Update on Kimberly's Chemo

Sorry we haven't been posting, but we've been cautiously anticipating each week's numbers, and not wanting to jinx anything.

So here's where things stand now. It's been two months since her last dose of Cytoxan. Every week for the last six months Kimberly has had a CBC. Her low was 6000., and remember she had a brain hemridge four months ago. Again remember Kimberly has tried every drug you can imagine in her treatment plan. None have given her a sustained acceptable platelet level. Strong chemo therapy like Cytoxan is a last resort drug.

In Kimberly's case by all accounts it's showing to be a winner. Since her last dose 8 week ago her platelets have not been below 250K and have been as high as 450K. Her HMG and white count are holding perfectly, and we are beginning to silently say the remission.
:woohoo:

This is the one drug I have not taken/tried so I would be interested to know about any side effects experienced?

My Haematologist has suggested taking it but I have been put off by the potential side effect of bladder cancer. He insists the dose required for ITP is small and unlikely to cause any issues in that regard.

I have come to a bit of an impass with my ITP as even IVIG in large amounts is rarely getting me into double figures (count of 2 before last infusion).

That is excellent news.

It seemed to be so very, very effective for her, one has to wonder. Even if she did relapse the previously failed drugs may suddenly become effective now and are able to knock it back into remission...

As far as side effects, she has had the obvious one's. Nausea, she threw-up for a solid weeek after both doses. The nausea was the least of it. The chemo destroyed her white count requiring rescue with what is referred to as growth factors. The first one was neupegen. Daily injections till her counts came up. It stimulates the bone marrow to over produce white cells. This caused extreme deep throbbing bone pain. Even 8 mg dilada wouldn't touch it. This lasted three days. Now Kimberly was still dealing with her brain bleed issues which gave her pretty strong migraines. The neuratin seemed to take the edge off of those.
The second dose of chemo was followed by lunesta. Same extreme bone pain and the ever present nausea. The zophran didn't work, but there was another nausea drug that seemed to help somewhat, don't remember what it was.
Then there was the hair loss. Before the chemo Kimberly had shoulder length beautiful thick hair. She started to loose it by the hand fulls, so she decided to cut it to a pixie cut, thinking it would fall out less. So far she's ended with bald spots and extremely thin hair. Positive note, she's just started Rogain, after a family friend showed great results.

With Kimberly's counts holding at great levels now, she's gone back to work part time at the NICU. Short shifts due to the painful clots in her abdomin and legs, but she's back doing what she loves, saving and taking care of the thinnest babies you can imagine.

It's only been two months and she's still tappering off the steroids, so no other side effects that wern't expected have shown up. We're praying nothing does.

That sounds like a particularly harrowing journey to better counts. I'm so happy to hear that things are going well after all of the difficulties with treatment. Congratulations on her return to work! NICU nurses are the best. All 3 of my boys spent some time in the NICU because of my ITP, and we had great experiences.

Hope things keep moving upwards and onwards for you!

Did Kimberley have large infusions or just tablets?

Quite a ride she has been on!

She truly deserves a long break! That was one heck of a ride!

She got weekly IV infusions