Ibrance (Palbociclib)
Comments
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Candy, good for you. You are doing what’s best for you at this moment. I was just thinking as much as I love my doc, they do see so many patients. We have to advocate for ourselves because they don’t know us like we know ourselves and what we need. If she is a good physician and cares about your health, she will respect your decision and be there for you when she is needed. Virtual hug.
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Candy,
I second what everyone else said. For you, now, this seems to be the best decision. It's not written in stone. If and when you feel the need, you can always come back to the other doc or whoever may be in your area at that time.
But, it is a big decision and you should feel a weight removed by making it.
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Thank you guys for being there as my sounding board and as my virtual friends.
I wonder though about the comments " doing what is best for me at the moment". I am stable scan wise. I am on my first line of therapy. I was going along swimmingly until my MO started freaking out about my lab numbers back in May, wanting me to get filgrastim shots, hold Ibrance, telling me I am getting Ibrance toxic, and shooting down all my suggestions (move to another CDK, tweek Ibrance schedule). Then the deal breaker of telling me that I need to quit reading and researching and just let her lead. Until all that- before May- I was doing ok with my MO. Not perfect, but ok.
I am hoping this new MO will be with me for a loooonnnggg time. First, I will stay stable for a long time. Then, when progression comes, I will go to another pill form for second line and can still stay with this MO and do as I am doing now. I would think that until I get really sick, or move to IV chemo, I can continue with this MO and all that this cancer center can offer. I hope. One doesn't really know I guess.
Please be honest with me. Am I making a mistake?
Edited to add-- This new facility recently ranked #11 for adult cancer centers in the U.S. Impressive. Not that my old MO was stupid, but this new center has so much more to offer. And the accolades are impressive.
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Jackie, some great scan news! Well done!
Candy, I'm glad you chose the shorter drive. Our time is precious and that's a lot of road time. As was said, you made the best choice for now and things could change and new options could come up. Yes, I was turned down for SSDI. It is not automatic; they have the option to deny you if they think you can still give your last breath propping up our irrational economic system. (Sorry, I meant, if they think you can still do your old job.) Because my office has a work from home option, they figured I could keep doing work that I can no longer focus on, not even for five whole minutes. Guess I need to document my mental decline, since I'm not yet physically disabled. Even though it will cut my benefits, I plan to consult an attorney for help with it. I read that an appeal can take longer than a new claim, so I'm thinking I will simply apply a second time.
As for the piqray, I have been tested for that mutation and don't have it. Someone asked about xeloda and I am considering it. My onc thinks the Taxol would be easier in terms of side effects and they are better able to monitor patients who are coming in once a week vs once a month, or by televisit.
Ginny, I'm sorry about your husband's illness. I read that 70-80% of SSDI claims are denied the first time. Our system really doesn't want to pay out. Vote for political candidates who'll support healthcare for all!
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Thank you NineTwelve!
Candy...no, in my opinion you are not making a mistake. If you felt completely comfortable with your current MO this wouldn't be an issue. Bottom line is you're not completely comfortable. With our DX you need to feel comfortable. You need to have faith that your doctor is looking out for your best interest. I don't think that is the case, so moving on now if what is best for you. You are also leaving the door open to return if need be down the road. But the hope is that that will never be the case. When I said that you are doing what is best for you for right now, I said that because our decisions are all based on the right now. I know this is a very difficult decision for you. It would be for any of us. If you feel the need to sit on it a few more days, then do it. No decision has to be made today. But once you have firmly made that decision, don't look back or second guess yourself.
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Candy, I really meant “best for you” because of no longer being on the same page (another vague expression) as your current MO. Confidence in our MOs is important for us since we’re with them a lot more than any of our other doctors. You may have mentioned this already, but it’s also possible you’ll see your new MO every other month since you’re stable. So maybe fewer 2 hour trips?
