Haematologist appointment

This morning I went to see my haematologist at the Haematology Center of Careggi Hospital in Florence. I hadn’t seen her since February of 2008.

 

One of the first things that she told me, smiling, is that she has begun recommending curcumin to her MGUS patients. And, she added, some of her patients read my blog (and have begun taking curcumin on their own). Well. To say I am thrilled is a huge understatement. Huge. But let’s proceed to what she said about my test results etc.

 

Not so good stuff

 

After examining my July test results (I still haven’t received my November ones), she asked me if I had had any colds, fevers or infections recently. No, I answered, not even a teeny tiny nose drip. I then asked her why she was so surprised to hear that, and she told me that my immune system is very very low (in Italian: Lei ha pochissime difese.).

 

She is concerned about the disappearing act of my good immunoglobulins (my IgMs and IgAs). She told Stefano and me that that is the only sign of possible progression. But this was at the beginning of our visit.

 

Well, I attribute my good health to the anti-viral and antibacterial properties of curcumin and, in part, also to a homeopathic remedy that Sherlock suggested I take last summer, which I believe protected me from getting my usual bout of bronchitis in the fall.

 

Incidentally, Stefano has had a horrible cold in the past few weeks, and I haven’t caught it. So I may have a disappearing immune system, but the little that is left makes the Ninja Turtles look like Turtle Doves (knock on wood! tocca ferro!).

 

Good stuff

 

She looked over my July spinal MRI results and confirmed what I already knew: I have no lesions (at least, not on my spine!). So we can postpone the series of full skeletal x-rays for now. Phew. No bone lesions. No lesions!

 

I asked her if she had obtained any details about my 2005 (=50% neoplastic cells) and 2007 (40% neoplastic cells) BMB samples, and she had. With a big grin on her face, she told me that the result is much better than expected: my 2007 BMB, taken about a year after beginning my curcumin protocol, wasn’t the reported 40% but LESS than that. Less than 40%? I almost hit the ceiling when I heard that bit of news!!!

 

She didn’t give me an exact percentage, though, and for some reason I didn’t think of asking her. I think I was too surprised and excited to think clearly right then. Duuuh! I should write her asking for more details about the BMB (BMB=bone marrow biopsy, by the way) samples at some point. Oh, another good bit of news is that I don’t need another BMB. Not in the near future. I took that as a really good sign, for it’s almost been two years since I had my last one. I hate BMBs with a passion, even though my 2007 one wasn’t as painful as the previous two (OUCH!), thanks to the experienced doctor who performed the procedure. Anyway, no BMB anytime soon. RELIEF!

 

I asked her if I am anaemic, which is a big concern of mine. Flipping again through my test results, she shook her head and said, “no, not at all.” She also told me which results I need to monitor for anaemia. So I will be able to do that on my own from now on. Fantastic! She did join forces with Stefano and insist that I eat more red meat. Okay. Okay. Okay. I will.

 

My monoclonal component has gone up a bit in the past year, which made her frown a bit, but she added that everything else is in such good shape that she isn’t concerned. This slight increase is not a sign of progression, in other words.

 

I told her that I was testing parthenolide now, and she was very interested in that. She told me that if it works, she will publicize my results. By the way, she wants to see my test results, the November 2008 and January 2009 ones, but she doesn’t have to see me again for six months. Yippee. Speaking of parthenolide, she told us that she is presenting a paper at the upcoming ASH Annual Meeting in December, and promised to keep me informed of any news about DMAPT (a week or so ago, looking through the ASH abstracts, I found a paper about DMAPT and myeloma, very exciting indeed).

 

I asked her about nifuroxazide, the oral antibiotic used to treat colitis and diarrhea, which has been found to kill myeloma cells by directly inhibiting STAT3 (see the September 29 2008 issue of “Blood.” I have the full study and will report about it soon on my blog). She knew about the study but had nothing to add. None of her patients are taking it. She seemed a bit ho-hum about it.

