new to tthis site

barbara49 · May 2001

Hi everyone. I was diagnosed in April of this year with BC. I have had a lumpectomy and lymph node removal on right side. My tumor was 3.9 cm. and classified as poorly differentiated. Tomorrow I start my first chemo treatment and am very nervous about the whole thing. I guess the thing I dread the most is losing my hair. I really like my hair. I know it sounds foolish compared to what I'm going through, but it still bothers me. Does anyone else feel this way? Can someone give me an idea about how the chemo treatments go? Am interested in how others did during chemo treatments. I hope to be able to be here for a very long time. Thanks for info. Barbara49

nancys · May 2001

Hello Barbara, You will do just fine with your first chemo, this morning. The chemo nurses are so well informed and experienced and everyone of them that I met was a caring and reassuring professional. I am assuming that your first cycle is A/C. They will give you an anti nausea med in the IV, first. The ADR comes next in a big syringe looking plastic tube and it is a push.(does not go thru the IV) The ADR looks like red kool-aid. Then the CYT drips in slowly thru the IV and takes about an hour or a little longer. Ask for a cup of Ice chips to suck while receiving this treatment. It may reduce the possibility of getting mouth sores. Leave with anti naseua meds and start taking them as directed even if you are feeling ok. Continue the meds as directed to KEEP from getting sick. I had 4 cycles of A/C and 4 cycles of Taxol and I started the Tamoxifen with my first treatment. I have a web page if you want to read about my dx. and treatment. I am doing 3 more radiations and then I am finished. I started all this last August and it has been a long winter, am glad to see the spring. Barbara don't be afraid of the chemo, it is not my favorite thing but it goes quickly and just keep telling yourself that it is KILLING those cancer cells....My white blood counts fell very low about 15 days after treatment and my doctor suggested that family and friends stay away during this period. That was the hardest part of all, only contacting the outside world by telephone for a week. And even after my count had returned to safety, my friends were hesitant to visit. I felt like the boy in the bubble. Many of the girls here on this site worked full time through treatment, so I don't think one has to be as careful as I was. Type back in after your treatment and let me know how it went. Post any questions you may have, someone here will know the answer to your question and respond. Sending a big hug your way, Nancy

luckyj · May 2001

Dear Barbara, I too had a lumpectomy but clear margins and no lymph nodes. Radiation was in order and tamoxifen but I was shocked when I was told about the her2neu protein and a need for chemo. I cried when I found out I would lose my hair. I didn't wear a wig just pretty scarves and wonderful hats...this was late winter and spring of 2000. I found I had a lot more time because I didn't need to "do my hair everyday". The unfair part of hair loss for me was that I lost it everywhere except my legs!! The fun part of hair loss is watching it grow back...mine was so curley at first. Now it is wavy and a little grayer than before but I love it. It took a little over two weeks after the first A/C treatment for my hair to start falling out and my scalp was often tender two weeks after each treatment. You'll be ok...it's hard at first but a small price to pay for life.

What kind of chemo are you having? I will send postive thoughts your way tomorrow. Love, Luckyj

lauramarie · May 2001

Hello Barbara,
It's ok to dread loosing your hair. But just think of the possibilites of wigs, scarfs, and hats...ohhh I love hats. I did four rounds of Chemo. My hair started falling out 2 weeks from the day of my first treatment and good or bad it was almost all gone in 4 days time. On the fourth day I had had enough. I got the cut the rest off myself. I guess I figured I was in control if I was the one cutting the hair. LOL... I will say My hair was awasome when it grew back in. I finally had the curly hair I wanted all my life. It stayed cruly for almost 3 years now it is back to before chemo. I will also tell you when it was falling out it hurt like hell. I had to take a pain pill to sleep at night. So dont be surprised if this happens to you. Durning Chemo I continued to work I did my treatments on Thursday and was back at work part time on Monday. I forbid food in the house all weekend. You should try to find some foods that dont smell to try to eat. I could eat watermellon, fruit and soup. ohhh and drink LOTS of water or any fluid it will flush your system faster. I also had terrible headaches most of the time. The first weekend you'll feel pretty yucky and you might be a bit constipated so you might want to be prepared for that to happen. The second week after chemo I had mouth sores, talk to the doc if this happens he will be able to help you with some drugs. I was also cold all the time. I guess doing chemo in the winter didnt help matters there. If you have any other questions just post them or email me. Sending lots of hugs and good vibs. Laura

