TRIPLE POSITIVE GROUP
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...but they do give info on chemo drugs, especially herceptin! they will be checking your left ejection fraction, which is what shows them how much capacity your heart muscle is being able to pump blood out. and if it falls below a certainlevel, i think its 10 %, then they have to stop for a while, to give your body time to recover. i had to stop for three months, because even tho i am a light smoker, my heart tested ar an athletes level, thats what they told me, before chemo. and it fell a lot, so they stopped me. it has mostly come back i think. now if they will stop making me nervous, i WILL stop. i do want to. it calms me down, gets me going, i do like it, but realize its bad bad bad. i just found out the other day, it causes more bladder cancer than lung ca.
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oh yes, that's right Kathec, they do test the LVEF from the Echo/Muga scans. good to hear you have such great fitness levels! you've finished all treatments now?
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yeah. i am taking femara. i was in shape, i had a very physical job. but i do have lymphedema pretty bad, and now....osteoporosis! yay for me! i am starting to think most women don't have as many problems as me with it, look at footballnut! she is coming through fantastically! i hope the same for you too yensmiles.
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thanks KAthec!
i'm really taking chemo pretty well, besides that little concern over the heart rate and bp! 
is osteoporosis partly due to the hormonal therapies?!?0 -
pbrain, you always explain things in a way that we can all understand
and we are grateful to you for that!0 -
Can aspirin treat breast cancer? IMHO a fascinating read...
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Thanks Ashla - interesting read. My mother thought aspirin was a miracle drug and could cure everything. I remember even as a teenager her telling me that if aspirin was invented then it would be the most expensive drug available. She was a smart woman lol.
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Comparing a Muga scan to a Echo? My Muga that was done prior to starting herceptin said my LVEF was 67 and my recent Echo says between 55-60 - insurance will not pay for muga's - only paid for the first one as I had a healing issue with my mastectomy at the time. My MO was not concerned and I was too focused on my liver enzymes the the decision to discontinue chemo than my Echo but are LVEF's typically given in a range versus a number? Also - I have heard a 10 point drop is something to be concerned about but I have also heard that 10 points isn't concerned if you are still high enough - what is high enough? Anyone know this stuff? I will be asking my MO next appt and I really am not too concerned more curious at this point.
Thanks.
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Linda - high enough is above 50 usually. LVEF readings are somewhat subjective - two different examiners can give two different numbers because they are placing a cursor, there is some degree of human calibration. Generally the rule is a 10% drop between tests, a 10 point drop, or a drop below 50. Most people who experience a small drop recover that number later. It is important to have the quarterly exams, but also a follow up exam once you are done with Herceptin to see where you stand.
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I've been off the board for some time....but thought some of you might be interested in this website. Not only lots of very interesting information for all types of disease, but some of his videos are quite amusing! Blessings to all!
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hi all!
As for me my onc changed me from taxotere to taxol which I will have infused for the next 5 weeks. This means that I'll finish chemo the wed before Labor Day weekend instead of mid august
Yesterday I had my first taxol with my 2nd herceptin which stays on the 3 week schedule. In between herceptin and taxol I get Zantac, Benadryl and a steroid. I was so zonked!!
So far so good but no poop today so I took my meds to try and stay ahead of the game
I also got Tylenol 3 in prep for any pain because I hated the percs
I have been told by my onc, nurse and pharmacist that this should be much easier on me.
I no longer need the neulasta shot so am hoping for the best
Tomorrow night we are going to try and have a band rehearsal. Can't wait!
Pbrain I LOVE SCOTT WEILAND! I'm fortunate to have been on stage with him 3 times, met him at a book signing on NYC and a fashion show in toronto. I don't know what it is about him but he's got me! He does appear to be all clean but only Scott knows for sure!!
Wishing a good evening to all!!
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Hope the taxol is kind to you FBN.
Scheduled my surgery today for the end of Sept. Decided on BMX with DIEP recon. Thanks to everyone who shared their stories and helped with my decision.
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FBN, let all of us know how you feel. I really did a ok with taxol, but by then I was so beaten up by my one and only taxotere/carboplatin treatment, that I had no real point to draw from.
