My CtrlAltDel - Status

Asher · Post by **Asher** » Fri Jun 17, 2011 9:53 am

So here is the promised status report, but first the facts:

• In day +5 my white cell count dropped to 0.0035, indicating my immune system was practically eradicated
• Day +6 was 0.03
• Day +7 was 4.5
• Day +8 was 35
• And today, day +9 was 130

Professor Dr. Ho, the amazing gentleman who runs the stem cell transplantation ward of the Heidelberg university hospital told me this morning that he expects the count will exceed 1000 in the next 48 hours. Thereafter my new immune system will rapidly recover to normal levels (varies by individual, anywhere between 4000 and 10,000).
Now when you ask an MS patient who is undergoing HSTC to describe how they are doing, one must realize that there are 4 distinct phases.

• Phase 1. Chemo
This is for most people, and thus for me too a relatively benign procedure. Nothing much more than your old (MS) self.

• Phase 2. Two weeks Post transplantation
The transplantation itself is not an exhilarating experience, but it only last 20-30 minutes after which they carefully monitor your hart, blood pressure, and look for allergic reactions. In my case I had a flue like reaction. But this only lasted 30 min. after which I slept for 4 hours. The chemo truck hits most people, and thus me too 2 days post transplantation. Every person experiences this phase of immune deficiency differently. I can only speak for myself: I caught what they call an ‘opportunistic infection’. The doctors believe the neck catheter (used to administer chemo and stem cells) was the culprit. As a result I was running a fever and was on antibiotics. At day 4 I completely lost my appetite, stopped drinking and had a nasty and painful sore on my tong. I think the feature of this phase that will probably leave a lasting impression on me is borrowed from MS terminology: ‘The HSCT blanket’ – fatigue, a sense of detachment from reality, hard to explain, but it like a vampire just sucked life out of you. This was the down side, but the lifting of the blanket once your stem cells get into action and your blood count begin to recover, oh boy. No, I am not a Christian, but today, the first day for lifting my blanket, I am because I now have a profound understanding of the concept of resurrection.

Phase 3. Mth 1 thru 6
I bet I will discharged and on my way back home to my beloved wife and son on Tuesday next week. This marks a complete 3-week stay at the hospital and exactly in line with plan. The first 8 to 12 weeks will be dedicated to restoring this battered body of mine i.e. rest, good nutrition, exercise and worrying only about the things I can do something about. Sounds simple? Give it a try…

Phase 4. Mth 7 thru 24
This is the phase where SPMS patients often start seeing benefits in term of damage repair. I think George and others have described this extensively so I will not attempt to reinvent the wheel. Besides, they have been there, I haven’t.

Final note
At this point my only hope is that this CtrlAltDel procedure will stop the beast from causing more damage. This will become apparent in phase 3. I do not count on any significant damage repair. Should this turn to be the case, I will view this as some sort of celestial gift.

Still I can’t help not sharing with you that for the first time in some 8 years I sweat again. Strange how illness and adversity can help us to rediscover, appreciate and enjoy the ‘smallest’ and the most “trivial’ of things.

shaight · Post by **shaight** » Fri Jun 17, 2011 5:00 pm

wow Asher! thanks for sharing that info.

i'm glad you are doing so well and have made it over the crux. it didn't sound fun, but obviously so worth it.

best of luck moving forward!

Asher · Post by **Asher** » Sat Jun 18, 2011 7:49 am

• In day +5 my white cell count dropped to 0.0035, indicating my immune system was practically eradicated
• Day +6 was 0.03
• Day +7 was 4.5
• Day +8 was 35
• Day +9 was 130
• Day +10 was 340

georgegoss · Post by **georgegoss** » Sat Jun 18, 2011 8:23 am

Hi Asher,

Thank you , thank you, thank you for sharing the blood test results. I was ready to turn blue because I couldn't breath until I heard that you had evidence of engraftment recovery with rising Lueukocyte numbers. I can breath again! (Neutropenia is a bitch.) Your numbers look great and started rising on day +8. That is fanstastic and is the absolute earliest/best possible recovery timeframe that could possibly be hoped for! It is starting to look like your treatment schedule and recovery profile is looking nearly identical to my own (my numbers started rising on day +9).

And its amazing how quickly you feel better now, isn't it?! It all gets better from here on out. Your platelets (thrombocytes) normally start rising a day, or two after the leukocytes. But that is now a certainty because of the rising leukocytes. The mucositis in your mouth will also dissappear almost immediately. Probably by tomorrow or the day after at the latest.

But of course the most important thing. . . . CONGRATULATIONS on your body no longer having underlying MS disease activity! Wiping out your misbehaving lymphocytes with the chemo has seen to that and your new lymphocytes are going to be self-tolerant and be on good bahavior to not attack your own body. After some number of months you will realize and conclude that you no longer have any more MS disease progression and by 12 months you should (likely) conclude that you are seeing real & meaningful symptomatic improvement (by measure of your EDSS) and should continue to improve for some time into the future. The odds are definitely in your favor.

For now just take time to recover from the beating your body has taken from the chemo and rest up well. That'll take several months but at some point in the future you will have forgotten about being sick from the chemo and will have no regrets from the treatment.

Your new "birthday" will forever be known as June 8, 2011. . . .

http://themscure.blogspot.com/2011/06/p ... cohen.html

.

shucks · Post by **shucks** » Sat Jun 18, 2011 9:58 am

Congrats man, and I wish you the best. Did they give you an over/under on when you can return to work?

