Cancer Survivors Network

Thank you Nancys for responding so quickly to my email, this is Tiger by the way, I assume that because the herceptin has a price tag on it that you live in the U.S. I guess I am fortunate that I live in Canada and I receive this at no cost.I am still scared out of my mind, many have gone through the herceptin ,taxol route and have came through with flying colors, the only thing the Taxol does, (which is the chemo portion of the combination) is give me arthritic type pain in my joints, the first dose gave me horrendous pain, I literally could hardly walk for about two days, but that did not stop me,the second dose was better, I took percocet for a few days for the pain and just continued on.I have pain in my right side and my nurse at chemo says it could be the tumours pressing on a nerve, but it scares the hell out of me, I am also having pain in my other breast now, I see my onco this coming Wednesday and I am going to demand he give me another mammogram,I had one in Dec 99 and nothing showed in the right breast,so I am assuming that it is nothing,but I want it checked for my peace of mind.This cancer crap is all a mind game, if ;you dont mind,it dont matter!!!I try to carry on as if there is nothing wrong and most of the time succeed,but I find at night it is very hard,kind of like a child in the dark.I usually log on at night and keep going until I can barely keep my eyes open,then I dont think so much when I go to bed.Finding this site was one of the better things that has happened in awhile.Did you have a mastectomy too? Do you have Mets? I will look around and see if I can find your web site.I tried www.oncology.com but I just cannot seem to get anywhere in their chatroom,I like this site better,it is easier to get around in.The only computer skills I have is knowing how to type and where the power switch is.I have your email and here is mine at home davem@efni.com
If you know of anyone going through the same as me feel free to give them my email,there does not seem to be many in this site who answered my mail.
Thank you and I'll be chatting to you soon. Thanks for lending an ear, i really needed this.
Tiger.xo

Tiger:
Hi, I'm vinnie, I'm so sorry to here all that you are going thru. I can't help you with info cause I'm Just going thru my first chemo a/c treatment. For me it was hell but I recovered and ready for my next treatment. But I will be here, along with the rest of my new buddies at this site, whenever you just need to talk or laugh or whatever we can share. Stay strong, God Bless and I'll say an extra prayer that God gives you the strength to sail thru this. Keep in touch
Your friend, vinnie

Hi Alane, it is Tiger here, i have no idea obout those tests you were asking about, I see everyone asking about all these different blood tests, but I know nothing about them, the only thing I get told is when my platelets are down and again at chemo that my blood is all fine and I can go ahead with my days chemo cycle.Have you tried calling your family Dr to see if he/she can answer your question?I know it is hell waiting for results to a test,did your onco leave an on-call onco for you to call while she was away?
I hope everything is good.let us all know and take care and keep up your good spirits. Love from Tiger.

after my chemo and radiation almost
4 yrs ago, my liver tests were also
elevated. my dr ran all kinds of
liver tests and everything came back
neg. i understand your liver takes
quite a beating from the chemo. my tests are still slightly elevated but stable so nothing more has been done. i am also stage 2 with 2 postive nodes. hope this helps,
avr

hi. i know that people react very differntly to chemo, but in the event i do have a bad reaction - how soon does that reaction start? i have wuite a lengthy trip to get chemo, and am wodering about the return home. i have lobular cancer with nodes positive and vascular invasion. anyone else with the same? susan

Hi Susaan! I'm Maggie, I was diagnosed with breast cancer in Aug.1999 with lymph nodes positive. Chemo does effect everyone different,but they have so many nausea drugs now that really works. I usually would get sick on my 3rd day after chemo. I hope that everything turns out fine for you, I will remember you in my prayers. Take care and stay in touch , Maggie

thank you so much for your response. the varied answers showed me that i just won't know till i have my first batch. c'est la vie! susan

I had 4 treatments of adriamycin and cy(something) and also 4 treatments of taxotere. The first 4 treatments went fairly well, no nausea at all thanks to Zofran, but the taxotere was hell. I almost gave up after the 1st treatment but managed to finish all 4 and thanked God for the strength to do so.

