Well, that's me off Taxol now. Results of Monday's scan show all liver tumours have grown :'( Going to have a break until the new year and then start doxorubicin on a three weekly cycle. There's a lifetime dose of 6 cycles of dox, so whether it works or not I'll be moving onto something else before too long. Feeling pretty low tonight, but my daughter's coming home from uni, so that'll help.
Hope everyone else is having a better week! Hugs, Tat xx
I'm with stillhere, Marirose, in everything she says. Please don't worry and paint on a 'I'm fine' face! It's absolutely not fine for you to feel this way!! It's perfectly reasonable for you to call for an appt with your onc to discuss this new treatment, especially in view of the pain you're feeling and the rather rushed way the switch was made. Big hugs xxx
Marirose, so sorry that you are feeling down...you have made so many of us feel better with your wise and comforting words, now it's your turn! I hope that you have a sunny day today, that you manage to get more sleep-feeling exhausted is no fun, and that if you are feeling anxious, you ask for a follow-up sooner than January.
I have had faslodex treatment, I'm not sure if your pain is from your secondaries or the injections? My tips were to lie on your side so you are relaxed, ask the nurse to warm up the phials a bit, it's quite viscous apparently, and inject very SLOWLY. I also used to massage my derrière straight after although I later read that it made the liquid disperse too quickly! Who knows?
Sending you (((((hugs)))))
The sore bum I can tolerate but it's the pains in my right leg groin and lower back I have taken Oramorph which has helped ( I have had it in the cupboard a few months but never needed it) but the pains stop me from moving around properly and I hate that my bones are hurting too so it worries me. The more I think about the change over to this new drug without proper consultation makes me feel I have been thrown on the scrap heap. I have not slept for the last 4 nights so I know this will get me down too. But I will put a brave face on it and as I always say "I'm fine"
love and ((((hugs)))) xxx
Hello Carabel and Tat
I do hope you are both feeling better.
Fulvestrant is often used with other drugs in trials. I have had my first of 3 fortnightly injections before I have it once a month. So the next time I have a blood result and see the onc will be January 3rd + 4th I am feeling so low about it while on taxol I felt better than I have done for such a long time. Now I am getting quite anxious being left for such a long time without blood tests. I am in pain which I didn't have for a long time.
I wish you both success with Taxol and shall be watching how you are both doing.
Love and ((((hugs)))) xxx
Gosh, what a long inpatient stint, Carabel. So sorry you had to spend so much time in hospital, but hope you are breathing easy now and quickly get your strength back now you are back in your own home. I'll be thinking of you on Thursday xx
Saw your post about the results of your scan, Marirose. It's so strange how paclitaxel can work on your lung mets but not on the liver! Blasted disease 😞 I really hope stopping Taxol allows your ulcerated skin met to improve and you hang on to the rest of your hair. I don't know anything about Fulvestrant, but I hope it works and has minimal side effects. Your BCNs sound lovely, that level of thoughtfulness and care makes such a difference when you receive mixed or bad news, eh?
I have a scan at the end of this month and will find out whether Taxol is working for me. I'm not a big worrier, but I'm already quite anxious about this - probably because it'll be the first scans since my 2ndary dx and starting chemo. I had T6 (although it was the first of cycle 3, so technically number 7) on Tuesday. My onc reduced the dose to see if my white blood cell count stays up..... watch this space!
Carabel, we hope you are home and feeling much, much better.
Take care everyone xx
I have been taken off Taxol due to my ulcerated skin mets the chemo would make it difficult for it to heal because of the hb. So after 7 cycles and still have hair on my head although it is getting thinner and I think the hair is dead and when the new hair pushes through it will fetch what is left out. Shame because everyone has remarked how nice my hair has looked colour and straight so now I shall have to put up with grey I have never seen it grey all over.
My new treatment is Fulvestrant (Faslodex) its an Hormone treatment which involves needles in both buttocks every 2weeks for 3 doses then every month.
I do hope you are much better Carabel and that you are at home recovering and your breathing is back to normal.
Also you Tat I hope your bloods are back to normal well an acceptable level so that you can continue with the Taxol.
All the best with love and ((((hugs)))) xxx
Hi Carabel and Tat
So sorry to hear you are still in hospital Carabel lets hope they get you sorted out soon.I know it must be annoying to miss a cycle especially when it was doing it's job. To be in for a week is bad enough but to go on to another week is awful. Sending you loads of ((((((hugs)))))))
Tat sorry to hear your bloods are down I know how you feel when you have to miss chemo I had it on my last one.But if thats what it takes I do hope they can get your bloods back up.It was nice to see the grandchildren I miss them alot.The granchildren in France I am not sure if it will be possible to see them at Christmas and they cannot come to England because they cannot leave their dog as it has trouble with her legs and no-one seems to look after her like they can she goes down hill very quickly when they are not there.
