Monthly Archives: February 2010

Flying with low hemoglobin

A myeloma list member asked me if I would publish the following question: has anyone with low hemoglobin ever been on a long flight? If so, he would appreciate receiving details, advice etc. (If you don’t want to leave a public comment, please use my Contact form…I will forward any messages to him).

His wife, whose hemoglobin is 7.5 g/dL, is planning a trip from Japan to Los Angeles, U.S.A. The airline, however, informed her that she cannot take any supplemental oxygen on board unless she applies for permission three months in advance.

I found a couple of items on this topic just now: Patients with anemia must undergo medical assessment before embarking on a flight. Anyone with a hemoglobin level below 8.5 g per dL (85 g per L), as in sickle cell anemia, should have an oxygen supplement (see http://tinyurl.com/y962hax and also http://tinyurl.com/ybgnetf).

I am not sure what I would do if I were in her shoes…but, after reading the above-mentioned links, flying without supplemental oxygen sounds a bit risky to me…even though the second link states only that it is “generally advised” to have some extra oxygen on hand…Any  further thoughts? Thanks!

Too tired to think…

I just got back from work and am too tired to think or post about anything much, zzz!…so I am updating my Facebook pages (=my personal profile AND my “Margaret’s Corner” page) and looking up some silly stuff. Nothing too taxing, in other words. By the way, my blog on Facebook now has 44 fans (yaaay!) and an 87.7 Quality Rating, whatever that means…

A Facebook friend reminded me of this funny set of commercials…I had seen them a while ago but hadn’t yet posted the link…enjoy! http://tinyurl.com/bmvow4

Wonderful and very helpful responses to my “Fear” post, by the way. I will post my own thoughts soon…not today, though (zzz…). Thanks, everyone! :-)

Fear

A blog reader with SMM (= smoldering myeloma) asked me to write a post on fear…specifically, on how to deal with the fear of starting or going through treatment or the fear of having our blood tested. He is amazed at how incredibly stressed out he gets before having his periodic blood tests and would like to hear how others cope…

I thought it was a great suggestion. So I began writing this post. But nothing came to me. No words. No comments. No bits of advice. Very few thoughts at all, in fact. Why? What’s wrong?

I have some thinking to do in the next few days…

Squawk!

I received a very amusing e-mail from a blog reader (thanks!) today, and, as I usually do, I checked Snopes (the urban legend “debunker”) before publishing it. Well, it appears that the following list may be true, but there are so many versions of it by now that…well, who knows? No matter…here are some of what I thought were the funniest (in fact, I am going to use them in class tomorrow, hehe):

Here are some actual maintenance complaints/problems, generally known as squawks, recently submitted by Qantas pilots to maintenance engineers. After attending to the squawks, maintenance crews are required to log the details of the action taken to solve the pilots’ squawks.

Problem: Left inside main tyre almost needs replacement. Solution: Almost replaced left inside main tyre.

Problem: Test flight OK, except autoland very rough. Solution: Autoland not installed on this aircraft.

Problem: Something loose in cockpit. Solution: Something tightened in cockpit.

Problem: Dead bugs on windshield. Solution: Live bugs on backorder.

Problem: Number 3 engine missing. Solution: Engine found on right wing after brief search.

Problem: Autopilot in altitude-hold mode produces a 200-fpm descent. Solution: Cannot reproduce problem on ground.

Problem: Evidence of leak on right main landing gear. Solution: Evidence removed.

Problem: DME volume unbelievably loud. Solution: Volume set to more believable level.

Problem: Noise coming from #2 engine. Sounds like man with little hammer. Solution: Took little hammer away from man in #2 engine.

Problem: Whining noise coming from #2 engine compartment. Solution: Returned little hammer to man in #2 engine.

Problem: Friction locks cause throttle levers to stick. Solution: That’s what they are there for!

Problem: IFF inoperative. Solution: IFF always inoperative in OFF mode.

Problem: Suspected crack in windscreen. Solution: Suspect you’re right.

Problem: Aircraft handles funny. Solution: Aircraft warned to “Straighten up, Fly right, and Be Serious.”

Problem: Unfamiliar noise coming from #2 engine. Solution: Engine run for four hours. Noise now familiar.

Problem: Mouse in cockpit. Solution: Cat installed.

