Hey Mooney
SO God to see you back.
We were all getting worried.
You’ve had a rough time it seems so take it easy.
I know what you mean though.
I think we all just want to get this chemo over and done with.
Hugs from Spain. Xxx
Thank you all very much for your enthusiastic welcome back. it is lovely we have all got everyone’s back here. thankyou lovely ladies. xx
Welcome back Mooney!
Hi Mooney, glad you are OK. Hope you managed to get treatment today and all went well?
We haven’t heard from beedot for a while either…?
Welcome back Mooney!
Is Stefr out there too? And Star?
I’m also finishing early June too as 4 cycles of each. Although I was told that if we end up giving up towards the end of tax then it’s not too bad as we’ve given it a really good go…
Big hugs to the fellow tax warriors xxx
Hi TAX army, don’t know what to make of what happened today: I went to my GP because my mouth was so sore I felt I could hardly open it, one week after TAX1. He checked it out and said no infection but insisted on blood tests even though its 13 days till the next pre-chemo ones. I have had 4 of 7 GCSF injections. This evening I had a call from the out of hours doctor because the neutrophils were so low , 0.3. However, I guess this is to be expected at this stage of the cycle? Does anyone have any knowledge of this or know whether they can recover in time without any extra intervention before the actual pre-chemo blood tests? The doctor didn’t want to admit me to hospital because my temperature was normal. I am confused and unclear on whether that level is normal for this stage in the TAX cycle. I think my chemo brain is stopping me from seeing this clearly too!
Hi slowski - i narrowly avoided admission on my first cycle (fec tho) as a new lump appeared on my clear armpit and neutrophils were low (0.9) i was day 10. Junior doctor wanted to admit me for iv antibiotics/phosphate top up and observation. I successfully negotiated to go home as i was otherwise asymptotic (no temp heart rate bp normal etc) promised i would check temp reg and call if rise. It was day 10 afterall.
I had my first tax today and they told me the low immunity can kick in early day 4/5 and carry on for longer hence why the gscf inj are uped from 5 days to 7 and start earlier than the fec. The main advice was temp so i guess if your temp is ok then u may ge ok. 0.3 is quite low tho so wouldn’t want to put you off taking there advice. I think you still have time for it all to come up u still have more injections to come - perhaos call your team in tbe morning maybe they can give a boost one too? Let us know how u get on. Big hugs its such a roller coaster isnt it!
I had to crash out this pm post tax not done that on any of the others! However no whoozy feelibg whoop whoop! Xx
Just scrolled back - bringing smiles to my face re slides/trees/charity rides/dog walking. Love being part of this group. Xx
Slowski would it be worth giving your onc team or BCN a call? They usually have a 24hr number you can call. I remember my onc telling me that neutrophils usually come up within 48hrs of taking the gcsf jabs. I had my second cycle delayed because my neutrophils were 0.1 and they went up to 20 after 3 gcsf jabs. Maybe it’s slower where you are in your cycle (day 7) but I think it’s worth checking with specialist team especially if your mouth is that sore
My low neutrophils were with EC so it may be totally different response with TAX. Still worth a call to onc in morning though I think just to reassure yourself? Hope you feel better overnight.
Egg x
Hi everyone, Beedot here, thanks for asking after me Blue2, I have been reading the forum regularly but fell behind in contributing. I like to read about all your antics, in amongst the serious stuff which I can relate to.
I am glad you are feeling better Mooney and back on the forum.
I am at the back of the group in terms of chemo progress. I have had my 3 FEC and will start T next Monday - and I’m not liking the sound of it! I know Blue 2 you said you were worried about moving to EC but I haven’t found it too bad at all (another reason for keeping quiet really). I think if my oncologist asked if I would rather stay on FEC than move to T, I would be tempted to say yes.
I have had mild touches of most the SEs discussed but really mild and no fatigue. Someone last week asked me why I haven’t been as affected as everyone else she knows and perhaps my dose wasn’t strong enough, I should check it! It sounds like it might catch up with me on T though.
Even so, I agree wholeheartedly with Slowski, Ebim and Nicky that surgery seemed an easier part of the process and Lou on the fact that you get much more fuss and attention at that point, everyone around us seems to get chemo sympathy fatigue at this long drawn out process.
Suze, I am moving on to RT late May/June so will be staying with that group of us (not looking forward to the tattoos…)
I read the Kathleen Thompson book advertised on the BCC site “from both ends of the stethoscope” - the author is a doctor who got BC and has written a guide to demystify treatment options although she didn’t have chemo. It’s a good read, with some interesting information, although as a doctor, she is unfazed by some of the procedures that would have sent me in to a complete meltdown. The funniest bit, that I could relate to, is getting so used to whipping her top off for so many appointments at the hospital that she is scared she might do it inadvertently in public!
Love to everyone, nice to be back. Beedot xxx
Hi All
well that’s what weeks without chemo does for you a neutrophil count of 8.8 but it was 1,10 days ago following my d&v. Slowski I had no gcsf injections, just antibiotics. I am not sure if Tax knocks your wcc on the same way FEC does but they have given us our GCSF injections so i imagine it does.Your mouth sounds awful Slowski. What are using? Is it mucositis do they think? Worth calling unit I agree, you need advice from the experts!
