CMF Question
Comments
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js...I'm glad that you're getting a second opinion. I think it will relieve your mind and help you make the right decision for you. :-)
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i'm still getting a second opinion - but i saw my oncologist today and told him i'd do the cmf. albeit relunctantly. i wanted to do the iv then 3 weeks off routine, but he said he is not comfortable with that at all (he's not particularly comfortable with me doing cmf, but says he will take what he can get because he feels any chemo is better than no chemo). he really wants me to do the 12 weeks of weekly infusions. he pushed for 18 weeks & i said absolutely not. i also said that while i would start with the weekly, if for some reason i couldn't handle the side effects of treatments being that close together (or i start to have major hair loss that freaks me out) that i wanted to reserve the right to change that schedule so that i had more time in between each treatment. he said i'm the boss, so we'll see. i'm going to give myself 3 weeks of weekly treatments, keep a very detailed journal of how i'm feeling, LISTEN to my body, and if it's too much, then i want it changed to longer in between.
the hard thing is that he has no confidence in cmf. seriously. he says he only gives it to older patients that have very low recurrence rates that he wouldn't usually recommend chemo to but they want something just in case. i don't understand how he can have such little faith in it. especially when, according to the oncotype report, if i do cmf + tamoxefin, my risk will be reduced to 12 to 15%. i'm good with that honestly, but as i've said, i'm a bit of a risk taker.
the STILL annoying thing? that his constant answer it everything is "don't worry about it. we'll take care of it if it happens. but don't worry about how we'll take care of it, we just will. you worry too much about the details" ummm...you want to pump me full of chems? then i want the details.
since it's weekly for 12 weeks i'm going to end up with a port (ugh) so of course i said that i wanted to meet with whomever was doing it first to talk to them, not just have the procedure scheduled and meet them the day of before it's done. he's afraid that i'm going to "scare" them and that i shouldn't be "interviewing" surgeons for something as easy as a port. well, i don't really feel like being stuck on the "port conveyor belt" so to speak without having a convo with the person who i am going to be allowing the luxury of sticking something foreign into my body. i've never seen a port. i want to know what it looks like. i want to be walked thru the procedure so i understand what it entails. i want to know how big the incision and potential scar is going to be. i want to know where it's going to be placed - i know from here that if it's placed close the the collar bone or where my bra strap sits that it's going to cause a lot of lingering issues of it being uncomfortable. to which he says - just take some tylenol every day...every notice how oncologists don't seem to think anything of just shoving yet another chem into your body? like you are eating another skittle or something...no big deal. i really have no desire to be a chemical dump for the next 3 months.
so that's that. we'll see how it goes. still going to seattle cancer care alliance next friday for 2nd opinion. what i like about it is that they put you in a room with a radiologist, a breast surgeon, a rad onco, a med onco & a pathologist - then they spend the next 3 hours explaining in detail exactly about my particular cancer, it's molecular structure, what that means, and all the different types of chemo & how it will work for my particular diagnosis. then they give you an opinion on what they think is the best treatment. i'm interested to hear their thoughts on cmf. irregardless, it's the only type of chemo i'll do.
one thing that does bother me though, is the potential for liver problems. my onco said i have no reason to worry at all, with the dose level that i'll be given that it won't be an issue at all. (basically, they take the dose that would be given in that 1week on / 3week off routine & divide it, then after 6 weeks i get a 2 week break then back on for another 6 straight) but, i've started to read this thread from the beginning and it seems to be a more common problem than he makes it out to be. i'm thinking i just may become a very permanent fixture on my primary doctor's calendar because i'm not sure i'll really be "heard" beyond that i am "worrying too much".
so i guess i start in a couple of weeks. he's going to call on monday with a recommendation for a surgeon to do the port. and no one is touching me until i have a consult, too bad if i "scare them off" with my questions - they shouldn't be in medicine then!!
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Js
Two things. Tylenol is hard on the liver. I am very surprised he recommended it. And I don't know about the rest of the gals here but I am getting my treatment without a port. But I am on the 3 week schedule, maybe that is the difference. You still sound very scared and understandable so. Just remember you are going to be fine, the treatments will go well, and if you are proactive with side effects, you can curtail them for the most part. I might suggest that you do something to try to calm down such as yoga or other activity. Stress and fear are cancers friend. It is a wicked disease and you need to beat it at its own game by taking very good care of yourself including finding ways to keep your stress low. In my town there is a program called Turning Point where the YMCA offers free classes to chemo patients. You may want to google it to find something near you.
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JS, I am also on the 3 week treatment plan and have no port. I wouldn't agree to have one but I'm doing fine without it. It's harder on the nurses at the treatment centers without one but it's doable. I think the difference is that you're having yours every week or at least I'm assuming that's the difference.
