Sunday, October 14, 2012

Update - 6 months post transplant

October 2012
February 2012


January 2012 















Sorry it's been so long.  Hope I didn't' get anyone worried. I'm doing fine.  In fact I'm doing more than fine.  I'm doing phenomenally well.  It now been six months since the transplant, and I am in what is Dr. Vescio is calling SCR - Stringent complete remission.  That is a step above complete remission and a step below cured, which is not a viable step yet for myeloma.  My most recent biopsy did not show any active cancer cells.  So as long as things stay that way, I'm home free.  However, I can't be considered cured because whatever caused my cells to mutate could still be part of my constitution and could cause them to mutate again. But Dr. V, who is generally not a "cheerleader" type, did say that my chances are very good, especially since my chromosomes are still testing normal.    So, it's business as usual.  I am working full time, playing tennis, and riding my bike as evidenced above.

As for hair, it all fell out in February, but is now back.  It came back full.  It came back the same color (mostly dark with touches of grey).  And it came back very curly.  The most recent picture is somewhat distorted as I have "helmet hair" from the bike ride.  But it is quite wavy.  I didn't like it much as first, but  - pardon the pun - it's growing on me.

As for post transplant treatment, I am on a maintenance program of Revlimid and prednisone.  The prednisone is very low dose and it does not seem to affect me at all.  It is far more tolerable than the dreaded dexamethsone, which every cancer patent will tell you is nearly as bad as the chemo.  The Revlimid is a pretty serious drug.  It is a derivative of Thalidomide, which you may recall was given to pregnant women in the 1950s to treat nausea, but resulted in serious birth defects and was taken off the market as a result.  It has proven to be a very effective treatment for myeloma and Revlmid is a rather defanged version of Thalidomide   But it does come with a host of potential side effects.  I've been tolerating it very well, with the exception of some hand and foot cramps that are bothersome but not frequent and not by any means horrible.  Retail price for Revlimid is $900 for a 21 day supply.  Thank goodness for good health insurance - my price is $100.

So, overall, I'm doing very well.  By God's grace I'm doing a lot lot better than most people who are afflicted with Myeloma and/or been treated with the transplant.  Some of my fellow travelers still are recuperating 6 months or more post transplant.  Many don't have nearly the outcome that I have been blessed with.

So, at this point, life is good.  I'll try to continue to post periodically, but if you don't hear from me for awhile, please assume it is because I don't have much to say....as opposed to something bad going on.

By the way....I've been featured in my good friend and fellow traveler Pat Killingsworth's blog.  Pat is has fast become the national clearinghouse for all things myeloma.  He asked me to put together a chronicle of my journey  which  I did in five parts.  None of it will be news to any of you who have been following along here for any length of time.  But in case you are interested, here is a link to the final installment.  Chronicle Part 5  You can search on the rest if you care to by typing my name into the search field on Pat's site.



14 comments:

  1. I can't tell you enough how pleased I am with your good health. As for your hair, you so look like daddy which is a good thing. As you know, my prayers thoughts and love are with you all the way.

    Andrea, who isn't feeling well said to tell you that she's very pleased that you feel so well and hopes it continues. She said to send you her love.

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  2. Yah, glad to hear and see that you're doing "phenomenally well"! I hope to catch up again either at the end of the year or the beginning.

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  3. Wow, so glad you're doing well. I was doing great after my SCT as well. But of course as do most ,relapsed eventually. Just wanted to correct that revlimid, is almost $8,000 a month for 25 mg for 21 pills! Crazy , but true.

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    1. I live in Canada and my Revlimid is $11,000.00 for 28 days of 10 mg. My insurance picks up 80% and RevAid arranged to have the other 20% covered by manufacturer...so it costs me nothing thankfully!

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  4. Ed, Congrats on reaching the 6 month milestone. So glad to hear you are doing so well. Keep practicing your tennis - One of these days you'll be able to beat Susan.

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  5. Looking good! Glad you are back doing all the fun stuff. Take
    care......Louella

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  6. Great news Dude!!! I'm very glad to hear this news. I'm watching J.J. Watt
    sack Aaron Rodgers, but the Packers are winning for now.

    Stay well,

    Tommy

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  7. Ed, you look fabulous! I can't believe how fast guys hair seems to grow. Mine is growing in, but so slowly, and not really curly. I, too am in remission and have elected not to start Revlimid until the Myeloma starts to creep back in. I am feeling really good, too. It is a great feeling to really feel like my old self again! So happy to hear you are feeling great!

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  8. Glad to hear things are going so well! So this means you will be feeling great January one when Pattie and I come out to see the Badgers play in the Rose Bowl! It could happen - something none of us believed just a few weeks ago...

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  9. Hi Ed! Your hair now looks a lot like mine....congrats!! Gary

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  10. Hi Ed,

    I just read your recent log….God is amazing!

    So glad you are well and happy. You look great!



    hugs,

    Gail

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  11. Ed,

    Great news!!! And, pretty good blog, you may have found a second calling.

    Elizabeth

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  12. Ed,

    Hello. I was directed to you via a mutual friend (in Princeton right now, I think). Just thought I'd say hi. I'm 39, live in London, and half way through my first treatment for myeloma - Velcade, Doxorubicin and Dex. The plan for me if response is good enough is to delay SCT - so I was very encouraged to hear your story. Good luck and best wishes

    Alex bicknell

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