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CMF Question
Comments
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Susan...thanks so much for your encouragement. I've often wondered if I'd ever get to the point where I wasn't obsessed with bc and its effects. You're an inspiration for those of us who are still tackling this CMF journey and proof that it is worth the trip. Are you having any side effects from the Arimidex?
Rita0 -
Rita, I started Arimidex the day I started radiation, Nov. 13th. After almost 4 months on it I can honestly say I am tolerating it pretty well. I always had bursitis in my hips before all this and they may be a bit stiffer but that is all. I am very active and run everyday so that helps. I am also taking Fosamax as I was osteopenia and want to protect against osteoporosis. I was quite fearful of starting the Arimidex but if it does not get any worse then this then I will stay on it. I feel fortunate that the option is there to cut the risk of recurrence. I think back to june when I was diagnosed with Stage IIa, BC and it's hard to believe that I went through the lumpectomies and 8 chemos and the radiation. Time did go fairly quick and I was pretty emotional during that time and very obsessed with what I was dealing with. That will end! The fear still remains somewhat but not like before. I wish you all well and please keep in mind that it is temporary and side effects do go away and your mind goes back to a more relaxed state.Susan
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Thanks again Holly for all the helpful info. I will be asking my doc about dif meds. Hope your doc is helping you to resolve, what sounds like an allergic reaction, and the fun rhoids. You are almost there though girl, lots of hugs.
Carole, sorry you are having a rough time with infections. You sound strong and you know there is support here. All the best.
Rita, you are amazing!
Susan, thanks for your continued support. It is hard to believe this will end, hearing from you does help
I am so thankful to be on my "chemo holiday" now. Enjoying food once again. I am a real "foodie" and my tummy is smiling again
Anyone know how to get these darn photos to work here?
Hugs,
Ginny0 -
Ginny,
I am a member of the Computers for Dummies class. My son helped me get my picture on here when he was home for Christmas. If you can't find anybody to help you this week, I will email him and see if he can help if you email him your picture. We will get it done....one way or the other!
Glad you are feeling better.
Rita0 -
Thanks all for your encouraging words. The reason I was asking about dose dense was I saw it as a way to get treatment over faster. I will ask my oncologist when I see her, but will go with whatever she feels is best. I have a lot of confidence in her. My antibiotic IV therapy is going real well. DH is doing a great job & he is happy to do it as he feels like he is really helping me. He has been very, supportive.
It was really great last night tossing around in bed without the drain pouch. Yipee.
Hope everyone has a great weekend. Weather here is windy, but warm.0 -
Thanks Holly and Rita for trying to help me with my pic. Maybe emailing your son Rita would be easier? Thank you so much for the offer. I will send you a pm with my address.
Thanks0 -
Ginny did you try going to My Home above then to 'Main configuration'....edit 'personal information'....go to bottom of page to avatar button...click on upload your avatar....click on browse and you will then need to locate where you saved your 80x80(or smaller) image , open image and submit. Your image has to be in certain formats and within certain sizes. Good luck~!
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Holly, I did try this. I think my image may have been larger and I don't know how to make it smaller. Anyway thankyou for helping. Hope all is well.
I am getting very frustrated with my chemo care at my hospital. I usually wait 3 hours just to get in and while there...again so slow and feel like I am in a heard of cattle. They keep changing my doctor (my next appt they were going to set me up with a lung cancer spec to discuss changing my regime? After having such a rough 2 weeks, I feel like they have abandoned me. Sorry for the rant. My hospital is supposed to be one of the leading cancer hospitals. I guess too many people, not enough nurses, doctors.. Has anyone switched hospitals in the middle of chemo? Also are the doctors not supposed to check your scar, breathing...in your appt? Mine just sat down for a few minutes, answered my questions hurriedly and was gone. Should I be expecting something more?
Sorry folks, I am very hormonal today, sniff, sniff.
Hope all are well.