Breast cancer news…

Here are a few interesting items that may be relevant to us myeloma folks, too, especially the first one:

1. A November 2009 study showed that curcumin and piperine inhibit Wnt signaling in breast stem cells. Remember this pathway? (If not, see http://margaret.healthblogs.org/2007/04/27/quercetin-wnt-signaling-pathways-and-myeloma/) Yes, it is involved in myeloma cell proliferation and growth, too. Hmmm, I had forgotten that quercetin inhibited Wnt…I should probably add it to my intake again…

Anyway, an excerpt from the abstract tells us that Curcumin and piperine separately, and in combination, inhibit breast stem cell self-renewal but do not cause toxicity to differentiated cells. These compounds could be potential cancer preventive agents. See: http://tinyurl.com/yz2wb6f 

Science Daily provides a good, easy-to-read summary of the study: http://tinyurl.com/ylcfqbc Interesting excerpt: this paper, published online in the journal Breast Cancer Research and Treatment, is the first to suggest these dietary compounds could prevent cancer by targeting stem cells. The first of many, I hope!

2. According to the most recent Ralph Moss newsletter, four homeopathic remedies cause apoptosis (= kill) breast cancer cells: It was particularly interesting that the cell-killing effects of two of the remedies investigated in this study, Carcinosin and Phytolacca, appeared similar to the activity of paclitaxel (Taxol), the most commonly used chemotherapeutic drug for breast cancer […]. See: http://tinyurl.com/yzu6frk

3. According to a study published earlier this month, parthenolide might reduce breast cancer cell resistance to tamoxifen. See this Science Daily report: http://tinyurl.com/yfod7gp The study abstract is here: http://tinyurl.com/yz88rmy Interesting. Too bad that feverfew didn’t seem to work for me…but I will probably give it another go at some point in the future…

The opposite of what we knew…

Do you remember all the hoopla caused by a June 2009 study on green tea and bortezomib? If not, please click here: http://margaret.healthblogs.org/life-with-myeloma/discovery-of-curcumin/curcumin-and-bortezomib/egcg-and-bortezomib That study came as very bad news for devoted green-tea-drinking patients on Velcade, even though, as Dr. Durie pointed out during a patient seminar that I attended last fall, those patients can still have their cuppa…just not on their Velcade days…

Now for today’s topic. Not too long ago, a blog reader (thanks!) reminded me of a November 2009 study that I had read in December but hadn’t posted about… Sherlock, grazie!, sent me the full study, whose main result is spelled out in the abstract (http://tinyurl.com/ydyaqca): EGCG is synergistic with bortezomib (=Velcade) against the KM3 multiple myeloma cell line. SYNERGISTIC??? That means that EGCG and Velcade are more efficient myeloma cell assassins when used together

Wait a sec…in June we were told that EGCG antagonizes bortezomib (see: http://tinyurl.com/yfe24cl, full text also available for free)…this group of researchers found that not only was EGCG not toxic or (at higher concentrations) only mildly toxic to myeloma cells, but also it prevented bortezomib from doing its job. In other words, based on the June study, EGCG actually protected the myeloma cells…from bortezomib.  

When I first read and posted about the June study, I don’t remember being bothered by the occasionally arrogant language used by the authors…especially in this excerpt about EGCG: this “miracle herb” extract is also consumed by many cancer patients who follow popular trends and self-medicate with complementary and alternative medicine (CAM) in hopes to support their conventional therapy or to lessen the burden of side effects—sometimes without the knowledge of their health care provider. “Popular trrrends”??? I say, I am feeling quite offended right now…how did I miss that condescending tone when I first read the study last year? Well, I suppose I was more focused on the importance of the issue at hand, i.e., warning Velcade-users against taking EGCG or even drinking green tea…

I also (!) didn’t question the finding that EGCG, when used alone, wasn’t able to kill even one miserable little myeloma cell, even at concentrations that are much greater than the typical concentrations achieved in humans. This is contrary, e.g., to the results of an authoritative 2006 study (see: http://tinyurl.com/yzsdu38)… Makes me wonder…

One more thing. I would like to point out that, incredibly, the online media paid no attention whatsoever to the November pro-EGCG study, whereas the complete opposite is true of the June anti-EGCG study…in fact, if you do a quick online search, you will still find warnings, even recent ones, about drinking green tea with bortezomib…even if you type the words “EGCG” “bortezomib” and “synergy.”

What you will not find (at least I did not) is the slightest mention of the November 2009 study, the one with the synergy results. That story just wasn’t picked up, for…some reason (I can only guess…). Well, today I decided to fill the gap…not because I think that the November study is a better one, that is not for me to judge!, but because I don’t think it fair that this study be so blatantly ignored…

Okay, for reasons of simplicity, from now Study A will be the June anti-EGCG with bortezomib study, and Study B will be the November pro-EGCG with bortezomib study.

