Friday, 12 June 2015

RESULTS!!

"We must let go of the life we have planned, so as to accept the one that is waiting for us," Joseph Campbell

Well... After 16 months on first line therapy it has become time to part ways. Ugh...I really liked the treatment I have been on for over a year, but we all know that all good things must come to an end. In these past 16 months we had the opportunity to drive down the California coast, go to Las Vegas twice, had an amazing opportunity to go to Toronto thanks to Rethink Breast Cancer and meet some amazing young women, and got to go to Oahu and Maui. Now when I look at it like this then I can say I have lived an AMAZING year thanks to some tolerable and non toxic drugs. For this I am grateful. I have to accept that we were losing ground with the current drugs, therefore on to the next treatment.

Long story short, I had a feeling the current treatment was no longer working as my tumour markers had been steadily creeping up. I know this is not always indicative of cancer progression, but it still made me wonder. The cancer in my sternum and hip has become "active " again which basically means it has outsmarted my current treatment. I wish I had a stupid cancer that just couldn't figure this shit out, ugh. I do not have cancer in my lungs or liver, or even any other bones, so I was grateful for that. You see, I have to find something good in all this because I know it could be so much worse. However, the one area that worries me, and I hate having spots to, is my brain:(. Now I have a new, small, met to my right parietal lobe of my brain. Ok, the "good news" to this is that there is only ONE spot, therefore I'm pretty sure we can just repeat the stereotactic radiosurgery I had last year which I tolerated really well, and seemed like a successful, and easy treatment. However, I need to switch all my treatments. This is the joy (totally shitty, crappy, and overwhelming component) of living with metastatic breast cancer. Cancer changes/mutates and you have to move on to a new treatment. As you move on things become more and more toxic, hence why we all want treatments to work as long as humanly possible!!

So here is the new plan: I will once again meet with my neuro rad onc and discuss where we go from here for my brain....I am leaning towards SRS so that's what I'll do. Now that we know that my brain is kind of my "misbehaving" body part we will need to try and treat it a bit more. Our brains are truly fascinating, especially our blood brain barrier, but this blood brain barrier is starting to really, really, really piss me off!!!!!!!!!!!!!!!!! Herceptin does NOT cross the blood brain barrier, therefore we are going to try Tykerb which is an oral, similar type of sister drug to Herceptin which has shown some promise in crossing over the BBB. Now, since my bony mets are active again I will also be starting on Xeloda, an oral chemotherapy...ugh:(. I will NOT lose my hair on this but it does have side effects. Side effects I really hope I don't experience. This includes, but not limited to, shitting your pants!!!  Ok, that's not how they explain it, but that's how I define it. After the huge shebackles from over a month ago where I was puking and having diarrhea now I get to go on a drug that could make my life totally "shitty," both literally and figuratively!!!! Seriously, that sucks!!!! I'm hoping I don't fall into the "shitty" component side effect. Now the next kind of crappy side effect is hand and foot syndrome where the palms of your hands and soles of your feet can become red, numb, swollen, and possibly blister...wonderful;). Oh, but it gets better as in I never ever thought I would purchase the following, especially since I'm not a farmer!! So my onc told me to purchase a cream to put on my hands and feet that I could purchase from the vet!!! Wait, what? Buy something to use on my hands and feet that we use on animals?? I needed this explained a little better. Well, let me educate everyone on what they use this lovely cream on. Apparently they use this cream, and I quote, on cows udders. Whaaaat!! Cow udder cream for my hands and feet...I wonder how lovely it must smell. Good grief I can now relate to a damn cow!! I mean as long as it works I will absolutely use it and embrace my new "bond" with cattle. I guess now I just need to find a vet to buy this crap from, lol.

That's basically my update for now. Yes, I had a little cry over this because I was hoping for other options as in Herceptin and Perjeta, but thanks to the way Perjeta has been approved I can't receive it without receiving a toxic chemo and I don't want that. I'm starting to realize the frustrations and difficulties related to accessing certain drugs and how they're approved. In fact, it's actually a major piss off!!

Yes, anytime you hear that your cancer is getting worse it isn't exactly a joyful moment, but I must see the positives to all this. One of them is that I get to wait a few weeks to start my new drugs because I am going away on vacay in a couple weeks with my bestie so we get to actually enjoy it, without worrying about my "shitty" side effects. The very fact that these antihormonal therapies lasted me well over a year is a blessing because many people don't even last a year, so I really shouldn't complain about that. Lastly, I may be one of the lucky ones who doesn't experience any side effects!! Never say never;). Plus, I get to experience purchasing cow udder cream...I mean I'm all for new experiences, so let's knock this stupid cancer down and move on. I have too many vacation plans to let this slow me down anytime soon!!!
 
