CMF Question
Comments
-
Yup number 2 today at 9:30. Please send positive light.
0 -
hey everyone - yes, i'm doing okay. sometimes i need to just not think about things for awhile, you know? although, that doesn't work very well for me. i've been very anxious about my oncologist. i've come to accept that he's not the right doctor for me, and i need to switch. for all the reasons i've stated before, for him dismissing my concerns as "hysterical", for him answering all my questions with "don't worry about it", making statements that i shouldn't ask detailed questions of the nurses who will be giving me cmf & the surgeon for the port (which i may not get) because i may "scare them off" he says i'm the boss & it's my decisions, but then it turns into a 2 hour convo with him trying to talk me into something different, often times with scare tactics. i think he'd be a great onco for a patient who needs someone to say to them - don't worry, we are going to take care of you, go home and focus on being strong - and who doesn't need to know the why or how of things, but that's just not me.
*and*, after last week where i went in to ask him all of my questions and he basically brushed them all off as my "worrying too much about the details", he then said that he'd have someone from the office call me monday to schedule the beginning of my treatment. it's now thursday & i haven't heard a word from him, about anything. i can't be the one always following up for appointments and follow ups when i don't even know what i'm supposed to be scheduling!
i have an appointment tomorrow at the seattle cancer care alliance tomorrow. i can't wait to hear what their thoughts on cmf are - he dismisses it as one step above nothing for me, and that the only way it could possibly work is if i do it every week for 12 weeks instead of the more classic one treatment, 3 weeks off. he basically thinks that is useless for me. i've realized that even though i'm node negative, because i had an aggressive tumor, he's treating me as if i'm node positive.
i don't know if i'll choose an oncologist at the cancer care alliance or another one at swedish. the entire experience at swedish has been phenomenal except for this, and i love my bs and want to stay with her for my follow ups for the next 3 years. i trust her. i will say that i'm afraid of trying to get an appointment with the woman oncologist at swedish that has been recommended a few times to me because last time i saw him he made a statement to the effect that other onco's would refuse to give me cmf and tell me that they couldn't help me, and that i didn't want the reputation of being difficult.
he just makes me all around anxious. but he constantly says things like how cancer cells could be growing in my body right now (he makes me feel as if i still have *active* cancer) and if i don't do something right away that it may be too late...but then i don't hear anything from him and the result is that i've been walking around feeling as if a new tumor is growing as we speak and every decision about what i eat or if i have a glass of wine is fueling them on.
0 -
You definatly need a new doc. The doc should make you feel secure and this jerk is doing just the opposite. Sounds like a control freak to me which is his problem and he is making it yours.
I had a very similar experience but I must tell you that the new onc and her staff are premo, I love them. Your new onc will get you started right away and you can get this behind you.
0 -
haha, he tells me that i'm the one that has "control" problems and that i need to just let go and trust that he knows best. i can't operate like that. i need to know what's happening to me. i'm not necessarily afraid of the end result anymore (cmf) but i am afraid of not being prepared. i've learned everything i know about chemo & all that goes along with it from my own research & talking to people here on the boards, and not one single thing from him.
0 -
I have said before that we need to start a list for bad doctors simalar to Angies list for businesses. We would call it the BOOB list LOL
Had my second treatment today and am back at work and feeling just fine.
0 -
yay! gives me hope that my treatment isn't going to be horrible. i'm comfortable with my decision to do cmf, i'm comfortable with the risk that comes with it given my dx. now i'm hoping that the new (woman!) onco i managed to score an appointment with today (whose been recommended by others from the seattle chemo thread) will be able to give me more understanding and insight on the once a week thing vs. the treatment than 3 weeks off. i had read that the "standard" was the pill for 2 weeks straight, then the iv, then 2 weeks off. but i don't want to do the pill because all the research indicates that it's actually harsher on the body. so then the protocols after that were either the 1on / 3 off or this other one where it was day 1 cmf, day 8 mf, 2 weeks off. he dismissed both, actually saying the latter would be an experiment for him that he didn't want to try. it will be interesting to hear her take on the different regimes of cmf.
but i can say, just accepting the decision that he isn't the right doc for me, has made me feel better. like things won't be a constant battle and that i'll be listened too and not dismissed. here's hoping that i still feel that way after my appointment this afternoon. but then, i sort of look at it as kismet - i called, and they just happened to have a cancellation for today. same thing happened with my bs. the person i was originally scheduled to see, i never saw her, because a cancellation opened up earlier with my now bs - and she is absolutely perfect for me.
