CMF Question
Comments
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julia-I didn't switch from another regimen, I chose CMF instead of TC. Even with one positive node, I am still relatively low risk, with a low Oncotype score. I didn't want the known, more severe, sometimes permanent SE from the other chemos for a relatively small benefit (in my case). I am getting CMF, all by infusion, once every 3 weeks. I just finished #3 and am halfway through chemo. I know the longer CMF regimen will put off radiation for a while. As I had clean margins, lymph nodes removed and am now on chemo, I am okay with that. No port for me either. Though they can only use one arm, and my veins aren't great, we are managing well. CMF is not as vicious on your veins. My chemo nurses are masters at finding good veins....didn't even know I had some in places they found! Good luck with your tough decisions. Did you go to Cancer Math and plug in the different scenarios to project benefit outcome stats? That helped me a lot.0
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DesignerMom - HURRAY, HURRAY, HALF WAY THROUGH!!!! HUGE CONGRATULATIONS!!!!!!!!
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Thanks Beanius,
I guess I just feel nervous about delaying rads for maybe 8 months post surgery. Seems like if it's an important treatment we should be getting it sooner rather than later. Or conversely, if it's NBD to delay it, and we're getting chemo, why to we need rads anyway :-) Ok, here's my little rant/pity party: This so sucks! I was only supposed to be getting surgery and rads, all wrapped up by the end of June. Then suddenly I need chemo, but NBD, only 4 rounds, done in 12 weeks, all wrapped up by October. Now i get to choose sticking with that plan and risking anaphylactic shock or switching to CMF and dragging this out through the end of the year. I hate my choices.
I feel better now.
Julia
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DesignerMom,
I did go to Cancermath, but I don't feel it helps me much as it doesn't take into account my miserable oncotype score (33). I'm 'supposed' to be low risk (grade 1, stage 1, 0.7cm, 0/1 node). I had pathology done 4 times (biopsy, lumpectomy, 2nd opinion from Mayo and Oncotype), all agreed grade 1. I'm not very ER+, that's part of what's driving the Oncotype score I believe.
So DesignerMom, you're just having 6 rounds of CMF?
Julia
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Julia, the decisions that come with this diagnosis are really tough. I know that it seems like you'll be doing treatments FOREVER with the CMF, but really it goes faster than you think. You usually have so many good days while doing it, that you can continue to do most of the things you love. Then comes the radiation. It's a pain going every day but if you are an early riser and can get an early appointment, they are never running late and you can get right in and out, thus having the rest of the day to do your thing.
Once you've made a firm decision, you'll be able to make your plans and you will feel better about the whole thing. Hugs!
Rita
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Hi Julia:
I had a combination of chemo regimens - AC*4 followed by CMF*4. TC would have been the standard choice with the first two oncs I consulted for someone with my diagnosis, but because of my medical history AC was the choice. Like DesignerMom, I had an Oncotype score in the gray area, so that made me feel a little more comfortable in not going for the more agressive TC. When I started AC, the onc initially said she would like to give me six doses, but I was having a lot of SEs so she settled on four. But then she decided to add CMF to bolster the effect.
I had a port. A lot of oncs insist on it when one is on Adriamycin. In any case I've very bad veins and was very happy to have the port. It was one less thing to worry about each time I went for an infusion or blood draw. I had the CMF every two weeks and got all my chemo drugs in one session. For me it was much easier than AC, but I still have a lot of side effects. I'm guessing the culprit was the Cytoxan as at that stage it would have already built up in my system.
If you are concered with the delay in getting rads, you could ask your doc if they do the two-weekly program. You would get treatment over faster but would also have more concentrated SEs.
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Thanks Ritajean and Mary, Waiting for onc to call, still not sure what to do. Cytoxan is not my friend either, I have difficulty urinating for the 8-12 hours after the infusion, I know it's Cytoxan as last infusion I got my Cytoxan the day after the Taxotere. I hate chemo! I feel like I'm being poisoned, bloody oncotype score!
Juliia
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Julia: in my case the SEs weren't all immediate except for the horrible stuffiness in the head after the Cytoxan. When they slowed down the Cytoxan infusion that helped with that immediate SE. Did you have an allergic reaction to the Taxotere?
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MaryNY,
Yep, reacted to the Taxotere.
Julia
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Julia 2 - I take Cytoxin pills every day and get an infusion of MF and 5FU every Friday for six months. I have 7 week to go and can't wait to finish--the last two months have been rough, but tolerable. I had a mastectomy so no radiation for me. I have a port that was put in when I had my mastecomy because they were pretty sure I'd have chemo. It's not been a problem and it's convenient since I have 26 infusions. That said, I've had a lot of continuing pain with my tissue expander and can't wait to have both removed!
