Thursday, January 28, 2010

Test results in, and the are GOOD!

Hello people.

Getting ready to depart Little Rock. It was a very successful little trip!

First, my test results, furnished rapidly, in detail, and without me having to ask for them.

* Blood:
- White count up to 4.52 (in response to my cold, which is going away with the help of Augmentin, a strong oral antibiotic)
- Hemoglobin is 12.9, a little on the low side but to be expected given the Revlimid
- Platelets at 116, same comment
- RDW is up at 14.4 and the abnormal red cells I noted are due to the Velcade; they are nothing to be concerned about
- Just started tracking CD4 helper T cells which are quite low (expected given the immunosuppressants I am on, this is normal)
- Blood chemistry is all good
- Lipitor is working: Cholesterol is 180, triglycerides 141!

* Cancer markers:
- B2M is 1.3, very good!
- "M protein cannot be detected at the level of sensitivity of serum protein electrophoresis." I.E. No M-spike whatsoever!
- Immunofixation negative: "the original IgG lamba M-protein is not present." First time I've seen this in Arkansas!
- Same results in urine -- no M protein to be found anyplace!

* Bone marrow "negative for plasma cell myeloma"!
- No M component!
- Plasma cells <5%
- Normal morphology with no abnormalities
- This makes four consecutive bone marrow pulls that have all been normal!!

- All previously described focal lesions in spine have deceased in signal intensity and size, no new lesions detected
- In the pelvis, largest focal lesion has decreased to 2cm (this was once 5cm) and other focal lesions have gone away
- No focal lesions in the shoulders any longer
- Decreased focal lesion in the left clavicle (was 1cm, now 5mm)

* Bone density is "excellent."

Sum total of all this: sustained deep remission, bones rapidly healing, precisely what they want to see!

Next steps: another course of Zometa, some testosterone (BB overruling my urologist!), Velcade inceased to 1.3mg per m2, rather than 1, but Dex decrease from 20mg to 12mg! I'll take that tradeoff!

Re: the Velcade, which GD had said "I don't think can be increased," BB said "ridiculous, I give this to little old ladies, we used to do much more than this."

Reducing the dex will help me lose weight, get better sleep, and reduce muscle wasting -- all good.

Some Q&A with BB yielded some funny moments:

* He asked me how I felt. I told him "recent bloodwork shows abormal red blood cell morphology" to which he said "so you walk down the street, grab your side and say "oh sh*t, I am experiencing abormal red blood cell morphology!??? I said 'how do you feel?'" And I had to admit, I feel good, other than the dex making me tired and hungry. He noted that the Velcade "is in the bone marrow stirring sh*t up in there, the marrow is trying to keep up, you're going to have some weird cells as a result but this will pass once you are no longer on Velcade, and it's nothing to worry about in the meantime." He suggested I stop observing myself so closely! :) Probably good advice.

* I told him I wanted to see if I could get any of my height back. He thought this would be a good idea (not just for vanity, but also to ensure spine health, avoid pinched nerves, etc.) so I will have a consult with the expert when I'm here next. He called BJ to set this up and said "Nick van Dyk is interested in extending his extremity.....(long pause)...please call a urologist." :) He then amended this, of course. :)

* We are looking for MRI complete remission as the next step. I asked him if there was anything I should be looking for as a negative indicator. He cut me off. "You will be the first to know. I'm way ahead of you. I see data updated from all my patients every Thursday and I spent hours poring through every number looking for this stuff. I'm more obsessed with your disease even than you are!"

* He gave me an unpublished article from Blood (it will be published soon) that shows the cure signature for Total Therapy 3 dating back to 2003. 55% of newly diagnosed patients. 74% of newly diagnosed low risk patients. 87.6% of newly diagnosed low-risk patients that reach CR (this is my group, thankfully). I have mentioned before that I have the Proliferation Subtype(PR) of the disease, which is an unfavorable indicator. Only 11 of 230 people with the Proliferation Subtype have low-risk disease. It is not the dominant marker for me, but it's still there. And it confers, even in a low-risk setting, a worse outcome (this is in part why he is juicing the Velcade). However, once these patients achieve complete remission, 87% remain in complete remission two years later -- and that is for all patients (including high risk). He was able to show me low-risk patients that achieved complete remission with the PR subtype -- and every since one of them remains in complete remission four years out. In other words, achieving CR overcomes the negative attributes of the PR subtype.

All in all, could not have been a better series of results.

Next steps:

* Another course of Zometa to speed along bone healing
* Velcade up to 1.3mg
* Dex down to 12mg
* Depo-testosterone administered via intramuscular injection, not a pad
* Return visit in May for another PET, full body MRI, another bone marrow, bloodwork, and probably back surgery

We then had a lovely dinner with BJ and BB's wonderful wife Kathy (the good doctor himself was not able to make it as he had dinner with a candidate -- don't know if that meant a prospective patient or a prospective doctor). The warmth and genuine concern of these people is amazing. We are so fortunate to call them friends, and so fortunate that we found this place.

