March 2011 chemo-lounge
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Lily...I am so glad that you don't have many side effects witht he new drug, and hope that it makes a huge difference.
On the money front, I have to say go for it. That was part of the reason we went to thailand last fall, and now, we are going on an alaskan cruise in two weeks. I have seen friends die quickly, and my mother in law died from originally was thought to be alzheimers, but on autopsy of her brain, turned out to be a neurological disease in the same family as Huntington's and there is a 50% chance her kids will have it. Two are participating in a study and found out they carry the gene already. It starts to show up mid to late 60's.
That means I could potentially have ten good years left to do things with my husband, so that is my plan. I will just have to sit and be broke looking at my pictures, hopefully when I am 80.
Penny, I can't decide what is worse, fear of the unknown by not testing or fear of the known.And the Johnny Depp quote is great.
I'm putting "Oh How the Years Go By" on the jukebox. I love the lyrics, and you all really helped get me through.
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Happy end of July everyone! It is nice to see all of the updates!
Lily-I am so glad you checked in! Go out and do things you have always dreamed of doing, have fun, and spend your money on YOU!
Just had a check up this month. Things are good. Did a tumor marker test which of course made me a nervous wreck, but it was fine. Still have Lymphedema and all of this rainy miserable weather has helped since it hasn't been so hot this summer, I can actually keep the sleeve on most of the time. I am still doing accupuncture for the neuropathy in my feet caused by the chemo on a maintenance basis. It is SO much better. Oldest went away to Girl Scout camp for the first time ever this week. It was hard to leave her there!
But we are managing and can't wait to see her when she gets home on Friday. Hoping to have a quick getaway to the beach before another school year starts in less than a month. 20th high school reunion was last weekend and although I couldn't fly home for it, I lived long enough to see it happen, and am so thankful for that!0 -
Glad everything is good ColoDisneylover, my lymphedoema is much better - I don't wear the sleeve much at all now unles the arm starts to ache.
Today is my husband's 60th - I have a huge weekend planned - he has been amazing this past 2 years. Boat trip, family party, wine tour. I may exceed my alocohol allowance this weekend!
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It's been a busy summer for me...almost too busy. I've had an unusual number of fun family get togethers, just one of those years for celebrating weddings, births, ect. Also did some traveling. Went to a concert, going to a preseason football game next week, still heading to Virginia Beach later this month. I have summers off from work (as a teacher's aid) so I try to make the most of it. A few things I wasn't able to find time to do.
I forgot to plan on the unexpected. I actually went into the summer months thinking it was gonna be all smooth sailing. Then our poor cat got sick and out of the blue we had to have him put down. We all still feel crappy about it. Then my laptop got a virus and it took several weeks to clear up, which was beyond frustrating. About that time, tho, we upgraded our internet. We didn't realize how behind the times we were in that area and had to take the time to educate ourselves on different options. Sat around for a day and a half waiting for the guy to come install the new line. Just more stuff to deal with on top of what I'd already over-planned to do.
Will be heading back to work after Labor Day. Overall, I feel like I'm making the most of the summer. It's time to reevaluate some things, tho, and slow down a bit.
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Glad to see everyone is taking some time to enjoy the summer. We just got back from our Vancouver/Alaskan vacation. Gives a whole new meaning to the word "vast." Cruise part was ok, but the excursions we did and the scenery were incredible. I went dog sledding on a glacier, climbed around on an icy slippery glacier with crevices all around us, saw icebergs, bear, bald eagle and more. Just beautiful.
Now it is time for all my quarterly/semi checkups. Got the ok from the ob/gyn who does a vaginal ultrasound every sex months while i am on Tamoxifen. Short visit (I hope) to BS tomorrow morning, to get the ok from an ultrasound after a moment of paranoia when I found a lumpy area along the scarline and couldn't convince myself it was just scar tissue. Radiologist called day before I left to tell me he thought it was scar tissue, but to keep my appointment with the BS when I got back. That wasn't exactly reassuring, lol.
