Taking my coolaid, and have to wait 6 months for stem cell evaluation

Hi Ken,
I posted somewhere else that you were today asking how you were, I got my answer. Sorry things are not going well. I have a suggestion for a possible idea but I will have to post tomorrow, Kev is still getting treatments and the nurse will be leaving in a bit. Talk to you tomorrow

thank you for your concern. I did get my diagnosis. I pray things with your stem cells work for you.

Ken, first of all I am so sorry for all that you are going thru and all the uncertainty. Of all of people whose comments I read, your CIDP seems to be more like my daughter’s than anyone’s. We, too, typically go to 2 or 3 doc appts. a week, all seemingly for nothing. She is currently, besides pain meds and other anxiety meds, getting plasma exchange 1 x 3 wk, and 2000mg cell cept was started in 11/09, I understand it takes months to know if that is even effective. She did not respond to IVIG and became much worse (could not breathe on her own, but that aspect responded to PE immediately after first 5PE’s). After over 2 years now, she can barely walk with AFO’s and a very stable walker and that is very, very slow. She, too, has osteoporosis and I am concerned that one fall (she has had more than her share but not lately!) she’ll break an arm or a leg.

Neuro appts. are at the county hospital in LA County and we’re lucky to get in once every 4 months. That usually takes most of a day!

She cannot drive a car (can you?), still can’t do things with her hands, like use a knife or anything requiring fine motor skills and when not wearing AFO’s is still in a power chair. Weight seems to go up and down depending on the reaction to whatever med she is off/on. We don’t have a shower that she can use at home, and even at that with the perma cath (and that fortunately we have home health for flushing/cleaning once a week) she cannot get it wet, so we have to pay Supercuts to wash her hair and getting out of the bath tub is breath taking and heart stopping.

While I certainly don’t mean to minimize anyone else’s pain and suffering, it seems like many of the CIDP people have more mobility than she does. I don’t know how anyone is getting along with small children w/o help. My daughter is my other full time job and I am grateful NOT to have grandchildren because they would be mine to take care of. There’s just no way someone with her very limited mobility, feet, legs, arms, hands, could manage the needs of young children. Her physical needs were so extensive when I brought her home (diapers, bedpans, bed bathing,feeding, dressing,teeth brushing) that some days my legs were numb just from standing, pulling, pushing. Just getting her in/out of the wheelchair sometimes took 3 people and the transfer board, of course I was the lead person. Thankfully her mobility is improved, but there are still many things, after 2+ years that she can’t do.

What I am wondering and could not tell is, where you are going in San Diego? Is it Scripps? Has whoever you’ve been seeing been able to tell you why you have CIDP? To help with pain? With all the wasted time we spend here in LA County driving down there does not seem all that outrageous. Of course the cost would be a big consideration, I spend a lot on my daughter every month, but am extremely grateful for all the benefits she has been extended by the State of CA. She is Medi Cal only, not medi medi.

Hope I did not get off thread too much, but could not figure out how to start a new thread and I don’t mind that others are able to read this. Your life sounds so miserable, every moment excrutiating. I am truly, truly sorry. I hope that the docs see their way clear for the stem cell procedures. I will look for your messages with updates.

