Anyone on just Taxotere and Cytoxan?
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Hi Lou, your diagnosis is very close to mine. Just to let you know I haven't experienced any bone pain with my treatment so far - I think that comes with the Neulasta shot. That is one I don't have to do.
Do you also have to do radiation? If so, how many treatments of that?
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I want your treatment regimen! (OK "want" is a strong word.) I have my first meeting with Oncologist on Monday, Aug. 4. I have grade 1, < 1cm, ER+,PR+ IDC. KI-67 is a low 4%. It appears I'm destined for chemotherapy due to micromets in 1 node. After numerous hours of reading and study, TC is my treatment of choice. Is there anything I can do to steer my onc. toward this treatment? I obviously want to do what is best for my disease, but I'm afraid with the "positive node" he is going to push me toward TAC or other 6 month regimen.
Thanks in advance.
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samiam,
My Dx is the same as yours and I was put on 4 T/C every 21.
Enjoy the day, Karin
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Thanks Karin. I appreciate your input. I know I'm probably doing a bit too much "internet diagnosis" but this sounds like the treatment for me. (I'm still having a hard time accepting chemo at all, since everything but the "node thing" wss so favorable). One onc (phone consults with my surgeon) wants a 6 mo. regimen of AC > T ... the second suggests no chemo at all as it would be a small absolute benefit. Arrrrgghh ... as if we don't have enough to decisions to make.
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Hello to All !!
Ms Karin - Thank you for the Rads info !!!
Otter - If you're having lymphedema, I'm very sorry to hear that - I know that some hospitals offer Inpatient and Outpatient lymphedema programs to help manage the symptoms etc.(especially Rehab hospitals) - Also, some Outpatient physical therapy places do specialize in lymphedema treatment - I hope there are some close to you. I had lumpectomy and re-excision with SNB, so I don't know if I will eventually run into lymphedema problems . . . Best wishes to you with this . . .
Samiam - It was a family member who suggested I go for a second opinion about having chemo which was how the TC regimen was offered to me for treatment (first Onc. offered AC) - So sorry for your Dx and Best wishes to you with your final decision etc. . .
Hang in there Everyone !!
TC-Chickadee
DX 4/14/08, IDC, Lumpectomy/SNB, 1.7 cm, Stage1, Grade 2, 0/2 nodes, ER+/PR+, HER -
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Samiam - I am on my second oncologist - the first one really pushed TAC as the "standard of care", and but finally willing to give TC and said it was "effective". I objected to the adriamycin on the heart damage, etc. grounds plus it seemed so much more toxic generally plus nausea causing. We parted company through what I thought was a refusal to give me any more information and just generally lack of attention.
My current oncologist upon hearing my adriamycin doubts, just naturally went on to TC I think, and suggested 4 cycles, not the 6 that the first one did, which I was glad to hear. I just had my third tx today (thanks, Otter, for remembering me; I do my last one on August 21). You can see my dx at the bottom of this entry, and although I had a small tumor and would have been stage 1 I immediately went to stage IIIA with the nodes. So if my oncs would give the TC for this amount of node involvement I think you are quite safe with it without having to go the adriamycin route. There are studies that say that A is not even as effective as TC for most of us. In your position I would refuse the A if that is also your concern.
Also, Otter, I have the same underarm-back of arm and into the back fullness and swelling that I don't know what it will turn into... When I wear a particularly tight undergarment (I can wear a non-underwire regular bra) I do notice that the swelling on the side under the arm goes down a bit. But the swelling increases a lot when on the tx.
Marilyn
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Samiam,
The research news section of this board has a lot of information about treatment options and several articles discuss T-C. I sent one of these to a friend who is using it to fight Kaiser to get T-C instead of Adriamicin.
Check it out:
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hey samiam ,
It sounds like we are in a similar situation.I had my surgery in March and my lump was 1.2 cm with 1 node positive with a micromet.I have not started any chemo, as of yet.I have had three opinions.One of the doctors told me it was up to me, the other said to get an Onco Type DX test and the third is urging me to begin chemo asap.I am scared and do not want to.I did tell them to move forward with getting authorizations for the port-cath but can't stop thinking about it and can't sleep at night because I am worried.
