Ibrance (Palbociclib)
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I was very down at my monthly appointment last week.
The NP was a new one. She was like an angel sent to lift me up. I told he I was already fretting about my next scans even though they are still two months away. I said that being the on this combo 2+ years I know my time until progression is running short.
She smiled with optimistic compassion and said these days even progression isn't such a big deal. She said she admires my MO enormously.My MO is a magician. One with many tricks up her sleeve.
I bet that many of you have magicians in your court too. I wanted to share this and share some hope.
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Yes, Penny, let us celebrate the many magicians (doctors, NPs, nurses) who treat us and those who work in research labs! Give your new NP a hug for all of us!
Love from PatGMc
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Well I am going to see MO tomorrow for an unplanned office visit. I have had A LOT of new pain this last week and I texted my MO yesterday to see if she could see me Monday morning. ( She gave me her cell number when she became my new MO and I had never used it until now.) The pain is in my sternum, spine, shoulder blades and neck. And the neck pain goes up the back of the head and down the arm to my fingers. The neck and spine pain is worse at night when lying on my back and the sternum pain worse when turning over on my sides in bed. And is a dull pain all day. I am going to ask for an MRI of the neck and spine---I have never had one. I wonder if the bone mets is worse or pinching a nerve in the neck? Maybe a fracture in the vertebrae in the neck? Kind of creeps me out. Is things worsening? My sister called me yesterday concerned. We didn't voice it but we were both thinking the same thing--are things progressing.
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Hello All,
Penny I like your NP's positive attitude. I was thinking what you just wrote as the treatment works and we tick these months off and get used to Ibrance SE's and try to live a full life, our treatment time could be winding down. Like the NP said without verbalizing there are other treatments after progression but it's all so scary. Something new like a new car or boyfriend is cool but new cancer treatment is...... It all keeps me up at night sometimes. So kudos to your NP I like her.
Tanya
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I am cross-posting here from another thread: Alpelisib trials are no longer recruiting, so we may get FDA approval of Alpelisib in the near future. This is a drug for PI3K-mutant cancers, which commonly pop up during progression on Ibrance-Femara. So Alpelisib-Faslodex is one option. However, Ibrance may still work on these cancers, and even if the cancer has become resistant to Ibrance, Inhibiting PI3K with Alpelisib can make the cancers regain sensitivity to Ibrance. So, perhaps a good secondline would be to keep Ibrance, switching Femara for Faslodex, and add Alpelisib (if the new biopsy shows a PI3K mutation). Some 3-way combo trials are out there, not sure when they will mature. Alpelisib is NOT easy and they are losing a lot of patients right up front who cannot tolerate it (high blood sugar and rashes), but maybe they will find a lower dose can be used or some other way to tolerate it..
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Candy-Glad you are going in. Let us know how it goes.
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Cure-ious, I think it's only the Solar trial that is closed. The BYLIEVE trial which is the one I'm on is still recruiting, it was only opened earlier this year. Susan may be on that one too, as she's only been on it since August I think.
cheers, dee
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Ladies, I took my last Ibrance pill on Friday. It served me well for twenty months. Especially for lung and chest mets, liver not so much. Ill find out today what TX my MO wants me to start, probably Afinitor. UGH
But I won't leave this thread, I'll pop back in to check on you. Thanks for all your help for almost two years. 💞
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Just an update from my office visit this morning. My MO is ordering an MRI of the cervical and thoracic spine. She mentioned my history of rheumatoid arthritis as well as the bone mets documented in the cervical and thoracic spine. She said it does sound like compression on a nerve, whether it is from the RA or cancer. She told me to continue the Ultram pain med use and added a muscle relaxant. And to use a heating pad. The kicker is the receptionist said we have to have approval from the insurance to order the MRI and they are allotted up to 2 weeks to give approval. They will call me when they get the ok to schedule the MRI.
