Chemo went smoothly and to time so I was home by 2pm! Neutrophils were over 5 which is the highest they've been oven all the cycles! Heamoglobin and platelets were lower but no one seemed bothered! Dose was reduced by 20% which I guess was to do with the numb heel conversation. Only one more to go!
Another oncologist came to see me regarding pain medication and rather than codeine she's given me Naxopren which appears to work on flu like symptoms and should prevent so much pain. Don't know how happy I am about that, but she was adamant. Have to start taking them tomorrow evening. Still have Oralmorph though. Guess if it doesn't work I shall have to phone and ask for stronger painkillers.
In anticipation of being able to have my three days in Belgium in November and it being cold I started knitting a wacky hat today! Bit of a first for me - I've usually got so much hair I don't need the extra coverage!
Kit - glad you felt like baking. I find it really therapeutic, have to give a lot away though, there's a limit how much me and DH can eat!
CDC - deffo get the redness checked out, better to be cautious.
OOH in a day of strange feelings.... forgot to tell you... went to the bathroom, looked in the mirror and thought "hmmm something looks even weirder than usual" and then realised.. completely have no left eyebrow! When did that happen? OMG... I'd only just mastered in filling in the blank bits now have to learn how to draw a complete eyebrow... right one still just about there! Blooming T.. gives with one hand and takes with the other.
Sorry ladies... having a very odd day today...but strangely its makin me smile!
yay good news Kell.
Reddi - good to hear you are finding the positives....certainly a good way to think that it not show massive reduction but also it hasn't grown! Exactly!! and good to hear you are back on track with the chemo. The old liver is doing its stuff. I'm not sure of the levels of mine liver when I had the issue, I think it was 80 and they stil went ahead! Oh well I'm still here... and actually ladies have to report that I feel pretty darn good today, day 10 and feeling well. Tongue coming back to life I think, still feels burnt but much much better. I even baked a cake today, havent done that for ages but don't know if I can taste it later but still felt good to do it.
I had another strange feeling today... my boss rang me to say that he is expanding his business (at present just him and me and another lady who job share so both part time) he wanted to mention to me that after christmas/early spring he is employing another surveyor and may offter me more hours. Now thats lovely but all of a sudden I had this weird feeling of... well at the moment I don't know where I'l be in terms of recovery, and what lies ahead, and then part of me was thinking this is great I'l be moving forward. I kind of almost feel scared to think ahead.. thankfully he understands whats happenign and isn't pushing me to decide until much much later but was still a weird one... thinking about the future... hmmmm don't know how that feels but I guess we have to think ahead and make plans don't we.
@cdc I was going to write exactly as Shi did, to say you should get the redness checked out -- she beat me to it! One of the women at my Look Good, Feel Better workshop mentioned having redness after docetaxel, and they ended up changing her to paclitaxel because it was an allergic reaction.
Just back from meeting with the oncologist, and I've been cleared for my first TPH. Hurrah! Liver enzymes are recovering -- ALT is not yet in the 10-40 normal range for women, but at 67 it's in the safe zone for T (versus my original, late August level of 260). So Perjeta and Herceptin tomorrow, followed by docetaxel on Friday, as my chemo day unit spreads the first cycle of TPH over 2 days.
Sadly, my neutrophils had rebounded nicely to 4+ in late August -- certainly because of the booster pack of GCSF injections I got when I had the redness/swelling/pain in my wrist -- but have slid back down to 2.65. I'm putting good odds that I become neutropenic again this cycle -- though of course I'll only know that I'm neutropenic if I get some sort of infection or other problem.
And I've also heard that my mid-chemo MRI shows no appreciable changes in my tumors. I knew this was a possibilty; some tumors respond to FEC, others to T, and they don't know why (which is the whole point of the Rosco trial). But I thought I could feel some reduction in the left breast lesion. Oh, well. I've decided to absorb this news as *nothing has grown* -- which is something, too. And now I get to start my HER2-targeted drugs, which should have a significant effect on the right breast IDC and DCIS. (Not sure it will do anything to the LCIS, however...)
Oh, and I've also heard back that I've tested negative for disease-causing mutations in BRCA1, BRCA2, and PALB2. I won't get the full report from the geneticist until next week, as she's on annual leave, but will throw this data into my surgery decision-making folder for pondering in the next 12 weeks.
I'll need to read up on others' posts to respond properly -- which I'll do later. Now need to drink my celebratory detox smoothie and eat some lunch!
