Going to NW for a stem cell xplant evaluation

Thank you to all of you who replied. I appreciate the support!

Speedy, I know how you feel. I have been on most cidp drugs over the last 15 years, and currently take the Rituximab infusions every 2 months. I had a great remission initially with rituximab, but after years of infusions it is not nearly as effective.

I am remaining guardedly optomistic things will work out. I am basing the possibility of a positive outcome on the fact I did very well initially with the chemo (rituximab). Possibly the 3 different chemos and autologous sct I can at least get a couple of more quality years in.

In a perfect world I would even get better and feel better, but Ill settle for the continued ability to use my hands and walk.

Sorry Ana, just got on here and read your itinerary. Im going up there Tuesday the 15th through Sunday. Ill be visiting friends and family over the weekend.

Wish we could have connected! Just missed each other by a couple of days.

For everyone else I will give details of the process ad nauseum if you like.

There is no rock solid criteria for acceptance except: The neurologist and the stem cell transplant Dr. need to be sure as they can be you have cidp. My onset was unusual for cidp, but not impossible. You need to have taken the pred or ivig without any lasting improvement. Other than that you just have to be healthy enough to survive the xplant.

The neurologist who looked like a young Steve Young from the SF 49rs fame said I had been on all the right meds. I told him prednisone-no improvement

I told him ivig up to 2x a week with no improvement. Cellcept added with no improvement.

I started rituxin and had an actual remission for a year or so, then slowly started to get worse.

Thats the history I gave the Drs. your mileage will vary.

I had to take a cervical mri due to the fact i had a discectomy. They had to make sure my problems werent related to spinal stenosis. they werent

My emg study in dr Steve Youngs words “sucked”. He said it had the classic features of advanced cidp. My muscle atrophy in my hands and lack of deep tendon reflexes also helped the dx.

So all in all

I had an emg study……3 hours long,, yeah it hurt a bit but not too bad. I was told by the attending doing the test I shouldnt be able to walk. I love proving them wrong~!

I had the cervical mri for aforementioned reasons

I had a ct scan of my lungs due to the fact there was a mass found but was deemed benign a year ago, but they wanted to make sure.

I had an appt with the transplant doctor whose first words were, “what we do here can kill you.” “I havent lost any so far and did hundreds of the stem cell transplants for other diseases.” I think only a few for cidp, but my odds are good. He was a no bs guy who took my history and answered my questions.

I had to see a pulmonologist due to the spot on my lung, and I thought this would be a waste of time, but it wasnt. She dxd me with asthma I didnt even know I had. Worth the time for sure, and she said im one of many adults walking around with asthma and dont know it.

The tests ended with a few vials of blood and some pee in a cup.

After all that my wife and I decided we would relax Saturday and visit family and friends in the area until we got the call that the lady watching my 12 yo son at my home fell and got a concussion and almost a broken arm. So needless to say we felt we needed to get home.

I slept for 2 days and nights straight when I returned home.

Today I got my email telling me I was accepted and the letter to my insurance companies bcbs and medicare have been filed. Dr Burt seemed confident I would be covered. I hope he can deliver for me!

Mongo, I was only on 40mg a day prednisone.

Anyhow, thats it for now. I should mention we stayed at the Seneca Hotel which was within easy walking distance for my wife, but not so much me lol.

They give a special rate to NW sct patients through a deal with NW. For under a hundred dollars a night we got a suite that was like a small apartment. Full kitchen, 1 and a half bathrooms, two queen beds, and a living/dining room that was huge. Looked to be a 47″ led in the living area and a 37 incher in the bedroom. I shopped around and trust me theres nowhere cheaper on the gold coast of chicago. You can see the lake from the street in front of the hotel.

[QUOTE]Hi, John C:

Congrats! I was SCT #15, transplanted Sept. 16.

I am very interested in your comment about having had a discectomy. Me too. C3-4 and 4-5. One or two on this forum are interested in documenting relationships between CIDP and past medical history, geography, immmunizations, etc., in the hopes of finding some common threads.

I myself have noticed that a lot of us have had back problems. I wonder if the on-going inflammation from back problems somehow plays a role in eventually overwhelming the immune system and specifically targeting the myelin sheath cells. I don’t say that it is a necessary cause, and less that it is predictive….but it sure could be a contributing factor. In any event, there is at least a strong correlation between inflamed spinal nerves and CIDP. [/QUOTE]

I will say this as it is stated in my medical record: I had a bone spur in my neck, and this was prior to any cidp symptoms.

