CMF Question
Comments
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@SoCalLisa, I enjoy genealogy too.
It's one of the things I'm looking forward to doing more of when I finish treatment and retire from my job. I had some distant relatives that may have lived in the LA area around WWI era, but have't been able to find out much about them yet. 0 -
I startrd with Familysearch.com, then after went to New England to get the hard copies..I found four direct from the Mayflower, and then back to 36 AD..couldnt't get the hard copies back that far, lol :-)
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For real--36 AD? That's amazing. I am black which presents its own difficulties for doing genealogy. Not everyone has a family tradition of oral historians like Alex Haley!
Of my great-grandparents, one appears in the written record out of nowhere around 1867, which I assume means he was born as a slave. The possible LA relatives would be cousins from this branch of the family. One (wife of the above) was an immigrant from England, and probably can be traced further back than I have done as yet. 5 were from Barbados; they have been traced back to the mid 19th Century via Church records which are mostly available on microfilm at the amazing Family History Library in SLC, and it might be possible to get further on them if there are other records to look in, and the last was a free woman of color in Maryland before the Civil War. We have a Bible record for her family of which the first entry is her grandmother (my GGGGG-GM) who died in 1854, possibly at age 84 (info on her age is conflicting), which would put her birthdate just before the American Revolution. One of my ambitions is to put our genealogical research so far into some semblance of order, so we know what we know and how we know it. Also to conserve the family heirlooms properly, and last to do some DNA-genealogy to see whether we are related to others who share some of the rather unusual names on both sides of the family, and also to find out where in Africa our ancestors came from, since it's probably impossible to trace them back by documents.
Have you seen the programs on PBS by Prof. Henry Gates that traces various prominent Americans through paper records and DNA? I found them just fascinating.
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I'm new to the boards. I start CMF infusions on Sept 21 for 6-8 cycles. Not sure what the doctors final decision will be on number of treatments. I have very thick hair which I keep in a short cut. I'm hoping that I wont lose much but we'll see. I'm really nervous about the other side effects because I really need to try to work as much as possible. I'm a single mom w/ a high school freshman and a college freshman.
I have chemo class at my cancer Center on Monday. And at some point before the first chemo session I'm supposed to have my port installed. I have terrible veins so I need a port. I'm not sure the surgeons office will get this scheduled in time but we'll see what happens. Ive read through tons of posts on here and its so helpful!!0 -
Welcome, Lokimax2!
I'm glad you found this thread. I found it so helpful. Looks like we have a pretty similar diagnosis. I did 6 rounds of CMF followed by radiation. I scheduled my infusions on Thursdays and took Friday off and was always back at work on Monday. I also had a port and was glad to have it. My best advice is to hydrate and ask about any side effects you may have. There are so many remedies for side effects. Please ask any questions you have. This is a great thread and you'll get lots of help and support.0 -
Lokimax2- I have just finished round 4 of 6 of cmf. I have continued to work as I am a single mom also. I will PM you when I get home from work tonight. You will be fine. I too had thick hair at the beginning. I lost about 70% of my hair. I am getting the C part in pill form and that is the one that made my hair fall out. Are you getting all 3 by infusion?
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Hi lokimax!
Welcome! I see you're having a port put in so I am guessing that you are getting yur chemo IV like I did. I had CMF for 8 cycles and while I did have some hair thinning, I did not lose my hair. I think I am the only one who noticed the thinning. I was nervous about losing hair and tried on wigs so that I had one which I could order and receive in 24 hours if I needed a wig, but I never did need one. Like everything else with chemo, it depends on how your body reacts to it. Many on this thred did not lose their hair, but some did. Good luck getting your port and let us know how you are doing.
Hugs to all,
Mandy
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Thank you so much for the warm welcome, Mandy1313, Dianarose, Upstate68. Its good to talk with folks who have been through it. Got my call today that my port surgery is Wednesday morning. Chemo is next Friday. will be a busy week: Chemo Class monday night, post-op appointment Tuesday morning, Port inserted Wed & Chemo on Friday. I think my C part is IV, but I'm not sure. He gave me an Rx for anti-nausea and lidocaine for the port, but didn't mention the C being in pill format. I've read that getting the C in pill format tends to cause hairloss but the IV C causes thinning. At this point I'm just hoping that the other side effects can be well controlled so I can try to work. The bills are rolling in now and my last two paychecks were about 1/3 of what they normally are. My 13 yr old son has a b-day coming up in October and then there is Christmas to worry about. Hate for the kids to have their Christmas affected by this. TGIF, tomorrow! made it through my first full week back at work and feel pretty good.
