Australian Sisters
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Keeping everything crossed that you get a good report, Carol.
Heading back to the city today, two appointments for the day. I see the Rads Onc for one month check to make sure the rads did their job.......they have, the pain is almost gone except when I cough sometimes but that's okay. This arvo I see the Opthamologist, he want to polish the front of my lens to make my sight even crisper. It will be done in clinic and I just have to sit for an hour after then I'm good to go.
Not sure if I need to contact my Onc, I've been on the new regime since Saturday, so today being day five.......I'm very itchy but my skin is ultra dry too so not sure if the itch is allergy or dry skin or both. I probably should ring just in case. There, I knew I'd get good advice from you all.......lol.
Weather here is about to heat up again and supposed to be in the 40's early next week........guess where I'll be? Yay! You are soooo right, house closed up, aircon blasting. Stay cool everyone! If we are coping it I'm pretty sure some of you will too.
Take care.
Love n hugs. Chrissy
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Hi Chrissy, thanks for sharing your cheerful attitude to all this. I had to smile about the three crochet rugs. It’s such a special thing to do for the girls. My mum started a tradition of making a single bed sized rug of woven squares for my grandchildren. They are lovely and the kids really think they’re special. All nine of them! Poor Mum!
All the best with the multiple meds - hope they play nicely. But oh dear, temps in the 40s? Not much of an ad for Burra, I think I’ll stay here in Oyster Bay for now, Sydney traffic and all:-) Keep cool and comfy.
Li
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Thanks girls I start tomorrow xx
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Delvzy, good luck for tomorrow. Will be thinking of you. I hope all the little suckers get completely zapped. Keep in touch and let us know how you go.
Chrissie, Yes, itching is certainly a side effect from AA. My skin was worse on Xeloda. I have cortisone cream that I rub mainly on my legs as that is where the rash is.
Well I had my Fulvestrant infusion yesterday afternoon, and my normal Oncology nurse was away on holidays. Lets just say, that she has that magic touch as it was pretty excruciating yesterday. And today, I feel like I have the flu, every part of my body aches. I find if I keep moving then it goes through my system quicker, and if I rest, then I just feel more achy for longer, so I am going for a walk along the beach after I have my shower.
I have received my Draft Letter from my Federal Member of Parliament,Rebekha Sharkie and I have almost 2,500 signatures on Change.Org for Kisqali to be on the PBS for all Metsters instead of first liners only. The policy department from Rebekhas office said that I have more than enough signatures, but I am also going to get written signatures to make it more well known. Apparently it is the drug company (Novartis) that is holding back, but I figure that the Federal Government has the strength and authority to discuss this with the drug company and it is probably something to do with getting the right price. America and Europe and other countries are already including all metsters, so Australia needs to be with the times.
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Mandy,
Brilliant - thank you for your time and for doing this. I have found and signed the Kisqalipetition.
This is absolutely about dollars - the yearly cumulative incidence of BC mets ( as best I can find it is about 5%).
https://www.mja.com.au/journal/2012/196/11/inciden...
However we know that 20-30% of the BC (18,000 plus BC cases predicted for 2018) eventually metastasizes.
Opening up Kisqali to the entire mets pool would probably triple the proposed budget. Novartis will sell it for what it wants to - independent of where one is in the treatment regime- and the gov - given the potential backlash - onslaught of new studies proving benefit - we are now getting OS data (early on really only PFS was accessible because of the way this studies are designed in terms of follow up) had to be seen as doing something. But it was a very small win last year.
Palbociclib got accelerated FDA approval FEB 2015 (granted only initial in 2015) but heck that is 4 years on, when dealing with a group of women whose current ( albeit old) quoted median survival at 5 years is 36%.
https://www.fda.gov/drugs/informationondrugs/appro...
It is infinetely stupid and ultimately more expensive not to have these drugs available.
No one is counting the expense of blood tests, oncology day clinics, scans, visits, potential complications, ICU stays...we treat with BC with drugs that may have a higher S/E profile but dont bother to add the dollars when sepsis or organ failure occurs. As more and more women with metastatic BC reach the 5 year mark and beyond - these add up.
So my question is not can we afford to have CDK4/6 on PBS ? but in the current medical landscape can we afford NOT to have CDK4/6 on PBS?
