And we have a date

[Diver down]

Glad to hear you are doing well and fever resolved with only 2 doses Cefipime. Only 5 days ahead of you. Had fevers much of course and was also on Cefipime and Vanco- no bacteria ever identified. Temp went > 105 night after stem cells - required ice baths ...torture. ANC never went below 500 but given Neupogen on day 2. ANC now 3.1 Plat 105 Last dose Neupogen last night; Hopefully the counts will hang in there off Neupogen Not eating or drinking much. Some mucositis - but now improving. Developed a rash on chest and back with some involvement arms and thighs -being treated with topical steroids- thought to be acute GVHD but fortunately no liver or GI involvement. A long road but hopefully if trend continues will look at discharge early to mid week.

Hope your course continues smoothly.

[DanL]

wow! 105 platelets and anc over 3? that sounds pretty good to me right now. I have an ANC of 15, supported platelets of 12 and supported HGB of about 9 right now. All chemistries look good.

Mucositis is limited to the mouth and throat, but they hooked me up to a fentanyl pump to make sure that I keep eating and drinking, which while challenging, are both doable. I had the doctors switch almost any drugs eligible for IV to IV to try and let my stomach settle a bit.

Sounds like your husband is making great progress, will keep both of you in my prayers.

[dfantle]

Dan, Yay, sounds like engraftment. Great news. Keep up the good work . So happy the infection seems to be gone now as well.

[DanL]

dfantle, thanks for the encouragement. I think that we are getting there with engraftment. It is a slow, steady kind of path, but seems to be moving along. Docs have not seemed concerned enough to inject any Neupogen just yet. I am at an ANC of 323, WBC .5 now, platelets went up to 16k from 13k a couple of days ago, so they are at least holding. Getting daily magnesium and had a couple units of PRBC last night as I was on the border.

We are aiming for a release on either Wednesday 3/19 or Friday 3/21, either of which are good enough for me.

[bailie]

Dan,

How is your strength at this point? Are you getting out of bed ok? Any mouth problems? Digestive system?

Sorry for the questions. It does interest me because I'll be following you as soon as I get a donor.

[dfantle]

Dan, my understanding is some centers, like mine in Seattle (Fred hutch) don't typically use neupogen this close to transplant as it can compromise new cell growth across the lines. Of course this may depend on a number of factors, so its not set in stone. Different schools of thought.

Oops on my engraftment congrats. I misread your #'. Great to see everything steadily improving

I had a mini transplant, so #'s improve a bit faster than a full transplant. Although typically in both types of transplants the white cells/neotrophils engraft first, in my case it was the platelets which sored to 211 on day 14 (& 315 on day 16). My white cells engrafted on day 20. The numbers can bounce around a bit still after engraftment. For example, at 1 month out my platelets dropped below normal for about a week, suddenly, which freaked me out a bit since they had been so high, but my transplant team reassured me this happens & it should return to normal-which they did.

Great to hear they may release you this week

[DanL]

Bailie,

i have been out of bed and walked at least one mile every day since i was admitted to the hospital, typically walking 1.5 to 2 miles, so strength is good, but I am fatigued, meaning that I get through the daily tasks - eat, shower, exercise, see visitors, talk to family and friends on the phone, etc. but I am more tired than usual after completing it all. It is a matter of how I prioritize. The more I prioritize me - walking, eating, sleeping well, the better i feel.

I highly recommend earplugs for sleeping as a side note.

My mouth is doing just fine in terms of sores, but my taste buds are pretty well messed up and eating is more of a chore than a delight. The goal is just to get calories in. I have not had a terrible time with nausea, though until the last few days, i have taken almost any anti-nausea that they gave me, i have been completely weaned for 2 days to no ill-effect. Digestive tract - there are some issues, but they are resolving. I had a poorly placed fissure after the first week that caused considerable discomfort, it is getting better. I am not experiencing any substantial problems with extremely loose movements as i hear is common - been fortunate.

Ask lots of questions be prepared for curves in the road, get up and move, even when you don't want to. If you are having trouble, there are physical therapy folks that come by every day if needed to get you out of bed and going, so if you don't have the will or the strength, don't be ashamed to use the resources to pull you through.

dfantle, it is quite a mystery as to how and why people engraft the way they do. I am slow and steady on the whites, but had a nice ANC jump last night from 323 to 580, and my platelets went up again to 22k from 16k. I was very excited at 3 in the morning when the numbers came back. At the end, I dont think we care about the order of engraftment, just that it happens.

[sbk007]

Glad to hear you're coming along. Someone mentioned using plastic utensils instead of metal for the taste. Good to hear no mouth sores. Continued Godspeed on your journey!

[DanL]

Thanks for the suggestion of plastic instead of metal. The dishwasher was broken at the hospital, so they were using plastic utensils and it did seem to make a small difference.

update at day +20 - ANC 468 - down slightly, platelets up to 38k (best in 4 years) and HGB up to 10.8 from 10.5. Two steps forward 1 step back. I am sure that tomorrow will bring me neutrophils galore.

Got a good night of sleep for the second night in a row.

Doctor says that we are still aiming for a Wednesday release, but we'll see after the drop below 500 ANC.

[riccd2001]

YMMV but 5 years ago when my high dose prednisone treatment took away my sense of taste, my GP recommended pineapple chunks to help bring things back to normal. It took a while, but that worked for me.

[DanL]

riccd2001, that is an interesting suggestion. I am now wondering if that is why they serve a slice of pineapple with every dish here? I will certainly give it a try since I would like to taste food again sooner rather than later.

