It’s been a long time since I’ve written a myeloma research post, but a recently published Korean abstract made my fingers itch to hit the keyboard. Here goes…
Remember ursolic acid? Well, perhaps not, since the last time I wrote about it was, oh, as long ago as 2007, the year I began blogging, in fact. What is ursolic acid? It’s a pentacyclic triterpenoid (yeah, I know, I know…) that can be found in a lot of foods, such as rosemary, apples, cranberries, pears, oregano, holy basil, thyme and prunes.
Back to the Korean abstract (the full study, from what I can gather, hasn’t been published yet), which I read about a half hour ago: it reports that the ursolic acid found in the root bark of Morus Alba, more commonly known as white mulberry, doesn’t just inhibit “the proliferation of RPMI-8226 multiple myeloma (MM) cells,” but it kills them, too. Oh yeah!
Conclusion: “These findings suggest that MRBE and its active ingredient, ursolic acid, […] may have significant chemopreventive potential against MM.” Very exciting, don’t you think? Of course, we must remember that this is a study that used MM cells in a lab setting (not human patients, I mean), so, as always, we mustn’t get overly excited. But still, a wee bit of excitement can’t hurt, right? 🙂
I have already ordered some white mulberry tea, while I do some more research to find a reliable source for ursolic acid (I hope to find the Morus Alba extract…but so far, I’ve found mainly rosemary extracts…). No idea if the tea will do any good, but at least it can’t hurt!
I had my bone marrow biopsy yesterday (BMB in English, BOM in Italian). The easiest I’ve ever had. It wasn’t completely pain-free, which would have been, methinks, impossible (after all, the needle has to penetrate your pelvic bone!), and in fact a couple of times I felt what I can describe as painful shockwaves running down my right leg, but no, nothing unbearable. And the BMB was also over quickly, compared to my three others.
After it was done, the nurse bandaged and iced me up and then asked me to turn over and lie on my back to apply pressure on the area. That was nice. My previous BMB doctors had simply said, “okay, you can get up now.” There was no lying about, no ice, no asking me how I felt, etc. 🙁
This goes to show that you can’t compare BMBs with other patients. Each experience is unique and depends mostly on who is performing the procedure. My previous BMB doctors had an aggressive approach, jamming the needle into the bone and making the procedure very painful for me and probably for all their patients, not just right there on the spot but afterwards as well. One of my worst BMBs had me limping for about a week. I remember it well.
But yesterday, as I said, I only had an insignificant amount of pain. The haematologist was as gentle as he could be. And today I am happy to report that I am fine. I don’t even have a bruise. Amazing. Now we just have to wait for the results, which will arrive late next month.
I’m quite pleased. This light-handed haematologist (who, by the way, was recommended to me by a member of my surgeon’s team) is now my new haematologist. The first thing that I liked about him was that he didn’t roll his eyes when, during our first meeting, I told him that I’ve been taking curcumin since 2006. On the contrary, he told me that some of his patients take curcumin (hmmm, blog readers, perchance?).
Stefano and I had a lovely relaxing holiday in August. The first leg of our trip consisted of three days in the medieval town of Sirmione on the shores of one of Italy’s largest and prettiest lakes, the Lago di Garda.
To be honest, though, I couldn’t wait to leave. It wasn’t the heat that got to me (after Florence, practically anything would have felt cool…), but rather the throngs of unmasked tourists surrounding us as we walked along the town’s narrow streets. I found that quite unsettling. True, you don’t have to wear a mask now when you’re out in the open, but those streets were too narrow to be defined as “open,” in my opinion. Stefano and I wore our masks, of course (in addition to being fully vaccinated against Covid-19 and having our Green Passes).
