CMF Question
Comments
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lokimax-I have had all my infusions without a port. The MO said cmf is not harsh on the veins. I have not had any issues. I used Restasis for yrs, but after a couple of weeks of chemo I stopped because for some reason this chemo makes my eyes water. Restasis works great, but it is very expensive. Over 200.00 a month.
Did your blood work come back so low that the Neulasta shot was necessary? I am starting round 5 on Wednesday and haven't had to go that route yet. I would ask if it is necessary. I for one don't want anymore meds than I have to take. Are you getting all of your chemo in IV form or are you going to take the Cytoxin in pill form?
My voice hasn't been the same since the start of chemo and I got a bad headache one time when the nurse pushed the chemo thru in under 2 minutes. I don't let her touch me now. I get another nurse.
I hope you feel better and have a great weekend, Diana Rose
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Now it's not so much the dry eyes but the horrible headache. The headache is so bad it's causing nausea. So I don't know whether chemo is causing it or the headache.
Because the Onc is doing dose-dense CMF he is giving me neulasta. But if its causing this terrible headache, I'm not sure I can keep doing the shot unless I absolutely have to. All my drugs are by IV. I've done nothing but sleep or lay in my dark room since my neulasta shot Saturday morning. Not sure how I'm gonna drag myself to work Monday.
I'm gonna call my doc on Monday to discuss. Only got to talk to on-call guy today to find out which headache medicine I could take.0 -
Hi lokimax!
Sorry that you are feeling so down right now. Your nausea may be either chemo induced or neulasta induced. So I'd suggest that you take the anti nausea meds that were prescribed with your chemo (if you haven't already done this).
I never had a neulasta shot so I am giving a suggestion based on others--from what I read, your headache and any bone aches are likely from the neulasta shot. Claritin relieves alot of the pain from neulasta shots. Most of the people took the claritin the morning before the shot...but if you are as uncomfortable as you appear to be, there would be no harm in trying a claritin pill now. And I would call your onc's service again and ask for someone to help you. You don't have to be in that much pain--there are things they can do to help you, even over the weekend.
Hugs.
Mandy
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Hi lokimax!
Sorry that you are feeling so down right now. I never had a neulasta shot so I am giving a suggestion based on others--from what I read claritin relieves alot of the pain from neulasta shots. Headaches and bone pain are not unusual with the neulasta shots. Most of the people took the claritin the morning before the shot...but if you are as uncomfortable as you appear to be, there would be no harm in trying a claritin pill now. And I would call your onc's service again and ask for someone to help you. You don't have to be in that much pain even on dose dense CMF.
Hugs to all.
Mandy
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Hi lokimax-I am getting dose dense as well and my doc checks my blood and says that I don't need the shots and that I must have good bone marrow. I would ask for your blood results prior to your next infusion and not get the shots if your counts are ok. Getting it when you might not need it is unnecessary pain for you. My MO doesn't like to give me anything unless it is really necessary. Don't be afraid to speak up and ask questions. I feel bad for you. I get my blood drawn prior to chemo and a copy of the results. I hate needles so if I don't need the shot I am not going to let them give me one. I hope you start to feel better.
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Lokimax, I hope you can do what Dianarose is doing. There is no need for medication that you do not require. She is so right about speaking up and asking whether it is necessary and why. . All the best.
Mandy
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Lokimax: I had problems with headaches too after my first chemo treatment. Someone on another thread suggesting asking the nurse to slow down the drip and that helped with the feeling of congestion I was getting at the time of infusion and the headache that followed. The Cytoxan (cyclophosphamide) causes eye problem in a a lot of patients. Mine would water a lot and weeks into treatment they were constantly watering so I would tend to rub them making them worse. Eye drops should help but I would tend to stick with eyedrops that are mostly saline without any of those additives that claim to take the red out as the additives in those can make things worse. Eye compresses can be soothing too.
If you were already feeling lousy after the chemo and then had the Neulasta shot the next day, no wonder you feel bad. Another factor to consider is that you just had the port put in two days earlier. I know it's minor surgery but it's still another stress on your system between fasting, having anesthesia and the possibilty of the incision being infected (you mentioned being on antibiotics for that).
