Ibrance (Palbociclib)
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Hi ladies,
I hope all of you are feeling good today. Wishing all who are having upcoming scans good results and minimal scanxiety while waiting.
Stef, my daughter is going to Bucknell University in PA. This is my first so the whole experience is new to me. It will be a busy summer.
My blood work after being a week off my first cycle (125 dose) showed my WBC and ANC came back up but my ALC (absolute lymphocytes) didn't yet. It was already low as they took a dip after spine rads in December. Anyway, I'm not starting up again until after vacation since I'm traveling out of the country. Onc is putting me on the 100 dose. I'll do blood work as soon as I get back and go from there.
Any tips on raising specifically ALC with supplements? I just started taking astragalus so we'll see if that helps. I already take vitamin c and iron and the calcium. My Onc does check my calcium levels before xgeva shots too.
Joanne
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Myra I forgot about Kelly Howell. I used to do her guided meditations for healing when I was first diagnosed. Agree that she is wonderful. I am going to get more of her meditations from Itunes. I do meditate at night and also listen to healing music. The group 2002 has some very good music for meditation and healing. I've gotten most of their music from Itunes also.
For the blood counts you can take Shark Liver Oil twice a day after meals. Also Blackstrap Molasses mixed with water is suppossed to help both red and white in addition to Maitake D Fraction drops.
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Pearlady, do you buy your supplements online? I was wondering the best place to purchase. Thanks for the help! Your information is invaluable. I don't know what I'd do if I didn't have this site.
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Hello All,
Is anyone getting Prolia injections? My MO has recommended this as I am osteopenic, probably due to long term use of arimidex. I would like to hear from anyone who has tried these injections or is currently on Prolia. Previously I was on Fosamax for about 10 years.
Kathy
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Hi Kathy,
Prolia is Denosumab, the same drug as Xgeva. Many of us who have bone mets are on Xgeva, as it is a more frequent and stronger dose of Denosumab than Prolia. Prolia is prescribed for osteoporosis, not mets, and is given once every six months.
I've been taking Denosumab (Xgeva) for the last four years. The first two years I got the shot once a month. After two years, my onc dropped me down to quarterly, where I am now. I have no side effects from the medication. Some women do have some fatigue the day or so after the shots. I imagine the side effects when getting the drug may be similar, but probably less, since the dose is smaller.
The worrisome thing about the drug is the possibility of ONJ, but that happens to a very small number of patients, and usually after taking the drug longer than two years. Your doctor may have more information about the statistics regarding Prolia. It's a much lower dose, though, so I imagine ONJ would be rare.
Prolia- Dosage is 60mgs every six months vs. Xgeva @ 120mgs every month. Quite a difference.
Xgeva has really helped me a lot. Filled in my broken bones after radiation and helped with pain. I also think it makes the bones a less hospitable place for cancer to grow, and my bone mets have been stable for the 4 years on the drug.
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Hello all,
Dropping in to add some info to the data pool here. I've been benched until my numbers rebound. So no more Ibrance for me (had three rounds at 125mg) for the time being. My ANC hung out at around .6 the entire time and my onc isn't willing to push it any further, especially since now my red counts are in the tank too.
I have a scan scheduled so let the scanxiety commence! Not looking forward to that awful wait for results but it will be good to know if there's been any change for me. If the Ibrance looks like it's working or holding me steady my onc says he'll continue the med at the 100mg dosage. We're also double checking my total estrogen levels which came back uncomfortably high last go round. Onc says he's never seen levels like mine in someone who has had ovaries removed. And I don't even look at dairy anymore, or soy for that matter... just in case. Very little meat. Have no idea what's going on with that. Weird.
Hope everyone is making it through the week ok and wishing good results for us all.
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Thanks for the info, i am trying to anticipate what if any side effects there might be with Prolia.
After 22 years of BC , (stage 1 , 4 local occurrences) I am trying to adjust to life with this new DX and become more informed on various drugs,in order to ask better questions from my MO. Sometimes I wakeup and think this didn't happen, but sigh, it did.
Another question.
Has anyone done genetic testing?
Tomorrow, I see a genetics counselor and will decide on the testing
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Hi Max_otto, my mom just had genetic testing done. Her first bout with bc was in 1994 and she had the brca testing done shortly after -- both came back negative.
