I start on Herceptin tomorrow, and T (docetaxol) on Friday.....
I wish I didn't even know the H word or the T word.... just thinking, this time last year, most of us didn't.
Had a little wobble this morning when I thought I saw some pus around the picc line entry point. The chemo unit had me come in to have it looked at, dressing changed and swabbed the white fluid? They said they didn't think it looked like an infection, so I am going ahead with treatment as planned.
Didn't help that on the way in to the hospital, someone backed their taxi into the side of my car. I got all the drivers details, took a photo of his car and mine, and even asked him to sign a statement to say it was his fault....... He was really apologetic, but then tried to say he could ask a mate to fix it if I didn't use my insurance company etc. No way!!!!! Not too much damage, but it will need fixing properly. Insurance company was amazing. They are arranging all the repairs and supplying a courtesy car. I have told them my 'situation', and that I was not sure I would be home when they pick up my car and bring the hire car.
Could have done without this, but in a funny sort of way, this just doesn't matter; with what we are going through with treatment, which is essentially saving our lives, a broken car seems like a minor complication.
Hi ladies, thanks for the replies. All very interesting isn't it.... so looks like tamoxofen will be the way forward for me I guess. I've had sweats and mood swings but can't tell if its hormones or chemo or both! And JacB.. crikey I hadn't thought about being treated for a cure or not..... that's worrying. They keep saying to me "Belts and Braces approach" so hopefully that's good?? I must ask more questions next time... but I am always so glad to get out of the there I forget half of them... I'll write a list for 8th November appt!
I'm another one waiting to find out about hormone therapy - I think I am 4/8 ER+, I remember I'm only moderately receptive. My menopausal status is a bit of a mystery as I had a Mirena coil in until just before surgery. I've had one period since then, but it's not clear whether that was reaction to the coil coming out or what. I'm deffo having warmer moments though! I guess we'll talk about all if that at my next oncologist appt at the end of the month. Am apprehensive about the effects of hormone therapy though, especially weight gain, I can do that on my own without any help!
Saw my GP today. She has signed me off for a month for post-chemo recovery, with the instruction that it's no problem to extend if I need more time or radiotherapy is proving too onerous.
Hmmm, its strange isn't what we get told at different hospitals. I haven't actually had any kind of lengthy discussion regarding hormone bit, all I know is I am pre-menopause (or was before chemo) and that I am ER+ 8/8 so will have to take hormones (they mentioned Tamoxofen). I did have a bone scan before chemo but not sure if thats the same kind of scan or not? I guess once I have had the next surgery and got all clear from that they may talk about it, not sure if that happens before or after rads? Its just one thing after another to get your head around isn't it. I have wondered how they assess whether or not I am post or pre menopause now chemo has been done, as I have only had 1 period since beginning chemo so not sure what that means, have they stopped for good or just during chemo? I can't begin to think about it all as now getting my mind ready for surgery, and actually getting a bit scared although I've already had one lot so shouldn't be but....
Also had a lovely chat with my daughter last night and out of the blue she told me she worries about me and it makes her sad but she doesn't tell me for fear of upsetting me. Well that set me off...I hate the fact the children are worrying but I know its normal. She said she wants everyting to be back how it used to be (cor me too I thought) and she hates seeing me ill. I tried to reassure her that I am feeling fine now but its hard when she knows I still have other treatments to go. I just hope the rads are straight forward and she can see I am coping. Just as I had got her smiling again... on the TV was a little girl who had lost her Mummy when she was 3 due to Breast Cancer... BANG... I could see my daughter deflate and look at me with fear. What on earth do you say? I did my best to reasssure her but crikey its hard. Its really deflated me to be honest too, went to bed worrying again. Just seems you can't escape BC wherever you go, today a charity bag came through the door... yes for Breast Cancer! One of those down days I guess, but am picking myself up and carrying on.... its all we can do isn't it.
Take care all
What an interesting thread, ive not had or been told anything about vit d or anything else but then i dont get told much it would seem. Interesting to note!
I'm not on chemo, but on letrozole and AdCal - just wanted to add my twopenceworth re: bisphoshponates.
