Thanks Amber. (and Judy)
Yes, number 5 tomorrow assuming bloods are OK. The district nurse took them this morning and no phone call, so I am assuming they are fine. I’ve had my 8 steroids today but they never seem to affect me, either good or bad. I don’t get the highs and I don’t get the lows. All I get is a red ring round my face! My chemo nurse always says she never needs to ask me if I’ve taken them because of my face! I see the onc at 9-20 followed by chemo and herceptin at 10-20, hopefully home for a late lunch about 2pm. My infusions take 30 minutes for the herceptin and an hour each for the Tax and Carboplatin. Then a quick swill with saline. My dedicated chemo nurse is on holiday this week so I will be looked after by the unit Sister. It’s only a small unit with 9 chairs and is very cosy and friendly. The same ladies seem to be there most weeks so we have some lovely chats. My daughter comes with me and we actually enjoy it! Is that weid or what?
Good luck to everyone being done this week, Linda xxx
Hi Ladies - enjoying the last few days of freedom before tax 2 on Friday. Feeling tired but otherwise ok.
I dont usually see my Onc between chemo, just the nurses for bloods etc however, I have an app with Onc on Weds to ask about scans, to check for spread, post treatment. As I ‘only’ had 3 Lymph nodes with cancer apparently i don’t qualify for scans however, I am prepared to go into battle with the Onc as I want to put my mind at ease (at least for the short term) My argument is that i had all nodes removed, a total of 13 - 3 of which had cancer cells. If I had 4 affected I would qualify for scans. Other people with say 20 nodes and 4 with cancer do qualify for scans (4 seems to be the magic number in my area). When you look at percentage nodes impacted instead of number then 3 from 13 is higher. As everyone has a different number of lymph nodes, surely the percentage should be taken into account?
Anyway - positive for today is that I appear to have my fight back (for now at least)! If Onc says no then I will use my private insurance to get scans however, I intend to battle on a matter of principle as other people without insurance to fall back on are getting a rough deal as far as I am concerned . (that’s of course assuming they want scans which I appreciate not everyone will)
Off my high horse now
Good luck Amber, Sandy, Linda for tomorrow Lori / Lynn - i had really sore throat / swollen glands a few days after tax. Be sure to have soluble pain killers handy (or at least capsules / oblong tabs) as I got to the point that I couldn’t swallow round tabs as throat was so sore - I posted at the time about my meltdown in the chemist when the lady asked me if I had tried halving the tablets!!
Great news Mel A
Angie / Judy - hope you’re coming through nasty Tax s/e’s ok - they’re horrid!
Wishing everyone a good night’s sleep - (even those on steroids!)
Pauline xx
Pauline,
I’m with you on the scans front. No way will I get any because I only had 3 sentinel nodes removed, all clear. When the pathologist looked at them there were actually 4 nodes as one was a “twin”. No vascular invasion either, so no chance of any further tests other than annual mammograms. However, I have read that sometimes nasties drain through the neck lymph nodes rather than the underarm ones, so what is that all about, and why don’t we have them tested?
Good luck with your battle. OH is going to make enquiries about having a scan privately, but we have no insurance since we retired and they may be outrageously expensive.
thanks Linda - think seeing Onc depends on location (as with most things BC related!) as I’m in Glasgow and we have a large specialist cancer hospital with specialist cancer nurses I think they need to spread the load so the nurses do the sessions in between cycles unless you specifically ask to see the Onc (which I have on this occassion) I’ll keep you posted on the scans!
Pauline xx
Hi Pauline agree with you for scans. I was told today 4/25 positive so have to have scans which scare me but I know need doing. Bc nurse did say bit like a ladder 4 in 21 to go so I see your point if less glands. If your worried I think they should just book you in, peace of mind could help you so much to fight this.
I’m a staff nurse but none of this is my area but I’m used to patients requesting tests drs don’t want to do and they normally get them and then can move on so don’t give in. Your as important as any other patient x good luck
Hi Pauline agree with you for scans. I was told today 4/25 positive so have to have scans which scare me but I know need doing. Bc nurse did say bit like a ladder 4 in 21 to go so I see your point if less glands. If your worried I think they should just book you in, peace of mind could help you so much to fight this.
I’m a staff nurse but none of this is my area but I’m used to patients requesting tests drs don’t want to do and they normally get them and then can move on so don’t give in. Your as important as any other patient x good luck
Lori my cheeks are hot and red today but temperature us fine. My hands are also really itchy. I’m assuming its an SE but watching my temp.
Good look with the chemo this week ladies. You’ll soon be another one down and 1 step nearer to the finish line. What will we call our rad group?
Pauline I hope you get your scans.
