CMF Question
Comments
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Beanius....yep, my guess is that you DID overdo, but isn't it hard not to jump right back into things? My radiated boob stayed swollen for quite some time after I was finished. I was really beginning to be concerned because I had no problems at all....no burning or anything else....during the actual rad treatments. Then it slowly began to lose the swelling. Then I panicked again because I felt a hard ridge of tissue near my incision site, so I high-tailed it back in only to discover that it was a type of scar tissue caused by the rads. The rads really hit our bodies hard and it takes time to heal. Stress also causes turmoil so just try to cut back a bit and see how you do. Hugs across the miles to you!
Has anyone heard from golfergrandma this past week? If she doesn't pop on here with an update, we're going to have to send out the search light for her!
DesignerMom....when you catch that pesty groundhog, smack him a few times for me, too!! LOL
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Hi CMF Ladies- Like many, I decided to go with CMF in order to subject my body to less as i am super sensitive to all. I had a bad time with my 1st infusion on March 18th. Extreme pain in hips/lower back within hours and a lot of nausea. Had to do 5 shots of Neupogen starting next day due to low counts, and that made the pain/nausea worse. Started to feel better after 5 days, but dreading my #2 this coming Friday. Has anyone else had major lower back/hip pain with CMF? The doctors all tell me it's "not usual" SE. If I hadn't just had a clear PETscan, I would be worried. My other question is, did any of you who just had "thinning" of your hair have the scalp "crawling" feeling or am I going to be the only one who loses my hair with CMF....
Would appreciate any words of wisdom as I prepare myself for Friday's infusion. Part of me wants to just RUN in the other direction. Hugs to all! 0 -
Hi Fortis! I had scalp itching and tingling during CMF. While I had hair thinning, i did not lose most of my hair and I never needed a wig or a cover-up for it.
I did not remember specific side effects in details, so I went back to my "chemo diary" where I kept all of my reactions. And, yes, I did have backache, pains in the lower ribs and flu-like pains after my first infusion. I also had leg pains in my shin bones. So you are not alone. I took motrin for mine but unfortunately did not comment on whether it helped. I suspect that means that it did help or I would have been complaining. :-)
Feel free to come here whenever you have a question. One of us will likely have had some experience with it.
Hope your next tx is better and that you feel better.
Beanius and Golfer Grandma--hope you both are feeling better.
Hugs to everyone on this thread.
Mandy
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Fortis....welcome to our little corner of the world. I am so sorry that you had such a hard time with your first CMF treatment. Darn it all! That's not the way we want to start! I did not have the back pain and flu-like symptoms that you described. Is it possible that your counts were down before you actually started the chemo? That's a lot of Neupogen shots that they gave you, especially after just your first treatment. At any rate, they should have your counts built back up well for you before your next treatment and that might help reduce your problems with this next treatment. Are you taking your treatments all by IV or are you doing some pills, too?
Come back often and keep us updated. We will help you get through this and we do understand. Hang in there.
Rita
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Designermom - so glad you get to come to the west side for the summer and I hope it's a good one! I believe you will be quite a bit north of me?
Ritajean - thanks for sharing your experience, it helps a lot. I would say this is definitely getting better. It is frustrating not to be able to do all that I want to, but I will get back to it in time.
Golfergrandma - hope you are doing okay and that you'll check in soon so we can keep an eye on you.
Mandy - thanks so much for the well wishes.
Fortis - I wasn't as organized as Mandy and didn't keep a diary. I had some stomache discomfort while I was on the chemo. I'm going on 4 months post chemo and do have some lower back a lower rib aches that I've wondered about. I had the IV and pill chemo. I'm so sorry you had a bad time of it and I will be wishing you all the best this Friday. Hang in there, it does come to an end!
Take care all!!!
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Mandi 1313 - thanks so much for letting me know that you had scalp tingling....I guess there is hope for holding onto some of my hair.
