Hi all reporting in after my chat with the onc.
I asked has this one worked as i have had less side affects he said thats good looks as if i got the dose right so we will go for 80% fec if thats okay with you. Wow he asked my permission.
Tummy problems he is not surprised it goes one way or the other.
Heart burn has been bad this time so i can have 20mg omerprazol in the morning and 40mg at night.
Said i should wear the stockings that the dvt clinic gave me if i am not mobile for a few days after my fec.
Then the bomb shell pachitaxel every week for 9 weeks. i thought it was either 3 or 6 weeks.
okay then i asked him is there a blood test to find cancer cells he said no he seemed adimant thaty at the moment there is not one..
He does feel that the treatment i am on will have a positive result. I am happy with that but i wanted to know what happens when all the treatment is over he said he will see me every 3 months. So i asked do i have to wait till i find another lump he said no i will get other signs like tired not eating jaundiice. i think he will elaberate more when the time comes. He said they will not scan me straight after the treatment so just be positive its doing its job.
I feel good after speaking to him he has away with him i feel safe in his hands.
So my wobble over the last few days has gone and I AM GOUNG TO BEAT THIS.
Thank you Cath for the link, that pulled the research I have waded through in one spot, all really positive and surprisingly research seems further advanced in terms of trials than I thought. Will go back to that regularly I think.
Hope all is going well for everyone else today and horseslave hope you are coming up for air now. Love to all. Hbunny xx
Ahhhhhhhhhh Karen lets see what mine has to say. Cant wait to see him as when i have seen him while i am in hospital its shorter than when he is in his office. I have me boxing gloves on so i can come out fighting for my last fec next week. I like junk food too but i also like soft fruit when i cant taste anything.
See i new it WE ARE ALL COMING OUT FIGHTING this is the best site ever. I feel much better today after reading your comments and armed with my questions [i am going to chew his ears of] he wont get a word in edge ways today.
To my great chemo buddies have a good day and someone is feeling really poorly [sorry cant remember your name] chin up and stay in bed today and give your self a big hug from me.
update you all later..
Hi girls, somtimes you just have to hit a low day to get back up there and I for one am feeling more positive again. Reading a book I ordered yesterday "surviving tnbc breast cancer", although American has hit every emotion from day one and is very positive, feels like a parallel journey and written by a survivor, definitely recommend it and reworks the negatives into positives.
Still googling however, but avoiding the research sites, just the help yourself sites. I have to know everything about everything as drs in this country are far too dismissive of anything not chemically based. My onc didn't even know what purpose sulfur had in the body so couldn't say if it was safe to take or not. I'm saving it for my back up With a high ph diet and hoping he might have more insight re vit d!
Onwards and upwards, and remember tnbc is beaten by more than 80% and other types better still. It's all in our favour!
Love to all. Hbunny xx
Good morning July ladies
I am sorry to hear that some ladies are feeling very low and are googling!! I cant do it myself I am just too scared of what I may see, ( I think it is called burying your head in the sand) lol.
I understand your concerns though, it does feel strange when the end of chemo is in site, wondering if it is actually doing anything!!??!!
I am not TNBC but I am HER2 and although I will have Herceptin for 12 months it is still a very fast growing aggressive cancer and that worries me greatly.
Last chemo for me next Monday, I cant believe it.
I hope that we can all pull ourselves up out of this dip we have found ourselves in, positivity must reign girls, trust our specialists and the wonderful researchers that are working for answers and new treatments for us all every day 🙂
Onwards and upwards!!! come on girls lets march on together and fight the bugger !!!!!!!!
PS: STOP BLOODY GOOGLING :):)
LOL. Yeah, googling can be addictive.
Can't believe your last chemo is next Monday. Whoo-hoo! That must be an amazing feeling, Wendy.
I'm with you, re getting back to positivity. C'mon girls, we can fight this bugger!
hbunny, sorry to hear you had a low weekend.
Like you, I've been thinking about what happens after chemo. As you say, it must be a half-way thing. Also, like you, I've been looking things up on line - a dangerous thing. TNB has such a bad rep, but I found a webpage that explained things clearly and in a non frightening way. Here's the link if you want to check it out:
They also have a great page on your Path report, very clear and concise.
