Yesterday evening Stefano and I went to see our family doctor, an absolutely brilliant man, knowledgeable in a variety of fields…not just conventional medicine. My admiration for him would fill more than one post, no question about that. But I digress…
He went through my recent test results carefully, comparing them to my November 2008 results. He told us that yes, the monoclonal component has indeed gone up, BUT, he added, if those increased markers go back down again in the fall (as we all think they will), then we can ascribe this to normal lab variation, nothing more. In other words, this increase isn’t high enough to justify any sleepless nights. (Not that I have been having any sleepless nights, mind you. Indeed, I always sleep like a hibernating bear!)
Conclusion: I am still stable. 😀
This morning my endocrinologist prescribed several truckloads of vitamin D for me…the type that will not increase my serum calcium (that would not be a good thing!). She also confirmed that my kidney functions are fine and dandy. Good to know.
I would like to thank each and every one of you…those who left me public comments and those who dropped me private notes of encouragement. I very much appreciated all your kind and supportive words…and the heaps of suggestions! Paul, your usual stroke of genius. I hadn’t thought of that possibility. Furthermore, after posting my test results, I received a note from one of my blog readers informing me that he had taken the exact same feverfew supplement, for the same amount of time (six months, that is), but took three times the dose that I took. Well, not only did his markers remain stable, but his liver and kidney results were the best he has ever had. Excellent news indeed. So I am definitely not giving up on feverfew. I will give it another whirl…perhaps next fall, after my next set of tests…
In the meantime, this is going to be a great summer! Now please excuse me, Sherlock has sent me a couple of new studies…;-)
A blog reader/myeloma list member (thanks!) sent me some links to cute cat videos. The “cat in a bag” one, hehe, reminded me of how obsessed my own cats, especially Puzzola and Peekaboo, are with boxes and bags…Too funny. Anyway, enjoy!
http://tinyurl.com/n2ubxq (cat and a big box)
http://tinyurl.com/mh7y3a (same cat stuck in a small box)
http://tinyurl.com/maxvn6 (same cat with a bag over her silly head)
http://tinyurl.com/nwtllu (different cat, “massaging” a dog)
Today is Stefano’s birthday. After the scare I gave him a few days ago, I thought I’d better come up with something good (!), and this lovely sonnet (Italian and English translations provided) by Pablo Neruda fits the bill perfectly:
Non t’amo come se fossi rosa di sale, topazio
o freccia di garofani che propagano il fuoco:
t’amo come si amano certe cose oscure,
segretamente, tra l’ombra e l’anima.
T’amo come la pianta che non fiorisce e reca
dentro di sé, nascosta, la luce di quei fiori;
grazie al tuo amore vive oscuro nel mio corpo
il concentrato aroma che ascese dalla terra.
T’amo senza sapere come, né quando, né da dove,
t’amo direttamente senza problemi né orgoglio:
così ti amo perché non so amare altrimenti
che così, in questo modo in cui non sono e non sei,
così vicino che la tua mano sul mio petto è mia,
così vicino che si chiudono i tuoi occhi col mio sonno.
I don’t love you as if you were the salt-rose, topaz
or arrow of carnations that propagate fire:
I love you as certain dark things are loved,
secretly, between the shadow and the soul.
I love you as the plant that doesn’t bloom and carries
hidden within itself the light of those flowers,
and thanks to your love, darkly in my body
lives the dense fragrance that rises from the earth.
I love you without knowing how, or when, or from where,
I love you simply, without problems or pride:
I love you in this way because I don’t know any other way of loving
but this, in which there is no I or you,
so intimate that your hand upon my chest is my hand,
so intimate that when I fall asleep it is your eyes that close.
I got my test results yesterday. Not great. As you read through this post, please keep in mind that my previous tests (excellent ones, by the way) were taken six months ago, in November 2008. Well, I have learned one very good lesson: never again will I wait that long between tests…okay, here goes…
My total protein went from 8,6 to 9,5. It’s been above 9 before, but this is the highest it’s ever been.
My IgG jumped from 32,80 to 39,90. Ouch.
My M-spike went from 2,33 to 2,68. Double ouch.
B2M went from 1,7 to 1,9. Not a big concern, since it’s been that high before.
I also have a rather scary vitamin D deficiency. My endocrinologist had told me not to take any vitamin D before this set of tests, so I didn’t. Whoah, though. This particular value turned out super low. I need to speak with her and start on a vitamin D supplement ASAP.
