Side effects and other updates, plus the joy of giving back

Howdy folks. Time for an update.

I went in for my weekly Velcade on Tuesday, and then back to the same office to visit with Dr. GD yesterday.

The Velcade infusion went smoothly -- I've gotten it down, knock on wood, with this portacath now. I use something called Emla cream, which is a topical solution squeezed out of a tube that is basically Lidocaine. I smear this goop on pretty thick and then cover it with good ol' fashioned saran wrap, like the kind I used to use in Little Rock while showering. I do this about 90 minutes before I arrive at the doctor's office. Then when they get me in the infusion chair, they remove this and spray a very cold ice spray on it to further numb it. This is something they cannot do in a hospital, I am told, as the icy solution used to be flammable and even though it no longer is, most hospitals still have protocol against using it.

I've had the ice spray without the Emla cream before and I can tell you, it's bloody cold and it stings! The Emla cream makes this unnoticeable. So I know that it's working.

By the time I've been flash-frozen, inserting the needle consists of a tiny amount of pressure for an instant, and no pain or discomfort beyond that. Similarly, removal of the IV is very simple as well.

So at this point in time, I am glad I got the portacath. There is the ugly scar and a bump under the chest but it's not the end of the world and I don't think I need to have it relocated to the other side or removed. I've had the painful one accessed twice and the less painful one accessed three times, and they have all been without event. Next Tuesday is the painful one again, and if it can be done as easy as last time, I will pronounce things a-ok.

I was anxious to see labs with some protein information in them to see if the immunofixation test is negative, but alas all they had for me was CBC (complete blood count) from the previous week. Of note, WBC was holding at 5 and change, HGB was at 14.3, down a tick from 14.5 but still good, and platelets were 127. Low, but not as low as I might have feared. That bruise on my left arm is still there -- I think it is simply from one part of physical therapy, where I prop my body up on alternative forearms and use that to support my entire weight by lifting my hips up off the ground. This applies pressure to the forearm and is the only thing I can think of that would have caused the bruising.

At any rate, I went to GD yesterday armed (har har) with this and other questions. And I did get the results of this weeks CBD, which showed a dip in WBC, HGB and platelets to 4.9, 13.3 and 123 respectively. Boooo....especially HGB as I was enjoying not being anemic. Anyhow, highlights of the conversation with GD:

1., The reading from the immunofixation test is of no consequence, evidently. He was very dismissive of it, and said it was absolutely nothing to think about. We will watch it, he says, and see if it increases but as of now, it's nothing. Now...this is not something I wanted to hear. It is another half-answer and it doesn't satisfy me. I have resolved that I will need to speak with BB about it in January once we have a bit more data. But what I want to know are very specific answers to very specific questions, with supporting information. Maybe I just need to "train Dr. GD" (to use the words of our friend and fellow traveler LP) -- I am not the typical patient satisfied with a glib response. I want to know things like:

a. Does this mean I never achieved true complete remission, or is this noise within the test acceptable in the complete remission category? And if the latter is true, is there a more stringent complete remission that I should hope to achieve?

b. More to the point, does the presence of a faint monoclonal band even indicate myeloma, or in the context of the oligoclonal bands observed elsewhere in the spectrum is it a sign of either treatment or normal protein functionality?

c. How long can I expect the numbers to bounce around before we lock down into a permanent negative state, assuming we want and expect to see that as a sign of favorable response to treatment?

d. At what point should I become concerned -- NOT when the protein comes up, but if, for example, we find faint monoclonal bands each month for six months, etc.

e. What percent of the general population would have this feature in their blood -- clearly it would exist without so much as a diagnosis of MGUS since there is such a microscopic amount of m-protein that it wouldn't show up under SPEP, let alone less stringest tests like the original total protein analysis that my primary care Dr. PZ caught about a year ago to this day. And is there a chance (and if so, what chance) that I've always had this, and if so what does that mean vis-a-vis my Myeloma? Are they unrelated or is it back to a dormant state, etc.

2. I was excited to have briefly dipped below the 13 stone threshold, down to 12 stone 13 and a half! On my way! And yet I've noticed that post-my Dex on Tuesday, I've gained about five pounds back (three as of the doctor's visit). Most of this, if not all, is water weight as I've been drinking lots of water and haven't peed much. Mild constpiation may also be an issue -- I've got lunch today with the CEO of PinnacleCare followed by golf and I don't particularly want to "prime the pump" for an unexpected bathroom visit so I'll probably wait until this evening to dose up but I'm not going to let it go past tonight.

3. The weight gain from the Dex is also influencing, to a degree, my blood pressure, which was a lovely 116/71 (thank you, Revlimid!) on Tuesday but 133/83 on Wednesday. I asked the doctor if he concurred that this, the weight gain, and the drop in hemoglobin from 14.3 to 13.5 were as a result of water retention from the dex and he believed it was. Hurray for Nick the amateur hematologist! Now if only I could pee....

4. Dex causes insomnia even after it is done being taken. I took Ambien on Dex day and again last night. Both times I was able to manage only about six hours, which means I wake up groggy. Still, this is better than not sleeping. I will take one more Ambien tonight. I don't like taking three a week of them but they are supposed to be non-addictive. We shall see. (ed. note: Well, I just saw, courtesy of a Google Search for "is Ambien addictive?" Turns out it is. Maybe two nights a week is all I shall use it for...I'm yawning as I type at 5:45AM, so hopefully tonight I'll be out like a light).

