CMF Question
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Hi Mandy - I had CMF chemo in Seattle at a world class cancer center. I had gotten opinions from two other excellent med oncs in Olympia. I batted around all their ideas of TCx4, TCx6, ACT (the "gold standard") and then when my oncotype score came in low I was offered CMF, in Seattle, which seemed like a reasonable choice, given my diagnosis, and weighing long and short term SE's. I know I've mentioned this before, but will again that my mother was diagnosed with stage 4 breast cancer back in the late 70's and she was given CMF for a year (after radicle mx). She didn't get BC again. This also factored into my decision to choose CMF as it had worked for my mom. I also thought dose dense ACT sounded like a lot for lee and I have read that Armidex is for post-menopausal tx, but I'm no expert. Big hugs to you!!!
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Beanius: good to hear about your mom. My friend's mother had CMF back in the 1970s (I think). She was in some kind of trial for the CMF (this was in Canada but the trial was out of the US). She had several positive nodes and lived more than 25 years without recurrence. She died at age 83 of something unrelated. I had never heard of dose dense AC-T being called the "gold standard". In fact when I asked about it at Dana Farber, the oncologist there said that she did not recommend it for me and expressed surprise that I would ask about it.
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Lee, I feel so bad for you and anyone else that is struggling with making this difficult decision because I remember all too well how hard it was for me and I'm sure every other lady on here feels the same way. However, the ladies are right.....you really will know when you've met the right onc and you'll also know when you have all the information that YOU need in order to make YOUR decision. I finally got to the point that I REALIZED that it really wasn't about what any of the oncologists wanted or didn't want, it was MY BODY and I was the one that had to LIVE WITH THE AFTERMATH of whatever I chose to put into my body, as well as what I chose not to put into my body. For me it all became crystal clear when I ask my final onc to show me in black and white with percentages what the difference in the med's would make and after that I weighed what those percentages were against what some of the stronger dosages could quite possibly do to my other vital organs. Personally and just for me, the small percentage was not worth the other potential risks but all of our cases are different and it's about what you're feeling and what you want to risk and not risk. In my case, my onc agreed that anything else would be overkill but it was also available to me if I chose it. Good luck and my only advice to you or anyone else is that it really is YOUR decision about what YOU decide to put into your body. I think all of us will agree that any kind of CHEMO is not fun and there are potential risks involved with any of them but without it for some of us....the risks are to great of a recurrence not to take on CHEMO for the extra protection that it provides us. There's something about piece of mind also that comes with knowing that you've done all you feel you could have done to prevent this beast from coming back into our lives. I'm not saying that you have to do chemo, rad, tamoxifen, etc. in order for you to feel that YOU had done it all because I truly believe that each of us have our own set of rules on "DOING EVERYTHING WE NEED TO DO" ......it's really about what we each feel is enough. I'm going to send up extra little prayers for you and your decision and we'll all be here to cheer you on, encourage you and support you every step of the way regardless of the chemo you chose or the path you choose to take. Good luck with your decision and when you do finally have all the information you need to make your decision, make it, and have no regrets. For me, it was like a HUGH weight was lifted off my shoulders once I made my decision. Prayers to you.....
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Golfergrandma, welcome to the group that noone wants to join. This is truly such a wonderful group of ladies and I personally got some of the best advice from them. I feel blessed to have found this thread when I had to take my journey. It's definitely a doable chemo, however, it does have some side effects but if you prepare yourself for them, some can be controlled and some can be avoided all together. Remember to drink lots of fluids before, during and especially after chemo. You want to flush, flush, flush all that stuff out quickly from your bladder to avoid any damage. Also, remember to suck on ice chips when doing the M and F pushes....helps to prevent mouth sores. Take a really good book and try to relax during the infusion because the steroid, fluid, and cytoxan definitely take the longest time. I think my average time there was around 3 to 3 1/2 hours and that was if I didn't have to have blood work drawn the day of my treatment (tried to avoid that if possible). Good luck to you and let us know if you have any other questions and how things go. Prayers coming your way for Wednesday
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My onc score was 24, and the onc recommended 6 mo. of cmf. Because I'm 72, I think he thought CMF was appropriate because AC can affect the heart. I was diagnosed with ER, PR positive and had a mastectomy in December. I did not question his recommendation and I begin CMF Wednesday. I had HER2 10 years ago and had a mastectomy. I had AC at that time. This is my second mastectomy, but with a different type of cancer. I was still on arimidex (7 years) when my second cancer was discovered. Don't think much of arimidex!0
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golfergrandma - I am impressed that you are up for another go, good for you!
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Welcome to the CMF thread, golfergrandma. I am sorry that you have to face another journey. It sounds like you have a positive attitude and that always helps. I am a golfergrandma, too! In fact, we have a tee time tomorrow on a nice course in Fort Myers, Florida. It's hard to believe that we'll be playing golf while the rest of Illinois is getting clobbered with the heavy snow and ice.
