CMF Question
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I don't remember my exact dosages. I had six IV infusions....once every three weeks. After my fourth treatment we broke for radiation. Then I came back and finished my last two chemos. I certainly didn't want to come back and do those last two! I guess all oncs have their own ideas on what works best.
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I don't remember my exact dosages. I had six IV infusions....once every three weeks. After my fourth treatment we broke for radiation. Then I came back and finished my last two chemos. I certainly didn't want to come back and do those last two! I guess all oncs have their own ideas on what works best.
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Swm63 ... I was on your regimem ... 6 month and 12 infusions ... Who knows???
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That is a good question. I thought I would be going in every three weeks (taking the C and the M orally) BUT I am going in once a week for the M and the Fu (love that) in IV and taking the C orally. Mine is for 24 weeks! I think the dosage is figured out more by weight and then the doctors recipe. My oncologist uses CMF because she said it is less toxic - I guess that is relative - it feels toxic when the nurse gets a special chemo gown on to give it to me! LOL! I am happt that the infusion is pretty quick so I should be able to get my kids to school, get to treatment (includes a ferry ride - which will get old) have treatment and get back to be home close to when the kids get home.
My oncologist often splits it into two 12 week cycles and puts rads inbetween. I need a reexcision for clear margins so am doing the 24 all together (assuming my blood work looks good and I don't get too sick). Radiation wil follow my surgery,so it will be one long 8-9 months for me.
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Thank you guys for your information. I guess there just isn't a set course of tx. I will be asking onc. tomorrow when I get #6 about why he chose the 12 every two weeks instead of once every 3 weeks. I would love to know if we are all getting the same dosage every time!!
scarp and aprilgirl1.............how is the hair loss for you? Mine seems to be soooo much, but I don't believe anyone else has noticed. If it continues I believe I might cut the treatments short and pray I am doing the right thing. If taking CMF only increases my chances of survival for 5 years by 3-4%, then cutting out the last few treatments shouldn't matter that much.
Anyway, thanks again guys and good luck to all !!!
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Swm63 - I am on a trial I go every 10 to 11 days for 8 tx. I cant' remember the exact amount that I get. I should they read it to me every time, but I guess i don't pay that much attention, which I think I should. I know that they push the M & F and the C is a drip.
I am almost back to being somewhat of my old self so at least I will have the weekend to enjoy. We are going tomorrow night to see Phantom of the Opera in NYC. That was my sons Christmas present. He is so into Broadway. I was not sure if I would feel good enough to go but since I am feeling so good today I should be OK. My mom had her first tx today. She said it went well. I could tell she must of been pumped with the steroids because she sounded like me after my 1st tx. She wanted to go to lunch and she was very talkative. I am just praying that she has no SE's. She is so great!! Well hope everyone has a great weekend. We are suppose to be in for some snow this weekend in NY. I just hope that if does that we get snow and not all the freezing rain etc.
Be Well,
Colleen
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swm63 - I just started yesterday, but my oncologist said hair thinning. I will let you know what that means when it starts happening! She did tell me not to color my hair during chemo which should be interesting. I have dark hair - lots of gray under that color! She mentioned she had heard that some women do okay with non amonia, non toxic wash out type of color.
Has anyone colored their hair while on chemo?
TIA
Susan
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Susan: My onc also said not to color my hair. I have had 4 tx and my hair has thinned out a bit, but everyone says they do not noitce it. I also try not to wash it everday and to stay away from the blow dryer and all that other stuff. I only use the blow dryer when I am going out somewhere. This is the one good thing they say about CMF is that your hair only thins out for most people.
Colleen
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My onc. said the same thing about no coloring, but my stylist said it is no problem to color. The onc. said the reason for no coloring was due to the fact that you might not get the color you asked for. Stylist said that was a crock. I would tend to believe the stylist b/c that is her profession. Hair is definitely thinning, just a little too much for my taste.
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Hi
After how many treatments did you notice the hair thinning. My hair is very thin so I am hoping not to lose too much, but I have only had 3 treatments so far.
