Ibrance (Palbociclib)
Comments
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Hi Ladies, thank you all for sharing your journeys and struggles. I’m taking in your ibrance experiences thinking of switching from Verzino to see if the SEs are more tolerable. Just feel crappy and unable to go far without a restroom, not to mention joint pains and depressing weight gain. Hard to make travel plans when this should be our time to make the most of life.
As Aprilgirl1 mentioned I haven’t shared my dx with many especially work for fear they’ll write me off. Just mentioningMBC people expect to not see you in a couple years.Anyways I’m praying for you all and thanks again for sharing.
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Rabbit - I hear your screams and want to scream with you. So many special things that make our lives better, just are not the same virtual. I'm glad for the effort and sometimes take part, but it is not the same. I have hopes with the Biden administration that things will get better since he has made it a priority, and I think he is sincere. Now I vent. That said, I was suprised when I finally went back to the dentist after almost a year and found out they are barely in line for getting the vaccine - with all those open mouths they have to look at, you'd think they would be near the front. Not being 65 yet, being retired etc, I'm at the back of the line. Just wishing my legislators would spend time on real issues rather than screaming about how masks take away their freedoms or trying to put drug laws into the state constitution or worrying about what gender someone identifies with. My big scream will probably be on Thursday. BC looks as if it has spread to the skin. Regular CTs never suggested spread, the tumor even looked as if it was shrinking. DR thinks CTs missed it, and I have a PET net week. I have a raft/hiking trip planned for April through the Grand Canyon. Covid canceled last year's trip. I refuse to let cancer cancel this one. F*#! the Big C.
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Hello all,
Just wanted to update you regarding the MRI abdomen I had on Wednesday of this week. According to the MO, it showed 2-3 lesions, the largest at 1 cm and several small dots ranging in size from 2-3 mm. Apparently, from what the MO said, he was reaching out to the radiologist to get further clarification since it was not stated as definitive for cancer; however, I haven't seen the actual report yet. While I wish the MRI abdomen showed no evidence of disease, I'm thinking that no definitive evidence may be just what I need to stay positive at this time. Anyway, since my liquid blood biopsy showed Pik3ca positive, I'm being put on Piqray due to the new spinal met and the liver findings. Piqray is a relatively new drug with many side effects, but if it works, its worth it.
Thanks so much for your support!!! ❤️0 -
Katrose,
Good for your MO reaching out to the radiologist. I've found that I've had to push my MOs to do this -- I don't get that at all. Since it's almost impossible for a patient to get to talk to the radiologist who reads our scans, it's good that your MO is doing it for you. You may or may not get much more info without a tissue biopsy, though. TBD.
Depending upon what the radiologist says, you might want to talk to your MO about local liver treatment and see what he/she has to say about that. If those lesions are treatable, you might want to look into something like that. Of course, I am of the whack a mole school of thought on this stuff, so you would have to decide yourself if that's something that you would want to do.
Good luck on piqray. There are lots of suggestions on that thread about dealing with the SEs, so that's your homework for this weekend! Thinking of you.
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Blue-- I'm not on Ibrance, but I occasionally read the thread. I have had cancer on the breast for over two years. Been on lots of TX's and had lots of Ct scans. Only once did the CT report it. It's now the size of half dollar (it's multiple nodules grouped together) I just last week opened up.
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Bevjen - Thanks for the info! I was just on the Piqray thread and got many suggestions and took notes too...LOL
My liver lesions are too small to biopsy, per both MO's and they said that they believe that the Piqray is the best treatment for them, if they are cancer. I asked about surgery and Y90, but again they both feel that Piqray is the best treatment. I have a consultation scheduled with UPenn, Dr. Rachel Jankowitz for February 23rd, so I think I'll start Piqray and then see what Dr. Jankowitz suggests. Trying to cover all my bases...LOL
Thanks for your support - I really appreciate it!
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Katrose,
Great that you're seeing Dr Jankowitz. There is a lobular thread somewhere where someone did go to see her for a second opinion and said she was great. I just don't remember the name of the thread, and it's not been active in a while.
