Starting Chemo in February 2013: February Valentines

Oh Kath , you do make me laugh!! Love the Gremlins poem. Brilliant. What a talented lady you are. And the death of Dough Boy is so funny!

Just a quickie for now. I am gobsmacked once again. Had my pre-chemo talk and a 20 minute DVD about chemo in general. I was supposed to see my onc again as he wanted to discuss a different treatment plan, but he had been called away so the Chemo ward sister had to explain it to me.

The Consultant oncologist suggested I change from FEC x 6 followed by Herceptin to TCH x 6. This is Docetaxel (T) plus Carboplatin (C) plus Herceptin (H.). Then another 12 Herceptins. I asked why the change, and it is apparently because of my age!!! At 65 they like to consider the likelyhood of future cardiac problems, and even though I have no current or past heart problems, I am 65 years old. The FEC x 6 regime in addition to Herceptin is harder on the heart apparently. Who am I to argue, but I now have lots of research to do on the Carboplatin as I have never heard of it. She did give me a leaflet about it.

Anyone else on Carboplatin?

And YAY!!! I got a start date. Next Monday for the first Herceptin, and Tuesday for the first TC.

I can’t have the portacath fitted until 3rd April as they are so busy, but she looked at the back of my hand and said I have splendid veins and one cycle on a normal cannula will not harm me.

Take care all of you , Linda xxx

Yay! Thats great Linda - a start date! Now you can count off the days till treatment ends! There’s light at the end of the tunnel!
Gremlins poem is a masterpiece Kath.
I have been wearing my wig since 11 am and at times I even forget its not my own hair. What a relief x
Tup

So chuffed you finally have answers Linda. They changed me for reasons of my heart too. Lucky you and your veins too lol make sure they give you some sort of pain relief when you have port for at night to help sleep I found it a little uncomfortable and believe me you need sleep. xx

Just a quick post and dash, but Kath , board gremlins is brilliant!!

Linda , fantastic that you have a start date.

Had my nadir blood check today (day 11 of FEC2)… I’m neutropenic again, despite having had neulasta this time. My neuts are at 0.6, so not as low as last time yet. As I’m not showing any signs of infection they’re happy for me to stay at home, but have to keep a close eye on my temperature and be extra careful about catching infections… grrrr.

Jo

Fec T
Fec 2, day 19

Hooray, HOORAY, Linda’s got a date, Linda’s got a date. Fantastic news Linda.

I notice that a few names have been missing for a few days, Karen, Alison, Louise, Fighting Fit, oh ecky thump, I’ve forgotten a lot of names.

So many younger ones with fertility problems. I can’t imagine how you are all feeling but I hope that things will work out in the end for you.

I’m off to the onco tomorrow and blood test, Fec 3 (final one) on Thursday, all being well. Can’t get my head round the fact that I’m HALF WAY THROUGH!!!

I keep meaning to phone BCN to ask for a copy of my path report, but I really don’t like to bother her. She’s ok, but I don’t feel she is pulling her weight all the time. I thought about asking my GP if she has a copy and could she send me one?
Another issue I have is about rads. I was told I would have them, but I REALLY don’t want them if I can get away with it. As mx was on left side, it could increase risk of heart disease later, and I’m worried about my lungs. Plus it will be a logistical nightmare for me, as I will either have to organise patient transport every day for three weeks - and they’re not the most reliable. Or stay in the patient hotel from Monday to Friday every week, then go home for the weekend. Grrrrrrr, bloody cancer. Fec off cancer! The closer I get to chemo ending, the more I worry about it.

Ok, I’m going to bugger off now and leave you in peace. Take care everyone.

Love Kath xxxx

Jo, hope neuts come right soon, take care lovey.
Kath xx

Brill that you’ve got a date Linda. You’ll only be a cycle behind Tup and me. Sorry they’ve given you more work to do in the way of research but knowing you it’ll be commited to memory by this evening :wink:
Love the Gremlins poem Kath. I bet the techies under the stairs use it as a pin up!
The word missing thing is driving me mad. I feel such a fool staring at people and trying to make my mouth say something sensible. I’m sure, if they don’t know me they think I’m drunk!
I got my path reports too Dyane. It’s a good job too cos they’d got my boobs mixed up in one of them. I don’t think iit’s sad, Its a great coping mechanism. It’s taken me months to get everyone at my hospital onside but now I have they realise I won’t settle for anything less than upfront honesty which makes life a lot easier.
Hair has now gone it came out in gret big handfuls in th hower this morning. I still have to replace the shower plug trap which I had to remove to unblock it.
Who’s still missing? I’ve lost the plot a bit hope everyone’s feeling OK tonight.
Love to all
MMM

Kath I’ve just sent you a PM regarding your path report.

