CMF Question
Comments
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Mandy, thank you for your input. I thought the trip would work perfectly in between my treatments, but now that Neulasta has been added in, I am nervous about the side effects. I am hoping to tolerate it as well as my first two CMF treatments though and will speak to my MO today when I get the shot about my trip. Did you do the 8 treatments 3 wks apart and then radiation and Tamoxifin?
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All CMF ladies: Has anyone ever developed a skin rash during treatments? A week after my 4th treatment I did sit in the sun for a few hours. Had on long pants and a long sleeved shirt and jacket. That evening I developed an ugly red rash around my waist. During next few days it was around bra line and now hives in various spots. Itchy as he__. Dermotologist is treating it like eczema or hives. I think it's from the M & F in CMF. Help anyone???
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I have been taking benadryl to prevent the serious cytotin sinus headaches..seems to work. I am at my second CMF treatment week and agree the sun is a killer. Be exprmeely careful to avoid it! No hair loss yet...
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Decisions. Decisions. Decisions. I am being treated for Invasive ductal for 2nd time. 1st was 8 years ago. At that time did lumpectomy, chemo, radiation and f/u's every 6 months with mammo & MRI and oncologist and surgical oncologist. Also, had ovaries out and did tamoxifen for 3 years. Once postmenpausal tried anti estrogen meds aromisin and armidex lots of body aches and discontinued. Now 8 years dealing with a recurrence, had mescectomy with reconstruction (though they are not sure, it could be new) and onco score of 25. Stage 2 no nodes, clear CT scan of chest, abd & pelvis and clear bonescan. Now recommendation for chemo and to try femora. I am leaning towards CMF for lesser side effects. Granted I thought having been agressive the first time that I would not of had to revisit this.
To make matters worse I lost my husband in december after a 5 month battle of bile duct cancer. To go through chemo treatments ago is just to fresh, but I know I need to for my three kids. I do hope I am making the right decision.
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I finished CMF last July with my second bout with bc after 10 years, but it was an entirely different kind from the first (her2n the first time; er,pr+ the second time). I am now bilateral and am taking aromasin because I couldn't tolerate tamoxifen). I took arimidex for 5 years before the second bc and was still on it when they diagnosed the second. Am 73 years old and right now am feeling great! Hope this is it for me and no more bc! Onc put me on CMF because it does not harm the heart. Was on AC the first time. Hope this helps with your decision.
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Hi, I had an onco score of 22 and am doing CMF, at age 44. I would think you would be offered it also based on your onco score. My main complaint is a wicked headache. It depend on how aggressive your tumor is,, Mine was intermediate. Good luck,,
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@BonnieBee & joannweb: Since you are both starting CMF, I was wondering what part of the US you are from. I was told CMF is used more in the Northeast. Just curious???
I am also on CMF and doing well. Going for 5th treatment this week.
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yes I am from the Northeast, being treated at MGH in Boston. I have not started the chemo yet...... Can you explain the treatment? Is it day 1 then day 8 infusions then 2 wks off, as well as 2weeks oral? I am looking to go back to work next week and am hoping this chemo is doable. Also, did you keep your hair???
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CMF is very doable. One Tx every 3 weeks for 6 months by infusion. I did not need a port. The SE's were not severe -- had some GI issues, but can't recall any bone pain, except with the neulasta shots to build up my WC and just needed two of those. I did lose quite a bit of hair and wore a wig for awhile, but it seemed to come back quickly. I live in southern VA. Good luck!
I have a friend in Vermont who is currently being treated in Boston. She needs to drive to Boston every week for her tx. Bummer! Her name is Maywood Giordano.
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Hi gals!
I've been missing in action. For the first time in years, I have been doing lots of physical labor as we are renovating a "trashed house" to flip. I've been retired too long and I'm not used to working all those hours, running the household, and trying to find a little "me" time. I just haven't taken the time to log onto here, but we're getting toward the end of it and it's hard to keep me away for too long!
Welcome to the newcomers. I'm sorry that you are having to make this journey, but CMF is quite doable and the gals on this thread have been giving you some good advice.
smva.. They are still doing alot of CMF in the central Illinois area!
I'll try to check in more often! Hugs to all of you in treatment. Visit us often here. There is always somebody around to give you support and answer your questions.
Rita
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I have to get something off my chest about the word "doable."
