Anyone on just Taxotere and Cytoxan?
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Hi all,
I read something that caught my attention. I therefore bought from a health food store a bottle of liquid wheat germ supplement. Here is what it says. " In a colorectal cancer study, upwards of 67% of patients improved quality of life, longer life, and even had a complete remission using the supplement...those on the wheat germ supplement also slashed their risk of a relapse nearly 80%. There is more: When wheat germ, an all around immune booster, was taken, standard therapies such as chemo were found to be up to 12 times more effective. Patients also suffered much less from chemo;s dreadside effects, nausea, fatigue, weight loss and immune suppression. Thought you might like to read this. Love Birdsong
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Great info. Thanks Birdsong!
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Birdsong ~ I'm curious to know where you got that information about wheat germ oil. Was it from the product manufacturer (like on the label or their website?), or was it more an observation from patients or doctors? Either way, it's interesting. Please let us know how it goes for you. I'm always anxious to find natural products to help with tx SE's. Deanna
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Hi Deanna and all,
Good for you on wanting the the full information. It is from "Forbidden Cure, " by Dr. Benjamin Ross: "A Hungarian Doctor discovered vitamin C and got a Nobel Prize for it in 1937.(That would be Linus Pauling, the soul recipient of 2 Nobel Prizes to one individual). The same doctor also identified a natural cancer fighting compound in wheat germ."Establishment medicine is so hostile to natural therapies, that even winning 2 Nobel Prizes doesn't protect yhou. True, the doctor;s findings were published about 40 years ago by the National Academy of Sciences. That's the top of the line when it comes to scientific prestiege. "But his startling discovery wsa ignored by the medical community hell bent on killing cancer cells with chemo and radiation. "You don't have to pay the price for their tragic greed and ignorance, because alternative doctors found a way to go forward with research on wheat germ."....Then follows what I included above.
Love, Birdsong
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I thought I would give an update on my wife, Christy. Christy just received Taxotere/Cytoxin treatment 3 of 4, 10 days ago. My wife is tolerating chemo very well and the oncs are extremely pleased. Other than losing her hair and a little thrush in her mouth, which was quickly cured with some special mouthwash, Christy is kicking chemo's butt. She has had no nausea, no fatigue, excellent blood counts...no other problems or symptoms. She hasn't missed a day of work or any other activity such as my son's ball games and school functions. It's life pretty much as normal...well, as normal as it can be.
Sure, there are some who have a very difficult time with chemo, BUT not all. My wife believes that her overall general health and fitness level, which is very good, has alot to do with how a person tolerates chemo. Also, my wife has maintained her good eating and exercisie habits since her diagnosis. Of course, my wife is only 40 years old and age also comes into play, as well.
Anyway, I wanted to share this because I want to help those women who may be about to start chemo. It isn't necessarily all doom and gloom. Good luck and God Bless.
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Just stopped by - finish chem 30 apr and rads 2 July, taking tamox now
dlb823....I did gain wt with the chemo...some was the steroids....and I think that some is that it just makes havoc of the female hormones. I gained about 12 pounds....I lost 7 pretty easy, but these last 5 are hard....and I am eating great and running about 15 miles a week and lifting wts.
but my clothes are fitting better....and life is good
hang in there everyone doing treatments....
