sstarting chemo May 2015

[Kate2]

Morning Ladies,

How are we all doing?

I have my 4th FECT treatment today - first T session so feels like starting again! Fingers crossed the different side effects are not too bad I started my sterioids yesterday so back to 5am cuppa but sun is shining!

Hope everyone is doing okay and al least we are all around the mid way point!

Kate

x

[newey47]

thanks and well done to you.  I have seen the GP now, I made an appointment and said I was anxious that if I need drugs or something I need to get to him, not another GP, as soon as possible.  I have been told that should I have probs, to explain that I needed to see the GP urgently as breast cancer and chemo etc, and have been assured that I will be able to get to see a doc immediately.

I hope I dont have to use this facility, and I stay well enough to keep away from the doc lol

Val x

[kilimanjaro]

Hi Kate2

I just wanted to say thanks for wishing me well with my second round of chemo last Thursday.

This time round I wasn't so nervous and once again I had another Spanish nurse sitting with me giving me my FEC. I'm on FEC x 3 and then T x 3 after that.

Anyway, I chatted away to the nurse for the one and half hours it took, glancing at the women beside me, who was wearing the cold cap, which looked like a rugby scrum hat to me. Although I have lost my hair I just couldn't sit in hospital for another two and half hours with that on my head, hoping that it would work. I've got to be in and out of there in the shortest amount of time for my sanity.

At the end of the session, the nurse gave me the steroids and went through when I was to take them. I pulled out my glasses to read the instructions and she cracked up laughing because I had sat on them earlier on in the day and they were bent. In fact, neither of us could stop laughing. 

I hope all is going well for you. x

[kilimanjaro]

Hi Newey47,

Forgot to say .....am impressed with Annabandanaonline. Not expensive and fast service.x

[kilimanjaro]

Hi Newey47

I thought I'd reply to your posting concerning the service from my G.P.

I live in an area where there's a shared practice with another village, which is about 30 minutes drive from where I live.

During my pre op assessment, which was a matter of days before the operation,  I was told that my blood pressure was high. I think it was something like 154/101. Anyway, I was told to make an appointment with my doctor to have it checked again and to get the doctor to put me on a 24 hr blood pressure monitor. The next day I went to my local surgery ( let's call this surgery A) and was told by the receptionist that there was no one who could see me there that day but I could be seen at the other surgery ( surgery B) by the nurse. This was despite saying that I had been told to come to the surgery by the nurse at the hospital.  I knew that the doctor was still there because it was a walk -in clinic day, which must have just finished but rather than discuss my business with the receptionist - " Yes, but I have breast cancer and the operation is scheduled for next week'" -I said that I would drive to surgery B. Of course, by the time I arrived at surgery B my blood pressure had gone through the roof because I was so worked up.

Arriving at Surgery B my blood pressure was taken and  it was almost at boiling point and I was told to go back to Surgery A and tell the receptionist that I had to see the doctor. By the time I got back to Surgery A the doctor had left but the surgery was still open.  To cut a long story short, I  saw the doctor the next day and she took my blood pressure and ordered a 24 hr monitor for me, which I collected the following day. She said that she could and would have seen me the previous day when I first arrived because she was still there.

When I returned the blood pressure monitor after 24 hrs I left a letter for my doctor, politely requesting that I would be grateful  if she would inform the receptionists that should I phone, or drop by to see her, or indeed any of the other doctors if she was not around, that I was to be seen that day. 

In my letter I simply said that I was writing to her directly because trying to get through to her via the receptionists was rather like trying to get into Fort Knox. Anyway, the upshot of it all is that now  I am seen the same day without any fuss. 

The tip of writing to the doctor directly was one my mother-in law gave me and it has worked for me. I'd say that it is better to use  an amusing approach rather than it appearing to be a letter of complaint. x

[La-La]

Love Anabandana! Plys, we get a fiscount there ladies, type in 'Headstrong' when doing checkout. Goves you a discount 🙂

I need to get the clippers out now, looks so straggly, OK on too (I sat with frozen peas on my head all weekend!) but peas did not cover underneath at tge back and sides, so all underlayers gone!

Picked up my fabulous wig today (even my very stressed 11 year old son loves it!) so a lot happier. Also have some lively scarves and did the shopping today bold as brass in a lovely lilac patterned silk one. (Looks very Monte Carlo with big sunglasses and lippy on!)

Too hot today for the new wig!

[kilimanjaro]

Kate2 and Newey47,

Thanks for your tips about Ciara and annabandana. I've taken a look at the websites and I'm going to order some things.

As you say, hair grows back, so it isn't the end of the world.

