Myeloma Lessons: Some Bumps In The Road
Let me get this out of the way right at the outset: I am a fortunate person.
It is true that I have an incurable cancer. At the time of my initial diagnosis, I was suffering from pretty significant bone pain, especially in my ribs. And during the six months of my induction treatment, I dealt with some unpleasant side effects, especially the craziness and sleeplessness caused by dexamethasone (Decadron).
I went through a stem cell transplant, which was taxing, brought on severe fatigue, and caused painful gastrointestinal side effects. Recovery from the transplant was slow and it was many months before I felt “normal” again.
Maintenance on Revlimid (lenalidomide) has provided some challenges as well. Diarrhea was difficult until I happened onto the “colestipol cure,” and tiredness is always there.
There is also my ongoing war against osteonecrosis of the jaw (ONJ), which I discussed in a previous column. Although several of my friends are convinced that I really don’t have ONJ, my oral surgeon is pretty sure that I do. So I treat it with antibiotics and anti-bacterial mouth rinse.
On the other side of the ledger, though, is the important fact that I have been able to achieve stringent complete remission (assuming my remaining M-spike really is secondary MGUS, as my oncologist and I believe). And, despite some lingering effects from the Revlimid – primarily less-than-normal blood counts, which have a limiting effect on my already limited athletic abilities – I am really doing pretty well.
I am able to do just about whatever I want to do with only minor limitations. I still cannot lift heavy objects or weights, but I do go beyond what my ever cautious doctor thinks I should. I ride my bike long distances, slower than in the past, but at least I can get out there. I can play with my grandsons, work around the house and garden, and generally enjoy my still new semi-retirement.
But that does not mean that the road is always smooth.
Two months ago, my urine immunofixation tests showed measurable monoclonal proteins for the first time since my diagnosis. The proteins, however, are kappa and, at initial diagnosis, my M-spike was due to a lambda clone. So we think that this is just further evidence of secondary MGUS. Still, the doctor has ordered a 24-hour urine test to take a closer look at the situation.
I hate to complain, but the 24-hour urine test is a pain. As many of you know, not only do you have to collect an entire day’s worth of urine in a container, it also must be refrigerated. Needless to say, this is incredibly inconvenient, especially if you are not at home. There are worse things in the world, to be sure, but I am not looking forward to it.
Does this seemingly sudden decision to order a 24-hour urine test betray some doubt on the part of my doctor regarding the secondary MGUS diagnosis? Did I hear him correctly when he seemed to suggest that the clone can change? More to think about.
More concerning, though, is whether I may have a liver issue. A little over a year ago I noticed that my AST (aspartate aminotransferase) and ALT (alanine aminotransferase) liver enzyme levels were elevated above the normal range. When I raised this with my oncologist, he recommended that I consult with a liver expert who also worked at the teaching hospital where I was being treated for my myeloma.
The liver doctor reviewed my results and ordered some additional tests, including an ultrasound of the liver. None of these tests revealed any cause for worry. The liver function tests were all normal. So his conclusion at the time was that this was one of those things that really could not be explained, but that I should not be concerned.
A year went by and the liver enzyme levels continued to be elevated – in at least one instance very much so. When I went to the liver doctor for a follow-up appointment in mid-July, he was more concerned since there had been no reduction in the AST and ALT levels. At this point, he said that it would be prudent to do a liver biopsy. I agreed.
I am now scheduled for what is called a “transjugular liver biopsy.” As the name suggests, entry is gained through the jugular vein in the neck. A catheter is threaded down through the jugular vein and eventually into the hepatic vein in the liver. It is not entirely clear to me how this tube gets from the jugular vein to the hepatic vein, although the doctor seemed to suggest that it goes through the heart. That sounds a bit scary.
As the doctor explained to me, once the catheter reaches the liver, they then perform a series of maneuvers.
First, a balloon in inflated and deflated. This allows the doctor to check the pressure in the liver.
Next, dye is injected so that they can view the blood flow through the liver.
Finally, several tissue samples are extracted for pathological testing.
Local anesthetic and conscious sedation is used during the procedure. The entire process, including recovery, takes between five and seven hours.
Not exactly a walk in the park.
Although it seems like it must be easier to access the liver more directly – say from the side – the doctor explained that, while the transjugular access is more invasive, it is safer. There is less chance of bleeding, and any bleeding will be back into the venous system. And there is no need to puncture the liver capsule.
Sounds comforting, but I would just as soon skip it if I could.
