March 2011 chemo-lounge
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Happy St. Patrick's Day everyone! I realized this morning is the four year anniversary of my first chemo dose. Wow, things have certainly changed since then.
I am three months into taking Femara. I am really struggling with joint pain and aches. I have a hard time walking down stairs at night because my ankles hurt so much. My knees are hurting and so is my back. My entire body feels like its swollen up. I have been really thinking about going off the drug and not taking another. Am I crazy? Someone please give me some advice who knows what I am going through.
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Try Cymbalta. Thats my advice. I had really bad joint pain on Arimidex. I had been on Cymbalta through chemo for anxiety. My doc prescribed it because it does double duty as anxiety relief and also joint pain relief. It helped me tremendously. Very little joint pain now.
If you good arimidex and Cymbalta, there is a lot of info out there.
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Thanks, Fluffqueen! I really appreciate your input. I will look into it. I am meeting with my oncologist next week. One last question. Should I expect the Cymbalta to cause weight gain?
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cool-I think it can, although that isn't the case with me. I have gained weight from the arimidex, but no more since starting Cymbalta. I didn't gain any when I had it the first time either
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Hi Fluff - no the cyclone was well away from us. We don't get much of that down in Perth. Our main issue down here is bush fires.
Sorry about the joint pain Colodisneylover - I have been on Arimidex all the time. At the beginning I had the stiffness / joint pain but it has pretty much gone now, it probably took about 6 months. I would personally give anything 6 months before dropping it.
I did get a wrist problem - in the end I got a Cortisone shot and it is fine now.
Hope your oncologist sorts it out.
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Checking in...with wonderful news... I am going to be a grandmother in June !!! (my first). Thinking back to one of my early conversations with my ONC..."How long do you think I will be around?"...he answered with..."I believe we'll be sitting here at one of your future check ups talking about your grandchildren !"...
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stilts- so happy for you and your family!!! You will have an amazing summer!
Colo - how's your pain now? Hoping it's better. I'm stiff and wonder if it's from arimidex. I'll stand up and struggle to fully straighten my back. Feel ancient and prolly look it too!
Lily - praying that you are holding steady and able to enjoy your blooming garden
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silia-that's great news! I confess that when joint pain settled in pretty seriously, I felt like you. I spoke to my ONC and he ok'd going on Cymbalta. I'm on the lowest dose and it made an enormous difference, other than the bottoms of my feet hurting yet, most joint pain is gone
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Stilts, congratulations on your soon to be new role as grandma! What do you think you will be called? My grandkids are ages six and four and are the best gift ever. June is right around the corner, bet you just can't wait.
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Wonderful news Stilts - as Divine says, grandchildren are such a blessing - so much love and fun!
Glad the joint pain is better Fluff.
Lily - hope you are enjoying Spring in your garden.
Just got back from a 4 day walk on Maria Island in Tasmania with my sister. Did fine on the walk , but then fell on the rocks - pretty bruised down my side but no permanent damage. So pretty there - walking for miles down this beautiful beach.
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March 2011 Chemo Lounge comrades, four and a half years ago my only son (I have an older stepson) was in high school when I received the bc diagnosis. It's almost hard to recall the shock and fear I felt at the time. I remember going on college visits wearing a wig while reeling from the effects of chemo. I remember having a large, beautiful hs graduation party in the backyard six days after the final chemo treatment. I can remember helping him move into his college dorm, an hour from home. I remember the uncertainty of not knowing if I'd be here for his college graduation.
Earlier this month, he graduated with honors and received his bachelor's degree! I was so deeply grateful to be around to celebrate. He was hired by the company where he interned, in the city where he went to college, and we helped him move into an apartment. Gosh, did those college years FLY!
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It has been a very long time since I have posted here. It might have been in early Dec when I was in great shape and feeling so optimistic in spite of the brain tumors. Since then it has been nothing but a rapid downhill slide. More brain tumors were found and treated In Jan and yet another chemo failed so on to something different. It is a very old drug-14 years old and worked like old timey cancer drugs did. It just kills everything. It is called Halaven and it ruined me. I had to retire from work-which has been so hard-because I could no longer walk or drive or use my hands. I got neuropathy so bad I became chair bound. My muscles in my arms and legs refused to work also. I had to have a stair lift installed and was using a walker or a cane. Life really sucked.
