I saw my haematologist today. The gist: I am as stable as a mountain. And yes, she confirmed that my numbers have improved compared to May 2009, except for the B2M, which will have to be monitored, she said. Apart from that, though, she was very pleased, and told me that we don’t need to meet again for another 6-8 months (I will, of course, send her the results of any blood tests).
As always, she was simply amazed that I haven’t had any infections (I haven’t!) and agreed with me that this is probably thanks to curcumin. She added that her main concern are my low IgM and IgA levels. Well, heck, they concern me, too, but it is also true that those two numbers have not changed for a long time now. She said that it might be a good idea to check my T-cell levels and added that particular test to my regular set. Interesting…
I brought up the issue of having another bone marrow biopsy, or BMB. As much as I hate BMBs, I haven’t had one in almost two years now, and the still-high percentage of neoplastic cells in my bone marrow is THE ONLY reason I am stuck in the SMM category. Every other marker is MGUS. My haematologist remarked that she doesn’t expect huge changes in my BM, but that it might be a good idea to have another peek. She gave me the name of a new BMB doctor who is reportedly even better than the one I had last time. That is a good thing to know for two main reasons: 1. patients here are not sedated; 2. my bones are as hard as granite. She didn’t think that a BMB was absolutely necessary and left it up to me to decide whether or not to have it. I am thinking about it…but my hip bone is already moaning and groaning,”Noooo, don’t do it!!!”
Change of subject. If you have been following my blog since last July, you know that Stefano (my husband) and I are absolutely mad about puffins (see: http://tinyurl.com/pcgnft). For new readers: in July, we spent one night on Skomer Island (see above link) and, in spite of the horrid rainy chilly weather that soaked and froze us to the bones, we fell completely in love with the place, so much so that we decided to go back in 2010, too. But by the time we called the Welsh Wildlife Centre (last month), much to our chagrin the island was already fully booked for the “puffin” season.
Horrendously disappointed, we started considering other options for our 2010 puffin trip…but I had the idea of asking to be put on a Skomer waiting list…well, what a brilliant idea that turned out to be…
When I got home from Careggi university hospital today, I found an e-mail from the Welsh Wildlife Centre. There had been a cancellation for a twin room on Skomer Island in early July…! I immediately got in touch with Stefano at work, and, well, we booked that twin room on Skomer Island without even looking at flights to the UK, etc. As I told the contact person at the Wildlife Centre: “if necessary, we will walk to Skomer!” Hardiharhar.
This year we will be staying two whole nights on the island, so we should have plenty of time to walk all the way around it and, I hope!, take at least 1,235,000 photos of our darling puffins…oh, and by then we should also be able to get a glimpse of a puffling (=a puffin chick)! I just hope the weather will take pity on us this time…
Well, this has turned out to be a brilliant day. 1. I got a good report from my hematologist, and 2. we are going to spend two nights on Skomer Island…yaaaaaay!!!
As far as I’m concerned, the differences between MGUS & SMM are largely irrelevant. The brilliant thing is that you are stable. There is no way on earth that I would consider a BMB just so I could tell if I was MGUS or SMM. You have to ask yourself how accurate BMBs are anyway. Don’t they just depend on the site of the biopsy? The way I look at it, no gain, no pain.
Margaret, whould a BMB change anything in your treatment? Why do it just out of curiosity? I have only had one – in 2001 – to clinch my diagnosis, and my 2 oncologists have never suggested a second. William
Hope things go better for you this time, Margaret.
Best wishes to you both.
Decisions…decisions! There’s something to be said about KNOWING you’ve taken one giant step away from MM! For an MGUS patient, it must be a comfort knowing that you have that nice little buffer zone (SMM) between you and MM. If I were you, I’d want to know. But, would I want to know badly enough to have a BMB without sedation. Probably not! I’m allergic to pain! : ) I’m thrilled you are doing so well! Keep up the good work! Donna
i had a BMB in 1999 at diagnosis and in Dec. 2008.
In both BMB they found aprox. 20 % Plasmocytom cells.
In 2008 they checked the BMB probe with FISH test – and that will be a usefull test to check if there are any DNA defects (e.g. delq 13, t4-14 ect).
If the Hemoglobin (HB) and Platelets are not out of tolerance it´s not necessary to perform a BMB – that was my way do handle it.