Hi Nicsmom

Hang in there, I know things are tough as my son Ryan also has a very aggressive form of CIDP. Ryan was dx Dec 2008 and we have spent the last 16 months trying to find a treatment that will help him get better. IVIG, plasma Pheresis and prednisone just didnt work for him. He finally talked the neuro into letting him do cytoxan (chemo) and he has had some good improvement.
Ryan went from being normal to having trouble walking and falling down to being in a wheelchair. He has been in a wheelchair since April 2009. This past summer was horrible we had to do all of Ryan’s transfers for him and bath him. he loss a lot of movement in his hands. it got to the poin that he couldnt even sign his name and barely type on his computer. He has made some progress while on prednisone and PE but it was very little. as of DEc In PT he has worked hard on his sit to stands and he was walking short distances with AFO’s and a walker.
But since starting cytoxan (chemo) on Feb 9, 2010 he is now walking around the house with just AFO’s no walker. He uses his walker and/or wheelchair when we go out and about. which one depends on how much walking would be required or how tired he is feeling. so if we run to blockbuster or chiropracters office he will use his walker but if we go shopping then he uses his wheelchair.
Caring for your loved one can be very overwhelming at times. I have spent my fair share sitting in my vehicle crying. or crying myself to sleep. I have tried very hard not to do it in front of Ryan but I must say there have been times I have cried in front of him.
Ryan has learned how to drive with hand controllers and he just bought a truck and a agency is going to pay for all of the equipment to be put into the truck for him so he can get into it and drive it. hand controllers, a seat that will come out of the truck and lower to his wheelchair so he can transfer to it and it will then lift him up into the truck, it will have a arm that will come out of the bed of the truck and pick up his wheelchair and then put it in the bed of the truck. and a cap that will cover the bed. He will also have a special steering wheel that will be easy for him to turn.
even though he may not need to use his wheelchair soon they are still going to put the wheelchair lift in because if he relapses he will need it then.
I just told you all that about the equipment because it might be an option for your daughter too when she is able to do more.
if the treatment she is on isnt working you may have to really push for another treatment. dont stop just keep on moving forward. I am praying that things will start progressing for your daughter.
Journal if you can so you can look back every few weeks and see if she has made any improvements plus it helps as a refernce when your talking to her doctors. It gives you a time line.
hang in there and I will be praying hard for you both.

Rhonda (Ryan’s mom)

Hi Nics mom,
I too am rather delayed regarding computer ability!!! Nice to know there is someone else out there! Anyway, to start a new thread, go to the left hand corner and hit forums, I use main personally so everyone sees it, but you can click on to a specific category. THen at the same place you will see start a new thread, just click on that. About your daughter, some people do pp followed by ivig the same day. Maybe the ivig was not close enough or a load. Is it possible to find out the dose and tell us the amount? About the cell cept, at last years symposium, it was suggested that cell cept could in fact cause central nervous system involvement. Is it possible to convince the docs to start back at square one w/the ivig in conjunction wioth pp? Maybe you could r/o out treatments for sure and then consider more aggressive measures if you are sure they are not working. If you are not getting any results from pp and ivig maybe you can add prednisone. As well, Ryan as well as Pam used cytoxan over a certasin amount of moths to supress the immune system even more that say cell cept. Alice has taken it one step further. She got the cytoxan at high amoun ts and had her stem cells harvested and put back. Alice did this at Northwestern in Chicago Illininois. She would be happy to help you with all of the correct details I am sure. Try clicking on her name under members list and it will give you an option to private message. When you are by her name, she has several other links you can go to to read about her journey. Good luck and keep us posted. My son is 13, I feel your pain.

Hi DawnKeviesMom and RhoMcc

Thank you for your helpful kind words. Our Dx was July 2008 and it just seems we are at a standstill for improvement. Actually, I believe that there was central nervous involvement before the cellsept. For over 3 months my life was somewhere between Poltergeist and The Exorcist. It was scary living with a mentally altered person who was paying more attention to the voices that weren’t real than to the ones that were. Fortunately with medication (more!) that has smoothed out. I don’t think I could have handled much more of that behaviour on my own. An out of control person bigger physically than I was more than I could deal with. One night she started to rip out her catheter I could barely hold her arms and call 911 at the same time. She was in hospital 10 days again it was hard for the doctor to justify keeping her there, but somehow the psychiatrist did w/o putting her in a psych ward which I did not want I would have just taken her home right away.

I am also still trying to work full time and have not been able to leave her alone. Honestly, I don’t cry at all, probably because there’s no one else to fall back on. Also, while friends of mine have been helpful when they can be, of course they don’t have a clue what goes on here most of the time. Have either of you experienced any of those bizarre symptoms in your children (my daughter is now 34)? Just wondering.