The drug was working but I decided it wasn't worth it. I have discontinued treatment for now and after almost 3 months I can walk some and actually type on the computer also. Gardening is probably a thing of the past because I am unable to get down to ground level-unless it's because I have fallen because I have some balance issues. I know what it is like to be an 8o year old woman. The giant grocery stores make me crazy-would it hurt them to put some chairs thruout the stores for people to rest on? The things you take for granted -like running back to the dairy section because you forgot the sour cream-forget about it!!
I see my onc on Tuesday and I am going to tell him I need at least 1 more month off. I have read this so many times-you think you have all this time to take care of the things that need done-but have I done that? NO!! How stupid I have been. I am trying to purge and take care of all my business. He wants to scan to see how much damage we have done by the extended time off but I told him even if it is bad I still want the extra month. This is the best I have felt in a long while and I really need to get my butt on gear. So my plan is do the month off, then scan and start back up knowing exactly where we are at. I am out of drugs so we will be trying to recycle a drug that has already failed. I don't really qualify for any trials-the brain tumors and the fact that I have already went thru almost all the drugs available for Her2 make me not a great candidate.
So my advice to all of you is take care of your business and do the things you love-every day. This group seems to be that type anyway. Trips, parties, family-everybody seems to have some great things going on. Good for all of you.
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Divine - all 3 of you are glowing! This makes me so happy for you. Your son sounds like he is wonderfully on his way. Congrats and continue to bask in the glow of it all.
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Lilylady - I figured you weren't posting because you didn't feel like it - not that you hands weren't working - ugh... You've been through the ringer. I really respect and applaud how you've taken "time outs" from treatments when you've needed it for your quality of life. I thought you were working WAY too hard but that doesn't mean it hurts to have to leave... I pray there could be some miracle and the tumors would be no worse or even fewer... As for procrastinating getting things in order, I really think it's human nature. You may even struggle to make yourself do it with this additional month. Can I help you? Can we help you?! I'm serious. Obviously some of us live closer and others are more far flung but I would love to be able to support you. You are not alone although it may feel that way. How are your family members coming through for you. I hope you're not trying to be superwoman. Sending a hug.
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lilylady, it is always, always good to hear from you. I think of you often. I check from time to time to see if you've posted anywhere on the forum.
I'm sorry to hear of your recent struggles with your health. I feel badly that you had to quit work, I know working meant a great deal to you, and you've always amazed me with your ability to keep at it while dealing with all the bc ups and downs.
What I want to say is please don't beat yourself up about business you haven't yet taken care of. Think about all that you've dealt with these past four and a half years. First, all the time spent taking care of your medical needs. Then time spent working, which brought you great satisfaction. You also had to take care of several family members passing, if I remember correctly. You still found time to meet up with friends and even bought a convertible, I think. And I know there's much more. You are not in any way stupid. You've been busy living, and I think that's what we should be doing.
You've been in my thoughts today after reading your post earlier. Good luck on the trip to the onc on Tuesday and please keep us updated. God bless.
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divine wonder picture. I had to negotiate going to my daughters in California. All depended on my counts, which were ok low. I had chemo and Herceptin in the morning. Went straight to the airport. Flew to LA to meet my daughter a couple days ahead of my group. All hopped up on steroids. It all caught up the next day which I spent asleep under an umbrella on the beach. By the time everyone else else arrivied I was back up to speed for a wonderful full weekend .
Lilly- you have been on all our minds. I'm so glad you feel well enough to check in. I'm in indy. If you need help I can scoot right over. Maybe you have a friend that could plant a few things for you so you could sit on your porch and enjoy them. I hope and enjoy your life. Dont let the business things consume you. It will always always be ther
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Lily....always on my mind and happy you have checked in with us. I hope you are able to take a little more time off the meds to feel a bit better for a while. It makes me so sad to hear that the meds are causing you so many side effects and discomfort. I really hate this disease and what it does to people. I keep praying for more medications to help the many women still dealing with progression. There is nothing wrong with "procrastinating" on some things...don't feel bad about that. I think it is hard to move forward with some things because there is so much to process emotionally that comes with all the BC deals out. You have been dealing with this for over 4 years now.....that is a long time to not get a break. Just do what you can and don't be hard on yourself. You deserve to feel some peace along the way or down time.My heart is heavy and it is times like this I really wish all of my BC gals were closer. I would love to come over and plant in your garden so you could enjoy summer flowers. I would love to bring you fresh vegetables from my organic garden. I do hope that you have some local friends/family that can support you and lend a hand.
