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anyone else with Mets?

tiger
Posts: 292
Joined: Oct 2000

Hi, I am Tiger,I am new to this site but by the looks of it you are a very supportive and communicative group of people.I have stage 4 met breast in the liver, I had a mastectomy in Jan 00,and have been doing chemo since then, at first it was working,but after seven doses of the same chemo the two tumours on my liver have increased considerably in size.I am currently doing a weekly infusion of Herceptin and once every three weeks dose of Taxol, I have heard great things about this stuff,if any of you have had it or know of a story of someone else I would love to hear from you. I am strong and healthy and stubborn as a mule, my friends and family forget about the cancer because I am constantly on the go and so healthy, the only way anyone knows there is something different about me is because I am bald.I am comfortable now going out in public without my prosthesis, I find it a pain in the behind,or arse as we Maritimers would say.I am mailing from Canada,any other Canadians out there?eh? I am also interested in any input anyone has on reconstruction, I have a "mommy tummy" from two c sections and I would love to use that and have the Diep flap done.My husband says he does not care if I have any breasts at all as long as he has me, but I am a size 42 d and it is very noticeable when I go without my boob.I wish you all well in your fight and I look forward to hearing from you.Stay strong and stay positive,we will win!!!love from Tiger.

nancys
Posts: 336
Joined: Aug 2000

Hello Tiger, You are a real inspiration. Many of us would be feeling low with what you are going through. I wish I had more information for you. The only thing I know is that my oncologist wanted me in a clinical trial where Herceptin was being used to see if was any help to early stage cancer. The Herceptin was to cost $55,000.00 a year and he said he would prescribe it to all of his patients if the cost were afforsable. He believes in this drug very strongly. I did not fall into the trial that will receive the herceptin, however. I wish you well and I will add you to my prayers. Keep in touch with all of us, we do try to support one another. My email is kinkeeper@kc.rr.com if you need to talk directly at any time. Your new Friend, Nancy

tiger
Posts: 292
Joined: Oct 2000

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

vinny
Posts: 46
Joined: Sep 2000

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

tiger
Posts: 292
Joined: Oct 2000

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.

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

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

maggie's picture
maggie
Posts: 77
Joined: Sep 2000

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

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

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

lalonde13
Posts: 7
Joined: Nov 2000

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.

jane38
Posts: 137
Joined: Aug 2000

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

murphy
Posts: 45
Joined: Sep 2000

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

jane38
Posts: 137
Joined: Aug 2000

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

nancys
Posts: 336
Joined: Aug 2000

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

jane38
Posts: 137
Joined: Aug 2000

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

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

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

jane38
Posts: 137
Joined: Aug 2000

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

tiger
Posts: 292
Joined: Oct 2000

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

pamtriggs's picture
pamtriggs
Posts: 408
Joined: Sep 2000

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.

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

hi, tiger. can't get over how positive yu are about all this.a lesson for me there, and, being a canadian, of course i am tough. lived in sask for 18 yrs, so that accounts for it!. i live in merritt, bc now. where exactly are yu? i just got diagnosed with lobular carcinoma, in the lymph glands and the blood system. just waiting to hear when chemo starts. how does chemo affect yu? i am very nervous about nausea. tended to throw up if i just stood close to my kids when they threw up! hope to hear from yu, susan

tiger
Posts: 292
Joined: Oct 2000

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

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

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

tiger
Posts: 292
Joined: Oct 2000

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

sueholm's picture
sueholm
Posts: 221
Joined: Oct 2000

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

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