Hello All. I have not posted in a long time but I wanted to share an update. I was using I/L for almost three years but after a biopsy it was discovered that I have the PIK3 mutation so I will be switching to piqray and faslodex. What I really want others to know is the importance of second opinions. After scans in February the local oncologist recommended a biopsy to the outer lung, the results did not indicate cancer cells and as no progression was documented they recommended I stay on I/L. I also requested the scan and biopsy results be sent to another cancer Institute where I occasionally go for a second opinion. A few months went by and I had no appointments until June due to Covid but I was getting nervous so I made a call to the out of town Cancer Institute for some reassurance and to ask some questions. I just happened to ask what the oncologist there thought of the scans and biopsy (figured it would be fine as it was months ago) but I was told they had not gotten the scans, grr! So I requested the scans be sent and within a few days the oncologist called me and he had reviewed the scans with the pulmonologist, radiologist, and other members of their tumor board and determined I needed a bronchoscopy (a little camera into your lungs) to really see what was going on and to do a biopsy in the lung. They did not say it but I could tell they thought the biopsy on the outside of the lung was useless. Anyhow the new biopsy did indicate that I have the PIK 3 mutation and so I need to switch treatment. Had the scans been sent months ago I would have already changed treatment. Sorry this is a long story but what I really want to impress on others is the importance of second opinions, if I had not reached out to the other oncologist they would have kept me on I/L when I really needed to change treatment. I am currently getting some radiation to the lungs to hopefully open this airway and when done with the radiation I will start piqray. Scared to try to but I think it is the right treatment choice. Don’t be hesitant to get second opinions!

Tina2, I just started Ibrance on June 10. I saw my MO that day and asked her the same question. She said she would repeat the scans after 3-4 months on Ibrance. She wanted to give it a chance to "do its work" because if she repeated them sooner, the results could be unreliable. I forget how she worded it, but it made sense when she said it.

One interesting thing is my CBC on the day before I started the Ibrance showed that my white cell count was low. It's never been low before, and I've been tracking my blood counts ever since my first diagnosis in 2007. Weird... I'll have a CBC on the 24th to check my counts.

By the way, does anyone know of a way to add "Ibrance" to the spell checker here? It always gets underlined in red when I'm typing. It doesn't do that in the actual post - just my draft. Not a big deal, but just wondering.

Happy Monday, everyone!

Jack5ie-- funny thing is the side the next day did not have and off taste of smell. It was just that one tablet.

KatyK- Thank you for sharing your story. I have not had progression yet, but I do plan to seek out a second opinion when it happens. I hope all goes well for you with the new treatment plan. Post here and keep us informed of how you are doing.

RK2020- I have been on the usual 3 weeks on, 1 off since the beginning. But my MO is concerned about my ANC count and I am thinking a change in schedule my be on my horizon. I have heard of others on here (cannot remember names) that do 2 on 2 off. Why not the 3 weeks on, but 2 off instead of 1??? I am wondering if that is an option for me.

My MO said the same. I’m sure someone here knows why. I don’t know, did as he said.

mac5 - I’m on Fulvestrant and Ibrance. I started Fulvestrant immediately but held off on the Ibrance until after surgery on my femur. Post surgery, I needed one dose of palliative radiation. My radiation was scheduled on my off week. It’s my understanding that the theoretical concern is that the cdk 4/6 inhibitor will make radiation less effective, as has been shown in some preclinical models. While there is no clinical data yet confirming this, I think doctors generally held cdk 4/6 inhibitors.

It's Karen from Scotland who is on 2 weeks on/2 weeks off. 75 mg I believe. I'll search for her but there are a bunch of other letters in her name. Oh, I have a PM from her, I think. I'll go look. And if the NHS approved it, there is a study somewhere. She doesn't hang around here that much. Just checks in periodically.

Hello everyone

Took a break in posts and then took me a little time to catch up in reading what everyone else has posted. I do agree with the importance of a second opinion In retrospect if I had changed medical oncologists earlier, I may have very well had more time. Now I need to get a second opinion on my second opinion. I do want to wait until I my third cycle of Ibrance and the corresponding scan. Just took my 11th pill in the first cycle. So far so good. A little stomach upset, some fatigue, and sometimes my mouth feels really weird. Typically if I gargle with baking soda and water it brings it back to baseline but I can’t go without brushing immediately following eating. Good thing I’m not super hungry. I’ve lost some weight, which isn’t too concerning since I have some to spare. I haven’t noticed as much of a taste of the pills themselves, but I do feel that it’s changed my sense of taste a bit. Again it’s some thing I can live with. Nothing like the horrible metallic taste when I was getting Chemo.

