CMF Question
Comments
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stephsal-Congratulations! For me, the anticipation of the first one was worse than actually getting it. Everyone is different. Did you get steroids? If you did, sometimes they delay SE and keep you feeling normal. For me, I feel great right after tx, then I get very tired, feel like lead is poured into my arms and legs. The anti nausea meds work very well for me, but I definitely take them like clockwork for two days after tx. Make sure you drink lots of liquids, especially the first few days. Someone said you should pee every hour or so. Water tastes lousy to me. I drink water mixed with pomegranate juice. At some point you will probably crash, just give in and sleep, your body needs it. Definitely up the fiber and healthy food to offset constipation. I have NEVER had constipation like chemo constipation. You may want to have some laxatives on hand just in case. I don't know about salad bars and yogurt machines. I would play it safe now that your immune system is compromised. Some of the restaurants are downright terrible with cleanliness and hand washing. I keep a big bag of washed greens in the fridge, lots of other goodies like chicken breasts, pecans and dried cranberries to put on it. Stock up on frozen yogurt in your freezer. You may not want to go out for a while anyway. I live in NYC. Feel free to PM me anytime.0
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DesignerMom.
Just trying to learn to navigate the website. How do I PM? Anyway, did get steroids b4 chemo. Asked the dr if I had to and he said would lower the dose if I do ok this time, so I guess, I'll wait and see about SE. I am taking the nausea meds every 8 hours around the clock, I guess for 2 days? How many more rounds do you have? Where did you have your Lump and SNB? I also had onco of 16 and was unsure of chemo, but hopefully this will be right for me. I needed to know that I did everything I could do! Have you had much hair loss? What about weight gain? I know these ques. seem so trivial, but just trying to figure out what to expect. thank for all of your insight.
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stephsal-I hope you are fast asleep by now. If you want to PM (private message) anyone. Just click on their name (it's in blue). Then in the upper right corner click on "send private message". Write your message and click "send". Then just keep an eye on the "private messages" tab at the top of any page. If you see a pink number, it indicates someone has sent you a PM. Click that tab, read and reply if you wish. PMs are great for more lengthy conversations etc...
Sounds like your routine is similar to mine. they give me a little bit of steroids in the infusion, also Kytril for nausea. Then I take Zofran every 8 hours beginning the day after treatment for two days. I had LUMP and SNB with Dr. Rosenbaum at St. Lukes Roosevelt. Initially the SNB was negative, but then the path report came back with micromets in one node. So two weeks later I had 9 more nodes removed. I'm so happy you are weathering things well so far. Even if you do have SE, they are all manageable. These ladies are great with tips. And no, so far I don't think I have lost more hair than I usually do. My skin and hair seem quite dry and I am slathering cream and conditioner, otherwise it seems as usual.
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stephsal.....One done! YEA! Mark that "baby" off your calendar! Just keep taking those anti-nausea meds for three to four days. You may be one who never really has many side effects and we will keep our fingers crossed for you. It was usually my third or fourth day that the side effects hit..........if I even had any........and after I learned the trick of taking the anti-nausesa meds BEFORE the nausea really set in...........I just felt a little "out of sorts." I had a little fatigue and just didn't feel quite right. The water was beginning to taste horrible so I went to Crystal Light instead because it's' very important to drink plenty of fluids to wash out the chemicals.
I tried to stay away from buffets, salad bars, and such during chemo because chemo is cumulative and your immune system really gets down. I'd never realized how many germs, etc. are associated with buffets and those types of things. My onc warned me about it and it wasn't that big of a deal for me so I just stayed away!
Keep us updated on how welll you are doing! I think you will find that CMF is easier than you imagined. Also, keep using the Biotene mouthwash and toothpaste as you go through the treatments. They are great for attacking germs in the mouth and appear to help keep those nasty mouth sores away!
Hugs to you!
Rita
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stephsal: Congragulations! The first one is the hardest.
I'm on a 26 week treatment plan--Cytoxan pills every day and MF infusion on Fridays. I have 9 treatments to go. I had constipation problems early on but was taking an iron supplement, which I'm not taking anymore until treatment is over. Miralax works well for me, but it's not perfect.
