Tamoxigang New Year, New Thread, *46*

[BetsyBoop]

Hands round a for everyone.

x-post with wren that reminded me that I've actually had free brews from Macmillan whilst waiting for my onc appointments, as they run the tea bar. I dare say I would have coped without though

re Macmillan - their leaflets about chemo etc are quite good. We have a Maggie's Centre in Edinburgh which is supposed to be great.

I'm still here, in limbo land.

Goodness: hope you get results soon, whatever they are I think it's better to know.

Betsy: god to get clearance to go back to work .... I think!

I'm just enjoying my last week before surgery. Off to the gym to work on my pecs!

Lovely Tamoxigang, I'm starting chemo (FEC-T) on Thursday, and i know that lots of you have been through this. Finding it hard to get my head around it, and know I'll just have to go through it to find out what it's like for me, BUT does anyone have any key tips: the things you wish you'd known beforehand? Also I cannot think through whether to chop my hair off this week (mid length bob at present) or to wait. The cold cap is on offer, and I'll probably try it out, but not convinced I'll stick with it. Any advice would be really welcome!

Wren, yes. Make sure your team know if you've had previous problems with nausea - pregnancy, travelsickness etc. They can be ready with stronger potions, just in case.
Take ginger supplements for the three days before chemo. It reduces nausea in many people. I also used Sea Band wristbands, which really did seem to work a bit.
Stock up on ginger beer or similar - sipping a bit of that seems to be useful for many people.
Sip iced water during chemo - seems to stop it attacking the mouth so much.
Drink drink drink!! Drink lots of fluids any time you're able to.
Take magazines, books and a really sensible down-to-earth hospital-proof friend or relative.
Expect it to take bloomin' ages.
Don't suffer. Side effects are there to be countered with potions etc.
Take lactoferrin at the same time as chemotherapy. It boosts the body's gut bacteria (no, it's not 'woo', it's science), and they in turn signal maximum anti-cancer settings to the body. Fascinating the scientists. And curcumin. And vitamin/mineral supplements.
Those might be a starting point.

Wren I had fec t and like you say everyone is different but I'll try and help. With the hair I had mine cut from long to a bob and was glad I did as when it did start to come out it was a little less traumatic. Without being doom and gloom do be prepared for the cold cap not to work, I think it worked partially for me but I still ended up wearing a wig for 5 months. You might be one of the lucky ones but be prepared with a wig of scarves in case. I had 2 paracetamol an hour before the cold cap and hat a hot drink while it was on which helped.
The taste bud thing is horrid, through trial and error you will find what is best for you to eat and drink but I found fresh pineapple, anything ginger, and strong tastes like marmite were best. It does pass though. At the beginning I found the first week I felt rough, the second week a bit better and the third week I was fine so plan some nice things in that third week.
Please ask if there's anything in particular you want to know.

Kitkat I did see no going back and yes they actually went ! Surprised she couldn't find a midwife job in Scotland though !

Betsy and kitkat your hair is growing well and can't believe you're both back at work next week that's brilliant :)

Foo foo hope you enjoyed the gym

Having been told I must have chemo within the next two weeks a week ago I still don't have a date. I've got a couple of chemo questions too. Why is it good to take lactoferrin to increase your gut bacteria? I've been told that I am at high risk of self infecting because of the bacteria that is usually present in the gut.

Is it really true that the degree of nausea in chemo will be similar to how you suffered with morning sickness? I really hope that isn't true. I suffered from hyperemeisis (sp?) and was sick several times a day from 6 weeks to the day I gave birth.

I don't know about the lactoferrin pickle but yes they do say that if you had morning sickness or get travel sick you are more likely to feel sick on chemo. If you tell them they should give you the stronger drugs from the outset. Obviously you might be the exception, fingers crossed. I hope you get a date soon waiting is awful

pickle - in my limited experience the sickness thing does seem to hold true. I didn't have hyperemesis but did have bad ms and got sick on fec. I suppose it's better than pregnancy as you can have all the drugs without worrying about the baby!

pickle - I can't remember where I found this now, so it's a cut & paste from my blog where I wrote about my experiences... (I had ms too, but not as bad as yours!)