Just a quickie!
Hooray!!! Linda got a date at last! So happy for you after all that waiting and support you’ve been giving! Best of luck for Monday xxx
Kath, I’m absolutely loving the poems, please get a book of them published so I can buy it! xx
Jo, I have things crossed for you to not get an infection! xx
If anyone in hospital or suffering SEs, Ireally hope you are well soon xx
Geting ready for 3rd FEC on Friday as long as blood tests are ok. They are coming round so quick! How’s our leading lady, Karen doing? Hope you are not suffering too bad xx
Had a mini period at the weekend, probably explains hormonal melt down last week and why I was so busy crying at everything all weekend that I had no time to post!
Hugs to all
Elaine xx

Dyane, thanks for the lovely message, I answered it.
Mandy, missing word thing has been a problem for years now. OH thinks its the first sign of senility. Names are worst
Elaine, hope you begin to feel better soon. As for poems, why pay for them when you can get them free. You are all so supportive to me, feel free to print any - or all of them to keep.
Love Kath xx

Hi, my onc said that idc er/pr+ is the best to have . The most common, and responsive. So we`re onto a winner, 5 year tamoxifen here we come. x

What a cracker Kath, im grinning ear to ear. Thank you. x

FEC-T, FEC cycle 2, day 12
(Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals)

Evening Valentines,

This will be a bit of a long post …. seem to have kept it all in for a few days. Time to let it out! Apologies in advance for ramble.

So pleased to hear Linda that you have a date at last. I’m sure it’s something you would have wished not to be having, but maybe a relief now that it’s actually happening.

To Sandra and Jo – make sure you keep fighting those germs and keep out of hospital. On that front, I too was wondering what had happened to Alison (bottom still sore on Friday) and Jackie (last heard of on Friday in hospital). Are you both OK?

I had a bit of a meltdown last week. Wept buckets. Decided I had to do something about it so signed up for the BCC Peer Support service. They are a very lovely team who match you with someone who has been through BC, taking account of your own individual circumstances or particular concerns. So I have had my first chat with a lovely lady on Saturday, like me widowed young (-ish) a few months before diagnosis. Feeling very isolated, it was good to talk to someone who understands why. It’s not counselling, just a friendly, caring person on the end of a phone. We will talk again in a few days. So – if you feel you need someone other than family or friends to talk to – whatever your age, background or worries, it might be worth a try. I’ve certainly shed far fewer tears since.

Decided today to take back control of this part of my life by shaving what was left of the hair on my head. The matted mess on the pillow / in the shower / in my food etc. was getting to me in a very negative way. I had hoped that the Ladyshave purchased after ANC would do the trick. Useless, of course. So had to face the demons and use the clippers that I last used to cut my husband’s hair days before he became ill.

Been there, done that. It’s bloody cold and I look vaguely like my older brother. Soft cotton caps coming into their own. Shampoo relegated to back of cupboard. Hoover having a rest.

Some friends were “advising” me not to do it. I now think that this might have been more for their own benefit. I was distressed by the process of losing the hair – and p*ssed off by continually clearing up the fall-out and am now glad I did it. Just need the weather to warm up a bit. Had hoped to tart up the bandanas etc. with a selection of whacky earrings, but like Mandy found that first attempt (Xmas gift from niece) a couple of weeks ago left a scabby earlobe … so will proceed with caution once out of low immune period.

Now to chase up the copies of all my path reports, scan results etc…. My emails to the BCN have been ignored (you are passed on from their care here following surgery). I may be hair-less, but I still have my guts!

Love to all, take care,

Gill

Jo, do you you stay well through this one. How many injections did you have this time, i ve had five but no appointment for blood checks.Maybe my counts reacted quicker to the last lot. Have felt very fluey and weak in the legs today, slept for the last 3 hours. On day 7 but temp seems stable at 36.3. Fingers crossed for us.
Linda, at last, soon to be fully fledged. Waiting to give you back some of that support and wisdom. x
Sorry, missing so many names out but just do not have the energy. Big hugs to all and Absolute Minimum SE`s xxxx

Hi Valentines FEC2 day4 cancelled c/c
Third day on sofa,no energy,head feels funny.Hopefully back to normal weds as last time.
Angie Cornwall sounded wonderful,would have loved to have been there.I love Rick Stein too.xxx
Linda glad you getting out of the starting gate,join us in the race.xxx
Gill I am not suprised you having a meltdown,this is a long hard road we are on,we just got to get through each day.I look forward to going to bed now just so that I can get onto tomorrow.xxx
Kath thanks for the new poems they give us something else to think about.xxxx<3
Cant remember everything going on with you all at moment,so wishing you all well,and a visit from the sleep fairy.
Do hope tomorrow is better,my face is flushed again now,may have to take temp in a while.
Lots of love and hugs to all Chris xxxxx<3

Hi all,

A little more time now, so I can read through all the posts I missed earlier.

