So nice to read some good news on here! Glad you’re both doing ok, how fab that your scan results were positive!
I too had a CT scan last week as I’ve had 3 lots of chemo, I get the results tomorrow so fingers crossed. I’m fairly sure they’ll be ok as I’ve been feeling really well these last few days. I had a couple of lumps on my head which have completely gone and I’ve just about stopped coughing, it was driving me mad before so I think something good is happening. If all’s ok it’s ‘ting ting’ round 4 on wednesday!
I’ve not needed a transfusion, I’m taking iron even though I was told it won’t help and feel ok I have more energy than before.
I’m in Sheffield, I have my treatment at Weston Park so we are pretty close I think.
It’s great to read your updates on here, so nice to know you 2 are going through the same thing, well not nice, I wouldn’t wish this on anyone but you know what I mean!
Hi there… just wanted to wish you well for your scan results tomorrow… i will keep everything crossed for you… lets hope the way you feel is a good indicator on your results…
Please let us know how you get on… i will be thinking of you…
only me left then to find out about mine when i eventually have my scan… they say these things come in 3’s… well… i hope so!
Just wondered if you had any news Polly on your scan results??.. do lets us know… i hope all is well…
I didnt get my chemo on tuesday as my platelets were only 85. they have to be above 100 for treatment… even though i have been getting GCSF injections to boost my bloods…
oh well… glad of the break from chemo but worried at the same time… need to fight this evil disease!
Hi Jak,
Thanks for checking up on me. The scan results were a bit mixed. The mets in my lungs, chest lymph nodes, liver and kidneys have all shrunk and there are no new ones, but there are some new ones in the bones of my back which I suppose explains the back ache.
Typically my consultant was away this week and I heard this from a registrar I haven’t met before. Overall it seems positive as i think the organs are the most crucial to be improving. Perhaps I’ll be able to have some more radio on my back, this really helped before.
I had chemo yesterday, my bloods have picked up so the battle continues. I seem to be really red in the face today but am feeeling ok. The girls stayed with my Mum last night so I’m enjoying sitting in bed with the laptop.
I’m sorry your blood still not strong enough for the chemo, try to enjoy the break and do something nice for yourself. It’s hard but I know a week off doesn’t make any difference in the long run.
Polly, I know that your results were mixed but as the treatment is working on your major organs thats brilliant news.
I will keep my fingers crossed that they allow the rads to your back. I know there is nothing worse and miserable than backache.
I hope you had a celebration drink or gave yourself a a bit of a treat after getting the good results?
Here’s to further shrinkage eh?! X
I had my chemo on weds and too have the hot red flushed cheeks. They are so red and tight that it feels like the blood vessels are gonna burst! A bit painful to touch too. Ah well, at least its making me look very very healthy!! :o)
Jackie,
Im sorry that you didnt get your chemo again, its really giving your platelets a good battering isnt it?
Its probably the Gem thats causing the low platelets isnt it? Im sure the Taxol will be doing you some good so try not to worry.
When are you due your next chemo? I think we have ours about the same time but yours is a day before mine?
(I had my Tax/Gem on weds and am due my Gem next weds)
Have you been given any dates yet for your scan?
I am keeping everything that I can possibly cross crossed for you.
Hi Julie,
The redness has worn off, hope yours has too. Feeling bit yuck with rubbish taste but overall not bad, had a walk with the dogs this morning.
Do you get really bloated belly too? I am reduced to wearing tracky bottoms at all times, comfy but I can’t believe how big I look sometimes.
Just thought i would let you know i’m feeling fine thanks since you were asking and catch up…
Polly your results were great, like Julie said, it seems to be working on the organs and thats the most crucial, I do hope they will give you some rads to your back. i have back ache at the minute, mine is at the very bottom, where is yours? anyway… going back to the rads… I had some to my sternum for bone mets and it worked wonders…persist and tell them how much pain you are in so you get some.
