CMF Question
Comments
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Hey there - just catching up on everyone's notes. I have one complete cycle in me ...2 more to go. Yeah! I am doing 2 weeks on/2 weeks off...like Carol, I think. But I also started on Taxotere/Cytoxan and lost all my hair from that. Peach fuzz here. Maybe it is already trying to grow back? Maybe wishful thinking.
The biggest surprise for me with CMF has been the cytoxan pills. 3 pills per day for 14 days. My onco said I could take them any way I want. The first week, I tried one in the am, one at lunch and at dinner. I felt queasy ALL THE TIME. I tried zofran and compazine...maybe those work when you feel REALLY ICK, but on the general, low-grade blahs...they didn't help. I really felt like a wimp. So on the 2nd week I just gobbled them all at once in the am. I think I have Susan to thank for that suggestion. For some reason, it did the trick...I didn't feel icky. At all. Almost 100%.
Water has been difficult for me. I know I need to drink a lot, and I do for several days after my infusion, but the taste is soo off for me right now. I am going the lazy route now and drinking lots of fresca and eating lots of brothy chicken soup!
Carol - good luck with your check-up!
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Carol...gosh! Those 6 months went fast! I have a mammo on the lumpectomy side every 6 months and a mammo on both sides once a year. They do bloodwork every time I go to the onc, so it's done every 6 months.
Ginagina....lemon flavors always tasted good to me during chemo and when I had nausea. I drank alot of lemonade. crystal light, and sucked on MANY lemon drops. I had problems with the water after a few treatments also. Popsicles tasted good though! It was several months AFTER all my treatments were finished before I could suck on ice or drink water. Hang in there!
Gotta run....we have yoga for bc survivors tonight!
Rita
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Hi Ginagina!
I found water pretty undrinkable and ice unpleasant by my second chemo. I would bring Italian lemon ice to suck on during chemo....in a little cup and had to use a spoon to eat it. I liked it because it had a fresh flavor and was just lemon juice, sugar and water. And I found ginger very good for nausea....I started out with regular ginger ale but ended up buying ginger beer which is just a stronger version of ginger ale, favored in the Caribbean. I would bring my bottle of ginger beer in to hydrate myself during chemo. The other things that I found I could drink were san pelligrino orangiata (orange soda but a tart, not too sweet flavor) and limonata (the lemon version). I could get the drinks at my local Whole Foods and the italian ices at any super market because where I come from (Philly) everyone loves "water ice" as they are called.
Fresca and chicken broth sound pretty good to me too.
Hope you feel better soon.
Mandy
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Rita ... thanks for your input ... so as far as I can see, asking for some type of scan on my good side or bad side every 6 months is not out of the question. Bloodwork ... is that looking at tumor markers or what? I've only had blood drawn for my hormone levels, Vit D and liver enzymes (or is that a tumor marker test ?) Guess I have some questions to jot down.
Gina, your right I did the 2 wks on/off .... I would take a Zofran first thing when I got out of bed, then down my (3) cytoxan pills about an hour later. Can't say I ever really had nausea, and just every once in a while did I prefer an evening of "Cream of Wheat" for dinner. My worst problem was regulating the other end "so to speak". I learned that a bit of Miralax did wonders, too much ... not so good !!!!! It's funny to me now ... I kept a detailed log of each day ... I've already forgot about some of the yucky days. Hang in there gal !!!
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Carol,
I have onc appt. every 6 months, and they do bloodwork every time... just a metabolic profile, I think. My onc doesn't do tumor markers, and I don't get PET scans or CT scans.
But, I DO still see my surgeon once a year. He orders bloodwork, and a chest xray, and a breast MRI. The MRI is because even though I had a bilateral mast., I may still have breast tissue, so it's a good idea to get these type of scans for local recurrence.Oh and my onc said that when I reach the point where I am 2 years out from when my treatment ended, I may only be seeing him once a year. I'm not sure I'm comfortable with that arrangement.
Hugs
Harley
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Carol, I have a complete blood panel done. It tells the levels of all the minerals and basic components. My onc does the tumor marker test and the liver enzymes test. He even tests for cholesteral because high cholesteral is often associated with Arimidex. He also gives me a very good breast exam. He and the surgeon have me on a rotating schedule so that I see one or the other every 3 months which is good, I guess but creates quite a bit of anxiety for me. They only do the mammo on the good side once a year but do the bad side every 6 months so they can keep a watch on that radiation damage that I have. Then I see my radiation oncologist only once a year.
