CMF Question
Comments
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I agree - I would wait. I thought I would want bland foods, milder things and came out of chemo craving hot and spicy foods during my treatments. Go figure.
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Hi Lee!
Good luck on Monday. Everyone is different and I liked having a bunch of stuff I'd possibly need around me "just in case." My hubby travels alot so I could not be sure that I'd have someone to help me by shopping if I needed something.
I had two important tips before I began---one was to get some stool softeners and to take them the day I started with steroids. I used colace plus I ate my daily prunes (which I like so that was not a problem). The other was to have some flavored sodas--ginger ale, lemon soda, in case water did not agree since you want to drink alot after the chemo. So I'd suggest that you at least get that lined up.
Take care. You will be so glad once the first chemo is over and you see that you are doing fine.
Hugs
Mandy
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Lee, Mandy is right - those things you want in advance
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Lee, I hope everything went well today. You have been in my thoughts. I couldn't really add anything to what the other ladies had already told you but I did want to let you know that you are being thought about and all of us will be here every step of the way. This is a great thread with tons of wonderful ladies
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Lee, hope you are doing well today.
Hugs
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Thinking about you, Lee, and hoping the first chemo was uneventful and that you're home doing well. Let us know how it went when you get the chance!
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I really appreciate everyone's support here. I'm still trying to come to terms with my dx and what I should be doing. I don't know how else to say it except I bailed out on my first tx Monday. I went there, had my blood work (they had trouble accessing the port which made me feel ill), and then I met with the onc. I guess in the end I had too many questions and needed too much reassurance to go ahead with it. Too many things happened, or didn't happen that made me feel uncomfortable going forward at this facility. Maybe I'm expecting too much, I don't know. The Med onc was not happy with me and said if I wasn't going to do anything else he wasn't going to follow me. I told him I knew I had to at least do radiation because of the lumpectomy and I would take the AI. I left the office with a script for Arimidex, which I have started and an appt to see their Radiation Onc.
The other thing I did, which I really should have done much earlier, was get an appt at the main cancer center to have them look at everything and let them do my treatment. That appt is at the end of this month and records etc are on thier way. Putting tx off for another opinion, which may very well be exactly the same opinion...may mean I'm screwing up my chances down the road. I don't know. Hopefully not.
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lee-Okay, breeeeeathe! If you were not completely comfortable with your chemo decision or the facility and doctor administering it, you were right to "bail". If this Onc doesn't understand your need to have more time, he probably isn't the right Onc to follow you. I would get a second opinion, even if it is just to confirm your decision. In my case, only after I had made many, many decisions way too quickly, was I told that I should take time with these life-changing decisions. Most cancer grows slowly, so there is no harm taking more time to decide things. I was in surgery less than two weeks after finding my lump. As my cancer was not picked up on mammo, I am now worried about my "good" breast. I wonder if I might have chosen a MX if I had more time to think things through. Good luck with these tough decisions Lee. Let us know if we can help.
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Lee,
Designer mom is right. This is not the onc for you. Get the second opinion at the main cancer center and if you don't like that doctor, get a third opionion. When you find that onc, you will be able to make the right treatment decision for you. And arimidex is treatment--so don't worry. You are in treatment right now.
Hugs
Mandy
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Lee, sometimes your gut reaction is telling you something and you should
not have felt pressured to do what you instinctively knew was not for you.
So, take a step back and regroup...time for another place to get another
option to consider..and take a deep breathe...hugs,
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Lee,
I got 4 opinions over the course of 6 weeks - and many here already know that I got a "you must do chemo", "you shouldn't do chemo" and two "you could if you want insurance - it's 50/50". I made a decision to do chemo and still felt rushed. I did half the chemo and had continued to research, ask questions, self-evaluate and even talk with two rad-onc groups. I made a decision to stop chemo based on the risk/benefit ratio for me with my exact stats, age, life and comfort level. It is a decision I believe most would not make and yet since I have made it, I have been told more clearly by my med onc and both partners at rad onc practice that I made a very reasonable choice. I feel comfortable with my decision and that is what you need - to feel comfortable with your decision and your caregivers, no matter what you decide, it must feel as right as this possibly can.
I know we are all different, bu I just wanted to tell you my story so that you know that many of us don't know what the hell we want to do, at least not right away
Best wishes to you....
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Lee, it really was a SMART thing to do. I had a different situation because I was diagnosed in one state (because I was there for the summer) had 2 surgeries and met with a medical treatment team there and then had to come back to our main home and state for the school year and had to find a whole new medical team here. Loved everyone one the 1st team and wished I was having treatments there but then knew I had to come back for my family. Once back and I started going to appointments, I quickly realized that all oncs are DIFFERENT and some are just MEAN. Many lack the bedside manner that patients deserve and because the onc that I was using didn't appreciate me asking questions.....well, he basically kicked myself and my husband out of his office. He said that I shouldn't question his knowledge and said he would give me a referral to someone in his office.........I said NO WAY. Called my surgeon (the one I used for #3 surgery), told her what happened and ask what to do. She made 3 more recommendations......end of story.....I found an oncologist that I loved! He showed me in black and white what the different options were and cared how I felt about the decision that I MADE. He explained the risks associated with each different treatment option and even though I was still scared to death to make the decision to do chemo, I know it was the RIGHT decision for me. I wanted that extra insurance because I have a small child and also because I felt that CMF would not be as bad on my organs. I realize that some ladies don't have that option because each of us are different and have different variables but I feel I was lucky. After the 1st treatment, it wasn't quite so bad. It was the unknown that terrified me. It is doable but YOU WILL KNOW when you're ready. Talk to other oncs, get more opinions and then make YOUR decision. It's YOUR BODY......you'll make the right decision for you!!! Good luck....HUGS!
