Ibrance (Palbociclib)
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Thanks for the pocket duty!
Bev - yea, I got a message from the nurse on Friday and she said that my MO was talking with RO. So there you go. And they know me well enough that they just schedule without asking. I feel my health takes precedence over my job... however, not my vacations! ;-)
Lee64 - reporting for pocket duty
Jack5ie - reporting for pocket duty for your scan results.
Rhosgobel - I'll be in your pocket for 3/26 & 3/31!
Candy - do you have a master list of scans coming up? Anyway you can share? I'd love to be in everyone's pocket those days!
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Holly- I just jot down posters scan dates when they mention it and I know I miss some.
The ones I have down are--- Lee scan today, JACK5IE MO appt today, Mel (another Thread) waiting on scan results from last week, Rabbit bone scan 3/26 and CT 3/31, Sadie (liver met thread) scan 3/29, Sondra ovary removal 3/26. For April--- Grannax (liver met thread) scan in April, Kittykat (liver met thread) scan in April, Aprilgirl scan 4/5.
I keep a list next to my computer. Just like to keep up with all of you and your situations.
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hello friends, just wanted to bring to your attention this article from Springer which summarizes all the up to date status of the CDK4/6 inhibitors, their studies etc. "Here we outline the key efficacy and safety results reported thus far from the PALOMA, MONALEESA, and MONARCH series of clinical trials of palbociclib, ribociclib, and abemaciclib, respectively"
https://ime.medicinematters.com/oncology/advanced-...
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Hi everyone. I got my results today. The bone scan found areas on T2, my rib and forearm/elbow that are suspicious. The non-contrast CT scan found areas on T1, my rib and a small area on my liver that are suspicious. So I will now be going for a PET to see better what is going on and the doctor is also re-testing my original biopsy to see what would be best for next line of treatment if necessary. Based on these results, I'm sure the PET will confirm. I'm hoping it doesn't find anything else wrong.
I'm kind of numb right now but yet feeling everything. Thank you for all of your thoughts, prayers and pocket duty. It is very much appreciated. I will keep you all posted.
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Jack5ie - Oh dear!!! I understand that numbness. Still thinking of you as you process everything. Hopefully when you get your PET, it won't light up like a Christmas Tree. Hopefully those other spots are just cysts or arthritis.
Candy - Thanks for your list. I have written it down to keep close.
Moth - I will have to look at the study after work.
I got my thoracentesis moved from Friday to Wednesday!
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JACK5IE- So sorry to hear that there may be new areas seen. Hopefully the PET will determine what if any are mets versus arthritis or something else. Are all these areas--- T!, T2, rib, forearm/elbow all new for you-- you have bone mets already right? The liver is another story. Please keep us informed. Gentle hug from here. Let us know the PET date when you have it.
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Jackie, I’m sorry to hear about the possible new activity. I hope you get more info soon so you can know what’s really happening. I’m in your pocket for the PET scan.
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Jackie: I'm sorry to hear the news. Last week I found out from my MO the facility is starting to use the Cerianna injection for FES PET scans. The drug helps detection of ER positive lesions and enhance therapeutic decision making. Perhaps your facility is utilizing this already. Will be thinking of you in the next few days. Hugs and prayers...
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I'm in your pocket for your upcoming PET Jackie. Hoping this new scan gives a clearer picture of what's going on. Thoughts are with you as you wrestle with decisions and further testing. *hugs* Cancer sucks. I hate this disease with a fury.
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Jack5ie sendinging hugs and support. I’ll be with you for upcoming PET.
Thanks Candy for keeping up with everyone. You’re truly special.
Tany
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Jack5ie, I'm hoping the things that showed up on your CT are the sort that would show up on a look at the average person's body. I've seen time and time again that things turned out to be nothing upon further examination. It sure has happened for me.
Way back in the day (1996 or so) a radiologist wrote this on my chart about a spot, "Cannot rule out metastatic breast cancer". It was my first time to get a scan after a few years with BC and I was scared to death! He eventually called it a "bone island" but kept adding that "Cannot rule out...." tag line for years. Then all of a sudden he stopped writing it and that was that! I don't even remember where it was!
So Dr. Pat thinks you have some bone islands and I look forward to them becoming unmentionable!
To all of you: I had a PET/CT today. I stalled it as long as they would let me and will see the onc next week. (She won't be at my location again until then so I opted to wait.) If it comes up on my online chart I'll know sooner. I just wanted you to know that I spent my "waiting hour" praying for all of you. I hope for good results on your scans but most of all, I pray for peace and a joyous springtime!