I get frustrated sometimes. I have not had a good nights sleep in almost a week from this neck thing. Last night I paced the bedroom when the pain was at its worst. My MO is WONDERFUL, but I wonder if I convey what I am feeling very well. Our visits just seem so clinical--scans, labs, etc. No real talk on how I am taking all this emotionally. I had an appointment with her for the 'routine' visit at the beginning of Jan. This appointment was unplanned. At the end of today's appt she said to cancel the Jan appt since I came in early ( today). Is there just not much they can do for us MBCers and so we are not regarded or prioritized highly? Also, I told a friend I was calling off work for today ( FMLA absence) due to the neck issue and the doc appt. The friend asked if I was going to work after the seeing the doc since it was at 9 am. Sorry, but I think it is ok to miss a day of work--not sleeping well, in pain, and (not to pull the cancer card but...) duh I have cancer!! Talking about priorities, work is not very high on my list right now.
Sorry for the long post.
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Grannax-
Don't leave us. Keep posting here. We want to hear from you.
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Hello everyone and happy holidays,
I have been on 125mg of ibrance and 2.5 mg femara for the last 3 years. I am grateful for the time I have had. However, as I sit here exhausted, bra on inside out, wondering if it would be ok to use the dogs brush to brush my own hair, I have to ask myself should I ask the mo to lower my dose or give me a f-ing break. I'm tired ladies. I have no energy. I'm existing not living. I welcome all feedback. HELP!
MELISSA
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Melissa, I switched to 100 Ibrance early on. I am now approaching 24 months. You deserve better quality of life. Please talk to your MO to maybe lower the dose and to make sure nothing else is causing your extreme fatigue.
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Grannax2..I will be following you on whatever thread you end up posting on! You are my role model.
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also, I had a dream my husband took me to my mo appointment and they said there was nothing they could do for me anymore. Next scene my husband is driving me to the funeral home for cremation. AND I WAS OK WITH IT!
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candy-678, I hear you about wondering if they do all they can for stage iv. Not necessarily treatments, but QOL. I really like my MO but now and then it seems he doesn't want to hear it...whatever "it" is that day. I hope you can get some relief!
Lissalou, I hear you about the Ibrance fatigue. It's so frustrating. Hopefully your doctor will work with you and reduce the dose. I'm on 125 too but I've read several who have been on lower doses with good results! Last time I asked my MO, he said he wasn't going to change it. I'll ask again. All that said, I am so grateful for this medicine like you said.
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thanks to those who replied. Went in for an Ortho appt for my shoulder. B/P. 185/117. Off to the er. Bloodwork, EKG, chest xray all normal. MO is giving me a month off I/F. Don't know if it's the smartest decision but best for me right now. Wishing each of you the very best!
Melissa
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Melissa, yikes, sounds like your body made your decision for you. After weeks of feeling crap and bad labs, I took a 3 week break from 125mg Ibrance, but stayed on letrozole. From there I went on 100mg Ibrance. I can't say I immediately felt better, but slowly over time I regained some energy. I'm hoping you get some relief. And reversible bras!
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Hello everyone! It's been awhile since I have had the time to check in with all of you and see how all of you are doing. To say things with me have been crazy lately is an understatement. On November 14th I had a port placed since I am a hard stick and I figured it would be better than having to be stuck several times every time I had to have my blood drawn or needed an IV. Well unfortunately I developed MRSA in my incision site and had to have it removed as well as spend 2 nights in the hospital receiving IV antibiotics. I got out of the hospital on Friday December 7th and I have been getting IV antibiotics once a day since then. I will be done finally on this Thursday thank heavens. On the day that I was admitted to the hospital I had my first ever Faslodex injection. For those of you familiar with it, you get 2 injections, one in each 'cheek'. Well unfortunately for me, the nurse that did the injection on my left side mistakenly injected the Falslodex directly into my sciatic nerve (at least that is what my MO and I are thinking) and I felt the WHOLE thing and over the next 36 hours developed the WORST pain in my left hip area that I have ever felt in my entire life. I have given birth naturally 5 times over and I would have taken even that pain over this in a heartbeat. What was even worse is that since I wasn't in the hospital because of the pain, no one would take me seriously until I was sobbing and couldn't take it anymore which was midnight on Thursday night. I even had to call my Oncologist myself and inform them that I had been admitted and