Harley, I guess I have to see my oncologist every 6 months for as long as I'm on the Arimidex. Next time he's scheduling a bone density test to compare to the initial one that was taken before I started the Arimidex. It seems like there is always some type of doctor's appointment lurking around the corner but I guess it's to our advantage to catch things early.
Hugs to all of you.
I'm off to find my book and just relax a bit before I fall asleep!
Rita
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Oh my gosh how this thread has grown. I was one of the first CMF'ers posters to this thread which seems so long ago now.
I was diagnosed with ILC on May 7, 2003 and on April 9, 2009 I took my last Tamoxifen pill. I am officially done with treatment and have been released from the care of my Oncologist and Surgeon.
Good luck to all who are still in treatment.
Mary
PS Hi Rita, hope you are doing well.
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KATS! It is SO good to hear from you. Congrats on being through with the Tamoxifen and treatments! You are still my inspiration!
For awhile, it seemed as if very few gals were getting CMF but lately more oncs seems to be opting for it. You and Lisa are prime examples that it does work! I think of you often and I'm so glad that things are going well for you. You helped me SO MUCH as I went through the chemo and I'll always appreciate it! Even though you are officially done, stop in and say "HI" to us every-so-often.
Hugs!
Rita
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Mary, thanks so much for popping into the CMF board. For those of us that just recently finished up our txts, and others in the beginning or middle of their regimens, it means the world to us to read the success stories such as yours. WoW ... what great words to hear "released from care" !!!!!
A raised high-5 to you !!!! Thanks, Carol
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Kats - I agree - it is SO NICE to hear that you are DONE! Congratulations!!!! It is always so empowering to hear positive stories like yours. My hope is that we all meet that same goal!
Mandy, Rita and whoever else posted on the lemon flavored drinks and candy - I will try that this week. I now have the metallic taste 24/7. YUCK! It really makes water taste terrible. I also still have the very heightened sense of smell. Hopefully, these things will go away when I finish.
Susan
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Mary - Congratulations on being finished. You must be thrilled. It is so wonderful to hear all of the success stories it makes the rest of us know that there are good endings to this horrible disease.
Carol - It was 6 mths since my surgery and I saw my BS last week. All she did was a quick exam. No blood work or anything else. I am scheduled for another appt. with her in Sept. and also a mammo. What dates do they use? The date of surgery or when you finish chemo? Since I was on the trial, I have to see onc. every 3 mths. I will see her in June. I know she mentioned she would do a full blood work up at that time. So right now I will see onc. in June, Plastic Surgeon in July and BS in Sept.
Hope everyone is doing well that are still in treatment. Hey the SUN came out in NY today! YEA!!!
Colleen
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Mary- I will do my first chemo tomorrow morning. So it's really good to hear from someone whose been all the way through it and come out the other side,
I'll admit I'm a little apprehensive about tomorrow. But my sister is going with me- and that makes me feel a lot better. My husband offered-but I think I would end up worrying more about him than myself. Yesterday I got a card from my onco office and all it said was that my Ca 15-3 test was normal. I'm looking at it going WTF is a Ca 15-3. So of course I got on here and found out what it is.I think that without this website I would have been totally lost during all this. It really has been great to get answers to all my questions from all you wonderful people.
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PatMe ... go get um and kick some cancer "pa-tu-tee" ..... I have this hunch that we'll be hearing from you here soon and the apprehension from that first chemo visit will be in your memory banks !!!! Remember to keep up with the fluids !!!! We're here for ya gal !!!!
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Had a non eventful onc appt. No blood work (except my request for a cholesteral test) will fast and do later, nothing more than a breast/chest exam and a discussion (no big surprise). Will be back to see him in 3 mo/along with my Zometa infusion at that time. His recommendation, do your MRI and Mamo at the same time (with each having different findings), but he said I "should" wait until December which will be 12 mo from the last. He told me this prior to leaving the room for me to disrobe, while waiting I thought wait a minute, I wanted ol' lefty removed from the get go and was told by the surgeon it would be looked after more so than in the past. I mentioned this my onc upon returning to the room for my exam. He said that even though I'm "high" risk, waiting until Dec would be appropriate. Hmmmm, so other than adding a MRI in December, along with my routine mamo, I have no diagnostic testing. Doctor said that if I'm feeling good ... no need for any tests/scans. Althhough I think I live with the thought of my glass half full .... I felt pretty damn good in Oct 07, and within a matter of moments my world was turned upside down. After chatting with the dh this afternoon, thinking I'll wait until my appt in Aug, and if I truly want to have something done at that time we'll push the issue. In the moment ... I will remind myself that Life is Good !
