Ibrance (Palbociclib)
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The key to remodeling houses while dealing with cancer is ... do not remodel your own house. Just a tip, ladies. I rent my home from a wonderful landlord/friend who handles every clogged drain and broken handle promptly. I go out and buy OTHER houses and fix them ... slowly when I get around to it. See my point?
>Z<
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I think having a separate thread for memorials is a wonderful idea. Friends or family can post there if and when they want.
I'm retired, thank goodness. My husband and I owned a pharmacy and sold it four years ago, so we both retired at the same time. I can't imagine how I would have made it through the past five months - wow, has it only been that long - if either one of us was working! Between falling asleep at the drop of a hat (my husband says I'm like the kids - when they were little, we couldn't make it to the end of the driveway in the car before they were sound asleep!) and all the various doctor and lab appointments, I can't believe anyone has time to work -- those that do, amaze me.
I've rediscovered an old hobby that gives me great pleasure, since being diagnosed. I crochet. While I have dozens of afghans in various stages of completion, lately I've been working on a presepe, an Italian nativity scene. I can crochet the figures while lounging on the couch, and if I fall asleep with a crochet hook in my hand, no one gets hurt, LOL. I love the creative outlet, and the thought of future generations putting them out every Christmas warms my heart.
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Hi Faith, intoLight, Claudia, Hope, Thanks to all of you for your helpful replies. To know that this combo needs more time before I can expect to see more definitive results gives me encouragement. It also helps me control my incorrigible optimism. Optimism is a great attribute to have but it does tend to put pressure on me when I'm expecting scan and blood tests to show that the tumours in all of my bones are completely gone in a matter of months! Thanks to you, Faith, intoLight and Claudia for hosing down my expectations and showing me that the tumours will regress or at least remain stable given time. Hope, I had my top to toe CT and bone scans at four months, not three, but only because my oncologist was on leave and it showed the disease to be stable. I wasn't too worried about the results because I've been feeling a lot better and have managed to regain one of the kilos I lost, which I don't think would happen if the cancer was progressing so that's my message to you, Hope. Go by how you are clinically and if you're feeling ok you probably are...that's my take on it, rightly or wrongly, but it helps me!
Faith, enjoy your time in Italy. How wonderful that you can do that!!I'm so sorry to know of the passing of one of our members.
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Good morning...
Thanks Leapfrog! I have been feeling pretty good, so hopefully that is a good sign.
I'm retired, but don't think I could go back to work if I wanted to. I really do believe it's "one day at a time" for most of us. Some days are good, others not so much. I am a very anxious person on top of everything else. I agree with Pat -- it sure helps to have a hobby to take your mind off of this disease. I do a little bit of knitting, basket weaving...but, my passion is books. I couldn't focus on reading for several weeks, but I'm over that hump now and have been back at it. Oh...and, I do love to "crush candy" in between chapters.
I've been wanting to ask if any of you are in pain? I have pain in my back/sides most of the time. It's tolerable with Tylenol. I didn't have radiation prior to the Ibrance/Letrozole combination which, I think, some of you might have had.
Hope
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The Pats
. I actually started a new job after my diagnosis of mets. I really liked it, but I guess they didn't like me, since they didn't keep me on. It was only part time, I don't have the energy to work full time due to fatigue from treatment and old age. I just like to feel I'm contributing. I've been telling myself to learn Spanish, so maybe I should do that. Nice armchair work. See MO today armed with improving CT scan and another drop in TMs. My white count is in the go zone, but I hope I can persuade them to drop me into 100 mg.
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ciaci--you made me lol "if I fall asleep with a crochet hook no one gets hurt". Priceless. I too have started crochet again mostly baby blankets as many of my friends kids are now popping out a new generation and my coworkers are young and having kids. I've always worked PT because my kids came first. I find myself needing to get out. Too old for mom stuff at school volunteering. Too young to retire. Bored because all my friends still work. Too young for grandkids (although I know there could be surprises). Needing to find a place where I don't have MBC.
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Hi all - regarding a separate thread for the passing of members - there are already several threads for that. I think the one that is the most up to date is called "In Memoriam List from the BCO Community". I'm not sure what the rules are for being put on this list. I think members have to give permission to the BCO site to allow their names to be added to this list. Some people don't want their passing to appear on a list on the internet due to privacy concerns - like identify theft.
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I think a celebration of life thread would be nice for those who give permission to the mods ahead of time.