that I was in pain. Sad since they were the ones that had referred me to Infectious Disease in the first place due to the infected port. Finally after trying 3 different types of pain medication, they gave me a shot of Dilaudid and it gave me some definite relief and brought the pain down to a tolerable level. It was a NIGHTMARE and needless to say I was seriously starting to doubt that I was ever going to have any kind of decent luck with all of this cancer business at all. Last week on Tuesday I had my first set of scans since starting treatment for all of this and as much as I tried not to be anxious about what they were going to show I was a wreck. On Friday my husband and I got the results and THANK HEAVENS, finally a silver lining on this storm cloud that had been hovering. My bone mets are showing great signs of healing and are becoming more sclerotic which I have been told is wonderful as it means that the Ibrance is doing its job!! I do have some sub-centimeter lesions in both kidneys but it stated in the report that they are too small for accurate characterization. Since my MO never mentioned it I am just assuming that no news means things are good. I am very excited for this news, however I also am keeping my guard up as well because of the fact that this disease is so unpredictable. I am just hoping I don't start doing well and then have things take a turn out of the blue and start going downhill. On Thursday this week I have my annual colonoscopy since I carry the gene for Lynch Syndrome. I have had colonoscopies every year since 2012 which is when I found out that I had inherited the bad gene from my mom. I cannot tell you how thankful I am that I ended up finding that out because I also had a total hysterectomy as well and from what my MO has told me, it was probably one of the smartest things I could have done because if I hadn't, I would probably have had metastasis to that area as well and not just my bones. But anyways, on Wed this week, I start back on Ibrance, Xgeva, and get my next Faslodex injection (which hopefully will go ALOT better this time). I have another appt next month with my MO and if things are going well at that time, we get to start spacing out appointments which I am really looking forward to. It will be nice to just get back to a somewhat normal routine and not have to run to appointments all of the time. That is what I want more than anything is just somewhat of a sense of normalcy like I had before all of this bad news business.
I would just like to say one more time how much I greatly appreciate all of you who are here walking this same journey for all of your wisdom, courage, advice, and love!!! I honestly love reading about all of you and hearing your stories, the good, the bad, and the ugly sides as well. I hope you all have a very MERRY CHRISTMAS as well as a HAPPY 2019. Every day and year that we are here is a definite celebration.
Much love to you all,
Crystle
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snooky1954,
I never know what to make of stories like this. I’m suspicious that no major news organizations have picked up this incredible story. But I usually wait to read the words of Cure-ious
Anyone experience burning sensations along their sides? Seemingly not in the digestive system or the muscles. Mom does have bone mets in her ribs, and I read a blog post about a woman who experienced similar symptoms while her bone mets healed. Could anyone tell me if there’s anything to that?0 -
I just wanted to hop in and say that I'm thinking of all of you, and hoping for better days for those having problems. After reading about uncaring oncologists (one has to wonder how anyone would go into such a field and NOT be sympathetic, but perhaps they burnout?), I'm sending mine a Christmas card, thanking her for her support.
Quick background - I started out with the most uncaring onc ever (he never mentioned Ibrance even though he told me I was ERPR+/HER2-, and told me I was incurable), then went to Sloan Kettering here in NJ for a second opinion at the urging of my primary doc. My current oncologist is the most caring doctor I've ever met, and we spend quite a bit of time at each appointment talking about how life is treating me, and not just how we're treating my cancer. She never leaves the room until she's satisfied I have no more questions or concerns, and she never fails to chat with my husband and ask about my kids.
Onward - someone mentioned removing the primary tumor vs leaving it. I had mine removed by the surgeon doing the biopsy after my mammogram that showed suspicious black patches (we had agreed to that beforehand), before I had even gone to see any oncologist. My current onc was disappointed for me when she saw that, saying it was unnecessary surgery, but I was glad it was gone! One less thing to obsess about, for me.
As far as dosages, I was started on 100mg, and am starting Cycle 19 today.
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Crazeejane-
Wow !! You have had a time of it. Hopefully things are on the upswing and things get back to 'normal' for you. Hoping you can enjoy your Holiday with loved ones and feel good.
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Granax. Just dropping by to say that I’m off Ibrance exactly one year. I hope you continue to have a response to your next treatment. I’m on letrozole and Herceptin. I just stopped Tykerb. QOL.
