Cytoxan Taxotere Chemo Ladies- February/March 2013
Comments
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Headeast- I knew from the beginning that I would be having 6 rounds of chemo. My breast cancer is a rare form of breast cancer--- the DCIS and IDC were found inside of a large cystic structure. Breast cancer like this occurs in less than 1% of all breast cancers. In addition, I participated in the Herceptin B-47 clinical trial and was randomized to receive the Herceptin. This clinical trial is one that is on going and either one gets the Herceptin or not; there is no placebo given. The chemo protocal under the clinical trial was for 6 rounds of chemo if one has the Cytoxan/Taxotere regimen. In addition, my medical case was taken before the hospital tumor board and the recommendation was for 6 rounds. My Ki-67 was much higher than yours and no node involvement. It is a good question to ask you oncologist about why 4 rounds and not 6 rounds.
As for the nail protection.... you may want to put the nail polish on so to help keep your nails strong. If you opt to put bandaids on, you may want to make sure that none of the sticky adhesive gets on the nails. You just don't want to loosen the nails. Glad you are watching for possible nail infection.
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Thank you, Melrose. I will ask him. My cancers were in two different quadrants of the breast, plus the macro metastasis in one lymph node.
I don't want to have cancer again, ever, and it is worrying me.
Other than that, my nails and my hair I am doing great. I am not having Neulasta shots so far and my third TC is in a week. My counts on the first TC were fine. Only WBTC was lower than the range, but still good at 4.3
SpecialK, do you have any comments about my 4TC instead of 6TC? I see you are very knowledgeable about all of this.
Any comments from everyone, warrior ladies would be appreciated.
I will put my nail polish right now!
Have a wonderful week with minimal SE!
Headeast -
Headeast, Most of the research for TC in ER+ cancers which are HER2-, has 4 treatments. I was looking at the John Hopkins website recently, where people send in questions, and they we clear that 4 is standard. That being said, there is currently a research study going on comparing TCx6 to AC+T for locally advanced cancers. My cancer was a little too small to qualify for that, but since my doctor is involved in the study, that is why he put me on TCx6... basically because it is what he is doing with more advanced patients. I want to be aggressive, but I want to be appropriate and not have side effects that take me out of work permanently, or lead to further complications down the line...it is a fine line. My tumor was very strong ER and PR positive. For me, I think having the oncotype number will help me decide. Once I have all of that information, we will make a decision. It is frustrating that there are not any easy answers! -
KBeee, thank you for your answer. My MO asked me if I wanted to be in a Adriamicin trial and also told me that the side effect could be heart issues, so I told him if the prognosis would increase and he told me it is a trial and that it could be 1%. For that percentage I don't feel I want to damage my heart, so I said no.
I will ask him about the six sessions though, because that was not mentioned, only four, just for my own peace of mind. I do know that everybody is different and like a friend, she had three cancers in two different quadrants and she said no to chemo and she is still fine, after more than a decade. She told me she is not worried, that she can always be hit by a car, die from something else, and that is true too.
We get so involved with this and trying to fix it, do whatever it takes to not to have it again, but who knows.
I just know I don't want to worry and stop living the day by day because I am worried about the future and if i have cancer again, etc. That won't be a way to live a food life...
I am taking this time to heal though, eating healthy and being careful in not adding too much to my stomach and liver that might hurt them more. They have enough with all the chemicals from the chemo.
Oh, I get a lot of compliments from my wigs. I got them in different colors and shapes.
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I had IDC 1.0 cm pr, er positive, her negative. bilat. mastectomy 5 weeks ago with tissue expanders and now 5 days ago exchanged to implants. I had the oncotype dx and it was really not much help. I am 46 and premenopausal and It is geared toward post menopausal women/ tested on that group and I ended up with a score of 21 which is low intermediate...so it was pretty much up to me to try chemo or not as they aren't sure if people in the intermediate range benefit from it...there is a tailor x study going currently to see but won't have that info. for years..the oncologist said it's just a tool and not too accurate unless postmenopausal and even then the numbers aren't exact.
