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  • Alyson
    Alyson Member Posts: 3,737
    edited April 2012

    Chrissy sending big big hugs. Look after yourself please.

  • Kate60
    Kate60 Member Posts: 523
    edited April 2012

    Chrissy...... No........ But does this mean I now call you Mrs Clot? and you are quite welcome to call me Mrs Pain in the Neck LOL. Hugs to you. xxxxx

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2012

    Chrissy ((((hugs)))) I hope they get it all sorted out.  I knew something was wrong - you are a BCO addict and a couple of days not here made me fear the worst.  And not getting a text back from you also made me wonder - I do have it now that you've resent it :-)  xoxox

    Hopefully all your tests come back ok today.

    lol @ Kate - you have the best sense of humour

    Lyndal and Sue - I use the time release melatonin - I think it works best.

    Saw my GP yesterday, he too thinks that Arimidex has something to do with the sudden downturn in all my joints - especially my back.  He's asking the onc if something called raloxifene could be an alternative.  I haven't had a chance to google it yet.  Have any of you heard of it?  He's given me some mobic to take to help with the pain - a tablet a day, another one to add to my little handful I take every day now (glucosamine, vit d, fish oil, magnesium, caltrate) and says to go back to my chiro and have him work on my back.

    Was out till very late last night - doing front of house photography for Titanic the Musical.  Will be there again tonight - it opens tomorrow night - the 100 year anniversary of the sinking of the Titanic.  Very powerful musical - beautiful music and singing.

    Am home today - didn't get to bed till very late, and knew I'd need a day's leave, so slept in this morning.

    Hugs to you all

    Trish

    xoxo

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2012

    Trish - you could try Aromasin - equally effective - I've decided to stay on it - feel much more energetic now.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2012

    Hi ya girls!!!   My darling DD just knew I would be champing at the bit to get my puter and so has just bought it in for me...............what a good girls she is!!!!!

    Lol Kate you can call me anything you like as long as you just don't call me stupid................... hahahahahaha!

    Getting really tired of feeding the vampires so hopefully I won't have to after today but twelve sticks in three days is getting a bit much!  My poor left arm is black and blue and matches my leg beautifully! Im also hoping that the bone scan to be done this afternoon will be the last test that the doc requires.  If nothing else, this guy is thorough!!!

    Now to go back and read so I can catch up on what everyone has been up to on something that is a little bigger than a postage stamp......lol.

    Love n hugs all!  Chrissy

  • gerrib
    gerrib Member Posts: 60
    edited April 2012

    Hope you make a quick recovery Chrissy. Do you have to have an IV or just anticoagulants sub cutaneously? I'm just curious - no need to answer until you feel better - but what symptoms did you have?

    I have another query - thinking about Trish's dilemma with her AI. So I will see if you ladies can help. It seems post-menopausal ER+ women can take either Tamox or an AI. - Right?  In the U.S. it seems AIs are the standard for post-meno. Is that because there is no risk of clots with them so they are deemed safer than Tamox? The AIs seem to have so many other associated problems: osteopenia, raised cholesterol to name a few. My BS and MO seemed to confidently recommend Tamox for me ( I am post-meno) and I feel I would prefer the risk profile of Tamox to that of AIs, having had a mother who was incapacitated by osteoporosis. And Tamox is supposed to actually help your bones and heart from what I've read. I'm virtually SE free since starting Tamox about 2 weeks ago. Anyway just thinking out loud.

    Gerri 

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2012

    Chrissy - yay you are connected to the world on a bigger screen again :-)  Hope everything goes well with your bone scan and you don't need to be jabbed again this week xoxo

    Gerri - I think what my gp is thinking is the raloxifene is in the same category as the tamox so will be easier on my bones than the Arimidex or Aromasin.  So will see what onc thinks next month. I want to be able to take something effective that doesn't have a bad effect on my bones.  I'm now taking a Mobic once per day to help with the pain.  Apparently it takes a couple of days for it to work, so looking forward to Sunday lol

    Thinking of you Jenn as you have your next Taxol this afternoon.  I really hope the se's are less than the last few times for you ((((hugs)))))


    Trish

    xoxo

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2012

    Trish - I've had Zometa infusions to protect my bones from the AI's

  • racy
    racy Member Posts: 976
    edited April 2012

    Gerri, a lot of us are on AIs. I actually think they have fewer worrying side effects than Tamox. I would be concerned about stroke as I have a strong family history. Also there is a risk of endometrial cancer. Thirdly there are problematic interactions with antidipressants. Fourthly,from what I have read, the AIs, or at least Femara, are better at keeping recurrence at bay. You can read some of the studies on this site.



    I was pre menopause before chemo. After chemo I had my hormone levels checked. My onc said I was now menopausal and could take an AI. He prescribed Femara but said he could equally have prescribed Arimidex.