Hope you are feeling OK for work tomorrow.
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@lokimax, do you have the option of taking a sick day? It sounds to me as if it would be justified. With a terrible headache you won't be able to do your best work anyway, and you won't do yourself any good if you "run yourself into the ground" by working when you are already under a good deal of physical stress with recent port installation, reactions to meds, plus a possible infection. Just a thought. Speaking of which, time for me to hit the sack.
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So good to see you ritajean. Not only that gorgeous photo but the tales of hard labor are so inspiring! You give me hope!
Interesting about the CMF. I live in the chicago area and no one uses it. I don't know why. I went to New York for treatment. Northwestern said that they've done one CMF in the past 5 years. Head of the breast center at U of Chicago said "CMF is before my time". She also mentioned a shortage of methyltraxate. I wonder if that has something to do with it?
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Can anyone tell me how long after chemo did your taste buds return? Also for those who lost a great deal of hair, how long did it take to start growing back? I am done all chemo November 5th and want something to look forward to other than wonderful radiation.
Timbuktu-My MO said CMF is not used much anymore because no one holds the patent to it because it has been around for 30 yrs. In other words it is cheaper than the newer chemo's. When I did my research the survival rate difference using CMF verses the newer chemo's was only 1%. I didn't want all the harsh side effects as I am a single mother and needed to be able to work and take care of my son. My oncotype score was only a 6 even with 17 positive nodes, so chemo might not do a dam thing for me. Well, it has shut down my ovaries which is a good thing. I am not liking the hot flashes though. I haven't heard of any shortage of Methotrexate.
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Timbuktu....They are still giving CMF in the Bloomington area for early stage diagnosis.
Lokimax....the gals have given you great suggestions. I agree with Mary on the headaches. Ask them to slow down your drip next time and see if that makes a difference. It did for me. Everyone is different and part of the journey is finding out how your body reacts to the chemicals and how to work best around any side effects that occur.
Lemon drops.....the old-fashioned kind with the sugar on the outside.....help me squelch nausea. You can still buy these drops at most Walgreens. I lived on them! :-)
Be sure to drink plenty of fluids after your treatments.
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Timbuktu....They are still giving CMF in the Bloomington area for early stage diagnosis.
Lokimax....the gals have given you great suggestions. I agree with Mary on the headaches. Ask them to slow down your drip next time and see if that makes a difference. It did for me. Everyone is different and part of the journey is finding out how your body reacts to the chemicals and how to work best around any side effects that occur.
Lemon drops.....the old-fashioned kind with the sugar on the outside.....helped me squelch nausea. You can still buy these drops at most Walgreens. I lived on them! :-)
Be sure to drink plenty of fluids after your treatments.
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Timbuktu....They are still giving CMF in the Bloomington area for early stage diagnosis.
Lokimax....the gals have given you great suggestions. I agree with Mary on the headaches. Ask them to slow down your drip next time and see if that makes a difference. It did for me. Everyone is different and part of the journey is finding out how your body reacts to the chemicals and how to work best around any side effects that occur.
Lemon drops.....the old-fashioned kind with the sugar on the outside.....helped me squelch nausea. You can still buy these drops at most Walgreens. I lived on them! :-)
Be sure to drink plenty of fluids after your treatments.
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@dianarose, I guess I am just clueless but your MO's remark really confused me. I would have thought that cheaper and very nearly as effective as more modern chemo regimens would be a point in favor of CMF, not a reason it isn't used much nowadays! My medical coverage is a health cooperative, and maybe the influences on which treatment options are offered is different for the doctors in this system than in a private practice or hospital setting. It's a puzzlement.
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Dianarose: It takes a while but your tastebuds will return. I know that within 2 months mine were back to normal and that within a month, I fully enjoyed a meal at Chez Panisse. There is a light at the end of the tunnel.
