CMF Question
Comments
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So glad t see this thread. I have had 6 CMF infusions. I live in the chicago area and no one, and i mean NO ONE uses cmf here and it makes very nervous! Ive been travelling to NY, to Memorial Sloan Kettering for my treatments. We have had free air fare. But now it has been discontinued and I have two more treatments to go. I just called Northwestern and asked to see someone. The onco nurse called me back. I asked her if they give CMF often. She said that in the past 5 years she's only known one case. U of chicago is the same. Now I'm worried about getting treated somewhere with so little experience. Sloan nurse tells me that about one third of her cases are Cmf!
Anyway, to the question. I still have my hair. It is thinnner but still there. I had a bad cycle last time because i caught a cold and I was really, really afraid that this last one would be even worse.
Surprise! it's a breeze! I think everyone is different in how they react and it seems each cycle is slightly different. I had a lot of trouble with constipation. That was the worst. But they put me on a dulcolax and 3 colace a day and no more problem. I have had some urgency in urinating and barely make it to the bathroom at times. I sure hope that goes away!
My advice, don't worry! Ha! Wish i could follow my own advice.
I have stayed away from crowds as much as possible which is a pain in the neck. I caught a cold on the plane, the man in front of me had it and the plane was delayed. But thank God it did not go into fevers or anything serious, it stayed a head cold.
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So glad t see this thread. I have had 6 CMF infusions. I live in the chicago area and no one, and i mean NO ONE uses cmf here and it makes very nervous! Ive been travelling to NY, to Memorial Sloan Kettering for my treatments. We have had free air fare. But now it has been discontinued and I have two more treatments to go. I just called Northwestern and asked to see someone. The onco nurse called me back. I asked her if they give CMF often. She said that in the past 5 years she's only known one case. U of chicago is the same. Now I'm worried about getting treated somewhere with so little experience. Sloan nurse tells me that about one third of her cases are Cmf!
Anyway, to the question. I still have my hair. It is thinnner but still there. I had a bad cycle last time because i caught a cold and I was really, really afraid that this last one would be even worse.
Surprise! it's a breeze! I think everyone is different in how they react and it seems each cycle is slightly different. I had a lot of trouble with constipation. That was the worst. But they put me on a dulcolax and 3 colace a day and no more problem. I have had some urgency in urinating and barely make it to the bathroom at times. I sure hope that goes away!
My advice, don't worry! Ha! Wish i could follow my own advice.
I have stayed away from crowds as much as possible which is a pain in the neck. I caught a cold on the plane, the man in front of me had it and the plane was delayed. But thank God it did not go into fevers or anything serious, it stayed a head cold.
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My onco tells me arrimidex is 20% more effective in preventing recurrence than tamoxifin.
It's for post menopausal women. It stops the body from converting hormones into estrogen while Tamoxifen stops estrogen. After menopause women don't make much estrogen. The dr told me arrimidex will practically eliminate all estrogen and if you have an estrogen positive tumor that's good. It will increase osteoporosis. but Tamoxifen will increas uteran cancers after 5 years of use.
No one knows how long someone should stay on arrimidex because it's so new.
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My onco tells me arrimidex is 20% more effective in preventing recurrence than tamoxifin.
It's for post menopausal women. It stops the body from converting hormones into estrogen while Tamoxifen stops estrogen. After menopause women don't make much estrogen. The dr told me arrimidex will practically eliminate all estrogen and if you have an estrogen positive tumor that's good. It will increase osteoporosis. but Tamoxifen will increas uteran cancers after 5 years of use.
No one knows how long someone should stay on arrimidex because it's so new.
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I think the reason this latest infusion has been so easy is because i did take my anti nausea meds. I had been trying to tough it out. I don't like meds. But it was silly. This time has been so easy!
I have my infusions every 3 weeks and I the last week and a half I feel almost perfect.
Rita jean, that photo of you is incredible and so encouraging! You're gorgeous!
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Patty: Thiking about you today and sending some good vibes your way.
