"The Plan"

I put "the plan" in quotes because things are still up in the air. We had a long talk with Adrienne's onc on Wednesday with the intent to go back on the trial, adding IV hydration twice a week, while watching things very closely. At the first sign of trouble, the plan is to go off. After this discussion, we reviewed Adrienne's labs and for some reason her kidney function was way up (up is bad with kidney function). She got hydration yesterday and today in hopes that her numbers come down but it's possible she won't be able to start treatment on Monday no matter what, and then she's off the trial permanently.

Of course, we discussed next steps if she goes off the trial. Both her onc here and her onc at City of Hope think chemo is a bad idea, that it will only suppress her marrow, and give her no benefit in terms of reducing her disease. In all probability, we'd choose to stop treatment for awhile and then enroll in another clinical trial when her disease starts to grow again. SGN-35 is showing great promise but they aren't allowing patients with allo transplants and they aren't granting compassionate use applications. But you know me, I'm not going to give up that easily so I'm working on a strategy to put pressure on the company to give Adrienne the drug outside of a clinical trial.

Otherwise, things are fine here. The weather is absolutely gorgeous and Adrienne is feeling well enough again to get out. School is going great for her although she misses the challenge of CMC. Daniel has recovered from his dog bite and the dog is now in "pit bull rehab." The other choices were to put the dog down or keep him in a full body muzzle. Hopefully this dog won't hurt anyone again.

Biopsy Results

A lot has happened today. This morning, we found out that Adrienne has to restart the trial by next Monday or she's out so preparations are being made furiously to get her started again. This afternoon, I called the urologist about biopsy results. Originally they told me it would take 5-7 days but they were back today. The oral read was chronic and acute cystitis with ulcerations but no cancer (we didn't expect any but still it's nice to hear). While Adrienne is feeling better, we don't know if any healing has happened and we don't feel like we have a good understanding of the risks of restarting treatment. She sees the onc in the morning so we can decide. I told Adrienne it was totally her decision but she's afraid, of course, that things will get out of control quickly and she'll be as miserable as she was before. I've written about her problems at a fairly high level, but suffice it to say, this has been one of the worst, most painful experiences she's been through in her 12 years of cancer treatment.

Adrienne's onc at City of Hope says we should give it a try with mesna and hydration and hope for the best. If the symptoms even begin to reappear, then she should go off. That sounds like a reasonable option. I'm waiting to hear back from her onc at Stanford/LPCH. I'll write more tomorrow after all the opinions and plans are in.

Biopsy done

Our morning started a little rocky with a dead battery but luckily there's an extra car here. Apparently car batteries don't last long in the desert. Now we know why Adrienne's car went through a battery in just a year too. My car is running okay now after a jump but it will probably need a new battery soon.

Adrienne is doing fine after the biopsy and is feeling pretty good already except for some unexplained itching. Her urinary symptoms are much improved over the last few days but the doc said her bladder didn't look any better than it did 10 days ago. I'm not sure what that means but he said she probably needs two more weeks before restarting the MGCD. Adrienne really wants to get back on it but only if they can do something to protect her bladder. The onc says they can try mesna and/or IV fluids but of course there are no guarantees that this will work. Biopsy results will take about a week and then we can decide if and when she'll restart the trial.

They Talked!!!!

Adrienne's onc (Dr. Dang) and the urologist (Dr. Leo) touched base this morning. While Dr. Leo thinks this is cystitis, he can't be sure that she doesn't have bladder cancer. Oh great. We don't for a minute think this is bladder cancer but we'll continue to play the game. Adrienne seems ever so slightly better, and if things continue to improve, she may be able to skip Friday's biopsy. We're just going to play it by ear for the next few days.

Saturday night was Light The Night here and the turnout was amazing. I had been to two in the Bay Area and they weren't nearly as large. They even ran out of balloons before we got ours, but all that matters is that the fundraising was successful. Gus came along too. I don't know if he enjoyed himself but the socialization was good for him, and he laid in Adrienne's lap the whole time while we ate dinner. He's such a good puppy.

"Chemical Cystitis"

Aha, finally we seem to be zeroing in on Adrienne's problem. The Medical Director with the study sponsor (Pharmion) says “that we have seen cases of chemical cystitis.” They are leaving it up to Adrienne's doctor to decide if she can stay on the trial and he wants to keep her on it. Now the goal is to figure out how to get this to clear up as quickly as possible so she can go back on the drug. I've asked the urologist and oncologist to talk to each other (what a concept!!!) to see if there's anything we can do to treat this. We'd like to skip the biopsy and go straight to treatment if at all possible. Stay tuned.

UPDATE: A couple of people have asked why Adrienne can't stay on MGCD and deal with the cystitis at the same time. The problem is there's no way for the cystitis to resolve while on it. The cystitis is very dangerous as the urine can "leak" out of the bladder into the surrounding tissue and cause sepsis.

You asked for pictures of Gus, so here goes.



Adrienne and Gus taking a nap together.



Poor Gus with his cone.



Caesar and Prince finally decided that Gus could stay.



Caesar stealing Gus' toy (notice the bandages on Gus' legs from the dewclaw removal)

Cystoscopy - More Tests

Adrienne had the cystoscopy this morning. I won't describe the faces or noises she made, but I gather that it was quite unpleasant. She's feeling better now and went off to school on her own. When I say better, I mean better from the procedure, but not better from her bladder symptoms. The doctor actually showed me the inside of her bladder on a TV monitor. Some of it is normal but much of it is red and inflamed with some fungus looking stuff that I don't know how to describe. He seemed a bit perplexed but I think that might just be his natural demeanor. In any event, the next step is a surgical biopsy on Friday, October 23. At least she'll be asleep for that one. They're also running urine cultures to see if there's some other infectious process going on besides bacteria. In the meantime, Adrienne is off all treatment and will not be able to continue on the MGCD in all probability. What's next? I wish we knew but, of course, we're looking into other options.

