mbc spread in bones and liver - SHARE Metastatic ...

SHARE Metastatic Breast Cancer
3,416 members3,898 posts

mbc spread in bones and liver

Jaxon2007
Jaxon2007

Just wondering about others out there that have had success in treatment of MBC. After breast cancer and a mastectomy, chemo, and radiation and making my 5 years, I have now been told the breast cancer has moved to my liver and bones. Was taking Ibrance but apparently it stopped working. Now on Afinitor and Exemestane. I have an appointment with an oncology in Houston at MD Anderson this Friday.

93 Replies
oldestnewest

You're going to a great place! Please let us know how it goes. September will mark 5 years for me, so I'm especially curious.

Jaxon2007
Jaxon2007
in reply to diamags

I will let you know for sure!

Jaxon2007
Jaxon2007
in reply to Jaxon2007

diamags, MDA told me I was totally on the wrong treatment. That what i was taking would do me no good. Changed meds to xeloda and told to have labs done every 3 weeks and sent to them, scan in 3 months, and to check in weekly. Stop all other treatment from primary onc. , which last time my infusion iv was in my thumb.... really!!

What did your reg oncologist have you on?

first it was falsodex shots, zometa infusion and Ibrance, then when determined that wasn't working it was afinitor and exemestane and zometa infusion, no shots

Thanks. Did you have to go to MDA or is it like Dana Farber where you do it online?

Oh i just reread that you went there.

I have never heard of Dana Farber

They are in Boston and considered one of the best.

ok, thank you

How are you doing? Hope you are well!

I'm writing as advocate for my sister. It's just hard for her. She is on Xeloda and has done 2 treatments and so far no side effects except being really tired. Her WBC was a 1 and oncologist still did the second treatment. I guess he thought the benefits would outweigh the side effects since she has had no treatment for several months. She had to go to the ER last week as she had 102 degree fever and her oncologist had told her if she got a fever of 100 degree to go to the hospital. She stayed 2 nights and was given the Granix shot and her WBC went up to 3.7. This oncolgist in Amarillo is hoping for remission. I will keep you informed....

Duffles
Duffles
in reply to Jaxon2007

Hi I know these posts are from a couple years ago, but wondered how the Xeloda worked for all of you. I am just on 4th cycle after spine fusion, 2 rads , Ibrance (dropped my too low so taken off after only 2 weeks). So really this is my first systemic treatment. I have bone mets that progressed a lot before this, so would like to hear others experiences. Thanks!

Jaxon2007
Jaxon2007
in reply to Duffles

Duffles, my sister's has new progression in her soft tissue at her L1, she just finished 10 radiation treatments to her L3, which all I know about those is the spine. She now has necrosis in her jaw bone and can no longer walk. Her oncologist said it will be a different chemo, but she won't know until this Thursday. Prayers for you !

Duffles
Duffles
in reply to Jaxon2007

Thanks for responding. My thoughts go to your sister...and to you for being her caregiver! This MBC is a continuing battle, for sure! I don’t know if the Xeloda will slow my bone mets, but trying.

You just never know. I had stage 0, confided to duct with lumpectomy and radiation 11 yrs ago . Told I’d never have problem. I was then diagnosed with stage 4 In brain, skin, lungs, liver, bones, eye. I had 3 months of chemo and now on Verenzio and Faslodex. Stay positive!

Jaxon2007
Jaxon2007
in reply to Burgerde

I will try to stay positive, and you for sure let me know how you are doing.

Burgerde
Burgerde
in reply to Jaxon2007

Thanks. Will do. Please also let me know how it turns out after your consult.

kit5
kit5
in reply to Burgerde

i am sorry to hear that! but i am similar - stage 1, "get on with your life"...then 4 years later -BAM - mets! i have bladder, colon, and bone. i still am in shock and even my dr was shocked - she said bc wouldn't recur as a bladder issue!! and a lump under my eye - that 3 doctors told me "was no way cancer". lol.

tell me about your eye! it is so unusual. mine is under my right eye... and i am now on xeloda which seems to be the wonder drug and the mass is smaller - almost gone - but i have had oozing out of the eye, which i assume is just how the mass gets going on its way... my dana farber doctor (who put me on a trial for 8 months) said the xeloda should get the eye mass:) my ucsf doctor has me scheduled for my eye scan tomorrow. i am super excited to see if it is almost gone!!

hope you are having a great day. i am off to swim with my icky oozing toes! maybe the chlorine will kill the cancer!! lol

Jaxon2007
Jaxon2007
in reply to kit5

Praying for good news on your eye scan tomorrow!