We do plan to go back to the Lago di Garda someday, but never again in summer…too hot, too crowded…
By the third day of our holiday, we were more than ready for a change, namely for some cool air, which we found at the Lago di Braies, known as the Jewel of the Dolomites. And a Jewel it really is! Lago di Braies is the most beautiful lake I’ve ever seen in my life. Its colours, ever-changing, were absolutely glorious. We spent a week in the (only) hotel facing the lake. Our top floor room had a balcony with panoramic views of the lake and the surrounding mountains (see above photo). Stunning. I would have been happy to have spent the entire week on that balcony, reading and enjoying the views.
But we didn’t, of course! We went on rather long and sometimes challenging walks. I admit that in the beginning I was a bit concerned about my hip…But I have to say that even though we walked between 5 and 7 kilometres every day, I didn’t have much pain, if any. Really weird. The lack of pain may not sound like much, but when I get to my medical stuff later on, you will realise that it really is (was) a big deal.
Check out the stairway (photo above, on the right) I climbed to get to the other side of the lake one morning. That whole path was up and down and up and down. Even regular hikers, in good shape, had to stop now and again to catch their breath…
But I’m so glad I did it: the views of the lakes and mountains were magnificent…
After a week at the Lake of Braies, we stayed a few nights at the nearby Lago di Misurina, another lake in the Dolomite range, mainly because of its strategical location near the Tre Cime di Lavaredo, the three most famous peaks in the Dolomites, and to Monte Piana, a very interesting World War I open-air museum located on a plateau at more than 2,300 metres above sea level, with amazing 360° views of the surrounding mountains. You can still see the trenches where the Italian and Austro-Hungarian soldiers fought for two years…Unbelievable…Anyway, highly recommended, if you are in the area. Again, my hip and I did quite a bit of climbing and hiking there, too.
On our way back to Florence, we stopped for three days in the city of Mantova (Mantua). I have nothing but high marks for Mantova. But, for reasons I cannot explain, it got harder and harder for me to walk for more than a few kilometres a day, if that…Odd!
Our holiday ended on August 28, when we finally got back to Florence and to our kitties who had been totally spoiled by our cat sitter. 🙂
In early September, I went through a battery of pre-surgery tests and met with various doctors.
My first meeting was with my orthopaedic surgeon and his assistant. When I told them about all the walking I’d done, especially around Lake Braies, they were visibly surprised. Speechless, in fact. It was there and then that I found out that my arthrosis is worse than I (we) had initially thought: I’m in stage 4 (the most advanced stage of arthrosis), not between stages 2 and 3, as it had seemed from my first X-ray. Yikes!
Looking back on our August holiday now, I have to admit that I feel a bit like Wonder Woman…hiking and walking for kilometres and kilometres with arthrosis in stage 4, I mean…Not bad, eh?
Getting back to my surgery story, I aced all the preliminary tests (electrocardiogram, etc.), but…yes, there is a but. My haematologist and I agreed that, before having this surgery, I should have some myeloma-related tests done, too. It makes sense.
My first test will be next week: my fourth BMB (bone marrow biopsy). Ouch! I am also going to have a PET scan and a CAT scan. In a nutshell, we want to make sure that I don’t have any bone lesions. If that is the case, no bone lesions, I mean, as I hope and imagine!, I will go ahead with the hip surgery as soon as possible.
If not…well, we’ll cross that bridge when (IF!) we come to it…
Just a quick post to say that Stefano and I are finally on holiday and leaving for our 18-day trip to northern Italy in just a couple of hours. I won’t be posting anything in this period. A holiday is a holiday…
Even though we are both vaccinated against Covid-19 (he undoubtedly is more protected than I am, because of my impaired immune system, but, still, I should be somewhat protected…), we will take precautions, huge precautions: stay away from crowds, double-mask if we go inside anywhere, wash/disinfect our hands as often as possible…in short, better be safe than sorry. That Delta variant is nasty business!
But…we both need a break. So, in spite of Covid and of people who disregard common sense, off we go, armed with masks. 🙂
Take care, everyone! I hope you have a lovely August. Stay safe!
