Making up my mind about chemo — need more info
Question:
i read your post and would be interested in havng you email me the info on the other BC group and how to get there
This might be of interest to others in this newsgroup as well. Perhaps you could post the information here? Thanks! …lisa
Response:
To show that there are so many different approaches to treatment timing I just did 1 1/2 years of CMF every 3 weeks, or 4 weeks if my count wasnt up, now I am having Taxol weekly. Is there anyone that could tell me about their hair loss during weekly Taxol . The Dr said I may not lose my hair. Carolyn Herring
– Hide quoted text — Show quoted text – Linda…Mine also was over 6 months. A/C is 4 treatments three weeks between each one. CMF is 2 weeks on, and two weeks off over a 6 month period. That is actually 12 separate treatments you go in for. (considered 6 cycles/2 per month) It has a tendency, given that way to be easier on the body as it is being spread out over 6 months instead of how the administer the A/C protocol. My "tumor" was just a hair over 1cm. I had a "Lumpectomy". "Nodes" were clean. Surgeon got "clean margins" Lumpectomy and node disection was done as one surgery. (April 21st ‘99) Radiation was first (this was based on my preference and my status, and okay’d by oncologist) that was from May to July ‘99. Chemo was August to January of this year (14th). Everyone’s case is different, and every doctor has their own way of doing things. That’s the reason for all the different protocols you are reading about. This all depends on tumor size, node involvement (if any), clear margins,ER/PR (- or + status) and probably about another bazillion things. There are most likely as many treatment regimines out there, as there are people with cancer. Hope this helps clear up some of the confusion. Don’t feel bad….There is SO much to try anf take it…you can’t possibly undersatand everything there is to learn..But just keep reading. There are alot of great people in here, that will be more then glad to answer your questions and calm your fears. These sites might help you get some of the info. you are looking for… http://my.webmd.com/ http://www.mayoclinic.com/ http://www.adam.com/ Technical Glossary Of Breast Cancer Terms: http://www.cancerlynx.com/breast_cancer_terms.html There are tons of others. Another idea is go to the "search" area here at webtv, just type in what you are looking for, and you will get more information that you could ever use in a lifetime. If you don’t get what you are really looking for….then just change the wording of what you are looking for. take care stay safe and well HuGs!!! Annie "….I will age ungracefully until I become an old woman in a small
Response:
Linda…Mine also was over 6 months. A/C is 4 treatments three weeks between each one. CMF is 2 weeks on, and two weeks off over a 6 month period. That is actually 12 separate treatments you go in for. (considered 6 cycles/2 per month) It has a tendency, given that way to be easier on the body as it is being spread out over 6 months instead of how the administer the A/C protocol. My "tumor" was just a hair over 1cm. I had a "Lumpectomy". "Nodes" were clean. Surgeon got "clean margins" Lumpectomy and node disection was done as one surgery. (April 21st ‘99) Radiation was first (this was based on my preference and my status, and okay’d by oncologist) that was from May to July ‘99. Chemo was August to January of this year (14th). Everyone’s case is different, and every doctor has their own way of doing things. That’s the reason for all the different protocols you are reading about. This all depends on tumor size, node involvement (if any), clear margins,ER/PR (- or + status) and probably about another bazillion things. There are most likely as many treatment regimines out there, as there are people with cancer. Hope this helps clear up some of the confusion. Don’t feel bad….There is SO much to try anf take it…you can’t possibly undersatand everything there is to learn..But just keep reading. There are alot of great people in here, that will be more then glad to answer your questions and calm your fears. These sites might help you get some of the info. you are looking for… http://my.webmd.com/ http://www.mayoclinic.com/ http://www.adam.com/ Technical Glossary Of Breast Cancer Terms: http://www.cancerlynx.com/breast_cancer_terms.html There are tons of others. Another idea is go to the "search" area here at webtv, just type in what you are looking for, and you will get more information that you could ever use in a lifetime. If you don’t get what you are really looking for….then just change the wording of what you are looking for. take care stay safe and well HuGs!!! Annie "….I will age ungracefully until I become an old woman in a small
Response:
I had a small tumor 1 cm. in diameter, clean margins, and no lymph node activity and I am very, very happy to have also done chemotherapy. Some of my tumor markers were very aggressive. That, and the fact that I was only 33 at the time of diagnosis was why chemotherapy was recommended for me. New research has come out which states that doing the chemotherapy first before radiation. I did four rounds of Adriamycin/Cytoxan over a period of three months. Then, I had 25 rounds of radiation. Chemotherapy was the most terrifying thing I’ve ever done in my entire life, but I am very happy I did it. I’m not disciplined enough to stick with a macrobiotic diet or stringent regimen. YOu can do nutritional therapy in addition to the chemotherapy and it is helpful. I also did yoga the entire time. It was a gentle way to keep my body moving and supple. Psychologically, it was helpful to me because I know that I did everything I possibly could to fight my cancer. It is now one year later and I am very active and healthy. This year, I will run the "Race for the Cure," not walk it. I am also much more relaxed about life and really truly appreciate and enjoy it. Good luck!! I personally would do the chemotherapy!! * Sent from RemarQ http://www.remarq.com The Internet’s Discussion Network * The fastest and easiest way to search and participate in Usenet – Free!