Love from PatGMc
"Home On the Strange"
10' x10"
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Jack5ie, Scans are too much to bear and never get any easier, but a switch can be OK sometimes. In week two, I'm having a way better time on Faslodex than I was on Femara, in terms of arthritis/joint pain. And this morning I finally got the cataract fixed on one eye, wow!! I haven't seen anything clearly for almost a year!!!! It's a brand new world, and I am seeing details and colors I haven't seen in years and years, by far this is the best thing I've ever had. And then the treat of seeing one of Pat's new prints- wow, that moon is so perfect!!!
On the down side, I also saw myself clearly in the mirror for the first time in a year, and that was shocking too. These treatments have aged me way too much.I'm going to have to go find someone to do a laser treatment or something for skin sun damage and deep wrinkles. And fix my hair somehow. I've lost weight and muscle mass, majorly. Can we get a next treatment that does not involve bone pain, weakened bones, muscle loss, thinning hair, damaged skin and major fatigue? Perhaps that androgen therapy or some kind of immunotherapy? If cancer is really to become a chronic condition and we are to live some significant bit of more time, there needs to be some way to heal and recover from these treatments, in addition to the cancer and all the stress of the scans etc..
Hoping for (ultimately) great news from your scans, and for Pat, too!!!
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Jackie - I hope that the “somethings” that were on the scans are nothing to worry about. Will be in your pocket for the PET scan.
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Cure-ious, I'm so happy you're halfway through the cataract surgeries! Congratulations on taking that big leap! Let the needlework begin!
Your description of how this disease and the treatment ravages our bodies is so on target. I stood and looked at my body before I got in the tub last night and was flabbergasted at how everything had dropped. Sitting on the sofa for four or five years has left me with no muscle mass (as one would expect). I have hopes of getting out to walk as the weather gets warmer.
I struggle with deciding to take the Zofran so I won't throw up while knowing I face a few days of unpleasant constipation. Like you, I look forward to treatments that take less of a toll on our bodies. I know those are coming and we can celebrate big time!Love from PatGMc
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Good morning ladies - I couldn't sleep, so here I am at 4:30a writing to you all!
Cure-ious: Hooray for seeing and that's great you're halfway done with your cataract surgery! You're spot on with the way cancer takes a toll physically on our bodies. I wish my hair was thick and luxurious like it used to be. When is your COVID shot? I believe you said it was sometime around your eye surgeries.
Pat - Your newest work of art is wonderful. I love your descriptive titles. In your pocket for the next week as you wait for the results.
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Hi Holly & Pat!!! Holly, good memory, I will be heading for my second Covid shot in an hour. Faslodex shots round two are next week and then next cataract surgery the following week. I've been off of Ibrance for almost a month now, not wanting my neutrophils to be suppressed for either the vaccine or the surgeries, so will start that up next week as well- my last bloodwork the ANCs had gotten to 1.5, and I'd like them even a bit higher because they crash with treatment.
My sister, who is a PT in Kansas, was visiting last week- and commented on my big time loss of muscle and gave me an exercise to do where you sit slowly on the bench then raise up just using my core and butt muscles- am to do many reps a couple times a day- I need some level of butt muscle for them to inject the Faslodex into!!!
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PatgMc- Thinking and waiting with you for your PET results. May they be stable again. I wish we could have known beforehand for pocket duty. But you know we were hiding in your pocket during the scan giving you good vibes.
Cure-ious--- Woohoo on cataract surgery #1. And hopes the Covid #2 shot is good to you. It was a rough 36 hours for my 2nd Covid shot. I guess I probably have lost muscle mass too--- I used to lift things at work and did my own yardwork in the summers. Mainly sitting around now.
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a little update here, I experienced a sudden pain in my lower back around si joint since the beginning of February, at first It scared me if it related another fracture, again? No thanks! But this time I didn’t hear a crack, the pain was intolerable but fortunately last for 10 days, unable to move, impossible to sit, unable to walk etc trip to bathroom was the hardest with a lot of tear and a cane. NP suggested to reschedule my follow-up mri but honestly I didn’t have hearth for another bad news, MO suggested a bone scan... the pain slowly got better over a month- despite I had a half episode of sudden pain again in the meantime-I could start walking- I mean slow-baby-like-walking, like I am made of glass! All good here now.
Jaycee good luck with one shot vax, I hope you don’t get bad se.