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As usual, the gals here are giving you good advice. You are the only one that has to be pleased with your decision. We all think differently and our bodies all react differently to the drugs. Take your time and arrive at a decision that you think is the best for you. Then move onward, without looking back, and enjoy your life. The decision-making process was the hardest part of the journey for me. Hugs to you as you struggle to decide what is best for YOU.
Rita
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Everyone, thank you so much. It really helps to hear your experiences and it gives me strength. I know I need more time to think and to breathe (really, I'm trying!) before I can start any tx. I've felt a horrible mix of emotions after cancelling Monday. Worst was feeling they are not going to want to treat me since I'm not going along with their program at this point. I really liked the onc, but there were just too many other things going on there I wasn't comfortable with and that part scared me.
Tonight I am finally feeling better. I think I'm in a better frame of mind. I have my appt set and all my records & films ready to take to the main cancer center.
I do know if I go forward with chemo, I will still want it to be CMF because I believe it is as effective and has the safest profile for me in the long run. I am hoping my experience with this center will be better overall so I'm not as nervous making decisions and moving forward. Wish me luck!
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lee- We'll be right here if you need anything. I hope the new cancer center gives you the reassurance that you need and deserve.
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Lee, please let us know how it goes with the new cancer center visit. You will continue to be in our thoughts as you sort through all this! Hugs!
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Lee, I agree with the other ladies. We will all be here waiting to hear what you've decided and whatever that decision might be just know that all of us will be praying for nothing but the best for you
! Good luck and let us know how it goes.....0 -
I begin my CMF therapy next Wednesday and hope I don't have the nausea effect. Mine will be all IV every 3 weeks for 8 treatments in 6 months. Will certainly ask for more nausea pills if I need them. What is atavan? I might need something to help me sleep too.
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Lee, I'm new to the group, but don't think you should stress over a slight delay in your treatment decision. Don't believe it will affect the outcome. God bless and keep the faith!
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golfergrandma - I can't tell you that you won't have some nausea, I think most people do but it's the meds that you take that will help with that. My first round, I had less nausea than in future rounds. You will want to have those nausea pills around.
Atavan is a delightful anti-anxiety drug that causes you to feel calm and a little sleepy. I have had it for MRI's and the night before surgery and loved it. I don't know how often it can be taken. I sometimes take Ambien and have been happy to have it.
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golfer- Welcome! Glad you found this thread. If you feel like it, browse through some of the many pages and you will learn a lot. The thing I wish people had told me before I started was how very, very important it is to be proactive about constipation. The anti nausea meds work beautifully (I never suffered from nausea once), but bang howdie do they make you constipated! Before your infusions, really focus on high fiber foods and hydrate by drinking lots of water. Ask your Onc what you can take in case of constipation. If you go in well-primed, things shouldn't get out of hand. After my first infusion, I couldn't get things going for 4 days....not fun. Let us know how things go.
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Hi My CMF Friends, I was traveling, camping, goofing off, but now I'm back home and have been reading posts I missed.
So much good advice for people starting or thinking of starting CMF. I don't have a lot more to add. I just finished 6 cycles of CMF in December (the IV push and cytoxan pill version that SoCalLisa had). I'm feeling much back to normal again and have been on tamoxifen for going on 4 weeks. This is a really doable treatment - IMHO - I got 3 oncology opinions before I decided on CMF. All the doctors were helpful in getting me info I needed to decide. I cried my eyes out when I realized I would be opting for chemo. I was able to get through this and keep to my regular schedule, including jogging 2 to 3 miles a day, but I did have to take some naps. Wishing you all the best and DesignerMom, that is a beautiful pic and gorgeous smile. Love and hugs to you all, ~Beans
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Beanius! So good to hear from you. Glad it is all continuing to go so well, including Tamoxifen. Keep roaring along!
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Hi everyone,
Here's the update on my appts with the new oncs. I saw the radiation onc first and was very impressed. She did however want me to see one of the med oncs about still doing chemo first. It's the positive node that keeps trumping the OncoType score since its was a gray area 20 score.
This med onc's preference again is the "gold standard" dose dense AC followed by Taxol. Second choice, if I don't want the A, she would do TC x4 (Cytoxan and Taxotere). She says she wouldn't use CMF. They also told me to stop the Arimidex because my blood work says I'm not really post menopause yet. That has me wondering why the other onc went ahead and prescribed it rather than the Tamoxifen. (Somebody has the wrong #'s !) I'm scheduled for a bone scan and a CT scan this coming week and then I see the onc again after that to go over the results and I guess schedule chemo.
