CMF Question
Comments
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Just popping in to wish you all a very Merry Christmas.
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Hi there!
Adding to Ritajean's holiday wishes. Hope that everyone has a wonderful holiday and wishing everyone, and especially you gals in treatment, all things wonderful! Many hugs, Mandy
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Thanks for those glorious photos...I want to go to holland!!!
The surgeon told me I was over the chemo when I was only 3 months from the last infusion!
Boy did that depress me! Then I called the onco and was told that the stuff stay in your body for a full year! Only after a year do you start to feel sort of normal! That was a great relief because being told that I was "over" the chemo ...I couldn't believe that I would have to go through life feeling that way forever.
I guess we just have to hang in there and hope for the best! And get tickets to Holland!!!! ;-)
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and Happy Hannukah to those who have just celebrated that holiday!
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We're taking off tomorrow for Christmas with my son and his family. May we all remember the true meaning of Christmas as we tear open our packages! Merry Christmas to all of you! Enjoy your holiday annd may 2013 be good to all of us!
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Wishing all of my friends here a Happy Holiday which ever ones you celebrate.
Hugs, Mandy
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I had my fourth-to-last infusion the day before yesterday. Only three more to go! But one is the day after Christmas and one the day after New Years (yuk!), so I am more looking forward to my birthday, which is two days after the Last One. The fatigue really hit me this last time, so after another three I don't expect to be in much shape to celebrate, but even if I'm knocked flat, I'll be SO glad to have put this phase of treatment behind me! Then it'll be the "3 R's" (rest, recuperation and remodeling my house) for the next few months, and a fourth R (reconstruction) the end of next April.
Here's hoping 2013 will be better than 2012 for those who have had a tough time of it these last 12 months, and even better than 2012 for those for whom the past year has been a good one!
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Hello All...New to this site. I start CMF on January 2nd, I will take the Cytoxon (oral) every day for 6 long months, the Methotrexate and the 5FU will be by weekly IV infusion for 6 months (no breaks). I have read many pages in this forum and I don't see anyone that is on this same regimen.
I have already tried cytoxan and taxotere turns out I'm allergic to the taxotere, it was one of the worst weeks of my life!!
I have an awesome MO and he and the wonderful nurses have provided me lots of information but if theres anyone out there on this regimen I would love to hear how your doing.
Thanks so much!!!!
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@Curveball..Thanks so much for your response, WOW congrats on only have two treatments left I cant help but be a bit jealous wish I was almost done and not just starting. Did you have cycles for your treatment or did you receive your treatments everyweek without a break? How were your side effects with this treatment? I'm also assuming you took the pill everyday?
I am west of the Mountains I'm on the Kitsap Peninsula and receive my treatment in Gig Harbor, what about you?
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@Atall5, I did not have cycles, since I started in the middle of July, I have taken cytoxan pills every day and had infusion of methotrexate and 5-FU every week, straight through.
The main side effects I have had are fatigue and gas/bloating. The fatigue did not get really severe until the last few weeks, but even a month or two into treatment I had to be careful not to do anything even remotely strenuous the two days after the infusion, or I'd be knocked flat. If you are reading through the whole thread, you will eventually get to the part where I made the mistake of going house-hunting two days after treatment. The last few weeks I have been a little tired all the time, except when I was more than a little tired, and right now I don't feel like doing much but lying around in my pajamas listening to audiobooks. I'm off work until Jan 3 and was planning to try to get some estimates for the repair work I need to have done on the house I bought, but I've decided to put that off until after the last treatment, and maybe a week or two past that. I've been told that chemo fatigue can take as long to go away as it did to come on, but I hope that also means the really heavy fatigue of the last few weeks will only take a month or so to get down to a manageable level, even if it takes another several months after that to get completely back to pre-chemo energy levels. That wouldn't surprise me especially since I am planning on having reconstructive surgery the end of April.
The gas and bloating has been really annoying and sometimes uncomfortable, but not much more than that. My oncologist said I could take simethicone (an OTC anti-gas med) for it, but I am so nervous about putting meds on top of meds and then taking another med to deal with the side effects from the others....ad infinitum....that I didn't actually start taking it until two weeks or so ago. It does help some, but doesn't completely get rid of all the bloated feeling.
I did have some hair thinning too, but my hair was so thick to start out with that it's not really noticeable.
During treatment I am staying with my Mom in Seattle, but the house I bought is in Lacey. I am being treated at Group Health on Capitol Hill in Seattle, but will be getting a referral to an oncologist at the Olympia GHC when I move.
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Isn't it strange how geography determines treatment?
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@Timbuktu, now you have me curious. What would be offered as an alternative to TC where you come from? (and where is that? It doesn't say in your signature.) I turned down TC because of the risk of permanent baldness, Atall5's onc took her off it due to an allergic reaction. Is some other regimen the main alternative to TC in other parts of the country and/or other countries?
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I can't remember if it was TC or AC but, at least in Chicago, CMF is rare.
