TRIPLE POSITIVE GROUP
Comments
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Bren what an ordeal! They don't tell you but there can be hiccups along the way. My hiccup was shingles (after chemo) that delayed my exchange. Annoying but we all have at least one.
Patin my BS considers me PR- but my MO says positive at PR 5%. So I'm almost PR- … so yes you are in the right place.
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Thank you SpecialK and lago! I just sent a PM to Omaz.
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LeeA-- yes my nail grew back took some time though.
I had Taxol every 2 weeks for 4 times.
The herceptin alone they have never rushed it I still am there for 2hrs.
and still get pre meds before hand they said they do it for everyone so they have less side affects.
I so can't wait to be done I have 5 more herceptins to go.
today is the day one year ago that I went to the doctor OBGYN for pap and the breast was looking different that was the start of this whole mess.. I started to cry and think of everything I have been through in a year.
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I just let them access the port without any cream. It seems barbaric, but it is quick and while it hurts, it is very brief and then you are done and ready for their fun and games.
Ok ladies, wish me luck. I go for "chemo lite" tomorrow. I have no idea what that is, but I have anti-emetics in hand. I'm going to ask for a detailed explanation on how many I can take and when. I'm going to do well this time!!! I just hate how awful I smell when being chemo'd.
Bren, you crack me up with your entourage. You sound like chemo Griswalds or Mariah Carey!
But you gotta do what works for you. I have two cheese sandwiches on white bread (WASP soul food), some Vitamin water, and a Sugar Daddy in my napsack for tomorrow. That, the benadryl and my iPad ought to keep me occupied for awhile.0 -
My herceptin is 30 minutes. I have had no issues other then my nails are now very brittle. Yeah only 3 more to go !!!!
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Wow. Haven't been here in a while and catch up again! There must be something wrong with me (as friends tell me, ha ha) because I never had any sort of numbzit before the port was accessed and never felt a thing except once and that wasn't any more than the old needle going into the vein. How weird but I had the big power port and it was close to the skin so they didn't have to go far to access it so that could be why.
I sure wish I'd have had the slower Herceptin times and then perhaps I wouldn't have developed the EF problems (and only made it to #10 on the Herceptin) which is what they are now saying; slower is better. The treatments are constantly changing and usually for the better as the research continues.
Hooray Eileen....almost finished! How exciting!!
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I got Taxotere, pbrain. And remember, they adjusted my chemo amount too. It helped. So try to explore that, as you are already one down!
TonLee, that was not a good day.
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Moon, did you get less sick with less taxotere? Was it easier for you to handle after that. I hear if he does take it down, it will only be by 20%. Is that enough?
I was so sore through my belly last time, for almost 2 weeks. I had night sweats for 3 nights where I just reeked of chemo. I don't think I'm meant to be the human sponge for this stuff. I get the vibes I didn't metabolize it well.
I'm not sure what they have in mind, but to be honest, I'm am seriously glad I got one of those under my belt. I don't want this coming back, ever, ever,ever.
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pbrain - can you get some extra IV fluids as well? Might help you flush and may really help with nausea.
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AcK, didn't realize there were three pages, oops. Pbrain, I see they are doing chemo lite, good. It's Doable. You will do well!
Bren, man that sucks! But definetly heal first. I had to delay my first chemo about a month due to surgery to take out my TE for infection. same reason, heal first, chemo real dioes take a lot out of you.
I too, had Herceptin in 30 min. And had EF issues and had to stop. I will bring it up to mo when I go back in Jan. Or perhaps email him. Maybe that will help newbies starting out.
As for port access, used freeze spray only and for the first couple times. After that, it was so short of a pain, I just did without. Unless my reg lab tech or nurses weren't there, then I wanted it again. Much love to all, I am sure I missed lots of people, know you are in my thoughts and prayers.0 -
Pbrain - I sure hope your chemo goes better for you this time around!
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Pbrain, 20% dose reduction in taxotere spelled a world of difference for me.
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Pbrain,
My 2nd and 3rd treatments were way more tolerable than my first. I guess my body wasn't prepared for the shock of the first treatment. I also learned how to manage some of the side effects, so I felt I was more prepared.
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Whew missed alot again---everyone sounds so busy with this crap it's awful--I feel so bad for u gals, but really it does get better, honest.