" Certain factors may make you more vulnerable to treatment-related nausea and vomiting. You may be more vulnerable if one or more of the following apply to you:
You're a woman.
You're younger than 50.
You have a history of motion sickness.
You experienced morning sickness during pregnancy.
You are prone to vomiting when you're sick.
You have a history of drinking little or no alcohol."

(I ticked every one bar the last one, and I'm a very light weight drinker these days!)

Make your onc aware and ask for Emend as a starter-for-10 I'd say.

wren - ditto what malt said - and if the above applies to you ask for Emend too! I ended up with a range of anti-e's to stop me being sick, although I was still very nauseous for the first week on FEC. The taste bud thing is a pain, even water tasted odd, but I did become quite fond of good old fashioned lucozade (memories of childhood poorliness!)

Wren, stock up on some hard sweets of your choice, these are great for sucking on when you get bad taste in your mouth. I didn't figure out that until a few cycles in.

I second Malt on planning some nice things for week 3. (You didn't mention the interval between chemo, is it every 3 weeks, which is very common). I always meet friends on week 3, usually have about 2 coffee morning/lunch/dinner planned. This is key to my sanity. I love having these to look forward to. To keep having fun is a must. A good laugh and a giggle is great medicine.

I've attended concerts, theatre, etc during chemo. I walk with friends (on fine days only). I do try stay out of crowds during week do, but when the DDs have something on , I go regardless of the state of my immune system. I didn't pick up anything at any of these events. Though, I recommend staying away from sick people if you can at all.

Also re nausea, take the pills as requested, even if you don't feel nauseous. Must easier to stay on top of it than make it go away once you get it, especially on the first cycle. You may be lucky, and not have much nausea. But if you are unlucky, there are loads of medication to deal with it, just let your chemo nurses know immediately.

Actually, there is medication available to handle most if not all side effects. Constipation,sore mouth, sore eyes, sleeping tablets... Don't suffer any SE in silence, ask for help. Those were my SE, everybody is different...

Be aware that steroids make it difficult to sleep. Take them as early as possible in the day. And if sleep is a problem, ask for sleeping tablets. I only gave it to sleeping tablets on cycle 5. The difference between getting enough sleep and not is unbelievable. I was stupid to wait so long. Often there are just a few days per cycle when you need them.

Loads of water. As much as you can drink really. I down quite a few pint glasses a day in the week after chemo.

Sky plus or download some decent tv/films for the days you don't have a lot of energy. I was lucky, didn't have too many of these days.

Consider getting a cleaner, if you don't have one already.

Batch cook when possible. Stock the freezer for any low energy days.

Let key friends know you are starting chemo. Accept their help in making life easier, or having fun days outs.

Keep a diary of how you feel and any SE you are feeling. Usually each cycle will be similar, and it will help you predict how you will feel in coming cycles (though SE for FEC will be different than for Tax.)

Last of all, it is very doable. You just plough through it, and will be out the other end in a matter of several months.

Good luck!! And let us know how you get on.

Wren: I would suggest wait and see how you get on with chemo. It varies.
I didn't have many problems, just took standard anti nausea, and def get some laxatives.
I didn't get scarves etc as felt it was tempting fate. Cold capped for all but last session, and my hair fell out 2 weeks after I had finished chemo.
Be prepared to be there most of the day.
Take your own cosy blanket if you do cold cap.

I have my first appointment with Oncologist on Wednesday. Can anyone tell me what to expect? I like Wren will also be starting chemo in the next week or two so lots of your comments have been noted.

Goodness you are an amazing lady and whatever the outcome I'm sure you will get through it. x

Mummywheel I second everything everyone's said about getting through chemo. I think the key thing for me was not being 'brave', but getting all the anti-sickness meds I could, and taking them even if I was feeling ok. I ended up pretty much permanently on Domperidone for at least a week after each chemo, and this, as well as Emend and Lorazipam kept the nausea at bay most of the time. I say most of the time as I would have the odd day when the nausea appeared out of nowhere and knocked me right down, in spite of having felt ok the day before.