I have elected to get the chemo TC 4 rounds/3 weeks apart since I was not in low risk group just in case....but had prayed for either definite high or low, and I just got more questions....
I have also seen 2 oncologists and one wants every test on earth and other is laid back and not a worrier (as I am) so he makes me feel better which I think is key to handling this as well.
Healing from expander to implant exchange and trying not to worry about chemo. coming... -
Audra, I am 43, and am premenopausal, which was why we went for chemo without worrying too much about the oncotype initially, since it is more geared towards postmenopausal women. I am in a similar situation as you. Though low intermediate is frustrating for decision making, after chemo, you will have known you've done all you could, and your chance of recurrence is slim. I am hoping to NOT have a high score. I think I would be stressed for years!
Headeast, When my MO chose 6, we did not know I was node negative; my appointment was 2 days after BMX, so realistically, I was still pretty drugged up when we made these decisions. I am glad to know that in a few weeks, I will have the oncotype score which will help me to know that we are using all of the tools possible to make sure the treatment is appropriate. At first he said that the oncotype is not used to determine which chemo regimen to use...just whether or not to do chemo, but at that first appointment, he said if it was high, I would qualify for the trial...which meant it was determining a chemo regimen. He saw my point, which is why he now ordered it...and then said he thought it was very appropriate. I am like you. I want to do all I can now to make sure it does not come back. I also did not want the adriamycin because I have a heart murmur and did not want any further heart risk. I would not have gone for the trial forthat reason. I believe that trial uses 6 because the tumors must be considered locally advanced to qualify. The 6 vs 4 would definitely be a good question for your MO. When 4 AC was compared to 6 AC years ago, more was not better. There was more recurrence and also lower survival at 10 years for the 6 AC group. AC and TCare very different, but that still does bring home that at some point there is added risk, but no more benefit with all of these drugs ...wouldn't it be nice if we all knew where this point is where risk benefit goes the other way?!?! -
Thank you, Kbeee for your input.
I will ask to do the oncotype as well. We did not do it. I did not want to wait until the results were in, but I will ask now as well as the 4 vs 6 TCs. -
Audra and head east, I had the Mammaprint test rather than the Oncotype. Mammaprint does not have an intermediate -- it is either high risk or low risk -- so you may want to investigate that test instead. -
Yesterday I was so tired I felt like I had been run over by a truck. I taking Motrin for headaches and took Claritin so the bone pain was minimal. It was the first day I was too weak to do anything. My husband buzzed my hair down on sunday- I hate it and would rather be bald. I did talk to my doctor about 4 vs 6. He said he does 6 on people he is really worried about. I might just ask for 6 even if it is .5% difference, if one is in the .5% that's 100% for you. Chemo sucks!!!! But with you ladies I know we can and will get through this. ❤️❤️❤️ -
Thank you, TeamKim. I will add the Mammaprint to my list of questions. I know everything is a guess, but the less the guess the better my odds, right?
I am finally with my regular appetite. The steroids were making me so hungry, plus the upset stomach was making me eat every couple of hours.
I feel great this week! Even my physical therapist has told me that I can use a few machines and will give me a list of exercises to do for my arms, low repetitions, low weight for now, but it is a start! -
I asked oncologist about icing and he said it wasn't good idea as if there are cancer cells in mouth or nails you are preventing chemo. from killing them>??? don't know if I agree but I have heard a lot of people even use the ice caps... -
schoolcounselor - Hi! I missed you on the Oct 2013 Start board, so glad I found you here. i posted a general message to you there. I have been thinking about you a lot and you have been in my prayers. I promise you by day 7 things will start to look up! The last week and a half have been pretty ok for me except some fatigue. Of course feeling decent just in time for my 2nd round tomorrow! LOL I went bald this past weekend. Head was itching too much. So am getting comfortable with wig and ordered some other head gear to try out. HANG IN THERE! -
Today I went for a photo shoot on the beach. We were a number of ladies posing in casual-beachy look. Then it starts to pour! We finished the shooting and I was the only one with perfect hair, lol!
