Anyone on just Taxotere and Cytoxan?
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Cindy, My Onc and NP said the same thing about SE's/morale towards the end of chemo too. I told them that in my experience what happens is you feel really good and normal before the first round, so you really notice it when you feel like crap afterwards. Then each round you get hit a little more and recuperate a little less so there is less room to "fall" after each round, and you don't notice the change from feel good to crappy as much. Also, in my case I told them that at the beginning I believed them when they said that they could use meds to help me make the SE's tolerable, so I was anxious heading into rounds about them adjusting things so "this round won't be as bad", but by the end I accepted the fact they weren't going to be able to do a thing to make it tolerable and I just had to suffer through it and to just order it and get it over with already. So, it wasn't that it was better, they just perceived it as better because my attitude changed.
They were a bit shocked at first, but conceded there was a bit of truth to what I was saying. Sorry, but your onc insinuating that things get better because we deal with them better hit a nerve. Probably because now that I'm done and asking about when the SE's they assured me would go back to normal or "never seen it happen" would reverse themselves, they don't seem so sure that things will go back to normal. Although appreciative of the fact that chemo is supposed to be improving my chances of not recurring, I think the reaction to these drugs, and long term effects are often swept under the rug a bit on their part and we lose track of it in the initial fear of this diagnosis and our anxiety to secure what treatment and hope that we can.
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Hello Jewels-- on 4 vs 6 -- (I'm getting 6).
My oncologist and I had a long discussion about 4 vs. 6. It's clearly my oncotype of 29 and Grade 3 status, in that order that drove the number of TC he recommended. My ER is mid-way positive and my PR is right on the line.... so I'm thinking the effect I get from hormone blockers might not be as dramatic in decreasing my risk as it would if my ER-PR where higher (which likely had an effect on my high score of 29) My Her2 was very low (thankfully, or my score might have been even higher) There is a study in progress, yet unpublished that is using the oncotype as a detemination of number of cycles - low intermediate would get 4, high intermediate would get 6 , high would get 8 and very high would get adriamycin added to the mix. Because this is a study in progress, there are no results yet --- they haven't hit the 5 year out comparisons yet, and there are no early conclusions being made yet.
My oncologist talked about the the fact that many oncologists who have been in practice a long time still use AC, because they know it works, and despite the vast research that TC is equal if not better, they stay with what they know. (He says all the "young guys" just out of school are only using TC.) I feel good that mine is current and is sensitive to the long range effects of A on the heart - he said long range mortality in early stage bc will more likely be due to heart disease from A than recurence of bc.
He also went on to explain that when they started treating bc (in the early 80s)with adjuvant chemo, AC was given in fairly high doses for 12 months, and as time and studies went on, they slowly decreased dose and time to 4 cycles as a standard of care - huge difference in long term SEs. Then in the mid 2000s the research showed superior results with TC over AC ---- now the trick is guessing how many cycles with the new diagnostic tools eg. oncotypeDX. He believes 4TC is superior to 4AC - he also worries about the quick onset of my bc and agressive nature and mostly the oncotype. He says, the current standard of care is 4, and........I'm handling the treatment well, I'm young, and if the research results shows that 6 is the standard of care based on my score, I will have just that much more reassurance. Makes sense.
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Welcome all you new ladies. Glad you found this thread.
Suzanne, I think the main difference between 4 and 6 rounds is the oncs preference. Altho my onc was going to be happy with 4 rounds for me till he saw my oncotype test. Then he said 6. I do know some oncs feel that 6 is over treatment. But like I said before, I don't ever want to regret not doing something to beat this devil.
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Yes...that makes a lot of sense to me. It also reinforces many of the things my onc told me.....of course my chemo brain is a bit fuzzy. Mine is an older Dr. with over 30 years in Oncology, however he is head researcher in the region. so he is always giving me very current info..so it seems like he is on the same path as others.. I know many people go for several opinions...I never did. I think in my personal case.....since I am grade 2 and I decided to remove my ovaries to cut off the estrogen source 4 must have been enough.
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Hi Firni, I am also living in Denver and I am being treated by RMCC my onc specializes in breast cancer but, I am so confused by the 4 vs. the 6 tx of tc my head is spinning. My oncotype was 35 and if that was not scary enough she recommended 4 tx with 6 weeks of radiation. Hopefully that will be enough. I also had isolated cells in one of my sentinel nodes but it still left me node neg????