Just a quick glance at the two studies showed that there were differences in caspase activation…In Study A, EGCG blocked the activation of caspase-7, which essentially stopped bortezomib from exterminating the myeloma cells. In Study B, instead, EGCG activated different caspases, specifically caspase-3, -8 and -9, leading to the death of the myeloma cells. Some day I should really look into this caspase business…until then I will not be able to figure out how, why or if this might be significant (I’d be glad for some help, here!)…

For lack of time, sorry, I am going to jump to the Discussion part of Study B. As I had hoped, this is where the authors compare their own results to the ones of Study A (identified as “they” in the following excerpts):

-They use a relative [sic] lower concentrations of EGCG (10 mM) and bortezomib (10 nM), whereas we used a relative [sic] high concentration of EGCG (25, 50, and 100 mM) and bortezomib (20 nM). So let’s see…Study A used a lower dose of EGCG and bortezomib, Study B a higher one. Okay, that is certainly a difference.

-We focused on the mechanism of EGCG inhibiting myeloma cell growth and inducing cell apoptosis potentiated by bortezomib, whereas they focused on the effect of EGCG on bortezomib in myeloma cells. So, we found that EGCG inhibits myeloma cell growth and induces cell apoptosis potentiated by bortezomib. This part wasn’t clearly worded, in my opinion (but it is true that I just got over a cold…is my mind still fogged by a bit of congestion?). In fact, I don’t see any difference at all…Mental note: I need to find the time to compare how the experiments were carried out in both studies.

-This may be because of different drug concentrations or different cell lines. Study A and B (and even the above-mentioned 2006 study, by the way) tested EGCG and bortezomib on different myeloma cell lines. And different doses were used in both studies. Is that enough to explain their differing results? Possibly.

I found myself wondering about the different myeloma cell lines used in different studies. Interesting topic. I had no idea that there were so many myeloma cell lines. I began doing some research but had to give up. Too complicated and time-consuming…

Well, I admit, I am still baffled. I suppose that I would still be cautious about taking green tea or EGCG with Velcade. I would follow Dr. Durie’s suggestion. Best to be cautious. Still, Study B gives us some (green) tea for thought and shows how much we still have to learn…

P.S. Here is a list of things that Velcade patients should avoid taking: http://tinyurl.com/yk2tclg

Facebook outreach and the Myeloma Beacon article on curcumin

I never understood all the hype about Facebook…until relatively recently, that is. Let me explain…a couple of years ago, at the insistence of two myeloma list friends, I signed up on Facebook. To be honest, though, I found it all rather boring and eventually deactivated my account. Then, last fall, after learning that my sister, niece, cousin and a couple of my best Italian friends were on Facebook, I reactivated my account. I now actually see a reason for being there: connecting with friends and family…and having some fun. My cousin posts some hilarious stuff…

And now we get to the point of this post: yesterday, while nervously waiting to go pick up Pinga at the vet’s, I decided to put my blog on Facebook. On a whim. I don’t yet have a purpose in mind, except the obvious one, I suppose, of reaching out to others (even though, truth be told, I can barely keep up with my blog mail as it is!). I also thought that Facebook might offer a more direct and informal way to connect with other blog readers…so, if you are a member of Facebook, why don’t you become a fan of Margaret’s Corner, too?

***

The Myeloma Beacon just published an article on curcumin, see: http://tinyurl.com/yebc4qh. I was “interviewed” (via e-mail exchanges, since I live in Italy) by Francie Diep, who did an excellent job. I would only like to add that we will (almost certainly) never see wide-scale clinical trials testing curcumin, since, as I have written in past posts, drug companies have no interest in a substance that cannot be patented.  

Oh, and I would also like to explain what happened in the fall of 2005, which is when my former hematologist (who retired in the summer of 2006) urged me to begin chemotherapy. I refused, even though back then I didn’t know much about myeloma or even the difference between active and asymptomatic myeloma (etc.)…

I immediately contacted three internationally-renowned myeloma specialists who told me that, in the absence of certain symptoms, early intervention was a bad idea. They confirmed that I was still…barely…in the “watch and wait category.” In a nutshell: no CRAB symptoms, no chemo….this has become my mantra…

Anyway, soon thereafter I discovered the curcumin-myeloma clinical trial at the MD Anderson Cancer Research Center in Texas, and my life changed in many (positive!) ways…

I have been taking curcumin now for more than four years. Still stable, still smoldering…

Monday’s test…on a Thursday…

A blog reader/friend (thanks!) sent me the link to a “fun” test called “Monday’s Test”…she warned me that I should think carefully before answering…well, I thought I was paying attention, but my score turned out to be abysmally low…I was actually horrified! :-)

As a result, I recommend that you be wide awake before taking this test…Okay, now that you have your coffee mug refilled, click here: http://tinyurl.com/yfc3p58

P.S. Pinga was spayed this morning. My vet just called to let me know that she is fine (relief!!!). I am picking her up this afternoon…can’t wait! 

