TAB’s July 2021 update

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 Best of luck to all fellow MM’s. TAB

Surgery? Probably…

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? Potter, 7 kilos of happiness

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!

“Globally, incident and death MM cases have more than doubled over the past 30 years.”

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.

First link:

Second link:

Incidentally, if you are an expert in the field of statistics, please leave me a comment or contact me privately…Thanks!

Ooooh…and what about Monaco??? I was shocked…!

Vaccinated against Covid-19

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)…

Then in April I read about a study that tested the Pfizer vaccine on MM and CLL patients. Here’s the press release published in Hematology:

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…

We grieve alone

This morning we took Peekaboo, our 14-year-old kitty with an inoperable sarcoma, to the vet clinic for the last time.

She’s in a happier place now, so I hope, at least. A place with no pain.

Stefano and I grieve alone.

Those of our friends who don’t have animals in their lives just don’t understand our grief…they don’t understand the intense love that we have for our furry companions. And yet losing a cat can be as difficult as losing a human companion, according to this Cornell University article:

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…)?


I will miss you so much, sweetie.

Much love.


Time goes by so quickly that I can’t keep up. So much to do around the house (etc.), the cats (etc)…etc. 

And then…Coxarthrosis came into my life… 

The pain began months ago…I don’t remember exactly when,  but I recently found an October 2020 text message sent to a friend in which I wrote that I had some pain in my hip and unfortunately had to postpone our rendezvous. So something was clearly happening as many as seven (!) months ago. Back then, though, Stefano and I both thought it was just a pulled muscle or something minor that would heal itself in time…

I began paying attention only when the pain got worse (I have a high pain threshold, so that probably took a while…I just can’t remember…too much going on…), and I began to limp. By then, though, we were at the beginning or perhaps even in the middle of our kitchen renovation, and I really couldn’t spare the time to go for an X-ray. So I limped through the renovation…and, FTR, I am still limping.

Then of course there was the issue of Covid-19. In those winter months, Tuscany, and Italy in general, was going through some very difficult times. Orange, then red zones, hospitals full of Covid patients…very sad. I had to choose between limping around the house OR leaving the house and possibly contracting Covid. I chose the former. Limp limp limp. 

But then the Covid vaccination campaign began, and the numbers started going down, thank goodness. Last week I felt it was safe enough to go have an X-ray…Three X-rays, as it turned out. I had hoped it was simply an inflammation of some sort, which could easily be taken care of, but no, the diagnosis was coxarthrosis, which is basically degenerative osteoarthritis of the hip joint. Yes, degenerative. Bummer. 

Incidentally, in case you were wondering (I certainly did!!!), it has nothing to do with my myeloma. Phew. No, it’s a common condition with elderly folks (but not just the elderly…Younger folks can get this thing, too…And I’m not even 60 years old…), BUT you can also get coxarthrosis as a result of a fall, and I did fall very hard when I fractured my shoulder a few years ago. Oh well. Who knows? It doesn’t really matter how I got it, to be honest. I will have to live with it, period. What I don’t want to live with, however, is the PAIN, which  can certainly be managed.

And that is why, right after my diagnosis, I asked  the wonderful pharmacist, Dr. Ferruccio Balducci (Farmacia Balducci, in Calenzano, Florence), who prepares my C3 curcumin complex capsules, to help me deal with the pain and perhaps even slow down the progression of this type of arthrosis. That was the right move: he has a lot of experience in this field, and he prepared some capsules that should help, not just with the coxarthrosis but also with the myeloma. One of the ingredients, in fact, is Boswellia, which I tested some years ago for my MM. Too early to tell if the capsules are working, but it does seem that my pain has diminished in the past few days, and I am moving around more easily. Time will tell. 

Now I need to find, and make an appointment with, a good orthopedist, since it is likely that I will have to have surgery at some point in the future…Unless we can stop the degeneration, eh! A girl can dream, right? 🙂 

In other news, more positive news!, Stefano and I have registered to have the anti-Covid vaccine. By July we should both be fully vaccinated. We’ll still wear our  masks, though. I recently came across a study on MM and CLL patients, which, as I recall, included nine (?) smouldering myeloma folks. The vaccines were, on average, about 50% effective on the MM patients. Still, as I told my family doctor, 50% is better than 0%. 

On an even more positive note, we just booked a week in August of TOTAL RELAX in a hotel located on a stunningly beautiful lake up in the Dolomites, northern Italy. Can’t wait!!! 

Anyway, sorry for having written so little in the past few (okay, several!) months, but I’m sure you will understand and forgive me.

Okay, I must be off now. Take care, everyone!!! Ciao!!!

P.S. Some of you mentioned how lovely our marble countertops look in the photo with Potter (in a previous post). It’s actually NOT marble, but an easy-to-clean and very resistant (to cat scratches, e.g.) blend of natural quartz stone, porcelain, and glass. It’s fabulous. We love our new, functional kitchen!!!

P.P.S.S. I wanted to post a few photos of my flowers and the kitties, but the system refuses to upload them. Oh well!!! More luck next time…

Time flies

Well, many things have happened in the past month or so, except for finding the time…well, okay, to be honest, except for finding the desire to write a post (yes, I’m, still at a bit of a standstill there, unfortunately…not sure why…oh well).

But everything else is, well, stable, or as stable as it can be, which is positive.

