CMF Question
Comments
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cabmom, I had minimal side effects, and I hope you will too. Had one or two uncomfortable days after treatment, with slight nausea and feeling tired and drained, but after that I'm feeling well for the rest of the 3 weeks. Never any mouth sores. One uncommon SE which I have is that the eyes are watering excessively on some days. The most drastic of my SE's was the hair loss, which I stated to notice after 2-3 weeks. Haven't lost all of my hair, but most of it (it was thin to start with), and now I'm wearing a wig, and getting a lot of compliments. People who don't know me well ask me who my hairdresser is... seriously! It is not that bad at all, but I suggest that you get a wig now, before you start losing hair, so thet the fitter can get you something that matches your hair color and style. Also, go to a good quality place, very important. I went to a couple of them, and noticed big differences among the stores. I ended up in a great place (expensive!), where the guy who fitted me told me he is the recipient of two Emmy awards (theater awards), and he does all kinds of celebrities' wigs.
Good luck, Elisheva.
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elisheva, did you IV or oral CMF? I have already gotten my wig but they had told me that they didn't think that I would lose much. I'm just hoping for the best. I know some ladies have lost quite a bit and others hardly none at all. It's just real confusing on what the differences are but thanks so much for the advice. I'm hoping that my SE's will stay minimum........
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Cabmom ... sneaking a quick peak here ... my two cents worth again ... I have pretty thin hair ... after txt number two I was losing quite a bit of hair. Hence, would pull at it and typically have about 10 strands come out each time. I rather freaked ... I was told "probably would not lose my hair". I've always had a short "do", but with what looked like a mass exit of my hair, had it cut even shorter. Bottom line ... it started to mellow in the shedding department. Yes, I did continue to shed, but looking back at my pics, I maybe lost a bit more than a 1/3 or so of my hair. Now I will say, that I have a friend here in town who also did CMF and she too had pretty thin hair. Well, upon meeting up with her last year, she was wearing a hat and said her hair was mostly gone. Yep, it was ... so I guess we are all different.
I know easy for me to say ... but try to relax, more than likely you'll not need your wig ... and if you do ... your prepared. Bottom line ... your fighting and winning and with time you'll not even be thinking of your hair !!!!!!
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Carol,
Just wanted to let you know that you are such a gem, giving advice to all the newbies here...
I'm sorry I've been so scarce for the past six months or more... sometimes, I have just had to take a break from all things breast cancer... but rest assured, I'll be coming back, to read and post when I can...
Carol, I've sent you a pm...
HUGS to all,
xoxox
Harley
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Hello Harley, great to see you popping back in here. I as well had taken a sabatical of sorts from the boards, but with an impending recon surgery I had a renewed interest to check things out. I take my que from Rita to add a bit of advice for those that might be just starting their txts. So I take it all's good on your end ?????
I'm doing pretty good on Femara with a Zometa infusion every 6 months. This coming Tuesday I have a MRI and Thurs a Mamo on ol' lefty. Just want to make sure that everything is looking good prior to surgery in January.
A pleasant Sunday eve to you all ... Carol
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Carol,
Wow! It's time for your recon.?
Yes, things are ok here.
I may be switching to Femara soon. My onc started me on Tamoxifen, and the plan was for me to switch to an AI after 2 years. I can't believe that it's been 2 years already!! I'm going to ask about switching to Femara, instead of Arimidex. I've heard good things about it. You get Zometa infusions every 6 months? How are they?? I may need to do something to protect my bones. I think I already have low bone density, from a DEXA scan I had many years ago.
To all the women who are going through CMF tx now, I just want to say that I wish you all the best of luck. I didn't get CMF, but I thought I was getting CMF at first, and the ladies here took me under their wing. They are wonderful, warm, and loving. They will have the best advice to give you to help you make it easier to deal with any of the se's you may have.
Take care, everyone.
