Ibrance (Palbociclib)
Comments
-
Two ideas have crossed my mind. 1. Not attend my next MO appointment on April 8. 2. Take two weeks off instead of one between the three weeks on.
0 -
In Maryland, they are still doing treatments (by treatments, I mean faslodex shots as well as blood tests). I have both scheduled tomorrow. They did a quick pre-screen of me today (do you have fever? do you have a cough? etc.) and then changed my appointment times so that they are close together. My hospital (Hopkins) has a separate cancer building, so I don't have to go into the other areas of the hospital. Oh, and they said -- only you can come in. Anyone else needs to wait in the car. They won't be let in.
As I mentioned previously, by mutual agreement, we put off my nuclear bone scan until who knows when. But I've just had two other scans (CT and MRI) so I'm good for a few months. This just would have been more information.
Take care, all.
0 -
Just had my monthly appointment with MO. I was met at the door, in the hallway, by a nurse. Who took my temp, and asked me to fill out a short questionare. Had I been out of the country, exposed, etc. No to all, then I could go sign in. Visit went well, said he would see me in 2 months instead of 1, and if necessary we could do the visit over the phone.
My PCP shut his office last week.
0 -
Wow! I have 6 areas of bone cancer, so I am hopeful to see progress in 2.5 months when I have my next bone scan. Thank you for sharing!
0 -
Spookiesmom, I had a similar moment at my cancer center. It went something like this:
Employee who took my temperature at the door said: Have you been out of the country in the past 14 days?
Me: No.
Employee: Have you been around anyone who has been out of the country in the past 14 days?
Me: Yes.
Employee: (after loooooonnnnng pause) When were you with that person?
Me: Day before yesterday. (My granddaughter was in that crowd trying to get out of London which included people from Europe being banned from travel to the USA.)
Employee looks around desperately and says: Well, okay, just sign in at the desk (where there was a community pen for signing).
This was last week so, hopefully, they've thought this through a bit!
Love from PatGMc
0 -
Re: Covid-19
We feel pretty sure my husband, daughter, granddaughter and I got the virus after they stayed in a Nashville hotel earlier in the winter. We've never all been sick at the same time and this was something different from and worse than anything we've ever experienced. Unfortunately, we were bad off for a really long time, getting better, then worse. I did stop taking everything during that time.
I was too sick to go in but the rest of the family went to doctors and multiple times to Urgent Care as recently as late February. They tested negative for the flu and Strep but no doctor ever mentioned a coronavirus test....I suppose because they didn't have them!
I'm convinced many more people have had the virus than we'll ever know for this very reason. Many of my friends spoke about being sick like they've never been before with the horrible cough that goes on and on (6 weeks for me.....longer for the girls).
I've heard people who've recovered from the virus have antibodies that could be given to heal others. I'd donate but I'm thinking no one's going to line up for a transfusion from my MBC self! Ya' think?
PatGMcCoronafied
0 -
Pat, I've wondered what they would do if someone said yes, I've had a little cough. I would think that's true of a lot of people who aren't actually sick with Covid 19. I'm constantly tending to my runny nose but I think that's either an I or L side effect?
I came across this breakdown on a tracking sheet (for blood counts) I received from my hospital at my dx. I can't say whether this is widely accepted by the medical community or not. This is under the Absolute Neutrophils Count heading:
Greater than 1,000 —low risk for infection
500-1,000–medium risk for infection
Less than 500–high risk for infection
I had been pretty comfortable all this time thinking I wasn't at a high risk of getting colds etc from others since I've never been below 500. However, I do have quite a few months coming in below 1,000 and have to wait an extra week to restart. Now that the stakes are higher with this virus I'm not so comfortable! I'm staying home except for medical reasons. It was also worrisome that the US Surgeon General said this next week is going to be bad. Gulp. Take care, everyone.
0 -
Rosie- I have seen that guide too. You can find it online when you look up Ibrance. My ANC was 400 when I first started Ibrance---over 2 years ago. My MO at the time said that anything under 500- high risk- was to the point that the normal bacteria found in our mouths could be very harmful. I now run 900-1000 AFTER my week off Ibrance. We do not test DURING my cycle.
