Starting Chemo November 2012

[Guest user]

Hi sparklers have not been around for a while, I have one more tax to go and I too feel bloated prune juice seems to help this. For sore feet my hospial recommended aveeno there are several types but the one that works for me is the Shea butter body lotion, I think it is awesome and while my feet are still sore they are heaps better hope this helps

[Mags2710]

Hi sparklers, has anyone suffered from having that bloated feeling and terrible wind while on Tax. Hugs to all xxxx

[SuperSusan]

Been to the hospital and have been put on antibiotics for my chest,. Now we wait to see if I will be well enough for my chemo later this week (which they doubt ). It's really getting me down as I just want this one to be over so that I will only have 1 left!!!

[Guest user]

Hi all

Jelly, all sympathies, just read your post about peeling feet after trying to cut more peeling skin off feet which are sore, but not as sore as first time.
Due to side effects first time, they reduced my tax by 25 for this and what should have been last next week but may then have to have full dose afterwards.
All, I have to see surgeon, this week as they eventually realised I have not seen her yet, as first visit cancelled due to biopsy not being ready - I have questions but would like to know what things to ask etc

I also have problems when posting on I Pad with auto spell but not my laptop

Good luck everbody with their hopefully last doses this month

[Guest user]

hey everyone, last chemo on thurs, my nails have started to die and will prob fall off and that was from one taxotere. skin is peeling on feet too. hope everyone is doing well we really are getting to the end of it and it feels great. cant wait to get back to normal again xx

[SuperSusan]

Hi Sparklers, Well done to those of you who have had the last chemo...you've got through the worst of it!!!! For the rest of us, a final push should see us through!

I have just got a cold and cough from hell and feel pretty rotten with it. I am just hoping and praying that it won't impact my chemo schedule as I really want to get it over and done with. I still have 2 to go - one this Thursday and one on 21st March. Fingers crossed today for ok bloods and no transfusion needed either!

BorderCollies / Shazza / LucyPenny - My onc said that the "C" can cause bladder irritation but it shouldn't really impact the ability to hold on when needing a loo. She suggested that perhaps it is down to the fact that I am drinking a lot more than usual, and that when I finish chemo and go back to drinking normal amounts then it may well settle down. If not, it may have to be a visit afterwards to the GP!

[Mags2710]

Hi sparklers, I've got one more Tax to go and just received my dates for RADs. pre-ass 21/3 and start 8/4 for 4wks. Went to a wedding last nite with OH, nice to be normal although lots of friend asking how I was. Had the wig on an they didn't know it wasn't my own hair as it was a good match. Tired today but was worth it. SE have only been bone pain paracetamol and voltral seem to do the trick so far. Hope it stays that way. Hate the menopause SE it would be nice to get a good nites sleep for once.
Big hugs to all. Hang in there.xx

[Mags2710]

Hi sparklers, I've got one more Tax to go and just received my dates for RADs. pre-ass 21/3 and start 8/4 for 4wks. Went to a wedding last nite with OH, nice to be normal although lots of friend asking how I was. Had the wig on an they didn't know it wasn't my own hair as it was a good match. Tired today but was worth it. SE have only been bone pain paracetamol and voltral seem to do the trick so far. Hope it stays that way. Hate the menopause SE it would be nice to get a good nites sleep for once.
Big hugs to all. Hang in there.xx

[PhilBM]

Well, the 6th of 6 chemo cycles just went in, still got 12 more herceptins, 3 weeks of radio and 5 years of some tablet but I can't say I'm not pleased.

