Cell count.

[Birdee]

I'm on Pablo does any body know how badly it trashes your immune system..My Onc only needs to see me every 3 mos due to the stability of my bloodwork. My bloodwork has always been ok and l believe my GP said my WBC returns to low normal at the end of my week off.

[Teddielottie]

I’m on Palbo too! ( I’m in the U.K. too and that’s what my onc nurses refer to it as ). And like you , my bloods return to low normal at the end of my week off . However , my onc has insisted on me continuing to have my bloods checked monthly during lockdown . ( currently at my GP practice) . Maybe it’s because my tumour markers have never changed and can’t be relied upon as an indicator , or even maybe after 32 cycles of Ibrance (125mg) , there is the chance of me nearing the end of this first line treatment based on the current average efficacy of this drug ? But hoping not ! I know there are ladies on here who have gone well beyond ! Fingers crossed !

The good thing is to date I have rarely become ill while on palbo / Ibrance (just a very bad cold with a too high temperature last Autumn , but before the current pandemic!) . I was even allowed to have a breast reduction op on my left non- affected side , a year ago , while on the Ibrance / Letrozole protocol ( but my neutrophils had to be above 2 ).

But just be extra cautious in the lockdown and take care when out ( mask and sanitizer when close to people and lots of hand washing !) X

[Birdee in reply to Teddielottie]

Thank you for talking to me stay safe.

[Hidden in reply to Teddielottie]

Hi Teddielottie...

Your response led me to call up the Meyers-Kaplan PFS chart from the original Pablo+LET study to confirm or correct my recollection...

...The curve on that definitely flattens as time goes on. So if you've remained on it for 32 months (good for you!!) the odds are extremely high that you'll last to 36 and VERY high that you'll last to at least 40. That's where my chart ends, though (again, from the original study)...So you might want to search for a better/newer one.

When I was doing this combo (lasted 40 months, after several months on just Letrozole, and even at that , not sure I really needed to change (whole dif story), I kept reminding myself that each scan you get through decreases the odds that you'll have progression at the next scan.

p.s. I also remained on 125....am still on it, more than 5 years in, although my neutrophils are usually below 1).

Wishing you many more YEARS on that great combo!

Lynn

[Beryl71 in reply to Hidden]

So how long have you been on palbo and letrozole? If the cancer markers keep going down, do you you just carry on once it gets to normal? And keep your fingers crossed.....

[Hidden in reply to Beryl71]

Hi Beryl,

I was on Palbo+Letrozole for 40 months, after a few months on just Letrozole (Palbo had just been approved), then I sort of had progression (long story, with regrets) and changed to Faslodex + Palbo, which I've been taking for almost two years (even easier treatment than the Let + Palbo).

You don't stop treatment if your markers go down (in fact what you do is say "thank you" to the pills each day before you take them! :). With what we've got, we'll likely never not be taking some treatment...

The tumor markers are sort of squishy info...There's a lot of debate about them on the site, and a bit even in the medical community. It seems that for some people they're very accurate (I'm one of those) and for others they are meaningless (e.g. my sister). I'm not sure if there's a way to know who it seems to be accurate for vs. not; e.g. my sister has sort of gotten one tumor at a time (with long spells of NED in between) and her markers have never risen above normal. I have widespread bone mets, so I speculate that maybe these cause a more measurable response (i.e. the tumor markers that measure antigens)? I don't think it's really known, though...

But time will tell how accurate they are for you. But a nice decline after starting a new treatment is certainly a good sign!

Wishing you continued improvements!

Lynn

[Beryl71 in reply to Hidden]

Thank you, I know it will only be progress for now and my oncologist has told me I'll be on treatment for ever. But I'm just pleased to be feeling better.

[Teddielottie in reply to Hidden]

Thanks for that info Lynne ...I always try to stay quite positive , but seeing a number of ladies on here having to move on to their next treatment recently, it’s made me realise , not only how fortunate I have been on the Ibrance , (30 months plus) , but also the realist in me , says that it does come to an end sometime , and then I will place my trust in my onc to tell me my next treatment . Just hoping that’s a while yet !

