What am I in for?

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Janette
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Re: What am I in for?

Postby Janette » Mon May 15, 2017 10:55 pm

Babysaurs that is the pits to not have access to that drug. Over the years I've seen many drugs including Herceptin unaffordable but they have been made available fairly soon. I hope Ibrance does as well.

There is a petition going around and BCNA seem to be pushing for it. Here is the link to the petition.
https://www.bcna.org.au/about-us/advoca ... -petition/
Janette


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Re: What am I in for?

Postby JudyB » Mon May 15, 2017 10:20 pm

Yes Babysaurus that is bloody c*** I was looking through some posts the other day and wondered how you were going. Every time I read those words, "I have mets" I just close my eyes breath deeply before I can go on and read the rest of the post. I think it is criminal that there are drugs out there that some people have no access to purely because of money. Who gets the right to determine who should be lucky enough to get them or not? I'm not sure how I would cope if i were in that situation and I know that my husband wouldn't cope at all.

I will be thinking of you on Friday when you get more information and I am hoping that the drug they have now put you on does the trick.

:hugs:
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: What am I in for?

Postby The new girl » Mon May 15, 2017 9:06 pm

:hugs: hi babysauras,sorry to hear about your mets that suck big time!! I hope you get the trial mets,it's really unfair for it not to be available for everyone that needs it.
Rosa

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Re: What am I in for?

Postby ruth1 » Mon May 15, 2017 6:36 pm

:hugs: omg Babysaurs this just isn't fair at all and yes having life saving drugs unavailable isn't fair either. I really hope you get on that trial somehow. Please let us know how you go.
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: What am I in for?

Postby Babysaurs » Mon May 15, 2017 3:14 pm

Its been nearly a year since i updated what been happening.
I finished RADS with no real dramas, had ovaries and fallopian tubes removed in August, we finally went on our disneyland holiday in October and then i had my first recon surgery in November. Double lat dorsi with expanders. Recovery was brutal!!! Im fully expanded now and was eagerly awaiting my surgery for exchange. All of thats up in the air now as i found out on April 28th that i looks like i have Mets:(
One MET so far anyway in my second top right rib. How bloody cr*p is that?!?!?
They are 95% sure its mets but need a bone biopsy to confirm but they arent sure thats even possible due to where it is.
Ive been changed to etrazole from tamoxifen now.
My doc was trying to get me onto the ibrance/pabciclib trial, but after a meeting with trial docs on friday i dont think ill get in:( Because i had 2 cancers originally which they think the trial people will see as compromising the results:( The docs agree though that id be perfect for this drug, but now i cant even get it:(
Im told you can only get it via very expensive script or on trial and unfortunately i havent won the lottery yet so probably can not afford it:( Anyone know how much it costs?
How unfair and cruel is it for thier to be a drug that could prolong my life give me more time with m kids and i cant have it because im not rich???
Ill get the official no on friday maybe a miracle will happen and they let me in the trial..........and maybe pigs will fly too
DX 15/9/15 Bilateral BC
Bilateral Masectomy left axcillary clearance
1.3cm Grade 3 IDC or- pr+ her2- / Grade Medullery 3.6cm wealky or+ weakly pr+ HER2-
AC x4 T x12

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Re: What am I in for?

Postby Fighter13 » Tue May 17, 2016 12:50 pm

Hi Babysaurs, I had my ovaries & fallopian tubes out via keyhole too! It was easy and just an overnight stay in hospital. I had my other breast taken off at the same time as my reconstruction which I had 2 years after diagnosis (I was on the waiting list for 11mts). I was hoping for DIEP but unfortunately didn't have the right vessels so ended up with a bilateral TRAM reconstruction and a few months later I had the nipple & areola reconstruction. This was 1 year ago and I feel great, back at the gym and hardly any side effects of Femera. I was on Tamoxifen before having my ovaries out. I really think the exercise has eased my initial side effects as I was forced into chemical menopause and got all those symptoms fast and furious. Hopefully you will breeze though this without too many side effects! :wave: Trula
[color=#FF00BF]Diagnosed 12/7/13 with Multi Focal (20 tumours over 10cms), 3/17 nodes,ER+,PR+,HER2-,Grade 2, ILC, 30/7/13 Lumpectomy & SNB, 20/8/13, RB Mx & ALNC 20/9/13, FEC X 3,Doceltaxel X 3,[color=#FF00BF] radiation for 5 weeks. Bi-lateral Salpingo Oophorectomy 17/11/14 was on Tamoxifen now Femera 6/12/14[/color][/color]

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Janette
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Re: What am I in for?

Postby Janette » Sun May 15, 2016 12:11 pm

Hi Babysaurs, I'm sorry to hear about the BRCA gene but knowledge is power. I hope things go well for you. :hugs:
Janette




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Re: What am I in for?

Postby JudyB » Sun May 15, 2016 10:58 am

Hi Babysaurs, glad to hear you are managing, you are really having everything thrown at you aren't you? I had my ovaries removed about three years ago and it was only an overnight stay in the hospital and very easy to recover from, I had keyhole surgery for it. I was however almost post menopausal so side effects were no worse than what I was already experiencing from the Tamoxifen. Good luck with the rest of your treatment.

