inoperable, but clean scan at 15 months (now 39 months)
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That is so great, Catherine!
I admit I have been reading your posts very closely, even though our situation is slightly different since my husband has multiple tumors in his liver, on both sides. Our plan is to be doing the Y-90 at the end of his 3rd gem/cis cycle, in about mid-September. But if we could get a good response from the gem/cis to start the shrinkage and then a good ZAP with the Y-90, to “kick the can down the road” a bit….
Do you know where Dr. Moeslein is going? (We are at Hopkins but had noted his name for down the road when we may need other opinions, so I am wondering if he’s leaving the area completely.)
We’ve been told there is no possible cure unless surgery, and we were told no remission, but we are still so fortunate that Mom’s blood work and scan still show no evidence of disease- dead tissue still there from the last Y-90 treatment in Nov 2014. Since then, routine scans, port flushes and blood work. Next time we go back is Jan 2017. Even if not “cured”, we are elated and wish all could be lucky enough to have these results. On ride home from hospital today, we talked about how glad we were that Mom tried chemo- she was given 12 months and told the chemo would on average give her another 3. The first chemo cycle almost made her give up, but she pushed through and after they added fluids and steroids, she was able to tolerate it well.
One take away- our ONC today said she probably would have been like our prior ONC and pushed back on Mom having a second SIRT (Y-90) with the xeloda rather than waiting for the tumor to progress again (First treatment had killed about 1/2 of it and we were stable for 6 months). I had to ask for us not to wait, wanted to attack while we could, and fortunately had a brilliant radiologist who also wanted to “kill” the whole thing. The only sad part today is that Dr. Moeslein- the doctor who saved Mom- is leaving UMD. Today was his last day.
I’m not sure if this is a miracle so Mom is here to take care of Dad (lung cancer), but rather I hope her results are indicative of a trend for us seeing this disease not being a terminal diagnosis but rather as Marion has stated, more of a chronic disease.
Best wishes to all- Catherine
Hi Kathy,
She was diagnosed at Upper Chesapeake ( Bel Air), then had unsuccessful surgery attempt at UMD. If it was just the ONC, we probably would have gone to Hopkins for a second, but we have been thrilled with the radiologist- I have no doubt Mom is alive today because of him. With all she has going on with Dad now, he said we could wait until August to come back for next scan. He said to consider he cancer dealt with for now. We never envisioned a treatment-free survival for Mom, but we’ll take it for as long as it lasts (I’m still hoping for the cured like surgery results- or fine if not cured but doesn’t grow for 20 years)
Although UMD is huge and has the tumor board, after spending time at Hopkins with Dad for the lung cancer, I did feel like I stepped into a hospital like no other. There were doctors doing rounds at 5am and MRIs at midnight (not a sleeping hospital).
I love when you have time to check in- yours is a story of so much hope too and I love hearing how things are going. I can’t wait for the day when seeing the 5+ year survivors here is the norm.
Take care,
CatherineCatherine, I just noticed that you are in Bel Air. I am in Maryland also, but nearer to Columbia (although in Montgomery County). Where did you mom go for treatment? I have been at Johns Hopkins. I am so glad to hear that she is doing well and thank you for all your support on my postings….Kathy
Thanks everyone. It would have been difficult if it came back now; Dad starts his 2nd chemo cycle for lung cancer on Tuesday, so Mom is in the caregiver role. She’s even been driving again so she can take him to the chemo and some of the doctor visits.
We’re still are driving down to Baltimore to see the ONC today (really not sure why- blood work all looked good). I’m not sure if she’ll try and push us off to 6-month scan cycle. She tried that last time, but she said she thought it had been 2 years (it was 1 since SIRT at that time ). SInce Mom never had surgery, I’m not sure if we’ll ever feel comfortable going more than 3 months, but we’ll see what she recommends.
Best to all,
CatherineCatherine, revving up to do cartwheels! What great news, really doesn’t get much better than this. YIPPEE!
Catherine….that is just awesome news. Not seeing anything to treat…..what wonderful words. Relief…you betcha!! So happy for your mom and your family,
Julie T.
yeah!!!!
Response from Mom’s IR after reviewing her CT/PET; we meet with ONC tomorrow, but didn’t know if we would need his talents again:
“Actually there’s no reason to see me. I don’t see anything to treat. The liver remains in remission and I do not see anything outside of the liver that is hot.”
Very happy and relieved. And. very nice that we get the good news a day early- he is our hero.
Catherine
Oh my! So happy for you. My husband has been diagnosed with cc on sept . No. Resectable because where it is . Near porter vein, had chemo but didn’t work. Going for second treatment with chemo and radiation . Praying it work this time. Thanks for sharing.
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