Low blood count: I was diagnosed with... - SHARE Metastatic ...

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Low blood count

Gmaoftriplets profile image
40 Replies

I was diagnosed with stage 4 April 2017,never had breast cancer before, stage 4 at initial diagnosis. Have been on femara and ibrance,after my most recent blood test my MD is keeping me off of Ibranace for a week until my WBC come up and will only be taking the femara. Has anyone else had this issue.

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Gmaoftriplets
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40 Replies
nstonerocks profile image
nstonerocks

This is pretty common. Happened to me first month. After that I bounced back although counts low but good enough to stay on Ibrance. Your doctor may adjust your dose depending on your counts.

Gmaoftriplets profile image
Gmaoftriplets in reply tonstonerocks

Thank you this has been quite the journey.

nstonerocks profile image
nstonerocks in reply toGmaoftriplets

Oh yes. It turns you upside down and inside out. This board is wonderful. You can vent, ask for help, or share the good and bad news.

Gmaoftriplets profile image
Gmaoftriplets in reply tonstonerocks

I see that you have flown since your diagnosis, we are flying tomorrow to go see family in Branson Missouri,, I am very nervous. My oncologist said it was ok and just be careful. Even though I feel great I'm still nervous.

Clair19 profile image
Clair19 in reply toGmaoftriplets

Are you nervous because of germs? If you feel great I think you will be fine. Since my wbc so low I have to wear mask right now. Ibrance stronger than I thought! Just make sure you don’t forget medicine 😁 Have a great time! We fly out of Atlanta in June so I pray I’m on track by then. Enjoy 😊

PJBinMI profile image
PJBinMI in reply toGmaoftriplets

What is it about flying that makes you nervous?

nstonerocks profile image
nstonerocks

I have flown so much since my diagnosis. Europe and the Caribbean. Traveling is so liberating The meds come along but the Cancer stays home. Drink lots of water and move around the cabin frequently. Most of all enjoy!!!

Gmaoftriplets profile image
Gmaoftriplets in reply tonstonerocks

Thank you,that means so much to me to hear you say this,it puts my mind at ease.my last PET scan showed no evidence of cancer, I still have my tumor but it has shrunk a lot since diagnosis. You have given me words to live by when you said the cancer stays home..so true I can't let it control my life..again thank you..I am donhappy I found this site..

Jerseygirl45 profile image
Jerseygirl45

I also was diagnosed stage 4 right away. Ibrance made count low,went off 1month. Count is still low but ok. Travel all the time. 5 cruises since disg in 2016 even drive to keywest. Go have fun, there are meds that will keep you going for years. Enjoy them.

Gmaoftriplets profile image
Gmaoftriplets in reply toJerseygirl45

Thank you..that means a lot..

Metastic profile image
Metastic in reply toJerseygirl45

I agree I was diagnosed with met breast cancerto lungs stage IV now on ibrance 75 mg and teva-exemestane two weeks on one off I leave cancer at home when I am out feel myself. travelling next month looking forward to it when tired I rest keep going everyday everyone do things that make you happy even if you do not want to somedays 💋❤️Good luck like your positive attitude

SeattleMom profile image
SeattleMom

I had same experience after starting on both meds in December 2017. Might help to add some immune-boosting supplements to your diet to keep the WBC's in check. Good luck, Grandma of Triplets (lucky you!!!) Can't wait to be a grandma myself!! XO Linda in Seattle

Gmaoftriplets profile image
Gmaoftriplets

My daughter has 9 yr old triplets and an 8 year old..they keep me busy and my mind off the cancer..

Boogitymom profile image
Boogitymom

I also was diagnosed at stage 4 right out of the gate, had a negative mammogram just 6 months prior to diagnosis. Some days I still can’t believe it. As others have said it is common to have low counts. I have been on the same regiment for 26 months, my counts were terrible in January 2017 and we talked about taking me off but then my counts in February were better so we stayed the courses. Many twists and turns on this journey.