Mandy , I think you may have me mixed up with Jackie? I’ve not been in hospital this cycle (so far, though I currently have a neut count of 0.6…)

Sorry to hear about your friend Grannyp.

BlueRose , my oncologist did say that although it’s likely that fertility will be compromised, it is very hard to knock out 30 something year old ovaries completely, though as mine already had a battering a couple of years ago as I had to large ovarian cysts removed and the ovaries had to be “reconstructed” according to the surgeon I’m not holding out much hope.

You can’t swim with a PICC but I do bath with my hickman, just keep the entry site out of the water. I’m not sure I could put up with it for 14 months though, mine should be coming out once chemo finishes.

Sorry to hear you’ve been having such a tough time again Dyane. I’m also strongly ER+ (7/8), as I understand it that means it should be very responsive to Tamoxifen. i saw my path report, and my surgeon went through it with me, but I didn’t get a copy to bring home, I thought the temptation to google would be too strong.

Featherbird I had the single dose neulasta 24 hrs after chemo.

Gill good to hear the peer support service is helping you, being widowed and then being diagnosed within a few months is an awful lot to deal with, my heart goes out to you.

Hugs to all

Jo

x

Evening Valentines. FEC 2 day 24. FEC 3 tomorrow (subject to any last minute blood test issues). Spent most of the morning at the hospital. Saw the consultant (professor, no less!) to assess side effects. No mention of any problems following my liver ultrasound. Thank God. He checked my sore arm and said the vein was still ‘open’ but to make sure the nurse tomorrow uses another vein. He took me through what will happen with the next three lots of chemo (Tax) and potential Herceptin SEs. So next time I will spend two consecutive days at the hospital having Herceptin and then Tax. Apparently they will both be given very slowly so I will be at the hospital for hours. I will have Herceptin every three weeks for a year. SEs are lethargy, brittle nails and reduced cardiac function. For the latter, I’ll need regular heart scans. Not exactly the walk in the park I was hoping for! But the prof told me that Herceptin is very effective and improves life expectancy by 40%. No arguing with that.
Linda - so glad you have a date at long last!
Kath - keep 'em coming. I particularly enjoyed your gremlins poem.
Gill - lovely to hear you have support and that you are tackling things head on. You’re spot on about how some people’s advice seems to be for their benefit!
Tup - good for you managing your wig so well. I’m a bit jealous if I’m honest as I couln’t cope with a wig and am stuck with assorted hats/scarves.
Jo - stay well! Keeping my fingers crossed for you.
And positive thoughts to everyone else!
Angie xx

Evening Valentines,

Thank you all for your kind words. I have been researching my regime TCH and found our cancer network area protocol for my regime on the internet. It’s for HER2-positive patients where anthracycline is contra-indicated. (That’s the FEC regime) The only contra-indication I have is my age because I have no history of heart problems.

QUESTION - The protocol says I must have a heart scan (MUGA or ECHO) prior to initiating treatment. I haven’t had one of these. I had an ECG back in January but nothing else. I asked the Chemo Sister about it, and she told me I will have one before my second cycle. I didn’t argue, but am now a bit concerned I should be having one before I start. I have the Herceptin on Monday and the Tax and Carbo on Tuesday. Anyone else on Tax and Herceptin who didn’t have one first?

Linda xxx

Linda - delighted that you have a date at last! As you are now a seasoned veteran of the waiting room your portacath op will hopefully seem like just around the corner.
Jo/Tup - thanks for the info about Tamoxifen. My onc is going to give me this, or possibly Armidex (?) as I am older (I didn’t think I was old at 49, but there we have it).
Karen - Cornwall sounds lovely. I have a holiday cottage booked in Polzeath for May. Also brill that you were able to negotiate a small delay with your onc to accommodate your break as I may need to do the same rather than have to come home early.
Featherbird - hope you find some energy soon. Take it easy & rest.
Gill -that was a very brave and I’m sure hard thing to do. Are you anywhere near Whitstable? I have also just booked a week there for July and am planning my 50th birthday party there (I’m definitely in holiday mood this week! You just can’t beat the good old British seaside. Broadstairs… morellis ice cream parlour… Oh, roll on summer!)
I’m off for an early night so take care everyone.
Cx

Well Im off to bed… well try… reckon the sleep fairy will find me… tempted to take one of my zoplicone though xx have a good night ladies if you can x