It is interesting how every onc has their own way of doing CMF....or at least it seems that way. I will find out about my dose the next time I go...I never thought to ask.
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Hi chickas!
Just checking in while I can grab the computer to see how everyone is faring in the new year. Welcome to all new gals and lots of hugs of my buddies...So glad to hear that all are hanging in there. Rita, I am so sorry you've had a sinus infection. My hubby is a martyr to those and we have had the most great luck lately with using a saline solution to rinse his sinuses out and keep them clear. It's truly helped him. I hope you are feeling better now.
Jill, how great to hear from you....I am sending lots of good thoughts and prayers up for this txtmnt to kick that cancer crap right out of the ball park....this will be the "crusher" txtment that does it, I just know it. You sound wonderful.
Harley, I am sorry your fur baby isn't well......I had the same issues with my Dudley, he would cough and sneeze when stressed. is it possible that your fur boy grooms excessively when upset? I remember he is long haired, that was the issue with Dud. We also gave him something we had worn when we left for the day to snuggle up to and a stuffed toy that he liked. It seemed to help with the obsessional grooming and the stress. Good luck.
I can't really help too much with the dosage stuff for you new gals, I know I had had radiation before and chemo was all that was left to treat me with, so chemo I got. I also was in the grey area, a little bit further into the worse side, so I opted for CMF. Never had nausea at all, but I sure had a cabinet full of stuff just in case.
I noticed the hair thinning in buckets after #3. It fell out like crazy, but I have a massively thick head of hair (or did, before). It's growing back now in kind of a gollum style, very interesting crew cut underneath and longer strands on top in a combover effect. I should have just cut it really short, like Carol did, but she looked utterly beautiful, of course, doubt I would have looked that great. I also got told by the onc not to color. His reason was that it's too much stress on the root, and you don't want to yank it, brush it too hard, wash it too often. Treat it gently. I air dried alot and wore alot of hair clips. No one ever even noticed, I was just neurotic about it. No one has still ever noticed. I guess it was only me. It was my biggest freak out, and it came to nothing. I had even bought a wig and a bandanna in the pre freak out. Never even needed them.
Anyway, back to the packing....daughter back to school sunday (waaahhh) and MRI next week, so a bit freaked on that arena. Last years' MRI was a nasty surprise, but thank god they found it.
Am figuring that with the date (1/15) and the time 1:15, perhaps that's a lucky day. Since my birthday is 1/14, it should be dammit!
. altho, 53 is getting on there, yikes!!! I should try to act my age on of these days I suppose.Love to all, and hang in there gals, you are getting thru it and becoming vets!!!
p.s. Colleen, prayers for your mom going out as well. Hope she continues well.
xoxo
annie
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swm63-I have had little hair loss so far. I did notice more after #3 than usual. It seemed to slow down. I notice mostly in the shower. I try to not wash it everyday but having thick short hair makes me look like Gumby in the morning. My stylist did not notice any hair loss when he cut it in Dec.
Just have to hope it doesn't get worse! I plan on buying the root comb in stuff today and will get it colored once in about 3 -4 weeks. Hopefully that'll hold me til the end(mid-March).
Susan- I feel fortunate, the hospital is a 5 minute ride away.
Colleen -Enjoy the show. It's great!
Anyone going to do the Avon walk in October in NY? I think I'll sign up. I'm sure that I'll be able to raise a lot of money!
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Good morning gals!
Just had to pop in and tell you gals that I had my beautician color my hair all the way through chemo with no problems. I figured that the color of my hair would have been equally depressing as the chemo if I didn't do it.
Harley, is Spike doing any better? We are planning a trip west in late May and early June. My cat does not travel well but I have never left him alone this long. I have a good "cat sitter" who comes in once a day to feed and play with him but I'm already beginning to worry about the stress factor. Boarding around other animals would even be worse.
Annie...53? Wow! You're still a "young un!" Celebrate! :-)
So Colleen.....how was The Phantom? What a wonderful Christmas present!