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Carol...My onc doesn't believe in scans unless there are underlying symptoms so I had no scans after my treatments were finished. I'm surprised that you didn't get blood tests and he's waiting 12 months to mammo or MRI the left side. Still, I'm sure he knows more than I do! LOL It's amazing how differently oncologists feel about these issues.
Pat, Good luck tomorrow! It's normal to feel apprehensive but I bet you'll be surprised how uneventful the actual treatment is. We'll be anxious to hear how you do!
I golfed in the opening day ladies golf scramble at the Club this morning. It was so nice to get out in the sunshine with a great group of gals and hit that little white ball. Carol, you are so right! Life is good!
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Pat,
Thinking of you, on your 1st chemo tx! Hope all goes smoothly! Let us know how you're doing, when you get a chance!
Carol,
I have noticed that ALL my drs. have a different idea of how to f/u with tests, which tests to get...
I am glad that I see my surgeon once a year, and will for ever. He always does chest x-rays, but my onc never mentions them as part of 'regular followups' or regular routine testing.
Oh, and when I see my onc, I don't take my clothes off. He just 'feels me up' over my clothes! Do you think he can REALLY feel anything that way??
Rita,
I also don't get any scans, unless I'm having some kind of pain. The bloodwork is just a routine metabolic panel or whatever that is... no tumor markers.
How do we know if we are getting ALL the tests we need?? I guess that there is always that thought in the back of my mind, what if there is something there, but because they aren't doing regular tests or scans, they won't find it ... til it's too late??
Hugs to all,
Harley
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Just popping in to say hi. Had my 4th CMF infusion Monday along with my 1st Zometa infusion (clinical trial), and some combination of the two totally kicked my butt this week. I had a fever, aches, nausea and extreme fatigue. I seem to be over it now, but if I needed a reminder that chemo isn't supposed to be a walk in the part, that was it. Yuck! Only two more (CMF) to go.
Hope everyone is doing well. It's so good to hear from long-time survivors. Also glad to hear the new survivors post-treatment tests are coming back clear. Yessssssss!
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I know that this is probably totally wimpy of me, but last night was miserable. Bad acid reflux and head ache. Felt like I had major hangover and didn't even get the fun of drinking anything. Also, my face and hands are retaining a little bit of water- not bad just a little puffy. I had thought I would get the next one in the morning and go into work- but I don't think that's going to work for me. Is this what everyone else felt? I feel guilty even complaing - there was a young girl -she looked about 22 sitting near me who was also getting her first chemo, and she was getting a much toucher regiment. Bless her heart.
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Samiam- sorry to hear that this chemo was tough. Glad you are over it. I, too need to remind myself that this is chemo, and even if it is "lite" it still has side effects.
Patme - my oncl. has me take prilosec daily to avoid reflux and I think heartburn. I haven't had either. I take cytoxan pills daily so I think that is why she prescribed the prilosec. You may want to try that. Do not feel bad complaining - others do have it tougher, but it is hard to go thru any form of chemo or cancer treatment. I get my infusions on Fridays so I can have Saturday to rest up. By Sunday I feel much better.
Susan
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PatMe, sorry to read round one wasn't so swell. How much water had you drank prior to your txt, and we're you able to pound down a ton afterwards? I'm talking about 80+ ounces. Acid reflux has been a problem for a few, maybe add a little PePcid to your arsenal of meds! For the other end Miralax seemed to work pretty well for me.
Oh, no wimps here ... Everyone is different and the cocktails are strong stuff. Hopefully with you sharing we'll be able to add our two cents worth and help in some way.0 -
PatMe, sorry to read round one wasn't so swell. How much water had you drank prior to your txt, and we're you able to pound down a ton afterwards? I'm talking about 80+ ounces. Acid reflux has been a problem for a few, maybe add a little PePcid to your arsenal of meds! For the other end Miralax seemed to work pretty well for me.
