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Spread to bones?

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Hello everyone! Well, some of you know that i've been having problems with arthritis and osteopenia in hips and back due to chemo treatments. Well, i saw the orthopedist Friday, and it looks as though things are much worse than any of my other doctors thought. The osteopenia is actually osteoporosis, and it's so severe, my bones are soft. The osteo nurse said my spine is so weak, bending over forwards to pick something up can break my spine.

I initially went to the osteo docs simply to get a physical therapy appointment to learn how i can exercise without killing myself. Now the doc says i may have spread to the bones, and have to get an MRI before he'll do anything at all.

I was totally freaked out having just one more chemo treatment to go. I'm calling my onc tomorrow and telling him i don't think it's a good idea to do any more treatments. Particular until we know whether i have bone cancer now.

I want to know if any of you have had a doc tell you you could have bone spread, and the doc was wrong. Colorectal spread to the bones is rare, 6 to 8%, but odds do not impress me since i was only in the 5% chance of getting this cancer at all at my age. I'm totally freaked out.
Any advice will be most welcomed.

Many hugs,
Krista

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Oh, dear. I don't have any advice, except to say I think you should see your oncologist right away. I'm sure this is most distressing. You have my prayers.

*hugs*
Gail

Limey's picture
Limey
Posts: 447
Joined: Mar 2004

Krista, I am at a loss for words for you other than to tell you I am sorry for thiss hurdle in your journey. I am not familiar with bone mets and familiarity with coloirectal cancer but I sure would get an mri done soon so you have a better perspective.

I wish you were receiving better news. I will pray for you my dear.
Peace.
Mark

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

Sorry to see that you are going through this right now, but lets hope for the best news after the MRI is done,I will defitely be praying for great results for you.

Faith4Cure
Posts: 405
Joined: Mar 2007

Hi Krista
I'm sorry for this stress you are going through. Stay positive and wait til you have your MRI before you get too freaked out. (I know, easy for me to say) Let's pray that the doctors suspicions are wrong---and we all know that has happened many times with all of us here. My thoughts and prayers are with you. Please keep us posted!

Faith

taraHK
Posts: 1961
Joined: Aug 2003

Fingers crossed that doctor is wrong (he said "may", right?). Sending best wishes for the MRI. In the meantime, my favorite quote from this board: try to "Feed the faith, starve the fear". Best wishes, Tara

kmygil
Posts: 881
Joined: Feb 2007

Hi Krista,

I am so sorry you are waiting to hear if the the beast is in your bones, but perhaps I can cheer you up. I had a lot of bone pain for about a year post chemo. It was very severe, and my primary doctor wondered about spread.

We did tests etc and they came back with severe osteopenia/borderline osteoporosis due to the chemo. They never did explain why my bones hurt. Osteopenia and osteoporosis are supposedly "silent" conditions, no pain involved until you break a bone. I still get bone pain from time to time and I have painkillers for that. However, the good news is that there is no cancer in there. I did try one of the biophosphonates, but it made every bone, muscle and joint in my body hurt, so I just take a lot of calcium & vitamin D, along with glucosamine & choindrotin. Also, the biophosphonates don't really increase your bone mass or density, they just sort of petrify the bone you have.

Stay optimistic. You may just be in that yucky weak bone place. If you can get more calcium into your system than your body is taking out, you may want to think about small weight resistant exercises. But I am definitely praying for you! Keep us up to date, ok?

Hugs,
Kirsten

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

Hey Krista -

I would say the first and most important thing you can do - or rather NOT do - is freak out. Needless to say usakat and I just went through a rather scary time and ultimately learned that the initial diagnosis was incorrect (fortunately learned that BEFORE they took out her stomach!)

The whole thought of an osteo doc making that leap from osteoporosis/osteopenia to bone mets sounds an awful lot like a serious shot from the hip to me. Before you get too upset, I would strongly urge you to consult with your onc and get some diagnostoc testing - MRI/PeT/CT scan. Until you do that I would certainly hold onto your emotions as best you can. Believe me when I say I know that's a lot easier said than done.

