CMF Question - Page 170 (2024)

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Beanius Member Posts: 1,494
October 2010 edited October 2010

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eileen - Huge, gigantic congratulations to you!!! Thanks for posting this great news, you are an inspiration to us just going through it all. 7 years, hurray!!!!! And here's to many more!!!
cabmom Member Posts: 291
October 2010 edited October 2010

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eileen, That is such wonderful news andsuch an inspiration to all of us! Thanks again so much for sharing......
ritajean Member Posts: 4,042
October 2010 edited October 2010

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So how's everyone been doing? I hope you're all geared up for Halloween!
Eileen...it is always nice to hear from long-term survivors who have been through the same chemo plan. Thanks for adding a positive note to our thread and best wishes for continued health!
DesignerMom Member Posts: 730
October 2010 edited October 2010

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Hi ritajean and everyone else. I always come here with my questions because I know a lot of you are long timers and have answered these questions yourself. I am now in radiation, just finished #9 of 33. So far things are quite uneventful.....other than terrible scheduling delays. So here is my next big decision. Hormone therapy!!! I am 54 and was perimenopausal when diagnosed, hadn't had a period for 5 months. I had two since last March (I personally think stress induced). My Onc wants to start me on Tamoxifen for 2 years then Aromatase inhibitors for 5 more. As I have a minor, non symptomatic blood clotting condition (caused many miscarriages), I am worried. Tamoxifen is known to increase blood clots and strokes. My Onc very non chalantly said "I can just take your ovaries out instead". I'm not inclined to do that either! Then she talked about some shot to shut down estrogen once a month. I must say, this hormone therapy is my most disconcerting decision. I do not take medications as a rule, prefer to let my body heal on its own. To be on a chronic med for years (with SE) just doesn't feel right. I'm scared to take it....and I'm scared to NOT take it. I would love to know about some of your decisions and experiences regarding hormone therapy. As always, thank you for your good, generous guidance!
candie1971 Member Posts: 2,467
October 2010 edited October 2010

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Hi Designer Mom, I am in my 4th year of arimidex which is an armotase inhibiotr. I do have some die effects, but I would be afraid not to take it. good luck with your decision.
Eileen...congrats on 7 years...what good news!!
RitaJean...hi!! always glad to "see" you
ritajean Member Posts: 4,042
October 2010 edited October 2010

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Designer Mom....the hormone therapy scares the crap out of me, too. I am in my 4th year of Arimidex, too....just like Candy. I have joint aches and pains, have trouble sleeping, and have vagin*l dryness. I feel much older than I really am. Still, I agree with Candy. I am afraid NOT to take it. The alternatives are so much worse. I have a friend who took only Tamoxifan because the aroma based inhibitors were not around then. She just celebrated 16 years of survival.
This is such a tough decision to make and only you can make it for yourself. I am not familiar with the once monthly shot to eliminate estrogen so I can't give you any input into that. You might want to do some research on it. Like you, I took no medicines before this journey so the idea of fillingmy body full ofpotent drugsdoes scare me. I guess I'm just more scared NOT to take them. If I didn't take them and the cancer returned I am the type of person that would have asked myself over and over again if the newer meds could have prevented a recurrence. If I take them and still get a recurrence, I know that I have done everything I could have done to prevent it.
You will make the right decision for you depending upon your feelings and situation. We are all different. We all think differently and our bodies respond differently to drugs. Let us know what you decide and remember that there is no wrong decision if you feel confident with it. Hugs to you!
cabmom Member Posts: 291
October 2010 edited October 2010

