December 2016 Starters

[Snail888]

Wmj I'd take the loratadine after gcsf injections. Probably at first onset of symptoms. It has quite a short half life in the body and there won't be any histamine before the injection. I have 7 days of injections and took 1 tablets on injection day 3 and 4 x

[WMJ]

Morning all,

I too am starting to prepare for cycle 3 on Thursday. I just hope I manage it the same as the last one. However I have felt quite tired the last couple of days, maybe I have overdone things because I felt well in myself. Just hoping my bloods will be fine to go ahead with cycle 3. I Have my Loratadine ready but not entirely sure when to start taking it, was thinking about starting it the evening after I have my chemo so it is in my system before I have the injection. I  will do my usual 24 pre & post fast from noon tomorrow. Like others',  when I give it some thought, I am not looking forward to starting a new drug for C4, I will be on Docetaxol, another set of side effects to consider. Going to try and not think about it for another 3 weeks!

Best of luck to everyone who is about to go back for their next cycle and I hope those of you who have just had the next one are doing okay.

Take care,

XX

[fiddlercrab]

Maybe they'll come to my house and hook me up for the next few days! Someone was telling me about a former housemate who was a medical student and used to cannulate himself and use a drip as a hangover cure!

[Snail888]

I'd tell the nurses and see if you can get a second saline drip to be run through before you leave which will really hydrate you. I have at least a litre over the course of my treatment. The water does make me feel sick to be honest. X

[fiddlercrab]

I struggle with big gulps because that sets off the nausea, while the nozinan makes me sleep too much to drink loads. I think the drip helped in cycle 1 so need to somehow replicate that intake for cycle 3... the bladder thing was awful, had it mildly in cycle 1 and just assumed it was a side effect, but it was so much worse in 2 that I ended up getting it checked out, but because I was needing the loo so often, I couldn't give them a decent sample! More drinking this time, for definite.

[Snail888]

The cyclophosphamide is a bladder irritant. I force myself to take huge gulps of water. Someone told me if you.want to wet a sponge you soak it in a bath. We are the same. No sipping drinking loads and loads should help. Makes me uncomfortable and bloated though xx

[fiddlercrab]

FEC 2 was differently bad. Less nausea in the first few days thanks to extra meds, but days 5-7 were horrible with crazy dreams and probable UTI (or something irritated my bladder big time, needed a wee every hour all night, but nothing really there). 

Pre-chemo bloods and a chat with the oncologist tomorrow, hoping there's a solution to make me feel less awful, FEC 3 on Weds all being well. Kind of dreading the change to T+herceptin for the next cycle. FEC might be horrible but at least I know what's likely to happen!

My aim for this cycle is to drink more. Hard when you are mostly asleep, but it has to be done.

[Agarside]

Yeah,

As had lumpectomy, I will have radiotherapy as well, but how much no idea....

Amanda

x

[Daisy62]

It's awful that we literally make ourselves ill to get better. Bah... not in the best of moods knowing Friday is getting nearer.

[Snail888]

Sara yep periods are worse than before. I'm scheduled for a least 3 weeks of rads maybe more? Won't know until chemo stops xx

[Snail888]

I definitely am more tired and my liver is showing some major abnormalities after 3 rounds. Hoping it passes bloods tomorrow x

[SALowery]

Hi All

Been a bit of an emotional week and now have my 3rd Chemo Friday which I'm not loooking forward to as my emotions go through the roof...

Oncologist won't tell me what side effects to expect with the T cycle so that been playing on my mind, I was also told that after the chemo I have to have 4 weeks of radiotherapy, I wasn't expecting that many!!!! Anybody else having this...

I have have had the period from hell so much for those stopping!!!! 

Wishing everyone a comfortable week

Sara xx

[Daisy62]

My first FEC was awful but by day 6 I felt a whole lot better ... 2nd I was a lot worse and didn't feel ok for 2 weeks ... dreading this Friday 😕

[Snail888]

Third was better for me. Felt more.organised. made sure I drank loads and got myself really warm and put a water bottle on my arm before I got there etc. Sorted hair and cold cap out like a pro and managed to wee with the drip in! Generally make myself at home. X

[Agarside]

Tomorrow is pre chemo bloods, wig fitting (although still have hair albiet looking like a GI Jane just after battle!!) but it is the start of fasting getting ready for next cycle on Thursday.

