CMF Question
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Cab mom. what a bummer, I hope you feel better fast.
Janina- I have had 3 treatments and no change in my hair so far. I am using Nioxin which is supposed to help.
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Janina, I have just finished my treatments as of this past week and like Merilee, I am still using Nioxin products, which everyone on here recommends. My hair did shed and thinned a little but only myself and my hairdresser could tell. I was extremely happy and did like people on here suggest and babied it a lot. Sending prayers your way for a smooth #1!
Merilee and Mandy, thanks for the words of encouragement.....it was scary but hopefully it will all improve from here
! Here's hoping to sunnier days...........Sending prayers and hugs to everyone that's in treatment or just beginning. There really is light at the end of the tunnel. I know I still have radiation to tackle but I feel a huge sense of relief as each step gets me a little closer to being done.
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Merilee, Thanks for answering this question. I hope to get more responses.
I chose CMF over TC, but some people have told me that CMF has SE later, down the road. I am not second guessing myself...but want to hear from others what their experience has been like.
I chose to go in on Mondays. I play soccer on Sundays. Wondering if I will be able to continue playing soccer (entergy). Really curious more about the HAIR, EYEBROWS, LASHES, FINGER NAILS throughout the CMF cycles.
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Janina - I had minimal side effects - really almost none. I felt a bit "off" the night of, and typically took it easy the next day. I substitute teach, and initially I had my infusions on a Thurs. and blocked out both Thurs. and Friday for sub jobs. After I started I noticed that Fridays were really fine. I kept up my normal exercise - do not play on a soccer team but would think that you will feel fine by Sunday - especially with Monday infusions. I had weekly CMF so don't know if that makes any difference.
Hair - mine thinned - shedding was a bit more than normal. However, I have TONS of hair - it always sheds and no one noticed except my husband (who saw it all over the house) and my stylist. I did not use Nioxin as my hair actually looks better now and is much easier to style being a bit thinner. Lashes seemed the same - eyebrows were fine but I noticed that I did not need to get them waxed or pluck them for the duration of chemo. Nails are fine, no changes.
All chemo has side effects and I would question that CMF has more than the others. My onc. has always told me that it is gentler, has less side effects and is easier on the patient - that said, there are those that have the rare - 2% of patients get X type of side effects. My onc. loves CMF for patients like me - oncotype 23 - in the gray area who do not know if chemo is going to greatly help them or not.
Please let us know how it goes.
Js37 - I never had a port, and SCCA had no issues using my hand, or finding veins (rotating areas every week). Hope that you get the good nurse this week!
Congrats to all who are done with treatment, or almost done!!!!!
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Janina.....Get those nioxin products. Use them faithfully and most people won't even know that you're shedding a little.
As for the CMF side effects............I've done pretty well. It's been two years now for me since I finished the treatments and I've noticed no side effects except for the chemo brain that seems to be getting better with time. I have joint issues but that is from the Arimidex and not the CMF. I know Lisa has some liver problems from the CMF. That is why it is so important to drink lots of water after your treatments to flush those chemicals out of your system.
Overall, I think you'll find CMF pretty doable. Good luck with #1. I continued to bowl on 2 leagues while doing CMF chemo and golfed when the weather cooperated. My golf game was a little off because my strength was not the same, but I was out there anyway and I'm back to normal now. I'm sure you'll be able to do pretty much whatever you want to do. In fact, I felt better when I was doing some type of exercise instead of just sitting around waiting for something to develop.
Thinking of you as you start this part of your journey.
Rita
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Hi everybody. Had #3 today and I'm about ready to pass out now. I will now have Decadron and Benadryl added to my regimen because of that weird shortness of breath/chest tightness/cough thing I was experiencing after the first 2 sessions. I'm pretty bummed about the Decadron, as I was hoping to avoid the use of a steroid, but it (without question) helped with that SE. I only felt a little shortness of breath with the urge to cough with VERY deep breaths and that went away VERY quickly. Before, I was having trouble even with shallow breathing and it went on for 30 to 45 minutes after each chemo session. My counts are still great, though, so no Neulasta so far for me. The Benadryl really wiped me out. I definitely can't go to these sessions alone, because I was ready to pass out on the way back to my parents' house to get my 3 year old (good thing my mom was driving) and had to camp out there for an hour before heading home to get my 6 year old off the bus! Hoping exhaustion is my only SE this time around and that I don't get a cold (that really made last time the pits).
Hope everyone is doing well!!