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Hope this helps,
Allan, It certainly does. Thanks! …lisa
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<snip oK I HAD FOUR CYCLES of chemo. this means every 3 weeks on a friday i had the lovely "menu" of adriamycin/cytoxin. this is how my treatments went 1st: Dec 10, 1999 2nd: Dec 20,1999. 3rd :Jan 21,2000 4th: Feb 10, 2000 So those are the cycles. I was not really sick after each chemo treatment due to the great premeds they give you. each treatment took 2 hours. After my husband and I got home from treatment I would sleep and not eat for 5 days. hsd no appetite. By the 5th day i was ready to go back to work. had "chemo brain" first few days but then fine after that.
Okay, I am around the 4 years mark of my mastectomy (and ~3.5 from the end of treatments). Linda’s story sounds very familiar. The main difference was that the painkillers and anti nausea medication didn’t really help.. After each cycle I slept for 3 days and didn’t really eat for 5. I couldn’t concentrate for a week or so. The most traumatic thing about Chemo was losing my hair. I know it sounds silly but it upset me the most. The bottom line is that if I had to go through it again, I would. Even after the chemo and the radiation I had this fear that the cancer will come back. Going through the chemo definitely bought me (some) peace of mind. Studies (that my selective memory remembers) show that chemo in combination with surgery is more effective. I am certain your oncologist mentioned it but Cytoxin is really harmful to your heart, so see a cardiologist before you sign up for that treatment. Sending you a big hug, LilyA
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my oncologist sez it’s because of the in situ cells. they are precancer and they were too deep to remove with surgery. i am high risk for surgery becuz of heart problems and diabetes== and the master of them all–obstructive sleep apnea. they wanted to get in and get out, so’s not to stress my heart. ihave my right coronary artery is blocked 100percent and they were worried i might maybe have a heart attack on them. the oncology surgeon thought i would just do radiation but the oncologist decided i should do both and i just want to be cancer free for my 6 yr old daughter. she has been very understanding and patient with all of this. we have been very lucky to have an understanding kindergarten teacher who, along with me decided sarah should see a counselor at school to help her deal with this too. if i had to do this for 8 years i would for her sake. so far it’s been nearly a breeze i have my treatments on fri and go back to work on tues. so far that has worked. i work as a convenience store cashier i think that’s one of the reasons i ‘ve had such good luck with no lymphedema. i use my right arm all the time. well, i better close for now. i can go on for hours. this consumes so much of my life these days, i hardly remember life without this going on. later love and prayers mary rose Sing like you know the words; dance like no one’s watching; and love like it’s never going to hurt.
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hi linda i am having chemo because i have some in situ cells that were too deep to remove with surgery. and since they are in situ cells (possible pre-cancer) i would rather be safe than sorry and worry about recurrence, like i’m not already doing this. the protocol for the chemo i am having is 2 weeks on and 2 weeks off. i have cytoxin/methoxerate (or something ike that) and fluorocil the 1st week, and the second week they take out the cytoxin. after i start radiation in july they will take out the methoxerate or whatever it is, and i will only have the cytoxin and fluoricil. the 1st week will be both and the second will be the fluoricil. after radiation i will have 2 more cycles and then tamoxifen. i too wonder about the side effects but will gladly take that little security blanket. i will start that sometime in oct. as a birthday present probably. hey, they told me once i started chemo my periods would probably stop, but i just had one. darned the luck . that was one thing i was looking forward to. oh well. by october anyway. think i will try to fall asleep now. this chemo gives me insomnia really bad. i refused the steroids last time becuz they kkept me up for several days. catch ya later love and prayers mary rose Sing like you know the words; dance like no one’s watching; and love like it’s never going to hurt.