It is coming around to fast!  I want a more days and this feeling more normal. 😞

So I would like to ask, as most of you are now getting ready for cycle 3, were you well prepared and was it as bad, worse or better than first???

Take care

Amanda

xx

[Running girl 53]

Thanks for the advice Cookiepuss i will give it a go. X

[Agarside]

Cookiepuss:  Happy to speak about my concerns.  Although absolutely aware that mamogrammes do not pick up all cancers, however mine was clear after a recall, so two done in 2015 - the last Oct 26th 2015.

I became aware of a lump in August 2016, and was not worried, neither was my Gp and to begin with neither was breast specialists.  

Tumour removed 26th October 2016.

characatoeristics:

Grade 3 infiltrating duct carcinima NST -  very common

Minor tubular/cribiform grade 1 -  for 50% of tumour.

Within the tumour is:

an Intermediate nuclear grade cribiform & comedo pattern DCIS with also a High nuclear grade cribiform & comedo pattern DCIS. - 2 x DCIS adjacent to each other.  There is also calcification within this DCIS.

Added to this the tumour is noted to have "vascular space invasion" at the edge of the tumour.

my problem is, I have asked all along how on earth I grew a G3 cancer tumour in less than a year, with each professional telling me it can happen.  I have asked in writing and in face to face conversations for someone to show me the mamogrammes from 2015 and the ones taken in Sept 2016 - so I can see for myself the differences.....  I am being fobbed off.  I have also asked many times to have the full reports of the pathology reports (as per NICE guidlines - thank you Bella) and again they were slow to get them.

On research I have done so far, the DCIS can take 3-5 years to go from this to IBC....my DCIS is 16mm.

I need to see this for my own peace of mind, because if this had been picked up a year ago my treatment would be considerably less invasive. 

HTH

[Agarside]

Allthough not a new test in the States, it has only been happening in my Trust less than a year, so maybe you trust has not taken it up yet.  Also, if the recommendation for chemo had already been made, then oncotyping not really needed.  It is a test to help oncologists work out who would benefit from chemo.

hth

A

x

[Cookiepuss]

Andreaj - fair play re the injections.  I'm trying to persuade my OH to do mine next time to save a trip back to the hospital the following day when I'm feeling a bit crap; he did do it the last time under supervision of the nurse but it made him flinch as for some reason they do hurt me when they go in (the nurse said it was the actual GCSF that is stingy).  I can't do it myself as I would just faff about and not have the courage to shove the needle in!

Sorry to hear about the meningioma - I've just Googled it (as I'm sure you have) and it says it is benign and usually requires no treatment.  Nonetheless, it is hard not to worry about these things given what we are all going through and we don't need anything else to worry about.

RunningGirl - definitely keep your fluid levels up.  I was advised to drink at least 2 litres a day in the days before, during and after chemo.  I'm trying to drink at least one litre of water a day and I make the rest up with wine (not really LOL), squash, tonic water and tea just for a bit of a change as water is very boring.  I usually get through a litre of flat Coke in the week after chemo as I find it helps with nausea for me.

Agarside - that's a bit concerning re the medical negligence.  Is that because they missed something.  Obviously don't reply if you would rather not/want to keep it private but I was just interested.

Miserable rainy day where I am so I hope someone, somewhere has got some sunshine.

I've just dug out some exercise DVD's and going to give them a try later to see how I get on.

[Snail888]

Yes I fit the criteria but have not had oncotype dx done. Bit late now as I'm on chemo but wondered why they didn't. Have a npi score instead. Which is worked out based on size and grade and not genetic at all xx

[Agarside]

Oh, I forgot to add....  I managed to get all the copies of my pathology reports, and it was interesting reading.  So much so that I have handed over to a Medical Negligence lawyer to have a look at....

