Slowly coming round blue. I’ve found it brutal to be honest. All 5 things- steroids, dox, herceptin and perjeta & jab have the same SE aching bones and joints and fluid retention. Giving it all at once has been harsh but I’m coming out the other end x
Love to all xx
Hi Scotty, I just have the steroids, Tax and gscf injections and also found the SE brutal the first time. I got naproxen for the pain and omeprazole for the indigestion prescribed for my second round and although it’s still an unpleasant 5 days, it’s nowhere near as bad. Rest too, that helps me manage. I think because the SE are delayed, there’s a tendency to carry on as normal, but I found bed to be the best place!
I’ve managed 4 biscuits already Egg! I reckon there might be one each left for the kids by 3.30!!!
Blue I’m not doing too bad. I’m day 3 of tax1. Had a bit of a rough night with tummy pains and loose bowels not sure if this is side effects or a dodgy Chinese! ?
Have been to yoga bug just lead on the mat for most of it!
Feeling a bit tired and achy so will see what tomorrow brings!
WTP, good luck to you today too - we are Tax 1 buddies today. Thinking of all the other ladies going through their Tax1s and SE this fortnight and those switching regimes to EC or FEC.
Blue, my PICC line is the best thing about all this. I had FEC1 via cannula and it took four goes to get a vein. I now have cording in that arm and it’s so sore and I’ve been referred for physiology to help me straighten my arm. My chemo started before I could get the PICC line in. If your Onc doesn’t recommend it, it’s hard but it’s your body and lots of us on here have them or ports so it’s not unusual. I agree, we have to demand things or suggest things and it’s crazy. We’re not randomly Ggogling, just getting advice and help from women that have been there! Rant over, must chill before chemo later.
Hugs all round everyone!
Suze
xxx
Jackie I love your pictures and mottos that you post. They are great and always just sum it up. Hope 4th T goes ok tomorrow - you must be nearly done?
Suze - what you describe is the same as mine - painful when I try and straighten my arm. I have been doing some stretches so let me know if physio suggests anything else. I’ll definitely ask about port at next appointment and see what they say. Good luck to you and WTP later today. Hope it all goes well and you manage to get some rest tonight and tomorrow especially.
Scotty - hope you are feeling a bit better? Soon I will be doing same as you so you are my forward scout!
Morning egg and everyone
I’m feeling much better now the aches have subsided. Nails feel a bit tingly and tummy is a bit unsettled. It’s brutal but passes xx
Dear Scotty glad to hear it is slowly getting better. I can’t remember how many days into this cycle you are now. Do you have some good painkillers for your aches? And maybe a box set on Netflix???I have started watching Scandal on Amazon prime. It’s awful but I can’t stop… I’m putting it down to chemo brain!
Afternoon all - signed in on the laptop and the views are so different to my phone so not sure where this will post to!
I’ve been keeping up with the thread and again so grateful to be able to tap into everyones experiences, I find it really helpful. My first tax is next Tuesday and am starting to have the same apprehension about the cross over as a few of you have shared. I saw Blue had naproxen re pain relief and others have talken about clarityn, any advice on what is best for the potential joint aches/pains? I already have a painful left hip/thigh so am worried how Tax may excarbate this.
Although physically I have got through this cycle in a similar pattern to previous I have defintely found it harder emotionally. Still not sure if it relates to my friends death or just an increase in the moth eaten/threadbear feeling hitting the inside now too! I did go to the funeral which I am so pleased about - there were about 300 people so it was a challenge as I was day 11 in the cycle and did wonder if i was mad and possibly putting myself at risk. Although increadible sad it was a postive day - she had recorded a video message to be played in which she talked about her journey/diagnosis and her message was just to get out there and be the best person you can and live, love and laugh. So although I have this positivity ringing in my ears there is this inner voice that keeps unbalancing it which is driving me crackers! I am normally glass full person which is why I guess i am struggling with the inner voice. I am going to a Haven Centre next week for my first 1:1 session so hoping they will have some strategies ( or a big hammer to banish the voice!)
It has been a busy couple of weeks - Had to have an HR meeting which thankfully went ok and at present they are continuing to be supportive (i have been off since Dec as had surgery first) and I had my initial radiotherapy appointment. it seems i will have 4 weeks RT, I was expecting just 3 has anyone else had any RT discussions yet? I was wondering if many of are going down that route as I dont really want to go on a new thread as I feel like I know you all! However I appreciate it may not be relevant to everyone…
Re the eyebrows/lashes chat - I still have both and good amounts at present (day 17 3 Fec) so not sure what the tax will do. Hair patchy but no further fall out so far - maybe to 2 cycles of cold cap did help?? Patchy enough to still want to wear scarfs but not enough to brave the wig yet - still sat in the box!