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HI all, I just have to tell you of an experience I had at "Look Good Feel Good".Across from me was a woman who was going to be starting chemo.I visited with her afterwards and encouraged her to read and listen to the 2 articles that I wrote about above. She had to go to the library to use the internet and at that time I had long addresses to find the articles, not just google and she had no luck, and doesn't use the internet much. I called her yesterday to see how it was going. I told her she could not just use google to find the articles. She said she was just going to use the standard ACT . I asked her what her doctor had said about the options . She hadn't talked with him but just the nurse who said, " ACT is the standard of treatment." I just felt sick. I feel like need to be at an intersection holding up a sign to alert cancer patients to get informed and help their doctors to get informed.Here Dr. JOnes who introduced the A drug 30 years ago is now changing his opinion and others also. Well, I count my blessing every day that this CT is available.I hope you all get a chance to hear the 2 doctors comments that I referred you to in my comments above. Love, Birdsong
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Hi all:
I am day 3 post chemo not feeling great but more on top of things than during my first chemo. The oncologist started me on diflucon before I get sick with a yeast infection ( I have had lots of problems with yeast infection prior to my cancer because of steroid use with my asthma so he thinks it is a good idea to pretreat me.) I am taking compazine around the clock. I did have aloxi pre chemo and the emend for 3 days. I am also trying to keep from getting constipated by taking 2 sennakot twice a day. I think I was so constipated on day five last time that was why I threw up. I am putting tree tea oil on my fingernails and toe nails and so far they look good. I am also eating jello with extra Knox gelatin in it for nail strength. I have learned that I do better trying to prevent the side effects but I do feel like a walking pill cabinet. Agnes
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.Sorry I had a typo in my last message. It should read, "You can now use just google to find the articles. Love, Birdsong
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Birdsong... I've just PM'd you about your post above, giving you a link to some additional information out of UCLA I thought might interest you. Unfortunately, I don't know how to get through to others who are not as involved in their tx decisions as some of us are, especially since I'm not a doctor, nor do I have their entire dx picture either. I guess all you can do is encourage them to get a 2nd or 3rd opinion. But I certainly felt your frustration! Deanna
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Hi:
I had my 1st treatment Wed. It's a wonder anyone survives, lol. I had called the day before to make sure they didn't want me to come earlier and they said no. I show up, then they say I need bloodwork so I had to hang around an hr. after that was done. The nurse couldn't get the vein (no wonder, it was freezing in there). She wanted me to do a port, I said, "no way, I'm only coming 4x". Finally she blew a vein, then had to call someone else. The taxotere went well, but the cytoxan stopped dripping and my friend and I didn't notice. The nurse finally came over and said it was "double-dripping", something about the bags being too close together. So 2-1/2 hrs. turned into 6.
I am doing well. No problems the first 2 days thanks to all the great advice I got here. I swam and walked yesterday. Today I went to order a wig, an hr.'s drive. A woman at the wig shop said she couldn't believe I was doing so well, that she had terrible bone pain after her Neulasta shot. So I gave her the Claritin advice. My head felt terrible today. I was afraid I was going to pass out on the way home in the car. But I had told my friend yesterday to make me walk today so when I got home, she called and we did. Then I went to bed for a few hrs. Felt better after that, but the head pains are back.
I can't tell you all how much I appreciate all the help, time and advice you all take to make this discussion site such a success.
Peeps
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A Happy Weekend to All: hope no one is experiencing SEs that are too bad.
I am off for a little trip to San Francisco. Since I am leaving tomorrow morning and won't be back till late Thursday night, I am publishing next week's list of chemo treatments a little early. A special cheer to all those who are finishing up, including (for sure) lanihardage and Darlene53. A few others are finishing T-C, but still face other chemo drugs. Good luck to you too!
We have a number of new posters who have not gotten back to me with their schedules or an ok to include their names on the list: this includes pageroo, phillydee (who may be finishing this week) gramma23 and Sue508. Lili46: I have dates for 4 treatments but don't know if that's all or if there are more.
Here's the week's list as best as I can make out:
Schedule for Week of September 22ndth:
Monday, 9/22-lanihardage (#4 of 4)
Tuesday, 9/23-Nico1012 (#4 of 8 weekly + other stuff)
Wednesday, 9/24-phillydee (#4 of ?), Sherrie1964 (#2 of 4), samiam (#2 of 4)
Thursday, 9/25- Rickster (#2 of 4)
Friday, 9/26-Darlene53 (#4 of 4), kerry_lamb (#3 of 3-plus other stuff)
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Hi all, I just found this board and have enjoyed reading your comments.
I just finished 4/6 of TC on Wednesday. The cancer was in both breasts so I had a bilateral mastectomy and started chemo about 7 weeks later, will have radiation afterwards.
I haven't had alot of side effects since they found that I couldn't take the Neulasta shots (major migraines) but my levels have been good so it hasn't mattered much. I have found that the more treatments I have the more tired I have felt. I started losing my hair on day 14 and ended up shaving it off just before my 2nd treatment. I feel comfortable with the treatment but the not knowing if it is working or if it will come back is always in the back of my mind.
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Hi Tonda,
Welcome to the message boards. You'll find them a good source of information as well as a place to find people with the same diagnosis/treatment to share experiences with. You are certainly not alone on this journey. Keep us posted on your progress!