Well, I need to find some food so that I can take my meds. I have so many fever blisters on my poor nose that it's nearly three times its original width. That's not good when you have a short fat nose to being with!
Have a good day everyone.
Rita
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Just a quickee ... before starting something for dinner ...
My two cents on the hair loss ... I personally freaked after I think it was infusion #2 ... thought I was going to be baldacious within a few days. Thankfully it slowed way-way down. If I pulled at the back of my head towards my neck yes I did get many strands at a tug. Decided this was not a good thing to be doing ... throughout the 6 months of txt, it definitely was at its worst in regards to thinning at the beginning (like at the end of month 1 and into month 2) and then it seemed to mellow out quite a bit until the very end. Once everything was said and done, my guess is that I may have lost about a 1/3 of my hair.
Now not that any of you would really want to know this, but my friend here in Poulsbo who just finished her CMF definitely had a bit more than thinning going on. Goes to show ya that we're all so much the same in this big BC world, yet so different. BTW, she looks very cute with her new short "do" !!!
Susan, are we doing good ??? Keep pumping those fluids gal ... I knew if you fired a question off to the gals you'd get some feedback !!!
Rita ... yuckers friend ... but really, a short fat nose ??? I don't think so !!! Hope you knock that darn infection out soon.
Annie, miss ya ... Im thinking you all need to put another "puter" on your Santa's wish list for next year !!!
I'll be back over the weekend, probably should start rumbling around in the kitchen !!!
A pleasant eve to all, Carol
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Hi to all,
I've been a bit absent. Work has been absurdly busy, kids, life etc. So far no infection from the surgery and I hope to get the stitches out end of the week.
But rough weekend- my father in law passed away Saturday night. He had been in declining health, but it still was sudden. My husband is quite broken up and it was very hard telling the kids their grandfather had died. My 6 yr old "gets it" and it was hard yesterday watching him process it. He kept asking if we would ever go to the house again, what would happen to the wheelchair etc. Services will be this week.
Will pop in again when things calm down a bit again.
-julie b
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good morning cmf'ers - hope everyone had a good weekend. I know I can't track all on this board, but remember a few:
Julie - so sorry about your FIL. That is a sad loss, and I know what you mean about 2009.
Harley - hope Spike is better - I love my pets (kids too, but that is a different thing!)
Everyone else - so I made it thru the first 5 days pretty well. Of course, I am on the weird schedule so I am thinking it is a lower dose and I will have progessively worse SE.
My only real SE is vertigo first thing in the morning. I have never had it before but when I get up my head and/or the room is SPINNING. I haven't gotten sick, but that could do it. I will call my onc. nurse to report it, but curious if anyone else has experienced that. If I'm not careful during the day and bend down fast (picking up toys) I get it mildly, but not like the morning.
I have no nausea, and quite the appetite in spite of the slight metallic taste in my mouth.
Hope everyone here is doing well.
Susan
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Oh Julie....I'm so sorry to hear about your FIL. Hang in there as you go through the motions of this week. Although he is gone and will be dearly missed by all of you, you will still have your memories. Nobody can take them away from you and your family. HUGS!
Susan..wow! It sounds like you're off to a good start. I can't help with your vertigo problem as I didn't experience anything like that but maybe somebody can pop on and offer help. When is your next treatment?
I'm still trying to fight off this wicked sinus infection. It's pretty nasty stuff! I think I'm in for the day so I'll check back later.
Rita
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Hi all:
Julie, I am so sorry about your father in law....I know he had been ill, but it is always hard, and hard to explain to kids. He will always be a part of your family. When our daughter was small and we lost my grandmother, we told her there were little parts of her in each one of us, so that no one ever is really lost to us. She liked it alot to think of it that way and I believe she was about 7 at the time. I am sending hugs ( ) and love to get you thru this time.
Hey Susan, I had some vertigo. Of course, when I called, they said it wasn't related to the chemo, but when I spoke to the nurses, they said, yeah, ears get stuffy and that causes it. Tthey did tell me to drink more water.