Ginny0 -
Oh Ginny, I feel for you. My onc sees me every other time(unless my counts are off then he sees me each time--when he's not on vacation, that is!) and does check my breathing, lymph nodes, etc. It's a hurried exam but he does discuss any concerns. My wait varies from 1-3 hours. Not enough nurses here too but you it seems that you should be getting more consistent care--same doctor at least...
pictures---If you need to resize try using a program like Irfanview. It's a free safe download that I've been using for years.
I spent last night and today breaking out in hives all over my body and face so i stopped taking my cytoxan pills. My onc is away until Thursday and no one else seems to be very involved in my care when he's away so I feel safer stopping the meds. Obviously something is going wrong here. after my throat episode last time, I'm pretty freaked out and don't want to take chances. I called my pharmacy and they said I can take benedryl to stop the itching.
Also....last night, I became so bloated--as if I was 8 months pregnant. It was incredibly uncomfortable. I spent the night in tears. This morning it was much better. Has this happened to anyone here??? I've been bloating somewhat all along but this was nuts
Hugs to you all0 -
OMG Holly, I'm glad you got off those *&#* pills! Hives are horrible. I have had them (prior to chemo) and the only thing that could stop them was prednisone. I hope your benedryl is working. An oatmeal (aveno) bath is soothing.
Boy I don't know if this chemo regime is worth it? The risks of it seem worse than the benefits? What about trying the IV form Holly? My chemo nurse said to me today that the doctor might advise me to stop because my body does not seem to be handling it well. Boy it doesn't seem like yours is either! I finally got an appt with a breast onc (mine is on holidays) and will discuss what is the best thing to do. I think trying the IV form is worth a shot. I hope you will think about it too. Glyn, who has finished chemo, has told me that she changed to IV midway through and it was more tolerable. If the benefit is only slight, think of the risks you are enduring. The toxicity on our bodies can have long term effects. Not trying to scare, just fleshing out all of this.0 -
Ooops wasn't finished my post. I was in the grey area (my tumors were less than 1cm, although they were er-,pr- and grade3. Still no lymph nodes... When my nurse said the dr. may strongly suggest I stop, she meant chemo altogether. Boy this is frustrating. I think the IV CMF is worth a try at least. I hope you will think about it too Holly. I am worried about you. Hope you can connect with your doctor soon and get some kind of relief.
Thanks for your suggestions. I will make sure this next doctor checks me physically too and will demand some clear answers. Hang in there. Hope you are getting some relief from the itching. God Bless!
Ginny0 -
Ginny, I emailed you about your picture. If you don't get it, let me know. We're going to get you up and going!!!!
Rita0 -
Ginny and Holly.....I do the CMF by IV and have had relatively few problems. It's worth checking into! It is doable!!!!
Also, I did the Look Good, Feel Better Class tonight. I couldn't believe the bag of makeup products that they gave us. I felt so good when I left there that I stopped and treated myself to a peppermint latte on the way home. If any of you haven't done this, check it out! It was fun!!
Rita0 -
Good for you Rita, I hope things are starting to settle down for you
Holly The bynadril should help with the hives but are deffinately having an allergic reaction to something! The Onc office shouyld have an all call Onc to help you out at the very lewast it sounds like you should go to the ER. Hope it clears up quickly and they figure out what it causong all this.
Ginney, I had a change of once at the end of chemo and the new Onc is now on Maternity leave. but is suppose to be back when I see her again. I hope they get one person who can help you and stick with you.
Thinking of you all
Hugs & Prayers0 -
Goodmorning ladies,
Holly I hope you got some medical attention. Please let us know how you are doing. (((hugs)))
Rita, isn't the Look Good Feel Good program fun! The make- up is amazing, and I must say it is really helping me look and feel better every time I use it. A gal has to look her best
It's wonderful to have perks like this
Thank you, I will be emailing your son. Very nice of both of you to help me with thisl
I'm glad infusions are doable for you Rita. I think I will be giving it a try next week. I like the fact that you actually have a couple of weeks for your body to repair and also feel better.
There are some tough decisions we have to make and by the grace of God, we make the right ones. I guess we do what we can and leave the rest up to the big guy. I am just going to try enjoy the rest of my chemo holiday and trust that I will get a good, attentive doctor who will offer some intelligent guidance on what to do next.