This is a benefit of having a wig!
Positive thinking ! -
Hi Tipps!!!! I'm holding you to that because I am so fatigued!!!! Good luck tomorrow.
Hope all are coping well!!! -
Hi,
Adding to the discussion about 4 vs 6, my Oncotpye Dx score was 19 , on the low end of intermediate. I, too, am pre - menopausal. Because the Oncotpye seemed to predict little benefit from chemotherapy, my MO and I decided to go ahead with chemo to be safe but to do TC rather than "the red devil"! My MO said TC-4 was standard protocol ! I finished chemotherapy today! Hooray! -
congratulations running!!!!!!!! -
Yeah! Congrats Running!!!!!!!!! Love your tag quote too.
Feeling tired today. I go for my blood counts tomorrow. My onc only did a half shot of the Neulasta this time because of the amount of bone pain I had round 1. I guess we'll see if half a shot is enough tomorrow.
Stay well, all. -
Thank you for the information, Running. I see you are IIb with a lymph node involved. My case is similar to yours. Did your MO prescribe radiation? Mine said no to radiation. Just the 4TC and the Tamoxifen.
I guess I am curious to get more facts. I will definitely request one of the two tests, I would prefer to have the MammaPrint, now that I read it. My MO mentioned that the Oncotype is sometimes vague if in a gray area, but I didn't want to wait for it anyway.
Having the results from MammaPrint or OncoType will clarify my question if 4 or 6TCs.
I feel so good today! Like normal! -
Runningfromcancer, congrats!!!!!! I hope your side effects are few, and hat they go away quickly and completely.
I am day 5, and in typical day 5 fashion....OUCH!!!!!!!! Uugh. The abdominal pain, leg pain, horrible heartburn this time, the sore throat...uuugh. I just hurt, hurt, hurt. I also have a temp, which I have had he last couple rounds on this night too. My temp always stays just below the guideline to call. I took ibuprofen this morning, which made me feel great all day, and my day went well. I just took some again...I am very impatient for it to kick in!!! I am glad that my side effects can be managed with OTC meds, but I am really tired of his Taxotere pain. I took pain meds for 2 days after BMX...this hurts worse, which is saying something, and I am not getting Neulasta, so it is definitely from the lovely chemo. Oh well, as long as it is causing a quick painful death to any remaining cancer cells, I am thankful for it.
I hope everyone else recovering from this latest round feels better each day. -
can you take Motrin for the stomach pain? It helped me... -
Congrats, Running'!!!!!!!!!!!!!!!!! OMG, you are DONE!!!!!! Good for you, warrior! -
Thanks everyone! I am happy to be done with chemo; just have to get through the next 1-2 weeks of feeling crappy! Then I will have Axillary Lymph Node Dissection in mid-December and REALLY be done!
Headeast -- our situations are similar! I had a micrometastases (.8 mm) on one sentinal node that was identified after mastectomy. The Radiation Oncologist did not think radiation would be beneficial, so my MO is recommending ALND as a safety precaution to prevent a recurrance!
I ran Grandma's Marathon 12 days after my diagnosis in June ! I hope to return to running once my energy and strength return....hence the name! Best wishes to all of you strong and brave women! -
Hello All - Hope all the treatments are going well! I started TC on Sept. 17th and I've had 3 so far. I have my last one on Nov. 19th. I'm scheduled to start rads next. Does anyone know how long they wait between chemo and rads? Also, how's everyone doing with their appetite and weight? I've gained a few lbs, but feel it is from the meds vs actual eating. I am still working out 4-5 days per week, just can't ran the long distances I typically do, but I do make sure my body is moving daily.
Thanks,
MC -
Can you tell me about the chemo?? I start on 14 and am scared to death...having nausea and worry already daily about it and waking up in night and early...anxiety....