Egg - were you able to get a picc or port in the end? So much easier!
Much love and hugs to you all.
Hi Lighthouse and others. I am on day 9 of Tax 1 and feeling ok. I do think Tax is easier than FEC and not as bad as I was expecting. My brows and lashes are going though. I too want to stay on this thread through radiotherapy which for me will probably start in May as I feel I know you all and get so much support and good advice here. Suze if you get any good exercises for arms do let me know as my chemo arm is stiff and sore and won’t straighten. I too am going to the Haven next week. I’m doing a session on nutrition. If I get any good tips I’ll share them on here. Hope all those teddy warriors getting chemoed today are doing ok. R x
Lighthouse,
2 days after TAX1 here. I will also have RT but don’t know how long, hoping to find out at next appointment as I would really like to know likely start dates and length. Will you have a long journey? I might have a 70 mile round trip depending on where I go !
Hi lighthouse. The words about your friends funeral brought tears to my eyes.
I have my RT appointment next week so I shall be hanging around on the thread for a while yet! Do I don’t know at this point how long my radiotherapy will be.
I too have a painful hip which became more troublesome through fec 3. I’m now on day 4 of tax 1 and I do ache quite a bit. Just been taking paracetamol but I think I’m going to check if I can take anything a bit stronger.
I hope the haven centre gives you some of the help you need with the “voice” - I’m still struggling with mine. Doing mindfulness has helped but the voice is still there and I ever wonder if it won’t be.
I have fuzzy hands too since tax1.
Best wishes all. X
Thanks Esther - sorry didnt mean to make you teary! It was a positive day x I wonder if you maybe right about that inner voice too, ill let you know how it goes at the Haven. Hope the pain/aches get easier as you go through the days.
Ebim - I am sure the treatment will be as effective, but totally get how the calculations can make you wonder! Maybe mooney got to the caravan and is managing a chillaxing time?? (have i remembered that right?)
Slowski - i am lucky my RT will be at same hospital as all my treatment, so only 30 mins away. 70 miles is a huge trip to do daily??! Let us know what your options are. As i intend to drive myself to Rt they warned me i would feel even more tired by weeks 3 and 4 and to consider having people on standby to help with lifts etc
Robin so wonderful to hear that tax was not as bad you had feared - its given me a lift! My Rt is likely to start end of May start of June so do hope its okay to stay on this thread, as i said before i really consider this group to be so helpful.
love to all x
A precautionary tale… was early today for school pick up and so for the first time since starting treatment decided to go into a shop and try on some jumpers. Didn’t bother to go into changing room and thought I would just try some on by the mirror. Imagine my horror as when I whipped off my jumper I felt my wig coming with it… cue awkward contortions with jumper over head as I tried to rearrange it! I think the poor shop assistant thought I was quite mad. Thankfully there was nobody else in the corner where I was so I was able to straighten out my massively squint hairdo without too many funny looks… but it will teach me to wear wig tape in future if I plan anything like that! The things we used to take for granted!
Egg x
Well done to all you tax ladies. You are making it sound like although another challenge to face it is doable and it is very reassuring to hear. Sometimes I think the waiting is the worst bit, I am in my good week and the thought of going from feeling almost normal to back to lieing on the sofa feeling crap is depressing.
I saw my radiologist last week and was a bit like the first chemo appointment. They tell you what they want to do, list all the side affects and worst case scenarios and they ask you if you want to go ahead. Is there a choice??! And you sign the consent form.
I am getting 3 weeks of radiation, including the axillary area (under the armpit). Didn’t really tell me much apart from you feel tired ( what’s new?!) and it feels like sunburn. They gave me a load of stuff to read but haven’t looked at it yet, as still concentrating on getting through chemo.
Haven’t been given a date yet but will be 3/4 weeks after final chemo, so around the end of may.
Blue - I did cold cap for the first chemo but gave up after that, mainly because my hair started falling out and the nurses said that the cold capping wouldn’t stop me losing my hair. As it is I still have hair, although somewhat patchy but it’s stoll there. I don’t know if that is due to the first cold cap or just that I had quite thick hair so have more to lose!!
Keep in there girls…especially Mooney if you are reading this, hope you are okay.
