Lori

Anonymous
December 19, 2011 at 4:39 am

When do you go? I will be praying for success!!!

Lori

Anonymous
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]

Lori….

Anonymous
December 17, 2010 at 2:52 am

I too will continue to pray for all on these forums here. I take cymbalta and lyrica plus some 80 mg of oxycontine 3 times a day. Lori, the winters does make it harder for me too here in the mid west of U.S. I don’t sleep much at night either. Well, you can see the time of my posts here in east KY. Eastern time zone. The pain and fatigue are hard for me to deal with too.

Good night and God Bless,
Drummer

Lori

Anonymous
December 2, 2010 at 11:43 am

Lori, I wasn’t much worse than you are now when I had my sct. Like you I had numbness and sensory loss calves and below. However, the insides and backs of my legs were never affected…only the outsides and fronts of my legs. Nevertheless, my legs began to atrophy a bit and balance and walking easily became a problem. I developed drop foot in my left foot and, in Nov. 2009, tripped on my foot and broke it. That scared the bejabbers out of me. I began using a cane out of doors (not in the house), and in Jan. 2010 I was fitted for leg braces. Also, around Nov.2009 I began to have slight numbness and shaking in my left hand.

I continued to work up until I received the call from Northwestern in late July of this year. I run a non-profit with 4 offices throughout the state, so it is a pretty demanding job. Truthfully, for the last 3-4 months that I was there, prior to going to Chicago, I was fatigued and foggy towards the end of the day. Partly that was the disease; partly the massive doses of prednisone I was taking.

Anyway, I don’t think it matters much how bad your CIDP is, and I believe that they won’t even take people in wheelchairs anymore (at least that is what my neurologist at Northwestern told me). The larger issue is have you failed to significantly improve under the standard treatment plans? You mentioned that you had taken prednisone. Did that not work? If not, and you are not realizing much improvement on IVig, you may qualify as a candidate.

Good luck!

Sharon

PS: My insurance paid for both the evaluation and the sct. The evaluation was listed as a second opinion, which is why they paid for it. My doctor here requested the second opinion and had a peer-to-peer consultation with the
BC/BS staff physician in order to obtain approval.

Lori

Anonymous
December 1, 2010 at 2:54 pm

Hi, Lori,

I believe it is important to stress, as Alice points out, than many, many people eventually get worse while on IVig, prednisone or plasmapherisis, the standard treatments. In fact, that is the fate of most. Autoimmune diseases tend to be progressive by nature…so treatment that has worked for awhile may come to be ineffective. Also, I have heard it said — maybe on this forum — that improvement after a relapse never quite gets you back to where you were. You always lose a little ground. I can’t speak to that, since I never had a remission to have a relapse from!

Undergoing SCT really is a personal decision. My neuro here kept telling me that I likely would not experience full recovery, since I have axonal damage in my legs. My response was: “That may be true, but at least I won’t have this stinking disease.” Getting rid of the disease was the decisive factor for me. That said, I fully expect to recover some, if not all, function. I am already seeing improvement in my hands…once upon a time, just typing this would have been a major challenge, because of tremors in my left hand.

Lori, if you decide not to do SCT, I hope your decision will not be based on fear. It really is not a risky procedure, though of course there are risks, just as there are in any major medical procedure.

Best of luck in arriving at a decision that is right for you.

Sharon

lori

Anonymous
November 30, 2010 at 11:07 pm

[FONT=”Microsoft Sans Serif”]hey there–
to answer your question i would ask you to ask yourself if living like you’re living is acceptable– and– will your current condition stay stable with your ivig treatments or, like many, will it progress at a later date despite ivig or other treatments…?

obviously no one can answer the question for you lori. it is a very personal and significant decision. but i would say this– consider it a treat to yourself, like considering yourself worth the effort, time and money. you mention work– consider 4 months (minimum) off work between treatment and recovery (depending upon how strenuous your work is of course). but also consider whether you will be able to work in the future if your condition worsens.

i can tell you that i knew 3 months after my 1st symptoms that i was getting the SCT. I did NOT want to live with this story– its a life sentence and i just couldn’t accept that. maybe i’m too spoiled but maybe that’s not such a bad thing in this realm… and at 3 mo. after 1st symptoms, i was less damaged than you are now, according to your description– and i would have gone then, if they would of allowed it. as it was, i had to 1st try and fail two treatments to be eligible. that is exactly what i did.

best–
[/FONT]

Lori

Anonymous
October 3, 2010 at 3:59 pm

Does your lawyer or legal aid do Social Security only? That helps a bunch.

Lori

Anonymous
August 26, 2010 at 2:54 pm

I agree with Mochacat!!!

Love, & gentle hugs, smitty

Lori

Anonymous
August 26, 2010 at 2:03 pm

Don’t be guilty or ashamed or embarrassed. It was not your fault. I will continue to pray for you.

Love & gentle hugs, smitty

Lori

Anonymous
August 26, 2010 at 1:54 pm

Have her arrested!!!!Throw the book at her!!! Kick her —!!!! Sue her for pain & suffering!!! Sue her for your physical damage to your neck, back, & all other damages!!! DO THIS YESTDAY!!! This type of assalt on a handicapped person is attempted murder!!!
So very sorry this happened to you, such a dear sweet person. I’m praying for miracles for you,& for mercy strenght & healing. So very sorry the damage to your neck & back is so painful. This kind of emotional stress is certainly not good for your GBS. Oh dear sweet Lori I will continue praying for you.

Love & gentle hugs, smitty

Lori

Anonymous
August 6, 2010 at 6:50 pm

Congrats to you both! That’s wonderful! Wow dandelion syrup, never heard of that.