    I had some joint pain on movement at first but it cleared after about eight weeks. The only remaining side effect that I have is sweating on face and upper back, mainly in the evening.



    I am happy to be on Femara, all things considered.

  • racy
    racy Member Posts: 976
    edited April 2012

    PS I had a bone density test and my onc said I didn't need Zometa but he will keep it in mind.

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2012

    Racy - my onc lied to get it for me even though my bone density was ok for my age. He was more concerned with the prevention of bc recurrence than helping my bones.

  • Linda1966
    Linda1966 Member Posts: 441
    edited April 2012

    lol Racy Im so jealous,  a al that doesnt cause horrendous pain. Im so very very tired of aching all day and night on the arimidex. Im due to see the onc later this month (she thinks its so I can get the next Biphospenate iv) but the reality is I want to see if I can take a pill holiday. Im so busy at work and cant physically do the hours I need to to stay afloat. A few months off the agony pills would be my idea of heaven on earth at this stage. In a few months the shop will be making plenty of money and I can pay extra staff to do the hours I cant, but for now I WANT OFF THE MERRY GO ROUND. Ive thought very long and hard about this, and if she insists I have to stay on them I will, but I so hope for the time off. As a second resort I might ask if Femara is an option. Dont really want to go onto tamox as Ive had blood clots and dont particularly want them again.

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2012

    Hi girls!

    Lyndal if the Arimidex is giving you such a hard time ask to be changed to Femara.  I was originally on A and the SE's were horendous and I truly looked, moved and felt like a 90 year old.  I was changed to Femara and within a couple of weeks, the SE's disappeared and other than as Racy said a bit of extra sweating mainly at night I also have no other SE's.

    Trish, it sure is nice to be on a bit keyboard and big screen again.........lol........the pone is fine for emergencies but as a continual thing I think not!  I just got word that the scan cam back with nothing new so that is a good thing also.......yay!

    Gerri I'm not on intravenous thinners but one called Clexaine that is injected twice a day into my belly fat (of which there is copious amounts) and tonight I was started on Warfren so for all intents and purposes, at the moment, I am a vulnerable haemapheliac!

    Unfortunately until the levels are correct for the warfren as it is trial and error, I have to have a blood test every day and that is going to be a problem as my left arm/hand has finally refused to give anymore so I'm thinking, that tomorrow I can look forward to them using my feet!!!!   YUK!!!!  and OUCH!!!!

    Hope all you girls are feeling okay.  Jenn goodluck with your Taxol today hope it all went well. Kate, sorry my darling but I've forgotten when you are due for your next one but I know it's soon so goodluck for that.

    Bit tired tonight so I think a pill is in order and head on the pillow.  Will catch you all in the morning!

    Love n hugs.  Chrissy

  • Linda1966
    Linda1966 Member Posts: 441
    edited April 2012

    Chrissy, I was on claxane too. They asked after a while if I wanted to switch to warfarin but I refused as I couldnt afford the time for the blood tests for such a long time. While it is a complete pain in the a$$ to do the daily injections, perhaps ask if you can stay on claxane for a while to give your veins a chance to heal. The only s/e from the claxane is that you will get hard lumps and many many bruises on your belly, but they are simple for you to inject yourself with and far less of a hassle than warfarin. You just change from side to side of your belly and try hard not to use the exact same site twice. Equally while I was black, blue and yellow all over after a few months in the belly, I dont remember it ever hurting or being tender in the area.

    Hope this info helps give you some options Chrissy

  • Kate60
    Kate60 Member Posts: 523
    edited April 2012

    Oh Chrissy, good to have the good old gal back! (only figuratively speaking of course). I'm not having anything at the moment until the Herceptin at the end of the month. I am s**** scared about this. I have tried to inform myself about it, and I know there are risks with anything we take, but I dunno, I just have a bad feeling about it. I know I will need a lot of hand holding for the first one and if that one is OK without any problems then I'll probably fly through the others. It's the first one that is scarying me. Rads start around about that time. They haven't given me an exact date yet but I've been measured up and tattood and am ready to go when they are.

    I hope everyone has a lovely weekend. xxxx

  • Linda1966
    Linda1966 Member Posts: 441
    edited April 2012

    Hugs Kate. Wish I could help with the herceptin but that ones completely out of my experience. Nothing like BCO for the education value though, not to mention the support so Im positive a herceptin thread here will help give you peace of mind.

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited April 2012

    Happy to hear from Chrissy!!!



