Another MDS to BMT - New forum member

[Whizbang]

Hello all, I have read many of your stories, and needless to say my heart and prayers are with you all...

I was initially diagnosed with splenomegaly (short lived) the Friday before Fathers' day 2013... What a wonderful weekend I had!!!

To find out my chromosome testing came back the following week 'less than perfect' (Major defects)... And 5.5% blasts...

My blood was about half the minimum across the board at diagnosis, and has been on it's way back (to about 75% of min.) on it's own...

My secret was tonnes of rest, 1000mcg Folic acid daily, Stress B complex and I went Gluten free for the most part; and also adopted a sedintary period of one month... (now back to walking)

History of my blood for the last two months:
Component Standard Range 6/14 6/19 7/18 7/30 8/15
RDW-CV 11.6-14.4 % 18.1 18.1 16.1 15.1 13.8
RDW-SD 35.1-43.9 fl 59.1 58.1 51.5 48.1 40.9
HEMOGLOBIN 13.7-17.5 g/dl 8 9.1 11 11 9.9
HEMATOCRIT 40-51 % 23.3 26 31.7 32.4 27.8
PLATELET COUNT 150-400 K/ul 70 76 95 91 51
RED BLOOD CELL COUNT 4.63-6.08 M/uL 2.57 2.91 3.56 3.64 3.29
WHITE BLOOD CELL COUNT 4.2-9.1 k/ul 2 1.9 3.2 3.5 2.6
NEUTROPHILS % 34-68 % 46 48 53 62 52
NEUTROPHILS ABSOLUTE 1.8-9.0 K/uL 1 0.9 1.7 2.2 1.4
(The last result was one week after my 1st round of Dacogen)


Was originally scheduled for BMT today, but since blood levels improved on their own (no transfusions), it was decided that a couple of rounds of Dacogen could do me good (get blasts lower prior to BMT)...

A few days before my 1st round of Dacogen, my 2nd BMB showed 3% blasts, and both my Hemotologist/Oncologist and BM Specialist felt I should get that number down even more before my BMT...

As you may note in my sig, I consider myself one of the luckiest people in the world, to be happily married, have three wonderful daughters (8-14 years of age), and my youngest brother who happens to be an identical HLA match... (I'm also lucky that I have 5 siblings)...

I'll be posting here ocassionally, and praying for you all...

[Neil Cuadra]

Whizbang,

Here's your blood count history with spacing that makes it easier for us to see your progress.

Component  Standard Range  6/14  6/19  7/18  7/30  8/15
RDW-CV     11.6-14.4 %     18.1  18.1  16.1  15.1  13.8
RDW-SD     35.1-43.9 fl    59.1  58.1  51.5  48.1  40.9
HGB        13.7-17.5 g/dl   8.0   9.1  11.0  11.0   9.9
HCT        40-51 %         23.3  26.0  31.7  32.4  27.8
PLT        150-400 K/ul      70    76    95    91    51
RBC        4.63-6.08 M/uL  2.57  2.91  3.56  3.64  3.29
WBC        4.2-9.1 k/ul     2.0   1.9   3.2   3.5   2.6
NEUT%      34-68 %           46    48    53    62    52
NEUT       1.8-9.0 K/uL     1.0   0.9   1.7   2.2   1.4

It's clear that the Dacogen knocked all of your counts back a bit.

[Cheryl C]

Your post is really interesting, and I will continue to follow your progress. I wish you all the very best for a successful BMT.

[tytd]

Hi Whizbang,
Thanks for posting your story. It is interesting that your counts and blast count improved so much even before the Dacogen. Also the splenomegaly is interesting. I am curious as to what your IPSS score is and what your chromosomal abnormalities are?? I am just wondering why they are recommending BMT if counts are improving unless you have poor prognostic signs with your chromosomes or genetic markers and therefore a high IPSS score. Thanks and good luck. tytd

[Lbrown]

Just in case you haven't seen this from another thread, here is an article about Hematologic manisfestations of celiac disease. In it, they mention several types of anemias and nutritional deficiencies including folic acid and B12.

bloodjournal.hematologylibrary.org/content/109/2/412.full?sid=606a9bbd-0903-4783-a75d-448bb8e8572c#ref-69

Good luck,
Deb

[Whizbang]

Thank you all for taking an interest...

