TRIPLE POSITIVE GROUP
Comments
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Angie sorry getting back so late. I loved Decadron. It kept the fluid retention down. Never got restless. I was only on it for a few days but when I was on it I felt so much better. I know, weird.
I had nosebleeds too. I feel it was a combo of chemo, Herceptin and dry winter. Once chemo stopped and spring started they slowly went away. I think I had one more on Herceptin only in August. I have heard runny nose is from Herceptin too.
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Ditto what lago said. The only difference for me is that the day I received chemotherapy/perception/decadron I felt great and was awake all night. I usually updated my blog or caught up on stuff sitting in bed. Onc prescribed ambien but that worked every night except the night of chemo. I didn't have very many side effects. Some tiredness, cold feet at night, and fingertips were a little tingly.
I still have runny nose as do many others. Since I am not on chemo now, I'm pretty sure it is the perception.0 -
Fluffqueen, don't you hate the autocorrect? I'm sure you're typing Herceptin. LOL
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Good catch Kay! I knew what Fluff meant but for the life of me couldn't figure out WHY...?!?
That's funny
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Kay-yes it does make me crazy. This is a new ipad2 and I didn't realize it autocorected. Now I have to find where to turn it off.
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fluff, Settings/general/keyboard/autocorrection. Gotta love technology!!
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Thanks lady Madonna! Now my typos can be my own.
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Lady: Where in NV are you? I just moved back to Florida from NV.
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Thank You Omaz for that link, verrrrrrry interesting web sight and the latest news, had a feeling one day that would be one of the findings, since it seems research where leading in that direction.0
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Arlene, I'm in Henderson. I had the same trouble with constant runny nose on Herceptin and for months afterward. My LVEF dropped to 53% and I had heart palps but I was able to complete H without interruption- Whew!
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fluff, LOL... I hear ya sister! I still have some wicked chemo brain moments :::sigh:::
Hey ladies, I have the amazing honor of being able to speak at an award dinner with Dr. Dennis Slamon next month. My speech is almost complete, but I thought I would mention it because even though it's me standing up there speaking I'm really representing all of us. I'll take a minute to tell "my story" blah, blah but then I'll talk about the frienships that we've formed and the new perspectives that we have. How we're so confused about what we're supposed to eat. How we really want to incorporate healthy changes into our life, complimenting our medical treatments (i.e. less toxic cosmetics.)
What would YOU like Dr. Slamon and a room full of cancer doctors and researchers to know?
I'm so excited to have this opportunity!
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wow Lady_M how exciting! I think the only question I have is "now that treatment is over, what now? Seems like new treatments are on the horizon. Does that only apply to new patients or metastatic patients. Are the rest of us forgotten unless we have a recurrence? They do say there is no cure, right?"0
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When I'm speaking with Dr. Slamon (we're supposed to be seated at the same table for dinner!!) I'll absolutely throw out a few questions about "What now...?"
And I plan to say toward the end of the speech...
I envision a time when the well-meaning inquiry from friends and acquaintances "Are you cured?" can be answered without hesitation "YES, I am CURED."
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Lady - What an honor and how exciting!! Come back and tell us what he has to say.0
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Absolutely Omaz! And to clarify, a CURE for those of us who have already been diagnosed and prevention so that our daughters never will be!
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ladymadonna, i'm beyond excited for you! one of the things i'd love to do in this life is meet dr. slamon in person and tell him from my heart, 'thank you.' i've read the book and watched the movie about herceptin and him and i believe that if i (and many of us here) and been diagnosed several years ago, we might not be alive now. he is a true hero of mine ... he kept at it without giving up. i believe i owe my life to him. please let us know how the evening goes and have oh, so much fun!0
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How exciting Lady. I'm sure you will represent us well! Awesome to meet him!!!
I did my chemo/rads and Herceptin(through #6 since I only did 4 chemos and only 2 Herceptin with the chemo since they stopped me with the heart palps and then started me again) at Nevada Cancer Institute off the 215 and Twain. Great docs, staff and facility. Can't say enough good about them.
Sure hope I can finish all my Herceptin treatments.
