A Note For Post Stem Cell Transplant Patients
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November 24, 2011 at 9:11 am
[FONT=”Microsoft Sans Serif”]I was just conversing with Linda M. and we were discussing something many of us post SCT folks forget to mention– After you have the treatment, healing is painstakingly slow. Nerves heal at a rate of 1 mm per day and it is not a symmetrical process. Meaning, it may feel like a very long time before major improvements are measurable to you. In addition, the very healing that is occurring is in and of itself a painful process. It can be confusing because the healing pain often resembles the pain of demyelinating. I can recall the months following my transplant and at times wondered if it even worked… There will be plateaus, advances and even the feeling that you are regressing. All things to keep in mind. My advise is to keep positive and realize the things I state above along with the fact that anything from a common cold, stress or a bruised limb will undoubtedly make the damage from the CIDP accentuate. Don’t confuse this with the treatment “not working.” The important thing to remember is likely the disease process has been halted and what you are left with is the agony of healing nerves– and this, only time will help. ~A
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November 24, 2011 at 9:28 am
I am probably one of the luckiest people to go through this entire process … I literally followed in Alice’s footsteps as we skyped through-out the process and recovery. I saw the 3 steps forward and fall back 1 … but always some progress. I am now 3 months post-sct and I would probably be questioning the success if I had not talked with Alice during this same time. To me it feels as if I’ve stalled or reached a plateau. But I continue to smile because I saw this happen with Alice and then, bam! another positive milestone would be reached in her recovery. I also am in contact with others that went before me and that is their reported experience.
I agree that the main thing to keep in mind is that sct is to put the CIDP into remission and I have no doubts about that at all. My body is no longer under attack – I can feel the difference – but I also have made some healing progress and know that I have more to go … when the body is no longer under attack, it will do it’s best to heal itself!
I am on skype, so if anyone is starting this path and wants to skype with me, please send me a msg and I will add you. I am skyping with someone just starting down this path and I think it helps a great deal to put a face with the story – it becomes much more real and tangible. I cannot express deeply enough how Alice’s story paved the way for mine.
Again, I wish each and every person receive the treatment path that leads them into total remission.
Happy Thanksgiving! I know I am very thankful!!!!!
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November 24, 2011 at 9:40 am
I am probably one of the luckiest people to go through this entire process … I literally followed in Alice’s footsteps as we skyped through-out the process and recovery. I saw the 3 steps forward and fall back 1 … but always some progress. I am now 3 months post-sct and I would probably be questioning the success if I had not talked with Alice during this same time. To me it feels as if I’ve stalled or reached a plateau. But I continue to smile because I saw this happen with Alice and then, bam! another positive milestone would be reached in her recovery. I also am in contact with others that went before me and that is there reported experience.
I agree that the main thing to keep in mind is that sct is to put the CIDP into remission and I have no doubts about that at all. My body is no longer under attack – I can feel the difference – but I also have made some healing progress and know that I have more to go … when the body is no longer under attack, it will do it’s best to heal itself!
I am on skype, so if anyone is starting this path and wants to skype with me, please send me a msg and I will add you. I am skyping with someone just starting down this path and I think it helps a great deal to put a face with the story – it becomes much more real and tangible. I cannot express deeply enough how Alice’s story paved the way for mine.
Again, I wish each and every person receive the treatment path that leads them into total remission.
Happy Thanksgiving! I know I am very thankful!!!!!
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November 24, 2011 at 1:14 pm
do you think having the chemo for cidp without going to northwestern for sct would give similar results as far as arresting cidp and healing?
I know it would be a longer process but would be easier for me with children still at home and a business to run. Lori -
November 24, 2011 at 1:59 pm
[FONT=”Microsoft Sans Serif”]Hi Lori,
I don’t believe so. The reason is simply because they cannot typically give you enough chemo to do the trick without the stem cells as rescue therapy. You see, the stem cells’ role is to quickly rebuild the immune system (the blood), after the chemo destroys it. By doing so, one’s chance of contracting a dangerous infection is minimized significantly. By doing chemo alone, they administer much less and subsequently and “usually,” the CIDP is not killed off, so to speak– it is just knocked back.
Having said that, Pam H. is an exception because her case was so dire and it was during a time before they had started doing SCT. And fortunately, she did reach complete remission/cure. She can speak to this better but essentially, she was given more chemo than would normally be given due to how terribly sick she was. I do not believe you will easily, if at all, find a doctor that would give that much chemo– the risk of dying is too high.
There are others on this board that have been given chemo alone, without stem cells. Perhaps they can share their experiences. But my understanding is that under normal circumstances, they simply cannot give you enough to kill off the CIDP within your system.
Hope that helps.
Happy Thanksgiving,
Alice[/FONT] -
November 24, 2011 at 10:02 pm
yes that makes sense Alice—thanks 🙂
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November 24, 2011 at 11:51 pm
I am very glad you posted this. I really felt confused because different people were posting different things about healing after the SCT. It just wasn’t consistent. But I think I may understand why now. Also, If I am ever able to get it- I won’t be expecting improvement or healing to take place immediately. Thank you so much for all of your dedication to CIDP. You have no idea what it means to people like myself who suffer from this terrible disease.
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November 25, 2011 at 9:15 am
[FONT=”Microsoft Sans Serif”]My pleasure.[/FONT]
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