Australian Sisters
Comments
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Ok - where is everyone?
Hopefully you are all well and too busy to log on here :-)
Chrissy - are you sprung yet? Did you get a big bear hug from your DH?
Trish
xoxo
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I am here Trish. Finding it difficult to move away from BCO although I feel as though I should move on now that Rx is finished. I have learnt so much here.
Hope you are all OK and that Chrissy is getting mobile again
Interesting about the Melatonin and how many of you take it. Seems silly that it is illegal to import it to Oz. I'm going to purchase some. Do you have to take it every night or just when necessary - I might have asked that before but can't remember the answer.
Also some technical help required please. How do you put a weblink into a reply on BCO. I tried on another thread but it wouldn't paste.
TIA
Gerri
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Hope you get sprung today Chrissy!!!!!!
Sorry for my silence. This last Taxol/Herceptin (5 of 12) has really hit me a bit harder. The bone and muscle pain is making me very unmotivated to say the least. If I could take the next 7 weeks off work I would at this point...
Having said that - I am at work today (and was on Monday and Tuesday - did 1/2 days). I'm taking the Panadeine Forte but not sure it's actually doing much this time.
The only difference this time is that because I didn't get the "hay fever" like symptoms the next day I didn't take an anti-histamine. Am thinking that is probably the reason for the increased pain. Will make sure to take an anti-histamine on Saturday after the next treatment on Friday.
Did anyone get mild peripheral neuropathy during treatment? I get it in my finger tips intermittently and it is weird because when I have it the ends of my fingers look like they do when you've been swimming for too long ie: all wrinkly. And when I press on the skin in that area during that time it doesn't spring back. Very interesting and a bit weird...
Jenn
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Just read my emails and got one from my gynae to let me know that my ca125 marker test has come back normal. This means that the cyst on my ovary is not likely to be cancerous. Still have to go back in 2 months for a follow-up ultrasound to keep an eye on it - but good news for now!!!!!!!!
Jenn
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Jenn - sorry you are finding Taxol hard. It is a hard treatment, and I think you are doing well to be going to work ((((hugs))))) I didn't have anything like you are describing with your fingers - maybe someone else will be able to help. Great news about your cyst though xoxo
Gerri - I take the melatonin most nights, but not every night. I don't want to build up resistance to it, so try not to take it every night. As far as the link people usually type the word link or click here and you highlight that and then click on the little chain icon on the tool bar just above where you type - you need to type the url in there (it might be easier to copy and past the webpage into it). Hope this makes sense - if it doesn't Sue will be able to explain it better - she's the expert when it comes to "technical stuff" lol
Trish
xoxo
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The trick is copy the url from the page and after you paste it here, press return
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Hi girls! I'm still in hospital but the doc said tonight that if all is well I may be able to go home Friday. The INR levels are getting sorted slowly but now I've come out in an allergic rash................if it's not one thing its another! Not sure what I'm having the reaction to but what ever it is, I guess I'll be getting an antihystermine to try and control it. The rash is driving me nuts and is so sore!!!!
Gerri I take Melatonin when I need it but for a long time I did take it everynight without any problem.
Jenn sorry to hear that you are being beat up by your treatments and sure hope that it gets better quickly.
Hope everyone else is doing okay.
Love n hugs. Chrissy
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Almost made it through a whole day at work and then started getting some shivers. So popped up to the chemo suite and spent 2.5hours there getting my port accessed to do bloods and the all clear to come home...
Blast!
Jenn0 -
Chrissy - hope they release you soon - what a bummer
Gerri - I've bee ntaking melatonin every night for ages now without any problems0 -
Jenn (((hugs)))) how are you today?
Chrissy - (((hugs)))) to you too - I know how itchy and uncomfortable a rash can make you, I have super sensitive skin and almost anything new can set me off. I have a huge tube of cream .... and I can't remember the name - I get it on script and have to put that on and it clears it up. Interestingly my rash always appears on my tummy, no matter what it is I'm allergic to. Apart from when I leave a bandaide or dressing on for too long, and that reddens and itches up at the site. Hope you get some relief soon.
Trish
xoxo
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Thanks Trish - I'm OK today. Back at work (glutton for punishment) this morning and will see how long I last. Definitely won't be trying to stay longer once I tire out as I think that may have been my problem yesterday.
Chrissy - Only 1 more night to be stuck there. Hope you have managed to make your bed comfy with your own special blanky or something (I know I always pack mine for going away) and that you've gone around and stolen all the most comfortable pillows for yourself by now.
Kate - how is the rads planning going? I don't have my appt with the rads oncologist until the end of May. Already had one in March where she sent me off with 3 different treatment options. Poor thing doesn't realise I'm going to be her "problem child" as I've done my research and am going to be going back and asking for a hybrid version of treatment. Hopefully someone will have warned her that I don't like to be just slotted into the usual "box" for treatment...
