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Thank's George for good wishes, I wish all the best to you and you family. I just now saw that in your blog you mentioned Dr. Karussis, my greetings and appreciation to him. He probably does not remember me, but it was Prof. Slavin and him who discussed my condition at Hadassah, and came to the conclusion that maybe Novantrone is the reason for my MRI not showing signs of new lesions. Isn't this a small world!
Posted: Mon Feb 28, 2011 6:31 am
by Looking88
Thank you Packo. One thing you did not mention is the price of the treatment in Isreal. Could you please fill us in on that count? I understand it is 100 to 150K in Chicago.
Thanks,
Looking88
Posted: Mon Feb 28, 2011 7:22 am
by georgegoss
georgegoss wrote:
Looking88 wrote:Thank you. Do you think it would be possible to get the less aggressive Lymphoablative treatment in Germany (or elsewhere?)?
I just received a message from a very nice fellow MS'er reading my blog, and he had this relevant info that I was not previously aware of to add. I understand the cost for the procedure is approximately $75,000. Close to the 55,000 Euros I paid for my own procedure in Germany. . . . .
Hi George.
My name is [redacted] and I just now discovered your blog. I come from [redacted] and have (had?) MS. My compliments on your blog, everything is so precise and informing. It brings back memories on many sleepless nights that I spent on the internet, trying to find the solution that doctors were not able to find. It is nice to read about the people who just like me once decided to take things in their own hands.
In late 2006, I underwent a non-myeloablative HSCT, which is, as you explained, a lot les toxic and carries much less risk, with apparently the same outcome. The procedure was preformed at Hadassah clinic in Jerusalem, under the supervision of Prof. Shimon Slavin. I received my stem cells back on Christmas - talking about coincidence!? [I was also treated during the same time of year.] Ever since [the treatment I have had] no new symptoms of my MS, I am drug free, and some things with respectct to my condition have improved immensely, for example my strength.
Take care of you self, I am sure that this battle is yours!
Best regards
I think price listed in my previous post.
Posted: Mon Feb 28, 2011 10:52 am
by packo
I told George that the price of the procedure alone was 75000$, but yesterday I checked my old mails and data - the price was exactly 77000$
Posted: Mon Feb 28, 2011 12:22 pm
by Looking88
You are correct. The price was right there.
Thank you.
Looking88
Posted: Thu Apr 28, 2011 2:53 pm
by packo
Today I visited my neurologist just for a control check-up. It appears that my EDSS (when we take into account that due to the fracture my left leg is 3cm shorter so this adds to my disability, but directly has nothing to do with MS) right now is 4.0, and prior to transplant was 6,6.5.
One additional information about the protocol I received at Hadassah, the non-myeloablative regimen included fludarabine (30mg/m2 ) intravenously (i.v.) once daily for four consecutive days from day -6 to day -3, cyclophosphamide (50mg/m2) i.v. once daily for two consecutive days from day -5 to day -4 and Campath (0.25mg/kg) i.v. once daily for two consecutive days from day -2 to day -1.
Posted: Thu Apr 28, 2011 3:27 pm
by georgegoss
packo wrote:Today I visited my neurologist just for a control check-up. It appears that my EDSS (when we take into account that due to the fracture my left leg is 3cm shorter so this adds to my disability, but directly has nothing to do with MS) right now is 4.0, and prior to transplant was 6,6.5.
One additional information about the protocol I received at Hadassah, the non-myeloablative regimen included fludarabine (30mg/m2 ) intravenously (i.v.) once daily for four consecutive days from day -6 to day -3, cyclophosphamide (50mg/m2) i.v. once daily for two consecutive days from day -5 to day -4 and Campath (0.25mg/kg) i.v. once daily for two consecutive days from day -2 to day -1.
Awesome news on the EDSS improvement Packo. Congrats! I always love hearing about people's improving (MS) health.
My own EDSS started (pre-transplant) at 3.5 and now (16 months post-transplant) I'm a solid EDSS 2.0. Mathematically that's a 42% improvement for me. And for you its nearly a 40% improvement. Very similar magnitude effect.
And thanks for the detail on the chemical protocol. I think both Fludarabine and Campath are good pairing with the Cyclophosphamide. All are strongly lymphoablative (which should be the target), and less myeloablative (allowing for a more prompt recovery timeframe).
Again, great to hear about your improving health. And good luck & best wishes for a quick recovery with the leg fracture.
Posted: Fri Apr 29, 2011 3:47 am
by packo
Thank's George once again, Iam also glad that you are doing well. By the way, my neurologist has a very positive opinion about Campath and its perspective in treating MS.
