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mixed PET results & question re radiation for bone mets

taraHK
Posts: 1961
Joined: Aug 2003

Brief background: I'm on Xeliri + Avastin for bone mets. Done 16 cycles so far and side effects not too bad.

I had a PET scan yesterday and got the results today. Mixed news. The good news is that the pre-existing mets have ALL shrunk further -- and one has disappeared completely. So, the chemo is still working. (Also, still no "visceral" involvement ie lung, kidney, liver - yea).

The not-so-good news is that I have two new bone mets. My oncologist said it is not unusual to have some mets disappearing while others appear -- because the chemo is designed to "mutate" the cancer (not his exact words -- but something to that effect).

He is planning to zap the two new mets with radiation. Some fancy radiation machine -- he'll chose either IMRT or Tomography. Probably 15 zaps (ie 5 days a week for 3 weeks).

I am concentrating on counting my blessings, which include: I'm blessed to get the results the day after the scan (and for that Xanax last night!); I'm blessed to have an oncologist whom I consider to be wonderful and wise; I'm blessed to have treatment options available which my oncologist has confidence in.

I've had radiation previously, for my original rectal tumour. I am prepared for fatigue. Would be grateful to hear from anyone who has had radiation for bone mets regarding your experiences, side effects. I'm especially interested in skin reaction (can't possibly be as bad as when my nether regions were fried! - ouch! still vivid memories of that....).

BTW my bone mets are totally asymptomatic -- I'm still doing yoga, and other exercise. Can't hike because of the xeloda (feet) but I've just taken up rowing (machine) - loving it!

Tara

AnneCan
Posts: 3692
Joined: Oct 2009

Tara,

I like how you are counting your blessings - we all need to do that. I am also impressed that you are exercising; I have been thinking about trying to do some yoga too. I am happy to hear your existing mets have shrunk, + sorry to hear about the new two. You have the right attitude!

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

So glad you're counting your blessings, and I hope the future will hold only excellent results.

*hugs*
Gail

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

i got 35 day of radiation in my lymph nodes , they radiate through the stomach and trough my
ribs , no major side effects! no burned skin , just some tiredness last weeks but manageable.
Hope it helps.
Hugs.

dmdwins
Posts: 453
Joined: Aug 2008

Hi Tara....

You speaking of the bone mets made me think of Robinvan. I know that he no longer posts here(I sure miss his smiling face)but if I recall he had sacral mets and I think he was receiving radiation. I know he has a caring bridge site. I havent checked in on him since November but I think it is rob-pollock.blogspot.com??? Such a great guy...Im sure he would share his experiences.

Keeping you in my thoughts and prayers.

Smiles,
Dawn

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geotina
Posts: 2121
Joined: Oct 2009

I, also, follow Rob's blogs. He has not updated since December 23rd and that is unusual for him. He has been going through a very difficult time with bone mets to his sacrum for quite some time. He was able to get fixed up enough to walk his daughter down the aisle in October and posted a video and pictures of the joyous occasion. He was also talking about surgery so maybe that is why he has not updated. He did post a thank you for the Christmas cards not too long ago and listed the names of his blogs.

Take care - Tina

taraHK
Posts: 1961
Joined: Aug 2003

Thanks Dawn and Tina. I will definitely try to check in with Rob -- I miss him here, too! and hope he is doing OK.....I feel very fortunate not have any symptoms yet from my bone mets -- but us bone met folk gotta stick together!!

Tara

dmdwins
Posts: 453
Joined: Aug 2008

I need to check in on him.....I really miss his bald,smiling face! I did know that he was able to walk his daughter down the aisle (what a blessing) and saw some beautiful pictures.
I pray that all is okay with him. Thanks for letting me know.

Smiles,
Dawn

taraHK
Posts: 1961
Joined: Aug 2003

Thanks, Pepe -- this is good news for me to hear. It helps!

Hugs back to you -- Tara

geotina's picture
geotina
Posts: 2121
Joined: Oct 2009

It sounds like a pretty good report to me. Things are being kept in check and the chemo is working so stay the course. Sounds like your onc is on top of things and has a plan of action in place and is thinking ahead and that is good.

Best wishes - Tina

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Tara,

I am sending positive vibes and hugs to you. You consistently amaze me. Your positive attitude will continue to get you through this. I don't have any advice on the bone radiation, hopefully someone will respond that has had it.

Maureen

taraHK
Posts: 1961
Joined: Aug 2003

thank you, dear friend. I just keeping one foot in front of the other! as we all do.

Thanks for your continuing friendship and support

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Tara,

I am sending positive vibes and hugs to you. You consistently amaze me. Your positive attitude will continue to get you through this. I don't have any advice on the bone radiation, hopefully someone will respond that has had it.

Maureen

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Tara,

I am sending positive vibes and hugs to you. You consistently amaze me. Your positive attitude will continue to get you through this. I don't have any advice on the bone radiation, hopefully someone will respond that has had it.

Maureen

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

Hi Tara,

Well, it really is mostly good news! That's wonderful that all of the already existing mets have shrunk & the one actually disappeared!!
I know it would be disheartening to me too to have the new bone mets appear at the same time others have just shrunken, but there is a plan & sounds like they'll be zapped out of there soon!
I'm glad you are still able to see the positive and have an overall good attitude.
You keep plugging away, girl!

Hugs and prayers,
Lisa

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