My onc said that a port would not be needed for the 4 tx. I am not sure about that as well. I have tiny veins and they seem to roll as well. Can I have the IV's in both arms if I have had the SNB in one of them? Can they use small needles for the IV's and the blood draws? Also, can they possibly numb the areas that the needles will be going in to?
Thanks for your help.
Pam
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Hi Pam, Which center are you going to? I go to RMCC in Thornton. I had micro mets in one sentinel node as well. Both my BS and Onc. said that doesn't count towards node involvement. Let me see if my chemo brain can remember what Onc said about it. That it's just a recent technology that allows the labs to see the micro mets. There is no indication that doing something about it makes any difference in survival or recurrence. If there is full node involvement, they recommend a full axillary dissection. Or if the micro met is over 2 mm in size. Otherwise the chemo will just kill it anyway. I believe Taxotere is given for node pos and neg, so either way I felt like I was covered.
You do not want to have IVs on your surgery (node) side. Lymphedema, you know. Also the smaller the IV needles, the slower the drip, the longer it will take for your infusions. Tell your onc you have bad veins already and you want a port. While not real comfortable, I am soooo glad I had mine. I'm sure they can numb the IV site for you. They always numbed my port for me.
Wow, 35 is a high score.
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Boy, now you really made me worry about my onco score (not that I wasn't worried anyway). What was your score if you don't mind sharing?
I am going to the center that is at Rose and Sky Ridge Hospitals. I still can not wrap my head around having a port. Maybe I will change my mind after the 1st tx.
Also, it really drives me crazy, not that I am not that way already, about the 4 vs the 6 treatments. I wish someone had a definitive answer on that one.
Thanks for getting back to me. By the way, just how bad has your treatments been? I am really dreading this entire "bump in the road".
Pam
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My score was 28 and my onc freaked out. I guess because my stats don't look that bad.
Tx 1-4 were not that bad. Each Tx I would get some weird thing like hand/foot syndrome or neuropathy. But it would only be for one tx. Then something different for the next. I never had any nausea, but I did take my Compazine for 3 days after as directed. After Tx 4 is when my nail beds started letting go, my muscles became very weak, neuropathy came back big time in my feet, problems with edema, rashes, food tastes never came back. 5 and 6 about killed me especially 6. By far the worst. SEs do seem to be cumulative. Be glad you're doing the 4 and not 6. I'm not doing rads, so with you doing that after chemo, I would think that would be plenty. But everyone is different. I do know people who for them, chemo was just a little bump.
What kind of surgery did you have? I had bi-lat. mx with expanders.
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I had a lumpectomy on 2/26 followed by a re-excision on 3/12 to get clear margins. Second surgery was worse than the 1st. Go figure.
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Hi ladies....
Catching up on the posts...
Pamelamont...I have a port and don't regret it...the injections have been so much easier. Between the labs that they get my arms I have been poked more than I want to be poked in a lifetime. It is your decision but I think you will be pleased with the port CVC.
kt57 ...agree with what your doc says...and mine the same..the results from the old way of chemo have be substantiated whereas the new way of TC x 4,6 8 have only been researched for the last 10 years but have shown only results from recent. He says they appear to be the same and they think works just as good. ...I am for whatever works...
kmmd...please do not think that I take SEs lightly...My onco was very concerned when he discussed with me the Adjuvent Therapy and what I would have to go through in the next 6 months. I am very concerned about having chemo or any drugs inside of me. Before this I never had a pill in me...even tried to stay away from aspirin. Although took the damn hormone meds for a year went I went through MENOPAUSE which I truly believe caused by BC...damn hormones. I stopped after a year when the news came out about heart issues with taking hormones. Bad family heart genes. Anyway...I do know that we will have this stuff in us for our lifetimes...and nothing but concerns for long term effects down the road. We can only hope what we do today (Adjuvant therapy) will work and keep the cancer away for good. We need to try everything possible and be positive in the results.
I went and got my $4k Nuelasta shot today..I mentioned to my doc that my face felt red and flushed he said it was from the chemo...that was a first for me... I also asked if I could be in the sun and he said NO...to wait about a week and not to be in the sun from 11 to 2...the sun gives a bad reaction to chemo. I love the outdoors so it will be hard for me until after my chemo is done...it's such a beautiful day today...
Have a great weekend ladies....
