Ibrance (Palbociclib)
Comments
-
KBL - why do some things not show up on scans? I have/had the same question. PET scan in Sept 2019 showed the ugly tumor in R-axilla. It has shrunk since then according to a CT end of January 2020 from 2.3 to 1.1, hooray!!. BUT the CT picked up something in the lower bowel not seen in the PET. Oncologist was concerned, rapid growth? Hiding? A DR I saw in 2011, said that those suspicious lumps were in a CT done in 2011, and had not grown, but one had changed and was starting to block. So I had them removed in February. Good news, not cancerous. He explained that the PET picks up activity. They give you a big dose of glocose prior, which cancer responds to - activity. So a PET might not "see" /detect something that a CT does. Or at least that is my understanding.
Ibrance and Arimidex. Supplements include Mg, D, biotin, C, Turmeric(Curcumin), Gluchosamine-Chondroitin,BoneUp(multi with Coligen),Thorne (another multi), Melatonine(at night).
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. . Could have been swelling earlier but wearing long sleeves. Ultra sounds for clots, Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
8/2019 CT, Breast/chest , neck/thyroid ultra sound
9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)
9/29/2019 PET scan, no indication of spread. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct.
2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology. 2/25/2020 – Pathology. Not cancerous. Hooray
0 -
Hi, BlueGirlRedState. So glad they weren't cancerous. Scans are just plain weird. I see you've been on this roller coaster since 2009. I hope things keep shrinking for you.
0 -
Thanks Bev Jen appreciate your info and also sympathise with the waiting. I do have bloods taken every 5 weeks too, but they only check for low counts so that I can start a new cycle of Ibrance. On 5 weeks we’ve settled and they have always so far been fine and made it above the 1.0 threshold. On 4 weeks I was as low as 0.6! However we don’t have a patient portal...it’s always an appointment with the nurse practitioner. I’m happy with that and would prefer the 10min chat through all the other SEs than reading on a portal I think. I agree with Candy too that the stress of all those TM etc tests must take their toll.
My thinking is if I see one of my team every 5 weeks I can build a relationship with them .... they know how I am normally and when I’m not right and that’s what’s happened. We laugh and sometimes I get a wee gentle ticking off for being a bit too worried about myself....in the best possible way....I know I’m doing fine so far and they’ve told me they’ll be right on it if there’s a problem and I believe them. The thinking is go and enjoy your life! We’ll tell you when you need to start thinking about terminal. I think that’s a pretty good approach!
0 -
I am treated in the UK, like Karenfizedbo1; blood tests monthly , 2 days before Faslodex injection to check levels. On the day of the injection I see a breast care nurse, usually the same brilliant one, but the whole team are lovely. She checks my weight, temperature, blood pressure and a questions me about about SE's and how I have been in the previous month. If the results are favourable, I have a quick chat with the oncology pharmacist who gives my 21 days of Ibrance and any other meds I need. The breast cancer care nurse then gives me my injections. It takes about 2 hours.
While I am feeling 'well' I see my oncologist 6 monthly, after a scan (usually CT). Recently, I had an MRI scan at 5 months as I had been having back pain.The nurse discussed this with oncologist, who suggested the early MRI. (stable for now, yippee!). Having MBC is ******** awful, [but scan time is the worst]. I am pleased I get results from a person so I get my worries/questions dealt with. I trust the whole team, we know each other well now and they will be honest with me when difficult times come.
0 -
Common therapies post Palbo progression at Siteman Cancer Center, from the study: "Retrospective Analysis of Treatment Patterns and Effectiveness of Palbociclib and Subsequent Regimens in Metastatic Breast Cancer":
Exemestane/Everolimus struck me as interesting. However, I was unable to find studies backing the use of this combo after Palbo. Is anyone familiar with studies that could possibly justify this combination? Would really appreciate any leads, as I would probably need to appeal to the Supreme Court in my country in order to receive treatment (already had to appeal for Ibrance last year).Also, I find it interesting that a number of patients return to AIs. Perhaps they were using Palbo solo? Unfortunately the study doesn't distinguish between Palbo and Palbo/Fulv patients.
0 -
FYI, I just received a personal email from Pfizer...Since I am ordering my next cycle today, we will see what happens! There is more to the email and it says it will come in and must be stored in the blister pack. Note how it says it is switching...so apparently there is no choice.