Cy, thanks, I hope I get one to stick with too. These teaching hospitals have their cons as well as there pros.
The sun is out, everyone have a good day.
Ginny0 -
The benedryl seems to be working, along with drinking a lot of liquids--itching is far less and no new areas of hives today. I'm just anxious now to talk to my onc and hope he calls me on Thursday! I sure hope they figure out how to handle this so I am safe to continue my treatments!
Rita--I'm so glad you enjoyed the look good feel better program--I too love my bag of goodies. They even showed me a new better way to do my eyes--makes them look much better!
HUgs to all0 -
Holly...so glad the benedryl is helping. I'll keep my fingers crossed for you that you can continue without any interruptions in your schedule. You are certainly due for some luck, gal!
Ginny...be sure to email my son. His name is Barry. He'll get you all set up. He's my pride an joy. He's a plant manager of a major manufacturing company and has been super to help me through the surgeries. He even took time off to come to Illinois to take me to my first chemo.
It's amazing how our kids come through for us when we really need them.
The sun is shining here, too and I love it! I'm ready for spring and sunshine.
Take care everyone.
Rita0 -
Thank you Rita and thanks to your kind son.
I'm having a difficult time because I have to make another difficult decision. Do I switch to the other CMF. I guess I was doing the "Classic CMF" which is dose dense. I'm afraid of switching with my er-,pr-, grade 3 little tumours I had. Is there anyone reading this who has done the IV with similar prognosis and passed the 2 year mark? I know I was blessed to have clear nodes and small tumours, but the double negative and tumour grade are really scaring me now. I have been pretty positive and upbeat until that 2 weeks from hell. I hope someone can offer some info.
Appreciate any kind information.
Blessings,
Ginny (sniff, sniff)0 -
Ginny, NS was a triple neg that did the CMF 5 years ago. She just had a new primary but it is er/pr+ this time so she beat the triple neg.
Hang in there!0 -
Ginny,
My oncologist assured me that 6 CMF IV transfusions are equal to 4 AC treatments. I had a tumor that was also grade 3...and er- but pr + so I am only a slight step up on the ladder er/pr ladder from you. He did not hesitate with this regiment for me. Although none of us know what will happen to us in the future, I thought it might ease your concern a bit about the IV treatments if you know that someone with a very similar diagnosis was taking that type of treatment. It's a tough decision that's before you. Once you make the decision, you will feel better about the treatments, regardless of how you decide. Remember how overwhelming everything seemed at first when we were waiting to make decisions and get test results?
I bet you'll do just fine regardless of what you decide! Hang in there.
Rita0 -
Cy, that's encouraging re: beating the triple negative with CMF---thank you. A new primary, that must be pretty rare, eh? So much is out of our control. I'm just learning to accept this better and be grateful for each day. A lady was just killed 2 days ago, just close to my home. She was trying to help someone in an accident and due to the white out conditions, was hit by a car and killed. That really sobered me up. Sometimes this whole bc thing can take you to dark places and you get stuck there. Life is precious and fragile. I'm thankful for today and trusting God will guide me to make the right choices.
Thanks again Rita! That gave me great relief re: CMF infusions! You're so right, the decisions have been overwhelming, but there is relief. I'm looking forward to getting a second opinion on Monday and am preparing myself to give the infusions a shot.
I do appreciate your support ladies.
Anyone else know of someone who beat the er-/pr- with CMF infusions?
Holly, I'm so glad your hives are under control. Hope you get some really good help today from your doctor!
Blessings everyone,
Ginny0 -
Holly, did you hear fromt he Doc today? hope the hives are gone now
Ginny, I am a triple neg too so am anxiously waiting for the 5 year mark. But as you said we need to remember to live each and every moment of every day to the fullest cause anything can cut you short on you days here on earth. BC is only one small factor in the whole sceme of thing. We have more chances to lose the battle with heart desease than we do BC.
So live it up ladies I plan to have a blast every day!0 -
I am confused. My oncologist told me that I was triple negative, but she didn't make it sound like it was a real bad thing.
