CMF Question
Comments
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Hi everyone, thanks for all your welcomes!! i went in for my neuprogen shot today, and am starting to feel achy. have another one tomorrow, and then chemo friday. i had a bilateral mastectomy jan 7 2009, and am scheduled for 6 months cmf then 3 years tamoxifen. my daughter is very leary of tamoxifen. also, i did no radiation, can one of you guys explain for us why some have radiation on a bilateral mastectomy and some dont? i thought if you removed all the breast, there was nothing to radiate. is it for the lymph nodes? why then, if the bad ones are removed during surgery. what are you guys thoughts on tamoxifen? thanks for all the encouragement, we will get thru this.
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SoCalLisa, great pictures. On a trip to California oh, about 15 years ago, I saw a tennis tournament at Indian Wells. It was a lot of fun.
Scarp, congrats on being done with chemo!!! One thing you said caught my eye. You are still getting your period? I thought my doc said CMF would make that stop. Guess that didn't happen for you?
SusieQue, some of the ladies on this board had lumpectomy, so that may be why they are getting rads. According to my surgeon, the only reason to get rads with a mastectomy would be if the tumor was extremely large, close to the chest wall or if they did not get clean margins. Good luck with your first CMF on Fri. I wouldn't worry too much about the tamox, at least not yet. Some women have a bad time with it, but many have no problems at all.
As for me, I'm feeling pretty good. The Emend worked wonders and I've had almost no nausea today. Just a little tonight and I took a Compazine then ate a full dinner. I've had one sort of bizarre side effect--some difficulty swallowing--but it's nothing major.
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Oh my god, what an idiot I feel like...........the appt. is for THURSDAY at 12: 15. This just goes to illustrate why one should not write down appts. the day after one returns from the hospital.
Another day of anxiety, but .........it also allows me another day of prayer
.Scarp: A BIG WAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
YOU DID IT!!!!!!!!!!!!!!!!!!!!!!!!!!!
(If it helps, I had a very bizarre reaction to the decadron, instead of the M....they could only give me 1/4 the dose everyone else gets....so we are all the same, but different. I like to think we allergic gals are "unique"...doesn't that sound better?)
DONE IS DONE, BABY. Congratulations to our two winners, Mandy and Scarp bigtime!!!!!!!!!
xoxo
annie
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oops: SuseQ we crossed in the posts: I had tamoxifen: it was a big nothing for me. I felt great, I had tons of energy, lost weight....never got any of thse scarey SEs. My advice: don't read up on it, or you'll think you have them. If something presents itself more than once, then mention it. I kept my period the entire time, tamoxifen is for ladies pre menopausal, which I was then (46) and arimidex for ladies post which I now am post ooph/hysterectomy and was compliments of lupron.
Perhaps my good luck with it was also due to my changing my diet to lots of fruits and veggies, little or no alcohol and multi vitamins. I don't know, but I had no probs with it. Arimidex is a different tale, more aches and pains and stiffness, but not too bad with it. It's doable.
Yes, still had period and lots of estrogen at 53 (arghhh) but done with it now!.
I had only rads the first time in 2001 as I had only IDCIS and very tiny. Only had a lumpectomy. I did have HER2neu+, which is most likely why it came back. That, and being the Queen of Estrogen. This time around I could not do rads 2x in the same boob, so I said, enough, and got her prettied up after the lumpectomy, wish I'd done that the first time.
As for rads: I got very tired after it was done, but during it, I had a 12 year old, so I'd take her to school, go get rads, zap zap, done, get coffee, go to work. 8 1/2 weeks, 5 days a week. I did get like a bad sunburn on the boob, but it just made it thru. My hair did turn white tho, most intruiging, like a smurfette. The color all came back after. So weird, they had not seen that one before.
Anyway, everyone's txtment is tailored to their specific needs and the type of cancer it is. Please reassure your daughter about tamoxifen....mine was terrified of it, and now she is 20. But at 12...........you don't say how old she is, but I know it sure took lots of chats to get her comfortable with everything that was going on. In retrospect, I think I should have been alot more open with her instead of trying to shield her, at least that's what she tells me now.
Good luck, if I can help you further, just ask. I figure the whole eastern seaboard has now seen my hoots and/treated them, so they should have their own website so they can help people. I have taken them to talk to so many drs. at this point, I think they could be authors as well
.Oh, Mandy and Scarp, so happy for you guys!!!!!!!!!!!!!!!!!!!!!!!!!!!
xoxo
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Annie - omg - 8.5 weeks of radiation - yikes. It's nice to hear that you did find on tamoxifen - I am hoping to have minimal side effects on that. My daughter is almost 12 so I found your post very insightful.
