petscan good news bad news
 

I am super depressed, and honestly, I avoid posting because I am still grieving the loss of Sheila, Brenda, Chrisy and others. And now the news of Christine. Nothing feels very steady right now, including my own health. Seeing the clinical trial data from last year also just brought up all the sad emotions of friends I've lost to this stupid disease. It's all a bit much for me to handle, I'm feeling very overwhelmed and unsure of what to do next.

I need to meet with my doc to discuss the results of my latest PETscan. Good news/bad news scan results - Good news: the lung mets are gone or in radiologist speak: "non visualization of previous" and left adrenal gland SUV is 1.8 previously was at 7 and improvement noted. I'm guessing that the add in of Perjeta made the difference. BAD news is that the sclerotic disease at L1 is considerably more metabolic by 50% and SUV is 12 from 9.5. Sternum is highly active, but SUV actually decreased, so I don't understand why it was noted as more active - always leaves me wondering if the whole report is made up of connected mistakes.

Was thinking of going back to xgeva and in 12 weeks repeating the scan or doing a bone scan to see what's what. OR, I can try what's behind door #2 - Kad-psycho-cyla. I hesitate because chemo is involved and the s/e's will be worse than what I have now, don't know if TDM1 will work on all the bones stuff and don't know if I even want to continue...and what would I do if it didn't work - how could I go back on what I'm doing now - who will pay? So that's it for now - it's what has me very down and tired.

Re: petscan good news bad news
 

I'm so sorry to hear this. I share your bewilderment about mixed scan results. And I, too, grieve for lost friends and group members.

The "chess game" of mapping out a treatment strategy is wearisome, isn't it?

I hope it does you some good to know you've been heard here on the board. You're not alone.

Re: petscan good news bad news
 

SoCalGal, as Amy rightly points out, you are not alone with us all here. I'm sorry you are feeling as you do, but it is understandable. I hope things will be clearer once you see your doctor, and that you feel stronger.
Thinking of you.
Marie x

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Flori, You have been a tower of strength here and you are entitled to a little "wobble" now and then. It is hard with the losses of our sisters lately, I feel that, too- once you reassess with your doctors and get a plan going, I hope it brings you some peace of mind. Take good care. Ceesun

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Hi Flori. I think many of us feel the same way about the losses we have had in such a short amount of time. Good days, bad days, hopeful days and hopeless days... We have all been there. I pray that God will lift up your spirits, give you courage. We will continue to be here, support each other, just like our angels did for us. Hugs to you !!!

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Oh Flori,
I feel the pain and confusion in every word. Try to hang in there, my friend.
You are a treasure here, and we're all standing with you!

Sending love and light your way..
Denise

Re: petscan good news bad news
 

Boo! Crap. So stressful. I know that you are discouraged, but why not try Kadcyla - it may suck, or it might not be as atrocious as you are expecting.

Ouch. On the other hand my girlfriend's scan always seem to get misread, mixed up with other peoples, etc.

We've had so much bad news, maybe you are a lucky one up due for some good news.

Re: petscan good news bad news
 

Flori

Were you ever hormone positive? I am just thinking out loud here but hormone positive cancer just loves the bones. So, in thinking out loud, if Perjeta worked well on the highly her2+ cells, then what might be left behind are those that are hormone positive. Hence, they have lots of space to grow. What about testing out an AI or Faslodex shots (that cover the ER receptor) and see if there is an improvement (while staying on everything else you're on of course).

Just an idea. Something may have changed in the bones since ER+ cancer likes them best. If they were always alittle bit hormonal, there might not have been anything to shut them down so preferentially, they grew as Perjeta/Herceptin etc does nothing for that.

PS - this is would be an experiment but not a risky one and your onc might go along for a couple of months

Re: petscan good news bad news
 

PET scans light up wherever more glucose is being used than normal--in bones the cause can be fracture, infection, inflammation, or cancer.


Now I really don't know if the pattern of your PET or the accompanying CT or your lack of pain or tenderness (I suppose since you didn't say) is such that they can rule out stress fracture or other causes with absolute certainty(or even if there is any such pattern) , but since it is a long-weekend and you may not reach your doctor
immediately, how about imagining it is something nicer for now.