P.s. Just had my bloods done ...Neutrophils 2.2 and wbc 3.6 (at the very end of my week off Ibrance)...my neutrophyls have so far not dropped below 1, so I have stayed on 125mg and not had to take time off Ibrance .

You’ve done amazing at 5 years on it , and I wish you more ! x

[Julie2233]

I was on palbo (ibrance) and faslodex for 18 months. My neutrophils dropped and stayed at around 1.6. I had several bad colds while on it but I was absolutely fine, they didn’t cause me any problems apart from the discomfort of a cold.

[Hidden]

I'm on lowest dose Palbo/Letro and my whites and Neutrophils are always below normal, but I seem to be doing ok besides the fatigue. My onc us not worried about the lower counts and wants me to continue .

I agree with staying very vigilent around people and I do wear mask and have wipes and disinfecting gel with me at all times.

Stay well!

[Beryl71 in reply to Hidden]

And is this during the virus or always you've done this. ?

[Hidden]

Hi Birdee...

I've been on Ibrance/Pablo 125 for more than five years...And while my counts are certainly low (typically .8 (800?) on ANC's and 1.7/1.8 on WBC, I really don't think that my immune system has been horribly affected (somehow?). I've not gotten sick this whole time, not even a cold. So I keep thinking there must be more to the immune system than just those two measures?

Also, my onc mentioned that the low ANC's in BC patients have not really resulted in the poor immune systems that they feared...Again, not sure how it all works...

Honestly, if I were you, I'd not worry about it too much. Of course be careful, especially with the virus, but I'd hate to see anyone let this affect their lives more than it needs to...

Be well,

Lynn

[Beryl71]

Tell me about your daily juicing. I'm early days into this and doing my best to eat and drink as healthily as possible. I'm on 125 mg.

[Hidden in reply to Beryl71]

Hi Beryl,

I hope I am not butting in as your question was directed at Sandra, but I just thought I would mention that if you want to start juicing you might want to take a look at Kris Carr's website for some ideas.

kriscarr.com/

She has been living with metastatic cancer for more than 17 years. There are some great recipes on her website, which you might want to try.

Sophie

[Beryl71 in reply to Hidden]

Thank you. I'll have a look. X

[Dancer1000 in reply to Beryl71]

I'm in 125mg also. I believe after researching (Radical Remission, Heal Breast Cancer Naturally, Chris Beat Cancer etc.) that they key is to radically change your diet so that it works for you like you are training for a marathon. Our bodies have to be strong enough to withstand the side effects from the drugs and to also heal and strengthen the immune system. Keeping stress at bay as much as possible, exercising and practicing whatever mindfulness and spirituality that works for you is a big big help also.

[Beryl71 in reply to Dancer1000]

I'm happy to go along with that. I'll pick up any tips here I can. Thank you.

[Red71]

I’ve been on Ibrance 75 for 24 months. I have not been sick once, even being around young grandchildren. If they are sick my sons usually warn me off but I have picked them up from school (preschool and first grade) when they have been sick and mom or dad couldn’t get away from the hospital. My neutrophils are always about 1.2-1.6 at the end of my week off. I’m careful and wash my hands and avoid snotty nose kisses, but I’ve pretty much lived life like normal until Covid came along. Since all my children and daughter in-laws work near or with Covid patients, I have avoided seeing them for a while, but have made the decision that the grandchildren are worth the risk. I’m not willing to give up any more of the precious time I have with them to the fear of the virus. You will get used to how you feel on it over time. Good luck. Elaine

[Beryl71 in reply to Red71]

Thanks, I'm on a higher dosage but am pleased to feel so much better than before treatment started. Yes I think it's about being careful but not wasting your life!

[KMBL_ in reply to Red71]

I’m glad I’m not the only one willing to take the risk. I haven’t stopped seeing my grandson and daughter and son-in-law. They are the only ones I said, Nope, I can’t give you up. It’s my choice to see them, and they understand.

[Merma]

Hi Birdee,

I’m taking 125 Ibrance and an aromatase inhibitor for recurrent endometrial cancer. I’ve been taking it for 2 and ½ years. Mostly my neutrofils are fine, but wbc and hemoglobin are usually low. Mostly my platelets have been fine except for the last two months. When they were all really low in May, my onc had me take an extra week off.