    Got a new chemo nurse who messed around so much then stuck my port wrong and ended up having to get someone else to come and try again. It took over an hourto access my port!!!!!!! So was thre from 2.30 until 6pm. My chest is going to have a bruise :-(



    Jenn

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2012

    Kate - herceptin is a breeze - trust me

    Jenn - I had one of those once, but she wasn't new. I did get a bruise and went back and complained a few days later and requested my file be marked that I never wanted her again. She was telling me how she goes home upset because she misses so many ports. I did have her once much much later for an herceptin tx and she forgot to turn the drip on - total incompetence. Don't put up with that crap - you deserve better.

  • Jennt28
    Jennt28 Member Posts: 1,095
    edited April 2012

    Now that I've been through the shower and washed the blood off (really!) I can see the mark where she went in - it's off to the side of the port and I'm lucky she didn't puncture the port tubing!!!



    She's not going near me unsupervised again - she obviously needs more training. Oh, and she was newish to the unit here but used to work at your centre Trish!



    Jenn

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2012

    I used to call that nurse 'the evil one' :) You don't tell patients you miss all the time.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2012

    Hi Girls

    Chrissy - good to hear nothing new on your scan. Bummer about your veins though, maybe it's time you did start to think about a port.  Although I'm not sure how much it would help you.  Mine was only used for chemo and Herceptin.  They wouldn't take blood from it, wouldn't use it for any radioactive tracers etc.  I hope they don't have to use your foot that sounds ugly xoxoxo

    Jenn - I was really lucky I guess, I never had a nurse who did anything wrong, my port was always accessed properly.  I had one time when one of them thought she didn't have it properly as there was no blood coming back when it was accessed. Apparently that can happen from time to time, and for some reason my port did that for about 3 treatments, then was fine for the rest.  If she came from my centre - she can't have been there too long!  Maybe she was kicked out for incompetence and had to move.  Honestly - I had all the nurses at the centre over the 14 months and never had a bad one.  I hope you have your normal wonderful breakfast this morning and enjoy it xoxo

    Kate - as Sue says - Herceptin is a breeze.  It was the one I wasn't worried about at all.  On treatment day I'd go to work, then drive myself into the hospital have the infusion and then go back to work.  It was a piece of cake.  Looking back it did start to make me tired towards the end, and my body was defenitely stiffer towards the end, but on the whole no problem.  I would quite cheerfully do it for the rest of my life if I had to. It'd be a pain in the butt time wise, but otherwise ok.

    I don't have a uteris, so the tamox type drugs wouldn't be a problem as far as endometrial cancer goes.  I had a bone density test done only 12 months ago and was told I have the bones of a 17 year old.  But obviously Arimidex is messing with them big time.  I'm not sure another AI would be different - or whether the Tamox type drugs would be better.  I hear you Sue about the Aromasin being better - and Chrissy with the Femara.  I guess I'll go through all the pros and cons with the onc next month to work out what to do. 

    Trish

    xoxo

  • Linda1966
    Linda1966 Member Posts: 441
    edited April 2012

    You always have to keep an eye on the nurses though. I cant remember the name of the chemo, but that red ikky stuff that comes in a long tube that needs to be slowly injected straight to the vein, picc or port? I had a patient next door who's nurse was trying to somehow hook it up to an iv. Thankfully the husband knew enough to tell her thats not how it is used and for her to get a more experienced nurse to come and replace her. That was when I was there for my first round of chemo lol

    On my second round, another nurse told me how she could never find a vein, then proceeded to stick the needle in my arm, and was ready to go. I told her to go away and send an experienced nurse cause there was no way in heck that needle was actually in the vein. She was ready to inject that red stuff in and thats the stuff that kills surrounding tissue and muscle if my memory is seving me correctly.

    It was the third round where another nurse tried 3 times to find a vein, had them send the registrar over to actually get it and then my oncologist decided my veins had been so messed up that they sent me home without chemo. One of the few times I cried during that time. Was so het up to do the chemo and the downer from not being able to proceed was just awful.

    After that I got the picc for another try at round 3 which caused the blood clots argggh) and then the port for the rest of the rounds. lol the iv for the pic op had to go in my foot. Man that hurt. Also a stream of nurses refused to do it so they got the head nurse/sister over to do it and they all stood around watching.

    Ahh happy days. Sadly the oncology ward is a good one, its just that nurses are human too and make mistakes. Guess thats why they have to go thru our details so many times before actually starting the procedures so that they dont give someone the wrong chemo.

  • Alyson
    Alyson Member Posts: 3,737
    edited April 2012

    Hi has everyone had a weekend off?

    Chrissy how are you? When are they going to let you go?

    Interested in the comments about accessing ports and veins. Only had one bad port access and that was through inexperience but the worst have been when trying to get veins in my arms. Even now I have real trouble and have hematoma on my forearm from a blood draw on Thursday (have onc appt tomorrow).They don't like being told that it will be difficult and where there is a vein.I try to joke but most insist on pocking around ouch!!!  And the worst was a specilaist radiologist - this was before the port.

