Great news, Tom!! So glad to see Christina is doing better.

Debbie

Excellent news Tom! Thanks for the update!

Tom -- this is GREAT!!! Are they thinking that it was the ASP2215 that accounts for her success? This is the answer to our prayers -- let us be sure to give God that thanks and the glory. Please keep us up on how things go, and we will continue to pray for Christian -- daveB

Thank you all for the positive thoughts and prayers! Christina's bone marrow biopsy came back blast free and 100% donor chimerism! She is still on Nexavar 2x's a day and it seems to be working. She is having difficulty with keeping weight on, she has lost 18 pounds in about 8 weeks and is down to a very thin 115. Her platelets continue a slow downward trend and they are now at 38. Her neutrophils have stabilized a bit but are very low at 43, and her liver function labs have been going in the wrong direction, so any positive thoughts and prayers concerning those things would be much appreciated. Also her heart rate at rest is usually around 100 which is quite high for her historically. Has anyone else had experience with the higher heart rate?

Thanks again for all of the support!
Tom

Dave,
The team concluded that the asp2215 was the culprit for her PRES and coma, but that she was the only one in the study that experienced those side effects. They have not stated anything about whether or not it was responsible for her remission.

Awesome news, praying for her numbers to take an upward turn. Her strength and overall grit will get her through this, with a little help from the lord. Thanks for the update.
DaveJ

Hi Tom,

I "normally" had a resting heart rate of 60-70, and I found that after transplant it does fluctuate higher, sometimes in the 100s. A lot of times it has to do with my Hemo level. If it's low, the heart races. But yes, my heart rate is typically a little higher now (7 months post transplant).

For the liver, drink, drink, drink. As much water as she can. I add lemon juice too, processed from the bottle, no fresh. I read about all kinds of benefits are added with put lemon juice in your water.

I also had slightly elevated kidney function and low magnesium (which I take Rx supplements for). I take warm baths in epsom salts too. It's supposed to increase your mag and draw out toxins (possibly from liver and kidneys). Who knows. Its relaxing and nice though.

I hope this helps!
Lora

Praising God for answered prayers. I will continue to pray for full recovery of health

Julie

Tom, that is fantastic news! So happy to hear it.
I was on Sorafenib for several months, and during that time my platelet and neutrophil counts were quite low too. My liver function tests also got worse. We suspected the Sorafenib was contributing to a lot of these changes. We brought the dose down a notch, but I ultimately had to stop it, after developing nephrotic syndrome (large amounts of protein leaking from the kidneys into the urine). This is a rare side effect of the drug though.
Since the transplant my resting heart rate has been high too. Initially 100-110 for 1-2 years. Now it's about 85-100. I don't think its uncommon for this to occur. Given all your wife has been through, she has probably deconditioned a bit, which can cause the baseline heart rate to increase. So long as she's not symptomatic or unwell with it it's probably to be expected. Hope that helps. May your wife get stronger everyday & another step closer to full health xx

It is so good to hear that Christina is doing much better. I know that you guys were having such a tough time a few months ago. Thank you so much for the update and pray that all will continue to go well.