Hi Sally It’s so reassuring to hear that despite the peeling they haven’t stopped your chemo. I’ve been told they’ll have a proper look at my feet tomorrow and decide what to do I think I need to up my moisturising! Did they prescribe something for you to use? I’m just using E45 and some Berts Bees stuff specifically for feet.
I hope your bloods come back ok. Horrible being so snotty even when not having chemo. Hope you feel better soon and fingers crossed you can get another chemo ticked off tomorrow. I’ve had a bit of the sniffles but no temperature. If anything my temp is a little lower than usual.
Interesting to hear about the studies. I’ve not heard of either of them, Had a look at the Cancer Research list of studies yesterday and I wasn’t eligible for any of them. Having two tumours makes me ineligible for some of them. I would be very interested in taking part in a study, not just for my own benefit but to improve treatment in the future and reduce risk of recurrence. I suppose being part of the 100,000 genome project is something.
Have a good night xx
Gosh, loads of posts for me to read! I've already had surgery which removed the 12mm grade 3 lump with clear margins and no node involvement - presumably surgery was pre-chemo because it was so small! But that's supposition. Chemo was recommended because of the HER2 result.
Just had a good appointment with Radiotherapy oncologist. She was very understanding about my holiday and I will start treatment afterwards which has made me very happy.
@georgie-gee - things I've found about T which might be useful for you.... Pain prevention medication is better than painkiller, I've had Naproxen, something similar might be good for you. I've also been taking an anti-histamine with Loradatine as the active ingredient which apparently helps with bone pain from Herceptin and the injections. Sleeping with a pillow under my knees or between my knees has really helped with supporting the joints and easing them. Even moving around at the speed of a snail helps! As always warm baths help too. I've found plain water and raw vegetables leave me with bad indigestion, as if they're just sat there! A stuffy nose has kicked in from about day seven which I believe is Herceptin related, but worth being aware of.
Last post for today, promise! (I'm hijacking! Got on a little research tear this morning.)
Hormone therapy decisions -- e.g., tamoxifen versus Zoladex -- are also guided by risk recurrence scores, per this review of the history of therapies for breast cancer. In particular, the fact that the doctors have said they are leaning toward ovarian suppression with Zoladex plus an aromatase inhibitor for me aligns with my presumed higher risk of recurrence associated with pre-menopausal synchronoous bilaterial breast cancer of different types. Another factor for me is my history of pulmonary embolism: tamoxifen is associated with higher incidence of thromboembolism. (If you're interested in more, see this meta-analysis from April 2018.) So Zoladex, AIs, and bisphosphonates (to guard against higher incidence of osteoporosis) make sense for me.
p.s. @Georgie They also set my T at 75% dose (versus max dose based on body surface area), as I'd been in hospital (febrile neutropenia) and twice on antibiotics (once for suspected cellulitis in my arm) during FEC. I also had a 2-week delay between FEC and starting TPH because of elevated liver enzymes.
Thought I'd mention as I know you had a hard time on FEC in terms of infection/isolation-room stays. I also had a hospital stay during cycle 1 of TPH -- but it seem to have been the effect of the antibiotics more so than the TPH. (Now on day 7 of cycle 2.)
@Georgie Ah, I was so focused on your carpark incident, I missed that you're starting Herceptin and docetaxel. You did FEC first, yes? In my experience -- and of course we're all different -- I've found Herceptin and docetaxel to be more tiring than FEC, and I get very insistent muscle, bone, and joint pain.
I don't know how much the pain is due to the chemo, the HER2 drugs, or the GCSF injections, but I've found the Monday and Tuesday after the Friday cycle to be my low-energy points -- basically, the 3 days of steroids keep me going, and when they're out of my body, I really do feel it. Ready for bed at 9pm; feels like I have to drag my legs to walk up to the high street. By Wednesday, I start to regain energy.
I do try to get some walking in every day, though, as it helps with both the pain and the fatigue. My OH and I even managed a (gently paced) 10-mile walk in Harrow Weald on Sunday. (I craved it as I didn't get to take walks the previous 2 weekends -- which got my mood down and my weight up.) More generally, I aim to do a couple miles each day during week 1, if I can.
Good luck today and tomorrow! Fingers crossed that you don't have any reactions and do have minimal side effects.
@Kip One other thought on recurrence risk scores: some people find them helpful, some don't. And they aren't the whole story. At my hospital, there's a woman who does reflexology for cancer patients -- she was diagnosed with "inoperable" breast cancer 17 years ago. She had a chemo regime that is a "generation" or two older than what we're getting today; I don't think they even tested her for HER2. Eventually, they went forward with a double mastectomy. She is still on hormone therapy, and will be for the forseeable future. Her first reconstruction failed; her second one, about 10 years ago, is lovely -- I can't see the scars or any differences in skin tone. And: still no evidence of disease at her latest monitoring appointment.
@cdc To be honest, my conversation with the oncologists about whether chemo would reduce the chance of recurrence was basically tabled once the FISH test came back with HER2+ for my right breast IDC. Because the HER2-targeted drugs have only ever been trialed with chemotherapy, that result meant neoadjuvant chemo for me.