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Fluff - Alaska sounds amazing - definitely need to add it to the list, glad you had a good time. I hope the check ups are all clear and out of the way now.
You all sound like you have made the most of your summer. I am away at presenting at various conferences in Australia at the moment, and we also had a week's holiday in Moorea (just off the coast of Tahiti) - it was absolute paradise, and very restful. As Divine says, I sometimes think we rush around trying to fit too much in and its great to relax.
Lily - hope all is OK, we all think of you frequently and hope you are kicking its butt
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Penny,
Tahiti is at the top of my list of places to see, along with Australia and Greece.
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Thinking of all you girls and hoping you had a good summer !!! Hot, hot, hot in Minnesota right now...bring on the fall weather !!! I am now on a every 4 month schedule with ONC checkups and just had a follow up bone density since I've been on Arimidex for 2 years. Everything seems to be stable and I'm feeling good. Had been really diligent about exercising-then my knees started hurting (which I blamed on Arimidex)-kinda cut down on exercise this summer and they feel back to normal...kind of hard to get re-motivated !!! Looking forward to a trip to L.A. to see my older daughter at the end of the month...we're planning on going to a Seafood Cooking class, lots of shopping and brunch at the Beverly Hills Hotel...I'll let you know if we see any stars ! Take care everyone- you are all stars to me !
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Hello dear friends,
It has been a long while since I have posted-I had been avoiding this site for a while beccuase it just got overwhelming betwen the Stage IVs and their bad news and the number of newbies so scared and needing help. Opted out for a while.
Seems like some of you have had a great summer-glad for all of you and wishing continued good health to our group.
After a year on PHT (Perjeta, Herceptin, Taxotere) I got progression In June and moved on to Kadcyla. It was fomerly known as TDM1 during trials. It was approved in Feb for Her2. I had been struggling with the PHT for months-each tx seemed to destroy my sytem just a little more. My stomach had reached a point where I was about to tell him I just couldn't do it anymore but the bad scan made the decision for me. It was a learning experience for me. In the future i will NOT stay on a drug that makes me feel that bad. I had lost over 30lbs and was so weak it was pathetic. I was still working full time missing a day here and there but there was no joy in my life. What is the point of extending a life if it is miserable. I am a tough cookie but a whole year of taxotere made me realize there is no reward for seeing how macho you can be. I am grateful for getting a whole year out of PHT-I was stable for the whole year-no regression but no growth either.
I am fighting with my Onc right now over several issues one of which is he wants to scan right now. they have already made 2 appts which I have cancelled. this Kadcyla is is amzing as far as SEs go. First 2 tx I got dizzy for a couple of days -3rd tx nothing at all. Also it is a 1/2 hr infusion as opposed to almost 5 hrs for the other. I have gained back 15lbs in 9 weeks (trying to stop now) and my hair is growing like a weed. Today I saw eyebrows. Food tastes so good. Stomach and bowels are normal. I AM NORMAL. The difference between trying to act normal and actually being normal--I just can't tell you how great that is. I can go for long walks (without wondering if there is a bathroom). I go to concerts, eat out, I even went out on a boat. I would never had considered these things beccause I was so messed up in the stomach. Turns out they think I have cancer in my stomach. It lit up on the PET but the tests they ran were inconclusive. It isn't a usual place for BC to go but not unheard of either. I already had it in the lymph nodes there. Anyway about the scan-he says we can't afford for this to get ahead of us and my track record on targeted drugs isn't good-I say I don't want to know if it isn;t working. I want to delay the scan til late OCt. I have things i want to do and I want to feel good and strong thru the fall. He always says he is a fan of patient autonomy-I am exercising it!! I get my next tx tues and I figure there is going to be a conversation because I was supposed to go yesterday for the scan.
Mostly my cancer has been the same places either shrinking or growing all along-this last scan was the first time significant stuff showed up in new places. I am putting a lot of faith in my new drug. My reading seems to me that it either works great or not at all. My stomach quit hurting-I am seeing that as a postive sign.. but that could just be the Tax is finally all out of my system.
