Bone Mets Thread
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YaY and thank God for the clear brain scan, Dune!!! So happy & relieved for you!
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Dune, very happy for you.
Carla, this disease does screw with your head. I am a cancer epidemiologist and I keep looking at myself as a case of mine. I have tried to remain separate from it, but it is very difficult. The emotional toll is excruciating have you considered a therapist? I couldn't exist w/o mine. Having someone impartial to speak to is invaluable. My DH is exceptional, but I am grateful for my therapist.
Best to all this weekend and I just found out I am to be a nana for the first time! So much to live for now....Myra
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Romansma,
I hope the Ibrance works well for you. Have a great time in Mexico with the girls!
Terri
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Myra congratulations on your coming grandchild. It's wonderful that the kids give us a reason to keep on going. Last year around this time I was helping to plan my daughter's August wedding, Now DD is expecting our first grandchild so I have a new project, to get my house in order for the baby shower. Hoping for good weather so that I can have BBQ in the backyard for the baby shower. His mother wants to be called mama Sue, I still haven't made up my mind if I'm nana or grandma or something else mama Char? Recently switched meds from Gemzar to Taxol only got 9 months out of the Gemzar and I hope that the Taxol will keep things in check for at least another year. Hair is falling out but I can live without hair ( bright side of being hairless,no more tweezing my chin and no more shaving my legs lol) just want be here at least until the winter holidays of 2015 and celebrate with the kids and the in-laws.I'm jealous of mama Sue as she has a good chance of seeing the grandchild grow up. Feeling good that the kids live closer to me (only a few miles but could be hours depending on traffic Hope Christie doesn't close the Fort Lee approach to the GW bridge) than the in-laws. In-laws are 3 hours away.
Charlotte
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accdg to my MO we should be around for thei bar/bat mitzpha or confirmation. I'm banking on that!
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Charlotte - great to hear from you again! Fingers crossed for Taxol. I remember the bonus of radiation being not having to shave my armpits.
Congrats on becoming a grandma soon! Congrats to Myra as well on becoming a grandma soon.
Dune - so glad it's not a brain tumour. Bugger about the new bone mets, but I'm sure they'll get it under control.
Carla - this is my opinion, but I reckon it's shared by others here - please NEVER apologise for being emotional, venting, showing us your sadness, your fear, etc. That's what we're here for - to give you a safe place to vent. Keeping the fear and sadness at bay is damn hard work, and sometimes we need to just not work so hard and let ourselves be afraid and sad. The trick is to not "live" there...easier said than done. I was trying to explain Stage IV bc to my manager and she said..."wow, it's like a total mind f--k, isn't it?" And yes...it is.
Romansma - so happy you're getting Ibrance. Very optimistic for you. And happy you're going to Mexico for a short cruise. How fun!
Thanks for the nice wishes, Annie!
I think I need to start keeping a notebook next to the computer so I can take notes on who's doing/saying what....I know I'm missing people here. No harm intended.
Hugs to all,
Terre
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Well just got a call from my OC going to start next Thursday on Halaven (Erbulin)...Can I get some advice and se on this treatement please...Thanks... and for all of you helping me and others to stay focus I love you with all my heart...Carla
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love you too, Carla! So hoping this kicks this crap cancer to the kerb!
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Carla,
No advice on Halaven, but I know someone can help. I think there's an existing Halaven thread too. I hope having a plan makes you feel more settled.
Myra and Charlotte,
Congrats on impending grandchildren. My dd found out she was pregnant shortly after my dx and that was the best medicine ever. Hard to believe my "baby" will be three next month. Charlotte, I went through the name quandary too. Bubie was out of the question as was granny or grandma. I became Mimi and it's funny when ny granddaughter calls me "Meems". Take care all.
Caryn
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Hi all,
I have a question regarding bisphosphonates (Zometa or Aredia). Any of you getting Aredia? What is the duration of infusion, dosage and frequency? What are your side effects?
Linda
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Hi Linda, Is Aredia, pamidronate? If so, that's what I'm getting. I get it every four weeks, it's supposed to take an hour but by the time they access my port it's an hour and half. I can't remember what the dosage is, but I can check next Friday if you want. For the first 6 I had flu-ish symptoms for exactly 48 hours If my infusion was a 2pm (it's always on Friday) then I knew that we could accept a dinner invitation for Sunday evening because by 4pm it would be like a veil was lifted. LOL!
The very first one was very painful on my bones, I woke up about 4 in the morning feeling like I had been run over. They told me after the fact that I could have taken tylenol, yeah that was helpful. But I never had that again, my onco told me it wasn't unusual at all.
The last 2 that I've had have been side effect free. HTH, Dee
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Thanks Dee. Yes it is pamidronate. And, yes, I'd be interested in the dosage you get.