Update for the day - I am getting released from the hospital to outpatient today My blood counts cooperated pretty well last night, so I am up to 11.0 HGB, 44k Platelets, and 1.3 WBC with ANC at 793. I will be on a neutropenic diet until I hit 2000, even though the threshold here is 1000 ANC, I just dont want to have to come back for something like a food borne illness if i can prevent it. All chemistries look good except magnesium, which is chronically low being on Tacrolimus. 1.7 almost every morning - which means 4 grams of magnesium IV.

Total of 30 days in the hospital. not too bad.

[Whizbang]

DanL...

Congrats on your impending release!!!

I agree with you on the neutropenic diet, but I followed it strictly until D+100, and I'm still on a modified neutropenic diet... There is really no reason to risk getting a bacterial infection...

Also be careful once your released, it's still flu season, so make sure that either you or your visitors wear masks for quite a while... Remember to ask your visitors whether or not they have a cough, cold, runny nose or stomach issues... Also whether or not they've had live vaccines such as MMR and/or shingles shot (very common recently)...

I tried to limit visitors (even until today D+139) to the same close family and friends...

God Bless and all the best!!!

[Peachy]

Congratulations DanL! Exciting for you and your family.

We will be visiting the hospital you were just released from should a BMT be in our future, so was really happy to read the good reports.

[Heather8773]

Dan thinking of you how is the home life? How have you been?!

[DanL]

Heather,

thanks for the outreach - life at home has been good. I am working my way toward something that vaguely resembles normal, of course it is a new normal. Had my second outpatient visit today, my reds and platelets took a little break over the weekend, but whites and neutrophils continued to climb. I am now at day +26, which is amazing how quickly that happened.

I am scheduled for my 30 day bmb somewhere in the next few days. Docs think that i may have a little bit of skin gvhd starting to crop up, but it hasn't really advanced in the last 5 days, so it is a watch and wait, which is fine - i don't have pain or itch - unless in a warmer shower.

I have been able to walk and do small amounts of exercise - i usually go just short of breaking a sweat, which also seems to help with everything.

[bailie]

Dan,
What is your recovery time after walking? Do you try to walk on a schedule? I would think that it would be easy to put it off.

[DanL]

bailie,

I only walk until i am starting to feel tired, not past that point, so it may take me 3 or 4 tries to hit my target for the day, but it does two things 1) wipes out boredom and 2) keeps me active enough that PT did not see fit to give me any one on one sessions. I also found that when i was in the greatest discomfort, walking eased the discomfort, no matter what the malady.

My schedule was flexible - there were mornings where I just couldn't sleep and would walk at 6 in the morning, then come in and take a nap, other times where I would walk at 10 or 11, and then take my last laps at 7 or 8pm. My trick as a rule was to order breakfast, lunch or dinner, then walk until they arrived with the food, or as long as I could handle - that was the closest to a schedule that I had.

Now that I am home, I am following the same rules. When I have the energy, i walk and walk until just short of being tired, then go back again and again until I reach my goal.

[bailie]

Thank you. Do you go in every day for checkups? Or, is it mainly for PT? Will it be every other day after +50, or what kind of a schedule is it?

[Heather8773]

Dan
My husbands platelets and whites have always bounced around post transplant. I think most people I speak to regardless of dx have trouble w the platelets bouncing around post transplant in the beginning (I guess they're sensitive lol)
Have you asked your drs what's the plan after watch and wait w the GVHD? And what's the plan after plan A? I have always requested plan A B and C when things got in watch in wait mode but I would put my husband in a bubble if I could lol that drives him crazy but loves I love him.
Still it's nice to know there is a back up for the back up plan.
I hope your energy, counts, and overall health cont to improve!!!
God bless!!!

[DanL]

Bailie,

I currently go in for appointments to the outpatient clinic every monday, wednesday, and friday and will continue that pattern until they think i can go to two days per week, which may be in just a few weeks depending on progress.

Heather, Plan A is watch and wait, Plan B is add another drug like sirolimus or MMF, or if absolutely necessary prednisone, and they also have photopheresis available as an option. And of course, creams to deal with any skin gvhd issues.

they really try to take as much of the less is more philosophy barring clinical evidence against it.

[Heather8773]

Dan that sounds perfect! We have come up against some "events" that I am thankful there are ABAndCs for but totally agree that A is the best plan to be in! No need to over react but happy there is an exit strategy!
Your posts sound like your getting stronger and stronger!!

[dfantle]

Dan, so great to hear how we'll you're doing.

[DanL]

I had my day +30 appointment today - it was pretty good. HGB 11.4, WBC 3.5, ANC 2.0, platelets up to 74k.

30 day biopsy comes on monday along with a dose of Pentamadine (sp?) to help ward off those pesky opportunistic infections..

[sbk007]

Sounds like your on your way DanL. Congrats and continued success on your journey. Keep up the good work.

[DanL]

First official update in a while - 90 day biopsy came back clean, we hit day 100 on Friday. I do have a little bit of GVHD of the gut and skin, but both are limited in scope and well controlled with Budesonide and Lidex skin cream. We are going to start dropping tacrolimus slowly here starting tomorrow and see how the system responds this time around.

I am still on daily magnesium - 4 grams per day, acyclovir, ursodial, budesonide for the gut gvhd, desonide and lidex for the skin gvhd, voriconazole, and a couple of other things for digestion.

Initial endocrine workup looked pretty good - may be on the lower end for vitamin d. All other chemistries and functions look pretty good, which I am happy to report.

It is amazing both how quickly and slowly 100 days passes. It seems like yesterday, but the feelings at the time seem an eternity away.

I once again cannot say enough for the support of my doctors, nurses, and of course the marrow forums community.