Mandy and Scarp - congratulations! Both of you hit a big milestone - can't wait to join you.
Suzieque - some bc.org women are getting together in Seattle (Red Robin on the water- Alaskan Way) on April 15th at 6pm. I don't know if you are ever in the city, but please join us if you can. Some are currently in chemo, some are finished.
If anyone wants to join us and visit Seattle, let me know!
Susan
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Hi Susieque..good luck with the neupogen shots..I really had horrible bone pain, and they cut down on the amount in my injections ..it still worked just as well, but the dampened the bone pain...
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Hi, everyone! Am I glad I found this thread! I'd been doing one with a group who were having all these ses but noone was doing cmf. So I didn't know what to think. The 2 days before my 1st treatment(which was yesterday), I was so emotional. My husband went with me but did have to go to work. Someone's got to keep bringing in the income regularly! But I have to say that I was only in there for 3 hrs. They gave me the MF by push and the C by drip. Afterwards asked the nurse if the mall was in walking distance (figured I'd give hubby more working time) and she seemed surprised I wanted to walk but it was a gorgeous day and the mall wasn't far. Didn't really feel like shopping and when we got home took the dog for a long walk. i really think the fatigue was more from lack of sleep than anything else. No nausea; did have anti-nausea in treatment and meds last night. Feel fine this morning. I have CMF every 3 weeks and they also want me to do rads but my PS wants a second opinion. I had original simple mastectomy and later prophylactic which did definitely cut into my work schedule (I teach ballroom dancing so have to be physical). Both were done with immediate recon (ballroom dancing is a vanity biz!). The reason my onc wants me to do rads is becuz I was multi-focal all with LCIS, DCIS, and IDS. Largest tumor 2.3 cm but in all added up to between 4-5 cm. I/3 nodes with microscopic tomor cells less.2mm. Nothing in other breast. According to my report (as I understand it) nothing was close to chest wall but can anyone explain margins?
I do understand both sides but I really don't want rads.
Sorry so lengthy first trip in but I'm relieved to find you guys!
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Hi bolerodiva
The margin is the area around the cancer tumor when they excise it. Some places feel that a 1 mm margin is sufficient; some places feel that 2 mm is required. This would be the area around the tumor or if the tumor was near the chest wall and you have a mastectomy, it would be the distance from the tumor to the edge of the mastectomy. when they look at your slides they can see if there is a margin.
Radiation is big treatment because you can never be radiated in the same place again. It also can change your plastic surgery options. So why not get a second opinion, from a radiation oncologist at a different cancer center, on whether radiation would be recommended.
Sorry you have had to join this group, but you will find the CMF thread is full of wonderful gals who will support you each step of the way. By the way I just finished 7 weeks of rads and the treatment was not painful or difficult.
Mandy
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WOW ... We have reason to celebrate here on the CMF post. Big high fives and hugs for completing your chemo regimes Colleen and Scarp.
Mandy your following close on their heels and heck you've gotten your rads out of the way.
AWESOME news ... For those still in txt, hang in there, you'll be there before you know it !!!!0 -
Bolerovida, I was as well very fortunate to feel pretty darn good throughout my 6 month of CMF. Although I did my "C" orally, I took an anti nausea pill just in case. Never did have nausea, hard just a bit of GI distress which I finally figured out by the end, hair thinned but no big deal as well. I had no real issues with fatigue (work full time, physical job). My thought looking back ... Don't sit there waiting for the other shoe to drop ... It more than likely will not !!!
Good luck and always ask if you have questions, we have true veterans, new vets, and newbies as well. Lots of good advice if needed
Lastly ... Drink LOTS of water, I truly think that helped a lot.
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Thanks Carol,
I had spent a lot of time online looking at all scenarios but I think the worst was remaining with the other thead although they were very nice and some quite humorous but all their ses panicked (unfortunately take after my Mom in that respect and I nag her about so try to catch myself)! Did you ever feel your immune system was compromised? I'm around a couple people who get sick kind of frequently. How was your fatigue?
Thanks for the info Mandy,
I am going to get a 2nd opinion from a rad/onc; mine is hem/onc. She's very recommended by a friend of mine who went through hodgekins and BC. Loves her. But both my Bsurgeon and PS would like a second opinion as well. The onc and sur are in different areas. Even though I was multi focal, my report says "the deep margin is well away from true chest wall. All other margins are also free."
Thanks again,
Susie
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Hi ladies:
Bolerodiva: I had neupogen shots as well, but I was fortunate to have no SEs at all from them. Actually, I should amend that, the first night, I ached in my major muscle groups, took a tylenol, and then was fine from there on.