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This might be of interest to others in this newsgroup as well. Perhaps you could post the information here?
I can. ACOR has a breast cancer listserv – here are instructions: Leave the subject blank. If you want about a billion emails a day, put this in the body of the message: subscribe BREAST-CANCER firstname lastname If you’d rather have the listserv in digest format (one combined email a day – no attachments, no chance for viruses) put this in the body of the message: subscribe BREAST-CANCER firstname lastname DIGEST If you want your mailbox as uncluttered as possible, try this: subscribe BREAST-CANCER firstname lastname DIGEST NOACK NOREPRO It sends mail in digest format, does not send a confirmation email if you post to the list and does not send back a copy of the email you sent. Hope this helps, allan grossman tale this, spambots! humans can reach me at wizard at pointbeing dot com
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Now, if I could just hear from some long-time survivors (at least five years) who took the chemo route, and felt like they really benefited from it, I could brave enough to undergo the same. I am a long term survivor. I was diagnosed in Dec/93. Grade 3 —- Stage differentiated and VERY aggressive. Chemo YES!!! 4 cycles of A/C — radiation and 5 years on Tamoxifen. Would I change any of this treatment– NO—-why? because I am NED today (no evidence of disease) Hope this helps your decision. Good Luck whichever way you decide to go. — "Cherish today. Yesterday is but a dream, tomorrow a vision of hope. Look to this day, for it is life."
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Mary Rose — My question is …. why are you going through chemo at all????? I basically had the same diagnosis, but I had a few bad cells (less than 1 millimeter) in the Sentinel Node. No other nodes were removed. The mass in the breast was less than 1 cm. I had several consultations with different oncologists (that I had to pay for myself as you know how insurance is for second opinions), and it was agreed that I would do well with radiation and tamoxifen. We’re all different … and all doctors are different … Anyway, do you know why you have to have chemo??? I’m not trying to be nosey either, just interested …. Pat in California
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Greetings Laurie – I have just finished reading your posts and while I’m not a five year survivor, I thought I’d check in with you as a two year survivor. I underwent a lumpectomy, chemo, radiation, and still on tamoxifen. Another BC support board I hang out on has many many many five and more year survivors (they call it NED – no evidence of disease). I agreed with you on many points in your first post – especially regarding the medical profession not listening the patients – it’s all in our head syndrome is still widespread I think. I’m sorry to hear that you have had a recurrence. I hope that you can find a doctor you can work with. Take care. Sandyb
– Hide quoted text — Show quoted text – Thank you so much for politely answering my tirade about chemotherapy. You people, more than any others, can understand what state of mind I am in. Now, if I could just hear from some long-time survivors (at least five years) who took the chemo route, and felt like they really benefited from it, I could brave enough to undergo the same. Any doctors out there, with any good statistics on chemo, are greatly appreciated. Laurie
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hi linda bliss here i have posted here b4 so yall know me:-) I graduated from radiation friday YEAH!!! oK I HAD FOUR CYCLES of chemo. this means every 3 weeks on a friday i had the lovely "menu" of adriamycin/cytoxin. this is how my treatments went 1st: Dec 10, 1999 2nd: Dec 20,1999. 3rd :Jan 21,2000 4th: Feb 10, 2000 So those are the cycles. I was not really sick after each chemo treatment due to the great premeds they give you. each treatment took 2 hours. After my husband and I got home from treatment I would sleep and not eat for 5 days. hsd no appetite. By the 5th day i was ready to go back to work. had "chemo brain" first few days but then fine after that. My BC tumor was found sept 99, had lumpectomy with clear margins, axillary node dissection and 2 out of 29 lymp nodes taken were cancerous. stage 2 and 2.9 cm. MY ER and PR both positive (good sign) and HER2 was negative (another good Sign) Hope this helps you:-) be well LOVE LINDA http://community.webtv.net/llb1952/LINDABLISSSWEBPAGE
