CMF Question
Comments
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Lower back pain started with aromasin. Actually, just about everything hurts from time to time with Aromasin.
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Thanks timbuktu, I'm on Zoladex Injections so it might actually be from that. my next onc appt isn't for another 2 weeks, might give him a call I think.
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You guys have been so great. Port is in and I had my first CMF this morning. I feel a little foggy. I am going back tomorrow for the nulestra shot. My levels are good but they want me to have it just in case? They also want me to take claritin d to help with any side effects from that or from the iv.I'm not sure. I've had SOOO much information thrown at me in such a short time, that I am having brain overload. Since I just had the iv this morning. I actually feel ok. I ran into work for a few hours. Everyone just wants to know everything! So stressful. So they said to keep on top of things with my nausea pills. Take one every 8 hours for 3 days to be sure I don't get any nausea. I also am wondering about the diarheaa or constipation. I'm not sure which to take to head off since it's too early to have any side effects. All I can say is one treatment down. 7 to go! Is it May yet? Thank you all so much for being somewhere where I can go and ask these questions. I'm sorry you are going through all of this too but am happy to have the company. I already appreciate you all. Thanks :-) Robin
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@Robin3, I feel for you being peppered with questions at work. One reason I requested telecommuting is so I wouldn't have to deal with that! One thing your post reminded me of. I never needed to take any anti-nausea meds except the dose I got at the infusion center. I might not really have needed that either but decided not to take a chance. I never really felt sick to my stomach while on CMF but did get terrific gas and belching. Hope that's not TMI, but don't be surprised if you get that too. My oncologist said it's because the CMF affects rapidly growing cells, which includes the intestinal lining.
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Hello Robin3 - So happy you found us hear and so sorry to hear you have to join us!! Everyone here is so wonderful. I read what they told you so I will just share a bit about my experience. First I want to say the Clariton is for the side effects of the nulasta shot, be sure to take this pill as they directed, I usually start it the day I get Chemo and don't stop for 5 more days so at least six days total. The nulasta shot starts slow and lasts (hence lasta
). The side effects of that shot can be awful, I hope you don't have them.I have been on several treatments, the first one was the one that caused me to lose my hair so I'm no help to you there, however my MO said that CMF usually will not make you lose your hair just thins a bit, but it was to late for me since I already had a dose of taxotere.
The CMF treatments I have been on are C in pill form everyday and MF portions infusion once a week, I did this for about 4 weeks. Then went to C in a drip and MF portions as infusion and this is once every 3 weeks. I had my first one last Wednesday, went back Thursday for nulasta. I don't seem to have as much luck with the chemo as the other girls I take my nausea pills but still don't feel great and also fatigued alot. My counts have been low several times, including today
.As for work, I'm really happy I can work a lot from home, I'm trying so hard not to get the flu and colds that everyone seem to have right now. Since my counts are low a lot I don't want to get sick and have delays, I just want my last 3 treatments so I can start to move forward with my life.
As for the big "C" or the big "D", for me it's the "C" I take senocot and miralax but it still takes a few days to get things moving, this time I even had to call in the big guns after 5 days and double dose the extra strength senocot
Like the others say stay moving when you can but when you can't don't overdue it!!
Oh and I'm 46 so just about the same age.
HUGS to you and everyone else!!!
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I tried to think of it as morning sickness. Something you have to go through to bring about life.
It will be over before you know it. I could't share what was going on with anyone for a while, but I wasn't working so that was easy. But it sounds as though your friends care about you and caring ... it's the best part of this whole nightmare.
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You guys are great. They told me to take the nausea medicine to keep ahead of it. You are right the Claritin-D is for the nulestra. I laughed out loud at the terrific belch and gas. I have 3 boys, and I owe them a few..so bring it on. This has been a couple of months of sheer roller coasting. I do know people mean well, but you mention cancer or chemo....and i get the shock, tears and i spend more time making them feel better. I'm keeping the chemo quiet. It's my business til I get a handle on it. I'm very lucky to have a boss and director bending over backwards to make sure i'm ok. And if i'm tired ..i go home. Thanks guys for being somewhere else I can have feedback from ..unfortunately you had to go through this but thanks for making this not so scary for me.