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could someone help me with another question. I have been pretty happy so - one intravenous CMF treatment a week ago yesterday, and no really bad side effects. Had Neulasta shot last Monday- my blood count was lower than my oncologist liked, so gave the shot. in fact, it appears I have in the past had low normal white blood count.
my blood test yesterday showed the Neulasta shot upped my white blood count significantly, and I had not had anything bad from it. I did notice a little bit of backache within last few days,but just felt I overdid it in the yard. But then last night, I had more of a backache......and then woke up at three am with a terrible backache and a headache worse than a migraine. took Benadryl and tylenol (which I had been on first 2 days after the shot), and finally with Ice -then heating pad, felt better. My onco today said must be delayed reaction, but sort of unusual.
has anyone had Neulasta shot, and any tips about side effects.....last night was pretty terrible.
thanks,
Carolyn
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Welcome Packy. I've been off the boards for a couple of weeks because I'm basking in the sun in Florida and having a wonderful time. It looks like the awesome gals on this site have given you wonderful advice. CMF is very doable. It won't take you long to pin-point the things you need to do to help get through it. I did have neulasta shots but I didn't have any side effects at all from them. I had read posts from gals who felt achy and fatigued but I guess I was lucky. I'm sorry that you're experiencing the headaches and backaches from it.
Timbuktu...They are still doing CMF in my area of the state. It's mainly used for gals who are Stage 1 or who appear in the "gray" area of the ONCO tests. Many oncs still think it's a great option for those who don't really need the "over-kill" from the other chemos. Also, thanks so much for the compliment! You made my day!
I have been on Arimidex for nearly 5 years. I imagine my oncologist will discuss discontinuing it or staying on the drug when I see him next time. That should be an interesting conversation.
Hang in there, Carolyn. Do you have 6 or 8 treatments of CMF?
Rita
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Welcome Packy! I had neulasta shots (2) during my CMF and had 7 days of bad se's -- worse than the txs! The back pain was severe so you're not alone. The CMF is very doable as everyone else had told you. Hope any further neulasta shots will be better for you.
Ritajean - I am now on aromasin and am tolerating it very well. Guess it's what I'll be on for the next 5 years. Am having a bone density test next week. We just returned from an 11 day cruise of the western Caribbean - love that warm weather!
Later....
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Hi Carolyn:
I had Neulasta shots and the side effects (flu-like symptoms) did not occur until 24 to 38 hours after the shot. The side effects vary from person to person. Some people find it helpful to take an antihistamine (I think Claritin) has been sugggested the morning of the day one has the shot. I did that but can't saw it made a difference.
Hi Timbuktu:
I wouldn't be too concerned about having the last two treatments locally. The oncologists should be familiar with CMF from the past when it was more standard. Also I presume they can consult with your doctors at MSKCC to ensure that you are given the same dose. Since you already have six doses under your belt, you also know what to expect with regard to SEs. Traveling to NYC for your treatments must have been exhausting. Could you ask your oncologist at MSKCC for a referral to someone they know in Chicago? Or do you plan to continue to travel to NYC for all your follow-up visits?
You mentioned earlier that an onc nurse at MSKCC said her experience is that CMF is used in about one-third of BC patients. I really think that is an over-estimation. You just need to look at any of the "starting chemo" threads. TC, AC and AC-T are used far more frequently. I was treated at MSKCC too and was under the impression that it's mainly used in older patients or those with less agressive tumors with no node involvement or those with low Oncotype scores (say less than 12). I know I don't fall into that group -- I was treated initially with AC but wasn't tolerating it well so onc decided to back it up with four treatments of CMF. TC would have been the typical choice with my diagnosis but that was decided against because of my previous medical history.
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Hi Packy!Sorry that you are having pains from the neulasta shot. I never had one so I can't tell you about it. But there is a thread somewhere on bc.org where women found that Claritin D heled with that pain. I am not good at looking things up on this site so I am afraid someone will have to help you with the research.