😊🐣🌷
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Hi all......I'm finally home, just in time for a real hottie tomorrow 😝.......yuk!!! Rads onc is happy but did say that should I need it again on the same area it can be done again as they kept the dosage low enough for this to be so. Then off to the Opthamologist to get my right eye layered......sounds scary but absolutely no problem or discomfort at all. The object being to make the lens super clean and clear.......and guess what?....it works!!😁
Just as well I rang the onc in between these two appointments as he said allergy but doesn't know which one is the cause. So....stop both, take antihistamines until symptoms go then reintroduce firstly the Aromasin for a week and then add the Affinitor. Hopefully it won't happen again and if it does, we will know which one is the culprit. What a pain in the proverbial........lol. Never mind, so long as I can get it sorted before we go away.
Off to the Cardiologist tomorrow, not sure what he is going to say but I guess I'll find out tomorrow and yes, it's going to be a scorcher........bugger!.....just super glad that the car is airconned!
Hoping you are all doing okay.
Love n hugs. Chrissy
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I had the first radiation yesterday to the lining and it was ok, only took 10 mins.
Chrissy I guess u want to get all this sorted before u leave soon xx
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Judy so glad your first rads went well......here's hoping it get those little interlopers on the run.
You are right about me wanting it all sorted before we go away but if not I'm not going to sweat it.......or at least try not to.😁 Shit happens and this is just another bit of it.
Saw the Cardiologist yesterday and he wants another echo done in a couple of weeks and then I see him second week of Feb. He's still concerned about how out of breath I get but my guess it's more to do with the COPD than the heart. So far he is not changing my meds although the blood pressure is not as low as it was a couple of months ago.
Take care all.
Love n hugs. Chrissy
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Hi all
I saw the Oncologist and everything is all right, next check up in 3 months.
On Saturday at work I started to feel really sick and came home, was sick Sunday as well. Luckily today I felt better but still went to the GP to make sure that it wasn't to do with my bowel. It's funny how you're glad to just get a virus when you have cancer !!!
Delvzy good luck with treatment.
Chrissy good luck with yours as well.
Carol
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Phew Carol!! Glad everything is fine for you........bummer re the virus and yeah.......funny how your mind has a tendency to always go straight to cancer even if it's a lowly cold.....lol.
Been taking the Aromasin for four days and nada from it so far so I'm guessing it's not the culprit.....mind you, I am still taking an antihistamine every day and will continue to do so as it almost stops my massive sneezing episodes as well. Giving it another couple of days before I reintroduce the Affinitor and keeping my fingers crossed we don't have a repeat of the itches etc.
Judy, how are your treatments going? You are always in my thoughts and I really hope things are going okay.
Try to stay cool if you are coping the heat as we are......43 for the next three days and it was 42 today. I checked the forecast a little while ago and it seems that it is going to be cold on Sunday, a whole 28 degrees! Don't quite know how I will cope really.😂🤣😂
Love n hugs all. Chrissy
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Hello all!
Judy, I'm hoping the rads are helping? I think of you everyday, sending gentle hugs every morning xoxo
Carol - great news that all is ok, and yes, having a virus and celebrating (even if it's just a little bit) because it's not cancer is something we all do. I remember feeling so happy and relieved that a scan of my spine showed extensive damage to my lower discs, yes I still have pain from it, but it wasn't mets!
Chrissy - hope the Affinitor doesn't react with you. Can you please keep that heat instead of sending it our way every day??!! We are expecting 41 tomorrow, then 40 on Thursday and 41 again on Friday. Enough already, this is Canberra!!
Hope everyone else is going well and escaping the heat.
Trishxoxox
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Southern Sydney where we are might be almost the coolest place in Australia at the mo. We have space. Shall I call a meeting? All welcome:-)
I’m just enjoying Taxol #11/12. One more week to go, before I graduate to radiation and......
Being early BC seems so simple (all things being relative) compared to what some of you are needing to find the patience and courage for. Love to you all
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Sue, what a great idea, a meeting is just what we need :-) I'll be up in about 3.5 hours!
One more Taxol to go, yay! I hope this one and the last one are gentle on you xoxo
Trish
xox
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Hi Girls day 3 of brain rads with 2to go, with the heat and everything I have been sleeping a lot.
Feeling nervous as I get results tomorrow of spine MRI I don't think I can face more bad news,
Glad it was only a virus Carol and Chrissy hope u get on top of what is causing your allergies. I am struggling emotionally as I feel I have so much more to offer life xx
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Delvzy ...praying you receive great results tomorrow...
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fingers and toes crossed for you Delvys.
Best wishes all.
Stay cool if you can X
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Judy, keeping everything crossed for you, please let us know how you go xoox
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Sleeping through as much as possible might be your body looking after you. Hope the results are good, and not more to deal with.