I suppose we could say all chemo protocols are "doable" since people do them all the time. CMF is just known for not having such severe side effects. On the downside, the course of treatment tends to be longer, maybe six months vs. a couple of months with the other BC treatments. Also not advised for more agressive cancers.
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Mary, I think we choose our words based upon our own experiences. I had another friend who was getting AC chemo at the same time that I was doing the CMF. Although she did get through it, my treatment was by far much more "doable." She had many more side effects than me, lost her hair, and contracted thrush. I did have two more treatments than she did, but I was still grateful for my chemo formula over hers. I think that we are are referring to the lighter side effects that MOST of us have compared to other forms of chemo when we use the word "doable." Also, it's a positive word for those who are starting the journey and are lucky enough to have CMF over the harsher forms. CMF is not for everybody, but it's obviously an option for most of the gals who have found this thread and I hope that I will be able to offer good advice about their treatments and give them as much positive support as possible. This is such a traumatic journey for all of us.
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I saw the radiation doc today and she thinks I need rads and chemo. My onc. was wishy-washy on the chemo because my oncotype score was weirdly low. I say weirdly because I had sizable cancer in three out of 39 nodes. The oncotype score is not usually used for people like me, so it's confusing. Anyway, the onc. said I could have light chemo once a month for six months and could stop if I didn't like it! She had previously mentioned CMF, which is why I am on this thread, looking for info. She said I wouldn't lose my hair but would be tired and nauseous. Nauseous for how long? And I read I have to stay out of the sun? I am a gardener and I live in Seattle. When the sun comes out we all need to run outside! I need to make treatment decisions soon because BMX was 4 weeks ago. I have a call in to onc. w ith questions since I don't see her until May 9th. I also have TEs that need to be filled. Getting rads w/o chemo means I'd have to fill them a lot faster and more painfully than usual. I already hate them and now might have to have them until next year. I needed to vent and am thankful I can do so here, where you have been through or are going through similar things.
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Hi Jeannie: how low was your Oncotype score? As you say the Oncotype score is not usually used for those of us who are node-positive but it may give an indication of how agressive the cancer is. There are not enough studies to allow the score to be used as a predictor of recurrence when there are nodes involved.
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My onc's nurse just told me Cytoxin pill every day for six months and then once a week infusion of M and F. Onc. had said treatment once a month? Trying to get in to see her next week to clear things up.
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Jeannie57:some of the other gals on this thread from the Pacific Northwest seem to have had that protocol---with the cytoxin pill and the infusions of MF. Maybe one of them will write in to give you advice. Good luck with your decisions!!! And stop by here as often as you want....we are always here to give support.
Hugs...
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Hi, Mary,
My Oncotype score was 13, distant recurrence chance 8%. The original biopsy came up with grade 1, but the lumpectomy showed grade 2. Combine that with fairly big cancer in three nodes and the Oncotype score is confusing. I will definitely do rads but still unsure about CMF, especially if it's EVERY DAY for six months. Onc. thought chemo would only be 10% benefit; I need to discuss this more with her, hopefully next week. I am moving up the body scans to next Tuesday, hopefully, so that will give me one more piece of info.0 -
Jeannie: Yes that certainly is confusing. I was already headed toward having chemo when I found that my Oncotype score was 18, but at least my score gave me some assurance that my cancer wasn't as agressive as the positive nodes might indicate.
Not sure about the CMF regimen they are suggesting for you. I had dose-dense CMF -- infusions every two weeks. I had a total of four over a two-month period. I did have four doses of dose-dense AC prior to that. The onc said she wanted to top that up with the CMF as added insurance.
There seem to a number of different CMF regimens - see this page on CMF chemotherapy on the Macmillan site. It sounds like your onc is planning to use the regimen described under Schedule A on that page.
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Thanks, Mary. I will have to be convinced.
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Jeannie: if you have any doubts, do go for a second opinion. I had four oncology consultations. I was very unhappy with the first two as they didn't take my prior medical history into account in their recommendations and did not want to order the Oncotype test since I was node-positive. Onc #3 was very thorough and did order the Oncotype test as well the "tamoxifen resistance" or "CYP2D6" test. But when my Oncotype score came back at 18, she said she would leave the chemo decision to me. I felt I didn't have enough information to make the right decision so sought out Onc #4 and that's where I was finally treated.
