TRIPLE POSITIVE GROUP
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PBrain - definitely ask for Emend - that seems to be what you are lacking. I didn't know anything about Zofran so I just looked it up - it's the same as onadestron. Interesing that they didn't get you to take the dex the day of tx but gave it to you through IV. I'm sorry you are going through this, hoping next time will be better.
Sue
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Is it appropriate to post this here? I have a column open in tweetdeck for the word HERCEPTIN - also a column for HER2 (and a bunch of other stuff, like neutrinos, cosmic rays, etc. - I love tweetdeck for Twitter) - ANYWAY - just saw this and though I'd post the link:
Herceptin May Carry Higher Heart Risks for Women Than Thought
snippet: Now, a new study that focused on women aged 67 and older has found that the risk may be higher than believed. The report is published online Nov. 14 in the Journal of the American College of Cardiology.
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PBrain - I was sent home with Compazine for nausea but it caused dizziness so I switched to Zofran. Just be cautious too that Zofran carries a warning for headaches. Definitely take something for nausea proactively, my MO said if you get ahead of it it's much more manageable. I never got nausea but had GERD bad. I also had the Big C that day after tx, Miralax did the trick for me. Drink, drink, drink! I used lemon in my water, also ginger ale was ok and my favorite was milkshakes. I had the tastebud cruds for about 8 days each treatment, everything tasted like it had been soaked in battery acid! I think keeping something in your stomach at all times should help with the sore belly too, small snacks every couple hours or so. Applesauce, bananas, rice pudding, bland stuff if you have to. Hopefully the next one treats you better!
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Interesting article LeeA. Good info for me since I will be on Herceptin indefinitely! I'm glad to be much younger than the study age but will made sure my MO stays on top of echos for me. Developing heart problems has been a fear of mine but so far after almost a year of chemo and now Herceptin alone my EF has remained stable after initial chemo.
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PBrain, in case you're interested at some point in the future (probably not now!!) - apparently some Russian scientists are exploring the science of "heliobiology."
Solar and Geomagnetic Activities and Related Effects on the Human physiological and Cardio-Health State:
The geospace is very sensitive to solar and geomagnetic activity, to changes in these activities and its manifestations in the near-Earth space environment and on the Earth. The Sun, as the origin of visible and invisible influence, poses a health and safety threat to humans and all kinds of human activities. This paper describes recently obtained results of cross-disciplinary heliobiological studies carried out by Azerbaijani research group in collaboration with colleagues from different countries with purposes of revealing possible effects of solar, geomagnetic and cosmic ray variability on the human physiological and cardiovascular health state in middle latitudes. General conclusions, based on the results of these original researches, are outlined. Effects of severe and weak geomagnetic disturbances, latitudinal effects, and impacts of solar extreme events are briefly provided.
Keywords. solar activity, solar-terrestrial relations, space weather, heliobiology
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I'm intrigued by the vitamin D studies, the 37th parallel/latitude and multiple sclerosis, etc.
The sun is our friend/the sun is our enemy. There seems to be a constant tug-of-war.
Glad you're feeling better today! As a researcher, I'm sure you'll get it all figured out as to what works and what doesn't work for your TTC (treatments to come).
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Kelloggs, that's great news re: your EF remaining stable! I'm kind of nervous about the heart issues as well - I'm 54 and have MVP but I sure don't want to pass on Herceptin because of that.
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Hi everyone, I do not have a diagnosis but my mom does. She just had her a appt today as a follow up after her lumpectomy. She was originally a stage 2 with only one known node infected to now they learned 7 out of 13. She is 69 and very good health. My concern and main questions would be surrounding the chemo. She is due to start the 30th. She is off work with FMLA but plans to return. I keep telling her retiring would be beneficial. She works full time as an STNA in a nursing home with alzheimers/dementia patients. There is no such thing as light duty work...Im concerned her immune system will be non existant..Im trying to keep strong for her, but its so hard.. I just lost a good friend from high school 7 months ago to stage 4 breast cancer. she was only 29, to find out my best friend (mom) is going thru the same thing..Sorry if this is upsetting, i just dont know how to handle this information..happening fast! thanks
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Kelloggs- thanks, I'm hoping it goes was soon. I don't want to cover it with make up and make it worse. So, I will leave it alone and smile in all my bald head, acne glory! Cheese!
