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Update, Kimberly's current cytoxan treatment results

  • A Clow
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  • I am a father a three children. My wife and I have already lost one child to ITP in 1995. Our youngest Kimberly now 35, has chronic ITP with a hyper coagulation condition as well.
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8 years 10 months ago #58629 by A Clow
Sorry I've not posted recently, but here we go.

As a review, Kimberly received three doses of Cytoxan August of 2016. After having tried every available treatment and having developed a clotting issue ( read previous posts, most recent was a serious brain hemridge ) as well as a platelet problem, her Dr. suggests chemo therapy. So August 2016 she gets three hearty doses of Cytoxan, followed by both first nuepegen and then lunesta.
So now the results, three weeks post chemo, her numbers shy rocketed to 212,000. She was still on a tapering dose of prednisone, but each weeks CBC showed numbers in the 200's. Over the next few months she would enjoy high platelet numbers, but now had a small reacurring issue with low HEMO numbers ( low 7's but once 5.2 ) Requiring iron infusions about every six weeks. Still on a small dose of Prednisone only because of withdrawal issue, but still tapering, but slower.
She did have a couple of weeks where her platelets dropped back to the 60's, but soon shot back up to the 200's.
Seems that in her case, unlike most others, the Cytoxan has been a success. Just wish it would have addressed the clotting problem as well. She still requires nightly injections of arixtra along with numerous other med's and weekly CBC's but hey, at this point She's good and has even returned to work on a part time basis when all of her numbers allow.
Things are GOOD!

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  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 10 months ago #58634 by Sandi
I'm so happy to hear that! You guys have had such a difficult time!

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  • A Clow
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  • I am a father a three children. My wife and I have already lost one child to ITP in 1995. Our youngest Kimberly now 35, has chronic ITP with a hyper coagulation condition as well.
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8 years 10 months ago #58636 by A Clow
Thanks Sandi i appreciate the kind words. I remember you had said you had never seen anyone respond well to cytoxan. I'm happpy to say Kimberly is the first.
I was a little apprehensive to post her results given chemo is such a last result treatment and I didn't want to encourage members to jump to the idea it wight be a treatment for them when there's so much to try first.
The Venafer she receives for the low HEMO is nothing but a bandaid, hopefully we can find the cause for it's need and correct it. Then all she has to deal with is the clotting which seems as long as the Arixtra is on board, she's good.
Thanks again for the kind words.

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 10 months ago #58639 by Hal9000
A Clow, your daughter is very brave.

Gosh, when I read the Wiki article on Cytoxan/Cyclophosphamide it scares the pooh out of me. Really powerful, scary stuff. I guess the dose is little weaker for ITP patients. Not sure.

I found a pretty comprehensive list of ITP treatments here: ITP Handbook . In the 'Toxicities' column of Table 6 for Cytoxan it says: 'neutropenia, acute deep venous thrombosis, nausea, vomiting'. Didn't Kimberly experience all of those symptoms? Or, did she escape the thrombosis?

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  • A Clow
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  • I am a father a three children. My wife and I have already lost one child to ITP in 1995. Our youngest Kimberly now 35, has chronic ITP with a hyper coagulation condition as well.
More
8 years 10 months ago #58642 by A Clow
No she didn't escape, but it was not due to the Cytoxan. Several years ago she had a failed spleenectomy which resulted in a portal vein thrombosis requiring a TIPS procedure. Since then she's needed no less than twenty IVR procedures to clear clots. The cloths were everywhere, abdomin, knees even one requiring a bowl resection. The most recent was in her neck causing brain hemridge.
And yes before you ask, she did have esophogeal varisices requiring three banding procedures.

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