Good for you to get the second opinion....you can of course still do the recon with rads (I had a mess!!! Prev. rads boob, necrosis, etc., and yup, my PS still could do it) but it can complicate things....if you need it, you need it, tho.
Now may be the time to ease up on the BR dancing, or to keep a lighter schedule. If your body is used to it, that's good, but anyone is advised to rest if they need to (and they will) during chemo txtmnts...You might be able to continue in a lesser capacity, so explore all options.
Fatigue is part of this stuff.....you may need some time off. Don't ever push yourself during this!
I know that people can and must work during it, but try to steer clear of the sickies....echinachea has been proven to be useless, so has Airborne, but you can and should wash your hands or carry a little bottle of purell everywhere. My kid was in her first year of college the second time around and dorms are petri dishes....but purell saw us thru. It's also worthwhile, not to go to malls, or anywhere there are lots of sick people. Kind of like just not asking for it. If you get sick from something, it can delay a chemo txtmnt, and you don't want that!
The good news, iit's spring, and most bugs will be over and done!
Good luck w everything! Like Carol says, drink that water!!! And avoid anyone coughing, sneezing or blowing their nose like the plague.
xo
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Susie (bolerodiva), welcome! I just had my 2nd CMF on Monday. Sounds like we are on the same regimen and the same schedule. I also get my C by drip and M&F by push, and am having it every 3 weeks. My first tx took 3 hours too, but the 2nd only took 1.5. There was a lot of teaching for me at the first session. After that, they just kind of give you the drugs and you are off.
You might not have felt fatigue after your 1st session b/c they give you decadron (steroid) with your C, so that kind of wires you up a bit. Don't be surprised if some fatigue hits you today or tomorrow. My experience has been that I get my tx on Monday, feel a bit of fatigue and yuck on Tues and Wed, but by Thursday and for the rest of the time until my next treatment, I feel basically fine!
I have 4 kids and the 2 youngest have been sick on and off for the last several weeks. My 3 year old especially has been coughing all over me, but I haven't caught any colds yet. Just take precautions and you should be ok.
I don't know about the rads question because it wasn't recommended for me. But I'm off to check my path report b/c now you've got me curious about my margins.
So glad you found this thread! Good luck!
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Welcome Bolerodiva! The side effects from CMF chemo are so different from those experienced by the gals doing other chemo regiments. Like you, I started out with a great group of gals doing AC chemo but I gravitated toward this thread because they were having such terrible effects and I actually felt guilty. The CMF chemo is quite doable. You will do fine. Carol gave you good advice when she told you to drink plenty of water. It is also a good idea to suck on ice chips or something extremely cold while having your treatment to ward off the mouth sores.
Samiam...so glad to hear that you're doing well! Now if we could just get this weather to stay warm!
Oh Annie...just what you need....another day to wait! Well, soon the waiting will be over and we'll all be celebrating your good news! HUGS!
Everyone have a good Wednesday!
Rita
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Susie ... by no way is there a guarantee from not getting the crud .... but I will say that I had chemo from Jan to June last year and I never caught cold/flu one. I swear the chemo drugs help knock half the crap that wants to sneak into our bodies. Just my thought .... probably nothing more than being lucky !!!!!
I had little to no fatigue as long as I slept well ... I did/have used a little Lorazepam to help in that department.
Lastly... second opinions .... IMO a must !!!!
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Bolerodiva, (and others)
How did you decide on CMF? My primary onc recommended ACT,or TC, but i went for a second opinion and CMF was the recommended treatment, I must admit that I like the lesser side effects, but 6months seems like forever. I am having such a difficult time deciding. My thoughts travel between thinking my day to day life willl be easier on CMF altho for a longer period of time, to just blasting the cancer and getting over it in 3months time on TC. Another concern I have is that my first onc does not think that the CMF is quite as effective with the pos nodes. I am really stressing out over this and want to make a decision soon, as my first treatment will start apr.7. Any thoughts are appreciated.
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Congratulations Scarp!!!
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cascader - The CMF was what my onc recommended, but I also had no node involvement, so maybe someone else might be able to help with this for you.
Susie: On my chemo I was on a trial where I would get tx every 10 days for 8 tx's. I had to give myself the neuopgen shot for 7 days in between the tx's. I never had a prblem with the shot and I also never really got sick. My blood counts were only borderline once, but I was still able to have the treatment.
