Taxotere, Carboplatin and Herceptin
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Judy that started after tx 2 with me. I started taking Acetyl-L-Carnitine. Never got it again in my fingers but only in my left heel. (Actually do have some still in my left heel but only numbness not pain). Check with your onc before you take it. Here is a link on the NCI site stating they are testing it for this (see section: Clinical Research Ahead).
Here is an abstract on L-glutamine also although I did not take that.
You must tell your onc about this. This is an SE that if it's too severe they will reduce your dose.
Amelie_Rose My BS counts my NED-verary on the date of my surgery when the cancer was removed. I'm not sure if it's different for those who did chemo first but it makes sense that surgery would be NED date unless you got complete response with chemo if you did chemo first. In your case I would ask your BS.
dougieswife I have been diagnosed with LE since my 4th tx of chemo. I still did the exchange, revision etc.
SpecialK you do get your life back. For me now it's just a few extra appointments. I see my BS, onc and PS (I think with PS) once a year but I also don't have mammograms anymore so it's really only 2 extra appointments.
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Special K.....Did you have your port out before your exchange? I just realized that you went until the herceptin was finished for the exchange. I am meeting with my PS this Friday to discuss my exchange. I now have Lymphedema so that kind of messes everything up (in my mind it does) for my exchange. I don't want these dang TE's all summer!!! Oh well....
Judy....I just started with numb/tingly fingers and toes, too. My MO wanted me to come in before my next appointment to talk about. I was given 2 options, lower the dose of the Taxotere or take neurontin. I went with the neurontin. Since it's not painful and I go next week for tx#5, I will go for the full dose until it really interferes with life.
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Amelie_Rose I'm sorry you've had a bad experience with your MO too-I definitely encourage you to make a change after you get through the Herceptin. I just couldn't deal with it while I was still going through so much treatment. As Amyisstrong said, I just felt too vulnerable. But like you, I love my BS and RO and that certainly helped me get through the year. I count my NED date from surgery because I consider it the point at which the cancer was gone.
Re: neuropathy-I developed neuropathy in my hands after chemo ended. I took Acetyl L Carnitine during chemo as a preventative. I've been taking B6/B12 ever since chemo and it is gradually resolving. I know others used L-Glutamine as well. I think all 4 can help nerves repair themselves..
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Is anyone getting 4 TCH chemo treatments? I will also be on herceptin for one year. My oncologist is certain that there is such a small difference between 4 and 6, that it is not worth the side effects/toxicity of going with 6. There are studies that support this. It still seems to me (unscientifically of course) that most are getting 6? Any insights anyone can share?
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Gee I wish I could have stopped at 4.
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Itzme - I think 6 was used in the big BCIRG006 trial that compared TCH to AC->TH for HER2+ women. I looked into it a lot and never found rationale for the 6 over the 4. If you find one I would like to read it.0
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itzme - I think tumor size and nodal involvement are possibly dictating some stopping at 4. The folks who have smallish tumors that were probably eradicated with surgery but are Her2+ and need the Herceptin seem to be getting 4. I had positive nodes and a larger tumor so I did get 6.
dougieswife - I still have my port. My MO wants a PET scan prior to removing it and it was scheduled for last week but had to be cancelled because my insurance could not complete the authorization prior to the deadline for ordering the med, and my exchange surgery. I also had an appt with my BS last week (he would be the one who removes it) and he wants me to keep it for a while. I am conveniently located to the MO office for having it flushed so it will stay in for a while. I also have early stage LE on my cancer side - it has flared from the surgery but I am also having an allergic reaction, so everything is swollen and upset right now. I went to the PS this morning and he removed the drain (yay!) and he thinks I am allergic to the Betadine wash. I am inclined to agree with him because I was already covered with a rash on the contact area prior to taking the oral antibiotics, and the one they gave prior to surgery is one I am not allergic to.
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Special K ~ My brother had open heart surgery about a year ago and was also allergic to the Betadine wash. He didn't have the same symptoms as you describe but eventually he shed his skin like a snake! My poor SIL was pretty grossed out...LOL! Sorry you are having issues, but at least you are mostly on the other side of the surgery. I have quite a few drug allergies (even Tylenol) and sometimes doctors seem annoyed with me about it. As if I have a choice? Hope you are feeling better each day. Linda
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You may find these interesting Omaz:
You may have to register to log in but it was no trouble and no cost
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Hi Itzme - I had seen this study last year, thanks for reminding me about it. I hope some other group will be able to repeat the results with more HER2+ patients.0
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Special K, - hope the rash is better. Def. sounds like some sort of allergic reaction. I developed an allergic reaction to the dermabond my PS uses. Didn't show up until my exchange surgery.