Oh, Janina....no hair loss for me so far...not even noticing more hair shedding than normal. I do not use the Nioxin products...just using Suave Humectant. My hair NEEDS moisture to be able to brush thru it. I don't wash my hair every day and I NEVER dry it. I'm a stay-at-home mom working part-time from home, so it's easy for me to slack on the styling, though.
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Thanks for the info Judy1973! Good news about the hair. I hope I am that lucky!!
I had my first treatment at 10:00 this morning. It was a peice of cake...so far!! I told her that I did not want the steriods (Dexamethasone sod phosphate). She explained to me that the steriods are for joints and muscles and that I would only be receiving a small amount (10 mg) to the usual 20 mg. Since I play on a soccer league, I went for it. I definitely want to continue playing and dont want to have to sit out due to pain in my joints/muscles. I can always stop using it if I find I want/need to.
I did notice my chest tightening. I mentioned it to her, but she didn't understand why it would be.
I was given Granisetron for nausea. My insurance approved EMEND (very expensive they said..3 pills for $400 and I would need 6/month), but I will wait to see if I need them before I pay my co-pay for them.
To be honest, my nurse, who has worked there for YEARS...said she doesn't ever see the CMF ordered. They always use the newest. If it weren't for this thread, I wouldn't have known about CMF to ask for it. They still get blown away with the knowledge I have on all this stuff just from researching and reading these threads/posts.
If you go under chemocare.com you will find out everything about all the chemo meds and their SE's.
Thanks for all the info!! I appreicate hearing it from ladies actually going through it.
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Janina
Good job getting through your treatment today. Now you really want to drink a ton of water. I even get up in the night and go get a glass. You don't want that stuff setting in your bladder. Personally, and I think I may be the only one on this thread, I like the way the steroids make me feel. Maybe I am weird.LOL
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I've had 5 cmf treatments and very little hair loss. I do get a burning sensation on my scalp from time to time and especially in the shower and I think it's about to start falling out, but so far it's hanging tough. I've one more to go and constipation has been the worst Se for me. I found the treatments much easier than I expected.
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Ladies.....did anyone that has gone through this treatment have pains in the stomach or puffiness in the stomach? under the rib cage? under the breasts?
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5 days after my 3rd treatment and still feeling fine. No SE from the shot so far. I only used 2 zofran and 2 compazine this time, for the first two days as a precaution. So far so good. I am working out everyday and have not had to take any time off work. I have been able to do anything I want to without limits. The other thing that I have realized is that I am no longer afraid.
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I've now done 6 cycles of CMF with one more to go. I do 2 consecutive weeks of IV and then 2 weeks off. At the same time I do 2 weeks of the pills. I've lost all of my hair and my main problems have been insomnia, constipation and a terrible taste in my mouth which has meant that I haven't eaten solids in months but just survive on nutridrinks. I've had no nausea which is one blessing, I suppose. The good news is it's worked fantastically well!
Good luck!
Katiexxx
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Katie11 I am doing the exact thing you aer with the pills, 14 days on, 14 days off. You are the first I heard that has lost all their hair. My dr said that is very rare. I am sorry that happened to you. I am glad everything else is working out though.
had my first CMF yesterday and so far...nothing at all. I feel like the same ole' me. I work out everyday and am a stay-home-mom.
Thanks to all you ladies for your responses, advice, etc!!
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Katie11, I agree with Janina.....I am so sorry that you had to endure losing your hair on CMF and I know it's really rare but my heart goes out to you! It does sound as though you are incredibly strong and are that you're doing well.
Janina, happy to hear that you're doing great after your treatment.
Merilee, you sound as great as ever.......Keep going strong!
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Wow! You gals are all troopers and doing so well! I'm so glad that you're all doing so great! Keep marking those treatments off your calendar.
Rita
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Still feeling good 6 days out. Those of you just starting take heart. I just decided to do my work out 2 times a day instead of one. I am working on strength, using small weights. It makes me feel fabulous and when I strain I can curse at the cancer and chemo and think, "you won't beat me" and that feels good.
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Merilee, you are such an inspiration to ALL and I don't know how you do two workouts but GOOD FOR YOU! So happy that you're feeling good. I know it's NO fun but you are truly giving it your all and that's awesome.
Well, small update on me......I'm actually feeling pretty well today and know that each day is going to get better. Still having the pains under my breast area but they are becoming less and less.....YEAH! All the pains in my back and neck are now completely gone and even my legs are feeling like their old selves.......now to getting this weight off. Man......you guys will definitely hear me shouting when that happens.
Good luck to ALL that are still going through treatments. Hugs to each of you!
