CMF Question
Comments
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Hi friends,
Thank you so much for your prayers...I have an interview this week, so we shall see what happens.
Carol, I think all of us have been through very similar emotions after finishing treatments. Very normal!!!! Allow yourself to grieve and come to terms with the incredibly difficult journey you have been on. This too shalll pass (believe me, it will
) Being put into instant menopause (me too) is really tough too, and they don't really warn you ahead of time of what may happen. You will find ways of dealing with the hot flashes, v-dryness, lower libido....) Also, with time, these symptoms will definitely gets less intense (mine over the last month have done so--yeah--this too shall pass!) You will get your "groove back" girl! So be kind and patient with yourself. You are wonderful, lovely lady and you are going to get through all of this too! Hang in there!Annie, you always make me laugh!
Love to you all,
Ginny
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Thanks gals for once again bringing on the words of encouragement. Here I read about the possiblities of having some "funky" feelings once txts we're complete, but you know I read about nausea, yada, yada, yada, and never really had any big concerns. I'd have to say that this last bit of mental/physical problems did catch me a bit off guard.
I do understand that this is "normal", although it still doesn't mean that I have to like it. As Annie so eloquently said, that is why we're here dealing with the ups and downs one day at a time together. I can't agree more !!! You know if we we're dealing with any other type of "disease" of sorts, do you really think we would have a forum like this to let it all out on a daily basis with? I will count myself so lucky to have this group of great ladies to call friends, and Ginny, I agree, this too shall pass, you know its like after a diagnosis, you just want to have everything go in fast forward, and that is not how life works !!!
Harley, thanks so much for the lovely PM, it truly makes a difference to hear from you.
Carol
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Hi all,
just a quick note. Saw PS tonight and the drain is finally GONE! Have to stay on the antibiotic, but at least nothing is attached to me anymore.
And off to bathtime madness with me. (the kids that is...)
-julie b
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Julie...Isn't it surprizing the things that make us excited now? Drain removal..........YEAH! Freedom!!!! I'm so glad things are looking up for you now! Enjoy those little ones! They grow up too fast!
Rita
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Good AM ladies!
OH JULIE WOOOOOOOOOOOOOO HOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO
You are on your way, gal!
Hi Rita, Harley, Carol, Jill and Ginny! Carol, I am hearing it takes about 3 weeks for the fish oil to go to work on those achies. You are in my prayers for that to leave!!!
Guys, I finally gave up on the calcium supps....too many tummy issues. I am going with a 450 mg. of calcium and an 800 mg. of D all in my One A Day Women's Bone and Breast health which I can tolerate fine. With a glass of milk (300 mgs.) a yoghurt (400) mg. I can easily make my "quota"....thought I'd stick that out there for anyone else having issues with these supps.
I toast to you all in fish oil (burp, yuck).
love you all
Annie
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Being raised on the river must be the same as "never forgetting how to ride a bicycle." I don't burp that fish oil at all!!! LOL
A good day to all of you.......
Rita
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Hi ladies, hope you all are well today!
happy Halloween! I shall get my "great pumpkin" out of wraps soon I hope.
has anyone of you gals had ladybits issues? I have been on this lupron 3 months and it's like I have a UTI, (yet I don't) all the time. Grrrrr. Is this part of menopause? What fun, we're aren't even back in the saddle yet around here and we sure aren't going to if this keeps up.
Do any of you use any kind of gel etc.? I know we can't use any type of estrogen cream, ring, etc. or estrovent, but there must be something we can use?
I would ask my onc but I am honestly too embarassed!!!!
I turn bright pink.xoxo
annie
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Annie
Sorry about the UTI type se... I had my share of these kinds of problems, before the D & C, at first, I just had alot of discharge, and then the spotting started...
I was using Replens for awhile, and it seemed to help a little with lubrication. I stopped using it when I had the se's which led to the D & C back in August.