I didn't start having problems with nausea and a bad taste in my mouth until ~1 month ago (so 3 months in). It's like having morning sickness all the time, but it's tolerable. I work Monday - Thursday and haven't had to cut back at all. I also have 2 daughters (12 and 9) so I have to keep going on the weekends. I do take a lot of naps because the fatigue also started around a month ago.
You can do this and the scariest part is the unknown. Just take it easy and maybe you won't have any problems with side effects. Many on this thread didn't.
I haven't heard anything about not eating yogurt from soft serve machines or salad from the bar. I just try to eat healthy and stay away from anyone who's sick. My blood counts have been fine all along and I've had a cold for the past week and 1/2.
Wishing you well and hoping for no side effects!
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Beanius; my last bone scan was unchanged. My doctor is going to wait til the chemo is done to do the PET/CT scan; the only other PET/CT scan I had was early in 2007, which was part of what diagnosed my bone mets.
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Hi All,
Two down. This morning, I turned to an old friend from my pregnancy morning sickness days, a coffee Frappucino from Starbuck's. It helped with the nausea. Still not feeling too well but hope to be better soon.
I just thought I'd put the Frappucino suggestion out there in case it would help any of you.
Best to all of you,
cmz
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mom2acat - so glad to hear your scan was unchanged!! I hope everything else is going well for you .
cmz - thanks for the Frap suggestion!!
Designermom - best of luck with #3 today!!!
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I have been struggling with this feeling for the last few days .... I know this might sound stupid but I feel bad for, well, feeling bad about doing chemo. Other folks have it much worse with stronger chemo (since CMF is "gentler," right?). So why do I feel so depressed about the whole thing?
And here is another insane thought -- something to do with the effectiveness of CMF. If I am going to have get through chemo anyway, wouldn't it make sense to get the strongest possible to better the odds that this doesn't happen again? (my number one goal at this point).
So how crazy are these thoughts? I certainly don't mean to offend anyone -- it's just what I am thinking about right now ....
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English_Teacher: If you have any doubts about making the right chemo decision, I would strongly urge you to get another onc opinion, if you haven't done so already. Also, it might be useful to have the Oncytype test. I think you are not due to start chemo until the end of August, so that would give you plenty of time to do both. Although I decided to do chemo anyway, despite my Oncotype score, it did help me to know that the cancer wasn't as agressive as I presumed it was given that it had travelled to the lymph nodes.
I struggled for a long time with the chemo decision. I had two positive nodes so chemo was pretty much a given but I did have some existing neuropathy, which complicated the choices for me. Nevertheless, the first two oncs I saw suggested (1) TC*6 or (2) AC*4 followed by T*4. I ran scared at the idea that the Taxotere might cause more neuropathy. The third onc initially suggested AC, but then my MUGA score was very low. She also ordered the Oncotype DX test. When that came back in the grey area (18), she said she would leave the decision on chemo up to me. At that stage I went to a fourth onc. She wouldn't even consider omitting chemo due to my node status. I had AC*4 bolstered by CMF*4. Ideally she would have wanted to give me a taxane (Taxol/Taxotere) but was afraid of the possible consequences in my case. I do feel that I made the right decision. If I could have safely added a taxane to the mix, I would have.
Have you used any of the online prediction tools to see how changing the chemo regimen would change your numbers? Try Adjuvant Online or LifeMath. Try comparing CMF (1st generation regimen) with the 3rd generation regimens. Then you will have to weigh the added benefit of using a 3rd gen regimen (such as TC) against the added SEs.
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Mary -- Thanks for the advice -- I will check those two web sites out right now. If it helps make this all make sense, my onctotype score was 22 (which is, like you, in that grey area). Many thanks!
(and thanks for making me feel like these are not "stupid" concerns!)0 -
Neither of those sites take Oncotype into account. When you got your Oncotype result, there would have been one page with a graph showing predicted outcomes with hormonal therapy alone and for hormonal therapy combined with chemotherapy.