Hello CDC - yayy well done on both the PICC and the first T. Lets hope the sickness stays away and you don't have to deal with that. I am now day 10 and feeling pretty good, this cycle has definately been easier so far than the first one. I guess being prepared and having all the meds in place helps. Mouth isn't slimy anymore! but still feels like its been burnt on a hot cuppa, so not quite right but definately improving, hoping for some tasty treats at the weekend. Your daughter being 10 and having big emotions made me smile, mine is 13 and over the summer holidays has grown up immensely, now has a boyfriend. OMG and wants her hair dyed! Not sure I like htis grown up version, preferred the little girl who loved dollies!
Kell - good luck for those results today, fingers crossed for you that bad ole chemo has blasted away!
I'm going to try my ONC nurse again to discuss the numb thumb... I tried yesterday and got a very ominous voicemail saying "Due to unforeseen circumtances Rachel is not available"... so had nobody to talk to.!
KTK hope things still ok with you, and all you other ladies out there....have a good fairly SE free day!
Oh and managed 10 minutes on the hula hoop this morning... it felt good! I need to find my waistline again!
I got my PIcC line yesterday too KellP. Immediately after they checked everything was in the right place I had my first dose of T. It was so easy. I even fell asleep until I woke myself up snoring! I do hope all goes well today with your results. Must be nerve-racking as theyre first one since you started treatment. Here’s hoping for good news. It’s encoursging that you can feel a difference in your boob. It’s lovely having such support from everyone on the forum isn’t it? I too have learnt so much and thank everyone for sharing heir experiences and tips.
Well I feel remarkably chipper after my first dose of T. I think the LOrazepam they gave me for the anticipatory nausea really helped. Will see how I feel on route to the hospital again today to get my PIcC line checked. They are also going to teach my friend (a former nurse) how to change the dressing and flush the line. Extraordinarily the lady that got all the things ready that we’ll need to change te dressing etc.. has put three lots of chloro-prep impregnated sponged in my Take home bag - that’s despite me having red wrist bands showing I’m highky allergic to the stuff, oh well presume they can give us an alternative today.
So far no nausea but I’m still dosed up to the eyeballs on anti-sickness meds. My hip bone feels a bit sore so I’ve taken some ibuprofen. Mouth ok but I know it’s early days so I’m just off to do a salt mouth wash.
ktk Hope you enjoy the Life Kitchen today.
There does appear to be some evidence that the active ingredient in Claritin (loradatine I believe) helps with the pain from the GSCF injections and also Herceptin. So as I'm having both of those I decided to give the anti histamine a whirl so that if it lessens those two things I might cope better with the T. Dunno if it'll work though.
KTK - glad you are doing ok! The tiredness makes things difficult though doesn't it, but I'm still walking everyday... got to get that weight off somehow!
LJ - I have numb thumb but not feet, am going to find out if they are going to reduce the last dose for me too, I don't want permanent numbness!
CDC - that is such goods new that the new ONC was fab... makes a whole lot of difference when you get listened to! Interesting to hear about the dense tissue, I am definately going to find out if I can have MRIs in the future. I am so hoping you don't get any sickness with the T, you've dealt with so much of that already. I haven't had any so far, so fingers crossed for you, and I was warned about body pains etc, but so far, thats been minimal too, paracetomol twice a day for 2 days and it was fine. Today, I have the numb thumb issue and sore tongue, but even that is much better, no large whiteness and ulcers so hoping taste buds will reconnect sometime soon! I think the tiredness has accumulated over time, I guess you get used to not feeling 100% after a while, but the sleep was better last night. The big dose of steroids wasn't great on first cycle but was ok this time round, I have 8 day before chemo, 8 day of and 8 day after and then 4 a day for 3 days... actually OH was painting the lounge all weekend so didn't see him so that might have helped with the lack of fall out !!! And as for the hair, mine is definately thickening up so I would imagine your fluff won't be going anywhere on the T either! Interestingly eyebrows departting and eyelashes too!
I had a positive meeting today with one of my oncologist's registrars. She'd properly read my notes and knew all about my stay in hospital. Because of the severity of bone pain I had they will prescribe codiene and oralmorph as part of my take home meds on Wednesday. She's also going to talk to the oncologist about my numb heels which might result in a reduced dose. She was interested in my view, that if at this stage of FEC we termed my recovery as 100%, then I feel that at this stage of T I'm only at 85-90%. Both DH and I came away happy.
Ive started taking anti-histamine tablets today in the hope it may help and salt water mouth washes too to keep my mouth as clear as possible.
Roll on Wednesday- am dreading it, but need to get it over and done with!