There was a new study released by Memorial Sloan Kettering just yesterday showing that for women with breast conserving surgery and positive sentinal node/s with no axillary clearance surgery there is no survival or local progression advantage to radiating the nodes. I'm all about risk and benefit so having weighed those up I'm still going to agree to level I node radiation but not level II and III (both of which are actually up near your neck not in your armpit).
Jenn
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Hi everyone, We had a lovely break up the Coast. We left the Coast early yesterday to get my bloods for chemo, then they rang and delayed it all, so lots of hanging around and then finally my first Taxotere.
Finished very late and totally exhausted but it went ok, hubby gets to give me Neulasta tonight, mmmm. So far not too many SE's it is fantastic to not feel nauseous.
Chrissy - I hope you get out tomorrow.
Lots of hugs to everyone, Kylie
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Hi all. Boy it has been quiet here, but I take that as a good sign, that at least we are doing other stuff ie working, holidaying etc.
Jenn, I'm so impressed that you are working at all and it's good that you're pacing your work with how you are feeling.
I start my radiation first week of May and my 1st Herceptin is next Friday. I've had the most incredibly bad dry tickle cough and near my port now feels like it is pulled out or something. My only concern it that as the line goes into the jugular, trying not to feel panicky but what if I cough the line out of that?? probably not going to happen, as otherwise I'd be dead by now I'm sure. I have coughed so hard and uncontrollably I've seriously thought I might cough up a lung!
Kylie, Í'm glad your over your nausea. The girls here told me ages ago that you need to stay on top of it, and not wait until you have it to treat it, and boy were they right. I can highly recommend the Stemitil suppositories, they worked really well.
I've upped my melatonin to 6mg a night (3 tabs) and I'm going to order them online (thanks for the link Susie). I can't believe what a rip off the prescription ones cost. I can get 120 5mg tabs for $16.95 plus postage. Certainly a lot better than the $48 for a measly 21 2mg ones. I had the best nights sleep last night that I've had for many weeks. So good in fact that I slept through Paul getting up and going off to work - which meant I didn't pack his lunch. It's only a little thing, but I feel bad for not doing it. He has told me that he grabbed a tin of baked beans - kept for such emergencies.
Hope everyone has a great day and Chrissy I've been thinking of you too and hope you do get sprung tomorrow. xxx
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Kylie - I was wondering how your little break went. I hope your first Taxotere is gentle on you - but as I said to you the nausea isn't a problem on it, so glad you aren't feeling sick.
Trish
xoxo
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Kate - don't think you can cough your line out of your jugular, but then again, I'm no expert! I would imagine that you'd know about it pretty quick if that happened.
I did pull something not too long after mine went in, and I was convinced I'd done something to it, so had it accessed to check and it was ok. If your feelings about it continue - just pop in and get it checked. It'll ease your mind if nothing else.
Sounds like you need some cough medicine or something for your cough though!
Melatonin is a wonderful thing isn't it. Don't feel bad about your DH though - I'm sure he understands lol
Trish
xoxo
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Just jumped out of the shower and when my 'hair' is wet, I could definately see a 5 o'clock shadow of the dark hairs - yippeee. I'm hoping that the Herceptin really doesn't stop the growth. Don't think I can hide away for a full year. xxx
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Kate hair!! Yay!!
Herceptin defenitely will not stop your hair growing - but it might slow it down a bit. Mine grew all the way through Herceptin, but once I stopped H in Jan, my hair grew like crazy. After it started growing back after last chemo in late Feb I had two very minor trims somewhere around Sept adn Dec. Since 17 Jan I've had 2 full trims and need another one now. But I keep my hair fairly short, so used to get a trim every 5-6 weeks anyway.
Trishxoxoxo
xoxo
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Gulp girls!! Oncology just rang me and casually said, 3.00pm tomorrow for Herceptin. I told them it was next Friday, but they want me in tomorrow. So not mentally prepared. I know logically nothing to worry about, but it's a big thing to me, and I don't like now that I don't have any time to be prepared for it. Another thing, it's supposed to take 3 hours I was told for the first one to monitor you closely for side effects, they'd better not try to rush me through so they can start their weekend!
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Oh Kate ((((hugs))) honestly though - you will be fine. I used to go to work, drive myself to the hospital have the Herceptin, and then drive back to work. No problems at all. It did get a bit hard towards the end - I was tired and headachy that night, and sometimes the next day, but compared to chemo - it really was a piece of cake.
They do the first one fairly slowly so they can see if you have a reaction - but if that's going to happen it usually does within the first 10 minutes.
I know you have a problem with Herceptin but honestly sweetie - you'll be fine xoxoxo
Trish
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Did anyone see an item on ABC news about BC? I was at the gym and saw it but couldn't hear as didn't have headphones.
