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  • Linda1966
    Linda1966 Member Posts: 441
    edited April 2012

    Aww Chrissy I was so hoping youd gotten home by now. Hate that things are so bad for you right now. Hopefully the cream will kick in sooner rather than later and you will be much better and home soon.

    The gene thing is interesting. From this thread, youve never said youve had dvt before and lets face it youve had many many treatments that could have brought it on over the years of BC. Something as simple as a bad jab from a nurse can cause them and Im sure youve had your share of those over the years. If I was you, once your recovered, and if you do want do to the other knee I'd point that out to the surgeon.

    Jenn, you'll get thru this and out the other side soon. Im so sorry its getting harder each treatment. With no scientific basis, rightly or wrongly I told myself the sicker, more in pain or weaker I was, the more the chemo was working. Had to do that to face up to each treatment lol. and hey Im still NED after 3 years so who knows. Maybe thinking that will help you too. Regardless tell yourself whatever it takes to get through this tough time and take good care of yourself. 

    Kate, hope you got through the herceptin easily and are having a good night out on the town somewhere.

    Hope everyone else is feeling well and hope you all enjoy your weekends. 

  • Kate60
    Kate60 Member Posts: 523
    edited April 2012

    Oh poor you Chrissy. That just sux!! I bet you are nearly climbing the walls. Still better to be safe than sorry hey. Yep I'm fine after the Herceptin, it was a total non-event really. I was just really worried because I have had bad heart palpitations lately on the chemo and was worried that I might have had an underlying heart condition. Hence my fear not being totally irrantional. I slept for a few hours yesterday during the day and asked the Onc nurse when the chemo fatigue stops. She said it could last for months! Oh and radiation rang me and I have my first on on Monday. I'm on a roll..... xx

  • racy
    racy Member Posts: 976
    edited April 2012

    Kate, I assume you have had your heart issues checked very recently?

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

    Chrissy - that just sucks, I'm feeling for you, and hope the rash clears up soon too, I know how a rash like that can get you down.  And being in hospital on top of it all ... !! You have lots of ((((hugs))) from me girl.xoxoxox

    Jenn - you poor love - I'm sending you lots of ((((hugs)))) too - I was really hoping that the Taxol would be kind to you after FEC.  There's nothing anyone can do to make you feel better, just know we are all thinking about you and willing you through this.  xoxoxo

    Kate!  I told you so lol - so glad your Herceptin was a non event.  You should have had a multi gated heart pool test before you started Herceptin though.  It can cause heart problems with some people and they have to have a base-line test done first, then one every 3 months to keep an eye on your heart.  If you haven't had one - make sure you TELL your onc he seems to have overlooked that test.  Don't muck around, it doesn't affect everyone, but it could be serious if not monitored.

    Lyndall - I'm with you on the Arimidex - you have been on it longer than me, I think?  I'm having problems after 13 months - we seem to have the same jaw/teeth issues as well.  I'm also going for a mammo and u/s in May!
    Kylie - how are you after the Taxotere treatment?  I'm thinking of you too.

    Love to you all

    Trish

    xoxo

  • Kate60
    Kate60 Member Posts: 523
    edited April 2012

    Racy, No tests. I did speak to my Oncologist about it, and he said it was the chemo so nothing was done about it. I guess that might be true. I don't usually get them and had them quite significantly on chemo. They have definately settled down and I haven't had any whatsoever in the past week.

    I was surprised that they don't do some sort of heart scan or blood test prior to the first Herceptin being given, just in case you do have some issue you're not aware of.

    Anyway, must say, I am feeling great today, lots of energy which has been sadly lacking this past week. This house is going to get a hiding. Off I go....

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

    I'm going to be really straight here Kate... Your oncologist is breaking the government TGA rules about the availability to patients for Herceptin already by not giving it with a Taxane. Now he/she is further breaking the regulations by not giving you the, required for safety, heart monitoring tests.



