Chemo advice needed

hi Hugs,
You are doing all the right things - expert chemo gal !!!

I can't think of anything except.....

Is your Oral B the alcohol free version??? I think it needs to be.

Aveeno moisturising cream is very good and is recommonded during chemo as being pure.

Maybe for this round keep a diary of exactly how you feel each day - it will help you in the future to map out what you will be able for if you get invites and wonder what stage of the cocktail you will be at and how that particular day will be.
thats because chemo is like groundhog day - what you experience with the first session is what you will experience for the next three rounds of the ac (?) regime.......

I was always on a high for from day one monday till friday.... dropped a bit on saturday and felt a little woosy and sunday I was also a bit off form.... then starteded coming around on the monday, tuesday again and ready for anything from the following wednesday onwards to next chemo.

I can't remember the name of the tabs - they were the dessy.....
Anyway they used make me sleep for ireland !!!

However, Hugs you are doing all the right things - drinking very important too I was told - so keep focused that you only have three more spikes of this cocktail and then you will be changing to a whole new cocktail (there just might be a bit of brandy in the next one!!)

It will be over before you know it -

keep up ''la attatide'' - thats the biggest weapon !!

luv
r

Hi Hugs,

I'm dipping in and out of the forum these days while I try to get my life back to 'normal' after my treatment! At least now you've started into the chemo regime..it's horrible waiting for it...you are on your way now!! Sounds like you have it all sussed, following your instructions etc. I had the same regime as you...4 AC followed by 4 T.

I found the first 4 days or so ok, then followed by a few very very tired days. Usually I felt best on days 13/14..just in time for the next round. I haven't really got much else to add except to listen to your body and rest rest rest. Also like you've said I got so thirsty too and drank gallons of water and juice etc.

One good tip I would give you..I started out using corsodyl mouthwash.yuck.. started staining my teeth too(as if we haven't enough to deal with) so I spoke to my Dentist who said he recommends a mouthwash called 'Kin'. I changed and never had any 1 mouth sore for the whole duration.It's supposed to be gentle but very effective (it's available in most chemists).
My hair came out about 2 days into the second round of Ac..I think that's fairly typical.It's coming back thick and fast now...with a mind of it's own I can tell you!!
One great thing I found during chemo ( I know I actually said great thing)...I had the clearest skin ever!! Think it was because of all the fluids I was drinking!!I got quite a few compliments, which was nice at that time!! If I think of anything else important to tell you I will..oh one more thing...eat plenty of fibre

Take care, you'll be out the other side in no time xx

Thanks for that. Yes the oral b is alcohol free. fingers crossed it will do the trick. I was afraid I would be told to use the corsidil, and lets face it, black teeth is not what we need on top of everything else

I find that food tastes wrong, its driving me mad. Unfortunately Im still geting hungry, so no lbs are going to be lost here
Is it necessary to restrict where we eat out? ie Ive been afraid to have a chinese or chips from a chipper just incase I get food poisining.
Although that will do me no harm either..lol

Im heading to a hotel and spa on tuesday with my sister for two nights, (straight after my ct scan.). Any advice for me?
Theres a lovely pool and jaccuzzi, and im torn between taking the chance and wrapping myself up in cotton wool.
Im booked in for a facial, it does have a lovely head massage aswell, and shoulder and arm massage. Ill just get her to go lightly though. Ive only had a sentinial node biopsy, so I think im ok for light massage.
Should i swim or should i not...should i bring my own sambos or will the hotel food be ok..decisions decisions.....

Still so far so good. Ive had good and bad moments, but none really rotten. I was afraid that id be in bits after the neulsata injection that id be in bits, but no bone pain so far touch wood.
I have had one or two 'stay in pj's' days, but the weather has been so bad, i wouldnt be going out anyway

My head is stinging me, I know its the scalp getting ready to let my hair go. Im going to get it cut really short next week before my next session. Although I feel like pulling it out. Any advice while im here on what to wash my head with when its gone, coz I sure as hell wont need shampoo and conditioner

Im off, my rambelings have gone on long enough.....

Oh and summerbreeze I bought the kin mouthwash aswell. It tastes ok too. Im a bit worried about mouthsores alright, its going to be bad enough being bald, swelled up, without not being able to eat at all.

Just catching up on your progress hugs, and it's so reassuring as I face into my first session next week. Thanks for your advice too summerbreeze, it must be great to be at the other side of all this. I'm going to look for the 'kin' mouthwash too (though the hospital suggested that salt water was sufficient to use as a mouthwash).