Thanks Bren, you are so sweet! I love teaching because you really have to make things real for any of us to understand.
Linda, Special K is so right, these LVEF readings are pretty subjective. But looking back, when I had to take a Herceptin break for six weeks, I was so out of breath and weak. Now, today, I booked my not so boney white ass and got my dog to the kennel right down the street and almost ran back to my house without losing my breath. So keep the faith.
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ladies, anyone of you allergic to sea water after chemo. i finished chemo 8 months ago. Last friday i went to the beach get myself wet from my thights down. i didnt notice or feel itchy until the next morning i had red rashes all over my thights n legs. its about a week now n its getting better. thanks
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odd, soriya, i have been to ventura beach 3 times this summer, and i did notice a red spotty rash on my feet, ankles, and calves the next day, too. and that never happened to me before there either. i go there a lot, and i was wondering if there was just some kinda sand flea outbreak infestation. and then i thought of bed bugs. and then i thought of fukushima water. i didnt even think of chemo changing my body! but i do have a few new allergies, never ever had them before. funny, i didn't blame it on chemo first, thats new! but look at all the other dark places my mind went, i wish it would shut up. and that i DO blame on cancer and its treatments. wish i had more of fbn's positivity. i used to be a blithe spirit, as much as you can in a whacked out world. congratulations on getting your breath back, pbrain!
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thanks Specialk and Pbrain - I figured it was pretty subjective especially when a range was give for the echo on the LVEF. The tech that did the echo was great and he talked to me the entire time about my BC, treatment, and SE's. He also said at the end that I didn't have anything to worry about heart wise based on the echo. I am very tired and do get out of breath after very little exertion but I have blamed that on my low HGB and RBC. I hope to see some improvement in that area gradually. I also have always had very low BP - talking 95/60 so I am sure that is playing a role right now also - my pulse has remained in a normal range throughout treatment so far. I really am not worried about this test and will have another in 3 months. I also was doing alot of walking at the time I had the first MUGA and since treatment #3 I have really become a bump on a log. I know that has an effect and I need the exercise so I am going to try to add my morning walk back into my schedule to see if I can build up my stamina but my muscles just burn when I walk for more than 5 minutes or even stand that long and it is so dang hot!! Did you all take any heart supplements during herceptin to help to keep your heart in good condition?
FBN - hope the taxol treats you better!!
Debiann - glad you made your decision - so now you can just focus ahead. All these decisions are hard.
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Linda, Hate to say it, but I'm kind of glad to hear you're having as much trouble standing and walking as I am. FBN is starting to make me feel like a whimp!
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Lol efcjax - I totally understand that feeling and as much as I hate to say it - I am glad you feel like that too. Sad huh?
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Why do the bad days stretch on endlessly and the good days fly by?
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soriya123
Google "sea lice". It is an allergic reaction to jellyfish larva. Very common in Florida at certain times. Lifeguards usually flag warnings when they're about . Ask the lifeguards if they have seen signs of it
Itches like crazy and for me it kinda hurt too!
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I so hear you Debiann. The week after chemo (this week for me) seems to drag on forever because I feel like crap. Just wish I could taste food that tasted good. And that any food I ate wouldn't kill my stomach. The end is in sight though, two weeks until my last chemo treatment. I'll probably gain 20 pounds when I'm able to eat what I want again. Pizza, Mexican, you name it! For now, Ensure, Gatorade, Soup... Thank God we have each other to understand what we're going through.
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Catching up. Lago, congrats on finding a job you think you will enjoy.
Pbrain, again thanks for your wealth of knowledge. I'm sure that I speak for everyone when I say how much we all appreciate you and your time spent on the boards.
Efcjax, all I can say is scrambled eggs with cheese. Protein, and it was the only thing that didn't taste like crap!
Much love to all
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Thanks GIGIF. I just got back from Labs and Herceptin. My white blood count is "bottomed out" so I have to go on antibiotics and the normal precautions. Also found out I apparently have thrush. First time. They gave me some meds, so maybe that will help my mouth/taste buds.
