Hi Juju I know how you feel wanting it all done asap… me too, it seems such a long haul doesn’t it… I have a count down going on in my diary and tick a day off at a time. It’s funny how brave you get being bald isn’t it.
Cdc, wasn’t sure which forum to reply on but thought I wouldn’t scare the July starters with thoughts about T chemo just yet. I made error in reading a thread regarding T and seems a very different kettle of fish. Main side effects seem to be tummy troubles mostly being diarrhoea, nasty bone aches, exhaustion and those numb fingers and toes oh and this one affects the nails too which can come off. But what sounded worse was the "sludge mouth " which they all talked about with furry tongue and everythjng tastes foul.You seem to get a lot more steroids too so a bigger come down! I’m trying to tell myself that we all react differently but it’s z bit scary. On the plus side a lot if ladies had hair starting to grow back once in T altho eye lashes went. I guess we just take a day at a time and focus on the fact we are reaching the end? I did talk to a lady at chemo unit finishing T who said she found it easier than fec so you never know…
Like the other (EC, FEC) etc the side affects aren’t guaranteed. A lady I see at chemo every time has now done 7/12 of her Taxol without a single side effect. She doesn’t even bother take take her antisickness neds now because she doesn’t need them.
I’ve decided that once I finish the EC tomorrow and change to T next week I’m going to be her!
I’ve beem dreading T but a family friend said she found it the easiest part of her chemo! Just seems to be no telling how each person will react. Trying to stay positive. When I think of my next cycle of AC in a couple of weeks the thing I’m dreading most is the canulation! I’m becoming phobic! Had one put in for the latest MRI and even though it went into the crook of my arm easily it was painful, I really do want to avoid a PICC line if I can help it but will just have to wait and see. I really didn’t expect that to be the part I’d dread most especially with the vomiting I experienced last time but that’s the only thing playing on my mind at the moment. I’m also going to ask if I can have no steroids which my onc has said is a possibility. It makes the sickness worse but I felt better more quickly when I had 1 day if steroids and only had one day of being down. Not suicidak like last time. . Interestingly I was describing the side effects of my first treatment with the Senior Birse at Breast Cancer Haven Centre on Wednesday and without prompting she said that’s the steroids. She says it’s quite a rare symptom so I’m unlucky but she has met people who have experienced similar psychological problems and even a few who became psychotic!! So glad my oncologist recognised what was going on.
Good morning Clare
I’m so glad I had a PICC. Yes it is a bother having to have it dressed and flushed once a week, but every time I need blood drawn or chemo I say a little thank you. I think I would be a complete wuss about needles. Do you mind me asking why you don’t want one?
All the best
Jacq x
I get about not wanting a picc line because I am just the same. There’s more risk of clots and infections with one. I can only sleep on the side I’d have to have it and have enough trouble sleeping without something else to disturb it. I’d have to wear a cover and I really can’t bear any sort of restrictive clothing. I don’t even do clothes with cuffs or tight sleeves. That’s before you get to having to have it flushed once a week. I spend enough time having to turn up to the hospital for 5/10 minute waste of time appointments that are never coordinated to be on the same days without adding another one into the mix. Hospitals don’t seem to have any consideration for the fact the some people also need to work whilst having treatment and can’t drop everything and attend any time.
I haven’t been offered a PICC, I did ask and they said some do and some don’t but no mention of whether I would need one. So far I’ve been ok with the canula, needles and stuff don’t worry me too much, but it did bruise quite a lot this time. I guess I’d have to have one if I needed it but I get where you come from when you say its another thing to deal with, seems the stuff we have to deal with adds up month on month. I"ve had really watery eyes the last day or so and today they feel like i have sand in them and were a bit crusty when I woke up. I have been round to our pharmcy and asked the pharmicist for his advise. He told me to take antihistime and gave me some eye drops to help the dryness as it could be hay fever??? I’ve never had hayfever but did wonder if it was chemo based or just conjunctivitis? Anyone else had this?
@sally, I know exactly what you mean. I have a 50 mile round trip to hospital and regularly have appointments spread over a week. Once I was there every day for one thing or another. I did ask why appointments cant be co ordinated and got told that it is just not a priority They definitely work to their convenience not ours. @kip, I was offered a PICC as my veins are not easily visible and they only had a choice of two on my good side, they said if there were any problems with a vein I would need a PICC anyway. I hope your eye clears up soon, mine are more watery than usual, you msy have a touch of conjunctivitis if you are wiping them more often than usual, doesn’t sound like hsyfever at all!