Gina
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I agree IndyHusband, It's not all doom and gloom. Like your wife I cannot complain about chemo, I had thrush mouth once and cleared it up with warm salt water and baking soda. I've had no nausea or any other side effects, except for feeling a bit tired on day 4 after chemo but nothing so extreme that I had to spend time in bed, I was up and about as usual and I did experience some hair loss, but still have quite a bit left. Doctors say that with the exception of the cancer I am very healthy, go figure and they call me strong and fit because I did work out before the cancer journey and went back to it as soon after my bilateral mast. as I possibly could. Blood counts have been fine and I've never had a Neulasta shot. I also have not lost any time from work and have kept up with my other obligations. I turned 58 last week. I will have my 4th and final treatment on Oct 7. Good luck to all starting and/or continuing on this journey!
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You are all wonderful and inspirational women... thank you for sharing here. I read this thread as it gets updated although I'm not sure if I'll do chemo or not. If I do, it will be TC per my onc. I await my OncoDX to come back -- seems to be taking forever. It will either push me to do it or keep me on the fence... but I am just not there yet, and it is questionable as to whether I should do chemo at this point. ANYHOW... I have a question about ports. Because I would have 4 tx, the doc wanted the chemo nurse to look at the veins in my arm to see if they'd be good to avoid a port. She said they looked fine. She's also the one, you may remember, who said I MAY lose some hair, but not to go out and buy a wig...
So, a poll, if you will indulge me, of how many had the option of a port with 4 tx, how many opted not to, how it went, if port had to be done, etc.
Thank you all...
Oh, and for anyone who may have been following... I was ultimately declined by the rad onc ("it would not be good medicine") to have Mammosite b/c I'm a year too young. I cannot try for the clinical trial, because if I'm in the 50% that have external rads, I would have to travel too far every day for 35 days to be able to keep my job and my sanity... So I cannot postpone the decision about chemo until after the Mammosite since it's no longer on the table...
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Hi Shari1232 I was told because I'm only having 4 TX that a port would not be necessary unless my treatment plan would change. I've heard other patients say they like the ports better but they were getting 6 or more TX's.
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Lili ~
What do you mean "PMd"? Could you email me? I am at unique@downtoearthweb.com
I am so excited they are doing it at U of Penn. I want to know what's up with it down there and will sch 2nd opinion as soon as you let me know your doctor.
I feel like I am running out of time to decide - it is 10 weeks since my surgery.
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Hi Shari, they didn't really give me a choice, but I didn't get the port. Had no problems with them finding my veins. I had 4 tx.
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Hi Gals ~
Added my profile and my cutest hat, what do you think? It's not you feel, it's how you look, right? (Imagine this without eyebrows LOL)
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Unique, great picture! I haven't heard of any difference in chemo between lobular and ductal.
Shari, I asked for a port because they had an awful time finding a vein for my biopsy -- took 3 techs to get it. I saw a woman at the infusion clinic who had a vein infiltrated by chemo -- not a pretty sight. But doesn't happen to most people. I also had a mastectomy so only one arm to do infusion on.
Welcome, Tonda, and Sandra, have a great time in SF. --Lani
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Hi Tonday
In wondering if the treatments are working I lookat at it a 3 pronged attack :First they hit every cell in your body, then they radiate the site , then they give you a pill for 5 years to fight the cells again, or whatever term you wish to use for those who are esterogen positive. Plus, you will be getting continual screening to detect anything that most people couldn't even dream of having and that digilence will keep you ahead.Then after taking the pill ,by then, if you need something else, there will be an even better way to continue the battle. So arm you mind and spirit with positive thoughts, YOU WILL MAKE IT. Love, Birdsong
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Hello all,
I have been stalking this thread for about a month now. After a bilateral mast in July, I too, am on the TC protocol. My first Tx of 4 was Sept. 8. Like all of you, they are 3 weeks apart. I have learned so much from all of you that I felt compelled to write today and thank you! It occurred to me that there might be many, many others out there who never respond, but soak up all the info they can. Therefore, I thought I should share what I can, when I can.
Shari1232, I did get a traditional chest port for my four infusions. I was scared to death to do it, but it honestly was no big deal- it was fast and painless. I had the one infusion so far and placing the IV in the port was instantaneous and pain free. I had use of both of my arms during infusion, and I don't ever have to worry about my veins being an issue. I really wasn't given a choice to have a port (why, I don't know- I guess I could have said no, but I guess I really didn't know any better...) but my onc did say that she preferred the chest port over the arm posrt because the arm port can tend to have clotting issues in thin people like me. Hope this might help...
