CMF Question
Comments
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Candie..........YEAH! It's so good to hear from you! How do I find the bc.orgchatters on Facebook and get connected with it? I have a facebook account but it didn't come up when I searched for it.
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I had an opportunity to talk to the oncology nurse today, so I asked her about the discolored tongue. She says thrush is white, not brown. So I guess that discoloration is just the top layer sloughing off.
added later: the nurse also asked if I had a tongue scraper. I don't but it sounds like it might be a good idea. Where would I buy one, a regular drug store?
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curveball, my tongue was a little brown too at one stage, but when I was having Taxotere....it looked like I'd been drinking that much coke that the acid burnt into my mouth..... when i brushed it it seemed like it was coming off....sorry TMI it was disquasting, but a couple of days it eased and no more 'peeling' have no idea what it was from...I did have like a thrush in my mouth not long before it....gotta love drugs hey, look what they do to our outside, so long as they are doing their thing on the inside !
Well cycle 2 began for me.....1 more cycle to go....whoo hoo
How did you go Atill ?
Hope you are all feeling wonderful
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No chemo for me today
. Although I'm feeling good my counts were to low and that's from the low doses of CMF, today was supposed to be my increased dose. I'm super bummed I wanted to get started again so I would be that much closer to being done. Dr told me he never gives nulasta with CMF but for me it looks like it's going to be the way to go, said my body is so sensitive to all the drugs. I don't care for the nulasta it gave me the body aches even with the clariton but if it keeps me from getting sick well then bring it on!!So while I'm stuck in the house this week I will continue to organize and thin things out, last weekend I got 2 rooms done, felt so good!!!
Curveball - your right the thrush was white, my entire tounge was white it was so disgusting even the Dr said "oh god" when he looked at my mouth. My entire mouth was full of sores and blisters at the same time, it was not much fun!!! Hope your tastebuds are returning.
Traii - so happy your on the last cycle....YIPPIE for you! How is your weather are you near where all the flooding is?
Did anyone else ever have trouble with low counts while on CMF?
Big HUGS to you all!!
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Atall45- sorry your counts are too low to continue your chemo. I know you just want to be done with it. My counts never really went too low. Doc said I must have good bone marrow. I hope you build them back up quick so you can finish and be done with it.
Traii- you must be excited to be near the end of treatments. Hurray !!!!!!!!!
I measured my hair on top and it is about 2 inches now. The sides seem to be growing slower and the back is getting thicker just not long. I will take it. It is real hair.
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@Dianarose, my hair is about the same length. I had it cut really short when I started chemo and now it's at an awkward length--too long to wear in a plain Afro and too short to do anything else with. I put yarn braids in it in June before my MX because I had no idea how soon after surgery I would be able to put my hands over my head. As it turned out that wasn't a problem, but the nice thing about the braids is they can stay in for quite a while. So I did them again about a month before I finished chemo (figured I might be too beat to bother with my hair, and I was right), and again last weekend. They really should have been done the weekend I finished, but I was in the hospital, so they got postoned.
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Sorry to hear atill your counts were low
id opt for neulasta shot too its a biy if bone ache but hey it does the job! My neurophils were at 1.5 so i just made it min 1 here to have chemo!!! Hoping next week will be ok! Onc suprised they were ok considering i had passed chemo thought my bone marrow wouldnt recover as quick!0 -
Happy Friday to everyone!!!
Dianarose - yea on the getting your hair back, not matter what length it's real, I have peach fuzz or Peach wire, it's more like wire then soft fuzz. My friend has a 7 month old and I would give anything to have my fuzz be that soft.
Traii - oh you barley made it!! I was at 1.08 but my WBC was low as well. The minimum here is 1 as well but he said with both counts low and the way my body reacts and the fact they were going to be giving me my first increased dose it was to big a risk. I'm so happy for you that you were able to move forward and be closer to your final treatment.
Curveball - Are you getting out and about more now?
Ugh...My husband woke up sick this morning with a sore throat, looks like one of us gets the couch or spare bed for a few days!!
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@atall, I haven't been out in a few days but did work a full schedule yesterday (telecommuting) and planning the same today. A local kitchen/bath company is giving a free seminar across town tomorrow and since the bath in my house needs repairs, I think I'll go to that and see what ideas I can pick up, even though there's not a whole lot you can do in a bathroom that's only 5'x6'! The one major thing I'm thinking of is turning the tub into a shower. I can't remember the last time I took a tub bath. My mom says though, that she wouldn't want to have a house with no tub at all and since there is only one bath, that would be the result. I admit a tub can be handy for washing large items, but it occurs to me I could buy a watering trough and keep in the garage until needed, which would serve the same purpose.
I'm still continuing to feel stronger all the time, and my tongue is nearly back to its normal color. Things can still taste slightly odd, but much, much, better than two weeks ago. I can't believe it's February already. I think I saw a Home Show ad on a bus the other day. That's a sure sign spring is on its way. Hopefully I will be strong enough by then to go take in the whole thing. I went last fall, but neither the Home Show nor I was up to our previous form! However, construction seems to be picking up around here so maybe there will be more exhibitors than in October. The February show is usually a bit bigger anyway, as I recall.
