Owen was admitted to Brigham & Women's Hospital yesterday, had his catheter inserted and started his chemo today. I'm worried because his hct dropped substantially (pre-chemo) and he's getting 2 units of blood today. His other counts are all good but it's hard not to worry since he's been off sorafenib for 2 weeks now, and had used a lot less of it the couple of weeks before that. The doc didn't want to do a bone marrow since blasts in the marrow wouldn't change things at this stage. Not much we can do about it now, as the doc said sorafenib wouldn't be administered with the other transplant chemo drugs due to interactions. At least Dr. C is willing to have Owen resume the sorafenib post-transplant.
So far we're very happy with the decision to get Owen's care from DF and BWH. He finds the the docs and nurses are a little more relaxed than in NYC but I guess everywhere is more relaxed than NYC. Owen wants his lap-top back so I'll be brief today but will post again soon.
Cathy, my fingers are crossed for you guys! It sounds like Owen feels comfortable with his docs and hospital, and that's important. They might appear more relaxed but I'm sure they will be vigilant in looking after anything that comes up for him. Hope he gets through the chemo OK, and day zero is coming up soon! Keep us posted.
Even if there were a relapse, this chemo he's going through should kill it off. But one never knows what causes a drop in counts without the BMB. That the doc said the plan would remain unchanged in any case, just assume that's a positive thing and try the best you can to relax.
I'm very glad ya'll are feeling comfortable with your decision to go with DF. Having confidence and being comfortable in your surroundings is important.
I'll be looking for your updates. Give Owen my best and tell him to keep kicking.
So glad that the transplant is underway. Don't worry about whether there are a few blasts remaining, they'll get it with the chemo and transplant.
It's great that you're already feeling comfortable at Brigham & Women's. When my daughter was there for her transplant, we found that they had an incredibly efficient and well oiled system at DF. The nurses and docs had so many years of experience in a tightly run program that everything ran smoothly--and relaxed.
Hope the transplant is boring, with a rapid recovery for Owen. Let us know how he progresses.
Thanks for all the good thoughts and wishes. So far so good; Owen has just one more day of chemo. His transplant date is the 20th, and right now he's on target to be discharged on the 22nd. This is definitely not as severe as the first transplant and if Owen hadn't gone into it with all the sorafenib side effects I think he'd be feeling pretty well. But he's managing to eat, and he limps around the hall on his swollen feet a couple of times a day just to keep moving.
We were supposed to move into the Hope Lodge in Boston upon his discharge but there was some miscommunication between DF and HL so right now it looks like he'll be discharged back to the hotel where I'm staying. I'm a little worried to say the least; preparing meals for a transplant patient is challenging and with just a mini-fridge and microwave it's a challenge I'd rather not face. The discharge nurse coordinator has been great and is trying to get us into HL so we'll see. There are hotels with kitchens so we can always do that if necessary. Anyway, Friday is days away and I've learned things can change a lot in a few days.
In case Hope Lodge doesn't work out, my daughter and I stayed at the Summerfield Suites in Waltham after her transplant. It was a little farther--about 14 miles--but very comfortable and well equipped. They have 1 and 2 bedroom units with a fully equipped kitchen and laundry facilities on-site. The hotel was quiet and not crowded, so she felt comfortable walking in the halls to get her exercise (especially during the cold winter months). Since we were there, Hyatt took it over and completely renovated the hotel, so it must be even nicer now. Prices are reasonable and you may be able to get a DF rate.
Owen seems so driven, walking even when it must be so uncomfortable. Great attitude to go into transplant with; I know he'll do well.
Thanks so much for the info on Summerfield Suites. I'll definitely check that out as a resource. The Hampton Inn is quite nice, but this weekend they had a huge group of children staying for a sports tournament. Not only was it noisy, but all I could think of were the germs! A quieter, less trafficked place sounds good.
Still finding it amazing they're turning him out in just two days. But if they think it will work, it sounds good to me.