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Hi Ladies,
Hi! I have been diagnosed with triple negative for second time, nine years later. They cannot say for sure if it's a recurrence or a new growth, but it was 1.8cm calcifications near my lumpectomy scar. No lymph node invasion, no signs of mets (had CT's and bone scans). Back in 2004, I had 4 ac/4taxol plus 30-some radiation treatments (it was TN then also with neg lymph nodes). So, I'm two weeks out from my mastectomy and reconstruction and now preparing to start chemo. I've inquired with two onc's and both have said the same thing...I can do 4 rounds of Taxotere/C (Not taxol since I've already had it) OR 6 rounds of CMF - either treatment would be every three weeks. I was opting for TC since it's only 4 rounds as opposed to 6, but now after reading about the potential for permanent hairloss I am getting scared away from that. Also, I did have some neuropathy issues with Taxol but nothing terrible. However, this time could be different and could be permanent since it would be second time around with a taxane. Seems like CMF's side effects are so much less. Has anyone else had the option between the two? In the end, like all of us, I just want to LIVE. However, if my chances are equally as good either way, I think CMF sounds better. Does anyone who's been thru CMF or TN for second time have any insight or comments? thanks!
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@love123, I'm on my first diagnosis and not TN, so I can't directly answer your question, but we do have one thing in common: we both got scared by the possibility of permanent hair loss with taxotere. My onc originally suggested TCx4, but once I found out about the 3% chance my hair wouldn't grow back, I asked him for another alternative. I used a website called cancermath to look at the likely outcomes of either chemo. Overall, CMF was a little bit less effective than TC... a net difference of two percent survival over (I think) ten years following treatment. In other words, if 100 patients treated with TC were compared to 100 similar patients treated with CMF, in ten years there would be two more survivors in the TC group than the CMF. You might want to go to that site and put your diagnostic information in and see what the statistics are for treating TN with CMF. They may be very different from the stats for ER/PR+, HER2- cancer. I find the pictogram view of the results the easiest one to understand.
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Thanks curveball. I will check out that site. My case is interesting in that if my new growth is in fact a recurrence, that means the AC-Taxol left a cell that remained dormant for nine years so I'm happy to go with a new regime. If it is a new cancer, that means the AC-T did it's job and taxane worked for me. It's a toss up! And only God knows the answer. I am definitely leaning towards CMF for reasons sited though. I agree that the % difference is not enough to worry about. My doc said the same thing. He said if he felt one chemo absolutely gave me a better survival rate, he would tell me that and would not recommend the other. Makes sense. Did you lose your hair with CMF? Sure would be a nice bonus to not lose it, but I won't hold my breath.
Did you lose your hair with CMF? Keeping my hair sure would be a nice bonus, but I won't hold my breath.
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love......Hair is always a big issue for us women! I had some thinning of my hair but not too much. Only my hairdresser and I seemed to notice it. I think the majority of women just have thinning but there are always exceptions. I never needed to have a wig..........wasn't even close, but know of a few you had exceptionally thin hair to start that did buy a wig. When I chose my treatment plan, my onc said that 4 AC treatments were equivalent to 6 CMF treatments and the effects were the same. I didn't hesitate to do the CMF. I am now 6 years out. Hugs to you as you make your decisions. Once you have a treatment plan in place you will be more at ease with this journey.
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@love123--I noticed there was more hair on the floor and in the tub, but it didn't look like there was any less hair on my head. But I had very thick hair to start off with. What your onc said about the two percentage points is the same conclusion I came to. The statistics for TC and CMF were so close, if I did CMF but cancer came back, I'd never be able to say "if only I had done TC, this wouldn't have happened", but if I did TC and my hair never grew back it would be something I couldn't ignore. And if I had done TC and lost my hair and cancer came back anyway, I would have been absolutely furious! For me, the choice came down to "which of these options am I less likely to regret, regardless of the outcome?"
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Hi Love123! I was someone who made the choice between 4 X CT and 8 X CMF every 3 weeks(my onc believed in 8 doses). I wasn't triple negative so my situation was different from yours, but it was a second cancer for me with the first one having been 23 years earlier. It was believed that this was a new cancer. Anyway, I read like a mad woman about the difference between the two and felt very comfortable choosing CMF. I had every side effect that CMF can offer but my blood counts were pretty good so I never needed neulasta and I did keep my hair...or at least enough of my hair that no one except for me noticed the thinning that I had. This is a personal decision for you, and no one can tell you what to do but I'd suggest that you just read alot and pick the treatment that you feel the most comfortable with. All the best. Mandy
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My doctor also felt it was a toss up and I got to make the decision. Based on my oncotype score of 19 and the fact that we were doing this because it had spread to my node and i had an aggressive grade 3 cancer. I felt I should do some chemo, but the difference between the two was so slight I had NO hesitation about doing the CMF and my doctor was in complete agreeent. And now I can sleep at night. I've only had my first CMF yesterday just had nulestra shot an hour ago. One treatment down. 7 to go. And today i feel ok. One day at a time!(And hair was a MAJOR concern for me) I will admit it did factor into my decision to do the CMF. That and the side effects. I just couldn't bring myself to do the big gun one unless i HAD too.