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Atall....I had low counts, too, while doing CMF. I had to have the neulasta shots and they did the trick. I guess I was lucky because I had no side effects from the shots.
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Ritajean...it is bc.org chatters
I think someone has to bring you in because it is private....friend me on facebook... i will send you a pm.
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Candie...I was looking at that as well you can't find it when you look on facebook, is this only for those of you lucky gals that are through treatment?
I am hoping my counts are up on Wednesday...Holly smokes EVERYONE seems to be sick right now, including my husband. So far even with my counts low I have managed to stay well. Here's to more hand washing!!!!
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My blood counts were lower than normal but in the safe level until the 7th infusion. I had one Neulasta shot because the dr didnt want to put me on a plane with such low counts. The shot made my back ache a lot on the flight but it went away within a day.
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Well suprise suprise, I got my bloods done yesterday and despite WBC being 3 last week and Neutraphils being 1.5 this week they jumped to 5.5 and 3.5......(with no Neulasta shot) so I finished cycle # 2 today and have 1 more cycle to go ! Count down is on...... bring it on
Hope you ladies are all doing well and those going through treatment have minimal SEs
How'd you go Atill? did you go this week to check again?if so I hope all is well and BCs are all fine to continue treatment
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Wow Traii.....That is such good news! YEAH!
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Traii - Yea glad your counts are back up!! Wow one more cycle YEA!!!! please refresh my chemo brain how long is a cycle for you?
Timbuktu - thanks for your information. Always nice to get opinions from the ladies that are ahead of me or have completed treatment already.
As for me my counts were up as well 4.12 wbc and nutes were 2.12 I was super happy to be able to get a treatment. Going back today for nulasta, they are being very careful since they upped all the meds and my counts have a tendency to tank. Taking my clairton so hope the body aches aren't to bad this time. Nap time, talk to you all later!!
Big HUGS to everyone!!
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Good to hear Atall. Hope that Neulasta shot isnt causing pain.
My tx is day 1 & 8 M and F bit thru IV, with the C bit 'oral' from day 1 thru to 14. So then after day 14, I have 2 weeks with nothing then start again!!
There are so many ways Im hearing that this is given all too confusing...lol
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atall.....hope you handle the nuelasta shot well! I was lucky. I was prepared for the worst and had no problems at all! Hugs!
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Traii- I was on the same regimen as you? Just curious if you lost your hair? I am 3 months PFC and it's about 2 inches long in places, but still very weird.
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Dianarose...i lost most on Tax and now my eyebrows are thinning and the longer bits of hair i had at the back is going
Its the C bit that does it....i was on it 16yrs ago all my hair went and grew back ok. Wow 3 months out 2 inches thats great....so not all over your head yet???
I remember way back when mine started growing back it was all even though...0 -
Traii- my hair is getting more even. I had it trimmed at the beginning of it growing out because the ends were like wire. It is thicker in the back. I am still using the nioxin shampoo. I figure it will look a lot better by the time winter is done. I still wear a hat a lot. Sometimes it's easier anyhow. I hope you are feeling ok.
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Good to hear its getting even. Is that shampoo you use to help grow it?
Ses all good
Last pills today and vrwak for two weeks. Count downs on for last cycle! :-D0 -
Congratulations on count down!
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Hi Everyone,
I'm starting my CMF treatment tomorrow. Going for my port placement today. I can't believe I'm typing these words and that this is me I am talking about. I will be getting the CMF once every two weeks for 16 weeks. 8 total treatments in all. Can anyone give me tips for a newbie like me. I tried to read through these threads. But it seems some of you may have had multiple treatments? ( sorry) And I can't figure out what side effects to be aware of. I am aware of the fact that my hair is supposed to thin. I can get either diarheaa or constipation. Mouth sores? Watch for infection when my blood count drops? Anything else? I'm planning on working straight through as my doctor feels the side effects will be minimal. I also realize I have to plan on fatigue. Are we talking can't crawl out of bed fatigue? Any help you can give me would be great. And good luck to everyone and congratulations to you who are done with treatment.
Robin
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@robin3, I recently finished 6 months of CMF. There are many "recipes" as my oncologist calls them, for giving chemo with these three drugs, and I was on a different one than you will be--6 months with the cytoxan every day in a pill, and the other two in a weekly infusion, so our experience may not be exactly comparable. Having said that, I didn't have much fatigue until maybe three months into treatment. I started needing to lie down and rest in the afternoon about then, as I recall. By the last month, fatigue became a major issue, but as it turned out I was getting pneumonitis, which ended up making me very sick indeed. Between fatigue and pneumonitis, I was flat on my back and didn't work at all for about two weeks, including 8 work days. I haven't seen in any of your posts how old you are. I think that can make a big difference, and also whether you have generally tended to be a high-energy or low-energy person. I'm the latter. I've never been one who has the urge to be active all the time. I'd just as soon (sooner actually!) sit there with my nose in a book or noodling around on the computer. They say exercising during chemo actually increases your energy level, but I didn't exercise before chemo and can't imagine it wouldn't have made me even more tired than I already was.