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Ciaci and Hilldegunn, I also crochet now. I used to knit but wanted a new challenge when I stopped working so I taught myself to crochet. It is fun to crochet little dolls for my grandkids (3 age 3 and under). I also read and crush candy, but my vice is the occasional BBC show on Netflix when I don't have any energy left. It is difficult to volunteer and not have a dependable schedule or dependable body! Now that my kitchen remodel is finished I might be looking for a new project. But this time one that doesn't take money!
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Hi Nonahope just quickly because it's nearly midnight where I live....pain is a huge issue for me and I'm on opioids...a lot more than I'd like to take, but I have stress fractures in eight ribs and three to four places in my spine, along with so many tumours in every bone from my femur to my skull that I was unable to count them on the scan report I received. I'm in a good place now, though and am able to pursue hobbies for the first time in my life. My hobby used to be work...I was a workaholic and exercise freak before my illness and then, for a long time, probably two to three years (I've lost count, the last few years are a blur of illness and pain...not seeking sympathy, it's just a fact) I was too ill to do anything but lie in bed looking out of the window. Now I can do a bit of knitting, needlepoint, both of which I'm hopeless at, and read again. Like you, I couldn't concentrate on reading for a long time but I've always been a big reader. I must admit I've resorted to Facebook too as a source of communication with friends as I'm unable to go out. It does have its uses if it's used wisely, I think. I didn't have radiation. I had no treatment prior to being put on Femara and Ibrance because I had a bilateral mastectomy.
Hugs
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I really like Dianarose idea! When I die, I don't want people to mourn me, I want them to celebrate my life! Remember the good times, laugh about the silly things I have done, tell their best memories of me and smile!
I like Z's idea. Freedom to work when you are able. There are just too many days you can't count on me to have a real job. And after 5 years of fighting this beast, I still find there is no pattern to good days and bad. I have lost a couple of friends due to always having to cancel plans. I guess they got tired of it.
Leapfrog - So glad I was able to help.
Hugs and prayers everyone
Claudia
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Leapfrog...Thanks for your input. I'm so sorry you are in so much pain. I was given Tramadol for my pain, but it just makes me sleepy and really didn't do any better than Tylenol to ease the pain.
I just had a lumpectomy 7 years ago. I often sit and wonder "if" I had gone through with a mastectomy (which wasn't necessary per my BS) would I be going through this MBC now. Also, I only took the Arimidex for 5 years as that was the protocol at the time. Not that it makes any difference now, but I do sit and wonder sometimes.
Hope
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WOW...exciting things are happening. Look at this article just out today about CAR-T therapy. This seems like a huge step toward futuristic treatment for many cancers, hopefully to include MBC!
https://www.statnews.com/2017/08/30/novartis-car-t-cancer-approved/
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CAR-T was approved for treatment of rare leukemias. The take home for us is that it has been developed into a safe treatment and there will be more and more practitioners who know how to administer it. MBC treatments are in trials and should be on everyone's short list.
On the Immunotherapy thread I reposted an explanation of CAR-T therapy that I found very clear. It includes a list of MBC trials for CAR-T therapy. Those of you between treatments or lining up your options should consider going through the CAR-T trials and possibly work on the testing required to qualify. Most of them require your cancer to express a specific protein on the surface. CAR-T therapy trains your T-cells to identify and attack cancer cells based on expression of this specific protein. It takes testing and work to find a trial that targets a protein expressed by your cancer. There are opportunities if you are proactive.
If you are interested in immunotherapy, do not wait until you you "have no other options". Try to get into a trial as soon as you can find a good one that will accept you. IMO, immunotherapy and oncolytics are the two avenues of research that have the potential to result in remission. Everything else is just punting the ball down the field and waiting for it to come back.
Thanks Joyner.
Keep fighting ladies. You have options. I'd prefer to solve the memorial problem by not losing any more of us. Knock on wood, but after some tough hits this spring I feel like the losses have been relatively light on this forum.
>Z<
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As far as pain, I never had any. Sometimes I find it hard to believe that I have cancer at all... I had localized pain after my surgeries, of course, but even then it was very minor - a Tylenol or two took care of it each time. When I started the Femara and Ibrance, I had one bone met in my spine - on the T-11 vertebrae. Never any pain from it at all. Next month's PET scan will show if it's diminished, progressed, or stayed the same. If I didn't see it with my own eyes, I wouldn't know it's even there.
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That's great stuff, Z...thanks, as always. I want you to get back to your fighting form, too. We all need you, as does your family. Thanks for your consistent strong, knowledgeable advocacy for us all.
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Z, it's been a busy day so I am slow to respond but I wanted to thank you for your candid response to the issue of working. While I wish things were easier for all of us, you very eloquently highlight the issues we all face trying to keep it all together on those days when pulling the cover over our heads seems like the best option.