We met with a genetic counselor who suggested she take it again since there have been advances in the testing since then. So she retook it (it tested for both brca genes as well as 15 common others). They all came back negative again.
Her initial diagnosis, she was 37. My cousin was also diagnosed with bc this year at 37. Due to not having anything come up but having family history, I have a familial risk which our genetic counselor says puts me from the average 12% to 28%.
My mom is now 4 years into Stage IV, did great on hormonal therapy for three years, has been doing pretty bad since the fall. Hoping Ibrance is the winner after a lot of disappointments. This may be her last option.
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Sarah,
What you have related is certainly something to weigh in the balance of deciding whether to go ahead with the testing. Even if everything comes back negative, it still may be useful for my daughter. Like you she has family history, both her grandmothers had BC and her first cousin passed away from BC in her early forties.
Thanks for sharing this, at least I won't have any unrealistic expectations.
On your mom, I hope for the best, she has a wonderful daughter.
Kathy0 -
Max_otto Hi Kathy, It was good for us to get answers, even if the answer was "there's no known gene mutation." They were able to assess risk even when that was the answer.
It may be really good for you to meet with the genetic counselor just to talk it through. I didn't know what to expect and she was super helpful and explained how it all works and how genetics play a part. I mean, as you know and we have seen, breast cancer has no rhyme or reason sometimes. Lots of people with low risk get it and lots who are high risk don't. But what is good about the testing is you can get a clearer picture of the risk in the family and that can help with being more proactive in the future. For example, since my risk is higher, I can qualify to get an MRI earlier than most and have screenings more often than the average woman.
Something that the genetic counselor told me too was that people are different and some may want answers and some don't want to know. She has patients whose moms tested positive for BRCA, so they had a 50/50 chance of carrying that gene mutation, and the patients decide to not get tested. It's definitely an individual decision. For me, I am a "information please!" type of person, so testing was a good path I think.
Thanks for the kind words! Wishing you the very best and that Ibrance does wonders.
xo,
Sarah
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Hi All,
I'm thinking about starting Ibrance. Not crazy about the low white count and I see many of you have experienced that. Been on Faslodex for 4 years now. Completed spine fusion surgery a year ago due to mets that were in my spine and ribs. That recovery took a long time. Then had a bad reaction to dexamethasone. Trying to weigh the risks and benefits right now. Thoughts?
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Hi again
Just had PALB2 genetic testing. Has anyone else had that test?
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I'm asking my oncologist about Ibrance today. Will report back.
Tina
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Hope, have not seen u in several days. I am hoping you are doing ok. Myra.
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Tina, Looking forward to hearing the doctor's thoughts on Ibrance and your treatment plan.
I have now taken Ibrance for 6 days and so far side effects don't seem overwhelming. My scalp is tingling but no hair loss, and my gums are tender. My temperature has stayed well within the normal range, varying about 1.5 degrees. I have continued to take the drug during dinner since that is really the only substantial meal I eat on any given day. I have had a few episodes of feeling "off" but nothing that is definable.
*susan*
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Hi Lindalou, welcome! I had spinal decompression and fusion last fall and I know what you mean by long recovery. I'm still recovering but I think I would have been paralyzed if I didn't have the surgery and it certainly took care of the pain issues. I think generally people here are coping well with side effects, the biggest being the low WBC but doctors seem to be tweaking the dosage or delaying starts to keep it manageable. Let us know what your Onc says.
Tina, good luck with your appointment today.
Hope, wondering how you're doing too. Hopefully you are just busy packing for your trip.
Wishing a pain free day to everyone.
Joanne
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susan- your SEs sound a lot like mine on the 125. I had that weird itchy scalp, but it went away and didn't come back on the 100mgs. When do you go in for your blood work?
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Starting my fifth cycle tonight. I think I'm the only one still taking the 125. Have not really had much of an issue with low counts lately, but I attribute that to the multitude of supplements that I am taking. Lately I have been quite diligent with the supplements and also doing the blackstrap molasses which is said to be good for red and white.