Peekaboo, however, gave us a BIG scare about two weeks ago. I really thought she was on her way…out. Actually, in retrospect, it’s kind of a funny story (?), so here goes…

One morning I noticed that Peekaboo wasn’t responsive. She hadn’t come down to have breakfast with the other cats, as she always does. She was upstairs, fast asleep on the guest room bed. She didn’t even lift her head when I came into the room, which was also very unusual. She’s a big talker, you see, and she likes to meow (complain) at me whenever I’m within a few feet of her.

I didn’t want to wake her up…didn’t know what to do, really…but I felt that something was wrong. I called the vet clinic and spoke with a vet who agreed that she should be seen as soon as possible. An emergency appointment. The vet’s voice was not very encouraging. You may remember that Peekaboo has an inoperable, malignant sarcoma near her nose…

As soon as I put the phone down, I burst into tears. I thought this was the end. Memories flooded my mind, upsetting me even more. I went to get the cat carrier, which we keep in the room where Peekaboo was sleeping.

And then, as I pulled out the carrier, I heard a familiar “meow, meow, MEOW?!!!” behind me. Loud and clear. I turned around, and there she was, that little rascal, sitting up in bed with both eyes wide open (her left eye is usually half closed now, see photo), giving me a piece of her mind about the cat carrier, I presumed.

She proceeded to get up and jump off the bed with the grace of a ballerina, no kidding, and went downstairs to eat. Ahhhh, cats! I canceled the appointment at the vet clinic. I did take her to the vet the following week for a just-in-case check-up. A good thing I did that, too: the inside of her mouth was red and inflamed. The vet gave her two shots of cortisone and antibiotics. She’s going to have to have these shots every two weeks, perhaps for the rest of her life. Incidentally, she’s doing well, all things considered.

Anyway, that’s just one thing…keeping a close eye on Peekaboo…

Another is that we also finally (almost) finished our kitchen renovation. What a headache that has been. Now that it’s (almost) over, I can say it was worth it, but a few weeks ago I’d had enough and wished we’d just kept our old kitchen, which we’d had for 20 years. But okay, in the end it was worth it: we now have a beautiful kitchen with a big island (our dark old kitchen only had very narrow, impractical countertops). We love it. So do the kitties. The photo shows Potter on the island…

And of course I’ve been following what is happening with the Covid-19 pandemic, the vaccine issues, etc. Unfortunately, Tuscany isn’t doing that well right now. We’re still in a red zone, and the hospitals are full. I’ve been in self-isolation now for ages, it seems. I leave the house, double-masked, only for emergencies…like taking a cat to the vet. Otherwise, I’m at home all the time, which is fine, since I have plenty to do here.

Anyway, enough blabbering for today. Stay safe, everyone, and wear your  masks!!! Take care! Ciao!

P.S. As I re-read my post, I almost erased the part about the kitchen renovation. In a difficult moment like this one, it seemed like such a silly,  boring piece of fluff. But then I thought that sometimes we all need a bit of…fluff. So I left it in…


Well, about two weeks ago we received the sad but expected news that Peekaboo has an inoperable and malignant nasal tumor located on the left side of her face, the side that has become deformed. The vets refer to it as a sarcoma.

Because of her age (she’s almost 14 years old) and other factors, the vets and Stefano and I are in agreement: we’ll do nothing, except monitor her and (try to) make sure she’s not in pain (although it’s very difficult to figure out if a cat is in pain or not)…

I’ve begun giving her curcumin, mixed in with her wet food, but it’s way too early (just a few days) to tell if it’s doing anything. My hope is that it might slow the progression of this blasted tumor.

But I should have begun giving her curcumin months ago. I have the sinking feeling that it is too late…On Sunday, you see, to my absolute horror, I found two canines on the floor. Peekaboo’s canines. Not at all a good sign.

Unfortunately, there’s not much we can do except shower her with love, give her cortisone and curcumin, enjoy her (still) feisty, tough personality, make sure she’s comfortable, and…wait.

Difficult times ahead…


A few days ago I discovered that my blog reader/friend Dieneke Ferguson had died months ago, in October. She had been diagnosed with MM in her 50s for which she had undergone many conventional treatments. When she was left with no options (but the final one!!!), many years ago, she came across my blog, got in touch with me, and began taking curcumin, which managed to stabilize her so much so that in 2018 she was interviewed by BBC Radio 4. That interview, if my memory serves me correctly, was picked up by other news agencies. Dieneke became quite well-known.

Unfortunately, she later developed ovarian cancer. The last time we communicated, she was undergoing conventional treatments. Well, with all that was going on here in Florence, I didn’t hear of her death last October.

Dieneke and I had planned to meet someday…In fact, she had invited Stefano and me to stay with her so many times; I’m sad to say, however, that we never met in the flesh. But even so, I was attached to Dieneke, her spirit, her optimism…Her death greatly saddens me.

Here is an article about her:

Ciao, Dieneke…

Patients’ perspectives of living with MGUS

Today I’m publishing a quick post (I have a zillion things to do today, including taking Peekaboo to the clinic for her CAT scan!) about a recent qualitative study on MGUS patients that is online for FREE this month. Many MANY thanks to Blain Murphy, one of the authors of the study, for getting in touch with me about it, otherwise I might have missed it. Correct that: I would have missed it. 😉

Here’s the link:

I don’t have the time to read it before posting, but I’m sure it will be of great interest to all of us, even if those of us who are beyond the MGUS level. I skimmed through it just now, and yes, this will be a good read…I recognize all the feelings I had at diagnosis (about 100 years ago!)…shock, anxiety, incomprehension, etc.

And, remember, the study is available for FREE only this month, so hurry up and check it out.

Okay, off I go, busy busy busy! Ciao!