You know, push come to shove you can get him meals out for a few days. Just be sure it's all cooked. No salads, no garnish, no nothing of that sort. Meat and vegetables need to be well cooked. But there's a good chance he wont' have an appetite for awhile, so you might be able to dodge all that with some shakes.
Glad things are progressing as they should be. Please keep us updated.
Owen received his new stem cells today, a day later than expected, as they were flown in late last night, we don't know from where. So far so good with everything. His kidney function is slightly off and if it creeps higher the doc might switch his anti-GVH meds but otherwise he's doing well. As we had hoped, once he was started on the GVH meds the immune reaction he had to the sorafenib began to improve. He's lost about 20 lbs of water weight in the last week! Now I'm shocked again by how thin he is (back in the 130's) but it's a big relief for him to be rid of all that fluid. A physical therapist has been working with him to stretch the back of his calves and help straighten his arms since his arms and legs were contracted for so long by all that swelling. He's making great progress, and his walk is getting back to normal, especially now that he can fit into his sneakers again. He's taking the anti-nausea meds as recommended is able to eat pretty well, much better than after his first transplant.
So he's still on track to be discharged tomorrow and we're waiting to be taught how to flush his catheter. I've got all his discharge meds, a 10 day supply of neupogen in the mini-fridge at the hotel, and they've arranged for a visiting nurse to administer the neupogen at the beginning. We have both been very impressed with the wonderful care at Brigham & Women's/DF. The whole process has been very smooth and they've anticipated all of Owen's needs after discharge. I do get a little fearful, realizing that we'll be on our own so soon, but they'll be just a phone call away and a quick ride back if necessary. Owen's counts are continuing to drop but he's not even neutropenic yet, and his platelets are still in the 200's. This will all change, and we'll be coming back to clinic frequently for the next few weeks for monitoring, blood products, med adjustments, etc.
So all that's left to do for today is pray that this is the treatment that does it for him. And if he has to go back on the sorafenib I hope his new immune system reacts better than his old one!
Yes, his GVH prophylaxis includes Prograf (tacrolimus) and Rapamune (sirolimus). His kidney counts were a tad high yesterday and if they continue to rise Owen might be switched to Cellcept for GVH. Waiting for the team to come by and let us know, but the nurse this morning said he's on target for discharge later this afternoon. He can't wait for a chance to sleep through the night!
I am with Tex on the amazement of a discharge so quickly. They must have a really solid transplant program and outpatient support program. That is impressive. I would be nervous if I were you, but I am sure they would not let a transplant patient go out if they had any concern that the care could not be managed. I thought I remembered that Owen had his first transplant at MSKCC. That is where my husband Brad has his transplant. We live in Florida, and I can tell you that there is nothing about NYC that holds any charm for me any longer. We were up there for 9 months in all with the chemo and the transplant. I will tell you, I had thoughts of beating that "Newspapuh" guy to death with a stack of his newspapers after so many months of hearing that every morning!!!! I will be thinking of you both. I somehow think that Owen and Brad were on the 8th floor at MSKCC at the same time. Brad's transplant was Aug. 2008. He was not discharged from inpatient until Oct. 2008. Were you there then? chris
I, too, can't believe he'll be out so soon! Wow. I gotta be honest, I needed that pain pump and IV drugs (because I couldn't swallow even water, let alone pills) about 10 days post-transplant. Hopefully Owen avoids all that stuff, some folks do.
My transplant was delayed about 18 hours. My hospital told me that the courier had attempted to get on the plane with the shipment, and because it was marked "Biohazard" they would not let him get on. Can you believe this? How long have organs for transplant been shipped this way? I guess some airline reps had just fallen off the turnip truck. Anyway, it was delayed less than a day---wonder if that's what happened to Owen's shipment, too...
Glad things are going well so far, keep us posted!