Candy my best wishes for your scans on 22, and safe long trip to the clinic. I have spine mri March 30, please add to your list.
Pocket duty for everyone for upcoming scans, for good results always.
Pat I am a big fan of your art work.
Hello everyone (((Hugsss)))
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Snow-drop,
I recently had a similar experience with my back that I detailed on the bone mets thread. I feel ya! I am about 2 1/2 weeks out now, and have been nursing it along. Having a PT consult this PM, and my primary has now prescribed long lasting NSAID (rather than OTC ones) and a muscle relaxant. Maybe you could call your primary, if you still have any pain, and see if he/she would get on board with something like this.
Glad you are feeling better, but back pain is the worst, isn't it? Your spine MRI at the end of March may provide some additional info -- when I had one last summer, it showed a lot of degenerative disease in my back (versus cancer) so that was enlightening.
Good luck.
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Candy...I only had cancer in my sacrum prior to this. So yes, all these areas are new to me.
I just want to thank each and every one of you for your kind words. I know you all know exactly what I'm feeling which helps. Plus your words have been a great comfort to me. Thank you all.
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Snowdrop, thanks for asking. The vaccine was OK. Way better than I expected when we drove up and saw the LINE. My "appointment" was at 5:25 PM. I asked DH before we left what it means when your appointment time is at 5:25. He has no idea. Then I gave him a hint. How long do they expect your appointment to last if it is at 5:25? He still has no idea because he is not a professional patient. (5 minutes, we all know that) So we show up at about 5:10. I was not thinking clearly, obviously. I should have realized that there would be a line out the door. They started at 5 but others realized what would happen so showed up way early. I see the line and freak out. My unacknowledged mobility issues make it so I can't stand in a line for even one minute. I try to call but they are not answering (answering service answered, no help although she tried). DH and I sit there pondering. I give up and want to leave but he is more game than I am and wants to try and get to the door and ask. He does and they say he can stand in the line and when he gets to the front, a nurse will come to the car and give me the shot. Odd but he is willing. So we do that. He is in the line for about 20 minutes. The nurse comes to the car and gives me the shot. No needle prick pain but I feel the med going in. Weird. I haven't had a shot in the arm in YEARS. I get shots in my butt and in my stomach and I get my port accessed. So different. SE: no arm pain, nothing else. Kind of worried. Does that mean it isn't working? We all know that is a myth but I actually saw that idea espoused on the web somewhere about the vaccines.
Moral: just like nothing good happens after midnight, you can't do anything in five minutes, especially in a doctor's office.
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Snow-drop--- you are on my list.
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Candy, I so appreciate you keeping track of us and helping us keep track of each others scan dates.
Jack5ie - we are here for you! Sending you lots of love and strength to get though the petscan and get some answers.
Holly - I am glad your appt was moved up, let us know how you are feeling afterwards.
Cureious - you are spot on. I haven't lost weight but feel as if I have aged quite a bit in the past two years (including the months I was had symptoms that led to my dx). BUT - I am happy to be here!
PatMcG - beautiful artwork and I appreiate your wisdom! In your pocket for scan results!
All with scans and procedures: In your pocket, sending you love and strength and know that we are with you and support you, there is no one that gets what we are enduring like those who are in it with us or have gone before us.
Had my monthly faslodex injection, blood work and onc meeting yesterday. Anc .89 so my oncologist allowed me to start cycle 17 of Ibrance yesterday. She said if it's below 1.0 next cycle we will move to a 3 week on 2 week off Ibrance schedule. I am curious if I should go back up to 100mg Ibrance if we move to the 3 weeks on/2 weeks off? Pls. share any opinions you have on this. She will not allow me to do the schedule Candy is on which is 5 days on 2 days off.
I was able to get the covid vaccine last week, due to volunteer work (I will be 57 on April 1st so age and stage IV don't qualify me for the vaccine yet). I got the pfizer - it was my week off of Ibrance and I checked with my onc. office first. Injection site sore the next day but that was all. I have the second shot scheduled for the end of March.
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Aprilgirl- Interesting she will not allow the on 5 days/ off 2 days protocol. That protocol was published at the SABCS--- San Antonio Conference-- in Dec so the study is complete. You scan next month, right? See how the scans look and ask about going back up to 100mg since you will have 2 weeks off. I really do not know what the "right" plan is-- 2 weeks off or the 5/2 protocol. Does our MO's really know either. My numbers are still low with the 5/2 protocol, so am I really doing the right thing?