Do you all feel ill or tired or like a flu??? I know everyone is different, but what kind of things should I expect??? I see some of these girls are running??? whaaatttt?? -
mc in nc, I just finished my first week of rads. I saw the RO at 3 weeks after the last TC and he was ready to go the next week. I held off for one more week in order to make my medical leave work out. I think 3-4 weeks is pretty average. In that 4th week the side effects from chemo were all gone and I was starting to get some energy back. It was nice to have a week of feeling pretty good. Good luck! -
Audra, you are going to be fine! There are many people on these boards that have come through chemo and will support you. I am part of the Starting Chemo July 2013 discussion board and I would highly recommend that you look through the posts there. You will see the progression of the treatment there, starting with anxiety and moving through side effects, hair loss, and recovery. Just remember that everyone's body reacts differently and you won't have all the possible side effects. There are also some other good posts that give you an idea of what you'll need to get ready. If you are already feeling a lot of anxiety you might want to talk to your oncologist or primary care physician about getting some Xanax or Ativan. A lot of us here found it to be very helpful as we moved through this part of treatment. It is scary at first but you'll make it! -
Auda, Everyone is different, but for me, the anxiety of the chemo was worse than the chemo. I have had 3 rounds. I will find out in 2 weeks if I have 4 or 6 rounds. Each day, I keep a log of symptoms, which has been sooooooooooo helpful. It was so hard to know that first round if what I had was normal, how long it would last, etc. Each subsequent round, I would have a symptom an see that...oh, Sunday night last round, I had that too, but was better by Monday. So definitely keep a journal. Everyone is different. Here has been my experience...
night before infusion, I cannot sleep because of the steroids. I take a Benedryl and it helps. I drink lots and lots!
infusion day: I get a yucky taste in my mouth. I drink lots!!! I get some heartburn.
Day 2: I feel fine. Just a little heartburn. This past round, I worked from7am - 2 pm on day 2, then went to my kid's game.
Day3: I feel good during the day. Day 3 at night, I start to feel like I have the flu. I run a low grade temp, get bone and muscle aches, and some abdominal pain. Ibuprofen makes me feel better.
Days 4-5: I have the same flu feeling in the morning, but 2 ibuprofen last me almost all day. I feel that way again at night and repeat the Ibuprofen...oh and Zantac too...heartburn persists for me. I also get annoying acne. My tongue feels slimy these days.
Day 6: I typically feel quite a bit better.
Last 2 weeks: I generally am a little more fatigued than normal, and always have a sore throat. for the first 16 days or so, everything tastes pretty gross.
Pretty much, I go about my daily business each day with little interference or feeling bad. If people didn't know, they would have no idea I was on chemo. I walk every day...even chemo days. Most days I walk 3 miles. The first round, I was ale to run every day, and ran quite a lot of miles. After the second round, I had a great deal of muscle fatigue the last 2 weeks... not sure how to describe it other than my legs felt like they were made of cement! I still was able to walk my miles...just not run them. I was more fatigued the second round, but never had to take naps. I just would go to bed early. The worst for me has been the pain. If I was more on top of it, it would not be a problem, but I do not like prescription pain killers, so before I take Ibuprofen, I always wait a few hours to be sure I am not running a temp of 100.4 or above. Ibuprofen completely wipes away the pain for me, thankfully. I am on day 6 of round 3, and so far this round has been identical to round 2. We'll see what the next 2 weeks bring! Everyone is different, but this regimen is very doable. -
