DiKat yes had first THP yesterday with reduces dose of dositaxil. Then scan. My doctor just phoned in a panic as they saw the blood results on their system and wanted to be sure onc had picked up on it. She said they were looking for cancer spread but as LFT results had reduced from Friday to Monday it's unlikely. Something else to worry about though even though I shouldn't. Going to a support group class tonight with local Bosom Friends about eat well and feel better so hopefully that will be a lift to my mood of doom. Also going to call cancer nurse with some questions. Been awake half the night as I was after first FEC. It's the not knowing what's coming that freaks me out. Weird that all the steiroids they give you pre THP are to lower your immune system so that you don't reject the dositaxil lol. After all the work to keep the immune system high. What are they doing to our bodies. When is your first THP now? ♥
it's lesions not legions and it's medical jargon for 'thing'. Can be absolutely anything, benign as well as malignant.
Yes, I agree that it’s important to have all the facts as frightening as it may be! I know it’s easy for me to say but try and remain positive from the fact that he didn’t see anything. My liver bloods were all over the place after my first Fec, looked like I was an alcoholic...oh to be sat on a beach 🏖 drinking cocktails 🍸, but have been fine since...maybe the reduced dose made the difference in my case. So have you had first THP or is it later this week? X
Epson salts sound like a plan. Will also get some tomorrow. Went for liver / kidney scan and scan, scan man said he was looking for legions when chemo ward said looking for stones. The truth versus what cancer care want you to think. He didn't find anything bit said ultra sound can miss things and that there will be a follow up. **bleep** scared this is secondary. Going to call help line tomorrow and ask for a straight answer. Feels like cancer care are fobbing me off to keep me positive but I want the truth. Legions sounds like such a bad thing. Hooefully fact that he couldn't see anything us a good sign. Sigh. Does it end well, all this?
Thanks Kitkat18, that's really useful information x
Thanks Shi, yes have a big bag of Epsom salts next to my bath and can always rely on you to make me laugh 😘
Dikat have you tried Epsom salt baths, they’ve been a big go to for bone pain on the t throughout the threads? Worth a try darling😘😘keep 💪💪💪amazing lady, that chemo bell is in sight and ring the clanger off it 💃🏻💃🏻🕺🕺💃🏻💃🏻 Time for a bit of music in the jukebox, bit of starship, we built this city 💃🏻💃🏻🕺🕺💃🏻💃🏻Now up in your kitchens, dance like 🤪🤪🤪🤪and tell your loved ones Shi made us do it 😁💕💕💕✨✨✨Shi xx
Hi Dikat, sorry you have been having such a bad time - can you tolerate antihistamines as loratadine is often prescribed for filgrastim bone pain, especially in the US. I also got delayed a week before starting T due to bloods and it was such a relief to have an extra week to give my body a break x
I'd just been taking paracetamol and ibuprofen. I have to be careful cos of IBS and diverticular disease and can't tolerate codeine. Gives me severe spiny head and 🤮. Wow, you've had a long day. Hopefully the high liver enzymes are due to cumulative effects of FEC. I've also been having a lot of pain in the liver area so was surprised when my liver bloods were normal today. Onc had a feel and said thinks pain is probably more related to digestive issues. We're definitely being tested. Let us know how you get on later x
DiKat, that sounds horrid. Cant you take anything stronger for the pains? I think the Ts are going to cause more bone pain too so may be worth asking and being prepared. Still at the hospital. A full 9 to 5 day. Back at 7 for ultrasound on my liver because of the high enzyme count on my liver so see what that shows up. Hopefully nothing.
Glad you’ve got the go ahead Jayne. Let us know how you get on.
Ive been for bloods today and unfortunately my THP is being delayed by a week, now 27th Feb, as my neutrophils only 0.2 and hb is also low...no wonder I’m knackered! Although I’m disappointed I don’t feel physically strong enough so probably for the best. I had an ultrasound today, said showed slight shrinkage which disappointed me at the time. However, when I spoke to the Oncologist he said any shrinkage was positive. I haven’t posted about it on the forum but for the last month I’ve had awful pain in my back and right femur. The pain is gnawing and burning and of course I feared the worst because wouldn’t have expected it to continue so long, only when taking Filgrastim. I did ring the unit a couple of times about it and they told me to keep taking regular pain relief. I did....it didn’t really help! My anxiety levels have been through the roof and I’d been having so many dark thoughts which I couldn’t shake off. The Oncologist today said the Filgrastim can have this continuous effect and wasn’t concerned and that my bloods weren’t showing anything untoward. He offered me x-rays for reassurance which I had. He showed me that my bones were totally smooth and that they wouldn’t look that way if there was anything untoward, phew! That pesky Filgrastim...trouble is he says I will probably need to have more as the 5 don’t seem to be cutting it with my neutrophils being so low. Guess I’m just gonna have to grin and bear the pain. Hope everyone else is doing ok xx
Yay going ahead but with reduced dositaxil which feels like a win win to me !
