My HiCy update!
 

Hi everyone,

Just wanted to update you...

I am day 11 post-chemo and today I was discharged from the outpatient part of the treatment... Tomorrow (Friday), they remove the catheter (hickman line) and I fly home on Saturday morning.

This process of HiCy has been really smooth for me. I think this is slightly atypical - though even those who have gotten sick and had some problems end up doing just fine as well. However, I still am in shock that I actually had chemo. It seems so unreal that I wasn't sick for a day - and yet, I had 4 days of inpatient high dose chemo. Weird. My hair is (finally) starting to fall out (when I run my hands through it, it comes out in small bits). I am sure any morning now, I will wake up and big clumps will be coming out.

Anyhow, just wanted to let everyone know how it went.

Now I wait and see how the MS (and I) respond.

:)

~Keri

Wow, Keri, is your new immune system starting to build? Keep us informed and thanks.

Happy you are coming home..:hug:

It is so good to hear from you!! I am so glad you are doing so well. That was so fast. I thought you had to stay in reverse isolation for 2 weeks after chemo tx, but perhaps your numbers are good enough now.

It is amazing to me how quickly this all happened for you and how well you are doing.

I bet you can't wait to get home and sleep in your own bed!! Have a safe trip and thanks for keeping us updated.

This therapy is something I would consider in the future.

Thanks for the update Keri. I am so glad that something has finally gone right for you.

I find all this interesting and look forward to all your updates and information.

I can't believe it's over so soon. And I'm glad to hear you are doing so well and heading home soon. I'll continue the positive vibes and prayers too. I so want the nasty MS to be gone for you. Keep feeling better.

:hug:'s

I'm so happy for you Keri :). I'm keeping my fingers crossed for you. I would seriously consider HiCy if I could afford to. Hopefully more doctors will start to do this treatment so it would be more accessible. Did ya get some cool wigs yet?? Personally, I would just go with the bald look. It's so hot out right now I'd shave my head if dh wouldn't have a fit :D.

I'm glad to hear that you're doing so well and feeling so well. I really look forward to reading all of your posts about the HiCy process. I keep wanting to call it HiC, like the juice drink!

Your willingness to share your information and the process with us is so helpful and fascinating to me. I am always interested in hearing about how people do with any treatment, especially a new one like this.

I hope you get home safely and enjoy the time back in your own surroundings.

Hugs,
Weebs :hug:

Keri - I'm glad you came through the chemo so nicely - now you can concentrate on getting a better immune system going. Keep us posted. Good for you!

Thank you so much everyone.

I'm home and relaxing. Okay, that's all I've done for weeks now - relax! I did manage to "escape" today - I went to the grocery store and video store late in the afternoon. A friend took me and I wore my mask and hat (I have almost no hair - I need to shave the rest now)....and I pointed to what I wanted and she took it off the shelf for me - so I didn't touch anything.

Well, now that my hair is definitely near gone, I am certain I did indeed have chemotherapy. Still can't "believe" it. Today I'm tired - but of course, that is probably because I went to sleep at 2:30am last night and was up at 4:15 so we could head to the airport at 5am...then flew for 5 hours. LOL. Okay, I guess that would make anyone tired, chemo or MS besides the point.

I was outside for a few brief moments today and it was quite hot today - and my vision didn't go out. This is a good thing, as before I left for the chemo, when I went outside in the heat, I'd go "blind" within a few minutes...but not today. Yippy. I notice some other small changes and it's nice. For instance, one of my MS symptoms was that I like never went to the bathroom - really, I'd pee in the morning, then before I knew it, it would be 9pm and I hadn't gone all day. I drink a lot of water during the day, so it's not from lack of intake. However, for the last week or so - I have been going several times during the day.

I met at least 7 people with MS having HiCy while I was at Hopkins. It's quite incredible really.

I will keep everyone posted.....but for now I wait and see :)

~Keri

When I thought tumor during the DX period and might have to shave my head, a friend joked that now I could get that whole head tattoo I always wanted. You too Keri!! Seriously, love reading your story, hope things keep getting better.

Hi there, I feel so remiss, as I'll have to read what your treatment has been for, forgive me ok?

BUT what a dynamite attitude you have~! We're here for you no matter what. I bet you found ways to cover your head or try wigs etc. or are you just going ala bald?? Whichever, I am glad your chemo has not gotten the best of you. Remember you were resting resting which conserves your energy. Now you are up doing things.

PLEASE keep us posted, it means a lot to hear from you. I responded only after SEEing your name and remembering it stood out!!

Sending you healing, serene loving thoughts..

Warmly Jan

Hi Keri,

I'm glad you're back home in Cali. It sounds like you made it through with flying colors -- at least for the first and most important part!! I will keep my fingers crossed for you! -- sounds like the vision is already a bit better. Yeah!! :)

Natalie

Jan - I had HiCy/Revimmune to treat the MS.

