I haven't posted in a while so Happy New Year and I hope you are all progressing well.
I have MBC that spread to my spine, neck, rib bones and liver and was diagnosed in April 2017. I had 5 weeks of radiation for the spine tumors and then 2 months of chemo.
My scan in September showed over 50 % remission so my treatment changed to Tamoxofin, Lupron and Exgeva and no checmo. Then in December my scan showed a new legion on my spine so I just had 5 days of radiation and was switched to Ibrance 125 mg and Falsodex. I've been on that for about 2 months. My blood work today showed low white blood cell count. My onconologist recommended lowering my dose of ibrance to 100 mg.
Any experience with this? Should I be worried about the blood count?
I am also getting achy back pain, shoulder, neck and hip pain. Esp in the morning.
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lynzer
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Hello, I am on cycle 10 and still at 125mg, but many on this sight have been lowered to 100 mg and still going. They have reported a softing of the bone pain on the lower dose. YOu are in my prayers...stay positive.
I too have many bone mets and been on anti-Estrogen drugs which had little effect on me. I’m on Ibrance 75mgs with Letrozole.
My first bloodwork reading on the lower dose of Ibrance was promising. It lowered my tumor markers quite a bit.
I go for more bloodwork on the 22nd of Jan and will see my Oncologist on the 25th and will find out how I’m doing on my 4th cycle of Ibrance.
So, I wouldn’t be afraid of having your Oncologist lower your dosage. Ibrance does lower your white blood count. That’s one of the primary side effects of this drug,
I think if you’re closely monitored with blood tests at least once a month, your Oncologist can prescribe the right dosage for you that will help keep the breast cancer in check. 125 mgs may just be too strong for you.
Hi there,metastatic breast cancer diagnosed last November. My full blood count was pretty bad on Ibrance 125 they stopped for 2weeks to get better blood tests and then reinstated me on Ibrance 100.My blood values are not so bad now that I'm having Ibrance 100.Our fight will continue and we will never, ever give up. Peace and love for all.,
When I first started Ibrance it kicked my wbc to the curb. My doctor gave me a break and then restarted it. Although my wbcs are mostly in normal range. I had pneumonia recently and they dipped to around 2.8 but came right back up the next day or two. One side effect is, and this is only about once a month, I feel very tired. while driving home from work I fight to stay awake. That gets better with going to bed earlier and eating lots of greens and no junk. My hair has thinned out. But hey so far I’m stable so I deal with the r est if it. Good luck!
I am new to this but ... Do doctors suggest nepogen for upping you white blood cell counts ? I had to take it when I was on my first diagnosis of breast cancer 10 years ago and it worked . Not sure if they do that and I am also from Canada if that makes a difference but it may be worth the ask. Thinking of you
When I was getting IV chemo I did wind up taking some neupogen shots So far I guess there was no need When I first started Ibrance I had to take a 2 or 3 week break but since then it’s always been ok I do attribute that in part to juicing greens makes me feel so much better
Hi Lynzer, I am on 125 ibrance, but have heard others on the lower doses, and the effectiveness appears to be the same as the higher doses (sorry, I dont have a reference to a study which states this (maybe others will), it may just be on an individual basis). Pain, I know there are all sorts of meds that are prescribed, your Doc would know best for that. Myself, I exercise and meditate, I believe it helps to keep all that in check. Meditation helps to increase your threshold of pain, among other very good things! You can use the insight timer (free ap) and find a group in your area that gathers together as a supportive group for meditation. The group is called a sangha. It is not a religion, but more like an exercise group, but for your mind instead of your body!
However you find your way, know that I am wishing the very best to you!
I started on Ibrance & letrozole last January & my neutrophils dropped after only 1 week so I was moved down to 100 mg for 2 cycles & my neutrophils dropped on that too. I have been on 75 mg since the end of march with some extra weeks off here & there. I was on 2 weeks on, 1 week off & still was having issues so I just recently got switched to 2 weeks on, 2 weeks off & I will start that Friday after a month off completely just to help my counts rebound! My last two scans (August & December) both showed as completely clear! I really haven't had any side effects from low counts & I stay pretty active.