Has anyone tried scalp cooling as a way of trying to reduce hair loss? It has been offered to me as an option by the hospital but I've read that it's not very successful. It involves an extra 2 hours sitting with a freezing cold 'helmet' on your head after each chemo session I suppose if I knew it'd work, I'd do it, but if it's just going to be another hassle on top of everything else, I won't bother. I've sorted a wig and am coming to terms with the idea of hairloss so maybe I should just cut my losses and go for broke.

Hi ladies,

Hugs glad to hear you are doing ok so far, that spa break sounds so nice!! I have to say I was a bit of a scaredy cat during treatment, I was afraid of catching swine flu during my treatment time , it was rampant then! Also I had neulasta every fornight too, but my blood still used to go extremely low, like clockwork. They would always ring me from the hospital to warn me to watch myself that I was very open to catching any every kind of infection..
It was around Christmas time too so shops and places were very busy..'germ centres' to me!!I have to admit I found that bit really tough.

If your blood counts are fine and you feel good I would say go and enjoy yourself. My appetite was really good the whole time too..and I wondered about what to eat at times like chinese etc. I just went with food I had eaten before and places that I trusted. I definitely wouldn't chance somewhere I didn't know!
The tingling feeling on your scalp sounds familiar, same happened me. From then on I just used Johnsons baby shampoo, it's nice and gentle and keeps the scalp nice and clean.

I don't think there's anything else...other than to say you are airing all the exact same worries I had at the time, it can get so overwhelming at times..millions of questions racing through your mind..just keep coming on here...there's quite a few of us now (unfortunately) have been there and are only too happy to help xxxx

Regine, Best of luck to you as you start into yours. From the start of my treatment I counted down, so I always focused on how many were done and not on how many I had left! It always helped me to stay positive.About the scalp cooling, I heard about that too and thought about it, I decided not to bother because there were no guarantees it would work..and I didn't fancy sitting there either for 2 hours or so...figured I was long enough sitting in the chair for chemo..I wanted out of there!!! I wore scarves and bandanas for the duration,I suppose I just decided to go for broke like you said, and just accepted the hair loss as part and parcel.It is a cruel side effect but I found just accepting it is easiest in the long run.I know it seems like far away but it will come back thick and fast!
Good luck, xx.

hi girls,

I'm doing this from my new pnone so God knows what it will look like!

Great tips so far. One I forgot previously is to brush yr teeth often but GENTLY and use a SOFT toothbrush.

I think swimming is ok but NO jacuzzi - the temperature and moisture are great breeding conditions for germs!

Hugs from Flo.

Hi Everyone

Thanks so much for all the info on this thread it is really
great
I had to go in on Monday to have a Portocath inserted under General Anestic and he also decided to expand my so called
reconstructed boob!!!!!!!!!!
I was in from 8.30 until 7pm so was pretty whacked facing
into my first session of chemo on Tuesday, havent been too
bad since very woozy, bit like having a very bad hangover
I am doing everything I am being told and picking up all the
tips from you girls, thanks again,
Hugs, hope you really enjoy your break I think even the change
of scenery is great I am 8 days behind you so am really
interested to know about the hair
Regine best of luck next week, it is a relief to get started in some
ways, waiting and wondering is worse

Talk soon, and keep up the good work

Luv
Dee

Hi everyone
Not much to add to all the above. Check with hospital before the spa treatment I know I was warned off it. I was also given a perscription from hospital for "Magic Mouthwash" the chemist makes it up specially and it's a pink colour, I never suffered with my mouth once I got it. As for the tinngling scalp I got again from hospital "Betnovate scalp application" it's applied at night and worked for me. As for food even though I could not taste it I ate everything and am sorry now as I put on a lot of weight which is hard to shift.
Keep rolling ye are doing great.
Evelyn x

Hi all,

Well, I had my first chemo yesterday and all went fine. Had the portacath fitted on Friday (not very pleasant but at least it should spare me some discomfort over the coming months). Anyway the chemo was ok. Is it just me or does it look like poison - specially the red syringe, if anyone else has had that?! Oh well, a necessary evil I suppose

I used the scalp cooling machine throughout the treatment and for 2 and a half hours afterwards, which really lengthened the day for me, but I wanted to try it at least. Who knows if it'll work or not, but at least I'll have tried. There's a 50/50 chance of keeping my hair, though there probably will be some thining anyway. I've sorted a wig and scarves in any case, so I suppose I'm prepared either way. Wearing the minus 6 degree helmet was NOT pleasant, but to be honest after the first 10-15 minutes my head went numb and I didn't really feel it!

