TRIPLE POSITIVE GROUP
Comments
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Shasha--I'm glad u'r feeling better and after the 2nd one u can really judge what u need and what to do--Like most I felt better the day I was etting another one, but I had mine everyweek, I think it's easier on u'r system that way???? And I agree this is not the time to start a new diet u need certain things to help u and again loads of water--i drank and still do vitamin water all day long--low vitamins tho and it's flavored too i can't stand plain water. But this is good so now that's all I drink.
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Jlynn,
Interesting that you're getting herceptin first. It's difficult to say when se's kick in because we're all different. Our bodies handle it so differently. You're getting a different cocktail but for me herceptin gave me very few NOTICEABLE SEs over the course of a year. Constant drippy ,sometimes bloody nose and that didn't start until two months into treatments. I believe my most noticible SES came from the anti nausea steroids . Never had any nausea from chemo. From anesthesia yes but not from chemo. had chemo on Mondays and wednesday night , thursday the SE 's kicked in. First 3 days were okay but I was on a steroid high that made sleep difficult. Constipation was a problem for me. Drink lots of fluids and address any SES before they get past you. Amongst us..we've had all of them.
Boring is good sometimes.0 -
I was working today. I feel like a real person. Wow. Next treatment is March 18th. And will take it one step at a time. If its my diet. Then I have to re think the the vegetarian road. Good luck everyone
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Jlynn...
Found this in my inbox...this one is for you because you seem to be first in this forum to use this therapy combo. Looking good for the heart......
http://www.prweb.com/releases/2013/3/prweb10512437.htm0 -
Well, first day: 8:45-4:15. Long day. I am tired, and feel some slight indigestion, but other than that...nothing. I am the first patient in this group of many women in my oncologist's practice to receive the Perjeta cocktail, so the nurses couldn't really pass along much in terms of "when do you think the se's will kick in"? So, I am waiting for the ball to drop! We will see how I feel first thing in the am, but so far...nothing major but the burn and being tired, which is more from being up all night stressing.
Enjoyed VERY much the heated, reclining seat though!! I also find that I am suddenly fighting a rather voracious appetitie (which is typically not me). Guess the steriods? Oh, to Sasha...nice to hear you were working!! Makes for a much-needed sense of "normal" again!!
Ashla...you're right....Boring in this case = uneventful, and for a first time chemo session, uneventful is a good thing! I didn't want to have to get chemo in the first place, of course, but it went as perfectly as it could have!!
Best wishes to all of you!
Lynn
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I am 3+...had lumpectomy last week...clear margins and no lymph node involvement...yeah!! I start TCH in two weeks. At first I was told I would need a port...now they are saying I don't need one. Pros and Cons????
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rivercottagegal, I would recommend a port. You'll be getting infusions for a year and a port just makes it so much easier. I am so glad I had mine. I watched other poor ladies who didn't have a port getting stuck every week and it was painful to watch.
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I had a port from prior to starting chemo. It is definitely easier for the nurses. Once you have it, it's just a stick. Where I go for tx's, it sometimes takes the nurse a long time to get IV's started on some patients. The drs. push you to get it though.
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I agree I am so glad for the info from my doc to get a port it was hard to get used to at first but in no time it did not bother me. IF I had to do this over again I would get the port put right back in.
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Rivercottage.. I did not have a port, it was never a problem. I do not regret not having had a port. Never had a problem with vein access-no pain at all and I have zero tolerance for pain..
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Rivercottage, No port for me either. Finished carboplatin, taxotere in October, getting herceptin until June. Haven't had any problems whatsoever, and no pain with vein access. Was happy to have the option to not have a port.. some protocols require the port. Also knew I could do the port later if a problem developed.
Good wishes to you.. and to all of you amazing women! Particularly good wishes to all of us today as it is International Women's Day.. and in the realm of amazing women, do we rock, or what?
Trying to catch up on so much here.... found congrats to pbrain, but not what she was being congratulated for. But that's okay.. pbrain, congrats.
Oh, had my exchange and a little lift on the 'normal' breast 3 days ago. Feeling excellent. Painted kitchen cupboards today. Slowly. Not strenuous, but still...yay!
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I was really happy with my port, I would highly recommend one!!!! But then I really hate IV's!! I volunteer at the infusion center now and the nurses really like ports too, some people are really hard sticks. I never regretted getting my port.
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I guess I am a hard stick - especially in my right arm, which is the only arm that can be used now. I don't love the port but after the intravenous vancomycin episodes it's much better than four or five missed attempts to find a vein.
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I had my port for 2 years. It wasn't a power port so when the did scans with dye or surgery they used my foot (10 nodes one side, 4 nodes on the other so I avoid sticks in arms). At the exchange the nurse actually ruined one of my veins… and I have good veins. I'm glad I had it.