IBRANCE is switching from capsules to tablets. There is no change to the active ingredient (palbociclib) in IBRANCE or to the dosage strengths available (125 mg, 100 mg, 75 mg). Please note that the new smooth-coated tablet may be taken with or without food for your convenience.
No action is needed on your part——you will continue to receive your prescribed IBRANCE in the same way that you are used to.
0 -
This sounds quite hopeful!
GMI-1359 is an investigational therapy being developed by GlycoMimetics as a potential treatment for cancers that involve the bone marrow — including acute myeloid leukemia (AML) andmyeloma — rare pediatric cancers such as osteosarcoma, and other solid tumors that spread to bones, such as prostate cancer and breast cancer.
The U.S. Patent and Trademark Officehas issued a patent for GMI-1359, which will protect the composition of this innovative treatment as well as its pharmaceutical formulations through to 2035.
How does GMI-1359 work?
GMI-1359 is designed to target and block E-selectin and CXCR4simultaneously. Both E-selectin and CXCR4 are adhesion molecules — molecules that promote interaction between cells — that play important roles in metastasis, or the spread of cancer cells from one site to another.
In the case of breast cancer, the disease can return even after complete treatment. That indicates that there may be cancer cells that hide and remain dormant in the body. A preclinical study by researchers in the U.S. showed that these dormant cells hide within protective sites, including the bone marrow, aided by the simultaneous action of E-selectin and CXCR4.
E-selectin allows the migration and entry of breast cancer cells into the bone marrow. Meanwhile CXCR4 plays a key role in anchoring those cancer cells within that marrow.
Thus, the simultaneous inhibition of E-selectin and CXCR4 by GMI-1359 can potentially prevent breast cancer metastasis as well as remove already disseminated breast cancer cells.
In addition, preclinical studies have shown that GMI-1359 could enhance efficacy in the treatment of prostate cancer, breast cancer, AML, myeloma, and osteosarcoma.
GMI-1359 in clinical trials
The safety and pharmacokinetics (movement in the body) of GMI-1359 has been evaluated in a Phase 1, randomized, double-blind, placebo-controlled, single ascending dose trial (NCT02931214). That study, in Nebraska, enrolled some 60 healthy volunteers, ages 19-60. GlycoMimetics reported that GMI-1359 was safe to administer and its pharmacokinetic parameters were well suited to administration in an acute care setting.
An open-label, dose-escalating Phase 1 clinical trial (NCT04197999) now is recruiting participants with advanced breast cancer in North Carolina. This trial will test the safety, tolerability, pharmacokinetics, and pharmacodynamics (effect on the body) of GMI-1359. Up to 12 patientswith metastatic hormone receptor-positive breast cancer will be recruited. The results from the study, which are expected in late 2020, will be used to guide the future development of GMI-1359.
0 -
Karen and denny - - do they only check for low counts or do they also do tumor marker tests and just not tell us as its on a need to know sort of a thing? At my January visit the MO noted that they forgot to run some sort of count for my liver but he wasn't worried as 'your numbers have never been out of line'. This last time I saw the BCN because it was that or wait 2 hours for the MO - I adore my BCN as she is all about getting you in and out of the monthly stuff as fast as possible if you are feeling well. But still... given the volume of people I wonder if a portal wouldn't be helpful as an 'extra set of eyes' although admittedly that would probably just generate MORE worried appointments than less.
The worst was getting those damn letters in the post during diagnostics. That was a special kind of torture.
0 -
SondraF, I get TMs done each month, but I don't ask, ''ignorance is bliss'' as far as I am concerned. I know the Oncologist and breast cancer nurse watch them.
0 -
IntoLight...I just ordered my Ibrance today. I'm still getting the capsules.
0 -
Mmmnnn Sondra and Denny I’ll ask at my next appointment if they are checking TMs and not telling us!
0 -
Jen,
Thanks for the post. That sounds promising. If I'm reading this correctly phase 1 would end sometime this year. Let's hope that works.
0 -
Nurse called today that my scans show 'clinical improvement'. She was reading the email from the MO. I figured things were working but a bit more information would be nice, like just boob improvement? Mets improvement? What sort of scale are we talking about here? A lot? A little? More would be nice or I'm responding really well?
Also no chance to ask MO about the left side. I did tell the nurse that when I saw her last week but he won't do another whole spine mri at this time. Which is fine as I think I need a specialist on this and I think the radiologists are just looking at/for mets or its not the right imaging to seenwhat is going on.