A

xx

[Agarside]

Yes, I had Oncotyping.  Criteria is er+ and lymph negative.

My score came back as 29, hence why with you lovely ladies!

Have seen chemo team (nurse) to see how I have got on, with the "consent" withdrawn for the IV Dex (which I believe caused the reaction to Ondastetron, me spiking a low grade temp and an awful experience in A&E), I never took any of the Dex tablets as for me the side effects out weighed any potential benefits.

Am planning the fast again, using Slimming World principles again with fluids only on Chemo day, as my nausea was like a hangover - and have had a lot worse in my life lol!  Plan now in place in case I have another horrendous period... 

So all should be good this time I hope.

Scalp is incredibly sore, day 18 and hair still there, but now moulting... shaved it all down to a No.2 tonight as it was getting too painful to lie on it... It was my Demi Moore moment lol!!

Have quite a busy week doing "normal" stuff until 19th for Fec 2, hoping bloods all good on 17th.

Thinking of you alll

A

xx

[Snail888]

Did anyone in this group have an oncotype dx test on the NHS?

[Running girl 53]

Andreaj,
Thanks for the info. Will definately try fasting again. Going to try to drink more water too to flush it out. Sorry to hear about the benign brain tumour. I can indeed understand your concern. All i can say is that all of us are going to be checked and monitored regularly and we should take comfort from that. Its good that they are not concerned. Hope you feel ok about it. Xxx

[Andreaj]

Running girl Im not saying I did it right by any means and tbh I felt damn rough while fasting, was actually sick just an hour before having to leave for chemo .. far from ideal but ...

Three days before chemo I had protein only for one full day so eggs chicken meat no milk no carbs and green tea.

Next day green tea only, but about 4pm felt bad so ended up eating a hard boiled egg which did help with the nausea and feeling exhausted.

Last day green tea, hard boiled egg mid afternoon as feeling bad, 1/3 cup of vegetable stock made from home veg.

next day had chemo at 1:30

green tea only until 2 pm following day... 

started eating drinking normally and felt better than when fasting even though I had had chemo only 24 hours before

On the whole the difference for me has been dramatic, I kind of swapped a full week of feeling bad after chemo and then anther week of feeling rough (two weeks of recovering from chemo) -for four days of feeling rotten on the fast, and then having chemo and being really not too bad even on first few days.

plus I feel for me it has been better in other ways .. no sore mouth, much more energy, less nausea, less brain fog.

Im on day five just now after chemo 2 fec and went shopping walked the dog etc today and will be going to work next week. No WAY could I have done that last round

I have no idea if it will work the same for me next round but I am going to do it again.  I have bought stuff to make miso soup this time to have instead of boiled eggs which I had as I was worried they wouldnt do chemo as I looked so ill.

I had originally thought I could go entirely without food but my body had other ideas so Im better prepared this time round I hope.

On a rather less postive note has anyone else had any experience of meningioma? Having been told my brain scan was ok last month the consultant mentioned that I actually have a suspected benign brain tumour which is in his words nothing to worry about and not connected to the breast cancer.

Now I have done my best not to worry but as you can imagine it has popped up in my mind now and then!! 

[Running girl 53]

Andreaj,
How did you approach fasting? Last time i ate reduced calories day before chemo and day of treatment. Had an hour or two delay before onset of symptoms but after that it was as bad as first time. Really want to do all i can to reduce side effects this time.

[Andreaj]

Morning everyone and I hope its an easier one

Gave myself my first GCSF injection this morning, Im not too bad with needles but I had sort of been hyping myself up for it since they gave me the bloomin things so it was a releif to get it over and done with, was releived to see it was such a teeny needle and actually suprised it was painless..wasnt ready for the wierd click noise when it was fully injected and that the needle vanishes into the body of the syringe..had a moments panic when I thought I had broken the needle off in my belly ..ICK ! but its fine phew ..

