Once again my anc is below 1. It is .93 and they don't want me to restart my kisqali yet. Tomorrow I will hear from the doctor's assistant. It is so frustrating not having a definite treatment plan. Have any of you done the reductions for Kisqali?
Has it helped reduce your absolute neutrophils?
Any input would be welcome.
Thanks,
Janice
i read one you tuber comment she said when she has low WBC she drink papaya leaf tea and help her a lot? i then bought some papaya leaf tea drink occasionally taste a little bitter my WBC drop little with other cdk4/6 call verzenio but past few months my hypertitis virus b acting up i have to take antiviral pill to protect the liver so my hemoglubin drop couple points with medication i then bought papaya leaf tea to drink suppose also help with anemia, taste bitter taste like i am eating bittermelen
Hi Janice, I take 600 mg Kisqali to control the metastatic breast cancer in my bones, skin, spleen, and lymph nodes. I have found that my neutrophils stay above 1.0 if I take the Kisqali (ribociclib) only on weekdays. On the weekends, I take the letrozole by itself. Please note that there are research studies supporting this schedule for Ibrance (palbociclib), but I have not found any for Kisqali (ribociclib).
P.S. I am 78 years old. I was trained as a clinical psychologist so am capable of reading medical journals.
hi Hazel,
I have read your posts and wonder if you are following your oncologist’s guidelines or have created this plan on your own. I know Kisqali does have a dosage reduction plan but my doctor has not suggested that yet. Will see what they want to do. I like your regimen but don’t you have to take the blood tests to verify your neutrophils have gotten above 1 before you start again each 5 days?
Will see what I am told today. I don’t think they will let me start with out another blood draw.
In the meantime my Petscan is mid May and I would like to get as much Kisqali into my system before it.
I always enjoy the various advice from these posts.
I love the chocolate advice but I don’t think that is working as my husband and I do eat dark chocolate often enough. I noticed this was the first time my glucose went up over the normal limits. I think I need to stop all my evening snacking.
Hi,
I told my oncologist about my 5 days on/2 days off regime with Kisqali, and he accepted my reasoning. He is having me check my bloodwork every month to ensure that my CAs stay in the average range. My neutrophils are checked monthly as well. They have remained above 1 ever since I started this regime. Do keep in mind that Kisqali levels in the blood remain constant after 8 days. Any amount extra is excreted.
Regards,
Cindy
By the way, how much water is everyone drinking daily on Kisqali or Ibrance?
I only drink water when I'm thirsty so no special amount.
I am wondering what you think about my continuously having to take two weeks off FTER MY 3 WEEKS ON Kisqali to get my neutrophils up. My oncologist has not suggested I reduce my dosage yet and that seems to be the appropriate protocol . Do you think I lose more Kisqali in my system on this protocol than taking the 400 and hopefully only need to take the one week off?
Since Kisqali remains in one's system for an average of 8 days, you would, of course, have less in your body (i.e. none) after two weeks off, than after one week off at a lower dose. Ask your oncologist to read the relevant research studies. However, keep in mind that s/he will simply follow whatever her/his practice guidelines say. The main point is whether or not in your particular case the lower dose of Kisqali keeps your cancer markers in the normal range. It would not hurt for you to try the lower dose for three months to see whether it works as well.
Thanks for the quick response. I was just told to do just that, reduce the dose to the 400mg. Basically because I have consistently had to wait the two weeks to restart the cycle. My next PetScan in a few weeks so we won’t know how this will affect me for awhile. Of course I hope that this PetScan is ok, in any case.
There was a post here about low wbc and I tried the suggested solution because it was so simple. One square of dark chocolate (minimum 70%) per day. After one month I had a blood test. These are my blood results.
WBC Dec 23 was 3.6 Mar 24 5.7
Neutrophil was 1.96 now 3.63
Lymphocytes was .94 now 1.36
Those numbers have been below the normal range for years for me. I didn’t do anything else dietary wise.
There’s a post with a link that explains the science. I’ll find it for you if you need it.
I couldn’t believe the answer was so simple but I thought it was worth a try because it’s safe enough. I don’t like dark chocolate but I can eat one square a day for those results.
All the best
Kerry
I hope that continues working for you. I just read research that the chocolate had to be 95% dark choc. and you need a daily portion of 1.75ounce. I priced it out as well as figured the extra calories and don't see it as an option with the high chocolate price and amount of additional calories. The other thing is ANC labs can vary daily similar to platelets. I might try an afternoon lab but need to make sure the results reach my doctor before she leaves for the day. Maybe 1pm.
