Shingles and chemo, the final word

Today I saw award-winning infectious disease specialist Dr Martin Siegel and he affirmed what Dr G said: be careful about chemo and shingles. So I am decreasing from 1 g valacyclovir 3x/day to 500 mg 2x/day FOR AS LONG AS I AM ON CHEMO. Dr S says he has lost patients who restarted chemo too soon after shingles, hence the long term use of this medication now that my shingles are healing and beyond.


No, I am not eligible for the shingles vaccine, even to ease another outbreak. If I get shingles again, I'll just have to live with it. 


Because I knew Dr S would want to examine me, I never put on a lidocain patch today, and even this late in the day I feel fine. Some itching, but nowhere near the kind of pain I'd been having, even as recently as last night. I am still wearing a Fentanyl patch and will talk to Dr G about decreasing the dosing. I still have plenty of lidocain patches and Vicodin for breakthrough pain, but it appears I am healing. Dr S says the itching is a sign of healing. 


Since I appear to be healing, Dr S thinks I may be lucky and avoid post herpetic nueropathic pain. Let's hope so. 

In other good news, Drs G and S agree that I should stay off chemo while awaiting gamma knife (scheduled for Monday 6/20). I won't restart chemo for at least another week after that.

Trying to stay balanced

I felt so well on Friday that I did too much, including wearing my contact lenses for twelve hours. The backlash on Saturday was awful and preventable. I need to balance my meds more effectively.

Although I spent an hour or so at shul, I should have come home. I only used half of a lidocain patch and it wasn't enough but I was too stubborn to add more later in the day when I can only wear them for twelve hours. I should have done it anyway.

I took some Vicodin but it didn't kick in soon enough and most of the time I was zoning out. I should have taken my daily dose of Ritalin but hadn't. So much for balance.

I napped in the afternoon, then took my mid-day meds. Pain was really making me cranky! I put on my pajamas around 6 PM, ate some soup and tried to enjoy some Graeter's ice cream. I was so cranky that even more Vicodin around 7 PM barely took the edge off the pain. It was the 0.75 mg of Ativan that made the evening bearable. Again, so much for balance and for recognizing the pain symptoms.

I slept most of the night but my shingles pain also manifests with night sweats. After that middle of the night awakening, I took some more Vicodin and tried to sleep through the dog's begging to go outside. I lasted until 7 AM (which I thought was 8 AM), got up for real to let Bobka out, feed him breakfast, let him out again and type this post.

I might go back to sleep now; it's a quarter to eight in the morning and I could use a little extra rest. I already took my morning meds, minus the Ritalin, because I really do want some more sleep.

When I get up for real (for the third time), I will take the Ritalin, use more of the lidocain patch, drink coffee with breakfast, and aim for better balance so I can enjoy my day.

Shingles pain

I think I've finally found the right breakthrough pain combo -- two 5/500 Vicodin and up to 1 mg Ativan. A tiny 0.25 mg piece of Ativan helps remarkably and doesn't make me sleepy. 

But I had more serious night breakthrough pain again yesterday. I needed the full dose of both to get back to sleep. When the shingles pain hits me like that in the middle of the night, it's like my back and leg are on fire.

I complained of lower back pain for months and we thought it was mets on my sacrum, even had a scan to determine if there were more mets. I wonder if maybe this was early warnings of shingles? Every adult, unless immune suppressed, should get the shingles vaccination ASAP! See this article on why people don't get the vaccine.

Pain pain pain

I thought my shingles were under control and healing, when I got whammed by some serious breakthrough pain today.

After a day of pain misery, I have been told to switch back to Gabapentin from Lyrica. I had only taken four Lyrica pills (it was expensive!) but if it doesn't work, I need to find something that does.

I should still use the Fentanyl 50 mcg patch and the Lidocain 5% patch and have increased to two of three permitted three daily. I may try three tomorrow. I am to add two 5/500 Vicodin and 0.5 Ativan for breakthrough pain.

So far the Vicodin has helped a lot, enough to type at the computer.

I'm going to start the Valacyclovir again, on the theory that I may still have active shingles in my body.

My major concern? That all these narcotics will prevent me from driving or being focused enough to do the things I love. I have an appointment to see Dr Bufi the naturopath tomorrow and would like to make it there and back safely. I suppose this is what the Ritalin is for....

New plan

I saw Dr G today and he has come up with a new plan while I am still dealing with shingles. First he told me he'd read about a woman who developed shingles during her cancer treatment. She had chemo and the shingles spread and basically killed her. So our new plan takes things easy.

1) Increase the Fentanyl patch to 50 mcg to get better pain management.

2) Stop the Gabapentin and start taking Lyrica (pregabalin). Like Gabapentin, it's used to fight neurologic pain. As I heal from the shingles, I'm told I can expect to continue to have pain.

3) Use up to three lidocaine patches if I need more pain control.

4) Book an appointment to see Dr Martin Siegel, the infectious disease specialist who basically saved my life in 1999 by diagnosing Toxic Shock Syndrome after my original breast lumpectomy. He did the same again a couple of years ago when I was hospitalized with an unknown infection for 13 nights. He's part of my terrific care team and I look forward to seeing him next week. His job is to decide when the shingles has gone away and I can have chemo again.

Tomorrow morning we see Dr Sandra Vermeulen, the radiation oncologist who will talk about gamma knife vs. whole brain radiation vs. cyber knife to deal with my three brain mets. Bet you thought we'd forgotten about them! No, I'm sure they're still hanging out. More news tomorrow.

