[Reggie]

I am not quite sure where or If I should post this letter, but here goes.

To the moderators please feel freeto move this if it is not in the correct place.

After another 2 weeks in hospital, the only thing that is helping me is methaprednisone, 1000mg at a time IV and 50my orally. For those of you that may remember I have had 2 rounds or rituxan that have been unsuccessful. In addtion to this endless cylco, pred etc.....over the last year and a half........I have CNS Lupus -I am losing eye sight, cognition, balance, coordination, and now my hearing!!!

All of Doctors agree now the only thing left that might work is a stem cell transplant or bone marrow transplant. I am still feeling numb, I have no more tears left to cry, uh oh here they come. I feel I am now totally on my own know. I cant ask anyone else here for advise because I asume no one knows what will happen, the effects or if it will help me.

All I know is that I have two beautiful boys aged 7 and 5, a wonderful husband who is only just holding up himself and I am determined to be around for them.

the next few weeks and even months are going to be scary so please excuse my posts I expect I will have to VENT some where, hopefully to to some wonderful people on this site.

take one day at a time
Peta:wink2:

 

[Clare.T]

Dear ((((((((((((((((Peta )))))))))))))))

We are all very sorry to hear about the Rituxan failure and the challenge of stem cell transplant treatment that lies ahead. You are most welcome to let us know what you are going through and we hope you will be strengthened by the support and prayers of our community here. We'll do everything we can to help you and your family through this.

Several years ago Kathy Hammons, who was the fourth person to have stem cell transplant at North Western, participated in an e-list I was also a member of. The treatment was successful and she went into remission. The last I heard she was anticipating surgery to repair the damage caused by the lupus and medication, to joints if I remember correctly. Before SCT the surgery would have been out of the question because she was so weak.

Kathy features in an LFA Lupus Awareness video - you will see how wonderful and well she looks these days.

http://www.youtube.com/watch?v=BI4z30nfv6k&feature=related

I followed another successful stem cell translant story on a now defunct forum
We will be honoured to share your journey with you.

Your husband is welcome to post your news here for you, if you wish - just contact the moderators first please, to set it up.

All the best to you and your family

Clare

 

[BigSis]

(((((((Peta))))))
I am so sorry the Rituxan hasnt worked for you.

Know that our thoughts and very best wishes are with you through whatever path you have to follow next.

Thanks to Clare too. it is encouraging to all of us to know that even the most difficult aspects of this disease can be beaten and things are rarely hopeless.

Wishing you some peace at this time

 

[sam101360]

(((Petal))) We will all be here to support you, please do keep us informed or have your wonderful husband do so for you if you are unable.

My thoughts and prayers will be with you as you take this journey into the unknown.

Each journey begins with a first step, know that your friends walk with you!

Love Stephanie

 

[neongirl]

(((((((((Peta))))))))
I'm so sorry you are in this predicament, but, I am hopefull that your stem cell transplant will do wonders for you. As Stephanie said, many of us will be walking with you. I know for a while, you will have to limit your contact with the "outside" world so to speak. During that time, maybe you could close your eyes and picture us all there in your room with you:hugbetter:

 

[Katharine]

Hello Peta,

I'm sorry to hear that all that treatment so far has been unsuccessful. I will be praying for you and keeping you in my thoughts.

I will join in that walk along with the others,
hugs :grouphug2: and the very best of wishes to you,

Katharine

 

[lazylegs]

Hi Peta,

I can't even big to imagine what you are going through. Just know that we are here for you. My thoughts will be with you and your family.

It would be appreciated if you would keep us posted. Those of us on Rituxan are always looking at whatever else is out there for the future.

Take care,
Lazylegs

 

[cmfinnis]

Hi Peta,

I am sorry to hear how unwell you are and that the Rituxan has not worked. I can't imagine how you must be feeling about all this at the moment.

I hope the stem cell transplant goes well for you. Please vent away!