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Candy - I'm glad you were able to make a decision that is right for you, that is all we can ever do. The science on cancer is not clear, and is constantly changing. Recommended treatments vary so much, not always just the patient's history, but the DR as well. It is easy to get overwhelamed by all the information that is out there, some of it good, some of it not, but that doesn't mean that you shouldn't look. Hope everything works out well for you.
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I ran into a similar situation this year. For various reasons the current MO is my 4th. His office was a 20 minute drive, and I liked him. So when I was told his office was moving, 45 minutes drive, I decided I’d stay with him. In a normal winter this will increase to an hour one way drive. With Covid, who knows. My point is, if you like him/her, keep them. I was in his office last week, whining about my PCPs PA. He talked me down. It’s so important to have a team, and it’s resources, that YOU like and can deal with.
Just my 2 cents.
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Candy, I logged in to say I agree 1000% with your decision to switch MO, and also it’s a great plan you came up with to have your pcp help you get some routine things done closer to home. Now please do take a break and do not worry.
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Thank you guys again. I have made the decision. But I always feel iffy when making decisions-- when I quit work and applied for SSD I questioned it too. But, funny, I was "officially" retired in Dec and COVID happened in March. Now I am glad I made the decision, because I am now not in the workforce during Covid.
And as Rosie said, I lost confidence in my MO. The "stop reading and trust me" thing really shook me. I read and learn from you all-- postings about trials, what other MO's are doing with you all (around the globe), Bestbird's guide. I am supposed to forget about it all. No more LBBC Conferences or webinars. No more learning. Just allow my MO to make the decisions. I cannot do that. And she was not happy with me suggesting other options for the low count issue. We kept it friendly, but tension was high in that MO visit.
Rosie- My last CT was May 20, due Aug 20 if 3 month scanning. Message from new MO nurse said next CT around end of Sept (not scheduled yet) so maybe every 4 month scans now? So, maybe, if stable then every 4 month scan/visit. That would be 3 trips a year. Barring any problems coming up. Doesn't seem too bad. Just more worried about problems coming up in my health and having to see doc more often (monthly or more). Frequent visits across town is different from frequent visits with the travel.
When I was telling my family about the change, I said "Well it is not for a hangnail. I have Stage 4 cancer" . Nothing else was said after that.
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Thanks guys. As Shetland said, time to take a break.
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Hugs back Candy!
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Rabbit and Jackie congratulations big time 💃💃 I am so happy for you guys.
Candy, you made decisions that are best for you, bravo! They said “Knowledge is power”, you looked up the recent research, conferences etc and collected good information, so you spoke up and did not accept what you believe was not right for you and that is wonderful you did not give up and continued to search to find a better cancer center. Thanks for sharing your experience, so i might inspire others, including myself!
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Candy,
I don't think your making a mistake. You need a MO you can work with. Sounds like you have it all figured out.
Ninetwelve,
I also used to work from home. I think you were unlucky and got someone who was either new or didn't have empathy with cancer paitents. I was approved for to SSDI last year. I think what helped me was I used sometimes work really long days and sometimes 60 hour work weeks. I stated in my claim that I could no longer work that work schedul e due to the side effects of cancer treatments.
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Candy, Of course you are right! Get things set up while you are stable so you can focus on asking questions and making decisions about the next step, whenever that comes,when things will feel rushed, and you will want to have input and be confident of the plan going forward. We can only go one step at a time, there's no point even trying to plan for out further than that...
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Denny10 - so sorry about your progression but appreciate your post to NineTwelve about xeloda.
Jackie - awesome news on your scans!
Rabbit - I think I posted congrats to Stable Mabel, but if I didn't, here's a shout out to you! Great news!
NineTwelve, I am in Seattle but wish I lived closer to you and could drop off flowers, groceries or go for a socially distant walk (I used to live in Portland, Oregon). Please appeal the SSDI decision. I am outraged that you were denied, as if we don't have enough to deal with?
