It’s been quite some time since my last post, my apologies. I received mixed news over the last month or so and I reacted to the negative side of the news by not wanting to talk or think about my cancer. What I found out was that a major contributor to my lack of depressions was being on Adderall at the same time. While this might sound like at least neutral news, it isn’t. People usually develop a tolerance to Adderall in a few months, when used for depression, and the effect is already starting to wear off for me. So more depression is on the program, which is depressing in and of itself.
There was good news. My PSA, measured from cycle to cycle has gone from 50 to 9 to 5. The Lupron and Casodex are still clearly working. I continue to be nervous about how long this will last, though. They typically fail 2 years after treatment is started, and I’m at 2.5 years now, more or less. The anxiety before I go in for my PSA test results every other month is near crippling. When the drugs fail, it means I have 2 years left, on average. There is precedent for the drugs lasting much longer in rare cases. My oncologist has a patient who’s been on Casodex alone for 9 years. I’m hoping for a break like that.
For the most part I’m doing OK. The majority of my depressions are mild. I’m still traveling and having fun with my wife and friends. But it feels surreal that all will end fairly abruptly, although that can happen to anyone at any time. It’s just that near certainty that my life will end decades before my actuarial time to die that pushes me to focus on my mortality. We’re all dying by definition, but I really feel as if I’m dying now. Maybe you have to have a terminal illness to understand the difference, but it’s real and it’s scary. In the meantime I just try to stay as upbeat as I can and cope with the depressions as they come.
I got a CAT and bone scan today, along with a blood draw to check my PSA.
A lot has happened since my last post (ignoring the repost right before this post). It’s been seven weeks since my last Lupron shot. As is usually the case week seven is when Lupron’s effects subside. Now going off Lupron doesn’t seem as good an idea as it did when I was in the throes of its side effects.
I met with my GP and he suggested that for the really killer depressions, of which I typically get one per Lupron shot, that I take an Adderall to try to counteract it. So now I have that to try.
I also met with my oncologist. To sum it up, there are no good alternatives for Lupron for me. After talking over all my stomach problems, he wanted to do a CAT scan, The CAT scan, I believe, is mostly being done to rule out a stomach cancer met. He also wanted to do a bone scan to see how much further it’s spread and the usual PSA test. Those labs were all done today.
I asked him about Marinol (medical marijuana) and was surprised to find out that he can prescribe it. AFAIKnew it wasn’t prescribale in Texas. With luck it will help with the upset stomach, nausea, and depression.
With Adderall and Marinol I’m willing to try another Lupron shot, which is tentatively set for next Friday. That assumes we get no surprises back from all the tests today.To find out about that I wait until this coming Thursday…
On the TMS front, I finally got to speak with a TMS practitioner and got a bunch of questions answered. He's a researcher, though, who runs clinical trials with drugs primarily. It's been months since he's had a TMS patient, because there are no more clinical trials his group is involved in now. Several places I've read the most powerful predictor of a successful outcome for a given doc for most non-trivial procedures is the number of times they do the procedure. As a result, I'm going to pass on this provider, but the stats sound worth trying it somewhere else, at least for me.
The procedure is typically one session a day, five days a week for three weeks. Each session is about an hour long with 45 minutes of actual treatment. It is important that the sessions run consecutively – no week or two week breaks for a vacation in the middle of the procedure. Cost is about $12-15K and insurance rarely covers it.
The most recent data shows about 50-60% are able to reduce their meds by half and 30% are able to go off their meds all together. Folks who have failed with multiple anti-depressants taken alone or in combination have lower success rates, but they don't have hard numbers for that. Same is true if someone tried ECT and it failed. Longer term about 30% of the people have a relapse of depession and require booster treatment. The total data available for this is limited, though, as they've only been tracking it for two years.
The most common side effect is minor irritation at the site where the magnetic coil rests. They recommend taking Advil or Tylenol prior to each treatment to minimize the effect. There have been incidents of seizures, but they are apparently very rare. He told me that the frequency is at or below what one gets with anti-depressants and no one at his organization has ever had one. Regardless, he said it's a good idea for an MD to observe the entire first treatment session just in case. He also recommends that the initial alignment/placement be done by an MD. It needs to be accurate to within about a millimeter for best effect.
If one is already on anti-depressants, he does not recommend stopping their use prior to treatment. They do find, though, that it may be desirable to lower dosages as the treatment proceeds. The treatments have a tendency to increase the potency of the anti-depressants one is taking, so scaling back may be appropriate. Prior to every session one fills out a depression scale and there's a brief consultation to determine if a meds adjustment is appropriate.
Stay tuned for info from my next data collection session from a different doc next week.
That word “appears” in the first sentence of my last post turns out to be pretty important.
