Ibrance (Palbociclib)
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Fightingirl - I lost about 14 pounds after dx in March due to anxiety. Then I discovered I had several compression fractures that had shortened my height by two inches. So now with the 14 pound weight loss I was perfect BMI. But. Here comes the letrazole and I’m gaining weight again already. Talk about a yo-yo!!!
I have had just one Zometa treatment so far and had body aches chills and fever the next day. I’m trying Claritin next time too.
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I know these studies are necessary but I read this report and just wanted to say, "Duh!" Would any of us doubt that you would find less neutropenia in people on 100mg Ibrance than with 125mg?
https://www.targetedonc.com/news/reduced-palbocicl...
I didn't read the last part of the piece concerning cold caps to avoid hair loss during chemotherapy. I had a friend who did it and it worked but she said it was some kind of miserable and expensive. Had I known I'd still be without hair 7 years later I might have done it anyway! There are days being bald doesn't bother me but some days I'd love just to brush my own hair. I will get to do a fun bald routine when I speak at the Komen Survivor Luncheon next month so there's that.
Love and Happy Sunday from PatGMc who enjoyed all the lovely pictures!
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for those who get xgeva (and not zometa), do you take Claritin before infusion also?
And I get exhausted and loopy from both the coming down post-scan stress and anxiety as well as with injections of xgeva and Lupron (I get these at same time). I typically am wiped out for a few days afterwards and always am wondering why.
Sounds like you got the double whammy. Hope you’re able to take the time you need to rest lov
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LoveFromPhilly, is xgeva similar to Zometa? I'm glad to know I'm not the only one who goes down for days like that...I'll bet it's a combo of the medicine and the anxiety.
Also, what is Lupron? I get an injection of Zolodex to shut down my ovaries? Is it similar to that? My place in Idaho would give a shot of lidacaine to numb the injection area but here in Phoenix they just shove that big needle on in with no numbing! It's no wonder I get anxiety and have a big drop off after that.
No matter how many times I sit up in a chair to get an IV, a blood draw, or injection of some sort, I get nervous. Can anyone actually get used to that? Every month at my "big" appointment (oncologist, blood draw, infusion, injection day) I have to have a happy thought...something to look forward to. Kind of like a kid...I promise myself something I will get or do after I'm done.
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LaurenH: I see that you are both ER+ and HER+ . And on Ibrance and Herceptin. I have now become HER+ and am being put on Herceptin and Perjeta but being taken off Ibrance. How is the Herceptin working for you? O am still ER+ but no longer PR+.
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Fightingirl, I didn't have much anxiety at the clinic until the techs started to have trouble accessing my port. Even though one person gets it every time and I request her, I get anxious enough when they call my name for the lab that my heart rate zooms. It takes most of my appointment to calm it down.
If we ever think our thoughts don't affect our bodies, here's a great example!
You might want to google "laughter yoga" and see if this helps your nerves. I find that fake laughter, crazy as it sounds, helps me with anxiety before I make speeches. Just a series of Ha-Ha, Hee-Hee, Ho-Hos is helpful. I'm too rattled at the clinic lately to use this.
I take XGeva for my bones and have several days where my energy is even lower than usual and about the third or fourth day my mind feels like a breeze blows through and clears it. It's really strange.
I hope this gets better for you.
Love from PatGMc
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LovefromPhilly - I get the xgeva shot in my belly every 12 weeks with no issues at all, where do they inject you? As the wise ones here will advise you, there is over the counter meds to take to help.
Fightinggirl - Zometa is an infusion and xgeva is a shot, both for helping with bone loss from the residuals of treatment I am thinking...
PatgMc - Just want to let you know how much I enjoy your knowledge that you share! Thank you.
Have a great week everyone...
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I was a firm believer of the Claritin when I was on Xgeva monthly shots. I took it two days before, the day of, and two days after. I've moved down to Prolia (same drug, lower dose) once every six months, and it doesn't bother me at all, so I don't take the loratadine anymore.
I've mentioned it before, but the generic Claritin (Loratadine) works just as well, as is cheaper. If you want a LOT cheaper, get it at Costco - they charge about $11 for 365 tablets (they call it AllerClear).
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I never had to take Claritin for Prolia or Xgeva. No SE's at all.
Aren't we lucky to have a pharmacy expert here? Thanks, Ciaci.
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Hi All - Had scans today and my Dr Angel just called to review reports with me.
Progression to liver (3.9 x 3.2 cm), new left femur lesion and most exciting of all...blood clot to portal vein (liver).