I was really tired last night, but feel fine today and have some energy (which the nurses said is probably due to the steroids I'm on for nausea). I'll probably crash at the weekend!

One down!

Hi Regine
Well done on getting over number 1 session, you are on the
way. My first chemo was last Tuesday and I wasnt great on Friday Saturday and Sunday, but am doing really well now, so its not so bad.
I also got a shock when the nurse came to give me the
red syringe she was covered from head to toe with double gloves and goggles on and I was thinking she is putting this into
my body!!!!!!!

talk again

Dee

Thanks for that Dee, it's good to know what to expect in the coming days. They just kept telling me at the hospital that 'everyone is different', but they must have some idea of what days you're most likely to be feeling at your lowest.

Yes, I thought the same thing when I saw the nurse with the gloves and goggles! It was very daunting to think she was putting that into my body.

Take care and hope you continue to feel good.

x

How is everyone doing? I had my second dose on monday, and so far so good. Everyone here kept saying that chemo while wasnt nice...it was 'do able'. I think I know what they mean now...lol.

Ive been doing fine so far. Im just taking it one day at a time, and rest when i need to. My worst days seem to be sat and sunday (yesterday and today), but even at that its nothing i cant manage.

On the sunday after the first treatment, i felt awful, i had a horrible taste in my mouth and everything i ate tasted waxy. I had a horrible burning in my stomach for the day and I was very bloated (i felt as if i was going to explode!). I panicked a bit because i thought it was going to continue, but on the monday morning i woke up feeling like a new woman and had a great week.

So today i feel crap, but im hoping to be feeling better tomorrow.

My hair started to fall out on monday evening as expected (so no shock there). I had it cut short last week in preparation.
It was odd as it was coming out in clumps. My youngest child is 9 and i was afraid he would freak out, so we have talked a lot about me losing my hair over the last couple of months, and he has been helping me brush my wigs, and pick hats etc.
So when it started to fall out i got the hoover out and he hoovered my head
My dh shaved it for me on tuesday. The relief was immense
Ive been going around the house bare headed, as i dont want to feel that i have to cover up. My head is a lovely shape, i was afraid that it was going to look knobbly, but its not too bad...lol
It is a bit itchy, but the little stubbly bits are almost gone thank god!

Im probably all over the place here, but Im finding it hard to concentrate when im writing on the pc.

Regine and Deema, what are you on? Im on AC and T. (ac for 4 treatments, then T for 4).

I know what you mean about the red dye, it looks scary alright. It is scary to think they are putting that into your veins, and have to protect themselves because its so toxic.

I have to go in on tuesday to have the port put in, better late than never i suppose. What was it like getting it in? Are you very sore afterwards, and is the scar big...lol

Take care of yourselves.

Oh and just a quick thing on the spa. I had a great time. i was feeling well and managed to relax so much better than at home!
I had a very light shoulder/head massage, and a faicial that was to die for. It was great to do something that wasnt 'cancer related'.

Flo, I took your advice on the jaccuzzi...although that was hard....lol.

One other thing I have noticed is that my sense of smell seems to be altered for a few days after the chemo. Everything smells horrible and really strong. Even dove soap which i love the smell of is making me gag
Hopefully it wil pass soon.

I'm feeling a bit overwhelmed by everything today. It's probably the tiredness and weariness I'm feeling and the worry that every day will be like this. The two days after treatment were fine but yesterday and today have been bad, and I haven't been sleeping too well at night despite the fact that I'm exhausted. Suddenly my positivity seems to be dwindling, and that's the last thing I need. I've been so positive all along and so determined, but right now it all seems such a huge mountain to climb

I have 16 treatments in all - 4 fortnightly ACL and 12 weekly T treatments (of lower dose as they're weekly). It just seems an eternity before it'll be done.

Sorry for dragging things down but I know you girls will understand.

Hugs, getting the port done wasn't too bad and definitely will be worth it in the long run.

x

Hi Regine. Its only natural that youre going to have some bad days. Dont worry about coming on here complaining, thats what we are here for. There is no point pretending youre feeling good if youre not, I know in the real world we have to put on a brave face, but not here

By the end of these two weeks, you will know more about how youre going to be feeling, and hopefully it will be more predictible.
I know on my worst days after the first round, it was the sat and sunday after....I started to panic because i felt so bad and thought it was going to continue. Hopefully it will be the same with you and you will feel better soon.

