Upon reviewing the recording I made of the second consult with BB, he really wants to do induction, transplants AND consolidation therapy in Little Rock. And the more I think about it, the more justification there is for it. He knows what to look for, and all of these therapies are very interrelated.
I set up a call with CS to go over the protocol in minute detail, for two reasons. First, I want no surprises. I learned about the needle aspiration AFTER arrival at the clinic last week, and I didn't like that. A routine blood draw in Arkansas turns out to be a medieval blood-letting, and that was surprising and disconcerting. The injections of isotope and contrast for the PET and MRI weren't anticipated, and that was also disconcerting. So now, I want to know everything that is going to happen, so I anticipate everything and there isn't anything to jar me out of my sense of ownership of this process. Managing this process is how I keep my sanity.
Secondly, I had a very bad experience, as noted below, with the needle aspiration. I'm going to be very insistent that I am made comfortable during procedures that hurt. This will likely include more painkillers and more sedatives than they are used to using, but frankly after they did a procedure on me without any sedation, they lost the ability to EVER say "oh, you don't need X Y or Z, we're only doing such and such."
So I'll post most of the questions and answers here. They'll likely be more detailed than is useful for many of you, but in this case it is also a document of record for my own convenience.
What tests, if any, are performed before a port is installed, and if any involved blood draws or anything else, what is the rationale for not doing that once the port has been installed?
What kind of port is installed, and how is it installed? Where will it be located? What is the procedure for installation? Is this done under general anesthetic, as it is at City of Hope? If not, is there an option for that?
Once installed, is this port used for all blood draws, infusions, chemo, injection of isotope for PET scan, etc? What needle pricks, other than bone marrow for the gene array, require anything more than this port?
There will be an initial visit at the clinic, where they would normally do bloodwork (of the 30-tube variety) to establish baseline numbers. However, since my visit was pretty recent, they can probably put this off. They will install a catheter underneath my clavicle. This is done with local anesthetic only. They would resist doing this at the outpatient clinic, and would either do it at the interventional radiology clinic or the central line clinic. They don't normally give conscious sedation for this. Once installed, this port remains in place for major phases of the program (most likely through the end of induction). All blood draws, tests, infusions, chemo, isotope injections, etc. are done through this port.
I will NOT be willingly going back to the interventional radiology clinic as that's where the jerk did the needle aspiration. I don't like the fact that they don't give conscious sedation for this -- they are striving to keep all of this outpatient without the need to deal with stuff like anesthesiologists at the main hospital, etc. City of Hope does it under general anesthesia, but then they do all of this stuff in-patient anyway. Since this sounds like something that is tolerated very well and it doesn't involve boring into my bones, perhaps this is a good test of the ativan and fentanyl lollipops. In any case, I'm relieved that they'll do this one installation and then I don't need to have a million other things stuck in my arms every other day.
What is the precise protocol? When are bone marrows done and how many are done? What other tests are typically done? Can they be done under conscious sedation, rather than just the lollipops? What side effects from the induction agents am I likely to experience (i.e. nausea, diarrhea, mouth sores, neuropathy, etc.), how likely are they to occur, when do they occur and when do they end? What agents are given to minimize these effects, how effective are they, when are they given, and in what manner (i.e. oral meds, IV through the port, something else)? At what point, if ever, are chemo agents reduced in dose? At what point will I be neutropenic, and for how long?
One the port is installed, a small test dose of Velcade is given (1mg/m2). 48 hours later, bone marrow is drawn (typically the patient is given the lollipops for this) and another gene array is done. In some cases, this can result in a re-allocation of patients from 'low risk" to "high risk" categories, and it also provides a glimpse into how the disease is going to respond to the Velcade. On day 3, a test dose of Melphalan is administered, and another gene array is done 48 hours later. THEN, there is an 11 day induction regimen, consisting of Velcade on days 1, 5, 8 and 11, continuous drips of the PACE chemo agents from days 5-8, and thalidomide and dexamethasone (not daily but something like four days on and two days off). After the last chemo dose, they start injecting me with a "growth factor" agent to boost my blood counts. There is a clinician who looks at blood and performs a bunch of equations on the counts to determine how much of this to give me and when and how many days will be required. This is done via injection in the subcutaneous fat of the belly and is one of the few needles that can't be done through the port.