I've just got back from seeing the oncologist and my blood results are fine, so cycle 2 here I come. It actually makes me laugh that the chemo is given to you in the "chemotherapy suite." It sounds like they are booking you into a room at The Dorchester Hotel for the afternoon! x

[Kate2]

Hi Kilmanjaro,

Like yourself I opted not to use the cold cap and my hair start to fall around days 14/15 of cycle 1 before I headed to the hairdressers  - it was tough at first but getting used to the new look and wig and quicker in the shower!! 

I also used Headscarves by Ciara - personal service was first class and loved the scarves!!

This is now day 6 of cycle 2 FECT and starting to feel more like myself again - good luck with your second chemo on Thursday!

Kate x

[newey47]

blimey thats good service from your gp, I havent even seen mine yet and was diagnosed Feb, MX March and now going through all my chemo.

With regards to scarves etc, try Annabandana online, they have some very nice headcoverings which are very reasonable.  I got two wigs for when I go out and want to look 'normal' and baseball caps for the garden which are so NOT me being a 56 year old nanny - it will be trainers next lol.

Dont worry about the hair, its a SE and will grow back very soon I am sure.  Must admit being bald was a novelty at first but I am bored with it now.  Made OH laugh in bed last night, he cuddled me and I had put face cream on him, and I said mind me hair lol.......made us laugh so much.

Take Care xxxx

[kilimanjaro]

Well, my hair has started to fall out. It's one thing knowing that it probably will and it's another thing when it actually does start to do so. My hair's short and curly and it was as if it went into shock over the weekend and it became really curly and today it's decided that it has had enough of being on my head.

I didn't use the cold cap because the oncologist told me that I would lose it because it is fine; if I had a thick mop of hair I guess it may have decided to hang around. I decided against the cold cap because it was/ is important to me that I am in and out of hospital on chemo days as soon as I can be. 

I guess I'll be pracitising how to make a headscarf. I think I'll buy some scarves from the charity shops because once this is all over I want to get rid of anything that reminds me of all of this and I rather like the scarves I already have and don't want to get rid of them.

My second chemo session is on Thursday so this morning I went to the doctor to get her to write out various prescriptions for me so I'm already for the second round. At least I just phone my local surgery and I'm always seen on the same day. x

[kilimanjaro]

La-La

Thanks for the info about Mindfulness. I'll download the app and also see if there are any courses in my area, 

I was in York at the weekend and went into the Shared Earth shop there. I bought a C.D. called "Zen - Relaxation for Mind, Body and Soul." Restful music. My husband looked at me as if I was mad, and said,

" Whatever makes you happy," I just smiled. x

[Did7855]

Found you, think I've sent friends request

PM on here working as well now

[borbie]

Search me on fb Lucy sadler with Troublsome Tits tshirt and I'll add you and transfer you that way x lucy

[Did7855]

Hi your essay was very helpful, nice to be able to compare with someone going through the same treatment.

Would appear my PM ability has not been actioned, but would like to join fb group.

Would appear, that I had the same drug regime as you as part from the fact that I could take 2 x metoclopramide up to 4 times a day and didn't get any levomepromazine, also had to self inject Filgrastim for 7 nights.

Ran out of the metoclopramide before nausea passed but GP prescribed some more thankfully

Was not given anything for acid and suffering horrendously so will need to mention last Oncology as appointment next Friday before next Chemo, will also ask about something to get more than 1-2 he's asleep at a time at night.

Will also try ocean breeze to drink as at present can't stand coffee, like orange Lucozade but forgot about the glucose factor and was busing for over 24 he's with no sleep after drinking 2 bottles last Wednesday ☺

[La-La]

DD, We are all now comparing meds as some having a terrible time, others almost zero SEs.. what were you given for sickness?

I was very lucky and had zero nausea, but had a LOAD of drugs (I was drug free after day 10):

Emend 125mg x1 an hour before chemo
Emend 80mg x1 day 2 and 3
Ondanestron x2 breakfast/bedtime for 3 days
Dexamethasane (anti sick steroids) x2 breakfast/lunch for 3 days (made my heart race but gave me energy!)
Levomepromazine (optional) 6mg at night (still have but haven't taken since day 10. Good for sleep
Also took co-codemol too, for portocath pain; (slept like a baby but totally constipated for 3 days! Ouch! Stopped co-codemol day 3!)
Metoclopramide 10mg optional up to 3 per day (I keep these on hand just in case now.)

ACID:
I was given Omeprazole 20mg antacid to take each morning as needed. I normally really suffer with heartburn but had none. If you do not have this ask for it.
I stopped taking it a week ago because it made me very 'windy' (son complained! Was awful!) and soft stools (ouch after constipation!!)

