Saturday, December 12, 2009

No More DEX!

YAY! After 23 cycles of pomalidomide (CC-4047, Actimid) with dexamethasone (DEX), I've taken my last DEX tablet, at least for a while. Recently I've only been taking 4 mg per week anyway, which probably doesn't do a lot of good but certainly seems to induce most of the same side effects as a larger dose.

Thursday's results (December 10) again show the myeloma to be stable. M-Spike, IgG, and light chains all about the same as 28 days ago. Stable is good - my myeloma and I are at a standoff. Let's hope that continues without the DEX. More actual test results are listed below and from the righthand panel.

Ashwagandha:

No noticeable improvement, so clearly the ashwagandha isn't helping much. Of course it's possible that the myeloma has begun to figure out the pomalidomide, so M-spike would be higher without the ashwagandha, but I doubt it.

DEX Replacement:

First of all, maybe the DEX doesn't need to be replaced. But I'll see if I can find something that will help the pomalidomide, so that I don't have to go back on DEX. In my own earlier efforts to find a treatment, I had thought that nothing did much good, because M-spike never seemed to go down or even stop climbing. Looking back, though, I can see that IgG did stop climbing for a while, even if M-spike didn't seem to, when I was on my "kitchen sink" regimen, taking low-dose naltrexone (LDN) with curcumin, quercetin, resveratrol, and EGCG. The truth is that M-spike can't actually climb much when IgG is stable, so M-spike was probably more stable than I thought back then. Now, what would happen if I replaced the DEX with the kitchen sink stuff?

Oh, that's right, LDN is a prescription, so I'd need to discuss that with Dr L and I doubt it would be permitted as part of the study. I need a substitute. LDN is thought to work by causing the body to release endorphins which help somehow, possibly just by inducing a very sound sleep. Well, ashwagandha does that too, at least it seems to put me to sleep. So I guess I'll keep taking the ashwagandha at bedtime. Here's the new regimen, to be merged in with the other supplements that I take:

Ashwagandha
225
 
mg
Curcumin
8000
mg
Quercetin
4000
mg

If those don't seem to make a difference after a cycle or two, I may try resveratrol and EGCG next. We'll see. Meantime I have to order more of the supplements. The full updated supplement regimen will be available from a link in the right-hand panel soon.

Wild Alaskan Salmon Oil:

We recently spotted this product on the shelves at Costco in Maplewood, MN: Wild Alaskan Salmon Oil. It is made by a company calling itself Alaska Protein Recovery, LLC, and purports to be (1) Free of mercury and other heavy metal pollutants (because Alaskan waters are low in pollution), (2) from a certified sustainable wild-salmon fishery, and (3) "proud to be made in the USA" (i.e. not from China). Two 1000-mg capsules supply 600 mg of omega fatty acids, including DHA 220 mg and EPA 180 mg. I must admit that I don't know if that is good or not - I haven't studied fish oils. The flax oil that I already take shows different fatty acids on its label, so comparison is difficult. I have been taking two flax oil capsules per day, and will now add two salmon oil capsules. Perhaps by the time I've used up the 180 salmon oil capsules I'll know whether this was a good idea or not.

Some current test results:

Test
  
Sep 17
  
Oct 15
  
Nov 12
  
Dec 10
  
Remarks
M-spike g/dL
0.9
0.9
0.9
0.9
Best tumor measure
IgG mg/dL
1070
1020
1100
1090
Variation is normal
L FLC mg/dL
2.54
2.68
2.61
2.36
L Free light chains
Calcium mg/dL
9.9
10.3
9.8
10.0
Below 10.2 is best
Creat mg/dL
1.1
1.0
1.0
1.1
Kidney, lower is better
HGB g/dL
14.7
15.0
14.4
14.3
Hemoglobin, normal
RBC M/uL
4.08
4.21
4.00
4.00
Red cell count, low
WBC K/uL
4.1
4.2
3.9
3.7
White cells, normal

Related links:

     
My Myeloma
   
A discussion of my myeloma, not very technical.
My Treatment History
Not technical.
My Test Charts
Graphic displays of several key test results over time.
My Test Result Table
Best with a wide browser window. Very "technical."

More ASH reports coming up.

7 comments:

  1. Yay! No more dex is wonderful!

    Let me know if the salmon oil causes any reflux. I've been taking krill oil. So far, so good.

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  2. No more dex is awesome! Congrats!

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  3. Excellent results, Don! So happy for you. :-D
    As for DHA, which is contained in fish oil but not flaxseed oil, on April 9 2009 I wrote a brief post about it, with links, if you want to go have a look.
    That Alaskan oil looks interesting, thanks for mentioning it. I too have bought some salmon oil, different brand though, which I will begin taking soon in lieu of my generic fish oil. We shall see!

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  4. Once again, thanks a million for sharing this. It is tremendously helpful to patients who are a step behind you in progression of treatments. Well written. Well informed. The logic inspires trust in the information. Yours is the only blog "my" patient seems interested in, among all the Google Alerts I get on mm.

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  5. Don-
    Congrats on your stable m-spike and discontinuing dex. I think salmon oil and your other supplements will have anti-mm effects. Here is to a stable m-spike.
    David

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  6. A very good blog! i am a follower.

    ReplyDelete