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rising CEA - bone mets

jana11
Posts: 708
Joined: May 2004

Hi everyone. I went MIA again. I sort of went through a dark spot, but it was a tunnel and I finally reached the other side. I am feeling a little better.

My CEA kept rising for the first time ever since diagnosis in '02. I just had radition to my lung met... and I was taking xeloda and avastin as maintenence chemo. We did a scan a bit earlier because my CEA shot up to 50.

Turns out I have 6 bone mets in my spine, right iliac crest (that semicirular bone at the top of the hip) and right lower rib. UGH, SIGH, etc.

I had terrible right hip pain after a massage (day before I got CT results) for about 4 days - then it just disappeared. Then, I went to visit a friend with a 15 month old little boy, who LOVES me. I held him a lot, on my left side - because I was worried about my right hip. I had SEVERE left shoulder adn arm pain for about 4 days - now it is fine. I only took Aleeve for the pain and heating pad.

Debra - I read you note about the liver... we have too much in common. I should have posted sooner. Misery loves company.

So, now I am taking CPT11, avastin, erbitux, and xeloda. I feel more tired this go around, not sure why. I think it is just the stress... I will find out if all this chemo is working Dec 11th week - next CT. I filled out my disability forms yesterday - pretty depressing... I've always loved work so much, but think it would be irresponsible to have people depending on me right now with this sporatic pain and fatigue.

Anyone else have any experience with bone mets? I did yoga this weekend and it felt sooo good. I was a little scared, but glad I did it.

You are all so important to me... I've been reading tons of posts and miss all my semicolon pals. Sorry I was away for so long.
jana

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Jana -

What can I say but "UGH". I am so sorry that you have those nasty mets. You are always such a ray of sunshine and we miss you dearly, but I completely understand the whole tunnel metaphore.

Know that I am sending positive energy your way every day. Glad to see you're doing yoga to cleanse your mind, body and spirit.

Take care and know that you're in our thoughts and prayers daily.

- SB

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Dear Jana,

Hearing from you makes me so happy, but hearing about your struggles saddens me. I am hoping that others here will have answers to your questions.

I realize that not working will be an adjustment for you, but it will allow you to focus on complete healing. I pray that your pain continues to subside and that this chemo regimen is your answer to wellness.

You are greatly admired and loved.

Hugs,

Kay

debralla
Posts: 205
Joined: Feb 2006

Jana.
I sure wish we would have talked earlier . I was the one bumping up against you in that tunnel . If we would have lit a match we would have seen each other . Thanks to Lisa and Besty for reminding me that we have people here that care about us and want to help . "In good times and in bad times that's what friends are for "
As you know I am on cpt11 and its a tough one .It takes me a lot longer to bounce back for sure !!
I also signed up for disability ,like 4 months ago . when the oxy side effects took a toll . I received my first check last month . I was pretty bummed about this at first as well . But, then I said why should I feel bad .Its my money . I have worked for many years and believe me SSI took plenty of my money .
I will email you my number . I would love to talk to you . A lunch together would be great .
Take Care and God Bless .
Debra

Patrusha
Posts: 488
Joined: Jun 2006

Jana,

I don't have any experience with mets, just wanted you to know I am praying for you and hoping the best for your upcoming CT. Hard-driving, stay-at-it, never-give-up survivors like you make it easier for newbies like me to keep fighting the fight. Hugs... oh, and if the yoga feels good, keep doing it! Exercise has shown to make a 40% difference in folks who are fighting colon cancer. Good stuff!

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kerry
Posts: 1317
Joined: Jan 2003

Jana,

I sure do miss our visits in Houston. Wish you were still there!!! I go back to MDA on Dec. 4 - 5 for my scans and doc. appt.

You are in my thoughts and prayers daily. We will get through this. Keep in touch and we've got to meet up again soon.