All the best daffydilly, what a time you are having.
I'm at the hospital for my defrost dositaxil cocktail which I have been dreading, bit now they are doing extra blood tests as liver enzymes too high. I've gone from not wanting it to being really worried about a delay. 22April is my end date for last chemo and i don't want that date to move.
Thank you Shi. My three children have been brilliant and are taking it in turns to stay with me overnight this week. I’m so lucky they are all fairly local. DH had cat scan this am - she’s some inflammation in his lungs but no ominous masses anywhere( head to trunk). They think it’s a rare syndrome(rs3pe?) but needs more tests yet as to find root cause. He’s on oral morphine tonight as pain is so bad. Once we know what we’re dealing with I will try to look for further support as everyone has families and work to contend with. Just hope we all get some sleep tonight & perhaps tomorrow will look brighter.🤞
Love and hugs daffydilly xxx
Daffydilly ❤️❤️Try and speak to your local Macmillan to see if you can get some support and help for you while your husband is in hospital. You are putting everyone else ahead of yourself, which is what we all do automatically but you need to look after yourself. Someone reminded me when I was going through chemo, that you have to look after yourself first, so you are well enough to look after everyone else. It’s not selfish it was wise words from a great lady, so I’m sharing them with you my darling and sending you lots of ❤️❤️❤️👭👭👭👭💪💪💪💪💕💕💕✨✨✨✨Shi xx
So sorry Daffodil....
Sending you love and strength Daffydilly xx
Really struggling this morning. Think s/e kicking in( or too long sat on hospital chairs) as legs are really aching badly despite paracetamol and neurophen. Very little sleep last night as worrying about rest of family.
spoke to husband this morning and he’s not good. Consultant has seen him this am and has now prescribed morphine for him and is trying to get CT scan done today. Am going to see him this afternoon but need to pull myself together first and tears from me won’t help anyone.
So sorry to hear of your troubles piling on, Daffydilly. Hope husband is improving and at least they said they can treat it, although not sure what it is! Choice of 3? I guess they will narrow it down. Try to get some rest as this is all extra for you.
Thank you everyone. Family are rallying round. YS stayed with me last night. Just want answers now so we know what we’re dealing with. This first flared up week after my mx in October, then subsided after steroids till this week. Hard to believe we had a week camping with family last August with nothing wrong with either of us. How quickly things change!!
Daffydil,y hope you and your husband okay. Thinking of you both. You could both do without all this xxx
I am so sorry to read this. It seems that it never rains but pours. I really hope your husband will get better soon, and that you will not have the dressed side effects of T too badly this week. Take care of yourself and ask for help from friends and any family at this worrying time.
Fingers crossed for you that you are fine with the T side effects.
So sorry to hear about your husband. This must be such a worrying time for you. Stay strong, sending love and hugs xx
Gave up posting as seemed incapable of getting past the robot!! Hope you are all having a reasonably good weekend & enjoying the sunshine.
Not sure I’ll see much of it. Had 1st T on Thursday no s/ e yet but no doubt on their way😒 Yesterday my husband was blue lighted to a & e with suspected Neutropaenic sepsis and a bad flare-up of what we thought was rheumatoid arthritis. Turns out not and probably some obscure syndrome we’ve never heard of( choice of three I think). Neutrophil count only 0.3 so on I V antibiotics when I left him last night. Has to have lots of tests including full body ct scan, chest x-ray and who knows what else. Told he will be in for a week at least. His hands are so swollen and arms painful he really can’t do much at all. Was all right until cancer was mentioned as a possibility.Consultant assured me not like mine and can be dealt with. Back to a waiting game but not sure how to cope with both of us at same time. Takes an hour to get to hospital so will be an extra tiring week.
Wahini - reflexology is foot massage that uses the idea that different areas of the foot represent different parts of the body. It's linked to Eastern ideas of energy meridians and such like. If you don't like having your feet touched, then it's not for you! I like it, but find shiatsu more relaxing (that's acupressure - fully clothed massage same theory as acupuncture but no needles)
Thank you Rapunzel2018, I was curious about this.