There is a huge difference between this mini-transplant and the fully ablative one Owen had at Sloan, just as the doctor predicted. Chris, Owen was at Sloan throughout March and part of April in 2008 so he missed Brad's stay. I have to say, I was pretty nervous about Owen getting out the day after he got his new cells but so far, so good. His kidney function is ok so he's able to stay on the Prograf and Rapamune for now. DF and BWH anticipate just about everything the patient will need and have done an amazing job getting all the services in place. Owen's discharge meds were ordered the day after he was admitted and I picked them up while he was still in the hospital. Owen was discharged on Friday, a visiting nurse checked on him on Saturday and this morning, he had a clinic visit to get his 2nd dose of Methotrexate for GVH prophylaxis. Tomorrow the VN will stop by again, and we go back to clinic on Tuesday and Wednesday. I was taught how to flush his catheter as that had to be left in for meds/blood draws for a while. And Owen gives himself a daily Neupogen shot to increase his wbc until his doc says to stop. Though this has been incredibly quick, one of the nurses at BWH said that a hospital where she worked in Florida did mini-transplants on an outpatient basis!
Owen is tired, naturally, and has to rest a lot but he's able to eat pretty well and we found out at clinic that he regained a couple of pounds. Dr. C had said that with the minimal dose of chemo he wouldn't suffer from GI symptoms or mouth sores and it's really been true. Owen's counts are continuing to fall as expected and he'll probably need some packed rbc's and platelets later this week but today he got a pass. Each day he puts on his mask and gloves and we walk back and forth in the hotel hallway which is nice and long and empty during the day. I got my courage up this morning to drive in Boston since his clinic appointment was very early and I knew there wouldn't be much traffic. Now that I've done it I'll have to take Owen out for some drives as he needs to get out of the hotel room now and then. We still have close to 2 weeks before we can get into Hope Lodge, but the staff at the Hampton Inn have been great and I've met several other caretakers here which has been good for me. I plan to buy a mini-crockpot tomorrow so that I can make more interesting meals but we're managing better than I expected since Owen's appetite is so good.
We appreciate all of your thoughts and prayers. I'm hoping that everything stays on track just as it's going.
I'm glad Owen is doing so well. I too was amazed at how smoothly they run things at DFCI/B&W's. It certainly lessens the stress of the whole ordeal. I will be at clinic on Tuesday, Feb. 2 around 10 am. If you'll be there that day, send me an email (it's in my profile) and maybe we can meet.
This transplant is much easier physically, so far, but emotionally it is a challenge. Sometimes I'm just so tired of illness and treatment and I want to go back to the way life used to be. But I know it doesn't work that way. I'm lucky to have a very supportive family and friends - my sister and brother have already visited us and that helps a lot since we're far away from home and stuck in a hotel room. So far we only leave for medical appointments or I leave briefly to go to the grocery store. If Owen and I can survive this much togetherness than I think we can make it through another 28 years of married life! I think I have to get my courage up and drive us around Boston a little more so that we don't go stir crazy. Owen has seven brothers but many of them don't have the financial ability to take time off from work, although a few of them could afford to but haven't visited. I guess they don't realize how isolating leukemia and treatment is for the patient. His parents are in their 80's and didn't visit at Sloan so I don't expect them to make it here.
It's a relief to have the boards to come to; I try to keep a realistic but positive tone for our boys' sake but of course, there are times when I don't feel very positive.
Truly, Owen is doing very well right now, I guess I'm just afraid of what's ahead - we hope for manageable GVH but don't know what to expect. I have to rally and find my determination; I'm sure I will. If we're able to return home in a couple of weeks as planned that will help a lot.
You do get worn down, especially when you're on transplant #2. If you don't want to drive around Boston (don't blame you), maybe you can go on an outing outside the city. A drive to the beach perhaps, or one of the many historic sites in the area? A change of scenery will be good for you both. It seems like Owen is doing really well--cross the gvhd bridge when you come to it.
Cathy, the weariness of the journey really comes through your words. You are so right there just isn't a way to explain it to those who haven't traveled the same road. Just wanted to add my voice to the many who do understand the toll. My prayers are with you and your family - Marianne
Sometimes I'm just so tired of illness and treatment and I want to go back to the way life used to be. But I know it doesn't work that way.
