Taxotere, Carboplatin and Herceptin
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Hi everybody - hope you all had a good Christmas. I see we have a new camper - welcome Bold - I hope all went uneventfully at your first chemo - it sounds like you came prepared. This is a great site for griping, venting, and sharing collective wisdom.
Gail - I love the "selective" hair regrowth idea! My eyelashes and eyebrows came back quickly, but the hair. . . ! I'll post a "topless" photo soon, but it is NOT growing fast at all.
I saw the PS today, and I am officially DONE with reconstruction - he wants to see me in a year. Woo Hoo! Like I've said in the past, if I'm in a dark room, and look in a dirty mirror, and cross my eyes, I have a perfect pair! (I had a unilateral mast. with implant reconstruction and a lift on the "real" breast.) Seriously, my daughter asked if she could feel the other day, and she couldn't tell the difference. I can wear anything I want in a regular bra - and don't even need a bra, actually.
Those with the low HGB - Mine went down to 8.something during my last two TCH tx this summer and I didn't have a transfusion or Aransept - my levels improved every time I went for Herceptin, and were back up to normal in about two months. Lisa, eating well will help, I'm sure, but don't beat yourself up for what you eat - it's the toxic chemicals they're pumping into you, not your diet!
Shelby - Sorry about the heart enlargement. I've never heard of this being a side effect of Herceptin. Does a MUGA show this, or only an echo? My latest MUGA was 75% - even higher than the baseline. Hey - go skiing and don't worry about it (easy for me to say, huh?) - I'm sure they'll figure it out before your next Herceptin. My husband always gives me a hard time about needing House whenever I'm obsessing, but it's seriously too bad we don't have some genius diagnostician to turn to in our times of need.
Hi to Bethany, Aly, Brenda, and all the other Camp Chemo campers -
Sue
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Everyone that is worried about blood transfusions don't be. I had to have 7 units over the course of my chemo and it always helped me feel better. I would not take the Aranesp (sp?) It has been decided by the FDA that it could cause heart damage but I don't know about Procrit. I had 2 of the Aranesp shots and it did not help me but made spots on my arms and they have not gone away yet. the onc said it was from being in the sun all my life but it is just on my forearms and my legs and other places got sun too so what is up with that. Anyway blood is good! My onc said he never seen anyone need blood as much as I did so if you have to have a little it will be okay. the lowest my HGB got was 7 and I had to have 3 units then. I was told by a nurse doing the blood that it had to get to 7 before they gave blood but that is not true because mine was 9 and I got blood then too. Mine just fell everytime I got the TCH so I guess he wanted to stay on top of things. The bad part is when you get blood it causes your platelets to drop too so if you get blood you need to expect the next test will show lower platelets but they will come back up. Your bone marrow makes these counts go up and so it does not matter if you eat healthy or not it will not help. I do think if you feel like eating healthy do but if all you want is junk then eat junk. You will get some nutrients even in junk.
Shelby I hope they figure out what is going on with the heart and I know how you must be freaked out. I would be! They have not told me what mine is yet but if I ever get to see the doc again I am going to ask. I hope I can keep taking the H.
I am supposed to get set up for the rads today if someone does not cancel again on me. I may say forget it if they do. It is so stressful to think about this and then just be dropped. My brother is not doing too good right now either and I don't hear anything from them. When I do my sister is so negative. I did not sleep too good last night because I kept thinking I was hearing the phone ring but of course it was not. My husband said we could go down there but I really don't see how we can. I am not even sure he wants us there.
Susan just rest and drink fluids. You need to get to feeling better before you worry about the muscles. All this has taken a toll on you so be kind to yourself.
I am thinking about all of you and all you are going through.
Carolyn
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Well Shelby, that just sucks. Did the doc say you were safe to ski or jog while they get to the bottom? Are you going to see a cardiologist? Please keep us posted. Prayers are head your way!
Blue, I guess I was allowed to skip the transfusion because I feel fine. I do get winded when I have to cary a 50lb bag of horse feed very far, but I am sure that is just muscle atrophy due to so much inactivity thru the first 2 tx's. I am going to try an iron supplemnt that was suggested by a freind that just finished treatment for ovarian cancer. Her hgb never dipped past 10.1. He he he, don't even suggest that I can continue to eat junk!! I don't need any encouragement in that department! My docs office is open MLKD, however traffic will be a nightmare because the office is only a block from the parade staging area, ugh...