    For your own SAFETY you need to insist on a MUGA or ECG to see what your current LVEF is before you get any more Herceptin. Then you need that same test repeated every 12 weeks while you are taking Herceptin.



    I repeat - this is for your SAFETY. This is not something to let slide.



    Please know that although I am currently very angry that a doctor in the Australian system can be breaking the rules which are there for a very good reason, I am only being this straight because I like you and want you to be around for a long life. With correct safety procedures in place Herceptin is the drug for you and Trish and myself that is the most likely to save us...



    Jenn

  • Kate60
    Kate60 Member Posts: 523
    edited April 2012

    Thanks Jenn. I did think it was odd myself. No-one has given me any literature or spoken to me about possibe heart problems with H. I have gained all my knowledge from these boards, otherwise I would be absolutely none the wiser. I will call Dr's office on Monday and try to tee up those tests before my next one in three weeks time. I too would rather err on the side of prevention.

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

    Kate- please do. So glad you are still talking to me :-)



    Just need to correctvthat it's a MUGA or Echo you need not an ECG (that does not measure LVEF).



    Jenn

  • Linda1966
    Linda1966 Member Posts: 441
    edited April 2012

    lol Racy, wish I knew how to make such short and to the point posts like you do. We both put our 2 cents worth in on the other thread. Said the same thing but man, mine goes on forever haha

  • jezza
    jezza Member Posts: 295
    edited April 2012

    Good advice on Herceptin Jenn. Here is a link to some info re costs etc from the Clinical Oncological Society of Aust. Worth a read.

    http://www.cosa.org.au/media-releases/herceptin.html

    jezza

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

    I had my MUGA scans done at the same hospital I was having treatment at - and as it's a public hospital it didn't cost me a cent.  Kate - if they don't have those facilities where you are - they almost certainly will in Perth.  Make sure you don't get referred to a private imaging place - it will cost a bomb - get referred to a public hospital

    Trish

    xoxo

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

    My MUGA scans (2 so far) have not cost me anything either as my oncologist marks the referral as Medicare charge only.



    Jenn

  • kyliet
    kyliet Member Posts: 587
    edited April 2012

    Finally have the energy to pop on. Hubby gave the neulasta, all went well. So glad to not have the nausea of FEC but feel like crud. Everything aches, tummy grumbles and so exhausted and just to top it off - a period...

    I know people don't know what to say, but "you look so well" when you are hanging on to hubby to get to the door just makes you wonder.

    Chrissy - I hope things improve soon and you can get out.

    Kate - it's so great to get input from the others, without them I would just accept everything the onco says. Now I write it down and hand him the list so he has to answer specifically. I really appreciate everyone's input. Thanks all. x

  • Linda1966
    Linda1966 Member Posts: 441
    edited April 2012

    Kylie, you have my deepest sympathy. Can only suggest lots and lots of those heated beanbag thingies. They do help. Hope you can get some sleep tonight.

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

    Kylie I'm with you too sweetie.  Taxotere really is the pits.  I remember people telling me I looked good when I felt like death - Taxotere gave me two lovely redish rashes on my face - almost where you'd put blusher on - so I looked better than I felt.  Never mind that I couldn't walk faster than a snail and everything ached.

    ((((((hugs)))))) to you sweetie

    Trish

    xoxo

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

    ((((((((HUGS)))))))))) to the girls in treatment - I know it's not nice but it will be over before you know it.

    Kylie - my onc prescribed Somac - fixed up the tummy grumbles really well. Don't be afraid to tell him about your problems - there are drugs to fix almost everything.

    Kate - I'm with Jenn - very strange you are not getting a taxane - have you asked about it. I had echos every 3 months - I think they are better and less invasive than the other thing. 

    ((((((((((SPECIAL HUGS FOR CHRISSY))))))))))))

    Busy day - shopping, washing etc.

    Sue

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

    Hi Girls!  Still hanging in there and if my INR levels are near 2.7 tomorrow, doc says maybe Monday to go home!..................YAY!!!!.............but I'm not holding my breath just yet....................lol...........been there, done that.