Other than that nothing major. I do get my first labs since I began-labs drawn on Wednesday. So fingers crossed. My labs before I started the Ibrance to quote the MO nurse “perfect”. we will see.
I did get some good news however. I’ve been experiencing dizziness on and off for a while. It has gotten worse in the last month or so. So they did an MRI of my brain to see if there were Mets there. Thank goodness there was nothing. So happy. Small victory I know but I’ll take it where I can get it.

Has anyone else had dizziness as a side effect?

I Feel you sunshine 99. Every time I say Ibrance I get Quite the variation on the spelling. Sometimes it’s Iran, sometimes it its eyebrows, I Brandts etc. etc. and so on and so forth. I find it slightly amusing.

It’s hard not to feel frustrated sometimes. I feel like my oncology team is doing their best to be empathetic, but it’s kind of a cookie-cutter relationship. I do need to give them the benefit of the doubt as my previous team was Pretty bad. I should’ve switched earlier but I wanted to finish the chemo before I changed oncologist. In retrospect… Oh well if wishes were horses beggars would ride. I need to trust myself, but this is overwhelming sometimes. Thank you for the respite ladies. Always feel better after I post.

Thanks Jaycee and Tanya for the comments about tweeking Ibrance schedule. I will PM Karen. I don't know if my MO will want to change the schedule, but I am getting information. I do not want to do Zarxio again--- see previous posts from me about that. If I can discuss changing Ibrance schedule to let counts rebound and still be on the med, maybe that is the way to go. I don't want to stop Ibrance as it is working on the cancer.

candy-678 - Sorry for the confusion but I did not read a study on 2/2 schedule rather a small portion of patients in trial were moved to 2/2.
https://www.tga.gov.au/sites/default/files/auspar-palbociclib-180430-cer.pdf
See pages 162 & 163 were there is reference to 2/2. “The change to a different schedule (2 weeks on/2 weeks off) was not described in the Protocol and the benefits of this dose in the 3.8% who switched to this regimen cannot be assured“

M-and-M37 I had dizziness on 125 mg dosage among a host of other SE (mouth sores, fatigue, loss of appetite, hair thinning and I lost two toenails). The dizziness was bad enough that it interfered with my physical therapy. My ANC dropped below 1000 and it took 14 days to recover. When I moved to 100 mg, the dizziness went away.

I’ve been on a 2/2 schedule at 75 mg for at least 3.5 years. SEs are mild. Counts stay low but I haven’t had to stop.

I’m on cycle 56 tight now and NEAD.

RK2020----- Thank you. I saved the link for reference.

Iwrite--- Great to know. You are bone only, right? I have liver mets too. Wonder if that changes things? I am on cycle 30 of 75mg--3 on/1off. Just wondering if I would need to change schedule.

Jensgotthis--- Glad you came away positive. I will rewatch the session when available--- Friday? I do think CDK 4/6 inhibitors are the game changer. If we didn't have Ibrance, wow, we would be in bad shape. There is a lot of talk about immunotherapy. My MO said once, that would not be an option for me since I have autoimmune disorders. But, I can always get a second opinion about that. And I do hope my MO will be open to being creative later on. She just doesn't seem to be the type.

Hi KBL - I had an endoscopy (EUS) on May 29th and was on Ibrance. I also needed a covid test prior to this. They knew I was on Ibrance and it didn't seem like a concern for them. I was on week 2 of my Ibrance cycle but they didn't ask me about what day of the cycle I was. Mine turned out fine and everything looked good! Hoping yours is the same:)

KBL, I was just about to answer your PM. Sorry I took so long. I did not stop Ibrance or even ask. Here's my reasoning. If Ibrance is causing something GI-related, I want the GI guy to see it. Does that make sense? I also stopped taking Prilosec for five days before for the same reason. I have pretty bad gastritis and Prilosec is now causing more problems. I spent the morning on the phone making appointments and having the upper endoscopy results sent to to my MO and my palliative care doctor. These GI issues are worse right now than cancer. Yes, I said that. I don't think our ANC recovers that much anyway. I could have taken an extra week off and the timing would have been prefect but I didn't. I want to see what is going on. Pain from gastritis and almost the same pain if I take too much Prilosec. Sound familiar to anyone? It took me at least a year to figure out the too much Prilosec thing.

There is a trial for alternative dosing of ibrance, being 5 days on 2 days off that started in 2017. The goal is to see whether the more frequent breaks from the ibrance improve side effects. I haven't been able to find any results yet. I know someone who tried it on her own for over a year. She didn't notice any difference in her blood test results.