Thanks for the tip on Vit D and blueberries. I'd already heard somewhere about blueberries and had started adding them to my fruit salad, but will check out more about vit D.
How are the veins holding up now?
Shoes, how are you feeling today?
Good luck with the consultant today. Hope he/she can answer some of your questions. Let us know how you get on.
Karen2609 - sounds like we've all been googling. I think you're right, as we come closer to the end of our chemo the further we want to look ahead.
While I hate chemo and am wary of rads, I also like the feeling of doing something. When all the treatment is done that's it for us with tnb, and that sounds kinda scary.
Day 9 of 3rd chemo and feeling okay. Not sleeping as well the last few days – my brain seems to have come out of the chemo fog and it’s making up for lost time. Constipation has eased, but the mouth ulcers are still there. The only thing I can taste is very strong foods, but that doesn’t stop me trying. I definitely foresee a diet in my future.lol
To all the July ladies, stay strong, we’re almost there.
Karen we all support each other and half way through a treatment i am sure we all think ahead its only natural we want to know what the future holds. what ever canaer we have. But we are all so positive on here that we dont dwell on it to long. i will ask about vitimain d when i see the onc tomorrow.
let you know what he says.
Hi shoes, I did feel a bit bad after having posted, I think your post was all I needed to let go of some of my own fears, hope I didn't make you feel worse. Its a real shame you don't like blueberries, I'm going to ask my gp for a blood test to see what levels my vit d is at. From what I have read a high percentage of women with bc are deficient (over 80%) and the greatest deficiency is in the tnbc group, when you put that together with the protective qualaties of vit d against bc it can't hurt to explore further. Maybe you should ask at your next appt and we can compare answers. Probably just looking for something to do for myself but worth the question.
I'm so pleased you don't have a clot, but the phalbitis is horrid, the only thing that works for me is a hot soak in the bath, where I am right now, and the smelly hiradoid cream, feel like I've got iron rods running through my veins - tax should be easier in that respect.
Hope your appt goes well tomorrow and you get the answers you need. Keep me posted. Love and hugs. Hbunny xx
Oh Cath c and H bunny i must admit i sat and cried after reading your posts i can feel the love.
I am sorry that i have made you think about your tnbc it was not intensional. Hbunny please dont google it will frighten the life out of you i only look at the breast cancer sites. I also wonder how they will test me in the future and how often. I am seeing the onc tomorrow and have a big list of questions for him. Unfortunatly i hate blueberries.
As for my update i dont have a blood clot but i have phlebites thats an infection in the vein in my leg. So i use voltorol gel. as for the tummy probs i think i am stuck with that for a while so i wont go out with out spare clothes lol.
Hope anyone that is going for treatment this week has minimal SE.
Hi tnbc ladies,me again, it's really reassuring to know there are a few of us here, I thought it was just me. Anyway to update I had a grade 3, 12mm tumour with 1 out of 4 nodes effected, which puts me at stage 2. Lumpectomy with following rads (don't know how many yet, but think 4 weeks). Hoping that because it was the sentinel node no others were effected and clear margins, although one was pushing the margin. Hbunny
Hi shoes, you certainly my have had a rough few days, but I hope you are coming g out of it now. I'm with you on the triple neg dx, I don't know if it's being half way through but had a really low weekend thinking about what happens after chemo and rads, secondaries etc etc, researched the internet and now scared silly - again! However did find a lot of current research, just a long way off, and there is good research about blueberries and vit D being especially helpfully for tnbc.
I'm considering asking my onc about further tests to identify if my sub category is sensitive to chemo or resistant to, somehow I don't think there will be any tests available though, just have a sinking feel I g right now that the chemo is doing nothing. I know there are many, many tnbc survivors put there and I've just purchased a book on kindle called "surviving tnbc - hope" hoping this will give me a little inspiration.
Hang in there shoes I'm sure things will be ok and its the half way Mark that's hit. Take care of you. Hbunny xx
what a horrible time you're having. Has the hospital changed the type of penicillin you've been given?
It's just one more embarrassment on top of another, isn't it?
I'm also triple negative - 2cm's grade 3. Like Wendylois I had a lumpectomy and clear margins. Also like her, I'm hoping that means all the cancer is gone and chemo and rads are just the big guns making sure nothing else survives.
It is scary knowing that there's no other treatment for us. Makes me wonder why I didn't just go for a mastectomy and be done with it.