As soon as I received my results, I sent them to Sherlock who looked them over and then phoned me. These are a few of her very wise (come al solito!) thoughts: perhaps an ingredient in the feverfew extract that I took for six months might have inhibited the anticancer activity of the curcumin. Aha. That is very possible. And her theory might be confirmed by the fact that my (already high) cholesterol went up a staggering 14 mg/dL, which doesn’t make much sense when you think about it.
Another possibility, my good friend told me, is that I may have some sort of latent infection. That would explain my high IgG and also my still high ESR (note: my ESR is less than it was in July 2008, which is good). At any rate, Stefano and I are going to talk this over with my family doctor on Monday to see what can and should be done.
Let me add that the news was not all bad. For instance, I am definitely not anaemic. My haemoglobin, red and white blood cell count etc. are all fine. My ferritin is up to 13, back in the normal range, yay, and my serum iron continues to be fine. And my other markers have remained more or less the same, for instance my creatinine is still at 0,7, perfectly normal.
Let’s see. Now we get to the “big no-no.”
Of course we always want our markers to be stable or even better than stable, so any increase is a disappointment if not outright frightening. But I thought I had taken the news quite well…there were no signs of what would happen later on…when Stefano got home from work, that is.
I began, “I have something to tell you…,” and then, to my utter surprise and horror, I felt tears welling up in my eyes. Oh no. Not now. I tried to hold them back and managed to continue, “I got my results…and…they…are…really…bbbad…!!!” Then, phoosh!, the deluge…
Oh no…my poor husband! Through my tears, I could see the alarmed look on his face, so I managed somehow to reassure him…that he shouldn’t worry, that I was still stable but some of my markers had increased a bit. Phew, relief! This leads me to make the following obvious point:
If you ever have some disappointing or worrisome news to break to your caregiver, please try NOT to cry! Not a good idea…mark my words!
Well, I obviously have some pondering to do in the next few weeks. In the meantime, I have decided to stick exclusively with what works (no more experimenting!), that is, my daily dose of curcumin/bioperine, quercetin/bromelain and purified fish oil. E basta!
Another decision: I won’t fret about these results but will enjoy my summer. No more tests until the fall. And, bloody hell, no more tears!…unless, of course, prompted by a fabulous BBC drama series!
Hi everyone! I just received a note from a blog reader asking me if I knew of a reliable source for curcumin in Germany. I was of very little help…so I was wondering if those of you who live in Germany AND take curcumin wouldn’t mind telling me where you get your curcumin. If you don’t wish to post a public comment, please please please drop me a private note.
Thank you sooo very much!
Yesterday a fellow blogger and friend wrote me a private note about, er, cycling…which cheered my heart…not that my heart needs any cheering right now. I am as happy as a cat with a ball of yarn. In the past few days (=a long holiday weekend here in Italy), you see, I have been done little else but sit back and enjoy a succession of absolutely brilliant BBC drama series with my parents…in fact, we just finished wiping our eyes after watching the final episode of “North and South,” ah what a wonderful production that is!
But back to my blogging friend. He just published a post about this recent bit of cycling…with Revlimid and curcumin and a few other supplements. If you are curious to learn more, please go to: http://tinyurl.com/q8s3bx
Keep going strong, LPC! Yay!
By now I have a rather daunting backlog of Science Daily updates in my e-box…so, whenever I have a snippet of time, I try to go through a few. As I did yesterday, which is when I came upon a very promising article (http://tinyurl.com/qxcf96) on EGCG, extracted, as we know, from green tea.
A recently-published Mayo Clinic trial report tells us that EGCG (capsule form) is well-tolerated by CLL (chronic lymphocytic leukemia) patients, even at high doses….by the way, according to the Mayo researchers, even those who took as many as 2 grams twice a day did not reach the maximum tolerated dose…
A few exciting trial results: lymphocyte count was reduced in one-third of participants. Furthermore, The majority of individuals who entered the study with enlarged lymph nodes saw a 50 percent or greater decline in their lymph node size.
EGCG is currently being tested on CLL patients in Phase I and II trials. In fact, I just checked the Clinical Trials website and found that the Mayo Clinic study is still recruiting, so if you have CLL, you might be interested in seeing whether you might qualify: http://tinyurl.com/neld9s
Well, well. Good stuff. I have been thinking about adding EGCG to my intake (again). Since I have been so busy recently, though, I have been taking only my regular daily dose of curcumin, quercetin and fish oil…a mere 24 capsules a day…ah yes, I think it’s about time to add more capsules to my regimen…
Ah, here is the link to the study abstract, published in the “Journal of Clinical Oncology” on May 26 2009: http://tinyurl.com/lz3ar5