Chemo JAN 2017

[Sue H-S]

Hi Robin J and Mooney

here is to hoping your first session will go well.

Tip re wigs - wash them with the appropriate shampoo, before you start to wear them. It softens them and they will look more natural.

You may also try and wear them out and about - with your real hair underneath - it helps to give you confidence, when the time comes that you start chosing to wear them, as you hair is going/gone.

Hugs

Sue xx

[RobinJ]

That sounds like a good plan, Mooney.  I have my wig ready to go too!  I shall think of you on 3rd when I am having my blood test done, ready for 4th.  To be honest, I just want to get on with it.  You probably feel the same.  Take care.  R

[Mooney]

Hi Robin J
I am starting on the 3rd Jan. So maybe we can hook up and support each other. I am on FEC-T. I have decided not to cold cap and have bought a wig already! One of those things, the hairdresser can always make it look better than I can lolxx
Love Mooneyx. X

[Mooney]

Hi Truey Sue and Blueash
Thanks for confirmation about the Clarityn, at least I hadn't dreamt it! I will check with my chemo team.
Hope all going well with you all, have a good New Year. I will let you know how my Hirst session goes next week. You have all been very reassuring so hope the nerves are reduced by your comments.
Love Mooneyx

[Wtp2016]

Hi guys,
Just wanted to give you a quick update which I hope will be reassuring although I know that chemo side effects vary from person to person.
I'm now onto day 5 and the worst I've had has been tiredness and what has felt like the start of a cold (shivery last night when trying to get to sleep) - which very possibly could just be a cold given the time of year and having spent Xmas with lots of children who all had colds 🙂
I've been napping on and off today whilst catching up with Eastenders. I'm eating a lot as seem hungry most of the time which could just be me (I do like my food!) but was warned to watch it a bit as the carb cravings can pile on the pounds. I'll start watching it in the new year - for now, one day at a time!
Anyway, just wanted to let you know in the hope that it might help. I'm still taking anti-sickness drugs 3 times a day. The docs said prevention was better than cure - I.e. Don't wait until you feel sick to take them!
Good luck guys - we can do this!!! Xxx

[RobinJ]

Thanks Sue.  I forgot to click to get alerts so will do that now!  Hugs, R x

[Sue H-S]

Hi RobinJ

Welcome - yes, you have come to the January 2017 starters thread. 

I think it is aways good to keep being involved in a couple of threads, to get varying opinions. Also sometimes questions come up on one, but not on the other.

You may want to scroll down a bit on this thread - there are some useful links for prearation, unless you have already explored them. 

HOping all will be well and wishing you very few side effects.

Hugs

Sue

[RobinJ]

Is this the thread for January 2017 starters?  I was meant to be starting Dec 14th but got postponed and I'm starting January 4th.  I've been reading the December starters thread every day and finding it very helpful but I probably 'belong' on this one!  Although I'll probably keep reading both.

[blueash]

Yes claritin does help with the Tax, I found this ages ago and put it up every so often:

http://myangrycancer.blogspot.co.uk/2013/02/claritin-is-worth-its-weight-in-gold.html

[Truey]

Hi Mooney,

I am on my second T cycle and did take antihistamines. I asked my chemo team and they said there was no restriction as these 2nd generation antihistamines have few side effects - but of course check with your team. There are some clinical trials with loratidine just ending, so clearly it has possibilities.

I take antihistamines for hay fever and I find cetirizine better than loratidine for me so I took that. I started the 

day after chemo because sometimes they give you an infusion of antihistamines before the T. This varies locally, so you could ask about that. I continued until a couple of days after the Filgrastim injections ended. Can't say if it helped because I don't know how I would have felt without them!

The worst I have found with the T is fatigue and apathy - I'm pretty useless! Also, taste disturbance is far worse than with FEC and did not improve before I got zapped again which is a bit depressing. 

On on my first T cycle I did have bad bone pain from the injections. Rather than up the type of painkillers, my onc decided to reduce the number of injections and this has done the trick. I just hope my cells are holding up.....

The actual T infusion is faster than FEC and you get less extra fluids infused so less trips to the loo at the unit, dragging your stand. As Sue H-S says though you do need to drink as much as possible once back home to flush through.

Hope this has been some help. Good luck with your T.