No, it doesn't work that way. But there's no law against dreaming. I just hope you're taking care of yourself. Owen's going to need you for the long haul...again.
I understand what you said about a lot of togetherness. My wife and I were sown together at the hip. It finally got to point I called our oldest boy and his wife to come up and take her around town so I could have a few moments of peace and she could get some recreation outside of my limited travel area. And I knew she needed some time away from me and my 'rhoid rage even thought she'd never admit it.
Take care of yourself.
secondtimeround wrote:Sometimes I'm just so tired of illness and treatment and I want to go back to the way life used to be. But I know it doesn't work that way.
Cathy, I know so well what you are feeling! I know that probably we never will come back to our "old" life , but we must to have dream and hope that we will have "new" normal life, perphaps il will be better one. I am no post very much recently, but follow you thread carefully, and I wish Owen ( an you) speedy and uneventfull recovery. You both in my toughts and prayers! Take care Marta
Cathy, the GVH is kind of a mystery to me, why some get so much, some just enough to get the GVL effect, and some not at all. So think positive, GVH may not necessarily be in Owen's future, or it will be just a helpful, manageable amount. I know what you mean about going a little stir crazy---Boston is such an historic old city, as PJ said, maybe you can take some drives to visit some of the sights. I used to visit Boston as a kid growing up in upstate NY and have vivid memories of places there. I think you are exactly on point about Owen's siblings, they probably honestly don't realize the isolation of this experience, and aren't sure when to "butt in" and visit, and maybe thinking they might bring germs, or intrude on his recovery in some way. They don't realize that everyday chatter and mundane life stuff is often what you guys want to hear. I remember craving phone conversation about my sister's life (she was several states away): her kids, her job, the neighborhood news, etc.---anything but leukemia. Sometimes you just want that sense of normalcy!
Glad the news is good, though.
Owen continues to do well (I knock on wood every time I say or write this). He's on Day +14 and yesterday was spent in clinic receiving 2 units of red blood, platelets and magnesium. He'd been having bloody noses which is typical for him with low platelets - his platelet count was "5" which was a bit shocking. His wbc is still low, just 0.3, so it's not surprising that he still naps quite a lot. He had a few mouth sores, but as Dr. C predicted they weren't that deep and have started to heal. He was able to eat soft foods despite them. So we're sitting around, or walking the halls when he has the energy, waiting for engraftment to begin. Tomorrow we move to the Hope Lodge in Boston so we'll have some new halls to walk! And it will be really good for Owen to have some other people to talk to. I just have to remind him to keep the mask on when we're around others.
We return to clinic on Saturday as he may need more blood products again, and his mag is consistently low-he's had an infusion at every clinic visit so far. Luckily, it's not causing any GI issues - I have no idea why since it did with his first transplant but we're happy to accept that it's not a problem.
So good to hear Owen is continuing to do well. When Ben was released to go home on September 30th, it was with his port still in so that he could continue to get the magnesium infusions at home. After being given one lesson by a visiting nurse, we returned to the clinic the next day where it was decided that the port should be removed because the skin around it was red and slightly swollen. So, he then began to take 10 magnesium tablets a day. Recently, it went down to 6 a day, then 4, and now only 2 a day.
On Tuesday at our clinic visit, we were told that all his labs (I guess that means magnesium levels, potassium levels, liver #s, etc.) were all excellent.
Keep the good news coming,
Thanks for the update. Hope the new location and a few days improvement have him feeling better and happier. Hope you're remembering to take care of and for yourself through this, too.
I never had any GI issues from IV Mg. I didn't think the IV was supposed to cause belly issues, only the oral. But Mg sucks no matter how you get it.
I figure his counts will start rebounding soon. Plese let us know.