Julie - yes, i think it is the Gem that is knocking my platelets down, i am due to go back to see the doc on the 4th Sept and then have my chemo on the following tuesday (9th), my dates are all out now… i havent got a date yet for my scan because they wanted to do 3 full cycles and i havent had that yet. I suppose they will organise one when i go next week to see the Doc.
I think we are all getting the red face with this regime… i think it may be steroid related though… dexamethasone always makes my face red… looks like ive sat out in the sun for too long… as for the bloated stomach… i cannot fit in any of my clothes… i live in tracky bottoms around the house so your not alone there Polly. I look about 6 months pregnant some days… ha ha
well best go… hope your ok and heres to further shrinkage…
Hi
Now I’m back from my holidays and short breaks thought I’d join in again even though just having taxol and not the gem. (Had gem with carboplatin).
I always go very red with steroids and my face puffs up and goes all hairy but I suppose now I’ve had my second weekly taxol, this won’t be a problem soon!!!
I used to go very red when I had taxotere and the taxol seems to do the same but to a lesser extent as having smaller dose.
Polly - it’s good news about your major organs and definately push for rads to your back. I’ve had rads to my back and it is only now that I realise how much pain I was continually in. Rads does make the pain temporarily worse - to the extent I wondered if I’d done the right thing but 3 months down the line it was really worth it. I have a very interesting coloured back from my various rads to various parts of my back but who cares- if it doesn’t hurt, I’m not bothered.
Jakki - so sorry to hear you didn’t get your treatment again. It must b so frustrating. As far as I’m aware the GCSF only works on the wbc and not the platelets - JaneRA had low platelets on gem - it seems to be a common and frustrating problem. Sorry to hear your stomach is still so bloated - for some reason I thought it had got a bit better - my memory is so poor.
Well after feeling so ill and it spoiling my holiday after my first weeky taxol, I found out on thursday that they had given me 9% too higher dose as the reg used an old weight and my old height. I’ve shrunk by 3 cm due to the bony ones in the vertebra - I kept thinking everybody looked taller and now I know they are!!
I feel so much better this time after getting the correct dose. I’ve been out and about and not had the bad stomach cramps or diarrhoea. Know as time goes on, the weekly doses will catch up with me but what a relief to feel I can get out of bed and be vaguely human. I only managed 1 good day in the week after I had the first dose and was glad I was away so missed the second dose as it meant I could go away and meet my family and have a good time.
Will write and complain as if this overdose had been on the 3 weekly dose goodness knows what sort of problem it could have caused but being weekly meant it was within a safe limit. The reg felt the lump under my arm was smaller but my breathing and swallowing are no better but the liver pain is better and the tummy swelling although my liver function tests and bilirubin are still not normal. I didn’t dare ask how much they were out by but for the first time in about a year I’m not anaemic.
All the best everyone
Kate
Hi Kate,
It’s good to read your message, I’m glad you’ve been on holiday it sounds like you’ve had to put up with being really poorly. How shocking that they got your dose wrong, I can’t believe it!
I had some rads on my back before which really helped, I’m just a bit worried that I’m aching in my shoulders and hips at the moment. Trying not to worry about it I will wait and mention it when I see the consultant a week on tuesday, I’ve got the gem top up on weds this week, I’d rather not go to the hospital any more than I have to.
I can hardly believe it’s the last day of the school hols today, I think the girls have actually been busier than usual as I’ve been a bit more organised as I was so worried they would miss out on having fun with me being poorly. They go into year 3 tomorrow, it seems so grown up, they’ll be 8 in October, blimey i wish they didn’t have this to deal with.
Hi,
I have signed up for the event on living with secondaries in Sheffield in November, just wondered if any of you will be able to go, it would be great to meet up there and I think it will be helpful.
Hope you’re ok
xx
Had my chemo yesterday and i feel ok today apart from i have the red glow to my face, also over my chest and arms today! they are cutting my dose this time as they said its affecting my bloods too much and want me to be able to continue with the chemo so they have no choice but to cut it to reduce the dose. Instead of my having 3 weeeks on and 1 week off, i will only get 2 weeks of chemo and 1 week off.