This week we spent a bit of time with WB, whom I spoke with on the phone a few weeks ago at the request of BJ, and WB's lovely wife S. WB is just entering the program, was randomized to the lite arm yesterday, and begins his journey today or tomorrow with induction. I see a lot of the same questions and concerns I had a year ago in him -- and as with my new friend JH (who himself had an outstanding consult here last week, and will be monitored before entering treatment as BB felt he was in no danger at this time) I feel really good to be able to "reach back through time" and talk with people that remind me a lot of where I was at the beginning of my own journey. So WB, if you're reading this, go get em!!! And JH, you've picked the right place, for whenever you decide to proceed.

They are curing people here -- in large percentages. Make no mistake.

Be well, everyone! Graphs will start coming soon, I promise!


  1. Great results, great attitude. I love reading about your battle Nick, you have a good way of wording things. I am so glad things are looking good. You got me researching Total Therapy 3 but no matter how much I peruse the charts, I still have trouble imagining going through all that TWICE! And I remind myself about all the great drugs and STILL can't fathom it. But I'm the chickenshit who didn't have children, mainly because I understood where they come out. ha ha

  2. Great results!
    Is this your first Zometa infusion? If so, a couple words of warning....The first infustion is not pleasant. You can expect flu like symptoms (chills, fever) for a night. But it is short-lived and does not replicate on subsequent infusions. (I have been getting Zometa monthly now for 3 years. After the first dose, it is very benign). Also, ask them to set the infusion slow as to opposed to fast. Shoot for about 45 minutes to an hour. If you go slow, the symptoms will be less intense. After the infusion, drink a LOT of water.

    On Velcade: I tolerated it very well. Some suggestions on avoiding neuropathy: 1) Potassium (eat a banana or a handful of raisins every day) 2) Magnesium supplments 3)B Vitamin supplement.

    On Dex: I envy you dropping to 12 mg. Just warn your wife on the day of and after your dose. You'll feel crabby, bloated, and starving. Essentially, you'll be PMSing.



  3. Thanks for the comments, folks! Ed, I got Zometa once before and was fortunate to have no side-effects from it. So I anticipate no issues with this next course.

    Re: Velcade, I am taking a vitamin B supplement every night that I have Revlimid. I haven't experience any neuropathy and so far, so good.

    Re: Dex, the mood swings are one thing I never got, thankfully. The hunger pangs, weight gain, water retention, muscle wasting, heartburn and scratchy throat are all side-effects that I hope will lessen with the reduced dose, and hopefully I'll sleep better as well.

    All in all, I am very encouraged by where I am and hope to see continued progress in four months. If I can get to MRI complete remission, there will be little else to wait for!

  4. Terrific news! With the
    upratcheting of Velcade, be pro-active about
    the old constipation thing though. The sluggish
    colon kinda corrected itself in Tim after the
    first few Velcade rounds but that extra jolt could "put a cork in it" again and as you know,
    being "full of s---" is much more pleasant when it is only in the figurative sense. ;o)

  5. Really does sound positive. And while we both know how differently everyone responds to all these meds, I do want to share a couple more things....1) I can't emphasize enough how much a difference it makes to take the Zometa slow. Half hour infusion is too fast. Have them titrate it down so you are there for 45 min. to an hour. For me, it makes a great deal of difference. 2) I probably should have asked this yesterday, but I've gotten very mixed feedback from cancer docs regarding the use of antioxidant supplments. Some say it is important to make your cells healthy. Others say that since they are in the business of killing cells, antioxidants are bad since they make the bad cells healthy along with the good ones. I'd be interested in BB's take on this. But overall, they seem to agree that getting antioxidants through food is good, supplements can be iffy. That said, I ran across a study done at USC where they specifically tested the effect of green tea on Velcade and found that it made Velcade less effective. So, I recommend that if you have a craving for Green Tea, go for a glass of wine instead.


  6. Nick,
    I am so very thrilled for you--what wonderful news!! I was wondering if you asked about your "phantom aches" and what BB's thoughts were?
    Enjoy and celebrate your awesome results!!

  7. Awesome news!!! We have more to celebrate on your visit now. Incredible pizza shall be had!!!

    EW... I don't think we have to worry about Nick going for a glass of wine instead of green tea. Something tells me he has that covered. :P


  8. Great News!!!

    Wow..I needed that today..

    Have a drink and enjoy it...

  9. Such awesome news! We must all celebrate next week. See you soon.

  10. Fantastic news - we are thrilled for you!

  11. Yay! Your results aren't just good...they're GREAT! (an obscure homage to Thurl Ravenscroft, just for you Nick.) Keep knocking them outta' the park!


  12. Great post Nick. This had me cracking up: "ridiculous, I give this to little old ladies, we used to do much more than this." I can see BB saying this...

    Keep educating the community that using the Cure word around MM is not an oversight! I am pushing for CR prior to transplant with the RVDD chemo cocktail, but I will definitely be content with hitting it after transplant #1.

    Dude, let me know if you need some help with Excel ;) You could just steal my charts and fill in your data!

  13. Oh...Amen to Tim's Wife comment! We don't need to hear horror stories about being full of sh** from either of us any more!

  14. I am reading this Nick, and I do plan on kicking butt! Speaking of butt, they got me twice today - deep bone marrow and gene array; all followed by my new pal, the man purse! 2 lines, 4 different chemo cocktails. Also started all the orals and have them in the 4 x 7 box you recommended - great idea. Thanks for everything Nick, I truly appreciate your knowledge and your willingness to share with all of us!