u/Evening_Dingo8770

Second Lupron shot today. Had it put in my left arm (back of arm) this time. Injection sucked but not as much as last months. Definitely tolerable.
I took Claritin last night and Claritin and Pepcid this morning. So far no bone pain or any other side effects.

I did read that the second injection is when the real menopause effects start to hit. Preparing myself for this.

Sent an email to my oncologist about this ulcerated tumor (exposed on breast). It doesn’t hurt but it is starting to smell more and more. I change the dressing min 1x a day but mostly 2x a day.
Started adding Silver Calcium Alginate between the ABD pads (I layer them) and it has controlled the odor…for now.

Asking if I can get radiation on it to stop the bleeding and odor if it won’t stop me from being able to be on test drug (if selected). It doesn’t hurt. It’s just annoying and smells pretty awful.

Oh…I was told I can start the AI and CK4/6 two weeks after this last Lupron shot.

Visit with my Oncologist Thursday. I was just asked if I'd like to submit to be part of the study for Inavolisib. I read through the documentation (38 pages). It reads

"You are being asked to take part in this reasearch study (also known as a clinical trial) because you have hormone recptor-positive (HR+) and human epidermal growth factor receptor 2-netagive (HER2-) locally advance unresectable and/or metastatic breast cancer. This study is testing a drug called inavolisib.
Your cancer is either already know to have a mutation (a change) in a gen called PIK3CA, or your doctor plans to test for this gene mutation in your cancer to determine whether you may take part in the study."

My oncologist did already test me for this and it came pack positive. I still don’t completely understand my type of MBC. It’s all very confusing. The document goes on to say that you are monitored closely with weekly visits at first, then moving to monthly, etc.

Drug List by Association:

Rejected by Study:
Letrozole (AI)
Zometa (every 3 or 6 month infusion)
CDK4/6 inhibitor (Verzenio)

Accepted by Study but on Placebo:
Letrozole (AI)
Zometa (every 3 or 6 month infusion)
CDK4/6 inhibitor (Verzenio)
Placebo

Accepted by Study and on New Drug:
Letrozole (AI)
Zometa (every 3 or 6 month infusion)
Palbociclib or Ribociclib
Inavolisib (study drug)

Per the documentation:

“Your group will be decided by chance (like tossing a coin). You will have an equal chance of being placed in any group. Neither you nor your study doctor can choose or know which group you are in. However, your study doctor can find out which group you are in if your safety is at risk or to help make decisions about your medical care.”

They monitor those selected weekly at first which is great. Makes sense with all of the side effects. Those who signed up find out in the next week or two if they’ve been selected. Now we sit and wait.

Patient with de-novo stage 4 breast cancer, with bone metastases, planned for systemic therapy, withLupron/AI/CD4/6 kinase inhibitor/Zometa, app scheduled for 5/14/26

Zometa: about 13 hours after my infusion out of the blue I felt like I’d been hit with a ton of bricks. Fever, chills, body aches, sweating, nausea, migraine, etc.

*** I used ice packs behind my neck and between my knees to help cool me down. I took 600mg of ibuprofen. I slammed tons of water mixed with liquid IV. As fast as it hit me, the symptoms left just as quick. I was back to normal by 4pm.
Note: I did feel a bit wonky from 6pm the day of the infusion until the flu symptoms hit the following day at 11am. I’m glad I get my shots and infusions on Saturdays. There is no way I would have been able to make it into work otherwise.***

Lupron: I confirmed with the nurse at the infusion center that Claritin is recommended to help with bone pain caused by Lupron. He said they recommend taking it before you get there for your shot. I was given a Claritin, then received my shot. He said to take the Claritin 5-7 days post injection.
I had the Lupron delivered in the back of my arm. I had the nurse rub the injection site for me for about a minute or so after giving it to me.

*** I had no bone pain at all since having my first injection of Lupron. I had no pain at the injection site either. I think having the nurse rub that cement like materiel into me might be why. I can say that it felt bloody awful while he did it, but I had no pain that night or anytime after the day I received the shot.***

I did immediately pickup Claritin and Pepcid from Walgreens for me to use for 7 days after my injection/infusion day.
Thanks to everyone who posts and continues to post the need for Claritin to help with the bone pain. ❤️