TCh vs. ACTh
Comments
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MaryAnn - it is unusual to have a port in your arm and I think I would have liked it there much better as it was uncomfortable with bras, summer tops and seatbelts. But I wanted to comment on the swelling...I got that too but in only one ankle and after my 6th and final chemo. Go figure! It was gone in a month. That being said it was minimal swelling for 3 1/2 weeks but pretty puffy for about 4-5 days. I guess it can happen at any point or not at all.
Erica - I also got twilight sleep (versed - and yep, this is what you get for colonoscopies)..it did hurt for a few days and was uncomfortable for a week, then it just bugged me if I wore the wrong thing. I had mine out last month and he did it under local and he told me he would do it in 10 minutes, and he did! Didn't feel a thing, except some tugging. Drove myself too. That hurt for a few days as well, enough that I took vicodin that I had left over from the lumpectomy. You'll do fine I'm sure, and I am a weenie!
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Wendy, thanks for the info on the swelling. I guess it is not that uncommon with the taxanes and mine seems to have already subsided a bit. I do like the port in my arm. It is convenient and causes me no problems.
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My oncologist was getting me nervous this morning. Telling me I had to get on with treatment. I was DXed on Jan 11th. He said there is a limit to when clinical trials will accept if there is too much of a lag between biopsy and treatment (not that that is an issue cause I am not in a clinical trial). I had to have an MRI and a reincision and it was all out of my control. There was no way I could have sped things up. I hate to worry about this as there is too much to worry about as it is. I get my portacath on March 3rd and imagine he is going to want to treat very shortly if not the day after.
I guess I'm a walking time bomb. Wish there wasn't so much to worry about especially when it's out of my control... -
I have a question for you ladies. Is anyone else faced the decision of whether to do TCH versus. ACTh in the absense of having Topo2 data? This is my dilemma and I keep going back and forth but mostly in favor of TCH. Tomorrow I will have to make a decision. I am HER2 strong positive with neg. lymph nodes. Tumor was around 1.8 cm. I would probably go with ACTh if I knew for sure that I was Topo2 positive but I don't have the information and have no time to get it before starting chemo.
Your thoughts would be very helpful. What would you do if you were in my situation? -
I forgot to add. I am 54 and thinking my heart is pretty strong--I was always very active and fit. I would like to stay this way so the thought of risking my heart is worrisome.
Appreciate your thoughts...
E2 -
Erica -- I chose to go with TCH. I did not have the Topo test and am 51 with a family history (but not personal history) of heart disease. I felt the long-term risks of adriamycin outweighed the benefits. But, that was a personal call on my part.
Interestingly enough, according to the information presented at the San Antonio Breast Cancer Symposium, the differences in disease-free survival were greater for the negative Topo2a group between ACT and TC than for those that were Topo2a positive. Go figure. For the negative, the four-year disease free survival is 81% for ACTh and 83% for TCh. For the Topo2a positive group the disease-free survival was virtually the same.
Remember, this is one study, so if there were multiple studies, there might be different outcomes. But, this is the one study (BCIRG 006) that everyone references when discussing herceptin effectiveness.
I will say that I have found TCH to be a pretty easy course of treatment. I've had minor side effects, but nothing that has stopped me from my normal activities. I still spend 2-3 hours a day at the gym on the treadmill and in classes which I think helps a lot.
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Thanks for your feedback Cathy. It helps me to know others are making decisions to go with TCH in absence of the Topo2 test. I have been reading and reading and after all I have looked at I just think the AC risks outweigh the advantages. I also have a 9 year old daughter that we adopted from China and I have to try and keep up with her. It's hard for me to think of her losing another mom...I want to be here as long as I can for her. Also, I am SO thankful that we have the opportunity now to choose. It was not too long ago that women had no good choices. Thank heavens for Dr. Slamon's work to come up with Herceptin and thanks to all the brave women who participated and continue to participate in the clinical studies. I am curious to see what happens with the Tykerb studies. I wonder how soon they will be using this for early stage HER2+ breast cancer.
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Hi Erica - I did have the topoIIa testing done by Michael Press at USC. Mine came out negative. I agonized over the decision of which program to do ... was undecided up until the last day when I had to choose. In the end, my gut told me that TCH was best for me. I felt that there were many cardiac issues from Adriamycin that did not show up until years down the road and are not included in the numbers.