I think you will find that the CMF is lots easier than the AC and you won't lose your hair. I take it that you are Her2 negative this time? That 's a plus! I'm currently taking the arimidex. So far it has been working for me but I hate the joint pains and the general aches. I can see why you're not impressed with the drug.
I wish you the best on Wednesday. Cabmom and the others have given you good hints to beat the side effects. Please keep us informed and let us know how #1 goes for you. Also, tell us a little more about yourself! :-)
Well gals, I'm crashing for the night. I have a sinus infection that's being really stubborn and won't leave.
Catch you later.
Rita
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Rita, I have a sinus infection too.....makes you feel horrible. Hope you're feeling better this morning. Have fun on the course and I can tell you that the midwest is definitely getting hammered. We were lucky and only ended up with snow, which is still coming down but the wind chill is like -20ish here and brrr is it cold. Anyway, hit'em straight and have lots of FUN....although I have to admit, I'm a little jealous right now
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Ritajean: hope that sinus infection gets better. They can be such a nuisance but maybe the sun and fresh air will chase it away.
Golfergrandma: Hope your infusion goes well tomorrow. You will find this is a friendly thread and we will be here to support you. I had CMF x 8 all IV and it is a doable chemo. The tips I have for you---all of the anti nausea meds are important but they do make you constipated. Try to take a colace type of stool softener the night before the chemo. And I ate a daily dish of stewed prunes with a small amount of plain yoghurt on top all through my chemo. Tasted good and prevented the constipation.
Lee: how are you doing?
Hugs to all.
Mandy
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ritajean and cabmom- So sorry about the stubborn sinusitis. A few years back I had a whopper of an infection. My ENT doctor told me about a particular saline nasal spray and it worked wonders. There are lots on the market, but none are the same. This one is in a pressurized can that you squirt up your nostrils. It immediately opens your sinus cavities (once you blow) and they stay open. My doctor believes we need to clean our sinuses like we clean our teeth because allergens, pollen etc stays there and causes problems. The spray is called entsol spray by Kewood Thearpeutics www.entsolwash.com. Any time I feel a cold coming on, I use this for a few days and it never develops.
golfergrandma- Good luck tomorrow. You sound like you have a great no nonsense attitude.
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Designer Mom: your nasal spray sounds great. Do you buy it on line or is it in pharmacies?
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Golfer grandma, I'll be thinking about you tomorrow starting CMF. I'm sorry you have to do chemo a second time now but I'm sure it will go well for you. The ladies here can give you great tips on what to do to help with side effects. I know from them to drink lots of water !!
About sinuses ...I bought a Neti pot at Walgreen's Pharmacy .. It looks like a little blue teapot. You can buy the premeasured packets of saline that to use in the pot and you don't have to worry about getting the right balance of salt and water. You use body temp water. Then you just use the teapot to pour the salt water into your nose through one nostril and it drains out the other. Keep your head over a sink of course!! If feels odd at first but doesn't sting like pool water would. I think it really helps to keep the sinuses clear. I also buy a saline spray that I can take with me and that also does wonders.
On the chemo topic again....any thoughts on the TCx4 treatment? It would be better for me than AC, but I'm not too sold on the Taxotere because of the possible nerve damage issues. I already have some of that going and don't know if this chemo would make that worse. Just another question I have to ask the new onc.....
Cabmom, it sounds like your onc was very willing to answer detailed questions about which chemo does what. That was great. I am realizing the good ones are hard to find. Hopefully my 2nd visit with this new onc will be better and I'll know what I'm doing soon..
Everyone, Hope you are all doing well tonight, especially those of you up north with all the cold weather. Stay warm !
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lee7 - one note on your neti pot - our ENT said we had to use distilled or boiled water so as not to adding bacteria to a moist area.....did you hear that?
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I have a neti pot (somewhere in my linen closet), but find I just don't bother with the whole ordeal of using it daily. My ENT doctor said that we should flush our sinuses frequently. Just given my busy life, it's hard to neti pot all the time. I think this entsol spray serves a similar function for all of us lazy bones.
Mandy- I was able to get the spray at some NYC pharmacies, but not all. My little neighborhood drugstore orders it for me. Like I said, I have tried a lot of the other brands, none are as good as this one.
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Raincitygirl- You're right. I should have explained the water I use in the pot is filtered. I have a well with a RO system that removes practically everything from the water so it is like using bottled distilled water. I wouldn't trust regular tap water and wouldn't want clorinated water running in my nose either.
Designer Mom- I have to admit I only break out the Neti pot when I'm having sinus trouble, so I totally agree a spray is a lot easier to use. I should really think about using it daily and see if I can prevent some of my sinus trouble. I'm going to keep an eye out for the one you mentioned.
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Hey gals, I really feel guilty parked here in sunny FL, which was in the 80's today while you Midwest gals and northern gals are getting hammered with blizzard-like snowstorms. I must admit that I'm glad I got out of IL when I did!
Designer Mom...I am going to search out your saline spray in a can. I have never run across that brand in our pharmacies so maybe I can find it on line. I am always up to try new things. I never did too well with the neti pot either. I guess I was too lazy also.