All the best
Jacq x
@JacqB Now in the chair awaiting delivery of drugs for cycle 2, and wanted to get back to you regarding dose after hospitalization for febrile neutropenia in cycle 1 (day 8).
They have lowered my dose – to about 80% of cycle 1 – though I said I’d be happy going full dose again with more filgrastim injections. So at leastin my case, the doctors felt it was better to lower the dose this time
Home after cycle 4 and EC finished. Move on to taxol for 12 weeks in two weeks. My bloods were a bit all over the place. Hb down due to anticoagulant injections , wbc 4 times normal at 28 but started filgristim on day 5 not day three so down to that. Still ok to go ahead.
Kip last year when I’d had a desk fan on all the time due to being hot one of my eyes wouldn’t stop watering. Popped into chemist and spoke to pharmacist who said it was dry eye. Gave me (well sold me) some golden eye cream for the eye, sorated in 2 days. Might yours be similar?
@reddi
Hope cycle 2 is going well today. I’m hoping for a reduced dose next week which is cycle four for me. I was fine after cycle 2 which was reduced to 80%, but they increased the dose for cycle 3 and even with filgrastim injections it happened again. I’ve found the side effects of the antibiotics to be as bad as the chemo and I really hope to avoid neutropenia for the third time. At least I have a break from chemo soon as I’m on the ROSCO trial and will be having surgery in September. All best wishes.
Jacq x
My Picc line is flushed by the district nurse each week. I don’t need to go to hospital for it. They do the Picc lines first because they know we will want to go out. Xx
Kip My eyes are sore too and I’m using drops I got before chemo as I heard it was a possible SE. Also seem to have nasal drip!!
Hi Jaqu and ktk good to hear your positive experiences. I have been considering a PICC line. However, my onc has repeatedly said she wants me to persevere with Canulas and not PICC because of the infection risk. Ive been told I’d need to go in to the hospital to get it flushed each week and after having to go in every week (sometimes 2 or 3 times) with my PICO dressings I want to avoid the hospital as much as possible! Also after weeks of problems showering and bathing trying to avoid getting dressings wet I’m just so delighted I can shower and bathe without restriction now. My veins are reasonable after they’ve been in warm water for 10 minutes before canulation but then seem to narrow possibly as I’m getting stressed before the needle actually goes in… I’m wondering if trying to do some sort of relaxation/visualisation would stop me tensing up and make insertion easier. Will see how round 3 goes.
Sally great you’ve finished your EC. Hope the T part goes well with minimal SEs.
Reddi hope chemo has gone ok today and the reduced doseage means fewer problems.
Hi Juju mine are at 10 so will miss you again. My eyes do feel a bit better today but will still mention them at unit today and let you all know. It could be the hot weather? Also woke up this morning with my period!, i haven’t had one since before MX so was hoping chemo would stop them for a while… but no… great grrrrr.
Hi Clare. I think after what you have been through so far not having a Picc is the right thing for you.
Sally I live in a rural area which is probably why the lovely district nurses come out. I would be not so keen on having to go to hospital each week for flushing!
I have just had a few fabulous days away with my son. We went to the West Midlands Safari Park and fed the giraffes then to Worcester to see the giraffe art installation around the city. I have never been to Worcester before. It is a beautiful city. Well worth a visit, and finding the giraffes was great fun. Today we are all going walking with alpacas!!! Xxx
Reddi thanks for info 're periods. Anything that happens that I think shouldn’t makes me panic but j guess it must be normal… at least my body is trying to be normal whilst being systematically poisoned.
Ktk your day sounds fabulous enjoy walking with the alpacas what fun!
I spent yesterday shopping with my daughter which was lovely although when trying in clothes I kept finding my wig kept coming off inside the tops… would have been a funny moment had we been in a communal changing room… could have shocked some one!,
I still had that horrible feeling of everyone else going about their day whilst I had the BC gremlins in my head… still feel slight jealousy of everyone else… think my hormones are all over the place bdcausebof period as the leaky eyes are threatening too. Oh well must focus on being half way almost.