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Hi all, Just weighing in here. My veins are not good; they roll. I have completed 4 treatments and have thanked my surgeon each time for having the foresight to put in this port when I had my bilateral mastectomy. Due to size of tumor, it was apparent to her chemo would happen. I have had no problems with the port and it's been in since Nov. 17. Since I had the SNB, I am restricted to having blood taken from one arm only. Since I go weekly for bloodwork (mostly 2 vials but sometimes 3), I arrived at the Quest clinic announcing my terrible veins and requested only the best and most gentle tech in the group and thankfully Carmen stepped forward. Again, I am totally thankful for my port and for my special tech--- especially since the original plan (4 T/C's) was changed to 6 (supposedly since I was tolerating the treatments so well). Hey, it has not been terrible and like so many others I do want to do NOW whatever is possible so here I am. By the way, my oncotype score was 27. Just as everybody reacts to the same treatment in different ways, decisions about how to go about the treatment vary. Best wishes to each and every one of you....
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I had my first of six last Monday and I'm go glad I have the port. It made it so much easier, one stick and didn't have to worry about them finding a vein in the one arm available. So far, I've done pretty good. Face was flushed the next day but by day 3-5 felt tired by end of day depending on how much I had done. Got sore throat and tingling in the mouth around day 4 was so afraid it was mouth sores already but called and they said it was too early for those yet and so far none have shown up. Joint pain has already kicked in with knees and leg aches. But overall, doing good so far! The more I read the info, the more I know it won't last. Got two more weeks before the next treatment and will just have to wait and see what kicks in next. Doing what has to be done and getting it taken care of.
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Any one having troubles with the Dexamethasone 4 MG. I have to take 1 Tablet by mouth every 12 hours for 5 doses. This will be the normal cycle after each round of chemo treatments for me. I find that since I started taking this drug, I have terrible sleeping at night I believe due to this drug. I wake every 1/2 hour all night long in a full body chill which isn't cold really but rather has me soaked clear to the bones. My pillows and such are dripping wet. Because I am having severe stomach pain during the night I am up and down going to the bathroom. I have no fever at all and its actually staying on the lower side which is normal for me. I feel like all of these trips to the bathroom is preventing me from sleeping, and the restlessness. Each stop into the bathroom is like I hadn't went to the bathroom all day when in reality i have so many times... by going so much its hard to keep up the fluid intake so I don't dehydrate on top of it all. My face is flushed bad during these evening spells. My balance is way off only during the night time. If this is just a side effect of this drug then thank goodness I will be off of it until next round of chemo and maybe with some pure luck can sleep and not feel like I am a caged animal heading to the bathroom every half an hour. Any suggestions ladies? I hadn't really had any problems until I had to start taking this welcomed drug. Took the last one this morning for the 5 day spell so hope it on to better nights. Suggestions?
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Hi Nadine, Your sleeplessness and restlessness and going to the bathroom all the time is most certainly from the steroid. I'm sure other women will chime in here. I just dealt with it as it was only for three nights. I was able to nap during the day. I know some women got sleep aides from their oncs. Some women took advantage of all the excess energy and did some extra cleaning and such. If this is really disturbing to you, call your onc and get something to help you sleep during those nights.
Cat, Glad you're doing ok so far. Be sure to take any pain meds or what ever that your onc has approved. If you keep ahead of the SEs they don't get as bad. I tried to keep extra drugs out of my body the first few Txs. But then I figured why suffer to be noble? No point. Do what you need to in order to stay as comfortable as you can.
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Nadine: Ditto for me -- blast furnace hot flashes I call them! I get Dex 4mg twice a day: day before, day of and day after chemo. I start taking ativan 0.5mg the evening of the first dose and every 6 hours through Day 4 - helps to counteract the hyperactivity. I am able to sleep since I started this routine.... am up for bathroom breaks every couple of hours those first few days - that has alot to do with pushing fluids and staying hydrated.0
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Hi ladies...
Cat1...good news on your first session. I am sure you have researched all the SEs that we experience. The face flushing is caused by the steroids that they gave you. You will have dry mouth for a few days - keep hydrated and what helps is Popsicles or something cooling. Just watch for a fever and chills - which are typical. Call your doc if they are above 100.5...Can't wait to hear how your next session goes...
Nadine54...sorry I have not been given your dose. Hopefully someone else has and can help you..How many chemo sessions have you had? I am on #5 and had diarreah with #3 and #4 and now constipation. DRINKING FLUIDS help....