The hair is still covering my head it's getting thin and is coming out more now so this next chemo will hurry it along I think.Hoping CT scan results will be ok on Wednesday.
Love and ((((hugs)))) xxx
I do hope they have chucked everything possible at any infection, Carabel, and you are out of hospital now and breathing more easily. Wherever you are, I'm sending hugs xx
Lovely that you saw your family, Marierose, and especially your grandchildren. Nothing like a cuddle with little people to make me smile 🙂
They ran my bloods immediately today and wbc is down to 0.63, so no chemo tomorrow. We're seeing my onc on Friday, so have lots of questions...who'd have ever thought we wouldn't want to miss a chemo session!! Just another weird thing about living with cancer, eh?
Carabel sorry you have found yourself in hospital this week lets hope they let you home tomorrow. Will you have to inject to get your blood clots sorted. It must be scary when your breathing becomes bad I do hope they have been able to help you with this. Sending you loads of ((((((((((hugs))))))))))))
Tat I do hope your wbc has gone up now and you will be able to have your chemo. I know what you mean about the waiting in the hospital it seems as though we spend most of our time sitting around waiting for this and then waiting for that. Glad you had time with your family during this half term I was lucky to have my Wetherby family visit it was lovely to see the grandchildren.
Love and (((((hugs))))) xxx
I hope you are now on the mend at home, Carabel, and the blood clots are gone. Have the medics able to say why the clots developed? If your tumours have reduced in size according to the CT, it's rotten luck to be in hospital with blood clots 😞
Marierose, glad you are finding Taxol do-able and your wbc is holding up. You'll have had your CT by now so I hope you got through it OK and the results are swift and good. Your hair is holding up well, I just have a fine down now! I don't mind wearing headscarves (the wig's too hot and itchy!) and will probably go completely bald once all the hair is gone. After worrying about it I've discovered I rather like the shape of my head!
I didn't have chemo last Tuesday..... On the Monday my wbc was only 1.5. After a 4 hour wait the next day, I was called into the ward and the nurse took bloods again which came back with a wbc of 1.3, too low for chemo. It was a bit frustrating as I'd wasted 4 hours waiting (lots and lots of waiting at my hospital!) only to be sent home again! I can check my bloods via the hospital's patient health portal, so if they are low again I will be proactive in asking if they need to be checked again to, hopefully, avoid a long wait for no reason. I'm learning!
Had a lovely half term with my family visiting for a few days 🙂 Hope everyone else's half term has been good and you are ready for the clocks to go back 😞
Keep on keeping on, Taxol Team! Tat xx
Tat I do hope you are feeling so much better than last time you posted has the slower infusion helped you? I do hope so life can be so miserable with this disease at times. Do let us know how you are.
Carabel did you have the Hickman line fitted. If you did I hope it went ok it will be so much better for you. Luckly my viens are very easy although last week they weren't but I made sure I had plenty of fluid this time.
I had a phone call yesterday from the CT Scan secretary who offered me a cancelation for 4 pm Saturday How lucky was that I was shocked because I didn't expect that for another 2 weeks.
My cycle 6 was today my bloods were fine again my wbc was 5.2. My hair is getting thinner but still plenty left to get away with it as long as I don't mess with it.
Love and (((hugs))) to you all xxx
I was writing at the same time as you. Sorry about the picc line not working lets hope the hickman works good luck tomorrow will be thinking about you.
Hello to all
I have had cycle 5 today I saw onc first for medical review he was pleased with blood results he said the blood for liver showed a reduction but not to build hope up too much because the scan would show it better which I shall be having after cycle 6 or 7. I cannot understand why my chemo nurse today did not put my wbc results down in my record book 4 was 5.2 it seems to be lowering each time what is the the lowest it can go.
As for se I have had a free cycle week with 4 no 'D' thank goodness I have felt great although it shows in the afternoon when I get Dinner ready I get very ratty with hubby when he tries to help he gets in my way, also I am tired ready for a rest because I try to do too much through feeling better. Oh se the hair how could I miss that the head is still full of hair but getting thinner I lost quite a lot during washing and I went to a wig shop yesterday and bought one. But not ready for it yet but all the messing with so many wigs she got me to try there was hair dropping on me but it has now settled down again with little dropping today. I wanted a cap or turban but forgot to ask.
Well lets hope cycle 5 goes as good as 4.
Love and (((hug))) to all xxx
So, taxol number 5 has produced reaction number 4.... bit bored with this now! Been here 6 hours already, 2+ in the waiting room, then lots of delays with pre meds and an ECG after the reaction. Now infusing at a slower rate. Yawn! Other than problems during chemo, I've been ok. Felt unwell and sleepy Thursday, but fine since then. Wbc 3.2 from yesterday's bloods, so slowly sliding...
