CMF Question
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Uff Da ..... I've read the post this eve, but have gotten so far behind. Just spent the better part of the evening chatting with my neighbor's cousin whom was just diagnosed. She lives in the southern part of the state but is having a second op at SCCA (for you local gals). I mentioned to her that waiting for pathology and understanding it is the toughest part and she has some encouraging news.
Mandy ... always great to hear good news from any and all of our scans ...WhooooHooooo!!!!
For those starting, in the middle of, or finishing up your CMF txts .... keep on keeping on !!!!!
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Codavis - I did not lose my hair - it thinned, but was not noticable to the general public. My onc. had me take prilosec in the morning as well - are you at SCCA? CMF is very popular in Seattle.
I also found it unsettling to not read much about CMF on bc.org until I found this thread - great women who are a great resource.
Merilee - small and perky sounds good to me!
Carol - it was great to talk to you this afternoon!
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aprilgirl1 - I'm at Swedish. I've been very happy with my onc and the treatment center so far. It's all been such a whirlwind and still seems very surreal. Just trying to figure it all out and get through one day at a time.
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Codavis....You've got the best plan............one day at a time........... and before you know it, everything will be behind you.
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Just checking in to say hello and wish everyone well that is still going through treatment. Merilee, you should be close to done....hope it's going well. I'm still doing well just plugging along in radiation
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Hi everyone - its been ages since I've popped in, but I have been reading/catching up!
Codavis - I was at Swedish for chemo last spring (Kaplan is my onco). I had (and continue to have) a wonderful experience there - everyone is so great. Did CMF as well (2 weeks on, 2 weeks off with cytoxan pills daily for 3 weeks, 1 week off)...there so many difference ways to dose you up, right? You've got the right thinking...one day/one step at a time.
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#5 is done. # 6 happens in 20 days, I will be done
It does go by fast for those of you just starting.
I am also on vacation for a week now. I feel great today.
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YEA Merilee. So glad you're just whizzing through these treatments! You go, gal!
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Surprisingly I did not use any nausea meds Fri or today.
Still feeling pretty good.
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Hi All,
It's been a long time. I forgot all my logons and passwords! Merilee - I'm glad to hear you are doing so well. I have one more round (#8) on Monday. I'm looking forward to a break and then radiation in May. For any newbies - I also worried about losing my hair. I did lose handfuls at times as the treatment progressed but most people tell me they don't notice the thinning. I've been washing my hair less than I usually would although it can be hard with the hotflashes and sweating at night. The nauseausness also got worse for me as the treatments progressed. I opted for less steroids because it made me extremetly cranky, sleep deprived and constipated so the trade off is more nauseausness. I've been able to work, but I work from home 2 days after treatment and some days I go in late. I know everyone's experience may be different. It's not as bad as I worried it would be but I am glad it will soon be over. I'm just thankful to have found this group. It defiinitely helps to read about other's experiences and to know what to expect. Thanks everyone for the sharing and support. I hope everyone gets through with minimum side effects. Happy Easter!
I
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Happy Easter to all my CMF friends.....I hope everyone is doing well and enjoying a blessed day with your families!!!
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I hope everyone had a great Easter. We had so much fun in KY with my son and his family. Then we came home through Cincinatti and tried out a couple of the casinos in that area. I didn't win by Dave was pretty hot on the slots so we stayed a little longer than I had anticipated.
Curlygirl........so good to see a post from you and hear that you are doing well! Now you're doing the NO MO' CHEMO dance! Enjoy your break before the rads.
I'm off to get the rest of the things unpacked and laundry in the washer.
Have a great day!
Rita
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I have a question for the thread:
I see that a lot of you took compazine for your anti-nausea med, but I was told I couldn't drive if I took it and I should use it as a back-up to Zofran, which I take daily before my Cytoxan pills. Did those of you that took compazine have any issues with drowsiness?
I'm in my second week (of 26) and am taking daily Cytoxan pills with infusions every Friday of Methotrexate and 5FU. I started filling icky on the 4th day and it hasn't let up. It's not nausea so much as feeling crampy and bloated. I also started having problems with constipation at the same time and have started taking Senna-S every night. It helps, but I still don't feel well. I'm back to work tomorrow and am worried about how I'm going to manage. I will ask my onc about it on Friday, but thought I'd ask the real experts first!
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I do not have any drowsiness with compazine.
Now that I am near the end of my treatments I have finally mastered avoiding the wicked constipation that makes you feel iky. 5 prunes in the morning and 5 at night. Stool softener and milk of magnesia daily during treatment week for me ( including the day before). Only veggies and fruit to eat on the day of and lots of it.. My treatments are every 3 weeks. One to go whoo hoo!
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Codavis, I took the compazine. I learned to take it regularly as soon as I left the chemo room and not let the nausea get ahead of me. I took it through my fourth day, which was always my worst day, too. I drove while taking it and had no more fatigue than I normally had. In fact, nobody mentioned NOT DRIVING while taking it. If I didn't start taking at once after the infusions, I had some nausea, crampy and bloated feelings within a few days and it was much easier on me to "ward those feelings off" instead of attacking them once they started.
