This page is a continuation of the previous posting of my trip this past week to Heidelberg to visit Asher Cohen currently undergoing the same HSCT procedure for his own MS. While visiting Asher in his room the morning prior to his stem cell infusion, Prof. Ho (Heidelberg stem cell transplantation department head) came by, making his usual hospital patient in-room visits with the usual entourage of other staff doctors to personally check on the status of each patient. I had a chance to once again re-connect with Prof. Ho and Prof. Egerer when we met up in Asher's room. You may recall from one of my previous blog postings that Prof. Ho and I have somewhat of an indirect connection. He was previously head of the stem cell / bone marrow transplantation center at the University of California at San Diego (UCSD), my home town and alma mater. It was so great to see him again and great to catch up with he and Prof. Egerer (both remarkably wonderful doctors) pictured together here in this photo (click to enlarge):
I was happy to share with them that the HSCT treatment they provided to me was a complete success, 100% stopping my underlying MS disease activity and letting them know that since being treated my disability status has improved by 40%. Something otherwise absolutely impossible to achieve with any other therapy of any kind anywhere. (Admittedly each individual case result may be different.) I congratulated the good doctors on their "buy-in" and support of treating (and curing) MS patients such as myself of underlying MS disease activity via HSCT. They have my undying respect and eternal gratitude!
I also had to chance to stop by the stem cell transplantation coordinator office of Dr. Ulrike Klein to say hello and have a brief chat. Dr. Klein has replaced Dr. Thalheimer who was promoted to another position within the hospital (I'm sorry that I didn't have an opportunity to say hello to Dr. Thalheimer. Such a very nice man.) I find Dr. Klein an especially helpful person and I'm certain her conscientious attention to detail will help make the application process for those with MS seeking HSCT treaatment as smooth as possible.
Here is Dr. Klein as pictured from the hospital website (sorry I didn't get my own picture).
She confirmed with me that she is the main point contact for anyone with MS that would like to apply for HSCT treatment. She will then coordinate with other departments (mainly neurology for approval and the international business office for financial arrangements) to move the applicant through the approval and planning process as I describe in an earlier blog post:
If anyone with MS is interested in actually receiving the treatment in Heidelberg (I have absolutely no financial interest in this), then I would suggest to contact Heidelberg University Hospital directly. I originally worked with Dr. Markus Thalheimer, as he was the transplantation coordinator at that time. However, he has since moved on to a new position within the hospital and Dr. Ulrike Klein has now taken over this coordination role. So she will be the necessary person to contact. Her e-mail address as follows:Ulrike.Klein2@med.uni-heidelberg.de
This is an e-mail response she has recently provided to another person seeking HSCT treatment for MS:
Due to changes in responsibilities I'm getting in contact with you instead of Dr. Thalheimer. In the future I will coordinate the process. In cooperation with our neurologist we will carefully check your medical status. Therefore the neurologist asked us to request the following information from you:
- to fill out the attached questionnaire
- to send us a CD with an actual MRI and
- the latest physician's letter [medical history record] from your neurologist with information about [your current] therapy, especially the current medication.
Following that we will review the documents and decide about the indication for ABSCT [HSCT].
Please send the documents to the following address:Universitätsklinikum Heidelberg
Medizinische Klinik V
Dr. Ulrike Klein
Im Neuenheimer Feld 410
69120 Heidelberg, Germany
All financial procedures will be coordinated through our International Office once the medical questions have been clarified.If you have further questions, do not hesitate to contact me (firstname.lastname@example.org)
Sincerely U. KleinThis is Dr. Klein's hospital website info near the bottom of this page:http://www.klinikum.uni-heidelberg.de/Koordination-und-Verwaltung.119960.0.html
While I was walking the hallways I also bumped into Dr. Storch-Hagenlocher, the neurologist that initially examined me 18 months prior, as she was the person that was tasked to approve me for HSCT treatment in Heidelberg. I think you might recall from an earlier blog posting that since I was the first MS patient in recent memory (at that time) to seek HSCT in Heidelberg, they had no formal procedure or criteria in place to approve or disapprove me for the transplantation. So when I first met with Dr. Storch-Hagenlocher the meeting was rather terse in that she got right to the point and clearly expressed her opinion that she thought the procedure to be completely experimental and that I should instead try alternate FDA-approved drug therapies. I disagreed with her position that HSCT is not "entirely" experimental. . . especially now that more than 600 people with MS worldwide have undergone HSCT and the procedure as a treatment for MS is currently in final phase III clinical trial. The overwhelming majority of HSCT-treated MS patients have shown consistent enduring positive curative results. Currently there is no drug therapy available anywhere in the world that has even a remote possibility of achieving what HSCT is capable of accomplishing nor achieving what has already been demonstrated in the clinical trials. I definitely walked out of that initial meeting 18 months ago understanding her opinion that she did not favor the idea of HSCT for treatment of MS. An opinion which appears to me to be consistent with nearly every other neurologist in the world (which is understandable since neurologists are not trained nor experienced in stem cell transplantation and are usually not educated as immunologists and hematologists are regarding the curative effects of HSCT on hematologically-rooted autoimmune disorders such as MS).