Sorry to ramble, but think it's important we compare notes on meds. I know I was very lucky. Maybe just my constitution, but I think it was my meds. (I suffered badly with morning sickness, so expected hell as my Onc said it would be similar. Maybe that's why I got heavy duty meds? But I took EVERYTHING I was given religiously (nurse advised me to!) and no regrets.

If you are suffering speak to your oncologist, they want to help. Don't struggle through.
And GP has a duty of care to issue whatever to overcome SEs.

PS: I drink Ocean Breeze Cranberry Raspberry squash all day! Lovely flavour, sweet (glucose for energy) and good for you (cranberry) Tried other stuff but this is really drinkable. Important to drink as much as poss to flush crap out of your system and ward of headaches etc.

Hope this essay helps!!!

[Did7855]

Hi Lucy, not sure how I go about enabling PM on my account? Would like to join fb group though

[borbie]

Trying to send you private message Did7855 but setting not enabled on your account, would you like to join our may fb group? Lucy

[Did7855]

Hi, I had my 1st FEC chemo treatment on 21st May, and survived the 1st week of extremev tiredness and nausea, but will definitely seek stronger meds at next oncology appointment. My main trouble is now suffering from chronic heartburn/indigestion at all times of the day at times pain between shoulder blades is horrendous, does anyone have any tips to ease symptoms??

[La-La]

Kilimanjaro

I just downloaded an app onto my iPhone - Mindfulness Daily... was enough to get me through Mum's hospitalisation and death last year, and I am using it now to great calming effect.

But speak to your BCN about what is available locally to you. Courses are available sometimes paid for by charities so you could do a complete course (8 week programme)

But I'd start with the app.. lovely and gentle and now just 2 deep clean breaths has an amazing calming effect. But the Full Body Scan is really good. Only about 15 mins, but makes you aware/acknowledge your emotions without letting them take over

Mindfulness based stress reduction (MBSR):

An 8 wkprogramme which teaches mindfulness meditation to help you cope better and be more at ease in your life. Many hospitals and clinics offer this type of meditation.

MBSR includes

• Sitting meditation (breath awareness, focused attention)
• Body scanning (awareness of sensations in the body)
• Mindful movement
• Walking meditation
• Insight meditation
• Looking at how our thoughts and emotions affect us, which can help us to respond more effectively to situations

[borbie]

Shirley, would you like to join our May starters closed Facebook group, if so send me your email address through a private message on here. Lucy x

[Darnmetoo]

Had my 2nd EC yesterday and feel a million times better than first time. (Ohh, hope I haven't spoken too soon). Definitely a case of more meds the merrier, and this from someone who is always reluctant to take even one paracetamol! 

Just let the medics know the problems and they'll do all they can for you.

I know exactly what you mean with indigestion problems Jackie!!!

Oh, hair 95% gone; tad chilly, wore a hat in bed and a lovely Anna bandana to hospital yesterday.

Stay strong, girls.

Shirley

x

[jackiek55]

Sorry to hear you're still suffering from se's Julie. I was the same last time. I definitely felt better after taking a sleeping tab for a couple of nights and this time round hopefully no more indigestion which I think was the worst for me. Onwards and upwards, at least we know the drugs are working! Feel better soon x

[jules_66]

Morning Jackie. So glad to hear you are feeling better this time round. you've given me hope as I am still really struggling with se's 8 days after round 1. Going to see GP today to get something to help me sleep and talk to them about the crashing heads and infected lumps that keep appearing on my face and in my hair. Expected a few rough days but never this. Julie xx

[jackiek55]

Morning ladies, day 3 here after 2nd session. Up early not much sleep but feeling much better than last time round. Think I've got the meds sorted! Drinking as much as possible to flush my system out, jug of squash by my side at all times lol. Hope everyone else is doing well Jackie xx

[kilimanjaro]

La La,

I'm interested in the Mindfulness training. I know I could just google it  but I just wondered if you could post a little more about it on here. Thanks. x

[borbie]

I have sent you both email invites now so you should be ok x

[jules_66]

Hi both, I had trouble too but will get Lucy on it, she is a whizz at sorting it out xx

[Kittysoftpaw]

Hi I'm having trouble accessing the face book group, can any one help, thank you xxxx

[WestLondonDi]

Thanks, Julie. I'd like to join the FB group, but at the moment I can't see how to send a PM on here. I think its because I'm new to the forum - something to do with moderation. I'll check again in a few days and hopefully personal messaging will have been activated! I am also glad to get the treatment started. Take care x

[jules_66]

