How long after BMT?

[Heather8773]

How long after BMT until y'all had normal counts? My husband is on day +65

[Whizbang]

I'm D+44, and all my counts have been in the normal range except for RBC's(3.56) and HGB(10.5)...

Different people see different counts come in first, and some lag behind depending on different factors...

Some I've come across at D+(near 100) still didn't have normal WBC's, some had low HGB/RBC....

One guy was at D+70, and still had HGB of 6.8 - 7.0...

Misread the post...
I started to see .1 WBC on D+10, but D+14 is typical... and they start cascading from there...

[dfantle]

How long after BMT until y'all had normal counts? My husband is on day +65

Hi Heather, as Whizbang mentioned achieving normal counts is different for everyone. For me, normal counts in all 3 cell lines took about 5 months. One thing that can keep the counts from normalizing is the immunosuppression medication.

-My white cells & neutrophils hit the normal range around day 21 which was also the first day my labs showed these engrafted. (Neutrophils were still just .24 (240) on day 17. Typically white cells will be the first cell line to engraft)
-My platelets were well into the normal range by day 16 & my last platelet transfusion was around day 3. (Oddly the platelets were the first cell line to normalize when they soared to 300. This had all the experts shaking their heads.)
-My red cells normalized at about 5 months. (My last red cell transfusion was 3-1/2 months post transplant, HB normalized at 5 months & although my HCT was 1 pt shy of normal until about month 7, it was so close to normal I considered it to be normal)

When I lowered my cyclosporine dose to 100mg 2x day in late November (10 months) my HCT bumped to 40

Best,

[Tii]

I had my BMT 12/2012, was transfusion dependent until 8/2013, platelets still only 65 at 12/2013. Dr said I might never be back to normal, but this is the new normal and I can function just fine!

Tii - 37 MDS/T-cell leukemia, BMT 12/2012, sister donor.

[Whizbang]

As Dena points out (dfantle), the medications you are on have a huge effect on certain blood components... The fewer medications you're on the faster certain blood components will recover...

While at Hope lodge I had quite a few discussions with BMT patients about this... As many patients react differently to certain drugs, and some medications can repress certain blood components in a bad way...

[Heather8773]

Thx y'all ;) is it normal to go up and down in counts? My husbands WBCs seem to keep going back to 1.? And then he gets neupagen. His plts dipped back 15 pts

[dfantle]

Thx y'all ;) is it normal to go up and down in counts? My husbands WBCs seem to keep going back to 1.? And then he gets neupagen. His plts dipped back 15 pts

Hi Heather, my team told me it can take a year for counts to normalize.

Neupogen shots can redirect the energy from making platelet and/or red cells, to making white cells. It's a delicate balance and there are different theories on giving neopogen shots post transplant, depending on length of time post transplant, levels of neutrophils... I definitely experienced this relationship when I regularly required transfusions and neupogen prior to my transplant.

A few questions:

Is he still under the care of his transplant team?
How long post transplant did he begin receiving neupogen?
How low are they letting his neutrophils go before they give him neupogen?
How high have all his counts risen since his transplant?

Best,

[mausmish]

Heather, I recall reading somewhere (sorry I can't find the source) that it is common for counts to go down around day +60...something about the new cells' first "turnover". Sorry I don't have more info but I vaguely remember talking about it with the nurse or doctor after my bmt. Karen

[vickij]

I had my transplant in June. I did good the 1st few months, my main problem was weakness & pain in my arms & legs. At about 3 mo. my hemog. started to drop to about 6. Every few weeks I would have to get transfusion of 2 units. This past week it dropped to 5.4 & I had to have 3 units.
The Drs are not sure what is causing it. They said everyone reacts different.
They are cutting back on some of my meds to see if that helps.