I remember well how hard what you're going through now is and I do promise that once you've made a FIRM decision and start your treatments it will get easier. We all know that CMF is the OLDER chemotherapy and all the oncologist push for the NEWER chemo drugs, are they better? I don't know that anyone is sure of that even the oncologists but I do know that each cancer is different and unique to the individual so listen to what your oncs have to say, ask for detailed percentages on how each will affect your particular cancer (stage, grade, etc.) and then make your final decision. Once you've seen the percentages in detail and know your risks, then if you still want only CMF, then you can do it knowing those risks and the oncs can feel good in knowing that they've detailed those risks to you. CMF is probably not as strong as the newer drugs, hence the reason for fewer se's but that does not mean that it doesn't work, it just may not work as well depending on the cancer stage and grade.
Sorry that you're going through this but it will get better.....promise! All of our lives have changed dramatically and there's no going back for any of us but we'll move forward and be stronger because of it. Probably doesn't feel that way at the moment but I can honestly tell you that cancer has made me stronger and a better person. I focus on things that are more important instead of things that are trivial and in the big scheme of life are unimportant and my faith, family and friends are helping me get through this.
Good luck with the second opinion.....it really will help to have another onc look at your situation and give you their opinion.
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JS, Sorry I forgot about the Tylenol issue. I do think that Tylenol is not good for you but it's the only thing that my onc will allow me to take for pain such as headaches, body aches, etc. Not sure for all the reasons but it has something to do with how the other drugs, such as ibuprofen affects the chemo.......or least that's how I understand it. So it's all that my onc will allow as well.......
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My Onc okayed Naproxen for me
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Hi JS!
I just had a suggestion about the port. Why not ask you onc if you can try the first 3 infusions without a port? That way they will see how your veins recover in between each treatment. They can always put the port in after the chemo begins if it does not work without one. I had the once every 3 weeks CMF X 8 and my onc originally suggested a port. When I made it clear that I viewed a port as unnecessary additional surgery, she said "let's see how it goes without one" and also that some patients prefer them (and that is true--I would hear these women saying how lucky they were that they had ports since they could use them for blood tests).
All the best.
Mandy
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Hi JS: I have a port. This is because I had four treatment of AC prior to CMF, which I've having now. A port is advised for anyone having Adriamycin. I'm really glad I have a port. Inserting the port was a quick surgical procedure as an outpatient. I had some discomfort the day after the port was installed but never think of it now. I'm completely unaware of it except on chemo day, when I'm so grateful it's there rather then have to endure the nurses poking for veins.
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thank you everyone.
it helps me a lot to know that i'm not the only one who has struggled with these questions and that i'm not just being stupid for asking questions or just blindly accepting what he says. yes, he's been doing cancer for 32 years, but i've only been doing cancer for 2 months, so his style of just telling me not to worry isn't one that makes me feel peace of mind. the tylenol - i was surprised too. i had read that the reason they don't like you to take ibuprofen is because while it doesn't interfere with the cmf, it can make your side effects worse. but the tylenol surprised me because i know it's not good for the liver. but then, much to my extreme uneasiness, he seems to dismiss all of my concerns about possible liver issues as my "worrying too much". i usually take naproxin simply because tylenol doesn't work that well for me, i end up taking twice as much as i usually would. maybe i'll ask my naturopath about the naproxin. seriously, when i asked him what supplements or vitamins i shouldn't take during treatment, he said he didn't know and to ask my naturopath. (?)
the port - i don't want a port, to be honest. but the only good veins i have are in my hands, and he said that they wouldn't use my right side because that was the side i had my surgery on. i asked why, but again, he told me "don't worry about it, we just don't". i didn't say i was worried, but i'd like to understand my care. the nurse also suggested that i start it without the port, see how i do, and then have it put in if needed down the road. she said honestly though, most people around the 5th one ask for it. i think it really has to do with it's easier for the nurses giving the regiment - the interesting thing is, the hospital i'm at, if i were to go to the lab to get my blood drawn, they won't use the port, they would go right back to my hand. i'd ask my onco why, but i already know his answer.....don't worry about it. i think he's pushing it because it's a weekly treatment. which honestly, i don't know that i'll continue with. i'm worried about not having enough time in between treatments to recover & gather my strength, and he kind of foreshadowed that if you will, when i said that i wanted to try to stay as active as possible and do at least some walking every day because i didn't want to get into that cycle of lying on the couch that leads to no energy which leads to lying on the couch. of course i know that i'm going to have good days & bad days & i need to be gentle with myself, but i don't want to turn this into 12 weeks of me being a virtual sloth. i personally think that will only make things worse. and you know what he said to me "you are going to be very tired with little energy for 12 weeks, just accept it". so that scared me, like he's subtly telling me, yah, this weekly treatment isn't really going to give you enough time to bounce back in terms of energy and stamina. if i find that happening, if he likes it or not, i'm going to insist on the 3 week schedule. i had asked about a 2 week schedule i had heard of, and he said he'd never done it before, so he didn't want to because it would be like an experiment for him.