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Hello, friends. My oncologist called with the scan news and I'm feeling okay about it. It shows mild progression in the same old places (Hello, sacrum!) with one (possibly) new spot at L7. Dr. Spiers was prepared to talk about changing treatments, perhaps revisiting Lynparza but I told her I'd rather try going back up to 100mg Ibrance and seeing what happens. She said she would have suggested that but she didn't want me to be miserably nauseous. I don't think being on 75mg has been that much better so we'll give that a shot.
When I consider that I took a cycle off before Christmas and that the progression was quite mild, this seems like a good plan.
It's so weird how a radiology report that might once have alarmed me seems like good news now!
I'll keep praying you all receive good news and I'm thankful so many are getting Covid vaccines.
Jaycee, I'm surprised to hear of the stand-in-line situation for you as I assumed every vaccine place would be a drive-through as they are here. I'm so glad they accommodated you. We waited for three hours but it was all in the car.....weirdly disorganized but everyone was so nice. Like you, I could never have stood in a line for any amount of time. Add that I have an "hour-and-a-half-bladder" so I was concerned about needing to go. They had Port-a-Potties all along the waiting route but I'd rather be shot than use one of those nasty things. We did get a laugh about the world's fanciest hand sanitizer station set up next to one of them! We get our second shots tomorrow and they're assuring people it's a fifteen minute wait. We'll see!
Much love from PatGMcRelieved
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I signed up with my county for the shot. Was quite surprised it wasn’t drive up. Was given a time slot of 3:15 to 3:30. Did manage to find a handicap parking spot, still had to walk in, then wait in a fast moving line. Check in, shot, 30 minute wait time, which was marked on my wrist band, and done. I don’t stand well, next time will take my cane.
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Well PatgMc the news could be worse. Good idea bumping up the Ibrance dose first and try that. You still on Faslodex too? Are they going to scan sooner to see if the Ibrance increase makes a difference?
I took off a lot of time in Feb for my 2 Covid vaccines--- my MO wanted me off Ibrance 1 week before and 1 week after both vaccines. So I wonder what my March 22 scan will look like. I was still on Letrozole and got my Lupron shots though.
I do wonder about catching small changes in my bone mets. We do not do PET's or bone scans, just CT chest and MRI abdomen (to look at liver). Seems so many on here talk about small increases in bony mets and considered progression and treatment changes. I could easily have a new bone met pop up and we would never know. We just look at the status of the liver mets. And if any new organ mets with the chest and abdomen views. I need to ask my MO about that.
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Hi to all, I wanted to let you know that my CT scan showed stable results. I was so relieved and immediately started to think of the flowers I want to plant this spring and get to enjoy for the summer! It's so hard to have to plan from scan to scan every 3 mos. I also got my Fasoldex shots and started my 15th cycle of Ibrance.
Thinking of you all and hoping for good scan results for all.
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Candy, I remain on Faslodex and XGeva and still had those two in December when I sat out Ibrance for the cycle. I remember saying that I needed that break even if it caused me to progress. I got to spend Christmas day feeling ever so close to well and it was wonderful, a gift to my family and to myself!
When I think about having Metastatic Breast Cancer for nine years and having been on Ibrance for four and a half years with a break or two and a 3 month switch to Lynparza, I can't complain. My great hope is to do what I must to make it to the big immunotherapy breakthrough we all seek. I'm trying to do it with at least six months between scans so I spend less time in that scanxiety realm. We'll see how that goes.
I laugh about you guys being in each other's pockets as my claustrophobia says, "Uh-uh, I'll just stay out here and pray while swinging my legs on the edge of the table."
Love from PatGMc
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Pat, That is an excellent scan!!! I would be very curious to know if bumping up the Ibrance helps, Luce used to do that to great effect with Verzenio, and she managed to stay on it a very long time. I had slight bone progression at one point and they radiated the two areas so those just died back in further scans and we went on another two years before more showed up.You could consult a radiologist about that- will have to claim some bone pain, but who doesn't have that? Regarding Lynparza, there will probably be more effective combos coming out for the PARPi in the future anyway, and in the meantime we do have other options in trials like the SERDs or ARV-471, or the androgen booster, or the MORPHEUS trial for immunotherapy with a few MBC drugs:https://clinicaltrials.gov/ct2/show/NCT03280563 Lotsa options, and most fortunately you don't have to move to any of them right now!!!
Lee, Congratulations to you too, and enjoy stable!!!
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