Now 18 months post-transplantation during this brief discussion in the hallway I had the opportunity to share with Dr. Storch-Hagenlocher that the HSCT worked fabulously well for me as my MS disease activity & progression is not only completely 100% stopped (and I no longer take any MS drugs), but also that my physical disability (as measured by EDSS) has improved 40% due to the procedure! A result that is impossible to achieve with any other therapy available today, especially for an SPMS case such as my own. As I spoke with her she looked relatively unmoved by my comments, maintaining a dispassionate demeanor while politely listening to what I had to say. (In truth, a little bit I had to resist the urge to say "I told you so!" But of course I wouldn't be so rude to do that.)
In the end Dr. Storch-Hagenlocher didn't stop my treatment, allowing me to proceed with HSCT. Everything worked out with my transplantation as well, or better than I had hoped and dreamed. For that I and my family sincerely thank you Dr. Storch-Hagenlocher. My life today is better by a huge margin that words alone cannot describe because you allowed me to receive HSCT. In this situation everyone was a winner. Thank you again.
I didn't have time to snap a photo of her so here is her stock photo from the Hospital website (click to enlarge).
A big highlight of the hands-on treatment I had while hospitalized 18 months ago was having Dr. McClanahan as the main treating physician (there were other good doctors, too) in the Ackermann Ward. Dr. McClanahan is such a superb doctor and wonderful person that it would be impossible to say anything at all negative about her. She has recently accepted a rather prestigious position at a hospital facility in London which specializes in oncology treatment. Her last day working in Heidelberg will be at the end of this month (June, 2011). I was fortunate to meet up with her and her husband to wish her the best of luck and good success in her new endeavor (although I think London is getting the better end of the deal). Picture here of Dr. McClanahan and her fantastically nice husband Eric. (Click to enlarge):
And then the following day I had an opportunity meet with Sandra Kraeker in the Hospital cafeteria. You might remember Sandra as the main medical technician that performed the bulk of my apheresis stem cell collection procedure (together with Frau Renate and Dr. Hundemer). It was great to catch up on all that has transpired since my last time in Heidelberg. (Click to enlarge):
In the course of meeting with Sandra, we walked down to the apheresis unit to see who else was around. Previously Dr. Hundemer had run the unit but has since transitioned out of stem cell collection and will be assuming a new role in the hospital. However, I was happy to see the familiar face of Dr. Heilig that has now taken over responsibility for the apheresis stem cell collection unit, pictured here (click to enlarge):
Dr. Heilig was previously a regular physician in the Ackermann ward and I saw him nearly every day during my stay there. In fact, he was the physician that inserted my very final cannula catheter into my hand (for IV infusions) during my hospital stay. I had so many needles poked into my forearms during my hospital stay that near the end of my stay I absolutely dreaded having them inserted because it was somewhat painful (which is normal). But the last one that Dr. Heilig inserted was completely painless because he took such good care to do it so carefully. This may seem like a small and simple thing, but even to this day I have not forgotten! So in addition to Dr. Heilig's great medical & technical capabilities, he is also a wonderfully caring clinician. Thank you so much Dr. Heilig. Any future MS patient undergoing HSCT will be very happy to receive care in your department. Beers on me next time I visit!
