CMF Question

MaryNY

I think I'm dealing with the "shizter load of dead cells"

CurlyGirlNY

Yes, there is blood everytime I blow my nose but I haven't had a full nose bleed. I just figured it's because all mucous mebranes are effected by the chemo. I would be very concerned though if I had full nose bleeds every day. Yours will probably improve soon.

Merilee, can you tell me about the detox you are doing? The onc told me I can't take any herbs or supplements. For now I am just trying to eat vegetables and fruits every day and stay away from chocolate, caffeine, and processed foods. Once treatments are over I want to start detoxing and juicing.

MaryNY

CurlyGirlNY: I probably shouldn't have used the word nosebleeds. I've only had full nosebleeds a couple of times. But my nose bleeds every time I blow my nose. The onc nurse suggested using a humidifier. I have one in my bedroom that I usually run for an hour or two before I go to bed but it doesn't seem to make any difference.

Merilee

Hi Curly

I am using a few things to detox. One is called Lilly of the desert detox formula, I also am taking a product called Colon cleans. I take milk th isle to clean my liver and am drinking cranberry to flush my bladder and a pro-biotic formula to replace the good bacteria in my digestive  track.  I take Iron, zinc, and b12,   to build my blood back up and airborne to build my immune system back up.

Hope this helps.

MaryNY

Merilee: Have you checked with your oncologist about taking all of those herbs and supplements? I'm guessing they would OK iron, B12 and cranberry juice. Not sure about milk thistle. The probiotics would probably be very effective once the chemo drugs are out of your system but wondering if there is a long enough window between treatments for them to be effective. But I know my onc would not allow me to take a multivitamin as it contains Vit C. And I think Airborne would not be advised for the same reason as it has lots of Vitamin C. Vitamin C can render many chemotherapy drugs less effective. I wouldn't want to take something that negates the effect of the chemo drugs.

Merilee

You are right Mary about the Vit c. I only take it for about 4 days when the old Chemo is no longer in my body and the new is not there yet. I stop 2 days before my next treatment.

I have gotten the ok on all of these from my Onc.

Judy1973

Hey girls!  Just got back from my ultrasound (which also included a mammogram at the last minute) and my left breast is STILL healthy without any evidence of breast cancer.  WHOO HOO!  The sonographer didn't see anything, so the radiologist got a new script from my onc by fax to do a mammogram to be sure (as the compression can sometimes make certain things more visible).  He also tried to physically feel it.  So, nothing on physical exam, ultrasound, or mammo!  What a HUGE relief.

Oh, I have the bloody nose thing, too.  I think it's a combination of the CMF killing cells and because our heat is forced air.  I tend to get that every winter (due to the dryness), but it's just a little worse now.  My nose is tender when I blow it, so I'll be happy when my cold is completely gone.

I have to admit that I haven't really changed my diet at all.  I still get McDonald's here and there...drink a cup of coffee or have a soda...and I still eat chocolate.  I've never done any of that stuff in excess anyway and my oncologist and the nurses all said to continue eating as I always have.  I only take a multivitamin...no other supplements.  I have been more conscientious about taking in more fruits and veggies, as I've always been lousy about that, but all in all...no real changes for me.  You girls are really making me think...

cabmom

Has anyone gained any weight?  I seem to be struggling with the weight gain.  My onc wouldn't approve any supplements so I guess all of the oncs are just different and look at things differently.  Judy, happy for you that things worked out great with the mammo and ultrasound.  I'm sure that you were nervous, so happy that it turned out to be okay. 

Merilee

Judy

you have great news! What a relief.

Now you can focus on wellness. I think stress is about the worst thing in the world.

js37

cabmom - are you getting dacradon? (sp?) - it's a steroid, that could be it.  i'm not taking it with my cmf, i get a push of zofran & ativan and then have scripts at home if i need them. 

cabmom

js37, I only got a half dose with 1 through 4 and then they cut that in half for the last treatment....hoping to eliminate it altogether on this last one but I guess we'll see.  I can't wait to start working to get this weight off.......I get emend but no ativan.

Merilee

Am I the only one that likes how the steroids make me feel?

js37

cabmom -  a little know fact about steroids is that it actually stays in your body for a long time, it's stored in fat cells.  so once you stop it, it will still stick around for awhile.  ha, merilee, i think so! ;p

cabmom

js37.....oh no!  I did not know that!  Is there anything that you can do to get rid of it or is it just a time factor thing?  Yeah Merilee....I think you may be the only one !  I really hate this weight gain and I eat nothing and still gain.....YUCK!

js37

my pcp said nope, you just have to wait for it to clear from your system - she told me depending on how much your body fat percentage is, it can linger for up to 6 months.  it sucks.  