If you take a look at my early numbers 6/14 they look pretty scary... The multiple chromosome abnormalities/breaks (would suggest) that even if my numbers do come back a bit, I have only a short while before things could get out of control... (I was told that 75% of my chromosomes are shot)

I was originally scheduled for 8/19 BMT, but since things got so much better, the two rounds was thought a better approach (pre BMT chemo, instead of post BMT chemo)... I've also read (some abstracts) that suggest less than 3.0% blasts are optimal for going into a BMT...

My IPSS score on 6/14 would appear to be 2.0..
.5 for 5.5% blasts
1 for poor chromosomes
.5 for two out of three low blood scores...

As of 7/30 (second BMB) My IPSS would appear to be between 1.0 & 1.5
0 for 3.0% blasts
1 for poor chromosomes
0-0.5 for one out of three low blood scores...

Nine years ago, I did a full body scan at Princeton Longevity Center as a baseline, and it showed an enlarged spleen - 16.1cm... So splenomegaly was low lying fruit (good first guess) since my prelim BMB showed no AML or Cancer... My spleen measured - 15.6cm this June...

I've been taking a stress B complex (with Folic Acid) for 26 years now, as it's always given me more usable energy... For no other reason that it made me feel better...

[Whizbang]

When I am done with the 2nd round of Dacogen, they will test my BM again, and confirm the cytogenics, I may be gluten intolerant (I show no symptoms), and my sister is diagnosed celiac disease (CD)...

I've read that wheat / corn is not good for my B- blood type (toxic) on WedMD, and that was the impedous for me limiting wheat...

Even if I have silent celiac disease, it don't believe that it would explain the many multiple chromosome breaks/abnormalities??? But I am with you LBrown, I questioned very seriously the rounds of chemo, when I had my second BMB...

Originally Posted by Lbrown

Just in case you haven't seen this from another thread, here is an article about Hematologic manisfestations of celiac disease. In it, they mention several types of anemias and nutritional deficiencies including folic acid and B12.

bloodjournal.hematologylibrary.org/content/109/2/412.full?sid=606a9bbd-0903-4783-a75d-448bb8e8572c#ref-69

Good luck,
Deb

[sbk007]

@Whizbang, My drs have me on the same strategy. 1st stabilize the disease then do the transplant if you're going to do it. One said its not the blood we worry about its the blasts. So, that's probably why that extra round of chemo. Sounds like you have everything going in your favor. Age, Good health, 10/10 sibling match, lots of support, and a great attitude. I don't think Gluten would have any influence on BMB results.
But..If I'm wrong i'd like to know and Im sure someone will see to it that I do..
All the best - Steve

[tytd]

Hello whizbang,
Here is a link to the newer IPSS-R score calculator which puts more weight on specific chromosome abnormalities and #blasts. ( www.mds-foundation.org/ipss-r-calculator) I believe both the IPSS and IPSS-R would only be used on your pre-treatment counts and BMBs. I also get a different score depending on which blast count I use of the 2 initial BMBs I had. It sounds as if your poor chromosome abnormalities are putting you in the category for transplant but it is nice to have a copy of your BMB report which tells you specifically what those abnormalities are. Hope the Dacogen works well.

[Whizbang]

tytd,

Thanks for the link, it shows the importance of getting my blasts in the 0-2% range; if I input my 7/30 numbers into the (IPSS-R) calculator, I am classified as 'High Risk', but lowering my blasts to 2% would get me to the 'Intermediate' category...

Further it also shows the importance of a BMT in my case, sooner rather than later, as sbk007 points out, "(I) have everything going in (my)your favor" at this point...