Oh, no wimps here ... Everyone is different and the cocktails are strong stuff. Hopefully with you sharing we'll be able to add our two cents worth and help in some way.0 -
PatMe: You sound alot like I would have after the first TX. I had terrible heart burn. After that I was given a prescription prilosec which I continued every day and I am on the every 3 week cycle. I had the fluid retention and the diuretic did not work--but acupuncture helped with that. I ate stewed fruits and for breakfast and dessert at night...they did wonders and tasted good too! I could never drink the amounts of water that Carol suggests....she is a miracle person....and after the first TX water nauseated me and I am only back on it now. So I bought individual bottles of ginger ale, juice, flavored seltzer. That way I could carry them around with me.
My onc actually thinks that CMF is a hard chemo and does not know where it gets its easy reputation from. She thinks it may be because most of us retain our hair. But she says the 6 months of other side effects can really take it out of you.
I had very severe side effects after TX 6 and 7 so I am probably not having TX 8. I feel ok about it because many doctors just seem to give 6 TXs anyway. I am probably going tamoxifen but my onc wants me to give my body at least 4 months to get back to normal so that will be in September at the earliest.
In the meantime, I have happy news....I booked my trip to the UK for my English cousin's 95 the birthday. I am going to stop in Paris for 4 days on the way ---I have a friend there I haven't seen for years. And then on to the UK. The whole contingent of English cousins will be at the party so it will be wonderful to get there. Last year I got sick at the beginning of the summer and canceled my vacation....so this will be a real celebration for me! And thanks to my British Airways frequent flier miles, I was able to treat myself to a business class ticket!! I am so excited.
Much love and many hugs to all
Mandy
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PatMe...I'm so sorry that you've had such a terrible time with this first round. I guess I was lucky because I never had any of the acid reflex or any heartburn. Didn't just break your heart to see that 22 year old gal there doing chemo? I'm walking in the Peoria Walk tomorrow and I'll cry half the way because there will be so many young gals wearing those pink shirts. Hopefully the money that's raised from all these races and walks this summer will fund the research that finds the cure. We need that cure!!!
Mandy, did your onc ever tell you why he chose the 8 treatments over the standard 6 treatments? I'm always curious about these things because it continually amazes me that the onc throughout the country think so differently!
Well, my kids are coming in for Mother's Day and they should be here in a bit so I need to get out of here.
Happy Mother's Day to all of you! Enjoy your day! Let your family pamper you! Hey, we deserve it!!! :-)
Hugs to all of you.
Rita
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Mandy,
YAY! Since you say you might not have to get Tx#8, You are finished chemo!! YIPPEE! Congrats!!
Congratulations on your trip to the UK, too!! When will you be leaving? Have a safe, and wonderful trip!!
Hugsxoxo
Harley
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Ritajean: I asked my onc the same question at the beginning. She said that she liked to do 8 because the studies were always with 8 tx and while lots of people used 6 there were no major studies with 6. But they use 6 in the UK and in Canada and it seems like a good number to me.
Harley: I hadn't thought of it as finishing chemo because it still is up in the air. But I have likely finished chemo. Thanks. As for my trip, not until the end of July, beginning of August. I leave for Paris on July 17 and return home on August 5. They run out of those frequent flier tickets during July and August so you have to book early.
Everyone, have a wonderful weekend and a wonderful mother's day!
Mandy
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Thanks everyone for your concen. I am feeling 100% better now.
Carol- I didn't drink a lot water before chemo-but after wards I fet like my eyeballs were floating.Ha!
Mandy- Your trip sounds wonderful. Have you been to the UK before? I've been to the Paris airport - but that was it. Some day I would love to go back and actually see the city. I love to travel - in fact I was just thinking a couple of months ago that it was time for another big adventure in my life. Well, I got one, but breast cancer sure wasn't the adventure I had in mind.
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Hey Everyone! What a crazy couple week I've had. Am thru 18/33 rounds of rads. Other than my nipple turning purpleish it's going ok. Really can't wait to be done. It just get tiring going to the hospital everyday. Can't imagine if the ride was more than the 5-10 minutes it takes me each day.
Patme-I was one who had very few se with the cmf. Fatigue was the worse for me. My blood counts were always good and alway felt a little hungover the day afterwards but it never really held me back from doing anything. I did drink tons of water and sucked on hard candies during treatments. Took Xanax the night of treatment to counteract the steroids. I had 8 roundsonce every three weeks.