Short term plan:
1. Stop Ibrance as it has failed.
2. Start Eliquis tomorrow.
3. Decided between Afinitor and Xeloda on Wednesday at my appt with her.
This is not really what I expected to hear but here we are. Thank you for being here to tell my news to...
Gumdoctor
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Gumdoctor-- Sorry to hear of your progression. How long were you doing the Ibrance Dance? Hope you stay posting here even though moving from Ibrance. Hope the next treatment is good to you and you get a long run on your second line treatment. I haven't faced progression yet, and wonder when it will come. Fun Fun isn't it.
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Sorry to hear this news Gumdoctor. Hope that whichever treatment you decide upon kicks cancer's butt. God's peace to you as you decide upon your next treatment.
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Gumdoctor
You have a great doctor. Sorry to hear about your progression though. Hopefully this next one will do the trick. I expect a lot of the knowledgeable ladies will chime in here.
Sending a big hug your way. No way to prepare for this news.
Tanya
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Ibrance - in middle of cycle 19 right now. So it sid its thing for 18 mos.
Gumdoctor
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hi gumdoctor,
Ah man...I’m sure you’re feeling all types of emotions right now. I feel like you received the news we are all dreading and anticipating receiving any day ourselves. My heart is really going out to you.
It’s like it is inevitable but if you’re anything like me, I keep hoping that I’ll be one of those exceptional responders to treatment and also am quite nervous about progression
My love to you and I hope this new treatment regime lasts a long long time and is easy on your body.
Hugs,
Philly
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Sorry to hear about your progression. Good luck on your next line of treatment!!
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Gumdocter,
Sorry to hear about your progression. I hope your next treatment works well for you.
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Gumdoctor, so sorry to hear this news. I am praying you all select the right next treatment and that it works for a long time. I will be praying for your appt Wednesday.
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GumDoctor - I’m so sorry to hear your news. I am praying your new combo is just what your cancer needs to disappear. I was so hoping you were stable - and I know you were too. We are here for you.
Elenas- yes , I am Her2+ and ER+, but no longer PR+. My doctor decided to do the Ibrance and Faslodex with the Herceptin, even though Ibrance is not approved for Her2+. He believes it’s just a matter of time before it is approved. He also gave me Herceptin in 2003 with my original dx (18 months then) before it was approved for early stage and we both believe it’s a big part of why my aggressive cancer took 16 years to show back up in my rib. I don’t think I have any side effects from it at all. Nor did I the first time, as I took it with taxotere (after AC) and then by itself for 12 months. You have to have your heart ejection fracture checked every 3 months but mine has never dipped - then or now. I am allergic to it though so I have to get a bag of benedryl with it. Let me know if other questions.
Love to all and big hugs to GumDoctor.
Lauren
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Gumdoctor - so sorry about theprogression. Definitely not the news one, or any of us, wants to hear. You are in my thoughts and heart as you figure out the best course of treatment. I love your garden, by the way. It makes my heart swell.
Pat - thank you for the Lynparza lindy. You sure do know how to brighten someone's day.
Into - was it you who crochets? I love what you made. Keep it up!
Flight - I am on zometa infusions every 6 months. It is to help with bone density because of my lack of estrogen. However, now that I don't take an estrogen blocker, I may not have to do the infusions. I take zyrtec nearly daily, so I don't know if that helps too. I remember my first zometa infusion... I thought I was going to pass out from the flu like symptoms. Now it isn't so bad. I just feel a bit achy for a few days. I too get anxiety when I get blood draws and IVs. I have tiny veins and they tend to get blown out. The blood suckers can only get from one arm due to lymphadema in my other arm. Good luck on Ibrance.
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Gumdoctor sorry for your news. I wish there was something I could do for you- for all of us. Stay in touch.
Gailmary
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Okay, Gumdoctor, let's get our minds wrapped around a plan! I'm voting for Xeloda! Ask your doctor to start you with the lower dose so you don't get the raw skin on your hands and feet. I can't count the number of people I know who have responded to it and tolerated it well. This could be the drug that gets you to one of the new miracle therapies. Even if you also did this one for 18 months, something else will be on the market. I believe that with everything in me.
About that liver: Think about getting yourself an appointment with an interventional radiologist. Remember Grannax and her Y90? I'd be jumping up and down for that.
The femur: Is it hurting? If not, you can leave it alone and watch the Xeloda work magic on it. If it does hurt, consider getting it zapped with radiation.
The clot: You've got that handled with the E.