Pbrain- 3 day IV Emmend given day of chemo as Pre med; Phenerghan and Ativan. Just saying, it works like a charm for me. Zofran, I honestly believe that may have been cause of headache first treatment. And be easy on yourself. If you are able to take a week or so off after chemo, roll with it. It gives your body time to recoup, and keeps you stronger to stay on schedule. (((Hugs)))0 -
crlamb - I would let your mom decide about the retirement. Alot of women sail through chemo with no problems at all. If she gets the Neulasta or Neupogen it will help her immune system stay stable. I work in a pulmonary practice and continued to work all through chemo even though the pneumonia and flu were running rampant! Going to work was a welcome distraction for me and on the days I didn't feel like going my employer was very accomodating. If she decides to continue working, support her! Good luck to you and your mom!
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hello PBrain, sorry you feel so bad ....I do not write to much by here , but I read a lot and I love all these ladies...
I did AC/TH and during AC I have received emend and prochlorperazine which helped me a lot with nausea. 5 mg every 4h in day 1, every 6h day 2, 3 and after how you need. maybe the first week I needed 1 at bedtime, just to be sure I sleep well. I didn't loose any weight, I took 4kg at each ACtreatment ( eating a lot )I have 12 kg at finish
good luck
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crlamb2003 - Welcome...to echo what so many others have said when someone new shows up: I'm sorry you find yourself here but if your mom is triple positive (and even if she isn't) this is a great thread for you (and/or her) to follow. I haven't been here that long but there's a wealth of information to be found in these 400+ pages.
I'm sorry about the loss of your high school friend - and now you're hit with it again and even closer to home. This disease sucks.
One thing is for certain: your mom is blessed to have you looking out for her as an advocate, a daughter and a friend.
I would be concerned as well regarding her work in what sounds like a fast-paced, stressful environment. Perhaps she will eventually reconsider. On the other hand, she may feel like her good health (other than this cancer diagnosis) is due in part to staying so active in her job...
It's good to hear that she's in such good physical shape. That should definitely work in her favor!
I've just had surgery and haven't started chemo yet but so many here not only know the ropes but have kept copious notes about the ropes so that us newbies will have a better grasp of these scary, new ropes.
This is truly a great group of people - not just on this thread but throughout the BCO community.
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I have been skimming thru and have found some helpful info, thanks.. I feel like im playing the mother role. I know if the tables were turned she would be giving me orders. I understand her need for work and I know it would probably drive her crazy to retire but the immunity is my biggest concern especially coming into flu season. She is a health nut and drinks this tea called Essiac tea, she believed in Faith and tea haha that she was going to be cured. She waited 2 months to schedule the surgery. The dr said that she was a stage 2 prior, but now says she was probabaly stage 3 they really had no way of knowing she had that many nodes. Since its the fast spreading, what do they mean fast spreading. I ask questions and write stuff down but it can be over whelming. Now since she moved up on the scale she has a 50% of it spreading somewhere else...Im so worried that their missing something or will miss something.. My friend found out she had it about a yr ago and it was already a stage 4. Hers was genetics and her younger sister had the testing done and underwent a mastecomy. Its just amazing how sick you can be without knowing...
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Jen404 - glad you got the drains out! I remember hating mine and calling them "grenades". No idea why, just the shape I guess.
Dechi - so nice to find some else who stumps the Dr's.
PBrain- glad you get to stay home and rest.
Moonflwr - you will look fabulous in no time!