It is also good to know that the aches and pains are not completely unknown out there. Sometimes I wonder if the doctors ever read the patient feedback as they say things like "that is not a CMF side effect".... hahaRitajean- thanks for your welcome. I did have low counts, but I've had them all my life and very rarely get sick. After the shots, my counts were sky high, of course. The last test, they are low again, so we shall see where I am on Friday. I am all IV at this point, no pills. Just switched doctors (long story) but hope to stay on the IV as I'm worried about the daily pills affecting my bladder. Maybe I need to re-think that.
Beanius- appreciate the additional info and especially the thoughts for this Friday....
It is wonderful to have you all here and I will try to "read up" on everyone's postings. I so look forward to getting through these steps and being on the "rest of my life" side.....deep breath, one step at a time.
When you get to the end of your rope, tie a knot and hang on. - FDR
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Fortis- I'm sorry your first CMF was so tough on you. Like most of the other ladies, I didn't lose much hair. I am hoping you will be lucky too. The tingling could just be that....tingling. I didn't have the aches and pain. My worst SE was constipation, finally resolved by the end of my CMF!! I will say that my first infusion was the one I felt the most, kind of like I got hit by a truck. With each additional one, they seemed to get easier, not tougher. I'm hoping your next one will be easier. Toward the end my counts were quite low, but they bounced back quickly. Come back and let us know how you are doing. These ladies are the best!!
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Hi Fortis! Hang in there. I agree that the oncs do not seem to keep track of patient side effects. I checked my chemo diary and I had the bone aches each time I had a tx (I did the IV x 8). And it definitely came right after each tx. My tingling and itching on my scalp was so bad that my onc was not sure whether I might lose my hair. But I used the special shampoo that Ritajean suggested (don't remember the name right now) and was very gentle with my hair---only washed every 3rd day rather than every day; did not pull on the hair with a comb, etc.--and I kept most of my hair. I did cut it short in a style which hid any thinning quite well.
Golfergrandma: how's it going?
Beanius: hope you are feeling better. I was pretty exhausted when I finished chemo and it took a couple of months before I had my energy back. So try to take it easy and you will be ok.
Hugs to all,
Mandy
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Fortis, welcome!! This is such a great thread with so many wonderful ladies helping with the journey....I remember all too well how blessed I was to have them during my journey. I definitely was not as organized as Mandy....I was a mess
! I don't remember the tingling but I didn't lose all my hair either. I did thin quite a bit but it was really only noticeable to me and my hairdresser. Wishing you all the best. Good luck on your counts and your next treatment. We'll all be waiting to hear.....golfergrandma, hope you're doing okay! Prayers coming your way......
Rita, been playing lots of golf and loving every minute of it
. Hope you've been able to get out to. It's been so pretty here. Finally was able to join the ladies group again and it feels great to get out there again on a regular basis. Playing again tomorrow and can't wait !Mandy.....I miss you and hope you are doing great!
Beanius, hope you are feeling better....positive thoughts coming your way!
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Hey cabmom..........so glad that you've been out playing golf and are able to join the ladies league this year. WAHOO!!! I am golfing in two different ladies leagues this year and can't wait. In fact, I think I'll go over to the driving range this afternoon and just hit some balls. I played pretty good while I was in Florida but when we went to Biloxi, my game really fell apart. I haven't been out yet but it's getting to be that time around here. So glad you're doing well and getting out and having fun. Hope you have a great game today!
Fortis, I used the Nioxin hair products during chemo and kept most of my hair. I didn't care for the scent of them and they were a little cashy compared to regular shampoos and conditioners but they seemed to do the trick for me. You might want to check them out online. Good luck tomorrow. I did the six IV infusions and no pills, too. I bet tomorrow will be easier for you.
I'm still concerned about golfergrandma. She's missing in action. Hopefully she is just busy enjoying the spring and will check back in soon.
Hi to all of you! It looks like it's going to be a great day here today. I hope you're all enjoying similar weather and will be able to get outside for a little bit today. Remember, we need that sunshine for our vitamin D supply!!!
Hugs to everyone.
Rita
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Fortis: I used the Nioxin products that Ritajean suggests--a shampoo and some kind of conditioner too. I did not particularly like them, but if they helped me keep my hair, they were worth it!
Golfergrandma hope you are doing ok.