Hugs,

Kerry

jerseysue's picture
jerseysue
Posts: 626
Joined: Oct 2005

I'm so bummed out for you I can't stop crying. I know that you are strong and will beat this but I'm so tired of hearing my friends are in pain and stressed out. I'm with you on all this as well. I'm in round 2 of my fight. I will pray for you.

goldfinch's picture
goldfinch
Posts: 737
Joined: Oct 2003

Jana,
It is so good to hear from you. I sure do wish that the reason we hadn't heard from you was something like a nice long vacation in some sunny locale instead of this. I haven't had the mets to my bones, but sure have gone through that CPT11 stuff. The second time around was much harder.
The nice thing about yoga is you can do it at your own pace and adjust the poses if they are not working for you. Keep it up!
I found filing for disability difficult too. Use this time to take care of yourself. It can be a full time job when you're going through what you are going through. I'm sure your patients miss you, but I'm also sure they are sending love and prayers your way too as am I.
Mary

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Jana -

I am so sorry - but you are such a trooper and such a bright spot in all our lives. You can overcome this too.

I can imagine how you feel about those disability forms, but try to think that you are doing this for your patients - and hopefully there is a light at the end of this tunnel.

I've been thinking of trying Yoga myself - seems like something that could only help.

Take care (and even though you probably don't even remember it, you helped me hugely when I went thru my potential lung met issue last year)

Betsy

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Jana,

Like you I was pretty bummed when I filled out my disability paperwork and thought it meant I would never go back to work again. Part of me felt like I was giving in to the ******* cells. You know the rest about what has happened with me and now when I think about it, being out on disability allowed me to completely concentrate on my own health issues and gave me the time and the energy I would never have had if I had still been working. Start juicing and alkaline your diet!!!! Yoga is great too. You know the rest.

Hugs and kisses and you know to call or email if I can anything for you.

Lisa P.

DK2006
Posts: 126
Joined: Jan 2006

Jana,
I can't even begin to express how your news bums me out. Just know that we are all sending cyber hugs and support.
Donna

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

Hi Jana,
You are one amazing lady...you KNOW you don't have to apologize to us for being away! I'm sorry that you were in that tunnel...just know that we are all around if you hit another dark spot. I don't know much about bone mets, but I want to remind you that my sister in law's sister (breast cancer survivor) was skiing last winter between treatments for her bone mets and continues to hold the beast at bay.
Sending gentle (((hugs))) and many positive thoughts your way; continue to take good care of yourself. All the best, Judy

pink05
Posts: 553
Joined: Mar 2006

Jana,

Always know that we are all here to support you through anything and everything. You are so strong and will get through this. It may seem like an uphill battle, but I know that you will fight your way up to the top. I know how difficult it is to take a leave from a job that you love so much, but you need to take this time for yourself and heal both mentally and physically. December 11 is when my dad goes for his next CAT scan too. I really hate waiting for the results of those things. You are in my prayers.

God bless,

-Lee-

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Oh, jana, I WISH I could kiss you and make it go away. I am sending big, strong hugs right now. Please just concentrate on you right now...and if there is ANYTHING I can do...leap a tall building in a single bound, stop a speeding bullet....PLEASE let me know!!!

Hugs, Kathi

finner
Posts: 232
Joined: Jan 2005

To Jana, i am not very wordy. Just let me say that since I started reading your posts, I have found you to be an inspiration. I also did a second round of Irinotecan with Erbitux. It was nowhere near as bad as the first time. No diarrhea (spelt wrong, but it was never a word I cared to remember spelling of). That is one heavey regime you'll be on and I am pretty sure it's gonna make an impact.

Hugs
XXXX
Margo

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Moesimo
Posts: 1080
Joined: Aug 2003

Jana,

As you know I am saddened by your news. I am sending hugs and positive vibes and as always lots of prayers. I hope you tolerate your treatments.

Remember, we are here for you.

Maureen

crazylady
Posts: 544
Joined: Jun 2004

Hi Jana,
I'm so glad you posted. I was worried about you. I'm so sorry about the bone mets. Yuck! I'm sending positive thoughts and energy your way and hope that you're feeling better soon. I know how hard it is to have to go on disability. I have been home for a year now and really miss working.
Take care,
Jamie

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