Rita, I just PMd you sweetie, and I am sending my love and good vibes down the wires to feel much better very soon. Short, fat nose? Baloney, woman, we should all be so lucky to look like you do! I'll take your nose over my conk anyday, swollen, or not!
love to all, we took our Aurora back to college yesterday, so while I now have computer access (ta dahhh) am missing her bright light sorely today.
Hi Carol! Hi Harley! Hi to every one else also!!!! I am de treeing so best to get back to that and keep my mind OFF the MRI on thursday. Send good vibes everyone and prayer for NED and NO biopsies needed for it.
love you all
annie
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I just came back from tx #5 and was disappointed to learn that my blood count was low. The onc said it was high enough to get this treatment, but usually when she sees this it might get lower for the next one. What that all means if the count is lower next time for tx #6 (1/22) I will not be able to get it and then I will be off the trial. I would then be put on every 21 days. I hope that does not happen since I already have so many plans (surgery, trip etc). But whatever it is it is driving myself crazy is not going to help. She also said that since I had a rough time last tx that maybe I had something viral. But I will know when I go back on the 22nd.
Julie - So sorry to hear about your Father-in-law. It is always such a hard time, especially when you have young kids. Mine were also young when my MIL passed. But we constantly talked about all their favorite memories and also had them help pick out their favorite pictures of her and that seemed to help.
Rita: Sorry to hear about your sinus infection and I hope you get some relief real soon. By the way the Phantom was great. I had already seen it, but it was great going with the kids. They loved it.
Well I am hoping the SE will be easier this time around only time will tell. My mom did pretty well for her 1st tx. She didn't feel great yesterday, but nothing really bad. I spoke w/her a little while ago and it is day 5 and she said she is just really tired. I just hope that is all she that happens. I will check back in the next couple of days. Have a good night.
Colleen
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Annie
Thinking of you, and praying for an ALL CLEAR on Thursday's MRI!!
Rita,
Friday, I met with my first referral from the Reach to Recovery program. She is very nice, and it went very well. I hope this will be the start of a really close friendship. She had a bi-lateral mast. today. I called to check on her, and she's doing just great! I am sending her a card that I made with my special Hallmark card making program.
Susan,
Sorry to hear about the vertigo. I hope you are feeling better soon. It is no fun when the room is spinning out of control!!
Thanks for thinking of me and my furbaby.
Spike seems to be doing better, but he still coughs a little bit, usually around meal time. I think that maybe he really does have Feline Herpes, but since we switched his food, he seems to be doing better. I guess we'll have to go buy some more food in a couple of days, since we only bought enough for two weeks.
Hugs to all,
Harley
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Hi. So much is going on.
Rita...I hope that sinus infection bites the dust. They can take it all out of you.
Annie....I have my warmest vibes going for an all clear on that MRI.
Susan....I don't know about the vertigo...ask your onc.
Colleen: good luck with this tx and hope it goes well for the next one. You are dealing with some much between your health and your mom's health.
Julie: I am so sorry to hear about your father in law. No matter what the age or health of the person, when you lose someone you love, it is always difficult. Their place cannot be taken. My heartfelt sympathy to your husband and you. When we had a loss, we read the book, "I'll Miss You Mr. Hooper." to our children who were then young. It was a Sesame Street book dealing with death and explaining what the loss was. I do not know if it is still available in the stores, but I just googled it and you can get an on line transcript if that would be any help.
I have been a bit out of commission, but I am doing better. I tried some accupuncture which I realize is not on the "list", but it seems to be helping with some of the edema I have been experiencing.
If there is anyone I left out, you are still in my heart.
Mandy
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Hello sweeties;
Harley, thank you so much and Mandy, thank you too in advance for the good thoughts and prayers for the all clear. My insurance was not going to cover it, but my onc went to bat for me, and i got the clearance. Now, the fact that my onc felt I absolutely had to have it, and did this, doesn't exactly make me feel confident, but after last year, i don't think I'd have a safe feeling at all unless I got an MRI. So.........here's hoping. I would really adore not to have my poor kid and my hubby need to deal with this again. It's my wish for the new year for them.