I received my time for my surgery tomorrow. I have to be at Sloan at 8:00 and I am scheduled to have surgery at 9:45. I am hoping that everyone is on time. Because I know that just because I know I can't eat that is when I will be starving. It always happens when you know you can't do something. Sometimes I will not eat breakfast until really late, but knowing I can't will make me want it more lol... I will check back in and let you know how everything went.
Annie - I am sill praying for your good news!!!!
Hugs To all,
Colleen.
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Welcome Cascader and Bolerodiva -
Bolerodiva - I have had very little se's, and like Rita felt kind of guilty on the Jan. chemo board as I really have nothing to add but sympathy. I do drink TONS of water which was rec'd by my oncologist. I work a couple days a week as a teaching asst. in a special ed classroom and have not been sick. My kids were sick right when I started and I did get that cold but seemed to recover quickly like a normal cold.
Cascader - I am thinking that your second opinion is from SCCA - oh how they LOVE CMF. They really do. I can't answer the question about positive nodes but I am under the impression that with your grade 1, the harsher chemos would not target as well as CMF which targets the grade 1 well. I could have this mixed up,so someone else chime in if I am incorrect. My oncologist also said that many women chose the harsher stuff as they think it will be better but every case is different. I wonder if you saw Dr. Ellis. You would be done quicker with the other stuff. I am happy (?) on CMF but if you chose the other you will get thru that too.
My oncologist told me that with grade 1 and 2 CMF was better, especially a 6 month version of it. My oncologist also wanted me on CMF as it is less toxic, first line (?) and I am node negative. I think first line means that the other harsher chemos are available to me if I have a recurrence (some you can only have once).
I have not had side effects, BUT take a prilosec every morning one hour prior to eating to avoid heartburn which is common at some point, and have compazine for nausea which I take the day of infusion as well as the next day or two. I take the C daily orally, and get the MF thru a weekly infusion. I am on a strange schedule - thanks to my oncologist.
6 months is a long time, but I am 1/2 way done now, and it went by pretty fast.
Hope everyone is doing well!
Susan
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Cascader: I had a positive node and so did some others on this thread. If you are unsure, call the oncs back and go over it with them.
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thanks aprilgirl. yes it was scca who thought cmf is best for me.(i saw dr. vk gady) i am assuming that they often recommend this? why do u think that is? i had not heard that about the grade and harsher chemo, but i like the sound of it. i guess that is really what i am wondering..if cmf is enough. i guess i should call scca and ask more questions.
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I would call SCCA and ask more questions. I know someone else who had their 2nd opinions at SCCA and found them very easy to call back with questions. However, I also know that SCCA and Seattle in general really like CMF. I had my first opinion at Virginia Mason who also mentioned CMF as a good choice for me.
Call them today!
Susan
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Hi there..I had a positive node..and did CMF eight years ago now...
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Cascader-My onc did go ahead with having me take the oncotype dx test which is for er+, node neg. cancers and my score came back at chemo low benefit but I do have one pos. but less than .2mm so she also is a strong follower of sloan kettering which put my recurrence higher. I believe at 19%. It is a slow growing cancer which chemo attacks in general the more agressive cancers. Since mine is a not aggressive she said based her opinion on my age (46) and the fact that I am premen, that she would do everything I possibly could. Apparently CMF is less toxic which also means fewer ses down the road. She also recommends that I eventually go on tamoxifen as well which is for premen and is very common when you are ER+. If your cancer is more aggresssive which on the other thread that I was on there were a lot ER-PR-, & HER2+ or extensive node involvement. Also much greater ses. So from the sound from everyone on this thread, this one is longer but much easier. I had my 1st treatment yesterday and I worked out in the yard today! No nausea and no problem in the bm dept (I know, TMI)!
Go to MyBreastCancerNetwork.com. They seem to be pretty clear on all the cancer treatments.
Everyone on here is so helpful! Thanks and today I am in a much better state of mind myself just since I joined this morning!
Susie
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Cascader .... hey gal ... your certainly not alone in your thoughts. I stayed with a group of gals (all of whom we're on the yucky stuff, and wondered why not me from a chemo group from Jan 08) I was the only one of 22 ladies on CMF. I did have node positive 3/34 as you can see in my diagnosis line ... but the big thing .... Grade 1. I live over here in Poulsbo, had my chemo in Bremerton and did use SCCA (Dr. Linden) as my second opinion. I was told by both onc's I would get the biggest bang (so to speak) from my buck from my hormone suppressant treatment and for me radiation (as after my mastectomy the margin at the chest wall wasn't great).