[Lbrown]

I wouldn't have believed gluten could affect a BMB or anything either, but lately I've done a lot of research and now I am wondering. Your body can react to gluten by producing antibodies against tissue trans-glutaminase, which is everywhere in the body. You can get intestinal damage that can lead to nutritional deficiencies that can affect cell production. Who knows what other kinds of immune reactions.

All I know for myself is that after going on a strict gluten free diet, my long term rash went away. This rash started around the same time as my anemia and was blistery and extremely itchy. For the past 8 weeks, my HGB drops have been smaller, I have less fatigue, my platelets have gone from 27 to 52 and my WBC is up from 0.6 to 1. I know the rash was not a coincidence, but it took almost 5 years to make the association. Only time will tell about the other counts.

Deb

[sbk007]

Originally Posted by Whizbang

tytd,

Thanks for the link, it shows the importance of getting my blasts in the 0-2% range; if I input my 7/30 numbers into the (IPSS-R) calculator, I am classified as 'High Risk', but lowering my blasts to 2% would get me to the 'Intermediate' category...

Further it also shows the importance of a BMT in my case, sooner rather than later, as sbk007 points out, "(I) have everything going in (my)your favor" at this point...

@Whizbang, Where are you having the BMT? I see you are in NJ. The Docs don't care about the IPCC after treatment, they use the score taken @ diagnosis. Wish that wasn't so but it is what it is. My guess is that they're shooting for a stable disease. They must have seen a positive response to the Dacogen that they liked and you probably tolerated it well.
Take Care, Steve

[Whizbang]

sbk007,

I did tolerate Dacogen well, mostly constipation from the nausea injections, and slight nausea, which was compounded by the constipation... I was very tired / sluggish from the 1st round, but I have recovered quickly...

I am receiving chemo at NYU-CC, as they diagnosed my MDS (quickly), and I can NOT say enough about the staff, my Dr., and the hospital as a whole...

As for my BMT, my BM Transplant specialist is at Memorial Sloan Kettering (MSK-CC), so as you can see I am in good hands...

My Dr. at MSK-CC is actually VERY concerned about my IPSS score, and that is why I'm doing these rounds of chemo even though my BMB came back at 3% blasts, the thinking is that the better my blasts are prior to BMT, the less it should be a factor on my recovery (less chance of a relapse)...

God Bless...

[sbk007]

Whizbang, It makes sense. I go to Cornell-Weill/Columbia Pres., same deal get the blasts to zero, stabilize the disease, get better results.
All The Best,
Steve

[Whizbang]

So last Tuesday I noticed (what appeared to be) an ingrown hair under my right armpit; tender, pink and sensitive to the touch, texted the Physician Asst and she told me to do warm compresses, and we'll keep an eye on it... Went to my weekly blood draw on Thursday, and the dr. confirmed ingrown hair (boil), and he said it made sense since my WBC and NEUTROPHILS had continued to fall from the Dacogen two weeks prior, to 1.7 and 0.5... The dr. prescribed Dicloxacillin - 250mg 4 times per day for 7 days...

I've been doing warm compresses for 5 days now, and the boil is no longer tender to touch, and maybe a little smaller in size, but I got another 'smaller' one in the left armpit on Friday...

Is it typical to get these types of infections after Dacogen??

I also added my LACTATE DEHYDROGENASE and BILIRUBIN Totals, any insights on them?