Jaxon2007
Jaxon2007
in reply to kit5

How did your eye scan go?

kit5
kit5
in reply to Jaxon2007

the order didn't have with contrast in it, so unless i wanted to possibly absorb the $5k - $7k for the contrast that was not pre-approved, we re-scheduled for aug 10th. but since my colon is better and no other progression, i am feeling good - i do want to see if the xeloda is getting rid of it. and my dr checks my brain "just in case" even though she says i don't have the kind of cancer that goes to the brain...famous last words, right? lol. i will let you know! for now i'm off to see mission impossible and have dinner with 2 of my 3 boys! happy sunday. talk later this week!!

Jaxon2007
Jaxon2007
in reply to kit5

sounds good, have fun!

Barbteeth
Barbteeth
in reply to Burgerde

You don’t!!

Stage 1..no spread..24 yrs later mbc in bones!!.. just recovering from the shock

B x

I will be looking forward to hear from you concerning what M.D. Anderson tells you and your experience there as a whole. As you know it is number one in the world, at least the nation. I do know the Dana-Farber had a much more intensive pre-appointment information needed then I have Experienced at A couple ofother institutions.Please keep us informed

Jaxon2007
Jaxon2007
in reply to blms

I will let you know. I went last October when I was told my cancer had come back in my spine and the first thing they wanted to do was a bone biopsy, as they weren't certain my Oncologist at Texas Oncology was treating for the correct one. Hr positive her2 negative, the results were not clear after the decalcification , but was told from what they could test it looked more like Triple Negative. But told me that the treatment would be what Texas Oncology was doing. I feel as if scans had been made every 3 months it would have been caught sooner. Its like pulling teeth trying to get a scan done. But I will let you know what MD Anderson says when I get back.

kit5
kit5
in reply to Jaxon2007

hi jaxon - i had er/pr+ and her2 negative round 1 - stage 1. then when i got mets, i got another breast lump that shows barely er+, pr negative and her2 negative...which makes me eligible for er+ treatments and triple neg treatments...i have 2 oncs - one at df and one in sf. they said different things about being treated now at triple negative - did your onc discuss this with you - super curious. am going to sit in on the aug 6th webinar and ask them too... then i'll have opinions from dana farber, ucsf and sloan!!

Jaxon2007
Jaxon2007
in reply to kit5

No, my onc would not even consider the fact that my status could have changed. He was adament that it would be the same as my intial bc status

Jaxon2007
Jaxon2007
in reply to kit5

My primary onc refused to believe that my cancer status could change so would not even discuss the possibility.

13plus
13plus
in reply to Jaxon2007

That seems ignorant. It always has potential to change.

Hi Jaxon. You were clear for 5 years? How long did you take Ibrance?

Hoping your trip to Houston is very productive.

Janine in SE Louisiana

Jaxon2007
Jaxon2007
in reply to JBirdnut

I took Ibrance for 9 months, after 3 months scan showed stable, after 6 months scan showed tumors increasing some tumors increasing in size, some slightly smaller, after the 9th month scan, had moved in the liver and ribcage. Hope my trip will be good.

Ur story sounds the same as mine except after a year on ibrance mine is still only in bone. Thank god

I pray the Ibrance works for you as apparently it did not for me. My hair was starting to fall out again while taking it, but no other major side effect.

Hoping for a safe and successful trip for you. Please post your experience at MD Anderson. I sure hope they help you.

I get PET SCAN results tomorrow.

Jaxon2007
Jaxon2007
in reply to JBirdnut

I will say a special prayer for you asking that your results are good!

Jaxon2007
Jaxon2007
in reply to JBirdnut

My visit to MD Anderson was a total different opinion. Was told primary Onc was treating for the wrong type of cancer. Medicines and infusion I was on will not help. Changed medicine to xeloda and asked to come back every 3 weeks for labs and 4 month scan. Will find out next week about treatment schedule. Overwhelmed right now.

JBirdnut
JBirdnut
in reply to Jaxon2007

What type of cancer did MDA day you have? Didn't your local Onc berify what type you had? This is quite troublesome.

I hope Xeloda works for you and are on the road to being stable or even better!