Lisa just realised I never responded to your photo-. You look amazing especially your eyes. I think not having any hair makes people notice you facial features. I’m having to go bald a lot more at the moment as everything I wear is irritating my scalp,and making my head feel really hot,too. I’m getting more used to it
. It’s other people’s problem if they stare not mine. Two of my friends, who I haven’t seen for over two years as they now live in the south of France sent me a message to say they thought I looked ‘happy and pretty’ when we met up at the weekend. I’ve rarely been called pretty before!
I definitely have downy fluff growing but presume this will go again on T. Will just have to wait and see!
Take care xx
Apologies to those also on the May surgery thread as this is a virtual copy of a reply have written on there.
i’ve felt tearful today thinking about my cousin. I sort of understand my geneticists remarks when I said it was great that I did not have the BRCA 1or 2 or PALB mutation, She said ‘yes but unfortunately you don’t have an explanation and something is going on with your family and we don’t know what it is’. I’m hoping having my genome mapped on the 100 genome study will reveal the information my family need to know how to progress in terms of chemo-prevention - taking tamoxifen as a preventative, or prophylactic mastectomies . However. I am unlikely to get the results for a number of years but hopefully this will be informative for my nieces and cousins and my own daughter.
I cannot tell you the relief at seeing my new oncologist. It was like a masterclass in how you should talk and listen to a patient. I was with him for a full hour and discussed many issues that were not even his area of expertise but he understood the need for me to talk through my experiences. He has signposted me to who can help with each concern. He also asked the Clinical Nurse who was sitting in on the appointment to arrange a meeting amongst various experts to check through my mammogram and ultrasound screening results for the last 8 year. He feels there may be an issue with the radiography department. He also said there is an ongoing discussion in the International panels dealing with screening for BC as to whether additional screening should be offered to those withnvery dense breast tissue. My OH and I are doing our own research into the studies that have been commisoned so far. Im going to demand ultrasounds in addition to my mammograms in future at least Kip! My surgeon is putting the case forward for me to have yearly MRIs
Im feeling less anxious about starting T chemo regime tomorrow. I will be having another drug called Lorazepam which should reduce my anticipatory nausea. Onc has also said he’s happy for me to take Ondansateon and domperidome for as long as I feel they’re helpful as neither has any associated toxicity. I’ll also get the Emend/aprepitant during the chemo itself them two days after Will ask about the Fluxonole, very useful to know. Fingers crossed. My Oncologist is also hopeful I’ll be less nauseous on my next regime although he did say that I’m likely to be very fatigued and get bone pain! He has also said I can use ibuprofen for aches and pains. Will have to see how Infar on the steroids but it looks like i’ll Have three days on a very high dose and will continue to take them at smaller and smaller doses for a few days after that. I’ll be on them for longer but the gradual reduction should prevent steroid crash I’ve experienced before,
Oh well what will be will be and it’s good to have another cycle under the belt and then its just 3 to go thank goodness!
Wonder if i’ll be enjoying ‘carpet’ sausage rolls this time next week although mine will have to be the veggie version! Not that I’ll be able to notice anyway.
Hugs to everyone xxx
Take Care xx
PS I will be devouring a box of luxury chocolates this evening as a farewell to my tastebuds functioning properly!
Hi CDC, the issue around dense breasts is worrying isn't it. I was told at my mammogram that my tissue was dense due to being "young" so they had to do an ultrasound to see what was going on, I am concerned that in the future they will only offer mammograms as a check up? Do you know what they do? So sorry to hear about your cousin, but so glad she did go and get checked, its crazy how many young women are finding themselves in this position isn't it. Whats happening with the world?
As for the T - I haven't had any nausea with these ones, and I have heard several people say the same. I still get the anti-sickness ONdestron to take for 2 days and then I have the metrocolampide as and when stuff too, but have never had to take any of them. Although I have had the extra steroids I haven't had such a downer this time, and the mouth hasn't been to bad. See if you can get Fluxonole to take, I have one tablet a day to prevent mouth thrush and although I have limited taste and slimy tongue it has helped to take it as soon as the mouth started and not wait like last cycle. I also regullary swish with salt water and Difflam too, not sure if any of this helps but it seems to. I haven't had any ulcers or anything. Yesterday I had achy legs, but manageable and took paracetomal and the tiredness hit last night, but actually although the side effects are there, they are ok, numb fingers worrying though as don't want that to be permanent. I would say the first T cycle was definately harder but this time seems to be ok, day 8 now so hoping some taste may return shortly... now eating a "carpet" sausage roll! Still hungry.