chemo in general - i will never be comfortable with it. i am extremely against chemo for many reasons. i truly believe it's throwing out the baby with the bath water and that what it does to your body, during treatment and the lingering issues afterwards, is poison. the ONLY reason i am doing it is because my oncotype came back with a 30% chance of recurrence. i told myself i was comfortable with up to a 20%, if it would have came back that or less, i wouldn't be doing chemo at all. the test also said that with cmf it would be reduced to 12%. cmf is the only chemo regime that i would consider putting into my body, because it's less harsh on your overall health. he of course wanted the act, but i'm not willing to do that. as it is, with cmf, i'm taking what i consider a huge chance for something even worse down the road - leukemia. i had a great grandmother who died of it in her 40's, and cmf is going to increase my risk over a 10 year period, up to 10% but he can't tell me how much. and he's worried about menopause, even though i'm 37, which is also a MAJOR concern for me. and what concerns me, how does this weekly treatment increase those risks? my body is barely going to have time to recover before i'm hit with another dose. but like i said, i may change the schedule.
i have decided on a couple of things though. one is that i'm going to make appointments to see my primary every month because i feel more confident that she'll listen to my concerns and look out for my overall health than he will. i think he will look after me, once a problem arises. before that, it's going to be the standard "don't worry about it" line. and two, once i get through the chemo part & it's time for tamox, i'm changing onco's to a woman who has been recommended to me by a few people - with all the issues that come with that, i don't feel my needs are going to be met from him in those regards.
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JS
The supplements to avoid are the antioxidents. They don't let the chemo into your cells where it needs to go.
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i see my naturopath oncologist on the 4th, then i'll have a clear picture. interestingly, although he said there would be supplements i couldn't have, he then said that it wouldn't matter if i ate whatever actual foods that have the things i'm supposed to avoid in supplement form.
merilee - what did your onc say about that? like blueberries are high in antioxidents, and they are one of my favorite berries. anytime i can find them fresh on the organics table i buy them, and if not then i buy them frozen and add them to yogurt & things
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Okay ladies...I must first post a disclaimer that I am NOT a professional singer or anything, but I gave this my best shot, because I just love this song so much. Just thought I'd share it for fun!
Excuse the noise in the background.. my little people don't really care about mommy and her silly recordings. 
Just click on the title and it should bring you to my youtube video.
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FIGHT LIKE A GIRL
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Here is an interesting little read about Iron and Chemo
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Morning (well, here in NY anyway)!
It's been kind-of nice to "forget" I'm undergoing chemo for a bit. I'm mentally preparing myself for treatment #2 on Monday and hoping it will be more of the same as far as fairly mild side effects.
Merilee: You have #2 on Thursday, right? Hope everything goes well and you continue to feel as good as it sounds like you have been.
AL1841: Hope you're feeling less fatigued now that we're on our 16th day out and best of luck come Monday (if you're still on track for #2 at the same time as me).
js37: Please let us know how things are going with you. I just got a chance to read thru all the recent posts. This is all a lot to absorb, but you sound like you're definitely asking all the right questions for yourself and making decisions for YOU...that's all any of us can do.
Hope EVERYONE is hanging in!
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Judy1973 and Al1841, hope both your treatments go well on Monday, I will be sending a prayer your way
! js37, hope you're still doing ok and that you're getting the answers that all of us understand you so desperately need.....it will all work out. Prayers are coming your way that you'll reach a decision that you're happy with. Well my 5th treatment is tomorrow and just like with all the others, my belly is starting to get butterflies....just ready to get it over with. Hoping for minimum side effects and that the Emend does well again. I'm still aching in my legs so they're decreasing the Decadron again (not sure that's causing it but for some reason they think so)....happy about that. I didn't really want it to begin with but we gotta do what we gotta do so I allowed it.
Hope everyone has a great day........
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Boy Judy do I wish I were going for number 5. I am going to ask the Onc about glucosamine. I have some very mild ache bone stuff too. Today is the last day of my antioxidants and detox. I hate the thought of it I am going to ask the Ons also about foods that are high in antioxidants like blueberries.
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Merilee: Tee-hee
...you must've meant to direct that to cabmom...I'm with you headed into #2. I hear ya, though...wish I were going for #5, too....well, maybe. The side effects, I hear, are cumulative, so I'm trying to "enjoy" the mildness of the beginning while it lasts. cabmom: Hope tomorrow goes nice and smoothly for ya!