Hope everyone else is having minimal se's.
hugs, tat xx
A 1.5 hour wait for drugs to be dispensed is fairly standard at my hospital, Marirose! Glad you are managing alright on Taxol, long may it continue!
I had oral steroids to take before T4 this week and the infusion went more smoothly, but I feel rubbish today, temp raised, but not to a worrying level. We had an appt with our solicitor to sign our new wills this morning and then my hairdresser came in the afternoon to get rid of the remains of my hair.... all in all, quite a hard day 😞
I'm so pleased you are back at work and are being looked after, Carabel. Keeping as much of our non-cancer lives as we can is just so important, and work must be a huge part of that.
Thanks for all the good wishes, Delly. Hope you are keeping your chin up while you wade your way through the medical minefield, hun.
Love to everyone I haven't mentioned - head full of cotton wool today! Tat xxx
Cycle 4 over with today all went well although it took longer the chemo prescription machine (don't know what it is called) was broken and they had to get another hospital to dispense the drugs 1 1/2 hr later and then my lovely new Dr (removed due to Ts and Cs) was slow authorising the drug (apparently he is letting paperwork pile up)
Bloods are good so lets see if the hair stays on my head although there were more loose hairs in the sink.
I do hope you are all doing well Love and ((((hugs)))) xxx
No, Carabel. I'm not on Taxol, Nothing.But I was having tests done for possible 2ndaries in my liver. Hence my interest to come have a look at you all here. Mucho luvo
Carabel well done going back to work is good if you are up to it. Too much time is spent on dealing with the 'C' it is good to take your mind of it by going back to work. I miss my work friends and love it when I meet up with them again a week last Saturday I went to a evening wedding reception. I loved it and found some strength to join them on the dance floor they were amazed how well I joined in. Personally I think the steriods are helping I have felt great but I have had the odd bad day like Friday when the big 'D' hit me spent the day falling asleep and running to the loo.
No hair loss yet although I am careful I let my hair dry naturaly and use no electrical equipment on it. I did get a short hair cut before I started Taxol. I have a feeling this week may show a difference in my hair style as I have noticed some body hair dropping out. Tomorrow I have a lady coming to show me some wigs Wednesday will be cycle no 4.
I only hope my bloods will be ok as they seem to be dropping every week. This chemo is being watched far better than my last two which were tablet chemo's
Love and (((hugs))) to all xxx
Just having a catch up with you.
Marirose - despite the initial confusion as to why you were there for your appointment, that must be very reassuring that your Dr "Matthew" is taking such a careful interest in you because of your MS.
Tat - Glad you had a good girlie w/end?? Great on the "Fringe". What a brill idea and even better that it's a donation service. But what a frustrating experience with your "lacking" dressing pack, awwwww, but so glad your GP and surgeon husband were able to come up trumps for you. Hope the hosp will make the required ammendments for your and other peoples future picc line clean and flushes !
Carabel - hope you've now got your wig and are looking abfab. Brought back a memory to me of one of my patients. I complimented her on her new hairstyle after I'd finished her treatment. "Love your new hairstlyle - you look great, really suits you". "It's a wig" said she. She hadn't mentioned that she was going through chemo. Just went to say and show how much better wigs are these days. Hope you enjoyed your dinner with friends.
Hope the rest of you who've posted on here in the past and I haven't mentioned are all still doing well.
It's so frustrating when you get pushed from pillar to post and delayed again and again, isn't it Marierose? Good to hear your MRI shows no scc. It's my week off, but I have an appt to see my onc tomorrow, so not a week off at all!! I've been brewing a cold this week, so hope my bloods are OK on Monday. Is your white blood cell count dropping, Marierose?
My hair is falling out in handfuls so I expect the next chemo will finish it off. I found a wonderful website that sends human hair fringes and partial hair pieces free of charge (they request a donation towards postage and packaging, but the order goes through before that page comes up). I requested a fringe and it arrived 2 days later with a lovely handwritten note. Just need to get my hairdresser to trim it, but think it will be a great alternative under a hat or to make a headscarf less obviously a 'cancer patient' one! The website is http://heathershair.co.uk/
We also had a bit of a 'mare on Monday when my OH tried to clean and flush my picc. He'd been shown how to do it and we brought home a huge pack of supplies, but the kit we have is different from what they use in the hospital!! The sterile gloves are way too small for his hands and there was only one chlorhexidine wipe in the old style stat lock pack. I was tired from my (lovely) weekend with school friends and burst into tears of frustration at the prospect of having to go to the hospital 😞 My OH called my closest friend (she is a GP and lives just up the road), so she and her eye surgeon husband popped in and with her medical bag managed to fill the gaps and complete the process for me. What a farce!
