good news but......

[Eliactida1955]

hello everyone!! I’m so grateful for my lab results which showed a little low in Rbcs and high in a couple of others -the RBcs again. My tumor marker was 28 which is great and last Pet scan was not showing any lighting up and tumors shrank away. I am still on Ibrance 125 mg and letrozole 2.5 .every three months I take zometa iv infusion. The problem is my legs so weak and I’ve been going everyday for water exercises-it feels like my bones pop and move around. I really feel like my muscles shift away from the bone. As of lately it is a lot worse making it difficult to walk. I know that many experience this but any suggestions from anyone? I don’t take any vitamins but only Motrin if needed and not daily. I am only taking 14 pills of the Ibrance every month giving me a longer break but onc doesn’t know.. Those meds are healing but make me feel crappy. I wish everyone the best and praying for us all🙏❤️

[Kiera49]

Hi sorry your having a tough time at the moment, I'm sorry cant be much help, I take ibrance and letrozole and zoledex for bones, so far seems to be ok. I wish you all the very best, Tracey x

[Eliactida1955 in reply to Kiera49]

I know there’s not a lot to say but I guess the meds work with a lot of side effects -thanks

[Red71]

If you are taking more time off the Ibrance because you feel so crappy I would definitely talk to your oncologist. When you take that much time off it does allow the cancer more time to try to overcome the medication. Your oncologist could decrease your dosage and you might feel much better and it would allow you to take it the standard time. I would also talk to him about how your legs feel. Elaine

[Eliactida1955 in reply to Red71]

Thanks I will ask him to do that but by taking less I am decreasing it . Anyway he needs to know how it feels and I am diabetic also so I’m not sure it isn’t because of that-thanks

[Red71 in reply to Eliactida1955]

The problem with Ibrance is that it’s half life is 27 hours, so generally every day that you don’t take it you have half as much in your blood stream. On the second day you only have a quarter, the third day an eighth and so on. That two week period gives the cancer time to figure out a way around the Ibrance. And it will! I had no evidence of cancer after taking it for 6 months and my doctor was pleased that it worked so quickly. But a year later it is back in two places and we are changing my treatment. So less medication taken for a longer period works much better in the long run than more medication taken for a shorter period. I’m not trying to tell you what you have to do, just want you to understand how the medication works so you can make the best decisions for yourself.

Ps....great Halloween costume!

Elaine

[Eliactida1955 in reply to Red71]

Thanks for your reply. I understand what you are saying. After the first pet scan and after 4 months on Ibrance there was nothing but one node in left axilla that lit up and all tumors disappeared. I have been raking less pills a month usually 5-7 less for about mmm 3-4 months now. I will ask my onc to lower dosage otherwise my labs are bad usually low wbc and you become immune suppressed. My left axilla node is calcified now and nothing is lighting up. My onc was ready for chemo -radiation and surgery and I told him after another consultation about Ibrance. He told letrozole would work by its self.. get that.. my highest marker was 150 CA 27-29 now is 28 and below 38 is normal so something is right but as we all know Cancer is there and it’s a matter of time. No cure with stage 4. I have a little different outlook. Hope all is well with you. 🙏❤️Praying for all!!!

[Eliactida1955 in reply to Red71]

I talked to my ononcologist and he’s not help not recommending anything to help with leg weakness. I don’t post much as not much to say-yes I’m still cutting Ibrance staying off a long while not taking 21 pills and tumor markets are decreasing every month so far nothing lighting up. My oncolologist remeber wanted aggressive treatment and never recommended Ibrance told me letrozole could do it alone. I’m the one that pushed for it..I’ve take zometa about 4 infusions since diagnosed but stopping it for awhile and we will see.. my joints hurt and really think it’s the meds but we can’t do much. I am grateful for being alive and I hope the best for everyone-it’s tough just knowing it will never be the same.❤️🌹

[Eliactida1955]

I have been decreasing it for three months and tumor marker is decreasing and lab border low red blood cells . So I am aware that less of this med is needed -and by taking this drug for less days seems to work even better. I will let him know...

[mariootsi]

Happy for your scan results amazing! Sorry you are experiencing weakness. Sounds like therapy will help. Keep at it.

[mariootsi]

Let your onc know about your decreasing the Ibrance. days. That's important.

[Eliactida1955 in reply to mariootsi]

I’ll let you know -I was diagnosed in sept 2018 but didn’t take any med till nov 1.

[Eliactida1955]

I will thanks hope you are fine❤️🙏