Ah welcome back Beedot.
love and hugs
Mooneyxx
Hi Slowski, I was told that the low points for tax were days 7-10, so you are still within that low period? Its easy to say but with 13 days and some more gscf jabs to go to your next cycle, things could still be Ok? I would ring the chemo line though - it might help put your mind at rest.
Hi Beedot! Nice to hear from you! Fingers crossed I cope with EC like you did! I think I would probably select to stay with tax rather than swap to EC, but that’s only because I know what to expect with tax and after the first cycle, have coped OK with it.
I have another MRI next week before switching to EC. I’m crossing my fingers for a significant change in my lump!
Oh, as well Slowski, for my first tax cycle, I had to have a blood test on day 7 (they called it NADIR?) to check my neutrophils as they said day 7 is the lowest day and after that they start to pick up. Are you day 7/8 now? I haven’t had to have the blood test on my other tax cycles - I think they just do it for the first of each treatment type to see how your body reacts to it.
Love it jackie - such a beaming smile, as you say another session down! Have a good day hope u the coffee continues to stay good!
Rowntrees ice lollies seem to be good for the mouth- just right amount of tang! Xx
Thanks all for your responses re neutrophils and great to see Beedot.
Chemo team want me come into hospital to get antibiotics, currently seeing if they can get me into ambulatory care and avoid A&E wait.
Will let you know what unfolds. This journey keeps on giving doesn’t it, so glad we all look out for each other.
Slowski X
Love the photo Jackie! I can’t work out how to post photos but if ever I do, I will post one.
Welcome back Beedot. I follow the December thread as well to see what’s in store for us and the good news is that a lot of the December ladies are reporting some fuzzy hair growth! Have a good day everyone. R x
January Tax Army - Attention!
As you have by now gathered, troops, the Tax is a difficult piece of kit, but it is a vital weapon in the fight against the real enemy. I was one of the September 2016 Starters and have survived 3 cycles of Tax with Herceptin and Perjeta. If you have a look at the September and October Starters threads this should give you a pretty good idea of what to expect further down the line. The difficult period for me with the Tax cycles, when the SEs were at their worst, was usually Days 4 - 12. If yours follows a similar pattern, the last week of the cycle should be reasonable as the really bad SEs should have gone by then, although the fatigue does tend to stick around.
I see a number of you have reported problems with low neutrophils. Sorry, I can’t help you with that as it wasn’t a problem for me, though it seems to be quite common, particularly if you don’t have GCSF or Neulasta injections to boost your blood counts. If you feel low at any time, always contact the hospital for advice as soon as possible - it is better to be safe than sorry.
Private Jackie has reported hair growing back - this is quite common with Tax, so once it has started it should keep growing, and three or four weeks after chemotherapy it should be growing at a normal rate. Though I should warn you that the rest of your eyebrows and eyelashes will probably disappear during your Tax cycles, even as the hair on your head starts to grow back! My eyebrows and eyelashes continued falling out for a couple of weeks after the end of the last cycle, but have since grown back (I am now around 3 months post-chemotherapy). I saw the first signs of regrowth on my head during my fourth cycle (second Tax), and it has continued growing ever since. I now have complete coverage, although it is greyer than it was before and still a bit thin at the temples.
Private Slowski has reported to sick bay with a sore mouth and throat. I can confirm that this is quite common with Tax, as it affects your mucous membranes, so you may also find you have other gut problems as well which I won’t go into (I had these as well as the sore mouth and throat). If your defences are low this will not help. The other thing you can get is taste changes, where you go off certain foods and drinks. The mouth and throat problems should go away on their own before the last week of the cycle - mine tended to arrive around Day 4 and went away by around Day 11 or 12. The taste changes may stick around and change subtly over the remaining cycles, but should disappear once chemotherapy is finished.
Having a sore mouth puts you at risk of developing worse things like ulcers and oral thrush. If you are suffering from this, I strongly recommend contacting the hospital or your GP as soon as possible. They should be able to give you something to relieve the soreness and minimise the risk of ulcers developing (e.g. Difflam or similar products) and something to clear up ulcers if you have already got them and over the counter products are not helping (e.g. Gelclair).
If they are suitable for you, you may also be prescribed a course of anti-fungal tablets to prevent oral thrush (e.g. Fluconazole - only available on prescription from the hospital or your GP). I was given a course of anti-fungal tablets for every chemotherapy cycle and I never got thrush. If you are prescribed Fluconazole or similar tablets, you take them for a week from Day 8 with Tax (from Day 10 if you are on FEC).
If you can’t get to the hospital or your GP straight away, you can in the meantime get dry mouth spray and Bonjela or similar things from the chemists, which should help. The other thing you can usefully do is keep rinsing your mouth with salt solution, which is gentler than mouthwash. You can make this up yourself at home by heating half a teaspoon of salt in a pint of water.
There’s not much you can do about the taste changes except eat whatever you fancy, and whatever you can manage to swallow if your throat is sore and swollen. I couldn’t easily manage solid foods and had to resort to ‘soft’ foods such as porridge, Weetabix with plenty of milk, yoghourt, pureed soups, fish pie/ shepherds pie/ anything else with mashed potato, and mushy peas.
I hope this helps…at ease!
I doff my cap Old Dawn to the best post ever!! Do you have any advice for the sore joints. I found the pain excruciating ? are there stronger painkillers I can insist on next time? My unit seems reluctant
Thank you Dawn for a stellar post!
I’m still waiting for oncology team to decide if I need to go to hospital or not.
Keep going warriors…