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I finished my 4th and last tx of TC on July 9 and experienced the same problems (extreme rigors, fever ending with stays in the hospital) as with tx #3. My onc finally decided that my medi-port had a latent infection that was causing the problems. I had my port removed on July 11 (my white count was 36,600) and spent a few days in the hospital on antibiotics by IV. I've done some research on pre-filled heparin syringes (I became immediately violently ill after my port was flushed during the last 2 txs and during my stay in the hospital). My research has pulled up the fact that some of these pre-filled heparin syringes are being manufacted in China and may be contaminated.
I have felt so much better since my port removal. Am wondering if anyone else has had this type of problem.
It is great to be through with my chemo and I pray that everyone going through this can complete their txs without too many SEs.
Otter, thank you for keeping track of everyone's chemo schedule. You are a true blessing to us all.
God bless!
Genie
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LPJ, best of luck as you make your decision. As you have found, the experts do not agree. In my case, my onc said I would not need chemo because I had a small cancer and no nodes, but I asked for the oncotype test. Due to office snafus, I didn't get the results for over two months, then it was surprisingly high. The onc said tx was not mandatory, "my choice," and a second onc said he wouldn't recommend tx, but I decided to go for that small chance that it might prevent metastatic disease. The upshot is that I started tx 6 months after my initial dx, and my current onc said that since the cancer had probably been brewing for years if not decades, a few weeks or months delay would not be an issue.
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Started my first round of Taxotere and Cytoxan today...still not feeling bad as of yet...hope it stays this way...the chemo I rcieved 5 years ago had me over the bucket every 15 minutes, so this is quite an improvement....keeping my fingers crossed that it will stay this way....I have been reading a lot of your posts and got a lot of info...Thank you so much for sharing.....someone wrote something about some oil to use on the fingernails to prevent cracking and them falling out..does anyone remember what that was??
Thank you all
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I think it was tea tree oil or something similar?
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Tea tree oil, and the nurse gives me ive to soak mine in while they are doing the tx.
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Hi all - I check in and read the posts every once in awhile. I finish chemo 30 Apr and rads 2 Jul. My onc went with TC instead of AC b/c I am young and healthy and he didn't want me to get any heart issues...I also have MVP, and a strong fam hx for heart disease. Heck I never thought about getting cancer, only tried to prevent heart disease. Oh well! This week I had a mammogram on the right, and all was good! I saw onc yesterday, and he wants me to start tamox in 2 weeks, he likes his pts to be 6 weeks out of all treatments.
Otter - I still have some issues with arm and chest feeling full, I have the sleeves, etc, but found them difficult to wear during rads as they rubbed, and it feels like it is more in my breast than arm, the arm is just numb.
My latest is that they think I may have shingles....I had some back pain and a rash ( I still think it is bites), was also sicker than ANY chemo day on wednesday. I see the surgeon on Monday and then stop by onc for them to have another look!
For all you going through this, yes there is an end and I do feel pretty normal - even like my very short hair - even if it is gray! I am thankful there is treatment for us! Also ports are great, and I would recommend it to anyone. The surgeon will decide about my removal on Monday. Hang in there all, just take it day by day. On this side, I don't know where the last 7 months went, and you do forget about the treatment specifics once it is over. Keep smiling and try to keep moving, it helps.
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Glad I found this thread. Still feel very much like a newbie. Had my first of 4 treatments on Thursday ( the 30th ) with surprisingly few negative side effects. Overwhelming flushing of both my face and breast and some fatigue which I thought was from the lack of sleep from the Decadron. Can some of the ickier side effects ( joint pain, thrush, nausea ) hit at any time after treatment, or is it usually closer to when you actually have the treatment? Like Sharon S, I'm ( relatively ) young with a very strong family history of heart disease so TC seemed like the only safe way to go. I'm sure I'll be checking here on a regular basis. Now I just have to find a cool avatar!
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Thanks all! I really appreciate all of your insight. I'm going to push for Oncotype testing even though the "party line" is that I'm not eligible (node positive/pre-menopausal). Even though I'd rather not have to deal with chemo and its SE's, from reading your posts, I know it is doable. If it gives me a reasonable benefit, I'll ask "Where do I sign up?"
