Michael's Cancer Blog

Retrospective on 2007 allo SCT

This is not as much of an update as it is a retrospective. I was fortunate 
to speak this week to a large neighborhood group that had come together to support 
City of Hope, my oncology center in Duarte, CA.  The thoughts I shared from 
the podium were taken from these notes.

SHOW OF HANDS

Yesterday, Oct. 19, I asked an audience of over 150 people the following:

▶ How many here have a friend, family member, loved one who has or had 
cancer?

▶ How many of you have personally had cancer or now have cancer?

Just as I thought, the percentages are true: One in three persons will be 
touched by cancer; one in four people have had or will get cancer in their 
lifetime.

That observation was followed by a declaration of my support for the group’s 
support of the City of Hope. As I said, “by your presence and support, you 
declare it is also your City of Hope!”

I last visited the Duarte campus about a month ago for an IVIG, an infusion 
of immunoglobulin, an immune system booster that helps fight inflammation 
and infection. I am told that I may need these 4-hour infusions periodically 
for the rest of my life. Now, they come about every three months.

And although the very word “immunoglobulin” sounds like a Halloween 
concoction, there is no masking of my pleasure to have arrived in this place 
along this journey of mine and Dee Dee. At one critical point in our 11+ 
year journey with mantle cell lymphoma (MCL), we had been given a 10% chance 
of survival.

Dee Dee and our two daughters, Suzanne and Andrea, had been invited by our 
COH oncologist and care team to a counseling session prior to our scheduled 
allogeneic (unrelated donor) stem cell transplant (SCT).

By the facial expressions of my doctor as were all seated in a COH classroom 
on that pre-SCT counseling date, I knew that Dr. Nakamura had something 
serious to share.

“Mike,” he said, “due to your repeated trips in and out of remission during 
the 16 months of chemotherapy, our transplant team recommends AGAINST the 
stem cell transplant at this time.”

To which, I asked: “Dr. Nakamura, if you had my medical history and same 
diagnosis, would you proceed with the transplant?”

He replied, “No!”

Then I asked, “If you had a spouse, child, or other loved one in this 
situation, would you recommend the transplant?”

His reply, “Yes.”

My answer was then: Let’s proceed as planned.

And we got the hopeful unrelated donor stem cell transplant (MUD SCT), one 
of the few medical procedures that offer hope of a "cure" for my type of 
MCL. The SCT was completed on August 22, 2007. On the 44th-day 
post-transplant results of a PET scan were negative (cancer was gone!) and 
we also received the DNA test results -- the SCT was successful. The donor’s 
DNA was my own.

Meanwhile, until Nov. 30, 2007, I was restricted to home confinement for the 
first 100 days post-transplant, a routine requirement. Recovery was steady 
but slow with some skin rash (GVH), but on Feb. 25, 2008, I returned to work 
on a part-time basis. We were expecting to be back at work on a full-time 
basis by the one-year anniversary on the transplant, Aug. 22, 2008. That is 
also when we were expecting to learn the identity of our SCT donor which was 
accomplished around that time.

The donor was an "unrelated" 20-something German named Torben C. of 
Göttingen, a university city in Lower Saxony. When we made a connection via 
email and social media, Torben said his interest in stem cell donations 
started when he read a magazine article on the topic.

Fast forward, on October 19, 2017 we are 10+ years post the allogeneic stem 
cell transplant (SCT) and more than 11 years since diagnosis.
During my 2006-2007 treatment and prior to allogeneic SCT in 2007, I had at 
least four bone marrow biopsies without anesthesia, all done by physicians 
and PAs. Painful, yes, but not the worse thing I survived. Also had a spinal 
tap that required a blood patch procedure after to stop a siege of migraine 
headaches. Had two more bone marrow biopsies after the SCT to confirm 
remission then and again when I had a relapse with a single tumor in 2009. 
Yes, I can confirm that this is standard diagnostics. By the way, our spinal 
tap proved negative.

Now that we are in the rarified air of 10+ years survival, Dee Dee, our 
family, and I can look back with gratitude to an unrelated German donor who 
acted upon an invitation that he read in a magazine article.

Today, I have his blood type and his life-giving stem cells. I am in full 
remission. I am alive some ten years longer than was first believed. I have 
enjoyed being a grandfather to two precious children who would not have 
known me, as I was not able to know either of my grandfathers because of 
their demise before or during my early youth.

Thanks to City of Hope and thank you for your support today and for your 
time to listen to my cancer survival story, one or many, and one of hope 
fulfilled.

These thoughts are further amplified and archived in http://canswersite.com
Mike likes this post.
Emsnana, April threw a punch at your cancer.
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Good to hear that you are doing so well. I'm fourteen months post SCT to treat my AML. I am doing well too. It's good to hear about long term survivors who had a transplant.
Thank you, That is a very moving story, demonstrates nicely the grace of giving.
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Thankful for 11+ years since DX

Thankfulness is the byword of the week, but for cancer survivors, every day is a time to be thankful. Personally, in remission since January 2010, following an allogeneic stem cell transplant in August 2007; DX with mantle cell lymphoma (MCL) in April 2006.

 

 

3 people like this post.
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Even though I have been rather inactive on BLOG FOR A CURE since joining in 2008, that inactivity is not due to a lack of interest. Many other things have occupied my time, but I am resolved at year-end and for the new year to be more diligent about posts at this location.
Emsnana likes this comment
I should add that the photo (inset) is a keeper because it was the last taken (circa 2005) just before my chemo experience. So, the full head of hair (even the gray) is now only a distant memory.
I remember you Michael. i joined at the same time. We all had a very robust group at that time, who supported the many who were scared and angry at their diagnosis. Believe it or not I am also surviving and very grateful to see your post here. it's wonderful to have some of the grassroots still here. it gives me hope and that is one very potent ammunition. Sounds like you have had a few major changes in your life. Whatever you wish to share I would love to hear it. Take care and see you around soon I hope. Louise
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Vital Info

Posts

May 31, 2008

CANSWERIST

Corona, California 92883

June 7, 1948

Cancer Info

Non-Hodgkin Lymphoma

Mantle Cell

April 1, 2006

Stage 3B

4.1 - 5.0 cm

Grade 3

Positive

Positive

Yes

Yes

Rituxan

Loss of strength and stamina

Hold on to family, faith, hope

Become a SCT-BMT donor and encourage others to do same

City of Hope (Duarte CA) and City of Hope Medical Group (Pasadena)

January 1, 2010

Sudden appearance one morning of mass (lump) under my right arm.

Had TOMOTHERAPY without any known side affects

Stem cell transplant August 22, 2007.

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