Really feel for you ladies struggling with liver issues it sounds as though you can do everything you can think of but still you feel unwell and are up against it (((( very gentle sisterly HUGS )))))

feeling rough right through treatment must be nightmarish I can only hope that it gets easier to tolerate and every day done is a day closer to the end of this,

For me fasting seems to have been a massive help even though it made me so ill while on it - far less symptoms this round I only hope its not just some odd fluke - I do of course appreciate that some can not fast, I jsut wanted to put it down so that anyone wandering by reading this might be able to consider it for themselves as its been so positive for me so far

[Cookiepuss]

WMJ - yes, same here.  First FEC cycle no problem but during the second cycle my arm was very cold near the wrist area and during the last 30 minutes of the chemo my bicep started to hurt and by the time it finished it was painful. 

It eased off a bit once the cannula was taken out but a couple of days later I was struggling to move my arm or straighten it out as the area from the crook of my elbow to my shoulder hurt, the skin was faintly bruised and I had a red mark by my wrist and the vein seemed hard.

I went back to the hospital and they prescribed some Huidroid (not sure of spelling) cream and advised me to keep moving my arm, stretching it etc.  The cream and stretching has helped with the arm movement and although I can straighten it, I can feel it "pulling" on the vein still.

I still have the red mark - the oncologist said it was phlebitis.  He said it was very common as the FEC is hard on the veins.

Moving the arm around definitely helps.

[Snail888]

That's exactly how mine was for about 5 days this cycle and still a bit tender. I kept it warm and stretched as much as I could x

[fiddlercrab]

My chemo arm feels bruised but there isn't a visible bruise. I asked about it at the last session, and the nurse described it exactly (hurts when you reach/stretch for something) and said it was normal. What she didn't say is whether there is anything I can do to help! So I am going to ask at my next appointment.

Booked myself on the look good feel better workshop for March, better be good!

[Snail888]

I get the same every time about day 10. This time after fec 3 my bicep really hurt for about 4 days and I had to keep it really warm xx

[WMJ]

Morning Ladies,

Anyone had any delays bruising to the arm they had chemo in?

My veins have been more painful on cycle 2, I have my chemo via cannula.

Yesterday, day 15, I noticed bruising on my forearm and near to my elbow. It isn't along the vein but across the arm. I thought I had probably knocked it but couldn't remember doing it. OH insisted  I rung help line, which Inhave and they said keep an eye on it but as I am so far through cycle probably unrelated. 

I am half expecting a call back and for my bloods to need checking. Although hoping not as I actually have a nice day planned now I am passed my most susceptible time! 

Anyone else had any issues like this?

Must say I have been fairly happy with how I have been this cycle, no real issues. I am Sorry to hear about all those of you who have had a difficult time for various reasons. However I have kept myself fairly isolated, specifically day 7-14 and only eat my own home prepared food etc. 

Have a good day and hope everyone is doing well or at the very least improving 

XX

[Rooner999]

Cookiepuss - yes defo worth going to the class, I actually went to my sons options evening at school tonight in my wig (first wear as I didn't want his friends to see me bald) and I used the tips from last night to boost my make up and I felt confident (with my look not the wig - hated that and now realise I prefer the bald look). I've looked up some of items in the goody bag (clarins, urban decay, paco rabane, Clinique, L'Oréal, boots no7) and it's at least £300 worth.

[Cookiepuss]

Rooner - I was debating whether to book on one of the Look Good courses but may look at it if you recommend.  My closest hospital that runs them is a bit of a trek (probably an hour each way) and easier to get to on the train which is why I've not bothered booking up.  I did see that I could order a DVD (for a small donation) which I might consider but I like the idea of some freebies!

I too was under the impression that the Dex acts as a combined anti-nausea and to prevent an allergic reaction to the chemo drugs.  They do give me insomnia but once I finish the course (3 days) then my sleep pattern goes back to near enough normal pretty quickly afterwards.  The only thing is the very vivid and weird dreams which I am still having.

These are on my "must take" list of meds rather than optional so would be a bit wary about reducing or not taking them.

I had my next pre-chemo check with the oncologist this morning and all OK for next week pending blood tests.  They debated fitting a port as I've had problems with my arm/veins being very sore after the last cycle.  However, they only fit them under general anaesthetic which I am not keen on plus they said it may not have healed up enough in time for the next cycle.