The constipatiion is a major side effect of CMF. It sounds like you are doing the right thing for it. I used Senakot-D which is very similar to what you are using. It helped to control the issue.
Talk to you onc about your symptoms. There are lots of differnt anti-nausea meds out there and there's no reason to suffer with symptoms that you can't control. You will find the one that is rigfht for you!
Rita
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Thank you both. I'll ask on Friday. Unfortunately, since I take the Cytoxan every day for six months and have weekly infusions, I don't think I can do Merilee's diet! But, I will try to get more fruits and veggies in on a regular basis. Good advice.
Funny about the driving while on compazine--I was definitely told not to. In fact, I took if for the first four days because my Zofran hadn't arrived and I felt OK. Maybe a little drowsy, but who knows how much of that was in my head.
I return to work tomorrow and plan to take a compazine when I get there because I won't be driving. We'll see how I feel and if it helps control the icky feeling.
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Another question:
Did any of you experience joint problems during CMF treatment? My wrist has been sore for a week, but my onc said it wasn't because of the chemo. I don't remembering injuring it and it comes and goes. Sometimes my elbow feels achy too.
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Codavis
No joint pain but I have heard it can damage cartilage. I take glucosamine to protect mine.
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I've never heard of CMF associated with joint pain. In fact, I was told by an oncology nurse that CMF helps people suffering with arthritis and that some of them hate getting finished with the treatments. The "after drugs"..........Tamoxifin, Femara, Arimidex...............do often cause joint pain.
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I just found out yesterday that I have to start CMF next week.
First, a quick history; diagnosed stage II in 2003; bilateral mastectomy, followed by chemo, then radiation to the chest wall. Diagnoses with stage IV, mets to the bone, in 2007. Radiation to the left hip and pelvis at that time. More radiation to left hip in Nov/Dec 2009, and radiation to from the T-10 spine on down in Jan/Feb 2010.
The last bone scan I had in March showed progression of the bone mets, 2 new spots, and tumor marker has been increasing over the past few months. Next week, I am starting the CMF. My oncologist said that I might not lose my hair, but he can't guarentee it, especially because of having had chemo in the past.
I have been on monthly Zometa infusions since 2007, and will continue those. I have also been on Aromasin for almost a year; not sure if I am supposed to take that while on chemo, but I will ask when I go in for my first treatment on Tuesday.
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Hi Codavis!
Yes, joint pain is a side effect of CMF. If you google CMF with "joint pain" it will take you to any number of cancer cites that will list it as a side effect. For example, http://www.cancercare.on.ca/pdfregimeninfo/CMFiv.pdf states that "joint pain may happen about a month after treatment. This may continue for up to a year." I am one of those CMFers who had severe pains in my knees. It was difficult to go from sitting to standing because of the pain and stiffness---this was not a result of an aromitase inhibitor because the only thing I was on when it happened was CMF. The good news is that it has almost disappeared.
About constipation---I did what my grandmother would have done--I ate stewed prunes every evening when I was on CMF. I found that this helped me enormously with the BM problems. And after infusions, I took a stool softener at night for the first day in addition to the prunes.
All the best to the new gals on this thread!
Hugs
Mandy
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mom2acat....Welcome to the CMF thread. I am so sorry that you are back fighting this demon again. Hugs to you! We will be here to help you through this new part of the journey. Most of the women on this thread have experienced hair loss......but not total hair loss. Even those who were repeats to the chemo regiment have not lost all their hair so hopefully you will escape with you hair intact this time.
Rita
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Hello Ladies. Just got #5 behind me this monday. My doc prescribed me Decadron for home to see if it would help me with the delayed nausea I experienced after #4, but after getting NO sleep on Monday night, I decided I don't want to put any more steroid into my body than I have to. I need it during the treatments for the weird breathing thing, but UGH...I'd rather be nauseous than get no sleep. So, I'm sticking wtih Compazine on a regular schedule and it's working just peachy. BUT...LORD, the muscle fatigue today is REEE-diculous. I feel like I'm carrying around sandbags for some reason. I don't necessarily FEEL all that tired, but my body will NOT move for me!! So frustrating!!! Just making myself move...doing laundry, etc...or I'll go crazy.
Hope everyone is doing well. A big hug to those of you that are new and to those of you getting the heck done with this!!! I have 3 more and then on to radiation. I don't want to wish the summer away, but BOY...I can't wait until August when my treatments should be complete! I want my life back...my normal schedule...no more constant doc appointments!
Oh, regarding the Compazine and driving...my prescription does advise against operating heavy machinery, but I wouldn't say I feel terribly tired after taking it, ALTHOUGH...I am taking it more regularly than I have this entire time and maybe it's playing into this fatigue I have goin' on. Who knows.
