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
So much to catch up on so apologies if I miss anyone out.
i had such a great day/night away with my OH. We only went to Limehouse but I’ve was a beautiful sunny day and we really enjoyed walking along the Thames Path and listening to the waves when the boats went past. Stayed in an interesting B&B which is designed to be a place for reflection and peace. It was in the middle of a built up area but thanks to triple glazing it was indeed very quiet and relaxing.
Well I’m off for my first Paclitaxel of 9 today. Chemo nurse who did my bloods has warned I should still expect to feel very tired. Oh well, I’m just hoping for no nausea again although Larry tongue 😛 has been threatening to make an appearance over the last couple of days but hopefully I’ve sent him packing!
Its great to hear so many of you are done and dusted with chemo -I know there are still further surgeries, radiotherapy and hormones etc... to contend with but good that it’s something else to tick off. I’ll look forward to those Woo Woos at the end of Nov/beginning of Dec. Hope you’ll be joining me Reddi!
Kip I think we should name your thumb! It obviously isn’t going to let you completely forget about it just yet. Hope it stops sending you random tingles soon.
Lisa your hand really does look sore and swollen. Hope the oncologist can suggest something today to help but fingers crossed the chemo can go ahead.
LJ It’s frustrating to have to go I’m at the weekend especially when you weren’t warned.
Woo Woos coming up!!! Ill keep some chilled for those late arrivers.
Lisa your hand looks sooo sore, my tingly thumb now sends random tingles up my arm! Nobodh seems worried about and t still wont see Onc until 8th November once surgery over and healed. Ill keep everything crossed your last chemo gets done on time.
Mimi ... Your woo woo is being prepared...well done!
LJ what a pain about the weekend slots, does herceptin take long or is it just an injection?
Keep going ladies. ... Big hugs
Fingers crossed for you Lisa!
Sadly my unit only does Herceptin on its own at the weekend so I've requested a move to a Sunday as it's less disruptive over all. That does mean everything is pushed back a week and there's a possibility I might need to request another time for the December one, but I'll have to wait to see what's allocated. I feel really let down no one had said it would be moved to the weekend if that's a non-negotiable. Now worrying about my radiotherapy timetabling not being able to accommodate my three nights booked in Belgium.
YAYYYY well done KTK and LJ for reaching the end of chemo. It is a funny feeling isn't it? I was expecting to be more elated but it was pretty low key in my unit too... although my bestie came along and we counted down the drip machine from 7 seconds down to 0 and got a photo of it as it ended. It is a nice thought to know that once the SEs are done we don't have to do that again...
So to the rest of you ladies.... we'll keep doing a Shi style dance and wait for you guys to arrive with us.... I'll take up the role of making cocktails......mmmmmm what shall we start with....
@Lisa Marie Keep us posted on chemo-puppy-arm. I hope either your GP or your oncologist finds something to clear it up asap.
@SallyG63 Do you know the name of your trial? (If not, no worries -- I'll try to track it down via Cancer Research.) Sounds interesting! And though it means continuing treatment at hospital, you still get to celebrate each milestone along the way, right? While also exploring a way to prevent recurrence.
Hurrah, ktk & LJ! Can't wait to see everybody crossing the finish line, first of the last infusion, then of the last WBC trough, etc., etc. And can't wait to be joining you all there, too -- though it'll be early December when I finish up, assuming no more delays, and you never know when there might be delays.
In good news, the microbiologist at the hospital gave my oncology team the green-light to go ahead with the next cycle of chemo this Friday, even though I'm only midway through my course of antibiotics for my nasty C diff infection. (Pending good bloods and no reversals in my improving gut function, of course.) I'd basically convinced myself that I'd have another week of delay, so this was very happy news. Off to the dentist in the morning for my six month check-up -- though no hygienist cleaning this time round -- and check of my jaw health.
I can't remember if I've mentioned that I'm trying a bit of DIY cryotherapy on my hands and feet during the docetaxel infusion to potentially protect them from possible neuropathy and nail damage. It's sort of like cold-capping for your fingers and toes. While there have been multiple studies on cyrotherapy for this purpose, the evidence isn't definitive; however, The Christie in Manchester and several US cancer centers offer it to patients, and as long as the cold packs are covered with fabric -- so not touching the skin directly -- there isn't a downside, if you're able to tolerate the cold. (I won't lie: I found it tough last time.)
In case others are curious: I used some gel-pack socks that I bought from Amazon US (my sister toted them over when she visited in August to save on international P&P) and some foldable flat gel packs that I use for my hands (less than ideal, but they were what I could get/afford -- 4x £2 each from Lidl). I put them on 15 minutes before T begins, switch to a second set at 45 minutes, then keep the second set on for 15 minutes after T ends, for a total of about 90 minutes. For my first cycle, this was logistically easy, as I had Herceptin and Perjeta the day before; not sure how well this will work this coming Friday, when I start at 9:30am with, as I understand it, Herceptin and Perjeta, only getting docetaxel in the afternoon; my chiller bag may not be up to the challenge of keeping the packs nice and cold. But I'm hoping this plus my Polybalm experiment might help guard against these particular side effects.
Too bad I can't apply cryotherapy to my gut bacteria!