Let me tell you about my amazing hair. My niece said it feels like "stuffed animal fur"-very soft. Last time it grew back (2 years ago) it felt like an extra strength Brillo Pad. It is about the color of a brillo pad but doesn't look too bad with my tan. It is pretty thick except for the male pattern baldness part-on either side of my widows peak it is thin going back a way. hoping to get enough for a comb-over soon.
I am going to keep working-I still really like my job-for as long as I can. I am not ready to live on retirement wages. I have been broke for a while but am working a little extra right now and that led to a bout of retail therapy that some of you no doubt can relate to. My poor car has needed tires for a while but I couldn't come up with the $500 I needed. I got to work some overtime and made the appt..it was almost right next to a DSW (Designer Shoe Warehouse). I decided to kill some time there while they worked on my car. 5 pairs of shoes later...I had to put the tires on the credit card which I had been avoiding all along. I do not know what came over me. I am NOT a shoe person-unless they are tennis shoes. But they had just stocked for fall and had all the sizes and widths (I have a big fat foot) and I usually can't find anything I like in the size I need. I am proud that I DID get what i went in there for. I needed a pair of navy heels to go with a dress i was wearing to a wedding-I am still grinning it made me so happy. I took them to show my Mom and she ended up stealing 2 pair of them. I told her that was her birthday present. I am returning 1 other pair because the heel is just too high for me-but I am not leaving without a replacement for them. By golly I deserve it. I also just got the cutest shoes from HSN-most of you will remember Earth Shoes with the negative heel. There is a giuy selling something like it on HSN and it was the special of the day..they feel so good and look adorable-even on my big feet. Now if I can stop gaining weight and get a pair of fabulous jeans I will be all set.
Do we have any beauty mavens on here? I have developed a turkey neck-when I was heavier I had no wrinkles-the fat kept them filled out. I don't have wrinkles on my face but my neck is scary. Anybody use a wrinkle cream-drugstore variety that they think works?
Good talking to you. I will report back after my tx Tiues. Hopefully he won;t fire me as a patient.
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He won't fire you - your Onc loves you, lilylady. Your shoe tales had me laughing out loud. Good for you for calling the shots. I hope this new drug works wonders for you. Normal - yippee! You are awesome ,and I hope your Fall is too.
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Lilylady....so glad you are feeling good! I had a wedding on December 29. Bought this really sexy pair of high heels (4 inches) to go with my dress. Legs looked amazing. After 30 minutes, the hurt sooooooo bad! I made it through the evening, but will never wear them again. I just admire them.
Hope everyone is doing well. Just saw all my docs (PS in October) and all appears well. ONC said he would do whatever tests I want in March at my 3 year mark that are covered by insurance, which is a HUGE step. I think it means I don't have to wear him down.
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Lily, I am so glad you posted an update. I am glad you are feeling better and especiallly glad you are seeing hair! I am sure that feels long over do for you. At this point you have to do what is good for you. If waiting on the scan allows you some down time and you feel strongly about it, then go for it. This is a tough road and sometimes you just need a break I am sure. Just know we are all on the sidelines cheering you on! The lounge girls have been known to get a bit crazy after a few cocktails!
Fluff - it's hard to believe it has been 3 years! My three year is the second week of December. Sometimes it seems like yesterday. Sometimes it seems like a lifetime ago. There are some days I still wake up and think "OMG, I had cancer!". Sometimes it seems like it never really happened - but then I see myself in the mirror....back to reality. My docs still only do bloodwork. No other tests or scans.
Stilts - post pics of your CA trip! How fun. The cooking class sounds cool. Do you need me to kick you in the butt to get you exercising again??? LOL! I laid off for a while due to an injury, but I am getting back to it and even started working out with a friend a few days a week. We push each other and it's more fun to do with someone.
Penny - Moorea sounds amazing. I have always wanted to get there....maybe one day. I have always wanted to get to Australia too.
