TRIPLE POSITIVE GROUP
Comments
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Oh! And Pbrain- I'm beyond words at this point. If anyone walked into our place, hello, it looks like we could create dust bunnies as decorations for our Christmas tree! It's called chemo! We do the best we can. But when you can barely drag your butt into the shower or put food in the belly, really? There is no concern for housekeeping. Shame on them. See, even have me going off in my nauseous nasty state! Humph!
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kayb--sorry you are having the ups and downs right now. If it makes you feel better, I cuss at other drivers already and I have no excuse since I haven't started Tamoxifen yet!
For real, I never cuss but put me behind the wheel at rush hour and it's Dr. Jekyll/Mr. Hyde.fluffqueen--awesome idea on cancer showers! And let us know how your US goes Tues. Prayers that it's nothing to worry about.
LeeA--does walking around stores and parking lots for Black Friday shopping count as good enough exercise?? I did that yesterday
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Waitingforthenextstep - I did TCH and my Herceptin was always at 3 week intervals, throughout the entire treatment.
I also had a lot of SE and it was suggested I switch to once per week, as it might have lowered the SE (smaller dosage). I didn't switch over, mind you, simply because of the drive time. I've heard of others doing Herceptin once a week for management of SE. Hope this helps!
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PBrain, I was telling my husband about your situation last night and he said "she needs to talk to HR."
I'm so glad you're going to do that...
It's like this is the weird/unsavory situation that keeps on giving!
Oh, one other thing my husband said: "she might want to consider getting the locks changed..."
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Steiner18, I sure hope it does (count as exercise). Yesterday (BF) we went to three hardware stores, three grocery stores, a beauty supply store, a drugstore and then finally, out to dinner and I am worn out today.
I am kind of frustrated because my energy level seemed greater a week ago than it does now and my pain doesn't seem to be changing. It's not terrible pain but I'm not seeing an upward curve right now. I'm wondering if some nerves are waking up again or something. PLUS, these drains. I'm pretty certain things will feel continue to feel "stagnant" (in terms of improvement) as long as I have these two drains in place.
I can't believe how soon you were able to have yours removed. All I can say is, I must be one full-of-liquid person...
Also, I like your new avatar!
Editing to add: do you still have pain?
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Just checking in, everyone. I am always reading your posts but hardly ever post myself because I read from my phone most of the time, which is so hard to post from.
Anyway, I finished my 12 weeks of Herceptin/Taxol last Monday. Woohoo!! Starting FEC + Herceptin this coming Monday. I am really nervous. Worried about side effects. I didn't do very well on the TH, especially when I was on the Tykerb. And from what I hear, the FEC will be worse. At least it's only once every 3 weeks. Anybody here do FEC?
My oncologist is in STL, 2 hours from my house. I travel there for my chemo. I am worried something will happen and I will be so far away from him. I am worried about my blood counts dropping and not knowing it. I asked about Neulastin shots and he said he never had anybody on the FEC need them. Maybe counts aren't affected as bad as with AC??
I am usually not nervous about my chemo, my cancer, etc, but I am worried I will be completely out of commission. With 5 kids under 10, that is catastrophic!! Well, thanks for letting me vent. I tell my husband, my sister, and my mom my worries all the time but NO ONE can really know how I feel except you ladies. I am so thankful for you.0 -
LeeA - activity is often tied to drain output - the more you do the more you drain. If you want to lose the drains you might want to slow down!
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Sol - teenagers, not so fun, the little guys can be a real kick sometimes though.
Not sure who asked about frequencty, but I was on Taxotere, Carboplatin and Herceptin. I received TCH 6 times 3 weeks apart, on the weeks in between I received Herceptin, so I received 18 weeks of weekly treatment, then starting 3 weeks after my last chemo, I received Herceptin only every three weeks for the balance of the year, I think it was 18 treatments. The weekly herceptin was given over 1/2 hour, but when I went to every three weeks it took 90 minutes because they were giving me three times the dosage. Hope that makes sense.
LeeA, I ended up with my drains longer than normal I guess, 1 came out at about 3 1/2 weeks and the other at about 5. It was still draining a lot, but the BS wanted it out, I had to wear a pad to soak it up for a while longer. It finally healed, but I still have a little jello-y spot where the drain was that fills with lymph fluid, when I get truncal swelling it gets bigger, with the punch biopsy it really filled up. My LE therapist is showing me how to redirect it so that it learns to drain toward the inguinal nodes.
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SpecialK - that's almost word for word what the BS surgeon said...
I had asked if I was "at the bottom of the class" (re: drains) and he said the patients who feel the best often have them in the longest because they do too much but I haven't felt like doing as much the last few days.