5. Dex causes esophageal problems (e.g. "Dex voice") for a couple of days at least. I took Pantoprazole on the morning of the Dex and again yesterday and have had no heartburn. I am not going to take it today, and see what happens. I want to be on as few of these supportive care drugs as possible.

6. I finished my first 21-day cycle of Revlimid without any side effects to speak of, really. I sometimes notice a tiny bit of tingling in my feet but it's really nothing to speak of...barely noticeable and absent most of the time. It's probably got nothing to do with anything. But I do take MetaNx once a day and I may double up just to be safe. Any neuropathy I get at this point is probably from the Velcade and would be reversible, and I don't really have anything to be worried about at this point. Certainly nothing anywhere near the feeling I would have of my foot being asleep, certainly. The Revlimid did, though, as expected, bring down blood counts. I was surprised the HGB held up as well as it has. Hopefully the 7 days off will allow these counts to go back up before they get hit again for the next cycle.

7. Like its cousin Thalidomide, Revlimid does completely eliminate the desire to "multiply" (in the sense of Genesis Chapter 1). Now that my PSA tests came back very, very low (meaning there is no risk of prostate cancer) I am free to receive the BB-suggested shots of testosterone. Who knows if this will have any effect but it can't hurt my physical therapy as well as my mojo, as I was referred to a urologist by Dr. GD for the shots.

8. GD did not think the bruising on my arm was from platelets and that the platelets, while barely in the normal range, are acceptable. I had called Arkansas to suggest going from 2 aspirin a day down to 1, and they agreed. GD concurred with this. So for now, I reduce the Aspirin intake a bit and watch. I do think the bruising on my arm is from the platelets -- it's not like I banged my arm anyplace. But we'll see.

9. BB had ordered every week complete blood panels, CRP, liver numbers, protein SPEP and immunofixation, etc. GD flat out refused, saying it was too much. He would do it every other week. This seemed acceptable to me, although I must admit I was a bit irritated that he wouldn't simply follow BB's orders.

This is a good segue to another discussion I had with LP, she of the "training the doctor" quote above. LP's husband D was diagnosed and previously treated for some time before going to Arkansas to go through Total Therapy 6 (the code for double-transplant candidates who had previous been treated elsewhere). D is doing great, and they have returned home to enter maintenance. The doctor they selected, like my own SH, is I'm sure a good hematologist but he doesn't believe in maintenance and he was dismissive of BB's protocol. My suggestion to LP, which is where I came out as well, is to find another doctor. You have chosen a therapy not at random: it's the one that you believe will give you the best chance of beating the disease. I am obviously big on learning as much as I can, and I like to control what I can, but at some point you have to trust the doctor and a sense of trust is critical -- as faithful readers have seen in my own blog -- to making it through those inevitable times when the numbers aren't what you want to see. You have to have faith in the protocol and in the doctor in order to keep your positive attitude. So if the maintenance physician is muttering under his breath or shaking his head reading the followup instructions from BB (and even SF, a fan of BB's, said the instructions were "a bit on the imperious side") it's not going to be conducive to the strongest psychological approach.

GD's irritation with BB's weekly run of tests -- and his incomplete answers about my immunofixation situation -- was enough to rub me the wrong way, actually, but as he is generally with the program I'll stick with him.

So anyhow, that was my free advice for LP. I was also fortunate enough to meet with a newly diagnosed patient, who wants to keep himself private so we'll call him JD, after his profession. He's my age and in Los Angeles. I spoke with him for perhaps half an hour on Tuesday night, and last night we met over dinner for two hours.

He said he'd found my blog and had been reading it and found it helpful -- take THAT, Brother Ted! :) Anyhow, meeting this gentleman in essentially my own situation (he is in stage 1, has not begun treatment yet, is evaluating his options, etc.) about one year removed is a remarkable thing and it gives me the rarified feeling of almost looking back through time and trying to help myself. I've taken a keen interest in JD's well-being and I plan on being a resource to him for anything he needs at this time. Diagnosis is frightening, and his questions were very well informed -- in part from my blog, which is in itself quite rewarding as my goal all along has been to help people that are going through diagnosis and treatment by giving the non-white-washed version of everything.

JD has a lower M-protein than I did on diagnosis (he is 3.3 versus my 4.1) and importantly his bone marrow is only 20-25% plasma cells where mine was 70% or so. My initial advice was for him to do research, live his life, take his planned vacation, spend time with his young son, figure out what he wants to do...and then go for it. He's considering treatment locally and I suggested that he meet with SF out of City of Hope, but I am not shy about suggesting BB as the place to go.

Bart's data shows, as of earlier this year in a presentation to ASCO, a 74% cure rate for low-risk patients in Total Therapy 3. And that includes patients that have not achieved complete remission (recall that achieving complete remission increases the likelihood of sustained event-free survival by about 25%). Combining these statistics seems to suggest -- and I'm not being totally scientific here as they come from two different data sets but they are nonetheless related -- but it seems to suggest that the cure rate for people achieving complete remission EXCEEDS 90%.

This in a world where nobody else will even suggest that the disease is curable.

For a young, healthy man like JD, Arkansas is the place to go. It's a sixth month inconvenience. It is an unpleasant experience. But it will most likely save his life.

And in the meantime, I am here for anything he needs. I was so thankful for the opportunity to speak with him and I look forward to being a resource to him and others going forward.

And with that, I bid you kind folks adieu for another few days.