When last we left off, I had received the results of my bone biopsy, but my next treatment was still TBD. The uncertainty was difficult, but as Dr. Sara promised (and he's never broken a promise to me yet), by the time of my next treatment, he had a game plan in place.
He had consulted with his colleagues at Sloan Kettering, and they agreed that the new drug TDM-1 was the best option for me. I would also be taken off all the other chemo I had been on previously, so I will only be receiving the TDM-1.
This drug had JUST hit the market and in fact was so new that I couldn't get treated that day since insurance hadn't approved it yet. Eugenie, Dr. Sara's nurse practitioner, who was working on getting all the approvals, said they practically had to get the White House to approve it! I would be the first person receiving TDM-1 at Roosevelt Hospital.
To give insurance time for all the approvals, I rescheduled treatment for the following week. Although I was supposed to go in the morning as usual, the day before treatment Eugenie called me to tell me to come in the afternoon since the drug wouldn't be arriving at the hospital until noon. I imagined the drug arriving like the Stanley Cup, complete with a white-gloved escort!
Even when I arrived at the hospital around 1pm, the drug "was in the building" but hadn't yet arrived at the oncology pharmacy. But luckily, I didn't have to wait too long.
Since this was obviously my first time getting this drug, it was administered slowly over a 90-minute infusion. Future treatments will be faster. Of course, as is the case with any new drug, there was a risk of a reaction (like what happened when I got the Pertuzamab the first time), but luckily I was reaction-free this time.
Like the Herceptin and the Pertuzamab, this drug has minimal side effects. I will have to keep getting MUGA scans to monitor my heart, but luckily every MUGA scan I've ever had has been normal (including one just a few days before my first TDM-1 treatment). I did notice some achy-ness in the days following treatment. It could have been a side effect, but it's hard to know for sure. I guess I have to wait and see if it happens again. Either way, it wasn't too bad, and is definitely something I can live with.
The best news of all is that I WILL BE GETTING MY HAIR BACK!!! This drug does not cause hair loss, so almost a year since I started losing it again, I'll be getting it back. It will be nice to have real hair again and not have to rely on wigs all the time - I am really looking forward to that!
One other new development that I think I forgot to mention last time - I am also starting to receive a drug called Xgeva, which is given to help my bones build back up from the tumors. It's not a chemo - in fact it's more typically given to osteoporosis patients - and it doesn't really have any side efffects either. I will get this shot once a month, and had the first one when I got my bone biopsy results. No side effects to report!
So now, I am just hoping and praying that the TDM-1 lives up to its hype and does its job. Time will tell. Dr. Sara was also encouraged by some additional news he got from his colleagues at Sloan - they told him they are working on the "next generation" of the TDM-1 drug, and so it is good to know that that is also a possibility down the road should I need it.
For now, I'm going to send positive vibes to the TDM-1 running through my body, and will be staying on the lookout for healthy new hair to start growing back soon!
Fingers are crossed for you and that the new drug works well. Love that you have a doctor that is so on top of the new breakthroughs and how quickly they are working to get it in use. I can only imagine all the red tape with insurance!
ReplyDeleteThank you so much for keeping us all posted ... I have you in my prayers !
ReplyDeleteMore positive vibes to the TDM-1 from me too! Fingers and toes crossed too! Great news about your hair...you sure can rock a pixie cut! It looks so good on you, not that I haven't been liking that blonde wig lately! Thinking about you! :-)
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