English_Teacher - As others have said, I'd do more research and get a second or third opinion. I'm surprised it's your GYN that's suggesting the surgery--I have relied soley on my onc, breast and plastic surgeons for my treatment plan. I love my GYN, but she's not trained to treat breast cancer. One thing to remember is that hormones don't only come from your ovaries--you can also get them from foods, although my onc says you'd have to eat a lot of soy for it to make a difference.
There's so much to consider and it's a personal decision--there are lots of women that have done chemo, rad and tamoxifin and never had a recurrence.
One other thing to consider is genetic testing. Have you had any? In womon with BRCA mutations, a hysterectomy is standard treatment because of the increase in ovarian cancer.
Good luck with your decision and I'll think positive thoughts for you.0 -
Again -- thanks to everyone the last few weeks in answering questions! I start CMF tomorrow -- and like I mentioned a week or two ago -- my oncologist wants to start radiation after the second or third treatment (every three weeks, 6 times). Like Julia, I was originally a bit pissed because I thought just surgery and rads but, also like Julia, I have a higher end onctotye score (22) -- I am in the intermediate category but we are opting for agrressive treatment because I don't want this again (and I am 41). After lots of reading and lots of talk with my oncologist, I am fine with this decision. I have even bought some cool scarves (and even got a free one from "France Luxe"!) because I am suspecting that at some point I will need them -- my hair is already super-thin and I spend a lot of time everyday getting the little volume I have. So not only will I most probably lose a little or more hair but I suspect my energy levels might be down a little too. A scarf sounds easier!
As far as the hysterctomy issue -- I am scheduled for surgery in Dec but haven't made a final decision on this yet. My GYN and oncologisy know each other -- the GYN said she has worked with several breast cancer patients lately with my same profile. BUT I still want to talk with my oncologist more and give this more thought. I am BRCA- (which tells me maybe I don't want to do this) and I know that the ovaries are not the only estrogen source in my body. I also don't want to have any adverse physical issues later (etc. bone). I did read the stuff on soy with interest since I am vegetarian who is progrssively making the move to vegan. So in a nutshell -- jury is still out on this one for me. I have heard both sides of the issue from women who have gone one way or the other -- and I guess in the end this has to be my decision.
But for today -- I am just focusing on not getting too nervous about tomorrow! I think I am OK since I just want to speed this whole process along.
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Hello all - it's been a while since I have visited this thread!
Julia - a woman named GinaGina also had a bad reaction to TC and had to switch to CMF. I think she had 2 of 4 TC's, so they gave her some chemo "credit" and shortened her total infusions. She did not need radiation from what I remember (BMX). I had 6 months of CMF, followed by a re-excision and THEN rads, so I had rads 9 months after my lumpectomy. My very conservative oncologist, and radiologist were not concerned with the timing. I think it is ideal to get it earlier, but sometimes it just isn't possible.
English_Teacher - I was 44 when diagnosed and not anywhere near menopause. CMF changed that and put me into menopause. I tested as a poor metabolizer for Tamox. anyway, so I am on femara. My onc. tests my hormones every quarter and I am have stayed well into menopause. My point is that it's possible CMF will take care of your ovaries without surgery. According to my oncologist CMF does that more than other chemos. I'm not sure why. I had my period the first two or three months of CMF and then that was it! On came the hot flashes, and I take neurontin for that (so it doesn't wake me up!).
Just a thought that you could see how it goes on CMF and avoid the surgery.
Good luck for all that are starting, just done or in chemotherapy - I KNOW it seems like forever, but it has been a year since I finished and it seems like a long time ago - thank goodness!
Thanks to Rita, and the other "Veterans" for staying with the thread - you all made CMF so much easier to deal with.
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English - Wishing you all the best with CMF #1 tomorrow. I start CMF #2 tomorrow! #1 went pretty darn well for me, so hope you won't worry.
I have another question about hair...I finished round 1 and have had nearly the same amount of shedding as normal...still have all my hair... My question is do I start using Nioxin products now or wait until/if hair starts thinning? I tried the nioxin shampoo which was fine, but the conditioner made me nervous because it was tingly on my head. I believe that is normal, but I'd rather use regular hair products until the other is needed. Thanks so much for any hair advice. I so much appreciate your help.
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Beanius....I would go with the Nioxin shampoo right now. If the conditioner made your head tingle, you might want to wait with that. It never bothered me so I don't know what to tell you to do about the conditioner. I am so glad that #1 went well for you. That's a good indication that #2 will be similar and after a few days you'll be back on your chemo holiday until the next one! YEA!
English_teacher.....good luck tomorrow. We will be waiting for an account of how it goes! I hope you are pleasantly surprised about how well it will go!