Hi Jo, so pleased to hear rads going well for you, long may that continue. Yes the chemo was always going to be the toughest part but day at a time and sure will work through the grotty days. Hoping the worst is over this time, and can start to pick up and feel more human again. Lovely to hear from you, I wondered how you were getting on but yes its hard to keep tabs on everyone with us all having different treatment plans. Take care and catch up again soon xxxx

[Jobey68]

Hi Jules, good to hear from you, I lose track of people on here so easily and forget you will be posting on different threads, glad to hear you are feeling a bit brighter, Chemo was never going to be much fun I'm sure but your one down at least! I know I'm not going through anything compared to you but a week in to rads and all going well so far, just a slightly tingly boob! Take care love Jo cx

[jules_66]

Hi West London Di. This group is fantastic for support, advice and even a giggle or two. Several of us May starters belong to a closed FB group and you are welcome to join us. You need to pm Borbie on here and she will add you. Hope you are doing ok after first session, I'm just pleased to get this part of the journey finally underway. Take care and hope to see you on FB. Julie xx

[WestLondonDi]

Hello everyone. I started my first cycle of FEC (5 more to go) on Friday 15th May. Just wanted to join this group as knowing so many others are going through the same thing is enormously supportive. I haven't felt too bad so far - some mild nausea and tiredness, although did have a pretty wiped out day on day 7. Everyone tells me to 'listen to by body' and rest when I need to, but feeling feeble is frustrating. Wishing us all plenty of strength over the coming months.

[jules_66]

I'm on FEC hoping for only 3 cycles but got to see how things go. Will be nice if the worst is over for this cycle, very foggy head still but nausea def easier so far today 🙂 Have reduced med but not off them completely yet. Have kept a comprehensive list of what I've taken and when as much for me to know when I took something but also for hospital next time. Feel shattered now so going to give in for an hours nap!! Take care xx

[sod6162]

Hi Julie, glad you're better this morning...which chemo drug are you on? Looking back at earlier posts, it seems most of the ladies had worst days early after first round...I'm on Docetaxol and mine were day 5-12. Yesterday was first totally med free day, even painkillers.  I think it's truly individual about SEs, but there is at least some commonality with regards to the type of drug.  Remember to keep pain/meds  diary.  See you on fb xx

[jules_66]

Hi ladies. Well yday was a grim day with relentless nausea and feeling in a state of fogginess thanks to the concoction of pills. Hoping that was the worst one of this cycle and def asking for the stronger anti nausea drug next time. Two nurses thought I should have it from outset given my history with sickness but Oncologist thought it best to see how things went!  Managed to clean the house but then had to sleep for an hour but tiredness might be down to the broken nights I'm having. Not so nauseous this am (long may that cinyinue) but tummy gluggy , bad head and very sore mouth so guess it's still working through system. Hair also very itchy so reckon an earlier than expected trip to hairdressers could be on cards, just glad I got hats and wigs sorted! Hoping for another sunny day as that always helps. Hope everyone else is doing ok and enjoying the weekend xxx

[jackiek55]

Glad to hear you've had your first and don't feel too bad. Keep up the good work drinking as much as possible. It really helps. Eating little and often helped me too xx

[jules_66]

Morning ladies. Just to report back on my first session yday. Apart from a nasty side effect from the steroid injection which meant the chemo drugs glad to be put in more slowly all went well. Felt pretty grot thanks to reaction but my chemo nurse was lovely and after about an hour I started feeling better. Have had waves of nausea and a headache but trying to drink lots to flush it all through. Not even wanted to look at food but then that's not unusual for me. Am taking anti sickness pills religiously and hoping things get no worse. Had a pretty good night, 4 hours solid sleep (that's good for me normally) and don't feel too bad this am. Just glad to think that's one down. I have found ginger ale (slightly flat) and pineapple cube sweets both good so far. Have a good day all xxx

[borbie]

Hello May girls x I have set up a closed facebook group for us May starters - if you would like to join us send me your email address by private message on here and i'll add you in, Lucy x

[Mrs_Merc]

Hi All,

Just wanted to say good luck to everyone starting chemo this month - my thoughts are with you.

Hugs for all,

Pen x

[sentangelo]

Where are the like buttons here? ))) I totally agree with you, guys.

[La-La]

Wise indeed.

I kinda hate the 'kicking cancer's arse' ads too, because on a bad day I don't feel terribly warrior-like at all, and makes me feel a bit of a failure if I feel sorry for myself.
(Allow yourselves to feel whatever you are feeling ladies.. Mindfulness training taught me that)

I messaged a lady who had posted something at Christmas (exact same situation as me, about to have double mast and recon)
What was THE best thing was that she messaged me saying 'God that seems so long ago now'

THAT is where I want to be.