    Sure hope you girls in treatment still are muddling through with the thought in mind that you are doing all possible to make sure the beast does not return.  This part of your life will soon be over and the rest of your life can begin.

    Love n hugs all.  Chrissy

  • racy
    racy Member Posts: 976
    edited April 2012

    I started chemopause the day I started chemo. My chemo was TAC. Sorry for those of you not in chemopause and having to endure menstruation as well as chemo :-( .

  • Kate60
    Kate60 Member Posts: 523
    edited April 2012

    Kylie - big huggs to you honey. So sorry that you are feeling so bad. How many more chemo's are you having??

    Chrissy, you poor thing. I think everyone here has there fingers and toes crossed that you get sprung on Monday - boy you don't do anything by halves do you?

    OK, I need some sage advice please. I have been looking on the Medicare website regarding the requirements for being given Herceptin. Jenn, you were right (not that I doubted you at all) as the authority form (signed by Dr and patient) states... 

    "Has had a cardiac function test by a suitable method and does not have and does not have a left ventricular fraction value of <45 per cent and/or heart failure"

    Now, I am pretty sure I haven't signed this form (I can't be 100% certain though as I have signed some forms) but I know for certain I haven't had any tests.

    So what should I do? I don't want to get my Dr in trouble, but then again, I deserve all the safeguards there are and it has disturbed me that my treatment has been so casual, given the obvious one bad side effect of Herceptin. Too late after the event to start scratching heads hey? Chances are my heart is really good, but I don't know that and more to the point, my Dr doesn't know that, so it's a big gamble isn't it. So how should I handle this? Should I just ring my Dr's rooms tomorrow and speak with his receptionist (doubt I'd be put through to him), should I clarify this with Medicare - but then he might get into trouble. I don't want to open a can of worms or make a mountain out of a molehill, but I definitely feel that.shortscuts have been taken with my care and that that is unacceptable.

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

    Kate - when do you see him again? I would just ask for him to order you an echo. If he argues with you, tell him that everyone else you know who has had herceptin has had one and why haven't you had one.

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

    Kate - your route to take is with your onc not Medicare. I would phone the office. Say you have become aware of the Medicare/TGA requirement for heart testing with Herceptin and you would like to make sure testing is scheduled asap before your next treatment. Just leave it at that and then if you don't get a call back within a couple of days phone back and tell the office again...



    Jenn

  • jezza
    jezza Member Posts: 295
    edited April 2012

    Kate ...my feeling is that if you rang his receptionist and left a message as to your concerns re no heart tests prior to starting Herceptin  your Dr would get back to you quick smart.

    Also...don't let him talk "down" to you. I'm sure he will have explanations as to why he hasn't ordered tests. You only have to read threads on this board to know important they are.

    jezza xx

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

    Kate I agree - you need to talk to your onc.  You can also say that you have 2 other friends who have the same stats as you and their onc ordered the tests, so you looked it up.  I'm a bit concerned that you didn't have a taxane too, but I only had 2 out of my 3 treatments (because of the serious se's) and my onc was as certain as he could be that the two would have been enough.

    As Jezza says - don't let him talk down to you though - you really do have to have these tests - and regularly.  For all he knows you could be one of the few who have heart problems - he'd have no come back if something happened - maybe he has pretty serious malpractice insurance lol

    Trish

    xoxo

  • racy
    racy Member Posts: 976
    edited April 2012

    Hi ladies, how are you all today? Chrissy, I hope you are home.



    As you may have seen on another thread, I had another strange symptom appear yesterday and went to the ER as otherwise the worry would paralyse me. I couldn't get an appointment for an ultrasound till tomorrow. In the meantime, I posted on BCO and someone suggested Mondor's disease so I am hoping that is it.



    Even just among the few of us on this thread, the worrying episodes are frequent. For me, getting an issue checked promptly helps, even if it means an expensive visit to the ER on a Sunday.