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Hi again everyone,
Back with another question: How many of you got a port (or PICC line, etc.) for TC?
I just got back from my second opinion in Boston (I live in Vermont) -- very good appt in general, but naturally this onc feels differently about which (if any) chemo is best than my current onc does -- otherwise it would be too easy, right? He (the Boston onc) recommends AC every 21 days x 4, as opposed to my Vermont onc's recommendation of TC on the same schedule. Boston onc feels that TC is probably equivalent to AC in terms of efficacy, but has a so much shorter track record that they prefer AC in the absence of risk factors for heart failure.
So I'm back to pondering (in between hoping like hell I don't have to make this decision because my Oncotype is going to come back low-low-low!), and the port question is one I haven't been able to easily answer. I have this *idea* that TC almost never requires a port and AC almost always does... question for my onc of course, but it's bugging me and I'd love to hear your experiences.
As always, thank you thank you!
Best,
Drea
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Drea, like everything else with BC, the decision about a port depends on your onco and somewhat on the hospital's preferences.
My onco said that, with just 4 treatments of TC, and my very good veins, she would not recommend a port. She, and another onco I talked with earlier that month, both said ports (or PICC lines, or any indwelling venous access device) posed a risk of clots and infections that just wasn't worth it with only 4 treatments.
The chemo nurses at my infusion center (an NCI-designated "Comprehensive Cancer Center") never had any trouble starting my i.v.'s. I asked one of them how many chemo patients at that center had ports, versus receiving their chemo through peripheral veins. She said it was hospital-specific: at the hospital where she used to work, the oncos really preferred ports; so almost all the patients had ports. At the hospital where I was being treated, it was the other way around--the oncos did not like to use ports unless absolutely necessary, so about 2/3 of the chemo patients got their infusions through hand veins. Because of that preference, the chemo nurses at my center got lots of practice and were very good at inserting i.v. catheters into veins.
TX66, that was tea tree oil I think. I didn't put anything on my nails, and they seem to have held up fine. I did get horizontal white lines in all my fingernails (not toenails, for some reason). There's one line for each of my 4 chemo tx's. I don't know what will happen as the nails grow out and the white lines get near the cut edge. Otherwise, though, there was no discoloration or flaking or detachment. I should note that I never use nail polish, and I kept my nails trimmed really short during chemo so there wasn't anything to get bumped or snagged.
kwoodson, for me, the worst of the SE's were usually during the first week or 10 days after each infusion. After that, the only problems I had were in rounds #3 and 4 when I did develop a fever (> 100.4) around day 10 or 12, and was put on antibiotics for a week.
As awful as some of you feel, you will get through this and will soon be feeling almost normal again. Chemo goes more quickly than I ever thought it would.
otter
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THank you for the info..I will try to find some tea tree oil and use it just incase. I am on day two and still feel pretty good...my face is a little flushed and so is the right breas that had radiation treatment 5 1/2 years ago, but other than these dang hotflashes I am good. Hope it stays this way. THank you so much for all the info you guys are giving. I hope that in someway I can help people also.
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Drea - I, too, had an onc that said as long as I had good veins, no need to go with a port for 4 TX of TC. Infusion sticks were on the back of my hand and uneventful. Did have to have the additional sticks for blood work in between TX. Worked well for me.
TX66 - I used a nail strengthener during chemo and had no really weitrd things happen to them. Did have some faint horizontal lines associated with each Tx. My last chemo Tx was 4/30 and I finished radiation on 7/10. Interestingly, in the past two weeks I have noticed a series of white specs have appeared toward the top (cut) end of several of the nails. Not sure what that's about - perhaps just some dry spots. Key is that I never lost any of the nails or ahd them turn weird colors.
Joan
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It's Monday, and once again I didn't get the weekly schedule posted until after some of you headed for chemo camp. I am going to have to ask someone else to take over the schedule thing, I guess, especially now that my dh and I have started doing some traveling again.
