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scan results not great - bone mets

taraHK
Posts: 1961
Joined: Aug 2003

Got my PET scan results this morning. Not so good. I have bone mets. Five (neck, rib, hip, pelvis, lower back). The good news is they are tiny. My onc wants to do a biopsy. He suspects my cancer has mutated (hence the rising CEA, when CEA has never been a good indicator for me before - not at initial diagnosis or with any of my 3 previous recurrences). After biopsy, he plans to start chemo - tailored for whatever they find in histology. I'm grateful that treatment is an option and that there is a plan.....

I would appreciate hearing from others who have had or are currently dealing with bone mets. I am totally asymptomatic, BTW. He's going to put me on Zometa starting next week - before the chemo proper. Are others on that?

Biopsy (probably pelvis) scheduled for next Tuesday.

It's been 7.5 years since my initial diagnosis. I've survived 3 (on different occasions) solitary lung mets.

I just can't seem to break that 2 year mark -- it's been about 1 year 11 months since my last surgery! This seems to be my pattern....

But, I am a survivor and I'm going to keep going.

Sending special good wishes to all those undergoing scans this week - and love to all

Tara

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

oh Tara I am so so sorry for this news...I know what you mean about the 2 year mark...that just stinks

you will go on girl...you will....hugs

mags

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Tara

Yours is an incredible story - I'm sorry to hear about the bone mets - I've no experience there, but I am glad that there is a plan in place, and a course of action that can be taken.

At 7.5 years, you seem to be the leader in longevity, for someone who is still "actively" battling this disease. I've caught a few of your posts in the past, but am now dialed in to your story and will be following and supporting you on your journey.

You got room for one more, right? :)

You are a survivor and so much more....I believe the word INSPIRATION is more than fitting in your case. You're a true definition of that. Your attitude is strong and I admire that.

I know you talked about having a great Mama's Day this Sunday, so I'm glad that you will get to do that.

Take care for now and thanks for your post!

Oh and I'm sure they have contacted you, but "robinvan" and "johnsfo" also have the bone mets, and I'm sure they will be of tremendous benefit and knowledge in what you are facing. I'm so much pulling for all of you guys.

-Craig

taraHK
Posts: 1961
Joined: Aug 2003

Oh, always room for one more! Thanks for your warm and encouraging words. This site is my safety net as I walk the tightrope we all know too well. All the best to you.
Tara

kersha
Posts: 63
Joined: Jul 2009

I am so sorry to hear about your bone mets. We also just recently got results from ct scan showing possible met to spine at T5. Dr. ordered an MRI so still has to do that. When my husband had his pet/ct scan in feb. it did not show any activity and his cea is 2.1. The Dr. says if it is he would also start him on Zometa but has not given any other treatment options like radiation. As of now he is on what is called a maintenance dosage of xeloda and avastin 7 days on 7 days off. Will keep posting with any updates.

taraHK
Posts: 1961
Joined: Aug 2003

Our messages just crossed - let's keep in touch!

I'm not currently on any meds -- had been NED for almost 2 yrs. But I was on maintenance Xeloda previously....Good luck!

Tara

kersha
Posts: 63
Joined: Jul 2009

We did cross. Glad to hear you had a break from all those meds and able to feel a little normal. Will keep you up to date. You can pm me. I am not sure how to do the pm on this site maybe you can help me out thanks.

Fight for my love
Posts: 1530
Joined: Jun 2009

Tara,you are in my prayers.Please remember as long as there is still options,there is alway hope.Best wishes and best luck to you with the following treatments.Take care.

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Tara,
What a strong lady you are. It is good that there is a plan to deal with these mets. Will be thinking about you as you go for your biopsy. We're here for you.

Aloha,
Kathleen

taraHK
Posts: 1961
Joined: Aug 2003

And you are in my heart, as you undergo the next step of your journey. I may be contacting Dr. Lenz again! as my plans begin to formulate. Thinking of you both.
Tara

Brenda3.16
Posts: 211
Joined: May 2009

Tara,

I agree with Craig. You are an "Inspiration". 7.5 year of "actively" fighting. My 14 year old daughter will be 21 in 7 years ! I am glad that your Onc is thinking about a new plan. I have Pet Scan on Wed and have had an emotional weekend just thinking about it. I am praying that your new plan will be successful.

Brenda

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

You are in deed a survivor!! Hugs and have a great day tomorrow!

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

Tara,

I'm really sorry that you have had this happen. It's great,though, that you have a plan and a doctor who is ready to help you continue your battle. You will face this BEAST and knock it down again!