[Guest user]

Supersusan- I was told by my onc that the 'C' in FEC can cause bladder issues. have you discussed with you onc yet? I am sure they can help you so worth raising if you haven't done so already.

today is my final treatment, fingers crossed. I have mid treatment bloods as they keep an eye on my kidney function due to pre existing problem.. Which is holding up well despite initial predictions:-) however my liver is really straining now and they are concerned. If my liver function is the same as last week I will have a very small dose of tax, if any worse I may not be able to have a final chemo. Not ideal as my treatments for fec were reduced for kidney issue so I have had far from full treatment already. The good news however is that I did catch this early and my prognosis is good so I must stay positive;-)

Btw does anyone else find that when posting on this site the most annoying predictive text options automatically fill? I usually post from I phone so may be this but I post on other forums and do not have this issue! Just wondered if just me.

best wishes to everyone and keep sparkling.
xxx

[Guest user]

I'm with you jelly I will be glad when it is all over really getting fed up of the constant pain and other side effects now.
Hope every one is ok,
Keep strong
love yvonne xxx

[Guest user]

hi all, been in to see onc on wed going to go on rads trial, either a 15 day course with a weaker dose or a 5 day one with a higher dose. ive found out today that me and my family qualify for braca gene tests. almost at the end of my chemo only 1 more to go and i cant bloody wait. counting down the days now. hope everyone is ok hugs to all xxxx

[SuperSusan]

Thanks for your comments. I too hope it is not a permantent fixture as I too get such sudden urges which I can't control (something that I didn't really have before this).

I am going to see the Oncologist next Monday (I guess to discuss RADs and timings) and I will be asking her about it. I will let you know once I get an answer. x

[Border_Collies]

Hi Susan. My bladder doesn't seem to hold out for long at the best of times, but I have definitely been worse during the months that I've been having FEC. Often get cystitis on the first two days but the sudden urge to "go" has been with me all the way through FEC so I was interested in your post. I just hope that it is a side effect and not a permanent fixture.

[Shazzaboro]

Hi Susan, I'ver had a few problems with my bladder through chemo, not sure if it is related but suspect so. Sometimes I have an urgent need to go to the loo and will do several times within a short period of time. I think chemo does irritate the bladder a little. I'm getting EC x 6. One of the potential side effects of Cyclophosphamide [the C bit] may irritate the bladder. I found this information on the Macmillan site, hope it helps.

Cyclophosphamide may irritate your bladder|. It’s important to drink as much fluid as you can (at least two litres) during the 24 hours following chemotherapy to help prevent this. Epirubicin is red and, as a result, your urine may become a pink-red colour. This is normal and can last up to 48 hours after your treatment. Let your doctor know if you have any discomfort when you pass urine, or if you notice any blood in it.

Shazza x

[SuperSusan]

A question for you all...has anyone found that the chemo has affected their bladder control. I am worried about mine because since I started the chemo I just don't seem to be able to hold on for any length of time. Just not sure if this is a general problem I have developed or if it could be related to the chemo. X

[Shazzaboro]

Hi Yvonne and Wendy,
I've had mine the other way round, with mx first, and finish chemo on 28th Feb. I asked my Onc what would happen at the end of chemo, would they test to see if cancer had gone, etc. I was told they would just treat symptomatically so I'm assuming if I have any other problems they will check to see if its cancer. Other than that I think, because I have IDC [Invasive Ductal Cancer] any signs of cancer I have may be too small to detect anyway after mx and chemo. Wendy, I agree we are all different and in many ways its a blessing we don't know what the future holds. I did get a percentage 'score' for survival rates when I first saw the Onc that took into account the mx, the effect of chemo and Tamoxifen but treatments are changing all the time and I may get further treatment after Tam as I'm under 50 and hadn't gone through the menopause.
Yvonne, I had my blip on chemo number 4. I sooooo didn't want to do it anymore for the same reasons as you, I knew what was coming. I did do it and by 5th one last week it was easier to think about. One left now and will be so glad when its over
Keep strong and carry on sparkling!

[Wendy56]

Col123 - love it . when is your last tax. We sound very similar I have my last tax on 4th March app next Weds to discuss bi lateral MX with immediate recon - hopefully. Do you know which type you are going for it's all very confusing.

Yvonne what makes them say you have a high percentage that yours wll come back. How does anybody know this we are all different and probably just as well we can't see what comes next.

Love to all.