Again, keep up the good work, girls. I am not sure you realize how your conversations have comforted and reassured so many women out there that you may not ever know about. Thanks for letting me put my 2 cents in today. I guess now I'm one of the sisterhood...
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Welcome Tonda and Margaret! So sorry you have to join us, but as you said, Margaret, there really is a sisterhood here that you will find extremely supportive in this journey.
Unique... Love the cute hat & photo! By the way, from what I've read here, not everyone loses eyebrows and/or lashes, although it's obviously a big concern. The instructor for the Look Good Feel Better Class I attended singled out a gal who needed brows and did an excellent job with a little stencil and brow powder, which eased my angst about the possibility. You also asked about PM'ing. Next to "My Favorite Topics," there's a bar for Private Messages. It's like a private email for those on these boards, and is probably safer than posting your actual email address, as these boards are not totally private.
As far as fearing a future recurrence, Tonda, I think all any of us can do is seek out doctors we thoroughly trust, believe that what they are doing is the best that can be done, take care of keeping our bodies as healthy as possible aside from the bc (like eating well and exercising), and trust that we are all in God's hands. Beyond that, I know many hospitals, especially those with bc programs, have psychologists on staff who understand bc and can give you specific strategies to cope with fear of recurrence, etc.
Shari... I didn't want a port and was very relieved not to need one. They have to use my right arm now, which has never been my best, but with an occasional 2nd attempt, etc., things have gone smoothly.
Have a wonderful time in S.F., Sandra, and thanks for the weekly schedule... Deanna
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Margaret - I totally agree about what you said concerning these board. I would not have been nearly as prepared (mentally and shopping-wise) if I hadn't read these boards. Thanks Ladies
Susan
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Hi to all the TC warriors!
Some of you may remember me--I finished my 4th and last treatment of Taxotere & Cytoxan on June 4th of this year.
I can also be a terrible nuisance. I saw birdsong's post about "natural cancer-fighting compounds" and could not resist posting a reply. The rest of this post is off-topic, but it might be interesting reading to some of you.
Several of our "traditional" cancer-fighting drugs were derived from natural sources. Here are some examples:
Paclitaxel (Taxol) and docetaxel (Taxotere): compounds extracted from the bark and/or needles of yew trees
Doxorubicin (Adriamycin): an antibiotic produced by the soil fungus Streptomyces peucetius (http://en.wikipedia.org/wiki/Doxorubicin)
Vinblastine and vincristine (Oncovin): chemicals produced by the periwinkle plant Catharanthus roseus (formerly Vinca rosea) which originated in Madagascar.
The rest of this post deals with Linus Pauling and other Nobel Prize winners. The source of much of this info is Wikipedia, which may not be the best place, but it's readily available ( e.g., http://en.wikipedia.org/wiki/Nobel_Prize).
Linus Pauling was the second person to win two Nobel Prizes. As was true for the first person, Pauling's Nobels were in different categories. His awards were the Nobel Prize in Chemistry in 1954, and the Nobel Peace Prize in 1962. Apparently he is the only person to have won two Nobel Prizes that were not shared with other people. Of course, one of his Nobels had nothing to do with his scientific expertise. He won the Peace Prize because of his work toward adoption of a nuclear test ban treaty.
Marie Curie was the first person to win two Nobel Prizes. Hers were awarded in 1903 in Physics & 1911 in Chemistry. Both were for her work on radioactivity. How could we forget the first woman to win a Nobel Prize, and the only woman to win two of them? Ironically, she died of leukemia caused by her lifelong exposure to radioactive compounds. Sources of info about Madam Curie include these sites:
http://www.atomicmuseum.com/Tour/curie1.cfm http://www.physics.purdue.edu/wip/herstory/curie.html
Since 1962 when Linus Pauling received his Nobel Peace Prize, two other people have each been awarded a second Nobel Prize: John Bardeen (Physics in 1956 and 1972) and Frederick Sanger (Chemistry in 1958 and 1980).
So, winning two Nobel Prizes is very special, but not unique to Linus Pauling.