And it was also great to see frau Renate (the world's top #1 experienced peripheral blood stem cell (PBSC) collection professional!). Photo of the current apheresis clan. Anyone would be lucky to be treated by this group. (Click to enlarge):
Later that same day I did have a chance to bump in to Dr. Hundemer in the hallway of the Ackermann ward. Unfortunately it was only a brief chat and I was unable to capture a picture. Here is his stock hospital photo from the website. I never forget that smiling face. Great doctor and great guy. (Click to enlarge):
And while I was waiting to meet Dr. Klein, I also had the good fortune to bump into these two fine doctors. Pictured on the right is Dr. Raab that was my attending physician at the time of my treatment. (He is the one that mapped out my entire BEAM protocol treatment schedule.) Pictured on the left is Dr. Neben that I first met during my own HSCT 18 months ago. Dr. Neben is currently the attending physician for Asher Cohen now undergoing the same procedure that I had. Both are exceptionally good doctors with the finest experienced credentials. I wonder if they fully comprehend that in addition to often saving lives of people with cancer, they have made history by treating MS patients "outside" of a clinical trial? I'm sure that over time the world will reveal to them the profound appreciation they both deserve. (Click to enlarge):
Pictured in the following photo is Dr. Emilian Snarski. Yes he looks like quite a young man. But his youthful appearance beguiles his true accomplishments and capabilities. He and I hooked up some time ago after he read my blog following my initial treatment. He was working in the Medical University of Warsaw (top #1 facility in all of Poland) doing fascinating & groundbreaking work in treatment and curative therapy of the autoimmune disease of type I diabetes. He has since accepted a position in Dr. Ho's stem cell transplantation group working together with Prof Dreger in the allogeneic stem cell transplantation ward. His recently-new position in Heidelberg allowed us the opportunity to finally meet face-to-face. Both a very capable medical professional and an exceptionally nice person, I personally would love to see him become more involved (in a substantial way) in the use of HSCT for the treatment of MS (and perhaps other autoimmune diseases, as well). [Note added May, 2012: Dr. Snarski has since left Heidelberg and returned to Poland where he currently manages an allogenic donor stem cell operation in Warsaw. I am really looking forward to meeting with him again in the future either in Poland, or here in California the next time he makes it through the area.] (Click to enlarge):
Here is Dr. Snarski's own blog that I find interesting, relevant and very well written!:
Probably the most important "professional" meting I had in Heidelberg was with the distinguished Prof. Platten that heads up the Hospital Neurology department. He was kind enough to take an hour out of his busy schedule to sit down with me so that I could understand his thinking about the basic inclusion/exclusion criteria for those MS patients seeking HSCT in Heidelberg as curative therapy. This is a critically important topic because Prof. Platten is the gate-keeper and key approving decision-maker for any MS patient seeking HSCT treatment in Heidelberg. If you have MS and want to receive HSCT in Heidelberg, you have to make it past Prof. Platten first.
Prof. Platten is not just your run-of-the-mill neurologist (the type of doctors that usually just immediately dismiss HSCT treatment for MS out of ignorance). He has a deep academic and clinical background that includes neuro-radiology and neuro-oncology. This makes his perspective of the treatment more broad and diverse. Generally a good attribute. Although he and I likely don't agree on 100% of every point on this topic of HSCT for MS, I found his thinking & approach to HSCT for MS as basically logical and rational. Critical items in my book necessary for the gatekeeper of this treatment to have. This will make a huge difference to people that are/will seek this treatment in Heidelberg which you can learn about in the next posting I publish. (Click to enlarge):
And here is Prof. Platten's info on this hospital web page:
OK. . . last item that I have been dying to get in. . . . . the last time I was in Heidelberg I didn't have a lot of time to see or do much in the way of enjoyable outside tourist activities (even though I enjoyed the inside hospital activities). While I was hospitalized both Yuko and I had contact with Gabriele and Thomas, good regionally-local German friends of my extended (cousins) family. We had not previously met them but they followed my blog daily as I progressed through every step of the treatment and they sent very friendly & uplifting e-mail messages that were VERY helpful in lifting my spirits while I felt ill from the chemotherapy. In the end they even offered to drive us to the Frankfurt airport. They are such wonderful people!
So for this trip at the end I had the opportunity to go to Mainz and stay with them for a couple days before leaving to return to California. It was so enjoyable to spend time together with them. And they were sooooo nice to take me on a boat cruise down the Rhine river to see all the old historic castles of the area. We also had dinner together at one of the most historically celebrated castles in the region that is more than one thousand years old! Yuko & Riki and I can't wait until we next get together, either in Germany again or in the Bay Area in California. These are true friends for life! Thomas and Gabriele pictured here in Mainz. (Click to enlarge):