April’s mom – update
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She is in Northern Colorado. Three cyberknife centers within an hour drive of her, which is exciting!
Yes, it is misleading! I would name it something like cyber-ZAP! Please let me know if she asks the doctors about CK. Where does you mom live? We are in Phoenix and very few hospitals have it. But, all we need is one and one great Radman!
I am so glad to read Lainy that Teddy has a routine that works that makes living with cc possible. I checked out the cyberknife and sent my mom the information, she has three cyber knife centers near her. I was glad you recommended it because I assumed knife = surgery and since hers is unresectable, I had assumed she wouldn’t be a candidate.
She recently registered for this site, now I just have to get her to post!!
Update: She and her doctor were surprised at the Mayo CT scan that indicated new tumor growth. It is possible, but there were difficulties in getting the CT scan (they weren’t able to use her port and there were issues with injecting the “dye”). They opted to continue Gemzar by itself for a few more weeks and redo the CT scan in a week or two and then reassess instead of jumping straight to Gemzar and Oxaliplatin. She tolerates the Gemzar so well that they were hesitant to switch it up so quickly.
Hi April! I agree with Louise. I came home from my recent surgery and 5 days later my daughter brought dinner over along with 2 of the 4 teen grand kids and it was a total blast! The best RX in the world. There is nothing like a grandchild to make you laugh, and feel good all over and show so much love.
Cannot wait for Halloween to go their house.
We are talking cyber knife again. Went to Teddy’s radiologist last Friday and we know something is brewing but after the words PET Scan in Dec. followed by cyber knife we totally relaxed again for the first time in a long time. Looks like Teddy’s pattern will be new tumor, zapped by cyber knife. We can live with that. Perhaps part of Thanksgiving is that all of us in all of our families will be giving thanks that we can get together. P.S. before dinner I go around the table and everyone has to say why they are thankful. Interesting through the years how the kids values change!April,
Speaking for myself as cc patient, I don’t care what or how many germs my grandson has been exposed to or is carrying. The emotional lift from being able to spend time with him would be tremendous, and I believe the adrenaline, hormones, and joy in living more than elevates our immune defenses. And the memories and photo opportunities will be even more precious as time passes. If the opportunity to visit actually occurs, go for the gusto! Those are the moments to live for. Is it time for a chorus of “Viva la more?”
Hope the visiting happens!
Louise
)I’m thinking of you, too, April. Love to you & your mum. I hope you all get together for Thanksgiving wherever you choose to celebrate it.
Thanks all for the well wishes. I have been meaning to look up info about the Cyber Knife. I will do that, thanks Lainy.
I started the other day reading about the Gemzar and oxaliplatin combination, but had to run. My goal is to read more here today about that because my mom did ask if I had looked here and what I had found.
I was happy to hear that her oncologist had already spoken with the Mayo doctor while she was still there and before they even came back he had her on the schedule for visit today to re-evaluate her path forward. I am just very pleased that after going through a few doctors in Colorado that she has one who she likes and who is aggressive with treatments and responsive to her inquiries.
My mom and stepdad want to visit for Thanksgiving and I hope that can happen. I would really love to have them here, but it also makes me nervous for her with my two little walking petri dishes who will want to love her and hang all over her and not to mention her having to make the flight over the holiday. We will work the details on that, but are more than willing to visit them instead if need be to avoid the crowds.
April we are very sorry to hear of your roller coaster ride and new results. One some shrinkage starts you might want to ask them about Cyber Knife. The “spots” have to be under 7cn. Best of luck traveling your way!
April,
Sorry to hear this news. I hope that the new treatment works for your mum. Positive thoughts coming your way.
Best wishes
Gavin
April…the added Oxaliplatin may very well cause shrinkage of the tumors as it has been used by other patients with good results. In fact, we have several postings regarding the above combination of drugs. The “search function” will lead you there if you so care to read up on it. In the mean time I am sending all my best wishes your way.
MarionApril
I’m very sorry to hear the news about your mom’s latest scans. I hope her new treatment shrinks her tumors so that microspheres or radiation can be looked into as futures options for her. Please keep us posted.
AshleyThanks all for the well wishes. I just phoned my mom as today was her visit with Dr. Alberts at the Mayo Clinic. It isn’t the good news we were hoping to hear. Unfortunately she now has more spots in just the few short weeks since she had her good CT scan.
We were hoping she would be a candidate for transplant since they are doing limited transplants at the Mayo for cc and she has no mets at this point, but that is not going to be the case given the number and distribution of spots on the scans and they do not expect her to be able to become a transplant candidate.
They are having difficulties analyzing the tissue blocks and are believing that she may actually have two types of cancer. She was initially diagnosed with hepatocellular carcinoma back in January. The diagnosis was changed in August or September to cc when they biopsied the recurrence – after sending the tissue blocks to Denver, Pennsylvania and then the Mayo. The Mayo finally called it cc after the others were inconclusive. The thought is that she may be battling both cancers. If this is the case she will likely also not be a candidate for clinical trials.
The new recommendation is to switch her from gemcitibine (yep, same thing as Gemzar) alone to Gemzar and Oxaliplatin when she returns home. Then explore the option of radiation or microspheres if they can get some shrinkage in the existing tumors.
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