I realize there are so many decisions to be made and we all are trying to educate ourselves the best we can. After two opinions, I decided to go with the CMF (which was suggested by both onc's) and has been proven to be a great treatment with alot less potential for long term problems. Yes it tends to be a regimen that last for atleast a couple months longer than some .... but in truly is tolerable.
I know your head must be spinning ... we've been there and will be here if you have the need to vent. IMO .... the decision making is about the toughest part of the journey.
Carol
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Hi everyone, had my second neuprogen shot today. achyness in body and bones. i have learned from this illness my body doesn't tolerate pain very well. today i am taking two ibuprofen and 1 325 mg vicoden. together they make the aches tolerable. my white blood cell count was 1.3. hoping by chemo on friday i will be back up to over 4.0. i also was recommended cmf by SCCA. i was originally set up for a clinical trial that involved tx and something else, but they came back and said i wasn't a high enough risk. i don't know what my grade is. will ask my oc on friday. i'm glad to hear all of you gals being in charge of your own treatments. for me, i felt my oc and surgeon were far better educated than i, and i bonded with them really well, so i just went with what they suggested. but that's just me.
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Hugs SusieQue...I hope you're feeling less achy before the day is over!
I was stage 1 but grade 3 and I still did CMF. I had no node involvement. I think all oncologists have differing opinions on CMF versus AC or other treatments. Many of the women on my mother's side have heart problems. AC is very hard on the heart. My onc did not hesitate to go with the CMF and the fewer side effects.
It's errand day today so I need to get off this computer and get moving or the day will be over and the errands will not be done. I leave them until I have a list that's a mile long because it's not my favorite job. LOL
I'll be back later. I hope that everyone in treatment is doing well today. This is one tough group of ladies!
Rita
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Cascader/Bolerodiva- Sorry you guys have to be here but as stated everyon eis very helpful. I just completed 8 rounds of CMF. Had the C thru a drip and MF push. I got thru it with very few SE. Fatigue was/is the biggest issue. I still have a full head of hair, I felt queazy only a few times. I had no node involvelment, Stage 1, grade 2, ER/PR+, Her2- and on oncotype of 15. My onc asked me the day I finished how I felt about the length of time it ook to get thru the CMF. It was long, no doubt but it did go sort of fast. I began just before Halloween. My blood was always good and survived witout getting sick. Even had the stomach virus go thru the house. The main issue I had was developing an allergy to the "M" but that didn't happen until my 7th treatment. So...I did get almost all of it.
Went to the BS today and everything looks good. I will say, she did a fantastic job on my boob. she cut around the ariola so you could barely see it. The cut under the armpit is about 3 inches. I try to avoid looking there but decided to last night. She has me going for a mammo tomorrow before I begin rads in 3 weeks. Happy she sprung it on me last minute so I don't have much time to stress about it. The funny thing is that my tumor never showed up on my mammo.
Colleen- wishing you all the best today. Hope your surgery went well!
Thanks for all the congrats! I'm done I'm done!
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Path results in and it's BENIGN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Doing the happy dance here!
Thank you all so much for the support; it's been a long two weeks!!!
Score one for a "pre emptive" strike against BC...........
As to the CMF topic: I researched pretty exhaustively, all led to its being the same in effectiveness as the AC one. However, due to positive nodes, they sometimes want to hit it faster? It seems to be up to the onc, but CMF has been shown in long term trials to be exactly as effective in the long run as CMF for keeping it all away. Since my MIL passed away from complications of AC, I'm not a fan of it. She was one of the unlucky ones to have it affect her heart. However, if neupogen had been around then, they feel it would have saved her.
Personally, I did the CMF, found it quite tolerable, (esp. with these wonderful gals to find info from and tips) and the six months kind of flies by, esp. as you feel quite well during the "chemo holiday" which is what we call the time after the txtmnt week and before the next. I also liked the idea of a kind of long term antibiotic so to speak, rather than a shorter, harsher version..to me, it made more sense in keeping things in a non cancerous state for a longer time.
I'd talk about your oncotype and see what they say: if CMF is a good option for you, I'd sure reccomend it. You can live your life with it, vs. really being clobbered by the txmtn. however, I'm sure both work!!! Which is the point, right?
Hope all in txtmnt are hanging in there....this is still our "lucky" thread, gals.
xoxo
a
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to Scarp:
CONGRATULATIONS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
A BIG WAHOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO
YOU ARE DONE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So proud of you, you did it!!!!! My tumor never showed up on mammo either, gotta love those MRIs! They save lives!
have a beautiful day, Scarp!!!! Wahoo for you!
xoxoxo
p.s. Colleen, thinking good thoughts and sending prayers to you...post when you can and let us know how you doing!
xoxoxo
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