Sorry I haven’t been on the forum for the last few days. OH was away and I decided to go down to see my Mum with my daughter. Trying to enjoy my last weekend before my first T but have a bit of anticipatory nausea just thinking of having tho head to the hospital tomorrow for bloods and to see onc and then again om Tuesday for PICC line and first dose. I hope everyone is doing ok. Are the blood clots more common on T? I’ve been warned about tingly fingers, changes in taste of food etc..Also that I may still get nauseous- noooooooooooooooo! Anything but that. Does everyone get given anti-sickness meds as a precaution? I’m hoping my new Onc will shed some light tomorrow. Not looking forward to starting the extra large doses of steroids but I know they’re necessary to prevent allergic reactions.
I’m feeling very low tonight. My Mum has just told me that my cousin ((her sister (who has also had BC)’s middle daughter)) has been diagnosed with breast cancer. We have lost touch over the years but I’m just so sad for her. She’s in her early 40s with two young children, She decided to take herself to get checked out because of my diagnosis, They initially said she had signs of calcification so did a biopsy. When the results came back they confirmed fast growing cells (I’m not sure what sort of BC she has) and she was told that had she left it till next year it would have been too late. She is an extremely private person so not sure what I can do to help but I asked my Mum to pass on the details of this website so I hope she can get some support online even if she can’t talk to her family/friends, I also discovered my younger sister has been told she has dense breast tissue, I’ve been doing a lot of research recently as I firmly believe women should be told if they have dense tissue if it shows up on a mammogram. Recent research in USA and Norway has said that dense breast tissue is much more of a risk factor than familial history. In 32 states in America it is a legal requirement to tell a woman if dense breast tissue has been found, I was advised to go on chemo-prevention last year due to my family history. No one ever mentioned the danger of dense breasts - not only is it harder to spot during screening but the fact there is more tissue means there are more places for he cancer to develop. What I did not know is that taking tamoxifen as a precaution can resduce the density of tissue and therefore your risk. I felt so bad, (‘guilty’ In a way that it’s my fault I have cancer)that I didn’t take up the offer but my GP had never heard of tamoxifen being used in this way and didn’t think it was a great idea to take it as it can cause womb cancer! My BCN has assured me it wouldn’t have made a significant difference. It’s been making me very angry and upset. I am trying to alert as many people as possible to the issue of dense breasts. At least it is now listed as a significant risk factor on the NHS website, I am also going to contact Breastcancercare as it is not listed as a high risk factor even on this site.
Are most of you finished or nearly finished on the T? I’m feeling daunted at the prospect of 3 more months on the stuff but thanks to everyone sharing their experiences at least I have some idea what to expect. Thank you xxx
Hi all, well day 7 of second T cycle and have to say this one not so bad as 1st. Finished injections last night and today was first morning i ached in legs, took paracetamol and thats really helped. Mouth still slimy with not much taste but no ulcers or sore throat yet! Fjnished steroids on Friday and havent experienced such a downer either, did fall out witn kids this morning and shed a few tears but not as bad as some cycles. Other thjng is numb thumb and forefinger, will call onc nurse tomorrow as they wanted to know if it got worse so they can adjust the dose of last T. Bjt worried whether thats ok to do but guesss they are the experts. Dont want permanent numb fingers. Anyone else having that?
Still trying to find food that tastes good, craving a roast dinner but cant be bothered to cook it when it will taste like carpet! Back to soup again i guess. Daughter just baked a chocolate, peanut butter and popcorn cake which looks and smells devine but im sure will taste like lard to me... Boo hoo... I am so gojng to eat when taste buds turn up!
Enjoy your day everyone
I've just had a read of phlebitis and that sounds just like what I have in my chemo arm I the area I had the dvt. Unfortunately everything I read said to take aspirin or ibuprofen. I'm on clexane and it says I must not take aspirin or ibuprofen.
Thanks Lisa Marie ill havd a read. I have flux stuff too, 1 a day for 10 days, so far no ulcers! Glad no clots for you! Go enjoy the ice-cream
Well done Sally, another ticked off.. go enjoy the sweet stuff.
Lisa Marie - thanks for the info, my ONC said to let them know if it gets worse and they may drop the dose of the last T to try to alleviate the finger stuff. Its a strange feeling, nail feels like its been jammed in car door and the pad of my thumb feels like is stung by a stingy nettle. I'll see how it goes over weekend and may call them on Monday... its just one thing after another. I found tinned macaroni cheese at lunchtime was bearable, didn't taste of much but slipped down anyway...how I long for something salty and nice! Good luck with the appointments.