Ibrance (Palbociclib)
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Elenas,
Right now i3C is the only way to try to activate PTEN, until something better is in trials
For COVID symptoms I'd take Pepcid AC right away, its main ingredient blocks virus entry- (and a Wuhan study showed that patients taking Pepcid had a lower death rate), as well as zinc, baby aspirin to fight blood clots, Vit B1, and Vit D
Don't know how Remdesivir works, but CCR5 is well known as a coreceptor for other viruses like HIV; I guess maybe the high-affinity antibody that Sorrento isolated to the COVID spike protein sounds like it would be a more selective therapeutic?- it's interesting to guess how this pandemic will be resolved.
Shocking to see how quickly a drug can get thru clinical trials when the system gets its act together, tho
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Aviva5675 - sorry to hear that you had to join the club. Ibrance capsules need to be taken with food, at least 400 calories with about 30% fat. It just says "take with food", but does not say how much until you dig into the microscopic print that comes with it. Ibrance tablets do not require food. I asked a pharmacist what changed, and he did not understand my question. Capsules are being phased out. I asked my MO and she speculated that the capsule might require stomach acid to dissolve.
Stay hydrated and active. Fatigue has been a problem for me, but I can usually push through and try to do something every day. Sometimes I get mouth sores, salt water gargling helps. I'm thinking I should do salt water gargles every day as prevention rather than doing it when I get the mouth sores.
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I saw my MO today and asked about the Ibrance (capsules) and that I wasn't taking my dose with a meal (I didn't take it on a completely empty stomach, just not exactly with food). He wasn't concerned at all and assured me I was still getting the benefit of the medicine. I'm taking the tablets now so I don't have to be concerned with that aspect anymore anyway, but I wanted to be sure.
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Thanks, I guess I have tablets. Its only been about a week, but Ive noticed a little mouth dryness, some upset stomach in the morning...Glad but not glad to be here.
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KBL, Candy,BevJen and Penny, thank you for your input on my dental issue. Saw my dentist this morning and he is referring me to an oral surgeon. I have an infected tooth which has to be extracted;not looking forward to that. Got in touch with MO and have to go in for lab tests tomorrow morning, stop Ibrance until dental work is done and then get in touch with him before starting it again (I am on my 9th day of cycle 7) so am not sure where I will start. I am on amoxycillin for 10 days,started it Sunday. I hope they won't pull the darned thing on Friday and leave me in the lurch for the weekend!
Candy, I hope your issues get resolved soon; you've been through so much!
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Lee64, ouch. I hope you feel a lot better once that tooth is out. I hope they don’t do it on a Friday either. That would stink. Thank you for letting me know. I was wondering how it was going.
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For those of you speaking about and taking I3C, are you talking about dietary intake or the supplement?
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Hi Jackie, Not sure about others but I take I3C and try to eat three servings of cruciferous vegetables a day.
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Lee64- Thank you. I am now on my week off Ibrance so I hope those cells are waking up and coming to attention. I hope my lab next week looks awesome. I have my second-opinion MO appt July 13 to see what she has to say about all this.
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ladies thanks for all useful information about how best taking ibrance along food.
Like Simone, I try to take vegetables: broccoli, kale, spinach etc. once a day. Also add more antioxidants fruits to my plate. My onc doesn’t believe any supplements! So I have to deal with low rbc and wbc.
I wanted to ask you about other side effects of taking ibrance. We all know about fatigue, mine especially in week 3. I’m still experiencing hair loss, I’m in cycle 8. And some chicken pox- like are around upper back and over months growing around upper chest, and face as well. My onc suggested to use hydrocortisone. I am glad to ask my onc about that, because I scared if those related to infection!
Bes
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Simone...thank you.
Julia...my MO doesn't believe in supplements either. I eats lots of broccoli though.
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My blood draw was yesterday. My neutrophils are notoriously low after my off week. I’ve been at .94 and .95 and was told to go ahead and start. I was .86 yesterday. They still let me start.
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KBL- Has your MO ever said anything about your low numbers? Or said if you had a cutoff of when you would not be able to start the cycle--say under 800? Just wondering.
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Hi, Candy. Since I'm notoriously low, they have usually made me stop when I'm this low. Back in March it was .84, and they had me hold a week. I've been in the .50s in the beginning, and that's when they lowered the dose. Since they know this happens every month, they said go ahead this time. I don't know why.
They have talked to me about switching to Verzenio to see if my ANC would be better. I resisted before because I was working. I may consider it after this month to see.
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Interesting. I'm on my first cycle of Ibrance. The day before I started my first cycle my neutrophils count was 1.62 and my white cell count was 2.8. Then on day 15, my neutrophils count was 0.8 and my white cell count was 1.5. Lymphocytes and monocytes counts were also low at .48 and.17. My MO didn't have me change anything.
I'll see her next Wednesday and will have blood work the day before. I'm trying to be extra careful to avoid any infections.