I've just got to trust that I'm doing all I can at the moment. Fight one battle at a time, that's all we can do.
Good luck at the DVT clinic today. Let us know how you get on.
Day8 of 3rd chemo and feeling okay. Slept rubbish last night – couldn’t get my brain to switch off so I’m guessing today will be a loooooong day. Mind you, I’ve slept so much throughout this whole thing that I shouldn’t miss a few hours.
Stomach bloating seems to have gone down, but the ulcers in the mouth are being a nuisance. Plus I can’t taste anything at the mo so no cream cakes for me today – probably a relief for the scales. lol
Hope everyone is having minimal side effects.
Wendy Thanks for post i have grade 3 too. On 3 FEC then i think 6 taxol weekly. Then 5 weeks rads.
i am trying to be positve but i am sure with the support i get on here i will get through it.
Hi Shoes220. Sorry to hear you're having a bad time. I also had triple negative, stage one, 20 mm, grade three. I didn't have any lymph nodes affected, so as far as I'm concerned the lumpectomy and follow up surgery to leave a clear margin left me free of cancer. The chemo and radiotherapy are just to make sure it doesn't come back. Try to tell yourself the same.
Are you on EC chemo? I also had diarrhoea during the last two weeks with similar embarassment so I bought some Imodium and that sorted me out. My oncologist has prescribed the NHS equivalent for me this time round. Third treatment tomorrow and, apart from hair loss and the 'runs' I've had minimal side effects.
Best wishes, Shoes, and everyone else this week.
Hi all not been on latley and like a few of you by the time i have read through all your posts i am confused who said what. So not able to reply to each of you.
No constpation here infact the horrific opposite standing in a&e hubby said there is a nasty smell went to the ladies disscovered it was me nurse gave me something to sort myself out including paper nickers
One hour later same thing happened shopping so legged it home quick. since then tummy cramps but nothing happening. Chemo ward thinks its a reaction to the penicillin.
Three days ago i woke up to a pain in the calf of my leg so a&e have been giving me tummy injections every day till i can get to the DVT clinic tuesday.
SE are better this time mouth sore but other wise i am hopeing a better week till next fec on the 4th.
Can i ask is anyone here with triple negative cancer. As i know that when chemo and rads finished there is nothing else i can have no tablets or injections. Feeling so down about this i saw a counciler before i left the ward. i am expecting a visit from the local macmillan team soon. i really need to get my head round this.
There you go i am moaning too but i know that my chemo buddies will understand.
keep well any one who is going through treatment this week. i am just trying to keep out of hospital
So sorry to hear about your mum. And how disappointing for you all that she may miss your son's wedding.
I know the worry of her on top of all the wedding angst and chemo hell must be overwhelming at times, but it sounds like you're coping well.
Can't believe you have your radiotherapy booked already! Wow! your hospital does move fast. I haven’t asked about my rads yet, but I must my next visit.
As for watering eyes, mine are watering more, but I've put that down to losing a few eyelashes. No redness or puffiness. Maybe one of the other July ladies will have an answer.
Horseslave. I can't believe they gave you the same nurse. I would put a complaint in immediately. That is disgusting, especially when you asked specifically not to have that nurse.
Not surprised you're seething about it.
Please don't let it upset you too much. You need all your energy to focus on getting through your chemo and SE's.
Keep strong. Sending you massive hugs.
Day 7 of 3rd chemo and I’m still feeling fine. Constipation seems to have passed, although my stomach is still swollen – and no, it has nothing to do with all the cream cakes I’ve eaten. Lol. I can feel some mouth ulcers starting up, but I’m using the mouth wash and being careful with my cleaning.
I shall steer away from people for the danger days – 7-14. It worked last time, and while it can leave me a little cabin crazy, I really don’t want to end up in hospital again.
Here’s hoping all the July ladies are SE-free and enjoying this wet bank holiday Monday.
Has anyone else been suffering with watering eyes? Having been to the 'Look Good Feel Better' workshop on Tuesday I'm keen to try out my eye makeup but it's running off each time I apply it. Panda/puffy/red eyes aren't a good look! Not being caused by the new makeup, though, as it started a couple of days before then.