Both Katie and I got chemo-induced arthritis; me in my hands and Katie in her hip and elbow. My onc put me on Celebrex for the arthritis. An interesting side-effect to Celebrex is that it tends to inhibit the formation of recurrent colon cancer (don't ask me how...) While it is in the same drug family of Vioxx, there have been no documented cases of the side-effects that Vioxx produced (which led to it being pulled off the shelf). I would caution you against using a lot of Motrin - rough on the tummy.

Keeping you in our prayers for good news when you have been able to talk to your onc and get the tests done.

Be well -

SpongeBob & usakat

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Thank you all for your words of encouragement. This site has been such a stress reliever for me. Yes, the doctor only said "may" be bone metastasis. The marks he saw on the films could be hairline fractures, and not lesions. My body feels like i have hairline fractures. I feel delicate, and achy all the time, especially when i walk, bend or rise from sitting.

I have to make the MRI appointment this week, and hopefully i can get in by next week. It feels like a lifetime to wait, but that's always been the name of the game...waiting, and seeing.

I will post as soon as i get the results,
Many hugs,
Krista

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

What good news about the Celebrex seeming to stave off recurrence of colon cancer! I also have arthritis from chemo, in my shoulders, hands and knees. I started on Celebrex, but it doesn't completely manage my pain. I was considering asking for a change of medication, but might stick it out for a little bit longer. Good news on katie's misdiagnosis and the finding out before major surgery! And you look awesome in the uniform! Mary

wallyhc's picture
wallyhc
Posts: 6
Joined: Aug 2008

Hi

I am a newbie to the CSn and have had 2 resections for colon cancer since 2006. I went through chemo for the first and not on chemo after the second ( in april 2008). I am currently doing genetic testing for Lynch's Syndrome. I have been on celebrex for a number of years even before I had my first tumor so hearing that celebrex staves off colon cancer is somewhat a surprise to me

Also a quick question: I was unaware , but not surprised, that chemo can induce arthritis. I do know that the pain in my legs has steadily been getting worse. Is this something best addressed by the oncologist or an othopedic surgeon ???

Thanks

wally

klnesbitt
Posts: 6
Joined: Sep 2008

HI SpongeBob:

I am new to this website (as of today) and reading the comments about coloncancer. I was diagnosed Stage IIIC in February 08. I have 5 more chemo treatments on Folfox regime. I was wondering about your statement about Celebrex and how it inhibits the recurrence of colon cancer. how and where did you get this information? Thanks for your response.

Karen

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

Hi Krista,

I hope you have been able to schedule your MRI for this week and that the results will alleviate your fears and explain your pain.

Please keep us posted and know that I am thinking of you.

Hugs,

Kay

lv2scrap
Posts: 44
Joined: Jul 2007

Hi there,
My dad had a matatasis to his lung which affected his 6th rib and 3 vertabrae. It showed up on a petscan, MRI and bone density test. All of this after being Stage I and cancer free for 5 years. Hopefully, this is not the case for you. I hope it is just a chemo side affect.On a lighter note he has never had a fracture.

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Wally, i would definitely see an orthopedist, or other bone expert. All of my doctors had said i had mild arthritis, and osteopenia. Only the ortho had a computer program that analyzed the scans and x-rays, and read how badly it really was (much worse than previously thought).

Also, all of the doctors besides my medical oncologist say that this is caused by the chemo. My medical onc is vehemently defending his chemo saying it's not uncommon for a 39 year old to have osteoporosis. I've never heard of an elderly person having osteoporosis as badly as the ortho said mine is! I don't know, i'm Castilian Spanish and Italian, and always had a good bone density. It's also kind of coincidental that most of my pain is in the area of where the tumor used to be.

The MRI is scheduled for next Friday. I'm going to call them three days after that and try and get the results.

Many hugs!
Krista

wallyhc's picture
wallyhc
Posts: 6
Joined: Aug 2008

Thanks for the reply and advice Krista. Good luck on you MRI !

Cheers

Wally

livefreeordie
Posts: 45
Joined: Jul 2007

i have bone mets... very painfull in the back and hips..
i had a bone scan done to verify..

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Hi Livefree! I have so many questions for you. Since i have to wait until the 12th to get an answer as to mets, or not, i've been trying to talk myself into believing that i do NOT have bone metastasis. The pain i have has never felt 'normal', and that's what worries me. What does the pain feel like? I mean, does it feel like you're stiff, and any movement feels like you're going to break in half?