Pauline I saw Dr about the same thing last week. I had 14 nodes removed one with cancer. Said I did not need it it would do more harm than good, says could not stop me getting a scan privately but would not recommend it. i was the same as you peace of mind because I need to know. She said even if clear you would still worry and offered me counselling. Good luck let us know how it goes. X
Cycle 4 docetaxol day 12
mel, I’ve had really itchy hands for the last week but there’s a rash there which I had on my neck, my neck seems to have cleared now but I still have the itchy hands. I was given some antiseptic cream in hospital for it but it doesn’t help. I find piriton stops the itch.
it doesn’t seem fair Pauline, that you want further scans but don’t meet there criteria. What scan is it that you want doing? I see my oncologist every ten days after my chemo so he can measure the tumour.
ive still got the aches and pains in my legs but for the last day or so I’ve also got what seems to be hayfever, with runny sore eyes and nose. I don’t normally get hayfever but I think I had this for a day or two last cycle, has anyone else got this?
Good luck today Linda, sandy and Amber x
hi girls
well ! , different worries today it seems. good job someones thinking ( pauline ) out our questions to be answered, i never thought of this node problem although it has worried me about the possibility of spread right from the start and thats why i wanted as much treatment as i could get, to make sure its getting everywhere, regardless of how ill it makes me feel - mmmm greedychops!
i had 8 of 14 nodes affected which now sounds like a lot!!! i also have an auntie who had it go to the ones in her neck ( lola ), and that was discovered after her treatment had finished,she had to start new treatment (surgery & rads) to get them removed, shes fine - that was 15 years ago, so i’m going to clarify this with my onc next week (only 2nd time ive seen her) i might start my list of questions now. judy - ive got the same as you, runny nose, cold symptoms, a big headache. i think its the tax, its coming and going as and when. if i bend down it pours so i have to be careful what i’m doing or i look like a 2year old with the snots!
i would have thought they would do a full body scan to see that all the bad cells are gone after treatment, but maybe i’m just wishful thinking. what questions are you all asking your mighty onc’s then, i’m not sure where to start but i see her so little i need to get them all in a week on weds.
Are we all having rads?, ive got 3 weeks coming up in september, international city of inverness here i come the light at the end of my very long tunnel.
angie xx
Angie, I think that’s why I see my oncologist mid cycle so he can measure the tumour with is little plastic ruler just to make sure the treatment is working. I know it is, before I had any treatment my breast top half of the breast was hard and was going m&s-sharpen but now it’s just back to normal. The oncologist said yesterday he will know make me an appointment to see the surgeon so that as soon as I’m over the chemo he can book me in for the mastectomy, then once that’s done sort out the radiation then on to tamoxifen. Don’t know yet how many nodes are effected till I have surgery so I don’t know if that will be it or if there will be any more scans.
i did mention the new Chinese treatment to the oncologist and he said compared to radiotherapy there were more burns with the PDT, Chinese treatment than there was with radiotherapy, and that at present he thought the results were better with radiotherapy.
Right, I’ve walked the dog, stuffed my face with toast and I’m ready for another sleep now, I will be glad when this TAX is done with, it doesn’t take much to turn me into a zombie.
judy
thats good, its obviously working well, so if its doing that with you, its obviously doing that with all of us, nice to know its that effective isnt it, a bit of faith, thanks.
i had mastectomy first, then its chemo and rads. the surgeon said after the op that ‘as of now there is no cancer left’ which is a brave statement. then i got the call for chemo, so its the ‘just in case’ bit that worries me now, what if a wee bit got away? i expect that its all jsut a precaution, preventative treatment but it doesnt stop that niggling worry thaat some might have got away. thats why i think they shoul just check it out. how simple would that be. i expect we’re all going to have these worries for years to come.
angie xx
Amgie when I spoke to the chemo nurse while I was having the first TAX she said that the FEC and and Docetaxol are the gold standard treatment, she said they used to use just the FEC, with the Docetaxol used if the Cancer came back, but they discovered that by using both it really kicks the cancers butt. she said we don’t want it to come back which is why we use both. I asked if its shrunk the cancer so well, why do they do mastectomy but she said its just down to the type of cancer I have with it being invasive lobular and not showing on any of the scans. But she said with this chemo if there is any tiny cancer cells that are growing elsewhere this chemo will get them. I must say I do feel very confident that the chemo will get it all, judging by how its working on the tumour and how it’s shrunk it so far.
yea judy, i have to say that your treatment working so well has made me feel better too, you have an actual ‘marker’ that you can see, you must be very pleased and relieved. its amazing isnt it.