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Erica - But I want to add that, if you have good cardiac function starting out, it is a plus for ACTH. I see many women doing it at the center where I am treated.
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I spoke with my oncologist this afternoon and he said he would be comfortable with me doing TCH instead of AC-TH. I asked him why he initially recommended that for me and he said -- more numbers behind it and also thinks I am young enough and strong enough to do it. But that said he did say he thought I would do just as well with TCH and that he would not let me do it if he didn't think so. It is a difficult decision since it is a newer program and less tested. But there is good data now to support it's efficacy. I guess I'll be going with TCH....good luck to all of us. I do know that many women are still doing ACTH. I guess I'll just be one less. I'm rooting for all of us..I agree MaryAnn it is a very difficult decision. Thanks for your thoughts on this. I am listening carefully...Also I didn't mention--even though my heart is strong I have had a heart murmur since birth and have a bicuspid aortic valve instead of a tricuspid. The last time I went to a cardiologist he said I am fine--only problem with my valve is if it leaks--and he said mine is not. So I guess this is influencing my decision too...
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First treatment on Monday. First I go to the hospital and get my portacath put in. Then I will go directly to my oncologist for my first treatment. They told me the first treatment should run around 4 hours. Any last minute advise for me?
Thanks for this group. It helps so much. There is only 1 other lady at my oncol's practice who is doing TCH. Luckily I will meet her on Monday. It helps to be able to share. Should I get my hair cutoff this weekend??? or wait...my husband is advising me to let it come out on its own...I'm not so sure how I feel about this hair thing. -
Erica -- I honestly believe that exercise has been what has kept my side effects down and spirits up, so would encourage you to try to get physical activity even if it's just walking.
I would definitely advise waiting on the hair to see what happens. I cut my hair in stages and still have some. I had hair down to my waist, so cut it short before I started chemo. After the second treatment, I was shedding quite a bit, so had it cut even shorter. I go in for my third round on Tuesday and my hair loss has stopped. While I am thin in spots, it probably wouldn't be noticeable to anyone other than me had I not gotten the second hair cut. I don't know whether it will start falling out again after the third round or not. It seems like for some women, they start getting peach fuzz hair about halfway through treatment, so maybe this is as bad as it's going to get. I believe Taxotere's (the one that causes hair loss in the combo) makers say hair loss happens to about 80% of patients.
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My hair fell out between the second and third treatment. But not 100% of it ... I would say I have 10% left and no signs of it going anywhere yet (a week after third chemo.) I have to say that this chemo affected me more than the first two. The decadron kept me awake for over 48 hours, no joke! I couldn't believe I was still up but it was IMPOSSIBLE to sleep so I just kept doing stuff thinking I would get tired. Finally, I crashed and could hardly move for the next two days. I'm going to ask if they can reduce the decadron on the next go around.
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Erica - my advice would be to drink water non-stop during and after the chemo for at least 48 hours. I wasn't as careful about it this time and had a bad time with the decadron. I'm not sure water would have fixed that, but it is easy to forget to drink it and then get dehydrated before you know it. And he carboplatin gets excreted through the kidneys so you want to keeps hydrated. Having a premeasured amount of water set out in bottles really helps. I got sloppy about it this time.
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Thanks MaryAnn and Cathy,
I will keep this in mind re: excercise and hydration. MaryAnn, are they giving you Ativan at night? I have a lot of meds prescribed that seem to be sleep inducing. I used to take Ativan many years back for insomnia and the doctor told me to take only 1/4 of a tablet. That 1/4 of a tablet relaxed me so much and worked very well to allow me to sleep. My oncol is prescribing a 1 mg tablet before chemo and at bedtime for 3 days after. I'm thinking this would really be a powerful sleep aid...will let you know. I start my decadron on Sunday...
Thanks for being here... -
I am undergoing TCh. Next thursday is my 5th treatment and after that one left yay, 6tx every 3 weeks started for me Dec 14. I was diagnosed Nov 21. My did show me the benefits/side effects/heart risks of each chemo regimen. I did not want any heart issues so i didn't even question her strong opinion of me going for the TCh. I had no side effects from the herceptin (aside from the drippy nose which i now know is from the herceptin) I am happy with my choice and totally feel like it was the right now. I know someone personally who was diagnosed just 6 weeks before me who went the other route.