Hugs to all
Mandy
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Rita- Still gloomy and cold here in NYC. Please send the sunshine my way!
golfer- Hope you are doing well. Hope you are busy hitting those little round balls a loooooon way.
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Hi Everyone! Nice gray day today in Virginia, suited my mood going over for 2nd go at chemo. Changed doctors and he moved me to the oral CMF regimen, so Cytoxan pills start tonight. That's the part I'm scared of... Did okay with the M and 5-FU infusion today, but it's early yet... I guess the weekend will tell the tale
.... Could one of you who did the oral CMF tell me if the dosage of 3x50mg cytoxin pills per day (150 mg 14 days), 64mg methotrexate and 900 mg 5-FU (days 1 &8) is "typical"? Seems a bit high to me... of course, I'm not the doctor, but I know the old "classic" CMF was a lot less than this. Hard to find any on line dosing info other than for the cytoxin, so just curious.
Anyhow, enough about ME... I hope you are all doing well today and I'm sending sunshine thoughts to everyone who is under gray skies. "Life is like a rainbow: You need both the sun and the rain to make its colors appear." I'm watching the birds feed in the rain and their chirping is soothing to my soul.... Take care everyone!
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fortis- Glad you have another one under your belt. I can't help you with the pill dosage as I took the IV version. I'm sure one of these ladies will chime in. Be sure to drink tons of fluids to flush all those chemicals. Rest well.
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fortis....sorry I took all IV as well. Hope everything goes well with the pills....I'm not 100% sure but I think the dosage is based on weight as well but maybe another of the ladies knows for sure. For some reason, I think I remember that but I could be wrong!!! Good luck and do try to get lots of rest!
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Hi Fortis,
I took cytoxan pills, same as you 50 mg x 3 (150 mg) for 14 days, then 14 days off. Also had two MF infusions (day 1 & day 8) during the 14 days of cytoxan pills. It's doable, I had 6 cycles altogether and was able to keep to my regular routine, mostly. The cytoxan makes you pretty tired by the end of the 14 days, I was always so glad to get 14 days off! Anyway, it does come to an end!!! So hope you will hang in there and take one day at a time. I drank a lot of water, probably a gallon a day, and made sure to get some exercise almost every day...anything you can do to keep moving and keep flushing your system with good fluids, water, juice, tea, etc. will help you get through. Plus, coming on BCO and whining your head off, like I did! These wonderful ladies got me through it and I know if I could do it anyone can! If I can be of any help to you let me know. Big hugs to you and to all my CMF sistas, have a great weekend!
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Rita, I haven't been on here for awhile... since I drifted off to FB, I've been MIA alot.. but, I do still read lots of the posts when I get the chance. I just read Mandy's post about how you are such an inspiration, and I agree 100%! You are the greatest!!
I guess I don't post much here any more, since I don't think I can be of much help, since I didn't get CMF... you were so good to me, taking me under your wing!I love you!!
Harley
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Aw Harley.......Thanks! I love you, too, gal and I'm so proud of all you are doing to help out our cause. You are one dynamic lady! I keep up with you some on Facebook, but you can come back here anytime. We adopted you on this thread, and once you've been adopted, you ALWAYS belong here. Hugs to you! Thanks for dropping in to say HI!
Rita
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Awww.... Thanks, Rita! You are SO sweet!!
HARLEY
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I followed the same regimen as Beanius except I had 3 pills one day and 4 the next, alternating throughout the 14 days. The formula is based on weight so now I now I weight more than she does
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RCG - I've been wondering how you are doing! So good to hear from you! You are proly taller, I'm a short, little apple stocky babe. (j/k) :-) Hugs to all!
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Just stopping in to say HI and to bump up our thread. I was hoping for news from golfergrandma.
It's the start of a lovely day here today, which is good since the temps are supposed to drop again over the weekend.
I hope everyone is doing well.
Rita
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Beans - Yes, I am realliy tall - 5'2". My husband calls me stub. I will PM later and we can catch up.
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Hi Everyone-
Thanks so much for all your feedback and hope you are all doing well. Wish we had some of your sun, Ritajean, its a rainy day here in Virginia....Raincitygirl- I'm with you 5'3" and called "short stuff" by my 6' son.