I keep all of you in my prayers all the time. I hate that BC is the one common thread among all of these incredible ladies. Another friend of mine was dx with breast cancer last week...she had surgery today. Since I have been dx, I have had two friends get it and two of my friends mom's get it and it has only been 4 years. I pray every day for a cure....or a future way to prevent this horrific disease from affecting our kids, nieces, grandkids, etc..... I hate that because of me my nieces have a greater risk of BC. I hate that our FDA allows bad stuff in our food, environment and health care products that probably contribute to the spread of BC and other cancers. I just want no one to have to hear the words "I am sorry you have breast cancer" again. I am done venting now....
Life is busy here. Jayden is going to be 9 in July! Hard to believe he was only 4 when I started here. We are going back to Italy in 27 days to see our amazing exchange daughter. I can't wait. She will also come back and spend the rest of the summer with us. I am PTO President now....for the next school year. Don't know what I was thinking when I agreed to that! LOL! I am struggling with my business...my website is out there and I am finding it hard to have enough time to market/promote it between family, kids and PTO. My husband is traveling several times a month now with his job so it is mostly just Jayden and me. Jayden is going through evaluations for ADD/ADHD and possible Aspurgers right now. Not fun, but I am OK with whatever the outcome. Just love him to death and we will figure it all out. Life can dish a lot of things....so I am not complaining at all!
I hope everyone is finding some joy in their summer and that life is going well. My ladies in the lounge are always on my mind.....ordering a round of Frozen Margaritas for all!
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Lilylady, so sorry to hear how hard it has been for you. You inspire us all with how much you have managed this past 4 years. You should certainly not feel stupid - all this time you have supported yourself and others, while under awful physical and mental stress.
Your oncologist will always want to go with more medication, its what they can offer so it seems right to them, but you are the one who knows how you feel and whether you need more time off that horrible drug - go with what you want to do.
Its winter here and my garden is pretty bare so I can't send any flower pictures, but we are driving up to Cape York (top most point of Australia) in a couple of weeks and I believe there is some beautiful rain forest up there so I will try to get a good picture.
There is so little we can do but we do all think of you alot and pray for a breakthrough.
Divine - great picture with your son graduating, you must be so proud. These milestones become so special now.
Maria - PTO president, are you insane, do you not have enough to do! Like you I seem to constantly be hearing that friends and acquaintances have this horrible thing. I worry about our daughters if this trend continues. On a happy note , a friend of my daughter who had a huge lump on her chest wall has just finished chemo pre surgery and its competely gone. She has 3 and 6 year old kids so its such a relief.
Hubbie and I are off on our next adventure on the 26th June. We will put the tent, lots of water and supplies in the car and drive off for 4 weeks mostly camping. Target is Cape York the top end of Australia in Northern Queensland. Its about 6,000 Km from where we are, alot of dirt roads, river crossings, crocodiles and 30 different species of bats. I hate bats! but I love going out bush so its worth it.0 -
Lily- It's always good to hear from you. What has always impressed me about you is your willingness to speak up for what's right for you. You never let the doctors push you around. I admire that. I hope you can figure out what makes you comfortable, in terms of meds and chemo. I think of you often.
It's great to see your posts, everyone, even if they are infrequent. Divine, your photo is gorgeous. What a proud mama! Any grandchild news to share, Stilts?
It seems like cancer is everywhere, now that we are in the club. My aunt was just diagnosed with a high grade tumor in her brain, and it has really set me back. And at least two or three moms in my kids' schools have been diagnosed in the last year...the ones I know about. I refuse to say BC is a gift; but being in that club gives us a perspective that I think the newly diagnosed appreciate. It's not all 'you'll be fine' and 'it's probably nothing' but rather "Sometimes life really sucks. But then you realize that most of it is really incredible."
I was recently in an intensive leadership training where we listened to a speech by Bobby Kennedy, the eulogy for JFK; one of the lines that really resonated with me was "...an appetite for adventure over the life of ease..." That's you Penny! You are my inspiration, you adventurer! Have a great trip. I like bats, so maybe I'll have to make that trek sometime
I hope summer is treating you all well. I think of you often!
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I wanted to let you ladies know that our dear friend Lilylady passed.