HUGS
Harley0 -
Hi everyone-
I am in the process of making my decision about chemo and would love your input. I was originally diagnosed in April, 2007 with a 1.9 cm tumor (ER+, PR+, Her2- - nodes were clear) Did radiation and tamoxifen. Had a recurrence in same breast in August - 4mm - same make-up as before, and nodes (and pet scan) were clear. They think it was left over from either biopsy or surgery. Doctors in VA are recommending TC chemo regiman- went to Sloan Kettering - Dr. at Sloan thinks that ovarian removal and going on AI's are sufficient instead of chemo, but if I do want to be more aggressive, he would suggest CMF over the TC. Soooooo, trying to make a couple of decisions at once. Right now I am leaning towards the removal of ovaries and the Aromatase Inhibitor, but want to make sure I am learning as much as I can. I have to admit that the nausea, fatigue and potential for weight gain are all concerns, but reading these posts have been so helpful. SO, I guess I'd like any feedback, and I'll just keep reading these posts!
Thanks!
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susieb228,
This truly is a very personal decision and I struggled so much with making mine so I feel for anyone that is doing the same thing. Our situations are of course different and I had two oncologist telling me two different things and ultimately went to a third one to ensure that I was doing the right thing. In the end, I personally decided to do chemo and went with CMF. I did a lot of research and talked to a lot of individuals, both on these boards and off and I felt that with TC there were just too many potential risks for my particular case because of the minimum amount of benefit that I would be gaining from chemo but I also knew that I wanted added insurance to at least try to ensure that it wouldn't be back, which of course there are no guarantees so along with my oncologist we decided that CMF would give me that added insurance that I am hoping for. CMF still has SE's but not to the extent of TC. I know in my heart that CMF was the right decision for me and feel comforted in knowing that I'm doing all I can in fighting it. I hope that you find the answers that you're searching for. The ladies on this board were a life saver to me and wish you all the best. I'm here if you have any more questions.
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Thanks Cabmom!
I think you were smart to choose the CMF over TC. I am still not sure what I am going to do. Have an appointment tomorrow at Georgetown. If she agrees with Sloan Kettering, will probably just do the ovarian removal and AI's - but I am certainly open to the CMF as well.
Sounds like you are doing really well on CMF - that's wonderful!
Thanks so much!
Susan
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Susan, Good luck with your appointment today. Please let us know what you decide. You will feel so much more at ease once you make your decision. Hugs!
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Susan, hope that your appointment went well today.....
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Hi-
Well, it looks like I am joining the "CMF sisterhood"!
To be honest, I am relieved now that the decision-making is over and we can get down to the treatment. Since my recurrence happened while on tamoxifen, my doctor today expressed concern over just going on an AI (after ovaries removed) - since I did respond well to the hormonal therapy before. This all makes sense to me and now I am just looking forward to getting on with this. I really think that making the decision was probably just as hard as actually doing chemo.
I'll be a regular on here - looking forward to getting to know all of you and learning from you all!
Susan
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Susan ... well your over the hump in the chemo department .... what to do, eh ???? I honestly feel that CMF is effective yet doable ... and I have the hunch that you'll be pleasantly happy at the ease of txts. Do you have a start date and a txt regimen .... I know many of us have been on different regimens (with both orally taken meds or all infused).
Hope to be here to help you over the small bumps in the road ... onward and upward my gal !!!!
Carol
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Susan, we'll be here to help you through the CMF. It is very doable. Let us know what type of regiment they put you on and when you're going to get started. I think you made a wise decision.
Hey, Carol. I'm into the book. I didn't know that the author had CMF chemo. From the title of the book and her presentation at our dinner, I assumed she had lost her hair. I'm enjoying her sense of humor but it does bring back lots of the emotions and little unrelated pitfalls that we encounter along the journey. Thanks for sharing!
How you doing cabmom????
Rita
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Susan, welcome to the club and it looks like we're going on this journey at the same time. Like the other ladies have said, it is doable and thanks to them calming my nerves, I'm doing just fine with it.
Rita, I'm doing well and have felt really, really good. I was so tired yesterday but other than that, I've done fantastic once I got past the first few days after treatment. I'm ready for the next one......(bet you guys never thought you'd hear me say that
)! Hope everyone is well...........
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Hi-
I am scheduled to start December 2 - infusions every three weeks. Have to go back to another oncologist this afternoon - who I think is going to try to talk me into TC (and she wants me to start tomorrow!) My bilateral mastectomy was back on September 4 and she says we need to start chemo within 84 days (not sure where she got that number from!) My doctor yesterday said chemo should start within 12-16 weeks. So I feel comfortable with starting on the Dec. 2.