I'm post menopausal, and before the oncologist had a chance to give me a resume, the lovely breast radiologist talked about drug regimes, and mentioned the contraindication of bisphosphonates and possible jaw necrosis!! That was enough to put the fear of god in me, as I weighed up bone thinning (I'm borderline) against my teeth falling out, not having the best of teeth in the first place!! I am afraid the oncologist only got a 1 out of 3 with me, as I refused them, and also the prospect of chemo, as again I was borderline for that. ( As I left that initial appointment, the specialist oncology nurse spoke with me, just to double check my opinions and advise - and I said to her, " I know I'm quirky, I really do appreciate everything being done for me, but chemo is a no " to which she said " You'd be surprised, about 50% of the people I have seen through here this year have refused chemo ". I was surprised.)
Wishing everyone the best on this thread.
@ktk Definitely check with your team if you are starting bisphosphonates. The interactions between calcium uptake, vitamin D, and bone turnover definitely need to be considered. I don't understand them, even after a long talk with my dentist last week.
Odd, your surgeon's take on vitamin D, given the NHS guidance: https://www.nhs.uk/conditions/vitamins-and-minerals/vitamin-d. I started taking it when my OH had a back injury and the GP discovered he was deficient and put him on a loading dose. We eased off for a bit, but then he was found to be deficient once again this past spring, and since we eat the same diet, spend about the same amount of time in the sun, and both wear sunblock religiously, it seemed likely that a supplement made sense for both of us.
KTK, funny you should ask that. I had problems when actually having a wee, when I thought I had finished I would find I stood up and then had a waterfall... I actually found out hat having no hair down there also made peeing straight difficult.. who would have thought. I do think its chemo doing it, as everything gets hit by the bloomin' stuff. It has improved now though, was worse during FEC and first T... and to think I was most worried about being bald... I never imagined there would be so many more problems to contend with!
Hello everyone, well its all happening on here isnt it.
Cdc i like Tingle... tingle isstill tingly and numbish and sometimes the tjngles go up my arm like pins n needles but hopjng it will sort itself ss chemo gets out of system. Im startjng to feel better slowly, v tired but worst thing is still the waterh eyes, sometimes i cant cven focus as they water so much. I hope your red face is lessening, at least nobody can say you look pale and ill. I had a red face with first fec snd everyone kept sayjng looked like i had been sunbathjng. Its shocking how manh women get bc bc isnt it, and a realky good thing your cousin got checked out too. It just seems the age for screening is too high!!!
Im not sure who asked but j had high liver enzmenz one cycle too, it didnt delay the chemo but they said it was all the drugs we have to take plus the chemo and our poor livers work soooo hard. It came down for the next one though.
I also had a reduction jn my chemo on T, the nurses said there are safe levels to use and as they dont go below or above these levels its fine.
I also have fluconozole each cycle after my stint in hospital and severe Larry mouth, it has defjnately helped , i start taking it as soon as my mouth starts to feel odd, usually day 4 for me, and take one a day for 10 days plus i swish mouth with salt water every couple of hours and after eating and have avoided the ulcers since. Even Larry hasnt been so lardy.
Well i have the last antibiotics today, then no more tablets until Tamoxofen!! Will be strange tomorrow not popping the pills but looking forward to giving my body a rest. Will be even weirder nsxt weekend not startjng the steroids for chemo, havjng friends over to celebrate that fact! Hope i can stay awake!!!
So good you’ve met some nice people om the chemo ward Sally. I always end up being the only woman in a room full of old men, They were all asleep yesterday and some were snoring which kept me awake!
Shi I certainly look as though I’ve done a few rounds on the dance floor with my flushed face! 💃🏻 💃🏻 💃🏻💃🏻!
My temp is ok but will certainly keep checking over the next couple of days.
Georgie - I’m glad they’re going to reduce your dose as your chemo issues have been truly awful. So hope it helps. Hopefully the fluconazol with help with your mouth problems too. I’ll be thinking of you especially on Thursday and Fridays. I now have bloods on Thursday and chemo on Fridays so we can be chemo buddies! Reddi am I right in thinking you also have chemo on Fridays too?