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How cool for you lady! Ask him his take on using metformin to help enhance chances to prevent a recurrence in early stagers. I am Getting ready to participate in a study. And his take on the vaccine trial that was jusr aproved to start with humans at mayo clinic for her2 folks..again early stagers.
Good thing I got the ipad because I dropped my phone and it isnt working! At least i can carry this around with me for emails.0 -
Lady Madonna: I'd like to know where Dr. Slamon feels is the institution that gives the most support dollars for breast cancer research - I'm not finding the right words but kindof like what place would you donate your money for breast cancer research where alot of the money actually goes to research.
And by all means, tell him "Thank You" - I am very grateful for all he has done and continues to do.
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Hooray, almost 1/2 finished with Herceptin. Did #8 today. Got a different nurse (only 2 at this facility) and she used the little timing machine and also did a bag of fluids first...only used a small amount of it though but it made me feel more comfortable since that is what I am used to.
Still not sure I'll make it through all 18. I really notice the palps after Herceptin but could be nerves...maybe I should try half a xanax and see if that helps.
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I go for #12 Herceptin on Thursday. I notice those palps for a couple days after an infusion. But my onc has never ordered a MUGA or echo. Not sure why and I've never asked him about it. I may this week. But I don't want to stop the Herceptin...
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pejkug3: Sorry to say this and I think you need to address it with your onco, but the standard is when you are on Herceptin to have a MUGA every 3 months. I may be very wrong but this is what my onco in Vegas told me and now the same with my onco here in Florida. Please check and thanks for your comment....maybe the palps are normal!!!
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I am with ach[urple where should the monetary donations go that will do the most good towards a cure? I am leaning towards raising money for organizations that will help those that are affected with cancer to be able to pay their bills while going through the treatments, esp if they are unable to work. there is an org here in upstate NY that will help with co-pays, insurance. or anything that you need help with.
Lady_madonna I am so envious...you must be a nervous wreck...anyway thank him for all of us!
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ArleneA & Pejkug3 I read that you are to monitor the heart on Herceptin. That doesn't necessarily translate to an automatic MUGA every 3 months. I had a MUGA before I started Herceptin to be sure my heart was healthy enough. Everytime I had a treatment they asked if I had shortness of breath etc., all 17 times! Never got another MUGA even after I finished but I never had any shortness of breath or other issues. If you are having issue this should be checked out.0
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I really can't say I have any issues. The heart palpitations happen one or two times in the day or so after an infusion. No shortness of breath, no swelling in my ankles or chest pain. I get quizzed on all of those things every time I go for an infusion.
Lago, I'm always so glad to see you post. You're such an asset for us here on BCO.
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Thanks Lago. I'm only going by what my onco (a breast onco) in Vegas told me and it was her standard) said was normal...the MUGA before you begin and one every 3 months during Herceptin and my onco here in Florida (not a breast onco) follows the same standard. Guess with all my palps that I am glad. All the doctors do things so differently; for instance, you had 17 and I am having 18...why the difference, who knows?? Thanks much Lago!
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It is interesting how all the oncs do things a bit differently. I trust my onc and he's been pretty good about my continual questions and episodes of doubting him. But he's a research nerd (so am I) and is all about the numbers. I've seriously considered asking him about the cardio monitroing but the idea of more doctor's appts puts me off. I still have pre-appt. anxiety. I wish I could control it but I fail every time.
I'm scheduled to have 18 treatments at this point. New research that could drop in December could change that.
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Arlene I don't think every 3 months is odd. That is how some oncs monitor. My onc is one of the ones that ran the Herceptin trails. I totally trust her. (BTW I didn't even know that about her till I read the book on the making of herceptin).
Pejkug thanks. I love to share but at some point with all these job applications going out I will eventually land a gig. I won't be spending as much time here once I'm employed again. You have no idea how this forum has helped me as well. Just paying it back.
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Just had my third echo today. It was somewhat difficult because an hour before I had my first double fill (both TE) and they had trouble aiming the transducer through the left TE. It was kind of interesting, they showed it to me on the screen. The good news is no problem with my EF so I can continue the last quarter of Herceptin.
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