Life is busy here. Loving having my Italian daughter. We all adore her. I could not have asked for a better addition to the family. She is sweet, smart and affectionate. She is enjoying all new things American: s'mores, camping, Lake Michigan, high school football games and especially bagels! It is super fun showing her all of these new things. Baci turned 1 this week. Can you believe it? My little fluffy baby is growing up! We adore her and she has really grown attached to Costanza. She goes and wakes her up for school every morning. It's so cute! I am busy with my fitness PTO committee at Jayden's school in addition to raising funds for my Strides Against BC walk next month. I recently got trained to be an ACS Reach for Recovery mentor so I will be helping more BC gals get through this mess. Life is good and somewhat normal again. Hoping all of you are doing well. If you are reading this, post a quick update. I miss my lounge girls!!! Hugs to all!
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I also was thinking about how I miss keeping up with all of you girls. I am a big facebook person. If anyone wants to be facebook friends, send me a PM and we can exchange our real names and connect that way. I know we don't post much here anymore, but I would love to keep up with you guys! I hope to get some PM's from you all soon!!!
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Lily - really pleased that you are feeling good. I think its fine to just enjoy life without knowing for a while. Love the retail therapy. You can never have too many pairs of shoes!But Fluff - there is no way I could wear 4 inch heels even for 5 minutes
I am way overweight after the Moorea trip - all that French cooking was so good. I will have to be really good now and lose it all again - or I won't get into anything for my daughters wedding in November.
Our Lily was one year old late August, much like Baci. Still wondering when she will settle down a bit - she is so big for a Goldie.
Maria - so good that you are helping other people through this.
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Lily- It's GOOD to hear you are feeling well. And hair, yippee!! I completely understand your desire to put off scans while you feel good. Enjoy it. And don't let anyone bully you about it. I do hope this new chemo is working wonders for you. Thank you for the wonderful update.
fluffqueen: yeah for your scans! I know you have fought tooth and nail for them; it's about time your onc gives in. I look forward to hearing the good results.
mdg: You are an amazing person. So giving in so many ways! I am friends on Facebook with a few of the ladies here, so I will PM you so I can keep up with your hectic life!
penny- I'm glad the world traveling has been wonderful. I'm with you on the heels: I don't know if I have ever had a pair of 4-inch heels on before. I hear my feet crying right now as I think about how much it might hurt
I've been doing well. I was having some anxiety issues that I told you all about. I am still on a scrip for that, and I went to a few sessions of accupuncture as well. It's hard to say what helped because I changed A LOT of things at once: added herbs, NO COFFEE (whimper), better diet, more green tea. Also, the cooler seasonal temperatures have likely been enormously beneficial. Much of it is tied up in my hot flashes. Apparently they are much more frequent than for many women, which I didn't realize. All summer, I had a hot flash every 50-60 minutes, all day and night, every day, many of them leaving me drenched in sweat. So, those have decreased, and my anxiety level has accordingly gone down. Who knows. I do know that tamoxifen is a blessing and a curse...and I completely understand why some women stop taking it.
It's great to see you all here doing well and living life. Hard to believe how much time has gone by!
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Maxine, I am right there with you on the hot flashes. I think mine were about every 30 minutes this summer. Alaska was wonderful didn't have too many and now with the cooler temps, they have eased up slightly. I bought the chillow pillow at Walgreens. I love it! Feels so good to put my head on it, I am going to get another one so when I wake up and the pillow in use is warm, I can swiitch to another one. A friend gave me the frogger cloth that I use when i work out. Helps immensely too. So, I have some solutions, but I am damp all the time, lol.
And it is what causes me anxiety also, especially when I feel one starting and I am not near a cold driink, a cloth, and something to fan myself with. when I am at macys, they see my face and arms turn beet red and start handing me the flyers to fan myself with immediately. It is pretty funny.
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I have a pretty fan that I just keep with me in my handbag - much easier than looking for random brochures
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http://www.sltrib.com/sltrib/opinion/56888224-82/cancer-breast-early-komen.html.csp
If you have time please read this article written by a Stage IV named Bestbird. An appropriate start to Pinktober
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How dare that women take a salary like that from people's donations - its outrageous. It was important to read it though. I have a 60k walk over 2 days in march next year - but I am now going to make absolutely certain that the funds go to research not people's pockets!