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EnglishTeacher......your thoughts are NOT crazy! Actually, most of us have probably had those same thoughts or at least some of us have. I had the same questions myself and have actually ask that very question to my onc and others. The recurrence rate was only slightly higher with taking CMF vs TC, and based on my score, stage, etc.....the risk of the other SE's from TC were just not worth it to me. There are so many things that can go wrong with TC and not that it WOULD happen to me, it just was the thought that it COULD happen to me that freaked me out. For me, what made it worse was knowing some of the individuals that some of the worse SE's happened to on TC. Bottom line is, CMF has been around a long, long time and it is a tried and true chemo regiment....there will always be something bigger, better and more expensive because the medical profession is always seeking to improve, which is what they should be doing but at what cost to the patients (meaning SE's). Personally, I liked the fact that there was so much research information on CMF and since it had been around a while, you know what can happen. All the other combinations of med's are getting there, such as TC, etc. but there's just more info available on the more common combinations like CMF, AC, etc. I've spoken with a few people at various events such as Relay for Life, and they have taken CMF and there are 20 plus year survivors out there that took this regiment. I've also spoken with ladies that had a recurrence and they took the stronger med's, such as AC. I guess, the bottom line is.....it's normal to question whether or not you're doing the right things to keep this from coming back and ONLY YOU can make that decision for you. Talk to your onc, get all the %'s of difference between regiments and understand the SE's of each regiment before making YOUR final decision. Decide what you're comfortable with doing and when you know in your heart what the right treatment plan is for you......don't second guess yourself and put your trust in a higher power. None of us know for sure....it's actually in someone else's hands
anyway! On a personal note, I know in MY heart that I've done all that I can do and that God will handle the rest.......I hope you find the peace of mind that you are looking for and I'm sure that you will. 0 -
I notice some of you refer to the chemo regiment instead of the chemo regimen.
A regimen is: a systematic plan (as of diet, therapy, or medication) especially when designed to improve and maintain the health of a patient.
A regiment is: a military unit consisting usually of a number of battalions.
Much as I'd like to think there were a number of battalions called in to fight my cancer, that didn't happen. Sorry, but the editor in me couldn't help but point this out.
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cabmom-Though you were speaking to English teacher, you were encouraging me as well with my decision to choose CMF. Thank you for that!
English_Teacher- I think our stats are similar, only I had one positive node. Even with the micromet in one node, I was given the choice of radiation alone, no chemo. I wasn't comfortable with that, needed the assurance of chemo. My Onc wanted me on TC, didn't want to use AC because of possible heart SE. After much research, I found the projected outcome for me was quite similar with TC and CMF. Initially my Onc said she didn't have any objection doing CMF. On the day of my first chemo she said "you know this CMF has not been proven to be effective of your cancer" "We don't use CMF because it is not the newest chemo". Needless to say, I went into a total tailspin. Thankfully my DH was with me and insisted I speak to her again. Though my hospital does not often use CMF, many continue to use it, including Sloan Kettering and Dana Farber. I know one BC patient who was low risk and Sloan would ONLY consider CMF for her if she wanted chemo. When I finally pushed my Onc and asked "does TC have proven better outcome on my cancer?" She conceded that they did NOT have proof that it was better because they have not done studies on it. What they do have proof on is that TC certainly has more SE,some long-term. She finally said "chemo is not a science, it is an art". I think what it comes down to is there are so many scenarios, there is NO guarantee in medical treatment (or anything else in life). I know you are doing your research. Try to tune in to your instinct and what your gut is telling you. Make your decision and don't look back. I know how hard this is and I wish you peace in your decision.
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English teacher...........Making the chemo decision is the hardest decision of all. You will make the right decision for you and only you can decide what will work best for you. Once you have made your decision, don't look backwards...........look only forward and surge ahead. There is no sure way to tackle this. If there was, we wouldn't have to contend with it at all because we'd have it wiped off the map. The best we can do is weigh the factors and decide what is best for ourselves and go with our "gut."
I found more peace of mind once my decision was made. I hope the same is true for you. Hugs!
Rita
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I stand corrected Mary.....
