Hi All
Thank you for your comments on the ears!
Hamley and Lolly - good to see you back…
Marge - are you getting ready for Thursday’s poisoning?
Lisalouw - i know exactly what you mean on the food front… I am continually buying really healthy food but am drawn to biscuits, chocolate and sweet things…
Maire - Good luck with the RT
Love to all crackers.xxxx
Hi everyone. I wrote a long post this afternoon commenting on most of the above posts but I clicked “Post” and it disappeared … floating in cyberspace somewhere or sitting in the wrong thread. I’m just too knackered to do it again.
I’m day 7 FEC5 and suddenly, out of nowhere, Cybele’s Fatigue Demon has clouted me with a sledgehammer. Up until now I’ve had numerous side effects, the worst being oral thrush and sore raw tongue, and red sore eyes which burn so I find it difficult to read, watch TV or stay long on the computer. Fatigue, however, hasn’t been a problem. I think now I’ve got 5 FECworths all in one go. It’s as much as I can do to drag myself around. I’ve heard other ladies on here talking about fatigue and now I know what they were on about. Do hope it doesn’t last too long.
I’ve got my Rads measure up appointment on day 10 post FEC 6 and if the fatigue gets worse on the next session I’ll never drag myself there. Hope all of you are bearing up best you can.
Caroline, I read your blog tonight and really feel for you. You are so right that the thought of two more or eventually one more chemo does not console you at the time, the thought of going through it again is horrendous and it is very hard to draw any comfort from the fact that it is nearly over when it isn’t actually over. All I can say is that by enduring this horrible treatment you will know that you have done everything you can to beat this hideous disease and even with the very small percentage chance that this vile treatment might be needed, it is still worth it to have the piece of mind that you have done all you can and to not have any regrets in several week’s tme when the chemo nightmare has faded and life starts to grow into its new normal.
I am 6 weeks after my last FEC and finally am getting back to feeling something like the person I thought I was and that will happen for you too, hang on in there.
Take care
Jayne x
Hi Coyotegi, Just read out your post to my OH and he asked if it was me that had written it, as you said nearly word for word what I said to him this morning, cept I also complained about headaches, going to bed with one and waking up with one!. He asked if it made me feel any better reading your post, not really, just how great minds think alike!!! Hold on in there, we WILL get through our ‘only 2 more to go’, but like you, today I was ready to throw in the towel!! lol xxx
So sorry to hear how worn down everyone’s feeling. Most people are 3 or 4 treatments down so every day-nay hour-is a challenge at the moment. I remember my sister telling me she had to climb the stairs on her knees towards the end of her chemo (14 years ago).
Having got off lighty with only 4 chemos I can tell you that the finishing line is a happy place and you will all get here. No consolation at the moment.
I am off to see the chemo nurse tomorrow then its Herceptin3 and radiotherapy on Thursday. I am running nightmare scenarios through my head at the moment: Nurse, “We’ve decided that you would benefit from another couple of chemo treatments”, Me, “Noooooooooooo”
No, I know it’s not going to happen but still worrying.
Looking at my nails, I seem to have wee half moon discolouration towards the base of my nails. I’m kind of proud of this as I think it’s a bit of a ‘war wound’ marking either chemo1 or Taxotere1. Another wee side effect I may be imagining is the inability to ‘hover’ when visiting a public toilet. I can no longer pee straight but seem to have a major spraying issue. Sorry Crackers.
On the plus side I managed a 6 mile walk around Glasgow today. I walked from Partick into the city and out again along Great Western Road. I am truly knackered now but I am that wummin that has been’ hit by a bus’ 4 times since early December.
Going to celebrate with a mug of tea (yipee, I can drink tea now) in the sunny garden. Will be sending positive vibes to you all through internet land.
P.S Cressida-You’ve gone quiet. Hope you’re o.k.
Yeah, Cress - it’s TUESDAY!!! Where the h** are you? please wave…
Well done on the walking, Maire - so good to hear that you are on the upswing again - it gives us all hope… xx
I am still on the downswing, having not yet left the house today, and am still wearing my pajamas. Stomach not quite so bad, though… onwards and upwards.
OK, am going to get dressed and go out now, before it gets dark, inspired by Maire…
I am here (waves). Party on Saturday involved me sitting in the corner and trying not to look too fed up and then leaving at 11pm. I thought I did quite well, but everyone else stayed till 2pm. Then we went to the new forest and stayed in lovely boutique hotel Sunday night. Only slightly spoiled by increasing pain in armpit and Mx site.
Today I waited 2 & half hours to see Onc, who poked me violently in the armpit and ordered CT scan and bone scan, thus scaring the sh*t out of me. The positive side of this is that the chemo can make the nerves in the surgery site become over sensitive, or the radiotherapy might have destroyed my ribs. So, either I have secondary cancer, or I am going to be in ever increasing pain for the rest of the chemo. Then I found I am anaemic, and my blood is generally rubbish so my chemo is delayed by at least a week. So the chemo train has now been delayed just enough to not finish before my birthday at the end of April. I hope none of you are in a hurry to have the end of chemo party.