Jaxon2007
Jaxon2007
in reply to JBirdnut

My onc insisted it was the same as my breast cancer and would never change. It did! No he did not verify that to be the case when it spread. My sister and I repeatedly told him treatment not working as my hair was getting really thick, so I knew the Ibrance had stopped working. I did not need the Falsodex shots nor the zometa infusions. I'm told now to come back to Houston every 3 months for scans but report in weekly and have labs only done and sent to Houston every 3 weeks. Houston told my daughter that they were very disappointed in my primary onc. and I needed to stand up for myself more. I will find out type next week, I'm sure she told me but I'm just so overwhelmed right now.

JBirdnut
JBirdnut
in reply to Jaxon2007

I am sure you are overwhelmed and rightly so.

What I have gleaned from your previous posts is on your first visit to MDA they said your cancer appeared to be Triple negative but not conclusive. And you were told that either way the treatment would be the same. So on your most recent visit, MDA doctor must have discovered you had a different type that should not be treated with afinitor but with Xeloda?

This is all so scary.

Jaxon2007
Jaxon2007
in reply to JBirdnut

Yes, MDA said the treatment primary onc was doing would only target one area. Like just the bone lesions and not the liver. The treatment needed is to target all areas the cancer has spread to. I'm not sure how this posting works but hope all can see my results as I told them I would post. Thanks for your support JBirdnut

JBirdnut
JBirdnut
in reply to Jaxon2007

Yes, all can see your posts. I have read about Xeloda and it seems to work well.

I thought my onc would try another oral drug for me, but he said he had very good results with Eribulin. Not thrilled because it is an infusion drug and there goes my hair, lashes and brows again.

When I was diagnosed with MBC, my onc ordered blood samples be sent to Guardant 360. It verified beyond the bone biopsy results that the metastesis was still HR+,HER-. Hopefully my onc is still on the right track.

Best hopes and wishes to all.

Janine in SE Louisiana

Jaxon2007
Jaxon2007
in reply to JBirdnut

I will keep that in mind on the lab work. Best to you too, keep in touch.

JBirdnut
JBirdnut
in reply to Jaxon2007

Not sure that others see our posts from today. See no other comments. I thought whatever was posted went to all.

Jaxon2007
Jaxon2007
in reply to JBirdnut

Yea, I don't know either. Hope so as it might help others too.

Jaxon2007
Jaxon2007
in reply to Jaxon2007

I can't even figure out how to " follow " someone. lol

HiddenThis reply has been deleted
Jaxon2007
Jaxon2007
in reply to Hidden

Ok, thank you!

Jaxon2007
Jaxon2007
in reply to JBirdnut

Triple Negative now

I just read your earlier post about PET SCANS. I feel the same way. After going through the chemo and radiation, you would think that a PET SCAN would be done. But we are sent on our way feeling that we are clean. Even at the 6 month out checkup...why not one then?

When MBC was discovered 2 1/2 yrs later, I asked my onc why wasn't a PET SCAN done after original treatment or at least on a follow up at a year. She said it isn't in the protocol and insurance won't cover it. In my case, I feel, like you, it could have been caught much earlier.

Thank you for the good wishes on my PET SCAN results today!

Janine in SE Louisiana

Jaxon2007
Jaxon2007
in reply to JBirdnut

I was told that insurance would pay for a scan once a year unless you complain of pain, which once I said I did have back pain just to get the scan, but once you have been told you have mbc it is mandatory for a scan every 3 months. MD Anderson told me that last October and told me that if my Texas Oncology onc wouldn't do one to come back and they would. Texas Onc kept saying I needed to wait until I took complete cycles of Ibrance as sometimes cell counts were too low and had to postpone. I should not have listened to that.

JBirdnut
JBirdnut
in reply to JBirdnut

Yes, after diagnosed with MBC, I was told about the 3 moth intervals.

But being uninformed and thinking I was cured of the original BC, I didn't seek out my onc when the back pain started. It never entered my mind that it could be cancer. I went 6 months going from internal medicine physician who told me take Aleve. Then a massage therapist who after 3 visits said not muscular and I should try chiropractor. Did that for several weeks and by that time was using a cane to walk. UGH!

Finally out of desperation for relief, I went to a pain management doctor. He listened to my complaint, moved my leg in several directions and said we need an MRI asap. MRI showed abnormalities in spine and the doctor sent all info to my oncologist. Again, I didn't even think of cancer. Then PET SCAN and diagnosis of MBC.

I was never forewarned of any pain that doesn't go away, just sent on my blissful way after initial treatments with appt in 6 months.

Hind sight is 20-20.

