Taxotere, Carboplatin and Herceptin
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Ya-Ya- My EF is 59% to start with, I havent started chemo yet. My MO said that was "very Robust" EF. I read that they consisder anything above 50 rather good, as 70 is probably the maximum, since the heart does not empty completely during the pump phase. I understand it can go down, that It will get better after treatment and they watch it carefully. My MO also has email if needed. But I have found the nurses to be very helpful. There is also a Breast Care Coodinator who works with the MO, the BS and the PS to get things going. I have found she is a great resource. She also calls just to see how things are going. Maybe you have a similar resource who can help you get in to see the MO? Or even the BS who put the port in.
I was supposed to have started in Jan, but got sidtracted by an infection, and a picc line and hospitalization. NowI am waiting for the port insertion, I have to get it on the right side, because I have a pacemaker on the left (2011 was NOT a great year for me! LOL). I hope to get it next week, after I finish the anitbiotics. Then they will start chemo. UGH. But, I am tired of waiting.
AMylsStrong, I am glad you feel your function is improving. Good news! Here's to hoping it continues.
Good luck to you both.
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Moon - I like your avatar, made me smile!0
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Hi, does anyone know the "biomarkers" for breast cancer?
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Moon, 50% EF is the lower end of normal per two cardiologist and two Oncs. While 49% is considered low.
My Onc STOPS tx if EF falls below 50. Period.
Medicare pays for a pace maker at 35%.
50% may be your baseline, and normal for you, but you don't have a lot of wiggle room if Herceptin drops it. However, they say, and the literature says, (ha) heart issues are rare with Herceptin.
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tonlee, really? heart issues are rare with herceptin? i'm still worried.0
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TonLee, I already have a pacemaker! LOL- my heart rate fell to 33 at work one day and I went down on the floor- they send me down to ER right away and I had the pacemaker in the next morning. It only goes off 3% of the time and thus was hard to pinpoint when I fainted twice before even with all the tests and echoes, etc. I know 50 is at the lower end, and they will watch it carefully. Maybe he thoughrt 59 % EF is good for me? LOL I know I hve very little wiggle room but I can hope for the best. I will be getting Herceptin weekly at first and switch to every 3 weeks shen the other chemo is done. My cardiologist and my MO will have to work together. I told you 20011 was not a great year. LOL
OMAZ- thanks, I like my avatar- everyone has said that I always have my nose in a book sooooooo........ LOL
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yaya, it's the same at my onco's office too. I never have spoken to him over the phone. His nurse always says she'll ask him and call me back. If I have a problem between appointments with him I have to see the Physician's assistant. I really like her better, though, she's more compassionate. I had my echo last week and met with onco yesterday, my EF is the same as it was for my baseline 60% - 65%., I've only been on herceptin 3 months, so I know I have a long ways to go. I have an appointment Thursday with another RO for a second opinion about rads. My husband rearranged his schedule to go with me. Are you healed up from rads?
On a lighter note my hair is growing, it's very thin, but what I do have is about 1/2 inch and sticks straight up. I kind of look like a porcupine.
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My fourth of 4 TCH was two weeks ago. My legs have gradually gotten noticably weaker. It is really disconcerting.
I couldn't walk up a hill back to the house where we are currently staying. Could.Not.Do.It. I had to wait for someone to head up in a cart. I'm SO bad at helpless -- I cried for ages when I was finally alone.
Is this the TC or the H or none of the above?
I just can't believe all of this. I have 9 months of Herceptin to go. Actually 9 1/2, but who's counting. I wonder what else I don't know.
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My MO is very accessible through email. She responds to email right away and has even called me from home a couple of times when I was having some issues. When it comes to appts and stuff like that I have to go through her nurse, but if she does not respond, all I have to do is email the doctor and it is like magic. The nurse gets right on it. None of the other doctors (RO or BS) have offered their email address, but I think it is a wonderful way to be in touch. I only email when I have an urgent question or concern.
Thanks for the Lattisse answers. Do you have to buy it online, or do pharmacys carry it? I am going to get a prescription when I see the MO in a couple of weeks.
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Theladygrey It's the Tax-I started developing significant leg weakness after the 4th TCH and it kept getting worse. I could hardly get up the steps to the second floor in my house. Everyone here kept telling me that it would improve within a month or two after chemo and it definitely did. Are you done? I was thinking you were doing TC x 4. If so, that may be your saving grace and the leg/muscle weakness may drop off even more quickly. A lot of us got terrible swelling at the end too. I gained 12 pounds during TC and it was all fluid. It seemed like my abdomen was very "full" and my ankles eventually swelled. It all dropped off quite suddenly 6-8 weeks after chemo. I had a fairly miserable time with TC but I will say that I have never had a problem with Herceptin. I hope the same for you:)0
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TheLadyGrey it could be from T and/or H. Once chemo ended I found the stiffness/weakness got better after 5 weeks. It got even better after I stopped H.
