Mind Games!!!!

[Aimee95]

Good morning ladies!! Since diagnosed last year I have been feeling great....totally normal...better than ever...that is until this last cycle. They decreased my dosage to 100mg Ibrance. My off week was rough..for the first time felt like I had cancer.....my body aches terrible, my breasts hurt and severe brain fog. Went to oncologist the 1st and he said it's medication and no big deal. He also ordered my next scans for the 26th. Now I feel like I can feel the cancer eating away at my lungs, breasts and ribs. I know it's all in my head...but I am really losing it here!! My scans in December were great no progression and some tumors are shrinking. I just have this gut feeling this will not be the case next time. I know I am being overly dramatic...perhaps I need to get into therapy. Hugs to all of ladies ❣️

[Semple]

Hi, Aimee95. I am sorry you are having a bad day. I am on my 6th cycle of Ibrance and Faslodex. So far, like you were, I feel great except for a bit of tiredness. Why did your onc decrease your Ibrance dosage when you were doing well with 125mg? On the other hand, some of the ladies here have said lower dosage of Ibrance work as well. We all have our good days and bad days, I hope what you’re feeling is just “a bad day “. I pray you have good scans on the 26th.

Tess

[Aimee95 in reply to Semple]

My blood counts kept tanking and had to come off for 2 weeks then go back on....until March I had never finished a cycle since starting in Sept. I am usually pretty positive and upbeat but now it seems "real" and I have such an overwhelming feeling of fear. Nothing that anyone else has not experienced with this dreadful disease. Thank you for prayers Tess!

[Caring_hubby]

I myself a so called cancer survivor while my wife is fighting her MBC, I have known that there is no alternative to being positive and continuing to do so and never to give up. You cannot change what is in store for you so keep fighting. Best wishes.

[Gwennie123]

It makes us crazy. Irrational thoughts. Signs everywhere. And then there is good news and we become so relieved and normal again. It’s hard to stay rational for very long.

[PJBinMI]

I don't think it is at all unusual to have this diagnosis really hit us hard, and when that happens seems to vary alot depending on so many different things! And we each have a unique set of cancer cells, respond differently to different meds and have our own ways of coping. Because our bodies are all different and our responses to treatment are uniquely our own, the best dose of any med is unpredictable. Drug trials do narrow the dose range somewhat but for alot of us, the exact dose isn't as important as some other things. If the place you are treated has a social worker, that can be a good starting point for talking about your reactions, emotional, intellectual and physical. I was fortunate to find a local mbc support group a few months after I was diagnosed, with stage IV from the get go. I say "local" but it was in the same city as the cancer center where I am treated, about 50 miles from my home. Besides being a great group of women, it got me into a much bigger place with better shopping......lol! I scouted out the book stores, wig shops and found the best make-up counter in town! Books about bc were helpful, since I have a highly estrogen dependent cancer, I've not needed a wig, and a fresh supply of good makeup always makes me feel as though I look my best. But for me, the first year was definitely the hardest! My blood pressure went up everytime I drove into the cancer center parking lot, and I got a knot in the pit of my stomach. Those did get better over time, and now 15 years later, I don't worry much about cancer. I worry more about where to hide my computer's mouse so the cat won't knock it to the floor. Besides a distraction, our dogs and cats have taught me alot about living in the moment! They sure do. Give yourself time.....and I hope you do really well like many of us do.

[Godbeforme]

I was speaking to my specialty insurance, Briova, yesterday and the oncologist specialist lady who handles the medicine and looks up premiums, etc. told me that they have heard wonderful reports from women taking ibrance. I had told her I was considering verzenio and she said the feedback has been tremendous with ibrance being such a good thing, and I feel like I can take that to the bank because the women who do great on it probably don't post to support groups near as much as those of us who are needing information or are suffering. Anyway, for what it's worth, it made me feel better about ibrance. This is through medicare RX so they should have no stake in ibrance. About physical symptoms, it's just insane how the mind works sometimes because I remember the 1st day I took letrozole my toes started cramping up. Then, my left leg didn't hurt anymore after I broke my right leg, right around the hip flexors, they had BOTH been giving me fits but afterwards the left quit hurting completely and I used to have to lift it up into the car with my hands, I had NOTHING done to my left leg, the MBC was in the RIGHT! The other thing is when I started taking letrozole on a reduced schedule, I hurt all over and felt horrible, whereas before I cut down I was hurting all over. As soon as I started taking it everyday at 125 mg. again, I quit hurting almost totally. I only mention all of this because of the title "mind games" because mine has sure played some placebo games and I am astounded as to how that works, for example, when I took my 1st letrozole, I didn't, consciously at least, expect to "feel" anything right away, pain or otherwise; but evidently my subconscious DID! Ok, we are all in this together, so I will humble myself and share this now. <grin> God bless you and heal us all in Jesus name, amen!

[Francesca10]

Aimee

Sorry you hit a rough patch. We can go on totally fine at times then wham- get hit with side effect, another pet scan, etc. The damn mbc dance.

I am going for mri Sunday for my spine where most of the Mets are- the waiting makes me anxious because I have no idea if ibrance/faslodex is working. I am on 75 which is just as effective as higher dose. Hope scans are good results for you. Hang in.

Love

Frances💕🙏🏻

[mariootsi in reply to Francesca10]

Good luck Sunday! I hope for good results on your mri!

[Francesca10 in reply to mariootsi]

Thank you. Its scary.💕💕

[mariootsi]

You aren't overly dramatic. This is such an overwhelming diagnosis!

We all have good days and bad days and some really bad days.

I find the emotional aspect is sometimes tougher than the physical. But what I have discovered is that the terror somehow passes and we start another string of good days!

I hope for more good days for you with peace! Hugs to you

[Have-faith]

Of course our minds go to that dark place thinking the worse case scenario. There can be many other reasons why you are feeling the way you are other than cancer growing! Do you feel any better now? I am sure the 26th can't come fast enough for you, but try not to think the worse. I catch myself too blaming cancer for an unexpected pain or achey feeling when it was something else causing the problem. Hopefully this is the case with you too. Keep us posted on how things are and we will keep you in our prayers while sending good positive energy your way. Faith

[Aimee95 in reply to Have-faith]

I actually do feel better now that I have Ibrance back in my system. Aches and pains are gone and mind is in better place. Thank you!!

[Sunnydaz]

Hi Aimee

Sorry your not feeling well. I had started on 100mg and had every symptom in the book. They lowered me to 75 where I'm doing okay. This week I changed the time I took my Ibrance and it made me so sick. It really threw everything off. Im hoping I stabilize again. I have no energy, body aches, sleeping is off... I'm thinking any change can stir things up.

Robin xo

[MMMP in reply to Sunnydaz]

Do you take it in the morning or with evening meal???

[Sunnydaz in reply to MMMP]

I take it in the morning with breakfast and take letrozole with dinner. Thats what was working for me. That way I can flush it out during the day.

[MMMP in reply to Sunnydaz]

I do the opposite- lol just finished first cycle so may switch!

[Francesca10]

Sandra thank you much💕💕find this is giving me anxiety but am dealing❤️

Love

Frances