The big no-no…

I got my test results yesterday. Not great. As you read through this post, please keep in mind that my previous tests (excellent ones, by the way) were taken six months ago, in November 2008. Well, I have learned one very good lesson: never again will I wait that long between tests…okay, here goes…

 

My total protein went from 8,6 to 9,5. It’s been above 9 before, but this is the highest it’s ever been.

 

My IgG jumped from 32,80 to 39,90. Ouch.

 

My M-spike went from 2,33 to 2,68. Double ouch.

 

B2M went from 1,7 to 1,9. Not a big concern, since it’s been that high before.

 

I also have a rather scary vitamin D deficiency. My endocrinologist had told me not to take any vitamin D before this set of tests, so I didn’t. Whoah, though. This particular value turned out super low. I need to speak with her and start on a vitamin D supplement ASAP.

 

As soon as I received my results, I sent them to Sherlock who looked them over and then phoned me. These are a few of her very wise (come al solito!) thoughts: perhaps an ingredient in the feverfew extract that I took for six months might have inhibited the anticancer activity of the curcumin. Aha. That is very possible. And her theory might be confirmed by the fact that my (already high) cholesterol went up a staggering 14 mg/dL, which doesn’t make much sense when you think about it.

 

Another possibility, my good friend told me, is that I may have some sort of latent infection. That would explain my high IgG and also my still high ESR (note: my ESR is less than it was in July 2008, which is good). At any rate, Stefano and I are going to talk this over with my family doctor on Monday to see what can and should be done.

 

Let me add that the news was not all bad. For instance, I am definitely not anaemic. My haemoglobin, red and white blood cell count etc. are all fine. My ferritin is up to 13, back in the normal range, yay, and my serum iron continues to be fine. And my other markers have remained more or less the same, for instance my creatinine is still at 0,7, perfectly normal.

 

Let’s see. Now we get to the “big no-no.”

 

Of course we always want our markers to be stable or even better than stable, so any increase is a disappointment if not outright frightening. But I thought I had taken the news quite well…there were no signs of what would happen later on…when Stefano got home from work, that is.

 

I began, “I have something to tell you…,” and then, to my utter surprise and horror, I felt tears welling up in my eyes. Oh no. Not now. I tried to hold them back and managed to continue, “I got my results…and…they…are…really…bbbad…!!!” Then, phoosh!, the deluge…

 

Oh no…my poor husband! Through my tears, I could see the alarmed look on his face, so I managed somehow to reassure him…that he shouldn’t worry, that I was still stable but some of my markers had increased a bit. Phew, relief! This leads me to make the following obvious point:

 

If you ever have some disappointing or worrisome news to break to your caregiver, please try NOT to cry! Not a good idea…mark my words!

 

Well, I obviously have some pondering to do in the next few weeks. In the meantime, I have decided to stick exclusively with what works (no more experimenting!), that is, my daily dose of curcumin/bioperine, quercetin/bromelain and purified fish oil. E basta!

 

Another decision: I won’t fret about these results but will enjoy my summer. No more tests until the fall. And, bloody hell, no more tears!…unless, of course, prompted by a fabulous BBC drama series!

18 Comments

  1. Margaret,

    So sorry to hear that your results were not so good…but I have had the experience (several times) of getting bad results one time, and the next time the results are much improved (sometimes better than ever). There seems to be no logic to it – but I know it to be true. Also, I think that the idea of a latent infection may be a real possibility, or possible the feverfew…

    As for the crying, it seems that putting bad news into words somehow intensifies the feelings. It happened to me also just today: we had to put our beloved dog (14 yrs old) to sleep. I thought I was handling it fairly well until I had to tell our (adult) children. Then the tears really started to flow. Still trying to cope.

    Let’s hope for a better day tomorrow…and keep our chins up!

  2. Margaret,
    I’m not as experienced as you are in this whole journey, but I have learned that the worst times are when we get home from the hospital/appointments and the very next day. It seems like even the average news and new treatments loom large and overwhelm us. Van is worn out physically and we are both worn out emotionally. I’m learning not to write the Care Page (blog for friends of the patient) until I’mve had some time to recoup.