I asked about my scan and they said i wont get one until the end of treatment unless my LFT’s are showing abnormal to warrant one.
My bloods were still quite low this week but ok for chemo and the doc said my LFT was showing as normal so he was very pleased and said it appears that the chemo is working.
polly i havent seen the advertisement for the secondaries event - i’ll have a look and see what i think…
Julie/ kate - hope you are both ok…
Polly… i notice you mention you have girls who will be 8 soon… have you twins?? Also you have mentioned dogs on a previous reply… what type have you got and whats thier names?? I have a dog too! I love him to bits - he’s a chocolate labrador called Thornton.
Right i’m off to bed… to get myself comfy for Desperate Housewives…
Hi Jak,
How great that you got your chemo! I do hope your bloods pick up soon. I have 2 weeks on and 1 week off, 3 weeks on must have been quite tough, I do hope the new regime is ok for you.
About the secondaries day there is a ‘sticky’ thread at the top of the forum which has the email address and phone number. I really fancy going but when Melanie who is organising it said she couldn’t guarantee there will be any other younger women I thought it might be a bit disheartening to go if everyone’s going to be a lot older than me.
I do have twin girls. They are pretty gorgeous. They do make me laugh with the funny things they come out with. Do you go on facebook? I have some pictures on there.
As for dogs, Thornton sounds lovely. Polly is a black and tan cavalier king charles spaniel and Daisy is mostly collie. Dogs are great for forcing you to have a bit of fresh air and exercise when you least feel like it don’t you think?
Jak - glad you got your chemo and they’ve cut the dose.
My bloods all low this week and he didn’t really want me too have chemo this week. I’d rather have it today which I did as on the 2oth we are going to a motor racing event and would like to feel well for that so happy to mss next week’s dose out. Iron levels dropped from 110 to 98 and blood protein levels from 31 to 28. Should be at least 35 and have been hovering around 31 -33 for last 6 months but worse of all lost 5kg in a week. Knew I had as my belt is now on 5th hole instead of 3rd. Got to keep a food cchart and have more fortisips so keep reminding/nagging me. Getting scared now about my protein levels as it means my body is now eating itself so got to force more food down.
Wold have liked a dog but as we both worked felt it wasn’t fair and the house is too small for our twins and little boy anyway. My twins are boy/girl and are 11. Youngest son is 8.
I won’t be going to event in Sheffield - too far away but quite tempting to sign up if you all going and then I could stay with my friend who lives that way!!
Exhausted from chemo today and the piriton.
Love to you all
Kate
Hi Kate,
You are incredibly brave, definitely the right thing to make the chemo fit round your events, it sounds like you’ve got your priorities right! The macmillan nurse got me a prescription for fortisips but amazingly I seem to be putting on weight during chemo. I guess because my eating has stayed fine, probably less healthy than before, but I’m fairly inactive.
As for the event in Sheffield, I know they provide hotel accomodation for anyone from out of town. I went to one of the events for younger women when I had chemo the first time, the hotel was lovely and the whole thing was really well run. I do hope I can persuade some of you to come!
Hi there! great to see you posting, glad you were able to tell them when you wanted your chemo, you cant let your treatment get in the way of things you really want to do. Have you drank any fortisips today? I will keep nagging you… some of them are not very nice are they? I have also had prescriptions for Fortisips in the past too. I had the milkshakes but i know they do soups too and juices. Make sure you try and get as many as you can - even if you only drink half of one! I lost a lot of weight a few months back before my liver secondaries were diagnosed but now i am with you Polly - i am putting on weight with this chemo… its getting me down now… i wouldnt say I am eating more in fact if anything - i’m eating less. Your right polly that dogs are a good way of forcing you out in the fresh air but no fun when its cold and snowing eh? Kate, i know the feeling of exhaustion when you have just had your treatment and piriton - that makes me sleep most of the day when they give it to me.
I will work out my treatment and see if i can make the secondaries event in November, would be good to all meet. How old are we all then? hope you dont mind me asking… I am 34, was diagnosed at 31.
