March 2011 chemo-lounge
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Merry Christmas and Happy Holidays to all my lounger friends. Good to read all the eventful posts. Quiet here for me. It was last year at Xmas we found out my brothers chemo wasn't working and he didn;t have much time left. We did an all-out over the top celebration for him. This year is very low key and I must admit to being a grinchy grump!!
It is ironic that the chemo that failed him is what I have recently switched to. I was on Kadcyla-formerly know as TDM1-and after 5 tx I developed terrible neuropathy in my feet. From the ankles up I felt great but I just couldn't take it any more. For the first time in 3 years I told him we have to stop. They really aren't sure if it was a delayed result of a whole year of Taxotere or the Kadcyla itself. We tried several drugs to try to reverse it but it turns out I am sensitive to central nervous sytem drugs. Good thing I haven't needed anti depressants before because the 2 we tried made me absolutely nuts. They are one of those things that they use for off market benefits. In some peope it helps with the tingly nerves-couldn't do it long enough to see. The one drug I wanted Lyrica was turned down by the ins co 3 times. Cracked me up-they are well over a million dollars invested in me and wouldn't pay $300 for a drug to relieve SEs? I am now on my 9th chemo-Gemzar. It is a weekly dose-hating that part of it. Most people do 3 weeks on then a week off to get your counts back up. It hits the platelets in most people. I have done 3 now and still have good blood. he let me have today off because of the holiday bit will be back in the chair New Years Eve.
For doing 3 straight years of chemo I really do look and feel great. You wouldn't know I had cancer except for the bad hair. I am still working full time-usually 50-55 hr a week. Not ready to retire just yet. probably when we have our next contract in fall of 2015. At making it 3 years as a Stage IV from the beginning I am way ahead of the survival stats. Less than 20% get there. Shooting for that 5 year mark-that is in the single digits. I still have quite a few chemo options left but none of them are rated very long before progression. The year I got out of Perjeta really was a blessing-if a year of Taxotere could be called that. Latest scans were stable-some regression would be good but stable is good too.
You all are beating the odds also. Getting to that magical 3 year mark without recurrence is fantastic. It is on my prayer list every night. God keep my cancer buddies safe and strong and healthy.
A special call-out to you Penny because I am so bitterly jealous. It is summer for you and I have a strong case of sunshine envy. Post me a picture of a flower out of your yard. I think last year it was a frangipani (sp?). I bet you were a beuatiful mother of the bride.
Happy New Years to you all. I think of you often.
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Happy Christmas to all my friends, lets hope 2014 brings everything good.
Love your signature Divine - I was explaining to my daughter the other day that my life is wonderful because a) I have a very lucky, marvelous life here, and b) I have been scared enough to really understand how amazing it is and enjoy every bit of it. I had almost all the family round for Christmas day from my 83 year old mum down to my 18m grandson - it was magic.
Maria - love to you, a friend in the U.S.recently had a friend diagnosed and I have pointed her at this site - it was so much help.
Lily - your strength is an inspiration - but for goodness sake cut down on the work! I will attach some pictures below, my frangipanis are a bit slow coming out this year but are still lovely. Imagine you are floating in the pool, when you look up you see the frangipani flowers hanging over the pool, and all you can hear is the waterfall, and smell the sweet fragrance of the flowers.0 -
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Beautiful flowers! I usually read these messages on iPhone but realized I needed to jump on the computer to see the flowers! Well worth it...
Lily, I second the motion to have you work fewer hours. Very glad you are looking and feeling good and are STABLE (what a beautiful word!!)
Love to all who read this.
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Hi everyone and Happy Holidays! Every holiday now is a good one! I count my three years officially at the date of my third biopsy, which actually found and removed the tumor. That will be January 21.
Penny....we have had weddings on December 29 and 30 the last two years. Lots of fun stress!
This year I decided that my sons girlfriend needed a handmade stocking like the ones my aunt made for us decades ago. So I ordered an embroidery kit of one. It took me four months of sewing and literally three weeks in December from 6 p.m. To 11 p.m. Of continual sewing to get it done, but it is so cute! I'm going to spend this years dressing up the other ones, lol.
I am glad to have a little downtime now to reflect and appreciate what a great season it was. Wonderful family, friends and many new memories made.
Happy New Year to you all and legs hope it is another one of many more!
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Oh Penny I so want to be you!! What a beautiful place you live in. Thanks so much for the pictures. It makes me breathe deep and sigh. I had a dream last week that I was sitting out in the yard at dark in my adirondack chair looking up at a starry sky with fireflies everywhere and the air smelled like jasmine. Maybe your pictures insired that.
Had my tx yesterday and had a good talk with my doc. I have to see him every week now-guess it is a law that you see a doc before you get chemo. My counts are staying great so I will go weekly unless they drop. He is talking about throwing in the odd kadcyla tx every now and then. That was the drug that caused my feet to go nuts but not until I had 4 of them. I am letting him be the boss for now. I will be at 3 years later this month. He saw both me and another Her2 lady that started the same time as me. We are both the picture of health and he was beaming ear to ear over both of being there at the same time. She just had a scan and is now NED-pretty remarkable for someone 3 years into it. She does have a brain thing that they are going to gamma knife but it seems to be no big deal. The funny thing is when they brought her tx bags over and asked her her birthdate-she was born 3 years after I graduated high school-felt instantly older.