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Ritajean, after reading your last post.....I'm thinking, it's not just ME with all the pains. I too have all the pains, especially when I get up after sitting for a while. Takes me a while to start moving again. Do you feel that this might be coming from the Tamoxifen or in your case, Arimidex instead of the chemotherapy? I've only been on Tamoxifen since the end of May but boy, I am definitely feeling older than I think I should be. I'm not SICK or anything like that just sore all the time. I keep praying that this annoying pain on my left side will go away but it seems to just be there. Some people think that this could be from the radiation and I stopped doing free weights because that seem to aggravate it way too much.......I did have a bone scan in May (I think) and all was okay. I just would like to feel NORMAL again but I imagine....everyone feels this way!
Aussiemumof2 Member Posts: 13
November 2010 edited November 2010
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I haven't written anything here for some time but have kept up with this thread since I finished CMF. There is some really good information on this thread. I was interested to read about DesignerMom's concerns about Tamoxifen. I like others feel to scared not to take Tamoxifen, but hate the idea of taking it. I've taken it for 3 months but am having a 2month break from it to see if my 'trigger thumb' problem clears up in this time. This started out of the blue, after about 1 month on Tamoxifen. I am also very stiff when I stand up & having problems with tight muscles & cramping. It's really difficult to know if this relates to the chemo or Tamoxifen.
I wonder if anyone has considered taking 10mg instead of the usual 20mg. I'm not sure if this will make any difference & would be interested in anyone elses comments here. My surgeon/Onc seems open to it but will make a decision on 23rd. Nov.
For those who are going through the CMF treatment, May I encourage you by letting you know that I finished in June, & have recovered very well from it. However, my energy does run out at the end of the day but I am managing to do most of the things I want to do. Kindest wishes to you all. Vicki
DesignerMom Member Posts: 730
November 2010 edited November 2010

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aussiemum-I think I read on the Tamoxifen thread that some ladies take the 20 mg. in split dosages (10 mg in am and 10 mg in pm). For some reason, some of those ladies think they have fewer SE dosing this way. It's worth asking your Onc about. Hoping your SE become fewer and fewer....and then none!
EastCoastGrl Member Posts: 206
November 2010 edited August 2013

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Hi all,
I have just read a BUNCH of pages at the beginning and towards the end of this thread. I am 43 and because of my age it has been recommended to do chemo. Up to me. I am awaiting an Oncotype score though. (should get it tomorrow when I go to my Onc appt) I was told by my onc that if I do decide to go with chemo that it would be taxotere/cytoxan x4/every 3 weeks. So, I looked up info on that and it scared me completely. Nueropathy, possible permanent hair loss, nail loss, etc etc etc. I had decided I would use the cold caps to save my hair (no help for eyebrows and lashes though...and permanent loss on those would be crappy too) and use ice packs or peas on my feet and hands to help ward off neuropathy and nail loss ( all of which can be permanent!!) So, I have been having a really rough time with all this.
So, I researched and found out about CMF. Seems like a MUCH better option for me! BUT, I wonder about reconstruction. Didnt see much talk about that here. Anyone undergoing that with the tissue expanders? I want these out of me as soon as possible and my PS says probably exchanged some time in January/Feb. But, with the CMF it looks like it could be next May or later! Is it possible to wait and start chemo after I get the exchange??
Also, the steroids. I would also LOVE to skip these if possible. I have enough anxiety and don't need anymore "hyperactivity". Sleeping issues, etc. So, as I read this is also possible to skip as well?
And, lastly, is there neuropathy of feet and hands with this chemo treatment also? Did any of you use ice on your hands or feet to help prevent it?
As far as the inserts with meds, I haven't read a one since my BMX! Too scary. I don't take (well didn't before this) meds of any sort really because of fear of SE..and here I am having to take all kinds of stuff. Tamoxifen is another I'm not thrilled about having to take......
I'd really like to go this route if I do chemo...not sure what my doc will say though. I see her tomorrow so we will see!
raincitygirl Member Posts: 700
November 2010 edited August 2013

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EastCoastGirl - I had your diagnosis and ended up with an unexpected oncotype of 23, so chemo it is. I chose CMF because I want the fewest side effects and the possibility of keeping my hair. To be clear, each CMF treatment is two visits (usually) so I have actually been three times now.
i just arrived home 10 minutes ago from round 2 of CMF. I have had no neuropathy, one mouth sore, some dryness, but geez, it is quite doable so far. After round 1, I turned down steroids and did just fine without them, also turned them down today which was fine my onc. I also am plenty anxious enough and don't like not sleeping, so they are gone. Today, they offered ativan for relaxation - why not, I have no place I must be today. My oncologist will not let you use the cold caps and the onc nurses seem to feel that the ice on head, hands, and feet is a waste of time.
There is some concernt that the cold cap prevents full circulation of your chemo drugs.
I was told that I had to be in chemo in 6 weeks, no later than 8 weeks. I don't know how people time their reconstruction relative to chemo as I had lumpectomy.
I am also an east coast girl, but living in Seattle....I am around if you have any questions or you can PM me.
poohbear21 Member Posts: 23
November 2010 edited November 2010