Dont forget to really take things easy and look after yourself.
I know i forget sometimes!
I was looking at the mirror the other day and i said to my dh 'oh i look sick', and he said 'duh you are'...... I forget sometimes that I am not in the best of health at the moment.

I felt quite weepy today, i wont watch the news, cant listen to sad songs, had to change topic of conversation a couple of times. I feel ok, not depressed, just teary. But we are allowed to be!

Try not to dwell on the length of time the treatment is going to take, I know it seems forever, but you will get there.

If you read some of the older threads here, espically the 'im so afraid' one, you will see how women have gone from the early stages....and have finished treatment now........ It was a life saver for me when I first came on here.

Take care of yourself xx

Hi Regine
I know exactly how you feel, that is the way I was on Fri Sat and
Sun after getting my first chemo, on the Tuesday, couldnd sleep
was exhausted felt very down because I thought I would feel like that every day, but on the Monday things started to improve
and every day was a bit better, it is ok to complain on here because we all understand and it makes me feel more normal anyway and that I am not the only one feeling bad
it is impossible to feel positive all the time sometimes you have to give in to these feelings.
I am having my second chemo tomorrow so am really hoping I will be a bit better this time, waiting for my hair to go should be anytime now, not looking forward to that but it will grow again!!!!!!!
Hugs,
I am on the same regime as you 4 lots of AC every two weeks
and 4 lots of Taxol every two weeks. am counting down 2 gone
after tomorrow
Keep up the spirits girls,
Talk soon
Dee

Good luck tomorrow Deema, I hope it goes smooth for you!!!!

You will probably start to lose your hair very shortly. Mine started to go the night of the second dose. I had it cut short the week before to make it easier. I had been testing it a few days before, giving gentle tugs to see if it was loose. But by the monday nght it was coming out in clumps. By the thursday I had had enough and I got dh to shave it to a number one. I found it a bit sore as it was falling out, so it was a relief to get it off.
The stubble was irritating me, so i got a lint roller (like sellotape) yesterday to it and managed to take a lot of the stubble off. My head is almost smooth now thank god. Ds (who is 9) had a great time using the roller on my head. He is going to draw some tatoos on it once its completly smooth. He wants to use permanet marker, but ive said no thanks.....lol
I dont wear a scarf in the house, i just dont want to feel that i have to cover up at home. I suppose for me the hair loss isnt important, im glad its gone because it proves the chemo is working (well, thats my theory)

Im in for my port placement tomorrow. Sometimes i feel as if i should just move into the hospital im there so much

Hi Hugs
I know what you mean about moving into the hospital!!!

Thanks for the advice about the hair I keep checking it to see
if it has started to come out yet, I suppose it wont be long now

Good luck getting the port in tomorrow I cant give you any
advice as I had mine in under General but they say it is a bit uncomfortable but ok, they will use mine tomorrow for the first
time so hopefully it will be working ok

Thanks again
Dee

Thanks so much for your reassurance Deema and Hugs. Today has been a better one and I'm feeling a bit brighter (helped that I slept well last night I suppose!). It's so good to be able to talk here to people who know exactly what I'm going through. Sometimes it's just enough to know that not every day will be a bad one and that the good days will help us through the not so good ones.

Good luck with the port tomorrow hugs.

Just popping in quickly. Today was horrific
It is the worst day i have since this whole crap started in january.

In the hospital at 8.30 for blood tests. Supposed to go for the port placement at 2. Hung around in the waiting room in the hospital reading (no food as i had to fast ....lol)

Eventually called at 4 o clock to have the port put in. The surgeon explained what was going to happen. I was a wee bit nervous but not bad overall.

Brought in to be prepared. All going well.

NO SEDATION was given. Just local anestectic (sp) given...which by the way hurt like hell.

I got very upset...sobbing.....shaking..... tried not to panic as they were at my neck with a scalpel.

Nurse asked if i was ok, i said no, she said would you like sedation..I said yes....... No sedation given.

20 minutes of hell......I cried and cried and cried...and im still crying.

I was then kept in the hospital for 3 more hours, so it was 8 by the time i got out.

Im just so upset, i have managed to keep myself together through this whole thing..what has to be done has to be done. Why was i not given anything to relax me????? No one can give me the answer.
When I got back to the ward, the nurses were shocked that i wasnt sedated.

