CMF Question
Comments
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Cat123 - As I read, I feel like you haven't been given all that you need by your onc and wonder if you can seek another opinion from another onc?
By the way, I did four consults....probably 2 more than I needed but then I felt I knew enough as I picked up a little from each one.
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Cat 123 - Oh I am so sorry you are having to make all these decisions, it is so hard. I totally second raincitygirl about getting more opinions - I got 3 med onc opinions and also picked up info from each one to make my final decision and I've been very happy with my oncologist. I really recommend finding someone who will dig in with you and spend time helping you make the right choice for you. Everyone's situation is a little different...Wishing you all the best!!!
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Cat123 - I think you are in Ontario, does that make it difficult to get other opinions?
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Yes, I live in Toronto so second opinions can take awhile but i am now thinking that I should do just that. I really felt like the onc was just not working WITH me on the information I had gathered and just kept pushing her ACT. It's terrible when you feel like someone who should be in your corner is totally against what you are saying and feeling. I am very afraid of chemo (just like everyone) but the CMF seems less scary to me. Sometimes, these docs don't consider what is in your head and the stress of doing something you don't think is right for you will make you sick too. I see my GP this afternoon and maybe I can ask her for a referral.....maybe for peace of mind.
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Hi Cat123 - One of the treatments I discussed with the oncologist I have been so happy with is ACT. She only treats BC and she told me ACT is the gold standard for treatment. That may be why your onc is recommending it. I so agree to ask anyone you trust for help...I batted my decision around with so many people and here online. I wish I knew what to tell you. If my oncotype score had not been so low I would have gone for the ACT - So many women have gotten through it, that gave me courage. It seems so scary at first, but it's doable and it comes to an end. Like me, I have only 7 days left of 6 cycles of CMF! I can tell you how terrified I was to go in for the first treatment, totally trembling! They have good pre-meds these days that help reduce side effects. At least that's been my experience. I've had no nausea or vomiting and I've been doing this since July 6 of this year. I have to say my oncologist has prescribed pre-meds and all that have worked very well for me. My biggest complaint is chemo brain which is annoying, but I believe this is temporary. For the most part I've continued with my regular routine but I get a little more tired and go to bed early and take naps sometimes. I got three wigs and a number of hats lined up for in case I lost my hair. This was all surreal, as I recall, buying hats and getting wigs...but I just wanted to prepare for the worst as early as possible. I don't remember if anyone has mentioned the chemo list on BCO - I bought almost everything on the list to have on hand for just in case, and I've used many of the items. I just wish I could help take the fear away...it is soooooo scary...but those are your instincts talking to you so be sure to listen. More opinions will help guide your decision. Big hugs to you!!!
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Thanks Beanius....this whole thing is scary but this site helps so much.
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Hi Cat!
sorry that you are joining us here, but you have come to a good place. You might want to go to the ACT thread and see what the ladies there are saying. Everyone is different and everyone reacts differently to chemo.
That being said, I noticed that one of your reasons for wanting CMF is your hair. There is something called a Penguin Cold Cap (and of course you can read about it on bc.org) which will help you keep your hair even with the harsher chemos.
I had three opinions about chemo and did alot of reading. It helped me to feel comfortable with the decision to get CMF. So, I'd suggest that you might want to get more opinions and read alot. The other thing, I noticed that you are estrogen positive so using one of the hormonal treatments after chemo might be possible. Get a second (or third) opinion from an onc. I know that the Princess Margaret is highly regarded for cancer care in Toronto but if your onc is already from the Princess Margaret then go to another hospital. Most hospitals have protocols and alot of the doctors treat things in the same way.
I know this is a scary time, but you will not regret taking the time to get more information about what the best treatment options for you are.
((((((((((((hugs)))))))))))))))
Mandy
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Hi Cat: This is a tough decision for you to make. I think that with positive nodes and a Grade 2 or Grade 3 tumor, most oncologists would want to use more aggressive chemo. In my case, I had two positive nodes and I saw four oncologists. The advice from the first three was (1) TC (2) ACT (3) FEC. I would have gone ahead with (1) or (2) but was fearful of Taxol/Taxotere as I had an autoimmune disorder a year earlier which left me with some neuropathy and I was afraid it would flare up again. The fourth oncologist put me on AC x 4 and before I was finished with that she asked me to agree to follow up with CMF x 4. So I had the CMF as a supplement or extra insurance on top of AC.
As for the hair - losing it was the most traumatic part of treatment for me, as I'm sure it is for a lot of women. But I got over it and I'm glad now that I did go through four months of chemo and six weeks of rads. I feel I've done all I can do to prevent a recurrence. Being bald for a few months was a small price to pay if it works. I'm on Tamoxifen now as further insurance.
If you feel unhappy with the advice from your current oncologist, you should certainly seek another opinion.
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I agree! Second opinions often give us a more secure feeling about our decisions and, if nothing else, make us more informed. The decision-making part was the most emotional and difficult part of the journey for me.
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As I already said, you should get a second or even a third opinion. While everyone gets second surgical opinions, it almost seems as if we take the chemo opinon as a given. Yet chemo certainly is as important as the rest of the treatment, and different oncologists will have different opinions about the best treatment.
So, I definitely agree with Ritajean, MaryNY and anyone else who suggested a second opionion.
