Wednesday, September 22, 2010

Two questions asked of Dr. GD in light of the weekend...

First of all, feeling much better, thank you all!

Second, some of you folks will remember -- and some of my friends in the UK may get a kick out of this -- that at some point over the last two years my now three year old pressed a series of buttons on my electronic scale so that it now outputs in stone.  Being an Anglophile in the first place, and having a particular sense of humor, this strikes me as hilarious and now even if I could switch it back, I might not.  I've long since lost the manual for that thing and I could probably search the Internet, but why bother?

At any rate, I'm down one stone one, as I believe it's said, from my peak, most of which is from (a) the weekend, and (b) manical followup.  I have been sticking to 1,200 calories a day, drinking a TON of water (the one thing that every physician in the world probably agrees upon) and laying off alcohol -- and watching the pounds continue to ease off.

I'm not going to stay at 1,200 calories a day for much longer, and I'm certainly not going to abstain from wine for much longer either, but I'm going to continue with the water.  I would like to drop maybe five more pounds before I stabilize for the moment.  That will leave me about 10 pounds over my goal weight, but Rome wasn't built in a day and with luck I'll get the stomach flu again at some point in the next two years!  :)

I told my wife I would GLADLY trade one of those chest colds for stomach flu any day of the week.  At least there's a side benefit to the latter!

Anyhow, enough about my slightly contracting waistline and on to the medical topics.

I met with Dr. GD yesterday, who said I looked great, sighed again at the potency and longevity of BB's maintenance regime and then relented and agreed to continue administering it (obviously, as soon as he no longer does so I'm gone -- hope he realizes that).  I did ask him two questions yesterday that might be of passing interest:

Question:  Since I am taking a lot of Magnesium on a daily basis (1000 mg) am I in danger of becoming dependent upon Magnesium supplmenets?  Will my body stop manufacturing Magnesium on its own?

Answer:  I don't know -- it depends on your kidney functionality.  He checked my serum Magnesium (I told him it was 2.0 when last checked two weeks ago -- and I was right) and he then said "you'll probably be fine."

Assessment:  My kidneys have held up like champs through this whole thing, although at the beginning the Myeloma was starting to mess with them.  Creatinine was, I think, as high as 1.6 or 1.8 when I started treatment but since the first round of chemo it has never been above 1.1 and was below 1.0 most of the time until maintenance.  Increasing my water intake in my diet  should help further with this.  Ultimately, I'm not terribly worried -- as long as the body doesn't get used to needing external Magnesium it'll be all right.

Question:  Since I am in seemingly constant low-level intestinal distress from the Magnesium, am I going to become dependent upon Immodium?

Answer:  No.

Assessment:  Phew!

Tuesday, September 21, 2010

Lose weight now, ask me how!

Not Herbalife, folks.

I got a pretty nasty bug on Saturday.  Turned into a fever by Saturday afternoon.  Kept creeping up and eventually got close to 102, which is not good for anybody, much less for somebody in my delicate (i.e. immunosuppressed) state.  Thankfully I had no other symptoms -- no coughing, congestion, sinus issues, etc. -- oh, well, other than crippling diarrhea 10X an hour.  I took a couple of Tylenol to try to keep the fever down and called Arkansas.

They said not to be overly concerned, watch the fever, take TamiFlu twice daily and Levaquin (very powerful oral antibiotic) once daily.  My insurance doesn't like to cover TamiFlu, unfortunately, so that's a pricey pill but I'll fight insurance later -- right now I just wanted to feel better!

The fever abated but the GI issues persist.  At some point during all this, it dawned on me that the magnesium I take (which is ESSENTIAL in preventing those god-awful leg cramps) is the primary ingredient in the rocket fuel laxative that Arkansas prescribed at the beginning of my chemo.  Magnesium Citrate.  It's probably magnesium with a little lemon juice thrown in!  And I'm taking that, DAILY, in high dose (1000 mg) -- without even the benefit of lemon juice to cut it!

Add stomach flu to that and you can imagine what it's been like here.

But I've lost 10 pounds and my face almost looks like it did before I started on dex.

Sign me up for the stomach flu diet!

I'm feeling somewhat better today, drinking lots of water, and hoping I can keep the weight off and maybe even use this to kickstart further weight loss!

Sunday, September 12, 2010

Progress and still doing well, per Arkansas

This last week I had the usual battery of tests.  The MRI was particularly long this time as they now do something called DWIBS -- I looked it up but can't remember what it stands for but it essentially measures the heterogeneity / homogeneity of bone marrow.

Long story short, I remain in complete remission.  Blood work was good.  MRI showed that one of the five original active lesions -- the one in my left shoulder which was the first pain I felt associated with this disease -- has completely resolved.  The other four are shrinking, albeit slowly.  

My bone marrow came back with 7% plasma cells, and about 3% plasma in the core marrow.  This crept up a bit and made me nervous but it was negative for Myeloma and neither BB nor Dr. U, his new assistant guy, were concerned.

BB was impatient for more progress in the bone healing, but he noted in his dictation that bone healing lags complete remission in the blood and that the median time from complete remission to resolution of lesions is 18 months, per their research.  I am a year into CR, so hopefully within six months my bones will be fully healed.