Hope everyone else is feeling well on taxol.
Hugs, Tat xx
Just an update I had my 3rd cycle yesterday and I feel great but my bloods are all dropping since starting wish I could understand what they all mean.
The Dr wanted me to see him before I started treatment so I had to go up to the breast unit and when I said who and why I was there they said they knew nothing about it I said that the chemo sister had rung them up and they said she hadn't. Anyway after 1 1/2 hours they decided to let me see Mathew who said he had sent for me as he needed to see me.
Well the reason was to do with my neurological issues because I have MS he wanted to ask me to inform them of any different neurological pains than my normal pains because it is one of the side effects. He wants me to ring up and ask for an appointment if I get any. So he is on the ball with it all. He said my MRI scan was clear from spine compression
When I went down to the chemo unit I mentioned why it had taken so long and the sister was really mad and was going to ring to complain to the people concerned has she had had this happen before.
Well I wash my hair tomorrow Carabel lets see how it goes.
Love and (((((hugs)))) xxx
Hello to everyone
Carabel welcome I am new here too you are one cycle in front of me my 2nd was Wednesday. I must say I am feeling quite good I think the steriods have something to do with that even my MS seems better. When does the hair drop out I am getting ready for it.
Tat enjoy your weekend it must be nice to catch up with old friends I am sure what ever the weather you will all make the most of it.
Love to you all and (((hugs))) xxx
Hello ladies, just having a catch up with you all as an education to one who's not ever had to have chemo and out of interest as to how you're coping. You really are an amazingly strong lot.
Tat, dear friend - have a great girly w/end. I've no doubt that, besides films, there'll be plenty of vino flowing! Am I right?? Where you all off to?
Lotsa love to you all
Marierose, good to hear you are managing on taxol and let's hope your MS related mobility issues aren't exacerbated by it. Before starting taxol I read loads of scary stuff, but I've only had to make minor adjustments to my daily routine so far to accommodate the side effects.
Welcome to this thread Carabel 🙂 I replied to you on your thread, but have now realised you had taxol no. 3 today. I hope it was OK and the side effects are minimal.
I'm off tomorrow for a weekend away with 5 school friends (we've known each other nearly 40 years now!) and two labradors. The weather forecast for Saturday is pretty dire, so the dogs might be short changed on the walking front while us girls get stuck in to a movie marathon 😉
Hello ladies I have just returned from my second cycle
Thankyou Mollymop for giving me confidence in this drug you truly are an inspiration to Taxol I hope I can do as well as you.
Thankyou Tat for your welcome and kind words. I did have a bad couple of days where I found my mobility was really bad and I could not walk properly. I do have MS so that plays up too.(I often think the two of them fight to see who can give me most grieve) but at the weekend I found my movements getting better and since then I have felt quite well I do hope this is a good sign.
Love and (((hugs))) to all xxx
That's a long time on taxol, Mollymop! So pleased it's working for you and you have been able to remain active. One of my biggest concerns re side effects, like PN and tiredness, was whether I would still be able to walk my energetic labrador and go to the gym! After taxol number 2 on Tuesday, I am amazed how well I feel. I had an allergic reaction to the taxol following a reduced dose of dexamethasone on Tuesday, so they whacked more steroids into me and slowed the infusion and I was fine after 20 minutes! I know I am starting from a relatively fit and healthy place (apart from the metastatic angiosarcoma, of course!) which must help with tolerating se's.
Everything crossed that the taxol works for you, Marirose. It must be so daunting changing to a different treatment, especially an IV one when you've been on oral chemo for so long. I've followed your posts on the 'skinny' thread since joining the forum last year and feel like you are an old friend 🙂 You are always so encouraging to everyone, hopefully we can encourage you through this new treatment.
Hugs to all xxx
Hi lovely ladies
I too just popped in to check on/read how you're all doing and send a big hug.
I am now joing you I had my fist taxol yesterday my first IV chemo I have spent the last 2 1'2 yrs on oral chemo's E/E and cape. I have gone straight onto taxol and hope it will shrink some of the blighters. Last night I could not believe it I had no pain but I had no sleep not through taxol but thinking about what to do with all the beetroots in the garden.
Thank you Mollymop for your experience you have been on it a long time. I am having 12 weekly treatments maybe 18 we shall have to see what good it does for me.
Tat glad you had a nice holiday in Corfu you must have plenty of energy to get your washing and ironing done in one day. When I returned from France I tried doing it all in one day but took a bad fall through over doing it. Today I look as though the sun has caught me in the face but its not the sun at least its got rid of my pale face.
well love and (((hugs))) to you all xxx