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Tiger Blood - I'm blown away. Lilylady (now I know her name was Joan Cable) was so dear to all of us... Honestly, I don't have the words... Since you're in Ohio, I'm guessing you and she were in-person friends. I'm so sorry for your loss. This is a sad day. Thanks so much for taking the time to let us all know. We will so miss her updates on life as she knows it - she was a real character! I recall at one point she commented that she always wanted to make it to Cape May NJ. I don't think she made the trek. I'll be there in September and will raise a glass in her honor. Take care and let's all "seize the day".
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I am devasted by Lily's passing.
She was such a memorable person, and I always loved reading her posts that could at times be comical and other times be very honest in describing the difficulties she experienced. She did always speak up for herself. She had such a strong work ethic, and I always admired her for that. And she loved her flowers, and chosing her screen name Lilylady because she'd planted a garden of about a hundred lilies.
Her obituary says she made an impression on everyone she met, and that is so true. She really added so much to our March chemo thread.
It is so hard to say goodbye.
My deepest condolences to her parents, family and other loved ones. I shall truly, truly miss her and will always, always remember her.
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I tried to take a break from this site for a bit but in the last two days I have felt drawn back, thinking about Lilylady. I am so sad. No one fought harder and endured more to live life. She is a gift to all of us and will be so missed.
Sending healing energy and wishes for peace to her family and friends.a
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I am deeply saddened to hear of Lily's passing. We all started this ride together and I feel a connection to all of my lounge girls. Lily was a force to be reckoned with. I admired her sense of humor and ability to still "be real" through all she had to endure. She had an incredible spirit and inner strength. I am so sad that she lost this battle but am praying every day she is in heaven with her husband and brother and is healthy and able to be free from BC forever. My heart is sad for her family and other friends for the loss of this amazing girl. In honor of Lily I am playing Katy Perry's Fireworks on our juke box and holding up a big margarita and toasting to our dear Lilylady. May she forever be free, happy, healthy and surrounded by those that love her in heaven. Cheers!
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mdg, thanks for your words; it's nice to think of lilylady reunited with her loved ones. Your post brought tears to my eyes because the past couple days I've had that Katy Perry song, Firework (which I love) stuck in my head. Now I know why. Raising my marguerita glass high in Lily's honor, then raising it again for the bonds we've created here in the March chemo lounge.
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Raising my glass of Pinot grigio I am finishing as I read this. Here's to all of us and may Lilylady watch orver us and send a little of her courage and tenacity to us, no matter what obstacles we may face!
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So sad for her family - we are all thinking of you and will keep a little bit of our "Lilylady" in our hearts always. She contributed so much to her friends on this forum, we all admired her amazing attitude. She fought so hard for life. I keep remembering that her main concern earlier this year was to go on working so she could help out her family, always so unselfish.
We will miss you Lilylady - I hope we all can approach any troubles with the guts you demonstrated. I will plant a new frangipani in my garden for you in spring - you so loved the flowers when it was our summer and your winter.
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I decided to check in today to see how the summer is going for all my Chemo Lounge Sisters and I saw the most devastating news since I have been on this thread, on July 5th we lost our Lilylady (Mrs. Joan Stitzel Cable). I am so sad to hear of her passing. As I read her last post and she described in details what she was going through, all I could do was wipe away my tears and think what a "Lady" she was! She really went through a lot the last few months, but she remained positive. Now she is out of pain and no longer suffering from bc. We knew what an inspiration and awesome lady she was to us, but when I read her obituary and looked at her Facebook I saw she was an awesome and courageous lady to every life she touched. I also see her "Celebration of Life Ceremony" is today. I raise my glass of moscato in memory of her today. She will truly be missed.
To all of you sisters, we are almost at our 5 year mark and I wish nothing but the best for you and I pray continued healing for all of us.
Take care ladies!
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I'm joining all of my chemo lounge buddies in mourning the loss of lilylady. What a blow to read this. But I also join you in celebrating her spirit. What an amazing woman. I will miss her presence here and her no-nonsense advice and her sense of humor. I raise my glass to all of you women who have made such a difference in my life.
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Dear ladies,
I was searching for Lilylady and saw her most recent post was here.
I knew her from our August 2011 Surgery thread which I revisit every year. When I had first joined BCO, I learned so much from her wisdom and strength.
Over the years, I knew of some of her many challenges.
I am so saddened to learn of her passing.
Thank you for posting this news and for sharing your sense of loss and memories of this incredible dear lady.Joan811
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