:hugs:
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: What am I in for?

Postby Babysaurs » Sat May 14, 2016 6:32 pm

So i managed to get through 10 out of my 12 weelky taxol doses all with no picc line turn out veins held out:) Finished taxol 2 week early due to numbness in finger and toes, was initially very disappointing to not have finished the lot, but oh well. The vomiting continued for the first 3 taxol rounds until the onc gace me lorazapan to get me through lol after id nearly sleep through i all lol.
Started seeing a physc and after being very skeptical its actually really helped with dealing with the way ive been left looking.
Im now 13 double rounds into radio. Because i have 2 separate primary cancers they have decided i needed to have both side done which i insisted i wanted done at the same time. I dont live close to the treatment so staying at the cancer council during the week and home on weekends. I miss my little kids and hubby but i have to say it really is the most bizzare "mother break" ive ever had lol
Im using the mepatil film and so far side effects are minimal finder crossed it stays that way although it sill only early days i guess.
Ive found out im braca1 positive and so my docs are hell bent on killing my ovaries, tamoxifin, monthly zodalex injections and then removal of the ovaries and Fallopian tubes preferably before the end of the year.
Im not impressed about the tamoxifen i had hoped being very weakly positive for only 1 of the cancers id not have to have it:(
Im hoping for recon to start in december or january and can not wait!
Anyone had their ovaries etc removed how did the surgery and recovery go?
DX 15/9/15 Bilateral BC
Bilateral Masectomy left axcillary clearance
1.3cm Grade 3 IDC or- pr+ her2- / Grade Medullery 3.6cm wealky or+ weakly pr+ HER2-
AC x4 T x12

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Re: What am I in for?

Postby JudyB » Tue Jan 12, 2016 6:27 pm

Hi babysauras, having not long finished Taxol I do feel for you. I hope you find it ok. I got bad pains in my feet and legs with that one but many women I spoke to said that Claratine helped with that, didn't do much for me but I'm not sure my husband bought the right thing. I insisted that my oncologist prescribed me with Endone and Tramadol and I got by with those and panadol osteo. Best of luck to you, won't be long now and it will all be oer.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.

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Re: What am I in for?

Postby The new girl » Tue Jan 12, 2016 6:00 pm

:wave: hi babysauras,your oncologist could suggest something to help.
Hang in there,it's tuff but there is an end....Rosa

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Re: What am I in for?

Postby ruth1 » Tue Jan 12, 2016 2:20 pm

I can relate to all you went through with ac chemo. I didn't have to do the taxol so feel for you having to endure that. I too managed to get through it all but the last dose of chemo did me in and they gave me Ativan before I could get through the door. The Ativan is for anxiety and helped enormously. Think perhaps you should ask about using that when needed. :hugs:
Dx IDC 2cm grade 3 ER/PR pos. DCIS grade 3, fam hist metastatic BC. Bi lat mastectomy, FEC x 4, surgical revision pending. AI x 5 yrs Femara

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Re: What am I in for?

Postby Janette » Tue Jan 12, 2016 1:49 pm

Stress can do some awful things to us. I'm sure you are stronger than you think you are. Hang in there!

Thanks for updating us. :hugs:
Janette




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Re: What am I in for?

Postby Babysaurs » Tue Jan 12, 2016 1:13 pm

Hi everyone a little update on me.
Finished AC chemo and had my first weekly taxol yesterday.
I hated AC my bloods went to low that after the fisrt round i had injections on the day after which after a week kicked in and made things much better. But that week after was horrible no energy to do anything, nausea all the time no matter how many meds i took, forcing yourself to eat, fatigue. I could not have done more then 4 rounds of AC by the last round i was so nervous about it i started vomiting.
I think my heads in the way now as yesterday for my first weekly i vomited nearly the whole time, which started before they even got the drugs in! Took 4 goes to get the canula in for the first time, only ever taken one before. Nurse mentioned a PICC line if it continues.
11 more rounds of taxol hope i make it though cos every time im having it i think thats it cant do this anymore im done, the next day doesnt seem so bad and i try not to think about the fact that theirs still more.......
DX 15/9/15 Bilateral BC
Bilateral Masectomy left axcillary clearance
1.3cm Grade 3 IDC or- pr+ her2- / Grade Medullery 3.6cm wealky or+ weakly pr+ HER2-
AC x4 T x12

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Re: What am I in for?

Postby JudyB » Wed Oct 14, 2015 7:58 am

I meant to say on my last post that yes rads can affect a recon. It affects the type you can have. As said earlier I had extensive burning from rads but have since had a recon that I am very happy with. Make sure you let them know that you are wanting a recon and discuss it with them.
DX Sep 09, LB mast with axillary diss. Grd 2 Ductal Carc. 50mm diam. Margins clear. 1/13 nodes. OR+ PR+, HER2- . FEC x 3, Taxotere x 3, RADS x 30, Tamoxifen, DIEP reconstruction April 2011, Femara 2013, Oophorectomy 2013.


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