Should be getting that second opinion soon, so perhaps from there can see what is up.
0 -
Congrats on the "clinical improvement" Sondra F (whatever the heck that REALLY means).
Afraid we got some bad news here. After starting Ibrance in June and seeing improvement in all nodules in September, last week's scan for my wife showed: "MULTIPLE, SOLID NODULES SUSPICIOUS FOR METASTATIC DISEASE ARE MILDLY LARGER......" They then listed a dozen or so nodules that had all had increased in size. This was also after she was reduced down to 75mg in January. We got this off of the radiological report not from her MO. It'll be interesting to see what her MO's recommendation is in response to this.
0 -
Oh, BLMike, so sorry to hear this. I guess the silver lining here is "mildly larger." Hopefully your MO will shed some light on the language and what this really means as far as your wife's treatment is concerned. I see that she's on letrozole -- perhaps one possibility would be to switch her to faslodex (the shots) instead and stay on Ibrance? Just a thought.
0 -
Faslodex shots are a good thought BevJen. Thanks. Her MO has mentioned that before so we'll add that to our list of questions.
0 -
Mike, I'm sorry you and your wife had to get this news and I'm not a doctor but I wonder if boosting back up to the higher dose of Ibrance might be an option. What I really want to say is in my twenty years of directing the Flying Colors cancer support center I saw many people survive MBC long before Ibrance or any of these pills/capsules were invented. Some of my friends are decades out!
After some progression following 3 years of dancing with Ibrance I chose to try newly approved Lynparza because of my BRCA1 mutation. It wasn't the drug for me and we'll decide next week where I'll dance next. My oncologist wants me to tamp things down with Halaven (IV chemo) and then perhaps revisit Ibrance. I'm praying about what I'll be willing to do and will be praying about your wife's choices too. (I love that God already knows.)
Sondra, I think any time someone uses the word "improvement" for one of us it's time to celebrate so that's what I'm doing for you!! Woohoo!
This week I'm dancing in a mask clamped to a table (see photo) as we get rid of a tiny spot on my skull with CyberKnife. The radiation oncologist says we don't even know that it's cancer but the treatment is the same for benign growths that close to the brain. I have one 45 minute treatment under my belt (so to speak) with Wednesday and Friday to go. Here's to CyberNose! Kindly overlook the bald head....neither my wig nor a cap would fit in that contraption!
0 -
Pat,
Good to hear from you. Best wishes for successful radiation treatment to get rid of your spot. Joining my prayers with yours to help you in making the decision for your next treatment.
0 -
Wow Pat.... Love that you’re willing to share and none of us care about your baldy heid. And you look good anyway.We do however care about you! Hope they got the lot.
0 -
Pat -- Thanks so much for weighing in. Your words are inspirational. Best of luck with your continued CyberKnife procedures and with your next treatment (whatever that is).
0 -
Sondra, congrats on your improved report.
BLMike, sorry to hear about your wife's bad news. I have always wondered if they would move people back to the higher dose after progression. Please let us know what the MO says.
Pat, good to hear from you. Love the nose!
0 -
MLMike
I’m also so sorry for the recent news
As BevJen mentioned, it may be that it’s a mild increase and perhaps Faslodex can reverse that finding! I’m sure praying that it will! !
Pat, you are hilarious! I’m sure God is so pleased with how well you are using your gift of humor to minister to so many.
Love ya, sister
0 -
BLMike, so sorry to hear about your wife's progression. I know how hard you have worked with her. Sending prayers for the right decisions for the future.
Sondra, any good news, even a little, is good news. Smiling!
Pat, God certainly knows our pathway--where we have been, where we are, and where we are going. I will continue my prayers for good results. I never thought I suffered from claustrophobia, but the thought of that for 45 minutes makes me nervous. I would need some help! You are my brave, strong friend!
0 -
Checking in!
Sondra, I'm going to take "clinical improvement" as good news!
Pat, I love the nose! I am claustrophobic, thank you Ativan for scans. I have spent over an hr in an MRI for spinal imaging before, having a mask like that over my face for 45 mins tho, wow, you are brave!
Mike, I'm so sorry to hear of your wifes progression. I second the other ladies, wondering if she might be able to stay on the Ibrance by switching out the AI for Faslodex, that's where my MO will go for me with progression to stay with Ibrance. Thinking of you and your wife.