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Trisha-Ann did you get caught in the traffic? Didn’t see you at yesterday’s meeting;-
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Sue -
It's still bloody hot here - 41 for the third day and tomorrow will be 40. Geesh, Canberra is sweltering and while we do get hot days, this is over and above!Judy, hope you are ok ((((hugs))))
Trish
xoxo
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last whole brain radiation today. The MRI found small spots in my spinal fluid but nothing intrusive . They have decided to watch and observe . Feeling very down atm and this hot weather doesn't help xx
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Judy, so glad your rads are done........keeping everything crossed that they were effective. Oh poo on the little buggers in your spinal fluid.........can't say I blame you on being down, I think I would be too and as you say, this hot weather sure doesn't help anything. Sending huge gentle (((((((hugs)))))) to hold you up while you find your strength.
Love n more hugs. Chrissy
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Judy ..thinking of you ...I'm sure the heat isn't helping ...
Feeling for you all that live where the temperatures are so high this year ...Really Brisbane temps have been fairly typical this year ..no extreme highs ..but I still feel exhausted !!! I guess the humidity here doesn't help ..
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Judy - how are you? Have you had a break from the heat yet? I'm still sending lots of gentle ((((hugs)))) everyday.
We've a small reprieve from the heat, it has gone from four consecutive days over 40 (a record for Canberra) to days where the temp only gets to 34 or 35 lol. But at least the last couple of nights the temp has dropped from 22 to around 16, which means the house has a chance to cool down a bit. That's the problem with brick, once it heats up, it takes ages to cool down. We are coping, but only just!
Trish
xoxo
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Hi girls!
How are you, Judy? Thinking of you and hoping the rads were successful.
Heat here has gotten better, the last couple of days have been much cooler and nights have been dropping to 14 over night......perfect for sleeping. Unfortunately, today they are supposed to start rising again and tomorrow, Wednesday, Thursday and Friday are supposed to be high high 30's and into the 40's again. I've got everything crossed that this will be the last week of extreme heat and we can get back to normal summer.
I have, at the moment and for the last couple of days, a very swollen face.......yep, what I thought was the start of a blind pimple on Friday is, I think, an infected bite of some sort.......it is soooo sore! I'm going to make an appointment with hubby's doc today to get some anti b's as I can't be bothered trying to get to mine in the city. At this point, almost any doc will do.. I line up once again for my Xgeva shot again tomorrow and I'm thinking that the onc will be happy that so far so good with being back on the Aromasin and Affinitor.........I'm keeping everything crossed that it stays that way.
Stay as cool as possible.
Love n hugs. Chrissy
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Chrissy - hope the antibiotics work! Wow, do you know what bit you? Bob had some bites on his arm a few weeks ago, and thought it was shingles (he's had shingles before) and the antibiotics worked fairly quickly.
xoxo
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No idea about what bit me......I can only guess a mozzy. I thought it was a blinder starting but it just got sorer and started swelling. It has a pussy centre now and under my eye is really tender to the touch. I've been tempted to pierce the centre but have stopped myself knowing that that could make it worse.
I see the doc later today so I'll let you know what he says.
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ooh Chrissy that looks sore. Cellulitis is my guess? I hope your doctor can sort it out. hugs. xxx
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Delvsy, hope that radiation knocks those nasties away!
Chrissy, hope your bite responds to treatment... looks awfully sore!
For all of us sweltering, remember...Winter is coming
Good news for me after getting my CT, bloods, mammogram and ultrasound done last week, in the past 11 months my lump has gone from 28 x 27 x 67 mm to 17 x 11 x 16 mm. My liver met is so small they can’t measure it - bloods etc all good!
Kisqali/femara is working well for me atm, but is not yet available for those needing second line treatment. Mandymoo has got a petition going - would be great if everyone could sign it, then post the link to your social media pages. - link below
Cheers, Jackie.
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Seen the doc and got some anti b's.......he also took a swab to double check what we are dealing with but did say if this gets a lot worse even with the anti b's he would definitely look at IV anti b's. Keeping everything crossed that is not needed. He seems to think mozzie and low white cell counts.
Jackie, glad to hear your great results! Yes, I've signed Mandy's petition.........I totally disagree with any of these drugs being approved for first line treatment as it puts girls like Mandy and I who were dx earlier at a distinct disadvantage........so unfair.
Off tomorrow (again) down to town for onc appointment and Xgeva shot.......yep, just three weeks between but he wants to time it so I get one just before we go away and then get one as soon as we get back. So far this time the new meds and my system are behaving themselves......yay!!! Got some ulcers but if that is the worst of it then I'm okay.
Love n hugs all. Chrissy
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