Lisa
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Susan I know what you mean with achy legs and hips. Mine hurt me every day. I thought it was just me. I finished my chemo dec 2nd and I am still exhausted. I know you are two months ahead of me but you have had surgery and alot more going on to wear you down. My onc told me it took months to bring me this far down and it will take months to build me back up. It could take up to a year to really feel 100%. I do agree that we should "push back" when we can but sometimes you just can't. The smallest task like washing dishes makes me feel like I just ran a marathon. If I cook dinner I am usuaslly to worn out to eat it by the time I finish. We just need to be patient. It will get better.
Shelby, I am sorry about your echo. I hope you get answers on that soon. I know it is stressful. I pray that you have peace about it until then. God is still on the throne, he is still in control. I am comforted by Philippians 4: 6,7. God says be fearful of nothing. So everytime I worry about my scans this week I hear those words. Be fearful of nothing. I will keep you in my prayers. I hope you have a wonderful vacation.
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Thank all you guys for your prayers and concern. I am very thankful that my mammo and ultrasound were clear and that the chest Xray was clear. They could have found even worse stuff that I don't even want to imagine in there....and didn't. And most important, they didn't find anything funky that would cause atrial hypertrophy. The interesting thing is that the oncologist at one time had thought to tell the cardiologist not to send the whole report on the echo's, because he really just needed the ejection fractions. But he told me that my case convinced him that he's going to look at the whole report from now on. I think he's pretty sure that it's from the Herceptin, because it's happened SINCE I started taking it, and there was nothing predisposing, like a history of valve prolapse or anything in the lungs or arteries. So I think he might report it as one of those adverse effects that doesn't show up in the clinical trials. But see, it doesn't show up if all the doc looks at is ejection fractions, which he thinks some doctors do. So not to make you all paranoid, but it might be interesting to find out if your oncologists look at the whole report from the echos and MUGAs.
Well, I'm off to pre-op appointments with the surgeon and PS. I'm hoping for no more surprises!!!
Shelby
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kjbell - I had itchy hands too going through TCH. A couple of times I had to take benadryl to make it stop.
My MUGA showed a drop this time around- Im still in range to take the Herceptin so its OK for now. This time was the only time it has dropped(went up during chemo) and it was during rads when I was SO exhausted and could not walk as much as previously. Im finding ways to tackle that treadmill now even when I am tired and thankfully I am not as tired- trying to combat the herceptin on my heart until I finish in April.
Hysterectomy and ooph next week on Thursday so I may disappear from online for a while after that.
Kristy
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Tracy1970, thank you for responding. It is good to know I am not the only one . I have many friends at church that went through breast cancer with chemo , surgery, and rads that never felt any fatigue and continued life as usual. I am happy they were so lucky, but I have struggled so much, it makes me feel sometimes like I am just being a baby or something. I have fibromyalgia so am use to fatigue and pain, but have never had it on this level. You are right...I guess we just have to give it time. I start physical therapy tomorrow and am hoping that will help me a lot. Anyone else gone through PT? I'd like to hear what they did and how it helped. I may be on the wrong thread for this, but thought I'd ask anyway.
KristAnn good luck with your surgery! You will be in my thoughts and prayers! Susan
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Went for herceptin today and I mentioned the itchy hands. Nurses could not figure out why they itch. They called the pharmacy and talked to the NP to see if anything I am taking could cause this as a s/e of "something". They couldn't come up with a reason either. They agreed I should take the benadryl and just be aware.
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Sue - Congratulations on finishing the reconstruction. Fantastic.
Bold -- Hope you are learning how to manage any side effects you may have been experiencing. Please let us know -- we have lots of tips.
Weird about the itchy hands, guys. Take care.
Lisa and all -- I think it's good to eat whatever you enjoy and can digest easily. Drinking lots of fluids is important.
Susan, I also have fibromyalgia and this muscle and joint pain I feel is like fibro on steroids ;-).
Herceptin website says muscle pain is a s/e although my doctor says there are no s/e's to Herceptin except the tiny percentage of heart problems.Onc says it's not the Herceptin, but s/e's left from chemo (ended 10/15). This will just take a while I guess. I wondered......
