I’m getting an eval @ NW

have been contemplating this myself—but both my own Dr and Dr Dyck recommended giving the ivig a more aggressive approach and longer try…..so thats what im doing now. But–i feel as though im wasting precious time that i could be out having fun and enjoying life,if i could just get rid of this crappy disease and get on with life Seems like sct is doing just that for people:) best of luck with your appointment

yes i agree lori. my son started crying last night about how he misses how long walks and bike rides with mom. he asked how much longer im going to be like this. it broke my heart.

i hear you—really miss being active with my kids, i used to play and coach so many sports with them, its hard to just sit and watch—especially the big family kickball games 🙁 i am the competative one.
AND…..my golden retriever has really been putting on weight without my long walks with her. I feel bad, she used to get so excited just seeing the leash.
Im hoping in time…i am seeing small improvements on the 16 week ivig regiman im currently on. 9 weeks to go.

Did your doctor recommend the SCT or did you apply on your own???? I am considering SCT because the IVIG is not helping and I have had a steady decline, but the doctor wants to keep on with it. I am at a crucial age where I may not meet the criteria if I wait much longer. That is why I feel like I am in limbo.

Good luck with your evaluation.

congratulations 🙂 that is good news. good luck with your evaluation.

I wish you the very best with the sct process! I got my sct Aug 23rd and can feel the healing already. I don’t feel like my body is under attack any longer and I can walk longer without screaming pain. Before sct, by the time I made it from the handicap parking spot to the entrance of the store and the electric cart, I was in so much pain, I could hardly shop. Now I can walk a couple of miles and bike 10 miles!! I know this next year will involve pain as the mylin sheath repairs and the nerves regenerate, but I’ve been in pain for 3 years, so at least this will be healing pain.

Good luck!!!

Linda M,

It is so refreshing and encouraging to read this type of feedback.

I hope you will continue to stop in on this forum once in a while to keep us updated.

How about improvements on the adl list- turn a key in the knob, tie your own shoes or button your blouse, have you noticed any improvements to focus on that you could share?

Thak you, yuehan

I am happy for you, WendyLouise. You are a good person. Congratulations!

Yuehan – most of my improvements right now are in the pain area. Since my body is no longer under attack, the screaming pain has declined. The mobility and feeling in hands/feet will take longer to heal as it will be almost a year before the myelin sheath and nerves can repair – that is a slow process. I’m told improvement can continue for up to 5 years. I also was told that the nerve conduction study at 6 months usually does not show much improvement except in the area of demyelination (stopped and repairing) – but that the 1 year study shows significant improvement in nerve reaction. I am back at work (returned 10/11) and am working full-time. I have a desk job and am allowed to telework from home part of the week, so that all helps. While I still have the numbness, to be without so much of the pain is wonderful. However – I’ve also been told there will be pain involved as the nerves regenerate, so don’t want to offer false hope. I also have the sensory variant, so no muscle involvement. The recovery is different for everyone depending on the type and the amount of damage.

A friend of mine just got her sct this past Thur (10/13) and already has better mobility! This is truly an exciting and wonderful program!

LindaM,

I love it! Thanks for your descriptions and explanations on your improvements and the expected outlook.

I am so very happy for all of the initial SCT pioneers. Well, a pioneer would be initial wouldn’t it? OK, OK remove initial.

Congratulations on returning to work.

Yuehan,

Thanks for calling me a pioneer – but I truly don’t feel like one! Although I might be only #21 for CIDP, Dr. Burt’s been doing this for so many autoimmune illnesses with good success (75% success for MS, higher for other conditions), that I feel almost more like the caboose than a pioneer!!!

Smiles,

Yes, it is true that the NW Stem Cell Transplant Program encompasses many auto immune diseases.

I have posted other threads on this and given links that connect directly to the Clinical Trial pages, as have others.

What is ‘interesting’ is that there are success stories that go beyond ‘arresting’ the condition to real, measureable, livable improvements that no longer require any treatment.

Can all of us imagine a life without regular treatment, whatever the type?

I can imagine a cure, and that is what I pray will happen for all of us.