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Eileenohio: We could be twins...same tumor location size stage grade and 3+! THANKS to everyone who responded to port/no port. Due to spring break/scheduling I'm going to do first chemo without port then make a decision for future treatments. Fingers crossed/prayers said!
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Lynn I'm glad u got started and now u can see just how u u will be from now on, just remember water and tell u'r Dr. exactly how u feel all the time.
River--It's so personal about the port, but I have seen women without it start out good but after a while for some reason the veins aren't as good and they do have problems getting in. I took the port and never regretted it cuz even after there are blood tests and other things and mine is constantly being used, bit that's just me, I've had mine for years and mine has been used alot. But again it's u'r call--Good Luck
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Mornin Camille...
You never complain. How are you feeling?0 -
Rivercottagal. I have no port and so far so good. My dr said my veins were good. I'm sure the nurses prefer the ports. I just tried acupuncture and it really helped. Strongly recommend it My center has it part of its program. Also. I was fine for 2 days after treatment then it hit. Make sure you have someone around. And my big mistake was not taking the pain killer soon enough. For the neulasta shot. And make sure you drink fluids. Good luck
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I just can't imagine this journey without a port. It's not just the infusions, but the blood draws for other reasons. I am also a needle-phobe. I always use the EMLA cream - sometimes I feel the stick, but most times I do not.
I was also a bag lady. I brought my own pillow, blanket, my laptop, my Kindle, and my own lunch and drinks. For the Herceptin infusions, I usually just bring my laptop or pillow. I never watch TV and most times I slept through a lot of it, especially with the Benadryl/Ativan combination! I really had no interest in drinking, so keeping a variety of different ice teas, waters, juices, seltzers and an occasional soda helped me not get sick of anything. My hubby also kept a container of cubed watermelon in the fridge for me. I used to wake up in the middle of the night and grab a piece or too. It was so comforting.
Bren, I'm so glad your BRCA test was negative. I have two daughters and I was so worried about telling them if it was positive. That still doesn't mean we don't have something heriditary, but it takes one thing off the table.
Ang, congrats on your great news!
Shasha - glad you are feeling better. I really have very little interest in eating meat. I noticed in my bloodwork that my protein was low. Dumb question for anyone, but does this mean I am not eating enough protein? My nurse didn't seem concerned - she seems to be concentrating on certain numbers and protein wasn't one of them.
Lynn, how are you feeling today? Like a science experiment?
I had my one-year follow up this week and damn, they found an area of density on my mammogram. I have to go for a biopsy on Friday. I was hoping for clear sailing. My doctors are all calling it low-suspicion, BI-RADS 4, and say they think it is nothing. He also added that my case has been unusual in every way, and nothing about me is normal. Sigh. On a good note, my ECHO showed an increase in my EF from 54% to 63%, so I am able to stay on the Herceptin. I'm so relieved. Finally, I had the CYP2D6 test to see if I am metabolizing the Tamoxifen. Turns out I am an extensive metabolizer. I know this test is quite contraversial, but it has eased my mind and that's worth something.
Have a great Saturday. We have 20" of new snow to shovel, but I got hit with a bad cold and am staying indoors.
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Good morning Ladies!!
Trying to catch up on the posts. Congrats to those of you who have had positive test results, and may they keep coming for all of you!!
I told my husband today that I woke up and felt "odd". He said, "and how is that different from any other day?" I can't explain it really. Maybe it's the steriods...but I've two more to take tonight, and done. I've been eating like a pig, so I suspect that it's from them.
I have to say though....otherwise, I feel good. So, asking for advice from those with more experience than I, when do the se's kick in? It's only the day after, and I know they're coming. I actually called the Perjeta hotline last night and asked the RN what's up with this? I'm not sick? Maybe they gave me the wrong stuff? She said she had "no information" regarding when the ses would kick in, and then proceeded to rattle off the list of possible ses, which I did have in my lap in my brochure....but I let her read them off to me. Just feel drained and my tummy a little peculiar. Going to have an Activia. Not a yogurt fan but I've been eating a lot of them this past month. I think they help some.
Oh, and to whomever asked re the port....I absolutely hate IVs. I have had a lot of orthopedic surgery in my time, and the second I open my eyes, I start begging the nurses to take out the IV. So, when I was told I needed a port, I didn't sleep more than an hour from the time I was told, until it was put in three days later. Even with an Ambien prescription. That said, when I went for chemo yesterday, with GLOBS of emla and a piece of a Shop-Rite bag cut and pasted eloquently over the top of this white mound of cream (and a lot of orange ink because it ran a bit....I had no saran wrap....so this was my way of improvising....oh, and the nurse said, you can put all you want on there, but it's not going to work any better, and will only make a big mess....she said just cover it lightly and it will do the same thing). Moral of the story is, I was so glad to have the port. I didn't feel a thing. They took out three vials of blood no problem, and off I went to the chemo chair. All of the medication went through there, no problem. I highly recommend it!! But it's a personal choice. Mine falls right under my bra strap (which I didn't like initially as it was sore), but if I didn't show it to you, you'd never know it was there. Gives me the willies if I feel around the area, so I don't.