Sorry for ranting

Oh Hugs,

My heart goes out to you that was horrific as you say you
try so hard to keep everything together and then they do
something so stupid as not to give you lots of sedation, it must
have been so upsetting all I can say to you is to try and put
it behind you and get back to your usual bright cheerful self

I used my port for the 1st time yesterday, and it was a lot
easier and more comfortable, so just keep that in mind

I was lucky then I suppose that the surgeon wanted to do
it by GA
I usually see him in Waterford but there was a 4 week delay
to put in port there where they do by local as well, so he
decided he would do it in Wexford (which is where I live) so after
hearing your story, I am glad.

I will be thinking of you and even say a little prayer ( Im even starting to get religious with all this )

This is all so hard really but we have to look at the end
results and I keep looking forward to 2011

Love
Dee

I have calmed down a lot today (still a bit upset).

When i was brought back to the ward afterwards, i was in an awful state, I just couldnt stop crying. When i told the nurse, she was shocked and said she couldnt understand it, they always sedate people for the port placement. I think she was the head nurse. she said she would be having words with the surgeon the next day.

I have decide that Im going to write in and let them know how bad it was, i hate to think how many people they have done this to.
And when im getting it out Ill be demanding extra sedation

In for my next chemo on tuesday, Im looking forward to trying out the port then!!!

OMG hugs, I can't believe they didn't give you any sedation. You poor poor thing

I was sedated and had local anaesthetic and it was still not so pleasant, but at least bearable. I could feel some pressure and 'tuggiing' sensations but at least I was sort of sleepy at the time.

I hope you feel a lot better soon, that sounds so traumatic

xx

It was
I might drink a bottle of whiskey before they take it out...lol

Oh Hugs,

I am so sorry to hear you had such an awful time for your port placement. This same thing happened my sister recently when she had her port fitted.

I personally think they are doing it without sedation because it would be so difficult to find a vein to use to administer it and because of time constraints (usually people who need a port get one because they have difficult veins). Its a disgrace so you definitely should write to complain and also visit http://www.ratemyhospital.ie/index.html

Hope you are feelling better now.
Hugs,

Flo.

PS - To all you ladies doing chemo at the moment: Part of the reason you feel ok for the first few days, but then get hit with exhaustion and feeling cr**, is probably because you take steroids for the first three days which give you energy. You then have a slump on days 4 and 5 when you stop them. Talk to the nurses in the chemo ward to see if there is anything you can do to minimise this. Maybe doing NOTHING on days 1,2 & 3 even if you feel ok might conserve some energy for days 4 onwards?

Hi Hugs
Sorry you were so upset getting the portcath inserted. I went through hell getting mine in under local anaesthetic but put up with it because i really have no veins and I did not want them poking to inject me with sedation. Once it's in now it will be so much easier to administer the chemo. Mine did get blocked a couple of times but sure that would happen to me. Make sure when you finish the chemo you go back every month to have it flushed until it's removed. I am hoping to get mine out in October.
best wishes to all having chemo at the moment
Evelyn x

Thanks for the replies. Im still quite angry about it. The annoying thing is that i already had a line in my arm when i went in for it, all they had to do was clip the drip on!!!!!!!!! Thats really upsetting, as I was in a mess from the very beginning
It isnt just that i flipped out at the end, and it was too late to sedate me...they could easily have given me something.
The nurse on the ward told me that they always sedate people for it. But aparently the head nurse had words with them the next day.
I have written a letter, I just dont know who to send it to. Im not looking to have anyone get into trouble, i just dont want anyone to unnecessarily have to go through that.

Im sorry you had to do it too evelyn. Its awful having to go through that. I know ive taken everything on the chin, and just get on with it as much as possible.....but last tuesday was really shit. Ive had nightmares about it (waking up holding my chest, DH said i was crying for them to get away from me.
Im terrified about getting it out. I dont know if even sedating me will be enough

Now away from all that, how is everyone else doing? I hope the counselling is going ok for you Evelyn!

Hows the chemo going Deema and Regine? I had my 3rd round today, almost half way there

I was very tired earlier, but seem to have perked up...pity its 1 am ...

I had a good week last week, managed to get to wexford on thursday for a few days, and enjoyed it. I dont have the energy I used to have, but i was able to go to the beach and out for short walks, and shopping of course. Still taking it easy when need be, but enjoying life as much as possible.

Hi Hugs,

Send your letter by email to yoursay@hse.ie

They ask that you include:
* Who was involved?
* What happened and when?
* What are you concerned about?
* Have you done anything else to resolve this matter?
* What do you want to happen now?
*It will also assist the Complaints Officer if any extra information and/or copies of other relevant documents are attached to your written complaint.

