Bone mets confirmed

christeleb

Hi all!

Well I had an apt with my oncologist today who gave me the results of my bone scan and I have 1-2cm mets all over my spine and on the skull.
These are crushing news, I was really sad. He said that we can treat this as a chronic disease, so that made me feel a little better. Also he said that both my bowels and liver are clear and that is a great news. OK, I have to believe him!!

I'm starting Folfiri next week, and not looking forward to losing my hair to compostar.....

Have any of you experience with bone mets?

Thanks,

Christele

shmurciakova

I don't have experience with bone mets, but if it is any consolation to you, I have a friend who has survived for 8 years so far with advanced colorectal cancer, bone mets, spinal mets, etc. etc...
I was curious, how did you discover these? Did you have pain, was your CEA elevated? As a long term survivor I would just like to know these things.
I did FOLFIRI and it wasn't so bad, looked kinda like Linus, but I'm still here and my hair is long again!
Take care and best of luck to you,
Susan H.

lv2scrap

My dad is stage iv since Dec.05. Mets to lung, 3 vertebraes and a rib. He has been on all treatment options. His CEA has always been very high. Started at 1600 got as low as 96 and now we are back up to 1600 again. The doctor says we are out of treatment options. We are trying to get a second opinion. His doctors gave him Aridia. It is given by iv once a month to help strengthen the bone. Hope this helps.

catherine58

Oh Christele, I am so terribly sorry. My heart bleeds for you. I know that many cancers today can be treated as chronic conditions and it is certainly good news that your bowels and liver are clear. There are so many encouraging stories on this site about Stage IV survivors who have defied all the medical odds.

Big virtual hugs

Catherine

Limey

Christele, I am sorry to read your news. treating it as chronic does state hope. never forget we are closer today that ever before to finding a cure. one day away - that day may be tomorrow. hang on my frined.
Mark.

christeleb

shmurciakova said:

I don't have experience with bone mets, but if it is any consolation to you, I have a friend who has survived for 8 years so far with advanced colorectal cancer, bone mets, spinal mets, etc. etc...
I was curious, how did you discover these? Did you have pain, was your CEA elevated? As a long term survivor I would just like to know these things.
I did FOLFIRI and it wasn't so bad, looked kinda like Linus, but I'm still here and my hair is long again!
Take care and best of luck to you,
Susan H.

Susan,

my CEA kept rising and at first we thought it might be the RFA I had in September. So my doc ordered a Cat scan that showed 3 spots on my spine. I had no pain.

It's good to hear about your friend, that it is possible to live with this....What kind of chemo did this person had?

Thanks,

Christele

sladich

I'm so very sorry Christele. I was on the Camptosar and didn't lose my hair. It thinned out. I have no experience with bone mets but it looks like you caught it early. Best of luck with your treatments and keep us posted.

Debbie

shmurciakova

christeleb said:

Susan,

my CEA kept rising and at first we thought it might be the RFA I had in September. So my doc ordered a Cat scan that showed 3 spots on my spine. I had no pain.

It's good to hear about your friend, that it is possible to live with this....What kind of chemo did this person had?

Thanks,

Christele

I can't remember the details of the various things she has done. I will e-mail her and ask if I can put you in touch with her. She is very knowledgeable about treatments, etc. and has been an activist for quite a while now. You can e-mail me and let me know a good phone number and e-mail address where you can be reached.
I know she has done the Gamma Knife, and I am pretty sure she's done Irinotecan as well.
Take care,
Susan H.

pink05

Christele,

I have heard of people with bone mets that are surviving years after diagnosis. I will be praying for you.

God bless,

-Lee-