As for size for biopsy -- I recently had what had been listed on a scan as a 1.2 cm lesion. I've had liver ablation before, but with a slightly larger lesion. In any event, since that other ablation was in 2019, I asked my interventional radiologist (and my MO) if I could/should get a biopsy of this recent lesion. MO said sure, IR said "if I can see it." Turns out he could, and we biopsied at the same time as ablated.
I tell you this because if your MO isn't reading scans, and is only reading reports of scans, she may not really know. An IR would be the person to tell you if it's big enough to be biopsied and/or if any other local liver treatments were available. Also, the measurements on scans are not exactly precise, so the larger one could be a bit larger, or it could be a bit smaller. In any event, something to talk with your MO about some more.
On the positive side, you have a plan, and that's great. Please report back and let us know how you are doing.
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BevJen,
It was you who suggested Dr. Jankowitz - thank you! I hoping to discuss biopsy with her also. I'll let you know what I find out from the UPenn consult.
Have a great weekend!
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I tried to get a phone appointment with Dr. Jankowitz a few months ago. Sadly, I don’t live in the state, so she can’t meet with me. I’m too far away to go there. I hope it goes great.
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Latest scans showed stable in bones and lymph node, with breast showing 0.7cm shrinkage from September! It's definitely been feeling softer, but I didn't expect that level of improvement.
Referal is now going through to gynae to get the ooph booked. They were also going to offer me a vaccine today if I hadn't had one. I had a whopper of a response to it over the weekend, and onc noted its very likely I'd had covid at some point to elicit that sort of a response, that the data they had in house was fairly clear between the two groups. Interesting!
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Great news Sondra! Nice also that you also could get the vaccine. I'm under 65 and by my city's protocols, it looks like it will be a while before I get one but I'm trying to be patient. Let's hope that your primary tumor keeps shrinking!
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SondraF - great news! So happy you had good scan results:) Also happy you got the first vaccine shot.
Chicagoan - I am 56 and have to wait for the vaccine - looks like until April or May? Trying to stay patient.
BlueGirlRedState - please let us know what the oncologist has to say on Thursday. I hope you can go on your rafting /hiking trip in the Grand Canyon. I rafted through the Colorado River in the Grand Canyon when I was in high school - it was amazing.
KatRose - please keep us posted on your appt and sending you good energy for great success on Piqray.
RRabbit and everyone - yep. screaming with you on the combo of Covid, covid restrictions and Stage IV. I feel like I am in a constant state of trying to make travel plans that have to be postponed, trying not to freak out about "how much time do I have left", trying to simplify my household/downsize while I feel "good", working full-time while I feel good (once again, can't travel so might as well make money) and .....y'all know the story.
Frap - hang in there! My onc mentioned switching me to Verzinio as my WBC have required me to lower the Ibrance dose, twice - I said no, for now and went down to 75mg Ibrance. I sell real estate and am not often near a bathroom which would be an issue if I had diarrhea side effects from the Verzinio.. Sorry it's been a struggle for you. Regarding joint pain, I have found Fulvestrant less impactful on my joints compared to my 6 years on Femara.
Hope everyone has a good start to February!
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Curious and Katrose - sorry about the progression. Please keep us in the loop!
Eastcoast - welcome. Only a few people know about my MBC - just family and VERY close friends. After 3 months of being on Ibrance and Fulvestrant, I "burned" through a treatment plan. So I understand what you're feeling.
Jaycee - in OR we have Death with Dignity. It's nice to know if I ever get there, I'll have a choice. In addition, DWD isn't considered suicide so it is exempt from life insurance laws. My beneficiaries will be able to collect.
Rhosgobel - Love the old school Press Your Luck.
PatGMcMetazoic - Love seeing your posts!
I've been lurking... with not much to say. I like to stay here because my lynparza thread isn't very active. Not many on it since it's targeted for BRCA+. Just need you to keep me in your back pocket. I have a nuclear bone scan and CT scan tomorrow. My last CT scan in October showed a lesion on my L5 that grew from a June CT (I didn't know about it in June, as it wasn't on my report). In June it was 4mm and in Oct it grew to 7mm. A follow up MRI showed that it measured 11mm.. "may reflect sclerotic metastasis in the setting of cancer, consistent with CT imaging." So after the MRI, it was still inconclusive. The MO wanted to do a wait and see. So now the waiting is over and tomorrow we'll see.