And here's a link to the webpage about their complaints procedure. Apparently, they only received around 2,000 complaints last year?! Maybe because no-one knew where to send them to - they don't make it very clear.

Glad you got a few days in Wexford. We sometimes get to my brother's holiday home in Duncannon. I love it there, the walks on the beach do me (any my head!) the world of good.

Take it easy,
Flo.

Poor hugs......... not good enough to have to go through what you went through - I could almost feel your pain while reading your post.
- What I found during my chemo year was that you have to take the
attitude of ''watch out''
We were always told not to question the thoughts and actions of
certain members of society including medics................ now we know differently - the fact that you did plead for help and that you were ignored is a disgrace......... really Hugs why shouldn't someone be held responsible for your pain - by golly, all of us on this site know that there is enough to put up with without un-necessary additons due to neglect.
Get that letter to the HSE and if you have to go and find out who the team were do........... you might spare someone else from them.
What a horrible thing to happen to such a positive and good person on our site.
Sorry I don't pop in as much - now that I am over the chemo etc I am thinking less and less about having had BC.
Yes girls, you will be putting it behind you and you will be all the stronger and will appreciate every moment of living.

take no s&&& girls.
(I am usually not a bitc&) but cruelty to animals upsets me, cruelty
to humans makes me furious

xx
r

Hi Hugs and the others on the chemo run. Like Roxanne I am sorry for not been on as much lately. My problem is I am still at the crying stage and reading your letters sets me off on my own journey the last year. I got through the operation and chemo ok but my head is gone since I finished. My emotions are all over the place. Have seen the counseller 3 times now and God love her I ve used all her tissues. I think I pretended during it all that I was fine (my way of coping). I did not ask for enough help and am drained now. Girls dont just ask for help demand it. Sorry for sounding off.
Good luck with the rest of the chemo
Evelyn x

Hi Evelyn,
pet, you sound a little down - I know we all say ''stay happy, happy, happy '' on this site and I guess thats what keeps us going during the days of chemo........ but , yes, alot of people have similar experiences to you when its all over. I think it may have something to do with letting go of the support of the hospital - suddenly, the chemo is over, the hospital visits are less frequent and its like the aftermath of a holocaust............... suddenly the mind and body have time to reflect and i guess this is where you are now.
But you are doing the right thing going to talk about it - hey, there are plenty tissues in the world so keep using them and let it all out.
Things will come around - maybe the tamoxofin is doing this and when it settles you will settle too.............
I thought too that when the chemo would end that would be it - life as normal again.
However............ the hot flashes are unreal........... I am lower in energy...................but some friends who are beyond the five year mark all told me that about two years into the tamoxofin I will wake one day and say ''gosh, my energy is back'' -
a lady in a healthfood shop recommended flora essence to wash the residues - i bought it but didint use it yet - it has to be taken on an empty stomach before bed......... maybe it is good........

anyways, treat yourself - maybe a massage or spa treatment - let the body know that all the yucky stuff is over and the enjoyment is about to begin again..................

Hope I haven't been '' rambling'' (which I have) ............ the bottom line is we are all here for you and each other so I sincerely hope that you ''turn that corner'' soon.

hugs,
r

Hi,
I'm sorry if I'm repeating someone else's post but just wanted you to know that I'm taking Menoplus which has Black Cohosh in it to try to cope with the hot flushes, I'm also taking gingko for energy. I feel ok, maybe not marvellous all the time but a hell of a lot better than I thought. By the way I'm finished chemo, surgery, radio and now on tamoxifen.
Hope this helps,
Garcon

Hi Evelyn. Im not suprosed its hitting you now. I think once the treatment is finished people expect you to be back to normal straight away, but from what ive read it takes a good while.
Be good to yourself, dont expect too much either. Im giving myself a year at least, before i expect to even feel half normal.

Its great that you can come on here sometimes, at least you can let us know what might be ahead of us

lm not doing too bad...so far. 3 down, one more AC then onto 4 tax.
Its mad, because I more or less know how im going to be feeling on particular days, and know not to put too much pressure on myself when I know im not going to be great.
But when the tax starts, im not sure how ill be.

