe, I am starting to see an end in sight and getting more motivated to do things, but my body feels 20 years older and I wonder if I will ever be the same again....

 

much love to all

Amanda

xx

 

 

Rooner999
Member

Re: December 2016 Starters

Sorry to hear your news snail; fingers crossed all will be well.

Evie - love it! Glad I'm not the only one.

I got mistaken for a man at work yesterday and then asked if I had shaven my head for charity!!!! Wedding dress is in and off for first fitting tomorrow; mixed emotion as I've put on weight so really worried about the fit and putting it on with no hair. Taking mother, so if I have a meltdown I've got back up.!
WMJ
Member

Re: December 2016 Starters

Snail888 sorry to hear your news. It will be a difficult time waiting, hopefully you will get it looked at sooner than you thought. I have a lump near my scar which I assume is scar tissue.
Thanks Evie, yes although still low in energy, definately improved, had another fairly lazy day, tomorrow will be the same.
I have some clusters of red spots with a pinhead sized whitehead. They are mostly on my chest but I have a few on my neck, face & one on each arm. Anyone else had anything similar?
Evie-S
Community Champion

Re: December 2016 Starters

Ok Rooner - here's my daft story for today, chemo brain defnitely. I fancied a poached egg at lunchtime - got the pan out, put water in etc etc, set the timer, made the toast - timer went off, lifted the lid and I had forgotten to put the egg in the pan...... xx

OldDawn63
Member

Re: December 2016 Starters

I have not been on this thread for a while for which I apologise. I have been reading back through your posts, and I am sorry to see that so many of you have had a really bad time with your first T or FEC, particularly Jacquie48. T can be fiendishly deceptive at first because the steroids keep the SEs at bay for the first few days and make you think it's easy. Most of you have got through it or have had changes that will make it easier, so well done to all of you for coping so far. Snail888 - try not to worry about new lump which has appeared following surgery. I had one as well. The surgeon, two oncologists and two nurses all had a good look at it and confirmed what I thought - it is just fluid and scar tissue. It's mostly gone now. Jacquie48 - there's really nothing helpful I can say except that you did manage 4 cycles, which is a lot, and probably enough to do the job. I am no expert, but my own experience suggests that the standard 6 cycles of chemotherapy is probably more than many of us actually need. I had neo adjuvant chemotherapy, and 5 cycles (3 FEC, 2T + Herceptin and Perjeta) was enough to shrink my tumour very significantly. Chloe on the November Starters thread has had an even better result. Rooner999 - I am seriously impressed about the decorating, I don't think I could have done anything like that when I was at the same stage as you, and would probably struggle now (our lounge needs doing, so if you're stuck for something to do let me know!). Mind you, I probably could have painted the Forth Bridge towards the end of my first FEC cycle, when I was on steroids throughout and completely manic/ hyperactive. Andreaj - hope you are feeling better now. It is a disgrace that the hospital wouldn't help you unless you went to A&E, so I don't blame you for complaining. I have seen from other posts that many others have benefitted from Loratadine, and as it's cheap and readily available it's certainly worth trying. I was extremely lucky not to get severe pains at any time during my chemotherapy, and all I needed was Paracetamol for the first 2 or 3 days of the T cycles. The only tip I can offer on pain control is to take the painkillers before the next infusion, because it is more effective at controlling the pain than if you take them after the pain has kicked in. The nurses always gave me a couple of Paracetamol before each T infusion and I found it very effective. Sorry for long post, but hope it helps, and that the rest of your treatment is more manageable. At least you now know what to expect, so the remaining stages of your treatment will hopefully be less scary.
Evie-S
Community Champion

Re: December 2016 Starters

Oh Snail I'm sorry to hear that. I'm no doctor but I'm sure they would have seen (and later removed) all suspicious lumps when they did the initial ultrasound and MRI. If it has only come since surgery then maybe it's something to do with the surgery (again I am not at all medical)? I totally understand your concerns though, I think we will all worry for ever about finding more lumps/tumours. Can you not get an ultrasound quicker - I thought there is a government rule about any lumps being checked within 2 weeks?

Sending big hugs.

Love, Evie xx