I hear you... it's still not back to normal yet. I also can't talk to my onc about these 'female' things... Back in Feb., I mentioned it, and he was really NO HELP... then I heard him laughing about it with my pcp dr. on the phone, while I was in her office... it was on her cell, so I couldn't hear what he said. I don't know what to do, since I can't talk to my onc. about it.Hugs,
Harley
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Rita,
The training has been cancelled for tomorrow, for Reach to Recovery. A lady just called me, and I forget her name, but she said that she will call me next week to re schedule my training. They didn't get enough people interested in volunteering, so she said that she will try to do another training session in the Myrtle Beach office, and that will be better for me anyway, since it's closer.
Still, I had wanted to get started helping others.
Harley
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Harley, thanks hon, yes, it's so embarassing...as tho our hooters weren't already all over the map!
Just found out I do have a UTI, but the symptoms are abating....my OB/GYN wanted me to take Levaquin whiich has a slight side effect of death, hives, shock etc. when i looked it up....I do not think so! Said I'll pee in a cup at the oncs and risk turning bright pink and get something else! Honestly. Maybe it'll go away on its own with cranberry juice.
I hope you get your training worked out sweetie, good for you to help others, you are a peach.
xoxo
annie
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Harley....so sorry that the training has been delayed but if it's going to be rescheduled closer to you, that is great. How far are you from Myrtle Beach? I love that area!
Try the K-Y ultra warming gel. Believe me, I've tried about everything! The "estrogen be gone" really plays havoc with us, gals! What's worse.........nobody takes us seriously!
Sorry about the UTI, Annie. I'm like you. I always hit the cranberry juice pretty hard and it usually works.
I can't believe that I actually got off the golf course and it was beautiful out there! I'm sure this isn't going to last!
Everyone have a Happy Halloween and a good weekend.
Rita
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Well, I had a
Urethral Caruncle
Which happens with no estrogen..it itched and was very dry..I thought I had a UTI
so my GYN, my oncologist, my PCP and my urologist all had different opinions on
what to do with me on Arimidex...so finally they all agreed to have me put just a small
dab of premarin cream on a cotton wad and put just a tiny bit on my urethra once a day
for a week and then twice a week til it went away.. It did work..but I mean I used the
smallest dab in the world...
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Annie,
Maybe it will go away all by itself. I took Levaquin once, and had no ill effects from it, if I remember... except the usual... diarrhea that wouldn't quit! I have since learned to be vigilant about taking pro-biotics while I'm taking antibiotics, as that seems to keep those se's at bay.
Rita,
I live about 20 miles from Myrtle Beach; I'm approx. 3 miles North of the NC/SC border. I live just off Route 17. I think that it's a good thing that the training will be held at a closer location for me, but I hope we can do the training soon.
Happy Halloween to all!
Harley
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Hi gals!
I hope you all had a great weekend. I played golf on Friday. Golf in Illinois in November....it doesn't get much better than that.
Have a good Monday!
Rita
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Hi Ladies,
We had a rather lazy weekend, ran a few errands, dinner at some friends, and other than that, spent alot of time indoors as the weather was rather wet and windy.
So bummer Annie on having to deal with a UTI. I'm knocking on wood as I type, as I have never had to experience one. You know a little vodka in that cranberry juice is pretty tasty !!! My fil who comes over for dinner often enjoys a cranberry spirit. Hope that your over the hump with that one.
Rita, so what the heck is "warming" KY ??? I've not heard of it. Hmmm, with my last post, sounds like its something I should be looking in to !!!
So how was the game on Fri? We we're hoping that it would have been decent to golf ourselves this weekend, no such luck. We're heading to AZ on the 20th and are hoping to be able to stay on top of our games. Unfortunately it took about a week for my elbows to stop aching after our last outing. My hope now is that the warmth of AZ will be just what the doc ordered !!!
I'll be trying to catch you at home here in the next couple days.
Harley, hopefully you have a PCP that you can ask and get answers to those "female" related questions. I wouldn't be overly comfortable chatting with my onc when it comes to some of the more intiment things, but fortunately my gyn doc is extremely easy to talk to.