My head is a bit like mush at the moment. I find it hard to concentrate, and when im typing I have to keep going ove my spellings, and somethings dont make sense (maybe thats just me though...lol)

Hope everyone else is doing ok xx

hi due to start fec chemo on tuesday and have been told to order wig as soon as i can. i live in clare and can see no wig suppliers here. My 6 month pregnant daughter wants to visit me the following weekend and i am worried that i will feel and look bad and upset her. I willask nurse if it save for her to visit. Great to read the messages.

Hi Lunamoon,

Sorry you have reason to join us here but glad you found us!

I did some digging and found a West Clare cancer support group. If you give one of the ladies a ring, I am sure they will be happy to give you information on where you can get a good wig locally.

If you are uncomfortable ringing them, let me know. I remember it being an intimidating subject to tackle when you are feeling vulnerable after diagnosis? I am happy to ring and get details for you if you would prefer.

Some people here have also gotten wigs on the internet. They are cheaper usually and it can be nice to have a few different ones sometimes.

NB. If you have a medical card, your wig is FREE from the HSE. The ladies in the Clare Cancer Support group will probably have details but, if not, ask your Breast Cancer Nurse.

If you don't already have a medical card, apply for one now. They are a Godsend to anyone undergoing treatment.

And remember to come here if you have any problems at all.

Good luck with your first dose of FEC on Tuesday. Remember to rest lots - don't do stuff even if you feel ok for the first few days. Its often days 3 onwards that the fatigue really hits. Let us know how it goes.

Hugs,
Flo.

And the link to the West Clare group would help!
http://www.clarelibrary.ie/eolas/cominf ... _clare.htm

Hi Everyone
Havent been on for a while finding things a bit hard at the moment I have to say I am finding this a lot harder than
I thought,
Tummy is funny most of the time and the mettalic taste in
my mouth isnt good,
Does any one else get aches and pains especially in shoulders and back, I think it is because of the neulasta inj, also my head
is all mess most of the time, and I am getting bored because I can do so little, sorry for giving out so much but I feel better already
after writing it down sometimes it is hard to tell people because
you feel guilty about everything and get fed up saying you dont
feel good and are exhausted.

Good news is that I am finished my third and that means my
next chemo is the half way there mark so on the home run posting.php?mode=reply&f=11&t=446# and am thinking that way most of the time
I hope everyone else is doing ok it is great to have the support

Bye for now

Dee

Hi lunamoon, flo has given you some great advice there (as usual...lol)
Good luck tomorrow!

Hi Dee, dont feel guilty about ranting, thats what the board here is for, its not all hearts and flowers Cancer is crap, and we are allowed to say it

I dont have any back or shoulder pain, or any extra pain from the neulasta shot (touch wood), but I think im in the minority. The nurse said she was suprised as most people get it. I putting it down to the extra weight that I carry...its stopping the injection getting through

I do feel iffy sometimes, its like morning sickness, but it isnt too bad.

I had my 4th AC today, so Im one ahead of you. I cant believe Im half way there already!

Hi,

RE: "dont feel guilty about ranting, thats what the board here is for, its not all hearts and flowers. Cancer is crap, and we are allowed to say it "

WELL SAID HUGS!!!

Someone said to me recently that they didn't like posting on boards cos they were down and felt like they had nothing positive to offer anymore. These boards are not just for GIVING support, they are for RECEIVING support too!

All of us need help and a shoulder sometimes. I've been cruising along happily for a while but now I need to start a new thread for advice. Well, two actually!

Please everyone, don't hesitate to post if you're down or having problems. And if anyone is lurking and afraid to comment, please join in!

Flo.

PS - My sis is having lots of pain for 2-3 days after her Neulasta shot. And she says it makes her expanders go rock hard too - very uncomfortable.

And Dee, try fresh pineapple or pineapple chunks - its recommended for the metallic taste.

thanks for the advice day i over funny head and metallic taste. met a fabulous nurse and other women who told me what to e3xpect. taking each day as it comes. ordered wig from great place in limerick. checking out bandanas. there is a new cancer support centre 5 mins away from me so will go there soon. i know there will be bad days and it is good to know that others feel the same. thanks lunamoon

Hi all, I haven't been around in a while. Have been having some good and some not so good days (like the rest of you on chemo at the moment ). I've 3 of 4 AC done, and will start on 12 weekly Taxol treatments from mid September. They've reassured me that the weekly doses are lower than the usual and that it's all about 'best practice'. I sure hope they're right and that I don't feel wrecked for all of each week. So far I have a bad 3-4 days from about Day 3 after chemo, but I pick up again after that and have a pretty good week before I start again.