I am suppose to start my CMF (IV) treatments on 3/20/07. Should I be concerned that CMF is not strong enough for triple negative folks?
I was happy that I had no node involvement and would not have to do radiation. Should I be asking more questions?? I am going to take a few days off and not worry about bc. We are going to be out of town on partial business/pleasure trip until next Wed. Then I have to go to 2 different doctors on Thur and Fri & then start chemo on Tuesday.
Hope everyone has a great weekend. We are suppose to have outstanding weather here in s/cal. Don't forget daylight savings time starts this weekend.
Carole0 -
With triple neg once you've had surgery, done chemo and rads there is nothing wlse they can do. the girls that are er+ can get more treatment because they can do something to block the estrogen. CMF is a goodf treatment and if your Onc is recommending it then it should be OK.
Enjoy your time away Carole. And like some one once told me once you do the AC you can't do it again so CMF is a good treatment there's a lot of good from this treatment.0 -
Hi ladies,
Carole hope these rants have not scared you. Our negative status means we definitely should do something now, early, as preventative. Good news is that negative status reacts better to chemo. I guess that is good and bad. But you will be giving it your best shot, early, with CMF and rads. CMF is just as effective as the shorter course of AC (which is harder on your heart). Listen to me... , I have had a rough time with the pills, doesn't mean you will, and I am talking out loud and confirming myself to continue with the IV form. It is our best shot. My aunt, who was stage3, 26 years ago did this and she had 26 yearsfree! She did get a new primary e+, but that was after 26years and after her surgery, she just went on tamoxifen and is doing well. She is 76 and when I talked with her yesterday, she said she had just come in from a nice cross country ski on her lake!
Have a great vacation and try to forget about all this.
CY, we will make it through this, we are giving it the full guns, now early. I hear a low fat diet and exercise are also helpful for negative status.
Rita, your son was so helpful, thank you. Don't know about this picture, I kinda look a little strange, might bug his for another one. Miss high maintenance momma here
Blessings to all.
PS> Holly how did it go with your doctor?0 -
Hi Ginny--
Good to SEE you!
I'm pretty frustrated--my onc did come back from vacation yesterday and I called to tell them about stopping the pills and taking benedryl. His nurse called me and was pretty annoyed that I had called again. She said she already had it marked down to tell him about the throat incident and I had to explain to this woman why I thought it was important to tell him about the hives in ADDITION to the throat! She is probably overworked but she has no right to make me feel uncomfortable for calling!?!? So she called me back after she spoke to him and told me he will have to study my file, think about how to handle this and he will talk to me about my options at my next Friday's infusion appt. Im upset because if he gives me more than one option....well I need time to think myself--not soemthing that can be decided in a 15 minute appt! I would like him to call me when he knows what my options are so when I see him I can have my Qs ready and maybe even a decision. Uggg--I am so annoyed.
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Ginny....you look great!
I just got back from #3. My blood counts were down to 2.9 so I have to go in tomorrow morning and have a neulasta shot. I'm really worried about the possible bone pains. Anyone else had these and what should I expect? If I'm going to get them, how soon will they start after the injection?
Rita0 -
Holly, you keep calling and forget about what they think. You need some answers and shouldn't have to wait like this!
Man, these doctors and nurses have to step back and reflect sometimes. I hope you will get some info soon and relieve the "unknowns". ((hugs))
Rita, thanks, but I think this is not the best photo. It was so nice of your son to help this stranger from Canada!
I'm so sorry to hear that you had to get that shot and your blood counts were down. My husband had it (he has a kidney transplant) and he did not get any bone pain at all. I think some ladies have talked about this on other posts. Ask them what you can take for this, just in case it does happen. ((hugs)) Hope all goes well for you Rita!
Hope everyone has a good weekend. Day light saving--yeah more sun! 0 -
Holly I would be calling first thing on Monday and letting them know you don't want to wait til infusion date to find out what the reccomendations are! If you need to get in earlier to talk do so!
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Ginny, just send Barry another photo if you want. He will do it for you again. He lived for many years with a very unpredicatible woman....me! :-)
Rita0
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