0 -
Awesome
Here is how my treatment looks
First they check my blood levels
They start an IV of water. Then the Steroids for nausea and opening the blood vessels( injuection into the IV)
The I take a Zofran ( also for nausea)
Next comes injuectins into my IV line of the M & F
Then a drip of the C
A breeze really, 3 hours total
0 -
i'm really hoping to avoid a port - i was sort of okay with it in the i have to have, suck it up way, because of the weekly treatment thing. but then i did some research & it said i have to have an incision in my neck with a line into my jugular...not so sure about that. so i'm hoping i'll get better answers than 'don't ask the surgeon that, you don't need to know that' when i ask questions.
i have already decided though - no steroids during my treatment, that's a non negotiable for me. i've taken them before for 2 bad pneumonia's, and i HATE the way they make me feel, the mood swings were *unbearable* for me, and i gained 30 pounds. and i started breaking out. at 35. i can't deal with that.
0 -
It was my experience that they only give you steroids (1 pill) just before the IV. You won't have a prescription or anything. The one negative effect of the steroids for me was 2 days later when the drug wore off....very tired.
0 -
I actually don't get steroids at all....at least I definitely didn't the first time. I go for #2 on Monday. I just received Zofran, then a big ole' bag of cytoxan, then smaller bags of methotrexate followed the 5-FU and finally a small bag of normal saline to wash the vein out which she didn't even have me finish completely. The nurse was very clear about what she was putting in me and I had my husband read the bags after she placed them, too...just for my own knowledge.
0 -
JS. I got steroids but they were for nausea. When they did not work for the nausea, they were stopped and something else was used. You definitely do not need to do steroids if you do not want to. And I had IV chemo for 8 times...no problems in finding the vein. I hope that your new onc listens to you. I changed oncs because the first one did not listen.
Cabmom and Mary: only one more to go for both of you. That is reason to celebrate. YAY!!!!
Cyber hugs to all
Mandy
0 -
Interesting that my immune system bounced back to better than before chemo in 2 of the three areas that they check and was in the ok range in the third area. I was thanking my body today
0 -
js37 - I second what Mandy just wrote. I also did not get steroids and did very well without them, and I don't see why anyone needs them, especially with their unpleasant side effects. I got a pepcid pill instead...
Cabmom - in my case I first met with the radiologist to talk, when he explained what's to be done, possible SEs and such. That was very shortly after the end of chemo. The simulation was scheduled for 2 weeks later. It took with me about 45 minutes total, but the time on the table was somewhat shorter. Make sure that you are completely comfortable when they position you, because after 10-15 minutes you'll start to feel it if anything about your position is not perfect. I had to move my head after a while, and the nurse came running and was upset with me. Then treatment itself begins about a month after the end of chemo. It may be different with you, but nothing to worry about. In my Center, I come in late afternoon when it's quiet there, and at first didn't have to wait at all. They call you in, you change (only the top garments) and they give you the treatment itself. That takes 5-7 minutes total, but the radiation itself is about 1 minute only (it's like 15 seconds from one angle, the machine rotates and they "hit" you from another angle for another 15 seconds.) Then I was out of there as soon as I got dressed, so it's really fast. This past week I had to wait a bit longer because they had more people scheduled for that time, but it was still OK. I even made it back to work in time today (one day a week I work 5-9 in the evening.)
One thing I found is that it helps to have an understanding boss and sympathetic co-workers. I am really grateful to them all. Congratulations on being almost done, and to Mary too! Cheers to all, elisheva.