Your ideas of how they might try to decide which it is if there is uncertainty ( trying time--with interval healing if fracture--and denosumab and/or a bone scan sound logical. It might even possible they will do a biopsy if it doesn't become clear with time, I suppose. If they do, and it is breast cancer they may find that it has changed(eg er- to er+_
and there might even now be more targets to aim for.

Hang in there and hug your dog.

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First let me say, crap on a crap stick! Next I want to say how in awe I am of our members like Lani and Becky who are so knowledgeable and bright. I hope their suggestions are helpful to you I have nothing to add to the conversation except to paraphrase Lani.
Keep the faith and hug that dog

Re: petscan good news bad news
 

Aww Flori, it seems like you have just about had it. You are sick at heart with the loss of Sheila, Chrisy, and now Christine being ill. Enough is enough!
And now, with the PET scan results in question - it is the last thing you want to deal with.
I say give yourself a break this weekend if you can. Just kick up your heels and do something out side the box.
Then, when you have a bit more energy, plop yourself down and decide on an action plan. Meet with your doctor - and - follow Becky and Lani's advice. Both are intuitive and both have something that you don't have right now; the energy to think and analyze.
Please tell us what treatment you end up on. You are a gem. We want to hear what your doctor recommends.
Love and hugs,
Kim (from CT)

Re: petscan good news bad news
 

SoCal Gal,
Sharing the bad times as well as the good is what makes this forum so special. With recent losses and mixed scan results of your own, it's no wonder you are feeling down. Others have made some good suggestions in regard to those bone mets, so a long chat with your onc might be in order.
Warm wishes.... Pam

Re: petscan good news bad news
 

I understand the sadness - it is very hard to hear about the loss of our sisters, and the inevitable "am I next" questions these losses bring up.

I have no advice for you. I'd probably try the Kadcyla but I've been following it for a long time and have been on chemo for years so don't have any issues with it. It will be my next chemo when gemzar and SBRT fails. But you have to do what you feel is right.

I always feel a bit better when I make a decision, unqualified as I feel to make the ones I have to make. Here's hoping you will too.

Re: petscan good news bad news
 

Hi flori....stay strong and positive....the pet scan always freaks me out until I speak to the dr....I am having one in 2 weeks.....don't assume anything, although I always thing the worst...the pet scan just gives dr areas to lok at more clearly with ct scans and mris..my last pet showed high activity in liver, but mri of liver was more accurate....I know exactly how you feel....eileen

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Thanks for the update, Flori.

Try to get some good rest first. We tend to be down when we are tired physically.

Remember you are the 'morning glory' ... You will perk up in the morning again!

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Flori,

Becky may be on to something. It is certainly worth a try. Brenda was only slightly hormone positive, very slightly, but she had a good response from anti-hormonal therapy.

Hang in there, Flori. You are so right when you say this has been one tough year for Her2Support. We have lost some of our best and brightest stars. It's all one big "ouch."

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Flori....I don't know what to say. I just wanted to offer you a hug here and my love and a heart that feels sad for all you are going through.

Love,

Mary Jo

Re: petscan good news bad news
 

It's so hard when the results are confusing And we are dealing with the loss of friends. Try to stave off the fear until you see your dr. There are, as you would know, many reasons for things lighting up on PET and you had that funny issue with the last one so try to take a breath, line up your options to discuss and go from there.

Re: petscan good news bad news
 

I understand your frustration with the pet scan results.
Pet scans have mind of their own.
Take a day or two off and do something "fun". Then go see the doc for a discussion when you are ready for it.
Maybe a chemo adjustment is all you need. Hang in there. Remember you are in this for the long hall. Take good care of yourself.

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Im sorry I didn't see this thread sooner. Did you get to talk to the doctor and see exactly what this scan means? Because that definitely is confusing. And yes, its hard to keep our positive fighting attitudes when we are losing so many members of the site this year. You said sometimes you avoid posting because of that, and sometimes I am scared to log in. It has been absolutely heartbreaking, and Im sure even moreso for those of you who have been a member much longer than I have. No matter what you have to post about tho, ups or downs, we will all be here for you, so don't ever hesitate to post and say exactly what you feel. Big hugs to you...update when you can. Sending lots of prayers and positive energy, and hoping you are feeling better soon.