Change to blood collection/Ibrance

[Harley_31]

3 month follow up visit with Oncologist. Oncologist advised that my bloodwork for the continuance of Ibrance is now changed to every 3 months from monthly collection. As I have been on Ibrance for more than 3 years with no delays in treatment that I can do bloodwork every 3 months. As any one else had this change while on Ibrance? Unsure if I am completely comfortable with this direction. I remain stable with no progression but as we all know that can change.

[Dragonfly2]

Lucky you🙌🙌. I do understand your hesitation to be on a longer leash. It may feel uncomfortable as if you’re being abandoned…but now it’s up to you to be tuned in to your body and be alert to any fatigue or infections. You have been able to tolerate the meds well and your ONC’s suggestion to come every 3 months is a suggestion. Remember that if you really want to come every month or just tr6 every other month, you can make that request. Best wishes for continued success!

[Harley_31 in reply to Dragonfly2]

I like your suggestion of every other month and will advise Oncologist of this choice. Sincere thanks for replying.

[2Hopeful]

I have bloodwork just twice a year. On Ibrance over 3 years and it’s been fine. My oncologist knows how much I hate being stuck with needles so works with me.

[awesome4ever]

Hi Harley. First of all congratulations on your stability on Ibrance for 3 years. I was on Ibrance and Letrozole for 5 years and it was a wonderful easy treatment for me and I loved it. I think the move to bloodwork every 3 months is very reasonable since you have done well over a long time. The monthly bloodwork is really only needed at first to determine how your body will react to the drug and once that is established then it certainly is reasonable to extend the time between labs.

Just look at it as gaining freedom in your life with less appointments. It sounds like your scans will continue to be every 3 months and they are the best indicator for surveillance with this disease. The general lab work that you have been doing will not guide a treatment change. As well I'm sure you have a patient portal that if you need to contact your oncology team you can. Sometimes it's hard to cut ties with the oncology team but you have to know that they have your best interests at heart and they obviously feel you can be given more slack as indicated by your stability. Instead of your monthly labs schedule a lunch date out with friends...a far better way to spend the time in my opinion. Take care.

[Harley_31 in reply to awesome4ever]

Thank you for your words of support. I now feel that I can plan on longer get away trips without worrying about monthly bloodwork. My Cancer Care centre is a phone call away and always helpful. Counting my blessings.

[awesome4ever in reply to Harley_31]

Planning get away trips sounds very good to me and knowing your cancer center is just a phone call away should take away that stress too. Enjoy.

[Red1246]

I have been on Ibrance since September 2019 (100 lowered from 125 after first cycle as wbc’s very low).

Because my white blood cells take longer to recover each cycle, I wait 3 weeks before re-starting Ibrance, but only if my bloodwork is good enough. It usually is but on occasion if it is not I wait a few days. I’ve been told I will always do the labs at the end of the period off Ibrance to see if it’s safe to re-start. My CT scans have been stable since I began Ibrance. Not sure if this is helpful but thought to share.

Wishing you all the best. Kathleen

[Kerryd22]

I only have bloods taken before the Xgeva injection at my GP clinic so that’s every three months or when I organise it. I’ve been stable for several years on Exemestane alone and I only have scans every six months now.

[hurricaneheather]

yes, I’ve been doing that for years. have been stable, NEAD since 2016; dx 2015.

[Merma]

Yes, I get it. I was tired of the monthly blood tests for a little over 5 years on Ibrance, so we switched to every other month. Then, I had a blood test that showed my blood counts weren’t recovering, so I was back to monthly visits.

Then my dr had to leave to take care of elderly relatives, so my tests were constantly being delayed. After much begging on my part, I finally got the cbc at the end of the 2nd week of the cycle. Again, bad counts - this led to a 3 week delay to get back on Ibrance. Was able to get on again for three weeks, but had a recurrence and again, bad blood counts. Was off Ibrance during treatment for one month.

At the end of one month, most of my blood counts were normal. Three weeks Ibrance and again low cbc counts. I was on anastrozole the whole time. Now, we’re waiting for the genome testing and the liquid biopsy results to know what to do.