I feel bad for my daughter in that she will most likely never marry and having children now seems to be out of the question, especially with the cell sept. There are other things that have happened that will most likely preclude her having children, in a way I am grateful as I said before, since I would most likely have the responsbility of any children she had. I have enough responsibility. She still cannot take on the responsibility of her meds, we tried with unsatisfactory results, part of which put her back in hospital 11/09.

Well now I am sure I’m off the thread but would like to hear from the man in San Diego again.

Hi Nics mom. No, we id not have the mental anguish you describe. I did cry all of the time and people here were so supportive and uplifting. I contemplated meds but I was not sure that I could manage things at the level I needed to regarding doc appointments and research. Sometimes crying helps, it is like you are washing everything out, for me anyway. It gave me a chance to get back up and move to the next level acceptance. I think I am about 85% there now 3.5 years later. Is there anyone you can fall back on? Keep us posted. Prayers sent your way.

Ken, I know that you do not feel that the Rituxan will do anything, but it is a very strong immunosuppressant. Yes, it does not work for everyone, but it does help/work for some people. It is a very strong B cell immunosuppressant. The problem is that some autoimmune diseases have B and T cell contributions and some predominantly T cell as well as those that are predominantly B cell mediated. There are two reasons that it is worth doing rituxan EVEN if you do proceed to a stem cell transplant–first, it is a strong immunosuppressant and could potentially work with the stem cell transplant to increase the chance of success because it works in a different way than stem cell transplantation. When Rituxan first came out, people worried about stem cell transplant on top of using this drug, but it has been done now in lots of people with lymphomas and B cell leukemia, so the two can be used in overlapping periods of time. Second, the four to six months period of time off of cytoxan HOPEFULLY will allow your body to heal a little more and be stronger if then you were going to look further into a stem cell transplant so that this potential option would be safer for you. In other words, so even if Rituxamib is not a “home run”, it may be a force to hold the disease in check while your body heals and gets stronger for the next treatment and may be supplemental or complementary to that other treatment.

As a medical professional, I feel it is important to say that there is a lot more information about rituxan being used in CIDP than stem cell transplantation and most people (outside of Chicago) would consider it higher on the list of possible effective therapies because it has been used more for autoimmune diseases and has been used longer and at more places. Stem cell transplantation is new and exciting, but NEW is an important word to remember at the same time as the exciting part. Medical people like things with a track record, even if not absolutely positive while trying also to get a track record for that which is new and exciting.

My purpose to write is to be encouraging and to say that even if you are frustrated with the decision to do the Rituxan, this may be beneficial in the long-term to ensure that your immune system is completely reset and stays that way. I hope this for you, knowing that you have a particularly “bad” case. I do not want to rain on anyone’s parade about stem cell transplantation or rituximab. It is important to remember that rituximab takes a while to show up as improvement–typically manifesting as no added damage accumulating while the body heals–it is not really a dramatic drug, but it can still WORK. If the damage is stopped and stays stopped, that is the important point. There are cancer treatments that are really intense and hard on people and on the cancer. For some people, they may not work whereas slower acting treatments given persistently may work. One day we may know the best way to treat each person’s CIDP, but for now, it is important to think broadly–knowing that some things do work for some people and not others and other things work in those cases but not necessarily in the first subset. I hope that this makes sense.
WithHope for a cure of these diseases.

[FONT=”Microsoft Sans Serif”]ken,

i’m very sorry things didn’t work out for you the way you had hoped.
i had rituxan as part of my chemo regimen– hopefully it will hold you, or even better…

my heart is with you dear.

alice[/FONT]

Ken,

Sorry you are doing poorly and that you have to wait for the stem cell treatment. I hope and pray that the Ritaxun ends up being beneficial for you.

Ken,
Our prayers are with you bro.
Be Strong.
Soapy

Hi Ken,

Good to see you are still “on top”

I hope things work out well. I’ll be thinking and praying.

Dick S