HiCy tomorrow (Thursday)
 

Hello everyone,

Just wanted to drop a quick note to say hello...and goodbye for now. Tomorrow I enter the hospital to start the HiCy (Revimmune) treatment. I am both excited and totally scared out of my mind. Not afraid of death (especially as there have been none with this treatment thus far) - just the whole idea of this process is mind-blowing. Then again, this whole MS thing has been rather mind-numbing to say the least.

In preparation for my upcoming hair loss, I had my hair cut short. Way short. However, the short is temporary, as baldness will soon follow. I bet at that point I will surely miss the short haircut! :eek: I do have a lovely wig though :cool:

Tomorrow morning I go to the hospital to have my central line (Hickman line) put in and then I get admitted.....and the first dose will be around 9-10pm........

So if anyone has any good/positive thoughts to send out toward Baltimore tomorrow - please feel free to do so!! I'll take all I can get (yeah, I'm being greedy with this one :p)

Hope everyone is doing well and continuing to fight the good fight (whatever the heck that means). I am the 26th person with MS to go through this process of HiCy at Hopkins...and I believe the most recently diagnosed. Hopefully the docs will continue to learn more about how to keep improving this treatment until it is a cure (or another cure comes around).

~Keri

Good luck Keri.

If you get a chance or have access, keep us posted on what you are up to! We'd all love to know how you are doing. If you want to have a point of contact, PM me or someone an email address or phone number. I can pass information along to other members.

:hug:

Keri, I wish you all the best, you will be in my thoughts. Let us know, when you can, how your doing. :hug:

Keri, I'll be keeping you in my prayers for sure.

You have such courage to get your hair cut and buy a wig in preparation for this treatment. I hope and pray everything goes smoothly for you. :hug:

Keep us posted, K?

Extra positive thoughts for Keri in Baltimore!:)

good luck I see you did decide to go through with it congrats and hope its helpful, godspeed on your return to us bald or not

Big {{{hugs ))) for you! I wish you success and a great regenerated immune system!!

Keri, good luck with the treatment! I will definitely keep you in my thoughts. I bet you will be beautiful bald! :hug:

Hey Keri- You'll be fine and in 3 months it will seem like MS wasn't even real.

I do suggest you go bald bald all the way by Day 10. I tried to do what you did and when the hair comes out it gets in everything! It was like a barbers chair all the time. I made it one day and cut it all off!

Congrads your MS is just a couple of days away from being gone!!

Good Luck KERI Prayers are with you. :hug::hug:

Jappy

Keri
Sending positive thoughts and prayers your way. Thanks for your courage. Please keep us posted.

:hug:'s

WooHoo...Good Luck Keri. I hope Chris is even close to right.

My Thoughts and......

http://byfiles.storage.live.com/y1pb...3teidd_yRQjoRU

LOL

Chris is 100% right....why won't anyone but my doctors and those getting this done believe me?

LOL

:hug::hug::hug:
You are in my thoughts....and I'm sending good vibes your way....:hug::hug::hug:

Sending you good thoughts and prayers. I hope it will be a success.

I saw your videos, Chris and from what I observed, you still have the sx of MS. You are, most deffinately doing better, but the MS is still there, isn't it?

I hope and pray that you keep getting better and better and prove all of us wonderers, wrong..:)

No that is what I am trying to tell you all lol I HAD MS I HAD MS I HAD MS...past tense lol!

I have damage that is now repairing. The lesions are healing, the EDSS is going down, all my cognitive tests have improved, all my fatigue is gone.

The brain has to compensate to learn how to do things the wrong way. When you see my video's you are watching in essence a toddler. No one recovers from MS with out learning how to live again. It is not something you are going to wake up one day and say "I can move like I did when I was 20!" I spent 4 years of shoving bad info into my brain and I need to rebuild muscles, and retrain connections how to do it again. I work out 5 days a week on my legs and upper body, do PT 2-3 times per week, and do occupational therapy 7 days a week. Recovering from MS is hard work.

Guys Johns Hopkins has it figured out. I will probably be back to close to normal again within a couple of years. It just depends on how much axonal death I have.

Once the body stops attacking itself it can repair the myelin damage. It can't repair dead nerves. There is a limit to how good I will get...maybe.

Best thing is I do not have active MS anymore. It's gone. It may reactivate in 5-10 years but I will take the neurological function this restores for me. The I will go do it again if I reactivate. It's comparable to the flu for 3 days.

The whole reason I am on Copaxone now is because in Mice with healthy immune systems, if they take Copaxone first, they cannot give the mice MS. It seems to act like a vaccine. In half of the people who did HiCy they would reactivate in 2 -4 years. Now with the healthy immune system we take it for the next year to retrain our immune system not to reactivate again. It has become the norm for all of us doing this now.

