Thank you Ebim. I will be holding your hand on Wednesday and the hands of all tax warrior teddies going through it this week. Thank you Dawn for your really helpful post. I’m off to the hospital soon for blood test and clinic. Feeling nervous although I shouldnt be as now I have a picc there are no issues with finding a vein for blood test. I think it’s just that I always get a bit depressed and anxious in chemo week. I shall just focus on holding your hands. R x
Ebim sadly I have another 3 weeks to go before joining warrior ranks…in the meantime I feel like a very tired warrior… this 4th EC really did me in. Maybe it’s the half way thing as so many of you have mentioned. Or it may be that I had start of a cold which has knocked me for six. Had been able to cope with EC side efffects but so so tired now so rather dreading Tax if the tiredness is even worse!
Dawn thanks for your really helpful post. I don’t have a PICC but have been using hirudoid and there has been some improvement in the tightness in my painful arm although I do have a bit of pitting in it I noticed. Does this get better? I already have joint pains during the gcsf jabs which I take every cycle - does it tend to be worse with Tax?
Sorry for moaning on. Finding it hard to stay positive right now with fatigue, and feeling guilty about having to be lying in bed when kids are on holiday - feel like I ought to be out doing things with them.
Big good luck to all starting Tax this week.
Egg x
Dawn,
Thank you for coming back and supporting us January ladies so effectively.
Ali - where are you ?? You must be around half way too, how is it for you ?
Slowski X
Thanks Ebim for your kind words. Having ingrown hairs removed doesn’t sound like fun either! I keep telling myself things will get better and like the September ladies in 3 or 4 months the worst of this will be behind us. Yes you are right plenty of time to make it up to kids but I do feel bad for them as they are not used to seeing their normally hyperactive mummy lying on the couch like a potato!
Afternoon - just recovered from the shock of today’s radiotherapy appointment being on time. No traffic hold ups either, did the round trip in 2 hours which is a record.
Ebim - yes I did care for my toenails as well as my fingernails. My eyelashes seem to have grown back in a funny way too (they don’t look the same as before), but I don’t think I have any ingrown ones. I still have itchy, runny eyes though from time to time, and Optrex is still my friend.
Egg - FEC and EC are very hard on your veins (It is apparently the Epirubicin that does it) so after four of them it is not surprising they are suffering now. If you have 3 weeks before the next infusion there should be enough time for the veins to recover if you keep applying the cream the maximum 4 times a day. The question is whether they will hold up throughout the remaining cycles, because I found they took longer to recover with each successive cannulation. I only had 3 cycles of the Tax, Herceptin and Perjeta combination, and I had the lot in one go each time (= one cannulation per cycle, bloods taken from same prior to treatment). You are having 4 cycles each over 2 days (= 2 cannulations per cycle, assuming the Herceptin and Perjeta are IV rather than SC, plus bloods probably separately). It is therefore going to be a lot harder on your veins than it was on mine. As I was having neo-adjuvant chemotherapy, the nurses were also able to alternate arms each time, allowing a longer time for recovery. They were also very good at cannulation and didn’t botch a single one (sadly the same cannot be said of the MRI technician!). If you have already had surgery, the nurses won’t want to use the arm on that side because of the possible increased risk of lymphoedema. I suggest you see how things go over the next couple of weeks or so, after applying the cream. If your veins are still a bit iffy a few days before the next treatment, contact your unit and talk to them about it. If there is any doubt about whether your veins will hold up over the remaining cycles, it may be best to have a PICC put in now if they’ll do it. Unfortunately, the tiredness probably will get worse with each new cycle, but this is because all chemotherapy causes fatigue, and it is cumulative, rather than because the Tax is necessarily any worse than EC.
Good afternoon all my chemo friends.
Thank you all for your uplifting messages.
Dawn, it is so good to have youexpertise and experience here.
All of us seem to be floundering a bit at present.
I was really excited to get number 4 under my belt …but as I said, it’s knocked me sideways.
Today, day 11 I have finally gootten rid of the nausea, but I have a question.
Does anyone know if shortness of breath is a side effect of chemo? Specifically TC?
I took the dogs out this morning, and after about 30 paces my legs from the hips down felt like lead, and I was very short of breath - like when I used to get asthma.
Same going upstairs.
Should I be worried about it and haul myself off to A & E, or wait ill my next onc appointment on 7 April?
My love and hugs to all of you - wherever you are in your cycle.
Hi Jackie
I remember Onc telling me you might get breathless if anaemic. And without EC it can affect your heart (not sure if the same for TC) so again he said be mindful of breathlessness. So tricky to tell as it could also be tiredness. But 7th April seems a long time to wait so I would be inlcined to give your team a call if you can get hold of them.