Candy, I 1000% support you! I think it's smart to leave the door open with the local onc. as well. Well done. Wish I lived closer to you, too and could drop off some flowers or a treat! A virtual pat on the back will have to do:)
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Hugs to all. What would I do without you all. Love ya.
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Candy, I've been reading here everyday so am familiar with your anguish over changing MOs. I just want to wish you the best of luck going forward, may everything turn out just right for you. Hugs.
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Candy,
If my MO had told me "Stop reading and trust me," that moment would have been the end of our relationship.
Now you can relax and move on.
Tina
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Congrats, Jackie !
Candy, don’t look back! If nothing else the angst is gone and you can start fresh with your new plan.
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Thank you everyone! 🥰
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How do cancers develop resistance to drugs?- in most cases the cause is not really known. A new paper came out tracing lung cancer resistance to drugs by tracking changes in gene expression at the single cell level, which was needed because cancers are heterogeneous (a mixture of cell types). Interestingly, this study identified a never-before described cell state, appearing only in cancer resistant cell populations, that seems to lie at the heart of the transition. Unlike cancer stem cells, this unusual very plastic cell type did not exist in primary tumors; and furthermore they found that it is linked to chemoresistant cancer states in many different cancer types. Perhaps studies of this cell can identify a universal molecule or enzyme to target in order to prevent drug or chemoresistance. And then we wouldn't have to try to read the tea leaves in Foundation One reports...
https://www.sciencedaily.com/releases/2020/07/2007...
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curious, this is interesting! My cancer has been good at developing resistance to everything so far, getting ready for the next one. Hopefully they’ll figure this out before I run out of time.
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The gift that keeps on giving. Apparently ongoing treatment gives you ‘sticky blood’. I thought I’d been overdoing the walking as calf and ankle swollen... turns out it’s a DVT in my knee, not caused by the walking but by the treatment. I’m now starting on the blood thinner Rivaroxaban and my MO basically said it’ll be for life. She also said clinical trials had just given enough data re combining this drug with I/L for them to be confident it’s safe and effective. The alternative is daily injections with a more traditional blood thinner ( not warfarin).
Anybody any experience of this?0 -
Karen,
So sorry to hear this -- when you say it's a result of treatment, did your doc tell you that it's because of the I/L treatment? Did she segregate which of the two drugs does it, or is it the combo?
I've had no experience with blood thinners but my BIL has been on them for a while and he's doing well with them. I think it's just the annoyance of having to have additional testing to monitor the effects of the drug on your system, etc. Of course, we all know that there are LOTS of annoyances with being metastatic, and so this is just one more. But wow. Did your doc report this to Pfizer as an adverse event? I don't think I've seen this before with anyone.
Best of luck with this additional challenge. You are always so positive that I'm sure you'll handle it in style.
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Karen and others- I have read that just having cancer, in and of itself, causes us to be more prone to blood clots. I have not heard that I/L meds can cause clots.
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Curiouse - thank you for the post on resistance to drugs. I wonder if that means throwing new treatment at it all the time rather than "life time" drugs, until that drug is no longer effecitve. In one book advocating for more emphasis on early detection and prevention, the author's opinion was that cancer is a failure on the cellular level, some very basic function of the cell goes haywire.
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BlueGirl, I've also read that life evolved by never having all cells in just one "state", so that no matter the stress type or duration, some cells would always survive. So long as we can get enough of them down, our immune system should be able to handle the rest!
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New paper in cell shows what is going on in PI3KA mutant breast cancers- check out this video!
https://www.cell.com/cms/10.1016/j.cell.2020.05.05...
and here is the paper
https://www.cell.com/cell/fulltext/S0092-8674(20)30686-3v
they further explain the importance of diet in these cancers, avoiding omega6-fatty acids in meat and dairy products could dramatically improve the sensitivity of cPLA2 inhibitors, and also highlight how this is needed to make cancer sensitive to killing by the immune system - for these tumors, nutrition will play a major role in disease management and treatment.
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