Posted: Fri Apr 29, 2011 8:17 am
by georgegoss
packo wrote:Thank's George once again, Iam also glad that you are doing well. By the way, my neurologist has a very positive opinion about Campath and its perspective in treating MS.
Just for interest. . . . .although I don't personally have any experience with Campath, here's what Dr. Burt had to say about it (monotherapy) relative to your own (multi-drug) non-myeloablative stem cell transplant. . . . .
Posted: Sat May 14, 2011 5:57 pm
by shucks
how did you guys manage to pay for the treatment? I have been planning on trying to afford cssvi treatment, which would be a real stretch, but this seem purely unattainable at 10 times as much. I guess I could sell my house and maybe afford it. I wonder how others afford this treatment.
Posted: Sat May 14, 2011 7:09 pm
by georgegoss
shucks wrote:how did you guys manage to pay for the treatment? I have been planning on trying to afford cssvi treatment, which would be a real stretch, but this seem purely unattainable at 10 times as much. I guess I could sell my house and maybe afford it. I wonder how others afford this treatment.
I originally asked myself "how much is a cure for my MS worth to me?" The answer I came up with for myself was "more than money." So I did whatever necessary to afford the only curative treatment available today for MS.
Just my own opinion, but I think a cure at ten times the cost is much more valuable as compared to no cure at 1/10th the cost, which is just a waste of any amount of money. . . .
Once the phase III clinical trials currently in-progress are completed, then HSCT will become FDA-approved. I'm looking forward to insurance covering the cost of the procedure at that time (probably around, or just after, 2020), which is inevitable. It's just very unfortunate anyone currently seeking the treatment today must pay for it 100% out-of-pocket.
Posted: Sat May 14, 2011 7:21 pm
by shucks
I'm not questioning your methods, just trying to figure out your plan so I can see if it would work for me.
Thanks
Posted: Sat May 14, 2011 7:40 pm
by georgegoss
shucks wrote:I'm not questioning your methods, just trying to figure out your plan so I can see if it would work for me.
Thanks
Very valid and legitimate question for any individual to evaluate. No question HSCT is (unfortunately) very expensive. There's no denying that. One thing I also factored in my thinking is that once the progression and underlying disease activity is stopped, it's no longer necessary to take any expensive immuno-modulator drugs. If one were to look at return-on-investment (ROI) over time, you could likely expect to calculate drug saving over time following HSCT. (For my own personal situation I stopped taking Avonex following my HSCT which saves me a bundle every year on medication that I no longer take or have to pay for. That's approximately a 5 year ROI. . . . As far as I know virtually all other HSCT-treated patients are in the same situation where they can discontinue all their MS medication. Additionally, I LOVE no longer injecting interferon, never mind the cost!)
And as a side note that was important for me. . . . 100% of the treatment and much of the associated (travel + housing) cost is tax deductible in the United States. Yeah!
BTW. . . here is a graph I created of the expected likelyhood (probability) of HSCT curative results based on the clinical trial population results. . . .
The young have no notion of risk and so they actieve the impossible, generation after generation.
Inspired by George Goss, I'm in the mobilization phase now and scheduled for chemotheradpy followed by stem cell transplantation in Heidelberg Germany.
Yes, it is a lot of money, but... what would you do if your child needed a life saving procedure? I bet it would no longer be a Q. of if, but of how. And I bet you, you would find a way.
Some are fortunate enough to have accumulated some wealth before MS struck them. Whether it is money, real estate, art, what ever. Just sell it! You can't enjoy pretty much anything while you worry about the meltdown of your body and dignity.
If you do not possess earthly riches, understand why people give. People give and help because we all have a deep need to feel we are doing the right thing and support our sense or self esteem. So the act of receiving is actually an act of generosity. Allow people to help. Be grateful, but you do not need to feel guilty. Mobilize the whole world around you. Ask for help. Family, friends, your church or synagogue, your past colleagues, any one. Wish you strengthsh and wisdom.
Posted: Sun May 15, 2011 5:40 am
by shucks
I am a 30 year old prosecutor on a 50k income, with a new house, a girlfriend, a dog, and 75k in student loans. My house is appraised at 70 or so k more than I paid for it, but It is my dream home. I have inly had symptoms for the last 6 months, but they are steadily progressing faster than I can even get fully diagnosed and bet on any medication. The first neuro I saw said very nonchalantly that I had "classic RR MS he thought" but I'm going for a second opinion next week at Duke. Numbness and clumsiness are creeping up my legs into my chest. It has me baffled and worried Sh**less. I guess I could get a santa suit and set up in from of walmart with a bell for the next few years.
I really appreciate all of you guys advice. keep it coming.