It's interesting to read that a lot of you are suffering from constipation as I've got the opposite problem, apart from constipation caused by the anti-sickness pills during the first three days when I found a few prunes with my breakfast kept me 'regular'. I've found the Imodium or supermarket equivalent has helped the diarrhoea, and my oncologist is prescribing it for my next and third EC on Tuesday. Amazing to realise that I'm half way through chemo now as I'm only having four cycles. I've also got my radiotherapy planned for October with the planning session booked for the day before my last chemo in three weeks, and will be finished by the end of October - just seven months from finding the lump to cured. Not bad, eh?
I hope I continue with few side effects as I've got a lot on my plate at the moment as my 91 year old mother fell three weeks ago - same day as my last chemo - and broke her right hip and shoulder, which has meant that she can't use her right hand, and she's right-handed, so found it hard to feed herself and is now being tube fed with an NG tube and additional soft food. She's in a very low, depressed state, which is not her at all, so it's very worrying. She's still in hospital and is likely to be there some time, and my son is getting married three weeks today and it's looking more and more unlikely that she will be able to be there which will be very disappointing for everyone. 😞
Best wishes to everyone for the next week. Wendy
Hi, slyolddog. Had to laugh at your statement about being part dormouse. I'm the same, although I'm feeling more bear than dormouse. I don't think I've ever slept more in my life.
Your day out - pictures and a meal sound fun. It's good to do something totally unrelated to chemo and cancer, isn't it?
8 steroids a day seem a lot. It's a wonder you're not climbing the walls. I only have to take 4 a day for two days. Funny how our treatments differ.
As for seeing my onc - I see her , or one of her minions, before every treatment. She talks through everything and gives me a physical exam. The reception area for chemo and pre chemo are linked in my hospital so I see the bc nurses every time I'm there, and if I need to chat to them they always make time. I can honestly say I’ve never met a nicer bunch of nurses, or doctors.
The nurses who handle the chemo are also great to bounce any problems/worrys off. I don’t care how daft I sound, if I have a question I ask it. This is my body, and my cancer and I want to know all about it.
Who knew cancer would be so liberating.
Sorry to hear you're suffering, as I am, with constipation, and I promise I won't say a word about the wind...LOL
Love the idea that by the time the next bank holiday comes around we will be finished with our chemo. Can't wait for that day!
Good luck with your TAX on the 5th.
It has been a bit quiet on here but some of use are post chemo so a bit subdued. I found the third hit me a bit harder than the first two tiredness wise, even falling asleep in the afternoon. My natural state is part dormouse though, which is probably why the steroids don't keep me awake. Well, we'll see how I get on taking 8 a day!!
Cath - how often do you see your oncologist or a BC nurse. I only get to see the onc just before cycles 2 and 4 just to go through any side effects of the 1st of each cycle, i.e. FEC and TAX. I haven't seen a BC nurse since the beginning of July and that was only by chance. I wonder how much contact other ladies are having with the professionals. And you really need to get your bruising checked, but I know what you mean about not fretting over everything. I'm really suffering with the constipation, I have a bag full of Movicol and a jug of lactulose but things are still difficult, perhaps I should take them both. And don't even mention the wind.
JuSt - only 5 hours sleep. That sounds like a nap to me! I really hope you pick up soon, life is always harder when you're low on sleep, whatevers happening.
WP23 - back to work in september and new clothes, that's something to look forward to. November's my time, although it will be a graduated return and while I'm having radiotherapy. I can't wait, just to have people to talk to during the day will be great. Family are all at work, as are friends so the days can be a bit long.
Finally felt normal enough on Friday to go out to the pictures and for a Mexican. Food never tasted so good. Saw the Inbetweeners movie which wasn't as good as the first but still had me laughing so much at one part that my chest hurt and I couldn't breathe. Definitely the tonic I needed. Have to make the most of the next two weeks before TAX on the 5th. Even thinking of getting out on my bike, once its serviced. Not sure if my energy levels will sustain me for long enough though, might just cycle round the block.
I hope everyone is having a good bank holiday weekend. As someone already said the next time a bank holiday comes round we'll be done with this part of our treatment and life will look a whole lot different. That is certainly my focus, although I wasn't as pleased at reaching the halfway point as I thought I would be, possibly because of the unknown for the next set.