Sounds like you geared up to get started with the Reach to Recovery training, hopefully they get it rescheduled soon.
Julie, hoping your continuing to heal up, and feeling stronger every day.
So I am happy to report that I have not noticed any problem with taking the fish oil supplement in regards to tasting it. Unfortunately I have been taking my array of supplements for a little over 2 weeks, and I havn't noticed any relief to my achy joints. I'm still keeping my fingers crossed that some relief will be in sight.
Jill, we're heading your way on the 20th of Nov for 10 days, would love to see you !!! I'll be trying your home soon.
Time to veg with DWTS ... pleasant dreams all ... Carol
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Carol,
Have you tried Glucosamine, Chondroitin, & MSM? I used to use that every day, during the winter, when I lived in Maryland. It helped the joint aches I would get in my fingers during the cold winter, and I would aggravate the condition by trying to carry ALL my grocery bags in at ONE TIME! I would hang them off each finger, while carrying them in to my house. I know, pretty stupid!
Anyway, that supplement really helped me, and I think I may go get some more, to see if it will help with my neck. It still hurts sometimes, and I blame it on the Tamoxifen.
Hope you get some relief soon! If you try that supplement, let me know how it works for you. Oh, and I think that you need the one with MSM, because that is a natural anti inflammatory!
HugsHarley
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Hi!
I am going to begin CMF next Tuesday (November 11). Outside of avoiding alcohol, I would appreciate suggestions for getting me through this. I am going to try to do it IV since I would prefer to not have a port.
At what point does the hair thinning happen and should I have hats? wigs? for it. I have thin hair to begin with. Any diet suggestions. TX 2 is the Tuesday before Thanksgiving and I surely hope that I will be able to eat my dinner.
Thanks for your time.
Mandy
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What? We can't drink alcohol?? I too am trying to avoid a port....we should keep our fingers crossed! I ditto all of Mandy's questions!
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Methatrexate is hard on the liver so no or low alcohol is the best. My friend from the UK had methotrexate for psoriasis and had to drink ginger ale at her local pub rather than her usual pint.
Mandy
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Mandy and swm63
Welcome! Sorry you had to join us, but so glad that you did!
I'm sure the others will be along any minute with some very good advice. I thought I was going to get CMF, but my onc vetoe'd it. Instead, I had 4 txs of Taxotere and Cytoxan. Anyway, the ladies here are so very nice, they sort of adopted me, so I'm an honorary CMF gal!!
Good Luck to you! Post here often to let us know how you are doing, and ask any questions you have...
HUGS
Harley0 -
Hi Mandy and SWM and welcome to the CMF thread. Although none of us really wanted to be here, I think you will find the ladies on this thread to be very informative and helpful. We CMF gals have different symptoms from those doing other chemo treatments.
First of all, I did not have a port either. I had 6 CMF infusions...spaced three weeks apart and made it through very well without a port. How many total treatments are each of you having?
As for the hair, I noticed a little hair loss a few weeks after my first treatment, but really noticed more loss a week after my second treatment. I had no need for a wig or hats. I lost enough hair that I noticed and my beautician noticed, but everyone else thought I looked just fine. In a way, that's a disadvantage because then everyone things that you ARE just fine and sometimes we need that extra emotional support from those closest to us! I purchased the Nioxin hair products. They made my hair appear fuller. I kept my hair long but we layered it a bit more to give the illusion of fullness, too. I have never heard of anyone losing enough of their hair on CMF to have to go to a wig, hat, or turban. There will be a few days after your shower when you will really begin to wonder but the loss tapers off gradually.
As for diet....eat what tastes good to you now but do not eat your very favorite things right after a chemo treatment. Some gals have found that they later associate this food with chemo and can not eat it any longer. It helps to have some protein the night before chemo. I think you'll be able to eat turkey on Thanksgiving, Mandy.....just don't overeat! Stock up on lemon drops. They help cut the "chemo" taste in your mouth. You will probably discover other things that help you, too, as we are all different.