Anyway.....to those of you who are "chemo warriors" when did your ses kick in? Anyone?
Camille, thank you. Have been drinking a ton of water, did so during chemo like suggested. And whomever said so, is right, you don't complain. How are YOU feeling today?
Enjoy the day ladies!!
Lynn
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Lynn, I had a different protocol but I felt odd, as you said, for the first two days after. It took me a while to differentiate between the premeds, the post meds, and the SEs. I used to wake up with a bright red face from the steroids. My SEs usually kicked in after the steroids wore off. I also found the SEs to be cumulative. Remember there are women who truly do sail through with minimal side effects and I pray that you will be one of them!
Ask your nurse for tegaderm - it's a transparent dressing that is perfect to put over the EMLA cream before you go. I think you can buy it at the pharmacy, but my nurse was happy to give them to me.
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Ashla...
Thank you for posting that link. Nice to know. You worry so much about the ses and to know that it doesn't seem to have an adverse effect on my heart function (which right now, is perfectly fine) is reassuring!!
I read something posted somewhere re a conference coming up in Philly for bc. Lots of speakers talking about what's going on in terms of research. Going to try and go. Probably not DH's idea of a romantic weekend, but at this point, it might look better than nothing!
Lynn
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Mom....
I think you hit the nail on the head there. Between all the "extras" they threw into the chemo cocktail, and the steroids, it is hard to figure out what's causing what. I take two tonight, and then done. Doc gave me anti-nausea meds, but haven't taken any. Said if I don't need, don't bother. Besides, I know it was thrown into the mix before the chemo started.
I am grateful to feel this good, believe me. I have quite a mountain of laundry to start on (three boys in the house who change clothes constantly....one peeve...finding STILL FOLDED items of clothes in the dirty laundry pile....are they kidding? easier to throw it in there than to put it back in their closet). That complaint aside, I'm strangely happy I can do it....so no whining today.
Am taking notice of some annoying indigestion. Think I'll just take an antacid and more yogurt and be done with it. Wanting to see a movie tonight, but can't find anything that catches my eye! Want a comedy, something light, nothing sad.
Enjoy your day!! Oh, and the Tegaderm. That's a good idea. I know what it is, I've used it before. But, I will do what you suggest and ask the nurse for it...it is VERY expensive (if I recall correctly) and right now, it's wise to be humble, and just ask. Bills are UNREAL so far, and my journey has just begun.
Lynn
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Lynn, I know what you mean about feeling odd. Its not pain, but somehow, I didn't feel like me for a few days after each chemo. About the indigestion, I took prilosec for most of chemo. It took away most of the sour stomach feeling. Even though the box says "don't take for more than 2 weeks," my MO said it was ok to be on for months. You also might want to add acidophyillis (Spelling??) tablets to aid in digestion. Obviously, check with your MO before you try this.
For the first few treatments, my SEs started on Sat, when my chemo was on Weds. Nothing too terrible. For the latter treatments, the SEs kicked in earlier. From what I've read, Perjeta isn't supposed to have bad SEs. Its like herceptin, which isn't bad at all. Please keep us all posted!
I like your improvisation with the shop rite bag! Sorry it bled yellow dye! Saran wrap works perfectly (and is way less expensive than techaderm!!)
Rivercottage, How often will you be getting herceptin? I got it weekly, for 18 weeks, and then transitioned to the dose dense 3 week protocol. If you are getting weekly infusions, I highly recommend the port! If you are only getting herceptin every 3 weeks (as part of the TCH cocktail), then it may not be so necessary.
Good luck!
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Thanks cg....see we are neighbors. I am in Mercer County area. I have heard of acidophillus (I don't know how to spell it either). I think it's supposed to work well too, so may set out to find. Other than that, I'm feeling kinda spacey, aka "odd", but ok. I keep getting this random thought that maybe I'll luck out and keep my hair too, but I won't let myself get caught up in that false hope. What is to be, will be. Besides, I used to spend a ton of time on my long hair, and have found this short cut to be much easier, and I like it!! My long hair days could be gone. Rather be out doing something fun than playing with my hair for an hour!
I kinda feel like I am one of the only Stage IV's on this board. Is that right? I seem to fit in the +++ category, but suspect that's all. However, I find that I like this board the best, so I hope that's ok. Just curious.
Lynn
Who is wondering about this Oz movie. Anyone see it? Looks kinda neat?