WendyLouise,

Ask Paula to send you an application for the “home away from home” program. It is a charitable operation that offers two free hotel nights (at a nice hotel) for those coming for evaluation. I had to stay three nights, so only paid for one of them and it was at a medical discount. It was a nice hotel and the discounted rate was less than $100. Not bad for 3 night’s stay! I will warn you though, I was surprised when I checked into the hotel and the room was booked in my name and a man’s name! LoL! Turns out it is one of the members of home away from home …. and by having his name on the reservation, the points for the 3rd night where I paid go back to the program to help the next person … but it did catch me off guard!!! :p

You can also ask Paula about free housing – it’s not as nice, but is clean and is free and is close to NorthWestern!

Good luck – please keep us posted!!

I guess I forgot to mention one area of huge improvement in my life, is that I no longer take treatments of any kind. I went from weekly IVIG (and was about to go to twice a week) and Immuran to no IVIG/immuran at all! No treatments as there is nothing to treat!!!

Additionally, I’ve reduced my daily Rx substantially!!!

Wendy,

I still had good mobility when I went for my first evaluation in Jan (used the home away from home program for lodging). After evaluation, I was considered not to be too bad off and was initially declined from the sct program. The NW neurologist I saw, Dr. Allen, didn’t feel I had tried the Immuran at a high enough dose for long enough. Additionally he felt I didn’t exactly meet the criteria for the study since my muscles weren’t impacted from the CIDP. I have the sensory variant and he was looking for that muscle involvement for this study.

I went home a little dejected (ok – maybe a lot) but then Dr. Burt called my neurologist, Dr. Blum, and they agreed on a trial treatment plan for me. They also all agreed that IVIG/PE/whatever is not intended to be a lifetime ordeal. Treatments are all aimed at putting the CIDP in remission, so he considers it a failed treatment if you go off it and get worse. I have been on IVIG since Oct ’08 and was getting worse – the last year was weekly and Dr. Blum wanted to make it twice a week! Like you, I just don’t see myself strapped to treatments for the rest of my life – especially when I am so close to retirement and have always been an active person – I want that back!

So I followed the plan and went off the IVIG and upped the Immuran and I did get worse – fast. And to make it even more interesting, I tested positive for Sjogren’s and got started with a rheumatologist! Dr. Burt called me back in May and I went through the evaluation again (that’s when I stayed at the free housing). Dr. Allen was still uncertain about me meeting the study criteria, but since they all agreed what I have is autoimmune, I was accepted as a compassionate case.

I love the way things can come together (God is so gracious with me!!) … because I was initially outside of the study, my insurance paid! Northwestern contacted them for me to get a bone marrow transplant and it went through quickly. Who knows, but it might not have been the same story if I had been accepted back in Jan??? Anyway, I was back in Chicago early July and received my stemmies back in Aug. Besides all the required tests, I also had a lip biopsy as a more definite test for the Sjogren’s – it came back inconclusive.

Another CIDP friend went through a similar situation – her other complication was RA. She also recently completed her sct, but like me, went through the evaluation twice. Additionally, I have another CIDP friend that had two evaluations – hers with a possible secondary diagnosis of MS.

I’m not saying all this to discourage you, but rather to encourage you. Each person that gets turned away gets a reason and it is worth exploring. The common theme between the three of us is that we all still had good mobility. The other common theme is that we all went through the sct program and are all doing better.

This is a really awesome journey you are taking – a journey of hope. My wish for you is that you can relax and find joy in that journey,

such good info Linda 🙂 thanks for posting so much about your sct—it’s very helpful. I was glad to see this post about ivig, pe etc as NOT being lifetime treatments. This is what I’m going through right now by following Dr Dycks 16 week ivig regimen—if it isnt going to alter my immune system in an agressive 16 week plan—then on to the next treatment!! im already upset that i wasted 2 years doing it every 12 weeks, i wish i had gotten more aggressive then.
Im glad your pain is gone and you are doing well–are you still noticing improvements?

Good Luck, Congratulations, have you thought of blogging, we are tossing around SCT for Heather as she is so Young and to live with this evil illness like this I just can’t stand/nor can she, any longer… Plasma does not seem to be doing anything for her.
Good Luck… get better.. You a brave and wonderful woman.

