Thursday, March 20, 2008

(still) no evidence of disease

On the eve of the seventh month anniversary of my second and hopefully, last stem cell transplant I'm happy to report that the PET scan which I received on Monday came back clean. There's no evidence of disease. Alli told me that the scan did show that the glass-like coating on my lungs remains but as before, they aren't concerned. In addition, the blood test that I took prior to the scan came back positive for the Epstein-Barr Virus (EBV), which as you may recall I dealt with in the immediate weeks following the transplant, but she stressed that Dr. Castro-Malaspina isn't worried. It may just be an anomaly.

She went on to tell me that the strength of my immunity, as Dr. Castro-Malaspina had hinted, is within the normal range. At my last appointment, Dr. Castro-Malaspina brought up the subject of reimmunization but didn't give any specific date or time line so I was surprised in my conversation with Alli today when she told me that he had placed an order for some vaccinations (which ones I don't know) on April 7th, my next appointment. Come again? So soon? Wow. I was really surprised by this. She also mentioned that he'll probably start to taper down my Tacrolimus dosage, which stands at 2.5 mL right now and discontinue the aerosolized pentamidine treatments.

Wearing a surgical mask, she reminded me, is no longer necessary though I confessed to her that at least up until our conversation I had been timid about abandoning the masks just yet. But her assurance emboldened me, so when I went out late this afternoon to do photography I exited my building for the first time in seven months without wearing a mask.

My skin still itches a lot and the rashes on my shoulders and chest are still there. I expressed my interest in perhaps seeing the dermatologist again, but I was told to wait until Dr. Castro-Malaspina examines it at my next appointment. On Monday, I'll be back at Sloan-Kettering for another CBC.

I went back through my 2006 blog entries when I had my autologous stem cell transplant and realized that with tomorrow marking seven months post-allo transplant with still no evidence of disease, that will make one more month of remission this around than in 2006 when after 6 months there was evidence that the lymphoma had returned.

*BTW, at the LLS conference that I attended on March 4th one of the specialists there, Dr. Andrew D. Zelenetz of Sloan-Kettering, made a point to the audience that the name Hodgkin's Disease is antiquated. Hodgkin's Lymphoma is the more accurate name. I admit that I, probably like many survivors of this disease, used HD for the most part just out of habit really but after hearing Dr. Zelenetz's statement, I have adopted the proper designation and will refer it as such in this blog.

Oh and yes, Happy Vernal Equinox everyone! Spring is here and the flowers are budding!


Comment Blogger Miss Melanoma said...

Awesome news, friend! I am so celebrating for you right here in Texas. Here's to your health!

3:51 AM  
Comment Blogger Bekah said...


The flowers are certainly budding, my love!

EXCELLENT NEWS. If I had tears in me, I'd let them cry out in front of you for happiness...

Go out and celebrate with what you can, I know you will.

I'm hoping we'll be able to have a drink in June Someway, Somehow in NY or MA.

One more month of remission, I believe makes a huge difference us on emotionally and physically.

Here is to you, dearest!
Surviving the ultimate fight, and continuing on it, everyday....

TONS of my LOVE,


8:28 AM  
Comment Anonymous EFG said...

Congrats on 7 months------
such good news
thinking of you today

9:13 AM  
Comment Blogger One Mother with Cancer said...

That is such wonderful news... I'll keep you in my prayers.

12:00 PM  
Comment Blogger Veronica said...

Hey Duane - yes, Spring is here and it's snowing in Scotland :0p

You know how happy I am to hear your news, it's amazing my friend - you give others hope who face the decision to go for an allo-transplant or not........your attitude towards this whole journey is amazing - love to you as always and roll on June - I'll email you possible dates for meeting up!..............xx

3:06 PM  
Comment Blogger Kevin said...

yeah! glad to hear the good news!

4:36 PM  
Comment Blogger Heather said...

Excellent news!!! I am so happy for you! I pray that this good news will last forever...

4:56 PM  
Comment Blogger Michelle J said...

Duane, terrific news my friend! So, sans mask maybe some coffee in the city somewhere cool and nice and interesting? Whatcha think? No pressure, just think about it and let me know!!!

6:34 PM  
Comment Blogger Jim Anderson said...

Congrats!Let the good news roll. Maybe now without the mask, you wont attract so much attention taking your photographs. Photography is NOT a crime! Ran across another celebrity transplant survivor. Carlos Boozer, a Utah Jazz basketball star, has a 2 year old son who recently had a sct to treat sickle cell anemia. They used cord blood for the sct.

6:55 PM  
Comment Anonymous Anonymous said...

Great news Duane!!! I can certainly understand why it would be hard to take the mask off after so long. Congratulations :)

7:10 PM  
Comment Blogger Duane said...

Thank you everyone for your warm, thoughtful, and encouraging show of support! You guys rock!

Thanks for continuing to show such interest in this journey of mine in which all of you have become such a big part. :)

7:37 PM  
Comment Anonymous Anonymous said...

Duane - So glad to hear the great news! Here's to a CURE!
Erin & Zach

9:57 PM  
Comment Anonymous Anonymous said...


I'm so glad to hear all is still well. I keep my fingers crossed and think of you often.

Keep taking care of yourself! Way to go!

--Sarah formerly up the street

12:29 AM  
Comment Blogger Tom (dB) said...

wonderful news Duane,

keep positive and strong. You are doing so well.

5:07 AM  
Comment Anonymous Anonymous said...

Hi Duane, I started writing you a reply email to your lovely response but it got to be labyrinthine so I saved it as a draft and will send it sometime next week. for now, just wanted to say how delightful for you and for your 'peeps', in fact for all of us that you are still NED (is that a photo of you guys celebrating?)!!! Keep shining your light, Duane; we all feel it!
Take Good Care, Dina

8:57 PM  

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