My point is that, despite all of the good results, there are still issues to deal with. As Roseanne Roseannadanna said: “It’s always something – if it’s not one thing, it’s another …”
I have made a conscious choice since my diagnosis to concentrate on the positive. This from someone who, when tasked in a college creative writing class to pen an essay on my personal philosophy, wrote an epistle entitled “A Cynic’s Eye View.”
Whenever I find myself getting overly concerned, I begin singing in my head (with apologies to Lennon and McCartney): “It’s getting better all the time, better, better, better …”
Andrew Gordon is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of his previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Andrew, Sorry to hear about the new developments. Best of luck to you. With respect to the urine collection and refrigeration, why not try a cooler and put plenty of ice packs in it to line the bottom and the walls? The container will keep the collected urine very cold until you are able to deliver it to the lab. This works for me and saves me the inconvenience of having to use my refrigerator. masha
Andrew:
Good news, me Lad.... You are certainly hanging tough!
I used the bath tub, 20 lbs of ice, and my J-B Fire engine red Pee container, for my 24 hr collection. I did have to use a cooler for the 2:30 long drive to the center....to keep things cool. It was worth it.
On the liver biopsy-- You know, they used to just "stab" you / anyone to access the liver--but they discovered, via lots of complications and "misses" with the thru tummy blind "stab" Biopsy method.
The newer method is more accurate.
Hope your back is okay to lay on for an hour or more....as that will be the worst of it all.
You continue to amaze. You completely switch myeloma's on us post STC....and yet, you are still in remission!
Good luck.
Not sure how much you pee, but you might get 2 containers, just in case. And do it on the weekend, and on a day when you'll be at home the bulk of the time. The instructions say to pee in a separate container and then pour it into the container. I blow that off and pee direct, and keep it in the refrigerator, warning my wife not to open and drink it. But depending on your size and how you hydrate, a single container may not hold 24-hours worth. You say it will be a pain, but to me, you're going to pee anyway---just do it in the jug.
May things always remain steady for you Mr. Gordon and if things are to change, may they only get better. Better and better.
Thanks all for the urine collection tips. I will figure it out.
Rneb--Classic post as always. My liver doctor very much favored the transjugular approach and my reading confirmed it. I actually had the procedure yesterday. It went according to plan and no real back pain--it was very quick. I had some neck soreness where they went in but other than that not too bad. Now we wait for the results. Thanks for your encouraging comments.
Upasana--I appreciate the kind wishes. Best to you as well.
Andrew - been reading your columns and really appreciate your constructive thoughts and the sharing of your journey.
I joined the club in April 2014 and was put on RVD for the consolidation therapy before the stem cell transplant in September 2014. My liver enzymes went nuts!! I too had a liver biopsy, although they retrieved their sample with the same technique as a bone marrow biopsy. My oncologist and liver doctor both feel certain that the Revlimid was starting to shut down the small internal ducts within the liver. I appear to be one of the 1% that has a strong liver reaction to the Revlimid and as such do not use it for maintenance - starting with elotuzumab and lirilumab later this month.
So - please ask your doctors whether or not the liver issues could be cause by the Revlimid. After 6 months off the drug, my liver enzymes were back to normal.
Take care,
Erin
Thank you Erin. I will do that.
Andrew,
I sure hope that all comes out well for you on the liver biopsy. Thank you for sharing the details of what's happening for you. That can't be easy. There's a lot for us mm patients to keep track of, isn't there? Thank you for being so open. Wishing you the best.
The Devil is always in the details...
Unlike a percutaneous biopsy, the transjugular approach accesses the liver parenchyma through the superior vena cava and hepatic vein and obtains hepatic tissue without traversing the liver capsule. Possible bleeding from the biopsy site is directed into the access vein, minimizing the risk of intraperitoneal hemorrhage.
https://youtu.be/s_dUQAZQ2vE
You got it Rneb. Seems counter intuitive that going through the jugular, the heart and into the hepatic vein would be safer but it is. And amazingly, the puncture site on my neck was completely closed when I took the bandage off the next morning.
Not sure what the Doobies have to do with it but it was a good version of the song.
..Something for you to flare your nostrils at, enjoy your health, and hop on that Wright Bros special (bike),...and "take it to the streets"!
Hi Andrew. Well I'm really interested to find out if Revlimid is the culprit in your case. Keep us posted!
Best wishes, RT
Love the Roseanne Rosannadanna quote.
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