    That said, I bet your hubby was glad to be there for you and go through the roller coaster emotions with you. The only thing worse than having myeloma would be having no support system.

    Hope your numbers right themselves by your next appointment.

  3. Margaret, I am always a wreck after I get my blood test results and see how much worse the CLL is. Even though I was feeling great , healthy, full of energy the second before I read the results, I immediately am at death’s bed the second after. So I really understand how you feel. And I am with Lisa too, your results will get better next time! What a roller coaster our lives are! Celeste

  4. Yes, at least 20 minutes in the sun (before 10 am and after 2 pm) will help the vitamin D deficiency immensely. No sun block!

  5. Margaret,

    Sorry about these negative results but I have absolutely no doubt this is just a minor setback – ultimately, you will beat this thing!

    I believe the vitamin D deficiency must play some part in the bad results. I personally try to prevent an AML relapse and not only do I avoid a vitamin D deficiency but I actually have a vitamin D3 intake close the maximum tolerated by the body.

    Some empricial findings which may be of interest both for leukemia as well as MM:

    1988 Shanghai Report on childhood leukemia: cod liver oil containing omega3 fish oil, vitamin A and VITAMIN D.
    Taken over 1 year: 70% less risk. both for AML and ALL
    ————–
    T. T. T. Timonen: Between 1972 and 1986, 300 consecutive patients aged over 16 years and diagnosed as having Acute Leukemia were enrolled.
    Tendency for leukemia incidence to increase in the dark season.
    Hypothesized that sunlight deprivation in the arctic winter can lead to a deficiency of VITAMIN D3, which might stimulate leukemic cell proliferation and block cell differentiation
    ————–
    2007 Timo Timonen, Simo Näyhä, Tapani Koskela, Eero Pukkala
    Are sunlight deprivation and influenza epidemics associated with the onset of acute leukemia?
    Month of diagnosis of 7,423 cases of acute leukemia in Finland during 1964–2003 were linked with data on influenza and solar radiation.
    There is a seasonal variation of both the 25(OH)- and 1,25(OH)2-D3 vitamin serum concentrations.
    Strongest finding: Acute myeloblastic leukemia (AML) showed the highest risk in the dark season.
    During the light season, the incidence decreased by 58% (95% confidence interval, 16–79%) per 1,000 kJ/m2/d increase of solar radiation.
    Reoccurring at the same time annually, darkness-related VITAMIN D deficiency and influenza could cause successive and co-operative mutations leading to AL with a short latency.
    —————
    also remember the self-study published on your blog where disease development was reversed only with: IP6 Inositol 1.5 g/day, Inositol 2 g/day, Selenium 200 mcg/day, Vitamin C 500 mg/day, VITAMIN D 1000 iu/day, a Multivitamin/Multimineral per day

    All the best!

    Benjamin

  6. Hi Margaret

    Keep your chin up, even the positive clinical studies show movements up and down, however it is scarey, I’ve had almost the same experience, all my results were stable until Feburary, then suddenly at the begining of May they jumped upward, higher than I have ever had, WBC and RBC low. I am also going back to well tested supplements of the past. I am waiting for results of tests done last week to see if things have improved. My Hubby also got the full waterworks, but I think it’s good to let go once in a while. My ESR was also way up and my Doctor suggested I may have an infection my immune system wasn’t responding to.