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lokimax2- You should be able to work. I don't know what you do for work, but it sort of helps me feel normal that I do get up and go to work. I only had the nausea(really mild) the first round. Now I only take the nausea pill when I take the chemo pills in the morning. Beware that they do cause severe constipation. I finished round 4 and have 2 more 14 day rounds to go. I will say the fatigue has caught up to me. I went to bed at 7 last night and got up at 5:30. I did have to get up 3 times to go the bathroom (the cytoxin part effects the bladder) and had a lot of hot flashes and night sweats. They are a pain in the ass. I too have a 13 yr old son. He is home in bed today with a bad cold. I hope I don't catch it. I don't have a port. My MO said it really wasn't nessary as cmf is not that harsh on the veins. I just put the lidocaine on about an hour prior to and I don't feel the IV going in at all. How often will you be getting the infusions? The chemo part is the quickest. It takes longer just for the fluids and Zofran to go in. Good luck to you. Diana
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Diana, I'm assistant director of a medium sized non-profit, international adoption agency. So I'm mostly at my desk and up & down the hallway. Its a bad time to be doing Chemo though as its fiscal year end, audit time and re-licensing in two of our three States where we work as well as one two of our Countries. AND we will be moving to a different suite in our building some time this fall. Needless to say, I won't be doing much of the moving stuff--hopefully I can recruit my children to come help me pack up my personal stuff & desk if need be. But as we've all found out there is no GOOD time to do Chemo or to have cancer!
I've read lots about the constipation and bladder issues so I'm gearing up. I already have to be careful for whatever reason I vacillate between constipation and the other extreme in no time! I've had a history of kidney stones so I try to make sure I get my 75+ ounces of water each day....not always successful.
I'm not exactly sure how often I will be getting my infusions. The first one is Friday the 21st. the Port goes in on Wednesday, 19th. The doctor first said 8 and that I could do 3 before radiation, 2 with radiation and 3 after radiation. Then later in the conversation he mentioned something about condensing it to 6. I emailed the patient navigator and asked her how often and she said the first Round will be every 3 weeks then the 2nd round will be every 2 weeks. So, now I'm quite confused. I have Chemo class Tuesday night. So, I'm sure they'll tell me what my schedule is on Friday when I'm there or I'll definately be asking them! I have hard to find veins and so he recommended the port. I also presume the "C" will be by Port and not Pill as he said this should only cause some hair thinning. I understand the Pill version causes more hair loss. But, I'm not too concerned about the hair issue in comparison to the other side effects and trying to work.
I was having bad hot flashes this last year, but they seemed to have subsided after my Ob-gyn said I had to stop my birth control because of the cancer. I just turned 46 so maybe all of this will push me over the edge into menopause. I haven't had a period in 2 months except two days after I stopped the pills. I was on Seasonal where you only have a period every 3 months. I know what you mean---I was soak my t-shirt and pillow multiple times every night when it was bad. So, I presume all that will also return with the CMF and then the tamoxifen later on.
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welcome lokimax2. I am a bit late saying hello. I can only salute you ladies who are working through chemo. I am on a different regimen of CMF (daily cytoxan pills + M&F weekly infusion). Maybe I could work full time along with all that but I sure don't feel like doing it. I've been working only four hours a day since my diagnosis and not at all on Wednesdays since I started chemo. The way I feel today, I'm not sure I will be able to keep up even that reduced workload until I finish chemo. But I am 10 years older than lokimax, and maybe older than dianarose too.
I made the mistake of scheduling a really busy day last Thursday, which is the day after my infusion. I won't do that again! I completely wore myself out and really haven't pulled myself back together yet, even though I slept most of Friday and Saturday and took a nap this afternoon too. Even though I felt pretty much OK until last week (although starting to get a bit more tired than pre-chemo) I am still really dragging today, not bouncing back like I ordinarily would after a very tiring day. Right now I'm just hoping I do finally get some energy back, and don't feel this run-down all the way until I finish chemo in January!
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Curveball: I'm sorry you're having such a tough time. As I've poured over these boards it seems that everyone's experiences are all so different. I am just not sure what I'll do if things get bad and I can't work. Thankfully my parents can periodically come and help but they are not in good health either and live 5 hrs away. I've enjoyed this last weekend before chemo...relaxed & caught up on some recorded shows & got things squared away at home. Take care of yourself and just do what you can. Susan
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@lokimax, yes, you are right. Everyone has a different experience with various parts of their treatment, in terms of pain levels, recovery time etc etc etc. Compared to what some other people, including other CMF-ers, have gone through in the way of side effects from chemo, I don't have it that tough. I've just been so tired the last few days!
