Ibrance and Infection protocol?

[JeniMcC]

Hi Lovely People, I searched for “Ibrance and infection” on the board and found a few threads, but none that discuss this problem in depth. I’ve been on a lower dose of Ibrance, 100 mg, for 6 months now, 125 mg before that. Side effects were too extreme—pain, exhaustion, etc—so my oncologist lowered the dose for quality of life reasons. In total, I’ve been on it for 1 year plus monthly Xgeva shots and Letrozole. I started this last cycle 18 days ago with low neutrophils for me, 1.1, and have felt badly neutropenic this entire cycle, with less energy, shortness of breath, etc. I’m always careful about staying in and avoiding people, but yesterday, despite my being careful, I started to get feverish, with chills and muscle pain, with a temp of 100.3F/37.9C. Temperature has returned to normal today after an uncomfortable night. If any of you has experience with dealing with neutropenia fevers (or infections) what was sick care the protocol you followed? I sent a message to the on call nurse, and won’t be able to reach an oncologist until Monday. I can’t get labs without an Emergency Department visit (where I definitely don’t want to be during this pandemic peak). Hospitals here in New Mexico, U.S., are full because of COVID-19 patients. Since my symptoms are much better today (normal temp, no pain, no chills—just tired). I’m responding well to rest, hydration, and am observing my vital signs like BP, HR, O2 saturation and blood sugar levels. All are normal. So, I haven’t gone to Emergency, and am not taking my last 3 days of Ibrance in this cycle to help fight infection, if any. Any experience you have with neutropenia and fever or infection would be helpful. Thanks!

Many Blessings,

JeniMcC

[13plus]

Hi JeniMc, I hope you’re continuing to feel a bit better. I can understand your reluctance to go to ER these days but be mindful to keep monitoring yourself well. It might a good idea to go and get a covid test, just to rule that out.

[JeniMcC in reply to 13plus]

Thank you, 13plus. I got labs done today, which looked good to my oncology team and my symptoms are much better. I asked for a standing lab order just in case this happens again on a weekend. I am scheduled for a Covid test as well. Thanks for your reply. I will keep you posted.

[13plus in reply to JeniMcC]

Glad to hear all seems well! These things always happen on the weekends!

[Goldenhair]

I don't want to give advise either. I learned from school and education keeps changing so I'll stick with what I've experienced. I am taking Ibrance too.

My tumor is festering on what is left of my left breast and a connecting slit under my left arm. I went to a breast surgeon and she did nothing for 4+ months other than take biopsy's and do observations without an pain medicine. I figured before I got on chemo and my skin turned so it couldn't be operated on she would operate. Instead, my breast turned black, red and blue under her care. Then, she said during my last visit, she'd see me in 5 months. Into my 4th month I went to her to relieve the pressure whereby she cut an opening and bled the wound and put a bandaid on it.

Logically thinking, I thought I would go to a wound care doctor. When I went, he asked what my breast cancer and oncologist have done. He didn't suggest or do anything. (I am guessing here but I think he's not skilled in cancer patients or want to take such a wound on.) My oncologist gave me pain pills.

To date, the scab that has formed, had started to smell, so I clean out around it where it had separated from my skin and applied triple antibiotic ointment. You can buy that over the counter and I learned to use that after being operated on, before I got cancer the first time.

I'll be going to my oncologist to figure out what the next step is as I'm tired of and open wound. I don't know if any of this helped. Again, I wrote this is what I have experienced.

I wish the best for you! -GH

[JeniMcC in reply to Goldenhair]

Hello Goldenhair, It sounds like you are dealing with a lot regarding Ibrance and infection. I feel for you. It also seems that the team should be following you with more intensity to me. Have you spoken with a palliative care team about this situation? Or can they send you for regular wound care? I have a friend in a similar situation to yours, with a similar wound showing along the mastectomy scar. She lives in Houston and is at MD Anderson. She also has MBC. They admitted her, she went through wound care and a round of I.V. antibiotics and is healing well. I do appreciate your response. It gives me an idea of the disparities in how infection may be treated or managed. Please continue to keep us posted. It’s important that we support each other.

Many Blessings,

JeniMcC

[Goldenhair in reply to JeniMcC]

Hi JeniMacC, Thank you for your reply. The nurse practitioner who I spoke with earlier today suggested I see the wound specialist but I reminder her he did nothing for my wound and I will not return to him. So she will contact a wound specialist in a city 30 minutes away. The NP called back to say that I will have a video chat with my Oncologist tomorrow so she can see the wound. I live an hour and a half from my O's office so sometimes it's easier to video chat. I'm not swollen, don't have pain, and as I've stated before the wounds been cleaned around the scab but it just drains clear liquid and smells. Fingers crossed that this will quit draining. My best to you, -GH

[blms in reply to Goldenhair]

May sound crazy but my cousin who has breast cancer spread to her skin and scar is using cod liver oil rubbed all over it, old tea shirt on top as it can stain, and then a heating pad or whatever you choose with heat--every night--she sleeps in hers. What she noticed was that at very beginning it bled a bit but then the rash and all that goes with it subsided quite a bit. I don't have that issue with my cancer but it might help.

[Beryl71]

I had neutropenia with an infection and had antibiotics, but came off those before course was complete because of all the side effects. At following blood test I was too low to continue ibrance and had an extra week off. I have since had a kidney infection which in their words , was probably related to the last infection , which hadn't cleared. This time my temp was 38 and I had developed bad kidney infection. My GP sent me to hospital.

My card says temperature consistently over 38 or several over 37.5, seek emergency help.

I was also taken off ibrance whilst I was on a long course of antibiotics this time.

So I think the key issues are to seek help with consistently high temp, to make sure your infection is identified and cleared and check whether you need to come off ibrance for antibiotics to be effective.

When I left the hospital they did suggest going straight there in future. Our emergency ward is in a different place to covid admissions and I was tested every day for Covid. They seemed pretty careful.

Hope you soon feel better, don't take any chances. X

[JeniMcC in reply to Beryl71]

Hi Beryl71,

Thanks for your experience. Fortunately, my temp went down in a few hours when I had it. I asked my oncology team when they opened on Monday for labs, which came back with neutropenia, but not lower than my lab work before starting my cycle 21 days ago (1.1). This is low for me. Labs didn’t indicate infection, so they’re saying to keep close watch on any symptoms and to go to emergency ASAP if symptoms return. I see the team in person on Tuesday as well. It’s a precarious place to be with infection and Ibrance. I feel that I’m still trying to sort out symptoms associated with the medications versus emergent symptoms after more than a year on Ibrance and Letrozole. Just trying to stay well, to make sure my team is informed and to not freak out (or to take appropriate action in an acute crisis)—all while dealing with the chronic crisis of Covid—is a real learning curve. Thanks for your words and for your support! I hope you are stable and are done with the infection.

Sincerely,

JeniMcC

[Beryl71 in reply to JeniMcC]

Well I've been called for another urine test to check. Like you I feel everything is so fragile. I felt so much better after a couple of months on letrozole and ibrance and they moved me on to two monthly prescriptions. Since May I've battled with infections and been on monthly meds. I feel very tied down and scared to plan in case it all goes pear shaped! Good luck and keep well. X