Ibrance (Palbociclib)
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My phone translated it into English. Wonderfully written. Gorgeous conductor ... um ... photo.
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amarantha, I can’t read a word of French, but the conductor is cute!
Jaycee, how do you use the translation program? I assume you have an iPhone. I know Facebook posting can be translated into different languages, but how do you translate a whole article?
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cling, I have an Android phone. When I clicked the review, there were two buttons at the bottom. One said "English." The other said "French." It worked fine. Just now, I got on my Chromebook. I clicked the review and I got a box in the upper right where I could choose to translate into English. Also worked fine. I use only Android/Linux devices. No Apple or Microsoft products under my roof. None.
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I'm going down the rabbit hole a bit, but bear with me for a second.
I plotted notations from each of my CT scans (Chest, Abdomen, Pelvis) as I've been bothered by the numerous mentions of sclerotic sites (I know sclerotic means healing and is good). At dx, they didn't know I was stage 4 and started chemo before doing a PET. A few weeks into chemo, I had the PET and it showed only one 1 bone site as MBC. I finished the chemo and had a mastectomy, the biopsy of the breast showed a complete response to chemo and 0/12 nodes tested positive.
When I started Ibrance and letrozole, I got baseline CTs done - 8 sites in the bones were noted. I get these every 3 months or so and looking at my chart I have had a growing number of things identifed in reports over time. With the scans I did this week, I now have 13 sites mentioned (some are called tiny or possible bone islands so may not be mets) as well as an exophytic peri-centimeter lesion in the liver and two low density renal lesions too small to characterize. My MO doesn't think the liver or kidney lesions are cancer related.
The reader of the scans is not consistent across test dates so I'm sure that accounts for some variation. I've also heard that CTs are not preferred to monitor bone mets. My bone scans all look great, initially showing just the one site that the PET also showed and now showing NEAD.
With all of this on the table, it makes me wonder if Ibrance is starting to fail for me or if I just need to take a step back and not worry at all about the CTs except for keeping an eye on organ involvement.
Argh! I hate cancer. What do you think though?
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JoynerL, some have said that they can’t take aspirin because of their platelets, or something. I also take a baby aspirin daily and my MO has never said a word about it. But was wondering about ibuprofen
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Hey everyone!
Sorry been kind of crazy here. Trying to get a better schedule but life and we got snow/ice in my area of TN so been looking at that and going outside bundled up. I want to welcome to all the new ladies in here I am a newbie myself. I go wed for my monthly checkup and see if I go on round 4 of this. I also start an infusion (I dunno the meds but I will ask) to help strengthen my bones since the xghevia shot was absolutely killing me in my arm. I couldn't handle it I can handle a lot but nope. I also get to set up my next bone scan next month.
I am 38 I was 34 when I was first diagnosed with stage two and they found bone mets in my back right before my 38th birthday. I hadn't hit my 4 year mark and was a 3 year survivor. I worked most of my life and went to college. I won't get to have a family and honestly that was hard for the longest especially this time around but I think I am turning it around. I realize that if possible we can adopt so it isn't a big issue if not we will just get another dog (we have two). I plan my life better. Right now I also have been dealing with a ton of red tape with my job's long term disability because they (liberty mutual) have a pre existing clause. Will probably be posting that long story in the blowing off steam thread. So been jumping through a million hoops on that. Once this is done I am medically retiring because honestly I cannot handle it mainly with my back, working in retail I just can't anymore. I tire out just doing laundry or picking up the floor. Plus the ibrance I get super tired. I just listened to an older podcast on apple for this site about mbc. People ask her what her job is and she said that this is her job. I agree its a job. I have been working or trying to work on projects. Just wanted to say hello to all the new ladies in here and welcome you. These ladies are fantastic and are super helpful. Will let everyone know how it goes on Wed.
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Joyner and Gracie, My MO told me no ibuprofen so I have not had any since dx in May 2016. I had liver mets if this makes a difference. I have no activity at all now in liver or bones so I guess for me it has been a good call. Don't know if it relates or not, but I won't take any.