Time for homework with my big kid and pizza for dinner. For some reason, pizza is something I crave and that actually tastes good. WHOO HOO to that!
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I had to take Decadron with my Taxotere back in 2003; I had to take it the evening before, the morning of and the evening of my treatment each week. That first night I took one, I was wide awake all night; I didn't go to bed at 5am then I had about 3 hours to try to sleep until it was time to go for the first Taxotere. I didn't even have to ask for a sleeping aid, the nurse saw my dark circles under my eyes and asked me if I wanted some sleeping pills. I was able to sleep after that if I took an Ambien along with my evening doses.
I've taken Compazine for nausea also; it didn't really help the first time I had chemo, but I used it when I had my radiation treatments to my spine at the beginning of this year. I had nausea from the radiation that passed through my stomach. I got sick that first day of radiation, but after that, I took a Compazine 45 minutes before my radiation time, and I didn't get sick any more after that. But it does make me sleepy, so I had to have someone drive me to the radiation center. But I seem to be extra sensitive to a lot of meds anyway; a lot of things make me lightheaded or sleepy that don't seem to have that effect on most other people.
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Mandy: I wasn't aware that joint pain was a side effect of CMF treatment. I'm wondering if that may be the cause of the pain I'm now having, although I'm post-treatment. I had my final CMF treatment on Feb 1 and started radiation on Feb 24. I started to have pain in my upper arms/shoulders on Feb 25. In the beginning I attributed it to having to hold my arms over my head during radiation treatement, but it didn't go away as the pain from muscle strain would. It continued to get worse until it affected both hands too. It's always worst in the morning and often wakes me at night. It's now six weeks and there is no sign of improvment.
The radiation oncologist said she didn't think that radiation is the likely cause as that just targets the breast. And although I did have the full breast treatments in the prone position and had turn my head to one side and hold my hands over my head, that was only for a few minutes every day.
The medical oncologist said she hadn't given me anything likely to cause this as a side effect. She had put a lot of thought into not giving me the taxanes which might have affected my hands. She suggested that the problem may be in my neck and ordered an MRI. I'm going for that tomorrow.
The thing about this pain is that I find it hard to know if it's joint pain or muscle pain. Also the PDF you linked to says "May happen about a month after treatment starts. This can last up to a year." I had two months of CMF treatment and the onset of this pain was three months after beginning of CMF treatment.
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Hi all....hope everyone is well. Just wondering if anyone had any abdominal swelling from their CMF treatment or if anyone ever had pain in their ribs after-wards? I'm actually dealing with both....just curious if this a CMF se!
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No abdominal pain for me. I did have bone pain, including in the sternum, but that was from the Neulasta shots.
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Cabmom: I did not have abdominal swelling but I did put on "belly fat" which is common with CMF and some of the other chemos.Is that what you mean by swelling or is your abdomen distended? I definitely had bone pain (admitted by my onc) from the CMF---my shins would hurt so much that I'd wake up in the middle of the night in pain--still have it a bit. In any event, I hope that you soon feel better.
Mary, I did not mean the link to be the definitive link on joint pain and CMF. I just quickly googled the two and found that link. I doubt that it means that the pain could only come at the end of one month on CMF since it suggests that it could last a year. Each of us reacts differently to the chemos and other treatments that we have so for one person there might be no joint pain side effect and for another there is. My bone and joint pains came after my 6th of 8 tx-----perhaps 4 months in--and my onc told me my joint and bone pain was from the CMF. It is one of the few side effects that she admitted. For most of the other side effects, she'd deny them and then I'd look them up and bring her an article on them. But maybe your MRI will show some injury that caused the pain and which a little physical therapy will help. In any event, I hope you will soon be pain free.
To the new gals, do not panic as your read our side effects. This chemo is really very doable and you will be finished before your realize.
Have a nice day!
Mandy
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Mandy, I don't really know the answer to that, whether it's swollen or a distended abdomen? To be honest, I don't know that I can tell the difference. I have gained over 40 lbs since last May and most of it is in the stomach area and I feel horrible and can't wear anything anymore. With that being said, I'm praying that it is only weight gain and that there is NOTHING else going on. However, I am having pain right under my affected breast near my ribs. Xray and Ultrasound showed nothing but they are wanting to do a bone scan, which is now scheduled for the 26th....have to admit a little scared but hoping and praying for the best outcome possible. I also have some leg pains not sure what that's from but seems to be improving each week......
To the new gals, I agree with Mandy and all the other ladies on this thread.....this chemo is doable and I did very well on it regardless of some of the latest se's......
Merilee and Judy, hope you both are doing great and are almost done.....still sending good thoughts to both of you.....
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cabmom: I don't know about abdominal swelling, but I'm definitely bloated and feel full most of the time. I attribute a lot of that to the amount of water I'm drinking. Sending you positive thoughts that your scans are clean.
Regarding the joint pain, my wrist has felt better in the last day. I go for treatment 3 tomorrow--it will be interesting to see if the pain returns.
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