I did have bw done in October and again in December. In that time period, my TM fell 2 points. So I am kind of nervous to see what transpires over then next 48 hours. I really like the treatment I am on. I would like to get the lesion zapped if there's only one on my spine. Maybe it's healed? I also broke down and got a power port in December. I was tired of being poked numerous times. Hope everyone else is doing well.
**edit... Sondra - great results!!
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Sondra, congratulations! And shrinkage for one of us is shrinkage for all so we're dancing up a storm!
Holly, I'm glad you've tolerated Lynparza so well and I pray that the news will be good!
Love to all of you from PatGMc
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Hollyli1202 - in your pocket for your scans tomorrow! It's good to hear that you find lynparza easy to tolerate. How fast do you get your results? The waiting between scan appt and onc appt are torturous for me. Usually it's only a day or so...let us know how it goes! I lived outside of Portland for many years, and really love it there.
Jaycee - I admire the work you are doing towards Death With Dignity. I am in Washington State and we have this in place, like Holly has in Oregon. We absolutely should have a choice, if and when it comes to that point.
Pat - I am glad Holly reminded me of your post, love the metazoic term for mets;)
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Hi Ladies
Just out of interest about the cost of Ibrance in the USA , here it’s 4000$ (3500€) for one box of 125 mg
I am fortunate that all treatment for breast cancer is free
This is my 3 rd week of Ibrance and I don’t feel so good All blood values have dropped and walking upstairs is a bit difficult
Best wishes to all
Ann
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Annadou, you might need a drop in dosage, if so don’t be worried about that.
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Thank you Aprigirl1 for being so thoughtful with your tremendous feedback. Of course everyone's body reacts differently, just something to consider if you're expected to switch to Verzinio and hope your experience will be more tolerable. Just noticed annadou experience on Ibrance, yikes! you just never know from one person to the next.
Hang in there ladies!
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Holly - my MO has a Parp inhibitor (Lynparza was noted as an option as its cleared for the UK) on the list as my genetics came back a surprise BRCA+. I only knew of Pat McG giving it a short try, and remembered there is a Lynparza thread, but it seemed so rare for anyone to be on it. Guess I know why now! Hopefully I won't need to make the switch any time soon, but its good to see that its highly tolerable. Good luck on your scans!
Pat - when are we getting a new painting?
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Hello Ladies,
I just got my CT scan back in my patient portal. I think it's spreading. The L5 sclerotic lesion which they consider "stable" has grown to 2.4x1.7cm, previously 1.3x1.1cm. There's a small pleural effusion starting in the left lung. And then there are some peri-aortic lymph nodes which have increased in size when compared to prior. The largest is 1.1x.9cm. I am trying to breathe, but I feel my anxiety creeping up quite rapidly. Nothing about my bone scan yet. And my MO has yet to call. He may be putting me on a new treatment. Sorry for the "me" post. Trying to digest.
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Holly-I am sorry to hear your news. It's a lot to take in-don't apologize for the "me" post. We are here to support you in good times and bad. Deep breaths. I hope that your MO comes up with a good plan and a treatment that will be effective for you.
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Holly- Sorry to read of your progression. Breathe. When do you see your MO? Hugs from here.
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Chicago and Candy - thanks for making me feel better.
After become Dr. Web MD, I think those lymph nodes are enlarged because of the L5 lesion. They are in that region. I am hoping that because it is bigger, I can finally get it radiated along with possibly the lymph nodes. I don't know why I have a pleural effusion - again. But maybe that can get drained. My CEA results came back. They jumped from 1.9 to 4.6 where normal is 2.5 or under. Ugh. I hate cancer. Maybe just zapping the lesion will get me back to “normal".
For those who have bone mets, am I off my rocker for feeling this way. It is my first one. *sigh* Thanks for listening. I think I will be okay.
On a bright note 2 years - still living with MBC!!