Sue O X

[Sue H-S]

Hi again Mooney,

yes, I have read a lot about it, too - and it does seem to help many. Claritin is an antihistamine, which contains the active ingredient of Loratadine. So you could also get a lower cost generic one with this active ingredient from Tesco, for example. Please let your chemo team know, when the time comes, that you are going to take it. There may be restrictions of when to take it on the relevant treatment day.

For those, where Loratadine does not seem to have an effect, you may wish to try an antihistamine, which contains Cetirizine as an active ingredient instead. I hope it will help you, too - as and when you get to the T part of your chemo.

Perhaps someone else, who has gone through the T part already, might be able to post their tips and advice on here to help you all a little more. I did not have the T, hence cannot share that experience.

Hugs

Sue x 

[Mooney]

Morning all
Thanks Sue and Blueash for the very helpful advice. Hope all is well with you both, good to catch up with you again Sue. Always enjoy a little therapeutic shopping, though not sure I wanted such an excuse to go out and shop! I am going to try and practice the breathing. Tried something similar during insertion of my portocath and diastolic still went up to 110! Hopefully practice and happy place may work. Another question about Taxol and joint pain. I have heard Clarityn may help sure I read it on forum. Does anyone know anything about it. ? Love and hugs Mooneyxx

[blueash]

Hi Mooney,

Your anxiety is due to fear and there really is nothing to be afraid of. Sue has outlined the procedure and your first concern is really going to be the side effects. Some people suffer more than others but please make sure you have a supply of things for upset tummy, heartburn etc. Those things are dreadful if you have no relief but soon gone if you do!

I can give you a couple of pointers regarding breathing and stress relief. Sit quietly and turn your attention to your breathing. Then without trying to control it, just observe it and pay particular attention to your in breath. Try to establish a count for a comfortable in-breath - it does not matter in the slightest what your count is. Just observe your in breath and your count until it is regular, say a count of 6 is your "normal".

When you are comfortable with watching your in breath and having established your personal "normal" turn your attention to your out breath. Whatever in breath count you have found, I want you to make the out breath a second or two longer.

Simple as that - it is is guided meditation (an elementary one) but it gives your mind something to do and while it is doing that it is not able to worry you!

You breathing will slow down, your  heart rate will slow down and then your mind will follow - it has to it has no choice and the end result is relaxation for you.

Do that for about 5 minutes twice a day.

[Sue H-S]

Hi Mooney,

Happy Christmas!

Anxiety is a hard thing to combat and we all may have different ways to manage it, if we can.

Here is a link, which may be of some help

http://www.nhs.uk/Conditions/stress-anxiety-depression/Pages/overcoming-fears.aspx

It is good to know you have already had your port installed - it has time to settle and will make things much easier on your veins.

The actual administration of the chemo tends to be quite trouble free and uneventful. I'll talk you through it - although, I have to say, it can vary from authority to authority. Please also let your chemo nurses know that you tend to be very anxious, so they can support you accordingly. 

The nurses in the chemo unit are usually very friendly, helpful and compassionate. They do everything they can to make your treatment as comfortable as possible. It is likely that you may be in the unit for 90 minutes or 2 hours. Try and drink 2 litres of water before your treatment - it will make things easier on your body.

The chairs are nice and comfy and are adjustable, too - so you can spend the time 'chilling' out. Perhaps take some music with you, which you can listen to through some headphones, a puzzle book or novel to read. It may help to distract your mind.

You are likely to be given a strong antisickness drug and then 'hooked up' with saline fluid being given to you - again it is to hydrate your body and 'open' up your veins. then an IV steroid tends to be administered. This sometimes is done by hand with the nurse accessing your port or, in other cases, a bag with it is hooked up to you. Some women have the experience of prickling in their nether regions, when this happens. It passes quite quickly. Not really unpleasant, but very werid, lol. These steroids tend to be given to avoid a strong allergic reaction to the chemo drugs. Then, the chemo drugs will be administered - either by a nurse in person, sitting with you and chatting, whilst she/he injects the drug into the line of your port. Sometimes additional saline is administered with them to lessen the effect on the veins. It does not hurt at all. In some areas they will be administered via a drip. Again, it does not hurt. You may feel the need to go to the toilet, not because of the drugs, but because of the saline and water you have drunk previously. Just let a nurse know - you can take your drip stand with you - so there should be no issues at all.