I have been staying with my mother almost since I got diagnosed. Poor Mom, she has been a real champ. I am her third child with cancer (although not all three at once), and she has ended up caring for each of us at various stages...post surgical, chemo or what-have-you, plus she was my dad's primary caregiver all through his illness with colon cancer until he died last December. I just tend to revert to a cranky, whining five-year-old when I get real tired.
I should check my red cell count from last week. Maybe I am a little anemic and should eat more spinach.
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Curveball- I am 51. I am tired all the time now. I really have to push myself at work now. I usually work 7 hours or less five days a week. That's all I can do right now. I lost my dad last Decemerber too, on the 17th. I think missing him has been the worst thing.
I had lost my eyelashes and for some reason they are growing back and I am not finished yet.No sign of my hair coming back though. I have 49 days to go. I have been on the anemic side for the past few months. I don't dare eat much with iron as I am constipated enough.
I too am taking the pills along with the infusions. I get infusions on the 1st day and the 8th day of each regimen and 14 days of the pills then 14 days off. Just as I start to feel somewhat better it is time to start all over again. I start radiation in December. Not looking forward to that around the holidays. Radiation made me so tired the last time. It really effectst the red cells.
What stage and type are you? Did you have many positive nodes?
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Diana, I did the regimen you are on..hugs to you
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Lisa- did you lose your hair and lashes? My lashes are growing back. I don't know why. I still have 49 days to go with chemo. It feels good to just put on some mascara instead of gluing the caterpillars on every morning.
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@dianarose--gluing the caterpillars LOL!! Happy dance that you no longer need to put "insect larvae" on your eyelids.
oops, I'll put my signature on this one. I am borderline stage 1B/2A. I had a tumor just under 2 cm and a 1 mm micromet in one sentinel node. Because the micromet is so small, I don't know whether that node is considered affected (which would make me 2A) or not (which would make me 1B). I had MX and enough margins that I don't need radiation, and I'm so relieved about that because I have sort of a rads-phobia that would have made RT really hard for me to face. I did check my blood results from last week and my RBC and hemoglobin are at the low end of the normal range. Unfortunately the iron tabs I have are a combo with folic acid, which my onc told me not to take while on chemo. I think one of the drugs has the effect of cutting off folic acid supplies the tumor needs, but if you take extra folic acid, that negates the effect of the drug. So I guess I will need to eat more foods with iron in them. I hardly eat any red meat, mostly chicken and fish, which probably isn't helping as far as keeping my iron level where it should be.
There isn't a checkbox for it in "my profile" but I am scheduled for 6 months of daily cytoxan pills and weekly infusions of M & F; the infusion coming up this Wednesday is #10 of 26 total.
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Hi curveball!
I am a vegetarian and managed to keep my bloods ok during chemo. Iron is found in egg yolks, green leafy veggies such as spinach, beet greens, and kale, dried fruits such as prunes and raisins--if you will check on line, you'll find lots of ways to supplement your iron level (providing that the chemo is not upsetting your digestion). I ate one egg for breakfast every day and I guess that was enough for me but we are all different. Anyway, it is just a thought.
All the best to everyone in treatment and everyone finished with treatment too!!
Mandy
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Diana,I did lose my eye lashes and about half my hair. The hair that was left was kinda dead looking, but it all came back in later..it was straighter then my normal hair and all came back to normal except for one little group that came back straight..
I did get my lashes back, but shorter..
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Lisa- I lost about 70% of my hair and what is left is like you said, dead and lifeless. Did that hair return to normal or did you have to cut it off like a bad perm and wait for re-growth? How long after chemo did you get new hairs? I am done chemo Nov 5th and want something to look forward to.
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Dianarose: I lost about 20 percent of my hair so it was not that noticible. I used a special shampoo and was very gentle with my hair during chemo. I suspect it did not look that great but I had cut it into a short style especially for chemo and it held up reasonably well. I did not have to chop it off like a dead perm but it had been trimmed twice during my chemo period. In any event, when the new hair came in, it was somewhat curly. I have had very straight hair all of my life and I like the curlier hair. It remains a bit curly even now years later. My eyelashes thinned and while they have come back, they are still not as thick as prior to chemo. Still, I think I am the only one who notices.