I kid you not folks...I feel really strongly I need to worry more about what gas prices will be like in 2 years than what my health will be.

This will be the new norm for MS and 79 other autoimmune diseases within the next 2 years. I just decided to get it done now because insurance is already covering it. I decided waiting to see how much worse I could end up rather than ending the disease was not the right thing to do for me.

www.chrishadms.com

I think I get it now, Chris....Thanks and good luck to you, for a total recovery. :)

It seems, like every other Therapy, that it's best to do this early in the game....before there is to much permanent nerve damage. I guess it's too late for me..Huh! :(

I pray Red has the same results as You have had.:)

The only way it is too late for anyone is for that person to say it is too late. There are people who have had this anywhere from 5-15 years doing this. I just don't think anyone with it longer has tried yet.

How about 44 years..:eek: If I were a bit younger and know what I know now, I wouln't hesitate to try your therapy..:)

If you had cancer wouldn't you do chemo?

Yes, but now, you're talking life and death....

I've lived pretty well with MS over the years. Mine didn't get aggressive until my 50s and now I'm at a platteau and not doing so bad for a senior citizen..:)

This isn't life or death though. There is a better chance of dying from Avonex than there is of HiCy. Avonex has close to a 1% morbidity rate but that may have declined in the past few years.

They have been using Cyclophosphamide since the 50's and Hi Dose Cyclophosphamide since the 70's. The one person who died, died from Aplastic Anemia and it was because of a secondary infection because of a bronchioscope the person had unrelated to the treatment. If the person would have waited like they were told it never would have happened.

I just think after 44 years you at least owe it to yourself to see if you qualify to finally be rid of this disease. Like I said, the treatment is no worse than the flu but unlike the shots this actually works.

You're pushing a little too hard, Chris..:rolleyes:..Are you also an invester?

I invested before I ever took the drug. I own 100 shares ad you can see what ABPI is worth.

Pushing no. The only difference between me and your doctor is if he said go do it you would.

It is your choice ultimately if you want to see if you could benefit. All I do is provide the bike, ultimately people have to ride it themselves.

Then if they can't ride the bike they at least know they did all they could do to beat this crap.

Hi Keri :)! I hope all is going well for you! Please let us know how you're doing as soon as you're able. :hug::hug: I REALLY want to know more about this treatment. I've been reading up on it but I can't find anything that talks about criteria for this treatment, such as what testing is required before being accepted, etc.

Good luck:D:D!

http://finance.yahoo.com/q?s=abpi

100 shares? That's it? At that price, if you are so supportive of the company, why not own 10,000? Just wondering (Stock player here too).

I unfortunately am on disability. I wish I had 10k to drop lol!!

I hear ya...

I had to raid my funds last winter and have few $'s to play now. Funny how things change overnight. Great price though if this works. Could be a real money maker. I'll put it on my watch list :)

I found this and I would call it, a must read for anyone interested in the HiCy treatment.

Long, but so interesting......

http://www.hopkinsmedicine.org/hmn/W08/feature1.cfm

Hi Keri -- Good luck with your treatment. I will be thinking about you. I guess you must have finished the chemo already?? Check back and let us know how you are doing.
Hugs, Natalie :)

If her first day was Thursday her last day will be today. Then we wait for her neutrophils to hit 0. When she hits 0 she will begin the Filgrastim. Around 3-5 days.

She may be one of those that doesn't get sick but the headache I had was bad and I got sick.

I wouldn't expect to hear anything from her until Mon or Tues. The chemo is accumulative so the further in you go, the worse you feel.

Keri-

Hang in kiddo...your already getting better!

revimmune
 

how did u make out with your revimmune trial
my wife is considering it
any improvement in vision or gait?

thanks

good luck with your tx.
i hope it helps and you feel better. :hug:

Good luck! we are praying for you :hug:

A friend recently went to Rush in Chicago for HyCy. Here is a link to her blog for those interested. http://www.latemstunnel.blogspot.com/

I have been on a gram of Cytoxan IV weekly since July and it has helped tremendously to peel back the symptoms of progression that came about after a nasty long term infection. I actually feel better after each infusion than I ever did while on Avonex or Rebif or IVSM or IVIg. It is chemotherapy and does have risks but it seems to be working for me. We are keeping my white count between 2.0 and 2.5. Above 3.0 I have bladder, bowel, vision and spastisity problems and cognition and emotions run rampant in a not so great way. My doc said that having MS for almost 25 years with no treatment then starting to address the issue several years ago might have something to do with how well I am responding. It's been 35 years now with MS and I am grateful we have treatment choices.

Do any PPMSers have any experience or is it for RR?

I don't believe there are any studies using this for PPMS. I have not seen anything on it for MS other than relapsing forms.