Natalie - yes, came through with flying colors and then some.

Thank you everyone for reading my updates....

Kicker - that's funny. I don't think I could do a tattoo!

I am officially fully bald. Not liking it so much...but small price to pay to be from MS. The actual treatment was so not difficult........I can hardly believe it. As I mentioned, my experience was probably atypical - but I'd still recommend this to people.

Will keep everyone posted....

~Keri

After her chemo for Cancer, my SIL and I went shopping for a wig - she got red. But for her it was too itchy and she never wore it. But she was an art teacher (and all that implies) and loved all her hats, which she had plenty of. No, she did not commit to a tattoo. RedPenguin, I see your name and always read your post. Thanks for blazing a trail for so many,

Keri,

I'm so hopeful and excited for you. I hope you'll get great results from this treatment. :hug:

when I lost my hair due to chemo, I had a wig, but it was soooo itchy! i never wore it. I prefered the IN YOUR FACE, yes I have no hair kinda stuff. Sunscreen on your head is sooo important.

its awesome when it grows back all baby fine and soft! fuzzy wuzzy.

YOU ROCK! :hug:

Glad to read that you made it home and have seen some teensy changes for the better already.

I pray that it all continues to go well for you.

Looking forward to the rest of your story,
Weebs

Keri

How are you doing? I see that you've not updated us lately. I just checked one of the other forums you post on and you've not updated there either! Maybe that means you are doing very well and are very busy!! :D

I spoke to my neurologist on Friday about this procedure and she has an entire file on it. She doesn't think it is for me but at least she is knowledgeable about it!

I hope you are doing well!

How wonderful that you did this and have such a great attitude. Your a brave person and we all are rooting for your complete recovery. Hope your doing well and all is OK! :hug:

Hi everyone,

I'm still around - and read the boards daily. I guess I haven't updated because...I dunno...didn't want to flood the boards with the HiCy stuff....not everyone seemed as open-armed about it, I guess.

Anyhow, I'm doing quite well. I have noticed definite symptom relief on a few things...and I hope they are permanent.

I was getting worse EVERY day for 6 months....and so far, now I've had almost a month not only without getting worse - but also feeling better every day!

When I would read people's blogs about their HiCy experiences, most reported immediate relief from some things....and I was more than skeptical, to be honest. I was thinking it was placebo effect, ya know? Good ole power of positive thinking, right?

Well, like I said before - definitely egg on my face. The things that are different for me are things that I don't think I could "will" away or be different or have it be placebo effect.

I have NOT worn/used my fatigue medicine for nearly two weeks. Prior to the treatment (and during and the first 2 weeks after), if I forgot to use this med - after about two hours of being awake, I could NOT hold up my head - my entire body/mind would shut down. It was awful and "painful" in many ways. Even on my off days - when I didn't need to leave my house, I still had to use this med - as like I said, it was definitely painful to have that level of "fatigue". Anyhow - even though I'm not doing a lot these days - I am awake....and without the med, I can hold my head up and I'm not in that agony that I was when I didn't use them before! It's incredible.

I am still quite tired - but again, it's a different kind of fatigue. This is coming from the fact that my body went through the ringer and my immune system is still not back 100% or even near it, so it is to be expected.

I am still going to the bathroom regularly. Again, before treatment, it had been months where I could go ALL day without peeing (sorry if TMI...but you asked!)....and now, I go during the day regularly!! It's incredible. I'm drinking the same amount of water now as I did then. I don't have (as much) pain in my kidneys when I wake up in the morning.

For two weeks now, when I wake up - I can move my hands/fingers - before treatment, they would be in such pain and stiff, it was difficult to get going. Now, more often than not, no problems whatsoever.

I haven't used my cane since one week post treatment. Now, I mostly used the cane for balance and stability....but I never went anywhere without it - even if I left it in the car. Now, I haven't even taken it out of the house. I feel more grounded and less wobbly.

When I saw my neurologist a week and a half ago - I had a NEGATIVE Romberg test (the one where you stand, feet together, eyes closed, and hold your arms out in front of you). Well - that was the FIRST time in 7 months that that has happened! Previously, I would totally wobble and fall over. This time - I had very little wobbliness and didn't lean towards tipping. I could walk heel-to-toe much better, too!

I am experiencing fewer headache, too. Mostly, though, they have gotten bad because I'm not allowed to take any tylenol or advil - so I have to use oxycodone - which I don't want to use regularly - so I have been known to let the headaches get to an unbelievably unbearable amount of pain. I hate that and can't wait till I can use tylenol or advil again. (Can't use them now because #1 my platelet count isn't high enough and also, b/c my other counts aren't high enough yet, these meds can "block" a fever and so I wouldn't know if something was happening. At least that is how I understood it when they told me not to take these things yet!)

I'm not quite ready to say this was my cure - it is too soon - but I will say again - this is the longest period of time I have gone without getting worse - AND I have had significant improvement.