CurlyGirlNY

I am so confused. My onc said the only supplements I can take are calcium and Vit D and just recently she ok'd iron. I was told Folate negates the CMF and that I shouldn't have enriched bread, pastas, cereals, or granola/energy bars. As for the Decardron, it keeps me wide awake for a day or two and the whole week I feel extra emotional and will cry for no reason. They've been cutting the dosage so now I'm nauseaus most of the first week, but weeks 2 and 3 I want to eat everything is sight. My weight has been fluctuating up and down but they told me to expect to gain. Also, after treatment 5 I had more hair loss. My hair is baby fine and I do have a lot of it but I feel like it's an uncontrollable mess. I'm thinking about cutting it short short so that when all this is over the new hair can grow in uniformly. Anyone else have hair thinning and decided to cut their hair?

CurlyGirlNY

That's great news Judy73! I am so happy for you! Don't feel bad about the McD's. I still sometimes eat a pint of Ben & Jerrys.

js37

i guess i've been extremely lucky with nauseau and other side effects - mine is completely controlled with the zolfran & ativan push & i've only had to use the scripts at home a couple of times - and i'm not sure if i actually needed them or if i just took them because i worried that i might feel bad later.  but i'm doing a regime that is a little different than the usual cmf iv push then 3 weeks off.  i'm doing the cytoxen in a low dose daily pill & the mf every week over the course of 24 weeks.  so the "cycles" doses of cytoxen most of you are getting is basically divided by 28 for me (as in days) and my mf dosage is what you get divided by 4 (for weeks). it's super low dose.  sometimes i feel guilty, because beyond a sort of "off" feeling i get wednesday night & on thursday, i feel totally normal.  i exercise 5 days a week, i haven't gained any weight, my appetite hasn't really changed all that much, and so far just the usual normal hair shedding.  i'm really hoping it stays that way.

 i went to see a nutritionist who specializes in cancer - she told me that i could eat whatever i wanted, even foods high in antioxident.  even soy, as long as it was in it's natural form of soybeans & tofu (she said to watch the portion size & not to eat every day), but never any soy protein, soy milk, isoflaven, flavanoid...never flax and okay'd calcium w/ magnesium, a multi vitamin that has no more than 100% of everything (not to be taken on mf days), vitamin d3 and omega 3 fish oil - she told me the vitamin d3 & the fish oil actually  helps in minimizing hair loss, so who knows.  although i will say, i've been taking those 2 for awhile now before i started and will say i noticed that my hair is stronger & didn't shed as much. i've noticed it also looks silkier - my hair is fine too.  not necessarily thin, but definitely fine.

 the interesting thing she did say to me was, when i asked about blueberries (since they are antioxidents and i eat a lot of them), that i could eat as many of them as i wanted, but that i should stay away from juice because it's highly concentrated - so like no juicing a glass or no odwalla blueberry fruit shakes.  

it's always interesting what different oncos & nutritionist say  - i feel confident in what she told me because it falls in line with my own research.  there's actually other things that i could still take that wouldn't interfere, but for now i'm not, simply because i'm feeling sort of pill'd out at the moment.  

js37

and curlygirlny - i so know what you are saying about the ups & downs of steroids! i had to be on them for an extended period of time because i had a severe case of pneumonia, and it was the same for me.  i'd get mad at my guy because of the way he sat his coffee cup down, then i'd cry because i was mad at him for a stupid reason.  then would loose patients over the stupidist things and cry at the drop of the hat.  seriously, commercials would send me into an emotional mess.  then i'd get emotional because i was feeling so emotional!  that's when i decided never again to take them.  and they made me gain 30 pounds which were a b*** to get off. 

Merilee

Js

It sounds like you nutritionist and my onc are on the same page, Glad to hear this as it is affirming and makes me less nervous. I have a basic mistrust of doctors from my first experience with a pair of Oncs who where Barbie type air heads. Still trying to get over it.