Hello Susan. I did not tolerate chemo well. As soon as the IV antinausea medication wore off I would be hitting my antinausea pills. It usually took about 4-6 hours for the medication to wear off. Hopefully, you will tolerate it without a problem. Jane

Hi Sue. Yes chemo is different for each of us. You should be feeling well enough to get home. My chemo was on Thursdays and I didn't get sick until Saturday. By Monday I was very sick and each time had to be hospitalized due to dehydration. DRINK DRINK DRINK Even if you don't really feel thirsty just sip water. Especially during and right after your chemo. Try not to let yourself get dehydrated. Hope you do well. Get us posted. God bless Angel

Hi..I'm new here. I sure hope I am not intruding. I certainly would not want to stick my nose in where it doesn't belong. I was "lurking" and saw this post on the "liver tests" And hoped you would not mind me commenting on this one.
I had chemo from Aug.99/Jan.00 My "alk. phos levels" (liver/bone levels) Mine were over 2oo for quite some time. I also had tests to rule things out. Bone Scan 4-18-00 came back "clean" I had a Abdominal CT 5-25-00,that alos came back "clean" And tons and tons of bloodtests all were fine. The levela are no finally coming down. they think mine was a combo of chemo (cmf 6 cycles/6 months) and lots of Tylenol before that to get rid of pain from node removal. I had alot of mobility probs. during radiation treat.(5-99-7-99) I was on 60 mg. a day for `7 weeks everyday almost. Now they are backing off on whether that was such a hot idea or not.Plus I was on Zoloft for depression from11-99 to 6-00. Then I'm on daily meds. for another med. condition that I have had for over 25 years. Then don't forget if they gave you any anti-nausea meds. add those to this mix.
My Gastro doc told me when I was sent to him to see if he could figure this out.(I had been to him for years other med. cond.) He told me that ANY medication can cause those levels to go up. Multi-Vitamins can do it. He told me years ago when I first went to him that the alk phos levels go up and down everyday. He said "if you are not sick enough to need to go to the doctor then you would not know they are doing this." They go up over something as simple as eating! Did you know that? I didn't either. One thing he did tell me? NO MORE TYLENOL!! this is very serious and not many people realize this CAN cause trouble in some people...more so then others.
I have stopped ALL Tylenol use. I have cut my one med.dose in half for a day. (tagamet was 800mg a day now 400mg)
I took myself off the Zoloft back in June. In Sept. when I had my bloodwork done that's when we found out they were coming down .Nothing to get a head rush over but we are making progress in getting them back where they should be...

I certainly hope I have not worn out my Welcome her with one post. I have lits of sites saved (or I can find them again) that I would love to share if anyone wants the help with any of this.
Quick run down?:
Name Annie
50 yrs. old this year.
dx 4-13-99(surgery 4-21-99), invasive ductal carcinoma,small tumor, under 2cm, neg.nodes, lumpectomy,radiation 33 treas., chemo. Treatments completed 1-14-00.

Hope to be invited back.Thanks Take care everyone/stay safe/be well
Annie99

Hi Annie, I am Murphy and I want to say welcome!! I am not at all familiar with Mets that this post is talking about but I just wanted to say you will not wear out your welcome....there is a wonderful group of ladies on this site. Sounds like you had quite a time of it all and I sure hope you are doing well and continue to do so. I am a breast cancer survivor of 9 months! Stay well. Murphy

Annie, you are always welcome on this site. Any info you can give wil be of help to someone. I am a breast cancer survivor. I am presently undergoing reconstruction. I had a bilateral free TRAM flap reconstruction in February of this year and yesterday I had the nipple reconstructed on my left breast and the right breast was revised. I have still one more surgery to go through. I was hoping this would be the last. Any help I can give you I am more than happy to do so. Please, keep coming back to our site. It is made up of people just like you and me and her and so on and so forth. Jane

Hi Annie, Intruding....NEVER....Welcome aboard our survivor's journey. We all keep in touch and share information just as you have done tonight. We share our happy stories, our sad stories and our fears and our hopes and best of all, "we pray for one another." You will find a wonderful mix of people here at CSN. I have formed very close relationships with several that I met here. You heard from Jane and Murphy, two of my favorite people, already and others will respond to you as well. I agree that when it comes to meds, that we must be very careful. I am just starting my chemo, go for my second "cocktail" this Friday. My hair is starting to come loose when I brush. but I am determined to not let that hair loss bother me. We'll see how I feel when I see it all gone??? Stay with us and post again, we all need one another. Your new friend, Nancy