kimberjack · May 2001

Hello Barbara,
This is also my first time on the site. I just started my second round of A/C this past Friday. My hair started falling out in clumps exactly 15 days from the first treatment so I went and had it cut really short, everyone loved it but then it just got to be too much and I let my husband and the kids shave it. We laughed and then I cried but it didn't last long. I put on my wig or scarve and went on to the next challenge. With respects the chemo, I've done fairly well. Other than the first few days, I'm up an about. I plan on going back to work, part-time this Monday. Wish me luck, I need to get out of this house!! My personal web page details my story. Good luck.

cat1switzerland · May 2001

Hi Barbara,

First of all when you get a chance see that movie with Demi Moore with her head shaved (I think it's Demi Moore) : she looks sexy as all hell ! (That's one of my husband's expressions, forgive my English if it happens to be a bad one!)

Before losing my hair I made an appointment to get a wig and went with one of my girlfriends. I tried on many different styles, had the time of my life, and finally got myself a red hair roaring twenties style wig. When I first met my husband 17 years ago, he had a thing for red haired girls, while I am a brunette. So I surprised him with this, and had another good laugh !

I got my hair cut short, lost handfuls of it (yes, it's depressing to find it on your pillow in the morning, I must admit). But it never all fell down, so I only wore my wig for fun a couple of times. Also, when it did grow back it was MUCH nicer and thicker than what it had ever been. I have changed haircut styles 3 times now over the past year and a half, I could never have done that before the chemo !

Let us know how you are doing, the fear of chemo is always much worse than chemo itself, so you should be just fine.

With a big hug from Switzerland,
Cathy

barbara49 · May 2001

nancys said:
Hello Barbara, You will do just fine with your first chemo, this morning. The chemo nurses are so well informed and experienced and everyone of them that I met was a caring and reassuring professional. I am assuming that your first cycle is A/C. They will give you an anti nausea med in the IV, first. The ADR comes next in a big syringe looking plastic tube and it is a push.(does not go thru the IV) The ADR looks like red kool-aid. Then the CYT drips in slowly thru the IV and takes about an hour or a little longer. Ask for a cup of Ice chips to suck while receiving this treatment. It may reduce the possibility of getting mouth sores. Leave with anti naseua meds and start taking them as directed even if you are feeling ok. Continue the meds as directed to KEEP from getting sick. I had 4 cycles of A/C and 4 cycles of Taxol and I started the Tamoxifen with my first treatment. I have a web page if you want to read about my dx. and treatment. I am doing 3 more radiations and then I am finished. I started all this last August and it has been a long winter, am glad to see the spring. Barbara don't be afraid of the chemo, it is not my favorite thing but it goes quickly and just keep telling yourself that it is KILLING those cancer cells....My white blood counts fell very low about 15 days after treatment and my doctor suggested that family and friends stay away during this period. That was the hardest part of all, only contacting the outside world by telephone for a week. And even after my count had returned to safety, my friends were hesitant to visit. I felt like the boy in the bubble. Many of the girls here on this site worked full time through treatment, so I don't think one has to be as careful as I was. Type back in after your treatment and let me know how it went. Post any questions you may have, someone here will know the answer to your question and respond. Sending a big hug your way, Nancy

Hi Nancy. Thank you so much for giving me details. Now I know what to expect. I am doing 4 cycles of A/C also. But declined the taxol. Can't do the tamoxifen because my tumor was er and pr negative. I will let you know how I do and thank you for the hug. It is nice talking to someone who has been there. Huggs to you. Barbara

barbara49 · May 2001

luckyj said:
Dear Barbara, I too had a lumpectomy but clear margins and no lymph nodes. Radiation was in order and tamoxifen but I was shocked when I was told about the her2neu protein and a need for chemo. I cried when I found out I would lose my hair. I didn't wear a wig just pretty scarves and wonderful hats...this was late winter and spring of 2000. I found I had a lot more time because I didn't need to "do my hair everyday". The unfair part of hair loss for me was that I lost it everywhere except my legs!! The fun part of hair loss is watching it grow back...mine was so curley at first. Now it is wavy and a little grayer than before but I love it. It took a little over two weeks after the first A/C treatment for my hair to start falling out and my scalp was often tender two weeks after each treatment. You'll be ok...it's hard at first but a small price to pay for life.