I had my first of nine weekly Paclitaxel yesterday instead of 2 more docetaxel as my onc said id had a severe reaction dose of T. I haven’t had any neutropenia thank goodness but I seem to have a lot of skin issues. I’m just waiting for a call back from the Chemo nurse as I’ve had a permanently red face today. I could stop traffic! ☺️🚦🔴 Just been reading that it’s a common side-effect of Packlotaxel. Oh joy! At least the hand/foot syndrome I had on docetaxel was less noticeable! I hope it doesn’t last- I feel so self-conscious.
i feel far less tired though, so far , and spent a couple of hours helping to fill a skip at my Mum’s! Not sure what my medical team would think but I was extra careful to use gloves. Hope you have a good weekend.
Hi Georgie -- The broad-spectrum antibiotics are only an issue with respect to C diff if you have C diff in your system. It could have been in my gut for quite some time -- I might have picked it up last year while caring for my mom, who has a muscular dystrophy and so uses a bed pan. Basically, the board-spectrum antibiotics killed off the other bacteria in my gut, but not the C diff, and the C diff took advantage of the extra space and lack of competition to colonize. The main thing to watch out for is diarrhea. My hospital's chemo hotline sheet made it clear to call after 4 episodes within 24 hours, and to treat it as urgent at 7+ episodes -- and I was at 7 when I went to the A&E. Just keep on alert, and stay hydrated.
Perjeta is another HER2-targeted biological therapy. The NHS only gives it, with Herceptin, pre-breast surgery. I have only had sentinel lymph node biopsies thus far. Surgery will be on the other side of (neoadjuvant) chemotherapy. (I don't know how they decide who gets Perjeta.)
Hello Reddi, and everyone else,
I am grateful that you told me that it isn't that unusual to have 75% docetaxol. I was a bit concerned that it wasn't 'enough' ....... what is perjeta for? I am having herceptin alone for a year, every three weeks. I'm negative for hormone involvement.
Also, the C diff sounds scarey and I really hope you get rid of it. It is concerning that the broad spectrum antibiotics plus docetaxol could have sparked off C diff. I do wonder what the heavy IV antibiotics for sepsis plus the ones they started me off on for the MRSA did for my body, in terms of how the NHS are always warning us not to ask for antibiotics as our bodies build up a tolerance to it!
Does anyone else know about antibiotics tolerance?
Thank you so much. I really value your 'company' on here! 😉
@Georgie I didn't have nearly as awful a time on FEC as you did (1 A&E visit / admission for febrile neutropenia, 1 A&E visit for identified infection in the arm where I got chemo while neutropenic, both requiring antibiotics), and this despite getting filgrastim injections -- the usual 5 each cycle plus extras in hospital and 5 extra days after the arm infection as identifed. Plus, as noted in a post earlier today, my liver enzymes were elevated at the end of cycle 3, forcing a 2-week delay before I started TPH. They lowered my first docetaxel dose to 75%, too. And my oncologist says I'm tolerating chemotherapy well!
Happily, I wasn't neutropenic midway through or at the end of cycle 4 (first TPH) -- an improvement! (Consensus is that my C diff. infection and severe diarrhea in cycle 4 was almost certainly provoked by the broad-spectrum antibiotics I got in cycle 3, but perhaps exacerbated by the docetaxel. Now on different antibiotics for the C diff.)
From what I understand, lowering the dose isn't uncommon. Safety first. I thought my docetaxel dose might get bumped up for cycle 2 of TPH, since the Perjeta and Herceptin dose is lowered, but they kept me at 75% again for cycle 5 yesterday.
I hope the lower chemo and steroids dose, fluconazole, and continuing filgrastim injections help you get through the next cycles with many fewer SEs! 🤞
As you know, I have had an awful time with FEC, and was due to start Herceptin and T on Thurs and Friday this week, but because of all the neutropenia and hospital admissions, I had a meeting with the head oncology nurse on Thursday instead of treatment. Onc has decided that I am very over sensitive to chemo drugs full stop!..... I tend to agree 😫!!!
So they have planned to only give 75% of the full dose, even before I start... and only 50% of the steroids. Don't understand all of the technicalities, but the nurse said that they are trying to keep me out of hospital. They're giving less steroids because he said they didn't appear to make much difference with FEC, and even with the white cell booster injections, I still had neutropenia and 3 trips to A and E with high temp. and infections.