Nicky x
Hello fellow Tax warriors.
Had my 4th of 6 TC today.
Had a very funny sensation when the tax first went in.
Short of breath and tight chest.
It happened last time too, but it passed after a minute or so.
Apparently I went very pale.
Anyway I’m back home and resting.
HELP
I CAN’T STOP EATING.
Possibly in preparation for not eating later?
Oncologist confirmed I’m having radiotherapy after chemo.
His words were " with so many lymph nodes involved (10 out of 15) it would be suicide not to".
The thing about the Spanish is they aren’t like us Brits.
They tell it like it is.
But suicide? ???
Anyway I would like us all to stay on this thread.
We started our treatment together- I’d like us to continue.
Where are you Mooney and Ali?
Please check in - we are worried about you.
Love and strength to all having Tax next week, and to those recovering.
Wow Jackie - they don’t mince their words!! Hmm - surely after all the other treatment, that seems extreme to say! I guess like Nicky says, we have no choice!
Suze - hope Thurs went well for you, my chemo buddy! Mine was surprisingly easy but I’m not getting too comfortable given what others have said re SEs sometimes hitting a few days later, I’m on weekly tax though so a smaller dosage. I was given some anti sickness in IV and steroids then the tax. So far, no sickness at all, no pills nor injections to take at home either. I was awake from 3:30am though so feeling tired today and had a quick afternoon nap.
So far, soooo much better than EC but we’ll see how it goes.
Lighthouse - good luck at the haven centre. I’m so sorry to hear about your friend. It must have been so emotional to see her video at the funeral, what a brave thing to do too.
Egg - your story made me laugh! I had a similar experience in the park - put my daughter on my shoulders and she pullled my hat off my bald head - think it freaked out a few people - including me! 
Jackie - for the first time, I’m actually not eating! Couldn’t stop on EC and gained about 10kgs but have had no appetite at all today… so strange how our bodies react to all these drugs/stress etc. I could def do with losing some weight now so happy for my appetite to hide away a bit longer ?
Hope you all have a great wknd xxx
Well, I’m now coming around from the SE of my final Tax! I must say, like Jackie, the side effects have been less pronounced each cycle, however the fatigue has increased. With each cycle, activity has been harder to recover from - my regular circuit walk normally takes me an hour, but last cycle it took me 1.5 hours and the rest of the day on the sofa to recover! I’m increasingly breathless too - don’t know if that’s low red blood cells, chemo effects or having gained 5kg since Xmas?! I also know what you mean about the energy being sucked from you Jackie - I sometimes feel like I’ve hit a wall with it and can’t move. I tried to explain it to a friend the other day and I couldn’t get across how it’s more that just being tired. I’ve had discomfort in my toenails for a few weeks now, but have noticed today a white ridge in my fingernails for every Tax cycle. They are uncomfortable too. I’m still hoping I escape significant nail issues tho!
I’m moving onto EC in a couple of weeks and am worrying that most of you think Tax is easier! I think Tax is bad enough - I’m not looking forward to worse!! 10kgs weight gain Wtp…? - I’ve gained 5 on tax, so if I gain 10 kg extra on EC…?!! Help!!
Lighthouse, I think we all have that inner voice. I do feel that this journey would be so much easier without it! Hope your sessions help you keep it in check. X
I will be having RT too, but my chemo continues to June (8 cycles), then it’s surgery for me, so RT probably August time. There should be lots of helpful advice on here for me by then!! My RT will take place at ‘the big city’! 60 mile round trip. I actually work in the same big city so had hoped to kill 2 birds with 1 stone and work half days then go for RT then drive home. Will have to see though - alot will pass between now and August so I don’t know if I’ll be able to manage it, but your experiences can only help me I reckon!
Blue, Jackie, WTP - I have also gained on EC. First 2 cycles lost weight but since cycle 3 have put on weight as appetite has come back with a vengeance! In particular gorging on sweet things and never had much of a sweet Tooth before. I was hoping that might reverse the weight gain on T as read lots about it putting off your tastebuds… maybe it’s the steroids though?
Hope you’re all having a good weekend.
Hi Egg, on Tax I’ve found that although food tastes horrid, the empty, churning stomach I get in the first week is so uncomfortable, only biscuits will sort it!! I don’t know if the churning stomach is from the Tax, the gscf or the steroids, but it’s seriously distracting - it wakes me up!! I’d hoped (well not really, but really!) that the EC nausea would halt my ever increasing weight?! Obviously it’s not going to be! X