But also, I just turned 54 so maybe age has something to do with it as well (fluid output). Steiner18 (IIRC) got hers out at one week - but conversely, I'm old enough to be Steiner18's mom...
LindaK, wow, that sounds really involved...especially the little Jello-type area. I guess that's what's coming out of these drains, right? Lymphatic fluid? I look at that stuff and wonder how many cancer cells are floating around in it...
I used to do lymphatic brushing way back when. Maybe I should try that again (when things are more healed). Also, I'm set up for a lymphedema physical therapy appointment but so far, I don't think I have any signs of it but it may be too soon to tell. It's all such a new and mind-boggling mystery.
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LeeA - SpecialK beat me to it! The more you move, the more fluid. Sounds like you need a couple days of rest anyway -- where do you get the energy to do all that running around?! Good luck with getting those drains out soon. One day after I got my last one out after the bmx, I had another one put in because of the "cleanup" surgery; I was not a very happy person.
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Lee - that was the other thing I was going to say my BS said I was doing too much also. I felt good, so I didn't think I was doing too much, but I did cut back for a bit and my drainage did decrease a little before I got the drains out.
My LE therpaist says that LE brushing can be helpful, you just have to make sure you do it correctly, or it can cause more problems. Is your therapist a certified LE therapist - you can find out by doing a google search. There are two certifications that I know of in the US - either LANA or NLN.
I think that all of us should have an initial visit and eval done by a LE therapist, I learned so much that it would have been worth it even if I hadn't been showing any signs of LE.
Oh, and Lee I keep meaning to reply to your PM from back a bit, but...... things have been a little nutty. And I was 54 at diagnosis and am 57 now.
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Nicky: I am on the same protocol as you! But you seem to be one step ahead of me. I am getting my 12th Taxol and Herceptin this coming Monday. I start FEC and Herceptin Dec. 3. I am very nervous about it because my oncologist said that we would have to see if the anti-nausea meds would work for me. I haven't had any major SE's from the Taxol or Herceptin so I feel like I'm going into unchartered territory with the FEC.
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Linda, did you find that you felt any differently after your triple dose of herceptin (doing it once every 3 weeks) than you did when you got it weekly?
I'm finding that I get extremely tired after the herceptin, if the infusion is run at normal rates. The first time I got herceptin only, they ran it over half an hour, and I felt like somebody put a sleeping potion into my veins. I got home and literally couldn't lift my head from my pillow for several hours. I then posted on this blog, and was told that my reaction could be related to the speed of the infusion. At my next herception only infusion, I asked to have it run "glacially slow" so now they run the weekly dose over an hour, and then I can function afterwards. I'm concerned that when it goes to triple dose, I will be knocked out afterwards. I wonder....will the triple dose take 3 hours???
I also ask that a bag of hydration be run at the same time, which lessens my fatigue also.
Any suggestions for when I reach the herceptin only point....hopefully in 7 weeks!!
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Lee...how do you take oil of oregano? I bought some with the intention of using it. When I tried it, it was the worst tasting stuff I had ever used.
Cgesq....I had weekly herceptin with taxol. Herceptin went fairly quickly. Then I went to every three weeks dose dense. The first couple of times I got it in 30 minutes. I told my onc I felt worse than I ever did on the chemo combination. So, he said we could do it over a longer period of time, so we did 90 minutes and it helped a lot. He also said I could continue to get it every week if it would help or every two weeks. The 90 minutes was good enough. I was pretty tired for a couple days after, but at least I felt better.
I was just looking at the San Antonio breast cancer symposium site. It starts December 4. Lots of presentations on her2 positive cancers, it appears. It seems to be leading the number of presentations.0 -
cqesq - I would be really tired after my weekly herceptin and I always got a headache on the second day after my infusion that lasted for 2 or 3 days. I would get it in a half hour, one time they messed up and had me get in 90 minutes instead, and I didn't have the headache, and wasn't as tired.
Once I was done and went to every three weeks with it, they always did it over 90 minutes, I still got the headaches, but they started giving me bendryl and prevacid, and more fluids with it, I didn't get both of the pre-meds when I got it on my chemo off weeks. I was always tired, but not as tired as early in treatment. Now I notice they give the ladies tylenol before treatment too.
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I'm way behind so I hope my responses aren't too late. I might be a bit short but hopefully I can get to everyone. I'm scanning so I'm sure I'll miss a lot of stuff:
Kimbythesea don't look back. None of us really know for sure if we did the right thing. Even if you did the treatment there was still a chance it might not work or you might not have needed it but then got permanent SE. Just move forward and forgetaboutit. Don't worry about maybe, only worry about stuff that is really happening.