OK, here is this week's group:
Mon., Aug. 4: KLG (#2), Young79 (#2 of 6)
Tues., Aug. 5: pmwelser (#4-done!), texasmom (#4 of 6), Kim1965 (#2), sherri38 (#2), MariaG (#1)
Wed., Aug. 6: catlover44 (#4 of 6)
Thurs., Aug. 7: RJ62 (#6-done!), sloritz (#3), CaliforniaRN (#2), gk2bc0 (#2)
Fri., Aug. 8: wdornan (#4 of 6), LizC (AC #4-done!), chloecat (#3), terridwo (#3)
Some of the women I've listed above are not posting on the Taxotere/Cytoxan board, but instead are hanging out on the "month" threads (June, July, August).
If someone else wants to take over the schedule, just let me know. It's pretty easy--I just keep a spreadsheet in Word with everyone's name and treatment dates on it. Whenever I see a post by someone who says they're getting Taxotere & Cytoxan (or Taxotere/Cytoxan + Herceptin), I add it to the spreadsheet. I double-check the dates whenever someone mentions that she will be getting, or did get, an infusion on a particular date.
otter
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Well, today is day 6 since my wife's first (1 of 4) Taxotere/Cytoxan treatment. Other than one evening when she was a little fatigued and had a little hip pan, she has had no other side effects. She feels great and when I left this morning for work, she was in the middle of a vigorous workout. I know it's early, but I hope this is a good indication of how she will tolerate her treatment over the next 11 weeks.
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Otter,
I would be happy to pick up the ball and do the schedule for you. You've done an admirable job and it's time for you to move on!!!!
Regards,
Sandra
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Taking a poll on eyelashes and eyebrows.... did anyone NOT lose their brows and lashes on four treaments of TC?
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Kim - My brows thinned significantly but did not all go away. As for lashes, I lost some - mostly on the bottom lid but kept most of the rest. Brows were back to the point of needing to be waxed about 2 months after my last Tx.
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Kim, my lash & eyebrow fall-out is farther behind and more extreme than what Joan (Jisman) had.
I am 9 weeks past my last TC tx. My lower lashes have all been gone (every single hair) for about 2 wks. My upper lashes on my left eyelid are about half gone; the ones on my right eyelid are nearly all gone. I can't count them, but I'd estimate I have 8 eyelash hairs remaining on the right side. I lost 4 eyelash hairs on that side yesterday alone. My eyebrows were about half gone (mostly at the ends) as early as 6 wks after I finished TC. Now even the middle parts are patchy.
I've read that the eyelash and eyebrow hairs grow back really fast. Mine aren't growing back at all yet, as far as I can tell. My hair is light-colored, though, so maybe I just can't see the new hairs yet.
Sandra, that would be wonderful if you could take over the TC calendar. I'll send you a pm with the names and dates for the upcoming weeks--or maybe I should post them here, later this week? Then you could copy and paste them into a text file, once everybody has a chance to look at them and make corrections. Another option is for me to send you the Word file as an attachment to an email. My dh and I are leaving today to head back home, so I won't be on-line until late tomorrow night (in the motel room) if I get on at all tomorrow. I'll get back to you about all this as soon as I can.
otter
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on the eyelash, eyebrow thing....mine came out late, my eyebrows came back pretty fast, but seem to be thining again. One person I know told me hers fell out about 3 times, before they decided to stay. The eyelashes seem to be growing back much slower.
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I had 4 rounds of Taxotere/Cytoxan - finished on 2/26/08.
For me, the first 2 days were as if I had nothing done. But on the third day, I began to feel depressed. That lasted about 2-3 days and happened with each treatment. The dexamethodone given to reduce the chance of an allergic reaction caused me to lose sleep the first round and then I timed it better and had no problem. About day 3-5 I felt depressed -- that's from coming off the dex. The dex also caused my face to turn red (I am very fair skinned). That lasted several days, my eyes hurt from it as well. I also experienced a runny nose constantly and my eyes were so dry they wept most of the time while I was on treatments.
1st round -- had Montezuma's revenge - docs said it was a virus as my husband had it too. I took 2 lightweight nausea pills (I had the big guns on hand but never used them.) Extreme salt taste ...
