CMF Question
Comments
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I am a veteran of CMF or "chemo-lite" as it is known.
My only extra advice would be not to plan too much in your life for the last few sessions and the 3 wks after #8. I was tired; really tired. It did help when I pushed myself to go for a walk. Maybe it's just me. I did get "hit" pretty hard in the bloodwork reaction. I gave myself Neulasta shot the day after CMF. (I am an RN)
It was considered "edgey" when I chose CMF for small half cm invasive tumor in 2003 with no nodes.. But I sought aggressive advice from sloane-Kettering and they rightly steered me in the direction of CMF b/c my small invasive tumor was TN and highly aggressive. I am exceedingly happy that I went that route.
Get a bone scan when you are done with CMF. I developed osteoporosis so I went on Boniva. Now I take the Evista IV once a yr. Besides bldg bone; it helps prevents breast cancer recurrence.
CMF has been around for a long, long time. So I was very secure in the safety factor. I did not have to worry about cardiac problems or leukemias. I consider myself fortunate to have gone thru CMF; now that it is 7 yrs later. It was a good choice.
Best wishes to all of you!
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eileen - thanks so much for sharing your experience and great news. I can see how it makes you progressively tired and walking definitely helps. Hurray for 7 years!! That is such a great story.
I was told to take 600 mg of Calcium and 1000 iu of Vit D two times per day. The Vit D is no problem but the first calcium tablets were so large I was almost choking on them. I then got chewable vit D, but they taste awful. Does anyone know of a good way to get Calcium down?
Have a super fantastic Sunday!!
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bean-glad to see you are on the move through chemo. I'm also glad to see that your Onc is allowing, recommending vitamins. My Onc says "NOTHING" when I asked about Vit D etc... She will only allow a daily vitamin. As our bodies are being depleted and battered by chemo, I am concerned. I know many cancer centers have nutritional and dietary programs that work hand in hand with chemo.
I'd love to know whether any of you are taking supplements to help support the immune system during and after treatment. Speaking of nutrition during chemo and after, I just got "The Cancer Fighting Kitchen" cookbook by Katz. It is fabulous (and gorgeous), has lots of things I already love. I'm off to make some curry hummus!
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Hi DesignerMom - I was told to stay away from Vitamin C because it can destroy the chemo chemicals thus rendering them useless. They also said to stay away from other antioxidants in any large amounts for the same reason. Of course these will be present in some foods in normal, small amounts which as I understand is not a problem. Mega-dosing Vit C or antioxidants while taking chemo is counterproductive. Funny because antioxidants are thought to help prevent cancer and boost the immune system.
I'm not sure if the doctors in Washington State are more likely to recommend vit D because we have we have one of the highest incidents of breast cancer according to the cdc. Here is the link:
http://www.cdc.gov/cancer/breast/statistics/state.htm
I had read that WA rates may be higher due to less sunlight therefore less vit D, and the fact that women tend to have children later: http://www.seattlewomanmagazine.com/articles/october04-1.htm
Here is a good article on Vit D and Cancer: http://www.vitamindcouncil.org/cancerMain.shtml
Anyway, the oncologists in this state who I have seen seem to think Vit D and Calcium are good for bc patients. Also the surgeon who did my first lump supported use of Vit D.
I'm not sure what to do to boost immune while on chemo. I definitely feel it's affects and I've read that getting a lot of protein is important. My battle plan is Calcium, Vit D, at least a gallon of fluids each day, lots of fiber, lots of prunes, and lots of protein, 30 to 60 minutes at least walking each day, and lots of prayers for all of you and for me. My appetite has remained about the same so I have been able to eat most foods. I don't eat sugar and try to avoid white bread. I also rest when I feel that "crash" coming on...
We can do this!!! We can do this!!!
Love and hugs to all my BC friends. Thanks for your help!!!!
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beanius; I always found the soft gelcaps of calcium (with D) easier to go down. Esp with a milk chaser! double whammy then.
Okay. I'm curious. Why do women in Washington State have children later in life? Hate to sound like an elitist NE snob but I thought WE were the ones who but marriage and kids on the back burner while we pursue careers. This is I what I get for not traveling around the country enough. It's on my "bucket list" en route to an Alaskan cruise someday.
