CMF Question
Comments
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Robin, I was post-menapausal when diagnosed due to a prior hysterectomy so I didn't have the same situation as you but I did have a friend who was 38 when diagnosed and her periods stopped also and did not return. She was told the same thing as you were told...that she would go into menopause and that in the meantime there was a slight chance for pregnancy. Wish I could help you more as that might be a scary scenario! :-)
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LOL Rita! No way do I want to get pregnant! I don't have to worry my husband is fixed I'm just trying to figure out this whole thing in my mind. If I don't have a period, how can I get pregnant, but he said something about the egg still releasing. So I was trying to figure out if that meant menopause or no menopause. So far it's still not back. April will be a year. I had one small incident of small bleeding but other than that...nothing.
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Robin3, I sent you a private message so look for it.
Have a nice day all!
Hugs,
Mandy
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I hope everybody is doing well! It's been quiet on here the past few days so I'm just bumping up our thread so it's easier to find.
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Hi Ritajean, Mandy and everyone! I have not been here for a long time. Had my last check up and mammograms last September and all normal. With 3 years of clear mammos now I've been told I can go back to just regular annual mammos with none of the extra diagnostics and only have MO check ups every 6 months, so that's coming up next month. Yay! Still taking estrogen blocker. I had tamox for 2 years and have been on femara for a little over one year, so just under two years to go. Feb 2010 is when I found the lump so I'm 4 years out and 3 years post treatment, and doing quite well.
Thanks again to everyone here for helping me get well.
Love and hugs,
Jean
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Hello all:
It has been quite sometime since I have been on "the boards." I finished my 2nd round of CMF on 01/15/14. I ended up in the hospital for 1 week due to low WBC counts and ANC. A normal ANC is 1,500 and above. Mine was 400 when I was admitted and two days later had dropped down to 246. I was so scared I was going to die. I was Neutropenic. They finally began naprosin (sp) shots in my belly everyday for 3 days thereafter and my counts began to rise. My OC has recommended reducing my CMF by 10%. She states this will NOT reduce the effectiveness. I will also be given the Neulesta shot after I finish the 14 day oral Cytoxen...on the 15th day. I am scared about Neulesta since I was in pain from the second Naprosin shot in the hospital. I was prescribed a fast acting Oxycodone which helped with the pain within 5 minutes. How long do the side effects from Neulesta exist? Are the shots affective in helping to keep WBC counts up? Is it worth it? I guess the good news is...every culture they did in the hospital came back negative. I did develop mouth sores on my lips (all the way around), I was miserable, it was difficult to eat and drink. They began treating me for an A-Typical infection which helped. my fevers were spiking to 102 in the evenings. One CT Scan revealed some fluid and enlarged lymph nodes on my lungs but OC believes this was from virus. I was having shortness of breath (much better now), but does chemo cause this through fatigue also?
I begin round 3 tomorrow. Beginning the half way point. Oh, yea, thinning hair...I can't stand it! Does it continue to thin throughout the entire process or does it ease up at some point?
Any input would be so greatly appreciated!!!!
Liz
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Oh Beanius....so glad to hear from you and especiallly hear that things are going well for you! YAY!!! How are you doing with the femara?
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(((((Liz))))) I'm so sorry you are having all this trouble. I had 6 cycles of CMF with the oral C and had low WBC toward the end. I do not know about the SE's you are having. I'm so glad you are okay and doing a bit better. I'm hoping some others will have more info for you. Please take care and get well quickly.
Ritajean - It's great to see you here, it's been a year I believe. The femara is okay. I had some awful fatigue and achiness but I have increased my exercise and started glucosamine/chondroitin/msm supplements. I am doing better with that but got a UTI this weekend...part of this is just getting older too but I like to blame BC and Femara - ha ha ha! I turned 56 last Nov. But really no complaints because I am able to do most of what I want and I'm cancer free. Yay! Still happy with my treatment choices, including CMF! How are you doing?
Hi to everyone! Sending much love and prayers and thanks again!!!
JeanBean
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oh emq... am so sorry that you are having so many problems. I do think that you need the neulasta shots to keep up the wbc. I had no problem with the neulasta but some of the gals who experienced side effects took claritin before the shot and that seemed to help. Maybe one of them will pop on and tell you more about this.
I avoided the mouth sores by rinsing my mouth with biotene beween treatments and asking for ice chips to suck on while the treatments were administered. You might give them a try. I also used the biotene toothpaste.
As or your shortness of breath....trust your onc unless it gets worse. Then be your own advocate and pursue the issue. Your onc is probably right.
I do know that chemo dosage can be reduced and still be effective because they reduced mine. Everyone is given a standard dosage to begin and there is leeway to adjust it either up or down depending upon how each individual reacts to the drug.