He was sufficiently impatient that he looked into whether or not he could increase my Revlimid dosage while keeping me on protocol.  But protocol is a maximum of 15mg 21 days a month, which is what I am on.  Now I know he would take me off protocol immediately if he needed to do so in order to improve my outcome, and the fact that he did not do so made me feel a little better -- although I will admit to some nervousness between the plasma cell increase (I was below 5% before) and this other fact.

I will return in four months, now, not every three months.  And hopefully we will see more improvement in the bones at that time.  He thought another course of Zometa would not be a good idea, for what it's worth.

Lastly, I did ask folks about Maca root and nobody had heard of it.  Still not sure what to do there...

Enjoy the rest of your weekends!

Sunday, September 5, 2010

Calling all homeopaths...or, Peruvian mojo powder?

A friend of mine was talking about something called Maca powder.  It's evidently a root similar to a radish grown in the Andes.  And apparently it is very potent stuff.  Many benefits but chief among them promotion of libido.  And there are legitimate scientific studies in both lab animals and humans that prove this out.

Of course all the hippie dippie websites that promote herbal remedies likewise promote this particular thing.  However I'm willing to consider this one provided it (a) works and (b) doesn't conflict with any of the cancer therapies I am on.  I'm prepared to accept item (a) above as a given (or in any rate, I would find out quickly) but item (b) remains an issue.  I will ask BB and crew about that next week but in the off chance anybody here knew anything, I thought I'd mention it.

Other questions for BB and his crew next week: what's with this residual bone pain, how does the MRI look, how are long-term revlimid studies looking (BB is testing whether or not continuing with Revlimid in lower dosage after the three years of initial maintenance are over is beneficial), and what is the latest thinking on re-immunization.

Anybody else think of anything I should ask?  :)

Hope you are enjoying your weekends!

Friday, September 3, 2010

Crampwatch 2010...

Haven't had Velcade or Revlimid this week.

Split a delicious bottle of Cabernet last night (a 2006 Vineyard 29, for those playing the home game) with the wife.  Dozed off watching TV and dragged myself to bed upstairs when I woke up.  Didn't think about taking the magnesium...

Big mistake.  Six AM wake up call from a cramp in my left calf.

Looks like I will need to take that stuff for a few weeks, at least, until all the Rev is out of my system.  And even then, I'll probably be afraid to go to sleep!  I'll be like the kids in Nightmare On Elm Street...

Thursday, September 2, 2010

Ongoing GI issues...

I am happy to be off meds for a couple of weeks right now.  Velcade interferes with the bone marrow biopsy process so I halt Velcade a week before my visits to Little Rock.  Revlimid requires aspirin to combat the potential side effect of deep-vein thrombosis, and aspirin thins the blood, and they don't want thin blood before any surgical procedure, bone marrow biopsies included.  And dex, I suppose, is a rounding error in this mess.  So I'm off VRD for two weeks -- the week before the tests and the week of the tests.  A time for my white cells and platelets to recover -- and maybe even a chance for some of my IgG to recover, which is odd considering I was so consumed with suppressing it and eliminating all the bad protein there.

In fact, it's been some time since I've been concerned about Myeloma, per se.  I really don't expect to see it again.  Of course I am waiting for the formerly active lesions in my bones to heal, and next weeks' MRI -- as dull as that process is -- will be interesting to see.  I do not think they will have knitted but some progress should be seen, I hope!  

I must confess I am getting extremely tired of the constant diarrhea.  Most recently I thought this was an impact of the Velcade and that I'd experience some relief when off it, but no such luck.  I looked to see what I'm still taking -- aaah, Magnesium.  The reliever of those awful leg cramps.  Turns out causes diarrhea.

So to recap:

Velcade - causes diarrhea AND constipation
Revlimid - causes diarrhea AND constipation, particularly in combination with Dex
Dexamethasone - causes diarrhea
Magnesium - causes diarrhea big-time
Acyclovir - causes diarrhea
Lipitor - causes diarrhea


Not sure what to do about all this, but I'll ask BB and team next week.  I'm not getting rid of the Magnesium -- those leg cramps are the worst.  So maybe I'll just add Immodium to the mix and hope for the best.  But I'm a little concerned that things may never be the same.  Particularly since, according to studies on long-term Rev-Dex use, the worst may be yet to come:

Update from recent studies: Increased diarrhea in patients taking Revlimid-dex for an extended period of time (>8 months)

  • In studies with more than 700 patients, patients taking Revlimid-dex for more than 8 months experienced significantly more diarrhea than patients taking dex alone (39% vs 28% with dex alone).
  • In the majority of patients, diarrhea started after taking Revlimid-dex for 19 months.

Not sure what to do about all this, but I'll ask BB and team next week.  I'm not getting rid of the Magnesium -- those leg cramps are the worst!  In the grand scheme of things, I suppose, if somebody had told me "we'll get rid of the Myeloma, but you'll have diarrhea the rest of your life" I'd still have signed up to get rid of the Myeloma.  This is a high class problem, albeit a low-class post!  :)