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I take Dexamethasone 4mg twice a day for 3 days, prior to, day of and day following chemo. I feel restless and hyperactive, at times a little agitated; I simply could not sleep those 3 nights and was exhausted by day 4 of my first chemo. Second time around (last week) I took Ativan 1mg each night and was able to sleep. Subsequent nights after chemo when I am having a difficult time and cannot rest I take .5 mg to help with sleep. I typically do not take a lot of meds, but I am not willing to sacrifice sleep and rest for my body just to prove I can do this without one more medication. I have needed Miralax for very bad constipation in the first 3-4 days, and I am now using both magic mouthwash and mycelex lozenges to deal with thrush. I was surprised at how painful the thrush can be! I have focused on staying hydrated and eating very small meals, and I have allowed myself to get naps and as much down time as I can to deal with the fatigue. This time I had a bit easier experience since I took neulasta on Day 2. Don't feel guilty if you need to take extra meds or extra time for yourself in order to cope with this chemo experience!
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suzmarks here again. I find it interesting that our oncs are prescribing the Dexamethasone differently. I take 16 mg a day, 8 in the am and 8 in the pm before and after my chemo infusion. Also I get it in a bag during my infusion, not sure of how much. On Wed. I have tx number 4. I got thrush on my last tx and noticed that tx 3 was the worst. Tx 2 was pretty easy. I guess with the Nueslasta, Dexamethasone, and the TC, the SE from tx to tx vary a lot. I also found that I was really not enjoying water a week after tx last time. I ended up drinking seltzer water which I never used to enjoy too much. Regular water just started tasting too tin-like. Now I'm fine with it but expect to get that unpleasant taste back so I stocked up on seltzer.
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Hi Ladies...
Suzanne....do you find the carbonation irritates your throat? I can't seem to drink anything carbonated. I drink crystal light ice tea with a splash of cran-raspberry. It helps in between the plain water drinks.
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Hi, ladies. I've been finding my sense of smell is greatly affected - I can't stand things that used to be very pleasing - like Plug Ins and stuff. Had to unplug all of them! I can tolerate some carbonation, but not like I used to. Been craving apple juice, grape juice, water. Haven't tried iced tea yet, but hot tea is okay.
Cruise4Life - you are so lucky - only one more to go!! You are doing great with all of your help and input too - thanks so much!
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Chelev...do you find that when you wake up in the morning your mouth is coated with plaque or film? It all has to do with taste buds and smell...I find things very offensive too..and cigarette smoke from people is the worse...
Try some skinny cow ice pops they are creamy and chocolaty....
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I drink spearmint flavored water (Metromint). I also like hot ginger tea, but I am careful about tea intake (even though I drink decaff). Too much seems to upset my stomach. Green Tea, which I love, has started to taste weird to me. The ginger tea really helps with queasiness and downwright nausea, to the point that I don't need extra Zofran.I also drink a tangerine flavored Vit C drink once I am past the first 10 days or so; during that time I can hardly stand anything with citric acid in it. My sense of smell seems overly acute and I notice odors others don't. I also have really loud ringing in my ears starting around Day 3 and it lowers but does not go away significantly by the end of the cycle. Do you all have blurred vision? This seems to be an intermittent problem for me, or perhaps I especially notice it when I am working on my laptop.
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For those women who are experiencing SE's, here's a weird one - I'm not sure if it's related to the chemo, but since I've never had it before, I'm thinking it might be. Anyone hear or or have sort of a diaper-rash like experience? I had to go out and buy baby diaper cream to help with the itching and redness, which if I didn't put something on, I would have scratched myself silly! I'm going to call my Onc. tomorrow to ask about this, because I couldn't find any real reference material and it's definitely a weird one.
Cruise4Life - yes, I wake up with a very filmy mouth, and try to brush fairly soon afterwards, and I've started brushing at night as well. I didn't want anything sweet the first few days, but made a low-fat frozen limeade pie tonight and boy, that slice sure felt refreshing.
Brenda, I too have an increased ringing in the ears. I've had tinnitus, so I've always had a slight ringing, but yes, it's like the bells never stop now, and are loud! Also, my fingers seem tender at the tips, as does my scalp - it seems tender. Vision is the one thing that hasn't been affected. I couldn't go near anything citrusy the first few days, and now, it doesn't repulse me.
This is all sort of like some sort of science experiment! I'm so glad we all have each other to discuss things with and to bolster each other up - we are all fabulous women who will triumph this disease!!
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chelev - i've had the diaper rash thing too. but, mine was brought on by thrush. i've had thrush (including a white tongue) 2 cycles out of 5. i reco balmex or other diaper rash cream....cleared it up right away for me!