More on Folklife Saturday

I was sorry not to attend Dunava's special workshop with Tzvetanka yesterday, but my afternoon dose of painkillers (even taken early, at 330 PM) did NOTHING to address my pain. I would not have been able to sit down, much less concentrate on singing, just like my experience on Friday night at our rehearsal with Tzvwtanka, and those were songs I knew ALREADY!

I remember I said to Dr G my goal was to perform at Folklife. He said the same. I never mentioned the workshop, the big concert that continues for several hours after we perform, or Sunday night's  Balkan dance. In my experience, you get what you put out to the universe. I probably should have mentioned the other things, but I didn't want to overload my requests to the system.

I basically got into my pajamas Saturday afternoon and tried to ignore my pain. I have to come up with a better daytime pain management plan. I slept well last night (of course I took a dose of gabapentin at bedtime), but there was a big gap of pain coverage yesterday between 3 and 11 PM. Maybe I should call my doc today at home instead of waiting for when I talk to him during Monday's chemo.

I would like to be able to stay for the rest of this afternoon's Bulgarian concert, and I would like to dance at the big Balkan dance tonight. .... sigh ....

Folklife!

We had a great time at the NW Folklife Festival this afternoon. I woke up at 7 AM feeling fine, took some gebapentin for pain control and some valacyclovir, then went back to sleep. We got up for real at 9:00. After a big waffle breakfast, Rik walked the dog for his usual Saturday two miles while I got ready for the Dunava performance.

We had a quick run-through in the Center House lobby and were in place back stage early. Our guest artist was late and so even though we thought we could start our set early, we ended up beginning right on time and had so much material that we ended up cutting one song. (Folklife is sticky about starting and ending on time.) The audience was very responsive and I think it was a good performance. I will try to post some video Rik shot.

After our set, I was very hungry for lunch. We met up with friends and decided everyone should get their own favorite food and gather on the International Fountain to eat. Rik and I ended up with Indian food from a restaurant we often go to (but we're not sure it's the same place, so I don't want to say the name). I had chicken masala over rice and salad with plenty of  extra sauce on the side. Rik enjoyed a chicken kebab over rice. Prices at the food booths have definitely gone up over the years - each plate came to $8, and Rik's mango lemonade was $3.

We caught up with friends in the sunshine, talking about shingles, gamma knife treatment, and other and sundry physical health issues. Then the women decided to shop before getting dessert.

We browsed through most of the market. C bought shoes; Rik and C bought a Folklife t-shirt; G looked for a cool pair of earrings but no dice. As we parted company (some to stay and dance, others to crash), Rik and I noticed three hatters in one general area. I bought a terrific rusty brown raffia hat which is size adjustable. I think it will be prefect for shul this summer. My dessert was a chocolate mousse crepe with caramel sauce and whipped cream; Rik got a friut smoothie.

I had taken the next dose of pain meds and antivirals at 3 PM. Even so, I was completely steeped in pain and cancelled on the 4-6 PM workshop we had with our guest artist from Bulgaria. There is no way I could have learned new music while feeling uncontrolled pain.

Perhaps I am being overly sympathetic to my doctor, but I don't feel that this is enough of an issue to disturb his Shabbat rest. I will take the third doses of everything at bedtime,  which should give me a good night's sleep. If Sunday's pain is again unmanageable around 3 PM, I can call Dr G's answering service. Plus I will speak with him on Monday when I go in for treatment. You can be sure I will report these afternoon tough spots and ask for an increase in the gabapentin (neurological pain med).

Tomorrow's schedule includes showing up on time for the Radost concert sound check and being ready to sing at 3 PM. Dunava opens the show with two very short Bulgarian songs; then we accompany the Radost dancers for one number. About an hour later, we accompany the dancers for a second number. Given how I feel this afternoon, I think I will end up at home Sunday afternoon; maybe call Dr G to get his take on pain; and if I feel better, come back for the big Balkan dance Sunday night. This is a perpetual favorite dance and I will forward to seeing friends from all over at it. Hopefully I will see them tomorrow!

Shingles

Believe it or not, this is good news!

I called Dr G this morning about a rash that appeared overnight on my leg and he said to come in before the MRI scheduled for this afternoon. One look, that's all it took -- shingles!

When combined with the kind and spread of pain I'd been complaining about all week, the appearance of red vesicles (rash) enabled him to out all the pieces together. He immediately cancelled the MRI and started me on valacyclovir and gabapentin.

It will take quite a few days for the infection to clear up and perhaps longer for the pain to reduce. Gabapentin will also make me tired and I shouldn't operate machinery (i.e. drive a car) while taking it. I will stay on the fentanyl patches also, since one is supposed to increase the gabapentin slowly to a maximum of three per day.

I had chicken pox as a child and the odds favor that I have carried it around in my body ever since. There's little doubt low immune counts from the chemo caused me to be more susceptible to a flare up. That's also why I couldn't have the shingles vaccination. It's a live virus vaccine and would have put me at risk to develop shingles, which I did anyway.

The Centers for Disease Control and Prevention website says,

Shingles cannot be passed from one person to another. However, the virus that causes shingles, the varicella zoster virus, can be spread from a person with active shingles to a person who has never had chickenpox. In such cases, the person exposed to the virus might develop chickenpox, but they would not develop shingles. The virus is spread through direct contact with fluid from the rash blisters, not through sneezing, coughing or casual contact.

A person with shingles can spread the virus when the rash is in the blister-phase. A person is not infectious before blisters appear. Once the rash has developed crusts, the person is no longer contagious.

Shingles is less contagious than chickenpox and the risk of a person with shingles spreading the virus is low if the rash is covered.

So I will cover my rash, swallow the huge valacyclovir pills (1 gram, the size of my thumb!), and hope the gabapentin controls the pain soonest, plus remember that shingles is NOT MORE CANCER.