Adrienne's pain hasn't improved, in fact, it's gotten worse so it isn't caused by shingles. I keep saying, who else hopes for infection but cancer patients? She got a transfusion last week and upped her oxycontin yesterday so overall she's feeling a bit better but we're still without direction. We had considered doing Doxil as some docs thought it would be safe even with her cardiomyopathy but I spoke to the doc at COH and he didn't think it was worth the risk because any adverse reaction would be catastrophic. Remember the oath: Do no harm. Okay, we're convinced.
But once again we're without direction. I'm hearing conflicting information about the SGN-35 trial and most things seem too dangerous to try. Since Adrienne has been so heavily treated, her side effects from everything are greatly magnified and she's getting less and less benefit. New biologics are the only answer. So, we're off to New York to talk with Dr. O'Connor. We'd prefer treatment at COH if they can, but otherwise we'll have to figure out how to go back and forth to New York. If anyone has spare miles on American or segments on Jet Blue, please let us know.
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13 comments:
Damn! That's the first word that comes to mind. I was really hoping that Adrienne's symptoms would have subsided and am very sorry she is still going through this. Jaime is with Delta now, but I'll ask if he knows of anyone with cheap passes for another airlines. United flies from Las Vegas to the DC area, but I don't know about NYC. Hugs to you both, Janet
Yeah, the cancer world is weird that way--I've often found myself overjoyed to hear that someone has pneumonia or mono . . . .
I hope the next plan comes together soon.
I'm not an accruer of miles, unfortunately, but we are in Maryland near DC so if we can drive you anywhere from here, we will!
Karen, Clare's mom
Wish I had a magic wand to wave over Adrienne and wish her pain away. I'm sure she's just darn tired of it! Sorry you are hitting more stumbling blocks with the SGN35. Hoping and praying that Dr O'Connor will have something up his sleeve as he always does. I have some Delta miles that you could have if you needed them...we won't be using them and they are due to expire in Sept. if we don't have any activity on the acct.
As always - sending love and ((HUGS))
Susan
I am so sorry that Adrienne's pain has not improved; I have been thinking of her. I am hoping for relief for her soon and a good plan as well.
Kelly (kittycatmom)
Still thinking of Adrienne and wanted to check in again to see how she's doing. I really hope the pain is solved soon and leaves her alone! Sending good thoughts to you...
Kate
Hi Alison
I have United miles that you can use. Unfortunately my American miles expired, but you're welcomed to all my United miles, if that helps
-Chri
Ah damn...Hmm... I hope you find something efficient real quick, I'm sure there is something and I will pray for it.
All the best,
tadpole
UGh......hoping the meeting with Dr O'C brings a smooth path ahead....<3........Vx
I just hate to hear that Adrrienne is still suffering from pain. :( I hope that Dr. O'Conner has some new ideas for you. Always thinking of you. XO
Oh Adrienne, don't know what to say except my thoughts are with you and your Mom... I hope Dr. O can come up with a formula that works (I know he will) -- at least something to do the trick until the SGN-35 situation unravels (wish I could give you some of mine...). Glad to hear the pain is under better control and hoping you're able to get out and enjoy yourself here and there.
Take good care and all the best :)
Alison, I'm sorry to be so late to the conversation, but I have AA miles you're welcome to. I don't have a lot, but if they can help in any way, just let me know - they're yours.
Love to you and Adrienne,
Lisa
just thinking of you guys today...
erin
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