Yesterday, we got the actual PET and CT reports and it looks like Adrienne's disease is actually growing again in her neck. While the node is quite small (6 mm), this is concerning because it means that Adrienne is no longer responding to the chemo. In the past, she always responded and even had long periods of remission. Adrienne's doctor is out of town so we spoke with another doctor and decided to go ahead with yesterday's chemo as originally planned, hoping that it would at least keep things under control. We probably won't know more until tomorrow.
We met with the BMT team yesterday and signed the consents for the DLI but it seems unlikely now that we will go in that direction. DLIs have not been effective in people whose disease is unresponsive to chemo. In that case, the risk outweighs the benefits.
We are still planning to go on vacation on Friday. We really need the break, especially now, and are looking forward to getting away.
UPDATE: I spoke with Adrienne's doctor this morning. He would like to take a "watch and wait" approach to Adrienne's PET. If the node gets bigger, they will biopsy it (and remove it at the same time). Otherwise, she'll have another PET scan in 4 to 6 weeks time.
Adrienne will have her last chemo on July 19 and the first DLI on July 26, hoping that the DLI eradicates any residual disease. The doctor thinks that the node is small enough that the DLIs could help. She will get four DLIs, starting at a very low dose and working up to a higher dose, hoping she doesn't get any graft vs. host disease.
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3 comments:
Alison and Adrienne,
That's not the news you want to hear. Hopefully her onc will have some tactics and a plan. It's an excellent idea to still go away. My next door neighbour and her two daughters just came back from six days in Montreal and she can't stop talking about how great it is (much to her relief, almost everyone speaks English!). I hope you can work up your appetites for the deli smoked meat and a beaver tail--maple syrup and cinnamon is the best.
Sending all positive thoughts possible for your spirits and a smart doctor.
Love,
Jacquelyn
Alison and Adrienne,
I am sorry you have to fight this battle yet again. You are a strong duo! My prayers are with you and the family.
Enjoy your "Getaway" you all deserve a fantastic time.
Many Hugs,
Nancy, Matthew's Mom from Peds-onc-surv
Alison and Adrienne: I hope you're having a wonderful trip. Hard news to hear, but I'm impressed at your talent for fighting this disease.
Alison: thanks for your kind email. It helps to hear from those who know exactly what we are about.
Karen, Clare's mom
www.caringbridge.org/md/clareschmidt
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