Pbrain: http://www.cleaningforcancer.org/ or http://www.cleaningforareason.org/ and
ACS number: 800-227-2345
No need to bring these cleaning big mouthed police into your home anymore. Also, Each time after one of these organizations clean your house take a picture with that day's news paper and send it to your frenemy. BTW I think this cleaing thing is the issue/relationship ender during cancer. My sister was cleaning when she went off on me and I kicked her out.Jennt28 it eventually gets better. Feel free to bitch and moan. We all did. Cancer is such a time suck and then there is suck a long recovery.
Rozem I hear ya. Hang in there.
HER2+ tumors if under a certain size don't always get Herceptin or chemo. I think it's under .5cm but not sure.
Hi cgesq Hope your rash is gone now. Be sure to mention it to your onc.
Kayb I was just saying what ashla said to a friend of mine going through a nasty divorce… that I learned in my early 20s that you can be lonelier in a bad relationship that you can being single.
ConnieGreene to be triple positive means they have a bunch of shit they can use to treat you: chemo, herceptin and hormone treatment. You might need all you might need only some. Also radiation might also be a possibility. Your feelings about "will I still be here" are normal. Your onc should give you statistics on how treatment can improve your odds. Most of us do very well and never have to deal with this breast cancer shit again. You are early stage so you have a good chance of being around for quite some time.
nickythebean Have you been to the Illinois Ladies thread yet? Where in IL are you?
sorry if I missed anyone. I'm now going to bed
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Fluffqueen, it does take some getting used to (Oil of Oregano). I just drop 3 or 4 drops under my tongue and try to forget about the taste. I grew up being the world's worst picky eater so I can't believe I can actually do it but it typically works so well that it's worth it. They also sell it in little capsules and I always keep some of those on hand as well; however, I figure the actual oil on the throat is important in killing off germs, bacteria, viruses, etc.
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LindaKR, I assume the technician is licensed. She's part of the Roy and Patricia Disney Cancer Center.
I just looked up the directions for dry-brushing again (it's been so long). In case anyone else is interested:
http://www.livestrong.com/article/172135-how-to-correctly-dry-brush-your-body/
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powermom, oh boy - that would just be quite the irritation - to finally get them out and have them back again within a day or two (or week or two). If I end up having to have an ALND I'll be in the same boat as you were...
I had more energy the first week and a half. It seems I've hit a wall since about Wednesday or Thursday. Some of that might be psychological because I found out about the possible LVI on Tuesday.
I see you're up for your first chemo coming up on Monday. I'll be thinking about you...
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Nicky: also forgot to mention that I, too, have to drive 2 hours there and back to each chemo appointment. My husband stays home with the kids (they're 7, 4 and 18 months) on my chemo days. I have a very, very good friend who organized all the driving. She created an online sign up sheet and it filled up right away. Only one person was allowed to take me at a time. At first I felt like I was the hostess at a party and while sitting in the chemo chair with an iv stuck in my arm I would ask if my driving-mate was ok, did she or he have everything they needed? Now? Well, now I let them know things like, "Here comes the benadryl. OK, I won't be talking to you for an hour or so! Bye bye!". When the FEC starts I am worried about that long trip home because of nausea. Well that and, like you said, the lowered counts- if I can't have chemo that day what do I do? Stay overnight? But then my ride probably won't be able to. So how do I get home? But I am looking forward one treatment every three weeks...glad the weekly ones are finishing the up before bad driving weather!!
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nicky and forever i can't believe how fast cancer treatment changes...i was told they did not do H with FEC and now they are doing it, i think that is amazing! so here is my experience with FEC - I was very nauseas, sorry hate to be the bearer of bad news but I was. I was not nauseas at all on the taxotere portion of chemo. They do give you a lot of meds to help with that tho. My nausea started about 2-3 hrs AFTER infusion so you may be able to make it home before it kicks in. But honestly, I think you both should arrange for someone to drive. You may react differently but i was told nausea was very common with FEC. The good news is that there is very little to no joint pain like there is on taxol. I did have neulasta after each chemo but it seems like even that is controversial. Good luck and you are almost there!
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Went to see my onc, actually another Onc because my own Onc only saw patients in the afternoon that day. The US did not show any thing gross abnormal. Glad to know that, although I will watch out for that scar area. Thanks for all of your good wishes!
Asked a copy of my last blood results with hormone results. It turned out that my estradio- 17 beta level was less than 70 pmol/L on April 21 2012, with normal range being 110-2000, now is 461. FSH (Fillitropin) now decreased from 45 on April 21, 2012 to 33 now (normal range is 1-35). So it seems my hormone levels has become normal for my age (40) and I also felt I will have period soon. So this might be the time to have ooph, which is part of the total hys anyway. My Gyn said my level wont change when I saw him after April results, now it did change! I still have hot flashes though so a little confused. Hope no period before the surgery date of Dec 3rd. Keep my finger crossed.
