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A Bit of an Update

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Hi Tracey,

Hope your feeling better soon... My one granddaughter has to use antibiotic ear drops quiet often also as she gets a lot of ear infections...

Hope the Dr can find out for you if you have endo... My daughter just had a complete hystorectomy this spring shes 31, I had to have one at 40, both of us had severe endo...

Keep us posted...

((( Caring hugs )))

Helen

After a sleepless night due to pain in my left ear, I got an afternoon appointment with my GP today, and actually came away with some answers and results! She said my ear was full of what looked like puss, took a culture swab so we'd know for sure what it was, and gave me a prescription for antibiotic ear drops, explaining that even if the culture is negative for infection, the drops would help clean the ear out. The antibiotic in the drops is the same as what I'm currently taking orally for a UTI (Urinary Tract Infection). I wonder if that's why my ears suddenly felt worse when I started taking the oral antibiotic, because my body was trying to fight both infections at the same time but the oral wasn't quite strong/direct enough to fight the ear infection. Does that sound reasonable?

With 's help, I was also able to convince her to give me a referral to a gynecological surgeon to explore the possibility that I have endometriosis. My Spina Bifida has resulted in poor circulation in my legs, which leaves me at risk for blood clots, so treating me with birth control for "possible endometriosis" isn't the right course of action. I'm hoping the surgeon will agree to doing a laporoscopy(sp?), and I'm most likely going to tell her that if she does find endometriosis, to go ahead and do at least a partial hysterectomy. and I decided a long time ago that we didn't want children, so the idea of having my uterus removed doesn't bother me. I worry about the possibility of having to have a full hysterectomy, though, because I already have osteoporosis, which I know estrogen production helps.

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  • 6 months later...
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I 'visited' Dr. Kipps on Tuesday. I had to wait two hours to see

him, which is about par for the course, as I understand it.

I wanted to pass on some of what he said to me, minus of course that

which was regarding me alone.

I asked him about the gossypol (AT-101) trial, which I understand is

still going on. He indicated that the results so far seemed to

indicate the response was mainly in shrinking the lymph nodes and

spleen. The white counts seemed to be relatively unchanged.

They have started, I believe a variation of this trial pairing

gossypol with rituximab, in the hope that the gossypol will shrink

nodes and the rituximab will hit the blood and bone marrow.

Contrary to the impression I got from the postings of a guy who is on

the gossypol protocol, the trial participants who have had elevated

liver numbers, Dr. Kipps said that that occurred in a minority of

patients.

Dr. Kipps indicated that they were pleased with how the agent was

going, and they hope that it will pass more drug hurdles.

The HDMP+HDR clinical trial (high dose methylprednisolone and high

dose rituximab) has been pushed back further; they now expect the

trial to start in perhaps May or June.

The CLL Research consortium has received top marks on their

application, which has been noted elsewhere; however, funding has not

yet been realized. They are hoping for good news sometime down the

pike.

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