It is Angie, I feel really confident that the chemo will do the trick with the surgery and Rads just being used as a precaution, just to make sure, but I’m positive that its the chemo that will sort it out. I think that’s why I don’t mind so much with how ill I feel cos I know it’s sorting out the cancer which is the main thing. Especially when the cancer hasn’t shown up on any scans, not on the MRI or the ultrasound. And with not being cut open yet, at first I was thinking well surely you should just cut me open and get it out but with how well it’s shrinking the tumour at least I feel confident that any little bits that they may not see with surgery are been sorted with chemo.
Angie / Judy - I have the itchy hands also, will try piritin - thanks! I also have itchy and weepy eyes, when I wake in the morning my eyes are usually glued together with Gunk!! Not sure what to do about that but will ask the nurse tomorrow when getting bloods done! Angie - just want the ususal scans to check for spread to bones liver etc (not sure of techy terms for them) I realise these may not detect tiny microcells but at least they will show any obvious spread which can start to be treated asap. I would have thought with yuor node involvement you will def be getting scans. As for knowing ‘they got it all’ my Onc told me at the start they will never know as if it has spread a tiny cell could be lurking somewhere in your body and you will only know about it once it presents itself i.e. you feel pain somewhere or a lump. My understanding is it’s only as each year goes by, with no secondary cancers presenting, the risk reduces. That’s why when our well meaning family and frinds say ’ oh well your treatment is nearly finished and then it will be all over’ or something similar, I just smile through gritted teeth!
My rads start on 27 August for nineteen zaps! Lynn - your Onc sounds like a right tool (sorry!), how can getting a scan do mre harm than good? Tell me it’s not Dr Barrett???
Thanks Lols - I get the ladder thing but think it’s a fob off tactic. If the cancer cells went sequntially through the nodes only people with all nodes affected would see any spread and we know that is not the case! Nice to hear from a professional on the matter
Going out for lunch today with hubby - Indian tapas - yum!! (sqeezing one in before the taste buds go next week!)
Takle care Angels, Pauline xx
Angie / Judy - I was writing my last post when you were ‘talking’ - hope I dont sound negative, i’m absolutely not and clearly judy, chemo is doing a great job on your tumour as I’m sure it is with all of us. Unfortunately the reality is that this horrid cancer does spread albeit in the minority of cases xx
Pauline
my thoughts exactly, yes it is a wee bit negative if you’ve got a lot of dodgy nodes but unfortunately its true.
For me, especially with the lymph node involvement, well it just freaks me out if i think too much about it, which is why i think they should have a good look round after the treatment has done, to check if its worked, instead of allowing it to start up again to a detectable size.
quite right too, when my surgeon said that it ‘was gone’ i thought it was a little bit optimistic, because if it were gone, why all the other treatments. i think sometimes its just a bit of a morale boosting conversation, which i never believed anyway, and should they even be allowed to say that to people.
i think once you enter the world of this disease, you dont leave, its with you all the time, always watching and waiting. my aunt had all this, lymph nodes under arm, then later in her neck and a bit more over 20 years ago, she could be one of us no problem, its still so fresh and a part of her life. she’s fine by the way, keeps ringing me with advice.
i hope that doesnt sound too negative either, but it is a reality we’re coming up to now as we get to the last doses, what next? years of watching out for bits to show up me thinks.
angie xx
Hi all
just been reading your conversation so thought I’d add in. I see onc every cycle. I didn’t have any nodes affected, which was great until they told me there was vascular invasion. It doesn’t have to spread through the lymph nodes, it can spread through your vascular (blood) system- hence chemo for me. I wasn’t initially offered any scans. The chemo is adjuvant therapy for me- this means it is aimed at mopping up any possible cells- but this is purely to increase my statistical chance of it not coming back. So Angie what I would ask onc, and have, is for him/her to go through the computer programme they use to decide your individual prognosis- that is, to be blunt, your chance of survival. It’s a %- so without chemo my chance of still being here in 10 years was 70%, and with chemo my chance is 82%. There’s no way of knowing if I’m going to be in the lucky 82% or the unlucky 18%- even if you have all the scans and they’re all clear, they still can’t tell you. I suppose that’s the next thing for research- being able to identify the people it comes back for.
Hope that didn’t sound too depressing? For me , I like to know these things!
In the end I had a bone scan, because my hip was aching, and I told onc I was worrying about it. I thought I’d have to fight for it, but he just sent me straight away and getting clear results was a boost, but I don’t think they’re always conclusive- which is why they don’t always help.
I’ve got a friend who has lived with breast cancer for years and she said the best thing to do was try to get on a trial or research project because then you get scanned /monitored all the time!
Mel xx
so i have to be careful what i’m doing or i look like a 2year old with the snots!
the light at the end of my very long tunnel.