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Sunshine99,
The nadir (or low point) of your neutrophils should occur at around day 15. Then the counts gradually start going up. You will probably be fine.
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Thank you, BevJen. Since Ibrance is still new to me, I'm not sure what is and is not a cause for concern.
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Sunshine,
Most MOs do extra blood work when you are starting out, then they test you between cycles of Ibrance. It's those numbers that usually general more concern from what I understand. My MO doesn't really talk that much about my counts -- just looks and them and says "keep going." I have only dropped below 1.0 on my neutrophils one time, and it was after a nasty virus, so she kept me on the same dosage and said to restart at the appropriate time.
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KBL- Interesting. My current MO is stressing about my numbers--- all my long posts here about all this saga. I suggested changing to Verzenio since stats say less neutropenia but more GI issues (don't really want the diarrhea, but ...). MO said could not laterally move to another CDK 4/6 inhibitor--- insurance would deny and that is not how it is done. If you move from the CDK's, you move to something else. ......That is why I am seeking another opinion.
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My CA27-29 has always been in the normal range for years. My latest test result indicates it's jumped to 50.8 last week from 22.8 last month!
Thoughts?
Tina
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Candy, my next appointment is July 27. I will ask. I have insurance through my husband’s company. I would have to check to make sure they would allow it.
I’ve been keeping up with your posts. I have never been told they want to give me anything for the neutrophils to boost them.
I am glad you’re going after another opinion. I like my MO. She will sit with me as long as I need her to. I was literally with her for 45 minutes this past Monday. I never feel rushed. I told her I’m one of those people that always has ideas. She said she appreciates that much more than people who do whatever they say or don’t listen to them, like call if you get a fever and they don’t call.
I know your options are limited because of where you live. I’m sorry about that. I am eventually going to be moving, and I’m going to have a hard time leaving this place. I will compare them to whoever I have next, and they will have a high bar to meet.
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Tina,
I think you have to wait and see what the pattern becomes. That could be a one-time blip, or it could be something brewing. You could ask your MO if they will retest in 2 weeks or so (I am assuming that you are already doing testing every 4 weeks?). My CA27-29 is a lot higher than that right now, but when it was in the normal range, if I had a blip, sometimes it was because of a virus or something like that. Repeating the test sooner than it would have been repeated showed that the uptick was just a blip.
I'd just ask your MO.
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Thanks, BevJen. That makes sense. I've never had anything but normal numbers on the CA27-29, to the point where I thought I must be one of those people with meaningless markers. Thus my reaction was "Yeeks!" when I saw that jump.
Yes, I'm tested every four weeks when I go in for Faslodex injections.
I'm due for scans in two weeks, so I would imagine that might help clarify things.
Tina
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Hi, Tina. Mine went up two months in a row and back down this month. I kind of took last month’s rise with a grain of salt because I had just come off an antibiotic, so I had a feeling it might jump. It had jumped 86 points in two months but back down 71 this month. Mine are also quite a bit higher.
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Hi my Hot Flash friends !
Question; Has anyone changed over to a cool system mattress in order to help with hot flashes and if so did it help?0 -
Tina 2
You have had stage IV with lung mets for 9 years? Amazing !! Do you remember the grade??
Few on here seem to have lung mets so your story is so encouraging!
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hi GinnyO2: Hot flashes and night sweats are my number 1 side effect. Hence the night sweats bring on insomnia. My MO wants to add more medicine lexapro and Ativan if needed. I don’t want to add more meds or supplements. If you purchase the cool system let me know how it works? Thanks
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Tinker1, I sure will!!
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Hi Dancers,
Good news - my pet scan results show that I have "no evidence of active disease" and nothing was taking up the FDG with the exception of a 10 year old healed rib fracture that has taken up a mild amount all 3 of my petscans so the doctor is not concerned. I have been on fulvestrant and Ibrance for 6 months. Overall she was very happy (she is not very demonstrative but seems to be wicked smart). Obviously this can turn on a dime but today is a good day. As my vocal cord was no longer paralyzed when it was scoped in the end of May I was hoping that meant the big cancer node was gone (that was pinching the nerve).
Not so good news is that my neutrophils are .69 today, my last day of week 3. I need to retest next week and might get dropped down to .75 mg of Ibrance. If it continues to impact my neutrophils she might switch me to the CDK4/6 that starts with a V and has the side effect of diarrhea. I am hoping to stay on Ibrance as I still work and can't imagine selling real estate while dealing with diarrhea. We will see what happens.
I am interested in hearing about the cooling matress pad.
Hope you are all doing well, despite cancer and covid.
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Ginny, there was no grade cited on the pathology of my lung met in 2011. There was also no grade cited on the biopsy report of my first breast tumor in --wait for it--1985. I think it's possible grades were not of concern then.
Yes, I've done amazingly well living with lung mets until they started to grow again recently. Fingers crossed that Faslodex plus Ibrance will knock them into submission again!
Tina
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