I'm off to get something accomplished around here!
Everyone have a good Monday.
Rita
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Well CMFers, I went ahead with TC transaction #3 today at a new infusion center. As my husband said, it was like moving from Motel 6 to a spa! All the nurses had been briefed on my situation, they had the box of emergency meds and oxygen tank standing by, and the primary nurse who looked after me went over the details of my 2 prior infusions with me before we started. It was great! I had no reaction at all, we started at 15% of the normal speed on the T and moved up to 50% and no further. I was there a looong time, but who cares, if I can tolerate this I will be done by the end of the month! Now i just need to get through the next 48 hours without spiking a huge temp. That happened last time and I didn't have any kind of infection, it was just the chemo.
Thanks for all your help and the info, this was a really hard decision, the middle of last week I just couldn't visualize sitting in that chair and letting them put T in me again.
Julia
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English_Teacher; even though I had been through chemo 7 years ago, I was still nervous about my first CMF treatment, not knowing what to expect with the side effects. It wasn't as bad as I thought it would be, had some mild nausea, but never actually threw up.
I've been in menopause since I was 40; my onclogist has had me on Lupron injections every 3 months which stopped my periods.
Beanius, I've had 6 CMFs so far; up until this weekend, I only noticed hair coming out when I washed it, but the other night I was doing some reading in bed, and noticed some long hairs falling into my book. I think my hair looks thinner, but other people tell me that they can't tell that it's thinner, but then, they see my hair after I've styled it, not when I first get up in the morning. But even though it's thinning, it's growing too; I had my hair cut in April and I really need to go get my bangs trimmed.
Tomorrrow I go for #7.
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YEA Julia! So glad it went well for you!
Rita
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Well, number one is out of the way! Like momtoacat mentioned, it wasn't as bad as I thought it would be! I got all three drugs via the IV and we were there for about 2 hours. I asked the nurse about hair loss issue (since I have read and heard huge differences in the amount of anticipated hair loss) -- she said in her 16 years doing this, she has never seen a patient lose all her hair! So that was a relief! I have super fine hair right now and have already purchased a few head scarves because any amount of hair loss is going to show I suspect AND my roots will be popping up any day now since I forgot to get my hair done last week before chemo started.
But the process was pretty painless today! I was given a prescription of Compazine but don't feel sick at all right now so haven't taken it. My onco also wants me to take Pepcid for the next week. I have already starting washing out my mouth a salt/ baking soda mixture to be proactive (I have Biotene coming tomorrow). So that's it! I guess I was almost thinking I might "feel" different but everything seems fine! I went for a long run this morning (have a marathon coming up in Oct) and that seems to have taken most of the stress away for me! Thanks to everyone on helping me perpare for this new experience!
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English- Congratulations! The first is the scariest. Did your Onc give you anti-nausea meds for the next two days? I take Zofran for two days and have not had much trouble with nausea. I'm glad you have Compazine, but I think that is usually given for breakthrough nausea. Usually something is prescribed (not optional) for the first couple days after chemo for the nausea. Maybe some of the other ladies can chime in here. Please do not wait if you start feeling nauseaous. Take the meds! It is really hard to knock nausea down once it gets started. Be sure to drink LOTS of fluids to flush everything out. Chemo is hard on kidneys and liver and you can get bladder infections.
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English teacher.....I was given compazine, too. I started taking it as soon as I finished a treatment and continued to take it for three to four days after the treatment as prescribed. It kept the nausea away. I learned the hard way when I waited for the nausea to hit. It is easier to ward it off than it is to get rid of it once it arrives. I'm glad #1 is over and done!!!!
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Hello Ladies,
I hope everyone is doing well today! I just got back from my 3rd treatment. 3 down 5 to go.. whoo hoo!
However, I was asked if I wanted to switch to a dose dense treatment which will change my schedule from every three weeks to every two. It means I will finish 5 weeks earlier (bonus) but I will need to take a neulasta shot 24hours after each treatment (whammy!).
Does anyone have any feedback with taking the nuelasta shot or doing dose dense treatment on CMF? I know to expect some bone pain but will Tylenol and/or Advil help with the pain?
I want to try this as it will help me finish everything by the end of the year (5 more treatments, 21 days of radiation and a surgery to remove two nodules found on my thyroid).
Thank you and stay stong ladies! Hugs to everyone!
YJK
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YJK,
Take 10mg loratadine (Claritin) the day before, day of and day after Neulasta. It helps with the bone pain.