I don't know how to tell you this but you will feel better in the future. It just takes time. I too thought I would never feel good again when I finished chemo. Yes I still have a few SE but very livable. Hang in there. It does get better.
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ana - I think you can get it in the regular pharmacy, but it is by prescription.
LadyGrey - pretty normal to have that burning exhausted muscle feeling, especially in the thighs. It is most likely related to a lowered hemoglobin, which oxygenates your muscles. I know you have had problems eating because of the severe SE you experienced. As soon as you can up your protein intake, start loading up. The higher your hemoglobin goes, the less you should have that pain. The good news is no more TC for you, only H. More good news is that the strength comes back relatively quickly. I did have some mild joint aching on Herceptin alone. The first H only infusion I had they did in 30 minutes - omaz advised to slow the drip to 90 minutes and that helped tremendously. You may still experience some brittle or fragile nails, and a runny nose on Herceptin alone. So glad you are done with the T/C.
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Moon,
You may be at an ADVANTAGE with a pacemaker! If you heart goes wonky, it is there to pick up the slack.
I don't think you have anything to worry about. Didn't mean to make it sound like you do. I think I misread your post. I thought I saw 50%....that you were starting at 50-- but 59% is great. Absolutely!
Yaya,
I've read cardiotoxicity occurs in 15-20% of Herceptin patients.
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TonLee - how do they define cardiotoxicity? Is it ANY change? I mean if I went from 57 to 50, would I be considered having had that? Or is it only if it goes TOO low? I know you had a big drop, and I have a friend locally who did as well. I have also heard that TCH is less likely to cause heart issues than ATH (I think those are the letters - adriamycin).
Thanks
Amy
ps. I can tell the L-Carnitine is helping - thanks for the suggestion. Do you see any difference since taking it?
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Hang in there Lady Grey. Happy for you that it was the last of your TC. As everyone says- that does get better. The weakness makes it harder emotionally or did for me. I had burning in my legs. I do remember specifically that I was able to go on a short trip w/ my family about a month after the last TC- and it was great. Not my full steam self, but able to walk around some w/ them.
I have my last H next week--a week from today. Am feeling excited and also weird. One year of treatment is tough, then again, it's almost routine now.
My MO had a phone nurse. All calls through her. I did get calls back, but it was through her. I agree the chemo nurses are the best. I learned to save up questions for them. There was one in particular that knew how to help most any symptom. She was awesome. I am a nurse too- but she was the best at being able to recommend help for my symptoms.
I am trying to decide about keeping the port or not. My MO doesn't seem to care. I have terrible veins so might keep it a while, not sure.
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Ya ya. - I just had an ultrasound on my unexplained lumps. If your MO won't refer you, maybe your breast or plastic surgeon will. I was told it is highly unlikely to recur this close to chemo. Still no guarantees...and now I know for sure. I can't believe they would tell you its scar tissue without even seeing you!
Ana-- I can get Latisse here in AZ at one of the spas, our plastic surgeons, or even my GYN is carrying it. Sally's also has a cheaper version ($40 - 50). Insurance wouldn't cover it.
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Aw man, i thought I knew most of the SE's - how did I miss muscle weakness? I need knee replacements and actually had to postpone my surgery to handle the bmx and chemo. I don't walk well now, I had a terrible time with the bmx and not being able to use my arms to help me out of chairs, etc. Now if my muscles go, my knees are NOT going to hold me! sh*t! I will pray I am one of those that it desn't affect. (yeah, right) Hoo boy! MORE FUN, (I have to keep changing my definition of "FUN"! LOL) Sometimes we are just along for the ride...................
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If you're taking taxol or taxene, watch out also for neuropathy symptoms - report any added numbness alongside tingling sensations for eg.
TH did me in big-time; heart issues, muscle weakness, pain, nerve-damage... They stopped the Taxol treatments four-infusions ahead of schedule. Now. approx 6wks after stopping Taxol, it seems I can tolerate the Herceptin better with each infusion. Heart functions improved, lingering at 56%.
My "normal" LEV was 67%, so of course I noticed the difference, no matter what the 'cut off' may be... My body wasn't fit for functioning at 54%, all these years, there are side-effects to the sudden drop. Makes sense to me. We do adapt, they could mention that up-front (would help), but it's important to be monitored.
@ Yaya: I can relate also to your frustration - I'd say screw 'em and don't give up trying to get their attention!
I think Oncologists must see this stuff as par-for-course, mine was not the least bit concerned, meanwhile I was increasingly and progressively disabled. Eventually it was confirmed that I was having a serious and unsustainable reaction. It's a confusing and irritating attitude to be recieved with; I didn't dig it. Let us put it this way: It's obvious they've not been through it themselves
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TheLadyGrey,
I'm exactly where you are, having completed my fourth TCH treatment a couple of weeks ago. I'm definitely much weaker and more fatigued than I've been in the past. In agreement with the comments from SpecialK, my ONC says it's highly likely that these latest SEs are tied to my low red blood cell counts (anemia) and my continued battles with diarrhea. He said that he's the problem - putting my body "through the wringer" with the chemo treatments.