A note about Faslodex. I had almost 8 months. As luck would have it the next to last was painful. Cold and a new nervous nurse. I started having some back pain. Long story short by this Sept I couldn’t walk more than 100 feet when I would be intense pain and have to sit. Lots of tests. No cancer there. Arthritis. Did therapy for 6 weeks. Finally had a. Epidural and ended up on prednisone for 4 weeks due to pneumonia. I now can walk and do almost everything at a slower pace but with minor pain. No one thinks it was the shot that startedit but I do. Yes I have arthritis but Ive had it for 20 years. I finally got them to listen to me when I described the pain as “ worse than transition during your first labor”. Fortunately my onc and ortho are both womam so they heard me.
Take care all. I’m going to a memorial today for all those in my support group. People ask me how can I go to such a group. Isn’t it depressing? Far from it. I’ve learned how to live and laugh with these wonderful people. Like BC.org my group is a blessing to me. So Thank you all. Maire0 -
maire You are HER 2+? I'm wondering why you were on Ibrance since its usually for HER 2-.
My new plan is to get a liver BX this week. My PET revealed progression in lung, chest and liver. I was surprised by that news. Then on December 31 I will start AA unless the pathology show different receptors. Here I go again.💞
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Well crap Grannax2. My hope is that the PET scan is showing inflammation...You have certainly been dealing with confusing scan readings for 4 months. You poor thing. Geez.
Wouldn't it be something if you have mutated to HER+?
As far as AA, my MO said she has had good success on this combo for her patients. When I progress, I will go to Faslodex, then finish out the antihormonals with AA.
You will be our champion AA user! Don't despair. You have us to lean on.
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lissalou and Muddling, I have been on 75 mg for almost three years. I have had good results. Why not just ask for a lower dose? Be a little more assertive with your MO's. Ask them if they can give you a reference that shows higher doses have better results. I have looked and looked and I have not found any. The people in the trials that dropped down in dose were left in the trials that showed how effective Ibrance is. I have seen no data showing that the higher doses work better. I HAVE seen data that shows that the lower doses work as well. And lissalou, I have taken five months off at various times during my almost three years on I/F. Nothing bad happened. That is why I have extra bottles of Ibrance sitting on a shelf waiting for my funding to run out. Which it did in November. I used a few out of one of the extra bottles waiting for my new funding to come through which just happened. The foundations have less money now because the drug companies and some foundations were hassled by a government agency accusing them of some funny business. In October, one foundation (PAF) only had funds for a few hours before it was gone. Last week, PAN had money for about 24 hours before it was gone. I could explain all this but no one wants to hear it. I've tried. Assistance is still available from Pfizer but it is harder to get.
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Grannax I was on Ibrance because the Mets were not large enough or too close to spinal cord to biopsy. I think mo thought it might have evolved from last biopsy 12 years ago. Right now I. Not exactly sure. It must be HER because it’s stable since I went on that. Also heart issues with Herceptin. I hope you find the next treatment works for you.
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Grannax this just sucks!! I hope that the new scans show that it is not progression only inflammation. You have been in limbo since September.
Crazeejane- I had the same thing happen to me just a couple of months ago. When the nurse went to withdraw the needle it felt like she was pushing further in then for 3-4 days my right leg hurt soooooo bad; right where the sciatic nerve runs. When I mentioned it to the doctor and nurse they said that I probably swelled near the nerve because there is no way that she could have hit the nerve (bull!!!!!)
Ciaci- still living life to it's fullest I see:) Congratulations on the 19th dose! Have you ever been nead ( I can't remember)?
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holmes13, my first scan (6 months after starting Ibrance) showed "no unusual activity" and very little uptake (the one bone met on my spine was gone as well), and the scan I had in July showed "No disease identified" and no FDG uptake at all - Yay! I go for my next PET scan in January... I'm assuming it's going to be the same!!
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jaycee49, I am interested. I appreciate all your posts regarding funding. Nothing has come through for me yet. MO office did call to say they have a sample for me for January. One month at a time.
Thanks again for all your great info.
Suzy.
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