I told myself going into this - that even if I only get two years of "cure" from this - going two years without progression - is all I need - it buys me time, if nothing else. And of course, having symptom/disability improvement is icing on the cake! Also - time will tell how much "healing" has occurred from the damage already done. I haven't been sick that long - and so I guess there is a lot of hope that some of the damage may be healed or reversed. That would be the ultimate....definitely worthy of going off the diet for that piece of cake!!

I tell people now - look, send your records to JH (or one of the other hospitals doing it now) - it can't hurt, it doesn't cost you anything...and you have lots to gain if you're willing to do this. For me - it was a no-brainer. Ha ha....pun intended I guess! I know they are having the most success with RRMS - and possibly with those who haven't been sick as long and who have aggressive forms, such as I had.

:)

I hope this post finds everyone well....

Cheryl - I'm curious - why did your neuro think that you weren't a good candidate for this?

~Keri

Keri,

I'm glad to hear the good report. Have you been able to go back to work? I'm interested in this since I'm on Tysabri and it's working now but... you never know. I hope and pray that this is your magic bullet in the fight against MS.

Keri congrats on the progress and as for the ones who dont want to know about it they can pass this thread up, Please do not stop letting us know, many of us are curious about all sorts of attempts at stabalizing this illness, keep on keeping on, sounds like you are doing real good

So good to hear from you, Keri! Its great to hear your updates. I was dx'd at 50 and from what I have read, a later in life dx could mean a better chance for a more progressive form of MS.

So your journey is of great interest to me! So glad you are seeing some improvements, and above all, feeling less pain. I am rooting for your success.

WooHoo!! :D
I'm really happy for you, Keri..Thanks so much for the update!

Hope you keep on improving! :) Thanks for the update.

This all sounds so promising for you and a lot of others, who may be playing in your ballpark. I am just so darned happy for you..:):hug:

Keep up the good work and please do keep us updated. This is a good thing..:cool:

Hi Keri :). I'm beyond thrilled for you :D. Please inundate us with info :D. I, for one, am very interested in how HiCy works out for you and others. :hug:

Thanks Kari
I'm eager to hear your updates. And encouraged by your results. I can never hear too much info about HiCy. Keep feeling better and better.

:hug:'s

I'm so excited to see your update. So many people are interested that maybe you should start a blog about it.

There are "other" HiCy blogs out there but you are so good at telling us all these things. How things went, how you're feeling, what has changed.

Something to think about. You wouldn't have to blog every day, just when you wanted to update stuff. Plus, you can look back at it every few months and see the changes.

Good luck,
Weebs

Thanks everyone!

Weeble - I planned on blogging - even have the website address....just need to get it up there. I will try to do that this week - and then you can read detailed about the experience.

Today I just had my first copaxone injection post-HiCy. All I can is OWWWWIE!! I have a boo-boo!

I actually used copax when I was first dx. I used it for 5 or so weeks, then switched to Tysabri. In the beginning the copax didn't bother me - but towards the end, the reactions were big owwies. I've since read a lot of tips on how to deal with these - so we shall see.

Meanwhile, amazing - no owwie when I had chemo - but big owwie from one itsy bitsy little shot!

Today I am going back to work - part time - very part time. I will be wearing my wig - and am very nervous about that. Hope my clients don't freak out. Heck, I hope *I* don't freak out!

Will keep you posted!

~Keri

Keri,

Good luck with everything and I look forward to your blog when you're ready. I also remember those owwies with Copaxone. I always had big ole welts no matter what.

You are stronger than you even know. Keep that in mind.

Best,
Weebs

Keri:

You are a pioneer and an inspiration. Thanks for sharing your experience. Wishing you the best and looking forward to your continued improvement (and your updates).

JJ&LL

Hi Keri,

You "sound" so much more upbeat and undefeated since you've had this treatment. I still remember the months prior . . . and there is a huge difference in "our" Keri. I'm so happy for you, and I wish you continued success. :hug:

Now, what happens if you do not adjust to Copaxone? From what I recall, everyone who goes through HiCy/Revimmue is supposed to hop onto Copaxone after that. There must be some people that don't do well with this med . . . so then what? Will they rx an interferon, or ?

What I find interesting about this approach is that drugs like Tysabri are generally supposed to be recommened for people who do not do well on the standard therapies . . . and there are people like you that were approved for Tysabri on that basis. I know you hadn't tried the CRABs for long anyway, but what you tried included Copaxone, and it didn't "appear" to agree with you. Ironically, now you have to go back on it after Revimmune anyway. :cool:

HiCy/Revimmune is something I would seriously consider if my MS was very aggressive . . . but I wouldn't want to go on Copaxone after that. No offense against Copaxone, I just would (personally) prefer to not use a CRAB on an ongoing basis. How long do you have to stay on it, and what if you find you CAN'T take it?

All the best for continued success.

Cherie