Ibrance (Palbociclib)
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I had my scans today - Bone and CT. Both are basically stable with no significant progression. I'll take it. Will cross post on the Bone Mets Thread.
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Sunshine99,
Great news!
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Thank you Candy
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Sunshine, that is great news. Yay
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Sunshine- WOOHOO !!! Congrats on stable !!!!
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Congrats Sunshine!
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Wonderful news Sunshine!
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Sunshine, Super news!! Congrats
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Awesome news Sunshine!
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Congrats sunshine!! Woo hoo!
Bone scan came back relatively stable, very slight progression. So I'll take it as stable mable. This is the 2nd bone scan where its said relatively stable and noted small increases instead of a straight stable like other scans.
Deep breath, CT tomorrow. Curious how lungs look ( nodule in lower right lobe and air sacs irritation bottom of both lungs keeping eye on, popped up last February) and if they still see haze in the mesentery that was noted last scan that they say was in previous scan to that but not noted in report. Spleen has always shown nodules (and an accessory spleen, ha!) and calcification which they attributed to chemo damage when first diagnosed stage IV. Let's see what my insides have to say this go around.
Hope your having fun April on your birthday getaway!
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Yay, Sunshine! Happy for you.
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Quick question - how come some ladies are getting bone scans? I brought it up with onc this month if there was ever a reason to do the bone scan again and she said unlikely as the CT and every 6-8 months full spine MRI will pick up anything to be picked up (obv with scans moved up if reporting pain). My mets aren't diffuse, though, does that make a difference?
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Sondra-I wonder if it relates to differences in standards of care in countries? I get both bone scans and CTs every four months but have never had a spinal MRI. Some times the bone scans seem useless because they are so vague=with wording like "might be arthritis," etc. I have had numerous bone mets so I know that they want to keep an eye on them. I think MRI's are very expensive in the US and insurance prefers the bone scans.
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Sondra,
I also think to some extent it's a matter of doctor preference. My MO isn't totally crazy about nuclear bone scans, but she will order them maybe once a year or so. She's also not crazy about MRIs, but they do seem to show a lot more detail for me. I hate those stupid bone scans!!! I also get CTs. Those seem to be my doc's main preference. In fact, after just having two different MRIs of my back (covering the thoracic and lumbar spines) today she wrote me something about getting a CT soon -- I almost lost it. I think we are very inefficient in the US about blood work and scans, and sometimes it's like the docs are throwing a dart and hoping to find something.
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Sondra- I have only had 3 bone scans in my 3 1/2 years of MBC. I have arthritis and I think bone scans are confusing for me as they light up and unsure what is arthritis and what is cancer. My MO did mention getting another bone scan soon since I had progression in liver on abdomen MRI. Last bone scan May 2020. Never had spine MRI for mets---- have had MRI for chronic back issues---before cancer diagnosis.
Rabbit- Congrats on stable bone scan. Pocket duty for CT.
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I've never had a bone scan and my MO has never mentioned one. Just CT every 3 mos.
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Good news sunshine. Rabbit - hope that sun shines on you too.
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Miss Rabbit...so glad your bone scan shows only small increases. In your pocket for tomorrow.
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ThanksTany much appreciated!😘
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This is an interesting comparison on our scans. I get Nuclear Med (bone) and CT scans every three months. I'm one year into my mets diagnosis and will see my MO tomorrow. I'm assuming, she'll want to continue with the 3-month schedule. I've only had a couple of MRI's since my mets diagnosis. The most recent one was because I had a couple of weird incidences of severe dizziness - like my head was buzzing. The MRI didn't show anything of concern.
We'll see what she says tomorrow.
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Sondra, I had a nuclear bone scan recently only because the CT showed up bone mets for the first time and my MO said the bone scan would probably show up more which it did. Never had an MRI for the cancer.
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Thank you Rabbit, RosieRed, Tanya for the well wishes, I am home now from the hospital on oral antibiotics, after having febrile neutropenia. Oncologist said we can re-start ibrance at a lower dose once my blood work is back in normal range, although I definitely feel a bit nervous about trying it again! It seems like the efficacy of ibrance is the same no matter what dose you're on, though?
Congrats to Sunshine, and woo-hoo to Rabbit for your recent bone scan results! Hope the next one is positive, too. Also hope AprilGirl is having a great birthday on the Oregon coast, so beautiful there!
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I’m new here. Mets to bones and a few lymph nodes near lungs.
Was anyone else prescribed Ibrance and Letrozole while they were menopausal but not yet post-menopausal?
I have taken Letrozole for 6 days and Ibrance once, started last night. Terrible nausea today. Was anyone else nauseated and how long did it last?
Thanks
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Sorry to hear you joined the mets group GoKale. I initially had nausea but it went away after several months. The side effects get better as time goes on. I used to drink ginger ale to help with the nausea. My MO also prescribed some anti nausea meds which I used a few times.
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Ibrance Dancers-I've prepared a yoga video to share some poses that have been helpful to me in dealing with some of the side effects of Ibrance/Letrozole, such as stiffness and muscle aches. Check it out if you are interested https://youtu.be/BPOANpfxN_s
I hope to do more of them so I would appreciate your feedback. Thanks!
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Cross- posting-----
Ok, I got my Guardant 360 results. Does anyone know about how to read the report???
From what I can tell, Negative. I mean no help.
Says.... "No reportable tumor-related somatic alterations were detected in this patient's sample. This may be due to either absence of reportable mutations in the tumor itself or low levels of ctDNA.".
So, what next? Not showing ESR mutation, so AI still working? Not showing Rb mutation, so CDK still working? So why progression? And where do I go from here?
Wonder how much I will owe for this test, and no more information to work with.
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Candy,
I didn't have Guardant, but I had Foundation 1 tissue and liquid and Tempus tissue. My liquid biopsy did not pick up nearly as much as the tissue biopsies.
A tip for you with respect to any tests like this, or any new drugs -- you need to find out who at your cancer center can advise you as to how you apply for financial aid -- for Guardant, it may be a very quick form online. Google the site and you will see it there, I'm sure. You should look, because I know a lot of these companies will give you greatly reduced prices. That one you can probably fill out yourself and maybe still submit it before you are billed. There is no shame in doing this if you meet their financial criteria.
For expensive drugs, you need to find out who the financial person is who works with the drug companies. From what I've gleaned, most of the big centers have someone who does that, and surely Wash U would have someone. You can ask your oncologist or nurse practitioner who that person is, or get the contact info for the pharmacist who works with the cancer center and they should be either able to help you or get you to the right person. There is absolutely NO POINT in you paying for these very expensive tests and drugs if you are able to get a reduced price.
Sorry you didn't get more info but, like I said, if we didn't have my tissue reports, we would know zippo. And I have something like 25 somatic mutations, and at least 4 that are actionable. So I thought the tissue tests were well worth it.
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Candy- That is the key question- what has happened that enabled the mets to grow on current therapy? Perhaps there are major ways that endocrine resistance develops that are yet to be discovered by science (but how can that be possible, after all of the research)? Anyway, the existing system is not at all clear about guiding us to next steps. Plus we need the FES-PET scans to at least tell us whether the cancer still depends on the estrogen receptor or not, where is the national strategy to roll these things out?! And then you have to wait four months or so to find out if the next step is even working..
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Don't know much about this. Last Onc visit he said he wanted to do some tissue sampling, I asked if he needed a biopsy and he said no the one they had from the beginning is good for ten years.
I asked about Fountation One and he said he didn't like it. He says it picks up mutations that we don't even have a treatment for. So, in 4 years this is the first testing that I've had.
S
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Thank you Chicago. That ia exactly what I need
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