She thought it best for me to take some time off between Dec 18, last rad, and the first of the year before starting Arimedex b/c it may have similar muscle s/e's and she doesn't want me to get discouraged and stop any treatment -- -- since it's very important.....
Good to know that if there are s/e's with Arimidex that become a problem then she said we'll try alternatives including tamoxifen.....so we'll see --- hoping to just start feeling better soon. So stiff and sore.
Bethany.
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Hey Bethany, did your onc recommend starting on Arimidex rather than Tamoxifen because you've for certain already gone through menopause? They drew some blood last time I had Herceptin to see if I'm actually in menopause or if my ovaries are just "fluttering" (she made me laugh with that one). Are you going to get Zometa? I'm told that in a single (possibly two) dose used as an early treatment (when you don't have metastasis to the bone) it has been shown to dramatically decrease risk of recurrence. I guess they did some trials on it in Germany but the American's didn't trust the German results so they did it themselves and came up with the same results. Also I guess it's a good treatment for the osteoporosis that is a risk with an AI drug.
Aly.
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Bethany: interesting on your adjuvant care. What percentage was you estrogen on you tumor and what is your estrogen left in your system.
I was told that my estrogen in my tumor was only 2% such a small amount. Yet she wants to treat it. Leaving no room for recurrence. I have not had a period in 10 years. I thought that I had gone completely through menopause. Hot flashes no sleep ect... But I was told I am peri-menopause. What a trip and that I have 36% percent still left.
Weird. I have been fortunate with no real side effects just a little tired and jumpy all at the same time.
Tomorrow is new years eve I wish every ona a year of health and a wonderful 200b9.
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Dear Aly,
Thanks for reminding me to put a question about the Zometa study on my ongoing list of questions for my doctor.
Don't know of any contraindications for taking Zometa but unlikely it would prescribed (yet) unless for reducing recurrence: I just had a bone scan that was very good. (despite the fact that I had a hysterectomy/oopherectomy 20 years ago) Perhaps so good b/c I had been on HRT all those years until 2 mos before my diagnosis. I wish I could know that that was the only and real reason for this....but evidently it sure didn't help -- just with the bones. (I'm way old enough to be completely past menopause anyway, but thank you for asking.You made my really made my day). I've wondered many times if the fibromyalgia was perhaps due to the surgery -- so many hormones were radically changed.
Bold: my estrogen percentage was 95% and Progesterone 0% -- but doctor said that the HER2 was relatively more significant....don't know how she knows this. That number was never really explained to me. I can't remember now what it was.
Hope you are all doing well. Happy New Year to all. Bethany
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Wishing you all a happy new year.
I have had two horrendous days of ugly medical appointments, and I'm going to enjoy not having to mess with any of this until Jan. 13, when I go for another pre-op. Found out today how truly scary the reconstruction is going to be and how long it will be until I look and/or feel anything resembling human. I'm not sure I would even go through with it, except that my husband would probably resent "playing with a broken toy", if you catch my drift.
As for me, 2008 can go jump off a cliff. I don't even intend to stay up until midnight to see it off. As with many of you, it was the worst year of my life.
Shelby
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Bold, it is my understanding that not only do the ovaries make estrogen but other glands in your body. I had a hyst very young and so I had 0 estrogen in tumor. Maybe they just go by how much estrogen you have and determine if you are peri or post mena. I don't really know all about that but my friend is 71 and they treated her like she had not gone through menopause. She took the med we call the red devil that is suppose to suppress estrogen. I took HRT for a long time and I stopped it on my on about 5 yrs before I was diag. I often wonder if that was why I got bc but then they don't know but I have had good bone scans so I guess it was good for that. I remember the jumpy feeling at first too. I think that gets better as you get used to taking this stuff. I still get very tired when I take Herceptin.
I have fibromyalgia and have been diag since 1991 with it and I also have arthritis. I did not ask the doc but when I get to the point I can barely walk from inflammation I take just 1 of my steroids I have left and it helps a little. I am supposed to go back to work on Monday but I need to go talk to the manager to see if they have a place for me. I do not want to knock someone out of a job. I won't get to start rads for 2 weeks they said yesterday. They said it takes 2 weeks to get all the numbers figured so they can give me treatments. I did get the CT scan and the tattoos. I was not impressed with the girl who did this but maybe it is just me being anxious. If this keeps on I will talk to my rad doc who is on vacation. I may have another doc I don't know since they seem to switch them around in that area. I was really hoping to get this started so I would not have to drive down town longer but the way it is going my hubby will be finished with his rehab before I even get started.