Do you have to be disabled to get the SCT? I have CIDP and am not disabled at this point. I get IVIG every 3 weeks and am able to keep this disease at bay. But I can’t stop the IVIG or I decline. I was contacted by NW a few weeks ago because I had called and left a message. The woman said that you do not have to be in bad condition, just need to show that the IVIG is not stopping your progression. I also tried pred and can’t stay on the pred because of side effects. The woman at NW said I should submit my records to be reviewed. My doctor is against it. He said that it is such a grooling procedure that he would stay on IVIG for as long as I can. But my feeling is that I don’t have much damage right now and if I could stop the progression of my disease now while I am healthy and not in that much pain then I could go back to a normal life not surrounding my next IVIG treatment. I hate living this way. I have much anxiety and fear about my future and the progression of my disease. I know the SCT is still in trial and it is grooling but if it could cure or at least put me into remission for long term I would be greatful to go through it. But I don’t know if it is too much a risk for someone like me. I have mixed feelings. I guess it could not hurt to submit my recoreds just to see if I even get an evaluation. Then go from there. Has anyone gone through the SCT that was not really sick and at the last resort? IVIG is good for now but getting it every 21 days I know I will need a port at some point and i thing $16,000 every three weeks actually costs my insurance company more to maintain me then it would for then to cover the SCT once and for all and get me off their system as needing the IVIG. Just so sick of CIDP and I have only had it for a year.

I’m getting IVIG every 10 days for the past 2 years. Dx in Novermber 2009. When I was weaned to every 2 weeks (once in Nov. 2010 and once in April 2011), I became weak again. I have 2 neurologists. When I asked her about SCT, she said she’s never heard of Dr. Burt; and says the risk is greater than the benefit. That’s only her opinion–she doesn’t know how CIDP feels and all the treatments, the anxiety, and worries we all have, the pain, tiredness, etc.
I once read that IVIG doesn’t induce remission. Don’t know if this is true or not; or everyone is individualized. I’ve had this disease for 2 years and I am still don’t know what to do. I did email Northwestern. I am indecisive. I am also very scared of the chemotherapy, things that could go wrong, the loss of my hair (this is a bad reason), can it really work? When I dwell on my disease, I get really depressed. I dont smoke, drink, or do drugs. Why did this happen to me???
Can the people who have gone thru SCT allay some of my fears?
Thx

[FONT=”Microsoft Sans Serif”]my hair came back 😉 [/FONT]

I know many patients have true fear and much trepidation regarding anything to do with chemo and/or the stem cell transplant program. I didn’t have those feelings; I was excited because it represented real hope to me. Once I was accepted into the program, you couldn’t wipe the grin off my face!!!!

I’d been on weekly IVIG for a few years. Before that, tried a combination of timelines and the weekly was the only thing that kept me working. However, the pain continued to increase and the IVIG became less and less effective. I had a very short trial of steroids – but didn’t do well on them. I also tried Immuran without results. The only two treatments left to me were plasmapheresis and/or chemo. So I could keep trying different conventional treatments or go for the brass ring, the stem cell transplant! I was already a couple of years into treatments and continued to slowly get worse …

So I really, really looked into the program. I learned that the equipment used to harvest stem cells is identical to that used for plasmapheresis … so I was being offered to start off with 6 plasmapheresis treatments or I could go into the stem cell transplant program and have a similar procedure done – once. Hmmm, one time vice a minimum of 6??? Liking the sound of this!

I was also told by my doctor that plasmapheresis would probably not be enough, and I would most likely be on chemo within 6 months. I’ve read here on the forum that treatment usually consists of at least 6 chemo treatments. The stem cell transplant process has you on chemo one day prior to harvesting and then 7 days in the hospital prior to the actual transplant for a total of 8 chemo days.

I weighed all the factors and I really liked the idea of getting it all out of the way in a matter of weeks instead of trying additional treatments for an additional year or so … I didn’t feel the stem cell program was nearly as scary as continuing with trial and error treatments that may or may not work!!! Even though I worked up to the Friday before I left, the fact that chemo was an attractive alternative, should tell you how bad I felt and how badly my life was impacted by CIDP.

As far as your neuro telling you the risk is greater than the benefit … how can she know if she’s never heard of Dr. Burt? I challenged my neuro on that thinking and he did do the research and changed his opinion completely.

I had no problem with the chemo – didn’t get sick. I cannot say that about others. There were 9 autoimmune patients going through the stem cell transplant at the same time. A few of us never got sick, a few had a rough day or so and a few were sick most of the time … the one thing we ALL agreed is that, regardless of hurling or not, it was all worth it. It really is over faster (and in some ways slower – haha) than you think.