I purchased Biotine mouthwash and toothpaste and used it faithfully all through the chemo journey. The chemo drugs make us very susceptible to mouth sores and thrush, but I managed to keep them away by using this toothpaste and mouthwash and by chewing on ice chips during my actual chemo treatments.
Drink lots of water to flush the chemicals through your system. I did have a few drinks during chemo but VERY FEW.
You can do this, gals! Most of the CMF gals even continue to work if they work outside the home. In fact Carol is our poster gal for CMF. She breezed through the CMF.
Post often and we'll help you with any questions that you might have. We'll help you through this!
Rita
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Thanks Harley and Ritajean. I think the anticipation is pretty scary. I appreciate your time.
Mandy
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Mandy,
You are so right. This whole journey is very frightening. However, there is no need to fear the actual treatments. Once the IV is inserted, you just sit there. Some people even sleep, watch TV, read, talk to others, or listen to music. I think your side effects will be minimal and you will quickly learn how to minimize them.
Are your treatments every two weeks?
Rita
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Hello to SWM63 and Mandy ... you've come across a great post to help get you through the ups and just few downs of doing CMF.
First off, are you both doing it solely with infusions, and no oral meds??? Secondly, having a port works pretty good if you did end up getting one. I would put a numbing cream on mine and never even felt the slightest poke. Being a needle wimp, it helped with my anxiety level.
I'd also suggest taking something for nausea before it may appear. A drug called Zofran worked well for me, and does not cause drowsiness so if your planning on working through your txts it works well. I know other have had good luck with Compazine as well.
Now on to a problem I had a bit of a time dealing with and that would be constipation. If you do have "issues" Miralax (OTC) seemed to work well. I had to do some regulation of dosages, but by my last month (6), I finally had it !!! I would start taking a little bit of it atleast a day prior to infusion day. I was on a regimen of 14 days of oral cytox so I tending to use it for a couple weeks at a time in small dosages.
As Rita said, yes our hair did thin, but did not fall completely out. I do have a friend here locally that is in month 4 of CMF and she definitely has lost much more than I. I'm not trying to bum you out, but we all are different. Thumbs up on the Nioxin, biotene, chomping ice and drinking a TON of water.
I asked point blank to my onc about consuming alcohol, and yes the methotraxate is a tough one on the liver, I went cold turkey for the first 4 months, and then had a couple glasses of wine atleast 10 days after an infusion with my onc's blessing while on vacation. Yes, I did feel good enough to take a vacation during this txt regimen.
Back to the water thing, I drank atleast 80 ounces of water a day, remember I was taking meds for 14 days straight and was on a mission to flush my body. I don't know if I was just lucky or what, but I was able to work full time at a fairly physical job, I continued with most of my everyday activities, yes, there we're some nights when I felt a bit out of whack, but heck as far as hearing the words chemo, and what most would envision, THIS IS VERY DOABLE !!!
Remember that anything is fair game here ... if you have questions, fire them off ... someone is usually here to respond probably on a daily basis. These woman are of great support both emotionally and with a wealth of information.
Harley, I'm tying to give the supplements ample time for success. My gyn did suggest the G w/C and MSM, years ago I tried using that for some sore knees (yikes that was a lot of years ago), I did not have much luck with Chondroitin and those two Italian friends of mine "Consti" and "Pation" !!! Trust me gal, I'll be trying something else here soon if I don't stop hobbling around !!!
Okay, just during the time I have typed this post my phone has rung 3 times with political recorded messages. Should be interesting tonight ... I hope I'm not as bummed as I was 4 years ago !!!!!!!!!
Night all, Carol
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Hi all, and welcome to Swm63 and mandy; ladies you have come to the right thread and not only that, it's a "lucky" thread.......we have all done very well, Carol is our poster girl for getting thru chemo without a whimper and Rita is our great advice and the voice of common sense and our cheerleader on here.
