Chemotherapy for Stage IV
Comments
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Great news Mary. Hope it will be your magic bullet for a long time to come.
Great to see you posting Karen, despite all the crap you are having to put up with. Hopefully that corner has been turned and you are back on Regression Highway!
Lx
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Radient, In answer to your question, I have lost most of my hair....not on my arms however and can't really figure that one out. Have these little bangs left on top which sort of curl up like a Kewpie doll right in the front while I sleep and fuzz in the back. I don't know if I will continue to lose the hair on my head or if it is at a standstill.....I also sometimes wonder if I stay on this indefinitely, if it will ever come back (this will be the 3rd time I have lost hair on chemo), but you know what, I am not sure if I even care. Sometimes I wear a wig, but it seems like I usually end up giving them away and most of the time I wear a bandanna, but when I am at home, I have gotten so I wear nothing. My eyebrows are getting sparse and I do have eyelashes (wish I didn't since I have to have them plucked due to how they grew back weird) but they are a very strange color...very light with sort of a red cast and they were always black. I think went you get the low dose, all side effects are minimized.
I am losing fingernails and do not think this is a normal SE with Adriamycin....at least not one of the top three. One thumbnail is gone and the other looks to have that fungus about 2/3 of the way down....other fingernails are looking bruised and I have one toenail that is looking like it got hit with a hammer. My toenails never came back normal after Abraxane. I think nails get hit along with hair since they are both protein.
Right now I am just so thankful, that something is keeping the liver tumors from getting any larger than they already are. The one is really large 8.5 cm X 7.5, but my liver function is always normal so evidently they are not near the ducts.
Tomorrow I leave for Williamsburg VA. with one of my best friends from my hometown...she's got a condo there and we are going to meet some other women there. This will just be for a little R & R and I am looking forward to it.
I hope each and everyone of you find something that works for you. Have a good weekend. Marybe
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so i started on page 30 and read to page 40. i've kind of avoided this thread because i had better things to do daily like Whole Brain Radiation but that is finished now and since i go on Monday's to be infused with Abraxane, this thread is a good one for me.
my o my.. the things we put up with.. Texas Karen.. there is nothing like a Texas Bar for stories and a good time.. I sure wish you could be doing that rather than all this CRAP you are going thru.
Is it nice to already know most of the people here? yeah, and I have yet another thread to add to my Favorite Topics. I really like discussing food things but some sorts of info and camaderie are priceless.
later and best of luck everyone
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MemaSue,,Thank you for the welcome., I started treatment in the UK (where I am from) but have now transferred treatment to Japan (where I've been living for the last few years).
Marybe, I originally came to Japan with my job but ended up staying because I loved it so much. Ended up marrying (and now divorcing) a local.
Nice to meet you all. These boards have been an immense support to me. It's so good (and yet sad) to know that you are all with me.0 -
Hotcha! Marybe, you are a winner! So glad that it's going well, keep on keep'n on, hon. SUE
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Karen, yeah for only 6 more rads treatments and double yeah for having your son around to help you out and your grandson there to bring you joy. Hugs and prayers always!
Marybe, great news! Have fun in williamsburg.
Kimber, did you get your transfusion?
Dell, oh, Dell, what a lot you've been through. Hope your scans are good and the chemo is kind to you!
Rjdrobyn, thanks for posting. It's women like you and Marybe that we're all striving to be!
Hate not mentioning everyone but you know you're in my prayers. Anko said it well .... Chemo is chemo no matter where you're getting it. Have a great week, all. I'm heading to Nashville to join up with my sister and her 14 year old granddaughter. We're doing all the touristy stuff ... My onc let me skip a treatment round so I'd feel good on the trip. I've had lots of energy and have been tackling jobs around here that I haven't had energy or desire to do. Remembering what it's like to be halfway normal though I'm still huffing and puffing .... I'll be lurking while I'm away. Always go to bed with my iPad. Love to all, Glenna0 -
Hi ladies..I'm just popping on to post a quick note to wish everyone well. I've been taking a break from the boards for a while now but I do get to keep up on everyone with the email updates:) so I'm lurking from afar:) prayers as always to you all! Still having lots of issues and not feeling very good. Not sure what I posted last but I've been back in the hospital each week..but I'm trying to stay positive! Still on the abraxane and herceptin..don't think it is working last scan a few weeks ago showed progression accept for in my left lung those were stable! Two more treatments then more scans. Hugs to you all and keep the faith! HugsK
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Kimber.. did you give up the internet for Lent? if so, I m impressed.. and sorry you've been having issues.
(issues is such a great word.. one can allude to things, not go into detail and somehow convey that no further explanation is coming). 'thing' is a one of my favorite words right now.. "You're not going to do the anger thing, are you?"