I went from a very healthy (for me) 185# down to165# due to the constant pain and muscle spasm between my shoulder blades. All the doctors I saw had pretty much told me theres nothing wrong with me via mri so they couldnt help. The pain remained constant over a year until i finally got so fed up i pulled straight up on my head and popped my neck. Instantly I felt the muscles that were contracted loosen their spasm. No pain after that until this past year when I had the discectomy done from another bone spur.

At the same time I was having the intense pain between my shoulders I caught strep and took penecillin for it.

I was also stressed out over a breakup with my gf of 5 yrs. and working 80 hour weeks, my record was 93 hours at work in a single week.

Also just prior to symptoms of cidp I had an oral hep vaccine as a work condition. I only did it once, and heard it needed to be at least 3 of them for full immunization.

You may want to educate yourself on tumor necrosis factor or tnf for short, if you havent already. If your body produces too much it can cause all the above symptoms. I believe that is where the cause and cure for this disease lies. Just my opinion.

Hopefully my story helps!

edited to say: I got an update email from NW yesterday saying my folder and the doctors drafts are ready to send to the insurance companies. I fully expect to be shot down the first time.

I got a call yesterday from the nurse at NW. She said my insurance company wants me to get more tests to rule out any possible underlying causes. I have had all the std tests and aids tests years ago, but they want them again.

I know I dont have any stds, or hope thats the case or my wife will be hearing from my attorney!

This to me is actuslly good news, because they want these tests. It seems to me once I jump through their hoops it will be harder for them to deny me, but then again nothing would surprise me.

My local MD and NW’s doctors are working together to get all the tests run locally.

If there is anything new Ill report back 🙂

I just got back from my local hospital where they took 15 vials of blood (the girl taking it said it was a record for her), gave me a muga heart test, and a pulmonary function test.

I heard the phone ringing as I walked into my home from the hospital, and it was NW calling to tell me I had been approved for the SCT! Wooooooooooohoooo!!!!

Yes, my lack of optimism paid off again! Not only did they not deny me they approved me in record time.

So, realistically I took all those tests today for the Drs at NW, not the insurance company?? Why did they lie about it being an insurance thing? Who cares Im in!!!

Thanks to everyone for the support and wishing me well! I will keep you all posted as I find out more.

Sharon, I didnt know about another forum member being up there now.

Being approved still hasnt hit me yet. I talked to my case worker at the insurance company and she said that the insurance would pick up 100% and up to 10k travel, room, and board IF it were an approved sct facility, which it is. The problem being that sct is still in trial stages for cidp could cost me a lot. She did tell me she sent it down the line for approval of 100%.

Im not complaining at all, but still hoping for the full ride. Just because I have cidp instead of MS treatment shouldnt cost me more, right? Thats not fair, and again the lack of public awareness of our disease is hurting us to an extent.

I have said for years until someone famous gets cidp and goes to Washington like Michael J. Fox for parkinsons, or Christopher Reeves for spinal cord injury, we will be at a disadvantage. I am not wishing this disease on ANYBODY, famous or otherwise. Just stating what I see as factual.

I know this: if this sct is an actual cure for me I will become a very active activist for all of us cidp patients. Ill fight for our rights to treatments that will help us without making us wait until we are too far gone for it to even matter.

If I knew how bad this disease would get 10-12 years ago I would have definitely gone for a sct if it were available. The sct sounds like it is the future front line cure for this nasy disease. It would be depressing to add up the cost to me and my family in dollars, and the insurance companies since Ive gone through ivig 2x a week for years, plus all the other treatments like rituxan, cellcept etc. Not to mention saving the years of suffering and worry for my family and I.

Sorry for venting, I just needed to let it out. 🙂

I will keep you all posted!

Thank you all for the kindness and support!

I will begin on the 31st of May with my pre-tests to the stem cell transplant. It is my understanding these tests are the basic make sure I can tolerate the chemo, and will take about a week of out patient. At the end of the week I will be given my mobilization dose of chemo, (Cyclophosphamide). This dose is given to increase my stem cell production as I understand it. I will have to stay overnight in the hospital during and shortly after this initial lower dose.