 
 Last Herceptin, for now anyways. It wasn't the greatest day, but it also wasn't the worst. It's just time to start a new chapter.
 
 

17 comments:

  1. Arrrggghhh. Fuck fuck fuck. I hate progression news. I also hate that Perjeta access includes Taxotere, I know some people have gotten around it though. So ask around... I think there are methods. I have heard to put the cream on at night and wear gloves/socks with Xeloda - although I hope you don't need it. *hugs* let me know if you need anything. Otherwise I am over here swearing and hoping you get great results from the next round of treatment.

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    1. Thanks for the kind words Mandi:). I hate progression news too, especially when you feel really good!! I feel as though I can't trust my body anymore:(.

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  2. Hugs. I admire your positive spin on things. Stay strong.

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  3. Judit, I'm so sorry to hear that your treatments are having to change because of this stupid, dumb cancer!!! I just want you to have to best time EVER down in Vegas with Lexi!!! I heard you have already got tickets to the Thunder Down Under....lol

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    1. Hahaha, you crack me up! I will make sure to share any pics from our trip with you;)

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  4. Dang that sucks. I guess the old saying one day at a time, really is the answer. I hope you can tolerate the new drugs. I used to get that udder cream at Walgreens, for my cracked heels.

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    1. Thank you Ginger. I'm hoping it's tolerable too!!

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  5. Boo! Sorry to hear you didn't get the results you were hoping for. But I'm crossing my fingers this next treatment is easy peasy and sans shitting. Thinking of you. Love you Judit!

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    1. Hahaha, sans shitting would be a dream!!! Thanks Steph, love ya too friend;).

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  6. Yes I did the research and the tykerb:capecitabine combo seems to be most promising for cns mets. As it crosses bbb.

    I'm a perjeta pusher. I was first in Canada to get it (yes with taxol) back in 2013. I did 9 rounds with taxol and herceptin then stayed on herceptin and perjeta. Dozens of liver and lymph mets up to 10cm. NED after 1 year, still there another year later. I could have done less taxol so maybe if you only did 1-2 they'd give it to you. But I don't think they mix with tykerb and the bone drug.

    I have side effects though and live on zofran for nausea and oxy for bone pain/severe runs. (Been there ;) ) and fatigue. Not everyone feels that bad - I struggled with herceptin too.

    What about kadcyla for the bony mets? Super herceptin........

    Prayers and hoping hugs this combo works for you and you get some more good experiences. I'm just trying to enjoy being mom several more years......

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    1. Thanks Patricia! I will give this combo a try, and simply because of the CNS met, but Kadcyla is still an option in my future which is great because I have heard so many promising things about that combo!! I hope you're doing well!!

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  7. For what it's worth, when I went thru radiation after chemo and lumpectomy 4 years ago, the nurse at radiation oncology office recommended (& gave me lots of samples) Udderly Smooth- which sounds like it could be the same thing you mention. I never felt, or smelled, like a cow :) http://udderlysmooth.com/ And I have even seen it at a Dollar Tree or 2, as well as walmart so it's not stupid expensive. Speaking of that, I have no idea if this will apply in your treatment, and forgive me because I just found your blog 10 min ago so this is the only post I have read, but Emend make a major difference in me never getting sick (throwing up) from the chemo I had. I have told other women about it after they were in treatment, and their oncologists hadn't mentioned it, and they both felt it made a huge difference in the rest of their chemo sessions. www.emend.com Don't mean to sound like some stupid spokesperson, just sharing things that made things easier... if even 1 person finds them helpful, I'm ok with that. <3 and sharing the hope of great results and progress for you with the new treatment.

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    1. Thanks for the great tips!! I ended up going to Walmart and they did sell the cream there so I bought some;). I will also keep that in mind if I develop nausea!! I hope you're doing well!!

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  8. Good luck with everything! FYI the cream you refer to is available in drug stores in Canada...so it is not so extreme as it may sound...but it is v helpful. I put it on my hands and feet and wore cotton gloves and socks to bed and that worked for me. Stock up on cotton gloves (from a pharmacy, not from a dept store!). The goal is a return to stable status...I'm wishing for that for you. So glad you are making the most of the good times ...that's the way to go for sure! Best, Gail

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  9. For some reason I could not post my qualifications to comment... Ive been living with bc mets almost 12 years now. Sincere wishes for successful treatment. Know that it is not uncommon to have dosage reduction on Xeloda to make side effects more tolerable...if you can't handle it tell your onc, you are not being a wuss!

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    1. Thank you for sharing this Gail!!! When I hear people such as yourself, who have been living with this disease for over 10years it gives me so much hope!!! Thank you so much for sharing, and I truly hope you're doing well!!!

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