Memorial Sloan Kettering recommended CMF. They do 15 infusions / day. I asked the Sloan dr about TC or AC (sorry, chemo brain can't remember) and she didn't like the need for steroids as I have high blood pressure.
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@Timbuktu, when I asked my onc what my other alternatives were, he said CMF or AC, but recommended against AC because of the danger of heart damage, and that it was more aggressive than needed for my diagnosis. If I had gone ahead with TC (the original recommendation) I would have had steroids too.
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Yes, thanks for reminding me. AC has the risk of heart damage. It must have been TC that was the chemo offered. although they didn't even recommend that here because they said it would give almost no advantage. I think they said 1% and that's not worth it given the 1% risk of complications. But Sloan dr said CMF would give 3% advantage with no
permanent side effects. Sloan dr. felt that the CMF has such a long track record and the AI's are so new, it was best to use the tried and true treatment just on the chance that some cells had escaped.
I just re read your question sorry I'm not being clear.
The recommendation here, in Chciago, was to just take the AI's. That was from the university of Chicago, Northwestern and Evanston Hospital. In New York, Columbia concurred with the Chicago drs. Just take AI's.
Sloan dr suggested CMF first, then AI's. They were the one's who discovered the micromet. But still, when I told the other drs. about the micromet, they still said just take AI"S.
I think it's good when a dr tailor's the treatment to the individual. I just don't understand why treatment should be different in the Chicago area vs Washington State or New York.
BTW, one onco told me that they used to give CMF orally but not anymore.
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@Timbuktu, I think you got a "no chemo" recommendation because of your low Oncotype score. I did a search and read on another thread yours was 14. Mine was 28, which is close to the high end of the gray area. I will be starting an AI as soon as I finish chemo. But with a low score like yours, the risks of chemo outweigh the benefits. I think if I had had such a low score, I would have gotten the same recommendation (no chemo) here on the west coast. (edited to correct Oncotype score)
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Timbuktu: My best guess is that your MSK doctor probably looked at the micromet and decided not to take a chance. I had similar mixed advice because of a low oncotype like yours (14) with one cancer center saying to do chemo and another saying not to do chemo. However at the time, four years ago, the only study of people who had low oncotypes and were node positive had such a small sample, that you could not say whether node positive people would benefit from chemo or not. I do not know whether other studies have been done in the interim or not. However, I decided not to take a chance because I did not want to look back and find that a later study found something different for node positive women so like you, I did CMF.
Mandy
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Hello Ladies...
@ curveball...thank you for filling me in on your SE, things were so bad with my previous treatment that I'm super nervous about even having chemo again. My MO told me there would be hardly any SE with this treatment VS the other I had. I read about you hair, here is the real bummer I had the one treatment of TX and that's all it took to lose my hair so now I'm bald and like you I had very thick hair. Dr told me It may start growing right back now, which it seems to be coming back a bit.
Like a lot of you ladies I was concerned about this treatment as well, I did a ton of research and read loads of information and was armed with my questions when I went back for an appointment. I now feel comfortable with this treatment plan, with one exception the length of time is a super bummer!!
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Yes, Mandy and Curve, that's how I understood it.
We have a friend who is a pathologist who trained at both U of Chicago and MSK and according to him the onco score is not a slam dunk. There are still questions about it. My dr at U of C said, no, it's a certainty. It's more important than size of tumor,grade, anything else. While I'd like to think so, I'm always wary of such certainty.
The MSK dr was not certain of anything and that made me trust her! lol
The MSK dr said that it can only be a 3% benefit but "If you are one of the 3% it's a lot" and I liked her reasoning. lol Statistics don't really apply when it's your life on the line. Also, age matters. She said if I was in my 70's she might not suggest chemo but at 63 she said I could go another 30 years (God willing) and that is a long time for the cancer to come back. I like a Dr. who doesn't go by the book but individualizes.
People have also told me that cancer centers like MSK are more aggressive in treating cancer. There is a utube of the head of the hospital that addresses this issue. He says that some think that they "overtreat" but there are a lot of lives on the line.
I think making this decision was by far the hardest part of the journey!
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@Mandy1313, there is a study currently in progress about use of Oncotype testing for node-positive BC. When I got my test results, there were 5 year survival curves for various scores with positive nodes. The data for node-negative BC went out to ten years. I was going to participate in the study, but my score is outside the eligible range. I guess at the time you were being treated, that data wasn't yet available.
The way I see in which Oncotype is not a "slam dunk" is that there is such a big gray area. With a low score or a high score you know pretty much where you are, but with an in-between score nobody knows yet whether the risk or benefit of chemo is greater. I also wonder if the Oncotype score takes one's age into account.
I had a harder time deciding between LX and MX. Once I saw my Oncotype score I no longer had any doubts about doing chemo.