My lupus has been hard to get into any kind of remission and I have CNS lupus too. Unfortunately I also have CVID which means I have low immunoglobulins, which means I can't even attempt Rituxan . . . . so I am offered IVIG - I am just wondering whether you have tried this - or whether you have asked your docs about it. It's not a common treatment but can be used in resistant cases. Tommies has pioneered it's use in lupus and it has been used in quite a few cases. Just a thought - or even as a stop-gap before the stem cell transplant?

Take care
Cathy x

 

[Reggie]

Thank you to everyone who has sent their support and prayers to me and my family. It means so much to know you are all there. To day is a better day and I am feeling happier.

Once again thank you sooooo much
Peta

 

[keebler]

Dear Peta,

I to want to lend you my support to you and your family.:grouphug2:
My thoughts and prayers are with you.

Take care,
Lyn

 

[Zoi]

((((((((((((Peta))))))))))))))

I'm really sorry to hear about this latest turn of events.....

I can't even begin to imagine what you must be feeling and what you must be going through at the moment... :hugbetter:

I have been diagnosed with cns lupus and aps and both diseases have been nearly impossible to control with any meds for almost two years now. I've gone through pretty much everything you've gone through med-wise, from imuran, to cellcept, to cytoxan, tons of iv steroids, to rituxan, to another more experimental med and more iv steroids, to ivig; no med has ever worked... The only thing that has ever consistently worked for me is plasmapheresis; it is the only thing that has managed to stop this thing in its tracks a couple of times, even if for a little while.

An autologous stem cell transplant and/or a bone marrow transplant from a donor has been discussed in my case once or twice and if plasmapheresis hadn't worked I'm pretty sure I would have had to go through with it. Even when it was only discussed it sounded scary as it was a new treatment with a lot of unknowns but hopeful; very, very hopeful and with some very positive results!

Cathy's idea about the IVIG is very good; you might want to ask your docs about the plasmapheresis too if these are not things you've had already and that haven't worked...? This is just a thought of course...

My thoughts are with you and your family at this very difficult time...

I hope everything goes well with your new treatment and that you feel much better very soon... :grouphug2::grhug:

Zoi

 

[specialk16]

Peta sorry that the Rituxan isn't working for you.... I pray that the doctors can get it figured out for you soon!

Love and Hugs!

 

[Joandublin]

Dear Peta

Im so sorry that your treatments havent worked for you. Like everyone else I just wanted to stop by to let you know that you are in my thoughts as you face the difficult times ahead. You have such a young family and I hope you will be around for a long time to come to enjoy them.

I would be honoured to share in your journey with these treatments even if all I can do is offer support and friendship. Please vent away any time you want.

Much love and strength
Joan:rose:

 

[cad]

Dear Peta,
I am so very sorry you are having such a bad time.

:grhug:​

I really wish you all the best and am sending lots of goosd wishes your way.

Take Good Care

Cassie

 

[confused1]

((( Peta ))) I want to send prayers and good wishes and offer support for the journey you are taking. I've read good things about SCT. We are in an exciting time when new treatments are being found all the time.

Please tell your husband we will keep him in our thoughts and prayers during this difficult time.

Hugs,
Sunny

 

[pennylp]

HI Peta,

My heart and prayers goes out to you... I am so sorry you are going through this...They can do so much today so please go into this with a positive attitude... I really know what I am saying with this.. I beleive that my attitude is what is helping me get through what I have....
I have had nineteen treatments of retuxan so far...Plus different chemos... I have Lupus, RA, and non hodgkins lymphoma... My treatments with retuxan is for the cancer, but I am being helped with my other illness... The doctor did tell me if all this fails I will have to have stem cell transplant... So I know the fear that comes with that... I have a friend who's sister in law had stem cell transplant two years ago and is doing very well...
I can tell by the way you talk that you are a vary strong and brave person... Stay strong.... YOu have a lot of people on this site who are going to be praying for your quick recovery...And then you can chase those two wonderful children around the house...

Prayers and love
Penny