As far as side effects, nausea is not uncommon but is generally controllable. Mouth sores are very, very rare. Very little neuropathy is seen until bridging therapy (between the two transplants). They stick to thalidomide during the bridging therapy because Revlimid causes platelets to fall, and if bridging goes on for more than a few weeks, it can cause neuropathy. They have been putting patients on B6, B12 and folate supplements and that seems to have reduced the instances of neuropathy. Diarrhea is unavoidable. There will also be neutropenia, and the precise onset and duration are patient specific but most occur 3-5 days into the cycle of chemo and it lasts for about a week, depending on how rapidly my body responds to the growth factor.
Some patients experience discomfort in the lower back from the growth injections [ed. note "discomfort" is doctor-speak for agonizing pain] and they prescribe standard painkillers such as Oxycontin (somebody kill me if I turn into Rush Limbaugh). If the platelet count is above 40, they will also prescribe Lovinox shots (again in the sub-cutaneous fat in the belly) to reduce potential for deep vein thrombosis (blood clotting). [ed note: if the platelet count is high, why not just put me on the damn Revlimid????]
During induction, there is typically a once-a-day visit to the infusion center. They will do a PET scan 7 days after the chemo treatment is over to determine how the disease is responding to the therapy, and as BB told me before this is a useful indicator of long-term prognosis.
All in all, sounds pretty good. I'm not looking forward to the shots in the stomach but they don't sound as bad as I feared (I was thinking rabies vaccine based on what I'd heard from a couple of other folks). I'll see how the lollipops work for the catheter placement and if they work fine, then maybe I'll try them out on the bone marrows as the Versed at this joint isn't exactly foolproof. Otherwise I will insist on Versed or something stronger. As for the side effects, I'm prepared for all of them. Neuropathy is the one that worries me the most so I'll just keep an eye on that. It does sound like the biggest risk there is during bridging, because there's a lot of thalidomide administered and if that runs three months between transplants, I've got a lot to deal with. However, BB pushes as aggressively as possible and I suspect I will be lucky to have one month between transplants, much less three. If they can control the nausea, I can deal with the diarrhea. Glad to hear there aren't any mouth sores. I'm resolved to lose the hair -- that will grow back. Look out cancer -- whole lotta poison coming your way!!!
Is the port removed, or kept in place? If not kept in place, how is it removed? If I am on the lite arm and fail to achieve complete remission (CR) after the first cycle of induction, can I receive another cycle, either by shifting protocols or going off protocol? If I am on the standard arm but achieve CR after only one cycle of induction, can I be moved to the lite arm? If I do two cycles of induction, and each cycle is three weeks, how long is there between each cycle? Would I be well enough to see visitors, see children, travel on a plane at this point, etc? At what point do injections for stem cell mobilization (this is the term for coaxing the stem cells out of the marrow and into the bloodstream) begin? How are these injections given (through the port versus other means)? What other injections, procedures, tests, etc. are run and what do they entail? What invasive procedures, if any, are performed at this point?
The port is kept in place but the catheter is switched out to a larger gauge [ed. note sounds horrible]. BB will get the patient the most effective therapy regardless of which protocol. CR is the goal (although only achieved about 50% of the time). There is very little time between induction cycles because BB is very aggressive. Some protocols would be three weeks on, one week off. BB will be three weeks on, then on again as soon as your blood counts can handle it. So it might be ten days between cycles or it might be three. Traveling is not an option for that reason; it might be possible to see the kids if they aren't sick. Injections form stem cell mobilization will begin as soon as the blood counts return, and this is of course monitored daily. There will be bone marrows done after each cycle of induction. These cannot be performed while I am on growth factors as the results will be skewed.