I'm not too experienced with these boards, and so when I hadn't seen any posts from you I got worried and went looking... and found this new thread. Whew. I'm so glad that Owen is doing well, and that the decision to be in Boston has been good. Anna's second transplant was SO different from her first; much more manageable - like Owen's experience. She also was released within a day or so - shocking to us. But good.
I would urge you to have serious discussions with your docs about tacrilimus and gvhd suppression. And, maybe, if Owen is willing, frequent enough bma's that you really stay on top of everything. Guess I'm pretty gun-shy after all we've been through. Also, I think that low dose sorafenib is really really worth it. Anna is now on 100mg (half a pill) bid and the assay that they did said that this is a sufficient dose.
I'm so glad you both are doing well. Can you get netflix or something while you're at the hotel?
Keep it up!!
Thanks for your concern and support. Owen continues to do well and we learned yesterday from Dr. C that the new cells have engrafted. It took longer this time, today is Day +20, but as Dr. C said, Owen's marrow was beaten up pretty thoroughly with prior treatment. He had to use a lot of neupogen for a few days in a row but his wbc rose from .7 on Saturday to 18 as of Tuesday (we expect it will drop quite a bit now that he's stopped the neupogen). His platelets are still low but increased on their own and his hct is holding steady. So long as his counts remain stable it looks like we will get to return home next week! We'll be driving back once a week to Boston for quite a while but it will be worth it to be home.
I asked whether Dr. C would do a Day 30 BMB and he said probably not. However he will do a PB chimerism; he said that a month after SCT he would only expect the PB chimerism to be about 30% donor given the reduced intensity conditioning. Apparently the chimerism at Day 30 with a reduced intensity SCT does not correlate with relapse/remission and it will take a while before Owen transitions completely to the new blood system. I share your concern about those FLT3 cells and might try to persuade him to do a Day 60 BMB. I'm happy Anna was further able to reduce her dose of sorafenib and will definitely discuss that with Dr. C; we already mentioned the possibility of Owen resuming sorafenib but Dr. C would like to wait a little while to let the donor cells continue to grow. It makes me anxious to wait another month to measure the FLT3 but I understand he doesn't want to undermine the graft at this point. He reduced Owen's tacrolimus slightly yesterday so he's certainly watching the GVH/GVL balance carefully.
We moved to Hope Lodge last Friday so we are in very comfortable surroundings, with a real kitchen to use, and a lot of channels available on Direct TV. Owen has missed Syracuse University basketball games and is really looking forward to watching SU play tonight. He's feeling quite well overall, just a lot of fatigue that makes him take a lot of naps. He gets impatient with himself for being tired and I have to remind him that he's growing a lot of new cells and that takes energy!
Tonight we're packing up to leave Hope Lodge in Boston and return home. Owen's counts rose enough in the last week to get the okay to leave, so long as we return for weekly check-ups at DF for the next few months. It will be a lot of traveling but definitely worth it to be home! While his counts looked good, there was one concern that I'm trying not to obsess over. His blood work today showed a single blast in the blood; the NP talked it over with his doctor and they believe it to be the result of all the neupogen he took as part of the DF protocol to prevent neutropenia. His blood work will be repeated by his onc at home in a couple of days and again early next week, and then we'll return to DF at the end of next week. If any further blasts are seen then this could all change but the NP thinks it's an isolated incident, with the huge amount of neupogen he had forcing the marrow to squeeze out a single blast. They still don't plan to do a BMB unless the blood work changes. I'm trying to remember that his platelets, hg and hct all rose so it's not likely to be relapse but I hate to hear the word "blast." We decided not to mention this to our family since there's no need to worry everyone if this is just a neupogen result. And we'll know soon enough if it isn't.
At any rate, Owen is feeling pretty well; still needs a nap or two every day but his energy has improved a lot in the last week. The reduced intensity SCT was much easier for him to go through than the first, just as his DF doc predicted. Since we're leaving so early (Day +26 today) he has to keep his Hickman line in and he'd rather get it out but we've become accustomed to caring for it and it's not too bothersome at this point. If his counts stay consistent for the couple of weeks he should be able to get the line removed. We're trying to take everything a day at a time. Our high school son is off from school this week and our older son has next week off from college so it will be great to be home, spending time with the boys.