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My wife had her first session a little over a week ago. She was weak and depressed for the first week and then she went nearly back to normal. Her hair hasn’t started to fall yet but we are expecting that within the next week or so. I am amazed at how good she is doing after this first week. I pray the hair loss will not be too traumatic. She will do a total of 4 treatment, 3 weeks apart. Also, we heard on TV last night that chemo is now being recommended for all size tumors. I didn’t hear the whole thing but my wife’s was 1 cm and the doctor recommend chemo. The emotional side of this ordeal has been the worst in my opinion. At least from my standpoint. As her husband, I’m frustrated because I cannot help her other than kind word and encouragement but we both suffer the anxiety and heartache of this whirlwind. – Hide quoted text — Show quoted text – Somebody–Anybody. Tell us about Chemo! how often? how long each time? how sick? Can you drive? What’s a cycle? How does a a 4 mo cycle work? a 6 month cycle? Any medicines do better than others? What about rejecting chemno totally? If there is no metsatasis beyong nodes what are the chances for survival beyond 5-7 years with radiation alone? Thank you so much for politely answering my tirade about chemotherapy. You people, more than any others, can understand what state of mind I am in. Now, if I could just hear from some long-time survivors (at least five years) who took the chemo route, and felt like they really benefited from it, I could brave enough to undergo the same. Any doctors out there, with any good statistics on chemo, are greatly appreciated. Laurie
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Do you know what chemo regime you will be having?? That makes a big difference in order to answer your question….I saw Linda posted re her experience with 4 rounds of AC…..I have a similar story….4 rounds that were 21 days apart. By taking my antinausea meds on time the queezies were ‘tolerable.’ I was tired, especially during the 1st week after tx (but still functionable)! As far as how much AC you would receive – generally it is determined by a formula involving your weight. I’ll bet if you let us know a little more as to what chemo….we can give you a lot more specific info!!!! ~ Lisa – Hide quoted text — Show quoted text – Somebody–Anybody. Tell us about Chemo! how often? how long each time? how sick? Can you drive? What’s a cycle? How does a a 4 mo cycle work? a 6 month cycle? Any medicines do better than others? What about rejecting chemno totally? If there is no metsatasis beyong nodes what are the chances for survival beyond 5-7 years with radiation alone? Thank you so much for politely answering my tirade about chemotherapy. You people, more than any others, can understand what state of mind I am in. Now, if I could just hear from some long-time survivors (at least five years) who took the chemo route, and felt like they really benefited from it, I could brave enough to undergo the same. Any doctors out there, with any good statistics on chemo, are greatly appreciated. Laurie
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Hi rtm, I’m not a doctor, but I’ve been through some of this, and I’ll try to answer your questions. There are many sorts of chemo, ranging from relatively mild to very strong, prescribed depending on the stage and aggressivenes of the cancer. Some centres do chemo-sensitivity testing on the tumour to determine which chemo will be most effective for a particular patient’s cancer, so you might want to ask about that. In most cases chemo is given in 3-weekly cycles (i.e. a dose every three weeks) because it works by attacking cancer cells at a specific stage in their development (usually when the cells are dividing) and a number of 3-weekly treatments gives the best chance of catching the maximum number of cells. Most are given intravenously, although some can be taken in pill form. A 4-month programme would have 6 cycles in it, a 6-month programme 9 or 10 (which would be unusually high). Side-effects vary depending on the type of chemo and the patient, but the new anti-emetic (anti-nausea) drugs have made it a lot easier. I’ve had two programmes of strong chemo (Adriamycin, Taxotere), and only vomited once – and that was because I felt so good that I decided I didn’t need to take the enti-emetics for as long as the doctor had said! Needless to say, I didn’t do that again. The rest of the time I had a few days of low-grade nausea after each treatment – just feeling a bit off-colour, really – and then felt fine. The worst part was the fatigue, which could be fairly debilitating for a couple of days. For that reason I had my treaments on Friday after school (I’m a teacher) so I could crash on the couch for the weekend, then be back at school the next week. I did reduce my workload a bit, but was able to keep working all the way through. The hair loss was tough, but it has grown back so thick and curly that it looks like a very expensive perm! What about rejecting chemno totally?