I've been using the scalp cooler and so far so good. I've definitely lost a few ribs of hair and have to be careful brushing and washing it but it's not gone yet. Still not sure if it'll go eventually, I suppose I'll have to wait and see as time goes on.

Deema, sorry to hear you've been feeling so down, I know how much this whole thing can draw in on you Hugs, it's great you're nearly half way through. Great to be able to count down Welcome to the board lunamoon and best of luck with everything.

Regine,

If you've made it thru the AC without losing all your hair, then I would say you stand a pretty good chance of holding on to it. The taxol is much easier on the body. My hair actually started to grow back when I was on Taxol. You should find less nausea too (if any), I remember becoming obsessed with food when I switched to Taxol. All the steroids contribute to this too.

Taxol can give you aches and pains in your joints. And sometimes tingly feelings or a lack of sensation (neuropathy) in your fingertips and feet. I was told that gentle walking helps with the aches (worked for me) and massaging in a nice foot and handcream reduces the tingling (L'Occitane do a lovely Lavendar one). If you have a local cancer centre offering Reflexology, now is the time to avail of it!

Hugs,

Flo.

Hi All,

I hope you're all keeping well. I check in to the site every day to keep up to date on everyone’s progress but I haven't posted in ages. To be honest I've started many emails but didn't, or couldn't, finish them. I'm suffering terribly with "chemo brain" and find writing emails quite difficult. On my worst days, normally the first 3-4 days after chemo, I really struggle to find words or use the wrong words in sentences. It's so frustrating - I feel like a complete ditz.

Anyway, I have a quick question that I hope one of you can help me with. I'm a week out from my second chemo and I'm suffering from angry spots on the base of my head. They seem to be filled with puss/goo or whatever. They're sore too. I've googled the problem and it seems to be common enough but I can't find a treatment apart from antibiotics and I want to avoid them if at all possible. I wash my scalp with baby shampoo and cleanse and tone as part of my daily routine but I don't think either are the cause. I've tried Eurax and Hc45 (E45 with hydrocortisone) but no improvement.

Any ideas greatly appreciated,

Thanks,

Karen

Hi Kar,

Sorry you are suffering from 'chemo brain'. It can be SO frustrating, can't it? I have a theory that its not the chemo that causes it but from the lack of estrogen caused by the chemo. I still have it and its almost 4 years since I finished chemo!! But I have no ovaries and am on Arimidex so no estrogen at all.....

Are the spots at the back of your head, near the top of your neck? If so, it could be your wig causing them. Your head gets hot with the wig on it, your head sweats and it accumulates at the stretchy/adjustable band bit at the back. I would give it (the wig) a good wash. You need special shampoo for this, ask whoever you got your wig from. Or a hair dresser.

For the spots themselves, maybe a dab of antiseptic cream after you wash your head? I too hate bloody antibiotics but if they don't clear up soon, talk to the nurses about them. You can't risk an infection spreading when you are on chemo with a lowered immune system.

Hugs,
Flo.

Hi Karen. How are things now? I havent had spots as of yet. I dont wear the wig often though so i dont know if its to do with that.
I find its too hot to have it on much. At home i dont usually wear anything on my head, and just wear a cap out. I wear the wig if im dropping ds to school though (not that he minds one way or the other)

I started Taxol last week and oh my god the bone pain is unreal
Im hoping it doesnt get worse as time goes by. I feel about 90 years old. I definately deserve a holiday after this

I think ive been really lucky until now, so i just have to grin and bear it. 5 rounds down...3 to go.

How is everyone else doing?

Hi Hugs
I also had the awful bone pain but hospital gav me great painkillers which really did work.
Evelyn x

Hi Hugs,

See another post regarding your bone pain. My sis is getting Tramadol pain relief and a low dose of Diazepam to help relax her. She finds this has reduced her bone pain. She says the pain is worse on days 3-5 (or 4-6?) when she comes off the steroids.

Hugs,

Flo.

Hi Everyone,

How are you all doing? I don't see anyone posting a lot recently. I hope this is because you are all busy getting on with 'normal' life and are coping fine with chemo.

Flo.

Hi all, haven't been here in quite a while, but as you said Flo, mainly because I'm getting on with things!

I started my weekly taxol treatments 5 weeks ago and so far so good. I was dreading having weekly treatments but actually it's working out fine. The side effects aren't as bad and I'm definitely not as tired as I was when I was on the fortnightly AC. I've had some bone pain, but it's not too bad. Hugs, I hope your bone pain has lessened a bit and that you're doing ok too.

BUMP for ceedee