On a brighter note - its Spring in Perth, the wildflowers are out, and so is the sun.0 -
Hello everyone! I hope you are all well. Is everyone getting ready for the holiday next week? Hard to believe it's almost here. Can't believe it's almost been three years since I've been diagnosed. Looking forward to the holidays and spending time with my kids and family. Oh, I was able to put my hair in hot rollers now that it's pretty long and I'm getting my second real haircut tomorrow. Not just a trim, so hopefully it will be cute! Haven't lost any of the curl, so I guess I'm stuck with it.0 -
My beautiful daughter gets married today! There was a time I did not think I would be around to see it, so this is now doubly special. Whoopee!0 -
Wow, oh, wow, Penny, isn't that something? Congratulations on your daughter's wedding and how special it is to you.
I, too, am surprised it's three years since our diagnosis, the time has flown. I had a Pet scan yesterday and preliminary results show I am still stable, and it is nice to know just before the holidays. I feel like I am hanging in there pretty good.
I will have the Thanksgiving 'feast' for about 15 people at my house, everyone brings a side dish or dessert, and I make the main courses. I'm also getting some Christmas shopping started. Beyond Christmas, I look forward to the wedding of my niece next May and have booked my very first cruise to the Bahamas with my husband and son next summer. I have paced myself, still work part-time and have my ups and downs, but I have made sure to pack some good living in the last three years with plans to continue.0 -
Congrats Penny! What a great day!
I had a mammogram last week and the report showed my favorite phrase " no evidence of disease". It will be three years in January since my diagnosis. I've never had a pet scan but still see surgeon and oncologist every six months. With triple negative that three year hurdle is especially important.
I am enjoying temporary retirement but miss being at school with kids and co-workers. It was admin and politics and the micro-managing that I could no longer tolerate. I do enjoy setting my own schedule and subbing on occasion. I am still coordinating our local mentoring program, so am at school once a week for that.
My best news is that I am going to be a grandma in May! I still think I'm awfully young yet (53!!) but will certainly try my best to step up LOL. The trick will be that my daughter is due the same day that my son graduates from high school (Mothers Day). Hopefully she can hold off a day or two one way or the other.
HAPPY THANKSGIVING, FRIENDS! Still thankful to have this group.0 -
so nice to hear about everyone's good news!0 -
Dropping in to say Hello to everyone! Can't believe we are almost 3 years out!!!! Yippeee! Penny congrats on your daughters wedding!
Hope everyone has a Happy Thanksgiving next week! I get to cook for 15 people also! Good thing a couple of them are helping.0 -
Penny, wonderful, wonderful news! Congratulations on a very special day.
Husker, congratulations to you, grandma! That is just fantastic.
So glad to hear good news here. Cheers to three years, ladies!0 -
Congratulations Husker - being a grandma is wonderful - I have Jen's 2 boys while they are on their honeymoon (yes I know that's not the order we did it in generally -but they are happy so who cares) - I am having a lovely week looking after them0 -
It seems I Missed recent the more recent posts. Great to hear how people are doing! Penny, it's now a month since your daughter's wedding! Hope everyone will have quality time with family. Lilylady, how are you?! You're in my thoughts and prayers. I know it's hard but you have been tougher than the cancer and the side effects, thank God. If you can, send an update. Merry, merry and happy, happy to all!
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Merry Christmas to all who celebrate the holiday and best wishes in the New Year to all of us. I just realized it's been three years to the day I found the lump. This will be my 4th Christmas since then. I find that amazing and wonderful and I am doing good. God bless everyone.
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Nice to see some posts on here. Happy Holidays to all my lounge buddies. It has been three years for me....three years ago today I had my lumpectomy. Great xmas gift hu? I am pretty sure I will get something much better this year!. Wishing all of you the best...a great holiday, happy & healthy new year too!!!
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