BTW, Linus Pauling was not Hungarian. He was born in Portland, Oregon in 1901. His father was of German heritage but was born in Missouri, and his mother, who had English-Scottish ancestry, was born in Oregon. That is according to Linus Pauling's biography on the Nobel Prize website: http://nobelprize.org/nobel_prizes/chemistry/laureates/1954/pauling-bio.html
The work for which Linus Pauling won the Nobel Prize had nothing to do with Vitamin C. He was a chemist, and his research on the nature of chemical bonds and molecular structures was the reason for the award. His interest in Vitamin C began much later, and is still regarded as controversial "alternative medicine" by many people.
Incidentally, it is true that a Hungarian research team, plus an American scientist, first "discovered" (i.e., chemically purified) the chemical "ascorbic acid," which is also called Vitamin C. One of the Hungarians, Albert Szent-Gyorgyi, was awarded the 1937 Nobel Prize in Medicine for the discovery. Two British chemists and a Polish chemist developed methods to synthesize Vitamin C from raw chemicals in the laboratory (so much for natural compounds!). One of the British scientists (Sir Walter Norman Haworth) was awarded the 1937 Nobel Prize in Chemistry for the procedure.
I hope y'all aren't having too bad a time with TC. It certainly isn't "chemo-lite", but it causes fewer long-term problems and might even be more effective for some of us than Adriamycin (AC).
otter
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Cumulative side effects of Taxatore and Cytoxan?? Or similar repetition S/E's???
I have perused this thread back to June and have seen several mentions of cumulative effects, several saying each treatment gets worse, but a couple suggesting the first was worst with others not so bad. I had my first TC infusion on 9/4. I did not have a bad time the first two days (day 2 & 3, was taking steroids those two days) after infusion on my first round and was planning to move my next round (#2) up by one day (to Weds., 9/24) so that I could attend a seminar on days #2 & 3 (the following day and one half, Thursday and half day Friday, after infusion).Any suggestions as to whether I should expect a similar smooth ride for round two, and is anyone aware of a concensus as to how S/E's progress? I had very little nausea, just lots of pain & flu like symptoms days 4 - 8, then lots of sleeplessness, coupled with emotional havoc, some leg / body pain, constant bloody/runny nose and some headaches since then. I worked every day (10-12 hours per day at an intense desk job) for days 6 thru current. Had blood counts tested on day 9 and there were no big issues with WC's.
Thanks in advance for your wisdom and support! All the Best! Rickster
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Hello wonderful women
I am starting four rounds of TC on Oct. 1 and plan on being on line with you women for the duration. Thanks for being there.
I was first diagnosed with bc in October 1994 and had 14 years disease free. I was rediagnosed (same breast) in July and had a mastectomy with tissue expander on Aug 25. I did not need to do chemo first time around and I am so scared now that I have to face it. Reading your posts really helps.
I shopped for wigs today with my daughter and feel a bit better about the quality available. I am going to buzz my hair just after my first treatment because I cannot bear the thought of it just dropping out.
You women give me strength and hope. Thank you.
Sue
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For those of you interested in further reading about wheat germ extract (mentioned by birdsong in an earlier post), here is a pretty good article on Wikipedia: http://en.wikipedia.org/wiki/Fermented_wheat_germ_extract
The article points out that a Hungarian chemist, Albert Szent-Gyorgyi, was one of the strongest proponents of using "natural products" to treat cancer. Szent-Gyorgyi happened to be the recipient of the 1937 Nobel Prize in Medicine for his discovery of ascorbic acid (Vitamin C). Long after that work, he became interested in cancer; and he investigated the use of wheat germ extract to treat a variety of diseases, including cancer. After his death in 1986, the work on wheat germ extract continued in Hungary and in other European countries.
I don't think it's true that "traditional" medicine is ignoring the possible benefits of natural products, like wheat germ extract. What is true is that "traditional" medicine requires strong scientific evidence--controlled research studies and clinical trials, with results published in peer-reviewed research journals--before our docs are willing to adopt new drugs or methods into their treatment repertoire. Unfortunately, the proponents of "natural products" aren't keeping up with the synthetic chemists in the pharmaceutical industry in that regard. We did get Taxol and Taxotere after a huge push in the 1980's to identify and test "natural products" that would work against cancer, though.
birdsong, thanks for pointing out the information about wheat germ extract (Avemar). I'm sure we'll be hearing a lot more about it over the next few years.
otter
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