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hi all
I am soooooo tired! Hard to sleep. Get hot then I'm cold then I'm hot!! Today woke up tired. Forced myself to run some errands now I might just lie down for a bit. I have band practice tonight so need some energy!
I'm also so tired of others telling me what to do or sometimes what they think. Examples;
- there's a cure for cancer you know. The corporations don't share because of the $ involved
- don't eat that. It's bad for you
- don't drink that. It's bad for you
Ugh! I'm eating the burger if I want to or the salami sandwich or the chips. I haven't had soda in weeks so I might have that too. Arrrrrgh!!!!
Okay. It's out of my system now. I think I better go lie down for a bit!
Atleast nfl training camps are open!! FINALLY!!!!!!!
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enjoy the heck outta that soda, FBN!
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will do kathec!!!
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efcjax, so sorry too hear about the mouth issues and the thrush, they have been my worst side effects. I got thrush the first 3 tx, avoided it the 4th. Here's what I did round 4, starting the first day I took the steroids:
- gargled with biotin (did not use the salt/baking soda mixture)
- avoided sugary foods & brushed teeth and tongue after eating. Thrush LOVES sugar.
- Therabreath mouth wetting lozenges during the day, xylimelts long lasting discs (got these from my dentist) for overnight - both of these are made with xylitol. I read some research that suggests xylitol corrects the Ph balance in the mouth, discouraging thrush. They both also have a minty taste that provides temporary relief from the yucky mouth taste and they both help with dry mouth.
- daily probiotic, I like the chewable, can hold them in your mouth for awhile and they help kill the thrush.
- Holding yogurt on your tongue is soothing, got that advice from someone on the forum & it works well.
I still had the bad mouth taste round 4, but not getting thrush was great. My thrush did not respond to the nystatin mouthwash and I had to take diflucan in 3 rounds, MO was worried it was not good for the liver.
Good luck to you! My next tx is Tuesday and I'm dreading it already. I can deal with all the other SE's but the mouth stuff really gets me down and it is so difficult to find food I can tolerate. Even water tastes absolutely awful.
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Thanks Debiann, I'll try some of your suggestions. They put me on the diflucan today. My mom made me some homemade chicken noodles this evening and it was the best thing I've had in days. Wish I could share with you. Good luck to you next week. I hope you avoid thrush this time.
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Thanks for the good wishes efcjax. Yummmm, homemade anything sounds wonderful. On my bad days the DH does the cooking, the closest I get to home made is scrambled eggs, lol.
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kathec if this place sucks leave and still file the grievance. Let them know this is why you left and you will be posting reviews online at healthgrades etc. If they don't take it seriously then they wouldn't take it seriously if you stayed. Right now the competition for patients is high. They don't want to lose any. I know when I was at my BS office and got the orders for someone else's blood test they changed the procedure. The next time the gal not only read the name on the envelope she also opened it and checked the orders had my name on it. Some places do take this stuff very seriously.
BTW I too have LE although not bad and also now have osteoporosis (thanks ESD - estrogen sucking drug). You are not alone.
SusanHG123 went to my 35th high school reunion last weekend. One gal, I've know since we were little kids was treated for breast cancer in 2004 with Adrimycine(she refused Taxotere). She wasn't HER2+. She still has chemo brain and is frustrated by it. She's a writer.
!! I can't get that link to the article to open
yensmiles these are symptoms you must tell your onc about ASAP. Herceptin can challenge your heart but chemo can too. I wasn't tested with a MUGA or echo except before I started treatment… but I was always asked about symptoms. If I had any I would have been tested . At the very least they should test.
Ashla aspirin has been making big news for several years now regarding treating cancer and not getting funding for research because no money in it for the pharm companies that usually fund research.
Football I was taking OTC Zantac per my oncs orders though out chemo. I was a zombie after my first chemo for a week but then my body got used to it.
soriya123 I know my skin was much dryer and sensitive on chemo. Salt water only dries it out more. That could be the issue. I did break out in a spotty rash on my legs just before my last chemo. We never did figure out what caused it but it went away in 4 weeks… to bad my dermo appointment was in 6 weeks. I had to cancel.
I had to skip a few pages but I think I caught up on most of the stuff here.
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