Hang in there. You are on the downward slide now and you can do it! Hugs!
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Jeanbean: Thank you so much. I began my 3rd round today. my numbers were good. Afterwards, I went to see my breast surgeon and received a positive report. She did not feel anything "abnormal" and said I am healing well from the lumpectomy.
Rita: The mouth sores were all on the outside of my lips, I have not had any inside. The shortness of breath has gotten much better. It seems as the mouth sores cleared and the fevers went away, my breathing became easier as well.
I got clearance to do a follow-up with my Breast Surgeon in 6 months. Yea! I don't have to go back until August.
My ANC was 3,200 and WBC was 5.0 today. If it is marginal when I go for infusion next Thursday, I will ask for a Naprosen shot at the very least since I will not get Neulesta until the 15th day. I have 13 days to go before that will happen. I just don't want to end up in the hospital again.
Hope everyone has a nice day. Stay warm.
Liz
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Hi emq2
I'm so sorry you are having so much trouble. I did not tolerate the nulesta shot well so they switched me to nupogeon shots. Instead of one big shot. I had 3 shots, one every other day. I got chemo on wed. My first nupogeon on Friday, my next on sunday, then on wed. By the end I required 4 shots to get through the treatment. I had all the CMF all at once in my port every other week. I did not shed all my hair. It thinned. But I am Italian and have a ton of hair, most people couldn't tell. Just me and my hairdresser. Read back a few pages, I was diagnosed back in Dec. 2012, then had lumpectomy in Jan. Chemo from feb to may. Then radiation. All the ladies on here were wonderful and answered all my questions. I'm happy to help. You can inbox me if you need to. Good luck!
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Hi Liz
I sent you a private message but I also wanted to say that my hair shed and shed and shed--I thought I'd need a wig but I never did and I did not need a scarf or anything else. My hair is not particularly thick but it was fine. I did not wash my hair every night--only every third night and I did treat it gently.
Hope you this cycle goes much better than the last one.
Take care.
Hugs.
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emq2,
I hate that you had such a rough round. I had to take the Neulesta after my 4th treatment. My bones were sore!!😳😳😳 my back, thighs, neck etc. My onco diluted the dose so that I received 1/2 to 3/4 of full dose. That did the job. I still had soreness but could tolerate it
Robin3..... The dreaded period😒😒😣😣😁😤😤 mine came back 2 months ago. I was 9 months without. My periods are horrific. I have an appt with my Gyn to get rid of it all. My period is like all 9 missed periods into one. I had fibroids before breast cancer & took birth control to reduce my flow. I kind of think that increased my BC risks but now that it's back I want a hysterectomy.. Now!!!!
Ann
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Ann: Thank you. I will ask my OC about the dose as I did get side effects from Naprosin shot after the second one.
Liz
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Thought I'd give our thread a bump.
Hope everyone is doing well. I had treatment 7 of 8 this week...one more the beginning of March. I'm hanging in there. I can't believe its almost done. I'm now waiting to hear about rads. I will have to travel for those. Other than that, not much to report. How is everyone doing?
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Hi Macy! Congrats--you are in the home stretch. I found rads easier than chemo and you will do great. If you have any questions i can answer, private message me.
Liz, I hope you are doing much much better now.
And everyone in treatment, take care and here's a Valentine Hug.
Hope everyone has a great Valentine's Day!
Hugs to all.
Mandy
Hugs
Mandy
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Congrats to being in the home stretch Macy! Mandy was a great source for me when I started rads! :-) If you need anything just ask! Happy Valentine's Day all! xo Robin
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Wow, everyone's been quiet for a while. I hope that means all are doing well. If not, give us a holler.
Sending hugs to all.
Mandy
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Hi Mandy and all the ladies
Well I am 3 cycles down (6 infusions down 6 to go). I can't say it's been an easy ride so far and I only cope by saying I will do this cycle and see how I feel about carrying on with the next. By the time the next one arrives I've sort of given in and just do it. In my heart I know I need to complete but to be honest I think doing the regime I'm doing (all IV day 1 and 8 then 20 day break) seems endless. I hate the day 8 - I've only just recovered and doing it again. May seems a long way off until I complete! The neulasta after day 8 has helped. My hair is shedding and it panics me - I keep wondering if it will hold out until the end. It sheds horrendously after washing hair.... Sending me into panic mode.
I'm on my break now after 2 infusions in past 10 days so I feel more positive that I get some kind of normality. I think what surprises me with CMF is that there are so many differing regimes and timings and I do wonder what sways one oncologist to do their prescribed regimes. It doesn't always follow the histology / Oncotype / age etc. I've tried to find the research but struggle. Suppose I'm always looking for answers!