0 -
Hi Candy 😊,
I’m not tested during my cycle either. Last week I came in at 810 so I’ll be repeating labs on Weds. My real worry is if this is such a serious illness how will our bodies with low counts to start with be able to fight it? I know you’re worried too. Maybe one good thing will be doctors holding the Ibrance if we have symptoms. (I had 2 weeks off once and my ANC reached 2,000.) My MO said I should call her with any issues, basically skipping the step of PCP. (My PCP is not easy to reach so I’m glad for that.). I recently heard she was retiring, good for her, disappointing for me. I don’t see her for a few weeks so I hope she’s not retired yet! Hang in there, I know this is a difficult time.
Rosie
0 -
I always use my own pen to sign in.
Two providers (DH's dentist and my dermatologist) have emailed us to say we should sit in the car when waiting for an appointment. Call them from the car and they will call or come get us when ready to be seen. No sitting around the waiting room with other people. Smart. You could suggest that to your providers.
0 -
Hi Rosie. Jaycee-- good to see ya. Good idea to wait in car versus waiting room. I have appointment with MO on March 31-- just a check-in appt. Will wait till closer to see if they cancel or not and will ask about waiting in car.
0 -
Candy, check in can be done on the phone.
I've been having this image of my onc nurse doing my blood work in the car and switching her out for my MO. He brings his stethoscope, of course. The imaginary scene makes me chuckle.
0 -
Ladies, you make me smile, which is not easy right now. ☺️SO glad to hear others having the coughy mucus thing... me too for months and my team already know about it. Had a CT scan a couple of weeks ago, results due on Wed with MO appointment. Not even a word from the team about what’s happening re COVID. We are in the ‘ most vulnerable’ group, so what do we do? Turn up to appointments? Phone in to check if still going ahead....which is silly as thousands would be doing the same?
Apparently we should receive letters telling us what the advice is, nothing as yet.
0 -
Karen, I had to laugh!
Where else can you tell your friends, ..."SO glad to hear others have the coughy mucus thing".....?!
Love from PatGMcCough
0 -
Ciaci, did your doctor explain why you had a lumpectomy when your diagnosis included stage 4 mets in the bone?
I ask because I have a tumor in my left breast plus some lymph nodes have cancer, but the new protocol is to immediately prescribe Ibrance and Letrozole and not have any surgery.
Thanks for sharing.
0 -
Hello ladies, I am cross coping from Kisqali tread since here I think is more active discussion. Please can anyone answer my question?
Did any of you got shot against pneumococci? It is Prevnar 13. It is given to kids or old people to prevent bacterial pneumonia caused by Streptoccos pneumonie, which can be secondary bacterial infection while your body is fighting viral pneumonia, so like now in the case of COVID-19. We all have low neutrophils which fight bacteria, so I think it can be of help. But I am not sure when to get it? Before or at the begging of the kisqali cycle? Or when? Thank you. I wish you all working treatments and no such a complication like Covid 19
0 -
Maaaki, I received my pneumonia shot a few months after I was first diagnosed. My MO wanted to make sure I was covered. It has been three years now so I don't remember the specifics. I am sure others will chime in on this.
0 -
Woodlands, I had the lumpectomy before diagnosis - it was done during the surgical biopsy. My tumor was attached to the skin (that's how I first heard about it - during a routine mammogram, the tech said, "Have you always had that dimple?"). Can't remember why, but they recommended a surgical instead of needle biopsy. Surgeon and I agreed ahead of time that if he could get clear margins on the tumor and nodes, he'd remove it all. I had no clue that it was Stage 4, until the first scan when they saw the tumor on my spine. They were able to do a needle biopsy on that, and confirmed it was the same cancer. At my second opinion, at Sloan Kettering, my new oncologist WAS surprised that I had had the tumor removed.
0 -
Checking in - I am off to the hospital tomorrow for blood draw and Thursday for appointment/injections. No NHS letter (wonka golden ticket to 12 weeks seclusion) through my door OR a text, so I guess I'm not considered in a high risk group you know, terminal but not THAT terminal. No information but that is par for the course in this country. I trust if there is something i need to know then my SBC nurse will text/call me for Thursday, otherwise they are restricting visitors and non-essential family members and the like to the hospital.