Wendy

[Guest user]

Really do not want to do my 5th round of chemo because I know what is coming as far as side effects are plus been told by my BCN that they can never tell me the cancer is gone as I have a high percent of it coming back 😞
Hope everyone had a good valentines day or as good as we can get!!!
Stay strong we CAN DO THIS !!!!!
love yvonne xxxx

[SuperSusan]

Hi BorderCollies,

Thank you for your long response; it's been very useful. I am on 6 sessions of FEC (just had my 4th on Thursday). I have had pretty mixed results throughout. the first seemed like a breeze, the second was horrendous as I spent nearly 2 days vomiting and then was taken into hospital to try to get it under control. The last 2 they gave me Emend which has helped and so I have just been nauseous this time. The other side effect that I now have is pretty bad pain in my armpit and breast scars, and my arm (after having had lymph nodes removed) now feels as bad again as it did after the operation. I am waiting to see if it gets any worse in which case they said that I will need anti-inflammatories or antibiotics. Here's hoping it will settle down again.

I must say whilst I like the idea of not losing my hair, the fact that I have lost so much between the first and third FEC make me think that I will not manage to hold on to it for much longer. Also I find the cold cap by far the worst part of the chemo. I have come to dread it, so much so that they gave me Diazapam to take to try to take the edge off it. Not sure it helped but I didn't find I was quite as nauseous on the day.

I will follow up with the team to get my oncologist appointment as I finish my last treatment on 21st March. I am now trying to keep focused on the fact that I only have 2 more chemo sessions left and count down to them. After that I will have 4 weeks of RADS and 5 years of Tamoxifan. I'm sure I will be able to handle them better than the chemo.

Good luck with your remaining treatment!

[Shazzaboro]

Col, love the poem, and so well timed for me. I'm having delayed reconstruction. Mastectomy was last August. Still got another round of chemo but asked to see PS about recon as I know there is a waiting list and I wanted to know what options I had, especially if I had to lose weight first! Went to see him last Monday and I have 4 options: no recon, LD, Tram and implants. I go back in 3 months to see him so have plenty of time to consider options and lose a bit of weight. I've also secretly fancied perkier boobs, especially when they started heading south, just didn't think I'd get them via bc Hopefully I'll have a matching pair of boobs with a few scars rather than one C cup and one flat as a pancake [rather appropriate at the moment as its Shrove Tuesday next week lol] Think I'll go for the recon nipple and tattoo though. With my luck the stick on ones will fall off and end up in my coffee, probably while I'm sat in Costa!

Keep strong and carry on sparkling
Shazza xx

[Guest user]

Hi sparklers

Not been on for a while. Sorry so many suffering on tax. I hate it too. Feeling like youve been kicked all over isnt much fun is it? had my 2nd on monday and ended in hospital all day today with high temp and terrible stabbing headache. Stuck me on fluids and gave me some antibiotics. They let me home though so thats good!

Had some time on my hands this week and as my surgery date is now set for 25 march (eek!!) my mind has turned to this subject a bit more now. This is what ive been thinking........

I've always fancied a boob job I do have to confess
And now I'm getting one free on the NHS
Do I get the tear shaped or do I get the rounds
I don't really care as long as they make nice little mounds.
So many ones to choose from in the nurse's little folders
And as I'm going smaller I can throw out my boulder holders
It'll be a shame to see them gone but a relief all the same
And hopefully I'll like my new boobs and might even give them a name.
A bilateral mx isn't much to look forward to
But it's my decision and I'm determined to see it through
The lymph nodes will go too but I doubt I'll grieve
But just to be on the safe side I'll be ordering a lymphoedema sleeve.
All this talk of perkier tits certainly gets my vote
And I wonder when I'm swimming if they'll help keep me afloat?
So many recon options - the ld, diep and the tram
And with dermal slings and strattices I could even end up smelling of ham.
All this talk of expanders and having them pumped up
I wonder at what point they'll stop so I can see my new sized cup
Of course I worry how I'll feel about the inevitable scars
Just hope the stitching is quite neat then I won't look like I'm from mars.
And bloody rads could spoil my plans for my lovely new companions
So I'm praying that they'll stay convex and not turn into canyons
I'm relieved the surgery date is set and the tumours will be gone - phew
And I think I'll go for stick on nipples so better buy in some superglue!

