Realistic Expectations

[Arisgram]

I seem to be one of the fortunate ones for whom tumor markers work. My CA 27-29 fluctuates very closely with my disease level.

Early in December I had SBRT to my thoracic spine and sacrum. The radiation oncologist told me I may have some fatigue for a couple of days. He didn't mention any kind of subsequent aches or pains. I feel like I was in bed most of the month exhausted and achy in places completely different than those treated. I've tried to just write it all off to the procedure even though the doctor was surprised to hear I felt so badly.

They just posted my most recent tumor marker which was drawn last week. It hasn't dropped at all. I have to say, I'm pretty bummed. Does anyone have any experience with SBRT and tumor markers? Does it take awhile for them to drop?

Because I have elected to get a second opinion at MD Anderson, my next scan won't happen until mid-March. Ugh. Always waiting.

Thank you for any info you may have!

Andi

[Hidden]

I have been MBC for a bit over two years now and at my cancer center, my oncologist says that tumor markers are not indicators for anything going on and that they can go up and down and it means nothing in sense of the disease. That being said, I have never once knew what my tumors markers were.

I never had radiation but I had a friend that did and said the same as you. She was extremely fatigued and had aches and pains. She said (she was stage ii) that she found the radiation harder than the chemo.

MD Anderson is supposed to be the #1 best place to go so no point in getting all stressed out until you have your scan done there. March will be here before you know it.

[Arisgram in reply to Hidden]

Thank you. I hope you continue to do well!

Andi

[SoCalLady in reply to Hidden]

For some, maybe tumors don't mean a thing. For me, I think they do. When your tumor markers double every month for a year and are over 1500, something is going on and my onc agrees. When my new medicine lowered them by 500 points, we both think that means something.

[Arisgram in reply to SoCalLady]

Sounds like good news! I hope that's the case!

Andi

[Rbeth in reply to SoCalLady]

What was your new medicine? Reenie

[SoCalLady in reply to Rbeth]

Piqray

[Nmartinez15 in reply to SoCalLady]

Mine went down when I start treatment and now it's normal again.

[Hidden in reply to SoCalLady]

I guess all oncos have their different methods. Where I go in NY, they do not use tumor markers (the onco dept.). They said it is normal to rise up and down and it does not mean anything so they do not use in them in any decision-marking process. But different centers and oncos have different thoughts.

I hope the reduction for you means that your new medicine is working then.

[diamags in reply to Hidden]

I go to Chicago and they also do not look at tumor markers. However, with that said, if they went from 45 to 1500, there's cause for concern. I think where things get crazy is worrying if they go from 11 to 32. They are not pinpoint accurate. But large swings would be cause for concern.

[SoCalLady in reply to diamags]

Exactly, and common sense.

[Barbteeth]

Hi there

I had SABR to my liver last July...and just like you I had extreme fatigue...struggled just to change my bed linen and it took months to feel anything like normal...I feel that the side effects were ‘played down’ and I was a bit cross as I expected I would feel better much sooner

I would hesitate to undergo this again

My markers haven’t come down since

However another lesion appeared and instead of having SABR again I’ve had to change my meds from Ibrance and letrazole to Afinitor and exemastane

Barb xx

[Arisgram in reply to Barbteeth]

Thank you, Barb. How quickly did your second met appear after treatment? I have 2 very specific, new "spots" of pain: one in my neck, one between my shoulder and spine (rib?). Between that and the marker not falling....

I agree with you on doing the SABR again. Maybe if I have to, it will be less frightening because I know from my own experience what to expect. My boyfriend, who is a colleague of the rad onc, called him about the effects. He was shocked that I had fatigue past the first weekend or any aches and pains at all!

Ugh.

Thank you for your reply. Pat Bugsy for me!

Andi

[Barbteeth in reply to Arisgram]

Hi Andi

I was told the side effects would worsen for two weeks then go away..not true...and I’m a tough old bird

The new met was picked up on the PET scan I had about four months later...I was so upset because the sabre has got rid of the original one...a few other places in my bones also lit up hence the change in my systemic treatment

Good luck with your treatment

Barb xx

[Arisgram in reply to Barbteeth]

Thanks Barb. I know you've really struggled with the change.

The hell of it is, I know all of this comes down to the next scan. You can fret and speculate and stare at your lab values,.....and bug your friends on a message board.... but it just comes down to the next scan. I should just hush!

[Hidden]

I don’t know about markers as my doctor doesn’t use them but radiation takes every bit of life out of you and you will get a flare up of pain. I did with both of my radiation treatments. Rest and lots of fluids.

[Arisgram]

Thank you Sarcie. I know I have complained about this before, but the new specific pain points combined with the stagnant tumor markers have me worried. I'm second guessing not changing my meds when the progression was first diagnosed. Freakin' cancer. Thank you again for responding.

[Hidden in reply to Arisgram]

This disease always has us second guessing every decision 😞

[PJBinMI]

I'm a long timer with MBC (this 3/1 will be 16 years since diagnosis, denovo MBC) and have been to a number of bc and mbc conferences and one of the things I heard early on was that some oncs don't use TMs because they are not reliable for some of us plus they can cause unneeded anxiety. That said, I've had the CA27-29 done before almost every appt with my onc and though I have done exceptionally well and am on only third line treatment, my CA 27-29 has only been in the normal range for a few weeks. The oncs that do use them, generally don't change treatment on the basis of TMs only but either watch them over time or order scans when there is a noticable increase. My own though is that they seem more precise than they are since they are numbers and we are used to numbers being precise. About realistic expectations, this blasted cancer is so individual and unpredictable, I think alot is hard to anticipate! I sure never expected, when I was first diagnosed, that I would still be here this many years later. There is alot to be hopeful about. More treatment options, better diagnostic tools and more and more of us living longer and longer. I think the thing

that makes this the hardest is the lack of control we feel! We can keep doc appts, take our meds, get second opinions, but all tht without any guarantees! (I have two cats rubbing against me and the computer screen and it is probably only moments until they walk across the keyboard, so I'm saying goodbye now! lol)

[mariootsi in reply to PJBinMI]

You are so right. It is the lack of control that is one of the worst parts of this mbc nonsense.

[Arisgram in reply to PJBinMI]

What is it about our cats always wanting to type? I can't keep mine off the keyboard!

You are right about never knowing what to expect. I am desperate for any clue to what is going on inside my own body, and the truth is, without a scan, it's all speculation. Thank you for your wise words. I will know when I know.

Give those kitties a pet for me!

Andi

[PJBinMI in reply to Arisgram]

It just occured to me that I've had a sense of "something going on" when I've had progression. Kinda like my body telling me that something wasn't right. That may be happening again--I've had two MRIs and am waiting for a nuclear bone scan to be scheduled. Lower back pain. Not clear yet whether it is bone met related or other back issues. I've had stenosis in my lower back since at least my mid 20s and have had two back surgeries so we're having to figure out what the heck is going on now. I've not had radiation at all and am hoping this is a structural thing and not cancer but whatever it is, I'll deal with it when it's figured out.

[Arisgram in reply to PJBinMI]

I certainly hope it isn't new mets. You are very calm and matter of fact. I hope I can develop that attitude!

[mariootsi]

I wish you well at MD Anderson.

I had radiation during my first dx and was totally exhausted also.

It really does take awhile to recover.