There was a study presented at the San Antonio Breast Conference that showed no difference in results of Ibrance on the lower dose so I wouldn't worry about that! Good luck to you.
I have been on ibrance 2 years. Ny wbcs stay around 1.9. It is the anc’s they watch closer. How are your anc’s? Also tak glucosamine confronting and MSm for the pain and it held tremendously.
My WBC is always a little low but nothing concerning according to my doctor. I honestly have really not had any side effects from the Ibrance but then that makes me wonder if it is working. I have more bloodwork done this Friday and my first scan since starting the Ibrance. I am in my 5th cycle. Prayers for you.
I totally agree. Since my diagnosis I have been doing a lot of reading on Buddhism. Listen to Buddhist online dharma talks and treated myself to a weekend at the Omega institute with Pema Chödrön, an American Buddhist nun who has written many books and is just a joy to listen to. Funny too! It helps me so much. Trying to get in to a meditation practice. May your scans be great and may you continue to feel well
I started with 125mg Ibrance with the Femara also but that 125 dosage ranked my white count so the doc reduced it to 100mg and my count is still really low (1.3 and neutrophils run under .90) but it works and I’ve been on it since 6/16 without it further spreading. Like you it is all up and down my spine, ribs, chest, skull and yes I hurt all the time but it is the new normal and I just pop Tylenol as needed and save the good stuff that makes me loopy for bedtime. My spinal pain is due to the compression of the vertebrae that got eaten by the cancer. I’ve shrunk a good 2 inches.
No but I am getting worried because the pain is continual now. I see the my onc on the 30th and I’m sure he will order a bone scan or mri. I don’t like those tests-the unknown can’t hurt me ya know.
Thanks for the reply Becky! Your issues sound very similiar to mine. What do you take at night for the spine pain? Trying to avoid opiates, they don't seem to work and I am afraid of addiction and stomach issues.
Diaudid and Lorazepam but only at night. Been doing it for 2 years in April and I haven’t increased the dosage or had tummy issues. Well, any worse tummy issues. I had all but a foot of my colon removed 17 years ago because it got stuck in a chronic state of iliac. Now I take a daily Linzess just to keep things moving. The Lorazepam gets me to sleep because without it I will stare at the ceiling all night and worry about stuff.
I take the same thing. My white count varies but not to low this week it was 3.5 pretty good actually. Is falasadex the same thing as letrozole? Letrozole causes muscle, joint and bone . I take Tylenol and prescription pain meds as needed but I had a spinal cord compression surgery that's causes pain almost daily. Hang in there, stay positive. Prayers for you and all the other warriors!
Thanks! I'm not sure about letrozole but it sounds like they may be similar. Falsodex is a hormone shot that prevents the cancer cells from growing or multiplying.
HiLynzer! I was on Ibrance, letrozol and X Geva for 18 months, now 2 small spots on my liver so onc switched me to Xeloda. The white blood cells always go down low on your resting week , sometimes sooner, sometimes later, but they go back up on their own, I felt very energy drained during that period of about 7 to 10 days until back on track, sores on my lip, and netropenia on hands specially. Hard to accept at times as I am a pretty active person and got very frustrated when a lot to do and my body wouldn’t cope... but still hopeful and staying positive with God’s reassurance and family and friends’ love and care...
Hello, lynzer! I had just been on my second cycle of 125 mg Ibrance (added to letrozole) for a week when a lab result showed that my white cell count had plummeted. My oncologist took me off Ibrance for a week and will see me following a second lab this coming Friday. So yes, I did have a deficit reaction and will find out if he wants to put me on a lower dose going forward. My mets are primarily in spine with one on hip; I have notice a bit of aching in spine, even after 10 radiation treatments. Hope our WBC's get back to normal! Bless you!