How wonderful that you're on your way home! I'm sure your sons are looking forward to it as much as you and Owen.
Blasts are common after neupogen, so I'm sure the single one they found won't amount to anything. It's good to know that Owen is feeling well overall, just battling the usual fatigue. Can't get over how he came through all of this in such great shape. Lots of credit to him and his caregiver!
Enjoy your homecoming.
You've been doing this long enough to know a single blast doesn't mean squat. It is not a harbinger of anything.
They have a plan to keep an eye on Owen and what more do they need? It's going to be okay.
Enjoy home. This might only be Day 26 but ya'll have put a lot of work into getting here over a long time. You deserve some rest.
Thank you all for the kind support. I'm happy to say that you were right, a single blast turned out not to mean anything (Owen laughed when I quoted Tex that it "doesn't mean squat"). Owen had blood work done yesterday and the blast was gone, there were no others, and his platelets rose again, up over 100 now! I'm so relieved and I know this is the pattern the doc wanted to see. I'll try not to obsess again - Owen is happy that I'm not his doc, since I'd perform a BMB every time something atypical appears.
It's great to be home though our younger son is sick with bronchitis. Buy stock in Clorox - I'm using the wipes like crazy.
What a wonderful report! I'm very happy for you and Owen and your boys. It is a really good sign that his counts are coming up so nicely. Rah rah for stem cells!! And terrific donors!!
Enjoy being at home, and that lovely smell of chlorine. My kitchen always reminds me of swimming pools now!
All my best,
Love the great news! Sounds like recovery is going well with platelets over 100.
I know what you mean about the Clorox. Sometimes I wanted to wipe my son down with those cloths when he came in from sweaty sports. He did bring home several colds when my daughter was recovering from her first SCT, yet the antibacterial wipes, hand sanitizer, and keeping some separation between them kept his germs from infecting her.
What a great homecoming! Enjoy.
I havent been on hear in a couple weeks, but had you and Owen on my mond since I new he would be having his second transplant. Im so glad to hear that things are going so well for you all. I know you are glad to be home. I wish you all continued success and will keep you in my prayers.
That's great that you're able to go home! You must both be very happy about that, and about spending time with your sons as well. It sounds like the doctor's not worried about the single blast, I'll be praying for you that what they said is true that it's just the high increase in counts that caused it.
Cathy, I wonder if Tina Kennedy is still working on the Transplant floor at BWH? We were up in Boston for John's first transplant (an auto) in Feb. of 02-April.. We stayed at the Best Western and were up in Boston for three months total. We loved the care we got there. Since the auto meant a full conditioning regimen, we spent three weeks on the transplant floor. Unfortunately, he relapsed and had to have an allo. John had a reduced intensity allo at Hackensack in June of 06 and so far is doing very well. I truly loved Boston. It was real fun in the winter! But a wonderful city. Glad Owen is doing so well. Judy
Judy, we didn't meet Tina Kennedy but that doesn't mean she's not working there. Owen was on the 4th floor of BWH; half of the floor was for SCT patients and half was for pulmonary patients. I think the main SCT floor at BWH is on the 6th floor and we never went up there. At any rate, the nurses we met were really wonderful and spent a good amount of time with Owen. Don't know if his floor was all reduced intensity SCT's or not, but the nurses didn't seem as rushed as they did at Sloan.
Owen continues to do well; his platelets keep increasing, wbc and hct holding steady. We were allowed to skip his weekly check-up at DF this week in view of the big snowstorm that hit the east coast. We received 18 inches of snow over the last couple of days, and it's snowing a little again here in the Syracuse area. So we contacted his NP at DF who agreed Dr. K could do the blood work again this week and check Owen's tacrolimus and sirolimus levels. Only downside is he wasn't able to have his Hickman line removed but I'm sure that will happen at next Friday's DF appointment.