What kind of chemo are you having? I will send postive thoughts your way tomorrow. Love, Luckyj

Thank you Luckyj for responding to my message. You make me feel better about losing my hair. I'm having 4 cycles of adriamycin and citoxan followed by six weeks of radiation. I said no to the taxol. It was a clinical trial and did not feel comfortable doing that. Thank you for thinking of me. I will let you know how I do. Huggs, Barbara

barbara49 · May 2001

lauramarie said:
Hello Barbara,
It's ok to dread loosing your hair. But just think of the possibilites of wigs, scarfs, and hats...ohhh I love hats. I did four rounds of Chemo. My hair started falling out 2 weeks from the day of my first treatment and good or bad it was almost all gone in 4 days time. On the fourth day I had had enough. I got the cut the rest off myself. I guess I figured I was in control if I was the one cutting the hair. LOL... I will say My hair was awasome when it grew back in. I finally had the curly hair I wanted all my life. It stayed cruly for almost 3 years now it is back to before chemo. I will also tell you when it was falling out it hurt like hell. I had to take a pain pill to sleep at night. So dont be surprised if this happens to you. Durning Chemo I continued to work I did my treatments on Thursday and was back at work part time on Monday. I forbid food in the house all weekend. You should try to find some foods that dont smell to try to eat. I could eat watermellon, fruit and soup. ohhh and drink LOTS of water or any fluid it will flush your system faster. I also had terrible headaches most of the time. The first weekend you'll feel pretty yucky and you might be a bit constipated so you might want to be prepared for that to happen. The second week after chemo I had mouth sores, talk to the doc if this happens he will be able to help you with some drugs. I was also cold all the time. I guess doing chemo in the winter didnt help matters there. If you have any other questions just post them or email me. Sending lots of hugs and good vibs. Laura

Hi Laura. Thank you for your info. I did not know that your hair hurts when it falls out. You gave me a lot of information I didn't know. I don't have to worry about work right now as I don't work in the summer anyway. Are you done with your treatments now? How are you doing? Thanks for the tip. Huggs, Barbara

barbara49 · May 2001

cat1switzerland said:
Hi Barbara,

First of all when you get a chance see that movie with Demi Moore with her head shaved (I think it's Demi Moore) : she looks sexy as all hell ! (That's one of my husband's expressions, forgive my English if it happens to be a bad one!)

Before losing my hair I made an appointment to get a wig and went with one of my girlfriends. I tried on many different styles, had the time of my life, and finally got myself a red hair roaring twenties style wig. When I first met my husband 17 years ago, he had a thing for red haired girls, while I am a brunette. So I surprised him with this, and had another good laugh !

I got my hair cut short, lost handfuls of it (yes, it's depressing to find it on your pillow in the morning, I must admit). But it never all fell down, so I only wore my wig for fun a couple of times. Also, when it did grow back it was MUCH nicer and thicker than what it had ever been. I have changed haircut styles 3 times now over the past year and a half, I could never have done that before the chemo !

Let us know how you are doing, the fear of chemo is always much worse than chemo itself, so you should be just fine.