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Lynn I had terrible digestion issues (heartburn, gerd). Prilosuc never works for me. They had me on Protonics through out chemo and at the end I my onc added Carafate. I also take a probiotic enhancer: nutraflora as well as ate yogurt. Long term use of drugs like Prilosuc or Protonics can have an effect on your bone density. That's why they don't want you on it long term. Also, more than 2 weeks on an OTC drug means you have an issue that should be monitored by a doctor. That's why these labels always say that.
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lago...
ty for posting link. I looked at it...what did you find best to mix with? Did it go down easy? May give it a whirl!! May just be ok mixed in with some yogurt? You seem to have done your homework and have a lot of good advice/info to share, which I appreciate, and am sure many others do too! I have been online searching and reading til my eyes hurt, but want to learn as much as I can.
Lynn
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Good morning to all you lovely ladies!
Bren58, so glad for you that the BRCA gene test came back negative
;Jlynn0807, my SEs, for the first 3 of 6 chemo sessions were minimal, and they usually kicked in about 3 days after receiving chemo. Are you getting Neulasta, too? I ask because you receive it 24 hours after your chemo session, and I found the SEs from Neulasta to be unpleasant, i.e., bone pain in ribs, esp. It kicked in two days after receiving the shot. The steroids do make you energetic and hungry. I was aware that the drug was playing tricks with my mind, so I kept a food journal, rather than succumb to the message my brain was sending me, 'Feed me, feed me." Call me vain, but on top of everything else, I did not want to become chubby
. FWIW, my house was never so spotless, as I was the Energizer Bunny due to the steroids.Rivercottage, re: to get or not to get a PORT, I had a port inserted, and I used it for chemo sessions 2-6, but it had to be removed because the incision never healed (i.e., never knit together properly). There was a reason for that: the PORT did not have an air-tight seal, so every time I had chemo, some leaked out, corroding the skin in that area. My understanding is that chemo is quite hard on the venous system whereas Herceptin, not so much. I am 50, fit, and the docs tell me I have "great veins," whatever that means. I receive Herceptin every three weeks, and I have had no vein-related issues. I am not scared of needles and have a high pain tolerance, points for you to consider.
Vballmom, here's hoping that dense area of tissue that showed up on the mammogram is nothing significant.
Shasha, glad you are feeling much better.
Finally, re: digestive issues, honestly, I had none, but I was taking a probiotic and also drinking Keifer, as I assumed the chemo/steroids/Neulasta, etc., were probably destroying the balance of good/versus bad bacteria in my gut. Keifer is an acquired taste, but I think it did help me.
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Gratitude....smiled re the chubby comment. NOT on my list of things to do either!! I am thin, and have battled the bulge most of my adult life to get here. Used to be around 225, so I've been on both sides of the fence. Started a downward spiral after my divorce 12 years back. Twenty here, ten there. Now, 135 at 5'8. Probably gained some this past week, but I don't care. Long as I can get my clothes on, a few pounds right now, is ok. During chemo yesterday, I ate a special K granola bar (pretty good too..choc pretzel something or another...90 calories, two bites and it's gone...I easily could have eaten the whole box). Then, I moved on to Triscuits....ate a half a box. Then, my DH went to DD, and lovingly returned with a cinnamon raisin bagel, delicious! So since I'd asked for a burger from the golden arches, I figured I was doing myself a huge favor with the bagel instead! Then, I'm home. On couch, exhausted. I ate two yogurts, with granola added. More Triscuits...and a few jelly beans (the "good for you" ones lol) My brain is getting fuzzy, so I mighta eaten something else, just not sure what. Today, not so hungry due to indigestion, but am going to make a smoothie. I have found the Doles to be very good, no blender. Just chop up the "stuff" on the bottom, and shake. No fuss. Perfect. Peach mango very good. They tend to run a bit pricey, so when they go on sale, I stock up! I guess I'm doing alright, not eating total junk, but I am fighting it. Keep saying it's "All in your head".
Trying to get the chores down around here before my husband gets home and yells at me to relax, and I cannot seem to focus.
Oh, and as for the Neulasta, it was suggested by the nurse I come in today. Then, my onc said Perjeta causes different ses than some other chemos, so let's just get your blood mid-week. If you need it, then we will give it to you. I was fine with that. I trust him, implicitly. I will stay with him as long as I can afford him! I did meet a woman who treated with my group, and said after a while, she had to "break up with him". Said it was awful. I understood. She is going to another place, where they actually pick you up and bring you back and forth for treatment, for free. That's a huge help given gas prices and wear and tear on your car. Have to be within a 30 mile radius of their facility, which is rather generous. I have heard the ses from Neulasta are worse than chemo, so I was ok to wait.
Lynn
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Lynn I would mix it in my yogurt or put in my water. It's tasteless. My gastroentinologist told me about nutraflora when I was having gerd and IBS issues back in 2007. Still have IBS but manageable. Still do the nutraflora too.
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