Well, yes, I’m having hip surgery in late September. The test results from my recent MRI and X-ray showed that the coxarthrosis is getting worse…fast. But we have holiday plans for two weeks in August, and nothing is getting in the way of those. So…September.
Today I made appointments for heaps (or hips, hehe) of pre-surgery tests and exams. I will be meeting with the surgeon and his team in early September…I suppose, since I’ve never had surgery before, that I should view this as an interesting experience, one that I could certainly have done without…but…oh well…
This is what I know thus far: I will be up and walking the day of the surgery (no kidding). My surgeon does what is called Fast-Track surgery, which lessens the patient’s recovery time as well as a bunch of surgery-related risks. I will also be awake during the procedure (note to myself: get some good headphones!), which is a great relief to me, again because of faster recovery issues.
If all goes well, I should be home within a few days. Because of Covid restrictions, Stefano won’t be able to visit me, even though we are both fully vaccinated, so the sooner I am able to go home, the better. We don’t like to be apart! Anyway, in early September I will know more about what I’m facing, and you can be sure that by then I will have prepared a long list of questions for the surgical team. 🙂
The only thing that worries me is the risk of post-op infections due to my impaired immune system. And because curcumin is a blood thinner, I’m going to have to stop my intake before surgery…so curcumin, which kills viruses and bacteria, won’t help with preventing any possible infections. That’s a bummer.
Anyway, I’m sure I’ll be fine.
Oh wait…Another thing that worries me is that I might end up looking like the horse in this Far Side cartoon (sorry, couldn’t help myself…love the Far Side…hehe)…
For now, though, I’m concentrating on our upcoming holiday.
TAB wrote his update as a comment to the post I wrote about him back in 2012, but I decided that this update should be turned into a post, as follows…
TAB’s Update 7/9/2021
Smoldering 20 years, progression 2 years, Velcade for 4 months = complete remission.
My journey with IgA Lambda Multiple Myeloma has been a long one. At age 80 I am finally in complete remission. During the first 20 years I took only over the counter supplements which in my opinion kept the beast at bay. I plotted the results of my blood tests using Excel and relied on the trend lines to keep track of how I was doing. After a few years of supplements my M-spike leveled off and then started decreasing. This was not a cure by any means but it seemed to keep the beast at bay for 20 years with no CRAB symptoms. Then something caused the M-spike to progress from about 3000 mg/dl to almost 6000. A bone marrow biopsy showed 60%. Some results were approaching CRAB levels. At this point is was a no brainer, I had to consider treatment for overt MM. I discussed my options with by Oncologist and we decided on VRD (Velcade, Revlimid and Dexamethasone). Due to the high cost of Revlimid we (mostly me) decided to do the Velcade SQ and Dex (20 mg) only. After 15 Velcade subcutaneous injections in the tummy and 20 mg of DEX once per week over a 4 month period my blood work showed a remarkable return to normal levels. The only side effects were mild peripheral neuropathy (tingling sensation) in my toes. My latest blood work (7/9/2021) 5 months post Velcade treatments included : CBC, Platelet Count, Serum Electrophoresis, Beta-2 Microglobulin, Immunoglobulins (IgA, IgG and IgM), Complete Metabolic Profile, Kappa /Lambda serum Light Chains and Serum Immunofixation. A copy is included in my report. Of all of these tests only one test was flagged low and that was IgM. I have never had a blood test this good in my entire life! The most important result was the Immunofixation test showing “no monoclonals present”. This is according to my doctor a very sensitive test. My doctors conclusion, and I quote, “You are in complete remission and I tell my myeloma patients about your results”! I am back on my supplements which I am hoping will keep me in remission as long as possible. Of course there are no guarantees. My next blood work is in 4 months. I have documented all of my blood work and my supplement regimen in my latest report. If anyone would like a copy of my report they can E-mail me at firstname.lastname@example.org. Best of luck to all fellow MM’s. TAB
On Monday I’m going to have a few more tests for my coxarthrosis, including an MRI. Then the orthopaedic surgeon and I will decide what the next step will be, probably surgery (this fall). Luckily for me, I am in the hands of one of the best, if not THE best, surgeon in the Florence area. Super nice guy, to boot, very approachable…
So today I’m reaching out to my blog readers with MM, SMM, MGUS:have you had hip replacement surgery?