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Hi all,
I have been so interested in your discussions on TC vsAC and number of treatments. That was such new information about the younger new doctors who admitted using TC and the feeling that it was superior to AC. I am finised with 6 TC treatments and 36 radiation treatments and now on aremidex or can choose fosimex either one. Have you read the information from Dr. Stephen Jones who discovered AC and now speaks highly of TC unless you are her2 positive with the topul 2 subset, (that is f rom memory don't ask if propefly spelled) also Dr Dennis Slayman who discovered herceptin for advanced cancer for her2 positive women has a paper called " A Case to Scrap Anthryciclines" which is the A drug due to heart issues. I just feel bad for anyone taking AC in light of all we know. Even my doctor goes by the longer data saying we don't have enough data on TC, but TC was her second choice and my first so that is what I got. . I wonder where the new young doctors are getting their information. I would love to know. Thanks, Birdsong
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Birdsong,
I am being treated at UCLA....where Dr. Slayman is. My oncologist was trained by Dr. Slayman. For cancers like mine (ER+/PR+ Her2-) they now recommend T/C....not the old standard of AC.
My UCLA doc said that if I were to go to 10 oncologists for opinions, the majority would still say AC was what was needed. But, the tides are turning as there is no evidence that the "A" does anything for patients like me.
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I am on a clinic trial where I had a 50/50 chance of being on TAC or TC. I was ambivalent about having the adriemycin but it's still used heavily here in the east so I decided to let the chips fall where they would. I am so very glad I didn't end up with the A. Even my clinical nurse has professed to it being suspect. She said she heard a young doctor out in CA say hadn't even heard of it, that it is virtually underheard of using it out there and judging from what some of you are saying it seems to be the case. I do feel bad reading about the SE some of the women are dealing with who do use it. About the water drinking situation;I basically don't like carbonated drinks and never went near seltzer but when the anti-water feeling kicks in and I need something with flavor and the seltzer with lemon or other fruits is good. I don't want to drink a lot of diet soda as it isn't the healthest beverage.I just bought some of the light waters like Smart Water as a change of pace. Tomorrow, I mean today I have TX 4. It's 4:02 AM and I think I'm blowing off sleep for the night as I have to get up for half a day of work before treatment. Since I took Dexmethazone today I can't say I'm tired.
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Hi everyone,
I had my first TC on 4/3. I was very glad when my Onc said no need for A after reading about all the horrible SE. I was leary because I am trip neg. but he said TC being proven just as effective and he is older. I sure hope he is right. My worst side effect has been horrible heartburn to the point I thought I was having a heart attack. Has anyone experienced this? They put me on Zantac and for the first time in 2 days I am not in excruciating pain. Knock on wood hope I didn't jinx myself. Funny you guys should mention the diaper rash I woke up in the middle of the night with terrible itching so I guess today will be getting some cream for that. My tongue is also very yucky they gave me the Miracle Mouthwash and it helps some but is most annoying. I am curious as to why some of us get 6 tx and some 4. I am scheduled for 4 and asked if that was enough(can't believe I said that) Onc told me I could do 6 if I really wanted to but he felt 4 was sufficient. Any input?
Brenda--I have noticed blurred vision at times especially on computer. A little scary hope it doesn't get worse.
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Hi Lisalisa,
Thanks for your informative reply. You hit the jackpot being treated by someone who has been under Dr Slayman. Do you have any information about which is better for post menoposal women: Aremidix or Fermera? Thanks for that input. Love, Birdsong
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Hi,
I'm on day 6 after my first TC and so far side effects are minimal -- minor nausea, dry nose & mouth, weird tastes, minor cold-like symptoms, headache, and tired. I found Oasis mouth spray to help get that metal taste/dry mouth out--seems to work okay (got that tip from these boards) and is easy to carry around. I like the Biotene mouthwash also. My doc didn't give me steroids except the day of tx (although he did give me benadryl preemptively because I was nervous about allergic reactions) so that may make some of my SEs different. But overall, MUCH more doable than I thought it would be. Do you know if the SEs tend to get much worse each time? I've seen that people have different reactions at different treatments. I imagine fatigue gets worse.
What have your docs given you to control nausea at home? I got compazine and ativan. Don't love the compazine, luckily I haven't had to use it much, and the Ativan is good for night time.
Thanks to everyone for posting all their symptoms -- it really is helpful to see the wide range of experiences.
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