Back to the chemo discussion.. abraxane seems fine to me.. hope it works for a while.. a long while.. except for some major sinus issues it is the thing. It's great for me that i can continue working... so nice to give my kids a twenty here and there because i can.. Altho they have never wanted, they've never gotten an allowance or had a bunch of cash flow thru their hands, they are as deviously thrifty as their parents.. We all enjoy buying low, selling high, know that a penny saved is a penny earned, setting limits on disposable income and keeping cash within the family. We never shop retail (except for my piano which was a huge purchase, but i got a wonderful deal on it ) and live in an area with excellent garage sales. We aim to spend 10 cents on the dollar... if something originally cost 100 bucks, we will pay 10.
it's all fun.
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Ah Apple - a woman after my own heart! Most things I buy are on ebay or in charity (thrift) shops. I hardly ever pay full price for clothes and if a dress is over £10, I won't buy it. So important to instill a sense of thrifty-ness in kids too. I just tackled my son about some money I gave him to go to out for a meal with friends yesterday. I gave him £20 after he said it would be £15 and then he let slip that it was only £5 but that he had paid for a friend too. "So where's the £10 you need to give me back?" Think he thought he had got away with that one! We tracked it down to his trouser pocket which has just been through the washing machine so the note is blowing in the breeze, drying off.
Kimber, sorry things are not going too great at the moment and you've been back into hospital. Are you still thinking of getting out to MDA when you're feeling better? Great that you are staying positive and hoping you are still getting out with your husband for nice country drives.
Laurie x
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Hello everyone. Thank you to all of you that have included me in your posts (Marybe, Soleil505, Memasue, and Glenna.) It has been nice to read all your posts and see how each of you is fighting your own challenges and yet have so much compassion and caring for others. What wonderful people you are.
I was wondering if anyone has previously been on navelbine and is now on some other chemo? In the last year I have been on Gemzar then Taxol and now Navelbine. One of things that my oncologist has always said was that there was a list of chemos that we have yet to try. I will see him in three weeks to ask how long this list is but, always the impatient patient, I was wondering if anyone is on a post Navelbine drug?
Anyway, wishing everyone a good day where you have moments that make you forget cancer. Marybe, I sure hope you had a great weekend in Williamsburg.
Much love to all of you, Robyn
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Kimber, thinking of you always. Sorry that you have had some troubles, but stay strong and stay the course - praying that you feel better soon. Just went to see my son and family at McGuire AFB and had a lovely time - as we always say: Go USAF! SUE
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Marybe, that's awesome! Glad to hear it. Liver biopsy tomorrow. Anyone wanna hazard a guess what the first line chemo will be some with ER/PR + lung, liver and bone mets who did already did TAC 3 years ago? Lung mets is main issue at the moment as I think the tumor is pressing on esophagus/windpipe. My onc mentioned something about Taxol. Is there somewhere on here where there is of list stage 4 chemo meds, diff possbile dosage schedules etc?
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Robyn.. hope you know the search function (upper left) is absolutely techically awesome.
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Rjdrobyn...for the past two and a half years..I have been on taxol...17 months...xeloda...12 months and will be starting navelbine tomorrow. When i switched from taxol to xeloda my onc was considering navelbine prior to xeloda...so possibly xeloda might be another option for you? I have also heard things like "there is a list of options" to there is a "handful of options". Each switch is upsetting not knowing how many options are left,..i too thought about asking how long the list is...but have opted not to ask...ignoring it all has always worked best for me... While continuing treatment of course. I've heard a lot of people on here talk about abraxane and had not heard of it before.
apple...where is the search function..i dont see one and had wanted to look for a navelbine thread. Is there a place where u can type in a search criteria ?0 -
Robyn, I did Gemzar, Xeloda, Faslodex and now Arimydex all post navelbine (navy bean my nurses liked to call it)
I am in Williamsburg VA right now....came with my friend Kathy for a stay in her time share condo here.....we met up with some other friends here and it's a nice relaxing place to vacation, although too cool to use the pool. Everything bloomed early this year as it did in most places and foilage is beautiful. The computer will not work at the condo for some reason so since I am addicted to the boards just came to the business office to check in. Got to put my chemo off til Thurs. so we will be heading back on Wed.
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Jill the search function doesn't show up on my computer because i have the screen set too wide so the words will be larger in my browser. it is just to the right of community rules in the upper right hand task bar.. help, members, community rules and then the white space which is search..
the function itself absolutely rocks.. it's very powerful
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Ahh..found it! Thanks, Apple. Actually on the iPad it says the word search..clicking on it brings you to the white space. I figured there must be such a function. Gotta get ready for dr appt and first navelbine infusion..also going back on herceptin too. Actually looking forward to it in a sense..missed seeing the infusion nurses weekly. My oldest son who is in a nearby rehab facility is going to try to come for the infusion too.
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Thanks Apple, Jill and Marybe for all your information. For whatever reason I am a planner and just need to know what is next.
Marybe, I sure hope you are having a good time in Williamsburg and finding a little time to just relax.
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Alyad, how was the biopsy? Do let us know. Jill, I know what you mean about missing seeing the nurses. I was very fond of my team in Scotland. Apple, its great that you have joined this thread. I am still getting to know everybody so forgive me for not mentioning more names.