If so, then please please PLEASE leave me a comment here or on Facebook, or send me an email or a message via the blog’s Contact form…I would be extremely grateful to hear about your experiences.
In particular, I’d be curious to know how you prepared for surgery: did you have any special tests done? How (long) was your post-surgery recovery time…Hmmm, yes, things like that. Thanks a lot!
A bit of newsy news: this weekend I’ll be entering a new decade…I’m turning 60. WOW!!! That means that I’ve been living with SMM for more than 16 years…SIXTEEN YEARS!!! And, if we add MGUS to the mix, that number goes up to 22 years.
Who’d have thought?
And, apart from this coxarthrosis business, which is a bit bothersome, I admit, but, I repeat, totally unconnected to the MM, I’m doing well, very well. Stefano and I are now fully vaccinated against Covid-19 and have our Green Pass, but we still wear our masks whenever we leave the house. Better be safe than sorry!
Speaking of leaving the house, we will soon be off on holiday, visiting three of the most beautiful lakes in northern Italy. A relaxing holiday, just what we both need. Perfect!
Take care, everyone! 🙂
P.S. The photo shows our Potter who now weighs 7 kilos…A big bundle of joy!
If you have been reading my blog for a while, you must know what I think of statistics. 🙄
Sure, statistics can be useful and also interesting, but only up to a point…Have a look at Prof. Stephen Jay Gould’s essay on statistics, titled “The median isn’t the message,” which really changed my outlook on myeloma statistics (all that “5-year survival” talk, I mean).
So, yes, you guessed it. Today I have a study chock full of statistics. But these are actually very interesting myeloma statistics. For example, one of the findings of the study is that the number of myeloma cases AND deaths in 2019 has more than DOUBLED since 1990. Cases…and deaths…more than doubled…in a period of 30 years? I was actually surprised…I mean, you’d think there would be at least SOME improvement. Hmmm…
Anyway, without further ado, here goes…
If your reading time is limited, the first link (below) gives a brief summary of the study. The second link will take you to the actual (full) study…much more data, yes, but much more interesting. Again, if your time is limited, just skim through it and read the Conclusions.
I admit, I wasn’t always enthusiastic about the Covid-19 vaccines. Vaccines are usually tested for years and years and years before being approved…but the Covid-19 vaccines were approved within months. It seemed to go too fast, way too fast. I decided to wait and just stay at home, except for emergencies (such as trips to the vet)…
The press release gives the impression that our response to the vaccine is on the low end of the spectrum, 50% at the most…But keep in mind that this study was carried out only after the FIRST dose of Pfizer, and that the average age of these MM patients was 83. Clearly, more data is needed…
Still, not very encouraging…
However, any degree of protection is better than zero protection, right? I talked things over with my family doctor (a genius) and decided it was time to sign up for the vaccine.
I waited for my turn (since I am not elderly, or a healthcare worker, or a police officer, etc., my turn was based on my date of birth) and had my first dose of the Pfizer vaccine on May 22nd. No side effects whatsoever. Second dose in early July. Stefano was given the Moderna vaccine, which gave him a very sore arm for a couple of days. Like me, he’s getting his second dose in early July. Yay!
Even when we’re fully vaccinated, though, we’ll still wear a mask. With Covid variants popping up all over the place, it’s best to be safe than sorry…
Keshé, Puzzola, Piccolo, Priscilla, and Peekaboo are all gone now.
My heart is heavy today.
Peekaboo. My strong, beautiful, curious, tough girl. Who is going to head butt me now? Who is going to greet me when I come home and give me a long list of all the things that happened during my absence (she was such a talker…)?