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Update On Me And Ari


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#1 peanut

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Posted 12 September 2007 - 05:13 PM

Hi Friends,
I just got back from the rheumatologist. The Imuran I've been taking hasn't been doing the job so I have two choices: Cellcept or cyclophosphamide. I've done one round of IV cyclophosphamide(before the Imuran) and it was very successful. It raised my diffusion rate and all my pft numbers. My rheumatologist feels that cellcept although successful doesn't show enough substantial research but is a viable option. I feel like my health is spiraling out of control. In the last 6 months I've been put on oxygen, PH, and disability... I like being home though. I think I'm going to go with cyclophosphamide because I know it will work! I know it's really hard on my body but I feel like I must do something fast!

Now here's the next thought... last time I did cyclophosphamide I had a lupron depot shot which has a 90% rate of preventing me from becoming sterile from the cyclophosphamide. I don't know if it worked and my women's doctor says the only way I'll know if it works is if I get pregnant, which was an option - until I got PH. Pregnancy is highly discouraged with PH. So, if I'm going to do another round of cyclophosphamide do I opt for a lupron shot? Realistically and physically it's looking like having children may not be in the books for me. My husband says if your lung volume is 38% and diffusion rate is 33% it's probably likely I won't be able to take in enough air for me and a baby.

The cyclophosphamide will start soon. Has anyone done multiple rounds of IV cyclophosphamide?? Should I expect the same experience as I had last time or will it be worse? I had very little nausea and some hair loss during my last round but overall it wasn't too bad of an experience.

My rheumatologist also wanted me to find out about the 3rd option: stem cell transplant. He told me to contact Dr. Furst or the local mayo clinic to talk to the leading rheumatologist about it. I called mayo has this pre-evaluation thing where they must run their own tests, blah, blah, blah and my insurance won't cover it. Dr. Furst is currently touring and speaking.

*sigh* it's been a long day.

On a more positive note, Ari has eaten a little more. She too had a vet appt and blood work done - just like me. Hopefully everything with her will come out good.

peanut



You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#2 Sheryl

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Posted 13 September 2007 - 12:58 AM

Peanut, if the Lupron shot prevents you from becoming sterile take it. For the time being you want the option of children in your future. It could really help with the diffusion and PH problems. You may one day be off the Oxygen. Or only use it on occasion. My suggestion is to keep all your options open. People do get better and go into recession. You can't have regrets if you protect yourself now. Sheryl
Strength and Warmth,
Sheryl

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#3 janey

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Posted 13 September 2007 - 02:47 AM

Hey Darlin'.
I'm so sorry to hear they are considering another round of cyclophosphamide, but very glad that your doctor is jumping on this. He has the same feeling that my rheumatologist has about cellcept. Not enough studies. However, because I didn't handle the oral cyclophosphamide, he did agree to put me on cellcept which seems to be working, but a lot slower than cyclophosphamide. His original plan was to have me take the oral cyclophosphamide for a year, then switch me to cellcept. I've seen a couple of studies that have done that. You might be able to find them on our cyclophosphamide page. Also, last night I posted a study that showed that cyclophosphamide is safer when infused than when the oral is used. That I can believe!

In reference to stem cell, you can go to the Scot Trial page and email them directly to see if you are eligible. That's what I did and I got a response within 48 hours. I figured since I had a pacemaker that would knock me out and sure enough - it did. If I remember correctly, you may be ineligible because you've already had a round of cyclophosphamide. Just shoot them off an email and tell them that and ask if your eligible or not. It will save you some time. Also remember, that many of these clinical trials will give you either cyclophosphamide or stem cells and it's not your choice.

I'm glad that Ari is doing better. I know that you will be doing better as well. Sounds like you have a good doctor.

Big, big Hugs,


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#4 LisaBulman

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Posted 13 September 2007 - 03:19 AM

Hi Peanut,
I amm so sorry that you have to make a big decision like this, again! I did 5 months of chemo last year. I went in once a month for an infusion. Every month I was out of it for a couple days but I would lsowly get back into the swing of things. I lost a ton of hair so I just cut it really short. So far my lungs have held steady so it worked for me. If I had to do again, I would.

Please let us know about the trial. I thought most trials will cover your screening costs. You might want to double check on thet.