The chemo itself gives side effects for up to a week. I find I am good the first few days right after and then it hits. I am fatigued and generally achy and flu like feeling. The day after that by the afternoon I start to pick up again. The taste buds being off ( and smell ick) is so annoying. I really like food and well nothing tastes or smells as it should half the time. But that too passes. I also suffer from constipation right after infusion and take colace for that which works fine. I just cannot wait for the chemo part to be over. I will be having a mastectomy in late April or early May. I am nervous about it but I just want to get this behind me!!!!!
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Kimbly -- Congratulations on being almost done. I'm sure that's a great feeling!
Erica -- If you find that water ends up tasting funny, you can use most clear or light liquids to get the same effect. Coffee, tea and cola are not the best choices, because they have a bit of a diuretic effect which defeats the purpose, but clear broth, fruit juices, Sprite or ginger ale, milk, etc. are good. Also, if you can tolerate water rich fruits like watermelon, grapes, berries and so on, you don't need to drink as much because you are getting it in your food. These meds can cause diarrhea, so you may have to be careful on the fresh fruits the first week. However, I find that all the pre-meds cause constipation, so I go heavy on fiber while I'm taking Decadron and switch to more "binding" food a few days after treatment. You'll see what works for you after the first round and can adjust accordingly for future ones.
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Kimbly, congrats on being near the home stretch. I know you are looking forward to getting off these drugs and getting your life back to normal. Cathy, thanks for the tips on fruit and liquids, I'll keep it in mind. Anyone else taking fish oil? I was just looking at my prescriptions and see Warfarin prescribed in 1 mg tablet to prevent clotting of the portacath. I'm going to check and see if I can forgo this as my fish oil is an excellent blood thinner and has other benefits as well. I don't want to do both as it is too risky. I'd like to avoid the Warfarin (rat poison) if I can...albeit is it a very low dose which should be safe...I still much prefer the fish oil and wondering why the doctor didn't flag this because of the known interactions.
Continued thanks for your thoughts and wisdom.... -
I'm at a loss to what chemo to get. One oncologist said ACTH and the other said TCH. My tumor was about 1.3 cm and I had two out of four lymph nodes positive (stage IIA). I'm ER+/PR+ and HER-2/neu positive. Has anyone had TCH? It's seems like a newer treatment. I don't want any treatment that hasn't been established. Please let me know as I have to decide by this week.
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Sushi2,
You are right behind me, I start my first treatment tomorrow. I would say that AC-TH is the more established treatment and there are more stats behind it. My oncol just told me that is what I would get. I researched a lot and hoped he would support me with TCH which he did. That said I think TCH is quickly being established as more and more women are either opting for it or their oncols are putting them on it. So only time will tell how it compares with AC-TH over the long term. There is data now to show it is about as effective depending on what study you look at and there is less risk to the heart and with some other aspects as well. I don't think anyone would feel comfortable telling you which is the right path for you (other than your oncologist). Of the two doctors you consulted with do you have more confidence in one versus the other? This is important because you will be having a long term relationship with your oncologist. My oncologist says I need to think of him as my all around doctor now--I won't be going back to my family doctor for quite awhile. I don't think there is anyway around you doing the research for yourself as a sanity check. I'm not sure but I think your hormone positive factors may be in your favor because it provides another means of attack. If you are not real confident with either doctor you consulted do you have time for a third opinion?
Back to the others--for those of you with portacaths, are you taking low-dose Warfarin (Coumadin)??? I'm anxious to know...sorry to be a nag...
Tomorrow will be a tiring day for me...first surgery, then my 1st treatment which they tell me will run around 4 hours....
My best hopes for everyone. -
ERICA2,
Thanks for your advice. Good luck with your first treatment. I was kind of siding with ACTH because it's more established. I'm just worried about the side effects to the heart. The oncologist that wants to go that route is not that easy to talk to. He told me he's not warm and fuzzy, but he's smart and will get me better if I listen to him. I was thinking of getting a third opinion, but it's already been about a month since my lumpectomy and I don't want to postpone the chemo any longer. All of this is so stressfull as you know. How are we the patients supposed to make these decisions?