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@Timbuktu, what your doctor says "it matters a lot if you're one of the 3%" was exactly how I felt about the 3% risk of permanent hair loss with Taxotere (I have heard both 3% and 6% quoted as the proportion of those treated with Taxotere who have persistent hair loss). I didn't think of it at the time, but I guess erring a little bit on the side of being aggressive (by having chemo with an Oncotype score in the gray area) is appropriate for my age too--I'll be 57 next month.
@Atall5, I got my hair cut short when I started chemo. What hair stayed on my head (which was most of it) has grown considerably, so I think there is every chance your hair will come back even while you are doing CMF.
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My hair thinned on CMF but there was enough that I looked "normal".
It's come back again although, with age, my hair had gotten thinner even before chemo.
Hair...give me a head with hair! lol I really thought it was irrelevant in choosing treatment.
But when it started to thin...it scared me. I was surprised by how much it effected me.
It has a big impact.
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Hi ladies
So glad i found this thread!
I will be starting CMF x 3 on 2nd Jan
Day 1 & 8 IV M&F bit then Day 1 - Day 14 Oral C bit then a week break.
Ive finished 3xtaxotere and the SEs weren't very pretty. Hair still some there, though I use my wig to go out. Eyebrows and lashes have thinned!
Can hair come back on CMF?
How where your SEs on CMF? I see fatigue plays a major part....not too concerned as at the moment as much as I am tired I have self diagnosed insomnia...lol
With the C Bit for you that are taking this oral...any SE I should be aware of? I have an active 3 year old and a little worried re this regime!!! O have mum for back up with my son while hubby works just incase!!
Oh and another question...did anyone have Neulasta shot? My onc seems to think that the week break is not enough time for this to be given....so its a wait n see kind of thing as to how WBCs go.....??
Thanks for your wealth of info...havent had a chance to read all yet!0 -
Thank you so much for giving me hope that I won't have to wait 6 months to see my hair start growing back. Hair should seem like the least of our worries but when your head is bald it's not very much fun!!
Happy Friday to everyone!!
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@Traii I don't know if it's possible to compare directly between every day CMF and 14 days on/7 days off as you describe, because you may be getting a higher dosage at one time than those of us who take the cytoxan continuously. However, if it is the same dosage as CMF with no breaks, I don't think you will have a problem. You describe 3 rounds of 14 on/7 off--that is 9 weeks in all or about two months. Two months in on my treatments, my energy level had not dropped much. I probably wouldn't have been able to keep up with a 2-year old even before I started, but if you can keep up before treatment, I think you will still be able to after 3 months of treatment. I don't know if there is any difference in SE between oral cytoxan and IV.
I did not have Neulasta. That is for low white blood cell count, right? I just had a blood check last week and although my WBC are down, they are not low enough my onc felt anything needed to be done about it.
My sleep pattern is all messed up too, but I think that's more due to working from home and not having to keep regular hours at all, plus taking naps in the afternoon (which I need due to fatigue) has always messed up my sleep. I think once I finish chemo I may talk to a naturopath about melatonin and maybe getting back into a more regular sleep cycle.
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@Traii..I had the Nulasta shot with my previous treatment, you will need to be sure that you take Clairton for at least 5 days starting the day you receive the shot. I still had body aches with the clairton but hear it's much worse without it. Good Luck to you!!
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My wbc was in the normal range for almost the whole time. The last infusion it dipped below normal and as I was going on a flight he insisted I have the neulasta.
The worst se I had was constipation. I tried to endure it for 2 weeks, not realizing what was going on. I finally broke down and called the onco. Don't be like me, call right away! three stool softeners and one laxative a day took care of it. Don't suffer!
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@curveball - how is your CMF given ? do you have cytoxan orally ?
they say I will start on the 2nd Jan and finish on the 15th March providing that my WBC are not low. (Neulasta you are correct makes them stay within limits if taken 24 hours prior to chemo)
Thanks for your info on how you have felt throught out your CMF journey....lol yes keeping up with a 3 year old is hard work without chemo let alone with....but it's manageable, well it has to be right !
I think my sleep patterns were a little all over the shop so to speak when i became a mum, just of recent it got worse with the 'insomnia' bit....I'm averaging 4 hours sleep and a little nap in the arvo and I'm ok......naturopath is a good idea re sleep, may go see one after i finish chemo
@ 45Atall - I currently had the Neulasta shots after my Taxotere however with the CMF onc doesn't recommend it because apparently Neulasta and chemo can counteract eachother and he said Im better off not having it....do you have a interval inbetween your regimes?
I just need all my facts right when I see the onc on the 2nd Jan as I would prefer to have the Neulasta shot and bare and grin the SEs as I have been if its going to help me in the long run with my counts !
@timbuktu - thanks for your info....yes your onc would suggest neulasta if you are going to be in 'confined space' on a flight......when i had my shots I would still go out and enjoy life...we can't just sit around wrapped in bubble wrap now can we......I sure didn't and my counts were fine.....even when my son had a throat infection I thought here we go, no chemo for me the following week, but they were actually higher then when I first started chemo.....go figure !
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