With a big hug from Switzerland,
Cathy

Hi Cathy. Thank you for responding to my message. You made me feel a little better. I am going to get my hair cut on Friday. Hope I feel up to it. I will let you know how the chemo went. Thank you so much. Huggs Barbara

kimberjack · May 2001

Barbara,
I hope all is well. I realized that my response to you the other day regarding how chemo went was rather weak. I'm new at the advice game. I told you I did well during first round of chemo but forgot to tell you how I did it! I'll get the hang of this soon. Once your counts drop, don't stay cooped up, live your life. Wash your hands well and invest in some hand sanitizers. I keep some by each sink, in my pocketbook and in the car. Most germs are spread by hands,so arm yourself. (my kids think I now have a handwashing disorder!). My onco nurse advised me (when counts down) to avoid fresh fruit,vegetables and yogurt to avoid the bacteria. So, I loaded the freezer up with frozen veggies (low fat w/cheese sauce - yum) and dole fruit bowls. The kids love the fruit bowls also and take them to school. I don't know if you have children, mine are 10 & 12 and very active in sports. I went to both of their ball games, I just didn't go to the snack stand! I brought my own water and pretzels. Keep the house clean. My husband & I decided to invest in a housecleaner. Best thing I ever did! I figured I spent the same amount of money in K-mart every weekend why not treat myself to a clean house and some rest during my chemo treatments. As mentioned in previous e-mail, I'm returning to work on Monday which will present new challenges, but I decided to drive in lieu of taking the train that way I can control my schedule and keep within my own enviroment. I'm sure not all of these suggestions will fit your life but I hope some of them will help you through until you figure out your own routine. Bottomline for me, I don't refrain from doing too much but I do stop and say to myself "what am I about to do and how should I protect myself". Sorry for the long e-mail, but I was up thinking about this last night. Let us know how your first treatment went. Good luck.

amy_ohio · May 2001

Barbara,
Hi. I'm also kind of new to this sight and wish I would have found it sooner. I just wanted to let you know that losing my hair was the hardest thing associated with all of my chemo and radiation. I had hair that went half way down my back and eveyone I know knew I would NEVER cut it on my own. It seemed a cruel twist of fate that I had to go through everything AND lose my hair. I even asked my oncology nurse why that happened, I understood her explaination but it didn't make it any easier.
I got a wig the day before I started Chemo- just in case. I dyed it to match my hair but I still hated it. I was told I would lose my hair 10-14 days after I started. So I cut my long hair to shoulder length to try to help ease the pain. After two weeks I thought I was ready to lose my hair. I was pretty sure I would never wear my wig but that was OK. I had my second chemo and still hadn't lost my hair. I was beginning to think I had defied history! No way, 32 days after I started my hair began to fall out so I cut it to 1/4 of an inch. I really hated that so when it did come out I didn't care so much. I wore bandanas around to avoid leaving hair everywhere...I just kept wearing them all throughout. They were comfortable and eveyone I know found on that would match some outfit I owned!! I did not lose my eyelashes or eyebrows during the A/C. It always looked like I had choosen that hair (or lack of ) style. I wore my baseball hats and bandanas until two monts after my last treatment. My hair just covered my head but I was ready. I couldn't stand the color so as soon as I could I colored it. Now I love the color and have a great way to see how fast it's growing..
I'm just over a year out and even though I don't really like the short hair it's better than having none at all. It's curly, but always has been.
Good luck with your chemo. You'll so fine and remember every one you have is one less you have left!!
Hugs,
Amy

barbara49 · May 2001

amy_ohio said:
Barbara,
Hi. I'm also kind of new to this sight and wish I would have found it sooner. I just wanted to let you know that losing my hair was the hardest thing associated with all of my chemo and radiation. I had hair that went half way down my back and eveyone I know knew I would NEVER cut it on my own. It seemed a cruel twist of fate that I had to go through everything AND lose my hair. I even asked my oncology nurse why that happened, I understood her explaination but it didn't make it any easier.
I got a wig the day before I started Chemo- just in case. I dyed it to match my hair but I still hated it. I was told I would lose my hair 10-14 days after I started. So I cut my long hair to shoulder length to try to help ease the pain. After two weeks I thought I was ready to lose my hair. I was pretty sure I would never wear my wig but that was OK. I had my second chemo and still hadn't lost my hair. I was beginning to think I had defied history! No way, 32 days after I started my hair began to fall out so I cut it to 1/4 of an inch. I really hated that so when it did come out I didn't care so much. I wore bandanas around to avoid leaving hair everywhere...I just kept wearing them all throughout. They were comfortable and eveyone I know found on that would match some outfit I owned!! I did not lose my eyelashes or eyebrows during the A/C. It always looked like I had choosen that hair (or lack of ) style. I wore my baseball hats and bandanas until two monts after my last treatment. My hair just covered my head but I was ready. I couldn't stand the color so as soon as I could I colored it. Now I love the color and have a great way to see how fast it's growing..
I'm just over a year out and even though I don't really like the short hair it's better than having none at all. It's curly, but always has been.
Good luck with your chemo. You'll so fine and remember every one you have is one less you have left!!
Hugs,
Amy