Gus has been truly entertaining lately. He's up to a whopping 4 pounds but he acts a lot bigger. Curt calls him the house terrorist because he barks at the other dogs and then runs under the furniture where they can't catch him, making us all laugh. Last Friday, he was neutered and had his dewclaws removed. Now he's walking around with a cone that's bigger than he is. The vet's office also says he's adorable and they carried him around all day, even taking pictures. Adrienne is madly in love as are all the rest of us.

Postponement

I found out this morning that MGCD does, in fact, cause cystitis (thank you Susan for pointing this out). After several inquiries, the decision was made to postpone Adrienne's treatment next week until we find out exactly what the problem is with her bladder. She sees the urologist on Wednesday for a cystoscopy. Worst case...the MGCD is causing hemorrhagic cystitis. If it's caused by the MGCD, she probably won't be able to continue on the trial. Hopefully, this is something treatable and she can continue because this drug is working well for her. Still, she can't live with these bladder issues.

About the Same

Adrienne is doing about the same today but she took herself to school as she had a midterm in her bio class. Daniel, on the other hand, is the proud new owner of a handful of stitches, 9 of them, from a bite from a pit bull. Daniel thought he was playing but the dog is so big and powerful. Daniel has pain but hopefully the vicodin will take care of it. He feels bad that he had to report the dog but it's the law. We don't know what will happen next but California has pretty strict rules about dogs that bite.

No fistula?

Yesterday afternoon, Adrienne started to have trouble with the catheter again so I removed it. Luckily, the nurse in the ER showed me what to do the night before. Adrienne felt pretty awful yesterday so she skipped school. This morning, she saw the gyn and he doesn't think it's a fistula and wants her to see the urologist again. Frankly, this is getting old. Adrienne isn't feeling any better but at least we're getting better at managing her symptoms with pain meds and so on. The urologist appointment is next Wednesday. Let's hope we get some answers.

ER Visit

Thank you for the all the nice e-mails and comments. It really does help.

Adrienne got the catheter late yesterday afternoon and was very, very uncomfortable, more than seemed normal. Getting it in wasn't too bad but then she had pain with it and leakage. Finally, at 10 pm, after I couldn't reach anyone at the doctor's office, we decided to head to the ER. The ER closest to us was packed so we decided to head down the road to the same hospital we visited when Adrienne was bleeding last month. The waiting room was empty...my kind of waiting room. After much going back and forth, the catheter was removed. It turns out it was too small. Another one was inserted and then that one was leaking too. After three hours, the natural spasms you get from having it inserted went away and it was working correctly. We finally got back at 2 am to find Curt and Gus sleeping together. It was adorable.

Adrienne is feeling better this morning and things seem to be working fine. They did a urinalysis in the ER and her urine is full of bacteria as well as blood. So much for the last 10 days of antibiotics. She sees the doctor tomorrow morning. They're going to do a test where they put blue dye in the bladder to see if it comes out of the uterus, which would mean there's definitely a fistula there but we may continue with this conservative management. Hopefully this catheter will continue to function normally.

Conservative Management for Now

We have a bit more news this morning. The gyn wants to try conservative management (catheterization) before doing surgery to see if the problem can resolve on its own. We're also trying to get Adrienne's radiation records to see how much radiation this area received. Her ped onc thought that this area was totally shielded but there's always scatter so I have a message into her rad onc. We should know more after she sees the gyn on Wednesday and has yet another test. Otherwise, this latest course of antibiotics has helped a bit so at least she's more comfortable, not happy about having a catheter, but she definitely prefers that to more surgery.

Vesico-uterine fistula

After posting yesterday, I was able to talk to the PA at the gyn onc's office where Adrienne had her surgery in early September. They are fairly sure that she has what's called a "vesico-uterine fistula." There is little information out there about this as it's a rare complication that usually happens with C-sections in developing countries. Great! It appears that Adrienne's rare combination of chemos and radiation and possibly the clinical trial drug made her susceptible to this. Basically, there's a lesion between the uterus and bladder so the fluids go between these two organs. The doctor's office wanted us to go to the emergency room to get a catheter right away. Adrienne declined vehemently so she has an appointment first thing Monday morning for the catheter and will see the doctor on Wednesday. As long as she doesn't get a fever, this isn't an emergency and we'd prefer to avoid an ER full of sick people. I expect that she'll have surgery on Thursday, probably a hysterectomy and repair of the bladder. If this can be done vaginally or laparoscopally, she should be able to stay in school. However, I'm not sure that we should do this here in LV and we may decide to go to Stanford. I have a message into her onc there asking for his opinion.

Adrienne is pretty miserable right now but is hanging in. It's just so unfair that she has to go through this now.

Good and Bad

I love the radiologist at NVCI. He watched while Adrienne had scans today and then called right after comparing them with the last ones. The good news is that her disease is stable, the same in the lung and a little smaller in the spleen with no new disease. We'll take it!!! The bad news is that there's a definite problem in the uterus and bladder. He suspects a tear or leak between the two so there's blood and urine going between them. No wonder Adrienne is having so much pain and strange bleeding. Since she doesn't have a fever, this isn't emergent but still important to resolve. I suspect that Adrienne will be having more surgery soon and will post as soon as we know what's up. She definitely needs a break.