P.P.S.S. Mental note: never take a test of any sort on the same day a beloved kitty is getting spayed…!

“You MUST take curcumin!”

This morning Stefano and I accompanied my father-in-law to his appointment with the new oncologist, Dr. P. I must say, I was very favourably impressed by him…his manner, his approach, his sense of humour. Indeed, it was like meeting with a knowledgeable old friend, not with a specialist, which is how it should always be…but, unfortunately, most often is not…

My father-in-law had told me that Dr. P. didn’t use chemo or radiation, which seemed strange to me at the time, but that is what I reported here on the blog. Well, as it turns out, my father-in-law had misunderstood. This specialist is going to administer a chemo drug called fotemustine to my father-in-law…starting next week. Dr. P. said that fotemustine is very well tolerated and was very optimistic about the outcome, since the nodules on my father-in-law’s lungs are very small. I have more research to do…(incidentally, if anyone has experience with this drug, please get in touch with me or leave a comment here, thank you!)

Anyway, as soon as Dr. P. finished speaking, I began my spiel about curcumin and EGCG (and a few other things, including IP6 and boswellic acid). I handed over all the studies that I had found and was surprised to discover that Dr. P. had read almost all of them. But he really caught me off guard when he mentioned that a colleague of his is currently doing an in vivo study on curcumin and melanoma right there…in their hospital lab. And, he added, the results of this study are very promising. You could have knocked me over with a puffin feather! He then turned to my father-in-law and told him that he must take curcumin AND drink green tea while he does chemotherapy. Whoa…talk about unexpected! I was definitely not prepared for such a positive reaction…

Well, I don’t know what will happen…nobody does…but I hope to be playing cards with my father-in-law for many years to come…

The Terrible Polter…

I haven’t written anything in the past few days because I have come down with a bit of a cold (not surprising, all things considered!) and, on Saturday and Sunday, I even had a slight temperature. Today my temp is back to normal (update: slight fever again this evening, oh drat, chebarbachenoia!), but I am still somewhat stuffed up, and, truth be told, my mind is a bit on the foggy side.

On Friday night, when I began having the first cold symptoms, my first thought was “uh oh!” Because of my teeny tiny immune system, even the slightest cold quickly develops into bronchitis, which means that I have to go on antibiotics for at least ten days (=this hasn’t happened in a long time…in fact, I can’t even remember the last time I had a cycle of antibiotics…). This time, though, my cold, at least thus far!, has remained in my head…no sign of a cough (fingers crossed, knock on wood, tocca ferro!).

Here is what I am doing, in addition to my regular intake of curcumin and fish oil:

  1. I am using a Neti pot (see: http://tinyurl.com/5ks3p2) twice a day. Now that is a great invention. To be honest, I was skeptical that it would work…but, on a whim, last summer I bought two Neti pots. You won’t know if you don’t try, right? Stefano tried his first and noticed a big difference in his breathing (is he going to be terribly annoyed at me for mentioning publicly that he suffers from nasal polyps? Oh well …!). The Neti pot has really helped him clear out his sinuses and stay off cortisone…as long as he doesn’t get a cold, that is. I first tried my Neti pot in November or December, I forget exactly, when I felt a cold coming on. Wow. Amazing. I staved off the cold entirely. And, incidentally, the sinus cleansing process is not as gross as I thought it would be…!
  2. I am also taking two teaspoons four times a day of Sambucol, the black elderberry extract that I have written about in a post or two. Good stuff!
  3. And I am taking a couple of teaspoons of Manuka honey every day. Can’t hurt, could help.

Now I will explain the title of today’s post. My not-even-five-month-old kitten, Pinga the Terrible, is still in heat. Since last week, when this “heat” began, she has emitted sounds that could easily be used to scare folks out of their wits in a blood-chilling remake of “Poltergeist.” The strident siren will go off at different times during the night and day…the daytime hollering isn’t so bad, of course, but we are getting a tad weary of being awakened during the night…zzz…

As a result, I have nicknamed her “Polter(geist).” My tiny adorable cuddly amber-eyed Pinga, Pinga the Terrible Polter, who, by the way, is taking a cat nap between the keyboard and yours truly as I type this post. Luckily, she seems to be slowly coming out of “heat,” so, if all goes well, she will be spayed on Wednesday or Thursday. We have to act quickly, because cats go into heat again within a few days…and I seriously doubt we could survive another week of the alien shrieking…yikes!