audra67- Keep breathing and we will do our best to help you and walk you through your time in chemoland. If you feel very anxious, you may want to consider asking your onco for some Ativan to help calm you down a little. I was given Ativan in the pre-chemo IV drugs along with Zofran (anti-nausea med) and Decadron(steroid) the day of my chemo. One of the questions that my onco asked me before I started chemo, was did I have any morning sickness when I was pregnant. She said it may be an indicator of whether I'd be nauseous post chemo. With that being said, I never had morning sickness and I never got nauseaous from the chemo.. You need to know that your onco will probably give you prescriptions for anti-nausea drugs that you can take after you have had the round of chemo. Whatever prescription drugs that your onco gives you, make sure that you take them with plenty of water and food since some of the drugs can give you nausea when taken on an empty stomach. The day before chemo, make sure you hydrate and drink plenty of fluids so that your veins will be ready to go on infusion day. Continue drinking the fluids for several more days post chemo to help flush the chemo through your body. One of the things I did while in chemoland was to keep a food diary so I would know what I ate when and what agreed with me. I ate 5-6 small meals everyday at the same times so my tummy never was empty but not full. You may want to get a copy of the book, Eating Well Through Cancer by Holly Clegg and Gerald Miletello, MD. This book has great recipes, menus and how to deal with certain side effects that can affect your eating. If you will be receiving a Neulasta shot ( bone marrow boosting shot) the day after you receive your chemo round, you may want ask your onco if you can take Claritin for 7 days starting the day that you receive the Neulasta. The Claritin may help prevent the bone pain associated with the Neulasta shot. There is an ongoing clinical trial about the Claritin. Not everyone receives the Neulasta shot after the first round chemo. Because this shot is so expensive and insurance may be involved, oncos sometimes wait until the patient actually demonstrates a true need for the shot ( ie high fever, infection post chemo infusion).
I don't know if you have a port or not. If you do have a port, ask your onco for a prescription of EMLA cream which is a lidocaine cream. If you obtain generic EMLA cream, it will not come with any coverings. Just use a 4 inch by 4 inch square of Press N Seal plastic wrap to put over the quarter size dab of the cream over the port area. This cream can be used if your sutures are healed.
If you are wondering how you will feel the few days after receiving the chemo, this may be the scenerio. The first 24 hours- 36 hours, you may feel just fine and energized from the Decadron (steroid). Then the next few days you may not feel so great. I had my chemo on Tuesday mornings and started feeling a little weird on Fridays. I would rest Saturday and Sunday and then was ready to go by Monday. I know that you have read something about the nadir period which is when your white cell counts may be at their lowest and when you are most susceptible to infection. That usually occurs 10 days after you receive the chemo.( http://chemocare.com/chemotherapy/what-is-chemotherapy/what-is-nadir.aspx). The reason that this chemo regimen is given every 3 weeks is because this is the time period from the point of infusion to recovery from the infusion. Just know that you may not want to be kissing or hugging people or be around sick /coughing people. Elbow bumps can easily replace the handshaking and hugging.
I know you probably have a lot of questions and you may be a little overwhelmed. Please feel free to private message me if you want. Just remember, keep breathing. It is one day at a time; one step at a time. You are not alone ....
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Runningfrom cancer and MC, Glad to hear you are done, and almost done with the infusions respectively. I hope your recovery from the last treatment is swift and complete. I am planning to be done on January 3, after 6 rounds, but if oncotype is real low, they may stop at November 22, after 4 rounds. I see that both of you are very active. I have tried to stay very active as well. I ran through round 1, but was only ale to continue running about 2 weeks into round 2. I still walk several miles per day. I'd love if you'd check in from time to time to let us know how the final recovery is going, and how long until your energy levels return and you are able to resume more normal workouts and such.
Schoolcounselor, I saw you were having some pretty bad problems yesterday. Were theybable to get anything figured out and get you feeling better? Thinking about you. -
Chemo is kicking my butt, the stomach cramps are UNREAL. MO had me take motrin and benadryl yesterday and it seemed to work, the minute the drugs wore off, it was back. I just took it for the third time just now. No D but I am on te toilet in pain. Glad I am home alone today so no-one could hear me sobbing. Feeling a little better now, the bendryl is kicking in.
I have the beginnings of a mouth sore , so I am gargling with backing soda and water and using my biotene mouthwash. Oh boy ladies........
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