Happy New Year to all of you-and healthy one too.
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I am amazingly lucky to live in Australia - its a beautiful country, although sometimes in an awesome and quite savage way - they are expecting bad bush fires in parts of the county again this year. We are fine where we are, and my garden is my little sanctuary - I am so happy there. I will have a lovely (but quite tiring) week this week as I am looking after my grandsons (1 and 5) while my daughter is away.
So good that you are stable Lily - your doctor sounds wonderful. 3 years is excellent - no wonder he is pleased with you!
On a sad note - I was at the funeral of a friend yesterday. He was fit as a fiddle but was hit by a truck backing while he was on his motor scooter. Such a random accident. At least we get to fight this, and it does make me realise that we should just get on with it and enjoy every moment, you never know when your time is up!
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Penny, you are right about getting on with things. Yes, it's good to acknowledge difficulties and deal with them, but then at some point one should move forward.
In the three years since diagnosis, there have been several people I know who passed away suddenly who hadn't had health issues. Also, the nurse at the school where I work has a 7 year old son diagnosed with an aggressive leukemia. He's been in the hospital since September, going through chemo and now getting ready for a bone marrow transplant. I can't imagine going through that with a young child.
Btw, my niece who lives in Atlanta, Georgia is marrying a man who's from Australia. We love his accent. They went back to Australia a month ago so she could meet his relatives and of course loved the trip. I'll be going to Atlanta this spring for the wedding, looking forward to it. Also, towards the end of summer, DH, ds and I are taking a cruise to the Bahamas, our first cruise ever.
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Love hearing updates from all of my lounge buddies! Happy New Year to all! So we have all made it three years and that is great news. I can't wait to say it has been 5, 10 and 20 years for all of us!
We are getting hit with brutal weather here in Chicago....the high temperature will be only -8 on Monday. We are getting an additional 5-10 inches of snow tonight and everything is already covered with snow. Just got back from the grocery store....now I don't have to go anywhere until Monday. Yay! Hope all of my other Midwestern friends stay warm and safe through this bad storm coming through!
Just wanted to wish you all a HAPPY 2014! Let this year be full of health, peace and love for all!!!
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Happy New Year everyone! So glad to hear everyone had a great holiday. I can't believe it's been three years next week for me since I was diagnosed.
Lilylady-You are such an inspiration! As someone who experienced severe neuropathy in my feet, I can relate to what you went through. It was pure hell for a while. It is still there, but has gotten a little better over time.
Penny-Such a wonderfully beautiful place you live in!
Glad we are starting to thaw out from all of that cold weather! Kids were going stir crazy being inside all of the time.
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Happy 2014 girls...I too cant believe its been 3 years since we all signed up here, scared not knowing what to expect. What a joy it is to be able to come back and post that just had an MRI and am still NED. Things are going well for me, I am happy, at peace, and living life with a grateful heart. Its nice to read that a lot of you are doing the same. Hugs to you all
Kymn
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well, as of yesterday, I am three years with my buddy, NED. Still knocking on wood and throwing salt over my shoulder!
Here is a toasty warm beach picture. It is so cold here! I want to go back.
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Yay Fluff!! You look great...and warm! A far cry from the freezing temps here in Chicago. Two weeks ago it was -18 degrees!!!! Yikes!
Kymn - you look great in your picture! Wow you look good with short hair!!!
Glad you are doing well and it's so nice to see you check in with the gang!0 -
Well, I am back in Indianapolis now, so not much different from you. I hate it. And we have more snow on the way in the next few days.
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Kymn, so glad to hear from you; love the dark hair. So glad to hear of the NED results for both you and fluffqueen.
I'm in Ohio and we've had some bitter cold, but I take all weather in stride, regardless of what Mother Nature brings.
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Hello ladies! Can't believe it has been almost 3 years!!!! Super stoked though! Feeling great just ready for summer! I am in TN and we don't have much snow but it has been very cold thanks to the polar vortex. Hope everyone is doing great!
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Hi ladies- Just checking in with all of you. It's so wonderful to see all of the great posts. Everyone looks happy and beautiful and healthy. Penny: I envy your summer weather! Winter has been brutal here. Too much snow!
Three years ago today is the anniversary of my surgery. Personally, I count from my diagnosis date, so I'm really more than three years a survivor
I've gotten a lot of my anxiety under control, but for some reason I find myself more jealous than I ever was pre-BC. I don't know if its age or hormones or what, but I am probably driving my DH crazy. He is truly a saint and would never do anything to hurt me, but I get this green envy anytime he is around attractive younger women (one in particular). Am I crazy, or what? I share it with him and he is happy to reassure me, but I need reassurance too often. It's eating away at me, and there is no basis for it. I just don't know what to do with it.
Sorry to be a downer here, but I know you ladies will have wisdom to share.
