Heard at the hospital conference room
Thursday January 12th 2012, 12:08 am
Filed under: Friends,Lupus

I took my knitting but it stayed in the bag. I didn’t want to miss a word.

I had extra incentive to go to my lupus support group today: a representative from Human Genome Services, the company that makes Benlysta, was there.

Benlysta being the first treatment for lupus approved by the FDA since, I kid you not, 1955. I think corticosteroids were still extracted from cadavers back then.

The rep was a registered nurse and she knew her stuff and she clearly loved being able to offer good news to patients, at last, at last. She said that now that that monoclonal antibody finally got through, there were more in the pipeline targeting other cells too.

She answered a lot of questions from the group.

I told her I’d been put on Remicade (when it had a black-box warning against its being given to lupus patients) when it was still experimental; we’d had to read about every single mouse that had sneezed before deciding to go ahead with it. It saved my life, so, hey, sneeze away! But after it was approved, all that trial information seemed to vanish–granted, this was going on nine years ago. You know, back when the Internet was still in training pants.

Then she gave us something useful for every patient everywhere: she told us go to clinicaltrials.com and type in your disease.

Someone finally did that?! (Knowing how bad the problem has been of clinical trial information not being shared lab to lab and manufacturer to patients.)

Go check it out.

Cool! (I just did, and it seems a lot smaller than I hoped but it’s a start.)

One of the things she did say was that if you’ve had cancer it rules you out for Benlysta.

Basal cell? I asked.

She considered a moment and answered, Talk to your doctor. (In other words, not a no. Good.)

She handed out her card so we could ask her personally more later if we wanted. Very nice. I laughed in delight when I saw it, then had to explain: my friends back home in Maryland will get it when I say Shady Grove Road. Cool!

And her last name: Hawkes.

Okay, c’mon, now, is that perfect or what? For me, at least. Love it. Ms. Hawkes, your namesakes put on quite a show around here.

After she left, some of the younger patients did too and suddenly it was just us oldtimers left. We talked.

One, it turned out, had just been put in that definite-no category. Bigtime. That was such an unexpected piece of news; we held her in our arms and our love and each of us asked to be asked to do things to help. Chemo is rough stuff. Let’s keep in touch more than this once a month thing.

Cancer clears out the emotional debris and leaves only the things that are most real: the caring. The desire to make things better for each other. Love made luminous.

Lupus does too, but in slower motion and often far quieter colors.

I am so glad I didn’t miss that meeting. That was why I most needed to be there. I’d had no idea.

5 Comments so far
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hugs for your friend. I will pass the clinical trials info on to my daughter. Thank you

Comment by Sherry in Idaho 01.12.12 @ 7:26 am

Fabulous website. Prayers for your friend.

Comment by Channon 01.12.12 @ 8:14 am

There is so much bad news floating around, that when something good turns up, we can all rejoice. Cheers for both you and the support group!

Comment by Don Meyer 01.12.12 @ 10:21 am

A clinical trial was how we could afford further chemo for my late husband. Pancreatic cancer is at about the same level of research as lupus. In order to pay for him to take a breast cancer chemo, we had to get him into a clinical trial.

Cancer is a beast, but it does bring out the love in our relationships. I will always be humbled at the love shown to us when we were going through cancer. I’m glad you could show that love to your friend.

Comment by Pegi 01.12.12 @ 7:13 pm

I haven’t been by in awhile. Life has been interesting since I last spoke to you. I have had to have my prostate removed, good news is that we got it before it started spreading. Bad news is living with the results of not having a prostate. I saw a Nerologist to get his opinion about whether there was any thing to be done about the complicatons of life without a prostate, to kind about him he didn’t give me much hope for correcting anything due to pre-existing nerve damage due to the HIV. I will takl to my therapist on Thursday for a reccomendation to another nerologist who may at least do a nerve condution test before giving up on me. Life goes ahead and, we survive. My latest complication is cardiac arrhythimia. I have an appointment with the cardiologist on the 6th of February to see what he has to say about it. The HIV is under control and, I am actually doing better than I was 20 years back.

Comment by William DuBois 01.17.12 @ 5:08 pm

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