One factoid I do know is that Northeastern Europeans (Irish, Welsh, Scots, English) all tend to have vitamin D deficiencies w/o supplementation. It's just wired into us as an adaptation to drizzly climates. SEattle. I hear, is known for coffee shops in a drizzly climate.
Also for reasons I do not comprehend, Native American from COASTAL areas are vit D deficient. I'd love to understand that correlation. You'd think coastal people would get more sun?
good luck to all. It really helps to have a sense of humor; and I am not making lite of anyone's CMF journey. this is serious stuff but it helps to have a chuckle now and then. eileen
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eileen 1955 - thanks for the gel cap advice, that sounds easy. You asked why WA women have children later in life and I really don't have an answer. I'm from CA and have been here for 5 years - just long enough to not get enough vit D from the sun and develop BC - ha, ha! I say that, but really who knows what caused it? I'm 52 and never had kids. It was always something I though about but put off and then lost interest all together. I thought it was a California lifestyle thing - tee hee! Seattle and the coast is nearly always drizzly, cold, no sun, no vit D, and we affectionately call the people from the coast, "Coasties," and "Latte Sippers," there are espresso booths literally everywhere you turn. Seattle is also called the Emerald City, it is truly beautiful and has a lot of nice people. I go there for my cancer care and for the most part have been treated so well.
Good luck to all from me too! If I know it is all very serious, but if I couldn't laugh I would go crazy!!
P.S. I saw my oncologist yesterday and she said if I haven't lost my hair by now I probably won't. It all still looks the same to me. I had my second MF infusion and just have 5 more days of cytoxan pills to conclude round #2!! I got really constipated so my oncology nurse told me to take sennekot every day since I have to take zofran every day too with the cytoxan. My oncologist suggested trying half a zofran (4 mg) and see if that works so I"m trying that today. All this shall pass and so will the constipation!!!
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Beanius: My regimen is slightly different than yours--I take Cytoxan pills every day for 6 months and have infusions of Methotrexate and 5FU every Friday. I have 1 1/2 months to go! I took Senokot for the first month or so, but it didn't work well for me. I was also taking iron supplements so that confounded the issue. About 2 months in I switched to Miralax which increases the water in your stool making it easier to pass. I still have issues because the tissue is very sensitive, but it's much better. I just wanted to let you know that if one thing doesn't work, you can try another.
Regarding hair--I have a ton and always have, but over the last two months I have definitely noticed more falling out esp in the shower. No one but me has noticed and the only thing I notice is that the part in my hair looks wider. Very few women lose all their hair with CMF.
Glad things are going well--before you know it, you'll be done.
Hope everyone is enjoying the week. It's getting hot again in Seattle--our second wave of summer!
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codavis - Thanks for the miralax suggestion. I will try that next - yippee! Big congratulations on only 1 1/2 months left - that is so great, you must be delighted. I'll be doing this through Nov. Glad you kept your hair too and glad Seattle weather is nice this week. I was just there yesterday and it was a beautiful day. BTW - I met a nice woman yesterday at the treatment center in Seattle who was 5 years out from chemo, rads, tamox, etc. She was getting an infusion of something to prevent bone problems. She was so sweet and encouraging about the future and she looked great. We will get through all of this!!!
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Yes, Beanius, you are right! You gals WILL get through all of this and life is good after the treatments! Hugs to all of you!
Rita
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Beanius-Love your new Ex Lax avatar! Boy don't I know the constipation feeling. I just finished chemo #4 today. Once again I discussed the terrible constipation chemo connection. This time she said to be proactive, don't wait to get bound up, take things ahead of time. I know this is completely logical, but I guess I would always wait for the problem and THEN start working at it. Duuuh! So this time I took one Colace the night before chemo. Today, the day of chemo, I will take Colace X 2 and also Miralax (great, totally tasteless, non gritty, put it in anything). Tomorrow I begin Zofran so I think I will again do Colace and Miralax. And of course I am upping the veggies, fruits etc... I know I will have this routine perfected.....just in time to finish chemo. Glad you got some sunshine in your 'hood. All my BC friends (oh I just realized I mean British Columbia) say it has been a very gloomy, rainy summer.0
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ritajean - thanks for the encouragement!! Much needed!!!