So I think they are going to do the last FEC cycle in the same arm but will use a different vein (?) and put it through much more slowly to see if that helps.  I'm also to take some paracetamol and codeine beforehand to try and alleviate the pain that I got in the last 30 minutes.  They will then consider doing the first T cycle in my other arm to give my right arm 6 weeks to recover again.  As I've not had surgery yet they can use both arms but he was very reluctant to put the FEC in on the same side as the tumours.  Hey ho will see how that pans out next week.

[Snail888]

It may well be viral. Best thing we can do is relax and let the liver do.its thing x

[Alieck]

Thanks snail888, I very rarely drink alcohol and have not done so for the last 3 months- so it can't be that. I did go out for a walk last night but struggled at the end but glad I did. I know what you mean about being fed up- not usually a half empty type of person myself but you struggle to see the positives sometimes. xx

[Snail888]

Hi Alison I think.its the c part that does for the liver. I'm so fed up. I've done everything I can to try and not upset liver. Onc initially said it was all the booze at Christmas. Pointed out I am tee total and have been for.over 3 years. The only thing I have changed is exercising every day! I hope your next round improves x

[Alieck]

Hi all, I am now 8 days post second chemo of TCH. I realise most of you are on FEC/FEC-T and the side effects are slightly different to mine. I only had two good days before my second chemo so they reduced my dosage by  20% due to liver problems and side effects including blurred vision and constant metallic taste. I am feeling a bit better today but the side effects came on quicker than last time with the reduced dosage. I am struggling to think that I can manage the remaining 4 doses and that is not like me.  Meeting with the oncologist on Saturday to see where we are with the side effects this time. Glad to see that the majority of you are getting over the second round and managing some sort of normality especially with your pamper days. Alison xx

[fiddlercrab]

Yes, that's my understanding too, although they did say they also act as an antisickness? 

Had a heart scan today as a baseline for herceptin, hoping the consultant will have the results on Tuesday at my appointment. Not that it matters yet because I still have another FEC cycle to go, but I am starting to hate having results outstanding!

[Snail888]

My understanding of steroids is that they reduce cortisone which can cause allergic reactions. When my dad was on docetaxyl he had to have prednisone all the time and high levels of dexa before during and after treatment. I don't enjoy my 3 days of dexa my face burns I get heartburn and I can't sleep.
Had my onc meeting goes today and liver is off again so treatment is likely to be delayed or stop. Grrr

[fiddlercrab]

Interesting convo about Dex. I am getting vivid dreams but not until after I have stopped taking it, but if it accumulates...

I keep forgetting to book on the Look Good thing, must dig out the piece of paper and give them a call. Not really (not at all) a make up person so need all the help I can get!

Hull? I'm there!

[Andreaj]

Agarside

that is so interesting on Dex thanks for sharing that.

I will be very interested to know your consultants input on the reason it is needed. I have taken a morning and lunchtime dose of 2mg today simply because I am concerned about reducing without being sure, its a tough time to be taking decisions like this grr - plus this morning I felt so tired and simply didnt want to move and wondered if I was supposed to perservere.

I am leaning toward removing/drastically reducing from my script too especially since I see it attacks neutraphils and I was in ae last round with neutraphilapinia (have injections this time though)

Ah so you are up for May its not in Hull by any chance is it? Thats where Im going...looking forward to it too.

Andrea

[Agarside]

I am also booked on a pamper day....in May!
A
X

[Agarside]

Andreaj, what I read about Dex prior to starting chemo, was not encouraging. But each has to weigh benefits against risk, I personally found side effects to be too great. Also the adding dex to this regime is now "routine" and not based on any actual evidence that I could find - I am pretty good at finding it!

I was coerced into taking Dex in IV which was of no benefit and only appears to enhance Ondasetron, I lit up like a beacon and temp spiked! Also dex has a significant half life so each time you take it is accumulative. I have my Oncology appt today so I will be withdrawing my consent for Dex and expecting Oncologist to sign this off unless she can produce some good quality evidence.