So many bone marrow biopsies, so few hips. I'm getting very tired of them and I've only had two. Let's hope we find a way to keep me unaware of what's going on. I'm not going to be shy about it -- I have to be my own advocate and I don't care if they think I'm a wimp because I want to be heavily sedated before they shove a stainless steel ball point pen through my hip. The nurse who is helping us arrange a place to stay in Little Rock called, by the way, and said the installation of the port is a "horrible thing" so screw CS, I'm gonna be out of it before that happens. They can do it in the outpatient surgery center, frankly. This nurse also said she hasn't seen any mouth sores in a long time, which is great news.
As for the rest of it, it sounds pretty good. I'm all for getting through this quickly and keeping the cancer on its heels, unable to regroup. Maybe I'm insane but if they can control the nausea and all I have to worry about is bad diarrhea and exhaustion, I'm gonna be fine.
So long as they sedate me before any of these heinous procedures. When the port is removed (after each transplant / recovery) they evidently just have you hold your breath and they yank on it. This, to me, sounds insane. So insane that I thought he was joking. He said people say it feels weird. I BET it feels weird. The last time somebody asked me to do that it was when I had nose surgery and a guy ripped five cubic feet of packing material through one of my nostrils. That was hell. The last thing these Arkansas folks said would feel "weird" was the digging around in my hip for the needle aspiration. That sure felt weird all right! Sedation, sedation, sedation!!
TRANSPLANTS AND THE REST
This basically all got distilled down to a few observations:
* They use the wider gauge catheter for the stem cell collection and infusion, so that means I don't need to have needles in each arm for six hours a day. It usually take two days, and they will collect an average of 20-25 million stem cells per m2. This is enough for seven transplants or so.
* Side effects are more pronounced than the initial regimen but are generally the same. Mouth sores are not that common, nausea is often controllable, diarrhea is not, fatigue is not.
* Generally one visit to the infusion center each day, but the days are long. Bloodwork is done in the morning, then we wait several hours while they check the results and determine how to adjust the infusion regimen that day.
* The recovery period between transplants is typically four weeks to three months, and again it is usually as short as possible and guided by BB's sense of where the disease currently is. Given my age, I will probably respond quickly and BB will want to hammer home the second transplant ASAP. I'm betting it will be four weeks...which will allow me time to come back to Los Angeles.
* Between transplants, I will be on bridging therapy, consisting of thalidomide and dexamethasone. This will be where the neuropathy has a chance to strike, particularly if it's a long bridge, as the thalidomide will be given daily. I'll have to keep an eye on it, and also consider that B6, B12, folate cocktail.
* When it's time for the second transplant, I'll go out, have another bone marrow done, and have the port put back in. I told them that I want to be knocked out for this. Frankly, why not put me under, do the bone marrow and install the line at the same time? He didn't seem to want to sign up for that...so I shall have to see if I can be more persuasive in the future.
* After the second transplant, again it's typically 3 weeks to 3 months before the second transplant -- another opportunity to come back. And then I'll need to return for consolidation therapy, which is precisely like induction therapy except that the doses are reduced by 25%. I will have the same side effects but they won't be quite as severe. Depending on whether or not I need one or two cycles, I'll be in Arkansas three weeks to seven weeks.
And then I will come home, cancer free, to begin maintenance therapy. That therapy last 3 years, but can be done in Los Angeles. I will make quarterly visits to Arkansas during this time. And each time, another bone marrow is done. My aching hip...
The Bottom Line:
I'm ready for it all. Provided they cooperate and properly anesthetize me before doing any painful procedures (the bone marrow draws, installation of the IV catheters, etc.) and provided they give me enough medicine to keep the nausea and mouth sores away...I'm ready.
Message to my myeloma cells: I'm gonna kill every last one of you sonsobitches and I'll smile while I'm doing it.
Thursday, February 5, 2009
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