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Nicky and Forever--
I did your same chemo protocol.
FEC kicked my ass. I have to be honest. I was on so many premeds/nausea medications that it became a joke. The first of the 4 was the worst for me, though, and after that my MO was able to medicate me enough to manage it. But like RozeM, mine started within hours of getting home from my infusion. I felt like my head was full of rocks. My husband made me an icecream smoothie to keep by my bed and I literally took Vicodin and just tried to sleep for the next 3 days. I never vomited, but I felt like absolute crap.
I will never forget the last Taxol I had, I asked my nurse how bad FEC would be. She said, do you want me to be honest? I said yes! She said "it is going to kick your ass". and it did. But guess what? I had PCR at my mastectomy so I'm glad it did what it was supposed to do.
And I did have Herceptin with my FEC.
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PCR by the time of mastectomy!?! That is AWESOME!! Bring on the nausea!! I will take it.
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So I suspect my MO wants to try me on taxol and herceptin for 12 weeks. Anybody go through that one? Can you give me an idea if it is easier to handle than TCH? Man, was I sick.
I'm still so hurt by my coworkers. I'm not sure how to behave when I finally go to work tomorrow. I really don't want to go I'm so ashamed.... :-(
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Pbrain: I am finishing up my 12th treatment of Taxol and Herceptin tomorrow. I've had very minimal SEs. Actually, the hardest part for me was dealing with the SEs of the steroids they gave me the night before. Sleeplessness and my skin would break out.
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Pbrain - YOU have nothing to be ashamed about, and if you're co-workers think differently, they're just wrong, so they aren't worth the time to worry about. Good luck.
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Thanks guys, I just feel so blue today. I think my some of my coworkers like to see me down. They are jealous of me I think and they want to make me look bad. I can't even find my dust pan.
I don't need to justify myself to them. Sorry, I'm rambling but that was just about the meanest thing anyone has ever done to me. And they think they are fine with what they did.
Oh well, I'm going to let it go, show up at work tomorrow with my wig and pray that my only SEs from the next treatment are zits ;-)
You guys are the nicest people on earth. I wish you lived in Indianapolis!!
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Pbrain--oy vey. Boy the situation with your house-cleaning friend just gets stickier doesn't it? If I were in your shoes I'd still definitely hold her accountable for her actions, and I think a word to HR might not be a bad idea. She created a situation with a lot of liability, what if something valuable turned up missing?? I have no idea what your relationship is with your coworkers. I know for me, that if one of them invited everyone else over to help clean my "filthy" house and I complained about it that it might not sit well with them. Not because I don't have a right to be upset about tons of people in my house without my permission while I'm gone, but because my coworkers are truly my friends and I know they would try to help however they could. Maybe the others (besides your ill-decisioned friend) had good intentions of helping and really wanted to do something nice for you. Know what I mean? Like I said, I don't know the whole situation and all of the people, so I may be off base. But in the end....your house is clean and you didn't have to do it
I'm sorry though that it's so weird with your coworkers and having to worry about how they think of you. I'd be bothered too. LeeA--I hope your drains come out soon. That really made a world of difference for me. I am surprised mine came out so soon too after seeing how long others on here have kept them. I have no idea what would cause such differences in fluid output from person to person. I still have pain for sure, but thankfully am not needing much more than Tylenol or ibuprofen from time to time. I have really been taking it very easy...being LAZY. I'm generally not one to sit around much but I've really let myself relax and heal during this time. Unfortunately I go back to work tomorrow. We'll see how that turns out! My chemo starts Dec 4, so I'll be taking more time off or working from home if that gives me a lot of fatigue or sickness.
Nicky--wow, 2 hour drives for chemo? That's rough. I can see your concerns with being far away from your dr. in the event of complications. And also for caring for 5 kiddos. ((hugs)) I have no knowledge of FEC, but maybe some other ladies on here do and can help with your questions. All these dang meds and their side effects! I start chemo Dec 4, I just want to go ahead with it so I can know how I'll be with it...the waiting to see how "bad" it will be is awful. I just wish I had a magic ball to see what I was in for, or maybe not, yeah that's probably not a good idea lol.
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Pbrain The only thing to watch out for on Taxol is nueropathy. Report any symptom of it. If it gets too bad then your onc will switch to something else or reduce your dose. Granted I got it with Taxotere but I hear it is a little more common on Taxol.
… and stop worrying about the damn house cleaning. Pbrain shouldn't stand for Poop-brain. Now get that shit off your mind (pun intended)
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