A
X

[Andreaj]

Morning Girls

day three and feeling lots better than last round though really think the steriods dont suit me I knocked one off last night yet Im on a lower dose this time only 2mg three times a day.  Felt whizzy jittery and weird yesterday and couldnt stop talking which isnt like me btw 🙂 Decided not to have the eve dose but got to bed and couldnt close my eyes or be in the dark because I had the most horrible hallucinations appearing faces and horrid things ... feel rather pathetic admitting I had to use a night light because it was so nasty and realistic.

Today did a google and am pretty sure this is down to the Dexo steriod plus the odd rash I have is on their list so am cutting those back today to one only and see how it goes.

I caught sight of myself in the big mirror in our room yesterday and was horrified we were just sitting talking me and OH and there was this bald pale old woman with no front teeth and I thought OMG I cant let him see me like this every day who the hell am I now? I had my part denture in to soak which I dont normally ever do when anyone else is around but I was being careful about mouth hygene so... 

nuff said I have booked onto the look good feel better course but cant do it til May as its not close to me and I have to fit it around when I can work it. Until then I am kicking myself up the bum and determined to sort myself out.  At least some of the time!

WMJ the lack of chin hairs is the one thing I have found to be great too..at least I dont have to go hunting for those for a while lol

cookiepuss ah so its not just me with the odd boob sensation..sorry you have it too but its a bit of a releif with the other odd reactions I seem to be getting just now, will be interesting to see what your onc says.

Anyway have a good one girlies X

[Running girl 53]

Hi all
I attended a pamper yourself pink session at my local hospital which was brill. Lots of free goodies and lessons on how to do eyebrows when they have gone and define eyes when lashes are gone. Being amongst a group of ladies in the same boat really helped too. I try to make an effort with some make up every day, when i am at work i have to as i'm a receptionist and need to look presentable. However even when i am at home i have a little on as when i look in the mirror i need to see me not a poorly person. Some of my strongest memories of my sister during her treatment was how poorly she looked and just not her. I am really fighting against that as i really can't cope deep down with seeing me look like that. Don't get me wrong when i feel really crap after treatment i just hibernate and try not to look at myself but in reality that is only a few days (even though it feels like an eternity). Little things really help, like a new lipgloss or a nice bronzer and highlighter just to give your skin a glow. It works for me anyway. Spoil yourselves a bit you deserve it. Xxxx

[Snail888]

Great Rooney. I think I need to go on one I feel.fat bloated and very unfeminine. The hair that is hanging on looks a state and I have the prospects of telling work this week I'm actually going off sick. I have to call my local hospital to get on a course. I'm doing it tomorrow xx

[Rooner999]

Ladies. I've been to a 'look good, feel great' evening at the hospital tonight. It was awesome; really enjoyed it and got an amazing goody bag with hundreds of pounds of goodies. Highly reccomend if one near you

[Running girl 53]

Thanks Cookiepuss but i'm sure you look good too. I've got full make up on in that photo, you should see me au naturelle! On a serious note it really doesn't do anything for my ego when the slap comes off! Using more make up now as the boundary has moved! Lol. X

[Cookiepuss]

RunningGirl - you look really good with no hair!  Tis not fair!!!  I look like a cross between Sinead O'Connor and Uncle Fester at the moment.

Fiddlercrab - I'm not brave enough either; the only person to see me sans hair is OH and even then it is not for very long.

WMJ - same here, stubbly head still shedding and I have to  vac my hats after each wear.

AndreaJ - yes I get the odd stabbing pain in the area of my lumps and am hoping this is the chemo zapping the buggers.  And my boobs are noticeably lopsided now - not sure if that was the biopsy but I have my next pre-chemo appointment tomorrow and the oncologist said he would have a look.

I went into work this morning and one of the guys said how nice my hair looked; said it was a nice cut and colour so hurrah for the wig. 

If anyone is looking for sleep caps, I ordered some via Amazon from Deresina Headwear and they arrived today - they are lovely and soft so can highly recommend.

Well it's been a sunny (although windy) day here but need to don my thermals now as we are without heating until next week.