Hope everyone still having treatment doing ok.
Sending warm wishes xx looking forward to summer
Lilly x
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Hi Lilly!
You are in the home stretch now having completed the first half of your tx. Way to go!!!!I
I know--there are so many variations of how CMF is given--I wonder how any doctor figures it out and why they use one variation over another.
About your hair: I had 8 tx IV every 3 weeks. After tx 4 (at the half way point), my scalp started itching and tingling (not a good sign for keeping your hair) and I did major shedding. I actually went out and tried on wigs. And then, just like that, the shedding reduced and I never lost enough hair to need even a scarf. So you are at the half way point--perhaps the shedding then is standard--I don't know. But hang in there.....I was very gentle with my hair--only washed it every 3rd day and I did not use a blow dryer which I viewed as harsh--I don't know if that helped me keep the hair or not.
Hugs to all.
Mandy
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Just checking in to say hi and I hope everyone is doing ok!!!!
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thank you Mandy - you always put a positive swing on everything! Thank you for encouragement with hair I'm sure hoping you're right and the shedding peaks then slows down because I really think I'm peaking at the moment. I like you am only washing every 3rd day but because I'm having major hot flashes at night I wake with a head of frizzy hair that I'm dying to wash sooner! I don't know how gentle we need to be on this regimen but my hair is very fragile and I'm babying it because of the amount of shedding. I want to tie it back some days but not sure if the pressure from the band is recommended. I feel the pressure despite the band being fairly loose.
Thanks again
Lilly x
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Lillypoppy, it sounds as if you have pain in your scalp if even a loose band is a problem. I remember my onc was unsure about my hair when I had the scalp tingling, but the gals on this board encouraged me and they were right...it did thin but not so much that I needed even a scarf to hide it. Perhaps if you pull your hair into two loose pony tails you can get it out of your face if it is bothering you or perhaps use a scarf as a gentle headband. I had cut my hair quite short before I began chemo so I did not have the problem of pulling it back. But I am someone who washes her hair daily so I found reducing how often I washed my hair made me feel like I had greasy, dripping hair--in reality I did not , but that is how I felt. Hang in there.
Mandy
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Oh, hair, hair, hair! It's such a source of stress and worry!
Like our other side effects from CMF, it seems hair changes vary from person to person.
I only had scalp tingling once, after the one and only haircut I've had during chemo. My stylist was really gentle with my hair but I remember as I got up from the chair, my scalp felt really tight. I got worried...even though I had no shedding and had just gone through tx#3. A few days later, my hair shed for the first time and then stopped after a few days. About a month later, it started shedding again (no scalp tingling beforehand) and shed for an entire month! Huge clumps would come out in the shower and when I would try to gently comb it out, even more would come out. After a month though, it stopped then started again a few weeks later but not as bad.
As it is, I've lost about 50% of my hair, which sounds like a lot but no one can tell except for me. I don't have to wear a scarf or a hat or anything and my hair is still growing in length, it's just a lot thinner. Funny enough, I've been doing the wash and wear styling with my hair and it has more volume and is wavy. It's still not my favorite look but as I say now, a bad hair day is better than a no hair day!
Lillypoppy, I would recommend not putting your hair in a ponytail if you can avoid it. Just treat your hair gently and wash it only every few days. I wash mine every other day, sometimes every 3rd day and just wet it in the shower on the days I don't wash it. My hair has actually grown longer during treatment so I know that my hair follicles aren't damaged; I think just the oldest, least healthy hair was shed.
Hope everyone is doing good! I'm sorry I've been away because I've been busy lately.
Last treatment for me is next Wednesday. I started last October 9th. In some ways, I can't believe I'm going to be finishing chemo, in other ways, it has been a long haul.
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congrats Macy on being (almost) finished with chemo!
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Thank you, curveball! Hope you're doing well, too!
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thanks for your advice Macy. 😊 I hear you with your advice of " a bad hair day is better than a no hair day". I try to remember that and feel positive.
So very pleased for you your last infusion is next week. I imagine you're feeling so relieved.... Well done x
Love Lilly x
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Yay Macy! You are in the final home stretch. Congrats to you!!! Check in after you finish chemo and let us know how you feel.
Hugs to all
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Just checking in.... Yesterday was infusion number 7 out of 12. Over half way! 😊
Not feeling too bad.... EMEND is my friend ☺️
Just resting in the spring uk sunshine seeing the tulips and daffodils growing 🌷🌼
Love to all. I'm getting there x
Lilly x
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Lillipoppy: Emend was my friend too! With a little extra help from kytril. You're well on the way…great!
Macy have you finished? Wahoo! Congrats! Way to go and big hugs.
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