I made it thru all 8 txts with a loss of about 1/3 of my hair. Yup I bought a wig and a bandanna in the pre chemo "freakout" and no, I never needed either of them. I have alot of hair and only i saw the loss tho my shower drain (OMG, do try not to pay too much attention to it) you'll be convinced that you'll lose all your hair, but you won't. Just do like Rita did if it's long, or like Carol did if it's short, and you'll look adorable.
I never got any nausea at all, only one time was it just this side of feeling as tho you did when you were pregnant, that kind of "sick around the edges" bit. I was considering taking a pill which I had filled just in case, but it passed off with good old lemon drops (thank you Rita)
Not only are you going to be just fine (we are mostly done on here) but you will be supported, loved and comforted all thru it. There are angels on this thread. And you know who you are: Carol, Rita, Harley, Jill, Julie, Ginny
Everyone gave you such good advice, the only thing I can add is to follow it! Love the Nioxxin stuff and the biotene got me thru also without a care. Nary a mouth sore. I even had a root canal during CMF. My onc was the No Alcohol guy, but he does tend to be very very cautious, I think what Carol did is perfectly fine. She even walked in a marathon!!
Hey, Carol, honey, the fish oil takes 2-3 months to work apparently. but good news for you is did you read this article they are highlighting on the website about no pain, no gain with AI's and Tamox? Apparently women that get the "achies" and hot flashes etc. on these drugs are the ones it works for!!! 40% works for!!! So you are having these symptoms for a great reason, hon. I had NO symptoms whatsoever on Tamoxifen (am the extrogen queen) and lo and behold, it did come back. So I think there is something to this.
How are all of you lovely warrior goddesses? I love you all and as always, my hat's off to all of you for being so great and supportive. You are all wonderful.
love as always
annie
p.s. Just saw the PS and oh lord, I can now sleep non propped up. Yahoooo!
pps: O Rita, you crack me up! I love the "warming" KY commercials too. That ain't happening until I get a "cherry" on top of my new foob unless I can find a pretty sexy nightie that one strap come off and one stays on.....VS here I come.
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Thanks to all you great ladies and the wonderful advise. I am tired of everyone telling me that I am taking chemo too lightly and that I am taking chances with only doing CMF. I've been told by many that CMF is the outdated , not used anymore, and only for the old and weak. Anyone have a comment about that?? I was under the impression that once I made my decision that everyone would be supportive, why is it that those who have no earthly idea have the most opinions???
Rita, glad to hear you made it through your tx without port, I will find out tomorrow how many doses and how often.
anniealso, just got off the phone with the wig lady, she wanted to know if I wanted the wig I had ordered when I too was in a tizzy about the chemo thing. Told her no and boy did that feel good!(she said if I ended up needing one she could get it in 3 days)
carol, so sad to hear about the no alcohol thing, was hoping that it would help me get through this whole process. I am not a lush or anything, just a drink or two on the weekends with dinner. I pray that the chemo acts like my pregnancies did and I won't want it at all.
Once again thanks to all, and you better believe I will be asking you guys all sorts of crazy questions. Friday is the big day and I feel better about it already just from reading your posts!!
Shari
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Shari, I have to pipe in on those saying that CMF is outdated ... yada, yada.
A little background ... I started yakking on line here with a bunch of gals and we all starting our chemo regimen from Dec to Feb timeframe. I was to start in Jan. Here I noticed out of about 20 ladies, I was the only one doing CMF. I started questioning in my mind if I was getting the chemo that I needed. Long story short, I opted for a second opinion at the Seattle Cancer Care Alliance which is highly regarding in the Seattle area.