PBrain on pins and needles wsiting for this treatment--I pray rhis one is so much better. Well they now know u'r SE's so they will be gentle with u.Bren u did all that and came home unchemoed==Oh geeze. Well that's really good u'r Drs. are being cautious.
I don't remember another thing on this board. I'm sorry. LOL
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LeeA, I still think it’s odd that they are starting you on herceptin alone. Yes those are the drugs most of us get, and Dr. Slamon recommends. LeeA, what is the thing on your arm if not a lymph node? Really interesting that they are starting herceptin first. I’ve never heard of that. I’d be interested in the explanation for that. It sounds logical -- I wonder why they don’t do that more often?
Pbrain, dancetrance had some article about how it seems to be genetic how people respond to chemo in terms of the side effects. I remember that from awhile back even though I’m new to this thread ha ha. GOOD LUCK TOMORROW!!!
Hey did anyone who had the side ache thing also have weird smelling pee? Since we’re all about TMI here… dechi so glad to hear you’re in the clear with it!
Lago, I find it bizarre that no one has snapped you up yet! How is that possible?
TonLee, are you aware of research that shows that a slower infusion time would be better? If so I would love that info.
Bren, what can I say? Eesh!
Omaz – I have maxed out my PM quota for the day but if you could please PM me your rads protocol, I would so appreciate it. I start week after next.
Cami, I have a document open on another screen where I respond and comment to these – I would never remember either! Hence the epic length of some of my posts.
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cypher - This is my post, copied/pasted, in response to TonLee a few pages back re: Herceptin. It could be that I start on the whole shebang this coming Wednesday but if nothing else - I'll be starting on Herceptin next week. Whatever happens, it happens Wednesday. (editing to add: I still have 37+ output in each drain today so I doubt they'll be coming out tomorrow).
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Yep, TonLee - that's what he said.
I guess he really wants to get the Herceptin going. I'm at 3 weeks and 1 day since surgery.
If the breast surgeon and/or plastic surgeon think it's too soon past surgery to start chemo then he wants to start Herceptin and then add in the taxotere and carboplatin at the next three week appointment - or that's how I took it.
I still have about 45 cc daily per drain so I'm guessing my drains won't be coming out tomorrow.
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It's interesting. It seems like a smart idea. I wonder why more oncs don't do that. Are you going to be on it for more than a year total, do you think? Or is the idea that you'd start earlier and end earlier? I've never heard of anyone else doing it that way but it seems so obvious in a way. Hell, I had 5 weeks btw my lump and starting chemo b/c I wanted to take a trip - if they had started with the herceptin they could have given me a dose before I left even if I wasn't sufficiently recovered for the hard stuff. I see why you were so excited about your onc -- thinks outside the box it seems.
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cypher - I was curious about the slowed infusion time but can't find any studies. I did find this regarding overall infusion time.
You can find the info by searching the page for the word trastuzumab
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PBrain I too let them access my port many times without cream. Some nurse's are better than others. My chemo nurse was amazing. I never felt a thing. I tended to forget most of the time… and my last time accessing the port was for the blood draw before port surgery. I was creamless because I forgot. To be honest I don't feel the cream worked very well on me.
PBrain you are consuming lots of liquids, right. It really helps. 20% reductions should help.
LeeA I can understand why they are starting you on Herceptin if you aren't ready for chemo. Eventually you will get them together but I'm sure they want to get you started on Herceptin as soon as possible. When your body is ready for chemo you'll get it.
cypher highest unemployment rate is found in folks age 45-55 but it does look like things are started to improve, slowly.
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PBrain - good luck today, hope the SE's are kinder to you this time!
I also got all of my Herceptin infusions over 30 minutes except for my very first infusion with the TC. I have had no issues but like Eileen I have brittle nails now. Never attributed it to the Herceptin....hmmmmm
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Re herceptin infusion time. I brought the subject up and plan to do so again as a warning. This is a situation that if you heed the warning may cost you half an hour every 3 weeks and but save your heart function. I frankly don't see a downside but please tell me if you disagree.