Mcap profile image
Mcap

I am also stage 4 from the start. Mets to lung. February 2018. I had to take a two week break from ibrance between the 2nd and 3rd cycles because of low wbc. I was allowed to start back with 125mg. Hopefully my numbers stay up. This sounds like it happens a lot. I had been worrying alot about picking up germs but if you want to live i guess you have to let that worry go. Glad to hear your tumor has shrunk. For me that has been one of the hardest things to deal with. I know it's early in my diagnosis but I just want it to shrink so bad. The lung mets I can't see or feel but the breast tumor is a constant reminder of the cancer.

Clair19 profile image
Clair19 in reply toMcap

Hey, I to have rt lung Mets. Not in Breast . I have scar tissue in breast but biopsy showed no cancer. I had a reduction 2 years ago and he saw no cancer. May I ask is it in one lung? Thanks.. And continue to try and stay positive. This board is great for helping out and making you feel better!

Mcap profile image
Mcap in reply toClair19

I have 10 to 20 nodes in my left lung. The largest one was 9 mm and was biopsied. Should have my first scan in mid May. Hoping to see some improvement or at the very least no progression. I see where women are having good results with ibrance when they have a reoccurrence. How long have you been in treatment?

Gmaoftriplets profile image
Gmaoftriplets in reply toMcap

It will be a year in May..feeling great so far,the fatigue can be tough since I'm still working full time.

Mcap profile image
Mcap in reply toGmaoftriplets

I am working full time too. The fatigue can be hard. I'm trying walk my dog after work just to get some exercise. I've heard that exercise helps with the fatigue. Glad to hear your feeling well on ibrance after almost a year.

Clair19 profile image
Clair19 in reply toMcap

Hey I started treatments last fall IV Doxil till this month. Ibrance really got my Neutrophils count to 500 very dangerous. So I’ll stopped as he recommended. I only took Ibrance for 3 weeks. Hey what works for some might not be for me. You will probably be fine. Your nodules are small. I don’t have that many but mine are larger not all cancer. My largest is 1.7cm small 5mm. They have stayed stable since last June. But I have small amount of Plural effusion so I get out of breath when walking, I just rest and it gets better. I hope you have fantastic results on Ibrance. Keep in touch. Thanks

Mcap profile image
Mcap in reply toClair19

I will, please let me know how you are doing too. You don't hear about many people having lungs mets. Glad yours are stable. May I ask where you primary tumor was? Was this a reoccurrence of your original breast cancer?

Clair19 profile image
Clair19 in reply toMcap

Hey, yes 17 years ago I had stage 2 breast cancer. Then last year I started having trouble breathing when working out. So they found in rt lung nodules they think due to radiation scaring turned to breast cancer. Yes I have been talking to women that it’s in both lungs. Not all my nodules are cancer. I’m Her2 Negative. My Mom had same Mets. I’m stable since last June, so I’m glad for that. I also have it in my spine. Lung, liver, spine and brain are the most common mbc spots. Being a Nurse I always kept checking but I let my guard down. Good luck with your journey and keep in touch.

Clair19 profile image
Clair19 in reply toMcap

Sorry the bones are the most common. But it goes usually bone, brain, lung, liver and of course other spots. It is not in my breasts. They think it went from spine to lung. My left lung is fine. This one lady has 10-20 nodules and I pray for her. Mine are small some only 5mm. One Scan thought it was not cancer in lung. They also said it was in breast, but scar tissue not cancer. I never had biopsy to spine only lung which showed some cancer and some not. My liver cleared up and shows no more disease. But unfortunately lung is common for mbc.

Clair19 profile image
Clair19 in reply toMcap

I went back and read your post. You had the same amount in lung as a friend of mine. I will pray for both of you. I’m glad yours are small also. She is doing great on Ibrance. You will too.

nstonerocks profile image
nstonerocks in reply toMcap

Mcap, My oncologist asked the breast surgeon to remove the lump. She said there was no point having it stay in my body, and the chemo would go where it was needed. Some doctors use the lump as an indicator of how treatment is working, but why would you leave a cancerous tumor that can be easily removed? Ask your oncologist. My scar is ugly, but the lump is gone.

