Bone Metastatic cancer treatment

[PLASEM]

I was diagnosed Breast lobular invasive cancer stage II on 2014, I had bilateral mastectomy, Radiation and Chemotherapy.

On August 2017 my cancer came back to metastatic bone cancer and I have been on Ibrance, Letrozole and Xgeva since 9/17.

My cancer markers went down, I was feeling better even when my Red blood cells and white blood cells were low, but lately my Cancer markers are going up, my pain specially on my hips is worse, I had CT showing new sites, my Dr order bone scan and it was ok, i just had PET /CT done and my doctor say overall is Ok, i had brain MRI yesterday i do not know the results.

I will suggest my doctor to change my Ibrance from 125mg to 100 and change from Letrozole to Faxlodex maybe my pain is due to Letrozole

What kind of treatment are you getting, thanks and God bless you

[marybv]

Hi PLASEM,

I am the Manager of SHARE's Breast Cancer Helpline and you can call any time. It is staffed by trained volunteers, who have metastatic disease or have had breast cancer, every day from 9:30 a.m. - 9:00 p.m. ET, and you can leave a voicemail outside of those hours and someone will return your call. The number again is 844-ASK-SHARE (844-275-7427). Hope to hear from you!

[Barbteeth in reply to marybv]

Hi

Just wondering if the helpline is for US ladies..I live in the UK

Barb xx

[marybv in reply to Barbteeth]

Hi Barb,

It is for anyone and can be reached internationally by dialing 212-382-2111.

Take care,

Mary

[Barbteeth in reply to marybv]

Thanks Mary

I’ll remember that

Barb xx

[SeattleMom]

Hello, Plasem,

I started on same protocol as you in December 2017. I would be a bit concerned if one scan shows new mets but the bone scan shows nothing? Are mets in new location? If so, why is the oncologist saying "overall is okay?" He might be waiting for results of MRI to go over treatment plan going forward.

Also, I have had aches in joints and back throughout my treatment. There are times when it seems to get more obvious a few days after Xgeva injection. Everyone's reaction and side effects can be different. I use extra strength Tylenol daily. (usually take when I go to bed.) Good luck to you and hope you get answers soon!! XO Linda in Seattle

[PLASEM in reply to SeattleMom]

I wiil see my oncologist soon and will have the whole report but doctors are ok when the cancer did not go to other organs but i will like to know what other medicine to try in case i have to switch medication, thanks

[13plus]

Hi PLASEM,

Asking to switch to Faslodex is a good thought and may help as those anti-estrogen drugs can cause lots of joint issues sometimes. I'm not sure if you want to lower the ibrance for the same reason? Just my personal thought but I don't personally feel that's likely to be causing your hip pain.

And your doc may very well want to change your plan when he gets all the results in. Waiting is challenging. Try to find some relaxing techniques like meditating, beautiful music, a

Nice walk or something to take your mind off it? Thinking of you

[PLASEM in reply to 13plus]

Thank you, yesterday i fell i was so afraid i hit my head back and pelvis i was to go to emergency but I felt ok thank you

[13plus in reply to PLASEM]

That was scary I'm sure. I hope you're still feeling ok today. Make sure to call your doc and tell them what happened if you feel anything new within the next couple of days.

[PLASEM in reply to 13plus]

Thank you so far i am ok, God bless you

[Hidden]

I have Stage 4 breast cancers with numerous Mets to my bones. My hip and neck/skull have the worse Mets. I take Ibrance and Letrozole. Recently went to 100 mg Ibrance due to neutrophils dropping so low. I have a lot of bone pain which could be what you are experiencing. I take Vimovo and Hydromorphone for the pain. I was told it isn’t the amount of bone Mets but the fact they aren’t spreading to other organs but you should write down your questions and get your doc to answer them all for you. Good luck.

[PLASEM in reply to Hidden]

Thank you i will do that

[Hidden]

Hi PLASEM,

I'm sorry about the pain you're experiencing...I, too, had bone and joint pain on Letrezole, and liberal doses of Advil often helped enough to at least take the edge off.

Regarding you asking to reduce Ibrance or switch to Faslodex, I have to say that I would discourage this. There's at least one other thread on this site with all of the good reasons to postpone making a change until absolutely necessary. Generally, once you stop a treatment, you don't have the option to go back, so many view it as ""ride each pony as long as she'll go...".

I've been on Ibrance 125 for almost four years now. Even when my ANC dropped to 600, I insisted on not reducing my dosage. And you know what? The counts came back up. I know that studies are showing that 100 or even 75mg is just as good, but I'm like "bring it on!", give me as much as my body can handle!

I just wanted to add my perspective, for your consideration....

Take care!

[PLASEM in reply to Hidden]

Thanks How long are you taking Letrozole, I am taking Falsodex instead of Letrozole and I still having pain, taking Ibrance 125 mg even my neutrophils are low, My MRI was inconclusive They are not sure if is metastasis The think is reconversion of bone marrow is causing the pain I will have another CT on three months, I try not to focus on my cancer and pain, thank you and God bless you

[PLASEM]

I had the results of the MRI and it was inconclusive the radiologist said that He can not say that there is no cancer but probably can be reconversion of bone marrow my doctor said to repeat a CT on February and suggested that I could get chemotherapy, I wish I could try another chemo pill instead, Kisqali and Versenio are from the same family maybe Afinitor what do you recommend me thank you