What’s next?

Actually, having typed that, I realized it could quickly be misunderstood as a statement of frustration.  That is certainly not the case here.  By “what’s next” I simply mean to provide an update to what seems to be my less frequent postings.  As has been lately the case, I offer apologies to those “avid” followers, again, as there hasn’t been a recent update to my blog.  The days just seem to escape like a poorly monitored, greased swine!  (going for visuals tonight!)

Having taken a long weekend in Boston (at a beautiful home with gorgeous views and company that too frequently tip the bottle), I had my visit at DFCI which was promptly followed by a visit at my ‘new’, New York digs: Mt Sinai (I believe the correct name is the Ruttenberg Cancer Center but I will confirm that in a later post).  Bottom line, my numbers remain where they should be.  IGA is normal, IGG/IGM are low but approaching normal.  WBC, Hemo and Hemato are normal where RBC is just below normal.  TotProtein, Globulin and Calcium levels are all good.  I had no m-spike so DFCI now considers me to be in near CR (complete remission) as well.  Having met w/ Dr Jagannath at Mt Sinai after returning from Boston and DFCI, the following are the changes going forward:

  • we will drop the Revlimid from 25mg down to 15mg, still 21 days on, 7 days off.  I anticipate this being followed through end of this year while dropping to 10mg (21/7) beginning in 2011.
  • we will drop the Dex altogether (yipee!  perhaps this means an end to the c-word?)
  • we will drop the Nortriptylene as well while keeping with the Lyrica at 200mg/day for the time being.  I’m anxious to see where this leaves my feet.
  • we will drop the Accyclovir as that is really utilized in conjunction with the Velcade and unnecessary in my current state.
  • there is still a question with respect to the Zometa – DFCI is recommending once per month where MtS is saying not only is that not recommended but something they would avoid.  Their belief is that this only raises other potential issues due to the compromises it could pose on the bones itself where I have nothing showing any concerns with my bones or lytic lesions that would demonstrate a need for this active a routine.  I’ve not yet done enough research to say either way so I’ll let the two of them chat it out.
  • I’ve also opted to drop out of the other daily meds that I don’t believe are having an impact: alpha lipoic acid, acetyl l-carnitine, etc.

So my daily regimen is essentially Rev for 21 days along with Lyrica (100mg 2x), BabyAspirin, VitC, VitD, VitB12 (500mcgr – highly recommend this one for an energy boost to anyone taking some of these other meds), FlaxseedOil, sennacol (during Rev days) and finally, FishOil (highly recommended from the pill poppers in Boston!)  I now need to get myself to bed at a reasonable time and start getting up and back to my exercises.  I was also chastised for not having exercised, which I hope to correct in the very near future.  But part of that means getting to bed at a reasonable time (did I just say that twice, probably because it’s 23:26 and I should have been in bed hours ago!)

I’ll write more re; where I stand and also post some before/after hair pix.  I also took some pix of my most recent reaction to the Rev.  It wasn’t bad but hopefully someone new to the regimen will have a sense of relief that it’s not long lasting and Zyrtec will take care of it!  Thanks to Beth Morgan for sending me pix of how her eyes reacted to the Rev, I’ll try to think of this as I move forward.  I’ll also put something together re; long term thought process as I’ve spoken to both docs re; that issue and have some sense of what to expect.  But for now, I need to get to bed!

Thanks for reading and I’ll talk w/ everyone soon!

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To Dex With Love

It’s Monday, it’s only 8mg of Dex, it’s currently 23:58 AND I’M WIDE AWAKE.

More important, my flaxseed oil wasn’t as successful as it was last week and I’ve even taken to a full 16oz glass of prune juice at dinner (and still no success).  But I just realized I haven’t even taken my night-time meds and probably need to do that now!  But for those of you awake and bored, I’ve not much to report beyond my lack of sleep.  Should be a wonder at work tomorrow.  Perhaps I’ll get up bright and early and work out (and perhaps I’ll win the lottery as well!)

Good night for now!

The Drugs and What to Expect

One of the recurring themes in my posts is getting caught by surprise when something expected doesn’t go the way you expected!  Specifically, the drugs you’re given and your reactions to them.  I created a page on my site called The Drugs and What to Expect that’s outlined my experiences.  I’m hoping that people just getting into this mess find it useful but I’m also looking for feedback for those that have had other effects.  Being I’m using an “off the shelf” blog template I may not be able to do this effectively but at least I can gauge response and determine if I need to do something differently then.

I’ve not gotten everything in yet but I’ve tried to capture as much as possible and will continue to fill in when able.  Please provide feedback (and in the case of Beth, pictures!) where possible.    Hopefully this will prove helpful to others as well.  Please also indicate dosages as that may be of relevance (dependent upon age, current bloodwork status, etc.)

I’ll leave everyone on a quick tip to combat the C word!  Flaxseed Oil, 10o0mg (or is it mcg)!  It’s been the solution!!!  I am also taking “SennaCot” or similar name, which is a mix of Senna and Colace (50mg).  Two of those as night and the Flaxseed Oil during the day and aside from two days this week I’ve been business as usual! :)

On that note….

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Up In The Air

It was a movie available on my flight – didn’t watch it (though it’s supposed to be great) I stuck w/ Invictus (did you notice my blog name) though the rugby shots weren’t great and the documentary, “The 16th Man” was much better; and the Ricky Gervais movie (city of the dead or something like that).

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Business as usual

With nothing to report I find it difficult to find topics or stories to post on my blog. I feel like I’m getting back to normal. I also find (or at least I believe) that the nortiptylene is also affecting my general capacities (in other words I’m a perfect target for those old blonde jokes).

I still have issues with my feet and hands but by no means is it like it was previously. I’m wearing my regular shoes and just dealing with a dull soreness and numbing at the end of the day and first thing in the morning. I’m not sure when the docs will let me get off the drugs as I feel like I’m getting to normal. I’d like to try without and am hoping I can do this come June.

But all this is really just business as usual. This week my friend fighting AML came down with a 103f temp or over 2 days. They couldn’t find the cause and were going through a series of antibiotics until finally one worked. Apparently he had a strep infection of some sort. Bottom line, it was one of the toughest things he’s been through in his life. It’s also been a time that he’s had to face mortality.

Now everyone knows my blog never really approaches the issue of mortality. Is it because I’m scared? Because I’ve never had to face that issue? Perhaps. But in my eyes, I could spend time worrying about that or spend time in what I believe to be a more productive fashion. I dont believe it’s that I want to face this issue, as I believe I will have to at some point. At that time, I’ll deal with it. Till then, I’m only looking forward. And if I can get off the drugs, perhaps I can do so in a more organized fashion than I’ve been doing lately – and be a bit less blonde-like!

For now, my goal is to get up tomorrow morning, do my pushups, situps and pullups. I want to be able to get a 20 min workout in each morning. From there I want to get out running 2x per week. What finally got me in this mood? First, i’m starting to feel more normal. Second, I’m starting to look fat! ;) But last, and most important, I see what happened to my friend and realize that I can help prevent getting into that position if I get myself into better shape.

So tomorrow it begins.

Wish me luck.

– Posted using BlogPress from my iPhone

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