So Avastin was cool...virtually no side effects--none worthy of complaining about anyway.
But alas, my good fortune was not to be. Turns out the patient friendly chemo was allowing the tumors in my liver to grow and venture off into new areas.
Kind of a kick in the teeth. I had gotten to the point of thinking "hey, I can do this forever..." and now I'm right back to dreading the whole scene again. So sick of this. So sick of cancer. I must go on. Ugh.
Anyone know anything about navelbine? My next great adventure.
well, FUCK, Dee, what a revolting development. I am so sorry the avastin did not help - yeah, it's so crappy in the aftermath to recall how hopeful one can be and the yippee about no bad side effects. I hope you find the info you need about the navelbine. I will hold out BIG hope that it's the answer for you. when do you start it? just do all you can to fortify yourself, and keep us posted.
ReplyDeletemuch love and light,
Karen xoxo
Yes, fuck indeed TC/Karen. Not sure when I'll start, because once again, the drug is not FDA approved for vaginal cancer so the battle with the insurance company begins anew. So TBD...could be weeks or months.
ReplyDeleteOn the bright side, spring is FINALLY coming to the midwest :)
Thanks for commenting. Your words of encouragement are appreciated more than you know..
~D.
Hi, I have been reading your blog since the beginning but only today I have something useful (hopefuly) to write to you. I searched a forum that is related to my type of cancer (BC HER2+) and I found posts about navelbine. Here they are:
ReplyDelete"I was on Navelbine 6 or 7 months....I found it very easy to take....no premeds which meant no decadron, which I liked. I di have to take Nexium as I got terrible heartburn when I was on it. I dont know that a port is required, but Navelbine is a vesicant, which can be very hard on tissue if it infiltrates into the skin during infusion. I believe it was an IV push drug given with a syringe into the IV, so it is fairly quickly administered. I had hair thinning but not hair loss.....it is a great drug for liver mets....hoping it is easy on you!"
"I have been on Navelbine for over 4 years. I also find it easy to take with my biggest side effects being low white blood count (I get Neupogen and Neulasta injections for this), heartburn, and altered taste buds. I was bald when I started Navelbine and I now have shoulder length hair...it has "thinned" twice in 4 years but nothing that anyone but me noticed.
Also, Navelbine is very hard on tissue and my cancer center strongly recommends a port for infusions. Not to scare you, but my last port malfunctioned last year and I have first-hand experience on Navelbine infiltrating the surrounding tissue (I have a new port now). If it is just for the short-term, you probably won't need one, but if it looks like you will be on Navelbine for awhile, you may want to consider getting a port.
Good luck to you! My liver has been "clear" for awhile now thanks to Navelbine and I hope it does the trick for you."
"I did wonderful while on navelbine --just a little over eight months I was NED for about two years. Easy to take, no hair loss, maybe a little dryness, olive oil or almond oil treatments will do the trick; it's a vesicant which sometimes can cause problem as it will run under the skin, the nurse must monitor you for redness, swelling at the site of the injection and stop the infusion right away. I had a bad burn on my hand for about 2 weeks ouch !!"
Take care, Beatriz (from Brazil)
Thanks so much for the info and sharing some positive experiences with it! Taking with Cisplatin which is tough, so we'll see how it goes!
ReplyDeleteAnd thanks for reading; helps to know someone is out there :)
~D.
dear Dee,
ReplyDeleteI wish I could contribute something meaningful about the Navelbine that would be useful for you. though I can not, I want you to know that I am here for you, cheering you on, sending BIG hope,, and holding you close to my heart. I do a lot of reading and if I find something of interest I will be sure to pass it on. wasn't it so lovely that Beatriz provided lots of useful info?!
much love and light to you, Dee,
Karen xoxo
Thanks Karen. Always grateful for your kind words, and for those of others who read and try to help in any way. My journey is changing constantly, and I struggle to put my current situation into words. So most days I just don't, but certainly appreciate your encouragement.
ReplyDelete~D.