Anyway, no moaning, the sun's shining, good music on the radio and a fruit cake in the oven. Off to kent for a couple of nights to stay with friends so all's good at the minute. Keep focused everyone and whatever else is happening I hope whatever stage of treatment you're at the side effects are minimal and the good days outnumber the bad. XX
A new wardrobe sounds like fun. As does lunch and a walk.
Thanks for the tip re constipation. I think maybe I should start the day before chemo as you do - might just be the 'push' I need. lol
JuSt- 5 hours’ sleep and an hours ironing! Wow! You are feeling better. lol
I didn't get my bruise checked out, and now reading your post I feel guilty that I didn't. There was no redness or pain so I kinda brushed it off. I know, I know, we're not supposed to do that, but it's hard to stress about every little thing.
So glad mum and son are reunited again. Mine is still taking his tablets and ointment and the rash is healing well, but he still can't understand why I won't pet him as much.
So glad to hear you're feeling better, Karen. Are you sleeping now?
Like you, by the time I get to my consultant I usually have forgotten what I need to ask them so I've started writing everything down. OneNote is handy (as is evernote) because it links to my comp and my phone so I can type anywhere and have it sync. Plus, I don’t know about anyone else, but my chemo brain has kicked in big time! If I don’t write it down it’s gone for good.
As for your recon, why don't you have a chat with one of the nurses when you're at your next chemo? Dec seems a long time to wait to know what's going on with your own body. Even if they only talk over the options you will be given, it would be something. I figure, like me, you didn't take in a lot of what you were told at the beginning.
|Hope you're still sleeping well.
Clare - Glad to hear you're doing okay. You sound like me, sleeping away the first part of your cycle.
Day 6 of Chemo 3 for me. Feeling pretty good, bit tired and achy but nothing major.
Had a lovely day yesterday- went shopping and to lunch, then went for a long walk. It was so nice to do something normal. I was bone tired by the time I got home, but it was a good tired.
Hope all the July ladies are enjoying the Bank Holiday weekend.
It's reassuring to hear that I've not been the only one 'buzzing' and thankfully it seems to have settled down over the last couple of days - hope that's the same for you others also. Last night I even managed a good 5 hours uninterrupted sleep which feels great - I've even done an hour's ironing already!
CathC - did you get your bruise checked out at all? I've had some light bruising of my veins but not too bad - would advise getting it checked though, especially if you have any swelling/redness. Another lady I know going through treatment had hers checked this week and they discovered a blood clot so she has to inject herself daily now for the next six weeks. I'm not saying yours could be this and don't want to alarm you but just feel we should err on the side of caution and get anything we're not sure about checked out. I ended up calling the chemo ward about my veins and bruising last week and they went through an assessment with me over the phone before deciding mine was just normal side effects but better to be safe than sorry. Also, hope your prune juice has done the trick now. Glad your dog also went on ok at the vets and mine are re-united now. Thankfully, son is not pestering mum much but it is hard walking them separately - whichever one we leave behind each time really doesn't look impressed!! x
Karen2609 - hope you are feeling more 'up' now after being down - I don't think we'd be normal if we got through this without those days sometimes. Hopefully, we'll just keep having more ups, less downs and get some semblance of normality back quickly. I hope you are managing to sleep better now the steroids are over as lack of sleep certainly doesn't help - sending you a hug x
Nikki49 - thanks for dropping in with the info. I'm not on the anti-sickness drug you mentioned but I imagine the feeling could be a mild reaction to any number of drugs we are taking. Sometimes I wonder how we know what side effect is from which chemo or drug as there just seem to be so many?? Always worth mentioning them though. x
Wendy (WP23) - nice to hear you had a lovely day out yesterday. Wow - work in September? that'll be a shock to the system! Must admit I've not even thought about heading back to work yet as it still seems so far away but feeling a part of normal life again seems very appealing. Hope all goes well with your return x
Hope everyone has a lovely bank holiday weekend with minimal SE's.
Hugs to all
No need to apologise about moaning. That's what the site is for.
Sometimes the side effects of the chemo are worse than the chemo itself.
Not sleeping has got to be the worst. Can I ask? Why are they doubling up your steroids with your next treatment? And if they intend to do that can't they give you something to combat the sleeplessness?
This journey of ours does seem to be never-ending. I’m trying to only think of one part at a time. The op, then the chemo, and after that I’ll think about the rads.
