I always try to come up with a catchy title for this blog but I'm not too feeling creative right now. Today I have nothing inspiring or witty to say and I don't quite know how to describe the current situation.
Adrienne had a PET/CT on Thursday as we wanted to see how she's responding to the chemo before continuing. Obviously, we don't want her to have all the side effects that go with chemo unless she's getting a benefit. We hoped and expected that her disease was responding well. What we got was a mixed picture that no one could figure it out. On Friday, she had a CT with contrast to get more information. Here's what we know: the tumor in her spleen is virtually gone, the tumor in her lung has shrunk about 30%, and there's some new activity in the hilum (near the lung) and in the subcarinal area (near the esophagus). Both of these are quite small (under 2 cm). There's also some diffuse activity in the mediastinum that apparently has been there but we didn't know about it.
So what do we do? It's a judgement call at this point. There aren't any trials open right now (though something is coming soon) and Adrienne has had all the other chemos out there. Her onc talked to the head of the lymphoma service and we all agreed to continue with this chemo for a few more cycles. Her big tumors have responded so we know it's doing something. After nearly two days of questions, she had chemo at a reduced dose yesterday. We added another antiemetic (Emend) and hope that helps control her nausea better. Hopefully the other side effects, especially the neuropathy and low platelets, are better this time. She's going to see the doctor once a week and we'll just watch things closely.
I keep expecting things to get easier or to get a little break, but it's just not to be.
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Adrienne was diagnosed with Hodgkin's Disease in 1996 at age 9. She had multiple relapses, two bone marrow transplants, and a range of chemos and radiation therapies, and passed away on October 1, 2009. We are heartbroken.
Out with the Girls
About Adrienne
- Adrienne
- Adrienne was very much like others with Hodgkin's Lymphoma, the most common cancer in teens and young adults. What was unusual is that she had it for more than half her life and ultimately, it took her life. Hodgkin's is curable for about 80% people, but Adrienne was one of the 20% for whom a cure was elusive. She considered herself lucky since treatments had been there for her with each relapse but she ran out of treatment options and her body just couldn’t take any more. As she said, "Though I’ve now had cancer for most of my life, I no longer plan my life around it; instead, I try to plan cancer around my life." We hope you can take inspiration from her and how she lived her life.
8 comments:
Dearest Adrienne and Alison,
I was hoping by today the doctors would have better, more informed answers for you and the results of Adrienne's scans. It baffles me (as I'm sure you two as well), that no one is able to give you a direct response to why or how Adrienne's tumors have acted they way that they do.
It's amazing how you two keep putting one foot in front of the other, and although I may seem redundant in my words, I am always in awe of both of your strength and persistence of this disease. You both truly teach others, how to take things one day at a time and take life for what it is.
I wish for both of you - a much needed 'break' sometime in the near future. Tons of smiles, good platelets for Adrienne, and one of these days.. a catchy 'title' for you, Alison. ;)
Know you are both loved. xo
Hoping chemo goes well this round,
B
Hi Adrienne and Alison,
After reading your post, I'm a bit lost for words. Indeed, the news about her lungs and spleen is fantastic, but what about the other areas. As there has been success with the current regime, there's obvious potential for further gains there.
I just wish this whole experience wasn't so taxing? Why does success have to oscillate so?
Sending love to you two. :)
Oh, the hateful gray area results . . . so hard to process. I hope that continuing the chemo continues the good trend of tumor shrinkage without too much cost in side effects.
Best to you both. Time to pile on the treats, I think.
Karen, Clare's mom
You certainly do deserve a break Adrienne. I am hoping that you will soon get that break both physically and mentally.
Best wishes to you Adrienne and I will continue to pray for some downtime from all of this.
Hi Alison,
Dont know if you saw it, but I remembered this article someone posted on the list -
http://www.mdanderson.org/publications/conquest/display.cfm?id=a24bf56d-a42b-430a-bbd3a429a0012e33&method=displayfull&pn=f55eefe6-65a7-4cda-b7670f5143bac6c9
Maybe they have something of help, I am however glad that Adrienne has a response to the treatment, and I wish you all the best.
hugs
Gitte
Hi Adrienne...Is the Emend working better for you??? I hope you were about to be outside in the beautiful springish day we had today and felt up to going to a movie with your friend tonight?
Wishing for lots of platelets and no more bruises this week. Keep your chin up Adrienne...you are an amazing young lady. As always...loving ((HUGS))
Susan
Hi Adrienne...hope the weekend was "side effect wise" uneventful..."coed wise" - fun : } I'll email mom to see how you are doing.
I hope you have a great week...and get to enjoy some of the great southern California weather we're having.
Love,
Susan
Hi Adrienne,
Thinking of you. I hope you're having a good week and not feeling too tired or stressed out.
Love you guys,
Karen (t.o.g.)
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