And Ritajean is right---making the decision is one of the hardest parts of the treatment. Once I made the decision to do CMF, it became easier.I had three oncologists and four suggestions--dose dense ACT (from one onc, but two said definitely not), AC X 4 (one onc suggested); CT X 4 (one onc suggested) and CMF X 8 (two oncs said this was a good idea). I did alot of reading and then went back and spoke to two of the oncs about my thoughts. And once I decided on CMF, I felt calmer and so far so good...this will be my third Christmas post my diagnosis.
Let us know how things go.
Mandy
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I just got back from my surgeon. My mammo and tests were all good and for the first time since diagnosis, I don't have to return for a year. I've always had 6 month follow-ups! WAHOO! Now I'm really ready to get geared up for the holidays. I hope everyone is doing well today!
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My goodness Ritajean, that is the best news ever!!!! Now you can really enjoy your holidays with the blessing of good health. And a big WAHOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!
Hugs
Mandy
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ritajean - what a nice holiday present!!! Congratulations to you!!!
Hope you all have a great weekend!!!
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Ritajean- I can feel your joy all the way here in NYC! What a celebration! So much ro be grateful for!
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Ritajean- That is the best holiday news you could get! Congratulations! I know you are grateful but also it makes me grateful and hopeful for the future.
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Ritajean......fantastic news! Your holidays will certainly be wonderful this year!
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Rita.....so so so happy for you. That is the best news ever.....time to enjoy the holidays!
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Hi my CMF friends...the day has come and I have finished 6 cycles of CMF!!!! Yahoo!!! Took my last C pill today. Started in July '10 and got a total of 12 infusions (10 of MF and 2 of F) and took C pills 14 days on and 14 days off. I'm done and it was doable. I have 16 rads left then onto Tamoxifen. I lost some hair but it's not noticeable on my head. It was hardest on my eyebrows and pubes...no big deal, lost about 2/3...I just draw in the brows when I go out and who cares about pubes???
I want to say how much I appreciate all the help and support and caring you have given me here to get through this. It was so scary to start and half-way through was emotionally tough. This past week has been emotionally harder too, but today with having taken the last pill I feel very good!
From the bottom of my heart to my CMF Breast Friends - THANK YOU!!!!
Beanius
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Beans - you should be ever so proud! and relieved and happy and DONE! YAY!
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Beanius......awesome news! Congratulations to you girl....the last 16 rad's will soon be a distant memory too. Happy for you. I agree with you completely.....I couldn't have made it through my treatments either without this thread....what a blessing this forum truly is
! Doing the happy dance for you !0 -
YEA BEANIUS! I'm doin' the no mo' chemo dance for you! I told you that you could do it! Now it's DONE! The last rads will go quickly and soon you'll be tackling the task of getting back to your life.....and gal, LIFE IS GOOD! Please come back to the threads and let us know how it's going for you and give us updates. You've got lots of friends here!
Rita
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Cheers Beanius! Your chemo is done! So happy for you!
Mandy
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Thanks so much for the cheers...I feel so free today...what a hurdle! Thanks again!!!! I am so grateful for all of you here! Have a great rest o' da week!
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Beans...you're done...great news! I think I'm going with dd ACT but I am still worried about it. At least CMF is tried and true for many years!
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Cat123 - thank you for the congrats! It is great to be done. I got 3 different oncology opinions before I started. There are many reasons I went with CMF: *my mom had it back in the late 70's and never had a bc recurrence, * I had a low oncotype dx score of 6, *even with 2/21 + nodes - my med oncologist who only treats BC was comfortable with CMF + rads + Tamoxifen, etc.. I have a fairly low risk of recurrence. I also discussed ACT which I was told is "the gold standard" and TC. I believe I would have gone with the ACT if my oncotype dx score had been higher and I would have followed my med oncologist advice. I found someone I really trusted. Anyway, lots to think about. Chemo is doable and it does come to an end! I wish you all the very best!!!
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Congrats Beanius...so nice to have it over with isn't it..oops I guess that is an understatement for sure
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LOL SoCalLisa - yes, an understatement! Soooooo nicee to have it over! Thanks for the congrats!!!
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Hi Beanius and CMF gals,
Congrats on finishing treatment! I'm brand new here and prettty sure I will be doing IV (not the pills) CMFx6 as soon as my port heals up. The onc had originally said AC, T but I was too scared of the A and its heart risks. My onc score finally came back 20, the grey area he said.... and I have 2 pos nodes. He seemed ok with me doing CMF but I am wondering what the real difference might be for recommending ACT or TC. I've only been to the one onc but he's affliated with a huge cancer center.
Cat123, Have you come to any decisions about what chemo you will do? What type CMF did they say? Do most do the pills for the Cytoxan?
Any help from you all will be appreciated. I feel like I've rushed to make a lot of decisions that maybe I shouldn't have and I'm really second guessing myself now on chemo.
Thanks!
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lee7: My onc score was in the grey area too, but with two positive nodes the onc who I finally settled on said I definitely should do chemo. And that meant either AC or TC. Because I have a history of neuropathy, I wanted to avoid Taxol, so that that left me with AC. I had four rounds of dose-dense AC. Then I had four rounds of dose-dense CMF.
I would really advise you to get a second opinion. I actually saw four oncologists before making a decision.
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Thank you MaryNY,
It sounds like it takes the stronger A or T to handle the positive nodes. I know the dd AC means every 2 weeks, is it also every 2 weeks with the CMF you had? Did you need the neulasta shots to keep your counts up? That part concerns me also.
I am going to try to get a second onc opinion. Time is just going too quickly.
Thank you for your help.
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