Sorry I havn’t read your posts properly or Cybele’s blog. Feeling slightly fed up. Looks like I will be eating mainly spinach, weetabix and pain killers (not all at the same time) for the next few months.
xxx
Cress GREAT BIG HUG xxxxxxx don’t worry, we wouldn’t dream of having the party without you
Jayne - thanks xxx I am very much cheered by your example. I know it won’t be long now, just got to hang in there - but I hadn’t anticipated that it would get more and more difficult as I went along. I thought it would get easier towards the end, but in fact it’s getting much worse.
I’m going to be relying very heavily on Lorazepam for FEC5 and FEC6, because I have just got tot te point where I can’t bear it any more, so the sensible thing seems to be to be sedated as much as possible.
Cress, can’t remember if I’ve already told you this, but the Omeprazole has made a BIG difference to my stomach. Still not good, but not nearly so bad as last time.
I am so, so tired of all this. I keep wondering if the people who invented chemo ever tried it themselves. I keep wishing I could inflict it on oncologists. My thoughts are getting rreqlly quite nasty, actually…
Just popping in ladies…I have just finished my 6 EC. I found the 4th one the most difficult…I was incredibly fed up, it certainly didnt get easier although I think knowing what was ahead almost made it worse. However today am 12 days past last chemo and it feels nice. Sorry its not a better description but I still feel tired, achy and know I have more challenges ahead. ( I was diagnosed with bone mets at same time as bc and am just thankful that there are so many treatments available). On a positive my onc was pleased with outcome of chemo so far…shrinking lump…and mentioned the next part of my treatment plan. Hormonals and possibly removal of my lump at some stage after scans. I know its hard to remain positive…over half way is still a long way to go when the chemo makes you feel so ill. Scarily she said I could return to work in 8 weeks! (As much as Id like to this seems too soon…am a deputy head teacher in a primary school.
Anyway, hang in there…the last two went suprisingly faster than I thought they would. As I said it feels nice and I was pleased it was over. I need to get strong and next treatment underway. I chose to hibernate through it as well, I felt ill for about 8/9 days, then the whole low immunity thing and then ok the 3 rd week…so used to have visitors. Another thing I found was that the side effects seemed to last longer…taste buds took longer to return, tiredness seemed worse…but as you all know everyone is different.
I feel I am coming out of hibernation now , it feels strange. On another positive ( I think) my hair has started to grow…It started about the 5th EC…its black and white!!! Resembling that fashionable badger look!! Have also got myself booked onto a Look Good Feel Better session in April. Cyber hugs coming your way…you can do this even though there are those fed up moments.
Mel xx
Maire, thanks for your positive vibes, we need them.
Jayne M, thanks for your message, we need all the encouragement we can get at the moment.
Border Collies, sorry to hear about your SEs, real bummer.
Cybele, I’ve been following your pattern so far, I hope you get a day like my day today because…
Today has been a really good day. I can’t believe I’m saying this, but it’s FEC 4 day 8 and the rotting lump of toxicity in my stomach was gone this morning. I don’t know why, it’s been a constant since FEC 1, just varying degrees of pain/discomfort before. I’ve also been able to taste things like they used to taste, I’ve been pigging out all day. I can only hope that this will continue. I hope this doesn’t mean the chemo isn’t working. I’ve been out for a walk and even went into a couple of clothes shops. I feel almost normal. The only thing I did differently yesterday (which was a bad day) was I ate a melon instead of my usual pineapple (yes, a whole one each day, but I’m so hungry all the time). I’ve eaten another melon today of course, you never know.
Mother Nature (and chemo) saw fit to releave me of the inconvenience of my period this month, just one less burden to bear which I am grateful for.
Hi again. I’ve just noticed that my last post didn’t come up until way after I wrote it, just before we heard from Cress. Sorry if my excitement seems a little out of place at that point, it’s probably something I did wrong.
Cress, it’s good to have you back. Sorry the appointment wasn’t great, bug hug. I’m looking forward to a party when we can all come along and celebrate, perhaps you should delay your birthday just for this year and we’ll celebrate that at the same time. My birthday was horrible this year and I remember Cybeles was too. Perhaps we could have a joint belated birthday cake in the shape of a perfect boob, then eat the lot! We can all start our apres chemo diets after that date.
Buffy, thanks for your message, it’s good to hear from people on the other side of this awful treatment. I’ve got an appointment for LGFB but it’s not until June because they are so booked up, but I’m looking forward to it.
