Wednesday, February 2, 2011

A Change in Treatment

It has been 2 weeks since Christopher was discharged from his last round of Chemo. So far, though his counts are very low, he has not fevered. Normally at 5 or 6 days out we are headed to the ER but I think because he started that last round with an unnaturally high ANC (due to the Nuelasta) he has hit a plateau. I am hoping he skates through the drop and is on the rise. His counts need to be at least 1,000 before starting his 4th cycle of chemo.
He has been feeling pretty good overall with some increase in fatigue and decrease in appetite the last couple days but considering the beating he took with his last round he is doing well.

Lawrence and I met with his Oncologist, Dr. Joyce this week to discuss just where Christopher is at with his disease process and to find out what his plans are for the final 3 rounds of this chemo protocol. Thank God for another set of ears as I tend to tune out when I have heard enough clamor and tune in just in time to say what is on my mind...always seeking the "bottom line" of course. (Thank you Lawrence for your continued support!)

Though some clarity was gained there was definitely no bottom line and still much uncertainty around Christopher's treatment options. One of the reasons we met with Dr. Joyce is that Chris was ready to call it quits after round 3 due and there was talk about the need to stop one of the drugs. Before leaving the room, Christopher let Dr. Joyce know that his last round of chemo was "hell" and wanted to know what options he had if he opted out of the last 3 cycles. He had had enough.
The discussion that followed, both with and without Chris present was very lengthy and I am not sure I could reiterate if I tried so I will summarize as best I can.

At this point, assuming there are no other signs of metastases, Chris has a 1/4 chance of survival. If he does have another recurrence his odds go down considerably. Though every attempt would be made to remove any more lesions that MAY show up, there is a limit on how much surgery can be done. Dr. Joyce did point out that for treatment of Osteosarcoma to be successful chemo alone will not work, that the surgery is really more effective and necessary.
We are assuming Chris is free of any tumors right now and the goal with the chemo is to keep it that way. The fact that he had a recurrence means he has disease running through his system that needs to be arrested before it can form any more tumor. Because there is still a good possibility of recurrence when this chemo stops, Dr. Joyce also believes it is necessary to do somewhere between 18 months and 2 years of Interferon treatments.
We asked if Chris' chance of survival would go down if he did stop chemo now and just do his scans and surgery when necessary. We also talked about putting Chris on a chemo pill that he could take at home and avoid life in the hospital. While it would pose some of the same side effects, it is a much more mild dose and not as hard on his system.
Again, no real definitive answers other than the current aggressive protocol is meant to "cure" Chris and keep him disease free. The other modalities (the pill form) would be considered palliative treatment and meant only to slow down the process. There is just not enough data/studies to really give him or anyone else in this situation many viable options.
My concern, like most of his family and friends, is that quality of life be considered a priority. So we are carefully still weighing his options.

On Friday Christopher will have a bone scan and an MRI of his leg to see if his disease has metastasized to any of his bones. He will have another Chest CT after his next round to use as a comparison to the one done after his first 2 cycles. This comparison should better define the areas that lit up on the last CT and are assumed to be scar tissue or blood vessels.
If all tests show no evidence of disease the plan is to finish the final 2 cycles of this chemo protocol. Dr. Joyce has decided also to discontinue the use of Ifosfamide due to it's harsh effect on the kidneys and replace it with Cytoxan. (the lesser of 2 evils I suppose)
If any lesions show up, chemo will stop and the priority will be surgery. Then the dreaded discussion begins again on what to do next. Considering Chris has maxxed out on the drugs most used to treat Osteosarcoma there was not even a guess on what the next step should be.

I know what Chris wants to do next...take a vacation to CA for his spring break and be done with chemo and surgery so he can plan a cruise this summer. So...until we know more I will leave it at that!
Thanks for hanging through this update. I hope it made some sense. Believe me it really is even more confusing and exhausting than it sounds!
Still...we have faith and hope and continue to persevere.
Much peace to you all.
Patty