I made a call today to the original hopsital from 2000 and they still have the slides, they are just off site. I will take the release paper to the MO's office tomorrow and they can request the slides and hopefully do the HER2 test. I think that will answer a lot of the questions.
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crlamb - I know this is difficult for you and your mom is lucky you are so supportive. Please remember that there are alot of women with stage IV who live many, many years. There are threads on this site with women living with stage IV for over 20 years. I am stage IV from the get go and plan on being one of the 30 year survivors. Yes, it is a serious matter, but it's not necessarily a death sentence. Keep your chin up!
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Holy carp, I should not admit this to you guys but I had a thought a few hours ago. I finally found something to calm my stomach. Rumpleminze peppermint schnapps! I had some deep in the back of my pantry. ahhhh, feeling better.
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Pbrain- really!? Lol! Okay, but please be careful, with the meds and also because your liver and kidneys are already taking a hit with the chemo. Okay, done playing the mean nurse roll.
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Thanks Ms. Tori, you keep playing that role. I just feel so much better, I think I even want some crackers. Man does this chemo suck!
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Re: Peppermint Schnapps - you and Millie both!
I just googled Peppermint Schnapps and stomach ache (I had no idea) and found this:
Other things the kids recalled about their mom (Millie) was her love of cardinals, that she was proud she shared the same date of birth as Shirley Temple and that when someone had a stomach ache, her remedy was a shot of peppermint schnapps.
I also found mention by a "Super Pooper" (yes, I typed that right) on a Crohn's board who recommended the same thing: peppermint schnapps!
Amazing information here!
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Bren58 - I'm glad you were able to track down the year 2000 slides!
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@ Kelloggs.. Thanks! Im still learning the ropes, and unfortunatly thats the first thing that comes to mind..Stage 2 was bad, but then they upped it and I just felt my stomach go in knots. I dont want to sound so pathetic on here when I know there are many more in worse situations. Just rough...Your from Canton? My mom sees Dr Trehan at Aultman...we were just there today..
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thanks so much for all the support ladies!
i spent the wee hours of last night going through the "continued tissue expander pain" thread and did see many women who were extremely uncomfortable for quite some time before things loosened up (6wks for some). I am going to give it until the 6 wk mark and then decide what to do. I don't want to throw in the towel just yet but i am pretty miserable still. I just want to get my life back...I know I am echoing what all the ladies in chemo are feeling right now. Its just so depressing because i thought i was done the hard part, this was supposed to be the easier (not easy) part (sadly mistaken).
kellogs - congrats on NED! that is amazing!
ms tori i cannot even imagine surgery and then jumping into chemo with all the complications i've had so my heart goes out to you. I hope your discomfort gets better
i can't believe the local reccurances after 10, 12 yrs - I thought this sucker was fast growing?????? there is so much they just don't understand about this disease
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LeeA,
That article pretty much backs up the latest one...except the stats are a little higher.
"Put in other terms, for every 100 patients, 32 of those on Herceptin and 42 of those on Herceptin and anthracycline had developed cardiac problems by the three-year mark,"
Yikes.
But that really is reflected in my real life experience. The women I know who have taken it, and have problems, or don't.
I think in five years that number will jump for all age groups to 40%, maybe higher.
Still.
I would take those odds!
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Right now I'm just going to look at Herceptin as my life saver that causes brutal-smelling farts ;-)
Haven't had any of those yet though. Tee hee!
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TonLee and PBrain - I'm with you both (re: Herceptin)...
Now, why do I have that sing/song voice of Honey Boo Boo child in my head? "my special juice is gonna help me wi-i-in."
(I've never watched the show but I have seen the video and it has become one of our household memes)
Moonflwr - I'm spreading your very helpful drain tube stripping instructions around and attributing them to you! The day you posted them for Jen404 I emailed them to my husband and just now I posted them over on the November surgeries thread.