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IntoLight, thank you for amswring
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Cchilders- You are doing remarkably well for someone so young! Definitely perservere in your path and get on disability, and focus on every day enjoying life the very best you can! I found that moving into chemo-induced menopause made me emotionally more stable and mentally tougher. Plan to be here a long time, make all those bucket lists and to-do lists, and move forward on your life (doesn't feel like it, but its still your life!) hopefully amazing cancer treatments are coming and you can look back at this as just a twist in the road...
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Also, XGEVA, get the shot in the stomach, its a piece of cake- is your oncologist a breast cancer specialist?
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this is probably why my ibrancequit working. I had miraculous results from March - June when I was having trouble eating. Tumors shrunk 2 cm. Then in order to gain weight back had started eating wheat and alternative dr had me on genistein per Greek test showing it would killit. Tumors really started growing in September and really big requiring palliative radiation in December-last Thursday. Oncologist is taking me off Ibrance/letrozole and switching to faslodex/zometa. I’m dreading it. First treatment Friday. He had said we would consider staying on it and changed his mind. I wasn’t happy. Requested a scan again in 3 months to make sure the new treatment was working. I’m cleaning up diet again and find something else to maintain my weight. I’m taking this info to him thenand telling him I want back on! I saw the same research coming out of England as well. Thank y’all for sharing this info!
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I have an Android, too, and clicked the ENGLISH button at the bottom....worked like a charm! Wonderful review, Amarantha, and gorgeous photos and conductor!
Thanks on the aspirin question!
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Oh my, you gals are so wonderful, you are like the girlfriends I always wished I had, whom you can share stuff with and be buoyed up !
I have a friend who is really struggling with her fresh cancer diagnosis, and need for chemo, I wish I new better how to support her
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Amarantha, just be there for her, and send her to us! It is difficult. I deeply miss my best friend who just passed from this awful disease. I wish one of you lived in San Diego. I could use a good friend who lives close so we could just talk and understand each other. I don't want to put this on my DD and my other friends just don't get it. None of the ladies in the local support group are on Ibrance that I have found so they don't get it either. I appreciate this site more than any of you know...
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I love this site !!!!! So much information and I totally agree with amarantha that 'you gals are wonderful '. Interesting that I can talk with women all over the globe that understands what I am going through. We do not have any support groups in my area---I called all over my town and the next town over. You all are my support. Thank you.
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Finished my 3d week of second cycle of I/F today. I almost have no SEs except stopped Ibrance for a week after 2d week of first cycle to wait for neutrophil to recover, and delayed the start of 2d cycle due to a cold. I saw so many of you mentioned repeated UTI here. I felt the UTI coming on Thursday and the preliminary culture did show UTI. I wonder if UTI is a regular occurrence of the Ibrance taker, just not listed as the official SE?
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I've had recurrent UTIs for years and years, since menopause. I had them non-stop on Tamoxifen. (8 months) My opinion is that they are caused by the estrogen suppression drugs (Tamoxifen, AI's, for most of us letrozole) that dry out your urogenital (my new favorite word) area. I used topical estrogen (Vagifem) for years and no UTIs. Then came ER+ cancer. No more estrogen. Now, I attempt to moisturize the area with various products, the best being Luvena (expensive as heck) but it works. I also use boric acid vaginal suppositories to balance PH to avoid yeast from taking antibiotics for UTIs. I just started using a vitamin e suppository that has coconut oil and palm oil. Do I put something in my vagina every night? Just about. I don't think it is a se of Ibrance. It is estrogen suppression. (IMHO)
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Can you all share how long you were on Ibrance before you saw any change in your tumor markers
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They don't even check my tumor markers. They're always low. Not a valid measurement.
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Mine have always been very accurate. I was just wondering, my first MOnappt is tomorrow.
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GracieM, my Ca15.3 was 423 at diagnosis. After 3 months on Adriamycin/cytoxan, it was 92. After 12 months on Ibrance 100/Letrozole, it is now 45. I am considered NEAD for now. My MO uses the following to monitor disease: (1)monthly cbc, chem profiles, (2) ca15:3, (3) how I feel, (4) quarterly CT scans with contrast and bone scans. Hope this info helps.