Thank you! - Linda
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Linda, Can you try & remind me to ask, maybe on Thursday. Chemo brain & all. DH & I laugh that we share a brain & that between the two of us we can't remember anything. I put an alert on my tablet but I'll have to remember to read it!!
Dee0 -
OK Dee.Linda
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Congratulations to Myra and Charlotte! I'm sleepy again so I think that's all I can think of for now. TTYL though.
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Linda - did they tell you to get any and all dental work done now? Before you start? I was on it for about 8 months. First one was yuck; flu-like symptoms for a couple of days. Next two were very mild flu-like symptoms for a few hours. The remaining were flu-like symptoms for a couple of days. They stopped mine because I had a fractured tooth that didn't show on the x-ray which had to be pulled; then I developed ONJ. So make sure you get dental work done before you start the infusions. I don't know what my dose was, but mine were 2 hours each. Drink lots of water before and after. I'm also told that taking a Claritin or similar can sometimes help with the flu-like symptoms.
Hugs to all,
Terre
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dune. - great news. Yes !
Freebird - no apology needed. That's what's great about bco sisters. We get it. I agree the brain is hard to control and if we let it , it can do crazy things to our bodies.
Romansma - so excited you get to try lbrance. Hoping this is the miracle drug we are all looking for. Have a great time in Mexico with the girls. Glad to see you are still getting out to enjoy life !
I am still in the hospital. Bored out of my mind. Def think that's a sign it's time to go home. Hopefully tomorrow.
Sorry didn't take notes to respond to all today , but hugs all around.
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glad you're feeling better, Patty! Hope you get to go home soon because you're all well!
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Thanks KWC. I started Aredia/Pamidronate in Nov 2013 and had dental appt to check everything before starting tx. It seems as if Aredia is used mostly out of the US, I wonder why. The recommended dosage for bone mets is 90 mg infused over 2-4 hours. I'm now getting 60 mg and curious to see if others had their dosage adjusted and why.Patty - good sign if you're bored in hospital and glad you're feeling better.
Romansma - have a great time!
Congrats to future grandmas! or whichever they call you lol.
Wishing you all a good week-end.
Linda
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Hi Linda,
Weighing in on Aredia. I had 16 infusions over a two year period of time. The first infusion did cause flu like symptoms, which my mo had prepared me for, but it was pretty easy after that.I received 90 mg dose over about a 90 minute period of time. Once, they tried to speed it up and I had the f like symptoms again. I have year round allergies so already take Claritin daily. This may have helped, but of course, I'll never know.
Caryn
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Hi Linda,
I'm sure I must be getting 60mg because the infusion takes only 1 hour once they've finished inserting the port etc (I will check for sure tho) My MO said that pamidronate is the only bisphosphonate (sp) that is funded here.
But because of the SE's that I was having she did offer me a once a day pill which I would have to have first thing and no coffee or breakfast for one hour. Luckily the SE's aren't that bad because DH doesn't want to live with me if I don't get coffee first thing!
I can't remember what it's called but will find out. I guess you have to have the funded drug & if it doesn't work out then they will pony up for the next one.
Patty, hope they send you home soon.
Everyone, have a good weekend! Cheers, Dee
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Hmmm, they must do pamidronate differently all over. Only my first drip was in the clinic to check for allergic reactions. For all the others, I just got hooked up to an Intramate bottle and went about my business. Had the option to go back to have it unhooked about three hours later, when it was empty, but I just always did that part myself. if you have the option, I highly recommend it....less time at the clinic is always a bonus.
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leggo, I asked about that & they said no, something about infection. Perhaps because I am allergic to tegaderm etc & have to have just a piece of gauze & paper tape covering my port. Dee
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Ah, that's the difference....makes sense. I didn't have a port.
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Hi Linda, just popping in to say I get pamidronate 90 mg dose over 2 and a half hours. I've been told recently that after next months infusion they may push it to every second month. I started it in September of 2014. First month I felt dreadful but was fine after that.
Patty, glad you're feeling better, hope that means you'll be home soon.
Romansma, enjoy your getaway, you deserve it!
I hope everyone is having a nice weekend. Hugs, Annie
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Hope you're feeling better tonight, Patty!
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Patty, I am sorry I didn't realize that you were in the hospital. I hope you are able to get back home soon!
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thanks for all the encouragement. I seriously don't know how I would cope without bco. Many friends and family have called and came by and I feel their love and concern. But I keep my feelings to myself for fear of adding pain to my loved ones. So very very thankful to have y'all to talk to and encourage me.
I am feeling better and am praying to get to go home tomorrow. Hopefully can take some notes to respond to all but still too lazy now.
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Glad that you're feeling better, patty. I hope you do get to go home tomorrow and rest and recover in the comfort of your own surroundings
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Patty, hope they let you go home. I always feel like I get better faster at home, something about being in your own space (not to mention your own bathroom, TMI, I know, ha ha!!) Keep getting better.
Hope everyone is doing ok. Cheers, Dee
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