Verzenio and letrazole

[Candu5]

Hi Ladies!

Diagnosed with MBC in Oct.2019.

Cancer in lymph nodes near lungs

I have been on Verzenio and Letrazole since January.

Great results!

CA 27-29 went from 184...170...119...84...78....just did bloodwork yesterday so waiting for results.

CEA 34...20....13...7.....waiting for results from bloodwork yesterday.

I have had no side effects from either until now......I feel blessed.

Watery eyes...not a big problem but more of a nunance.

Systane and Lumify seem to help.

I learned yesterday that my WBC is too low.....2.4.

ANC is critically low......0.90.

My oncologist is taking me off Verzenio for 1 week to see if my WBC and ANC get higher.

If they do then were going to drop the Verzenio dose from 150mg to 100mg too see if I can maintain good WBC and ANC numbers.

[Hidden]

Those are good numbers overall. Some times my neutrophils and WBC are low but I feel well otherwise thank goodness. Diagnosed June 2018.

My oncologist lowered my Ibrance to 100 mg due to fatigue 6 months ago. She monitors my monthly CBC and doesn’t worry too much about WBC since it remains relatively stable.

Everyone is different of course but my experience at 100 mg might be useful for you to know. Good luck.

[Hidden]

After being taken off Ibrance after only three months, not because of progression, but because of how sick I got on my week off and an infection flaring up so bad, I required surgery which took four months recovery without the Ibrance.

I was then put on Verzenio, first the 150 mgs, I stopped after two weeks, and then the 100 mgs. and that too had awful side effects with me, and finally she put me on the lowest dosage which is 50 mg. twice per day with no breaks in between.

That was the key. I was able to maintain a normal sense of my life again and did not fear, like I did with Ibrance, my week off.

So far so good on the lower dosage for me and I do not feel the fatigue I got from Ibrance of the higher doses and I have much better control over bowel movements which were horrific for me on the higher doses to the point I felt scared to leave my apt. and go outside because something as simple as a cough could use me to have a bowel movement unexpectedly and that was not pleasant at all.

I have to say so far I am happy with the 50 mg. of Ibrance the big difference between the 150 mg. dose and 100 mg. dose.

But everybody is different with different meds and have different experiences. I found many women who felt the same on their week off of Ibrance as they did on it, and others who felt more energetic on their week off and then others like me who their week off was the worst.

I hope you and your onco find the right dosage that works best for you. It may just be a simple case of lowering your dosage. Good luck. (I also get falsodex injections once a month).

[Zebra2018]

I want to share my experience with restasis. My eye doctor prescribed it for my dry eyes on September, I used it for 2 and half months. My ANC went down under 1 both months. I read about restasis and found out it’s main ingredient is cyclosporine which is chemo! I talked to my onc and he said oh, it is local chemo! But I stop using it(it wasn’t helping anyways)! However my November test was ok and ANC went over 1 again. This is something to think about!

[Red71 in reply to Zebra2018]

I use Systane for my dry eyes which seems to work well. It’s just a lubricant. They have a ointment that you can use at night and using it seems to work all day. It makes your vision rather blurry so you have to use it right before you go to bed.

[Zebra2018 in reply to Red71]

Hi Red71, I am talking about Restasis not systane. Restasis is a prescription only and very expensive eye drop.

[Red71 in reply to Zebra2018]

I understand that they are not the same. I was just saying that if dry eyes are your problem, Systane is something over the counter that is safe to try.

[Zebra2018 in reply to Red71]

That is what eye doctor prescribed. Apparently it increases tear production. Didn’t help me!

[Candu5 in reply to Zebra2018]

Zebra,

Very interesting!!

The only side effect that I have being on verzenio and letrazole is watery eyes.

My eye doctor gave me at least 5 different eye drops to try.....none worked.

My ANC was 1.69 on Jan.24th.

I tried systane lubricated eye drops which contains polyethylene glycol....I googled that and it says it is a liquid form of cyclosporine!

I was tested yesterday and my ANC was 0.90.

My WBC also dropped from 3.9 to 2.4.

I have to be off verzenio for 1 week and and be tested again...hopefully my WBC and ANC will be higher.

I am NOT going to take any eye drops to see if these eye drops are making my numbers drop.

Thanks for your information.

Candu

[Red71 in reply to Candu5]

Where did you find the info that polyethylene glycol is a liquid form of cyclosporine? I tried to find that information and couldn’t. Polyethylene glycol is used in Mirilax as well. It is said to be safe for medical use.

[Candu5 in reply to Red71]

ncbi.nlm.nih.gov/pubmed/152...

This is what I found.

If I am incorrect please accept my apology.

[Red71]

I agree. And I don’t want anyone to abandon something that might work for them...Systane or Mirilax, because of incorrect information.

[Red71]

I do take opioids but discovered on my recent trip to Maui that a spear of pineapple daily kept me from getting constipated. I’m happy to eat pineapple daily if I can!

[Hidden]

Hi Candu5,

What great response you're having to treatment! That's fantastic (esp. the CEA...wow!!)

I just want to mention, to the community, really, that different docs and patients handle low counts differently and it's not always cause for alarm. My ANC's have topped 1000 maybe 3 times in the past 5 years. The average is about 800 and I've not gotten sick, not even a cold (although clearly I've been exposed because every once in a while I feel myself fighting something off). I did push my doc, early on, to let me continue with the 125 Ibrance after the first low reads, so now we're both okay with them.

My labs from earlier this week showed 800 ANC's, and 1.4 on the WBC's. I know those are fine for me. My platelets came in quite low.... .81....which is mildly worrisome, but I did labs on the first day of break, which I suspect is the very lowest point in the cycle (I usually do them the last weekday of break week). If my scan results today are okay and I can continue on my current treatment, I'm thinking my doc might suggest a one week additional break from Ibrance (her nurse had phoned me about the platelets to see where I was in my cycle). If this is the case, I'm going to ask if we can do labs again today (as much as I'd hate to!) to see if the counts are back "up" to my typical range at this point in the cycle...

I'm definitely not second-guessing your/your doc's decision....everyone is different plus, again, reduced dosages of some of our meds seem not to reduce efficacy. I just wanted to let others with consistently low counts know that this is not necessarily something to worry about too much.

Again, I'm so glad for your fantastic response to treatment! Wishing you many good years on it!

Take care,

Lynn

[Candu5]

Thanks Lynn for your thoughts and best wishes with your regimen.

[Candu5]

Read my info.