Harley, I'm sorry your furbaby is still coughing....what can they do for feline herpes?
Mandy, I think it was Julie that had some success with acupuncture as well. Good for you for trying it, I would have if i'd thought of it. I hope your ankles are not swelling as much. thanks for the PM, you are a sweetie! Yes, it's very tough sending them back, but isn't that great that you got that extra time! I don't know how some moms cope, with them way across the country, I really don't. I cannot even begin to imagine military moms and what they must deal with on a daily basis. It's so tough, this part of it. I don't wish for the toddler days back, but I am not used to this even yet. Today, my onc told me he wanted his wife to have another baby desperately, that he'd do just anything for another one. Sweet, isn't it? Funny, you never think of men having the empty nest thing, but of course they must.
Colleen, here's hoping it was just the virus giving you a bad time; I do remember one or two times being rougher, then it kind of smoothed into a pattern, or maybe I just got used to it, i don't know.
Outside of the hair thing (and I admit, I was pretty neurotic) and one or two times when I was up most of the night, in retrospect, it doesn't seem like it was all that bad now. I certainly enjoyed the "chemo vacation" times in between treatments and made the most of them. I kept energy and felt quite well during them even at the very end. I remember packing the entire household, driving three hours, shopping for the household solo with 8 heavy bags of groceries and then cooking and I don't recall being too tired at all. That was the second to last one. The final one, 5 days afterwards I drove to my nephews' graduation. I think i was a little tired. It's really quite a doable regime, far preferable to others. I felt very fortunate to be able to do CMF.
I am glad to hear your mom is hanging in there, what a strong lady she must be! She'll do just fine it sounds like.
Carol and Rita, and Jill and Ginny, hugs to you girls.
Whoo! It's cold here, about 7 degrees outside. Yikes.
Well, better sign off and go feed my new nutty furbaby who has this worst habit ever........she hurls poops like discus underneath the bathroom door. We've been howling, but it's becoming less amusing with time....I surely hope this is a phase.
Daughter well at school and settling in............now mom just needs an all clear and 2009 can get underway or at least until march when i pull the plumbing and get another cat scan on the lungs for the nodules that my onc assures me he's not worried about so i guess I should try not to either.
love you all
annie
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Annie
Glad that your onc was able to get your test covered by your insurance. I will be praying you get the ALL CLEAR!
My vet prescribed L-Lysine for Spike. We give him 1 rounded scoop (1/2 tsp.) twice a day. It seems to help. My dh & I think that maybe he has some allergies, too, and maybe that Rx cat food had an ingredient that he had allergies to. Poor little guy! He is a real trooper, though. He still plays and rough houses with his 'brother', Thor, and he seems to be feeling fine. He just has these little episodes.
Hugs to all,
Harley
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Annie, My onc believes that all of her patients should have an annual MRI. So it does not mean anything that your onc wants one for you too. We're waiting for your all clear and hope they give you the results right away.....waiting is the pits.
And Harley, I am glad that Spike seems better. It is so hard when our furry friends get ill ....they can't tell us what is going on and we have to have almost a second sense in order to figure them out....
Cyber hugs.
Mandy
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Mandy
You are SO right! We just had this 'gut' feeling that the food was causing some of Spike's problem.
Annie,
Yes, I wanted to say that your onc probably just wants to be safe, and you'll probably always need to get these MRIs once a year. My surgeon insists that even though I got a bilateral mast, I still need to have 'local' screening, so I go once a year for breast MRI. Better safe than sorry.