0 -
what a difference a doctor makes!! oh my god, i can't tell you how much better i feel...how nice it is to have a doctor totally behind my decision, who believes cmf is not only a viable option for me, but she said it was what she would have recommended in the first place, and that a.c.t. would be total over kill for me. THANK YOU!! and she took the time to explain the science behind the different regime protocols, as well as going into numerous studies by some top people she's worked with in the field (she's connected research wise, with people who are active in recent studies) and i actually ended choosing a regiment that is longer than what the last onco was advocating. because she EXPLAINED things to me. i'm going to end up taking the cytoxen pill, very very low dose every day for 6 months. most recent studies have shown that not only does the extreme low dose over time work better, but apparently they also indicate milder side effects (apparently studies show this also includes minimal hair thinning. she said to expect 5 to 10%, that's the average for her patients on this regime. of course it may be different for me, but that is her normal base line for 95% of her patients.) the part that surprised me was that i'll be getting weekly mf i.v. treatments for the next 6 months as well, but each does is super low, so in the end, i actually end up getting LESS than what the last onco wanted to give me in the space of weekly 12 week treatment. and studies show it actually works BETTER. i just feel like she is much more up to date & informed.
and i feel more informed. and better prepared. am i thrilled to be doing this for 6 months? absolutely not, but it feels so much better to have a doc who actually believes in the treatment. and steroids are not an issue, she said there was no reason to give them with cmf so no problem, i'd get a different anti nausea drug.
this is the very FIRST time i have come back from an oncology appointment where i actually feel positive.
0 -
and not to say that they way she is doing it for me is better than what any of you are doing - this is tailored to my individual cancer cells, i am a 9 out of 9 and i scored a super high oncotype score. the reason i'm getting it this way is because of my cancer cell biology.
0 -
it just says to me that my last onco was more concerned with shoving as much as the drug as he could in me without taking anything into consideration - like a said, he was definitely a "chemo doc".
0 -
That's such GREAT news js37!!!! You sound so relieved and that's wonderful to hear. It's so important to feel like your onc is on your side. We ARE with them for just about FOREVER!! I'm in chemo for the next 6 months (5 now), too. I'm not thrilled about it either, but it is what it is. It's just so great to hear you sound so positive!!
Merilee: Happy to hear things went well today. Hope your SEs are mild (if not nonexistent) over the next several days.
Mary and cabmom: ONE TO GO for you!!!! WHOO HOO!!
Back to work for me Fri, Sat, and Sun nights...maybe typing about other people's ER visits will take my mind of chemo on Monday...somehow it never really does, though.
0 -
It is nice when everything is explained isn't it..
0 -
i know! i'm in a much more positive frame of mind.
0 -
js37: I'm so glad you found an onc that you are comfortable with and that took the time to explain things to you.
What was your Oncotype score? Mine was borderline at 18, but I had positive nodes. One onc said no chemo but the last one I saw said I definitely should have chemo because of the positive nodes.
0 -
oh, mine was SUPER high, i got a 48 with a 32% recurrence rate if i only did tamox. the first onco said that he'd never seen a result that high. but my tumor was strange in many ways, it had a cyst component to it that grew out from the side. aspirate it, it would repair itself and refill. decimate the cyst with a core biopsy, it would repair itself and refill. smart little sucker. ;p
i really struggled with the chemo decision - i have a very firm opinion about it, but i have to say that i had no idea about the cmf optionm had no idea this existed. i'd only heard of the more aggressive 3rd generation regimes. for me, before my surgery, i said i'd only do chemo if i had node involvement, because that means it had traveled to the lymphatic system and that would mean possibily beyond. but mine came back clean, so i thought i was okay - i wasn't going to do it. the 1st onco kept pushing so i insisted on the oncotype test. so then i told myself, if the oncotype came back super high, i'd do chemo. it wasn't expected to be this high, but it was. what i've learned is that you have to have to be comfortable with your decision, even if you don't like it. i don't like that i have to do any chemo, but i'm comfortable with my cmf decision. but that being said, my understanding is that once nodes are involved, cmf isn't recommended. did the oncotype give you a recurrence percentage with cmf? it should be page 3 of the report for those with node involvment.
did both of them explain to you why they had their opinions? cite studies that they base their opinion on? give you examples from their patient population? i guess that goes into my "needing too many details" but wow, having those details sure made me feel a hell of a lot better about my decision, because i understood the science behind those opinions
i think it's a given that no matter what we choose, we'll always wonder if it's the right decision. for me, i *feel* instinctively that it's the right decision, and because of that, it is - regardless of the outcome.
