Reaction to cancer treatment

[youngfarm]

Five days in. It is brutal. MBC treatment Novartis (PIQRAY) 300mg daily. Side effects almost constantly debilitating. Oncologist says 90 days before seeing any noticeable change. Maybe can continue. Feel like hell.

[Mindysooty]

oh I'm so sorry to hear it's so hard for you. I've no experience of Piqray but is there anything more the Onc can suggest to help with side effects. If you elaborate a little on what the side effects are, I'm sure that the ladies on here will have some good suggestions for you. I hope you find some peace in this challenging time. Sending all my very best wishes to you.

xx Josie xx

[SoCalLady]

I understand Piqray can be very harsh. Are you experiencing rash, mouth sores, high blood sugar or what? Are you on a clinical trial, or are you on a commercial regiment where you can possibly lower your dose?

[youngfarm in reply to SoCalLady]

Recently began with 300mg dosage per Novartis recommendation. If possible to reduce to 200mg, this may soften some side effects. Oncologist explained 3 months on med will be minimum before any indication of effectiveness, So, don't want to reduce dosage now. This not a trial, just most recent attempt at relief from MBC. Experience bone pain, nerve pain, cramping muscles, rash, diarrhea, frequent urination and insomnia regularly. Blood sugar not affected. Too soon to stop since PIQRAY may eventually help.

[SoCalLady in reply to youngfarm]

My onc wants to put me on Piqray but has suggested the opposite, going for the lowest 150 mg, then building up based on how I do

[youngfarm in reply to SoCalLady]

Perhaps this method will be easier on you overall. IDK if Novartis testing has shown better results using specific dosing techniques but there were very strong side effects with 300mg daily.

[SoCalLady in reply to youngfarm]

Hi youngfarm, just started Piqray @ 150 mg. No bad reactions so far, however I really didn't expect any at that low of dose. How are you doing on the regiment? We haven't heard from you in awhile. At least I haven't on my feed.

[PJBinMI]

With side effects that extreme, you need to let your onc know ASAP! Do not wait thru the weekend--call this morning! If you've not had to phone before, ask to speak to a nurse who works with your onc. Be as specific as you can. We just can't afford to wait about things like this. And you are right about response sometimes taking 3 months to show up, but that does not mean that you have to tolerate debilitating side effects. Keep us posted please!

[youngfarm in reply to PJBinMI]

Contacted onc nurse. She's talking with Novartis to see about dosage reduction and how this might skew results. 300mg tuff for me to handle. FDA trials used that dosage, per Novartis.

[PJBinMI in reply to youngfarm]

I hope your onc figures out something for you soon. Have you seen a bc specialist onc? if not , that might be a great thing for you to do. The best cancer centers are those that have been designated "comprehensive cancer centers" by the National Cancer Institute and they have very specialized oncs who both see patients and do research. Often, we patients do as well on a lower dose of the newer meds than is typically prescribed..........

[SoCalLady in reply to youngfarm]

Please let us know what Novartis said about dosage reduction.

[mariootsi]

Oh no! So sorry. Hope you improve as your body adapts.

[Hidden]

Hi,

Having to deal with such debilitating side effects will wear you down if it continues for much longer. You need to be able to sleep so you can function. You should not have to put up with such harsh side effects for 90 days. I hope that you can get some answers from your oncologist about what to do. There must be something you can take to help with the side effects. I hope you feel better soon.

Take care and please let us all know how you are getting on,

Sophie

[Rhwright12]

So sorry...sending prayer!

[Bayb]

My onc has changed my meds from Ibrance to Piqray. I am awaiting approval of insurance. I should get started soon. 300mg is the beginning dosage. Your experience is making me nervous. I was praying for good response. Praying for your relief and healing

[youngfarm in reply to Bayb]

If you have to begin with 300mg, take diarrhea med, Lomotil along with PIQRAY which has been big help.

[Bayb]

Thanks for the tip.

[Mermicorn]

I'm starting mu third month of Piqray, my CA27-29 dropped 600 points in 6 weeks. My doctor has me taking Zyrtec with this, to hopefully avoid the rash. The dry mouth is terrible and I get a mouth sore or two every so often. I'm also having my blood sugar checked every two weeks. So far the highest it got was 142. Trying to watch what I eat so I don't have to take Metoforim.

[needabreakfromcancer in reply to Mermicorn]

You may want to try the Metformin. I have been on it since June 28th and I have had some positive results. It got rid of skin cancer on my stomach, and it may be killing liver mets. I am a borderline diabetic that was diagnosed in 1975. I went to a specialist who did the 8-hour blood glucose test right before they went to the 3-hour testing. He told me that the 3-hour testing was not adequate and that hundreds of thousands of border-line diabetics would not be aware. It was in the headlines of the New York Times, London, on June 23, 2019 that Metformin is the newest drug added to fight breast cancer. "Life Extension Magazine" claims that they know that Metformin can cure MBC and metastatic lung cancer. It MAY help you. They also say they strongly believe that there is a link between diabetes and cancer. I always think about all of those out there that are borderline diabetics and aren't aware of it. I also suspect that Metformin would benefit them. Obviously, I am not a doctor, but so far, it's the only thing I have had positive results with.

[youngfarm]

Am getting meds adjusted to make any further improvements .Body chemistry is all goofy. Legs, hands cramping, fingers as well. Loss of magnesium suspected.