Thanks for all the input about the neuropathy. I did let my onc office know first thing yesterday morning and the nurse told me to let them know if it got worse. She said they would monitor me closely and she did tell me it was from the Taxotere. I am already taking L-glutamine, and I take Zinc L-carnitine to help the taste buds, but it has a lower amount of carnitine in it than taking L-Carnitine by itself. I will up my dosage on that to see if it helps. Can't do the subling. B12 thing because that always makes me feel like I'm having a heart attack. Good to know that the neuropathy should go away after tx. I just need my body to hold together through two more tx's.
Amelie, I think of myself as cancer free from the day of my surgery, but the date I was diagnosed sticks with me the most and I know I will be aware every time it comes around.
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Hi everyone...
Had my last neo adjuvant tch chemo last Tuesfay and for me it was neither better nor worse than the previous ones.
Had my post chemo, pre surgery( docs said lumpectomy..I've been weighing BMX) MRI yesterday and I have good news for all of you. There is almost no sign of my tumor left on MRI. Until surgery and the final pathology we won't know for sure if it's a complete pathological response but the BS says this is what we hope for. Chemo works ladies. We also have surgery, rads, a year of herceptin and hormone therapy to help us win this ight.
My BS says its on to lumpectomy and rads. I'm still thinking!
Will we bc ladies ever take even great news as the final word after the initial diagnosis? Probably not. but for now my nearly 3 cm tumor has just about and maybe even completely melted away!0 -
Congratulations Ashla! Not to sway you either way, but my tumor was 1.9cm and I had lumpectomy prior to chemo. I am glad I made that decision. It's a very personal choice though.....do what feels right for you and know that whatever decision you make is right. Good luck!
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Great news, ashla! PCR, or even close to it, is awesome, and knowing the chemo did its job is a very satisfying feeling... My BS told me today at my follow-up appt that, by clinical definition, my cancer is gone, but I just can't seem to think of it in past tense. I hope we can get there some day.
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Thx Kelloggs and MizMarie great news too!
Statistically and intellectually lumpectomy is appropriate and very effective survivalwise for most women.
These forums have veen so helpful and so inspirational to me but the most obvious lesson I've learned is that no matter which choices we and our team of DRS make....there is way to end the worry.
It seems that the further we are from dx without recurrence the less time we spend worrying about it but it never ever goes away.0 -
That is good news Ashla! Good luck with which ever way you decide to go surgically.
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Ladies - just had my annual mammo and appt with the BS on Tues. All perfectly normal - YAY! But what I am writing about was this - I read on this board about the damages to your thyroid that rads can do, and even excess radiation from mammograms. The post said that you can ask for a little lead shield to put over your thyroid to block excess rays from that area when you do the mammo. (sort of like the one they put over your body at the dentist when you get xrays)
Well, just as I was getting positioned into the machine, I remembered to ask for it. She was glad to give it to me (it was put away in a cabinet), and it only took a minute to attach it around my neck (sort of like a priest's collar, if that makes sense). I felt SO good about taking that small step to protect myself and wanted to pass this tip along in case you had never heard of it.
I asked why they don't have everyone wear it, and she gave me some line about how it's only the same amount of rads as watching tv for 2 hours or flying on a plane, and all that. But I thought "We've had so much radiation already and it's so easy and only takes a minute - WHY NOT???"
Hope this helps somebody.0 -
Judy
I thought long before posting that It's that head game we deal with that makes us fearful and reluctant to believe and tell others POSITIVE news. It's as if it will somehow jinx your outcome!
I just wanted the majority of you ladies who had chemo AFTER your lumpectomies or MX/ bmx's or are just beginning this journey ...that this chemo stuff works.
If they could just figure out something that fixes the mental part......0 -
Amy - I asked about it during rads but they wouldn't give my anything. I don't know why.0
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I never even THOUGHT to ask about it during rads. This was just during my mammogram. I do know that the RO told me that the rads beam is very very directed and not a lot of extra rays escape - or some explanation like that.
But in retrospect, i wonder why they don't. It is SO simple and such a minor thing.
Slightly off topic, I think that society downplays the risk of rads in general. When i went through the backscatter scanner at the airport last time (no choice), they said that same standard thing "Oh it's less radiation than 2 hours of tv or flying on the plane." But for me, it is all cumulative, and i want to avoid it as much as possible.