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Well, I'm on day #3 out from my 3rd treatment on Monday and I feel pretty darn good. I don't know if I can curse Decadron anymore. I'm tired today, but I haven't had ANY nausea this time around. I woke up with a little sore throat this morning, but it's mild and bearable. I'm hoping today keeps up this way and tomorrow is even better. Thursdays have been my down day, so I'm not getting my hopes up, but so far so good...
We have a HUGE snowstorm coming our way, so we're hunkering down here. The kids had a snow day today, probably more in anticipation of what's to come & the uncertainty of when it will begin, because it's not bad out there today.
Hope everyone continues to feel better with each day!
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Is the steriod the reason for the weight gain? If so, I will not allow then to give it to me. She gave it to me Monday (my 1st treatment) but said it was such a low dose (10 mg) and since I play soccer, I went for it. I don't want weight gain, I just got rid of all the weight from having my son 2 years ago.
Today I am miserably tired. I am usually awake until after midnight every night. I call that "my time" when everyone is asleep except me. But last night I laid down at 8:00, but still didnt sleep until 11:30 since my 2 yr old was bouncing around. I slept until 10 a.m. this morning...ODD for me. Even though I am a stay-at-home mom, I get up by 7:30 every morning. I am exhausted as I type now. Hopefully this side effect is just my body getting use to it, because I cannot do this. I have ADHD...so this is so NOT me! lol! I have a pot of coffee on now.
I am having my hair colored today. Although we shouldn't, I thought it would be ok since I only had one treatment. I am blonde, so going somewhat darker...so if hair thins, I wont look "spotty".
So far no sickness at all. I seem to stay hungry, so feel I am starving myself because I will NOT allow it to make me eat. I have always ate like a bird...so will not allow the "weight gain' SE to get the best of me. All my meds say "loss of apetite", so it must be the steriods.
Ladies, thanks again for guiding me through all this. SO nice to know "what's to come" because of you all.
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Janina, That's the same dose of Decadron that I got and I have gained a lot of weight and have not been over eating. Not trying to be a downer but I think it's a combination of the Decadron and the CMF or at least that's what one lady on here has said and from research, it appears to be true. I'm also sure that it affects everyone differently so hopefully you will be one of the lucky ones that will not gain weight.....unfortunately for me, I was not a lucky one in that area....I've gained over 40, which is killing me because it took me forever to lose my weight after having my child but I guess it's better than some of the se's that come with the other regiments so I'm trying to remain positive that all will be well in the end and I'll be able to lose it. Good luck.....
Judy, Glad that you're still doing good on day 3......hopefully you've got this one behind you with no se's! YEAH!
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All my meds say "loss of appetite". I will definitely NOT do another steriod. I only had that one, so will stop it come Monday's treatment. thanks for the info.
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Janina
I have been doing the steroids and have not gained an once.
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I think the steroids are the weight gain culprit, but it obviously varies with each person. I'm so sorry, Cabmom, that you've had the weight gain even without overeating. You are NOT the first person I've heard say that. It stinks...as if we don't have enough going on, we also get to feel less attractive than we'd like to and then we have to work our tushies off to get the weight off after we've been working our tushies off fighting cancer. I was against the idea of steroids for this reason, but I don't really have a choice now, since they definitely made my shortness of breath side effect go away. Breathing clearly versus the possibility of weight gain isn't a hard choice for me. I've always been very slim...didn't really even gain much with either of my pregnancies, so if I do gain weight it'll be a whole new experience for everyone around me, but it's okay...you do whatever it takes to get thru this. I have felt better this time around then with my other 2 treatments, too, so I'm thinking that might be from the Decadron, too, and that's a pleasant surprise...another reason to look past the possible weight gain. I feel like ever since I started the chemo, I've been maintaining and hovering around the same weight even with eating less from not feeling great, so I think the chemo meds contribute, too. All the advancements they've made with providing us with the comforts of anti-nausea meds have all but eliminated that stereotypical skinny, frail cancer patient you see on TV. We don't want to be that...but we don't want to gain either. We're just stuck with whatever happens.
Janina, try it without the steroids and see how you feel...you may decide you WANT them and it's still only a possibility of gaining weight...not a definite. I, too, had the 10 mg dose. It's all a crazy learn-as-we-go thing, isn't it?