[Heather8773]

Thank y'all so much for your replies! They are all insiteful!
Yes as of two weeks ago he started to go once a week bc he's been doing pretty good.
He has had 6 shots. 2 while in the hospital around day 15..4 since being released 10/30/13
Even when he was at 1.9 on his WBCs last week his nutriphils were in the upper end of normal. I'll have to ask to see why they give it sometimes and why not.
Well his WBCs have got to almost 6 but I don't trust that bc it was after neupagen. They keep trickling back down.
His HGB seems to be standing still the last couple weeks at 12.8
His plts went from 169 to 150 (earlier I said 15 pts but I guess it's really 19 pts back)

[Heather8773]

We got a call his cimerisiums have gone down
It was 100% donor in one that now 95% donor 5% him
The other was 92% donor 8% him now it's 70% donor 20% him
Has anyone experienced this!!!!!
So ready for this nightmare to become a dream

[sstewart09]

I'm not certain, but I think it depends on how his counts are doing. If they are trending down then doctors might give him an infusion of donor cells. If they are stable, then they'd just monitor him. I have heard of people doing just fine with a mixed chimerism. I know it's a roller coaster and it stinks that everything is out of your control. Keeping you guys in my thoughts and prayers!

[Heather8773]

Thank you;) his team said they will try lowering the prograf and if that doesn't work then they will get more cells. So scary;(

[Whizbang]

Heather,

If you noticed my thread, all my counts (except for RBC / Hemoglobin) are trending down lately... I'm lucky that they were all so high initially... My Platelets are now down to 117...

Doctor says this is normal, and is indeed due to turnover (life span of the different blood cells)... Again, it can take quite a while for blood to stabilize, and there may be some bumps in the road...

As for the lingering cells, that has alot to do with pre-BMT conditioning, and it's a trade off...

I had the most aggressive possible conditioning, so it is unlikely I kept any of my own cells... (11 TBI treatments, 2 separate Chemo + rATG)...

It's all a trade off, as aggressive conditioning can bring on more complications pre/post BMT...

[Heather8773]

Thank you I did notice that on your thread. My husbands hgb seems to be about the same as well. I hope his chimerisms sort out soon.
Good to know that your Drs confirmed the "turn over" also bc his dipped around the time frame y'all are saying . Close to day 60

[dfantle]

"Even when he was at 1.9 on his WBCs last week his nutriphils were in the upper end of normal. I'll have to ask to see why they give it sometimes and why not."

Heather, IMHO I can't think of any reason why a transplant team would continue to give Ronald GCSF if his neutrophils are in the upper end of normal, especially given where his other counts are. Unless he was still dealing with severe neutropenia and suffering from regular infections I don't think an experienced team would give GCSF at the intervals you suggest post transplant without a solid reason. I would seriously question why they are doing this and ask maybe even for data to back it up.

I'm so sorry to come across so strongly here & dont want to upset you but even with my minimal experience & understanding, it just seems off. Prior to transplant, I regularly gave myself GCSF shots when my neutrophils fell below 500 (.5) for 1-1/2 years, under very close watch from my Hematologist. When I switched to the transplant team 1 month prior to my MUD transplant, my transplant Dr's at Fred Hutch in Seattle were adamant I stop my GcSF several weeks prior to transplant regardless of my counts, and very clearly told me I would not have this post transplant unless it was very clear I didn't engraft by day 30 + (I believe this may be longer for full transplants but I had a mini-so engraftment should have been between day 14-21 & I engrafted at day 21).

All my best,

[DebS]

Heather,

Doug is off Prograf altogether and has been for some time now. His kidneys were taking such a hit that the doctor didn't think he could keep him on it. He is now on Cellcept (sp?) and that dosage has been increased.

He did have GVHD of the skin and has been on steroids as well. But the doctor thinks that this combination is working well for him.

They have to adjust and adjust and then readjust the meds. It is such a delicate balance, as many have said.

Take a breath, hang in there, and KEEP asking questions. They will get it right. I am sure that your husband is getting great care and has a lot of expert opinions in there. But for your sanity, get your questions answered!

Good luck and God bless!

Deb
P.S. Oh yeah, throw Merry Christmas in as well;)

[DebS]

Heather,

When I read your comment about this being a nightmare, I wanted to tell you what I have done throughout. I sing Avicii's "Wake Me Up" at the top of my lungs!!!

Prayers and good thoughts coming your way.

Deb

[mausmish]

Great song, Deb. It's on our lengthy tagline list for future blog posts. Heather - a scary time for you and your husband. Hoping it's simply the 60-day slump and sending many healing thoughts your way. Wishing you the happiest of holidays that the circumstances allow! I had my BMT 3 years ago on Nov. 30. It was a tough holiday time with chemo for Thanksgiving and post transplant recovery for Christmas and New Year's. Now, it's just a bad memory as I happily celebrate being alive with 100% donor cells. I definitely got the best gift possible!