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Well I just got back from TCH#5 but I probably shouldn't post here since I only got TH. My platelets were too low and my MO dropped the Carbo today. She said it was the least important one and she had no problem not giving it to me. Maybe it will help with all the SE's.
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Kelloggs, When I went in for #4, my platelets were too low, and I was given only Herceptin that day - I had to go back the next week and luckily, my platelet count had improved enough to get the TC. Will you get a "make up" dose of Carboplatin?
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MizMarie - My MO said that skipping just the Carboplatin was ok...she did not mention needing to make it up. She said the most important was the Herceptin and then the Taxotere. I suppose if they go back up by my last treatment I will get all three again. Feeling pretty good so far. SE's don't usually hit me until Sunday.
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Ashla, I know what you mean. I mostly feel very positive about my outcome and treatment, but I always feel the need to put a disclaimer at the end when I'm talking about it to friends and family. It's my verbal "knock on wood".
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Hi Ladies,
I am new here--my name is Caitlin. I thought I only had DCIS, but had a "feeling" that I should go ahead with the bmx and reconstruction. Smart move, because it turns out I had a tumor and it had spread to two lymph nodes. Waiting to heal from my BMX before having a PET scan.
I have been given a choice whether or not to go with the AC-TH or TCH-H options. I am leaning toward the AC-TH as I have a highly aggressive form of cancer-9/9 (I have googled this, but can't find any info on what it means). My onc. told me that the AC-TH option has a slightly higher success rate3-4% which may not seem like much, but I figure I need all the help I can get. I know the risks to my heart, but I feel I need to get through the next five years vs. worrying about what might happen years from now. I am 40 and have a 15 mo son.
Thoughts?
Thank you for your support!
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Sent you a PM
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Caitlin - welcome, and I'm sorry you have to be here. This site has been a wonderful support to me, and I hope it is for you too. No advice from me - I can barely figure things out for myself.
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Ashla,
I had similar results from chemo and went with a lumpectomy. I was prepared to go back into surgery depending on the path report, but it was not neccesary. In my case chemo took care of the tumor as it was not at all visible in the MRI after my 4th treatment. My sugery path report was completely clear. They went ahead with #5 and 6 and I had radiation after the lumpectomy.
I was given the final say in what I wanted. The BS had me meet with the PS just in case I decided to go with BMX. I also went for a second opinion. My MO and BS are part of the same team and both were going to support what ever I decided. After going through chemo I felt that my body was weak and I would go with the least invasive treatment first, knowing there are no guarantees.
You are so right about the mental part of this. I am a very calm person and takes things in stride, but this has me in inner turmoil much of the time. It is hard for me to think in terms of the future. I find myself thinking I am not going to be around a lot longer and it is hard to make plans. There is no reason to think I won't be. My response to treatment has been great and my MO tells me people like me do really well long term. Like you said, you hear positive, but you are afraid anyway.
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anafoefana,
I'm pretty sure I'm going for the lumpectomy at this point too. My surgery is on the 13th so I still may change by mind. My BS and MO although not a team work very closely together. Both of them were sooo happy. Think how good it must feel for them to have some good news to tell their patients and to actually see the results of their work.
The statistics show very similar survival rates for most...not all.... women whether they choose lumpectomy or MX/BMX.
My BMX thinking was to alleviate the head game of incessant worry. I have learned so much from these ladies in this forum but the most important one is this. There is no end to the worry either way. The ladies who've had MX and BMX find lumps on their scars and have issues with TES and infections and their hormones and periods. Some are considering ovary removal for good reason.
Down the line there will be issues with tamoxiphen and blot clots and our uteruses and a million other things.
My MO is very zenlike. He never gets into statistics with me. Yesterday he said start planning some vacations and cruises. He said you'll be worrying about things for the next 50 years!
WE must all try to get to the point where we enjoy something in every single day and only think about effin bc...small letters bc.... when we have our checkup.
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Hi Ladies. I have a question, maybe someone can ease my mind. Of course now a days we worry about every little thing out of place with our bodies. I woke up this am with a red lump on my form arm. If you are looking down at your arm, palm up, it is about 2 inches down from my elbow on the inner side. It is hard and feels like a bruise, but of course I don't remember hitting it. It hurts quite a bit, but I am not sure what it is. Don't want to call the doc on the weekend. Anyone have or had anything like this? Thanks in advance. I hate worrying like this. Makes me cccccrrrrrraaaaazzzzzyyyyyyyyy!!!
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