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Gracie, Tumor markers are of use for some and not for others. My MO does track mine, and they have been accurate, but that could change. He uses the trend of TMs as one indicator of possible changes, but he says that TMs on their own are not a definitive measure of status. Like SandiBeach's MO, mine looks at blood tests (cbc and cmp) how I feel, tumor markers, and scans. That said, my TMs were not checked for the first couple months on Faslodex and Ibrance because it usually takes at least three months to see a response. After three months, my TMs had started to decrease. I also had CT scan at that time. Btw, although my TMs do go down, they have never been in the "normal" range. I would be doing cartwheels (well maybe just jumping up and down) if my ca27.29 went down to a two digit number. Good luck with your appt. let us know how it goes.
Hugs and prayers from, Lynne
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Thanks Lynne and Sandi. My blood work up last week included tm’s so I was just curious if they would show any changes
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Hi Gracie! Ditto what Lynne and sandib said. My TM has never been a good source of info on its own. Mine were perfectly normal when first diagnosed with MBC. Be patient, Ibrance takes a little while to work.
Has anyone else ever had their neutrophils drop even more after Neupogen shot and a week off? I was told that's what my bloodwork this morning said. This has not happened before. I wondered if it happened to anyone else?
Claudia
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I'm so far behind with everything, having been offline for a few weeks that I'm just going to say.....HI, I'M BACK!! and I'll catch up on your news gradually. I've been seeing you on Facebook, Pat, as you know so I'm more or less up to date on your story. More less than more, if that makes sense but I'll catch up.
Love to all
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Finally, finally--my MO and my PCP have communicated. I was getting so frustrated never getting to see my PCP when I got sick (I have another UTI). I always got another Dr because they wanted me in the same day, and I have not seen my PCP since before my original dx May 2016. Yes--I am not exaggerating. This time I emailed her and said I have another UTI, I don't want another Dr who I have to take the time and provide a complete explanation of this "different" cancer treatment, but I don't know what else to do other than change Doctors. Her nurse called me this morning and called in a Rx but told me to go give a urine sample also. Then she called me this afternoon and said my two doctors communicated (what a concept!) and if my symptoms didn't heal by the time I started my next cycle to put it off a week. You all have said this type of thing since I first found this site, but this is the first time I actually heard it from my doctors. Did I mention this is about time!!!
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Another thread was highlighting blood clots as a potential issue, now I'll add UTI's to the list. Janet, your comment about putting something in (or on) your nether regions just about every day hit home. All the ointments, salves, and creams add 10 minutes to my morning routine!
Gracie, my TM's were never reliable and my MO doesn't subscribe to them anyway. But I know many on this site have been able to use them reliably. Good luck at your appointment tomorrow.
Claudia, I don't have experience to share on the neutrophil issue. How do you feel? When my neutrophils are down I feel 'crunchy'. Could it be a lab error?
Great to have you back, Leapfrog. Hope you were shopping and redecorating!
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Hi Jaylea...yep, I have been getting my little home sorted out a bit. Thank goodness for IKEA, but mainly thank goodness for a friend who can turn their flat packs into cupboards!
Re UTI's I haven't had one so far but I put Dalacin V ointment on "that" area every morning after my shower. It makes it more comfortable. I do find that I retain fluid as well but that could be either the Letrozole or Ibrance or both. Yep, just another thing to add to my line up of creams, ointments etc to do post shower!
Re tumour markers, I think I've probably bored everyone silly about mine by now. My oncologist uses it as a guide but we don't take a lot notice of it and we won't unless it goes in a continuous upward trend. It was 900 post BMX and each cycle for several months it found its way down to 390 but then it suddenly shot up to 520 and now it hovers between 450 and 520 every time in a zig zag fashion. I don't bother to ask for it any more. I told my oncologist I'll leave the worrying to him.
I'm having a full body CT next Thursday and a full body bone scan the following Monday. Then we'll know how I'm going.
It's nice to be back amongst you girls. Lots of hugs.
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No measurable TMs here either. Never elevated for me.
Bigbhome: after cycle 2 I had two Grastofil (like neupogen) and then 5 days off. My counts dropped. We now know that in my off week my counts will continue to decline even if I've had 1-2 shots right after completing day 21...so we are planning for more Grastofil injections during the off week.
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plus there is a pretty picture of the conductor. 
