Anyone on just Taxotere and Cytoxan?
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Hi Meg,
Glad that you did not see pink bubbles like dcgirl (or did you?). Way to go for not panicking. I agree, this website contains an incredible wealth of information - stuff that your doctors don't tell you about. I can't believe that they would speed up your infusion - I don't think that it's a standard of care to do so (makes me angry when shortcuts are taken and patient care is compromised - don't they know how special we are?
). Hope that you got all of the bumps out of the way and you have little or no SE's. I will be taking over keeping the TX list, so I will make sure to add you - your 4th (and final? yipee I hope) is Nov 10th?XXOO,
Donna
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I contacted the coordinator of the bisphosphonates program today; she said that the clinical trial was still very much in progress. I am scheduled to meet with her in Nov and start the trial in Dec. If anyone is interested, check out the website that I posted; it should have a contact number for information.
Donna
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comment on antioxidents - my rad onc said he was fine with anti ox - he said that petrie testing had shown a problem, but that it hadn't held during trial testing. My chemo onc did not want me taking anti ox as she feels it can't be proven one way or the other and doesn't want it to hurt the effacy of chemo. So far I haven't taken anything but a multi and selinium during chemo - but have tried to make sure my food choices are strong anti ox...
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HI ladies,
I have been having hot flashes and night sweats on and off since 1st tx and will have 3tx on tomorrow. But I also have had periods both treatments. The second tx my period was extremely heavy. I had never experienced anything like it. I read somewhere that it could be a sign of menopause among other things listed. I'm 42 years old and I still have the hot flashes since my cycle has ended. I wonder if my period will stop or not. My mother was a late bloomer for her menopause (in her 60's). Something tells me I won't get a break from my periods, just experience heavy cycles. I also take steorids the day before, iv during tx and the day after.(4 tablets) and for some reason today I feel a little fatigued. Now I know that after I bled to death from my period first day last Tuesday this could have affected my iron. Which I an anemic and had a iron infusion already and my RBC count was coming up slowly. So that could be it but I just got so tired later this evening after bringing in groceries and walking up my stairs to the computer room. I will turn in early tonight and hopefully I can get some good sleep. I have been drinking my water and will start my dental rinse tonight and the next few days. Maybe this is what help me not have the metallic taste in my mouth the last tx. I will see if it works this time again. Hope everything goes well for everyone this week. My prayers are with you all.
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Wink, birdsong, Annie and Chris (hope I didn't miss anyone), Thanks for the info on safe cosmetics and literature. I just bought some Physician's Formula eye makeup yesterday. It said for very sensitive eyes. That's me. I was still miserable and had to wash it off. My lashes never came back fully and I'd love to play up my eyes more but it doesn't work unless I use allergy eye drops first. I won't do that on a daily basis so no eye makeup except for special occasions.
Wink - I plan to save a small honey dispenser for my Agave. Thanks again. I use a little over a spoonful for a cup of tea.
Deanna - How exciting to be at UCLA with Dr. Slamon. I enjoyed the movie but became very emotional. It's humbling to realize what so many people experienced so that we don't have to, Dr. Slamon included.
Elizabeth - I admire you so much and all the others with kids at home while going through chemo. Don't feel too bad about not having their friends in. You need to stay as healthy as possible. It's not forever although it certainly feels like it right now. My daughter wouldn't bring the grandchildren over when we thought it might not be safe. I hated that but now that I look back, realize it was the right decision. On the other hand, there's nothing like kids to keep your mind off your problems. I always felt better once they walked in the door.
I'll remember all you dear people in my prayers tonight as always.
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hey ladies.. sorry i have been MIA.. just wanted to say hello.. recovering from chemo 4.. so looking forward till the end of november when i have my last on.. stay blessed ladies..
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Meg--Sorry I somehow left you off the list for this week. Shoot!. It was not intentional, but I seem to be having more trouble keeping up on this stuff now that I am recovered from chemo and wanting to run and play to make up for the lost time! Fortunately, Donna (Wink) has offered to step up and take over for me, so beginning next week, she will assume her new role as the official "keeper of the list."
Donna--Thank you so much for taking on this new role. I hope you will find it rewarding as I did. I will still be checking in to see how everyone's doing, but it's time for me to move on now to the next chapter. Good luck to everyone.
Regards,
Sandra
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Hi Everyone,
I've been hit hard & laid low by the disappearing while blood count - couldn't believe it could go down that fast. After 4 trips to the cancer center for a daily Neupogen shot I'm starting to feel a little bit of energy. I'm wondering if I'll be able to present a seminar I scheduled for this weekend. I had no idea I wouldn't feel the 3rd week recovery like after TX 1 & 2. Anyone else have a similar experience? Will I feel like wonderwoman by the weekend? Will I be able to stand up all weekend?