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Thanks ladies and I wish it was #5 for all of you as well but I've been where you are and I can tell ya, it's gone a lot faster than I thought it would. I thought it would take forever to get here and thanks to all the ladies here, family and great friends, it's been "doable". The side effects are cumulative and the only major complaint I have is the aches because they have been getting worse with each treatment. Thankfully, my onc is trying to minimize them for me by reducing the meds that he can and giving me pain medication for it. Not fun but manageable. I'm hoping that you guys will not get this se......hoping for smooth sailing for all of us!
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Cabmom: Good luck tomorrow with #5. How many treatments are you having altogether?
I'm having #4 on Monday. This will be my last one unless the onc changes her mind again.
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Merilee, I've read here before that the doctors don't like us to use any supplements. I think this is misleading. My onc has approved of all the supplements that I'm taking, including glucosamine and condroitin, fish oil and such.
The question about antioxidants: your doctor does not mean that you should stop eating good foods like blueberries. Foods that are rich in antioxidants are fine.Only antioxidant supplements are the problem. They can interfere with the action of the chemo drugs, that's why we should avoid antioxidant supplements during chemotherapy.
Good luck with your treatment. Elisheva.
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MaryNY, I am having 6 treatments so after tomorrow I will have one left. Congrats on tomorrow being your last one......so happy for you and I know that you've been through a lot with having AC first then CMF. I hope you're doing much better with all the se's. I will keep you in my prayers tomorrow......
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Sorry Judy
Got my ladies mixed up again.
Elisheva: what other supplements are you taking?
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Cabmom: Sorry, I made a mistake in my post (corrected now). My last treatment will be on Monday, not tomorrow. I must have been empathizing with you when I said tomorrow. And yes, I have been doing much better with the side effects. The first CMF dose was definitely the worst for me as I'm guessing I still had so much of the previous drugs in my system.
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Mary I am so happy you are almost done, God love ya, what a hard thing to go through
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Ladies......happy to report that I am now down to 1 to go. Number 5 is now behind me and went surprisingly smooth today. Feel fine at the moment but a little tired. Hope the next few days are kind to me but I have my meds ready.......
Hope everyone is doing well........
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Whoo Hoo! Good for you Cabmom!
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Thanks Merilee.....I'm pretty happy and can't wait to put this behind. All of you will be here soon!!!!!!!
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Merilee, I'm also taking a multi vitamin/mineral, calcium and vitamin D (200 units a day). Nothing unusual. It's funny - 10 years ago I did not take a single supplement, nor a single prescription medication (now taking 4 of them.) It boggles the mind how much changes as you get older, and this all happens without any intervention on my part.
Cabmom, I remember well how upset and afraid you were before starting the chemo, and how long it took to make the decision. Making the decision is almost harder than doing the treatment itself. And now you are in a position to dispense advice and wisdom!! Good job!
I am doing the radiation phase now, and today was #16 (of 33), so halfway through. No SEs to speak of, no pink or red skin yet, and no fatigue, although I am ready for them if they come. I assume most of you will go through the same. If you have a good location with easy access (which I have) it's no big deal. Hugs and good wishes, Elisheva.
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Elisheva, Just curious about the radiation. How long did the SIM take to set up, which I'm assuming is done at inital 1st visit? Also, does each consecutive treatment take a while or is it really only about a 15 minute process? My next visit for set up, consultation and SIM with the radiation onc is on Feb 22 so just curious what to be expecting. I will have two locations to radiate so not sure how that will work but I love the onc so I'm sure it's all doable. Is there any pain associated with it? But on the UP side, I'm so happy to hear that you're having no SE's and being half way through that's great!!!!!! I know you can't wait to put this behind you. Almost there
....YEAH! You're so right about how scared I was and was terrified of what was being put into my body but given the odds and seeing my baby grow up, there was really no choice at the end of the day. This was given me those odds and after finally finding a good onc, going over in black and white the numbers, the decision was clearer. I will be here to see my little one grow up and that's thanks to finding an onc that actually cared about me and what I felt and was thinking.....so yeah, there are great ones out there. As for the advice and wisdom, not sure how much of that I can do but I will gladly help anyone that I can with the limited amount of knowledge that I've acquired on this journey.......my hats still go off to all of the ladies on this board that helped me. This board is such an asset to anyone that is making this journey.....I'm just one of the blessed ones that found it and all of you.
Well.......back to reality over here.....since it's 3:15 a.m., it's obvious that I'm not sleeping so I'm trying to catch up on the board and get a few things done around the house. Not really feeling sick, just indigestion and can't sleep although I feel mega tired. Well, that's all for the se's.....so I believe it's a good time to start a load of laundry. Hope everyone has a great day.
Merrilee, I think you are having your #2 treatment today (I think since I got it wrong in my post the other day....sorry), good luck and hope everything goes well for you.
JS, haven't heard from you in a few days, hope you're doing OK and that your visits have gone productively for you. Still keeping you in my prayers.
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