Adding to the earlier discussion, I think CMF is used by some institutions more than at others. When I first consulted, an oncologist form Dana Farber said that while every doctor likes to think they are completely original in what they do for each patient, that institutions get comfortable with one chemo over another...at that time she said that Dana Farber was using alot of AC, and she gave as examples another institution that used alot of CT and a third that was using alot of CMF. When I first started on the board there were a bunch of gals from the Seattle area on CMF and a couple from New York on CMF, not all with the earliest of cancers either. So I think the best thing is to do your research and be comfortable with your decision and with your oncologist.
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Dianarose: I wonder did you misinterpret what your oncologist said to you about CMF? You make it sound as though he was saying that there is a huge conspiracy to force women to use newer drugs not because they are more effective but because they are more expensive so the treatment centers and oncologist stand to profit more from them. Did he refer you to any studies that show CMF to be as effective as the newer drug regimens such as AC, AC-T and TC?
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I have nothing to add about drains except that mine made a weird sound when it was pulled out, so be prepared for that! It did feel kind of strange, but not painful, when it was pulled out.
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http://annonc.oxfordjournals.org/content/early/2011/06/29/annonc.mdr309.full
Maryny- here is one of the studies. It is long and you have to read it to the end. You also have to remember that my onco score was only a 6 even though I had 17 positive nodes. Any type of chemo might not do me any good. I am not sure why he said what he did. Maybe he didn't mean to say it out loud.
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Did anyone experience high liver enzymes while doing cmf? MO said mine have been high and were high again today. He said he is hoping it is from the chemo. I really don't want to think about what else could cause this. I am stressed enough.
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Yes, and I caution you to have the situation checked by a GI doctor also!,!
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I had elevated liver enzymes after chemo. But others have reported elevated liver enzymes during chemo. If you search for liver enzymes you will find lots of other posts on that topic.0
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I also had elevated liver enzymes during chemo and for a short while after chemo. They are fine now.
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Thank you everyone for the good advice. I knew about the claritan and was taking it. The RN thinks the headache may be from the zofran drip. The headache didn't start until the next day after chemo.....I think. Now I cant remember exactly when it started! I went to work for two hours on Monday and just didn't think I was gonna be able to continue doing this: chemo & work. But by Tuesday afternoon I felt better and work the majority of the day. Worked the rest of the week. My mother is cooking for us and the ladies at work are providing one meal a week which is really helping.
They didn't use my port last Friday because they thought maybe my incision was inflammed. They erred on cautious side and used my hand and put me on antibiotics. Yesterday I was looking forward to being done with antibiotics but they prescribed another 7days. I think my chest is sensitive to the dermabond they used. I didn't have a problem with it with breasted surgery but the port area doesn't seem to be handling it well.
So,ive been thinking that the antibiotics were tearing up my stomach and causing diarrhea. But now I think its the CMF. I have to make sure ive got a bathroom nearby! Have terrible gas pains, cramps and diarrhea. And sometimes its unpredictable. I have a 45 min commute and had to make an emergency stop before i even got out of town on my way home the other day!! Once it passed I sat in car a few minutes to make sure I wasn't gonna have to go back into burger king's nasty bathroom again. I was seriously contemplating driving across the street to use McD's bathroom -hoping it was cleaner and from being embarrassed from going back inside BK again. Lol! Afterwards I kinda laughed to myself about the sick humor. I do carry one of those large plastic vomit containers from the hospital-the kind they usually give u to use for a sponge bath, in my car. I told my best friend that I guess if I got in dire straits on the commute (that is out in the middle of nowhere once you leave town), I could use the bucket for the opposite "End" in my minivan! That would be a sight to see, for sure!!</
Had a sad visit to my hairdresser today. Could only get the hair trimmed. No Color for my roots or highlights don't want to stress out the hair and possibly cause more loss than thinning that I'm hoping for. Ive got very thick hair so I'm hoping that the thinning wont be too bad or noticeable. Wishing everyone a good weekend.