Hard to believe that this whole journey started for me on 6/12 and it has been almost a year. These are the words of encourgement I am giving to my daughter. She got her brace yesterday for her back. It isn't quite as bad as I expected but she looks a little boxy in it. We had to get her a new wardrobe of shirts that are long and "poofy". She is going into it with a good attitude and pray that it stays that way. She is such a good kid and I'm so proud of how strong she has been. It looks like my good attitude has rubbed off on her. She went thru her 1st MRI and was scheduled for 2 more but we condensed it to one for next week. It will take about 1 1/2. My nerves were pretty bad this week and was able to cry at the drop of a hat which isn't like me but as it turned out I got my period AGAIN! Only 3 weeks apart this time so I wasn't expecting it. A friend of mine who was on CMF 17 years ago told me hers was so irregular after CMF. She wouldn't get it for months and then would get it every 2 weeks then once a year...ugh!
Happy Mothers Day!
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Hi Scarp: Glad to hear from you. You are almost there!!!! I agree it is a drag to go to the hospital every day for rads but for me, at least, it was "in and out". They stuck to their schedule. If your nipple starts to hurt, I recommend emu oil. A friend learned about it from Dana Farber where she was treated and suggested it to me. It is expensive but a q-tip's worth goes a long way. And your daughter sounds wonderful....she should be an inspiration to all of us to go forward with a positive attitude. I think having you as a mother probably helps too.
PatMe: I also love to travel and put a trip to Malta on hold for a year. I was literally having surgery the day I was supposed to leave for Malta. I have been to Paris twice--once when I was 6 years old and once almost 5 years ago when I took my girls there for my younger daughter's 16th birthday. The fares were good and it was one of those trips where everything worked out....we were moved from the cheapest room in the hotel to the best suite so we had a lovely balcony with geraniums overlooking Paris. We were even bumped up a class on the flight over!!! And since everything was reasonable, it probably cost less than the average Sweet 16 party. I am really looking forward to going back. And with cousins and friends in the UK, I have been there many times--and I love it more each time. I have wonderful friends with a large house in London and that is where I stay.....so I get to see friends there too. Now if I can just put all the other pieces together......
The Race for the Cure is tomorrow. I have always done the 5 K walk but I am a fast walker so I always come in with the runners on the list. I registered this year like always, but I don't think I will make it to the Race. There is always next year! My 20 year old daughter did Relay for Life for her university (benefits the American Cancer Society) and raised $550!!! Anniealso here was one of her supporters!!! Thank you Annie!
Anyway to those of you who are moms and to those of you who are not, it is the same to me. We should all celebrate Mother's Day! Have a wonderful day tomorrow!
Mandy
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I hope all of you had a happy Mother's Day! My kids have gone home and it's pretty quiet around here. I must admit that I am exhausted. We did the 3 mile walk in Peoria yesterday. As always, I cried when they played the survivors' song and teared up again during the survivors' walk. There were just too many pink shirts. They thought that the walk would bring in over a million dollars. Maybe some of that money will help find this cure that we so badly need. Anyway, if you've never walked in one of the big walks, you should do it just once. It is indeed an awesome experience..
Scarp..at times that treatment year seemed so long and yet when I looked back it seemed like it wasn't that bad at all. So glad you daughter has such a good attitude about her problems. She sounds like a winner!
Well, Carol, I hope you're traveling to Illinois in July, too! What dates???? I'm not far at all from Peoria!
I'm ready to quit for the night. Have a good evening, gals and a great Monday!
Rita
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Hello All - I hope everyone had a very nice Mother's Day!!! We just went for a long walk with the kids and the dog in a park and then went to a early dinner. I did have some bad news though my good friend (that I have known since we were 3) her father passed away last night. He was only diagnosed around Easter with pancreatic cancer and declined so fast. I was very close with her family, I would always go on vacations with them when we were kids. They were like my second family.
Patme - I am sorry you had a tough 1st round. But even though some say CMF is lite, everyone is different and the se's are different for each of us. Never feel bad about complaining, that is why we are here, to listen and maybe help.
Scarp - I am glad that your daughter seems to be adjusting. I am sure she gets her courage from her mom!!!!
Mandy - Your trip sounds wonderful, you most be very excited.
Well getting pretty tired. Goodnight!! And have a nice week.
Colleen
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