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Holly, I hope you're able to take a deep breath and know this journey is a bumpy one but that everything showing up on the path is not as awful as it first appears. When I have a "bad scan" my oncologist first wants to note which radiologist read the scan as some are better (and less reactionary) than others. He also likes to wait a bit and scan again to see if "the thing" keeps showing up. Sometimes "the thing" is not there on second look and we laugh, saying they must have mixed up my scans. (Actually that did happen to my friend who was basically planning her funeral after the wrong scan results had been put in her file! Yikes! She changed doctors.)
I'm coming up on nine years since my 1994 cancer became metastatic. I remember being frantic over that first bad scan where the "liver tumor" turned out to be fat and the "spine tumor" was benign. Since then "things" have come and gone and there was always a solution. If you can just breathe knowing that God already knows the plan, that will help. It might be radiation, maybe a different pill, maybe some IV chemo and maybe a return to Ibrance down the road. I've done all that and so have many other Dancers.
It's also good to remember that we do what we do so we'll be around to get that fabulous "no-side-effects" cure that's in the works! Just put one foot in front of the other and know that you just have to get through today. I'll be praying for great peace at your house.
[Remember, "normal" is just a setting on your dryer.]
Much love from PatGMc
[ETA: I was sitting here remembering big scares through the years and two more biggies came to mind. Once they felt sure from the scans that I had ovarian cancer. Even after removing the lesion my ob-gyn was nervous and we had to wait days for what he considered "good pathology" saying it was benign. Another time I had a lesion removed from the skin on my back which the nurse (my friend) said was certainly MBC. It wasn't.]
I hope I've belabored my point enough, Holly! Ya' think?!
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Sondra, you shouldn't have asked!
This crazy piece was just hung in a show yesterday. In light of the TV news lately, who could be expected to create anything sane?! Shoot, I couldn't even photograph it straight!
"American Gothic...or something like that" [Cherry's fixin' to take this show on the road!]
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Pat - “Life with a Cherry on Top”. Love that one. Love all your pics. ❤️ Thank you for your words. They mean a lot.
I am at peace right now, as I finally talked to the MO. Radiation is planned for L5. The bone scan found another lesion on the head of my right humerus bone near my shoulder. So that will be bone biopsied and then radiated as well. I stay on Lynparza with possibly starting Keytruda. The lymph nodes are normal and he can’t find the effusion. So, it is a 50/50 report. Like Cure-ious, I went down the rabbit hole only to love my MO. He even said that I probably don’t like him. I said I do like him, just don’t like my body. MO made sure to call the radiologist and the IR before calling me. He knew what questions I was going to ask him. He is so responsible.
Again- thanks for all the love and support. And thanks for allowing me to stick around on this thread. I may see if going back to Ibrance (after biopsy) is an option. Maybe mixing things up to confuse those pesky cancer cells.
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Hollyli1202 - your plan sound good and it is reassuring that your Oncologist is responsible and sounds overall great! Mix it up, definitely confuse the cancer cells and kick them to the curb. Never apologize for sharing info and a "me" post - you are with friends and friends that truly understand the ups and downs we are enduring. Please keep us in the loop - when will you have the L5 radiation?
Pat - love the new art "Life with a Cherry on Top". Fantastic. Thanks for the reminder that you are coming up on 9 years with mets (metazoic!) . And you are creative, lively and an inspiration!
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I’m still hanging around here too....this was my first home. Start Xeloda tomorrow and also a nuclear bone scan after Faslodex failed miserably and ended up with a large effusion and 5 days in hospital with a chest drain - also a spot now on my spine. Still recovering 2weeks later. Got a call today to go for COVID vaccine on Tuesday....that’ll be interesting 🤔.
Nice work Pat!
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There are so many people here to comment to so I'll just give you all a virtual hug and want you to know you're in my thoughts and prayers always. Love to you all.
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Annadou, I still lurk on this thread because it was my first and I feel comfortable here, but I couldn't find anyone who answered your cost question, so thought I would chime in. When I was on Ibrance (until 6 months ago) the cost in the US was $11,000 for one box of 21 pills. Thankfully my insurance paid all but $150 of it and Pfizer reimbursed me the $150 in their co-pay program. I have moved on to a different treatment and my co-pay is now only $10. It is way too expensive here unless you have insurance. Chris
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