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Thank you everyone for the good advice. I knew about the claritan and was taking it. The RN thinks the headache may be from the zofran drip. The headache didn't start until the next day after chemo.....I think. Now I cant remember exactly when it started! I went to work for two hours on Monday and just didn't think I was gonna be able to continue doing this: chemo & work. But by Tuesday afternoon I felt better and work the majority of the day. Worked the rest of the week. My mother is cooking for us and the ladies at work are providing one meal a week which is really helping.
They didn't use my port last Friday because they thought maybe my incision was inflammed. They erred on cautious side and used my hand and put me on antibiotics. Yesterday I was looking forward to being done with antibiotics but they prescribed another 7days. I think my chest is sensitive to the dermabond they used. I didn't have a problem with it with breasted surgery but the port area doesn't seem to be handling it well.
So,ive been thinking that the antibiotics were tearing up my stomach and causing diarrhea. But now I think its the CMF. I have to make sure ive got a bathroom nearby! Have terrible gas pains, cramps and diarrhea. And sometimes its unpredictable. I have a 45 min commute and had to make an emergency stop before i even got out of town on my way home the other day!! Once it passed I sat in car a few minutes to make sure I wasn't gonna have to go back into burger king's nasty bathroom again. I was seriously contemplating driving across the street to use McD's bathroom -hoping it was cleaner and from being embarrassed from going back inside BK again. Lol! Afterwards I kinda laughed to myself about the sick humor. I do carry one of those large plastic vomit containers from the hospital-the kind they usually give u to use for a sponge bath, in my car. I told my best friend that I guess if I got in dire straits on the commute (that is out in the middle of nowhere once you leave town), I could use the bucket for the opposite "End" in my minivan! That would be a sight to see, for sure!!</
Had a sad visit to my hairdresser today. Could only get the hair trimmed. No Color for my roots or highlights don't want to stress out the hair and possibly cause more loss than thinning that I'm hoping for. Ive got very thick hair so I'm hoping that the thinning wont be too bad or noticeable. Wishing everyone a good weekend.
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The site is messing up or something. I only submitted my other post once.
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The site is messing up or something. I only submitted my other post once.
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Lokimax2- the chemo and anti-nausea drugs usually cause constipation. I was put on an antibiotic I think round 3 for a sinus and ear infection and I too had diarrhea 8-9 times a day. I was so weak by the 7th day the MO took me off it. Now I am back to my constipation. Just can't win. I am finding each round has different side effects. I really don't have issues now other than being really tired and this round my skin hurt. I know it sounds weird, but the skin on my neck, scalp, back, and arms hurt just to touch. My head hurt when I hit the pillow. I have 37 days to go and yes I am counting. I hope you start to feel better soon. Hugs..... My daughter lives in Jacksonville NC and is a nurse. She is coming to visit next month. I can't wait to see her and my granddaughters. One is only 2 months old.
Did anyone gain weight on CMF? I have eaten way less and have gained 5 pounds. Not happy with that.
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Dianarose: I hear ya about the constipation. On the handouts from chemo class the 5-FU says that diarrhea is one of the SE to call doc about. But I'm staying hydrated at this point. Right now my guts just churn & gurgle constantly. I lost 6 pounds in first week, but have now gained some back. Not eating much so it must be fluid retention from steroids in iv or maybe its from the gas in my intestines!. I'm dead center in NC so nothing is more than 3hrs away. So glad you'll get to see the grand babies. I look forward to being a grandma in the future-not hoping for it now as my daughter is only 18. But looking forward to the day where you can spoil them & send them home to their parents!!
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Dianarose: I hear ya about the constipation. On the handouts from chemo class the 5-FU says that diarrhea is one of the SE to call doc about. But I'm staying hydrated at this point. Right now my guts just churn & gurgle constantly. I lost 6 pounds in first week, but have now gained some back. Not eating much so it must be fluid retention from steroids in iv or maybe its from the gas in my intestines!. I'm dead center in NC so nothing is more than 3hrs away. So glad you'll get to see the grand babies. I look forward to being a grandma in the future-not hoping for it now as my daughter is only 18. But looking forward to the day where you can spoil them & send them home to their parents!!
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Loki..I was like you..I thought I should have purchased some shares in Immodium AD...I went through alot of it
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