Sorry everybody is suffering with such awful SE. It just doesn’t seem fair for you all. I feel quite guilty as I only have one more Tax which is Monday. I have been really well on Tax and only usually have a couple of bad days each cycle so Tax is not to be feared for everyone. I don’t post very often as feel quite guilty as think everybody else is having my SE.
Wendy x x
Thanks everyone for your support. I think the worst shock was how weepy i was. so far havenot cried but couldnt stop yesterday to the point i phoned my sister to come round…unheard off in the past! mind she proved up to form, critisied my son for moving away for work ( hes 22) because he should be looking after me ( no thats not hisjob) and when i said i hadnt eaten anything all day said it woyldnt hurt because i had wieght to spare! ( need to point out she is 5,4" and size 22!) gave me some perspective!!!
Marie- that raised a smile txs.
can anything be done about sore fingers? do i need to tell anyone?
finding it difficult to take painkillers when not eatting , is there ANYTHING that wont taste like s**t?
and i seem to have segued nicely from 2 days constipation to 2 days diahorrea, IBS not helping. any suggestions welcome.
and as someone said, its knowing just how bad I am going to feel 2 more times that is dragging me down. hohum, onwards and upwards
Maire - thanks for saying about the spraying! I cant hover anymore either. I have to line the loo seat with paper at the hospital! v odd. do you think its something to do withthe free brazilian?
Coyotegi - i sobbed through tax 3. Before during after.
Im now day 6 post fec1 not sure how i feel - cold cold cold and i ache. is that normal?
QD
Hi all,
Long story short: Chemo nurse told me today that it’s the steroids that cause stomach pains/heartburn/spasms because they basically ‘destroy the lining of your stomach’. So chemo has an evil twin. Sigh!
maire - that’s what the acute oncology nurse told me 2 weeks ago, when I was in A&E with the neutropenia…at her recommendation, I am now taking Omeprazole, which has made it considerably less bad, this cycle,
BUTWHY THE HELL DON’T THE ONCOLOGISTS TELL US ABOUT THIS AND ISSUE OMEPRAZOLE UP FRONT AS STANDARD ISSUE?
WHY DID I HAVE TO GO THROUGH 3 CYCLES OF EXTREME TOXICITY IN MY STOMACH SO BAD I WANTED TO TEAR OUT MY STOMACH WITH MY BARE HANDS?
Sorry, I am really mad about this, about all of it. Maybe everybody else’s oncologists did tell them. It just makes me so furious that we’re re-inventing the wheel here, when it really shouldn’t be necessary. I spent ages going through all the old chemo threads trying to prepare myserlf for whatever side effects might come up, but I completely missed this.
And when I got the stomach toxicity it was so bad I never connected it with ‘indigestion’. Frankly, the state I’m in it’s amzing I can get a coherent sentence out at all, much less work out which side effects come from which drugs.
It all just makes me mad.
Necessary suffering is one thing, unecessary suffering is just un-f***ing-forgivable. To coin a phrase…
Cybele-My chemo nurse gave me it when I moved onto taxotere but not with fec-maybe because they upped the steroids with taxotere. Thank God I got it because the stomach pains-when I’ve missed a dose have been like nothing I’ve ever experienced before-waves and waves of pain. In fact she told me to start taking them whether I got pains or not and to keep on taking them now even though my chemo has finished.
Don’t understand why some people have to get to breaking point before this medication is offered.
Cybele, Maire, I think it’s just the luck of the draw as to where you are receiving your treatment. I’m on 6xFEC and I was given Omprazole in my very first goody bag of meds on the first FEC. The dose was subsequently upped when I was still having problems.
On another note - I only have steroids in my infusion, I don’t take any in tablet form as they give me hallucinations, so there must be something else in the “poison” that attacks the stomach lining. I automatically receive 3 bottles of Cordysll mouthwash, Nystatin or Fluconazole for oral thrush, eye drops, and Omprazole 40 mg plus domperidon and cyclizine for sickness plus Neulasta each time I go. I see my oncologist just before each FEC and she asks me what problems I’m having and medicates accordingly. I can see from what others say that I’ve been very fortunate.
Just to let you know, for FEC i was given 5 days post treatment for Omprazole as standard and the same for T as it is the Chemo that destroys the gut lining. I was also advised that if i continue to need ibuprofen pain releif that i need to continue to take it otherwise ill get ulcers… so i just got a massive supply (free) from the GP.
I get 3 x emend 1 for 1 hour before chemo and then the 2 days after
I get neulaster injection x 1 the day after which so far seems to have worked.
and the lovely steroids for 3 days post fec (as well as IV) and now on T I have to take the day before (today yikes!!!)
Think that’s it…
I am taking amtriptoline nightly for back spasms (from GP) and zopiclone when on steroids to make me sleep.
I went to the GP prior to chemo starting and just got a load of eye drops, corsodyl, pain killers and just ring up for repeat prescription as and when.