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EastCoast Girl: I did the CMF with tissue expanders. My PS said that it was not a problem to keep them in for up to a year + [ had my BMX April 14]. I finished CMF almost 4 weeks ago and will start my radiation this Wednesday. I am looking at March hopefully for my exchange surgery, so it will be close to a year that I will have my expanders. With respects to the steroids during IV treatments, I did half of the dose. I was still a bit restless a few days after, but I felt it helped me with the nausea and SE. CMF was a longer road for me [6 cycles total; 2 weeks on/off, oral cytoxan pills 14 days, IV days 1 and 8] but it was definitely worth it.
socallisa Member Posts: 10,184
November 2010 edited November 2010

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good for you pooh, glad you are finished..
East Coast, they didn't even give out steroids for my treatment..
don't know when they started that...CMF doesn't usually have neuropathy
you will do fine
raincitygirl Member Posts: 700
November 2010 edited November 2010

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pooh bear - since you are done, how did your hair do?
poohbear21 Member Posts: 23
November 2010 edited November 2010
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jodimaca: Not to discourage you, but I did lose about 50-60% of my hair. I fortunately started out with a lot of hair and it has some curl to it which made it easier to conceal where it had thinned out. Now on a positive note, my husband, sister and hairstylist are the only ones that said they can tell because they know how much hair I usually have. My friends and co-workers say they could not tell unless I pointed it out to them. So.. they are either full of s@#* or they really can't tell I finished the last of my cytoxan pills on October 7, so I am still shedding. I don't think as much as it had on the chemo, but still more than I would normally shed. My onc told me 4-6 weeks after last dose I would still have shedding. I am so ready for my hair to grow back to the way it was. I hope this helps:)
I am interested to know myself, how long did everyone else continue to shed???
poohbear21 Member Posts: 23
November 2010 edited November 2010

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Oh forgot to mention...
Designermom: I am pre-menopausal [36 yrs old, or should I say 36 years young ] and am very concerned about the SE also. I have been on Tamoxifen for almost 3 weeks. I have been spliting my 20 mg dose, half in the am and the other half in the pm. My onc said it was fine to do so.
DesignerMom Member Posts: 730
November 2010 edited November 2010

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EastCoast- I also did a lot of research and chose CMF instead of TC. My Oncotype score was in the low range. Though I had one positive node, they said chemo was up to me. I was lucky to find another BC friend who had a similar diagnosis. Her top notch Oncologist from Sloane pretty much said there was no proof the chemo would benefit her (her Oncotype was very low). He said if she insisted on doing chemo (which she felt she needed to), he would only say to do CMF as the side effects were fewer and not permanent. That was a good enough recommendation for me! I completed CMF at the end of September. It was very, very doable. I still have most of my hair, no hand or foot neuropathy. I asked if I could do without steroids and they put just a bit in my infusion. I slept like a baby throughout the 18 weeks of chemo. My energy is pretty good. I'm now in daily radiation and usually walk the 40 blocks to my treatments. That really lets me sleep at night! Best of luck with your decision. These ladies on this thread are so informative and generous. Let us know how it goes.
raincitygirl Member Posts: 700
November 2010 edited November 2010

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DesignerMom - Very helpful to hear what your recommendations were from Sloan. I just started my second round today, so my third infusion. Did you have your C by mouth?
Have a good evening,
Diane
DesignerMom Member Posts: 730
November 2010 edited November 2010

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jodimaca- I had all of my CMF by infusion once every 3 weeks. It seems the pills are given more on the West coast for some reason. I think the result is the same. I know Beanius is also taking the pill regimen. Stay strong, it will be over before you know it!
raincitygirl Member Posts: 700
November 2010 edited November 2010