Hugs,
Lisa
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#5 jefa

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Posted 13 September 2007 - 03:50 AM

Hi, Erin. When I read your post, I got kind of emotional as I do with all of you when you relate going through these major chemical experiences. I honestly don't know how I would handle it myself and it shows what great strength you all have in spite of your illnesses. That you would give so much of your time to help others on top of all the other things you must cope with is amazing. Thanks to all of you for the example you set. Big hugs to each of you.
Warm wishes,
Jefa

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#6 Clementine

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Posted 13 September 2007 - 05:06 AM

Peanut,
Just wanted to tell you I am thinking about you, as always.
I am sorry you are having to make decisions like this and that you are going
through all of these major life changes, at once.
xo
Jen

#7 Sweet

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Posted 13 September 2007 - 05:46 AM

Peanut,

You have a lot on your plate. Big decisions as well. I've never been on cyclophosphamide at this point, so I don't have a lot of advice about side effects. I see Janey gave you a link.

On the other topics of pregnancy etc, I don't know if I would throw the towel in just yet about not being able to have kids. Things can change, you never know.... give yourself some time to think about all of this. Don't make any rush decisions.

Glad Ari is doing better. smile.gif


Warm and gentle hugs,

Pamela
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#8 nan

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Posted 13 September 2007 - 07:41 AM

Peanut,
I am so sorry that you have so much happening at one time. I send a big hug your way. :D I can't give any advice on medication because I don't have any lung issues at this time.
Take Care!
Nan

#9 peanut

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Posted 13 September 2007 - 10:20 AM

Hi Friends,
Thank you all for your thoughts and well wishes. As I go through all this you are dear to my heart. I don't know what I'd do if I didn't have friends who really understand the heart aches of our condition.

I'm so frustrated about this stem cell transplant thing. I've read lots on the internet (thanks Janey!), but I'd love to talk to a real person. In order to talk to the mayo specialist I have to make all these appointments and pay mostly if not all out of pocket. I've emailed Dr. Furst, but we're kind of at an impasse. I don't know about SCOT because I don't want to be a candidate who gets the high dose of cyclophosphamide. I'm much more interested in the stem cell part. I do recall a hospital in Chicago doing a similar study but I don't recall any more specifics. Silly brain I really do wish I could remember stuff.

It looks like despite all odds in the baby department we are in line to do another depot shot. I have to do a bone density test first. Depot may make bones weak so we gotta check that.

Oh so much is going on and it's all so fast. Off to my bone density test,
peanut



You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...

#10 GocartMoz

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Posted 15 September 2007 - 01:53 PM

Hello Peanut,

I have been through the Scot Trial and although I had a difficult time with the stem cell transplant I am on the upswing right now. You are right, however, whether you get the stem cell or the cyclophosphamide arm is totally random. Even with the stem cell arm, you are given cyclophosphamide in addition to total body irradiation to ablate your immune system before building it up again with your own stem cells.

The Chicago study is being done at Northwestern, headed By Dr. Burt. I believe it is called the ASSIST trial. There have been some members on here that have been through that clinical trial as well. In the Northwestern study, if you are chosen for the cyclophosphamide arm and the treatment doesn't work, there is a crossover option which allows for you to get a stem cell transplant. Another difference is that Northwestern does not use total body irradiation in the stem cell transplant procedure.

Good luck with whatever you decide.

Dave in FL



#11 peanut

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Posted 15 September 2007 - 07:32 PM

Dave,
Thank you for your response. It's really the first genuinely clear response I've gotten, so truly I am grateful. I've heard from one doctor and found him to be more rude than helpful. Another's assistants will get back to me next week and the third will be sending me paperwork.

It is frightening to think my doctor has asked me to look into this as a possible treatment, but I am not willing to stop fighting even if I am scared. This is not a super urgent search, I'm simply anxious to fill my brain with everything I can find to make the best possible choice. I'm a bit concerned about insurance. Did your insurance help you out? I wonder how many people have done the stem cell thing with scleroderma. I hope it's more than like 5 or 6... j/k I didn't like the sound of SCOT and with my lung issues it does not sound like its for me. I've also read that one of Northwestern's clinical trials involves stem cells not from one's own body. Humm...

Thank you again,

peanut

You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...