I have to have my port flushed every month, so I get a blood test at the same time.

What I want you to know is that I teach 2nd and 3rd graders and do both competitive swim and synchronized swim workouts and I am rarely sick. My body even seemed to adjust to being anemic.

Staying active and resting when I need to has really helped me.

[Birdee in reply to Merma]

Thank you for taking the time to answer me.

[Totheriver]

I could not take the 125 ibrance. Tried for 6 months but needed breaks and was hospitalized. I have been on 75 ibrance and letrozole now for 6 months and am tolerating ir quite well with the exception of getting UTIs. Does anyone else have issues with that. Also has thinned my hair so much that I am going to get a wig😢

Hope it keeps working for you🙂

Theresa

[Merma in reply to Totheriver]

Yes, I got UTIs early on. My internist recommended that I take cranberry supplements. I got the CVS brand “Super Strength” 500 mg and take one daily. It’s been 2 years and I haven’t gotten a UTI since. Hope this helps.

[Totheriver in reply to Merma]

I have been taking a cranberry supplement for the last 6 months and still had 2. Maybe this will be the end of it🙂

[Merma in reply to Totheriver]

I hope so. UTIs are no fun. Good luck with that.

[AvidBooklover]

I have been on Ibrance 100 for a year...dropped down after 3 months on 125. I had a cold in late Jan that hung around on and off til March. Got what we presume was Covid-19 in mid March (work in NYC and closed the office on Mar 11th. Mar 12 one staffer had a fever. Mar 14 I got sick. Was sick two weeks and three weekends. Could not get tested as my cough was wet, not dry. Had other symptoms that have now been attributed to it. My son was sick too. Worked from home every day, except one. Tested positive for antibodies two weeks ago. My son also tested positive. My husband who was here the entire time and never social distanced never got sick and tested negative for antibodies. Only stopped Ibrance when I had what we now think was Covid. I think I just extended an off week a couple more.

[Red71 in reply to AvidBooklover]

I’m so glad that your bout with Covid was a mild one! We hear so many stories of people getting it and having it linger forever, or being sick enough to be in the hospital. Thanks for telling us about it. Elaine

[AvidBooklover in reply to Red71]

EXACTLY....and I was on Ibrance and my resistance was low and I still recovered quickly. It is not ALL doom and gloom. I have a LOT of energy. My husband said that those weeks I was like normal people! Very funny. Also, I was able to work...and did three big video interviews. BUT there was a LOT of time on the couch with a remote in hand! When I got energy back my husband and son encouraged me to return to the couch...instead of coming up with things to do for them!

[hdhonda]

Hi Birder,

I am in my 3rd week of 39th round of Ibrance (125)/Letrozole. My neutrophils stay between .8 and 1.2. Oncologist says I can go as low as .75. I tire easily and I do have some hair thinning but otherwise do fine on it. See oncologist every 3 months and have blood work every six weeks. Probably wouldn't have blood work that often since they stay stable but my port has to be flushed. I shouldn't have a port but the thoracic surgeon and I believed it was lung cancer in my lungs rather than breast cancer and put port in for IV chemo. We were both shocked when it turned out to be breast cancer. I wish you the best. Blessings Hannah

[mariootsi]

Glad to hear about your success on your treatment and your bloodwork recovery on week off!

[Birdee in reply to mariootsi]

Thank you so much. Your very kind.

[Dancer1000]

I just started Palbo/Letrazole last month after 12 weeks on Taxol and I was terrified of the possible side effect about lung inflammation but it seem to be going ok. Two days after starting I had a very scary reaction (chest pain, confusion, dizziness, wheezing a bit) and stopped. Restarted with just letrazole for a week and then added the Ibrance again per oncologists direction. Seem to be fine now although I have been experiencing some real upper jaw pain and I wonder if that is the medication or I just need to go to the dentist! Also I juice daily and take immune boosting herbs/supps. Its very comforting to read all the stories about good experiences for a length of time while on them. Gives me hope!