Remember, Nancy and anyone else about to become bald, losing your hair really is not bad at all. No more shampooing, no conditioning, no blow drying, no worrying about a "bad hair day". Just slap on that wig, a scarf and or a hat and you're set for the day. Personally, I enjoyed being bald. Rarely wore my wig, only when my bald head would embarrass the person I was with, namely Kathy, my oldest daughter. I found out I have a very pretty-shaped head. no dents or bulges. I wore it proudly. I wanted people to know I was in the fight for my life and wanted them to think about it and maybe do something for themselves for early detection. The only hair I really missed was my eyebrows and eyelashes. No more shaving either. That's a plus. Jane

wow, didn't think about losing my eyelashes!. thanks for warning me! chemo starts in next week or two. susan

I didn't even think about the eyebrows and eyelashes as being "hair". It was a real shocker when I did find out. Learned how to draw on my eyebrows which I never had to do before. I had thick, nicely arched black eyebrows. I never did learn how to put on false lashes. Can't have everything. Jane

Hi Nancy, Tiger here, when I started to loose my hair, instead of letting it get to me and seeing myself look ill with only a few strands of hair sticking out of my head, I went and had it shaved off, Everyone comments on what a nice shaped head I have, no dents or bumps, no more shampooing and drying and fussing, i have a wig but i have not worn it yet, I wear a ball cap or a bandana, and not one of those ugly turban things either, i bought material and made a nice colorful bandana, and in summer it is nice and cool. I wear my pink ribbon pin and let people think a little when they see me, and maybe my confidence in myself will help another cancer patient who sees me, because in the past year i have met so many people with cancer who you would never have suspected, and alot of them complain that their wigs feel like dead cats sitting on their heads, so maybe being strong for ourselves will inturn be strenght for someone else.
Stay strong and happy and keep the faith.
Love Tiger xoxox

nancy, when i began to lose my
hair, i vacuumed my head daily
with my small vacuum. it's really messy & annoying. i wore
wonderful hats, thought everyone was looking at me, of course they weren't, i was just
paranoid ! it's not fun, experiment with new makeup and when that first fuzz appears it is such a joy . actually i was
quite stunning bald (i'm not that conceited, people told me)
and your new hair will be wonderful. good luck, arlene 4 year surviror.

Dear Alane - The liver responds very quickly to the body & can show these high results. My oncologist said that it can mean either a lot of damage or a lot of healing going on. Unless other factors back it up he just watches them. Also pain killers containing paracetmol can do a lot of damage to the liver in large doses (more than 8 per day). Sounds like a case of a poorly communicating onco to me. If mine goes away he leaves contact details for a locum & even phoned from vacation in Wales to the locum here in New Zealand (where I live) when I had a bad reaction to a drug being used. You have to be a bit pushy with these docs to get the information you need. Remember it's your body & your life so get pushy. Hang on in there. I am holding your hand in the bad moments & the good. Pam from New Zealand.

Amen to that Pam - We can't repeat it often enough: It's my body. The Docs work for me. We've got to be pushy and questioning as much as possible everything that is recommended and every drug we take!