Asher · Post by **Asher** » Sun Jun 19, 2011 9:02 am

In day +5 my white cell count dropped to 0.0035, indicating my immune system was practically eradicated
• Day +6 was 0.03
• Day +7 was 4.5
• Day +8 was 35
• Day +9 was 130
• Day +10 was 340
• Day +11 blood was drawn and analyzed in the morning. The count was 840. I slept all day long and my count this evening is very likely to be well above 1000. Curious to get tomorrow’s analysis.

georgegoss · Post by **georgegoss** » Sun Jun 19, 2011 12:57 pm

Asher wrote:In day +5 my white cell count dropped to 0.0035, indicating my immune system was practically eradicated
• Day +6 was 0.03
• Day +7 was 4.5
• Day +8 was 35
• Day +9 was 130
• Day +10 was 340
• Day +11 blood was drawn and analyzed in the morning. The count was 840. I slept all day long and my count this evening is very likely to be well above 1000. Curious to get tomorrow’s analysis.

Awesome Asher !! You'll be home with your family soon. Drive safely. Your risk of a car accident is greater than the danger of the HSCT procedure. Remember to diligently use the alcohol hand sanitizer for a few months and take your Bactrim 3 dys a week and the Acyclovir every day for six months. You should be in the clear following your (re) vaccinations at 12 months post-transplant to retrain your body's immune system as to who is the enemy (communicable diseases) that your body has "forgetten" about.

Asher · Post by **Asher** » Tue Jun 21, 2011 10:55 am

Both white and red blood cell counts are surging and with a bit of luck I will be spending the coming weekend at home with my family. They are the source that helped me pull this off. I'll keep you posted.

Lyon · Post by **Lyon** » Tue Jun 21, 2011 12:37 pm

shucks · Post by **shucks** » Thu Jun 23, 2011 5:10 pm

Good luck with the recovery and please keep us posted on your progress. Have you noticed physical revoery from the treatment yet? Is your strenght coming back?

1_sindy · Post by **1_sindy** » Sat Jun 25, 2011 8:50 am

Asher i am so happy you are feeling better and please rest and enjoy your family,it is hard to believe it was almost a year since we met,Gord and i are wishing you all the best.Hugs to the family tell them we are thinking of them.best of luck Buddy xoxo

georgegoss · Post by **georgegoss** » Sun Jun 26, 2011 8:41 pm

I have been communicating with Asher nearly every day during his hospital stay in Heidelberg. I thought I'd provide a very brief update. . . . .

Things have not entirely proceeded in an "ideal" manner. All of his chemo & transplant went precisely as anticipated. However, today (Sunday) he is at day +18 post transplant and he is still in the hospital (I was discharged during my own HSCT procedure at day +13). Some explanation. . . . nearly everyone that undergoes this HSCT experiences an idopathic (cause unknown) fever that is is both common & usual. However, it is not common for the fever to extend beyond the engraftment day that shows rising immune cell counts. Asher had the absolute best possible immune cell count recovery starting on day +8 (my own recovery was day +9) and he was showing initial indications of a fantastic recovery. However, his idiopathic fever continued beyond his engraftment day which is quite unusual. The doctors don't risk the delay to try to identify the potential infection so they quickly transferred him to the ICU where he was pumped full of broad spectrum anti-infective agents to blast any possible infection that he might have had. After two days in ICU they released him back to his normal hospital ward room where he is today. He feels somewhat better but is still not 100% past the fluctuating body temperature levels. A specific infection has not been identified (and he might not even have an infection but instead his body might just be having a undesired reaction to the treatment regimen).

Asher's case is somewhat unusual for an HSCT patient but it highlights an important issue in that the treatment is a serious & complex procedure not to be taken lightly. The procedure should be performed at a proper hospital facility (such as Heidelberg where they are #1 in treatment with HSCT) so that any unexpected or unusual adverse reaction can be addressed immediately and competently. After my telephone discussion with Asher today he is definitely better than this past week and appears to be improving. It is expected that Asher will pull through this fine with little or no unexpected after-effects and is looking forward to hospital release as soon as possible (perhaps sometime later this week? Maybe, I hope.).

But to keep things in perspective, regardless of Asher's current experience, the excellent probability of his underlying MS disease process/progression is very likely completely 100% stopped. I am looking forward to his future report of his (likely) MS symptomatic improvement and that he has regained a better certainty of his (and his family's) future by stopping his MS disease progression.

I will update on Asher's progress when I learn about the next milestone:

http://themscure.blogspot.com/2011/06/p ... cohen.html

Asher, get well soon!!

shaight · Post by **shaight** » Mon Jun 27, 2011 8:02 am

right on Asher! stay possitive...we're all rooting for you!

shucks · Post by **shucks** » Mon Jun 27, 2011 8:08 am

Keep your head up. If you get through this part, it's going to be dolwn hill. We look forward to an update when you feel up to it.

georgegoss · Post by **georgegoss** » Tue Jun 28, 2011 7:57 am

Good news from Asher today. The road ahead of him appears to have smoothed out. In his own words. . . .

. . . . it’s official now, Friday I’m going home! Prof. Ho said that my blood counts, at day +19 are all above a healthy individual's average. I survived last night [without] fever [and] without antibiotics or any other sort of medication. I walked today, cycled and feel like today is the first day of the rest of my (hopefully MS free) life.