    This week is a year since I finished chemo. The time has gone fast. Too bad my hair has only grown 3 or 4 inches. I am excited for those of you whose hair is growing back now.



    Best wishes to all.

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

    Hi Racy, I did see your message. You poor thing with this coming up so quickly and it's never conveniently during the week is it?



    Tomorrow will hopefully come around nice and quickly. Will you be able to wait and collect the report on the same day? Mondors Disease... never heard of it but the internet descriptions certainly sound right for your symptoms.



    Jenn

  • racy
    racy Member Posts: 976
    edited April 2012

    Thanks Jenn. I'm hoping the ultrasound tech will give me an indication if it's ok. They don't take too long to process results anyway, and all services are at the same site- imaging, ER, BS and onc so I should be able to catch up with one of the docs if needed. If the tech indicates b9, I'll go to work and call for results later.



    I'm not feeling too bad since I got help from BCO. The ladies here know more than docs about some of these post treatment effects.



    Everything else is going well for me and it's annoying to have these worries.



    I hope you are going ok and are counting down to the end of Taxol.

  • Linda1966
    Linda1966 Member Posts: 441
    edited April 2012

    Thats the problem and the comfort of BCO in my mind Racy. We are here because we are either in treatment or worried about recurrance or side effects. Before I had the dodgy mammo in Nov I didnt even think to see if there was a forum for us BC er's and was living my life in oblivion about recurrance tbh. Afer finishing chemo and being such a low stage I just didnt think about it much at all.

    Being on this site makes me a bit paranoid about every ache and pain on occasion and I doubt Im the only person that reacts that way. However it is such a comfort to talk with you ladies in particular and I now have a vested interest in every one of your health and continued happiness so I cant not come here. Equally when I can answer a question or even just tell someone to hang on till a more experienced person comes along, it makes me feel just that little bit better and as if the whole BC crap Ive gone thru has helped me to help someone else.

    I am hoping that whatever is going on with you is sorted out tomorrow and is something simple and benign mate.

    Congrats on the milestone. 1 year post chemo is a great step. I hope you can look back and see how far youve come since your last treatment and celebrate in style.

    Hope everyone else is feeling well or as well as can be hoped for and that Chrissy has been let loose from the hospital.

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

    Racy - sending you lots of ((((hugs)))) today.  I'm hoping you'll get good news and as soon as possible.  Waiting is a bummer.  Thinking of you today xoxo

    Chrissy - how are you?  Are you out??

    Lyndal - what at lovely post - just shows how caring we can be for eachother - we really do feel like a family here don't we?!

    Jenn and Kylie - hope your se's aren't too bad?
    Kate - did you tell your onc what you need?? lol


    Hugs to all
    Trish

    xoxo

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

    Morning all

    Racey sending big hugs. Tests and waiting are the pits aren't they. Hope all is well.

    Chrissy, what's happening with you? Lyndal, Jenn, Kylie, Kate, Trisha, Sheila and every one else do hope you are having a good day.

    Having xray guided cortisone injection in shoulder today, not looking forward to that at all. Hope it gives me more motion as I have very little at present. Also hope it might help paib in back which they have a 'wait and see policy' about at present. Going to see what happens when I finish the femara from which I have had quite serious side effects.

    Any way enough of that. Spent yesterday with a friend who has been given weeks. Another friend and I 'kidnapped' her as she is finding it difficult to get any time away from her husband who naturally wants to do everything for her but at present she is fine just getting a bit tired. We had a great time shopping, then lunch and then drove around the coast back to the city. Now planning our next escape day.

    Wishing all of you a good ANZAC Day. DH and I are off for a few days , going round the East Cape to the Hawkes Bay if any of you know it. When we get back must start planning our Aussie trip.

    Big hugs to all.

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

    Just spoke to Kylie

    She's having a bad time with the Taxotere - and hasn't the energy to get on here - please send her your healing thoughts and hugs

    Trish

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