Jaxon2007
Jaxon2007
in reply to JBirdnut

I should have insisted on the scan and not been intimadated by my onc. Also my Dr. would get huffy even talking about second opinions until this last appt when it has spread to my liver, then he's all agreeing about going to MD Anderson. All the hoopla about one will not be treated differently when one disagrees is not true.

kit5
kit5
in reply to Jaxon2007

any good doc will welcome 2nd opinions. my ucsf doc insisted on a second opinion, which was really helpful in me feeling confident that they both told me the same thing:)

Jaxon2007
Jaxon2007
in reply to kit5

I agree and should not have been so intimadated. I just felt like I had no choice. I still have to work and have limited income, and Houston is 10 hours from here.

kit5
kit5
in reply to Jaxon2007

so great news that you have someone who seems a little more knowledgeable at md anderson:) i just finished cycle 5 of xeloda and scans this week show cancer regressing:) it is a great drug with few side effects! you could probably get your blood drawn somewhere close to home - not sure you need to travel to md anderson for that...but def go quarterly...make a fun trip of it. nothing like shopping at the houston galleria! keep the faith. also, if you have to go to your old onc again, bring a super confident, in your face friend with you - write down your questions and write down his/her answers. do not let an oncologist intimidate you or make you feel bad for asking questions - that is their JOB! and if they do make you feel bad - find a new doctor!! seriously.

Jaxon2007
Jaxon2007
in reply to kit5

guess I'm reading my messages backward, i shouldn't have to go back to my first onc, thought about just going back to facility to get the labs and sent to MDA

kit5
kit5
in reply to JBirdnut

my dr said to always call if some pain doesn't go away with advil.

Best wishes on your appointments.

You’ll see several posts w Mets to liver that are NED or having great response to meds. I also have a colleague w Mets to brain 2 years ago. Today, NED.

I do have to remind myself not everyone gets NED. The ambition is no progression; maybe shrinkage. As you’ll hear, it’s a chronic disease that can be managed.

❤️

NED?

kit5
kit5
in reply to Snowcone16

as fonzie would say - exactuamundo! xeloda is a great drug. i am getting shrinkage:) they want slow regression and long term duration!!

kit5
kit5
in reply to kit5

no evidence of disease.

Jaxon2007
Jaxon2007
in reply to kit5

Oh, that is so hopeful to hear, please keep me informed. No evidence, praise God!

kit5
kit5
in reply to Jaxon2007

i wrote "no evidence of disease" in reply to "what does NED stand for?". my scans were great, though - cancer in colon is shrinking...bone mets stable (they are scatterings of lesions - whatever that means..) so yay!! i have been on 5 cycles - 2 weeks on, one off, and am starting #6 this week. so this scan was my first since progression on trial drug. i started xeloda in april - so it started working immediately, bkz my symptoms went away. the scans confirmed the cancer is regressing:) my dr said some women stay on xeloda for 10 years!

Jaxon2007
Jaxon2007
in reply to kit5

Ok, I'm kinda slow on the abbreviations, lol

Jaxon2007
Jaxon2007
in reply to kit5

How long were you on this drug before you saw improvement?

MMMP
MMMP
in reply to kit5

I totally agree the xeloda is great- been on it for over 2 years but just as of my last few visits my 15-3 is rising- going for CT on Thursday!!

Jaxon2007
Jaxon2007
in reply to MMMP

Let me know about the scan. Isn't that 15-3 a so called cancer marker?

MMMP
MMMP
in reply to Jaxon2007

The markers are just another tool for a reason to scan. They are not the most reliable but it's always better to see the numbers go down than up.

Jaxon2007
Jaxon2007
in reply to MMMP

The reason I asked is my first onc told me they were not reliable as some women do not have them, but now knowing he was totally wrong about everything I'm going to look on past labs and check mine. Let me know Friday if you get your results if you don't mind.

MMMP
MMMP
in reply to Jaxon2007

Will do!!!

Hi Jaxon, my first one didn't order marker tests. She went by the regular labs drawn the same day she saw me. Some once order it, others don't. If your onc told you it wasn't a reliable tool, then he probably never ordered the marker test. So if it wasn't ordered, you won't see it in your chart history.

I am off in a new direction now since Ibrance failed to keep working. Doc wants plan to be Eribulin infusions. Loss of hair will happen it seems.

Just went online and fill out forms for a visit to MD Anderson.

Long bumpy road..

Jaxon2007
Jaxon2007
in reply to JBirdnut

Ohh that's wonderful that you are going to MDA. Do you live close to Houston.

JBirdnut
JBirdnut
in reply to Jaxon2007

No, I live 60 miles north of New Orleans. We may fly there.