DesignerMom - Yes, now I'm just taking something every night. I was trying to keep regular with salads and prunes, but something went way wrong this week. I think the extra strength exlax is too much daily, but it sure did the job when I got backed! I think sennekot (same ingredient, but lower dose) should get me through 4 more days of round # 2. Then I get two weeks off! Round # 3 starts Aug. 31. Sept 14th I'll be half way through and that's just a month from now. Congratulations on getting done with # 4!!! Hurray for you! You are getting so close to DONE!!!!!! Before long this will just be a clogged up memory!! I'm so happy you are getting through this!!!
Hope all are doing well. Many hugs and much affection to my BC (and BC friends) and Happy Friday the 13th!
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Finished tx #7 last Mon - #8 this coming Mon and I'll have finished 4 sessions of CMF (total of 6 sessions/12 tx). On the downhill side - whoopee!! Hair is thinning quite a bit and am wondering if I'm going to make thru the end with some hair. NP at Onc's ofc recommended Aveda products; they have a powder that really helps lift the hair. Also tried Nioxim (hated the smell). Getting by so far, but I'm not sure my hair's going to hang on til the end of chemo. Any graduates out there who can tell me how long after chemo until hair starts regrowth and how long it takes? No longer taking any anti nausea meds (other than that given on chemo days) - they are what cause the constipation!! A dose of Miralax here and there gets me through, but haven't needed any since session #3. Onc gave me Ativan this last session to help with nausea. Think it helped curb it a bit. Everything else just didn't do any good. Getting to the end, though, and I know it's nothing I can't get thru. I count my blessings as I have had no bad SE. Thanks for any hair advice. My thoughts and prayers are with all of you as go thru this journey of beating breast cancer. Good health to all . . . . . . Beth
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Beth - Gigantic congratulations on getting past #4 and only 2 to go!!!! Hurray, Hurray!!! Sorry I have no advice on hair as I'm just finishing # 2 and all my hair is still with me. I didn't like Nioxin either so I'm using Cal Ben 5 Star shampoo: http://www.calbenpuresoap.com/shampoo.htm and Pantene conditioner. I won't know till later if this works...I also don't know how soon it grows back. I have a wig and hats in case my hair goes. For fun one day I wore my wig over to my neighbors and they didn't even notice!! Congratulations again to you as you get near the finish line.
Wishing a wonderful day to all!! ~Beans
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Ritajean- You are my healthy, happy smiling face at the end of this journey. We all want to be you! Thanks for the ongoing encouragement.
bethcat- A big hooray and happy dance as you finish up this part of your treatment. About the hair. I know a lot of ladies like Nioxin, but it has sulfates and I am allergic to them. Before BC I had some scalp issues, tried everything, nothing worked. I finally started using an Omega3 hemp shampoo with no scent. My hair and scalp have been happy ever since. I continue to use it now during chemo, still have all my hair. I don't know if it is the shampoo or luck. I think the more gentle you are, the better. Avoid hot anything, dryers, hot sun on scalp etc... There is actually a new strategy called Penguin Cold Caps which prevents hair loss through a strict routine of frozen caps during chemo. It works for some of the harshest chemos. I didn't want to deal with them as CMF sometimes doesn't have the hair loss. However, I think the principles might help us too, things like cooler washing water, no dryers etc... Good luck.
Day two after chemo, doing okay, just tuckered out. I think I was overly confident yesterday having a spicy Mexican salad for dinner after chemo. I had nausea for hours and woke up at 4 a.m. and threw it all up. Felt better then. I won't do that again!
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DesignerMom - I'm sorry to hear you got a little sickie. After my last CMF tx on Tues I was having stomach problems in the evening and thought I might throw up. I decided it was okay if I did. I took an ativan and laid down for a while and the feeling passed. I had also gotten overconfident with my diet that day - peanuts, popcorn, piroshkis and a lot of travel. Mostly my appetite is fine, but there are a few things that don't appeal at all. My DH likes to watch the food shows and some of the things they cook are looking totally disgusting to me. I think the spicy food is really hard to take right now.