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Calleigh - I would have loved to have had the C with the unfusion! Swallowing those damn pills every day for 14 days makes me crazy, but I guess each oncologist has his/her way of doing things!
Off to swallow another tound of toxin...
EastCoastGrl Member Posts: 206
November 2010 edited November 2010

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Thank you for the replies!
I have researched and filled my head with all this chemo stuff and now it seems I won't be doing it.
I got my onco score this morning and it was a 9. My doctor said I'm actually in the negative with going with chemo. Risks of chemo don't outweigh the benefit. Altho, I have to say I am a little unsure. She was so glad to see that it came back low, she had guessed I would be in the intermediate range because of my grading. My risk of recurrance is 7% (factoring in Tamoxifen). So, she said she does not recommend chemo, however, it is still up to me if I would like to do it. She did say that they do not do the CMF which is the only I would consider anyway.
I think I am going to go with my path reports and onco score and skip chemo. I hope I am making the right decision. So hard. Glad, grateful and so thankful I got a low score but still have a bit of uneasiness. But, as she said, chemo is not 100% either.
Thank you all again for the info on this thread. I am more informed on things I never knew I would ever need to know about!
raincitygirl Member Posts: 700
November 2010 edited November 2010

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EastCoastGrl -That is fabulous news - If I had a 9, I would make the same decision for sure and what they said about benefit outweighing risks matches what I have been told, I just came out a little too iffy. Be happy! Never heard of a place that doesn't do CMF though!
Have a drink to celebrate tonight and have one for those of us on chemo who can't
EastCoastGrl Member Posts: 206
November 2010 edited August 2013

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thank you jodimaca!
raincitygirl Member Posts: 700
November 2010 edited November 2010

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EastCoastGril - are you off to rads soon?
EastCoastGrl Member Posts: 206
November 2010 edited November 2010

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jodimaca- I had a BMX and nodes were clear so no rads were prescribed for me. I had thought I would at least have to do chemo and now neither. So, I am very, very grateful but feel strange in a sense....time to get on with life I suppose, however it is I do that in this "new" life of mine. A whole new outlook and overall feeling for sure.:)
Beanius Member Posts: 1,494
November 2010 edited November 2010

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3 days to finish C pills of CMF # 5!!! I'm alive and well, still have lots of hair, this is doable!!! Hope all are well and HAVE A HAPPY FRIDAY AND GREAT WEEKEND!!
raincitygirl Member Posts: 700
November 2010 edited November 2010

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Thank your lucky stars, girl! You are already beginning to live your new normal and I note your wonderful tag line above about living in the present without regret or fear. We are all forever changed by these experiences, as are our husbands/partners, and family members. My husband has brought me cards, flowers, or fine chocolate- sort of like 30 years ago, but I love it much more now. My daughter has struggled a bit with this and I realized today that she is always adjusting my hair in the same spot. Previously she has said it was because it was out of place or sticking up but I knew today that wasnt the case - she admitted that she can see a slight, very slight, thin area on my scalp, damn it. My son, who really doesn't want to talk about this at all, sent a message in the middle of his department meeting asking if I was ok after my treatment - my new normal means I get to see my husband and kids in ways that I never have imagined and so appreciate....those moments frame my outlook now so much more than ever before. Not sure why I am so corny as I face Friday night - maybe cause I can't go to happy hour
raincitygirl Member Posts: 700
November 2010 edited November 2010

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Beans = you know I prefer to call them CaCa pills But you are right, even behind you by a few, I can see that this is doable. Happy Friday, wish I was on a real bar stool right now
ritajean Member Posts: 4,042
November 2010 edited November 2010

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Beanius.....isn't it nice to finally see an end approaching? And you're doing it!!!
Beanius Member Posts: 1,494
November 2010 edited November 2010

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jodi - Caca pills is the perfect name for them...2 more days & then 2 weeks off!! You are doing great and have a fantastic attitude, you will not believe how fast this all goes!!
ritajean - yes!!!!!!!!!!!!!!!!!!!!! I am so glad to be getting there. I will make it! And I so appreciate all the advice and encouragement through this.
Gigantic hugs to you all!!! XXXXXOOOOO

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CMF Question - Page 170 (2024)

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