In terms of hair, I had mine cut short the day before chemo started and wore the cold cap for the first two sessions. In spite of this, my hair started coming out in massive handfuls about 18 days after my first chemo (I was having chemo 14 days apart), so I took the decision then to just shave it off. I found the cold cap doable at first, but then as I had quite a lot of nausea, pretty soon the thought of it going on my head made me feel sick. Give it a try, everyone's different.

So I am now 6 days post my last chemo. I have spent some of the last few days feeling very flat - I'm putting that down to just feeling crappy and a bit sorry for myself. I feel like I've been boiled. I can't feel the end of my fingers or toes, and I'm getting hot flushes throughout the night which wake me up every half an hour, and even getting some during the day. I am hoping these very annoying SEs will wear off over the next few months (please someone reassure me they will). My state of mind is slowly improving day by day now thank goodness, although on Saturday I would have happily let a vet put me down.

Hi Handbags - I'm about 9 or 10 weeks post chemo and realised at the weekend that I have no numbness or tingling in my hands and feet - it was quite severe at bedtime but even that has gone now (I think taking vit B12 has helped). The hot flushes (which woke me a few times at night) have all but gone (although I'm on tamoxifen now so not sure if they'll start up again) in the last few weeks too. SO hang in there - it gets better but no where near as quickly as I expected!!
I was very flat for 2 or 3 weeks (maybe more) - partly because I still felt rubbish and partly because it is quite an anti-climax I think. (TBH I still get odd moments - more than when i was having treatment.)

handbags didn't realise you had finished chemo. I have the hot flushes too but assumed it was menopausal (caused by chemo) Also felt v tired after finishing, finally bounced back after about three weeks.

Mummy wheel the oncologist will just tell you which regime you are on and what to expect. I had a group chemo session too which told us all of the different side effects and what to look out for. It made it sound much worse than it was and told us no one was allowed to sit with us while we had chemo which turned out not to be true so I'd have been better off not going really

New ladies have you all booked your look good feel better session ? I know I go on about it but it's fab, they show you skin care and how to do your makeup and you get a big bag of goodies to go home with, lovely make up, skin care, perfume etc.

You are all completely brilliant. I have written all your suggestions down and feel much more armed for the fray than I did before (I'm not really into military metaphors for this illness, but on this occasion it feels right). Thank you all so much.

I'll second that Wren what would we do without the veterans!

Lactoferrin - well worth googling that word and cancer and chemotherapy. For example www.deakin.edu.au/health/medicine/research/immunology-molecular-biomedical.php will give some background on it. It's a natural milk protein. As with all things, read the bottle and use common sense. Check with the team if at all unsure.

...and most of the bacteria in the gut are the good guys, so boosting their strength is useful.

I have also been taking notes, thank you ladies! My chemo starts in 2 weeks.

I have another question. When were you able to drive? I pick up 3 children from a school about 20 km away, Monday and Tuesday every week and the chemo will be on every 3rd Tuesday. I obviously don't want to be doing this if I'm not in a fit state, but I do need to make alternative arrangements for the days I can't do.

I asked the nurse on the cancer team at my hospital about cold caps and was strongly recommended not to do it. She said that it tends to have rather patchy results and going bald in patches looks much much worse than a wig or scarf!

I have short hair anyway but I was considering going very short the day before chemo as in this and getting a selection of scarves.

updating whether or not you use the cold cap, is YOUR choice. I was pre warned by my BCN that some of the nurses in the Chemo unit try to talk people out of it, because it adds time to the length of their treatment. Therefore adding extra work to the nurse dealing with you. But it's your choice. I chose not to have it, but a few of the ladies I have seen throughout my treatment who have used it, still have all their hair! So think about what you want! Xx

Updating, all depends on individual reaction. I worked and drove all the way through mine. Others are in bed two weeks out of three feeling pretty darned rough. Can't tell. I'd make backup plans.
I had a great time with wigs - I had five for different occasions but others are fine with short/no hair, scarves or whatever else. It was a heck of a shock to have no hair, though, at the start.

I have to say that I haven't driven on chemo days, and the chemo team recommended that I didn't in case of sudden nausea or faintness. Day after isn't an issue though.