Day 57 Update

Hi all,



Now don't everybody fall off your chairs.....yes I'm back and not even a week has passed, but this has been a crazy week and I wanted to let you all know in a quick post. I didn't mention last time, but on Monday our NP drew extra tubes of blood b/c Bobs' CMV titer was slightly elevated, but they are using a new method in the lab and weren't sure what it meant. Well, we got a call Tuesday afternoon that the CMV level, which is a viral titer was highly positive and now Bob is on an IV drug at home called gancyclovir. It is the IV form of the anti-viral drug acyclovir that is used for shingles. So Tuesday afternoon was spent on the phone getting all the supplies and home nurse set up(you can't believe how complicated things can be made). On Wed. Bobs' Penn home nurse Kathy came out, on her day off I might add(thank you Kathy), and did the first dose and I have been giving them since, 2x/day. On Thursday we made our trip to HUP for Bobs' 5th dose of enbrel and we were in and out in 45 mins. Praise the Lord! We ran to the market on our way home and were back before 1p. We were both so happy it went so smoothly, and then of course there was a message from our NP Michelle that Bobs' platelets had dropped to 19K!!!! and he was going to need an infusion before the weekend. I think they dropped even further b/c that night Bob had a nosebleed, which has never happened before. So Thursday afternoon we ran to CMMC for a T&C(type & crossmatch) and yesterday Bob got the platelets there. Michelle in her message said "I'm not going to make you come back down here now", meaning back to HUP.......as if she could!!!!!! Actually I suppose they really could and I shouldn't taunt the platelet Gods, since our pal Deb T. is not allowed to get her transfusions locally. And she has needed many since starting on her clinical trial of vidaza and mystery drug X, but I should also tell you that her last bone marrow didn't show any leukemia cells, so that is very good, promising news. Hang in there Deb!



So that was our week. On the lighter side we did get out Tuesday evening to Debs' for a birthday celebration of our other friend Beverly. And Wednesday evening we spent w/ our games crew. Both were great, fun times, but Bob has been very fatigued since than and is laying low today. He is so tired and still has trouble sleeping at night from the prednisone. His sugars have also increased, probably from the viral infection, and he has had to increase the insulin.........but if anybody knows what to do about blood sugars, it is Bob, as many of you,his patients know. Thanks for the blogs.....Glo, it was so great to hear from you. I sent you an e-mail.....hope your address hasn't changed. Thanks also for the continued calls, cards and prayers you send to Bob. It means a lot to us both.



Enjoy this beautiful weekend.....we have the house open and the air off, and I'm loving these breezes. Take care.



All our love,

Bob and Mo

Day 53 Update

Hi all,

Bob's doing well, although now he has steroid-induced diabetes from the high dose prednisone he's been on. He's got a kit and is checking his sugars every morning and giving himself lantus insulin in the evening. This should just be a temporary thing, and hopefully will stop after the prednisone is done. Unfortunately it's going to take at least another month to taper the prednisone off, since he was on such a high dose. Other than that things are pretty stable....the rash is better, and Dr. L. still thinks he's doing well. The white count and platelets did drop somewhat from the additional drugs, but not enough to warrant transfusions, and his hgb was up to 15.1 yesterday. We are on a schedule of traveling to Penn on Mon. and Thursdays, which generally becomes an all day adventure. Left yesterday at 9a and didn't get home until close to 3p. And I think CVS is going to create a drive-up lane just for us. Today is the first day out of the last 4 that I haven't had to drop off or pickup a prescription. Ah, but Bob just reminded me we need to go tomorrow for prednisone and insulin. So, our 2nd home away from home.

Thanks to all who continue to write....and here I must single out Mary Day. We were looking for your boys at the home-run derby and the all-star game. And of course I remember our lunch at Mondavi and our stops at the other wineries too. I use the one t-shirt I bought as a dust rag now. That was a great trip. Bob says thanks to all for the cards and e-mails(esp. Linda S). I've been nagging him about writing, and hopefully he will be on here soon. We both appreciate your prayers and concern.

Hope everyone's having a good summer. Stay cool and safe.

All our love,
Bob and Mo

Day 41 A Belated Happy 4th of July

Hi everyone,



Gosh, I really lost track of the time. Didn't realize it's been so long. Well, things have been hopping. We've had several extra trips to HUP and will now be going twice a week, as Bob is in the throes of the skin reaction component of GVHD. He has developed quite a rash, especially on his back and chest. If you just look at his face, he's so pink you'd call him the picture of health..........although that's not all rash, as his hemoglobin(hgb) is now up to 13.0..........I don't think mine is even 13.0. At any rate he started on steroids on Monday-----100 mg of prednisone twice a day--yes that is not a typo. I know all you medical types out there will know this is a huge dose. Needless to say, Bob has a whopping appetite and his knees are feeling better. Unfortunately he is already having trouble sleeping despite taking a sleeping pill. And today he started a second drug, also an immunosuppresant, called enbrel(used also for rheumatoid arthritis). We have to go to HUP for this twice a week since it is being given as part of a clinical trial. There were four different drugs that Bob could've been placed on....they are chosen randomly by a computer......2 were IV, one was oral and enbrel is given by subcu. injection(here comes the sore belly again). They all had their advantages and disadvantages. I think we got the better deal w/ this though. The idea is at any rate to nip this GVHD in the bud. The skin reaction can get much worse w/ blistering and 3rd degree burns, and it can also affect the intestine and liver(we won't go there), so we're praying that these drugs do the trick. In the meantime we are stepping up the neutropenic precautions as Bobs counts are probably going to fall from both these drugs, and he may need blood and platelet transfusions......bumps in the road, that's all these are.



Luckily we were able to get out yesterday and had a very enjoyable 4th w/ our "games" crew over at our friends' Lee and Yvonne A. Bob had a great time......it was his first time out, other than HUP and riding in the car.....and he managed to stay out for 4 hrs. I'm sure that was thanks to the "roids", but we'll take it. Oh, and he cleaned up at Texas Hold 'Em, which he called beginners luck, since it's been so long since he played. So thank you Y and L, you are always great hosts.



We also had a minor scare last week when Bob had a CMV level come back positive......that's a blood test to check for cytomegalovirus, which can crop up in pts. who are immunosuppressed. So we trekked down again for another level and an IV dose of acyclovir(anti-viral med). But thank God the second level was negative, so we narrowly escaped 12 days of IV acyclovir at home, but at least I would have been able to administer that.



So Bob's been watching a lot of baseball still, but now tennis is thrown into the mix(oooh I'm so mad Serena lost to that weasel Henin, but at least Venus rolls on). He's also still reading and has contemplated getting back to his computer games......which is a great barometer for me that he feels stronger, b/c I know Bob is really tired when he can't manage a World of Warcraft session. And if I see him at the computer, you can be sure I will be nagging him about a post. So thank you everyone for your continued support, blogs, prayers and cards, even when I am so delinquent. And thank you too for asking about my parents, who are doing pretty well right now. My brother Tom and niece Kate were up this past weekend for a Noon/e family reunion. Noon is my maiden name, but some of my Fathers' family spell it w/ an e on the end. In fact there was another Maureen Noone in my high school class and we were known as w/ and w/o the e. But I digress(which is why it takes me so GD long to write these things). So the reunion was a huge success, and I am so jealous that I missed it. Family members from far and wide that I haven't seen in years, so Congrats to my cousins who organized the whole thing, Margi, Sharon and Susanne. You did a great job and Bob and I will be at the next one.



Well, I must go. Mucho thanks again. We do appreciate all your concern. And enjoy this hot, hot weekend coming up.



All our love,

Bob and Mo