HUGS
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Hello Ladies,
Thought I'd share that I had the good fortune of meeting Susan after work today. It ceases to amaze me how we became acquainted by what I believe may have been at Harley's suggestion from another thread. Leave it to the sisterhood of BC.org. I must say that Susan is a beautiful lady with an absolute great personality to match. Susan ... I had know idea that we had chatted for almost 2 hours. With your positive attitude (yeah I know that cliché is overused) and yes, a sense of humor, I truly believe that you will sail through your treatments. I thoroughly enjoyed our visit and look forward to being able to visit again. So did we pick up an organic chicken for dinner ???!!!
Oh, I believe I probably interrupted you as the topic of your vertigo came up. So has that se subsided at all? That is definitely something that I have not noticed being addressed ... maybe you could pose the question under another forum if it is still a noticeable problem, you never know what somebody might come up with !
Julie, boy its never easy to deal with the loss of a love one, and I know how tough it can be to try and make sense of it all to kids. My thoughts are with you and your family.
Annie ... you know it gal ... nothing but positive mojo being sent east for your MRI on Thursday. Shame on your insurance co, someday they will all get a clue.
Colleen, hate to say it, but your story sounds very familiar ... my counts hit the gutter with 2 txts to go ... had to postpone txt ... I like you had already scheduled other appts (for rads), and was hoping to not disrupt anything as I had a vacation planned out. Thinking back at the whole experience, it probably would have been better not to try and plan a vacation within 5 days of my completion of rads. So some would say "live and learn", I'll choose to not have this experience again !!!
Harley ... I believe that your R to R gal is very lucky to have you in her corner. From my experience with you via this on-line support ... you have been more than a blessing.
Mandy, acupuncture huh? So Susan brought the topic up ... being a bit of a needle whimp I'm not quite sure that I could try it without having a bit too much anxiety. Remind me, is the edema a se from bc?
Jill, you know gal I may not say it often enough, but you are in my thoughts quite often. I believe you are preparing to start your txt this week. I hope with all my heart that your se's are minimal and this txt kicks cancer in the ass.
I hope like heck that when Kent and I are back down in AZ this Spring, we'll be able to get together and we'll both be doing well. You know its our turn to treat you both to dinner !!!
Rita, so are you freezin' your bottom off or what ... sounds like there is some friggin' cold weather hitting your neck of the woods.
Did I read that you are heading "west" at some point in the near future ... where the heck are you headed? Is it really west ... or kinda west???
Off to heat up some dinner (Susan ... gotta love Central Market !!!)
Pleasant dreams ... Carol
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Wow Carol, you are good at remembering everyone.
About acupuncture...well I have had a lot of side effects and I figure it is worth tying . I am a world class coward about needles. But the one thing I can say is that I did not feel the needles. I don't know why but I did not feel them. I got the name of the acupuncturist from my internist so the acupuncturist is fully trained in both Western and Chinese medcine. But even if it does not cure the side effects, it is a very calm and focused environment......very different from the medical center where I am treated with the Western approach and feels very soothing to me for that reason alone.
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Mandy ... I'd say that the mental aspects of what we're going through is more than half of the battle. More power to ya gal for searching out and taking advantage of the many sources of healthcare we are so fortunate to be offered.
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CMFers - It was so great to meet Carol this afternoon. I think I could have talked to her for hours!
Carol, thank you so much for taking the time to meet me. It is so nice to have this board for support, information and inspiration. My vertigo is still there but it is only first thing in the morning, so once I'm up it's fine. My nurse thinks I am OVER hydrating - such an overachiever. I am so worried about SE and they said to stay hydrated. After our 2 hour coffee date, I ran into Carol at the grocery store! Yes, I did get the organic chicken, of course.Mandy, my husband has tried acupuncture for "fly fishing "elbow and it really worked. I think it would be a great thing to try. I saw a naturopathic doc for megavitamins while I waited for my chemo decision - I am off of them now for chemo.
Hope everyone is having a great week.
Susan
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Hi Susan,
Thanks for the thumbs up. I don't deserve credit for trying acupuncture. A while back, Juliechicago sent me a private message and made a few suggestions for side effects. One of them was the acupuncture. Isn't it amazing how wonderful our sisterhood is?
Have a nice day all.
Mandy
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