After the mobilization dose of Cyclophosphamide I will get Neupogen injections to raise white cell count. Neupogen has side effects, pain in the bones and joints being the worst of the usual side effects.

This is how I understand it so far, and if I have anything wrong I will correct it with the next update. Lots of info, travel arrangements, and some stuff I have never dealt with, like being away from my son for any length of time. I am sure he can handle it, its me I worry about 🙂 Its all a bit overwhelming, but I have learned not to stress over the little stuff, and concentrate on the task at hand, which is to wake up one day not feeling like a cidp sufferer!

Just got back from a week of more tests. Most were redundant, but Dr. Burt and his team of specialists are truly doing all they can to ensure a good outcome for the patient.

I met with Paula, Dr. Burt’s RN, and she was fantastic~! She talked with me for a good while, explaining the schedule and answering any questions she could for me. I signed the waiver of understanding the proceedure had risks. There were lots of forms asking the same questions I filled out. I also did some surveys relating to how disabled I am.

The blood~!
I dont know all the blood tests specifically, but they took 20 vials total this week to go with the 15 I gave initially.

They had me take a sinus ct scan, and follow up with an infectious disease doctor to make sure I didnt have any infections or viruses of any kind. They checked on everything; and the infectious disease doctor told me all of the childhood diseases I had like chiken pox, measels etc. She was an awesome doctor, who spent a lot of time with me talking and answering any questions. Her name was Dr. Valentina Stosor, and she was very pretty to top it all off 😀

They made me see thier dentist, and of course I had just seen my dentist for a cleaning, crown and xrays. They wanted to make sure I didnt have any infections in my gums. The xrays they gave were the old type that gagged me every time she stuck the cardboard in my mouth. I hate that~! She was very patient and said she felt bad about it gagging me. Had to be done I suppose. I did tell her that they did have more advanced xray machines where the patients dont feel anything at all. (yes I was a bit of a wise@, but after gagging 30 times I felt justified 🙂

I also had a quick ekg, and an ultrasound of my heart where they injected saline to test for leaks I suppose.

Outside of the cidp they all agreed I was pretty healthy.

Thats all I can remember for now, and if I recall anything else I will keep you all posted.

My posterior is dragging, and its good to be home. Its a tough process that will get tougher, but I keep on looking at the big picture. I will do everything they throw at me, because the chance of waking up one day not being “sick” is worth it all.

Much love to you all and thanks again for all the kindness you have all shown me. If posting my experience helps any of you or yours then I will have accomplished my goal.

By the way I lived most of the first half my life in and around Chicago, and I can give some decent tips on the best ways to get around the city. I also know the best restaurants in the area in every price range etc. Just ask!

Im home this week and will begin the mobilization chemo dose and stem cell harvest the following Monday. More to come.

Lori,

IVIG hasnt stopped the progression, and I was on it for years. I did not respond to steroids either. Rituxan was the only “remission” I ever had. Unfortunately other than Rituxan just not being safe to take for 5 years or so, it also stopped working as effectively. I have noticed more loss in strength, increased numbness, and pain while on the rituxan.

I feel this is my best shot because the Rituxan did help me greatly in the beginning, and I feel that this stem cell transplant takes chemo a step further making it more effective.

Speaking with my assigned neurologist, Dr. Allen, he said my treatments were exactly what he would have done. I told him how I wished I would have found him years ago, so I wouldnt have had so much permanent damage. He just smiled.

I suggest you contact Paula, Dr. Burts nurse at Northwestern. She will send anyone who requests a form to fill out to see if you are eligible.

If I were to know 12 years ago what I know today, I would have jumped in the program at any cost. Obviously those who have the disease and long remission, plus little damage the sct would be a bit radical. Thats just my opinion.

Anyone interested should contact Paula for the forms. She will email them to you. She can even send you a sample schedule of the whole process.

I would do the aggressive treatment for a short while to see if it did any good. If not, go for the SCT. I lost a lot of muscle and feeling in my body due to trying different things, and staying on certain treatments too long.

Thats just my thinking, and my hindsight is pretty good.

As far as regeneration of nerves goes: Dr. Allen (my assigned Neurologist) of NorthWestern said it all depends on how long your nerves have been damaged. The more recent your damage, the better your chances.