Burgerde profile image
Burgerde

Yes. This is very common. I am stage 4 also diagnosed 9/17 after being cancer free for 10 years following stage 0 breast cancer and a lumpectomy and radiation. I finished 3 months of IV chemo and then was put on Ibrance and faslodex and first round had to stop after 2 weeks and took 3 weeks off it to come back enough. Switched to Verzenio which is same category of drug as Ibrance but is better with dropping WBCs. My counts still dropped but just above level I would have to hold med so I am hopeful. It can take some time to find right drug and dosage for each of us. Hang in there. Ibrance is still considered a chemo drug and this common.

blms profile image
blms

Yep, your doctor has to find the right dosage for you! I have been on Ibrance since January and I am still not sure what my dosage ongoing will be. I began on 125 with low neutrophils that did not rebound as quickly as they should have, then finishing my second month of 100. I am still not sure that I will not be 75. I will know in the next month if not before

Clair19 profile image
Clair19 in reply toblms

Thanks 🙏

Clair19 profile image
Clair19

Sounds like this is common. 75mg probably will be better for me. Good luck with your blood work! Thanks made me feel better.

LIMEHOUSE3 profile image
LIMEHOUSE3

Hi, I am on inbrance and Renata and I have had d the same problem. I have had to stay off of inbrance for an extra week and this is my second course and I will be off of it another extra week this time. They think they will drop me from 125mg to the 100mg. It seems to be a common thing until they get the right dossage. Stay positive.

Clair19 profile image
Clair19 in reply toLIMEHOUSE3

Hey yeah I’m on 100mg now. So since my Neutrophils at 500 is extremely low. Normal 1.500- 8.000. So 3 weeks off and hair gets thicker 🤗. Since my nodules are still stable since last June I hope I will be fine. All I can do is pray and stay positive. What is Renata? I’m thinking a hormonal reduction med. Thanks for responding...

LIMEHOUSE3 profile image
LIMEHOUSE3 in reply toClair19

Hi it should be femara but my tablet changed it.

Dianne417 profile image
Dianne417

Hi, Gmaoftriplets! You are not alone. This problem is quite common. Ibrance can definitely take a toll on your WBC and there is nothing wrong with taking a break from it every now and then. Someone who posts on this site was having a similar problem and said that her doctor was putting her on a one-week on / one-week off schedule (as opposed to three weeks on and one week off) until her counts come back up to normal. I don't know if this type of regimen could be helpful to you, but it might be worth hearing what your doctor thinks. Good luck!

Clair19 profile image
Clair19 in reply toDianne417

Yeah I might have to do something like that. I had just started my first 3 weeks. Now 3 weeks off to get up counts. I stressed out feeling depressed, but figured how stupid that was. I feel better my skin even better now. Since my nodules have stayed stable since last June I think I will be ok for 3 weeks. Thanks for responding and I hope you continue doing great!

Dianne417 profile image
Dianne417 in reply toClair19

Great, Clair19! I'm glad things are going better.

Gmaoftriplets profile image
Gmaoftriplets in reply toDianne417

Thank you, my doctor had me redo my blood work 3 days later and everything was in the normal range so I'm back on the ibrance

Dianne417 profile image
Dianne417 in reply toGmaoftriplets

Good news, Gmaoftriplets! I hope your counts continue to stay in the normal range. Congrats!

Lamho1 profile image
Lamho1

I'm stage IV mets to lymph nodes & lungs. Been on Ibrance /Letrozole combo since 9/16. I did take an extra week off a few times to get my counts up as they were as low as .03 dangerous low wb cell count. I bounced back & on month 20 I was told I'm in remiission. Last week I went in to on due to bad fatigue & bad rash on chest & abdomen. I now am taking a month off maybe more.

My counts are at 3.1 neutrophil

And antigen at 22. So ibrance .75mg Continues to work for me.

I'm hoping to stay off a few months before resuming, we'll see.

mariootsi profile image
mariootsi in reply toLamho1

Good luck. Enjoy your break

mariootsi profile image
mariootsi

From what I'm learning many women experience this!

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