Sorry I seem so cranky
I can't stand myself when I feel like this. I went to bed at 8 PM last night and I did sleep pretty good for a change. I was awake the night before about every 30 min because my brother is so bad and my sister is supposed to keep me informed but I have had to call her to find out anything. I told myself I have prayed about this and God will take care of what is right so I can leave it in his hands.Well, we must make that trip down to the hospital now. I hope all is well with everyone.
Carolyn
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Dear Carolyn:
I am sorry that you have soooo much on your plate. I hope that you Can take some solace that the tx is slowly progressing so that more and more is behind you and that there is more love and laughter on the way.
Thank you for your insight on estrogen. Kind of funny because I have my degree in Medicine I went to USC as a PA. But the mind is like a leaky urn. I have not practiced for many years.
I am on day three and it has been very unremarkable. I sure hope it is a good sign.
Love to all.
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I think I am in trouble and need some advice. All through my tx the last seven months I did not get sick with a cold or anything, but was so careful along the way. I got my tubes out yesterday after 12 days of being in after surgery for the Modified Radical Mastectomy. About 3 hours later I got a scratchy throat, and by night it was awful. I never slept at all cause every time I would swallow it woke me up. I mean it is the absolute worst sore throat I have ever had. It is so painful. I called the onc office and waiting for a return call. Beings the lymph nodes were taken out and the taking out of the double tubes cause a back flush to the other lymph nodes in the body? Or was I just so broken down after the chemo and then the surgery that I picked up a bug? No fever or sinus or anything, just this massive sore throat. I gargled with warm salt water a few times..no help. I took sudefed...no help. Should I be alarmed? I remember some of you in here had colds at some time or the other, but no one said it was bad. The surgeon told me that I am so weak from the last six months of chemo (I am 7 weeks out from last tx) and my body has no reserve so he won't do any colostomy re attach until I am healed. I was so happy to get those tubes out that even though the pathology report sill is out I was ok, just ecstatic I could finally get some sleep after 12 days and now this. It is far worse than a sore throat. Could the tissue in my throat still not healed from the chemo and just a mild sore throat act like salt is thrown on an open wound? Need help on this one gang...I'm in a whole lot of pain here.0
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Cupcake, you are probably just run down and picked up a bad bug. But "bug" the onc's office if they do not call back soon. You may need some prescription meds and they may close early today for the holiday. Keep us posted.!
Lisa
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Gosh that is just horrible. I would want to know what your white blood count is. I would maybe ask if they think that it would be prudent for you to go to the ER. It seems that you should be on antibiotics. I am not sure and you must realize that we do not have all the information. I just hope that you feel better soon.
Please let us know how it is going.
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Cupcake, I don't know what will help. It is unusual but I did once test positive for strep throat without having a fever (not during chemo). Maybe they will take a throat culture to check.
You might try drinking tea or other warm drink with lemon. Or using medicated throat lozenges to give you some relief. I don't think sudefed will help if you don't have congestion and it may make sleeping harder.
They probably had a tube in your throat during surgery but I don't think that would cause soreness 12 days later.
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Thanks guys. I left a message with onc..no call back...I left a message with surgery dept and got a call back and told to get throat culture. Lots of nurses had it in their dept. I also called PC and going in there in a moment for the throat culture. I did take lozenges and no help really, just made me want to salivate more and hard to swallow. The tube in throat made it sore for a day or two but then went away. It could have made it raw though that hasn't yet. Antibiotics won't help unless it is strep. I just hope it doesn't take 24 hours to get results and then the holiday tomorrow. Your right Lisa most likely being run down to the core and picked up something. Seemed like while on Chemo I was over cautious and since then not so much, but should keep up the hygiene through it all. Well going to run there and maybe pick up some of the throat numbing stuff at least over the counter. I will let you all know
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I agree with everyone else who said it might be strep. That is *so* easy to pick up with your weakened immune system, particularly if you're at the hospital a lot for treatment, etc. I got strep (no fever) the Saturday before I was scheduled for surgery and it had to be postponed. It came right out of the blue. I'm glad you're getting a throat culture, From what you've described, I've got my money on strep.