This time next year this will all hopefully be a dim memory ladies.

Roll on 2016!!

One cycle at a time.

[kilimanjaro]

Good afternoon everyone. I thought I'd join this thread because I had my first chemo session last Thursday. I was extremely nervous but told myself to relax and imagined myself on a beach and after awhile I started chatting to the Spanish nurse about Barcelona. 

I've spent several hours reading postings on this site and I went armed with iced lollies, ginger biscuits and boiled sweets. Sucking the iced lollies really helped and I did not end up with a metallic taste in my mouth. Long may that continue. The moment treatment  finished I started drinking water and I've continued with that ever since. I found that I don't get heartburn if I drink through a straw.

So far I haven't been sick and I've not used the emergency sickness tablets I was given. I'm sure that the anti sickness tablets are what makes you constipated and I've suffered with that, as I did when I took codeine after my nodes clearance. As far as the constipation goes, well, I've just been reading various articles about squatting when going to the toilet. Yes, you read that correctly. 

Someone told me that the treatment will pass quickly and the way to see the whole thing is cross off the sessions, rather than cross off days, or weeks. It sounds like good advice but with another 5 sessions to go the end of chemo seems such a long way ahead. 

After the chemo I have to have radiotherapy and then take tablets.

When I was first diagnosed I read a lot about breast cancer and there was one article that sticks in my mind by the comedian, Jennifer Saunders. She said that she was against the tabloid headline, "Battling Cancer," and saw the whole thing as " going through a process of treatment."  Wise words, as far as I am concerned.

[jky03]

Hi ladies ...can i join you for the ride In the lovely month of May, and hope youre all habving a comfortable day.

Investigated 23rd of April and diagnosed 30th April, now started my first lot of FEC yesterday...having x3 cycles then have docetaxel + herceptin x3 after...all neoadjuvant for stage 2 IDC,HER2 + ER +...prior to surgery and Radiotherapy.

Well after slight nausea and tingly hands and feet last night, i took my ondansetron and slept like a baby...awoke briefly at 2am and wanted to clean the oven...steroid effects..but soon back off again.

Today pleasantly surprised as eaten ok, been for walk thru village then had picnic lunch in park with hubby. A bit of light housework and now feet up on sofa....im not kidding myself tho, i know i wont be as lucky with SE throughout.

Havent any lines in as yet but gonna see how i go...was a bit sore initially via cannula but eased with warmer to arm.

Anyway, hope to contribute and gain info from you guys as we go on, have read this forum frequently and loving the support and valuable advice, but due to IT glitches my posts havent been displayed till now.

take care all.x

[sentangelo]

Hi Ladies, well, no sleep second time around even with the sleeping pills. The dexamethasone is really strong, keeps nausea away but deprives any sleep at all. The Neulasta shot itself is fine, it's the pain I had for a couple of days after it last time. But it is of course possible that this time it's different.

Kate, good luck next week! I'm very sure your good week will be good. If it is ok now, it will only get better until the next infusion. Try to enjoy as many things as you can especially good food 🙂

La-La, well done one your shot! wow. I also did the shots of different types for my self for several weeks because I was going through fertility preservation treatment. It was a bit scary at the beginning but later on I became a real pro and could do that with my eyes shut.

Let this all treatment bring us a lot of health and long years ahead. xxx. Julia

[La-La]

I did my own shot.. (Neighbour is a DN but was out when I needed the shot doing so no choice!)
Don't worry ladies, does not hurt at all if you grab your spare tyre firmly! (Sorry, one time having a jelly belly helps 😉
The needle is super fine.
Goes in really easy, don't fret.

[Kate2]

Hi Julia, Well done on your second session - another one over!!  I had the Neulasta shot after first one and it was fine so fingers crossed for you! Hope you have a good night. My second session is next week so hoping my good week is "good"!! xx

[sentangelo]

Hi ladies! Thanks so much for your responses! I really hope it goes much better for all of us in the future. I'm back home from the second session. Yey!!! My chemo brain is all around me, no concentration whatsoever. But luckily no nausea. Tomorrow I'm having the neulasta shot, that's gonna be painful but doable. No sleep still. But tonight I'm going to take a sleeping pill to try and manage it. My hair started to fall out day 13 after the first chemo so I just shaved it off. It's not yet gone completely, I look like a leopard ))) but every day I lose more and more of it. My lady garden has gone completely, which is handy as I may save up on waxing now ). In any case I hope I can keep my taste and smell for a couple of more days as then it will be gone and everything will taste like paper for a while. But still 1/3 done!!!! Yey!!! Even side effects font matter anymore 🙂