Having a scan? Waiting on results? The waiting room is open!

Zillenot4me, That sounds good, I mean the scan results and the cookies too.

Well, for once, I am the bummer in the room. Progression.... but still low grade activity, she says.

To refresh, my scan three months ago showed that my original mets which had been MIA for four years, were back with a few new ones, and that vague changes noted on the Left Rib, could be a fracture. The chest wall and pleura lining mets have grown and made babies. Well, as I suspected, it was no fracture in my rib either. That one has grown as well. And since that isn't enough good news for one day, my right rib [which I have been complaining about for 18 months] is also popping up little mets. There is also something on my liver. They called it a focal point, with no measurement. The recommendation is that I should have an MRI to evaluate since the PET doesn't do a great job imaging the liver. {SHIT SHIT SHIT!]

She is putting me on Xeloda, an oral chemo. Silly her, she suggested I take it with me on my big Window-of-Opportunity trip, but I declined. After she adjusted to the fact that I was actually leaving, she agreed that starting a chemo in a country where I certainly do not speak the language, much less the medical language, was nuts and we can wait until my return. Instead, I had another set of Faslodex shots so that the cancer didn't get six weeks to get stronger.

I will have an MRI on the 26th, another oncologist meeting on the 28th, and start the new treatment as soon as I receive the drugs from the specialty pharmacy. I was not expecting regression, I am not surprised about the first rib met being for real, but am quite devastated that there is already another one on the other side and possible liver involvement.

*susan*

Caryn and Kebab - Yeah

Susan - ugh.  Good for you going on your trip.  enjoy every moment

Love this thread.  Scans to be scheduled for June sometime - hate the waiting for them to be scheduled, hate the waiting for results, hate the whole process

Oh,susan, I know how devastating this news is. I'm so sorry. There still is a good chance that the liver is not involved. It sounds like a very vague description, and if the radiologist didn't state, "suspicious for metastasis" or something similar, maybe it's a benign abnormality. WTH is a "focal point", anyway!

I do want to say that I have had EXTENSIVE bone mets- all ribs, all of my spine, my skull, and a small met in my hips, for four years and it hasn't really changed my quality of life. You know you can live many years with bone mets. Mine are still stable in the bones. There is a great chance that your bone mets can be handled with the next treatment. I am really hoping for a negative MRI of your liver, and I think there's also a very good possibility that it will happen.

I hope you are able to put your worry aside and enjoy your vacation. {{{hugs}}}

nbnotes,

I could not help but notice that you live in Temple Terrace. I live in Ocala, but was a resident iof Tampa for many years and I still go to Moffit Cancer Center for treatment. (I am currently on a clinical trial there). Is this where you receive your care? Maybe we can meet in one of those waiting rooms!Feel free to PM me!

So sorry to read of your progression Susan. I don't blame you in the least for wanting to wait until you are back from your trip (which sounds amazing!). Fingers crossed for no liver involvement and that the Xeloda kicks some bone met butt for you when you return.

yeah for great results!! I have yet to figure out a good way to wait for the news, thankfully CTCA a is extremely prompt with everything. I've never waited more than 24 hrs for any result and most are done the same day. I guess the question is, if CTCA can get it done so quickly, why can't everyone else??

Susan, I'm sorry you are dealing with progression but am inspired by how you're dealing with it. Really, what was your doctor thinking? Starting Xeloda on a dream of a lifetime? Hope the liver is clear by the time you get back. Travel is good for the soul, so it must be good for the immune system.  The trip might have some cancer cells heading for the hills.  

Zillsnot4me - Congrats on your scan. Woo Hoo! Thank You, Lord!

Susan - Sorry about your progression. You will overcome this like you always do - with faith and fortitude. Good for you to tell the oncologist you won't do chemo while on vacation.

Prayers for all.

- Penny

VivianS - I got a 2nd opinion at Moffitt, but I am getting my treatment through our local Florida Cancer Specialists. There are a group of us that meet periodically though in Tampa that you'd be welcome to join.

I just went through this as well. Bone scan was pulled ahead and scared me to death--looked like new mets and progression. But the doc said he thought this could as easily be tumor flare--and from the results of the CT scan, it was--lymph nodes shrunk by 30-40% and no new mets. Yay! I was worried that I would be kicked out of the trial I'm in, where I'm getting eribulin which has been a really easy drug for me. Because of the way the bone scan report was written up, they had to call the national team running the trial to keep me in, but that team agreed. So I'm good for another 12 weeks at least, and I hope longer!

My CT scans are now finished, and the obsessive checking of the (not so patient) Patient Portal begins!

Congratulations nred. I'm glad you will be able to stay on your trial!

soundsike fun. Wonderful day for it