Egg xx
Jackie - breathlessness and fatigue do appear to be common side effects of TC, and could be caused by either drug or both (I had some breathing issues and a dry cough with Tax). The nausea is most likely to be caused by the Cyclophosphamide, because Tax on its own doesn’t usually make people sick. See: cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/TC
I agree with Egg that it’s best to call your unit before the next treatment if the breathing difficulties are causing you distress; they need to know.
Egg and Dawn
Thank you for your replies.
I’m in Spain and don’t have a clinic, so hubby will take me to A n E tomorrow morning.
According to Doctor Google it’s likely to be low red blood count.
Can’t win.
Last time it was low white so I’m on GCSF injections.
I can’t face another hospital stay
I’ll let you know how I get on.
Xxxx
Dawn
Thank you for the link.
I wish I’d seen this ages ago.
Xxxxx
Evening everyone, I am just reporting back on today and this could be of interest to your issues Jackie.
I told the nurses that I had been feeling breathless when going up hill etc and for the past couple of weeks I have been having little flutters/palpitations that make me cough. I had an ECG and they said it needs to be reviewed by a cardiologist but there wasn’t one available today so I have an appointment on Friday. The nurses said it was the Epirubicin that is the one that can affect your heart. I was talking to someone who finished treatment and she said she had been breathless but it went away once she stopped chemo. Meanwhile, as a result, Tax 1 was cancelled after 5 hours at the hospital and rescheduled for next Monday, all being well.
Jackie, I would say you should make contact sooner with your onc. In case he wants any tests before next session.
Those Mothers Day cream cakes I avoided? I ate 4 when I got home. Probably got furred arteries too now.
I also have a strange cording down my chemo arm that the nurses stared at and said they hadn’t seen before, it is not tracking the line of a vein they don’t think. I am being cannulated each time, by choice. It must be related to chemo as it started after cycle 3. So much for boasting my SEs were mild and manageable!
they said see my GP but I don’t hold out much hope that he will know what it is. Any ideas?
good luck Ebim on Wednesday, thinking of you.
thanks Beedot x
Oh beedot I’m sorry your cycle got delayed. But better to be safe and get everything checked. I know how frustrating it is though. Your arm sounds like mine. Mine doesn’t follow the veins either - but I have been using the hirudoid cream and the pain is not as bad now even though it is still pitted - so might be worth giving it a go if you haven’t already? And to h**l with the cream cakes! Have another one!! We have to enjoy something!
Hope all turns out ok with ECG
Egg x
I should have mentioned that the cough and breathing problems I had were temporary and stopped after chemotherapy finished, so they must have been SEs of the Tax (my asthma won’t have helped). It wasn’t anything to do with my heart anyway. I had ECGs during chemotherapy and no problems were identified, nor in my last echocardiogram in January. HER2+ ladies note - once you start having Herceptin they will be monitoring your heart, because it can cause damage. I am now on Herceptin injections only, and I have an echocardiogram every three months.
Beedot, Egg and anyone else not on Tax yet - eat as many cream cakes as you can now while you still fancy them. The Tax will play havoc with your appetite and taste.
Thanks Egg and Old Dawn.
Egg, the arm cording is exactly as you describe, it is a long pit or skinny furrow running from my wrist diagonally up my arm that only hurts when I fully stretch my arm, I can feel it pulling then. I will try the hirudoid cream. What would we do without this forum!
Beedot. X
Hope all goes well for you today ebim. X
Sorry to hear of your delay beedot - it’s easy for me to say, but it really is for the best if your team have doubts and want to make sure you’re up for treatment. Frustrating and upsetting though to be delayed by a week. Hope the test comes back clear.
I have been reading a blog by a young woman with breast cancer - I initially went on it to look at her cold cap experience and photos related to that ( to try and gauge where I might be with my hair after each session!) and I came across photos of the vein problems she was having in her arm from FEC and it looks like what you describe beedot and egg. I’ll try and post a link - hers did improve but it took a while.
I’m in my good week now, so it’s work for me and a coffee/lunch with friends date. And a 10 year olds birthday party!!
Hope everyone else is OK?
Steroid insomnia grrrrr. Been awake for hours. Getting chemoed today along with Ebim, new chemo buddy. Will be holding your metaphorical hand Ebim. Mooney, how did your first dose of Tax go. Beedot sorry to hear about your delays - so frustrating. It’s my second Tax today and fifth chemo. I thought by this stage I would be feeling more excited about the end in sight but it seems to have been going on so long (since Jan 4th ) I just don’t seen able to. The nurse on Monday at clinic was quite concerned about my red chemo burn arm - all I could say was it’s been looking a lot worse than that, it’s practically gone now compared to what it was! Thank goodness for picc line which will get its second use today. R x
Good luck today Robin and Ebim. Tax 2 for me on Friday. I know what you mean about it dragging. I think I’ve had the mid point blues!
Good luck today Robin.