Day before yesterday I was awake again for another 24 plus hours. Crashed in the afternoon and slept for a few hours. It wasn't until after 5:30 am that I was able to go back to sleep. Then between the phone and the, no kidding, Blue Angels practicing for their air show later today, only a few more hours of sleep were possible. At least I now know exactly what sound a jet engine makes when the afterburner kicks in. I mean in the second or two after the pilot engages the afterburner, but before it's fully kicked in. It is a pretty cool kind of whoosh. I also know that sonic booms will be part of the show. This has now officially gotten old. I'm exhausted and wired. I don't think it's just coming off the adderall anymore. The new cocktail is playing a role. Its effect continues to increase.
The new cocktail is yet another double edged sword. The good news is I am definitely feeling far less depressed. The bad news is I'm wired and the jaw clenching and nausea are back. Once I get back home, I'll start using the night guard again, along with Phenergan, to try to get control of this. If it weren't for the lift the cocktail is giving me, I'm sure I'd be very depressed. On balance I think I'm ahead of the game. It's so nice to not be depressed.
It appears I may actually be mostly off adderall's effects. It's taken a full week to move from 15 mg a day to zero. During the week, a couple of times I needed a 5 mg “booster” to stay awake. Without it, I'd collapse in the early afternoon for up to eight hours. I still get tired in the afternoon, but it's not overwhelming. Just wanted you to know in case you ever wind up on this drug…
The latest cocktail finally seems to be kicking in and I'm feeling a little better. I'm hopeful this will continue to improve. So far the effects I experienced before from this cocktail haven't reappeared, namely nausea and unconscious jaw clenching. I'm at a lower dose, so that's not a huge surprise. The question right now is if the lower dose will be enough. If not, and the higher dose does produce a recurrence of said side effects, the doc thinks Phenergan or Zofran may remove the side effects.
In parallel with this path, I'm also looking into transcranial magnetic stimulation (TMS). My current understanding is fairly limited, but it appears to work about 50% of the time with minimal downside and no long term side effects – except on the wallet. It's rarely covered by insurance in the US. If it works to the fullest, I'll be off all antidepressants. If it works partially, the dose I need and hence side effects would be reduced.
Today (Monday) or tomorrow I plan to connect with a researcher who does TMS. I have a bunch of questions about the procedure. Will let you know what I find out. The week after that I see a psychiatrist who offers TMS as part of his practice. I plan to ask the same set of questions, perhaps updated, to get his perspective. Then it will be decision time. I'm not positive, but I think the treatments run more than two weeks and need to be done consecutively. If that's the case, I probably couldn't start until next year, given all the travel and holidays coming up.
Well that was unexpected. The doc told me that I might experience a reduction in my energy level when I took the last dose of adderall. I should have realized it’s like when they tell you there will be some “mild” discomfort with what they’re about to do.
Yesterday, I woke up few hours later than usual, still feeling tired. After a couple of hours I felt a lot more tired and laid down. Next thing I knew 12 hours had passed! I do feel rested, very rested as a matter of fact.
Now all I have to do is reset my body clock – and start adjusting to the next drug. That’s life!
Last night I started the transition to the near term anti-depressant drug regimen (see previous post for info on what it is). For folks not familiar with what this is like I thought you might like to know. Hopefully, if you’re taking lupron or casodex, depression won’t be as much of an issue as it has been for me. If it is and you’re medication resistant, as I am, this may give you some insight.
The pristiq I’ve been on has to be tapered off. For the next week I take half the amount and then go off it entirely. At the same time I start taking pristiq’s replacement viibryd. (It will be held at the minimum dose for at least 3 weeks.) At the start of next week I’ll add geodon, and we see how the geodon interacts with the adderall. In all likelihood I’ll need to start tapering off the adderall over about a week. Once I’m off adderall, it will take 2-3 weeks to figure out if the new cocktail is working. Any dosage adjustments will also require 2-3 more weeks to be sure of the effect. If the new cocktail is a bust, it’s back to tapering off and starting a new regimen.
With each tapering off or addition of a psychotropic drug I expect some immediate short term side effects. These are things such as being tired, insomnia, diarrhea, constipation, nervousness, dullness, irritability, nausea, etc. It seems a paradox to me that most of the time the shrinks can’t tell me, for example, whether I’m likely to get diarrhea or constipation. Intestinal problems is about as close as it gets.
So far, with the reduction of pristiq and the addition of viibryd, the biggest side effect is I’m pretty wired. I also had a huge hot flash that lasted almost a half hour this afternoon. Not clear if that was the casodex on its own or some interaction with the other drugs. Regardless, so far so good.
I doubt I’ll provide much more info on the transition, unless something really noteworthy happens.