I didn't realise that you hadn't had your reconstruction yet. That must be a worry, especially if you don't know what sort you can/or will have. Hasn't anyone explained it to you?
I've always found I'd rather know what's going to happen, that way I can prepare myself. The unknown, as we've all found out, can be scarier than reality.
Sending you huge hugs and hoping you get a good night’s rest tonight.
Nikki49 - thanks for dropping in with the info about the anti sickness drug. I wonder if any of the ladies suffering from the 'buzzy' feeling are on that at the moment?
Hope you're staying well.
Been very quiet in here lately. Hope everyone is okay.
Day 4 of 3rd Chemo and I’m not feeling too bad. Temp is still kinda low, but I’m taking it easy and listening to my body. Constipation is still a bit of a problem, but laxido and prune juice are a powerful combination. Lol
The bruise on my arm is really black now, still not sore but ugly to look at. Anyone had something similar after their chemo?
Sending massive hugs to all the July ladies. Stay well
Horseslave, good for you, booking a weekend away. I've been putting off going anywhere too far from home, just in case, but you're right. If you're feeling poorly you can always chill out in your room.
Enjoy the trip and good luck to the chickens. lol
JuSt, so glad to hear 'Mummy' lab is doing well after her op. She probably does need the rest from 'son' but I can just picture her sad eye look at you when you don't take her home - nothing like it to tear at the heart. lol
My dog got on well at vet too. She gave him some ointment and tabs for the infection, which had spread from his mouth to his leg. He doesn't mind the ointment, but getting tabs into him can be a chore - he's a canny animal. lol
Can't the docs give you something for the insomnia? The extra anti naseau tab they've given me makes you very sleepy (something I don't need a hand with) and can only be taken at night. maybe you could ask for something similar. it's called Levomepromazine.
I would also mention the 'buzzing' feeling, just in case hubby is right and it's linked to the drugs. Nothing, no worry is too small to mention.
I see Ruby and Wendy have the same thing, so it definitely sounds like a side effect.
I remember the restless legs from my last chemo, figured it had to do with the blood count injection they gave me.
Keep taking the treats - they're medicinal too. 😉
Day 3 of 3rd Chemo and I have no idea where yesterday went! The lovely constipation is back, although I have all the meds to hand this time and I’m dosing as needed. I also received my blood boosting injection yesterday so I’m all ready for the bone aches and other gorgeous SE’s that it may bring with it. No appetite yesterday but I intend to remedy that with a sinfully wicked fresh cream pavlova. Hey, if it works, it works. Lol
One small thing, I seem to have developed a long bruise where I had my chemo. It’s not sore, just unsightly, anyone else get that?
All in all, things going along okay and SE’s are bearable.
Sending huge hugs to all going through treatment this week, and all those suffering the dreaded SE’s. Keep your chin up, girls, this too shall pass.
'Mummy' lab seems to be doing fine after her op thanks. She has not come home to us yet as we think 'son' might be a bit too boisterous and she deserves at least a few days peace after going through that so she is being cared for by my step-dad who lives just round the corner. We might try tomorrow to see if he will leave her in peace enough (the pup that is, not my step-dad) for her to come back though as she seems to be missing us and is getting very vocal when we visit - definitely seems to be telling us she knows where her home is and asking why she's not coming back with us, although she is getting lots of pampering and one-on-one attention in her lodgings!
I've not been too bad overall 3rd cycle - Emend finally stopped sickness, had vein pain and more tiredness but the hardest thing for me at the moment is extreme insomnia - very annoying when I've most definitely been eating much healthier than previously - cut right down on the 'baddies' (although have felt entitled to the odd cake and biccie treats!) and virtually no alcohol for ages. Sometimes in the evening I just feel like my body is buzzing from the inside out - hubby thinks it's all the drugs from the chemo but who knows?
Your day at the hospital sounds verrrrrrrrrrry long - bet you're glad that one's over - sounds to me like there was no option other than a chinese and glad you enjoyed it.
Hope you have minimal side effects,
Timing not great for us meeting up next week then! These cycles sure do seem to come round quicker each time. My chemo is scheduled for Monday 1st, all being well, so just a few days after yours. We'll just have to see how we go but hopefully meet up soon. Hope you have a lovely time in Norfolk and all the best for next week.