I know my MO follows my TM's monthly and obviously they are up enough to draw worry from her. TM's and scans aren't matching tho, so I'm scratching my head. We are hoping TM's are down when checked again in a couple weeks. I know TM's are reliable for some and not for others. here's hopes for a downward trend in TM's!
Me and my rump shaker are still dancing
0 -
mike - sorry to hear of your wife’s progression. Perhaps a higher dose of ibrance is needed, as you said she just went down to 75mg. Hoping and praying for you two.
BevJen - I am hoping the TM going up is just a fluke. Keep us posted.
Pat - you’re beautiful in that contraption and love the red nose. I am sure you’ll get the best treatment plan. I hope you will do the ibrance dance again in the near future. You are always an inspiration to us all.
Sondra - that is great news! Clinical improvement, I’ll take it!
To everyone else with good scan results, hooray.
I had my scan today. Oncologist called me after 5p and scared the heck out of me - said my scans look good. I thought he was going to give me bad news. I go in for the actual appointment on Thursday. I guess I will continue the Lindy Lynparza still. I have now surpassed the median PFS rate of 7 months!
I enjoy reading about everyone - I tend to lurk more so since I am not on ibrance anymore. But know I share your happiness, worries, and everything in between. Keep on dancing. You are always in my thoughts and prayers at night.
0 -
Thanks all for the thoughts and prayers. My wife's MO called her last night. A couple of weird things. Her MO said she's not even 100% convinced there is progression here. She indicated that when there's increase in size less than 3mm, it's possible that's simply differences in the way the CT scan sliced/diced the nodules. Of course, one of the nodules increased by 4mm and many of them by 3mm, but there were a dozen or so nodules that ALL showed increases. With this CT scan, no progression just doesn't make any sense to me (but I'm not the one who went to Med School). This make sense to anyone else?
Her MO said we can discuss treatment options when we see her on the 18th (and Faslodex is definitely an option), but her instinct is to continue the Ibrance/Letrozole for another two months and do another scan. This doesn't make sense to me either because from June to September we saw improvement in all nodules and now in February we're seeing growth in all nodules (if the CT is accurate). That seems to me to indicate the treatment is no longer working (but I still haven't gone to Med School).
They didn't discuss increasing the Ibrance dose back to 100mg, but we'll ask about that on the 18th.
Holli -- Great news on your scan results. WooHoo!
Thanks again for the comments. This thread is keeping us grounded and not completely freaking out.
0 -
BLMike....wishing you all the best and stay strong.
Pat...prayers and hope that nodule is nothing0 -
BLMike...glad your wife's doctor isn't too concerned, at least not yet. Hopefully you'll get more solid answers at the visit.
Sondra...'clinical improvement'...YAY!
Pat...so glad you can find humor in a scary situation. Your nose is adorable!
0 -
Sondra, I got the same phone call you did after my first scan on I/L. The nurse called while we were at a noisy restaurant and all she said was they showed improvement, no details. It was a definite relief to hear that, but like you I wanted to know more. MyMO doesn’t release results (other than labs) until I’ve seen her. I wish she would. Now that I’ve been through some more scans I am very happy with the word improvement. Enjoy that and breathe easy 😊.
BLMike, Interesting call from the MO. I have no medical training either but she (MO) seems to be compromising with a new scan in 2 months, not long enough to let big changes occur, but not changing treatments either. Makes sense to me to try again in a shorter time frame.
Pat, Thanks for the pic and the update. I hope the skull spot is benign too. I actually thought the red nose was part of the gear you were using. 😁
Holly, Great news!
0 -
Sondra, I got the same phone call you did after my first scan on I/L. The nurse called while we were at a noisy restaurant and all she said was they showed improvement, no details. It was a definite relief to hear that, but like you I wanted to know more. MyMO doesn't release results (other than labs) until I've seen her. I wish she would. Now that I've been through some more scans I am very happy with the word improvement. Enjoy that and breathe easy 😊.
BLMike, Interesting call from the MO. I have no medical training either but she (MO) seems to be compromising with a new scan in 2 months, not long enough to let big changes occur, but not changing treatments either. Makes sense to me to try again in a shorter time frame.
Pat, Thanks for the pic and the update. I hope the skull spot is benign too. I actually thought the red nose was part of the gear you were using. 😁
Holly, Great news!
0