Initially I had some issues with mild nausea, but not after the second cycle. Also had the scalp tingling in the beginning, but not lately. My biggest issue continues to be difficulty sleeping. Have some stiffness when I get up in the morning or after sitting for a while from the Femara, which I had previously when I was taking it. Even the minor side effects I've had are nothing compared to what I've had on chemo in the past. My energy remains pretty good. Of course I'm most concerned with whether it will work long term. The other things I'm willing to deal with.
I'm hoping that Hope is off on her Alaska cruise and is enjoying herself.
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Joanne,
It is good for me to hear that someone else has gone through spinal decompression. No one I know has metastatic breast cancer and no one has undergone surgery. Helps me cope hearing from you. I appreciate the comments on Ibrance. Undecided about it at this point. Good for me to hear different results from all of you. It looks like I can start at 100mgs of Ibrance instead of 125mgs? Is that correct?
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Ok well went for my infrared sauna and foot massage today. AAAAAHHHHHH!! Time for a nap, what a slug I am. Myra.
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hi lindalou,
I also had verebra collapse from mets. I did radiation, Faslodex and Xgeva - decided against surgery.
If Faslodex is still working for you, I'd stay with it for now. Those are my thoughts. You can always add something or switch it up later.
What dose you start with Ibrance seems to be you and your doc's decision. Jury is still out on effectiveness for most of us.
Myra-you deserve a nice nap! No need to apologize.
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Myra I'm so glad you loved it. How long were you able to stay in the Sauna? I only lasted 40 minutes, but hoping to improve next time. Going on Sunday evening for the sauna and foot reflexology.
I agree with Sandilee. If the Faslodex is working you should stick with it. Why use up an additional option when you don't have to.
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I was in it for 30 minutes which was enough for the first time. I also got the maitake drops. Did 6 drops, not bad. Myra.
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Reporting back from the field:
When I asked my oncologist about Ibrance, he told me some of his patients are on it. He was very positive about the drug's promise, but added "It's not a walk in the park, you know." When he said Ibrance has been approved for only first-line use, I replied that it was also being used in second-line treatment. He acknowledged this. He wants to hold off giving it to me because I'm doing well on Faslodex, adding that Faslodex and Ibrance would be my next treatment should Faslodex fail. He'd scan after three months. If that combo was not working, he would drop the Faslodex, and treat me with Ibrance and Femara.
This sounds like a good plan to me.
He's also starting me on Prolia because my spine is osteopenic; strengthening the bones may help prevent bone metastases.
I left with an Rx for a CT of my chest, abdomen and pelvis. As long as I'm asymptomatic, I'll get scans annually-- one year PET-CT, next year CT and so on.
I left feeling good about my doctor's experience and knowledge, pleased that he did not resent my research and questions, and happy that I'd done my homework.
Tina
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Sounds like a great plan Tina. You asked the correct questions and got informed answers. Myra.
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Here is an article regarding the benefits of Maitake drops.
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pearlady you are a boss! pushing through on 125mgs. yes! wishing you great great results.
myra - i'm officially on the hunt for an i-sauna/foot massage combo. you make it sound sooooooooo niiicccceeeee.
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good news ladies! I FINALLY got the approval from. My ins. Co to cover Ibrance. PHEW!
I was supposed to start the second cycle yesterday but hadn't gotten the go ahead, which I just got today. (Thank god) So tomorrow, bottle in hand, I will start cycle 2. Only this time at 100 msg instead of 125
Also, thanks to my sisters here, I have sworn off Ambien and started to take Deep Sleep at night, and B12 in the am.
Hoping things will start looking up from here, as far as sleep and energy.
Feeling positive.
Stefanie
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Tina2, that sounds like a very good plan. Faslodex alone is a lot easier than adding the Ibrance, mainly because of the blood work that needs to go alone with it in order to get the right dosage and cycle timing. But it's not that bad, really. The side effects are minimal.
I hope Falsodex continues to kick your cancer's you-know-what for a very long time!
Fantastic news, Stefani! That must be such a relief for you!
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Hip Hip Hooray Stephanie. Finally. Good luck with the drug.
Sandilee, the sauna is hot as **** but the aftermath is great. My spa has you shower off the toxins. Bring shampoo and brushes and you get a fantastic complete afterglow.
Good numbers and no pain to all....Myra.
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