Regarding Penguin cold caps, I had looked into that and decided against it for myself. For one thing it looks like a lot of work bringing in coolers with a number of caps to the treatment center. I think I'm too lazy for all that. Then I was worried that (Murphy's Law) the one place I'd get cancer cells floating around would be my scalp and they wouldn't get killed by the chemo there - probably just superstition on my part, but who knows. At my first CMF treatment I asked the chemo nurse if they ever use them there and she said the doctors there don't advise them because the chemo might not get to all the areas it is needed. I've also read that the doctors and treatment centers just don't like them because they are a hassel, and if one patient is using them and another sees that patient it brings up a lot of questions and more hassel. Who knows, last I read they don't have FDA approval yet. I'm no expert of course. So I'm just rambling about it because I had thought I might use them. In the end I decided against them for myself. I'm too lazy and too much of a hypochondriac. Okay I will stop rambling now....
Happy Happy Happy Sunday to all!!!
P.S. I changed my avatar from ex-lax to a cute little bunny. I'm trying to improve my image so people won't think I'm a nut (but I am - tee hee).
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BTW DesignerMom I love your avatar. That's a good one!! Hope you feel great today!
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Beanius- I have talked to several ladies who used those Penguin Cold Caps and it is a LOT of work and commitment. They have to change them repeatedly during TX, carry them in dry ice, not wash hair often etc... Like you, with CMF I didn't want to add to my work load. If I had to take Taxotere (where they have some known permanent hairloss), I might have made the extra effort. I am thankful CMF was a good choice for me. I certainly give those ladies a lot of credit. I guess the inventor of Penguin Cold Caps is trying to get FDA aproval. I think someone said they were standard care in some places in Europe provided by chemo centers. By the way, I love your nuttiness. Please don't become to PC on me! Hang in there my friend.0
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Thanks everyone for the advice on hair loss. I very much appreciate your input. Today I just had my 8th tx (4 to go - yippeee!!!) Asked my onc, too, about hair loss and he says I should be OK; that the loss should lessen some now that I'm nearing the end of chemo. He also said that the hair will start to grow back right away once I'm finished, but it will take about 3 months to get back to where I was. I can handle that. Best wishes to all . . . . . Beth
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bethcat- Congratulations! You are almost there!
I have a question for some of you CMF veterans. Why do so many of us have different regimens (number of treatments). A friend of mine is getting CMF x 8, every 3 weeks. When I asked my Onc why I was getting CMF x 6, every 3 weeks she said studies had been shown it worked as well. I know some ladies are on the pills and infusions I think weekly? Bethcat seems to be getting 12. What's with all the different ways of giving CMF. Were there any studies?
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Designer Mom....I don't think there are any long-term studies on more than 6 CMF treatments because this has only become popular in the last two years. The 6 CMF chemo treatments...given 3 weeks apart and by IV.....are the standard regimen in the past. There are several studies that point out that 6 CMF = 4 TAC/AC, etc. in effectiveness especially for early stages of bc. I think the variation depends upon the oncologist. My oncologist does not believe in "over-kill" by chemo, which is why I did the 6 CMF instead of a harsher regimen. Since it was tried and true, we went strictly by the standard.
Other oncologists prefer the new pill + IV, while others think that more IV treatments are better. I have done alot of research on CMF and have never run across any studies that state that the pill + IV or the additional IV treatments are more effective than the 6 treatments, so I've decided that these differences are "doctor related." If anyone finds any research to the contrary, I'd really like to know!