 

At the end of our visit, Stefano and I asked her what the verdict was. She answered.

 

STABLE

 

P.S. As I typed that word, “stable,” tears filled my eyes. In fact, I had to stop myself from sobbing. Where the heck does all this emotion come from? Well, I guess a part of me was scared, since my July results aren’t that splendid…but I can relax now. No need to worry. My specialist confirmed that I am stable. That’s cause for celebration, not tears.

 

Oh, one last thing: As we were about to leave, she told me to listen to my body. No kidding. I was a bit surprised, since she is, after all, a conventional specialist. But one who can think outside the box.

 

She has earned my utmost respect.

14 Comments

  1. GREAT Margaret!!! You´ve been working so hard…..you deserve it!!!This is the result of your daily effort.
    Thank you for sharing it with us.
    A big kiss,
    Patricia

  2. Please email me with where you get your curcumin and what dosage you are on. My wife has Ovarian cancer and I want to get her started on curcumin right now. She has finished with multiple rounds of chemo but needs something else going forward as it is not gone. Should I be giving her 8 grams per day, and where do you get yours please email.

    Thank you: (and Happy to see of your good results on most recent test). Allan

  3. Margaret
    Great news ,stable but if you believe in the laws of attraction
    would it be better to believe in complete remission instead of stable,if we become what we think about I choose complete remission or is this
    too simple?

  4. YEA! Congratulations Margaret! Stable is great! I like “remission” better as Joe mentioned above but what the heck, “stable” is good too!

    I received improved results from the labs I took on Monday too! YEA again! I’ve stopped taking LDN, Vitamin B-6, and reduced my intake of sweets (I was on vacation before my previous tests…and I over indulged a bit!), and I think I’m on my way back to stable. Whew! Thank goodness! : )

    If I remember correctly, I think Stefano once gave you some good advice, “Stick with what ya know!” I think I’m going to follow his advice from now on! Thanks Stefano!

  5. Great news Donna. Do you mind telling us how much your light chains have dropped back? I wonder how accurate the Freelite test is. My numbers were fairly constant until last time.
    Paul

  6. Sure thing Paul! My Lambda Light chains went from 976.00 mg/L on October 23rd to 884.40 mg/L November 24th. My Kappa Light chains also dropped from 13.10 to 4.65. That’s a little low for me but it’s still within the normal range. The Kappa/Lambda ratio went from 0.02 to < 0.01. Not a good thing! My total protein also went from 6.3 g/dL to 6.5 g/dL. It almost hit the normal range! Albumin and other miscellaneous regions were normal. The first page of this Immunology Lab report states again, “No obvious monoclonal protein seen on present study.” Blows my mind! I’d love for them never to find any of the little buggers but my numbers say differently. I hope you get an improved report next time too Paul. Take care, Donna

  7. Hi Donna,
    I don’t know if you have seen it but there is a post on the MMA Digest by a lady (Susan Burk) who has non secretary myeloma and whose light chains have doubled recently. I wonder if there is something wrong with the tests?
    Paul

  8. Congrats – what wonderful news!

    I confess that I read your blog often but rarely comment; I’d be embarrassed for you to know how little I understand about this disease. I have no background in science, medicine, chemistry, and very (!) limited aptitude for those subjects.

    All I know from my BMB (which I slept through, thanks to IV sedation) one year ago was it showed 80% of my bone marrow cells were cancerous. I know nothing about monoclonal components or neoplastic cells. Lucky for me, I seem to be recovering in spite of myself, but I’m grateful for all the bigger brains out there learning and working and experimenting.

    Best wishes. xoxo

  9. What a good report! I don’t see much bad news in there at all. I’d like to know how much the monoclonal component (M-spike) changed – as you know that is not a particularly repeatable test.

    You are a light to show the way to us all. Thanks for what you do.

Leave a Reply

Your email address will not be published. Required fields are marked *