*hugs*
Gail

betina61's picture
betina61
Posts: 644
Joined: Aug 2006

I am very sorry that you are facing this new challenge in your journey,but you have proved before that you are a fighter,and a very strong lady,you will conquer this battle once more. My prayers are with you.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Tara,

Sorry to hear of the bone mets. I'm glad, though, that your onc seems to be on it and has a plan to start right away. Like you said, you are a survivor, and you can do this. It's obviously far from the news you wanted to hear, but you are very strong.

Hugs and love to you,
Lisa

dorookie
Posts: 1736
Joined: Jul 2007

We are all here for you, so glad that your doc has a plan. WIll be praying for you, *HUGS*

Beth

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

You will see notes from myself and JohnSFO on the other thread. We both have colon cancer spread to the sacrum.

Mine is not technically a metastatic spread but rather a local spread from the rectum to the sacrum.

I think it is great that these were discovered before they became symptomatic. The symptoms can very quickly become nasty. From neurological disfunction to neuropathic pain and just plain pain in general! A pain in the *** in my case!

Radiation and Erbitux have saved the day for me. How many days? Who knows. But it is working well for now and looks good for the short term at least.

I'm almost 6 years into this and seem to get hit every 2 years like you. Grrrr....

All the very best... Rob; in Vancouver

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

It is six years for me too and I too cannot get past the two year mark. I went colon, liver, and back to liver. When I saw my liver surgeon a couple of weeks ago....he actually said....well now if you can make it to the two year point....so there must be something about this number....

Tara I have been thinking about you all weekend....hang in and hugs

mags

taraHK
Posts: 1961
Joined: Aug 2003

Hi Mags. Yes - that elusive two-year mark! I guess I should be glad I've seen so many of them! In the meantime, I've got a bottle of champagne chilling in the fridge (been there for a while). Whichever of us gets there first (25 months?), champagne is on me!

Thinking of you, too. thanks for the warm wishes,

Tara

taraHK
Posts: 1961
Joined: Aug 2003

Rob - many thanks for your reply. Sorry we are both in the same 'specialty group'! but I really appreciate learning more about what you are doing and how it is going. Yea, I'm resolved to the fact that I might be looking at keeping things at bay rather than ridding myself completely but that is OK. Glad your tx is working well for now. Let's keep in touch and thanks again for the support. I'll let you know once my 'battle plan' gets finalized.

Tara

crazylady
Posts: 544
Joined: Jun 2004

Tara,

I'm so sorry to hear your news, but know that your positive attitude will see you through. I'm sending positive thoughts and vibes your way!

Jamie

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

So sorry to hear your news, but what a great plan and to go forward. :)

You're such an inspiration! You're definitely a survivor and I have no doubt you're going to survive this. God Bless.

serrana
Posts: 163
Joined: Apr 2009

Hi from a fellow multiple "event" survivor....seems these invaders just won't quit but aren't strong enough to finish us off.....I think this is a good thing actually compared to folks who have a major "big one" and it is over. I plan to fight them each and every one.

After 2007 diagnosis I've had two lung mets after being on chemo ( surgery for the mets)each a year apart and a cerebellum met ( radiation for that one ) and during a hip fracture from a Christmas lite installation fall , well yes, dumb huh, they thought they saw sacral bone mets in a scan High drama. After several consults it was decided they weren't mets at all but in the meantime my radiation onc told me that sacral mets are not uncommon and if they became painful they would do shots of radiation. He said we wouldn't do chemo.
They decided they were sacral insufficiency fractures not mets, very common after all the chemo/rad I had in 2007 and look on scans alot like bone mets
My point here is be sure they are mets and question the chemo recommendation. I've been off chemo now for a year and living off chemo is sure more fun than on it.
Best prayers for incredible surviving We need to stick together
Serrana

taraHK
Posts: 1961
Joined: Aug 2003

Hi Serrana - Thanks for sharing your history. Sorry you too are a "multiple event survivor" (I like the term!). But, you are right -- we are survivors!

Hey, thanks very much for sharing with me about the "false alarm". I had a false alarm over a solitary lung met last summer, so I certainly want to be careful (and I'm sure my ONC does, too!). May I ask if your insufficiency fracture 'lit up' on PET? Or did it show up on MRI or CT scan? Mine did light up on PET. And I've sure had enough chemo to wipe out a small country. So, I will definitely be checking this out....I had radiation to rectal area only so I guess that wouldn't explain the other bone areas.....At the moment, I am praying for TB (!). Grasping at straws a little.....

Thanks again and yes let's keep in touch. Survivors!!

Tara

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

I'm not sure what to say except I'm so sorry this stuff is back.

Hugs - Tina

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