But for me, the bottom line is that I am way more afraid of CIDP than I am of chemo and so I went into this fully excited and happy – like a little kid on Christmas morning. Hope is a giddy thing!!!

Hi Linda,
I am also considering contacting NW for an eval on the SCT. I was wondering, once it was over. How long before you could return to working full time or at least part time? My big problem is that I can’t lose my job and I can’t be gone for months and months. How long was the process in the hospital and then after to recover? I am sick of living my live around CIDP. I want to start living a normal life again. Chemo scares me too but so does sitting in an infusion center every 20 days for 6 hours for the rest of my live, getting a medical port installed, and getting sicker if the IVIG stops keeping me where I am now. I want to get the SCT while my body is healthy and I don’t have long lasting damage. I don’t want to wait until I am at the point that I am getting damage to my nerves and I have no other choice.

chirpybirdy – I took a total of 3 months off from work. It took me awhile to work out the details, but I finally was able to make it happen. I also asked Paula (Dr. Burt’s nurse) to give me the most compressed schedule possible because of work considerations. I arrived in Chicago July 11th and left Sept 2nd. I went back to work on Oct 11th. I am a manager and have employees in 3 different locations, so my boss is liberal with allowing me to telework from home … afterall, I don’t office with most of my employees anyway. I don’t want to take advantage, so I usually go into my office Mon, Tues, Thur, and Fri and telework from home on Wed. I initially started back full-time but was tired, so went to 6 hour days for a couple of weeks. Back to working 8 hour days now. Occasionally I telework more than just Wed. If I feel low on energy, I don’t waste it getting ready and driving in – I just roll out of bed in my pj’s and hit my home office! It’s been good and I don’t take any treatments of any kind any more!!!! It’s been three months post sct and I feel my energy returning…

exosurf – I forgot to mention that there is a difference in the way chemo is done for sct and for cancer. For cancer, the chemo needs to blast the entire body in case any cancer cells lurk anywhere. For sct, the chemo is used to shut down the immune system, so we received a pre-treatment that coats our organs to protect them from the chemo. Hope that helps take away a little fear?

Thank you, Thank you, Thank you. Linda M for being candid and answering the questions. And ChirpyBirdie, thank you for asking them! We are serioulsy considering pursuing this for our 18 year old daughter.. Please post and please keep in touch!!!
Mom2Heather
PS. does anyone who has received SCT, mind chiming in with their ages… you can ball park it…
Anyone who has received the treatment willing to talk to me on the phone?

Lianne – I wish you and your family the best course of treatment possible for Heather. I know this will be a difficult decision because there are possible long term side effects, such as sterility, that don’t concern me since I am 61. Ryan is in college and visits this forum occasionally. He went through chemo to put his CIDP into remission. Also, his mom, Rhonda comes here periodically, so maybe one of them can talk to you and Heather about the chemo aspect. I will send you a PM with my number if you want to call me about the overall sct process.

I always hate to hear/read about any young people suffering with this – it’s such a confusing disease.

hi wendy—how did you make out at northwerstern for your sct consult? hope all went well 🙂 did you meet up with Yeuhen there? he left for the sct a while ago and hasn’t been back on the board since???hope everythings okay with him.

yes–i bet a lot is going on in your mind while there. that is great news that you got accepted on your very first try 🙂
we can just hope the best for yuehan and hope he is doing well.

Yeuhan was there at the same time as another friend of mine – he’s been out of the hospital for at least a month, so doubt he’s in Chicago at this time. My friend told me (while they were both still in the hospital) that he was doing great and felt better and was doing better before he left the hospital. BTW – my friend is also doing good. She is just bored staying home, but is happy she went through this … even though her insurance didn’t pay!

that’s good news Linda—glad he’s finished the treatment and doing well. How are you doing—are you still seeing improvement?

Lori,

I am still doing good – hit a plateau for awhile, but saw a surge in my energy last week that is still going strong. Everyone I spoke to that went before me told me there would be days I would wonder if it is working …. but since I knew what to expect, I’ve not questioned the harder days. There still is a lot of damage that will take time to repair. But I can walk without the screaming pain, I signed up for a dance class starting in Jan and I am able to do more and handle more!

All in all – I am very excited about where I am in the process – especially if compared to this time last year!!!!

Thank you for asking,