Have any of you had problems with the steroids? I think I remember reading something abotu them on here - but to be honest - I have been reading so much from all over - not even sure if this was the place.
Again, any advice/suggestions, etc would be GREATLY appreciated!
Susan
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Hi Susan...good to have that decision out of the way isn't it...
I had the CMF over eight years ago now and they did not do
steroids back then...what do you have them for anyhow??
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Okay - so I made the decision to do CMF - and then went back to the doctor who recommended TC x4 - she met with the "tumor board" today and they say that the standard of care is ovarian oblation and an AI. They are not "recommending" chemo - saying it is totally up to me. They also shared that the oncotype test should not have been performed - since the tumor was in the breast that had been radiated, that could account for the rise in the number! UGH! Feel like my head is spinning again.
I think this process is just as bad as the treatment itself.
Also, I think the steroids were prescribed for nausea, but will check with doctor again.
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Okay - so I made the decision to do CMF - and then went back to the doctor who recommended TC x4 - she met with the "tumor board" today and they say that the standard of care is ovarian oblation and an AI. They are not "recommending" chemo - saying it is totally up to me. They also shared that the oncotype test should not have been performed - since the tumor was in the breast that had been radiated, that could account for the rise in the number! UGH! Feel like my head is spinning again.
I think this process is just as bad as the treatment itself.
Also, I think the steroids were prescribed for nausea, but will check with doctor again.
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Susan, I know first hand how confusing it can be for oncologists to say two different things which is why I chose to get a 3rd opinion and made him show me in black and white the percentages of how chemo would benefit me both with CMF and TC and then I weighed the differences. I don't know if this applies to your case but ultimately you're the one that has to be at peace with your decision. There is no doubt that it is a tough decision and I ended up choosing CMF because I did want to decrease my recurrence % even though the decrease was very little. It basically just gave me peace of mind. I hope you come to a conclusion soon because I know for me it was harder to make the decision that it was to do the chemo. As for the steroids, yes it is given for nausea as well as to prevent a reaction from the chemo drugs themselves. I actually ask not to have it but on the first one they insisted to make sure everything went okay but they did reduce the amount to only half of what they normally give and then on the next one, they will cut it in half again. Don't know if it helped or not but it certainly caused me to be awake for several nights.....can't use that excuse for tonight but for some reason couldn't sleep again. Good luck with making your decision and I'm not as experienced as the rest of the ladies on this board but I'll be happy to share any information with you that I have.
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Hey everyone, I am meeting with onc on Tuesday to discuss going on CMF. Originally he was not reccomending chemo, I was supposed to start Rads 12/10 but then my oncotype came back at 22.
I am glad this protocol is still around, he says se's will be minimal.
I'll admit my decision is not 100 percent, I still have some doubts and fears, but I trust this onc's judgement.
I am so happy this thread is here, it has helped me to identify questions to ask at my appointment.
I spoke with one sister who had her cmf in weekly doses, was this the case for anyone else?
How severe and lasting has your chemo brain been, or have you had it at all?
How much weight did you gain?
Anyhow your courage and spirit gives me reason to feel hopeful!
Have a great day everyone.
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HI Cookiegal.....The decision-making process is so hard. I'll try to answer a few of your questions.
First of all, I did 6 infusions of CMF....3 weeks apart. It's not a hard treatment. You sit in a recliner, they insert the IV and you sit there while the chemicals drip in. They also push some of the chemicals into the IV line. There is no pain involved once the IV is in place. It takes abaout 2 1/2 hours and then you get up and go home. The whole regiment is very doable. You may have a couple days out of the three weeks that you feel "off" a little but the drastic side effects usually don't hit too many of us on CMF.....and of course, your hair thins but you don't lose it all. I never had any need at all for a wig.
Chemobrain does affect some of us. I had some chemobrain. I found it the hardest to multi-task but most of that has disappeared. Three years ago tomorrow was my diagnosis date and time has erased many of the side effects for me. When I do something stupid now, I still laugh and use the excuse of chemobrain! LOL
Let us know what you decide to do. We will be here to help you through if you decide to go with the CMF. This is an awesome group of ladies on this thread! Just ask anything you want to know and somebody will be able to help.