Now, EVERY.SINGLE.TIME my husband does drain duty he has to do the drain-stripping thing... (tip: never give a first-born, mensa member, managerial type too many helpful hints!)
And I don't know what it is about standing there waiting for him to do all that drain stripping and chart keeping that gives me gas but it does! Ha ha. Maybe it's a passive/aggressive thing! Of course, I do the ladylike thing and hobble away...
I told him the Herceptin/Walmart story last night.
A brand new world we've ventured into...
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Those herceptin heart stats are becoming more convincing . Very important for all of us to insist on longterm cardio follow ups in light of these findings.
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OmG everyone hurts so bad I'm so sorry==This can be super rough.
And crlamb I'm sorry u'r here, but u'r a wonderful dgtr and there is a wealth of info on these boards.
Lee I really liked the Herceptin numbers. since I am over 67 and now seeing a cardiologist after having 1 yr of herceptin. Another cheer me up. LOL
And zmoon I have to say when anyone says u look so good, I want to puke--I know what I look like really and it ain't purdy. My eyes are so bad that u can go on a trip and use them as u'r baggage--not sleeping well is mostly the culprit and I'm laughing cuz one mf my new meds says may casue dizzyness--ahem they all cause dizziness---so does that mean more dizzy than I am noe LOL
And zi'm deciding to wait til after Christmas to have my new lump scsnned cuz I won't think about it and I'l have a nice Christmas-it's not going anywhere.
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camillegal - re: Christmas and your lump -
We went on vacation before I knew what my lump was. My general practitioner said "how could you even consider going on vacation?" Well, I not only considered it but we went and for better or worse, I made my choice but you know what? I enjoyed every single second of it. I sat on the beach and dug out Niihau shells with tweezers (like the OCD nutjob I am) and watched people (including my husband) swim with sea turtles and thought "I'll deal with this when I get back." Everything looks even more beautiful when you look at it knowing it might be a while before you get back again...
And smiling once again at your sense of humor: "eyes are so bad that u can go on a trip and use them as u'r baggage"
p.s. I'm sorry about the herceptin article...I debated about posting it but they, whoever, they are, keep saying knowledge is power. Or something...
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crlamb some women do really well through chemo and working really helps them stay strong. Make sure she discusses this with her onc. I know many of us got nuelasta and it helped keep our white counts up. Your mom may not be able to work every day and have to take a few days each cycle but if she's up to it, it's possible its the best for her. I know one gal in her late 60's that did finally take leave for the last few TX but has not retired. Actually she did the 3 mile Strides Against Breast Cancer walk with us just 3 weeks PFC (post final chemo). Some of these older babes are hard to keep down.
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pbrain - they gave me Emend and Aloxi via drip (as well as Benadryl and dex - 20 mg) on chemo day. also 16 mg by mouth day before chemo and day post chemo. I had Zofran to take at home as needed. I never vomited. I had mild nausea but that was all related to GERD. I am stunned you received nothing in your IV for antiemesis. I highly recommend you request both Emend and Aloxi in the drip (or something similar). They work via different pathways to limit nausea sensation/vomiting. And then have something at home for nausea as needed.
For reflux, I tried 3 different PPI's before I finally was allowed by my insurance company to get Nexium. That helped more than the others, but I still had breakthrough symptoms even taking the double dose of 40 mg twice a day (I have pre-exisiting reflux, so I was set up for extra severe reflux). I was told to also take Carafate (4x daily) which helped -again, not enough, so was told to add in Pepcid (2x daily)...not enough...told to take Maalox PRN...helped some for temporary relief...and then given a specialty "green cocktail" by the gastroenterologist which I took every 2 hours to get through the night. Yep...5 meds all together to help me tolerate the ridiculous reflux I had...this is the rare situation for reflux - but hey at least now you know the gamut of what you can take and most people only need 1 med to keep it contained. So you have lots of stuff to try if this is still an issue for you!
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