Julia
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YJK: I had dose-dense CMF wtih Neulasta shots. I think Neulasta affects everyone differently. It seems to be most usual to have pain in the long bones (humerus and femur) and the sternum. In my case most of the pain was around my shoulders and for some reason it affected the soft tissue of my neck too as well as my sternum. I took Claritin the morning of the shot, but I really don't know if it helped but it won't do you any harm. When the soreness/pain was bad, I took Tylenol. I really noticed it more at night.
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Thank you Julia2! I do not have any on hand so will have to pick some up in the am. So I will have to do the morning of and the day after this time around.
MaryNY: I agree with you if the Claritin doesn't do any harm why not try it. My onc told me to take Tylenol if I have pain. She also mentioned the Clariton but suggested I wait until the second time around to see if I need to take it. I figured I have allergies so why not do it now
Thank you ladies, you make the fear of the unknown so much easier to face.
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Ritajean - thanks once again for your excellent advice, it is much appreciated.
Julia2 - glad you got your treatment plan sorted out. It can be so confusing. So glad it went well!! And so glad it will be done soon!!
Mom2acat - thanks for the hair info. So far I may be shedding a little more than usual, but I can't tell a difference. It's nice to keep your hair. I hope #7 went well for you!!
English - So glad all went well for you. I have been using Biotene and I'm glad I got it, I think it helps keep my mouth nice.
QUESTION: All the talk about anti-nausea has raised another question for me. Since I take cytoxan pills every day for 14 days, I start each morning with 8 mg of zofran. I have had no nausea at all, but constipation is a constant struggle. I'm keeping on top of it, but was wondering about compazine. I have compazine, but have not used it. I was wondering if it works as well as zofran but without constipating? I've been doing so well that I'm nervous to make any changes, but maybe compazine would be a good switch from zofran??? Any suggestions would be welcomed!!!!
Yjk2010 - Congratulations on 3 down and only 5 to go! Hurray! I haven't had neulasta so have no advice to share.
I asked my oncologist about starting rads toward the end of CMF due to insurance concerns. (I've met my max out of pocket expense for 2010) I was hoping to get everything done this year to save money. She said it would be possible to start rads in November and then for the last 2 CMF infusions she would drop out the methotrexate, as it's not good to do at the same time as rads. If we go with this plan, I should be done with chemo and rads by end of Dec which would be fantastic.
Hope you are all doing well and having a great summer!!
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Oh Beanius.....glad that you might be able to work all the treatments and rads into this calendar year. Sometimes you just have to be pro-active and ask. As for the compazine.....I used it and I still had the constipation issue. It wasn't too severe and could be controlled with Senakot. (hmmm....did I spell that right???) It's hard for me to say if you'd be better off with the compazine because I have no concept of the severity of your situation on the zofran.
Ah.........neulasta shots! I think that Mary is right. The neulasta shots affect everyone differently. I didn't do the dose dense but still needed a neulasta shot near the end. I had read all kinds of horror stories on here about gals that really suffered extreme joint pain after the shot. I was so scared to have it but must admit that I was lucky. I had no side effects at all from it. I guess it just depends upon our individual bodies and how they tolerate it.
So glad to hear that most of you are just marking these treatments off your calendars and getting along pretty well! You go, gals!
Rita
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I've been a little MIA from commenting, but I've been reading everyone's posts. I'm happy to hear that everyone seems to be doing pretty well. I'm actually on my last 5 radiation treatments after finishing CMF on June 7th. To say I am THRILLED to almost be done with the more aggressive aspects of my treatments is an understatement, for sure. Hard to imagine that it was 10 months ago that I found out about my cancer...some days it feels like yesterday and other days...it feels like FOREVER. I have my script for Tamoxifen and will be starting that in 2 weeks. My onc wanted me to be done with everything else, so it's easier to keep track of side effects. He's not big on overlapping treatments because of that which is fine with me. It's been a long road but I feel blessed that I had all of you to come to with questions and that I was able to even simply read your experiences to make it through. To those of you that are new...this is such a wonderful place to come to...to refer to a little bit or a lot...to simply read or to ask questions and comment. I just had to post a big THANK YOU!
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Oh Judy! It's so good to see a post from you and to hear that the chemo is done and you're about to become a "RAD GRAD!" I'm so glad that some of our posts and support helped you along your journey and so glad that your journey is coming to an end. Please keep checking in every so often to let us know how you're doing as you ease back into your regular routine. Hugs to you!
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Judy - Congratulations! To see the light at the end of the tunnel must be so wonderful. Your experience is an inspiration to me as I'm just now journeying through round #2 of CMF. Rads to start in Nov, then tamox. So glad to hear you are doing so well. Best of luck with tamox!!!!
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Hi Judy!
So glad the end is in sight for you!
Sounds like you're all doing okay! Glad to see that.
Best to all,
CMZ
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