Now I will say I get weird food cravings from the steroids that remind me of being pregnant. Aside from that they give me a ton of energy and a happy disposition...I guess I am weird or maybe my body needs them...interesting thought

MaryNY

CurlyGirlNY: My onc's advice was similar to yours. Intitially she said absolutely no supplements. Then because my hemoglobin was low, she advised me to take iron. Late she told me to start taking Calcium, then she suggested I take B6 for night sweats. Finally when my Vit D test came back very low, she advised me to take 1000 IU Vitamin D3 per day. I never did take the iron as I suffered enough with constipation without adding that to the mix. But I have been taking Ca, Vit D and B6.

The nutritionist advised me against soy products too. But since I never used them anyway, no big deal for me. I asked about flaxseed, she said no to the oil, but OK to use the seed. In the case of getting vitamins from food, most oncs and nutritionists seem to be OK with that as we are not likely to get megadoses that way. 

MaryNY

CurlyGirlNY: I just remembered we are going to the same breast cancer center (but at different locations) so of course our oncs give the same advice regarding supplements. Did yours test you for Vit D? My score was really low: 18.8 ng/ml. (NOTE) VIT D 25OH Reference range: 10-24 ng/ml - Mild to moderate deficiency 25-80 ng/ml - Optimum Level. The test was in Dec when I was already half-way through chemo. I wish she tested beforehand as I'm not sure whether chemo affected the level.

About the Decadron, that caused a lot of problems for me too, very similar to you - being wide awake for two days then crying for no reason and just being really depressed. Onc prescribed Ativan, which helped both with the nausea and sleeplessness.

Judy1973

You are all making me feel more and more grateful that my oncologist doesn't use Decadron.  My nausea is totally manageable without it so for.  That may not be true as the sessions continue, but I only used one compazine after chemo #2 the other day.  I really just move more slowly the week of chemo, but I fair pretty well all in all.  My weight hasn't really changed.  I do feel like I'm hungrier for some reason (except for the week of chemo, of course).  I do feel frumpier, but that's the fatigue, I think.  I LOVE the days I actually feel energetic!!!

Mandy1313

Hi there!

Last  year when I was on CMF, alot of us were on decadron for a few days after the chemo.  I was told by my onc's nurse to taper when I went off...that is if I had 2 pills one day, then the next day I'd have 1 1/2 pills, etc until I was off the pills. That helped to prevent the "withdrawal" feelings that some have.

As well, sorry to bring bad news, but a common side effect of CMF chemo is weight gain. If you google CMF chemo and weight gain, you will find any number of articles and studies about this. The good news is that you can lose the weight. Since September, I have lost 10 pounds and I only have another 10 to go.  So it will take time, but you will get your former self back.

I am from the Northeast and enjoying our enormous snow fall...we had over 44 inches this week.  Now I live right down town and can walk to most places so I am only slightly inconvenienced. Besides the kid in me is happy with the snow.

Hugs to all.

Mandy

CurlyGirlNY

Good news today.  I saw the surgeon and she didn't feel anything but sent me for an ultra sound. They did see a tiny cyst but don't feel there is any reason for concern. I was just scheduled for a follow up and a mammo in May. I think I need a mammo anyway before I can start radiation. So I guess I will relax until May and then be scared all over again.  

Mary - funny coincidence. I asked the onc to test my d level before my last treatment. My neurologist (dx with ms 10 years ago, but haven't had any relapses) requested the vit d test but I didn't want to keep running from lab to lab so I just asked the onc to do it and it was low, 20, so she told me to take 1000 units. I had been taking 1000 plus also calcium which has a little bit of vit d also.  Vitamin D deficiency has been linked to many heatlh problems including breast cancer, ms, and alzheimers but I think it can be toxic so people should get tested before taking megadosages.

Hope everyone had a good day too.

MaryNY

CurlyGirlNY: that's good news that it's just a cyst. I had my follow-up mammo yesterday, as it's been six months since my lumpectomy. I was given the all clear. I was smiling all day after that. Such a relief. I suppose this is something each of us will have to go through every six months.

Another coincidence, I was diagnosed with transverse myelitis (TM) a year and a half ago. Sometimes this can be initial attack of MS, but that has been more or less ruled out in my case. The TM was a factor in deciding on my chemo treatment.

Merilee

How is everybody doing this week end?

CurlyGirlNY

Hi Merilee,

I'm doing well this weekend and I have a week before treatment #6. How are you doing?

Merilee

Wow #6 already! I am doing great and have #3 schedules for Thursday already. It really is going by fast.

cabmom

curlygirlny, we must be on the same schedule.  I am scheduled for #6 on Wed....can't wait.  Hope everything goes well for you.  merilee, hope all goes well with #3 Thursday and hopefully it will continue to go FAST!