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Hey cabmom............I'm at fault, too. I think I've always referred to it as a chemo regiment. Oh well, it's nice to learn new things and in the meantime, everyone knew what we meant! :-)
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English_Teacher - I can't add too much to what has been said, but I want you to know your thoughts are so appropriate and not a bit crazy. I got 3 oncologist opinions, did the math calculator, a lot of research and I'm still not sure about it all. I had a really low oncotype score (6) but since I had 2 positive nodes I feel safer having chemo. I've mentioned this before too that my Mom was stage 4 at diagnosis and had a year of CMF and never had a BC recurrence (this was followed with hormonal therapy). One person is a small sample size, but I am convinced that my cancer was hormonally driven and any chemo will be less effective than hormonal therapy. The more research and opinions the better.
One thing I was wanting to ask of others who have gone through CMF is if anyone has had heart palpitations as a side effect?? I've had this before at times of work stress and also thought it was maybe a chemo induced menopause effect, but I thought I'd ask. I had it checked out by a cardiologist about 8 years ago who told me my heart was strong and that I'd never have heart problems. He said it was stress related and sent me home. Maybe I'm just having anxiety about 5 more rounds??? Otherwise I'm doing pretty well and chemo brain is my main problem, just kindof spacey. I was able to get out for 40 minutes yesterday and walked 20 min and jogged (slowly) for 20 min. It felt great and I plan to get out and keep on moving today. My second chemo round starts Aug. 3. (I'm on the 28 day cycle with cytoxan pills for 14 days and MF infusions on day 1 and day 8 of the cycle, then 14 days off).
I'm wishing you all a wonderful Monday and fantastic week. Take care. ~Beans
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Rita, thanks I guess I just wasn't thinking but it is always nice to learn new things
! My post might have sounded cranky but I certainly didn't mean it that way.....sorry Mary 
! Appreciated being told the difference !0 -
Quick question since I just posted this same question under a different thread BUT has anyone else considered a Laparoscopic Hysterectomy? Because I am ER+ and PR+, I know that the hormones play a key role in the kind of cancer I have. I am 41 and have no children and certainly want to be as aggressive as possible, I guess, so I can cut the chances of encountering BC again. I am slated to start CMF next week and as of today I am scheduled for the hysterectomy at the end of December (when I should be finished with CMF as long as there are no complications), So I guess I was wondering if anyone who is doing CMF (most folks with this treatment ER+ and PR+?) is also taking this option as well?0
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beanus, I did have heart palps after one of the chemos..it is a side effect..not well publicized
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English- Why are you having a hysterectomy? Is it that you don't want to take Tamoxifen to reduce the estrogen effect? I'm in the Tamoxifen research mode as we speak, not sure if I want to take it either. However, I think the body produces estrogen in other parts of the body, so a hysterectomy (I'm assuming with ovaries removed) would not take care of all the estrogen. Also, you need to consider the possible SE from major surgery. I may be wrong, but I don't think a hysterectomy is standard in young ER+ PR+ women. I would research more.0
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Thanks, DesignerMom, I will keep researching -- and I will talk to my oncologist about this next week when I see her next. I may have missed something but my GYN seems to see the hysterectomy as something that will help with the tamoxifen. I am still planning on taking the tamoxofin but she said something about the hysterectomy (with removal of the ovaries) as being a proactive move to help get rid of as much estrogen as possible. And the GYN also said something about the Tamoxofin raising my risk of cervical cancer.
My oncologist did say something about removal of ovaries before (when I first met her two weeks ago) but I hadn't equated that with any type of hysterectomy -- or even something that I had to start thinking about right away.
I know this doesn't make 100% sense because I am still trying to wrap my head around it. Like you said, I didn't think that a surgery like this was standard for someone in my position -- but have others had their ovaries taken out to lower estrogen production?
(and, again, I appreciate the help!)
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Hi All,
I'm one week out from TX #2. I started shedding hair on day 13 and it falls out, one strand at a time, all day, every day. I shed alarming amounts shampooing, Nothing falls onto my pillow during the night so far. Are things going to improve or is this what I can expect for the duration? I know everyone is different, but I would appreciate some feedback from others with some experience.