[Border_Collies]

Hi SuperSusan - I'm completely paranoid about my hair and when first diagnosed having got over the initial shock of the BC the possible loss of my hair was the only thing I cared about. Since then common sense has prevailed and I realise being alive is slightly more important.

I'm a natural blonde although as the grey hairs have appeared I now have high and low lights put in and I wear it in a jaw length bob. My hair is (or was) extremely thick and I was advised to have it thinned out before chemo started to allow the cold to penetrate properly. The end result is I still have a complete head of hair - no baldly bits, although it has thinned quite a lot. Saying that if you hadn't seen it in it's natural state you wouldn't know. Like you I have worried about getting too thin on top and I can't wear a wide headband because the hair isn't long enough for a band to go under the back hair. My daughter turned up at the weekend with a narrow tortoiseshell headband, upon which she had crocheted a band of fabric which widened in the centre then reduced to narrow where the band meets the ears. Bit hard to explain, but if I go thin on top this will cover it perfectly and yet it is unobtrusive. Myfingers are permanently crossed that it will survive the last two FEC's!! I'm sure you're right though and will continue with the cold cap even if I do get bald bits as our hair follicles have been protected more than without the cap and hopefully the hair will come through faster and fill out the remaining hair. I hate note being able to style it properly though.

As to my rads appointments - I got the complete list yesterday together with car parking ticket arrangement and the measure up appointment. My surgeon also works at Maidstone Hospital and before I started chemo she told me that she wanted me to go to Russell Burcombe at the Chartwell Suite - Maidstone Oncology Centre as it is more up to date than the London hospitals apparently and has the very latest equipment. This was back in November when I had my WLE. The Oncology suite rang me in December and asked me to go for a consultation. I asked if this could be done a bit nearer to rads and the result was that I had this consultation just before my 4th FEC. Yesterday all my appointments arrived. I finish chemo on 12th March - go for measuring up on 20th March (hope I feel OK) and start rads on 3rd April. When is your last chemo and haw have you been through it all? Is it FEC?

[SuperSusan]

BorderCollies - it sounds like you are doing pretty well all things considered. I am also cold-capping it, but my hair is so thin on top that I am really self-conscious so I am not having to wear a wig. In spite of this and yesterday when I had my 4th FEC the nurses still said that they think it is worth continuing because when it grows it will just need to fill in rather than grow everything from scratch.

When did you get your RADs plan/appointment? I asked yesterday and they say I will have 4-6 week break between my last chemo and my RADS, but I have no appointment or date for it?

[Mags2710]

Hi sparklers, not been on for a while. Am into my second week of first TAX. No sickness but have been tired and some bone pain which ok with anti inflammatories. I've got a rash on my wrist looks like a burn and its blistering. GP gave be antiboitcs incase its infected and a cream. I've also got a nice bit boil like thing on my head, bloody sore wish it wd just pop. Had a walk round tesco the other day and was done in. My poor dogs have been getting walked of OH and kids. Jelly liked the video . Know how u all feel about people saying about being half there.
Hope SE are minimmal for anyone getting treatment this week.
Big hugs xxxxxx

[Guest user]

Hiya everyone
I haven't been in here for a while, it has been so good catching up on everyone, most of us are coming towards the end of chemo, fec 6 in two weeks, I wanted to send you all a virtual hug. I have missed you all, keep sparkling 🙂
love mummybear x

[Border_Collies]

Shazza hairy legs coming through is just Sod's Law isn't it. Why does that happen? I'm coldcapping so have got a good head covering (at the moment - don't like to jinx myself) but my eyebrows and eyelashes although still there are very sparse and "odd" looking. Still have a light dusting of hairs on arms and as for legs, well I'm still shaving them, albeit only every 4th night instead of every night. I'm inbetween FEC 4 and 5.
Today I got my Rads planning appointment together with a complete list of all fifteen rad sessions and I've already been down to the Chartwell Suite at Maidstone for a chat with the Big Cheese down there. They don't hang about, do they. I start my rads exactly 21 days after 6th FEC. I start on a Wednesday and end up on a Tuesday. I thought you had to do a c omplete week at a time.
Jelly - good luck with your next chemo - hope it goes better than the last one!