Don't think of Ibrance as having failed, Gumdoctor. You might one day revisit it. It did well for you for 18 cycles and may one day do it again.
Okay, I'm feeling better about all this, my friend. I'm praying for peace and wisdom and less fatigue!
Keep dancing the Ibrance dance while it's still in your system. We'll find you a new one.
Love and a huge hug from PatGMc
Edit: I found your dance! The Xeloda Zouk from Brazil! (If that doesn't power up your liver, nothing will!!)
Another Edit: Do you get XGeva injections? I had large femur lesions that turned to healed tissue so fast and my oncology nurse said she bet XGeva had a lot to do with that. She learned that they think XGeva actually, besides strengthening bone by pulling calcium from the soft tissue, also surrounds the cancer cells. I'm good with that theory!
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Gumdoctor, as everyone above has said in one way or another, my heart goes out to you. I too hope the switch up will be just what you need for now and like someone else said, perhaps the Ibrance is still in your future again and also agree with PatgMc, there will be something else coming along for us!
Holly - I actually did pass out on my first infusion! Got up to use the restroom at 4 in the AM and luckily realized what was about to happen and called out my husbands name...he found me passed out on the toilet. He said my eyes were open but I was unresponsive and it scared him half to death. I actually ended up in the hospital later that day for 2 days. They had started me on the Tamoxifen, gave me Zolodex, the Zometa infusion and put me on a long acting morphine and my body just couldn't take it all. I was sicker than I've ever been.
I too have the same issue with veins like a bird and only one arm that can be used. I am scared to get a port! I am bruised still as I type this from a blown vein at my PET/CT 17 days ago!
PatgMC, I have actually tried some laughter yoga...I did about 10 hours a week of yoga prior to this damn diagnosis but that is one that I'm still able to do...I'll have to try it!
Love to you all and BIG virtual hug to Gumdoctor.
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gumdoctor - I echo everyone eles’s sentiments and hope that the next treatment is the one that stops your cancer in its tracks. We are here for you when you need us. Kitt
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Fightingirl, I'm another with pathetic veins done in by Adriamyacin back in 1994. I hope you will reconsider getting a port. It has been so life-changing for me even though I've had some periods where it was tricky to access. The days when the clinic/hospital had to line up people to try for a vein are some of the worst of this journey for me.
I've often said they would have to chase me through the woods to take this out of me, I pretty much mean it!
Please get one!
Love from PatGMc
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Why does it feel like more and more people are posting that Ibrance is working less and less. I feel like when I first came here I was hearing about people that were over 2 years with it working... Now I feel like I hear 2 months then stopped, 6 months then stopped. The most I heard recently was gum doctor at 18 months....
Kind of scary I laid in bed last night thinking I am on my 2nd cycle of Ibrance and I felt a little nagging pain in the place where my liver is ..felt like the little bit of pain I had after the liver biopsy nothing major or anything near that just like an uncomfortable feeling. I couldn't help but think is this not even working and I am wasting 3 months time here....
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NicoleRod-- I hear ya. But there are ones out there that have been on Ibrance for a while. I cannot keep us all straight sometimes (wish I could put faces with names to keep me straight) but PatgMc has been on for a while and someone, who ?, posted 30 cycles. I am on cycle 18 myself. We never know how the drug will work for each of us as we are all different. I hope for more cycles on the Ibrance Dance, but who knows. Yes Gumdoctor's news did kind of spook me (as Philly commented) because I am also at cycle 18. Just want to hang on to this treatment as long as I can (more tolerable than others). The fun of MBC, the uncertainty. And that is not me. I don't like surprises.
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Gumdoctor--- Just thought of something. Since you have progression and will be changing treatments, has your MO said anything about retesting things? If change in ER/PR/HER2 or mutations? This is what is confusing for me. We talk about status can change and new meds coming out for mutations. So.... do we retest with progression? Or as you mentioned in your post, do we just stop Ibrance and move to another drug (in your case Afinitor or Xeloda). Is Ibrance the culprit, did it really fail you?
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NicoleRod, I have been on Ibrance for 38 months now (cycle 41?) and still doing well on original 125 mg. There have been small flare ups the last 2 scans but they usually resolve by next 3-month scan. I am expecting progression any time now but will take as long as I can manage. I had original mets to many bones and liver. The liver has been clear for over 2 years now with no new mets. I just wanted to add my encouragement that it is still working for me. Remember that whoever comes to our chat is not a scientific cross section of users so the numbers will be skewed (not reliable data).
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