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Robin3....don't forget the clariton, I don't know how many days they told you to take it but I stopped day before yesterday at 6 days and last night and today have had the worst pains in my back and legs, next treatment I will take the clariton longer it obviously was working.
Glad your first treatment went good and your feeling ok!!!
Since I started CMF my hair is growing back, my husband and sons can't believe it. There is even enough to put in my fingers and pull on
wow the little things that excite me now!!!!I hope it comes back sexy curly!!!!
Happy Valentines Day to everyone!!!!!
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They only told me to take the Clariton the day before the day of and the day after. No? Longer? I'll do whatever. I don't want any freaking pain! The nurse said Clariton D. Another one was arguing it today. It was 26.99 I'm taking the clariton d until it's finished. :-)
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Robin - get the generic that's what I have it's Loratadine, my clinic has a pharmacist right on staff he said this would be fine. I'm certainly not an MD, I have had more them my share of the side effects, some experience none. I would think of it this way, what does it hurt to take claritin for a week? I look at some of the other meds I take and think claritin is the most minor of them all. I personally will take it longer next time, please only do what you think is best for you!!
The story behind the claritin is that the DR's did not figure this out a patient did, she was having chemo and the side effects from the nulasta then one month had allergies and was taking and noticed it helped with the pains. My MO is the one that told me this then I researched it and it's correct.
Please remember I am the one with ALL the side effects maybe you will have none, I can only wish this for everyone!!!!
HUGS my friend!!
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Atall. Believe me taking a Claritin and having no pain is better than not taking it and having pain
. Thanks for sharing your story. It really helps. I'm sorry you are having so many side effects. I hate to say it but this sucks. But I will fight it. Xoxo. Robin0 -
My hair never fell out on cmf. I also felt great.
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I had my first CMF infusion treatment today by way if an IV. They put mild steroids in one of the drips. I'm not getting that shot you get the next day. Don't know why but the onco nurse did explain that the steroids were to combat issues.
I went to work afterwards and even went to Olive Garden with my 16 yr okd son. Didn't feel like it, but he worked and saved money to take me out and I was feeling a little loopy but I figure go tonight, rest tomorrow. I took tomorrow off because the nurse told me I will feel like I'm speeding or jittery.
I go every 3 weeks. And I have to go back in a week for blood count. I called the Cancer society and will be going to a seminar on wigs and make up. U get them free afterwards. Not sure in going to lose my hair and my nurse seems to think its not a huge concern with my treatment but better safe than sorry. I'm a huge ice eater due to me being anemic. I'm actually chewing some now. Lol. And I drink a lot of water. My nurse said those who drink a lot of liquid have to drink more because our body is adjusted to the volume & will eliminate at the regular rate. So I guess I will live in the bathroom
Well happy Valentine Day ladies!!!0 -
Hi Softness1, congrats on your first chemo, sounds like you have it all under control
I don't have the neulastra shot the following day either....I did when i was on another type of chemo..so far blood work has been good without it thank goodness......so far 2 cycles of CMF and if I hadn't lost my most of my hair with my other chemo , this would have only thinned, not coming out in chunks like the other one, so you may only have thinning that like many is not noticable to others only to you.Having the steriods does make you 'speedy' however I felt and feel good throughout CMF and worked straight through. I have to keep up with an active 3 year old at home so I perhaps need steriods every day...lol but I'm managing fatigue (actually have insomnia) ! yesterday was my first night i fell asleep on the couch at 1030pm!! shock horror..lol.
Glad you got out with your son, how nice he saved his money to take you out, how could you say no!
Hope you have a great 3 weeks with minimal SEs
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Hi Traii, omg a 3 year old!!!!??? Yeah you may just need the steroids... Lol. I remember those days and kinda miss my little boys. Traii Really enjoy this time. Its the best. I found lost audio tapes of my sons. I uses to sing & during rehearsals breaks my sons, then 1 & 3 would grab the mic. Sooo cute. My date yesterday was trying to sing at 1 or rather trying to eat the mic breathing heavy & crying & the oldest was asking tons of questions in his little voice. Now the 3 yr old is 19 sophomore physics major still asking questions but with a deep voice.. It's so cute & sad
I'm still feeling pretty good. I'm up taking my anti nausea pill. I have the day off to make sure it goes smooth. So far so good. I love coming in here. It makes me feels connected. Everywhere is I am a cancer victim. At work some pple look at me with sad eyes & 1 really friendly guy is quiet around me. I've known him for 13 yrs & he's a jokester. & he now avoid me & when he sees me he speaks in a funeral directors hush voice.