Lately he's experienced occasional bouts of nausea later in the day and I nag him to eat snacks more often as he does better on a full stomach. He really needs to regain some muscle strength but with all the snow and cold outside walking just isn't realistic. I've suggested lifting soup cans and he doesn't think that's enough exercise but I think he'll change his mind after I buy him a 5 lb. free weight. It's going to be a shock to realize how heavy that feels but I guess you have to start somewhere.
What a great report on Owen. So glad that you're focus is now on eating and exercising; that says a lot about how well he's doing.
I know how hard it is after SCT to exercise, what with the fatigue and then the snow. Have you considered the Wii fit? My daughter has been using it after her SCT and finds it enjoyable. Exercising indoors can be so boring--soup cans or other weights!
Hope the nausea subsides, along with the snow.
When we had bad weather days, I'd just walk around the house for 20 minutes or so. Yeah, it boring. But it helps things keep up. and as long as no one sees you, you don't doubt your sanity.
I actually started with 2# weights. Afterwards, I wished I'd though of Kelly's soup cans.
Glad this is the worst of your current worries. At least I hope it is.
I've suggested lifting soup cans and he doesn't think that's enough exercise but I think he'll change his mind after I buy him a 5 lb. free weight. It's going to be a shock to realize how heavy that feels but I guess you have to start somewhere.
My exercise instructor said that rather than spending money on heavier weights, you can just to more reps with lighter weights or do the reps more slowly. You can get the same effect that way.
When we were in Seattle, I didn't want to buy the weights and then cart them home. I used soup cans for my arms and tied bags of rice on my ankles. It really got annoying when my wife wanted to use the food for meals - what was she thinking?
Cathy, I'm glad to hear that Owen continues to improve and that things are going well. You're absolutely right about eating several small meals as I think that's easier for the body to digest versus large meals. Please keep us updated as things progress. Keeping you & Owen in our thoughts & prayers....Betsy
Cathy, I glad to hear Owen's counts continue to improve and that he seems to be holding his own. You're absolutely right about encouraging him to eat several small meals because that's much easier to digest rather than large meals. Please keep us posting and know that you & Owen are in our thoughts & prayers as you travel this journey again....Betsy
Owen's progress has been up and down in terms of his counts. He's now on Day +58. They rose steadily and then decreased for a couple of weeks, after his tacro level was increased. Last Friday all of his counts rose and he was started on Bactrim. At yesterday's check-up at DF we learned that everything dropped so he's now off Bactrim and has resumed Mepron. The NP is quite confident that the Bactrim is the culprit in lowering his counts so I hope they'll improve again with the switch in meds.
We also discovered that his creatinine level was pretty high (1.9) yesterday, despite a reduction of his tacro a couple of weeks ago. Initially the NP thought Owen would have to go in daily for IV hydration but Dr. C decided the tacro could be further reduced. We hope to see a difference by Tuesday when his levels will be checked again. This was a problem for Owen after his first transplant and his levels improved once the GVH prophylaxis stopped. It's way too soon to stop the tacro/sirolimus but we're happy that Dr. C reduced the amount. Owen was very happy to escape daily IV's since his Hickman line was removed last week and he doesn't enjoy having his veins stuck.
His energy level is really good at this point; he's been out walking every day enjoying the beautiful spring weather, and his naps have decreased a lot. He was able to drive about half-way to Boston yesterday, and even a little in the evening on the way home. His diet is still an issue in that he experiences some mild stomach issues every afternoon but he's maintained his weight though it's very low. He became lactose intolerant with this second transplant although it didn't happen right away. He ate tons of cheese sandwiches for a while and abruptly started to have some extreme GI issues. Now that we've figured that out his GI issues have improved and he uses lactaid products to avoid discomfort.