Hugs to you........
Rita
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Thanks Rita for your good answers.
The chemo brain is my biggest concern.
Although I lost my job a few months ago, for the past ten years I have worked in broadcast journalism, and at times it requires a lot of multi tasking and quick thinking, as well as concentration in a chaotic setting.
In a way I wish I was a little higher on the oncotype scale, from the role call it appears most 22's did not have chemo, but I had one 4mm positive node.
Oh well, I'll keep hashing it over!
cheers!
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Hi Cookiegal, I think Rita answered most of your questions and I really don't have a lot to add. I'm on CMF now and have only had one treatment so far with my 2nd scheduled for this coming Wednesday. It is very doable and I did have some nausea but they are going to adjust my med's and try a different kind this time around so I feel confident that things will go smoother.
As of today, I have had no hair loss and I'm continuing to hope for the best......so far so good
! I've had no chemo brain so far but sometimes I wonder if I'd even know! LOL Anyway, I've had so major side effects from the 1st round and I actually feel great. My blood work was even great last week so like Rita said, this is definitely doable.
Good luck with your decision. By the way, my Oncotype was a 19. Did you mean that you had a positive lymph node? I had an inter-mammary node and also my age, which factored into my decision.....the hard part was finally making a decision. I will tell you that for myself, I'm thankful that I've decided to do CMF but it really is a personal decision and you'll make the best decision for you. I'm happy to answer any questions I can but this is a great group of ladies and they was definitely helpful to me.
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Cabmom - happy to hear that the first CMF went well.
Susie - I chose not to do the steroid (I don't like how I feel on them) and they game me zofran for nausea at infusion, with compazine at home. Overall, I didn't seem to need it but took it anyway for fear of needing it (does that make sense?).
Cookie - I do not have chemo brain, at least I don't notice it if I do! I checked the oncotype list that Samiam was so generously administering and some of those 22's did have chemo, they just did not report back to the thread. You could always PM some of them.
As cabmom mentioned, age does factor in, and my age of 44 did. It is a big decision, and I know what you mean about the score - no fun to be in the gray zone where there is not a clear direction. It is a personal decision - once you figure out which way to go it is a relief. These women are so great - you will get wonderful support here (either way!) .
Everyone have a wonderful Thanksgiving!
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Hi All, Have not been on this board for a while, but I'm following it religiously.
Susie and Cookiegal - I think you'll find that CMF is very doable, and like cabmom said, making the decision is harder than the treatment. The only problem is that it lasts do long. I'm having 8 treatments 3 weeks apart, and started on July 1st. Next week is my last one!!! Can't wait. The funny thing is that today I checked on the the other thread I was on, for women starting chemo in July. I was the only one there that chose CMF - so it seems to me, and I noticed that everyone there is already done with the chemo, and some are even done with the radiation, only I am still doing the chemo. On the other hand, all of them were complaining about all kinds of pains and SE's, while I am feeling very good! My biggest thing is that most of my hair fell out, and I'm wearing a wig, but most CMF takers keep their hair.
About the steroids. They are given to prevent nausea but cause sleeplessness, as I've read here. I have not been given any (because of high blood sugar), and I was fine throughout. So I think that you all can ask to skip it.Hope that everyone is doing well. Happy Thanksgiving day!
Elisheva.
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Has anyone done "dose-dense" CMF? If so, can you share your experience with me?
Thanks so much!
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Susie - honestly, I am not sure what "dose-dense" really means, but I think it means infusions close together? I had weekly CMF so 24 infusions. It seems like most women have 12 (every 2 weeks) or 8 (every 3 weeks). The hospital I went to does CMF weekly. Other hospitals in the same city use the other schedule, but all of them do CMF for 6 months.
Feel free to PM me if you are talking about weekly and have questions!
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Susan: I sent you a PM. Sorry it took me so long, I had not been on in a while.
Colleen
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Susan: I sent you a PM. Sorry it took me so long, I had not been on in a while.
Colleen
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