Sandra - love to hear your scheduled for lots of running & playing! Sounds wonderful.
Donna, thanks for taking over! My last TX is Oct. 30 - just in time for everything tasting like witches brew.
Deanna - guess I missed the UCLA news - what page can I catch up?
Thinking of everyone going in this week - stay well
Gail
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DesertRider- I had drop in white blood count also. I felt a big difference after each shot. By the last shot I wasnt having any problems at work. I was very tired by the end of the day, though, for a couple days.
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Gail--If it's any consolation (probably not), my third treatment really knocked me for a loop, both in terms of low WBC and red. I have never felt so exhausted ever, and there was some concern I was well enough for #4. Had to go on antibiotics for the second time. Number 4 recovery was no where near as bad, so hang in there!
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Hi ~ A bit of detour here ~ got a fever and had to go get penicillin yesterday. And ~ have just been feeling soooooo down, sorry for myself. But the fever is better. Part of it is I feel SO STUPID the first couple days of each round. I lost my earplug for my phone, I lost my mail, I lost my glasses. I lost my Miralax. That latter doesn't matter too much, as I had BMs today, sorry to mention. Still kinda hard ones, but better than yesterdays. Tomorrow will prolly be diarrhea. And I am still a caregiver for my son and my cat. I want them to take care of me. It's not that I don't have others helping, they are helping a lot. It just doesn't seem like enough when I spend hours just looking for my water bottle, where did I put it?
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Gail... So sorry to hear that you've been having another hard time, although for a slightly different reason. Did you and Dr. L get the headaches under control this time around? Hope so! And I hope you don't have to cancel your seminar, although I suppose they take a tremendous amount of energy.
I, too, have had a crappy couple of weeks since my last tx. Still dealing with the vestiges of a horrible cold and absolutely no energy. The earlier comment re. UCLA was a recommendation for a TV movie that was on a few night ago, Living Proof, about Dennis Slamon, the renown UCLA researcher who discovered Her2 and developed Herceptin. He's not my onc (not sure he does anything except research at this point), but my onc is a protege of his, and every bit as dedicated, as are all the wonderful docs there. Anyway, if you didn't catch it, watch for it in the future. It's very moving.
Sandra... Your upcoming plans -- especially the skiing -- sound wonderful! I know Donna will do a great job with the schedule, but we'll miss you. Hope you'll check in once in awhile to remind us that there is life after treatment!
Take care, all ~ Deanna
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Hi dlb823
I was impresed to know that you have a doc who has been connected with Dr. Slaman. I had no idea that the interview I heard of his on " A Case to Scrap Anthracyclines" was the same man who the movie was about. I ran in and watched the interview again.What a story. Do you know what view they have there on the pill to take after radiation ? I would be curious to their view for a post menoposal woman who is estrogen positive. Plus are you doing 6 treatment due to positive lymph nodes? I am on number 5 tomorrow and holding my breath by body can keep doing this.Thanks Birdsong
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Hi dlb823, Deanna
I realized I had another question knowing you are being treated at UCLA. When it came time to pick your chemo treatment, what did your doctor suggest? Mine tried to get me to go with the ACT and when I read about the side effects, I knew I didn't want it. She said the data wasn't known yet about TC, could be worse could be better. I got on the internet and heard interviews by Dr. Jones, who introduced the ACT treatment 20 years ago and now has a different view, and Dr. Slaman and greally got encouraged to not use ACT but TC.. I would L:OVE to hear the ideas coming from a Dr. Slaman protogee.Thanks again,Birdsong
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Birdsong... Prior to going to ULCA, a highly regarded local onc had wanted to put me on AC x 4 + T x 4. When I went to UCLA for an all-around second opinion due to some oddities in the pathology from my lumpectomy, the UCLA onc, Sara Hurvitz, said 4 rounds of TC was a far better choice for me. She was totally against using Adriamycin due to its risk of heart damage, as well as a statistically small but significant risk of leukemia. She also said that Adriamycin was not the right choice for my highly estrogen receptive bc. But she was also quick to say that not all oncs are onboard with TC yet.
Since I live 150 miles from UCLA, Dr.Hurvitz wanted me to find a local onc that she could work with. Interestingly, the wonderful 2nd onc I found here also recommended AC initially -- but he also told me if I was his wife, he wouldn't even recommend that I do chemo! Thankfully, he was happy to follow Dr. Hurvitz's regimen after talking to her.
As far as a pill to take after radiation, are you talking about an aromtese inhibitor? If so, Dr. Hurvitz told me they use all 3 -- Arimidex, Aromasin, and Femara. It just depends on which one you tolerate the best, and it's sometimes a matter of trial and error to figure that out.