0 -
js37... just read your last couple of posts .... wanted to pipe in since I too took my cytoxan orally. I think it's a Seattle area kinda thing .... I live over here in Poulsbo and had txt in Bremerton, and had my 2nd opinion at SCCA.
I took the cytoxan pills for 15 days straight and went in for infusions on day 1 and 8 of those 15 days for 6 month. I have a friend who was txt thru SCCA and did the regimen you are going to do, low dosage every day for 6 mo. Bottom line .... very doable !!!!!!!
To port or not .... I did have a port and was happy I did with 12 pokes for txt .... I hate getting poked and I would put numbing cream on my port and didn't feel a thing. Now my friend had 24 infusions (which it sounds like you will be getting) and she did not have a port and did just fine.
So glad you have a plan and feel confident with your new team !!!!!
To my other CMF friends .... I love it .... your all talking each other through the ups and downs, wow I can't believe that many of you are finishing up your txts already. Life does move along doesn't it.
Sitting here two weeks out reconstructed ... I never would have thought this would be me back in Oct 07 .... time truly heals !!!!!!
0 -
Hi js37: I had an underlying condition, transverse myelitis, that made the chemo decision more difficult for both me and the onc. Without that, the treatment would almost certainly have been TC*6 or AC*4-T*4. The problem was giving me a taxane with existing neurologial problems. Typically the Oncotype test is not ordered for patients with lymp node involvment, but my case was atypical so onc ordered it. According to the test results, for my score the typical recurrence rate with Tamoxifen is 12% and according to one study of women with lymph node involvment, chemo does little to reduce the recurrence rate for people with a similar score. Having looked at that, this onc said it was my choice whether to do chemo or not. She did not advise one way or the other. While it was very tempting not to do chemo, I felt that I didn't have enough information or expertise to decide. Also the study cited was done on a very small number of women AND they were post-menopausal, so I felt it was not applicable to my case.
So I went for a final consultation to another onc (this was onc #4). She dismissed the Oncotype report as there is not enough data to use it as a predictor on node-positive women. She said I should definitely have chemo, but like #3 said I should not have a taxane. So her recommendation was AC*4. She brought my case up twice before their tumor board and based on her own research and their advice, she suggested that I follow up the AC*4 with CMF*4. I'm going for my final CMF treatment on Monday. Then I will have all this chemo behind me. I won't say it's been easy and I don't have any regrets about doing chemo as I want to blast this BC now with everything I can.
0 -
Hello everyone. Thank you for your replies from my previous question about the timing of CMF side effects. My mother-in-law went through her first CMF treatment late Tuesday afternoon. It is now Friday afternoon, and she has experienced no side effects. She isn't tired in the slightest, no nausea, no mouth sores, no constipation, nothing. She went to work all week and she is cooking for my husband (when he is supposed to be there taking care of her!) We keep waiting for something to drag her down a bit but it's been 72 hours.
Has anyone ever heard of this? And will this be the case after every treatment? It seems way too good to be true, especially after reading through everyone's posts. Don't get me wrong...I'm not complaining...just happily curious!
Meryl
0 -
Meryl: Every case is different. Your MIL seems to be one of the lucky ones having no SEs. Good for her! My worst day each time has been Day 3, so if I had treatment on a Tuesday, Thursday would be my worst day. So I think your MIL has passed the hump.
0 -
I am in day 2 of treament number #2 and feeling just fine so far.
0 -
Meryl .... whoooohoooo on no se's. I as well spent more time than I should have waiting for the other shoe to drop .... it never really did. I certainly wasn't quite as chipper as usua,l typically day 2 or 3 after infusion day, but I was able to work and continued to be productive. They say the effects are cumulative .... but I think if she breezed through this first one, she'll probably do well throughout. Great News.
0 -
Wow Day 3 and still feeling fine. I stopped the compozine yesterday and was ok, no nausea what so ever. I am feeling pretty lucky. Drinking lots of water and using benefiber 3 times a day to deal with my only real side affect.
0 -
Merilee. Glad to hear you are coasting along with no major SEs.
I'm going for #4 tomorrow. My last one!
0 -
Mary, so happy for you!
0