The women on this board are funny, inspiring, loving, courage and supportive. I am some times moved to tears, smiles and giggles reading some post.. It truly helps my journey0 -
Oh love your story softness re your son...i do treasure every bit of my 3yr old even if he is cheeky, active, talkative, bubbly and curious...its all part of learning!!
Its sad when people dont act the same around us just because we have bc or no hair or nausea or no nails or anything doesnt mean our personality had to change!! Im a jokster...love a laugh I think thats why I never told many people about my situation that dont really need to know if u know what i mean....i dont want them to change around me...or feel sorry for me ... i hate those 'oh you poor thing' eyes people have once you tell them, i know its only initial reaction but I'M STILL ME...I am still walking around with a smile on my face I mean what are we going to do mope around ...we're beating this thing!!!!
Hope the guy at your work can ve the jokster he was with you...maybe you show him whos the joker..lol
This board has helped me. 16yrs ago I had the big C and there was nothing like this for support ..its great now...real people to chat with and help us along the way:)
Take it easy....coming off those steroids can be a 'downer' lol....so do what u gotta do today then rest up....!! Let your big boys cook dinner!!0 -
Ok so it looks like i had a bad reaction to the nulestra shot. I spent night fighting waves of nausea and sweat rolling down my back. Didn't sleep one bit. Ended up back at dr in morning to get bag of fluids and nausea meds in my port. That was not one bit fun. I don't even remember friday at all (this happened thurs night). I basically slept away the day. Def had pain from shot. They may not give me the shot next time or a different kind. Plus changed up all my medicines to better help with nausea. My port is still sore but today I feel good. It's sunday and I feel a LOT better. One chemo down, 7 to go. Please tell me I can do this. That it is necessary so I don't ever have to do this again. Hugs to you all. Robin
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Mandy1313, Curveball, ritajean...thanks so much for your words of wisdom! I have decided on CMF and am not looking back! Full steam ahead now! I start Feb 25. Would have liked to start sooner, but wanted to time it right so that my 3rd week is Spring Break. We had already put a deposit down on a house in Florida and it's nice to have something to look forward to.
I had terrible neck and shoulder pain with my neulasta shot last time, so I am hoping to not have it this time around. Day 3 was always the worst and it was due to that darn shot! Not only that, but my insurance company said it was experimental (this was 2004) so they did not cover it. $4600 per shot x 8! Needless to say it took years to pay for it. I know it's now covered but I still don't want it! I will talk to my onc about it next week. For those of you who didn't have it, was your onc hesitant at all in deciding it was ok for you to skip it?
It would have been so nice to know about these boards back in 2004. It's been so helpful. I am so used to Facebook though that on many occasions I have found myself starting to "like" one of your posts, but of course the "like" button is not there! It always makes me laugh out loud! Funny how easily we get programmed! haha!
Happy Sunday everyone!
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Hi Robin2,
looks like I'll just be about two weeks behind you. You had your first treatment on 2/15? Mine will be 2/25. Are you doing 6 total?
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Hi love. I'm doing 8 treatments. One every two weeks for 16 weeks. My first treatment was the 13th my next will be the 27th. I did not like that shot. Will be talking to my dr about continuing with it. Is this over yet? While I'm grateful to be doing the lesser type of chemo. This has not been much fun. Good luck!!
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I dont have the neulasta shot. So fsr bloods been good and have one cycle to go.
Robin sorry to hear youve had bad ses from it...i gad the shot for other chemo regimes and apart rrom a few aches n pains it was manageable.
Good luck on your decisions all0 -
I didn't have Neulasta shots either. I had a different CMF recipe (oral cytoxan daily with M & F once a week by infusion). My blood was checked once a month, and while my white cell count did go down, it was never low enough to need the shots.
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Hi Love123!
Glad you were able to make a decision and to go forward. I had CMF x 8 (every 3 weeks), given IV. I did not require a port and my onc checked my bloods and I never needed a neulasta shot. I kept most of my hair which I had cut short in a style that hid any hair thinning from everyone (to some extent, even from me). I did have some of the other side effects but while they were not fun, they were "doable."
All the best to all my CMF sisters.
Hugs,
Mandy
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