[Heather8773]

Dena, thank you very interesting. I will defenantly be asking. They don't mind I think they expect I'll ask at least something;) his nutriphils stay consistant it's just the other white cells that always go out of wack changing all kind of ways. Did you ever have a change in chimerism?
Deb I love that song!!! I blare it when I'm nervous! Especially when I would run errands while my husband was in the hospital. I'm happy to see they have got Doug on a good balance! Wishing y'all a very happy Christmas, new year and continued good news!!
Mausmish did you ever experience a change in chimerisms? Im Happy your 100% now!
His Dr said 60 days is about when the blood type changes over so they see a drop while that's happening. So they will check his blood type next time;) I wonder if 60 days effects the chimerism?
Happy holiday and thank y'all my husband and I are feeling more at ease from yalls responses!;)

[mausmish]

Heather, my chimerism has not changed. I've been 100% donor since Day +30. But everyone is different, and I've read many accounts of others with mixed chimerism and no problems.

[dfantle]

Hi Heather, I have not seen a reduction in my chimerism, however my blood type was the same as my donors and perhaps that helped.

I have also heard of patients with mixed chimerism & no issues, especially as close to transplant as Ronald.

Best,

[Heather8773]

Thx y'all, yalls responses were helpful and comforting! His new Cimerism test said his granulocytes are back to 100% donor and the mononuclear are going up and now at 81%! Yaaaay! This was after a week of lowering prograf. I asked if this would continue to go up as the prograf level is still lowered and his DR said in the beginning it's normal to see the Cimerism wobble back and forth and then even out. He said that's fine as long as the blood counts don't start dropping (dramatically? I'm guessing)
Anyway I'm happy their going up!

[kris]

Heather,
I can only remind you every patient is different. Thus the plan of care is different. Rick has been on sirolimus and tacrolimus for his immunosuppressants. He still is on decreasing tacrolimus at 2 years. All counts were not nornal until after 16 months. That being said he was never on epogen, aranesp nor neupogen post transplant. Nor did he require any transfusions.
JUST monitoring, excellent hygiene, good nutrition, following medical advise and taking all meds as prescribed. If something didn't seem normal for him, difference in his or my evaluation of him we brought it to the staffs attention. The slightest thing.
We stayed away from infants, animals and sick people. Rick wore a mask for the better part of that time especially with every Dr appointment...sick people are in clinics and hospitals. Everyone is immunosuppressed at BMT. (Who knows what bacteria or virus someone is carrying). When dietary restrictions were lifted at day 100+, OUR ATTITUDE was "Is today different than yesterday?" No!... so let's stick with what we know. Reminding ourselves his immune system was less than 100 days. We stayed on restricted diet for nearly a year until we felt comfortable adding new foods and going out. The few times we went out I had the waiter bring a cup of boiling water to soak the utensils in. Ordered food cooked to 165 degrees, never had the salad bar, nor raw onions or lemons in water.Ww wiped the table and chairs with clorax wipes. Precautions we feel to this day has made a difference. If we feel uncomfortable in a restaurant, home or event we leave. Could it be viewed obsessive...yes. Has it been worth it mentally...absolutely. Rick is at his post MDS diagnosis self....that is a lll we can ask for. he has exchanged a terminal diagnosis for management of chronic diseases which are under control.
Heather we wish you well, every journey is different. If it feels right it is, if there is something different for yu..mention it to your doctor.

[Heather8773]

Kris thank you;) your response is perfect timing! My husband is approaching 100 days and I'm a total safe then sorry person (only exception was we were around our little dogs around day 60 but w extrem caution [other then sleeping w us;/) but I have been questioning lately if I'm to strict w "the rules" bc I feel like in other peoples eyes i am and my husbands been patient but I think he's so ready for the relax in rules at 100 at this point. Your right though whats 24hrs? When things have been working. My fave advise a PCA gave us was " look. I've played and joked w y'all but now I'm going to be serious. The people that end up admitted back here or even worse don't follow the "rules" (of course she didnt mean things out of our control) they are so ready to get back to the things they did (crazy things like smoking outside at under 40 + ....etc..) but there are things happening in your body that are so complex and profound. They are just going to take a year ( at least) to heal and complete. So I don't care if your feeling good full of energy. Don't over do it, these things take time!"