I'm really back in same place of trying to decide what to do. I can't see myself going back to the other center because too many things there made me feel uncomfortable. This center is #19 in the country for cancer and they certainly have the latest of everything available there so the quality of care is very good. I'm just dissapointed that this onc won't consider CMF. (Cabmom, I wouldn't say this onc is mean but she sure didn't smile much.)
So that's where I'm at again. Still stressing about chemo choices and knowing I have to make a definate decision soon. Four months already since I found out about the lump and I don't know where the time went. I really just want to get this whole thing behind me and on to a healthier me.
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I do think you have some issues with how you are being treated, lee.
It sounds like people are just not paying attention and being careful.
I hope you find a place where you are treated well and professionally.
Nothing worse than sloppy work
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Hi Lee!
I agree with Lisa---there still seem to be some issues in how you are being treated. I was at a top cancer center and they made so many mistakes in my pathology that it had to be redone several times....my overall report is 22 pages long due to the multiple "addenda". I was the one who caught the mistakes---when I consulted at another cancer center they came to different conclusions on looking at my slides and suggested some problems with the original report......I went through it with a fine tooth comb after that and caught more mistakes (I had a friend who was a rads onc so I would call and ask questions). .....so just because a cancer center is number one or five or twenty does not mean it is right,
You have a right to an oncologist you can talk to and who listens to your concerns. Try not to be intimidated by the name of the cancer center ....Like Lisa, I hope you find a place where you are treated well and professionally.
Hugs
Mandy
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lee- Like the other ladies said, if you are not completely comfortable, go get yet another 3rd opinion. I would also ask this new Onc why she would not consider CMF. I know Sloan Kettering and Dana Farber still use it. If it is not the best choice for your particular cancer, then you deserve a thorough explanation why a differenct chemo is better. As far as your first Onc, I would not go back there if she prescribed Arimidex and you are not menopausal. That is definitely contraindicated. My Onc would not consider Arimidex until I was 2 years with no period. Keep asking questions until you are satisfied. This is your body and your health. Good luck.
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DesignerMom: I was treated at Sloan and while yes, I did have CMF, it was certainly not the first choice. In my case, it was supplemental to AC treatment. First choice for me would have been AC-T or TC. I was given AC-CMF becuase of my prior medical history. With node-positive cancer, it's highly unlikely that any onc at Sloan would recommend CMF alone. There may be cases such as mine where my neurological system was already compromised or someone with other medical conditions which would make it difficult for them to tolerate chemo or with an elderly patient, where CMF might be offered, but other than that it would not be the first choice.
Lee, a score of 20 on the Oncotype is in the intermediate area but hard to interpret (just as mine was) since you are node-positive. There really isn't enough data comparing success rates of chemo in node-positive women. My onc wouldn't even consider me forgoing chemo. My score was 18 and at least it gave me some comfort that the cancer wasn't as agressive as I thought but I really felt I needed to do chemo and rads to prevent the beast coming back.
Sure chemo is unpleasant with lots of difficult SEs, but if you don't do it and you have a recurrence, then it would be a lot more unpleasant. If you still feel uncomfortable with the latest opinion, you should seek out another one. Since you already pulled all your records together for the last consult, it should be fairly easy to get them over to another onc. I think most doctors are fine with knowing that patients are seeking a second opinion. If you do go, wait to hear the recommendation first before telling that onc about the other two opinions. How did you feel about the med onc you just saw? Apart from the fact that she was not recommending the treatment that you wanted, were you comfortable with her? did you trust her expertise? Did you ask her what patients she would recommend CMF to?
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Hi lee - wow, sounds like such a confusing time for you. I also went through a lot trying to decide and I went to multiple doctors and asked a zillion questions and researched articles online. With each opinion, and piece of information, my decisions became easier and more clear. I highly recommend more opinions until you feel comfortable with the treatment plan. Keep on doing what you're doing, ask questions, get opinions, ask more questions and cross examine it all before you decide. I found that once I was set on a plan everything became much easier. I wish you all the best!!
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I don't think it is typical to have dose dense AC-T for someone with one positive lymph node as Lee7 is. There are lots of cocktails out there and different doctors use different chemos. However, the one thing I have found is that different areas of the country seem to treat differently. Alot of Seattle gals, even with multiple positive nodes, get CMF using the pills and other variations. The oncs with whom I consulted thought CMF was fine for me with my one positive node even though the institutions, with which they were affiliated, were using alot of CTx4 and ACx4. Two years ago, when I was doing chemo there was a gal on this list doing CMF at Sloane Kettering . I don't recall her stats so I can't tell you her node status. So Lee, ask the oncs why they are recommending a particular chemo for you with you one positive node. And ask specifically why they are not recommending CMF. All the best with your decision.
(((((hugs to all)))))
Mandy
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