    Anyway I have picked up again since recently finding this, I have been using it for the last week. Have a look, “This system extends this principle by stimulating our healing potential through the written word, numbers, fractal equations, sound, colour, and symbols”. it is free to download.

    http://www.quantumk.co.uk/quantumk_about.htm

    Sue

  7. Hi Margaret,
    I was very sorry to read about your latest results. However, I think you might have stumbled on something with vit D. I have never had my vit D tested but my best IgG results ever were after I had spent 5 weeks here in Oz 3 years ago. I think if you spend some time sunbathing in the garden this summer, there is a good chance that the relaxation and vit D will bring your levels back down again.
    Take care,
    Paul

  8. Two more things:
    Doesn’t feverfew get rid of cancer stem cells by causing them to differentiate – could that be the reason for your high protein markers?
    Secondly, I had a leg infection recently. My ESR went up to over 50 and my platelet count was over 600. Within a couple of weeks the ESR was down to 13 and the platelets had declined too.
    Our makers can change a lot and, as you have said, it could be you were carrying an infection and your results will be back to normal next time.
    Have a great time on Skokholm.
    Paul
    PS A belated happy birthday to Stephano. Tell him I’ve photographed kangaroos on the beach, black cockatoos, and wild platypus.

  9. Another thought on th eVit D, it’s interesting that most of the times my levels have gone up it has been towards the end of winter before the English sun has got strong enough to have any real impact on levels, I noticed this several years ago and had my levels tested, they were really low, I couldn’t persaude the doctor to test them, so I had it done privately, once I had proof they were low and I needed in my doctors eyes supplementing they are now regulary testing me to make sure I don’t over supplement, although I have now worked out that if I have a garenteed sun holiday at the end of August and then lightly supplement through winter I can keep my levels up, This winter however I discided that due to cost and as my levels were in the high range of normal I would not supplement!!! My results I am waiting for will tell me my vit D levels now, but I think it plays a part in how well we are.

    Paul may be right of course about the Feverfew, if you think about a healing crisis, you feel worse before you then get better.

    Love and health

    Sue

  10. Margaret:

    I’m glad Paul posted that if the feverfew got rid of the stem cells that it might cause the markers to go up. I thought I remembered reading that study about feverfew and any other drugs that get rid of stem cells (causing the markers to go up temporarily). When you wrote this news and that feverfew might have played a part, that was the first thing I thought.

    But I don’t have good enough recall to match what I read with the details and am glad that Paul did. I don’t know how one would find that out; if it were killing off the stem cells, that is.

    I’m also with the one who says cry more tears for toxic release. Wonderful that you were able to do that with someone you so totally trusted.

    Thank you for your communication to us all for our knowledge and support. I hope we sometimes are able to repay your kind efforts here.
    Linda B.

  11. That’s what we husbands are for, Margaret. Do you for one
    moment think you could hide your feelings from him? My guess
    is that he realised something was amiss before you
    uttered a word.
    I have been married for 58 years; my wife can read me like a
    book, and I can read her like a book. It would be a failed
    marriage if we couldn’t.
    Weeping washes away worry.

    It’s all in the Good Book:

    “To everything there is a season … …
    ” … a time to weep and a time to laugh … ”

    Ecclesiastes 3:1 & 4.

    best Wishes good friend,
    Old Bill.

    p.s. There are some who have no shoulder to cry on.

  12. Hi Margaret,
    It’s always been my philosophy to look on the bright side. So here we go! Your B2M, Creatinine, and Ferritin levels are normal! Hey Hey! Now, doesn’t that have a nice ring to it? Your total protein is not so very much over the top! “We” can work on that this summer. My M-Spike is higher than yours and I’m still kicking! Feel pretty darn good as a matter of fact! : ) Low Vitamin D levels can be remedied easily! (I understand Vitamin D3 is good for preventing flu too.) It sounds like your other CBC levels are right on! You only have a couple of “not so good” things to work on. Are you feeling a little more cheery now? Hang in there friend! We are sending warm and happy vibes your way! Have a fun summer!

  13. Hi Margaret,
    Last weekend I was a little sad. Anniversary of my father (84 years old!), but for the first time without my mother. My blood was good, but I think this was worse after the death of my mother. Stress and grief have apparently influence. I told my wife that I might not have so many years, according to the statistics. But let it be good years, she said.
    It is good to occasionally crying together. Now I would like to learn more living in the present, not worry about tomorrow (not so easy). Like the Dalai Lama, I focus on a quiet spirit (with a little help from turmeric thanks to your research)

    Hans

    are you going tot take EGCG?

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