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Jeannie, Mary has given you good advice. If you are not comfortable with the suggested chemo procedure, get a second opinion. There are indeed different ways and procedures for administering CMF. Also ask your onc why he or she is suggesting the Cytoxin pill instead of the infusions every two or three weeks. Our situations are all different and perhaps they have a reason to prefer this type of treatment. I took 6 CMF infusion treatments spaced 3 weeks apart. I controlled my nausea with lemon drops and Compazine and led a pretty normal life for me during this time. Yes, I tired more easily but I continued to bowl and golf toward the end of my journey. I just rested a bit more in-between my activities.
The decision-making is so hard. I am sure that you will make the best decision for you. In the meantime, feel free to come here whenever you need to vent!
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Hello everyone,
I had my last CMF infusion exactly one month ago (6 total). My hair still seems to be falling out as much as it did during chemo; is that common? I figured by now it would be starting to grow back, not still coming out.
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Hi Etherize!
I did have chemo symptoms for about 2 to 3 months after I stopped chemo. After all the drugs are still affecting your system. I finished chemo in May, went to Europe in late July, and really felt fine in about September. My main chemo symptom was terrible fatigue which made it difficult to even walk around the block and it did go away. By the time I got to Paris in July, I was walking all over and doing well. Why not ask your onc about what you are going through.
Take care and let us know how things are going!
Hugs to all
Mandy
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Hi ladies!! Been reading and trying to catch up with everyone. Welcome to all the new ladies on the thread and I can't add anything new to what's been said. I do hope that everyone in treatment is doing well and those that have finished.....congratulations!!
I have one more week before I have to start getting ready for all my appts and I'm already stressing out. Don't know why I do that to myself but the antisipation of my mammo's, surgeon appt, bloodwork and onc appt just makes me want to cry. I keep telling myself that it will get easier and unfortunately, I still dread it. Praying that someday I won't dread the appts but I think that day might be a long time coming. I am so thankful that I seem to be doing great just praying that these next few weeks confirm that I am.
Blessings to all......
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Oh Cabmom............your anxiety is so normal! Like you, I think that time will make it easier, but I still stress out, too. My tests are in June and I'm already worried because I've had hip pain since I got back from Florida and it weighs heavily on my mind. The chiropractor tells me it's all muscle related, but you know where our minds go............ I will keep you in my thoughts and prayers as these appointments arrive. Then I'll help you celebrate when they are all over! :-)
Etherize....The chemo stays in our bodies for quite some time after the treatments are over and it does take us awhile to recoup and get back to ourselves. Each of us is different so we all bounce back at different rates. As for the hair, I did have shedding for quite some time afterwards and eventually it stopped. I can't remember an exact time frame for it, though. Congratulations for finishing the chemo journey! Also, I love your avitar. I have a black cat that looks alot like yours.
It's rainy and dreary in Illinois today and I have lots of indoor projects so I need to get off here and get busy. I hope everyone is having a great day. Hugs to those of you still in treatment and hugs to my good friends who are finished and come back faithfully to help others.
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Hi..I am at Sloan Kettering. The CMF is not as terrible as I expected. My main complaint is a wicked headache. They took alloxty SP) out of my drip and that seemed to help. I had a bit of nausea however the it was worth the trade of. Each week I am tired on a different day. Seems to be as I move through I am more tired. My period is lighter and less frequent.
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BonnieBee..so glad you're handling the CMF. I have been told that sometimes you can relieve the headache by asking them to slow down the drip a little. You might inquire about that next time and see if that would be an option for you. I think it's only normal to be more and more fatigued as you move through the treatments. There is still some CMF in you when you have your second treatment and it's cummulative so it continues to build up in us slightly each time. Rest when you need to rest and listen to your body. You can do it!
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BonnieBee: I agree with RitaJean about slowing down the Cytoxan drip. I had what I can only describe as a wicked headach too after the first time along with a feeling that my sinuses were clogged and an ugly sensation in my nose. Slowing down the drip helped enormously with that.
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BonnieBee: I agree about slowing down the drip. I asked for it and it helped. But you don't have to be nauseous with all of the meds out there. If Aloxy is a problem, perhaps kytril or emends will help. I had to "play" with the anti nausea meds until they found a combo that worked for me (at my 3rd tx).
Sending hugs to everyone in treatment and finished with treatment.
Mandy
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cabmom...How are you doing with the stress of the appointments. Keep in touch. You've been in my thoughts.
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