I’ve told my dr that I am anxious because I have not had regular systemic treatment, the anastrozole has probably run its course, and now Ibrance, at this dose is toxic to me.

I guess my rambling really didn’t answer your question, but I think it is better to have the cbc testing monthly.

[bikebabe]

I recall the initial anxiety in going from 1-3 mthly blood tests especially as my neuts platelets and lymphocytes were so low and my bilirubin spikes up but haven’t come to any harm and I now enjoy the freedom. I keep my own tracker and if it gets too bad would ask them to increase frequency if they had not done so.

[Totheriver]

I was changed to every 3 months after doing it monthly for 4 years. I was like you at first but am ok with it now.

[love2golfwell]

I have been on Ibrance and letrozole for 3 years and have had my bloodwork done every 3 months for awhile now with a PET scan every 6 months as I have been stable. I am comfortable with this as I only have veins in my left hand that they seem to be able to access as the vein in my arm rolls. I cannot have blood drawn from the right arm as that is side the mastectomy was on. So far it has been good. Your oncologist extending the time between bloodwork is a sign that things are working for you, which is great. Best wishes.

[Praising in reply to love2golfwell]

I have to go monthly for labs on Ibrance ugh

[love2golfwell in reply to Praising]

In the beginning that is what I was doing and it was not fun. Many times they had to poke my veins several times to do the draw and I would end up bruised. Going every three months is good for me. I'm sorry you are still on monthly labs. I agree that it is not very convenient for organizing your time. My neutrophils and WBC have never gone very low and I know I am very lucky for that. Sending hugs and prayers.

[Praising in reply to love2golfwell]

I’ve had a year and half break and having now to start back….thanks and hugs. I was on the lowest dose and it tanks me to 1

[love2golfwell in reply to Praising]

Did they put you back on Ibrance or another med? Also, do they have any suggestions for supplements or nutrition that will bring up your neutrophils? I have not really had an issue with that however I have been able to stay fairly active in the last three years and have changed a lot of my eating habits to more fruits and vegetables and proteins. I don't know if that makes a difference but I knew it could not hurt. Best wishes as you go back on meds. Hope they work well for you.

[Praising in reply to love2golfwell]

I take a lot of supplements and Vit c. My normal wbc is only 5. I’m paleo

[Beryl71]

With my previous hospital I was on three monthly checks and I found it most convenient. When I moved my current health area needs blood checks every month. It makes it very difficult to organise things like going away. I think it sounds like you should be celebrating your freedom!

[Praising]

That is great that your wbc dosent go low the neutrophils. I’m getting ready to go back on after a year break and progression. But often have to delay it cause of low counts.

[PJBinMI]

What your body is telling you says more about how you are doing than blood work or scans, so just ask your onc, or one of the RNs what symptoms of progression to pay attention to. Getting blood work every 3 months is common when we're stable! So this is really great news for you.

[Gingerann1]

Hi Harley! This would be great news for me now that I’ve hit the 3 year mark on Ibrance and have gone monthly for bloodwork (6 hrs. RT) but I still have to get the Fulvestrant shots there monthly. If I could switch to the pill form instead of the shots I would go 4 times a year for bloodwork and scans 2 of those times each year. That would be awesome! I have been NED for 21 months now so that should factor in. Please update us on how this goes. I am going to discuss with my Onc next time I go in Dec.

[Praising in reply to Gingerann1]

Do they do labs for fluvesant? I may be starting that

[Gingerann1 in reply to Praising]

Since I’ve always had the combo of the 2 I’m not 100% sure but I’ve always assumed it was the Ibrance that tends to drop a lot of your counts, in particular the Neutrophils which have to remain above 1000 (of 1.0) so have to be monitored closely.

[rememberthegroup]

I have been on Ibrance with 3 month bloodwork plus quarterly cat scans sine 2019. I never know I had a choice! This has worked for me and best of luck to you.

[Mumberly]

I have been on Ibrance for 14 months and I was moved from monthly bloodwork to every three months after the six months mark.

My white counts hover around 1 after three weeks on so now I do two weeks off.

Other than that, it seems to be doing its job and I’m looking forward to a long run on this drug 🤞🏻🙏

All the best with the timing change for you.

Kim