Hi Amy. Boy did you hit the nail on the head. My hair isn't that long but I really like it. I always considered my hair and my eyes my greatest assetts. My eyes were ravaged by tyroid disease and now I'm going to lose my hair due to breast cancer. Thank you for your support. I also am glad I found this site. It helps a lot. My first treatment wasn't to bad. Just a slight headache so far. And a little tired. Only three more to go. Thanks for taking the time to respond to my message. Huggs to you, Barbara

barbara49 · May 2001

kimberjack said:
Barbara,
I hope all is well. I realized that my response to you the other day regarding how chemo went was rather weak. I'm new at the advice game. I told you I did well during first round of chemo but forgot to tell you how I did it! I'll get the hang of this soon. Once your counts drop, don't stay cooped up, live your life. Wash your hands well and invest in some hand sanitizers. I keep some by each sink, in my pocketbook and in the car. Most germs are spread by hands,so arm yourself. (my kids think I now have a handwashing disorder!). My onco nurse advised me (when counts down) to avoid fresh fruit,vegetables and yogurt to avoid the bacteria. So, I loaded the freezer up with frozen veggies (low fat w/cheese sauce - yum) and dole fruit bowls. The kids love the fruit bowls also and take them to school. I don't know if you have children, mine are 10 & 12 and very active in sports. I went to both of their ball games, I just didn't go to the snack stand! I brought my own water and pretzels. Keep the house clean. My husband & I decided to invest in a housecleaner. Best thing I ever did! I figured I spent the same amount of money in K-mart every weekend why not treat myself to a clean house and some rest during my chemo treatments. As mentioned in previous e-mail, I'm returning to work on Monday which will present new challenges, but I decided to drive in lieu of taking the train that way I can control my schedule and keep within my own enviroment. I'm sure not all of these suggestions will fit your life but I hope some of them will help you through until you figure out your own routine. Bottomline for me, I don't refrain from doing too much but I do stop and say to myself "what am I about to do and how should I protect myself". Sorry for the long e-mail, but I was up thinking about this last night. Let us know how your first treatment went. Good luck.

Hi Kimberjack. Thank you for responding to my message. You have a lot of good advice. I don't have to worry about handwashing though. I work in a dining hall and am well aware of the importance. So that part will be easy. I will remeber your tips though and see how they help me. Good luck going back to work. Let me know how you do. Thanks a lot. Are you done with your chemo? Huggs to you Barbara

jeancmici · June 2001

kimberjack said:
Barbara,
I hope all is well. I realized that my response to you the other day regarding how chemo went was rather weak. I'm new at the advice game. I told you I did well during first round of chemo but forgot to tell you how I did it! I'll get the hang of this soon. Once your counts drop, don't stay cooped up, live your life. Wash your hands well and invest in some hand sanitizers. I keep some by each sink, in my pocketbook and in the car. Most germs are spread by hands,so arm yourself. (my kids think I now have a handwashing disorder!). My onco nurse advised me (when counts down) to avoid fresh fruit,vegetables and yogurt to avoid the bacteria. So, I loaded the freezer up with frozen veggies (low fat w/cheese sauce - yum) and dole fruit bowls. The kids love the fruit bowls also and take them to school. I don't know if you have children, mine are 10 & 12 and very active in sports. I went to both of their ball games, I just didn't go to the snack stand! I brought my own water and pretzels. Keep the house clean. My husband & I decided to invest in a housecleaner. Best thing I ever did! I figured I spent the same amount of money in K-mart every weekend why not treat myself to a clean house and some rest during my chemo treatments. As mentioned in previous e-mail, I'm returning to work on Monday which will present new challenges, but I decided to drive in lieu of taking the train that way I can control my schedule and keep within my own enviroment. I'm sure not all of these suggestions will fit your life but I hope some of them will help you through until you figure out your own routine. Bottomline for me, I don't refrain from doing too much but I do stop and say to myself "what am I about to do and how should I protect myself". Sorry for the long e-mail, but I was up thinking about this last night. Let us know how your first treatment went. Good luck.