Jaxon2007
Jaxon2007
in reply to JBirdnut

I have flown there before too, I fly into Hobby as its alot closer than Bush

JBirdnut
JBirdnut
in reply to Jaxon2007

I found an app for Super Shuttle. They pick you up at airport and bring you to MD Anderson for $20, one way. I really don't want to deal with traffic in Houston and making the long drive. Good to know that Hobby is closer, thanks!

Jaxon2007
Jaxon2007
in reply to JBirdnut

I didn't know at the time that there are multiply MDA locations in Houston. My daughter lives in Kemah and had driven down to Ft. Worth to meet me at my sister's after I was first told it had spread. I had no idea, but my daughter called MDA and they told me I could get in the very next day. First I went to the Bay area location and saw an onc, had labs and a consultation. They told me then I needed a bone biopsy to determine cancer type. I stayed there 3 weeks waiting on an appointment for the biopsy which I had to go to another location, which was downtown for that procedure. The traffic was awful and it took my sister driving and me navigating to get us there. The Bay area location isn't so bad traffic wise. I truly believe if I had stayed with MDA and not messed around with the Amarillo onc my situation would be entirely different. But one never knows, I was told by MDA that they would have agreed with the treatment I was given in Amarillo. Keep in touch.

Swtberry
Swtberry
in reply to Jaxon2007

Please how do I get in touch or in to MDA. I live just about 2 hours from Houston. Do they require some sort of insurance? As I actually do not have any.. my Mets are in the lymph nodes, lungs, liver, whole of spine and hips and femur neck. Been on ibrance +letrozole, helped but the bone lesions was getting worse. Did 6 cycles of IV chemo, the liver shrunk from 3cm to 1.6cm, but new bone spots kept coming up. My oncologist is about starting me on afinitor +exemestane. Oh and I do the awful zometa too. Best wishes to us all.

Jaxon2007
Jaxon2007
in reply to Swtberry

877-632-6789 or log into their web site, good luck..

Swtberry
Swtberry
in reply to Jaxon2007

Thanks

Jaxon2007
Jaxon2007
in reply to Swtberry

keep in touch, let me know if you got an appointment, praying for you

how are you? my eye mass is going away:) so are some of the other "lesions"... so yay! hope you are doing well... i finish cycle 6 of xeloda this week and my dr is super excited... now i just need to work on my golf game and my $$$ situation:)

Jaxon2007
Jaxon2007
in reply to kit5

My insurance finally approved the xeloda so I'm only on my second day. I go back to MDA the 17th of this month. So happy your eye mass is going away and some of your lesions. That's great. If you're like me though the $$$ situation is ongoing struggle.

kit5
kit5
in reply to Jaxon2007

hope the 17th goes well...how is the xeloda? i am finishing cycle 6! then hoping to drop dosage to 2000mgs, now that eye mass is going away and other spots are receding! i quit my big corp job in 2013, diagnosed stage 1 a month later...so having to deal with health issues while running a company is tough... then my husband decided he wanted to act and do voice work full time! so we are living on love and savings... three kids in sf... yikes. but much better having meaningful. lmk how mda goes! you are in good hands!!

Jaxon2007
Jaxon2007
in reply to kit5

So far so good on the Xeloda. I'll let you know how the 17th goes. Keep your fingers crossed for me.

Swtberry
Swtberry
in reply to Jaxon2007

Keeping mine crossed as well and wish you all the best.

Good luck! I understand that the Anderson Clinic does amazing work.

just diagnosed with mets to pelvis and will have a biopsy this Thursday . Getting a bone and lung scan also. once I have this data I am sending it all to MD Anderson for evaluation. I am at University of Michigan for treatment right now but they are so rigid. Have heard nothing but good things about the care in Houston. How are you feeling about it?

Things are so much different here, like the treatment process is not as painful. I feel like I'm in the best place I can be at to fight this terrible hand I was dealt. Good luck to you!

Thanks. Good luck to you,too. I think we can do this

I have liver and bone mets. Ibrance stopped working for me too, now I'm on a parp inhibitor. I have scans in June to see if its working. There are tons of new meds to throw at it, we will be fine.

First Fluvestrant and then Ibrance failed me. I got liver mets on the Fluvestrant and bone mets on both drugs. I got on Metformin and skin cancer on my stomach went away after a week. My oncologist was shocked as one of my liver mets seemed to be dying after a month. My bone mets did NOT increase while on Metformin. I need to have another scan for further results.

Please keep us informed about MD Anderson. I may go there too!

You may also like...