I also get a lot of popping particularly in the left hip which has very bad osteoporosis. Also, do you have osteoporosis? Does that go along with bone cancer, or is that a separate thing? I know i should be asking my doc these things, but i don't see him until the 12th. You can email me privately, if you wish.

I hope they are able to cure your bone cancer. My oncologist wasn't very optimistic about any metastasis, particularly bone, but i've been reading about people who have survived. I am not panicked yet.

Many hugs,
Krista

livefreeordie
Posts: 45
Joined: Jul 2007

yes, its very painfull.. so much so that i am now on constant pain meds with a portable pump into my port... cause the pills dont cut it.. would need a whole bottle of pills every day..
I dont have osteoporosis. The pain is/was really bad in my hips, any movement was painfull.. the back pain was really bad too, couldnt get out of bed without help. :(
I had some radiation done though that really helped a lot. I might not need the pain pump pretty soon, i've been lowering the dose.. The radiation really zapped it, but from what I hear, they can only radiate once. They cant do the same spot twice because it makes the bone weak... I dont know how true that is though..
Do they have bone scan equipment in your hospital? Thats how they verified mine. They inject you with some nucular/radioative stuff, and then you sit on a table for a half hour will they scan your body.. I lit up like a chrismas tree.. Its in my skull too, so my answers might get a little blury.. lol.. I dont know why you have to wait so long.. I knew the same day..
Anyway, I wouldnt worry until you know for sure.. And if it is, radiation can fix you up for a while anyway.. Funny thing about cancer, makes every little pain or lump or sore 5 times more trouble then it probably really is...

peace :)
-lf

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

If it's true that you can't irradiate the same area more than once, then i really will be screwed as far as treatment. I had radiation for the rectal cancer, and i'm pretty sure that's why i'm in this predicament. The doctor described the bones as soft, especially on the inside of my spine.

I think it's a good sign that the intense pain i had before the osteoporosis diagnosis has lessened quite a bit since i started taking the calcium. It could just be the pain from the arthritis has subsided; i hear that pain comes and goes. But it was so intense for so long, i couldn't walk without assistance.

Believe me, i am going to make a HUGE post if the markings they found are in fact hairline fractures, and NOT lesions.

Oh, also, i did have a bone scan done to confirm the oseoporosis, but it was without contrast, and it only took a few minutes. I'm having an MRI done tomorrow to confirm what the problem is.

Thank you livefreeordie for sharing your experience with me. I'm so glad they're able to manage your pain, and i'm glad the radiation is working. For me, the radiation caused me a lot of problems. But i don't regret doing it. I believe it killed my cancer.

Many hugs,
Krista

epohdnayoj
Posts: 6
Joined: Sep 2008

My doctors were concerned initially that I may have had bone metastases. However, the pain I suffered, which eventually was diagnosed through MRI scan to be sacral insufficiency fractures, was worse with movement and settled when I rested. I understand from my doctors and from my own research that the pain from bone metastases is constant and does not settle with rest.

Regards, epoh.

wamo888
Posts: 1
Joined: Nov 2007

My husband had a solitary bone met to his skull right at the hairline above the forehead. It grew quickly from nothing to a golf ball size pressing in on his brain within 30 days. He had 15 radiation treatments and it has reduced in size about a 1/4 of the full golf ball size. He never had pain or mental issues from the compression. He is now on monthly Zometa and yes was told it was a one time shot on the skull radiation to that spot.... so if it decided to grow again we could not re-radiate. His was EXTREMELY rare for location and solitary bone mets... bone scan revealed no other spots of mets. Original dx was 9/05 rectal cancer Stage IIIC with 4 out of 11 nodes positive for cancer cells.

I hope something like Zometa could help with your bone pain. My husband is achy and flu like for two days and then back to "normal"....

Melanie781
Posts: 33
Joined: May 2008

Wamo888: my husband was dx 12/07 rectal cancer Stage IIIC w/4of15 pos nodes and 1of7 pos nodes from rt-groin (surgeon found swollen spot during original pre-surgical exam.) What kind of adjuvant, if any, chemotherapy did your husband have?

Krista: wishing you strength with this new bend in the road.

~Melanie

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