What's unfortunate is that a drug had previously been available to help with the iron/anemia problems. He called it EPO, I think (not sure what it stands for). Apparently the FDA no longer allows doctors to prescribe it for patients undergoing chemotheraphy. It had to do with some trials that were done that showed it increased the growth of cancer cells. My doctor does not agree with the way the study was conducted and is upset that he can't give me the help I need! He doesn't recommend iron supplements or vitamins because they can cause more harm than good.
So, he and I have agreed that I will just "tough it out" during my last two treatments. I just know that my body will get more worn out and more fatigued, but I also know that an end is hopefully in sight, around mid-March. I'll still be doing the Herceptin, but I really don't see that as much of a problem going forward.
Hang in there . . . the road is getting tougher!
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I am 8 weeks PFC and just lost my bottom lashes on the right eye. I lost the bottom left a few weeks ago. Also looks like top lashes are really thinning. Anyone else lose their lashes several weeks after? How long until they start to grow back?
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Amy,
I believe ANY drop in EF is defined as "cadiotoxicity." Just means the Herceptin has indeed affected the heart muscle.
I am not having my luck with the L-Carn, CoQ10, and Fish oil...lol. I may be in that small percentage of women who never gets their function back.
I have another MUGA next month...but I'm not holding my breath.
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I had my 1st of 12 monthly Herceptin treatments 2 weeks ago and feel horrible. Everyday some new SE seems to show up & then I read that yep it is a Herceptin SE. Can anyone tell me if they experienced this throughout the entire 12 months or is it just worse after the 1st treatment? Helpful hint for others: I do rub DMSO on my clean hands and fingers to reduce the swelling, stiffness and pain.
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Thanks for the responses about contact lenses. I do have glasses, but I hate wearing them. Super, I get to wear a hat and/or wig AND my glasses... is there a website that sells paper bags to put over my head, and will my medical insurance cover this expense?
I'm not really this vain...it's just easier to gripe about hair, etc. than worry about death, heart damage, fatigue, nausea, etc.
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I completed my 4th of 6 TCH treatments on January 24th and like some of you have mentioned I am having much more fatigue and GI side effects. I have to say I think twice about going up and down the stairs to my bedroom if I need/want something because my legs are really feeling tired. I guess I am just glad to know it's probably normal. My MO told me from the beginning it would get harder, I guess I believe him now. I was having a "rant" in my head last night about this, but as RACERDEB said, I guess toughing it out is the only option at this point. When I think about moving on to radiation and the rest of Herceptin it does worry me that I will not feel great for a long time. Hopefully, the end of chemo will at least let me feel like I can get out and LIVE more often then I seem to be able to handle right now. My doctor did prescribe folic acid, B12 and iron for me...having read that some doctors feel supplements aren't good during chemo I guess I will have to have a discussion with him about these. Thanks for listening to my tale of woe...I think I am just at a point where I want to feel like me again, even if it is without hair! Linda
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Christina Trust me the glasses will be more attractive and will not get as much attention as the paper bag. My advice I give to everyone losing hair (or in this case needing to wear glasses) put on your make up properly and ADD MORE BLING. Yes I mean earrings necklace etc.
You don't know me well yet but other's will tell you I'm all about the bling.
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Christina - I agree with Lago. I went on the Kohl's website before I lost my hair and ordered a ton of large earrings of all different shapes, colors, etc... I love wearing a different pair everyday.
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have just now had a chance to go back and read through the posts since I asked about the eyesight.
I am also relieved that I am not the only one with eye problems, and as I am sitting here typing I have sunglasses on, and it seems to help! I tried to get some regular "cheapie" reading glasses, but that made it worse.
I admit I am a little disconcerted....after reading posts about the 4th treatment, I am not optimistic at all that this is going to get worse before it gets better. ( I was thinking that the side effects really have not been that bad....but I guess it is yet to come. I have my 3rd out of 6 on Friday, wonder what little surprises it will hold for me???
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and Oh! I am right there with Lago! I have never been a bling girl, but when I was faced with the prospect of losing my hair, I went out and got a bunch of great earrings, hats and scarves from Le Target! I have found that I do not feel nearly as self conscious when I am properly accessorized!
<-----Note the profile pic....
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Vanlex,
Your profile pic looks great. Love the hat. So far my runny eyes seems to start about 2 weeks after tx and lasts about a week. Eyes are doing better again at the moment. Hope it's that way for you too and that you don't have to deal with it the entire time.
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Hi I just found this web sight and want to know if there are others having problem with Anastrozole? I stopped taking it. Need natural alternatives..What is DIM? Anybody's help appreciated.
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