We discussed it in the forum previously but had a larger discussion when I had my first and only 1/2 hour infusion. I believe it was my 16 herceptin infusion and my 10th herceptin only so I had plenty with which to compare. I went in feeling great and came out knocked for a loop and it lasted for weeks. I didn't get any other infusion meds . It took me days to figure out that it could be speedy infusion. I asked others in the forum and it seems that a few who have had heart issues had the fast infusions. Ton Lee got all of hers fast so had nothing to compare.0 -
Pbrain- the nurses hung a bag of saline with my taxotere this last time. I don't know if it helped me or not, but it seems like it pushed it through my system and out faster. I seem to have come out of this treatment with a little more nausea, no vomiting. But less of any other SE. Nausea was manageable. Each treatment has been different for me. The first was the worst, then progressively better, but different. Pray your treatment goes exspacular (the word my 8 yo cousin made up) today!
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Helloooo ladies! I am jumping in from the TCH thread - LeeA and I go to the same onc and I just wanted to tell you that starting Herceptin ASAP is something our wonderful onc has done before, at least in my case he did. I was diagnosed with a recurrence a year ago October (24th to be exact). I spent November getting all the tests (bone scan, PET scan, EKG. echo, breast MRI,) and right before Thanksgiving I had my first Herceptin infusion. In my case, my husband and I had a trip to Florida/cruise planned for the last week of Nov into the first 2 weeks of Dec that I did NOT want to cancel so I didn't want to schedule my surgery (lumpectomy) until after the trip. After some discussion with Dr. M on the treatment schedule we both saw no reason to wait on the Herceptin so I had the one infusion before I left and another after I got back, had the surgery on the 21st of Dec, then started radiation in Feb (I did a clinical trial that determined the order of treatments) THEN I started chemo in mid March, all the while continuing with Herceptin every three weeks. I will be having my last infusion in Decmeber.
So yes I agree that we have an awesome onc who thinks outside the box and wants what's best for his patients, who told me I should absolutely go on our vacation even though other docs, friends and family thought I was nuts and worked out a treatment plan to accommodate my wishes. He is the BEST!
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pbrain they reduced my taxotere dose by 20% - I argued with them on that but i was told that they could adjust the doses safely without comprimising the efficacy of the drug. I could barely walk with the first tax, with the reduction it made a world of difference. I sailed through the last 2 treatments (well not sailed, more like hobbled but that was better than crawling!).
leeA i think that is very forward thinking of your onc to give you a dose of H before you are ready for chemo. Mine kept my H going right up to my surgery (i had chemo first) so I felt better that I had some protection.
kellogs i have extremely brittle nails now....I thought it was residual chemo but must be the H.
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Thanks everyone, I'm headed off. One of my friends who didn't agree with the screaming about my dirty house is taking me. He's a nurse and likes to scare me to death with gruesome chemo stories.
I'll keep everyone posted and hope you all are feeling good today!
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Wow, I had an interesting morning.. Had to have a routine bone density test,wanted to get it before Dec 31st since I have met my 2012 deductible months ago. I will try to be brief. The facility that I go to could not to it until January so I had to schedule the test with another facility within my network. The tech giving me the test and I were just talking and low and behold she too is in treatment for triple positive BC, she gets her treatement at the same place I get mine and she and I have the same chemo nurse. What are the chances of this ?? She is 2 months behind me with treatment.
Her fingernails are just like mine,very brittle and kind of peeling the top layer. She has a LOT MORE HAIR then I do,but she is only 48 yrs old and I am told that as you age your hair grows slower and becomes thinner.
I think this her2 is more common then the stats show..
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Very interesting about starting herceptin alone first. As long as you get the recommended TC combined with H later ..or whatever other protocol.... And the same total yearly dose..why should it be a problem?
Change comes slowly in these protocols and I can understand why.0 -
Hi ladies--I like that onc with starting the herceptin--alot of the stuff with herceptin is so new I don't think all the studies have results in yet.
Pbrain like I said waiting for how u feel.
haha Cypher u'r memory isn't so good--u'r another one that can do the 2 screen thing--it amazes me really, I can barely get one screen going.
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Eileenohio I have only met one other triple+ in person. She was diagnosed a few months after me. We have the same team of doctors too… and she lives in my building! Oddly enough she's in her 60's and I was 49 at diagnosis.
My nails (all 20 of them) are still brittle and looks like they are going to stay that way. My dermo say its taxotere.
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I was lucky enough not to lose any nails but they have definitely changed! I always had very strong, long, beautiful nails. Now they are brittle, ridged and I can't keep them long cuz they break on me. UGH! I guess I should count my blessings
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