So disappointed: I was so happy and... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

3,703 members4,348 posts

So disappointed

seiler
seiler

I was so happy and proud that my Ibrance was working so effective and for so long--close to 5 years. I still support it thoroughly, but today I was diagnosed with cancer in my upper spine. I don't know any details yet, but it's early and localize, and it should (hopefully, maybe, I wish,wish,wish) be taken care of by radiation. My consultation with the radiation oncologist is scheduled for next Wednesday. Isdnd my love and aloha to all of you.

31 Replies
oldestnewest

Praying the radiation works for you and that you’ll be able to stay with Ibrance.

Hi,

I wish you well with the appointment for next week. Hopefully radiotherapy will be able to take care of the new metastasis in your spine.

Take care,

Sophie

I know that feeling of disappointment. I was really, really bummed when Ibrance stopped working for me. Even after some progression, I still asked my Onc to let me stay on it just a little longer just in case it was still working. Unfortunately, it didn't work and I had to get taken off. But WOW, you got 5 years out of Ibrance? That's amazing! I only got about 22 months and my onc said that that was more than the average (I think 15 months is average).

Good luck w/ the radiation.

Just read your bio story. You are one hell of a fighter and an inspiration. Cancer seems to be trying, but your body keeps saying nope!

Five years is a terrific run on Ibrance. Hopefully radiation will work. Let us know how your appointment goes.

One day at a time!!!!!!

Did you have pain in your upper spine or was it just relieved in a scan?

seiler
seiler in reply to Kdiet

No. All the pain is in my back by the shoulder blade and it runs down my arm to my little finger. The pain has gotten really bad in the last few days. It has been bad for about 3 months but now it is ridiculous. The spine itself feels no pain. The first time I had MBC in the bottom of my spine, the pain was all displaced to my left hip. Now with active cancer, round #3, it's felt in my right back and arm.

Kdiet
Kdiet in reply to seiler

Thank you. I have been having back pain and assume the worst but could be from Zometa or mattress. Scan in October. Thanks again for replying! X

seiler
seiler in reply to seiler

I don't know what to what to say. You certainly know already. ( have to rewritee very word I write and because because I can't xome upkwith with correct . . . roght-p I just can't. I can't/ Myfkngers jerk. I sould like amess. It is at the top of my spine. Seiler

Im sorry. I have bone Mets too. FWIW my oncologist told me recently that if something like this happens spot radiation can help. I hope so for you.

Please keep us posted. We are here for you

You ARE a trooper! Read your bio - wow!

So sorry the ibrance has stopped working but 5 years is great! I’m 73 and would love it if I got another 4 1/2 years.

Hope your appointment next week with radiologist confirms that radiation will get this one too!

Please let us know how it goes!

Sending big hugs.

Sorry for your dissapointment ..I too am in Imbrance and at the moment keeping cancer stable ..they now sending me to someone about having. Radiotherapy in my brochial plexus for my pain ..I too have in my upper spine but gives me no problems .only problem I have us my bloods keep crashing delaying my treatment ..I hope they can do something for you

Best wishes xx

My fingers are crossed for u 💕💕💕

That's very kind of you. Thanks!!!!!

Praying for u to stay on Ibrance! I’m well into the normal stay on Perjeta of 4-5 years. Some last longer but I really shouldn’t be surprised if I have to change soon. And if we haven’t changed yet it’s a little scary but many on here have a are continuing to do well...😀

Sending prayers and good vibes your way for successful radiation therapy.

Radiation did wonders for me on my upper spine and shoulders. I am also on Ibrance (1.5 years) and have stayed on it even after the spot radiation saved my upper spine and relieved my shoulder pain. The Ibrance seems to still be keeping my cancer at bay. I want to caution you on your radiation. I am not sure what discs will be radiated but with me it included the area near my esophagus. Somehow my esophagus also got some radiation and now I have trouble swallowing, especially liquids. I spoke with the doctor and it seems that the angle could have been adjust to avoid the esophagus. Wish I had known this but nothing can be done now. So please make sure you discuss this with your doctor. Good luck—it will work and work well! You may even ask your oncologist to keep you on Ibrance to see if by some miracle it continues to work, it did for me!

SeattleMom
SeattleMom in reply to Gizwil

Hi, Giz!

Just wanted to share with you that I suffered from esophagitis when I first finished 10 rounds of radiation at outset of my MBC diagnosis (almost 3 years ago.) It took a few weeks to resolve but the swallowing improved a great deal over time. Hope that yours does the same!

XXOO Linda

Praying the radiation works for you. I’ve been on Ibrance too... and it’s always in the back of my mind, when will it stop working 😰

Sorry to hear Ibrance stopped working. And although 5 years is a great run, I know you hoped for more. Still...there's a lot of treatments after radiation blasts those cancer cells to oblivion.

Sending hugs

Susan

I am sorry to hear. Will you continue with Ibrance after radiotherapy?

Praying for you and hope the radiation works . Be strong -I have it in my spine since sep 2018 but no treatments just the Ibrance with letrozole. I will not do eradication and chemo. I made that choice just the pain I don’t want it. Let me know what happens with your radiation therapy. I wish you the best!🙏❤️🌹

Prayers for you ...you are a walking miracle based on everything you've gone through!

Hoping the radiation works!

Hope and pray that radiotherapy works and that you can still stay on Ibrance.

Hoping your appointment goes well. To be local and early sounds like a positive thing. All the best!

Sorry to hear about the resurgence of your cancer. I hope the radiation helps you recover. Hugs and best wishes. Marlene

Hello seiler.

I too, am on Ibrance. 29 months now. And still stable thank goodness. Sorry to hear that your cancer is on the move! Damn that’s a thing none of us want to hear, is it?

I had radiation to spine and hips, (like an upside-down T shape) 6 months into my treatment, and it has helped me I think.

Also had some trouble with oesophagus. So I agree with Gizwill. Talk to them about that. But my oesophageal probs have mostly settled now.

So thankful to read that you got so long from Ibrance. That’s why I love this site so much. You’ve reminded me how we can be so helpful to each other with our goings on and our stories told here. 🌼🌻🌼🌻

(Firstly, I want to apologise in advance here. I am not in any way gloating. I’m quite aware how the tables can turn. And for those of you here, who are having a hard time, it must be awful to read positive stories. But I know we also need stories of hope here especially for newbies.)

I’ve just been told by my oncologist that when one treatment works really well, it can sometimes mean that any treatment you have after that, your cancer will be very responsive too.

I don’t know if she was just telling me what she thought I wanted to hear or not. But I’ll take some of her wisdom and knowledge, and spread it thickly on my hopes.🌻

Love to all from down under.

❤️❤️❤️

Chris.

SeattleMom
SeattleMom in reply to Timtam56

Hi, Chris!

Never for a minute think you are gloating! Positive results for any one of us provides so much HOPE!! You are an angel!

XXOO Linda

Timtam56
Timtam56 in reply to SeattleMom

Oh Linda. You’ve made my day. I don’t really think I am an angel. But thanks anyway. 👏🏻🤣

SeattleMom
SeattleMom in reply to Timtam56

💗🙏🏻😇

Wishing you well with your radiation appt. Keep us posted.

Stacy 😃

You may also like...