[Shazzaboro]

5th cycle done, can't believe it. One more to go then on to poxyfen. Yesterday I noticed that some of my hair is growing too, sadly most of it is on my legs! Too cruel

Good luck to everyone with next cycle, hope the SE's after minimal, keep strong and carry on sparkling!

Shazza xx

[Guest user]

thanks MRSR will look into it, off for chemo today as they lost my prescription yesterday, feel like i spend more time in the hospital than at home these days .xx

[MrsR2B]

Jelly, I remembered your post the other day about missing a good soak in the bath once your pick line is in and today I brought something for myself because I've Really missed that too. It's a completely watertight sleeve that is sold for people with casts or dressings that need to be kept dry, it comes right up to the shoulder. it's pretty unsightly and still not the same as a normal bath but compared to the last 9 weeks of showers or quick baths with arm hanging over the edge it's heaven. I got mine from a health care shop that sells mostly items for people who have mobility issues but you can also get them online. Just thought I'd share incase its something you or anyone else with a picc is interested in x

[Pascal_48]

Hi everyone
I am having 2nd TAX tomorrow aswell. This time tomorrow we will only have one left. My main SE from TAX was horrendously sore mouth, felt my tongue was swollen, catching on my back teeth whenever I talked or ate and that the top layer of my tongue had come off. I saw the onc last weekand she gave me some sachets to use 3 times a day,hope they work.
Bit worried about them getting in cannula as they have struggled past 2 times, hopefully ok.
Good luck and hugs xxx

[deeh]

Hi sparklers,
not been on for a while, and after reading the last few posts nice to know the way im feeling im not on my own!! today has been the best day ive had since my last treatment, and guess what - ive got next one tomorrow!!! i honestly didnt expect the TAX to be worse then the FEC - totally different and definetly worse, never felt sooooooo tired in my whole life and that was after the pains wore off, but ive also9 had very sensitive teeth this time which i never had before in my life, also my nails hurt!!!!
I know everyone means well when they say that its nearly all over now and that there are only two left to go, but as you all know that is no consulation at all. Why is it so difficult to explain to people how the SE's feel? you can tell them it hurts, or what hurts, how tired you are etc etc., but it doesnt come anywhere close to explaining how you really feel. because i have been so tired up till today (think im only better cos of starting steroids today) i thought my red blood cells may be low and that i may have a touch of ameania, but ive had blood test today and they6 havent phoned me so must be ok for treatment tomorrow - was really hoping it may have been put off for a few days, no such luck
The way i feel at the moment think i may be in tears when i get to hospital tomorrow.
GOOD LUCK to everyone who is having treatment this week, fingers crossed for all of us that it is a little easier this time round. xxxxxxxx

[SuperSusan]

I also thought that hitting the halfway mark would be a great feeling - knowing I was on countdown etc. Bizzarely enough, I have felt the opposite!! I am going in tomorrow for my 4th session and I am dreading it. Knowing what is coming with the cold cap on the day and then the nausea/vommiting and pure exhaustion for 3+ days is hard to handle. I now want this whole thing to be over; the days and weeks seem to be dragging on endlessly and I AM SO FED UP OF IT ALL. I just cannot wait to get back to a normal routine and life, but I guess we need to just grin and bear it. X

[MrsR2B]

Jelly I know exactly how you feel, I've tried to keep as upbeat as possible throughout apart from a few wobbles at the start but this last week has been really tough and I feel like all I do when I am on my own is cry. everyone keeps telling me I should be feeling positive as I'm over half way but I really don't feel it.
Tax fooled me for the first few days, thought it was gonna be a breeze but since Sunday I feel like I have been hit by a truck! I thought nothing could be worse than fec but I was very wrong. Just want this all to be over now! I can't cope anymore!
If it wasn't for this forum and hearing from others dealing with this rubbish too id feel completely alone in all this x