Still no bmb planned until Day 100, but his peripheral blood chimerism results were good from his Day +30 test. His neutrophils (CD 15) were 100 % donor and lymphocytes (CD 3) were 80% donor. The doctor was very pleased, as were we, although he had told us that results this early were NOT predictive of remission/relapse. I think the plan is to test the chimerism again next week when he'll be over Day +60. In the meantime, we're trying to rejoin "normal" life, as much as possible given the transplant restrictions. I'm back at work part-time, so life is normal and busy for me. Work is out of the question for Owen for quite a while, since sales require a lot of public contact. He plans to attend some of our son's high school lacrosse games now that the season is beginning since it's safer, if chillier, to be outside. Though this past week was beautiful, it's been known to snow in the Syracuse area in March and April!
Glad to know that, overall, there's been improvement for Owen. I know the ups and downs of the counts can drive one crazy, but the best part is that he's feeling better and has more energy. Just the fact that he wants to get out and do more is terrific. With all the med issues, it may take a while for his counts to resolve, but it does seem that he is on the right path.
How are you doing at work? I know when I first returned it was tough to not know every minute how Marie was feeling. Hope that you're able to get a little respite at work. It's so good to have some semblance of a normal life again. Enjoy!
So glad to read of Owen's continued progress. The important thing is that he is feeling well, and, as you know, these ups and downs are normal. Being back at work is also good. I remember going back for a couple of hours a day almost right away, but I guess I'm lucky because work is only 10 minutes from home, and since the business is ours, I can make my own hours. Even though our husbands' health is never far from our thoughts, it is freeing to be away from home.
Keep up the good news,
We haven't mentioned this lately but don't forget the Sixty Day Slump. He's on the cusp of it right now.
As for the rest, it is a crapshoot. My counts went back up when I re-started tacro and Bactrim last autumn. I'm glad they're figuring it out but today's fix can always be the wrench in the works tomorrow.
Don't you just love this game?
Haven't posted directly in quite a while so I wanted to share that we celebrated Owen's 100 Day mark since SCT on May 1st. Actually, we went to our younger son's lacrosse game that evening so the restaurant dinner had to wait for the following day. But both were celebrations. He had another check-up on Friday in Boston and everything looks good. Dr. C has not done a bone marrow biopsy which makes me a bit anxious but I understand his reason. He says it wouldn't reveal information he would act on just yet, other than to withdraw all GVH prophylaxis. He already reduced the tacrolimus a month ago and on Friday he cut both the tac and rapamune doses in half. He'll continue to do chimerism tests on the peripheral blood and since Owen was 100% donor in all cell lines at the last test, any decrease would signal a problem. Owen is happy not to have any bmb's as he's had 22 since he was dxed! Right now his counts all look good, with normal platelets, hct and hg that are creeping up and a low-normal wbc. Of course, any big change in his counts would also cause Dr. C to perform a bmb.
So we enter this period of watchful waiting. While it's a little stressful to live this way it's still amazing to us that Owen has come this far since last summer. Our younger son will graduate high school next month, and our older son brought his girlfriend home to meet us, the first time he's ever done that. We didn't think Owen would be around for all of these and now we're hopeful that he'll be here for many more family landmarks. I keep looking up the vaccine trials that others have mentioned on the boards as I feel more comfortable lining up any possible treatment options should he need them. And he can and would resume the sorafenib if necessary. But just maybe he won't need anything else!
What wonderful news! The big wonderful day 100 is a milestone to celebrate for sure. Glad to hear that all is well.
Re: the vaccine trials are something we're interested in also. We met a man who is one of the people chosen to undergo the trials and he had positive things to say about it so far. They had on the news that a vaccine is just starting to be used to treat prostrate cancer. I wondered if it was the same principle.
Congratulations to both you & Owen for reaching to 100 day mark....That's fantastic!!!! I understand how you feel about the milestones with your sons. That's exactly how I prayed for Dean....to be able to see our son graduate from college, then get married, then to be here to celebrate the birth of our first grandchild. Now Dean is still here and Jonah is 1 year old with hopefully many more special memories in store!!!
Thinking of you both.....Betsy