I think I may have given you a link at one time to a video presentation by Dr. Hurvitz, explaining the benefits and drawbacks of the different chemo protocols. If not, and if you're interested, just PM me and I'll give it to you again.
Hope I've answered your questions ~ Deanna
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Hi Galz ~
Finally, a familiar SE!!! This second round they've all been different from the first. Well, not all. But here we go with the pelvis cramping. It's not too bad. Okay, now I have a question for y'all ~
Is it the Taxotere? Or the Neulasta?
I went in yesterday and my white counts were up, nice and high. But shouldn't they have been going down? I had my chemo Thursday and my Neulasta shot Friday, but I thought the shot just made the low period shorter. That nadir was like days 10-14, so did my white count prolly not go down yet?
It doesn't matter, but somehow clarity feels good to the soul.
FEMARA or ARIMIDEX - my understanding those are the ones for post menopause. Tamoxifen is for premenopausal.
My doc told me there's no evidence 6 is better than 4, but after the 4 if the gal did well and wants an extra oomph, he'll give her 6. I AM NOT DOING 6!!!!!!! And I have positive nodes.
The data on TC is very good, as good as AC in a trial with 7-years-out results. They're getting a trial together doing a head to head with ACT against TC to see what happens. Since they used to do AC only before they found T, I'm happy with TC due to the heart problem. They don't really have a good idea how many people are adversely affected by that. They can't detect it during chemo, and it can show up way later, and it can't be fixed. So there you have it.
I'm happy with my Yew Tree and Mustard Gas poison, thankyouverymuch.
I've talked to three oncos locally and had my doc consult with one at Fox Chase in Philly. I know Dr. Kevin Fox at UPenn does TC, so if I can get my head up from these symptoms I'll go down there and do a 5th opinion with him. My main onco, who I adore, recommended dose dense AC+T but said TC is a very respectable choice. #2 felt I was an idiot not to do TAC if I have positive nodes. She was very young!!! (Of course she could be right!) #3 felt TC was very good for me, and he knows Dr. Fox.
If you're in need of some reinforcements, maybe do a 2nd opinion with a major cancer center doctor near you who does TC?
I think about it in my 3rd week when I feel better, but then it's time to go do another chemo ... I am getting tired of not being able to plan anything!!!
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Hi dlb823,
Funny, most of the time I can't find My favorite topics at the top. I did a few minutes ago but itis gone again???I did find the PM so wrote down the link. My other questions is they recommeded 4 treatments you said and I think you are getting 6 is that because of positive lymph notes. My doc said 6 not 4 since I had 2 positive nodes. Is that what you understand? I go in for number 5 tomorrow. Thanks and I look forward to reading your link. Love. Birdsong
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Hi, Birdsong... No, I had a total of 4 tx. Just finished up on 10/8. I had one positive node. I also had a mastectomy @ UCLA (after my lumpectomy that didn't get everything).
You know, one thing I'm getting from your questions is maybe a lack of confidence with your doctors. Prior to going to UCLA, I spent hours researching everything I was told -- trying to second guess every recommendation I was given, and basically driving myself and my family crazy with the non-stop research. But, once I found doctors who inspired total trust and confidence, I stopped all of that and put my trust in their expertise. I don't know where you are in your total treatment plan, but if you are still researching and second-guessing your treatment at this point, perhaps you need to find other doctors. Just a thought ~ Deanna
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dlb823
Hi dlb823,Actually, my doctor had TC listed as a second choice. What my delima now is, why you are having 4 tx and my doc says 6 and I had 2 positive nodes. Is it because you had a mastectomy. Yet I was told the same lumpectomy and mastectomy had the same survival rates.Why is your doctor comfortable with 4tx with positive nodes is my real question. Thanks again. Birdsong.
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I think Deanna makes an important point. Normally, I just make myself crazy with research too and don't find it easy to trust doctors (having been a medical malpractice investigator for a company that insures them, I've seen it all). However, my PCP had some pull, and used it to get me a consult with the breast surgeon, Jay Harness, MD, here at St Joseph's Comprehensive Cancer Center in Orange, CA. Dr. Harness was the President of the American College of Breast Surgeons last year. From the moment I walked in the door, I just felt this enormous sense of relief. It wasn't just that he was this big mucky muck--that wouldn't have impressed me particularly. It was his warmth and the sort of down-to-earth manner he took with me. He was just great and didn't mince his words. It was very easy to believe he knew what he was doing and just trust him, which in turn made the whole surgical experience easier.
Because Dr. Harness recommended my oncologist, I felt ok and trusting with him too, though I had tons more anxiety about the chemo than the mastectomy--just because. I would not have hesitated to get a second or even third opinion if I had felt uneasy with the Onco, but I was ok with him, and pleased that T-C was an option for me as I did not want to do Adriamicin.