2nd round - lost my hair (shaved it to around an inch), nails started turning funny colors, my white count bottomed out (less than 1 ... It think it was .06 when I entered the hospital and there spent 6 days. Salt taste horrible ... I could not drink water ... all I could tolerate were Boost, shakes, some grilled chicken. NOTHING tasted good ... beef made me gag. Then about the time I was to go for my next treatment -- I could taste food a bit more. My hands ... finger tips mainly were tingly and numb ... and so were my feet .... one toe was very numb.
3rd round - Neulasta shot the day after chemo, everything else the same ... salt taste became unbearable .... I could NOT drink water at all ... unless it was disguised with something ... like tea, etc. The Neulasta shot caused severe bone pain for 2-3 days, for me it was agony. Neuropathy had begun to rear its ugly head and my legs and calves were in pain and it was difficult to walk.
4th round - Neulasta shot and Aranesp (for red count). I really thought that I was dying because I was so weak ... I couldn't walk more than 3 ft without being winded. That was from my low red count.
Nails, hands - never fell off ... they did have a ridge for each treatment (chemo) - they grew out, I kept them short.
Nails, feet - most of those nails were also bruised looking. They too are growing out ... I lost my left big toe nail - it accidentally peeled off (I have been wearing sandals - it caught on a chair or something). It did not hurt! I have been keeping them short as well. My right big toe nail is about to do the same.
Hair -- has grown out about 2 inches now ... different color - went from blonde to charcoal and gray. Was straight and now is curly
) I had short thick hair prior to treatment. It thinned out -- I never lost it all -- my side burns stuck it out the longest (which was great for hats). Eyebrows - I lost all but a few stubborn ones ... I just use and eyebrown pencil to color them in.
Eyelashes - They thinned out as well ...
Leg hair - is growing back with a vengence .... poot! Personal hair falls out as well.
Urine - smelled like the chemo - drink lots of water/fluids to get that stuff out of your kidneys.
Body order - smelled the chemo coming out of my pores.
I stayed home from the 3rd day of treatment until my white cells began to regenerate ... I guess it was about 2 weeks out of a month.
5 months since my last treatments and I have an appetite, can taste everything again ... it all seems like a dream.
I did have 33 rounds of radiation ... it actually seemed to energize me .... until the 4th week when the burns came. I stayed about about 1 1/2 weeks so that I could tend to the wounds. I had no fatigue until after all the radiation was done. I have learned to pace myself ... rest when I need to.
I was told that chemo can stay in your body for as much as 1 year. And, I believe that, as I still smell that chemo smell occasionally. During my chemo treatment, I occasionally felt faint and I think that was because of my counts and also that I was dehydrated. I still have those spells - very rarely though - and usually I need to drink some water. Also, I have noticed a mild chemo brain issue ... the neuropathy still affects my legs ... when I have to climb stairs it is like I have to think about making my legs bend and move. I started a new program this morning which is designed to help chemo patients regain their strength. The exercise energized me and I have felt good all day.
Regarding nausea -- I never had a major problem other than those I mentioned - just a bit "urpy." During my radiation I noticed an "urpiness" the day of radiation. My arm never got stiff. I have had some elbow pain but am working through that.
The American Cancer Society provides wonderful information and phone support (24/7).
Chemo is hard but NOT impossible for most people. My t-shirt that my onco gave me says: Forget cancer, I survived chemo! It does become a memory. Hang in there!
Blessings,
Kay
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Day 11, since 1st TC (of 4), and so far, the only SE has been a funky tongue and slight change in taste buds. I'm hoping future treatments go as smoothly.
The only drawback has been that expander schedule has been delayed due to low neutrophil (1.7). Onc says this is expected, and has not ordered anything to boost the number. Still, I'm slightly paranoid about this, and was wondering if 1.7 is considered safe for returning to work, shopping, etc. I can't make heads or tails of the sites that explain the numbers. Will be discussing this with Onc tomorrow, but it's driving me nuts tonight.
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Otter,
It might be best if you sent me your data as a Word attachment to my email address, which is slortiz@yahoo.com
Thanks,
Sandra
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