Just checking in since I have my 12th Taxol session tomorrow, and...finally my hair is coming out in handfuls...I knew this would happen since I stopped scalp cooling after infusion 9 but still...how do you deal with the shock of seeing yourself bald? Half of me is fine with it if I put this entire *experience* in context, and I know that there will be far bigger battles ahead.. but still...
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Maryb, I'm happy to read this. Been following your posts and worrying about you. no progression is a good thing! i'm glad you get to keep on the med.
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Anko, the bald bit is strange but I found losing my eyebrows and having the cancer look more upsetting. Sometimes I used to still wrap the towel around my head after a shower and pretend I had hair! Little hats and head wraps are good for the warmer weather. How's Japan? Where were you in Scotland? I'm from Edinburgh but folks live near stirling now
Lx0 -
Sorry about the hair loss, Anko. I always wore wigs..For two years. Thought I'd wear scarves but never quite got the hang of it and didn't like to look like a cancer patient. Ditto Alesta... For me the loss of eyebrows and lashes was more upsetting and comes a bit later...but i learned to draw them in. Spend more time on my face now than i ever did when healthy..and according to my daughter i look better than ever. You'll find your style...cute tied scarves...caps with scarves tied around..i did do this on occasion. You look young so im sure you'll find a new style and look cute no matter!
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Ditto Alesta, the loss of eyebrows and eyelashes bothered me far more than going bald - you can't really wear false eyebrows unless you want to look like the villain in a Victorian melodrama. Recently, I have noticed a few whiskery hairs on my chin and although I have plucked them in horror (how many people noticed them before I did...) I have wondered if it means my hair might be growing again and I keep stroking a particularly shiny patch on my scalp to see if it feels less shiny and hoping for stubble.
Have a happy Easter, everyone!
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Glenna, hoping you have a great time in Nashville! My daugher attends college there and we have visited multiple times. So much to do--though I have to say, the country stars stay very well hidden. My daughter has met quite a few, but I have seen none.
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Hi, I'm new here
Starting chemo next week for what I'm preparing myself to hear is stage 4 BC
I'm a 39 yr old mother of 5 yr old boy and 3 yr old girl
Tumour just discovered in right breast is 4.6 cm, estrogen and prog positive/her2 neg
Bone scan showed singular "worrisome" lesion on T9 vertebrae
CT scan showed 1 small lesion on liver
Ultrasound showed another lesion on liver
Oncologist wants MRI to determine conclusively whether these are mets
Scared spitless and so angry0 -
Jibb
Welcome and so sorry you have to be here in club mets. I'm sure there will be a few more gals to give support and advice once the stateside mob are awake but as I rush off to work (yep, stage IV and working with similar diagnosis to yours - check my profile) here are a few things to remember:
1) Don't Google anything to do with stage IV and mets - it's out of date and will scare the crap out of you. Stick to reputable sites if you do use Dr Google
2) There is light at the end of the tunnel. The tunnel may end up being shorter than you anticipated but there is lots of stuff to appreciate along the way
3) Anger, Boredom, Clarity, Doom running right through to Yearning and Zest for life (you can fill in the appropriate blanks!) you'll be doing the alphabet of emotions right now and it's perfectly normal. The boards are a great place to vent and get support and advice. Come here often. We will be here for you.
4) You will find a way of coping with this although I know that at the moment, it is difficult to imagine that. The first few weeks are the pits. Get some meds to help you sleep and keep an eye on your mood. Anti-depressants can be the way to go.
5) Accept help from friends and family, even if it goes against your nature. They may say stupid things but they will be well-meaning!
6) Live it one day at a time - otherwise you will go mad
7) Get yourself a good oncologist, one who you trust and who has your best interests at heart and will fight your corner for you.
8) Be your own cancer expert. Ask questions here. There's no such thing as a stupid question. If you're thinking about something, chances are, someone on here has thought about it too.
Hey I wanted to get to 10 but have to hit the traffic. Good luck and see you around soon.
Big hugs
Laurie xxx
PS: Just read through your post again. There is of course the possibility that it may not be mets so while it's great to hang onto that, I think you are also doing the right thing by thinking about the possibility of stage IV. Motto: Hope for the best but prepare for the worst.
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A friend of mine sent me this link and I also saw it on the news last night. Sad to think that someone is making a profit off of selling fake cancer drugs.
http://dailycaller.com/2012/03/26/fda-issues-warning-about-counterfeit-cancer-drug
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Thanks so much alesta for your reply. I need to get in touch with Canadian Cancer Society to see if they can partner me with another mother of small ones with stage 4. This is so hard, I don't know whether to think I have years, or months left to see my kidlets...
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Hi jibb
One day at a time, especially with the kids. You're thinking what every mum (and dad) with stage iv thinks and man does that thought floor us every time we have it. There are quite a few mums around your age on the boards but not always sure where they are based. You could always put a shout out under a separate thread in the stage iv forum.
Laurie x0 -
Laurie, that's awesome advice. Maybe we should have a separate thread for newcomers.
Jibb,it truly is a horrific time but it will get better. Never thought I would say that but here I am four months down the line and I almost feel "normal" again. I'm glad you found us.0