It’s your body and your choice – which doesn’t make the decision any easier. Some women have done this and survived for years; others died. All we can say is that, statistically speaking, women with lymph node involvement who have chemo survive longer than those who do not. If there is no metsatasis beyond nodes what are the chances for survival beyond 5-7 years with radiation alone?
I don’t know the stats, but if the chemo is in the nodes, then it is also in the lymph and blood system. Because it can take a long time for a cancer cell which travels through the blood and settles in another part of the body to grow into a detectable tumour, there is no way of guaranteeing that it hasn’t spread beyond the nodes. Radiation affects only the local area and is used to prevent recurrence on the site of the primary; it has no effect anywhere else in the body, so won’t catch any cancer cells that have spread. OTOH, there’s no guarantee that chemo will either, but it certainly has a higher chance of doing so. Good luck with your decision. Wishing you well, Nicki
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hi my name is mary rose, and i am on chemo right now. i am on cmf that’s cytoxin/ methoxerate/ fluoricil. my cycles are 2 weeks on and 2 weeks off. that means i go 2 friday’s in a rowand have chemo, then i am off for 2 weeks. each week i go is called a session. each two weeks is called a cycle. my tumor was 1.4 cm i had absolutely no lymph involvement but because i have some precancer cells, i am doing chemo and radiaiton. through all my fears about chemo i would NOT not do treatment and risk those pre cells turning into the real thing.. i had my surgery (lumpectomy with partial auxillary node dissection). i will have 6 weeks chemo, then 6 weeks radiation with chemo and then 6 more weeks of chemo. so far i have only been mildly queasy. no vomiting, at least not yet anyway. also still have hair. it has had very little thinning but i do see more falling out then normal. i am prepared for anything. i hope that we cn be of help to you this group has been a great help to me. feel free to write me anytime. can’t always guarantee i can answer a question but i can always try. love and prayers mary rose Sing like you know the words; dance like no one’s watching; and love like it’s never going to hurt.
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- Hide quoted text — Show quoted text – hi linda bliss here i have posted here b4 so yall know me:-) I graduated from radiation friday YEAH!!! oK I HAD FOUR CYCLES of chemo. this means every 3 weeks on a friday i had the lovely "menu" of adriamycin/cytoxin. this is how my treatments went 1st: Dec 10, 1999 2nd: Dec 20,1999. 3rd :Jan 21,2000 4th: Feb 10, 2000 So those are the cycles. I was not really sick after each chemo treatment due to the great premeds they give you. each treatment took 2 hours. After my husband and I got home from treatment I would sleep and not eat for 5 days. hsd no appetite. By the 5th day i was ready to go back to work. had "chemo brain" first few days but then fine after that. My BC tumor was found sept 99, had lumpectomy with clear margins, axillary node dissection and 2 out of 29 lymp nodes taken were cancerous. stage 2 and 2.9 cm. MY ER and PR both positive (good sign) and HER2 was negative (another good Sign) Hope this helps you:-) be well LOVE LINDA http://community.webtv.net/llb1952/LINDABLISSSWEBPAGE
Bravo and Congrats Linda!!!! 
Hugs Boomer
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Hi mary rose linda bliss here:-) I have seen your posts so many times and i hope you have read mine. I do have one question? I am so curious to know why your chemo is 2 fridays in a row then off then on again. If you had clear margins and no lymph node involvement and a small tumor what are they spreading the chemo out like this? I hope you dont think i am being nosy. I am just interested in other women’s treatments. My chemo was 4 times 3 weeks apart that ended feb 11, 2000 and i "graduated " last friday from radiation and now on to tamoxifen Thanks for hearing me mary rose and KEEP SINGING cuz i know i will:-) LOVE LINDA http://community.webtv.net/llb1952/LINDABLISSSWEBPAGE
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sandy hi there linda bliss here and i read your post and would be interested in havng you email me the info on the other BC group and how to get there I also had 4 treatments of chemo and just "graduated" from radiation friday. I worry all the time that the beast will come back. stage 2 and 2.9 cm 29 lymph nodes taken 2 were cancerous. lumpectomy had clear margins. ER and PR positive HER2 negative. You are not concerned about what tamoxifen can do to the body?? have you had any probs?? i have to start taking it for 5 years Hope to hear from you:-) LOVE LINDA http://community.webtv.net/llb1952/LINDABLISSSWEBPAGE