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Hi Birdsong ~
If you like your doctor, rest easy a little. They go by what the research shows, but sometimes there's a gap in knowledge, such as is Adriamycin better or worse? So the doctor goes by her best judgement based on personality and experience. My onc was soooo honest that he is a bit conservative and tends to hold back and do what they know as opposed to trying something new, when the research shows the same result. My onc #2 said studies don't show 6 is better than 4, so he tells his patients what the data is and let's them make the decision based on how they feel. I can send you my results of that 7 year study of AC vs TC if reading it would help you rest your mind - I know it did me. I was scared of the Adria and scared of my positive nodes, but I did n't want to kill myself with the cure, either. They didn't find that four was better than six, but you know, they might find later that it is. It's an incomplete knowledge set, but be happy that even with that most of us with be all right. Then give it your best shot, don't look back, and don't fear to have joy in your life.
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Help, heartburn!!!
It's not real bad, just noticeable and kinda uncomfortable.
Is there an over the counter thing or something I should be eating?
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Annie - I had killer heartburn directly after my second TX (did not have it with 1st); had an appointment with onc later the same day and he prescribed Protonix - which he said is more effective than OTC remedies. Worked for me!
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Hi Unique, What a wealth of information. I am blown away. I would love to read your study comparison of ACT vs TC. Thanks for sending it to me. I just found out about for 6 verses 4 treatments and what a surprise. I am scheduled for number 5 in a couple of hours. I'll mention this to my doc but when I asked last time, she said she would highly recommend the 6. That is before I knew anyone with nodes just had 4. I probably will go ahead today and see how it goes. I am a little concerned about how our bodies handle it all, but then ACT is 8 times, so think of that!! Love, Birdsong
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Hi dlb823
I saw a video last night of the presentation you told me about and loved her presentation. I am curious about her comment on another page to take soy every day. That has been sooo contraversial that I am pleased to hear her say that in the face of estrogen positive cancer. What are your thougts. I believe the Doctors first name was Sally, remember it was late and I am leaving now early the next morning for number 5. Will read more when I get home.Thanks soooo much for the wealth of information that you have shared. Love again, Birdsong
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Birdsong... I think comparing node involvement alone doesn't give the whole picture. Tumor size, grade, ER/PR status, Her2 situation, your age, etc., etc, etc., could all factor into your onc's belief that you're better off with 6. I'm also guessing that the fact that your bc has travelled to a 2nd node may be good reason to treat it more aggressively. But, that's just conjecture.
About the soy... Not sure what comment you are referring to, but UCLA nutritionists advise natural soy (tofu, for example) is okay. What is a no-no is soy protein isolate such as found in soy protein powders and soy milk. In those instances, the soy has been modified and is not recommended.
Good luck with your appointment today, and kudos to you for questioning your treatment if you still have doubts about it. Deanna
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Annie.. On that heartburn, be sure to pay attention to what you might have eaten that set it off. No doubt being on chemo is the reason you got it, but the 2x I had it really horribly (w/extreme nausa the first time and unable to sleep it was so bad the 2nd episode) -- and I'd never had it before chemo -- both times I'm sure it was set off by something I ate. The first time I'd eaten Fish Tacos, so haven't eaten those again. Then, several weeks later, I had a Greek salad, and same thing -- horrible heartburn. In my case, I'm pretty sure the common factor was the raw onion in both of those things. Just a thought that might help you prevent it from happening again. Deanna
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Deanna ~ Thanks, I still have the heartburn. It's not awful but uncomfortable. Now what on earth did I eat? Too many nachos perhaps. Altho I ate those last week and it was okay. My son wants another bag as I ate them all. They taste SO GOOD on that metallic tongue, beautifully salty. But I don't want to buy more, I'll just eat them. My heartburn is the burpy variety, have had it since yesterday.
I FINALLY FOUND MY GLASSES!!! (DANCING IN A CIRCLE) Altho I lost my free wig appt again which made me weepy.
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I was plagued with heartburn too, Anne, though normally I never suffer with GI complaints. I could live with it, but it was very unpleasant. In my case OTC Pepcid worked well enough to resolve it. Glad you found your glasses. What a week you are having!
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ok, I am wondering...do you react the same with each treatment? My onc said that I would probably feel the same way each time. After reading some posts here, I am wondering if that is the norm? I have felt so good, it's almost like I don't have anything wrong with me. I did have a pepsi Friday night and have decided to have ONE a day. I have not had any headaches or other SE's all week. Will go in for TX 2 on the 30th. No hair loss, no big issues, I am wondering if I am normal?! Did have a little heartburn, a little sore tongue, a little fatigue, some diarrea but other than that, it's business as usual? What do you think?
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