Once the chemo drugs have been administered they may give you some more saline. And then all is done. You are likely to get a bag of accompanying medications, which will probably be some steroids in tablet form, some anti sickness tablets. Please read the accompanying leaflets and take religiously as prescribed.

When you leave the unit you may have a fuzzy feeling in you head or slightly achey,mussy - like a bad hangover. That should pass, once you have had a good nights sleep.  

Please remember to drink your 2 litres of fluids every day, especially the first 4 days post chemo treatment. It will help to flush the drugs through and ensure they do not have a strong adverse effect on your liver, kidneys and urinary tract. 

The actual administration of chemo tends to be a 'non event' considering our anxiety and fears.

                                     

Hugs

Sue xx

[Mooney]

Good morning lovely ladies. I hope you all had as good a Christmas as possible. I am due to start Chemo on 3rd January. FEC X3 TX3. Had my portocath (under LA and the Consultant was observing and teaching the Registrar-note to surgeons although us patients are buried under acres of blue sterile drapes we can still hear!) fitted on 23rd. That was an experience, black and blue, and sore especially with boisterous grandchildren around, but they are a joy. Is anyone starting at the beginning of January. Just want to keep in touch to share and support each. Already learnt a lot from these threads thanks to Sue for the excellant hints. Am nervous and apprehensive about the chemo. Has anyone any hints on combating anxiety and nerves.Before both surgeries I was tachycardic and my BP was very high through anxiety. I really want to avoid that if I can!!

[Sue H-S]

Hi all,

so great star, that you have already started the January thread - so many are likely to start.

Here are some tips and links for you and those who will be joining the thread in preparation for chemo.

It covers all sorts of areas - and is general, rather than specific to individual chemo treatments.

I hope it is of some help...

Please do not be too worried - you will all get through this. For some it may be harder than others, as side effects tend to differ from person to person, even if on the same regime. Sharing your experiences will help others, even if you never see them posting. It is also a great place to share your frustrations, ask questions, laugh, cry, rant and rave. I finished my chemotherapy and radiotherapy on 26th October 2016 and shall be 'lurking' to support you , where it may be relevant. 

Any side effects you do get please note them down for your treatment team. If they become too challenging and you advise them accordingly, they usually tend to adjust the accomanying medication to make your journey easier. Most side effects experienced in the first cycle are likely to be the same throughout, as long as you are on the same regime.

Here are some helpful links for you to prepare and support you.

Chemo preparation - 

https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Preparation-for-Chemo/m-p/10...

If you do not have a PICC or similar port installed and you are on FEC throughout - you may wish to ask for one to be installed. FEC is quite tough on your veins. This thread may be of help though for all of you -  https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U10363...

And this one covers everything from food to make up and wigs - you may have to explore in more depth to find something specific you are looking for - 

https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Chemotherapy-Tips-and-Tricks...

[star]

Well done Wtp! Great news- you did really well -  I'm so greatful for all the info from all these wonderful strong ladies

warmest love Star xxxm

[star]

Hi Blueash

Thats great info I will definitely follow what you did . Wonderful that you were able to keep your hair

hope I'm as lucky as you 😊Wishing you a lovely Christmas love Star x 

[star]

Hi Kim

thank you for such a lovely message. It's my first time on this site & speaking to wonderful ladies like you gives me confidence for my future & not to feel so alone.So pleased your feeling great.

Wishing you a wonderful Christmas love Star xx

[blueash]

I forgot to say that it does shed - and you might think you are losing it but don't worry. In fact it still sheds for a few weeks after chemo has finished before it starts to thicken up.

Your hair will look shabby because you cannot use anything on it so you always look like you have just got out of the shower. No mousse, no straightners, no spray, nothing. That is important beacuse the roots are very fragile and the more you pull on them or mess about with your hair the more  you lose. I left mine a month before I started to treat it as normal. Plus I started using Boots Hair, Skin and Nails capsules as soon as my chemo was over.