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I've wondered the same thing about the different CMF regimens. Mine was 6 sessions (each session consisting of tx once a week for 2 weeks then off 2 weeks). Suppose 6 sessions sounds easier than 12 tx. I'm going to ask my onc about this and why treatments are different. Thanks for bringing this up. Beth
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ritajean- Thanks for your well-researched feedback. It is comforting to know that the 6 treatments I am scheduled for are "enough:". CMF is very doable, but after 4 treatments I am SO ready for it to be over! By the way, for any of you who have chemo constipation issues. This time I was very proactive, took Colace regularly before chemo and on days I was taking Zofran. I did take one Senokot on day 3. I guess it's like plumbing. If you wait until it is really plugged up, it's hard to get things going. I also have been eating tons of apples with the peelings on, I think that helped.0
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DesignerMom - thanks for asking the question, I've wondered and just put my faith in my oncologist to know what to give me. I envy the six treatments, because in all I'll get 6x2 MF infusions and 14 x 6 days of pills to take. I though maybe she gave me the pills to take myself because I'm a control freak, or something. Or maybe it's a form of penance??? I can't say it's that fun giving myself poison pills every day, but I am in control. Anyway, today is the last of the cytoxan pills for round # 2, so I'm officially 1/3 of the way through. It's really not too bad, so I hope the same goes for the rest of this chemo trip. BTW - you have much prettier legs than me - snicker, snicker.
ritajean - yes, thanks for clearing up the question!!
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I researched this back in 2000, and can't find my stuff..
I found that taking the cytoxan in pill form was better than
the IV..in the studies. I had the regimen of six months...
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Hi everyone!
Just back from my trip to Italy---had a wonderful family vacation.
It is funny how there are so many different ways of giving CMF. I was given 8 tx with a tx every 3 weeks. When I tried to stop after 6 tx, my onc, who is well known and well regarded in the medical community, told me that she was not comfortable with 6 even though that is what they routinely use in the UK, because all of the studies were for 8 tx. Figure it out. I think that at some point we just have to trust our doctors and not to second guess them.
Have a nice day all
Mandy
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Mandy, happy to hear that you had a wonderful trip!
Hope everyone is doing well on their treatments......I had 6 tx, all IV once every 3 weeks. This was the recommendation by my onc and I had to trust him
! I know how hard it is to just trust and never ask questions....something I've never been able to do. My prayer is that all of us are doing enough ! Personally, I've left it in God's hands! 0 -
Beanius; I use the Vicative calcium chews, and now many stores selling their own versions of the chewable variety; I use those too; I usually buy whatever is cheaper, sometimes it the Viactiv if I have a coupon.
My hair is still thinning, and I think it started shedding at a faster rate in the past 3 weeks, but it's also grown during that time. I had my hair cut short in April, before I started the chemo, and just had it cut again today. It looks thicker now that all the short hairs are blended in better now. I really noticed the thinning in my bangs, so I had those cut shorter this time.
I go for #8 on Tuesday.
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mom2acat - thank you for the calcium advice...I will look for those when I run out of these awful ones...everything is tasting kinda bad lately which is strange for me as I've always had a great appetite for just about everything. Last night I couldn't think of anything that sounded good for dinner so I just ate a little bit of a few things. Also strange because I'm inbetween rounds right now, I guess it will take more days for the stuff to clear out before I start round 3 on Aug 31. My hair is still all there. I'm so sorry yours is still thinning, but glad to hear new hair is also growing. Also glad to hear it looks thicker with a shorter cut. Wishing you best of luck with #8 coming up!!! How are you feeling aside from hair? Hope you are feeling good. Today I feel better than yesterday.
Happy Friday to all my CMF friends. Hope you have a wonderful weeeeeeekeeeeeeed!! ~Beans
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Mandy, welcome home..tell us about your trip...pix?
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Hi Lisa!!
Thanks for asking---the trip was great! We were just in Italy for 10 days which I divided into 2 cities--6 days in Rome; 4 days in Sorrento. We did day trips from Sorrento and went to Naples for pizza, stoping at Pompei on the way back. In Rome, we did a little tourist stuff (Vatican, Coliseum, etc) and then did fun stuff (bicycle built for 4 in the Borghese Gardens). My kids knew Italy so we went to restaurants selected by my older daughter who is a "foodie." All in all it was a great family trip.
I have some photos and if you want to see them, private message me your email and/or facebook.
Hope everyone has a wonderful weekend.
xoxo
Mandy
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