I'm hoping to have some reiki also as I can't have the massage and acupuncture that the breast cancer haven were offering because of my blood clot. Also sceptical so hearing good things about this makes me think it may be worth it.
In three weeks I am booked for reflexogoly session, don't know what it is exactly but could be good for my hands on toes if I develop neuropathy problems?
I had a Reiki session, privately, not long after diagnosis in November. I too found it very relaxing. The Macmillan nurse has put me forward for some complimentary therapy for my anxiety, haven’t heard anything yet. Hopefully it will be Reiki!
I had a Reiki treatment on the NHS yesterday. I was a bit sceptical at first, there is no toutching just hoovering hands. But they must be doing something because I felt very relaxed after an hour of this and I slept much better last night. The girl who gave the Reiki said I looked very well but could feel lots of 'pulsating' in my body, I felt some twitching in my legs when her hands were by my legs and when they were by my head it got really hot. She felt that too and she advised me to take it easy and drink lots of water.
@DiKat - Your first Perjeta and first Herceptin are loading doses -- so larger doses, taking more time. The docetaxel (or paclitaxel) isn't a larger dose, however. My hospital gave first TPH over 2 days rather than giving it all in one go. Personally, I found each one was a bit harder; just the cumulative effect of all the chemo, I think, but also perhaps that TPH 2, 3, & 4 were very long days at the hospital, even with the shorter infusion times for subsequent doses of Perjeta and Herceptin.
@Jayne1966 - Thinking of you, and sending good vibes for the little stuff to get easier as well as the big stuff. I hope you're able to take it easy and get some good downtime whilst your kids are with their father.
Yes Jayne, know what you mean about getting first THP out of the way. Have seen on the threads further ahead that it’s often the first that’s worse as it’s a higher dose. Not sure if that is definitely the case, was that mentioned to you? What bad luck about your car but at least your day ended on a couple of positives! Enjoy your 4 days of being kid free, and don’t feel guilty, you deserve the break x
Had an ultrasound. Onc said I will have an MRI near the end. I wonder if it is a half way lull? Maybe feel better and more positive when only one or two sessions left. I think I will feel better when I know what this next cycle brings so I know what to expect.
Kids go to their dad's on Saturday for 4 days and it pains me to say I can't wait for the break. Just to rest my brain from having to look after them emotionally.
Went to the wrong hospital for a pelvic scan thus morning and then when trying to get to the right place my car broke down so had to get RAC out . Ffs does it ever end. Have taken mom out for a nice lunch though and feel ready for a nap now. Have also got myself a gardener today so that it might look nicer when I'm feeling like being outside. Ever onwards xx
Yes, the nurse said she is chasing this up for me.......got the first chemo under me belt....phew!! Xx
A heart scan is standard procedure before FEC because this combination of chemo drugs can (but does not have to) have an effect on the heart - so the scan is done to make sure your heart is fit and healthy.
All the best,
Re the F-question (one that troubled me for a long time, too): as far as I know, oncologists (in the UK and in other countries) (have started to) leave off the F from FEC partly because some consider this particular drug no longer as adding that much to the overall efficacy of chemo treatment (especially in relation to side effects) but also (and that may be the more important factor in many cases) because there is a need to reduce overall toxicity when a certain numer of cycles of EC (or similar combinations) is given in combination with a certain number of cycles of another chemo drug, such as (often) T. I tried to have F removed from my chemo at first, but then (after a lot of deliberation and following the advice of two different concologists) ended up starting with FEC (and I will probably continue with one of the Ts after 3 cycles of FEC).
Thanks Shi. Can always rely on your positivity and support 😘😘😘❤️❤️❤️
Dikat 😘😘😘💪💪💪💪the spectrum of emotions on this journey could never be put into words, just know all of them are ok, you don’t need to explain yourself to anyone or not let them out, we are here and you can share everything with us ❤️❤️Keep focused we’ve got you 👭👭I always found doing something that made me happy like watching my favourite 80’s movie or bit of drawing or if I’m completely honest lots of Amazon shopping gave me a boost on a blllaaahhh day, whatever it is, you treat yourself ❤️❤️💕💕✨✨Shi xx
Lots of hugs and good wishes, Jayne. The only way is up!