All I can say is that I ate about 6 grams of 70% dark chocolate per day for a month and I had the results I quoted. I think that Australian lab results are different to US but I don’t know if this is the case with straight blood counts. I’m paying about $4 for 180g right now but it’s normally $6. That’s enough for a month so it’s a cheap option really. The 90% chocolate would be bitter and probably a little more expensive because it’s European but I don’t think I’d be quite as willing to buy it especially without evidence to support it! As I have regular blood tests I can easily check whether the results are ongoing.
Apparently it affects cholesterol levels too so I’ll get that checked next time.
Holding the Kisqali is part of the treatment plan. On my off week with Ibrance my ANC was .67 then a week later with no further meds in me, I was ready to start the cycle again and the ANCs were even lower at .59. Now I'm in my second week of holding Ibrance. My oncologist lowered the dose to 100 mg.
I learned from this community that it's ok to have the Ibrance or Kisqali held until your anc is at 1 or you can become sick quickly with such little defenses. You'll be ok and if Kisquali has a long half life like Ibrance it is still working on you. I know it is disappointing because this is the 3rd time my med has been delayed and it's nerve wracking but it is not unusual.
I tried Kisquali at the initial dose of 600 mg daily with 21 days on and 7 days off. At the end of the first round, my ANC was only .5, so the Kisquali was held for a week. At the end of that second week off, I had contracted COVID, so couldn't go back on the drug right away. My COVID case was moderate and the sickest I'd ever been as an adult. Even with the Paxlovid, the symptoms lingered. My doctor wanted to reduce my dose and put me back on the Kisquali, but I declined. The side effects were so intense that I was bed ridden, even before catching COVID. Instead, I've continued with the monthly fulvestrant and Lupron injections as well as Zometa bone strengthening infusions every 3 months. The hormone therapy does the heavy lifting. The CDK 4/6 inibitors are optional and aren't strong enough to work by themselves.
Turkey Tail mushrooms help increase WBC counts. I've been taking it ever since my ANC dropped to .5 on Kisquali. I use the Host Defense Mushrooms brand of turkey tail mushroom mycelium powder. You can mix the powder with warm water or sprinkle it on food. I make a tincture and like the taste.
Do you think it really works? Better than dark chocolate?
I’ve never tried using dark chocolate for WBC levels, so can’t compare. I can confirm that it’s raised my levels to the healthy range. Chocolate may work, but also adds sugar which also helps cancer to grow. In the natural health world, it’s considered best to maintain a low glycemic, low fat diet. The nutritionist in my oncology office approves the use of Turkey tail. It’s easy to buy at the health food store or online. It comes in capsules, if you don’t like the taste. I’d definitely recommend using something natural that doesn’t have any side effects before resorting to a pharmaceutical drug to raise WBC’s.
I think I will give it a shot.
I am on ibrance which also lowers wbc and anc levels . I have been on ibrance for 4.5 years . Since I have not over these 4.5 years had issues when my anc is below 1.0 at the end of my week off of Ibrance , she allows me to restart if my anc is above .80 st the end of my week off of Ibrance (taking it 3 weeks and then 1 week off).
Most important I have found that if I have my blood test in the afternoon (after 2pm) my anc is higher ....enough that it is over 1.0. This past week it was 1.67 .
I used to always have my monthly blood draw and fulvestrant appts at 8:30am. Since I discovered the afternoon levels are higher, I have not had to withhold restarting .
I remember reading that awhile ago. I think it was inconvenient this last time to wait until the afternoon but will do. So you have started when anc was .8?
Mine was .93 yesterday and told to wait.
Yes- i started ibrance 11/2019. I had two dose reductions due to consistent low anc (.70 ish ) and had to take an extra week off . Once they were over .80 and I had not had issues with getting sick or a fever from low anc , my onc decided I could restart if the anc was .80 or higher. I was usually around .80. My onc felt confident about restarting below 1.0 because I had been on it without issues for over a year .
Since I am started afternoon blood draws they are always close to or over 1.0 . It isn't as convenient but once a month it's worth it to me so I can have the full benefit of the dose as prescribed.
Now it seems my glucose is up, eating terribly, and they want me to fast before next blood test. So fasting until 1 pm, not a great plan.
I read in a forum to eat Kiwi and my NP suggested to do a work out since it can stimulate the body. Also insist on getting the blood work done and checked even just a day after. I have on several occasions saw my WBC jump in just a matter of 24 hours after my Ibrance course.
Kisqali
Starting Piquay this week
NED with Kisqali
Nervous about Fulvestrant and Piqray treatment
can’t eat