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Wow...it's been awhile since i've checked in !...passed my 3 year mark on January 27th and have "graduated" to seeing my ONC every 6 months !
Trying to improve the diet and exercise as always but it seems when life gets busy and stressful the good habits seem to fall apart !!! I remember seeing a news report not too long ago about a study on Mammograms that was done in Britain claiming that in general, Mammograms did not need to be done for screening as often as currently recommended...the whole story made me hopping MAD ! (ask my husband)...all it would take is for someone listening to that on TV to decide to postpone their Mammogram or not have it all. My tumor was found on my yearly Mammogram...I would have never felt it. Now that Pap Smears aren't done every year, are Mammograms next ? I knew I could vent to this group !...let me know what you think... 0 -
stilts, I agree I don't get it. Mine was deep, couldn't be felt, and was found on a mammogram. And, unbeknownst to me, apparently there had been some scattered calcifications in the last one that they opted to watch and just sent me a card saying I was normal.
That still makes me wonder if I should pursue it legally, although they made it sound like it was common. What bothered me most is that I had let the mammogram stretch to 18 months which I never would have done if I had any idea that there was something to watch.
Here's to three years and at least 30 more! Waiting on the results of the Pet scan that I talked, my onc into. Poor guy, I almost feel sorry for him, lol. Bloodwork was good, so hope this will be too.
"May the roof above us never fall in, and may we friends beneath it never fall out." Happy St. Patrick's Day!
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Lily - how are you doing, it must be spring where you are now?
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Penny, I have some concern regarding lilylady as she hasn't posted on the boards since January 12, and she usually posts something somewhere once or twice a month. If any of you ladies from our March chemo lounge know how to reach her or know anything about her, I'd greatly appreciate hearing from you.
Thinking of all of you and remembering how helpful everyone was during those rough days of chemo.
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Yikes, that seems odd for Lilylady to not post anything in months... I don't know how to reach her directly but someone here hopefully will. I've been picturing her gardening so I appreciate that you (Penny) thought to give her a shout out. Hopefully we'll hear something soon. Hugs to all.
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Hi All! Happy spring! Well for some of you maybe it came much earlier, but in Chicago it just arrived! Things have been busy here with the kids. My exchange student goes home in two months....I am already dreading that day. We love her and don't want her to go back......we are too attached to her! What a great girl. We took a spring break trip to Florida a few weeks ago and had great weather. It was a fun but relaxing trip. This week is my son's 1st Communion. Time is flying by! He was 4 when I was dx. I am working a ton in my gardens......too overwhelming. I feel like I will never get it done. Oh well....I enjoy working out there and planting more flowers.
How are all of you? I too have wondered about Lilylady. I looked through everything but I don't have any contact information for her. I hope she is OK. I wonder if anyone on the Stage IV boards has a way to contact her??
Post some updates ladies......just think - three years ago we were all doing chemo. Gosh it feels good to NOT be doing that...
Hugs to all!
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I have asked if anyone on the stage iv forum knows anything about lily, but no one does. I'm not even sure of her first name; would anyone here have that info?
I will share a photo. We live 50 minutes from Oglebay Park in Wheeling, WV. They have some nice activities throughout the year. One I always heard about was their array of tulips in the spring. This weekend, DH and I finally made the drive to see them; a visual feast. (I liked the photo, so I cropped it to update my avatar).
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Great picture Divine! Everytime I log in, I try to check this thread to see if Lillylady has posted as I think about her often. I hope everyone is well! Had a gyn exam today. He does a vaginal ultrasound every six months to check the uterus as I am on tamoxifen. OK, either tamoxifen or menopause have caught up to me, because while the ultrasound wasn't terrible, the regular checkup was PAINFUL! He said there is definitely atrophy. Guess I need to get more busy with the DH, lol.
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Beautiful photo with the tulips! Nice to hear updates from folks. I really hope Lilylady chimes in soon.
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Hey all! Glad to hear everyone had a good spring and is looking forward to summer. I hope someone hears from Lilylady soon. Makes me worried she hasn't checked in here or on the other boards.
I am having a hard time with my Lymphedema again so I was prescribed a Reid sleeve. Anyone have one? It's supposed to be huge.
It's for nighttime, and I also got a new sleeve for day. Hoping it arrives and gets fitted soon. 0 -
Ladies, I just wanted to take time to check in and say hello to all my chemo-lounge sisters. I think of you often and I remember how you ladies kept me sane three YES three years ago. It seems like a lifetime ago. I am so thankful to God I am cancer free and i get a clean bill of health each time I see my onc. I am scheduled to take a colonoscopy and bone density test in June, other than that I see my onc every 4 months.
I too have wondered about Lily. A best friend of a co-worker was dx stage IV bc in September of 2012. She is 38 and was devastated, but she is doing very well now. When she was first dx her doctor had the nerve to tell her she only had about six months, so she was given the quality of life speech. I am so glad she is still doing very well. I always tell her about how well Lily and DivineMrsM are doing and she is always encouraged by that.
Well ladies, I'll keep checking in and hopefully we hear from Lily SOON. In the mean time take care and I hope everyone continues to improve and remain cancer free.
(((( HUGS )))
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