I'm having so many side effects from the oral CMF, I'm ready to quit it all. Headaches, nausea (despite the meds), overall total weakness, gums sore, head sore, backache....etc...Haven't been able to go to work. At least after the infusion, I felt better by day 5. Not so with the oral round....and I'm only on second round overall, day 5. Obviously my body is overwhelmed.
My 3rd choice by all 3 oncs during consult was "don't do chemo, just hormone treatment", and 2 of them said: "the real question is, do you even need chemo"..... that intermediate-high oncotypeDX really messed with my easy decision to skip it...now I'm sitting here in tears, just trying to figure out whether to quit now... I just can't imagine lying around for 5 months like this only to maybe get 1% less chance of mets... seems like the psychological stress will do more harm.
Wish I could just run away.... help?
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Hi Fortis!
So sorry you are havhing such severe side effects. I sent you a private message so when you see the "private message" section lit up with a number, you will know it is from me.
((((hugs)))))
Mandy
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Fortis - I am so sorry to hear that the oral cytoxan is giving you such grief. I do recall having moments when I didn't think I could do it, I would get so tired and I cried so much through the whole thing, really leaned so heavily on my DH. The halfway point in the whole thing was so hard, thinking I still had half way to go. I know how hard it is and if you have doctors asking if it's even necessary in your case that would make suffering through this even more difficult. I felt like there was a choice for me at the beginning and I ended up doing the chemo because the cancer had gotten into my lymph nodes and I was hoping to nip any spread in the bud. My oncologist sort of indicated it was a little bit optional, but she also recommended chemo for me. It was really hard to pop those pills for 14 days in a row, but I kept thinking about my husband and my family and I wanted to do anything I could to buy more time with them. I ended up just following all the advice of my trusted doctors, but I did get a number of opinions and they were not all the same, so that is why I went with the ones I had a gut feeling about, that they were giving me the best advice for me.
During the infusions I would eat ice to help prevent mouth sores and this was very effective. There was a mouthwash I got from my oncologist too that I used, First BLM and I used Biotene toothpaste and mouthwash all through it. I took zofran to prevent nausea in the morning - started my day with 1/2 tab with breakfast and then started pushing fluids, then about half hour later popped the cytoxan pills. Then I could really feel the effects of it, so I would just drink as much crystal light as I could tolerate. I almost always needed a nap by the end of the day and then I would get outside for some exercise, walking, whatever to keep moving.
I feel so badly that you are having such a bad time of it. I will be wishing you all the best. I do know you will make the best decision for you after you give yourself some time to think about it all.
RCG- you are so funny, stub! I'm 5'3" or 5'4" and above my BMI, but only my doctor knows by how much - tee hee!
Hope everyone else is okay...BTW, my rad breast has calmed down and I can tell it's healing okay...thanks for your help getting through that too!!!
Big hugs to all my CMF sistas!
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Fortis,
(((HUGS)))
Harley
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Hi All- Again, can't tell you all how much it means to have you to reach out to..but I know that you know that, which is what it's all about! Not running away tonight, just took the pills one more time. But still thinking long and hard about quitting....
Beanius- thanks for all the input, bought Biotene yesterday based on all the recommendations read on this site. Seems to be helping a little... will use ice next infusion if I keep going with it...
unfortunately the Zofran doesn't really touch my nausea and the compazine makes me jittery and weird...I'm just a lightweight... my body doesn't like even simple things like tylenol.... ((((Hugs)))) back out to all of you.Wishing you a peaceful night.
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Fortis, ask for Kytril at your next infusion. It works alot better than Zofran! :-)
For some reason I could not stand the taste of ice chips, so I brought frozen lemon "italian ices." and kept spooning them into my mouth during the infusions. So you might try that too. I also kept a bag of ice on my head since I was convinced it would help me keep my hair. Don't know if it helped, but I like to be proactive and think I am doing something.
Hugs to all
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Fortis.........is there any possibility that your onc would consider going back to the infusion only? That might be another choice if you're having such a hard time with the pills. Also, lemon drops helped me with the nausea.....also crystal light or lemonade.
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