Hi,

Surprising that your onco nurse mentioned about fresh fruit and veggies - few do.She's right on top of things but wrong on the yogurt which is good for you. I found a very complete chart for neutropenia - low white blood count- and fruits and veggies are the main category to avoid. BUT YOGURT is okay - it's pasteurized - the bacteria in yogurt is not in the same category as bacteria on fresh fruits and vegs.

I have followed this- I eat baked apples or applesauce instead of uncooked - no salads- love canned apricots and they are good for potassium.

If I find the chart in my 'clutter' I will have the website and will post it

Best Wishes, Jean

kimberjack · June 2001

barbara49 said:
Hi Kimberjack. Thank you for responding to my message. You have a lot of good advice. I don't have to worry about handwashing though. I work in a dining hall and am well aware of the importance. So that part will be easy. I will remeber your tips though and see how they help me. Good luck going back to work. Let me know how you do. Thanks a lot. Are you done with your chemo? Huggs to you Barbara

Hi Barbara,
You can call me Eileen. (Kimberjack, Kimberly & Jack, are my children). I have only just begun my chemo. I just had my second round of A/C last Friday so I am a novice. I have two more rounds of A/C and then, through a clinical Phase III trial, I'm going on four rounds of Taxotere every three weeks. The trial was actually to test Taxol & Taxotere on a weekly basis but because of radomization I was chosen for the 3 week regimen. I was hoping the side effects would be less on the weekly basis, oh well. Oncologist said Taxotere is tolerated well so I'm not that worried. Talk to you soon.

kimberjack · June 2001

jeancmici said:
Hi,

Surprising that your onco nurse mentioned about fresh fruit and veggies - few do.She's right on top of things but wrong on the yogurt which is good for you. I found a very complete chart for neutropenia - low white blood count- and fruits and veggies are the main category to avoid. BUT YOGURT is okay - it's pasteurized - the bacteria in yogurt is not in the same category as bacteria on fresh fruits and vegs.

I have followed this- I eat baked apples or applesauce instead of uncooked - no salads- love canned apricots and they are good for potassium.

If I find the chart in my 'clutter' I will have the website and will post it

Best Wishes, Jean

Hi Jean,
Thanks for the yogurt information. I really miss that food. I will e-mail my research manager today and re-ask the question. If I find out anything different I'll let you know.

amy_ohio · June 2001

barbara49 said:
Hi Amy. Boy did you hit the nail on the head. My hair isn't that long but I really like it. I always considered my hair and my eyes my greatest assetts. My eyes were ravaged by tyroid disease and now I'm going to lose my hair due to breast cancer. Thank you for your support. I also am glad I found this site. It helps a lot. My first treatment wasn't to bad. Just a slight headache so far. And a little tired. Only three more to go. Thanks for taking the time to respond to my message. Huggs to you, Barbara

Just think, after your next one you are over half way done..it helps put it in perspective!! Good luck,
amy

cathyann · June 2001

barbara49 said:
Hi Amy. Boy did you hit the nail on the head. My hair isn't that long but I really like it. I always considered my hair and my eyes my greatest assetts. My eyes were ravaged by tyroid disease and now I'm going to lose my hair due to breast cancer. Thank you for your support. I also am glad I found this site. It helps a lot. My first treatment wasn't to bad. Just a slight headache so far. And a little tired. Only three more to go. Thanks for taking the time to respond to my message. Huggs to you, Barbara

Hi Barbara This is my first time here also, i am on # 4 (later today) of a/c. i am curious- why did you refuse the taxol? have heard conflicting reports as to its effectiveness after a/c. i had lumpectomy on 3/22 tumor was 1.2cm with 1 of 11 lymph nodes positive and am estrogen negative. would like to hear what influenced your decision. Cathy

new to tthis site

Comments

Discussion Boards