Strange flares?

[WordNerdSharron]

Hi there. I'm wondering if anyone else has experienced what I've been dealing with for the last 3-4 months. (I was on Ibrance (100 mg) and Letrozole, but my CA 27.29 markers started spiking, so I'm off that, taking Letrozole until I'm out, have had my two loading doses of Faslodex and am supposed to start Verzenio soon.)

The situation started around the time we shut down for COVID-19. About once a month, usually later in my Ibrance cycle, I'd spike a nighttime fever ranging from 100-102.5 F. The fever is easily reduced with a single tylenol or Ibuprofen (which my oncologist doesn't want me to take because my liver numbers are messed up, but which my primary care doc suggested to deal with the fever and pain.) The pain is significant and often multi-layered. Sometimes all I can do is huddle under a blanket and try to keep from weeping. It feels like bone mets, joints, and muscles are all involved in whatever is going on. I also have extreme fatigue, mild nausea, and lack of appetite. One episode usually lasts three to five days. I'm just coming out of the worst one yet, so I'm not sure I can blame it on Ibrance. My oncologist didn't seem to have any ideas and sent me to a gastroenterologist, but she didn't find anything alarming and was hesitant to do a scope--thankfully. Next up is a second opinion consultation at MD Anderson with an integrative oncologist.

Anyone had anything similar? Received any answers? I'd be grateful for any thoughts, suggestions, experience.

[MacroMom]

I hope this doesn't sound too reactionary, but have you been tested for COVID? Fever, fatigue, body aches and nausea are all COVID symptoms and some people who have it get symptoms on and off for months. Hope it's not and you find the cause soon!

[Rhwright12 in reply to MacroMom]

My thought as well...It least then u could rule it out and move on to the next probable cause...😀

[Hidden]

All of your symptoms are what I experience with chemo. I have diarrhea also but the exact same symptoms. You said you had stopped Ibrance? Did these symptoms start before you started the new drugs? I would ask your doctor to check the side effects of everything you are presently taking. It really sounds like your body is trying to fight something off but if it comes and goes each month that really doesn’t make sense. Also check food and supplements you may take that are interacting with your meds. There are so many side effects and intersections. 😞

[viennagirl]

Don't know what is happening to you but your doctor should be concerned and check out all the possible reasons that you are experiencing such serious difficulties. I also agree with MacroMom. It sounds like you have a case of COVID 19. It is the most obvious thing because I have been on Ibrance and Letrozole for over a year and have not had those symptoms. Take care and let us know what is happening when you discover the cause. Hugs Marlene.

[klhowe]

I had similar symptoms. Extreme joint and long bone pain. Needed tylenol and ibuprofin daily to function. I could'nt sit in a chair for a prolonged period. I found myself curled up on the bed in pain often. I even tried CBD. It all eventually led to the Ibrance and Letrazole failing. That was only caught after a small shadow in my liver grew 1 cm, then my hemogloben plummited. All of those symptoms resolved after I moved on to Faslodex and Piqray.

[Bubbles001]

I’ve had similar weird symptoms but am on Xeloda chemo and Keytruda immunotherapy. The symptoms have mostly gone away after a few weeks, but I was in bed a lot And am still weak. My fever wasn’t as high as yours, but it kept coming back in the evening and I took Aleve or Tylenol to control it and I have extensive liver mets (which can also cause similar symptoms). I thought about getting tested for COVID, but didn’t as I didn’t have any chest involvement. I am feeling better and I hope you get to the bottom of this. It seems hard for any of the doctors to help in these cases. Made me wonder if I should talk to a palliative care team.

[WordNerdSharron]

Thank you all for the suggestions, shared experiences, and support. I see an integrative oncologist for the first time on Tuesday and am hoping for some possible answers and hopefully some guidance on the integrative/complementary therapies I've been trying to incorporate myself (far infrared ray sauna, supplements, diet, meditation, yoga, etc.).

My oncologist has not recommended a COVID test even after I asked twice about it, so I will ask this doctor. For now, this flare is history, and I'm back to regular activities, diet, and joy. Again, thank you all so much. I am so grateful for this community. I've discovered that isolation can happen fast and be a real problem.

[kearnan]

I had a rough time with Ibrance. My week off was horrible and worse yet, I had just been diagnosed with stage iv so never dealt with chemo, radiation or heavy duty meds. All my onco told me was that food may taste different. The first two weeks I felt normal and thought I am doing okay, then the third week I felt like somebody beat me with a bat. I was taking like two, sometimes 3 hour or longer naps per day. I could not wait for my first week off. My first week off came and I thought I was dying. It was awful. I was in bed the week. I was so so angry with her and I live alone and have no family or friends close by. I was on it for two more months and all three times the week off was awful. Am now on Verzenio, the lowest dosage 50 mgs. (The 150 mgs. and 100 mgs. I could not leave the house bc of the severe diarrhea.) The 50 was the trick and I just occasionally take a nap. You take two per day with no weeks off. The only thing I learned for sure from this board was that nobody feels the same. there were women like me who could not handle their week off, women who felt better on their week off and women who felt the same on their week off as their week on it. I was so so happy to get off it.

[WordNerdSharron in reply to kearnan]

Glad you're off Ibrance and that the Verzenio is working for you.

[WordNerdSharron]

I met with an integrative oncologist this week, and he recommended keeping me on a letrozole and Faslodex treatment plan to see if the Faslodex will help the CA 27-29 numbers come down. He thought adding Verzenio right now would muddy the issue, and we wouldn't know whether any improvements were from the Verzenio or the Faslodex. I am fine with that. I'll just hang on to that bottle of Immodium for later. He also thought my flares were likely just a sign of disease progression but wants to do blood work if/when I have another one. I am optimistic. Had my third dose of Faslodex yesterday, and so far so good (knock on wood). Thank you all for the support.