They are giving me 2 whole weeks of fluconazole and mouth washes too, since the oral thrush was so bad that I could hardly open my mouth whilst in hospital last time. When they asked me to say the obligatory
'aaaaah', I only came out with a very husky oooooooor!! 😂🤣.....
So it's Thursday for Herceptin and Friday first T.
Love to all, especially those on treatment this week or next ❤️
@Sue I had elevated ALT liver enzymes at the end of my 3rd cycle of FEC (usual pre chemo blood test day had them at 260 vs normal range of 10-40 for women) and ended up having my first THP cycle delayed by 2 weeks. They went ahead with cycle 4 when my ALT was down to 67. By day 13 of cycle 4, I was down to 30 -- totally resolved.
In my case, they think it was a combo of chemo, antibiotics for an infection (cellulitis or thrombophlebitis), some dehydration (went hiking in the Wye valley over the 3 days before my pre chemo blood test), and some small amount of alcohol consumption (1.5 pints of 3.8% beer spread over those 3 days), with the first 2 being the suspected main culprits. To help my liver recover, I drank lots of water -- at least 3.5 litres a day, plus other fluids like tea, diluted coffee, OJ, detox smoothies -- and kept things easy. My breast cancer nurse also recommended milk thistle tincture drops from A Vogel. They taste disgusting and I have no idea if they helped, plus the oncos are always advising against supplements, so I would advise talking to a member of your team before trying them. I only did so when my first 2 follow-up blood tests still had my ALT above 200, but it may have simply been the extra time between ending antibiotics and last beer that got things resolved.
Hi Reddi thanks for the info, i guess ill find out soon enough, they definately mentioned tamoxofen, i suppose i have to get the surgery done first. Im just thjnking ahead.
Lisa marie... Crikey no wonder you have suffered with the chemo .all full doses!!!! Mine was reduced for 2nd T and 3rd... You really do need a break from it.... At least the BC will have been well and truly nuked!!! Enjoy the extra week out... Hope the hand improves.
My OH came in from work last night and said another colleague has just been diagnosed with BC, thats 3 since my diagnosis and all under 50!! It so scary...
Hi all, sounds like everyone is ploughing on with their chemos which is great. Hope you all manage to avoid too mahy SEs.
Cdc good idea to name my thumb.... Any suggestions...!??? Sounds like you had a lovely break away too. My tingly thumb is also very dry.. i use Flexitol on my hands and feet it also has urea and is actually really for feet but is good on hands when reallh dry.
It really concerns me that you all seem to know about what hormones you will be getting, nobody has asked\mentioned ovaries to me, i was still havjng periods before all this although chemo seems to have stopped them but as my bc is 8/8 er+ i will need to stop all eostrogen, so they mentioned tamoxofen but not anythjng like zoladex? Do you normally start the hormones after or before rads? Perhaps i should call my onc nurse to ask?
Sorry i confused you with my photo... Not exactly the kind of photo you would want on your wall but a poingnant milestone.
So day 12 today and although still tired not feeling too bad, larry tongue still hangjng around but taste buds sort of back tho not quite right..
Enjoy your Friday evening
Apparently because the Herceptin doesn't need monitoring when given on its own it is weekend only and they won't give during the week. Given it's such a non-negotiable I don't understand why no mentioned it to me before. As luck would have it I already had stuff booked for the first three cycles on the Saturday and as I couldn't do the first Sunday either it's all moved on a week and will be on a Sunday. At least it should be in and out - as long as there's no pharmacy delay....
I'll having hormone treatment too which I'm not looking forward to given all the horror stories I've heard about it. I'd at least like a little break to shift the weight I've put in over chemo and get back some level of fitness.
And of course there is the radiotherapy to contend with too! Have first appointment about that on Thursday where I have to persuade them to avoid my three days Belgium trip. That's been booked since before all treatment started so fingers crossed.
My PICC line came out this morning, feeling slightly bereft without it!
My skin is like paper too, fed up with moisturising without any effect!
Sorry, I'm all moans today, and given my slimming world journey needs to start with a vengeance again, I might need to pass on the cocktails!!!
Hugs all xxx