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I saw it - they say they have identified 10 sub types of breast cancer based on genetic features - you should be able to watch it on the ABC News site.
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Thanks Sue. There was a post on here today about that but the linked article was not too informative.
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Hi Racy
I've found an article that talks about it here: http://www.montrealgazette.com/health/Breast+cancer+clutch+diseases+according+Canadian+British+study/6479715/story.html
Sorry - had to cut and paste - the link in the tool bar won't work for me. Just copy the above address and paste it into your web browser.
Kate and Jenn - thinking of you guys today as you have your treatments. Jenn - hope this one is gentle on you. Kate - I know yours will be gentle - you won't have any problems xoxox
Kylie - how are you going today?
Chrissy - hope you are going well too?
Trishxoxox
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Thanks Trish, the last one a week ago hit me hard and I'm still aching all over from it so not looking forward to piling some more on today...
Kylie - hope you are feeling ok today.
Chrissie - freedom day!!!!
Kate - good luck. I have had no major problems from the Herceptin. The first infusion I did feel a little nauseous as they ran it so they slowed it down and gave me meds. Since then I have made sure to have a light lunch before and I get a small pack of plain Smiths chips and start eating them when the Herceptin runs. For some reason the saltiness is perfect!
Hope everyone else is ok. Racy - it's racing season - are you busy busy busy with that?
Jenn0 -
Just back from the onc's. Despite all the horrendous s/e's I had from the zometa back in November, they were still pushing for me to have another lot of it but were going to give me something along the lines of but not dexamethazone first. Thankfully, when I remeinded them of the 2 cracked teeth since the last lot and told them I wouldnt do it unless they xrayed my jaw first to check for deterioration, they changed they're tune and I only have to get another bone density done in September which is just before the 3rd one would have been due. She reckoned if the bone density test showed further deterioration I would have no option but to contine with the zometa. I know one thing, I wont be missing a single calcium and vitamin D pill till then.
Now I can relax till 8th May when I have to have the f/u us on my boob.
lol when I said I would love to have a 2 month holiday from arimidex she said we could change you to tamox, then she was verbally listing the s/e's of that and changed her mind and said I have to stay on arimidex. I did ask if there was going to be any other meds after the 5 years and she said they had no stats to say further treatment was viable, so I just need to make it thru to Aug 2014 and I can get off the drugs. Please god the time flies. I cant be the only one that feels her life is in suspension thanks to arim/tamax/femara etc. She completely ignored my question as to whether the arimidex was causing my brain fogginess. I find they tend to ignore any question that we know from BCO is relevant but that they dont have scientific answer for. My mum walked away saying she hates my onc haha.
Jenn and Kate, huge huge hugs. Hope you have minimal s/e's and get your energy back fast.
Hope everyone else is doing well. Hope to catch up soon.
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Jenn, it's racing season in Sydney at the moment so I have been following that closely. Last Saturday I went to the races in Brisbane as there was a special catered lunch event on.
It's hard for me to keep up with BCO while working. I do read here every day but don't always have news to post. I still try to follow other threads but sometimes the bad news is depressing and makes me question if I should still be here. But I learn a lot and hope to help others by sharing what I have learnt.
Yesterday I had my six month followup with my BS which was ok according to his examination.
Less than 4 weeks until..... I will post on Facebook!
Chrissy, are you home yet?
Lyndal, I am hoping to stay on medication as long as possible. Fortunately I have no side effects but I have read of too many late recurrences for hormone positive tumour ladies. Hopefully by the time five years is up for me, there will be therapy for beyond five years or a cure!
By the way, Jenn, do you know why the Oncotype test is not covered by insurance in Australia?0 -
Hi girls!......Nope not home yet! I am to be kept for 'a few more days' . Doc is not happy about my reaction to the Pulmicort and has now put me on Prednisolone as well as a topical cotisole cream for relief from the rash that has already blistered and is weeping..................actually, I'm a bit of a mess right now but hopefully in a couple of days the prednisolone will kick in and start clearing the jolly thing.
The doc got some of the gene results back and informed me that I have a gene problem that makes me 5x more likely to throw a DVT so that puts me automatically into a high risk area for the rest of my life.................I sure hope it doesn't put my surgeon off doing the other knee!
Kate I hope you did well with your Herceptin today and it hasn't given you any trouble.
Jenn hope your treatment went well and you are not feeling too bad.
Kylie sure hope you are still feeling good!
The rest of you girls, I hope you are all doing well and looking forward to a great weekend!
Love n hugs. Chrissy
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(((((((((((Chrissy)))))))))))) - you just can't win eh?
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I feel like crap Chrissy, but obviously not as bad as you :-/. Wish we were in the same city so I could come and keep you busy chatting for a while...
Jenn0 -
Chrissy, time for me to say a prayer for you. No matter how well you are looked after, being in hospital is not fun. I hope that you recover sufficiently to get home very soon.
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