I admire your ability to pause, regroup and find a way around the typical nine to five scenario. Unfortunately, while I am blessed in many ways with good benefits, it does create a few conundrums. Changing jobs is not really an option as I would give up the very health care and other benefits I need at this time (including short/long term disability benefits and coverage for the Ibrance that I could not afford on my own).
So, I keep chugging along, figuring it out as I go. Why should work be an exception in this unpredictable world we live in?
Wishing you all a peaceful evening.
Pat2
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I struggle so much with the question of whether to work. For now, I'm working full time. Mostly because I need to financially (I'm only 43 and newly divorced so health insurance is a big factor). But I also want to travel! And for that, I need my paycheck coming in. I hope in a few years though to be down to half time. Today, I work two days from home; 3 in the office.some times I'm so tired that I can't function but I'm figuring out other ways to lighten the load - sending laundry out, house cleaner, groceries delivered. I am starting to save more for later and getting purchases like a new mattress and car in place.
Living in Los Angeles on $2500 a month will never be possible for me. So moving may be necessary too but I hesitate to move my son away from his dad.
I'm deep in this thought process :-(
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Nonahope I understand how you must wonder about your MBC and whether BMX would have been a safer choice but your BS made the call that he/she thought was wiser at the time. I'm sure you've been through this in your mind. I had calcifications in 2002 and the BS I saw then made the call that they would remain benign and put me on normal two yearly mammograms without making a note on my file about the calcifications. All of my mammogram reports after that were said to be clear. Obviously calcifications don't disappear so at some stage they became malignant but, because the BS hadn't noted me down as a high risk for cancer, I slipped through the net. I often think I should have asked for BMX in 2002. If I had I wouldn't have Grade IV cancer now but I was young (er) and in unknown territory so I followed her advice. I could beat myself up over it but it would be futile. I didn't know then what I know now and it's the same for you my love. So many of us could tell a story like this....... it shouldn't happen.....I'm beginning to believe that so many of us would not have found ourselves in this plight if we had been given different advice.
Hugs to all
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I know it's hard not to look back and wonder what could have been done differently but cancer is so unpredictable. In my case, I had early stage disease, albeit with lymphatic and vascular invasion. I threw everything at it, surgery, aggressive chemo, radiation, five years of Tamoxifen and then three years of AI. But almost 16 years from original diagnosis here I am. In my case, no regrets.
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Leapfrog...All my mammograms were fine after I had my lumpectomy. We can't go back, for sure. So, we will move forward on this new journey.
Sadie....You give us the encouragement we all need.
Wishing all a very good day and a super holiday weekend!
Hope
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Gee, Sadie and Hope, I hope I didn't give the impression I'm complaining! My post was more of an observation of the nature of the disease. I'm only ten months post diagnosis but I feel I've made good progress in my acceptance of what happened and where I am now. Cancer has changed my life and, in some ways, strangely enough, it has brought unexpected gifts. So much love has come my way that I feel overwhelmed by it.
I'm in a happy place.
Hugs and prayers
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Leapfrog...Oh no! I didn't read your post as "complaining". I think most of us look back at some point on this journey and wonder "what if".
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I appreciate the recent comments above. I am still in shock with my recent diagnosis only a week ago and I have thought naturally since then that maybe it would have been better if we had caught it before the doublings of the past 4 months. But like many of you, this now and I want to roll with it. I have always appreciated BCO and am glad to be with you on this thread. Earlier this AM (before I went for radiation planning) I was on another group site altogether separate from BCO and I realized that I need to delete it at least for now. It was a long list of complaints of misdiagnoses or found too late and why weren't more scans offered routinely and it upset me. What I want and need is a place to share as I move forward since I know almost nothing about Ibrance and Faslodex and what I can realistically expect or learn but not to the expense of looking for negatives around every corner.
Thanks for my first (and not last) chance to appreciate you and your collective wisdom. I have yet to meet my new MO but did have a good session with my new RO yesterday. My file will soon all be in Victoria at BCCA here.
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marianelizabeth - we don't look back here. welcome.
>Z<
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Leapfrog - Your pictures continue to take my breath away!
Marianelizabeth - We don't look back. I feel like I made the best decisions, with the information I had at the time. Now we move forward and keep hopefully, making the right decisions again. I am sorry you have to join us, but know what a great source of support and information is available here!
Hugs and prayers everyone
Claudia
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Another future possibility for choking off that estrogen!
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Marianelizabeth, I just wanted to add my welcome. We move forward with support from each other.
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Marianelizabeth....A big welcome. This site has answered so many questions that I had when I hopped on board. You are in the right place, for sure!!
Hope
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