Now that I'm well down the pike, I have realized that I should have asked more questions about chemo and the left HER2- side. It's a mucinous type invasive cancer, which is rare -- meaning there's also less known about it. From what I had read at the time of the treatment plan presentation, I understood that pure mucinous cancers (90% or so of the cancer cells are floating in / surrounded by pools of mucin, a key ingredient in mucus) are slower to spread, so I didn't worry much about it. But since they've said my mid-chemo MRI was "stable" -- no growth, but no shrinkage -- I've done a bit more research, and I wonder if I should have asked to have the left lump removed pre-chemo, since ER+/HER2- tumors with no lymph node involvement typically aren't very responsive to chemo. Of course, surgery on the left breast would have delayed the start of chemo, beyond my already long 70+ days between diagnosis and treatment. Since the right side is larger and has extensive DCIS and possibly LCIS in addition to the IDC, shrinking that side with the HER2-targeted drugs is the focus. I just have to find peace in that "stable" result and think of the chemo killing off any cells that try to break out.
From what I know, recurrence risk scores for bilateral breast cancer are entirely guesswork. The US breast cancer surgeon I spoke to back in May suggested that synchronous bilateral breast cancer increases the risk of recurrence by some unknown factor. Having different types of tumors, as I do, increases it much more -- they think. There are just too few cases to be able to say anything statistically significant. I am totally expecting them to say that they have no idea how to run my case through NHS Predict or another algorithm.
@Kip Again from what I know, risk of recurrence for local/regional breast cancer -- meaning in breast and nearby lymph nodes only -- depends a lot on the receptors found in the breast. Early ER+ breast cancer typically has better than 50:50 odds of recurrence, if hormone therapy is taken, since it can be taken for many years. Some of the women sharing recurrence scores on other threads are mentioning figures like 80% or 90% predicted survival/no evidence of disease at 10 years (basically the furthest out they can predict because treatments continue to evolve quickly) -- and getting an extra 1% to 3.5% from adjuvant radiotherapy. But recurrence chance depends entirely on the specifics of each individual case -- tumor size, tumor grade, receptors, KI67 status (which I don't know), extent of lymph node involvement/micromets, chemo regime, etc. It all gets plugged into the algorithm.
@cdc I got progesterone receptor results for my biopsied tumors (left 4/8, right 6/8), but right now most hormone therapy is focused on estrogen. Apparently, having a strong PR score and a strong ER score means your tumor will likely respond more strongly to this therapy, because they are linked. See: https://scienceblog.cancerresearchuk.org/2015/07/08/solving-a-breast-cancer-mystery-why-do-double-po...
My breast cancer nurse told me outright that because I am ER+, my PR results had no effect on my treatment plan.
One thing on immediate reconstruction: I've been counseled that if I need radiotherapy, I should very seriously lean toward delayed reconstruction. First, it takes longer to heal from reconstruction, and you can't start rads until you're healed. Second, the radiation can cause changes in both the skin and breast tissue that affect the reconstruction enough to require a new reconstruction later. (There's at least one study that suggests reconstruction complications are not significantly affected by radiotherapy, but doctors tend to be cautious.) It's frustrating, as my psychological preference is for immediate reconstrucution -- to get it done and to avoid yet more surgery -- all the more so since they advise waiting about 12 months after rads before having delayed reconstruction. But thought I'd mention it in case it hasn't come up yet in your conversations, as there may be some pushback on immediate reconstruction if they want you to have radiotherapy to, say, the chest wall and you agree to that course of treatment.
@Georgie UGH! The car thing is a drag. Glad your insurance company is stepping up.
Oh dear Georgie Gee not what you needed is it. Glad you are getting the car sorted though and I guess as you say it pales into insignificance with everything else. Hope the PICC is all ok and that chemo goes ahead to plan.
CDC - I haven't seen what box my ONC ticked, but as they keep saying "belts and braces" I am guessing its curative (or telling myself it is anyway)... they've not mentioned anything otherwise. All I know is its Grade 2, 55mm and had micromets in first 3 nodes and that I would "benefit" from chemo.. whatever that means. My surgeon was pretty adamant she wasn't expecting to find anything in the nodes they are removing, but that its preventative. I also haven't been given a number in terms of reocurrence... nobody has mentioned anything about it, on the one hand I would like to know but on the other... not sure I could get it out of my head if it was high risk? I did read somewhere where somebody quite wisely said "we all have the same risk... 50:50.. it either returns or it doesn't" which I guess is quite right. Tingly is still tingly... although not quite so bad, or I have just got used to it, its just sort of numb and then every so often I get pins and needles feeling in hand and up arm but it goes in a few seconds. It doesn't affect me doing anything so if it stays that way I can put up with it I guess. Larry tongue is all but gone and taste buds back which is fabulous but not helping with the attempt to eat healthier as I now want to eat everying I couldnt taste before!
Its good to hear you haven't suffered with sickness on the Paxitaxel, thats a bonus, will you get the red face on every one? The tiredness still continues for me, although I do feel pretty good otherwise and am attacking the hula hoop every morning again...my jeans were getting tight yesterday so I need to do something!!
My OH has a friend at work who's wife has just been diagnosed with BC (the third lady in his office since my diagnosis!) and I couldn't stop thinking about her last night. She had her first appointment yesterday where she got the dreaded news and is now waiting for an MRI scan before her treatment can be planned, she is still waiting to find out if she is HER2 aswell, it took me right back to April and that awful day...its so sad to think every day somewhere people are getting told they have cancer...my hubby talked to her OH and told him its the worst time at the beginning.. but I remember not believing it when people told me that so I could only imagine how she was feeling. Made me feel sick to the stomach to think about.
Well at the least the sun is shining here, washing is out and chocolate muffins made....more calories for me to eat... take care all and good luck for chemo tomorrow.
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.