My husband wanted to say Happy Halloween, Oh I said is it because I look like a freak. No no he said, it is because it feels like it was only just Christmas. That makes no sense. BUSTED! We had a good laugh 😂
Thanks for the info Wahini. Hope you continue to feel ok and the redness calms down as the steroids reduce x
Hi DiKat, not pleasant for the nurses either, they don't like to hurt anyone so three of them had a go. In the end a 'baby needle' was successful, I will remeber for next time! I am not on Pertuzimab, just T & H. I think anti sickness drugs was in the T infusion but they didn't give me any to take home. I feel ok while I was very sick on FEC. The steroids are 2mg Dexamethasone and I take 4 twice a day for 3 days starting the day before chemo, after that a few more days lowering the doses. I think it is in the T infusion as well so the first night after is the worst. My face is very red now, looks like wind burn.
lovely to see you back. I guessed things would have been difficult for you and I’m sorry to hear it confirmed. I too have a teenage daughter who struggles with her mental health so can empathise on that one. It’s so hard to be supportive in general never mind when dealing with your own issues. It sounds like you’ve had it really tough and then to get the issues with your picc is a double whammy! I’m so pleased however that you’ve had some shrinkage. Did you have an ultrasound or MRI? Like you, I am anxious about THP and I’ve also been in a pretty bad place mentally. My body feels in a complete state of anxiety. I’m trying to put a brave face on and draw on all the coping mechanisms I’ve learnt over the years but struggling. I’m good at giving the advice to others though. I really feel like I don’t want to be around people. Maybe it’s normal at this stage of the chemo to feel like this. You kind of start out scared but positive so perhaps it’s just a half way lull. I look pretty crap now too...skin colour not great and way too thin so that doesn’t help. Anyway, enough moaning, we can and will get through this. Sending lots of love xx
ouch 6 attempts, that must have been difficult for you, Glad they got it eventually and it went ok after that. Know what you mean about sore arms from FEC. It happens to me about 2 wks after the infusion. I’m due to move on to T next Wednesday with Herceptin and Pertuzimab (not sure how to spell it) have you just had the T & H? What dose of steroids did you have beforehand? Did you still need anti sickness? I had Emend before FEC x
Hi Jane, good to see you back here, I hope it helps to get things of your chest. I had my docetaxil (T) cycle yesterday and once the needle was in place it only took one hour and the Herceptyn injection in the thigh only 5 minutes. So far I don't feel any serious side effects except for trouble sleeping, I suppose from being pumped with steroids. So it probably will be less worse than you expect. Take care x
Drumnerswidow, I struggle with depression anyway so am already on tablets. Trying to use all the techniques I've learned over the years to keep it at bay. Not easy but got to try right? Take every good minute to the max. We can all get through this together no matter how bad. Ha ha listen to me preach!! Xx
sorry you are in such a bad place and struggling. I can empathise! Have you seen your gp maybe for some antidepressants ? I haven’t been on much as I am struggling too. Xx
All you amazing ladies,
i've not been on for ages. couldn't face reading what everyone is going through whilst trying to cope with my own situation. I have missed you all though. I've not read all the messages but will start again now if I can be motivated too.
So ... my daughter survived and is at home now. She is really struggling with her mental health and I'm really struggling to have enough emotions to be able to support her. Depression is knocking at my door and I'm not sure how to keep him out (not sure why depression is a he but still ...). I have a clot around my PICC line that the A&E failed topick up but the breast cancer nurses got me a scam pretty damn quick and I'm now on twice daily blood thinning injectionsfor 6 months. Good news is that both tumorus have shrunk. Right Grade 2 one about a quarter and left Grade 1 just a tiny bit, but oncologist is please.
Absolutely cacking myself for monday when I get the dosetaxil and herceptn and whatever the other one is. 6 hours ... argh. Has anyone had this yet ? So many steiroids to take the day before. I just want it all to be over now. Fed up of being so scared. My kids only have to sat they love me and I'm in floods of tears. Scared for them too and unable to have enough emotions tosupport them well. Feel like I'm failing even though I know I'm not. Was going to have massage and accupuncture at Haven but can have either now because of clot, Feels liek worls against me - altough I did find a tenner on the pavement so maybe the tide is turning.
Love to you all and hope everyone else feeling a bit brighter than I am xx
My fourth chemo cycle was problematic today as my veins didn't cooperate and my arm was already sore from the FEC cycles, it took six attempts. I felt like a pin cushion. Hopefully next time will go easier, T is supposed to be softer on the veins than FEC.
Marlyn - I got my heart scan 9am the morning I started chemo at 10:30am! They got the results through superfast.