[Guest user]

well all off for chemo round 5 today. will be much easier now with the picc line in. had a cry last night, im so fed up and its making me sad, ive been so upbeat the whole ride so far but it all seems to be more real the last couple of weeks. my smile is slipping and i want it back. see you all later. xxx

[susanmary]

Hi, popped in from October pumpkins, and glad I did. I LOVE the video Jellymound, Made me smile.
Thank you for posting it
Susan x

[Guest user]

hi sparklers been for picc today and it was nothing like i expected all done with no pain or disscomfort in 15 mins but i have been told that i need to continue having my clexane injections for another 2 months not just the 6 weeks not happy

[Guest user]

Hi
Can only agree with the comments regarding T, I did not have too many se with FEC, but had a nightmare at the hospital on chemo day as I had to go to have ct scan first, they were late, then tried to put in a canula in arm joint and said they could use in chemo ward - I disagreed and asked them to ring ward but they would not, anyway they got it in but could not use it, by then late, had to eat and drink before chemo, so left to go back later. Chemo nurse was not happy with them as they could not use main vein in case it came out of the hole they had made!!! One very annoyed staff nurse on phone later.

They only took two goes to get canula in which is a record for me. When finished back down to CT scan, left hospital oer 6 hours later.

Thursday not bad, just not keeping any food in, coming out other end. Friday the T hit with a vengance and I was in bed for the next few days, as well as losing all my food. By Thursday contacted Cancer Nurse who asked me to come in Friday for bloods and it turned out that I had an infection as well. She said I could stay at home but if my temperature went up to go to A&E.
I am eventually feeling a normal person two weeks later, just in time to go in for next dose.

I have the red and sore hands and feet which is now starting to dry out, can't win

Jen - was good to see you on Sunday and compare notes, have to get together again
Jelly - live the video. When my nephew broke his arm my sister managed to get an arm cover from boots so he could shower and bath without it getting wet.
Keep strong
kim

[Guest user]

Jelly I absolutely love that video. I wish I was doing chemo with you !!!!!! far more entertaining x

[Guest user]

http://www.zazzle.co.uk/cancer+sucks+tshirts

heres a link for cancer sucks t-shirts

[SuperSusan]

Me too Pascal!!! It's so cool....

[Pascal_48]

I want a Cancer Sucks t shirt. Love the video x

[Guest user]

well morning sparklers, getting all geared up for the picc line tomorrow, not looking forward to it, only good thing is the hospital isn't my usual and its along the coast to get there so nice scenery on our drive. dreading the fact that i cant lie in the bath with it love reading and chilling looks like its just gonna be quick showers for the next few weeks.
hugs to all xxx

[jenny12m]

What a fantastic video!! I have posted the YouTube link on my facebook. I never normally post on facebook as some of my facebook friends don't know (like my relatives in Italy), but that video was amazing! I love the bit when she twirls round and the tube gets caught behind her legs - that happens to me when I go to the toilet during chemo! I love her standing on it and pushing down the corridor like it's a supermarket trolley! http://www.youtube.com/watch?v=BaQdwTsVtCY
Phil - I'm on Tamoxifen for 5 years when treatments are over too. My mum (who had breast cancer 26 years ago and was taking Tamoxfien when it was a new drug), is winding me up that I can't have alcohol while taking it - yes you can apparently. My chemo is 3 x FEC and 3 x Tax. 5th treatment next Thursday. What number are you on?
Stellanbraska - bright light was the moon! That did make me laugh.
Spurschick - lovely to meet you today Kim. Look forward to seeing you again soon.

[Guest user]

Jelly love the vid xxx

[Guest user]

sorry doesn't work on here

[Guest user]

http://realplayer.com/ i hope this works, this is a video posted in a facebook group,

[Pascal_48]

Phil
Don't worry, it's taxotere, one of the chemo drugs
x

[PhilBM]

When you guys mention 'Tax' do you mean 'Tamoxifen' - as I've only just found out I'm going to be taking that for five years at the end. Thanks in advance.