) Let us know how you are doing!!Aly.
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Cupcake;
I would vote for strep, too. I think you should go get swabbed.
Hey, so other than my apparently benign cardiac anomalies, I finally figured out why I've been near suicidal since having my pre-op appointments yesterday. The surgery. It seems scarier than hell with uncertain outcomes. Like I don't want to end up with a uniboob that's leaking silicone gel into my tissues, etc., etc., that needs to be replaced every 3 years or 75,000 miles. I really bristle against the prospect of being a chronic case for life, I guess. Maybe Sue or someone who's been through the exchange surgery can tell me how long it takes before you can move, have another human being come within a 50 mile radius of your chest, do normal activities. The description of the protective device that I have to wear on the fipple for an interminable length of time sounds like something out of a Devo stage costume. Can't I just have a gender reassignment? It might be easier.
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Bethany;
That looks exactly like what the nurse told me I'd have to wear on my foob after surgery. The red flower pot thing, that is. And then I'll have to lie on my back for God knows how long, so you might hear me snoring in Texas, if I ever go to sleep, that is.
Shelby
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Maybe my PS is a little less careful than yours, because I did NOT wear a flower pot on my chest after fipple construction! Of course, the fipple is not as large as the other one, and a little flat, so maybe yours will be a better bloomer than mine!! As for the other stuff - I was back to work in less than a week ( and that was because I had it on Tuesday during fall break) and able to exercise in. . . 6 weeks??? Amazing how quickly I block this stuff out. Now I'm back to doing some resistance exercising (to attempt to firm up my jello blob upper arms after a year of inactivity) . . .I was able to sleep on my side then stomach in a relatively short time (few weeks????) Sorry I'm such a ditz remembering this - you'll have to take it easy for awhile, but I'm fine now!!
Ski on!!!
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Is it just me, or is anybody else wondering why Bethany just happened to have said Devo stage costume? She's scaring me (lol!).
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Hi Everyone. I have been off-line for a few days and I am just now catching up on your posts.
Cupcake....I would ask the doctor for a rapid strep test. My six year old gets strep sometimes and I always have them rapid test him. If the rapid test comes back negative, then they do the swab/culture. Let's hope that this is just the beginnings of a cold and that you will feel better tomorrow.
Carolyn.....I have been remembering your brother in my prayers. Please be sure to keep us posted on his condition. God Bless.
I just had Tx #4 today. I am feeling very tired and hoping to make it to midnight. My sonogram showed normal kidney function, so for now we are just going to keep an eye on my blood counts and hope that they start coming down soon. My doctor started me on blood pressure meds today. She said that my pressure is up for a few months now and it is probably due to the chemo, so the meds will help keep it under control until I complete the last two Tx.
I hope that everyone has a very Happy New Year
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Good heavens, Aly! I didn't even stop to consider Bethany's potentially sordid and/or twisted past - now I am definitely wondering!!!! Bethany - let us in on your dark secrets! (Do I sound like I'm hitting the New Year's Eve bubbly a little early?) Good-bye and good riddance 2008!
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I went in and had the swab, but because tomorrow is a holiday and my fever is spiking they decided to go pro active and began me on penicillin. The nurse told me to get some cotton swabs and use the baby teething gel to swab my throat. What will they think of next. She said it is bitter, but numbs it and at this point it is so painful I'm willing to try anything. I can't put into words how bushed I am. I mean I have no energy at all, even worse than chemo. Thanks for all your support and help this afternoon I knew I could count on you guys. I keep saying that this too will not last long, and although I was wanting to spend some TLC time with hubby to bring in the new year it ain'ta gonna happen this year. I feel like I got ran over by a truck.
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Just to clarify things...I am the one who originally made reference to Devo's stage costumes vis a vis the alleged CAGE-LIKE ENTITY I will need to bear upon my fipple as it is healing to prevent the collapse/tearing/mutilation of my anal PS's meticulous work. Bethany was merely providing the visual accompaniment to my hyperbolic narrative.
And I assure you, I have not been drinking. I might be persuaded to dip into a bottle of La Crema, which I have set lovingly to chill in the fridge, later this evening, however. I will have no problem saying "Don't let the door knob hit ye where the good Lord split ye" to 2008! If I'm still up at midnight, I'll cybertoast you all!
Shelby
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