[DebS]

Heather,

I totally agree with Kris. Day +100 is a day to take a breath and see where you have come. But know there is so far to go.

As you know, we will be at Day +100 next week. I don't see us changing things up real soon. Right now with his stomach issues, Doug doesn't feel much like eating anything. Dinner out will not be frequent. And we have given up salad bars for the rest of our lives--both of us!

I will always have wipes in my purse, car and suitcase. I wipe everything down constantly and I am sure I will continue to do so.

It will be nice if we can introduce some fresh fruits and vegetables into Doug's diet. We were told two weeks ago that he could eat a banana if I washed it, peeled it and cut it. He loves fruits and vegetables and has not had any fresh in 7 months!

It is funny the things you learn. I have never used a sponge for the kitchen. Some of my friends do and I will NOT touch another one:rolleyes:

Best of luck and stay the course.

Deb

[dfantle]

Heather, the thing that struck me the most about how careful i should continue to be after day 100, is when I watched a GVHD video on the Blood & Marrow Transplant site: http://www.bmtinfonet.org/

The video mentioned that GVHD risk &/or symptoms could increase with cold/flu or other illness, including food borne.

This made me decide not to put myself around anyone with any symptoms until my 1 year date (later this month). We even cancelled a planned flight, when my hematologist suggested that unless it was a necessary to fly on a commercial airline, she wouldnt recommend it until my 1 year date.

We did start eating out at 60 days as my counts were normal, but only at times when the restaurants were relatively empty. I made sure all my food was cooked to 165 & I still haven't eaten any non cooked food except at home, where I know its been properly cleaned. We avoided sitting near anyone who appeared to have symptoms & I am still 100% hands free everywhere except at home, using disposable gloves or paper towels to open doors...

At home, my husband continued to wipe down surfaces for 6 months post transplant and anyone entering our home had to be healthy and use hand sanitizer.

Truly we've been following most of these rules for almost 3 years because my immune system has been compromised since March 2011. These precautions worked so well that my first illness in more than 3 years was a cold end December. Even though we have been out and about quite a bit.

[Heather8773]

Deb it's funny when I realize the things that seem so germy to me now, or should I say shocking the things I didn't think were before!!! Sponges are super high on that list!!! Did you see the post I had about Ron's nutritionist advise about fruits and veggies (all berrys excluded)
Big bowl, one cup white vinagar, room temp water, rinsed and rubbed well veggies, soaked 10 min in the mixture. Then rinsed again cold water.
Anything that has a lot of hard to clean aspects (berrys, some veggies that you always find grit on) still avoid. But I would by the pre rinsed or organic when available spinach, kale, romane then soak those (Double clean!)
Ron loves and really missed fruits and veggies. I think that even w this wash they like for the nutriphils to be decent.
Ask Doug's Drs and maybe you can blend theses things for him or he can start eating them.
Dena thank you! I needed that advise! Those are the important things that really keep Ron on track. If he is given the reason for something's purpose it's easier for him to stay on track!
Kris thx again! I used that tonight w Ron " well so far the things your doing have been working so why stop now!" bc he's getting antsy!

[Neil Cuadra]

Anything that has a lot of hard to clean aspects (berrys, some veggies that you always find grit on) still avoid. But I would by the pre rinsed or organic when available spinach, kale, romane then soak those (Double clean!)
When my wife was immunocompromised, she craved fresh vegetables but many of them were off limits. Canned vegetables can be nutritious enough but they just aren't the same. I remember separating the lettuce leaves and washing each one individually when she could finally have mixed salads.

Even now, years later, we're more careful than the average person. We're always wary of buffet lines; we would rather be near the front of the line than following a bunch of careless people.

With the recent scares about unsafe grocery store chicken, we're again reminded to protect ourselves from sources of infection.

[dfantle]

Heather, regarding the sponges. My transplant clinics food & home safety instructor from Fred Hutchinson advised to rinse them and put the damp sponges in the microwave for 1 minute before using again. She assured us the studies they've done show this to be fully effective. We kept 2 glass containers near our sink, 1 each for clean & dirty sponges & microwaved the dirty sponges daily (more if we ran out of the clean ones).

Though if your clinic suggested not using sponges this is likely what is follow if I was a patient at your clinic.

Best,

[Heather8773]

Great advise thx y'all!