[Wtp2016]

Thanks so much everyone for the advice and kind words!
I went in for round one yesterday and one of the ladies who was finishing yesterday had managed to keep all her hair too (well, most of it) through cold cap so I thought I might as well try!
The first 10 mins were the def the worst - esp when the nurse said it was going to get colder! But after a while I forgot it to be honest, watched something mind numbing (haha) on the tv and found the most irritating thing was the very tight chip strap - it dug into my through a bit which made me feel a bit sick.
Nurse said to bring: conditioner (they put it on your head to prevent the cap freezing on) - and an aliceband as it protects your forehead and eyes from getting too cold (brain freeze!).
They put a rolled up towel around my neck to support it as the hat is heavy. It needs to be on for at least 3 hours (I had the Paxman hat) so does mean the whole session is longer as only took an hour to get the drugs in.
I'm actually having EC-T and not FEC (they've dropped the F part). I had a port fitted in the morning under local anaesthetic (very easy op, nothing to be scared of but if they offer a pill to help "take the edge off" - go for it!). Then first chemo a couple of hours later.
We're private as it is covered by my husbands work so I'm not sure how many of the anti sickness drugs are the same vs NHS but I've felt absolutely fine!
I think (and might have this wrong) that you get extra anti-sickness from day one on private but I could easily have that wrong.
They told me the steroids might keep me energictic for the first few days then tiredness might hit.
Passed out asleep by 9:30pm but I think that was just a result of a big day 🙂
So I'm really enjoying every minute before any unwanted side effects but so far so good and glad to finally be doing something to zap these cells!!
Good luck Star - let us know how it goes!
Kim - thanks for your encouraging message and fantastic to be a year on and feeling like yourself again - it must have been a tough year and awesome to come out fit and healthy! 🙂
Blueash - great news about your hair - thanks for the advice on cold cap and the toppers! Well done on getting through it - must have been such a rollercoaster!
Us women are so strong!!
Happy Xmas xxxx

[blueash]

I used the cold cap and kept a full head of hair. This is me

after all my chemo. I had a regime call TCH.  Everyone says mine is the best they have seen.

You must take care of it as follows.

Limited washing - once a week. I did not use any special shampoo just what I already had.

No hair dryer, heated rollers etc.

You can only wash it it cool water, rinse and apply conditioner then comb with a wide tooth comb. Pat it dry, no rubbing. You cannot go under a shower.

The cold cap can be spiteful so take a Neurofen an hour before you get it put on.

My hair has thinned all through but I don't need a wig. I do use "toppers" now if I am going anywhere special see here:

http://www.internetwigs.com/toppers/easipart-xl-hd-12-topper.html

It is not a wig - more like a wide clip in hair extention.

Anything else just ask xxx

[star]

Hi
Thinking of you lots of good luck with your chemo - stay positive - sometimes it's better not to have so much thinking time - I have thick shoulder length hair - I was told just to take layers if you get cold - please let me know if you are able to would love to hear from you at any time 💐💐 star

[Kim555pink]

Hi Star and Wtp. I'm from the Jan 2016 starters - so tjis time last year I was on this forum like you desperately trying to grasp any bits of information to help me through it all!! And one year later I can honestly say, the support and advice I got in here was the best ever and definitely helped me get through it all. Today I'm sat having breakfast in bed through choice feeling fit and healthy with a full head of newly styled dyed hair, feeling like my old self 🙂
I didn't cold cap - my hair was pretty rubbish before anyway and I can't bear the cold!! But I do know those who did felt it was so worth it and kept most of their hair. I think the biggest advantage was at the end when it starts to grow back again, the transition back to normality is quicker. I'm sure someone will be along to advise you but if not - drop into our thread and ask the question - we are still in touch on here with each other from time to time 😊
I want to wish you both the very best of luck - it's tough, but you'll be amazed at how strong you can actually be and what you can put up with!
I'm always full of advise, but I'd say drink as much water as you can and go for short daily walks whenever you feel up to it.
I hope Christmas is peaceful and as stress free as possible!
Love from Kim xxx

[Wtp2016]

Hi Star,
I'm afraid I can't help with your question but am due to start my chemo tomorrow so just wanted to say hi and that I'm here if you need a chat at any time 🙂
I've not had my mastectomy yet, I was meant to be having one next wk but the docs were worried and decided to get me in ASAP so having had much time to register...
I'm having FEC-T which I think is different to you (I'm HER2 neg) but will also try the cold cap so will let you know how I get on. I've got long thick hair at the mo and haven't had time to get it cut short as only found out about the chemo on Weds! 😱 Have you cut yours yet? No idea what to take with me tomorrow either...
Good luck and I'll be thinking of you in Jan! Xxx

[star]

Hi
I'm starting my 12 sessions chemo Taxol & herceptin after a double MX - onc advised this chemo is kinder & will try & cool cap - has anyone done this please & kept their hair?
Thank you star xx