Thursday, February 09, 2006

Numbers Dropping and Spirits Rising

This past 11 months have been such a roller coaster that we are naturally quite guarded in receiving any news. Good news has been rare and unfortunately temporary. We are ever mindful of there being no cure for this nasty disease but always hopeful for a turn towards greater control over the propogation of bad cells or even a push into remission. With that in mind we happily received Dr. Rifkin's report today that my IGG numbers have moved downward since we started the velcade. The IGG is "the enemy" in Rifkin's words. My numbers had been rising just before going on the velcade--they went from 2840 in late December to 3220 by January 9th, just before we started the trial. They have now dropped back down to 2850, as of Monday, Feb. 6th. Definitely a move in the right direction and seen by Rifkin and my study coordinator as a good response to the velcade, particularly in light of my having only received 4 shots as of the testing. Our whole family is relieved and guardedly hopeful. The failure of the transplant was so difficult to hear and then the apprehension of waiting for these tests results was quite unnerving. I just didn't feel prepared to deal with a nonresponse or worse yet, continued rising of the numbers. This has been such a mental struggle and even a bit of good news can carry my attitude a long way towards hope and recovery. So, today is a good day and we are ever hopeful that we will establish a long trend toward normal numbers and remission. I know, because I can feel it, that so many of you are waiting for this news and that we are in your thoughts and prayers today. Susan, Catherine, Julia and I are so very grateful that you are all in our lives and for all of your support. It feels like we are encircled by a wall of friendship that protects, prays and supports us. It is a very nice feeling. Thank you once again to all of our friends. We will get through this.

Incidentally, the vitamin regime has had a very positive effect on my neuropathy, having reduced the frequency as well as the severity of the shooting pains. Is it time for the herbs? Do I even want to start that debate again? Never mind, I think I'll just stick with the velcade for awhile.

So, I got my second velcade shot today for this cycle and will get 2 more next week, then a week off--thank god. They'll do more IGG blood work the morning I start my 3rd cycle--which will be in 2 1/2 weeks. I should finish the first regime of 4 cycles sometime in late March/early April. Then another bone marrow biopsy and a decision whether to undergo another 3 month cycle of velcade. That's all for now. In light of today's news, I feel much better prepared to deal with the side effects these next weeks. As always, Love, Dan

14 comments:

Molly said...

I'm so happy to hear the good news! I hope the numbers continue to fall!

Brother Ted said...

I am cheered by the numbers, I am cheered by the tone of your latest posting. I can't even begin to imagine what a disease like this does inside ones head. I can only begin to imagine the feeling of joy you felt when you heard the numbers and received the positive encouragement from Dr. Rifkin. As always we will walk this path with you and we all celebrate your progress.

sigunjoe said...

Dear Dan,

What a relief, what a relief!! Bravo. I feel that you can breath again for a while. I checked the blog the minute I got home last night from Accueil at the Cathedral, but had to wait until this morning to read the good news. Will call during the week-end.Bises, Sigun.

Arlene said...

Dear "Herb",

Very good news!! Hope your side effects are mild. Have a good & relaxing weekend.

We had plans to go to dinner tomorrown night at The Turning Point, a jazz club in Piermont to listen to The Todd Wolfe Band.

But, we decided we would much rather stay home and enjoy the Noreaster that is due to hit tomorrow afternoon. What fun!

Winter is finally about to hit us , this second week of February. Not bad, but the older I get the more I like the sunny, warm weather.

Anyway, enough of us. Be well - all of you. I'll talk to you over the weekend.

Love you all lots,

Arlene

sigunjoe said...

Dear Dan,
It's time to break out the old Gershwin hit, 'Swonderful, 'smarvelous, 'sawful nice, 's paradise, 's what we want to see...
We are thankful for this very positive turn, and we will clink a toast to your health this very night.
Love to all,
Joe

Howie said...

Fuzz,

So glad to hear the good news. Like everyone here, we'll celebrate a little bit and remain hopeful this is just the start. Ah, hell.. We'll celebrate a lot, I don't think I know how to celebrate just a little.
Keep it up!!!!

Lynne said...

HOORAY!

Ingrid said...

Here I am again, after two month I had the wonderful opportunity to see Dan again today.
Now for all of the bloggers who live long away, like Sigun or Arlene, let me tell you, Dan looks sooooooooooooo much better than he did in December.
Update on the Velcade:
It takes all his power out of him. It is much stronger than we are able to read here on the blog. He is kind of tired and weak and his emotions are stroooooooong..

He still fears a lot of what will happen in the future and I hope we all can help him in seeing his future lasting loooooooooooong dealing with a chronic disease.

The falling numbers are just the best, yes all of us were waiting to read that, so let's encourage him to continue this Velcade as strong as it is, it seems to be a pretty good solution.

Love,
I

Dorothy said...

Good Morning Dan. Great news and as always the bloggers wait for the news of your journey! It is amazing how we now look for the things that are really important to put our days into a better perspective. None of us can even come close to imaging that roller coaster ride that the Patterson family has been on for the past months. We are off today to see Dr. Doolittle and dinner somewhere downtown. We will raise a glass of wine and continue to think positive thoughts for all of you. Love to you, Susan, Catherine and Julia. The Seals

Arlene said...

Dear Ingrid,

Thanks so much for the "visual" update. I really appreciate it. We have not been with Dan and Susan since last February when they were in NYC with us. That was just before we all started meeting so regularly on this Blogspot! I miss them so much.

Today we are waiting for the storm ("Noreaster") to start. They described it on the weather report just a short while ago, and it brought me back some 45 years when Susan, her brother and I would weather these storms right off the Hudson and throw ourselves into the snowdrifts which were so above our heads. (always leaving one person out in case one of us needed to be pulled out.j

The wind would howl up the street for hours on end, and we would stay outside - well into the night - enjoying every minute of the storm (knowing full well that we were sleeping in the next day - no school!) It created such beauty, and we could go right to the river's edge and take it all in the next day. There were always huge pieces of ice from the Icebreaker coming down the river (the Hudson froze over in those days.

Suz, - if I go outside right now, I can smell the storm coming.

Ok, enough history. Talk to you soon.

Ar

Shawn and Jaike said...

Dan,
Wonderful news!! So good to hear you with your spirits high and hopeful. Happy too that your side effects are easing if only a little. Hang tought Big Dog.
Love,
Shawn

sigunjoe said...

Dear Dan,

I tried to send you a blog this morning, but they had some kind of a problem. So here I will try again.

I believe that your second Velcade cycle is over today, right? What a relief it must be for you. Now you have a quiet week ahead of you during which you can recoup. How did it treat you this time? Were the side effects as bad, or were they milder? Do you still take your daily walks?? We took a 2-hour long walk this afternoon to an area I did not know: to the right of the Cimetiere du Montparnasse, down the rue d'Alesia (a quartier of very uninteresting rather modern buildings -- I would never want to live there!) which changes eventually into the rue de la Convention -- a nicer area with beautiful old buildings. There are still so many areas in Paris I have to explore! It is typical Feb/Mar wheather here: grey skies which turn at times into bright blue skies for a few hours, very windy and not too cold. Bises, Sigun.

Patty Nelms said...

Hey Dan,
Just dropping in to check on you and say hello. Hope you are staying warm! Our boiler went kaput just in time for the frigid weather and we're still waiting for the completion of the new one's installation . . . all to the tune of $12,000! Good thing I didn't buy those new shoes:)
Just to make things interesting, throw in a houseguest for a week and call it good!

Eager to hear from you and catch up on the latest. Take care.
Love P

Sailor Hawkins said...

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Love, Sailor