    Trisha I am on Femara -its OK. I am never sure if my problems are SEs or worsening arthritis but suspect the dengeration in my spine is from the AI. Hope you can get some sort of relief.

    It is a beautiful day here so had better get moving.

    Big hugs to all.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2012

    Morning everyone

    I did have a weekend off lol Did all the normal things, some housework and a little bit of gardening. 

    GP has put me on Mobic, and my back already feels much better. It's still tender and I have to be a little careful as I move, but the Mobic is starting to kick in.  I'll see what the Onc says next month, I don't think I can be on Mobic for 4 years straight!  It's an anitinflamatory so probably not good for you long term.

    Interstingly though, I'm having sleep issues again.  I've gone a couple of weeks with good nights, and then suddenly can't sleep for two nights in a row - and that's with 15mg of melatonin.

    Otherwise - all is well.
    Hope everyone else is ok too?
    Trish

    xoxo

  • Kate60
    Kate60 Member Posts: 523
    edited April 2012

    Hiya Trish. I went and got my sleep script filled tonight and guess what it is?? Melatonin! Cost a bomb - $48 for 21 tablets, just 2mg. I've taken one so we'll see how it goes. I 'think' it's something I have to take everynight for it to build up effectivenss, not just one if I need a good nights sleep, but I'm not sure. Dr didn't explain it to me, he just said it was new on the market, non addictive and does'nt' give any wake up hangover.

    I've not been sleeping well. I am having dreadful hot and colds, and seem to spend so much time throwing off the layers, then putting them back on once I've cooled down. Reminds me of the damn hot flashes I used to have when I went through menapause. Grrrr. Oh well here's to us both sleeping well tonight.

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661
    edited April 2012

    Hi Kate, yes getting a script for Melatonin is very expensive - although I think I only paid around $35 for 21 tablets and they were 3mg.  You don't have to build up effectiveness though.  They should work straight away.  I found the 3mg wasn't enough.  I get mine through Biovea (Sue put a link on here some pages back, but it's an Australian site).  I get 120 5mg tablets and they get through ok.  It's illegal to import melatonin - but ok for small amounts for personal use.  Some ladies have had theirs confiscated by customs, but that hasn't happened to me yet.

    I have to take 3 tablets to get a good night's sleep and sometimes that doesn't help either.

    It's all a matter of trial and error.

    I wonder why you are getting hot and cold flushes now?  You haven't started your AI's yet have you?  Mind you I don't get bad flushes on Arimidex, not like when I was going through menopause, but the cold flushes are new and only since Arimidex.

    How did you sleep last night? When do you start your rads?

    Jenn - how are you going after your treatment?

    Chrissy - hope you are going ok?  Are you sprung yet or still in the hospital?

    Kylie - how was your visit up north?

    Hope everyone else is going ok.

    Trish

    xoxo

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2012

    Kate - you'll have to get some from Biovea - $20 for 120 tabs

  • Kate60
    Kate60 Member Posts: 523
    edited April 2012

    Gosh Susie - that is far more economical. I will do that. I nearly died when I had to pay for them last night. On one wage, money is very tight at the moment.

    I slept a little bit better I must say, but still not a really good nights sleep. I too don't understand why I am having these hot flashes again. I guess maybe it's just the remnants of the chemo. Hey, I think my real hair is making an appearance. If I look really closely I can see some dark hairs starting to sprout!!!!

  • chrissyb
    chrissyb Member Posts: 11,438
    edited April 2012

    Hi girls!!!   Thanks so much for all the good wishes they are much appreciated!  I'm still in hospital with the promise of a possible release tomorrow.........but I also had a possible release for today.......lol.......we are just trying to get the Warfarin levels right and then I can be as free as a bird........lol.  DH is coming down to the city today so I get to see him for the first time in two and a half weeks and I am so looking forward to it!  Can't wait for the big bear hug I know is coming with him!  The knee is healing but of course having this jolly DVT has set me back a little as there were a few days there that I couldn't do the exercises nor the walking so am now having to put up with some extra pain as we loosen it all ap again................oh well, at least I'm still here to winge about the whole deal..........lol.

    Kate, you can safely increase your dosage of Melatonin until you get the level of sleep you require.  At 20mg, they even say it has a theraputic value for BC prevention but if I took that amount I would sleep non stop!!!  Yay for the appearance of what could be your normal hair!!!!  Keep checking!

    Hope everyone is doing well!

    Love n hugs Chrissy

  • suzieq60
    suzieq60 Member Posts: 1,422
    edited April 2012

    It's around that. Go and look:

    http://www.biovea.com/au/

    Chrissy - sorry to hear you are still in hospital - ((((((((((((HUGS))))))))))))))))

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