THX much,
CMZ
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English-teacher, I would do some more research as well if I were you. I am the same as you and there are only 2 years difference in our ages at diagnosis....my onc has only said that doing a hysterectomy would not eliminate the issue and that only Tamoxifen would. There are other things that produce estrogen and I do agree that it would eliminate some but is SOME enough
! I don't think anyone knows the answer to that question...unfortunately. I do understand wanting to try though. I guess to be honest, I haven't done enough research to actually know what percentage of benefit that it would be so it would be smart to find out. Good luck....CMZ, I remember how scary it was for me when I starting shedding. For me, it was pretty much from the 3rd treatment on that I would shed. Mine didn't really get any better until about 3 weeks or so after the last treatment but having said that, it wasn't really noticeable to anyone but me and my hairdresser. I really do think that you'll be fine but I totally get the fears! Sorry I can't add anything more and ease your stress level about it. It really is an individual thing but most of the ladies on here, I think have experienced pretty much the same thing that you are describing. Just be really kind to your hair......Sending positive thoughts your way!!!
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Hi Ladies,
I'm on TCx4, but after a bad reaction on #2 I'm considering a switch to CMF. I have some questions, do all of you on CMF have a port? I'm afraid of getting a port. Are your infusions 3 weeks apart and do you get all your chemo drugs in 1 session? I know Meliss switched to CMF from TC, did anyoneelse switch to CMF from another regimen? If so, how many treatments of each did you get?
Cheers!
Julia
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SocalLisa - thank you for the info...it has resolved now, but it's nice to know someone else found this as a SE. I sincerely appreciate you sharing.
English - My family history includes breast cancer, uterine cancer, ovarian cancer and skin cancer, so hysterectomy and oophorectomy have definitely been on my mind. At this point my breast surgeon said there isn't enough family history to be conclusive and I didn't test positive for BRCA or other gene mutations. I was referred to a specialist to discuss ovarian cancer screening but have not gone yet. At this point all my doctors seem to agree that the order of treatments is chemo, then rads, then tamoxifen. I'm leaning toward no more surgeries. My oncologist at this point has said no more surgery is necessary. My oncotype score was really low. I plan to do more research while having chemo and rads, then go to the ovarian specialist once I start tamoxifen early next year.
Cmz - I've finished round I and start round 2 next week. I have noticed slightly more shedding, but nothing noticeable yet. I can imagine how alarming it is and I hope it slows down for you. I have gotten several wigs just in case and it gives me some comfort to have them as a backup. Best wishes to you on this darn SE!
Julia2 - I'm getting IV treatments of the M & F and C by pills. Others are getting it differently. I refuse to get a port. (My mom had the same treatment I am getting for a year and it was all by IV and she was fine, she never had a port). I'm getting 6 cycles total (5 months). Before I got my oncotype score the treatment options were ACT or TC, fortunately my score was low, so I was offered CMF. Each cycle is 28 days. Day 1 and day 8 I get MF infusions (with zofran & steroids), and day 1 through day 14 I take cytoxan pills. Days 15 through 28 have no treatments. So it's basically 2 weeks on and 2 weeks off. It's been very doable so far with chemo brain and constipation as the worst SE's. During the two weeks on chemo, I take one zofran in the morning with breakfast then wait 30 minutes or so then take the cytoxan. I'm drinking about 3 quarts of water/fluids each day, really pushing fluids in the morning to flush the cytoxan. Then one atavan at night. I've had zero nausea and sleep well. I hope it works for you to switch!!! Good luck!!!!
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Beanius,
Do you have rads still to do? I do, one of my concerns re: CMF is delaying rads longer.
Julia
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Hi julia2, yes, it's chemo, rads, then tamoxifen for me. Some of the other women here have posted doing rads at the same time as chemo, and some have started chemo, then done some rads, then finished chemo...I was hoping to get chemo and rads all done this year, but it looks like I'll finish rads in January, if all goes according to plan. I'm not sure of why you are concerned about delaying rads. My concern is mostly that I've already paid my insurance deductible this year. (And I want to get this over!!) I see my oncologist next week and was going to ask about maybe starting rads toward the end of chemo so I could finish both this year.
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