Hi Susan, this is Tiger.I am sorry to hear that things are not as they should be,but this will be a time of personal growth and much laughter for you. the key is to not focus on having cancer, you will loose your hair, maybe loose some weight or in my case put on weight,the chemo made me sick the first time, I threw my guts up for three days straight,and the pills they gave me to combat the nausea made me freaky,i was jittery and could not sleep,so i threw them away and just took gravol and it helped alot. the second dose was better,i did not throw up, i did eight courses of that particular chemo with some results but the tumours on my liver started growing so now i am doing Herceptin/Taxol, it does not make me ill, but i get really bad joint pain and bone pain for about a week,then I am up and running again. I know what you mean about throwing up if your kids are, I am a sympathetic puker too. One time my youngest son when he was about six months old was throwing up so i took him to the bathroom,well he puked all over me so i undressed him and myself, and i was gagging ,my husband came home from work and the two of us are sitting on the bathroom floor buck assed naked puking, he could not help but laugh. Its funny that you said you walked down the hall of your mobile home, we just bought a modular home,it is huge and i love it, we have been living in military quarters for the past ten years,we are originally from Nova Scotia, we did a year in Montreal and we have been in North Bay,Ontario for the past nine years,it is bloody freezing here now,woke up this morning to frost.I go on halloween day for a ct scan of the liver and will get the results on Nov 8 so i will stay in touch, my home email is davem@efni.com if you prefer to stay in touch that way. Dont let this get you down, even if you just want to talk about your day or your kids,mail away, there is more to life than this cancer crap, dont stop living and if you feel the need to let loose and cry then do so, it is amazing how much better you will feel afterwards, i did not for so long because i thought it would make me weaker,but it has let me be stronger, remember only weak people are afraid to show their emotions.I still yell at my kids and argue with my husband, so many people say having cancer changed their life,they get along better with their kids etc, but life must go on as normal as possible to keep you strong and focused on LIFE. Laughter is the best medicine and my friends keep me laughing, i have one friend who e mails me jokes on a regular basis and i will tell you it really helps to relieve tension in yourself and in the house. I wish you well on your first chemo, dont let it get you down,it is scary but guess what, we will survive because we are women and we are the strongest creatures on the face of the earth. If we can face the winters in Canada then we can face anything!!!!! Stay in touch and keep smiling.
lots of love and a big hug, Tiger xo

ask your kids this one -what's yellow and dangerous? answer comes next message! yeh, i can see already the trick to managing this whole thing is not to let it rule your life. i don't want to be susan 'you know, the one with breast cancer'! i went back to work a little the last couple of days, and plan to do that as much as i can in between chemo.i'm meeting a lady tomorrow who says she bought the most expensive pills on the market for the nausea, cos she was determined not to be puking all over, so i will be checking my bank balance to make sure i have enough for those!. i think i told yu i live in merritt, bc, but i am a forces brat myself as my dad was in the RAF in england for 30 years. we lived all sorts of places. i now like to stay put! i am very fortunate in that i have my own business - a stationery store- so i will be able to schedule my work as i please, and need have no fear of getting fired! i made one of my staff manager, and am going to let her hold the reins till all the treatment is over. it wouldn't work for me to try and take charge when i'm there, and keep handing over when i'm not. one of the hardest aspects for me of all this is that i discovered the lump just two weeks after my father's funeral, and my mum had also jus tdied a couple of months before. i have to discipline myself to not thinkabout that loss too much. i loved your letter. you are going through a very rough time, so if there is anything i can do for you eg send yu some bc weather, just ask! i know about four jokes, which i willshare with you as we go along. i've heard of north bay ofcourse, how big, what goeson there? take care, susan

Hi it's Tiger again,I asked my oldest what is yellow and dangerous but he says a banana as you can use it as a boomerang? very dry sense of humour this one!! As for the most expensive pills on the market for nausea, try the gravol first, they really worked for me, why spend if you dont have to? So I am going to assume you were born in England? I have an aunt in Corby England, I have not seen her for years but she was up last year to see my parents ,who are currently living in Brantford Ont which is about 4 hours from me. Close enough if I need them, yet far enough away so they dont drive me bananas!! North Bay is very boring, it is mostly highway as we are a major link between Toronto and Northern Ont and the US. There is alot of skiing,hunting,and fishing here, apparently Bob Izumi films some of his shows on our Lake Nipissing, supposedly chalk full of fish. I have friends that are going to Comox BC in January,they are posted there, that is the only thing I hate about the military is you make friends and boom they are gone. Do you have any hobbies? I do ceramics, i buy the greenware from a friend on base who has her own kiln and do my own painting, it keeps me out of the malls and out of trouble, I am a shopaholic, about a week after every chemo I hit the mall and scare my husband. I have almost all my shopping done, I put it all on layaway at Wal-Mart,that way I dont have to drop a bundle of money at once. The people here are either really nice or really ignorant, we get alot of Americans up here around fishing and hunting season, they are so nice and friendly. How old are your kids? Tell me a little about yourself,I checked your webpage but there is not alot of information there. Keep in touch and keep smiling. Talk to you soon. Lots of love
Tiger.xox

tell your son, tiger..............shark infested custard!
will reply to rest of letter tomorrow, thanks