Take care. Hugs.
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Diana, I don't remember, sorry..obviously it didn't make a big impression on me, but I did have my hair cut short..my haircutter was used to chemo hair so helped...
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Hey Mandy, I'm just curious. Were you a vegetarian before you were diagnosed or did you switch your diet after your diagnosis? I'm having such a hard time adapting my diet and I know that is important.
Rita
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Hi Ritajean!
I think the main thing is not to worry too much about diet. I have been a lacto ovo vegetarian for about 20 years though I do cheat and eat fish occasionally. The changes in my diet since I was diagnosed are that I eat very little dairy (too much contraversy there) and that I try to eat organic when I can. When I first decided to become vegetarian, I just gave up meat and poultry one day. My then 5 year old daughter was my example...she decided to become a vegetarian and just did. My hubby eats meat but he has learned to enjoy lots of veggies. When I have something like asparagus, I will saute a sliced onion in a little olive oil, add some sliced mushrooms and then add the asparagus. Even meat and potatoes hubby will eat veggies like that. So we end up with lots of veggies.
What kinds of changes do you want to make in your diet? Email me and I'll give you lots of encouragement!!!!
Hugs!
Mandy
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@Mandy1313, Oh goodie, prunes! I like them, and by coincidence just bought a big carton of them last week. Maybe a prune a day keeps anemia away. Fortunately chemo is not upsetting my digestion or appetite much. But I'm not going to eat eggs, I've never liked them. What about non-leafy dark green vegetables, like broccoli? That's another favorite of mine.
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Curveball: animal sources of iron are the best as they deliver iron in the heme form which is better absorbed. Leafy vegetables do contain iron too, but it's in a non-heme form so has reduced bioavailability. So if you want to get your iron exclusively from non-heme sources, then you need to aim for for a much higher daily iron intake because of the poorer absorption.
The thing about spinach being a good source of dietary iron is a popular myth. The trouble is that spinach also contains oxalic acid which inhibits the absorption of iron in the gut. The original belief about spinach being as high in iron as red meat came from a German study in the 1800s wihich had a misplaced decimal point. Then came Popeye and so the myth was born.
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@MaryNY, thanks for the heads up. I will have to aim for much higher iron intake of vegetable iron sources. The only animal sources I can think of are eggs and liver, both of which I detest, and red meat like beef or lamb, which I like but is mostly too fattty for me to eat often if I am to maintain my current weight. I could use extra-lean ground beef in some things I guess. Or maybe I can find a supplement that doesn't also have folic acid in it like the type I have used in the past
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Curveball: I had problems with anemia too while going through chemo. Liver and kidneys are good sources of iron and while I grew up eating steak and kidney pie and fried liver in Ireland, I'm not sure that I'd eat either one here in the US with all the drugs used in animal husbandry as the toxins from those tend to accumulate in the liver and kidneys. Chemo caused me to lose my taste for most food anyway and I ate almost no meat. The oncologist told me to take iron supplements but they further aggravated my consipation issues so stopped taking those. I did eat eggs fairly frequently. Molasses is also a good source of iron -- not sure if you can incorporate it into some of your recipes or just eat as-is (supposed to be good for hair color too, though this might be an urban myth). Try increasing your intake of beans and quinoa too.
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Curveball- I have been eating cream of wheat which has a lot of iron. My levels have stayed good thru 4 rounds so far.
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Had my first chemo today. Port installed on Wednesday. The chemo RNs were concerned that my incision might be inflamed. It was hard to tell with the dermabond & swelling. So they took the cautious road and prescribed antibiotics and used the vein in my hand instead. Hopefully next time they can use the port. I Had several things I was gonna do, but was a bit handicapped w/having IV on top oft right hand--and I'm right-handed.
Also received some Benadryl with the infusion. Found out today my schedule and its dose-dense. I'll be there every other Friday for 3 cycles and them start radiation and do 2 cycles while doing radiation. Then finish up w/3 more cycles.
My eyes are really dry. They tend to be a little dry, so I use the Refresh gel type. Anyone have anything better?
Also have a killer headache and now my throat funny. Not sore but stressed like after having surgery when they run the tube down your throat. Took my anti nausea and will take some Tylenol.
Gotta be back at 8:30 am for Neulasta shot. Didn't realize I would be getting those either util today. Sure hope I can sleep tonight. Port was making sleeping uncomfortable for the last two nights. Gotta leave house at 7:30 as I live an hour away from cancer center. Too early for a Saturday morning!0