They asked about IVIG and Prednisone specifically on the patient intake form. How long and how often. I think failing aggressive IVIG treatment will get you seen for an evaluation.

They also had a space for additional treatments. You can get an intake form from them if you email NW. It lays out the requirements for the proceedure.

I personally think Mayo and the Two Dycks are/were highly over rated. I am interested in hearing if the young Dyck does anything aggressive for you. I honestly believe the diagnosis from Mayo was important, but other than that I had a very uncomfortable time at Mayo with lots of off the wall tests from the old Dyck. The whole report from Mayo ended with something like “I the most godlike Neurologist in the world, agrees with your Drs. diagnosis and treatment of your cidp.” <---- joke 🙂 but everything other than the godlike comment is true. I would not wait until you cant walk or type to speak up. If IVIG wont do the trick, and prednisone wont do it, then I would contact NW. Rituxan long term is dangerous, and if you dont respond to IVIG you likely wont respond to plasmapheresis. The latter is also dangerous due to staff infections. This is just my way of thinking Lori, and I am no doctor. If I could have stopped this disease at 2,3-5 years in????? Yeah Id do it in a heart beat.

[QUOTE=Lori222]OMG your post gave me a good laugh—-not that i thought it was funny that neither of the Dycks did a thing for you–just your way of posting it was hilarious!!! Too late for me to back out now–hotel reserved, plane tix bought and week off from work—hopefully they will have some useful suggestions. I hope all goes well at northwestern for you. What is your level of mobility right now ? my hands/arms are not affected, feet, ankles and calves are weak. I can walk unassisted but its tiring, no running,jumping,tiptoes or heals. no autonomic involvement at this time.
Lori[/QUOTE]

😉 Its always good to laugh! 😀

Update:

The last 2 weeks have been rough, but I am actually feeling much better today.

Monday-Checked into the hospital for my overnight stay.
Was given cytoxan along with pre meds, and after the chemo bag emptied I was flushed out with saline and lasix. Lasix makes you pee, and i peed gallons lol.

The nurses and doctors were incredible! I was taken care of by some of the kindest, smartest, and most genuine caring people I had ever met.
They went out of their way to ensure I was comfortsble and safe.

I got discharged the following day and went to the hotel to rest.

I was nauseated, running a fever, and sweating no matter how cool it was. Dr said it was from the neupagen. Lots of stomach and body pains, as well as some bone and joint pain also caused by the neupagen. I never vomited, but stayed pretty sick feeling until saturday night. So all in all very good so far!

Wednesday had blood tests.
Thursday was an off day for rest and fun looking around the city. P.S. get a CTA map and buy a CTA pass good for the trains and buses. A short cab ride is $10.

Friday
More blood tests.

Saturday
7am began the first neupagen shots in the series. Took My meds. had to take the shots everyday for 6 days.

Monday
Blood tests

Wednesday
Blood work

Thursday
7am got temp catheter in my neck. sounds bad but quite it was painless.
Went to the blood center for my stem cell harvest, which took around 3 hours and had the catheter removed.
I felt drained and week, but managed to eat a good dinner.
DISCHARGED!

I was tired and weak until Saturday evening (now) and fly home in the afternoon tomorrow!!!!

July 3rd my hair started coming out in handfuls from the cytoxan. I thought there was a chance to beat that side effect. I was wrong 🙂

I shaved my head, and its not all that bad. It just takes some getting used too. On the bright side my wife found a cool star shaped birth mark on the back of my head :rolleyes:

Thanks Sharon 🙂

How long will my inpatient stay actually be? They said 3 weeks, but I could go sooner if my white cell counts are good.

#17 here 😀

Thanks Linda!

I hope everything goes well for you and you are released as quickly as I.

Sorry we never really got a chance to speak, but ask the nurses when in doubt. They have more than a couple tricks up their sleeves.

Sorry for not posting the rest of the enchilada yet. I am super busy since getting home, but have not forgotten~!

I actually can post specific counts on specific dates to give those current and future patients an idea of what to expect. I plan on a lengthy post.

If your counts are up you go home was what I was told over and over by Amy. My counts were up Thursday, and I left Friday before noon. I was on a plane at 2pm and home by 5pm.