Hi Seattle, I have responded to other posts of yours but---- today wondering, maybe you answered elsewhere but-- How low did your neutrophils get when you first started taking Ibrance. My first blood after two weeks was .8 and off for a week and then .6! Totally disappointing and will go back, without drug, for my third next Monday. Also did your doc keep you on same dose and was your second month better on your neutrophils? My doc keeps saying that I stay on same dosage but I question that. My blood pressure dropped and I was so darn tired that I was sleeping 12 hours at night and could barely move during day. This is TOTALLy not like the energizer bunny that I am!
My blood panel doesn't show neutrophils, just the basic white blood cell (WBC) value (k/ul.)
When my journey started in November, my WBC was at 6.7 (standard range is 3.8 - 11.0.) After introducing Ibrance in December, it was 6.9. But in January, it dropped to 2.1, and I had the Ibrance removed for 1 week. When it was checked again this month, it was still low (2.5), so I was told to stay off it until next month, and that I would be resuming the Ibrance at a lower level (100 mg) at that time.
Do you take any other meds? I'm also getting a shot of Xgeva once a month, and that has really affected me--so much pain in joints and back for the following week. And I'm with you about the energy levels--it really impacts your ability to get as much done as you are used to!
I drink lots of tart cherry juice now, and the basic multi vitamin, calcium, Vitamin D, and magnesium to help my bones.
Hope you are feeling better today! Bless you, blms!
Thanks Linda, I am aware of the ranges, etc in blood work. The neutrophils are really all the oncologists care about compared to your WBC. I am just getting annoyed at the steadfastness of the oncology team stating that 125 mgs seems to be it! I am not sure that is the dose for me and will stay on top of all of this. I have been off Ibrance for low neutrophils for 10 days, my blood pressure back up and, although my neutrophils are too low to begin medication again, I feel normal. My sense today is that I will stay with the high dose, depending on next month, for the 3 month marker and then after my scans, I will reassess no matter what they are telling me I HAVE to do. This forum is helpful. thanks.
Hi I have experienced the same kind of things in my journey of MBC. To help low white cell count from becoming an issue I take two mushroom capsules made by my community for an immune booster and extra vitamin c for the achiness and just general general well being I take two capsules of turmeric a day. I get them booth from Amazon
Does your Oncologist approve of the mushroom capsules and Vitamin C?
I was taking, and am still interested in supplements, I take a whole a food multivitamin plus B Complex to boost my energy level. I was taken off Calcium supplements for a while because my number was too high. I stopped the mushroom capsules and turmeric capsules because I’m just confused by it all and have no Naturopath to consult with.
After yesterday’s appointment I was told that I could take 1 tablet of Calcium now per day because my numbers are down.
As far as Ibrance goes, I’m ending cycle 3 on lowest dosage of 75 mgs. My tumor markers have drastically gone down on this dosage though I’m not in the normal range. I take it with Letrozole.
When I was on Faslodex shots my tumor markers skyrocketed and I was sick to my stomach. The AI’s didn’t produce good results for me.
On to Xeloda for 2 years which I liked being on. Markers climbed and switched to Afinitor, high dose, which caused lots of edema. Off that and am now on to Ibrance which I’m tolerating pretty well.
I read from someone on this site that Letrozole causes lots of aches and pains in joints, etc. That’s exactly what’s happening to me! As a matter of fact I just had an ultrasound of my left calf because of shooting pains there. No results in yet on that. It)s probably a side effect of the Letrozole.
Let me know what the Oncologist says about your supplements. I’m interested in his opinion.
Meanwhile, keep up your good progress!
If anyone would like to share their opinions on vitamins, etc. I’d love to hear from you. Thanks so much. Kats2
I have been on Ibrance since July last year and my white blood cells are low as well. Not low enough to require platelets but right on the border line. My Dr started me on 125 mg and last month I seen the Nurse Practicner and she said after I have my next scans they may want to drop me to 100 mg. I seen the Oncologist yesterday and she told me next month would be time for me to have scans again and as long as it is working and my white blood cells don't get any lower she was not going to drop me down. The week you are off your blood counts should come back up, or mine has always the week I don't take the Ibrance.
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