Herpes Zoster????

Adrienne's pain seems to be getting worse rather than better. At the same time, her lungs sound clearer so we think that the vinblastine did something. Without anything showing on the CT and without other symptoms, the current thinking is that the pain might be nerve pain caused by herpes zoster, commonly known as shingles, but without the skin lesions. Her pain is in the area where you would get shingles and it's possible that the virus is affecting the nerves below the skin. She's starting antivirals today and we're keeping our fingers crossed that this is the problem and, overall, things are better than what they seem. Not surprisingly, Adrienne is feeling pretty down right now, tired of the pain and fatigue, and also some other unpleasant chemo side effects.

Adrienne had an aranesp shot last week but her counts are still low so she needs a blood transfusion. That'll happen either tomorrow or the next day and, hopefully, that'll perk her up a bit and make things seem more positive. In the meantime, we're holding off on treatment and focusing on making her feel better. Then we can reassess.

Getting better...now what?

Adrienne is definitely feeling better. She's only taking 1-2 pills each day for breakthrough pain and once that's over, we'll think about tapering the rest. She saw the doctor today and her counts are still really low but she's feeling okay. Tomorrow she'll get an aranesp shot rather than a transfusion (her choice). We're trying to figure out what to do next, either go to New York and start a new trial or do another chemo here. The doc is really worried about her marrow so we discussed the possibility of doxil at a reduced dose. I sent an email to the cardiologist in Miami to make sure it's okay before we make any decisions. Add to that, City of Hope received the SGN-35 protocol and we understand that it's a therapeutic dose so that's good news. Her doc there thinks it'll be about 6 weeks until the trial opens; we'll figure 8 weeks just to be safe. She may need another biopsy so we need to check on that because it would probably mean an open lung biopsy, not exactly a fun proposition.

In the meantime, we're trying to enjoy some of the summer. We may head to Santa Barbara next week to see Daniel, who has a nasty eye infection. I hope he went to the urgent care clinic tonight as I asked him to. He's planning to come here for his 21st birthday later in August. I'm not sure how much fun I'll think that is but I'm sure he'll have a great time with his buddies.

Home...barely

We had to beg to get Adrienne out as she's still neutropenic but her pain is under control with the oral meds. Yeah!!! The current thinking is that this pain is due to the Vinblastine, not the Neulasta shot. Hopefully, it'll resolve itself over time. Meanwhile, she's taking high doses of oxycontin and neurontin, which makes her very drowsy, but relatively pain free. Thank you so much to everyone for your prayers and kind thoughts. We aren't out of the woods yet but we're looking forward to a quiet (HOT) weekend at home.

Oops

First, when moderating comments tonight, I accidentally rejected some. I hope you'll leave Adrienne a note again if you don't see your comment. We're overwhelmed by all of the love and support and she appreciates every note, as do I.

Adrienne is still in the hospital but seems to be doing better. She took a couple of walks today and is eating solid food. She's still needing the IV dilaudid but not as often. Tonight, they're upping her oxycontin and neurontin so hopefully that'll do the trick so she can come home. She's now neutropenic and will probably need blood tomorrow but we're still hopeful that tomorrow will be the day.

You're probably wondering what's causing all of this pain. We had originally thought it was the neulasta but now they're thinking that it's nerve pain from the vinblastine. Some of it could be from tumor but that certainly doesn't explain the extent or intenseness of it. Hopefully it'll go away on it's own. Right now the goal is to get her out of the hospital and then try to figure out the cause next week.

Still there

Adrienne is still in the hospital as her pain isn't under control yet. We're trying to get her on oral meds but she still needs the IV dilaudid. Hopefully, we'll see some improvement soon. At least her mouth is better but she has little appetite even though I keep bringing treats in.