With all the ruckus I was three hours late taking my letrozole yesterday because I plumb forgot about cancer!
0 -
Maaaki,
I had Prevnar 13 in October of 2018. As I understand it, it is not a live vaccine, so it was fine for me to have it without disrupting my cancer medication. I think you get one shot and then a booster a few months later. I'm hoping it will help in case of corona virus. Good luck!
0 -
Maaaki- I am 49 years old. I asked my PCP about the Prevnar vaccine. He said I didn't need due to my age. ?? Yeah, but I have cancer and immunocompromised. I haven't asked MO yet.
Jaycee- I have not heard yet if my MO appt will be cancelled, by phone, etc. It is not till next week and so much new info comes out each day. I do not have the capabilities for Skype/Facetime/video calls, only audio calls by telephone. Yes, you would think the office staff should be notifying the patients how their appts will go.
0 -
Maaaki,
I also got the Prevnar shot. I need to go back for my booster.
0 -
Maaki - I got the Prevnar shot, then the booster a few months later. My MO and the Health Nurse suggested waiting till the beginning of my next cycle of Ibrance when my neutrophils are somewhat higher, which helps the vaccine work better; I also got the shingles vaccine in that time frame. That was 2.5 years ago, I did get pneumonia last January and it was not pretty
I was at home for 5 weeks. Nothing since and praying nothing more! Stay safe, healthy and smile lots!0 -
Pet Scan was Friday....a little hesitate about going. Monday Onc nurse calls that my appointment for Tuesday...bloodwork and Xgeva was still on but my appt with Onc will be by phone. Today at the hospital my husband had to sit in car and wait for over an hr while I had the bloodwork and shot...poor husband. Anyway Onc just called and no evidence of metabolic activity. Extra fluid in lung from last scan had decreased. May 1st it will be 4 yrs. Halleujah!0
-
Airlinegal,
Great news about your PET! Sorry your hubby had to sit in the car -- I was told by my center in advance that if someone came with me, that's what they would have to do, so I went by myself. I kinda liked the speed with which they got me in and out, though. It made it easier to take.
0 -
airlenal congrats 🎉🍾🎈
I had my Onc appt today faslodex shots and blood draw. No one could attend with me. Temp taken before I could enter and I had to fill out a form. Inside no waiting everyone was very professional one person in blood draw room at a time. Cleaning seats after each person etc.
since I was in close proximity to nurses (closer than 6ft) do I self isolate/quarantine for 14 days? Nurses are amazing. One of them was visibly pregnant.
Tanya
0 -
Amid all the madness some good news today. My MO phoned - I was supposed to see her tomorrow - scan all clear nothing to see! Also suggested taking a 1 cycle break from Ibrance to give me a wee immunity booster. Told her my wee online support group have mentioned that occasionally breaks are good and shouldn't impact. That's YOU peeps! Onc very reassuring, so I'm happy to do that after 22 months on Ibrance. The relief is massive as was pretty anxious about this one what with everything else going on.
Brilliant news Airlinegal and Sondra I too still have no letter from NHS. I finally called for advice and was told to attend appointments unless the MO called, which she clearly did. They are incredibly short staffed and basically swamped.
0 -
Karen - thanks for the update. I was just reading on the Breast Cancer Care forum of other UK ladies being pulled off Ibrance for the time being, so fully expect that this month (and let's face it, probably next too at this rate). Only concern is that I haven't been on it all that long, not like your almost 2 years.
0 -
Karen,
Great news! I'm sure you are SOOOO relieved. Also, it's great that you are getting some stress relief amidst all of this craziness.
0 -
Sondra, my MO said they are taking a case by case approach and stressed that I could continue on Ibrance if I chose to. I need a breather after all this time but we agreed to review on the next scheduled cycle. I’ll only be off it if COVID gets to the point where the risks of low immunity outweigh the benefits of the Ibrance keeping the cancer at bay. 1 cycle no biggie, 2 is another matter!
0