Lee, I hope your next appointment with the onc is better and that you get your questions answered. Hugs.
Good night all!
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The neti pot made me gag, I am such a weenie. It was the salt. I will search for the spray.
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My husband swears by this from Costco
Ocean complete sinus irrigation
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DesignerMom.....thank you, thank you, thank you. I will definitely see if I can find that saline. It seems as though I get infections like this a lot so it would be great to have on hand. Thanks for the tip.
lee, like everyone else, we all hope that you get the answers that you need to make your decision. You're so right.....an onc that will listen was really hard to find and one that would listen and provide me with the answers that I was searching for was harder but I'm so thankful that I finally did. TC was one of the treatment plans that was suggested for me as well by onc #2 (the mean one) but for me, I just wasn't comfortable with the what-if's. I know some ladies that did TC that did fine but others that are still having trouble. I know there's another thread on here that is solely about TC and might be something that you want to check out before making your decision.
Rita, okay definitely jealous now.....80
. It was so cold here today and the wind chill was insane. The snow finally quite a couple hours ago but hammered us all day long. If the wind hadn't blown most of it away, we would probably have at least 12 to 18 inches, which is what we have in some locations. The drifts are the worse part of trying to keep things shoveled out BUT thankfully it's finally giving us a break. Although the temps are not suppose to improve for a few days everything else has settled down. SO.....with all that said, still happy that you're in FL and out of this mess. Hope you had an extra fun day on the course and that you didn't have to play with any alligators, which is usually what we always end up playing with when we're down there....0 -
Cabmom....we did see a huge alligator on hole #13. We didn't get too close. They said she had a little one and was very protective but we didn't spot the little guy and didn't get near enough to investigate.
We're keeping up with the midwest storm through the TV and friends back home. It sounds like a real fun experience.........right? YUCK!
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Ritajean, This time, I had ER,PR lobular cancer. Go figure! Had my first CMF yesterday and feel pretty good, except for a little dizziness. Wish I were on the course! It's a little cool today in Forest, but we manage to play all winter when the weather cooperates. I'm a good 72 years, married for 47 years, have two grown girls and two grandchildren (boy 8, girl 11). Am an avid golfer and a pretty good cook. Can you tell me how to get my photo on my profile? Am having fits trying to download it. Keep in touch. Joyce
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golfergrandma - congrats on gettin # 1 done! I usually felt pretty good, then the third day got very tired, so I just started planning that as a day for more sleep. I kept up my regular excercise and hope you will keep up golfing. Wishing you all the best!!!
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Beanius
Was planning a trip to sam's tomorrow -- hope I won't be too tired, but will keep day 3 in mind.
Thanks
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golfergrandma- so glad you are feeling well after your first CMF. To upload your photo just click on the tab at the top of this page that says "my home". Up on the upper left corner you will see "add photo". Then you can upload from your computer. Don't we love technology? not!
ritajean- OMG! I don't know about alligators!! Be careful!
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Golfer Grandma..........I'm so glad that #1 went well for you! Just mark that one off your calendar! Remember to drink lots of water for a few days. If water doesn't taste good, try some crystal light or popsicles so that you get plenty of fluids to wash those nasty chemicals through your system.
I guess it's really not uncommon to have a different type of cancer the second time around. I'm just so sorry that you have to go through this again. Once is enough for anyone!!!!
Aren't grandchildren wonderful? I have three little grandsons....ages 2, 5, and 7. They are each so different and so precious. I don't get to see them as much as I'd like because they are in KY and I live in IL but I get there as often as I can and they come to grandma's as often as possible, too.
Thanks designer mom for giving Joyce the directions for posting the pictures!
We had another lovely day in FL and we golfed a really nice golf course. Tomorrow we're heading for the flea market and the dog races in the evening!
Hugs to all of you!
Rita
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ritajean - I think I mentioned I didn't have kids so no grandkids...but...I have 10 neices/nephews ages from 1 month old to 38 years old, and now there are 5 great neices and 1 great nephew...I got to see them all on my trip last month. My how fast they grow, my great nephew will be 9 next month. I had such a wonderful time with them, played games, went for walks, etc. I don't get to see them often enough due to distances. Now having got through cancer, my loved ones are more precious than ever. I'm trying to figure out how to see them more.
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Beans - I think you should have them each for a week or so all summer long
They and their parents would probably love that.....and I am sure at the end of summer, you will have had enough fix to hold you for a bit....Good to see you home
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Raincity..........what a great suggestion for Beanius!
Hey Beanius.....I agree with you. Our family does become more precious after a cancer diagnosis. We tend to take them for granted before that and now we know how important each day with them really is! So you buy Christmas presents for all these nieces and nephews? I wouldn't mind buying the presents. I just wouldn't want to have to wrap all of them!
I'm off to bed! Hugs to all of you!
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((ritajean))
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Designer Mom - I tried uploading a photo from my computer, but it didn't work. it says to browse which I did and picked a photo, dragged it to my home, but nothing.
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