In Hospital

Adrienne is in the hospital now. We had her admitted yesterday afternoon after giving her everything we had at home. I was concerned about overmedicating and drug reactions, so after calling the clinic, we agreed to so in. She dropped her class at UNLV, which is no big deal, but it's a prerequisite for most of the classes she planned for the fall. She's been on IV dilaudid every two hours since being admitted and this afternoon we started to get her on oral pain meds. She still isn't pain-free so she'll keep the IV as long as needed. If the pain is from the Neulasta, it should go away on its own in a few days. If not, well, we'll deal with it then. The mouth pain is much better and she even ate some fried chicken for dinner. Except for the pain, she's actually doing okay, no shortness of breath, no weakness, nothing.

Except...I went downstairs to get her some ice cream and came back to find a neutropenic sign on her door. After a bunch of checking, she really isn't that neutropenic but they're being extra careful. They wanted to give her a Neupogen shot, which would likely give her even more bone pain. Huh? I made them call the doc and the shot was cancelled but I expect her ANC will be almost nonexistent tomorrow. We had hoped to get her out of there on oral pain meds but now I don't know. We'll see what tomorrow brings. For now, she's resting fairly comfortably.

Miserable

Adrienne got the vinblastine last Thursday with little fanfare and no nausea. She didn't feel up to going to class that evening, but that's probably because Curt and I talked her out of it. Friday and the weekend were a different story. Between the mouth pain from the vinblastine and the bone pain from the neulasta, Adrienne has been absolutely miserable all weekend. She took as many pain meds as she could but you can only take so much and it wasn't helping. Last night, she finally got the right combo and was able to sleep but woke up early this morning hurting again. Since taking yet more pain meds, she's feeling a bit better now. I have a message in to the nurse to get some Magic Mouthwash, which should help her mouth pain at least. We can't tell if her former pain is gone yet because she's hurting so much all over. Hopefully this won't last much longer as she refuses to go to the ER for IV pain meds.

Vinblastine it is

Adrienne saw the new oncologist at NVCI yesterday to get counts, assess her pain, and determine how to move ahead. Her CBC showed low hemoglobin, which is typical when she has a lot of disease, making her pale and tired. Still, she finished the first summer term and started a new term on Monday. Her lymphocyte count is almost nonexistent so she needs to be extra careful as this makes her susceptible to opportunistic infections. Her CT showed a small problem around the bile duct that connects the liver and gall bladder. The elevated alk phos confirms this so it's something we need to watch. This liver issue surfaces from time to time and typically resolves on it's own so we'll just keep an eye on it.

On to the pain. NVCI has a new pain doctor who spent a lot of time with us yesterday. Both she and the oncologist did thorough pain evaluations and no one can figure out where Adrienne's pain is coming from. There's nothing on the CT that explains it and pressing everywhere doesn't make it worse. We can only assume that it's coming from bone lesions. She's had these before and they can be quite painful. We got several new prescriptions so she can escalate as the pain gets worse, and hopefully, she'll have less breakthrough pain.

The general feeling is that everything showing in Adrienne's lungs is disease so we need to move ahead with treatment. We made the decision to do vinblastine every other week. This is the "V" in ABVD. Adrienne never did ABVD but she's had vinblastine before, though not since 2002. With Hodgkin's, you can often go back to old drugs and we're hoping that's the case now. She starts tomorrow (Thursday) and we're counting on this being relatively easy.

More waiting

We're in a bit of a state of flux right now, trying to figure out the next steps. Adrienne's pain seemed to get a bit better when she started the antifungals but now it's back to where it was. She'll see the doc tomorrow and we hope to start her on something that's easily tolerated. We got confirmation that SGN-35 will be available in September but the dose might be too low to have any effect. We'll just have to wait and see what the trial looks like.

I've had my own little bit of "excitement" with vertigo, headaches, and stomach problems the last week or so. I totally forgot that I was hit in the head a couple of weeks ago with an enormous outdoor umbrella. My symptoms seem a bit better yesterday and today, with just some dizziness and blurred vision remaining. The doc said it could last a few months but I'm hopeful that this will be gone sooner.