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Judy1973, thanks but you're right, we do what we have to do and it really is individual and hopefully won't affect any of you that way. I certainly will be praying that it won't for any of you. I dread trying to get this weight off but thankfully that things went as smoothly as they went. I guess I'm just THANKFUL for a lot of things
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Hi Judy and anyone else wondering about weight gain on CMF:
Steroids can increase your appetite and cause some weight gain. But for some reason, one of the side effects of CMF is weight gain. If you google CMF and side effects and weight gain, you will discover any number of studies that indicate that the weight gain is from the CMF. This is not a time to starve yourself but if you feel up to regular exercise, it will probably help. I was very tired from the CMF and did not exercise, so that probably did not help. And I did not have steroids for most of my time on CMF (only for the first two of eight tx) and the pounds still went on even without steroids.
I would hardly eat and I would gain weight. That was when I did research and found the answer in studies that showed CMF patients do gain weight. But the good news is that the weight gain is not permanent---I have already lost half of the pounds I put on. I plan to lose it all!!!
So don't worry about weight gain--you'll be done with treatment before you know it and you can lose the weight then.
Hugs to all.
Mandy
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Well if I had to gain weight in order to become healthy, i would definitely do it. But, it there is a way of preventing it by taking away something I do not need (steriods), then I will...so that I am not struggling with it later.
My nurse told me that the side effects are usually loss of appetite, and I did read that on each of the meds in CMF, yet, I am reading different on the threads...so I am going with "real life situations".
It is what it is, I will deal with the outcome at the end...again, if it is something I can prevent, I will definitely do so. I can definitely see how being tired will stop you from exercising. I work out often, very active...and today (day 3) I have been so miserably tired I couldn't imagine working out. I am beat!
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I keep forgetting to ask you ladies when I get on here...have you all stopped using anti-perspirant and what are you using now? I am having the worst time finding something that's as effective. I tried Tom's of Maine deodorant and it actually MADE me smell. I was better off without anything. I finally started using my husband's brand (AXE), because they have a deodorant that seems to work pretty well and last. I cannot stand the idea of emitting body odor...I'M NOT A PUBESCENT TEEN ANYMORE! Just another annoying thing about having an estrogen-receptor positive cancer...darn products and their need to contain methyl-. Just curious what you have all been trying.
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Thanks Mandy.....I knew you could explain it better than me
...plus you did all the research, so Thanks! Glad that your weight loss is going well......way to go!0 -
Janina .... my two cents (cuz it's free) ... I took the steriod drip each and every time of my 12 infusions. Yeah, it was a bit difficult to get a good nights sleep on infusion day, but I was more than happy to take that over even the thought of feeling nauseated. As far as weight gain, started my journey with a "well" check physical at 133lbs, after diagnosis, surgery and 6 months of chemo my weight was pretty steady at 120lbs. My apetite was pretty good, a day or two a month not feeling like eating too much, but pretty much ate any and everything I wanted.
Remember, bottom line .... you are doing what your doing for the beneifts of long term health. To jump over a hurdle or two of weight fluxuation, a bit of hair thinning, etc. will probably seem pretty small in the grand scheme of things. Your going to be fine gal, and you'll probably be amazed at how 6 months will fly by and you'll be looking back at this time in your life .... short term "pain" for the long term "gain" !!!!!!!
Judy, since you asked .... been using Ban (unscented roll-on) for about 25 years .... and still using it.
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I was going to ask this exact question! I have been using Tom's of Maine and I feel like I stink badly. The last few days I started using my old Dove deoderant but I know I will have to give it up when I have radiation. I am open to any suggestions.
I had my 6th of 8 CMF, yesterday. The nurse explained they are no longer using Zofran and instead I had ond decadron pill and an IV of something new - sounds like OSILLI??? Anyone heard of this stuff? I actually feel better today than I did after rounds 4 and 5. As for weight, mine has been fluctuating within 8 lbs but I haven't gone over where I was when this all started. I usually don't eat much the week of treatment but weeks 2 and 3 I eat everything in sight. Today I could only eat pancakes and mash potatoes.
Regarding hair - I have been losing ALOT, especially in the front, where I usually had a lot of highlights. I have been afraid to color my hair since October. Does anyone know if Henna is ok while having CMF? I definitely don't want to cause more damage or loss. My hair is baby fine and I was told people with fine hair tend to lose more. I only noticed major fallout after treatment 4 and I'm now considering cutting is real short so that it will all grow in uniformly after the treatments. Is it too late to start Nioxin when I'm almost done with treatment?
Cabmom - Are you having Neulasta shots? Could that be causig the pain? I have lots of aches and fatigue. I just figure it is part of the CMF.
I hope everyone has a good week. Stay well and strong!
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