Love, smitty

Lori

Anonymous
July 25, 2010 at 8:47 pm

I agree, Beautifully said! Congrats on your anniversay! You’re not giving up. Sooner or later we all greive for the loss of our body & embrace our new life. Focus on the things we can do & laugh if we can on what we can’t.

Thank you all for your prayers, you’re all in my heart & in my prayers.

Love, smitty

Lori

Anonymous
June 16, 2010 at 11:24 am

It sounds like savella is working great for you. One of my Drs. gave me the package, I took the first pill at bedtime as ordred, then read the side effects & warnings…worsening depression….thoughts of suiside….attempts of suiside…..insomnia……RLS. I couldn’t sleep, had RLS, & became very depressed, a few other worse things, will call my helthcare provider. Glad it’s working for you.
God Bless You.

Lori

Anonymous
March 13, 2008 at 8:13 pm

I did find the white blood count results. The infu sion Center did their own tests.

According to them the normal range is 4.0 to 10.0

Before the infusions: 4.5
after first infusion: not done
after second infusion: 5.3
after the third infusion : 4.9
after the fourth infusion 5.1

They did lymphocytes separately which includes just B and T cells

Normal range is 1 to 4.4

Before the infusions: not done
after first infusion: not done
after second infusion: 1.4
after the third infusion : 1.2
after the fourth infusion: 1.2

Do you know what Dell’s WBC was before he started infusions?

As I told you on the phone earlier, his WBC is not dramatically low, in my opinion. A drop is to be expected after Rituxan. I’m surprised that mine didn’t drop.

He will be fine. Take care

Lori

Anonymous
March 7, 2008 at 1:46 pm

Hi Lori, I’m glad you posted the e-mails between you and your doctor. As far as CD19 (read B-cells) is concerned, there’s nothing to worry about in my opinion. First of all, they were within normal range to begin with, just a little bit on the low side. This probably is due to the Solumedrol which suppresses the immune system. Like your doctor said we actually [U]want[/U] them to go down with Rituxan treatment. Mine are probably down to almost zero 4 months after my treatment. That’s the goal. CD2,CD4,CD8,CD56 are markers on T cells and other immune system cells. They’re probably monitoring them because of the Solumedrol to see how his immune system is doing. Other than knowing what they are I don’t know how to interpret the numbers.

Hang there. I can imagine how tough it must be for you with a child that young. I keep thinking about our three year old granddaughter Sydney and how terrible that would be. Carol just came back last night from babysitting her in Denver. I couldn’t go with her because I’m depending on my power chair now. She told me that Sydney kept asking for me. Do you have a picture of Dell?

Lori

Anonymous
March 7, 2008 at 1:46 pm

Hi Lori, I’m glad you posted the e-mails between you and your doctor. As far as CD19 (read B-cells) is concerned, there’s nothing to worry about in my opinion. First of all, they were within normal range to begin with, just a little bit on the low side. This probably is due to the Solumedrol which suppresses the immune system. Like your doctor said we actually [U]want[/U] them to go down with Rituxan treatment. Mine are probably down to almost zero 4 months after my treatment. That’s the goal. CD2,CD4,CD8,CD56 are markers on T cells and other immune system cells. They’re probably monitoring them because of the Solumedrol to see how his immune system is doing. Other than knowing what they are I don’t know how to interpret the numbers.

Hang in there. I can imagine how tough it must be for you with a child that young. I keep thinking about our three year old granddaughter Sydney and how terrible that would be. Carol just came back last night from babysitting her in Denver. I couldn’t go with her because I’m depending on my power chair now. She told me that Sydney kept asking for me. Do you have a picture of Dell?

Lori

Anonymous
March 6, 2008 at 2:39 pm

[QUOTE=Dells mom]As the Rituxan was going, the dr. came in. He said he had not received the results from the CD subtypes for the lympocytes. I called and got them faxed to the icu. He said he could not understand the lab results, he was not used to reading that labs numbers. He stated if the CD19 numbers were low, Rituxan probably would not do any good.

I wish we had know this before, if we had seen the numbers, we could have maybe opted not to do Rituxan.
[/QUOTE]

Lori, Rituxan has nothing to do with CD 19. It attaches to the CD 20 marker on B cells. I checked my text again but it is not quite clear on these particular markers. They belong to a group of differentiation markers involved in cell development. When B cells are activated and develop into plasma cells, the ones spitting out millions of antibodies, these markers disappear. The text says that CD 19 [U]or[/U] CD 20 are expressed. That sounds like it’s either one or the other. On the other hand, the blood tests I had done before treatment found monoclonal antibodies with both CD 19 [U]and [/U]CD 20. It’s quite confusing.

Regardless, what your doctor told you does not make a lot of sense to me. Perhaps the assumption is that low CD 19 also means low CD 20, not enough for Rituxan to target.

This might be of interest: in this study of patients who received Rituxan treatment one month after treatment no B cells could be detected in circulation. They started to come back after eight months.

By the way, B cells [U]are[/U] involved in defending against [U]viruses[/U] in circulation – among other intruders. T cells, on the other hand, fight viruses which have invaded our cells. I got this wrong in an earlier post. So be extra careful. The oncologist asked me Monday if i had any indication of the flu. I said “no but there isn’t much you can do about it except wait it out.” He answered “yes there is. You just have to take medication as early as possible.” So if that happens to Dell you should see the doctor right away.

Lori

Anonymous
January 13, 2008 at 12:12 pm

[QUOTE=Dells mom]we are going ahead with the Rituxan in March. We want the cold/flu season as much out of the way as possible.[/QUOTE]

Lori, this is a very good idea. When I reported I came down with a cold and got over it pretty quickly, I celebrated too soon. It came back twice since then more a nuisance than serious. I also had cold sores twice something I have not had in years. Now I am having second thoughts about what I thought I knew about B-cells and virus infections.

Take care.