Bottom line, I was "highly" recommended by them as well to do CMF. I was told that I had "garden variety" cancer, meaning ... ER/PR+, Her2-, Grade 1, as I notice you have as well. CMF has had very good success rates, is not so hard on your heart, and is tolerable. Yes, it has been around for much longer than some of the regimens that are now being so frequently recommended, and it has some good data from all of those years. Unfortunately the regimen usually takes a longer period of time to complete than some of those other more toxic regimens. I was on a regimen that lasted 6 months, with 2 infusions per month. I truly believe you don't have to go bald and look like hell to feel that you are doing the right thing. So why was I singled out to do CMF, from looking at the others diagnosis, others we're ER/PR+ and Her2 -, but we're also Grade 2 or 3.
My friend here in my hometown also got 3 opinions on her chemo regimen. Two we're thumbs up on CMF and one suggested TC. She is now getting ready for month 5 of her CMF txts, and counting the days until she'll be completed.
Not that you are doubting your choice, I thought my story was worthy of sharing and it might reaffirm your thoughts just that much more.
Lastly, I'll be the first to admit that I was totally bummed about the restrictions of alcohol. I had often enjoyed a glass of vino with dinner, I did notice that my taste buds and tummy we're not always up to snuff, and that I actually did not miss that lil' nipper as much as I thought I would.
Rita, what can I say ... some people that have come into my life have that "special somebody" persona to them, you are one of those people. I'm sure you have friends that have told you how lucky they are to have you in their life, I count myself as one of the lucky ones, albeit long distance. I sure hope that the Reach for Recovery program can hook you up with a gal in need, they will be so fortunate to have you on their side.
Annie, okay ... I'll try to remember when I'm hobbling along to the potty in the morning that my body is really working hard to keep me NED !!!! Oh, and I won't give up on the fish oil ... I actually havn't noticed any se's from taking it, ie ... no nasty taste in my mouth !!!
High Five ... on getting more comfy all the time with the new foob!
Off to Yoga ... Carol
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Thank you so much everyone for your encouragement. My onc was concerned because of the 24 weeks for 8 doses of CMF...she said that alot of people get tired of it and don't make it to the end, and that is why she was originally pushing CT. I fit the profile that Carol described and feel that for me CMF is the right choice. I just hope I am as good as you other ladies and get through it.
My onc is planning to have me do my radiation after dose 2, during doses 3 and 4, I believe. She said she'd drop the M during the radiation period because it could cause skin discol0ration. So, on April 5th, I should finish my basic treatments and will be on to some kind of hormone therapy. I am a world class coward and hope I can live up to the way you other ladies have handled things.
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Hey Sharrie
Just an aside; I don't know where those people that told you CMF is "outdated" etc., got that, but it has recently been proven to be "as effective as shorter term chemotherapy." and that's from the ACS. It has the exact same success rate 10 years out. My onc advised the ACT regimen initially for me, do you want to know why? Because he said "you'll be done sooner". AGH. It takes a man to think efficiency over beauty, right? Well, you'll be gorgeous and you'll take a little longer but by god, the job'll get done just fine.
Alot of people take "breaks" in alot of these treatments, sometimes from low blood counts (where they just give you a shot) sometimes to complete other regimens such as radiation, etc.
It's OK if that happens, and we all finished. We all cheered each other on during it. You of course will get thru it. You will do great.
Listen, we are all chickens here, but in the end, we all faced it, and finished it and here we are all still yakking away. And we'll be here for you when you face it and finish it. It really is very doable and as Rita says (you'll find we all quote everything she says), we will be very thankful to be able to do this CMF regime as unlike the harsher chemos, we get to keep our hair, our eyelashes, our eyebrows....unfortunately, because we usually look OK, we sometimes don't get the support we need from our near and dear, so speak up ahead of time.
Nobody facing bc is any kind of coward. You are strong, you are brave, and we are all here to hold your hand.
Hey Carol, good for you for the yoga, they did not give me and the barbie boob the OK on that yet (no stretches for two more weeks, arghhh) but when I can, I'll be doing that. I thought that you might like that article, it's good to know when you have the achies that it's all for your benefit anyway.
Hi to all, have a great night! love ya gals
annie
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P.S. Ginny, what happened with the job?
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