I'm working half time and telecommuting. I did work during chemo, but always took time off the day of my infusion, and usually only worked 3 hours a day instead of four. I plan to retire later this spring, so I just used my accumulated vacation time to make up the shortfall. I also could have used FMLA and sometimes did. I don't think I would have made it all the way through if I'd had to go back and forth to my office--that would have tired me out before I ever got any work done. Also, be prepared for some sleep disturbances. I got night sweats that sometimes woke me up two or three times a night. There's some possibility that "chemo brain" is as much due to lack of sleep as anything else. I don't know the nature of your job, but if it's one you can't do well in a fog of sleep deprivation, you might want to reconsider your plan of working right through. You might want to contact your HR department and fill out the paperwork for FMLA, so you have it to fall back on in case you find the fatigue gets to be too much. You might also want to consider telecommuting, if your job can be done that way, so you don't use up all your energy just getting there.
About hair...our experience may not be comparable there either, but I don't think I lost anywhere near 25% of my head hair, and I have very thick hair to start off with. Before chemo, it was nearly down to my shoulders, but I had it cut to a short Afro style when I started that part of treatment. I figured any hairs that did fall out would be easier to clean up if they were short than if they were long. During the 6 months, my hair grew, and is now I think almost twice as long as it was six months ago. I think I lost some eyelashes here and there too, maybe more than ordinarily. I also lost almost all the hair on other parts of my body, but nobody sees those except me! One of the other ladies on this thread (sorry, I don't recall who it was) did lose enough hair to need a wig, so that can happen, but usually it doesn't.
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Robin I was on the 3 week schedule. Didn't need a port, never got mouth sores. Hair thinned a bit but no one could tell but me and my hairdresser. I did catch a cold that lasted a couple of weeks while my husband was over his in 2 days. Just be careful, wash hands a lot. When in crowds I would wrap a scarf around my face.
The constipation was the worst because I didn't start taking laxatives for 2 weeks. Dont wait if you have that problem. I took two dulcalax and stool softeners every day.
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Thanks so much for the quick responses. I'm 45. But a very very high energy person. I work part time as a speech assistant with special needs kids and am a Zumba instructor
curveball so you are sayin you didn't even lose 25% of your hair? My doctor is very low key with the side effects. He thinks they will be minimal. I hate sitting around. But the more I sit the happier I am to sit are there things you can't eat or drink or more sensitive? Being diagnosed around the holidays and then being in the middle of a blizzard (I'm in Connecticut) has been horrible. I've hate to wait extra long for results. And even going forth with chemo my onco test was delayed. They needed more tissue a d had to go back to the sample. It's been so frustrating. But with that said I have excellent doctors and couldn't ask for a more caring approachable team to go through this with. They really are awesome. I'm sitting on the couch now having had my port put in today and will be having my first round of chemo in the morning. The onco nurses have not been able to talk to me much cause of the 35.5 inches of snow that has been dumped on us. We've had state road and office closings. I just want to get started and move on. Thank you all so much in advance. Thank you curveball for giving me your experience. It really does help. Robin0 -
Thank you too Timbuktu
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Robin, I think your Doctor is right about the minimal side effects. Most of the side effects with CMF can be easily controlled in most cases. The majority of us lost some hair but not enough to be significantly noticeable. Of course there are always some exceptions to everything. Mouth sores can usually be avoided by asking for and sucking on ice chips while doing your treatments. I also used biotine mouth wash and tooth paste while taking the treatments. Lemon drops controlled most of my nausea and they will keep a close watch on your counts. After a treatment you need to drink plenty of water to wash the chemicals through your body.
Although it is a scarey thing, the CMF is not as terrible as some of the other treatments and seems to be equally as effective for early stage breast cancer.
We will help you through this. There are many wonderful gals on this site. We were all nervous about starting our chemo journeys and we do understand. Hugs to you!
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Robin, I think RitaJean has pretty much summed it all up for you.
I get 'the runs' (sorry too much information ) when I'm on the chemo pills ( C bit) but after that , 2 weeks on chemo break) I am fine
I have an active 3 year old so I'm always on my feet, going out and general house hold duties etc so rest for me is when my son is asleep...lol.....I still work 3 days a week for 4 hours a day and thats even the day after chemo. I don't have specific down days, all I say is LISTEN to your body. When it says that it's tired, rest...sleep.....when you're feeling fine Zumba it up girl ( though don't over do it) like the girls on here told me.....you can feel soooo energetic one day and then the next have a little 'flat day' where you are exhausted and just need to rest......and there's nothing wrong with that.
CMF is definetely a breeze from other chemo regimes trust me on that one!
Good Luck with starting chemo, we are all here for you to answer ANY question(s) that you have.
Starting chemo is hard. Though you will get through it just like all of us have / and still are
hope the weather is getting a little better there.Girls, don't know if I've asked around before however any of you experience lower back pain...don't know if it's from picking up my son but walking does it and also my thighs and torso can hurt too....???
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