Timbuktu: I think MaryNy gave good suggestions for how to find someone who will use CMF locally. I can't vouch for statistics but at the time when I was on chemo, 2008-2009, Sloane Kettering did use alot of CMF and I do not think it was limited to the elderly or those only in early stages of the disease; same is true for cancer centers in Seattle. In fact, oncs at two major cancer centers thought CMF was fine for me even with a positive lymph node and I do not think I was elderly or frail at the time. :-) My onc explained that she used CT because it was faster---only 4 tx instead of 8 with CMF and that she found that her patients got tired of being on chemo and would stop (and my onc is the chief at a major Cancer Center so she is not 10 years behind the time). Nevertheless by the end, I was sick of it, but still glad that I had agreed to it. For me it was a "doable" chemo.
Ritajean: Enjoy Florida and the sun!!!
Hope everyone has a nice day today!
Mandy
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Hi Carolyn,
I had Neulasta for the last 3 of my 6 CMF infusions. My side effects started a few days later and I must say I was quite miserable. All of my bones hurt. It hurt to put clothes on. It even hurt to shower. I tried the Claritin but not sure if it made a difference. I generally felt better after 3 days. I just tried to remind myself that it would get better and as bad as I felt, that shot was keeping me working and out of the hospital. You may want to ask you doctor if there is anything else you can take for the pain. Hang in there!
Denise
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Hi Mary,
Yes, I'm in the gray zone with one micromet and a fairly low oncoscore of 14.
My husband insisted we finish at sloan. Just two more infusions. I don't understand why there is this geographical distance in treatment. My surgeon at U of Chicago said that CMF is "before her time".
yet where ritajean lives it's still in use, and of course in New York. And Sloan is the go to place so I have to believe that they know what they're doing. I do have high blood pressure and borderline diabetes so I wonder if that was why they prescribed cmf? Who treated you at sloan?
my onco said that she didn't think mysituation warranted the side effects of the other treatments.
I can't really figure it out.
I do wish i was on the arrimidex though, since that's supposed to be the best treatment and times a wasting. I don't like to think of how much estrogen i have coursing through me.
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Hi Mary,
Yes, I'm in the gray zone with one micromet and a fairly low oncoscore of 14.
My husband insisted we finish at sloan. Just two more infusions. I don't understand why there is this geographical distance in treatment. My surgeon at U of Chicago said that CMF is "before her time".
yet where ritajean lives it's still in use, and of course in New York. And Sloan is the go to place so I have to believe that they know what they're doing. I do have high blood pressure and borderline diabetes so I wonder if that was why they prescribed cmf? Who treated you at sloan?
my onco said that she didn't think mysituation warranted the side effects of the other treatments.
I can't really figure it out.
I do wish i was on the arrimidex though, since that's supposed to be the best treatment and times a wasting. I don't like to think of how much estrogen i have coursing through me.
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Hi Mary,
Yes, I'm in the gray zone with one micromet and a fairly low oncoscore of 14.
My husband insisted we finish at sloan. Just two more infusions. I don't understand why there is this geographical distance in treatment. My surgeon at U of Chicago said that CMF is "before her time".
yet where ritajean lives it's still in use, and of course in New York. And Sloan is the go to place so I have to believe that they know what they're doing. I do have high blood pressure and borderline diabetes so I wonder if that was why they prescribed cmf? Who treated you at sloan?
my onco said that she didn't think mysituation warranted the side effects of the other treatments.
I can't really figure it out.
I do wish i was on the arrimidex though, since that's supposed to be the best treatment and times a wasting. I don't like to think of how much estrogen i have coursing through me.
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Yes, mandy, that's what my U of Chicao onco said, that he preferred 3 months to 6 of chemo. He did not say why. But I am pretty darn sick of the chemo and i can see why people would quit.
The dr here said 6 is as good as 8 infusions. Actually two drs told me that. But when i asked the sloan dr she said it has never been studied. I just hope it's doing it's job.
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Yes, mandy, that's what my U of Chicao onco said, that he preferred 3 months to 6 of chemo. He did not say why. But I am pretty darn sick of the chemo and i can see why people would quit.