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Hi sushi2 - I am doing TCH. Two oncologists (both from large university hospitals) recommended it for me. A third oncologist (who is in provate practice) recommended ACTH. As you know, ACTH has more research and data behind it. There is only one large study which supports the two treatments being almost equal in efficacy. It is the BCIRG-006 study headed by Dr. Dennis Slamon (easy to find info on it by googling it.) The oncologist I chose to do treatment with (one of the two university doctors) told me that the BCIRG-006 study is a large, well-designed study and that she is absolutely confident in the use of TCH. Even then, I agonized over the decision. In the end, my stomach told me to choose TCH and that's what I did. There is a history of heart problems in my family so that tipped the scales a bit in favor of TCH.
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Hi Erica - yes, I am taking 1mg of Coumadin daily. Portacath is working fine.
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Sushi -- If you are being given an option, you just need to go with your gut. It's important that you feel confident in whatever you decide so you don't waste energy second guessing yourself. As others have said, ACT has the longer history, but I opted for TCH because of a family history of heart problems. I felt I would be more upset living the rest of my life with a heart problem than having a slightly higher risk of recurrence. Also, in my case where I am ER/PR-, I felt it was important to be able to have herceptin since that was the key treatment for me. If I had heart problems from the adriamycin it can mean delaying or even preventing herceptin from being used. However, everyone is different and what was the right decision for me, may not be the right one for you.
Erica -- I'm not taking anything to keep the blood thin for the portacath and it's been working fine so far. I think they inject something at the end of treatment to clear it out, but I'm not on any daily medication.
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Erica - I just realized I never addressed your comment about the Ativan. Yes, I have a prescription for it to be used as needed for nausea. It is interesting to know that your onc actually prescribed it for bedtime use the three days around chemo. Let us know how that works for you.
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I was put on coumadin by my surgeon after my port was installed. My onc immediately took me off of it (*smile*). Said she just hasn't seen enough problems to warrent being on coumadin.
I was on TCH and didn't lose all my hair. It just thinned a LOT. See before/after pics here:
http://mysite.verizon.net/wb9zph/hair
My onc gave me ativan (for 'breakthrough nausea') and compazine for nightly nausea for first 5 days of chemo. And one other... zophram for first 3 or 4 days (morning) as well. NEVER had a problem with nausea.
The taste problems were the worst for me. I was fine the first 3-4 days after my treatment. Days 5-10 (normally) I felt like I cleaned up the Dallas sewers with my tongue (sorry for being so disgusting) (*laugh*). Well, it was a year ago. It's MUCH easier to smile about it now. Biotene mouthwash was my FRIEND. I went through an entire bottle every chemo cycle.
Good luck everyone!!!
Janet
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Thanks for all the tips on meds. It helps to know what you have tried that has worked as there are so many meds that it is initially so overwhelming.
I got through today, both protacath and treatment. So glad to have my first treatment over with. I am very tired and think I will sleep well tonite.
Thanks for being here... -
Hi Janet - thanks for posting here. It's great to hear from someone who has completed the cycle and is down the road a bit. My surgeon prescribed the coumadin for me also, and my onc said it's probably not necessary but wouldn't hurt so she left it. I also have the same trio of nausea meds (plus Emend) and they work fine. I just completed my third TCH cycle and must say that I had more difficulty this time than the first two. Did you notice that the SE's got worse as you progressed through the cycles? I just saw another thread on this board about taxotere being responsible for some hair loss being permanent. Did your onc talk about that with you? I'm glad you're doing well!
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I have a mediport and no coumadin but they do flush my port with heperin each time after chemo to keep it clean. I was prescribed comp. and ativan for nausea as well. I found the ativan made me way too sleepy so i quit taking it at all. The compazine works fine and I take it 2x a day right after chemo for a few days. I like the description of licking up sewer taste thing LOL .. exactly is all I can say! I did buy tht biotene mouthwash but havent used it much yet.
OMG I hope the taxotere doesnt cause perm. hair loss eeek. LOL
I didnt lose all my hair either but shaved it cuz it looked so scraggy. I have hair now about 1 inch long..
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Hi kimbly ... has your hair started coming back even before the end of chemo? I expected not to see anything until a month or more after chemo ends. You're so close to finishing ... congratulations!!!
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