My red face has gone today but i have a terrible red chest chest that has spread across to my other breast and into my armpit, it is worrying me as i am also in a lot of pain today, i have an area on my spine that feels like its bruised and its very painful. Ive got my heatpad on it right now and i have taken my oramorph and other painkillers but they dont seem to be working. My tummy is really tender, My legs are like lead weights and my skin on them feels stretched - sounds weird but thats what it feels like… I am hoping that its just my GCSF injection that i am having after chemo…havent felt like this before though…
Julie - are you ok?? you havent posted on here since the end of August, do let us know how you are doing…
Well going to go now and have something to eat… Kate - dont forget - drink your fortisips!!!
Take Care and hope we can meet later on in the year eh?
There has been a few postings on here for me to read since I last came on so I cant make many comments as there is a fair bit to read & remember! Im sorry!
As long as everyone is doing ok???
I was not very last week so ended up in hospital last Friday night. Had a temp of 38.2, was very headachey, shivery and just ached all over. It was gone 10pm when doc took my blood and said results would be a few hours so I was kept in to start intravenous antibiotics “just in case”.
When bloods came back I wasnt neutrapenic & my temp had gone down so I was allowed home Sat night (I say night as I had waited all day for the doc to do his rounds…he didnt come round til 8.30PM!!)
Doc has worried me a bit tho… As I was leaving he muttered something about my blood results showed Creatinine and its nothing to worry about just drink plenty of water. I have googled it and it says that if Creatinine is found in your blood it means that your kidneys are not functioning properly. Well that has scared the bejeezus out of me…
Im seeing my Onc on Tues so will see if he says anything about my bloods.
Jackie, im 38 and was diagnosed last year (37) with my primary BC.
Im on facebook and my profile pic is of Garfield if anyone wants to find me?? :o)
If you look for Breast Buddies most of us are on there…
I have booked a place at Sheffield in Nov and I also have my treatment at Weston Park. Hope I’m not too old for you (55!). Melanie told me that they have to have a minimum of 5 to run the course and 12 is maximum.
Jakki - I only see the result on the screen for my blood protein or albumin levels. I think it comes under liver function section. It should be 35 or over but if got liver problems then often lower as can’t digest food properly. He was concerned as I’d lost 5kg in week and lost 5 points in albumin and getting anaemic again.
BTW everyone since having 4th taxol on thursday which he did n’t want to give me - I can swallow again. Been enjoying lasagne, risotto, cheese and biscuits and a whole apple and chocolate hobnobs!!! What a chnage from pureed baby food and soup. Hope i can enjoy a meal out now. Also been better since stopped lansprazole and gone back on omeprazole for stomach protection. Was out till 1am at friends house this morning celebrating and only had chemo thursday so hope this swallowing stays until next thursday and blood levels improve now I can eat better. Was secretly hoping to miss next weeks taxol as out for day with hubby on saturday but now can swallow want to continue with weekly and hope breathing will improve.
.Was it here that someone was concerned about creatine levels - mine have been raised for quite a while but are higher when dehydrated. Usually get blood test by district nurse first thing in morning and not had chance to drink. This week I had a later blood test and drank well and creatine was normal so drink more- non alcohlic of course and see what happens.
If Sheffield is for secondaries then it is for any age but younger women the cut off is 45 I think could be younger. Quite tempted but did course before so shouldn’t really go again if it stops others from going but would love to meet you all.
I am back (Don’t know if you remember me Daisypink!)
I think I am starting the chemo that this thread is called. I am having it two weeks on and one week off.
I have got mets in abdominal lymph glands and its caught my pancreas but they are not sure if there is a tumour in my pancreas or not yet as the CT scan is too fuzzy!!! Apparently I am a weid one and very unusual. Only me.
Been told now , no cure just try and see if anything can keep it under control.
The worst thing is they thought I had gallstones, as I couldn’t tolerate fat. I still can’t and I just want to comfort eat so quite weak at moment.
Just want to see my 3 year old start school next year and I will be happy. Not much to ask for I don’t think.