The dr here said 6 is as good as 8 infusions. Actually two drs told me that. But when i asked the sloan dr she said it has never been studied. I just hope it's doing it's job.
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Hi Timbuktu:
My impression is that MSKCC tend to be more aggressive with treatment, and are perhaps treating some BC patients with CMF who at another facility might be told they didn't need chemo either because they were borderline w regard to diagnosis or had other health issues which made chemo risky. I had three prior onc consultations before I went to MSKCC. One of those suggested that I might not need to have chemo. Maybe your onc at MSKCC could throw some light on the geographic variation in treatments.
I do think your high blood pressure and borderline diabetes would have been factors in deciding on the best chemo treatment for you. In my case it was my prior medical history that decided that I would have AC rather than TC.
I think most places will not start you on Tamoxifen or an AI such as Arimidex until you've completed chemotherapy. If they started you now and you had side effects, you wouldn't know whether to attribute them to the chemo or the AI. I presume that the AI could also interfere with the effectiveness of the chemo drugs.
Sending you a PM.
Mary
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I also went to memorial sloan kettering and I was told to do CMF but I opted for ac because the research they handed me said CMF = rad+hormone so why do I want chemo?
ALso, I can't afford to go every time either (time) so I went to onco here and was stick to the AC, I had one CT but CT killed me almost so changed to AC
Bela
PS Its so confusing what to do
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I had my first CMF treatment on 1/31/2012. So far I have had no serious side effects, except maybe a day or two of fatigue. Going for 2 tx on 2/21. As I have read in previous posts, I was wondering why onc recommended CMF since it is an "older" treatment. My onco score was 27 .. onc felt the CMF is more tolerable and would be just as effective for my type of cancer. I am 71 years old and in good health. The previous posts on this thread will be very helpful as treatment progresses. Thank you all for your help.
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I finished CMF last July. I am 73 and also in good health. My onc felt that CMF was not as hard on the heart as AC. My onco score was 24. CMF is very doable. As said previously, the neulasta shots had more se's than the CMF. Good luck to you!
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golfergrandma: Thanks for your response .. it makes me feel much better since I don't hear much about CMF, except on this thread. One question: did you have any hair thinning or loss?
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Hi smva!
I did have some hair thinning...I lost what seemed like alot of hair after my 4th tx. My scalp started to tingle...even my onc thought I might lose my hair. But I did not. I had cut my hair fairly short at the time and was able to hide the thinning with a hair cut. In my case it really was not major. I used the Nioxin shampoo products that Ritajean had suggested and I only washed my hair every second or third day rather than every day as I usually do....so perhaps that helped too.
I think that many gals do so well on cmf that they don't write in. I had alot of the side effects but it was a doable chemo.
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Mandy1313: I read your previous post .. did you have CMF or CT? Wasn't sure since you mentioned both. Thanks for your reply.
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smva - I had severe hair thinning (my hair is short) and wore a wig for awhile, but my hair came back quickly after last tx and is now very thick and curly. Most people do not noticeably lose their hair on CMF. I think I was an exception.
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smva: I had cmf and did not lose much hair...never needed a wig or even a scarf. I think each person is different and while many do not lose hair with cmf, some, such as golfergrandma, do lose some hair.
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Thanks Mandy .. I did order the Nioxin Stage 4 cleanser and scalp treatment (for thinning hair) as recommended by ritajean .. maybe that will help me keep the hair I have .. I'll keep checking this post for additional hints.
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Had my second CMF treatment yesterday and all went well .. so far no side effects except slight thinning of hair, only noticeable to me. White counts did go down but came up by the 2x treatment. Hope it continues this way for the next 6x. Hope everyone is feeling and doing well.
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Hi smva!
Glad to hear that tx 2 went well!!!! Keep up the good work, but don't be afraid to complain if things aren't perfect...we've all been through this and are happy to hold your hand.
Hugs
Mandy
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Has anyone experience poor eyesight from CMF? One dr. told me it will leave when I'm done, another said maybe not.
Had my 7th infusions two days ago. Just one more to go.
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