Component  Standard Range  6/14  6/19  7/18  7/30  8/15  8/22
RDW-CV     11.6-14.4 %     18.1  18.1  16.1  15.1  13.8  18.5
RDW-SD     35.1-43.9 fl    59.1  58.1  51.5  48.1  40.9  55.9
HGB        13.7-17.5 g/dl   8.0   9.1  11.0  11.0   9.9  10.6
HCT        40-51 %         23.3  26.0  31.7  32.4  27.8  30.3
PLT        150-400 K/ul      70    76    95    91    51    60
RBC        4.63-6.08 M/uL  2.57  2.91  3.56  3.64  3.29  3.45
WBC        4.2-9.1 k/ul     2.0   1.9   3.2   3.5   2.6   1.7
NEUT%      34-68 %           46    48    53    62    52    31
NEUT       1.8-9.0 K/uL     1.0   0.9   1.7   2.2   1.4   0.5
LACT-DEH   313-618 U/L      693   695   670   598   ---   688
BILIRUBIN  0.2-1.3 mg/dL    ---   1.8   1.5   1.1   ---   1.8

Thanks in advance...

[sbk007]

Whizbang, Did he put you on an antibiotic for the low WBC or the boils?
I had a rash and a few blisters but it was gone in a week and I don't think it was MDS related. Keep in mind we do get ailments that we would have had MDS or not. Hope that's the case and the boils go away. Hang in there.
Stay Well, Steve

[Whizbang]

sbk007,

It's a matter of chicken or the egg... Did I get the boils because of my low WBC's, or did the infection help bring down my WBC's... Probably a combination of both... But the dr. did say they would have to postpone my 2nd round if the infection didn't go away... He said he wasn't as concerned with the low WBC counts, since that is what Dacogen does...

Originally Posted by sbk007

Whizbang, Did he put you on an antibiotic for the low WBC or the boils?
I had a rash and a few blisters but it was gone in a week and I don't think it was MDS related. Keep in mind we do get ailments that we would have had MDS or not. Hope that's the case and the boils go away. Hang in there.
Stay Well, Steve

[sbk007]

Sorry I didn't know you actually had an infection. My WBC got as low as 2.5 my first round of Vidaza (It was 5 before), and my doc contemplated hitting me with a neuprogen shot then he decided to wait a week and luckily it came back up. I do notice that when I go thru these rounds I get the sniffles for a few days, probably b/c my wbcs tank, and then come up. I assume that's the price of Vidaza as well as Dacogen and the others.
Stay Well

[Whizbang]

So since my WBC's have dropped to 1.7 and my NEUTROPHILS ABSOLUTE is .5 (500) due to the Dacogen, I've been getting boils under my armpits and now a sty in my right eye... Not really complaining, as I know it can(and will) get a lot worse...

It's just kind of comical, as I'm juggling two different compresses, on three different spots for 8 days now... (three days before the antibiotics...)

On a positive note, the boils are getting smaller, and the sty doesn't appear to be getting any worse...

[sbk007]

Sorry your having a rough time. Just a word of caution with the compresses on the eye and not to over do it. When I was younger I would get these things called chalasiams on my eyelids, and I was either compressing to often or the water was to hot but I ended up irritating the skin and the doctor told me to stop. Styes tend to go away quick and I hope yours goes away quick.. Hang in there and feel well.

[Cheryl C]

I understand that LDH levels can indicate disease progress (ie level of tissue damage). Bilirubin is tested to indicate extent of liver damage if any. I think it is common to monitor these in MDS patients - I have them done monthly.

[Whizbang]

So as suspected, the dr. pushed my second round off by a week due to the infections, even though they are much better, it appears that I have a slight cold. My neutraphils only went from .5 to .6, and WBC's 1.7 to 1.8...

On the bright side, my other counts are through the roof... So even though I've been fighting off infections, I've been able to walk across town in the morning and after work (10 miles per week), makes me feel more normal...

Component  Standard Range  6/14  6/19  7/18  7/30  8/15  8/22  8/29
RDW-CV     11.6-14.4 %     18.1  18.1  16.1  15.1  13.8  18.5  17.0
RDW-SD     35.1-43.9 fl    59.1  58.1  51.5  48.1  40.9  55.9  53.5
HGB        13.7-17.5 g/dl   8.0   9.1  11.0  11.0   9.9  10.6  11.9
HCT        40-51 %         23.3  26.0  31.7  32.4  27.8  30.3  35.4
PLT        150-400 K/ul      70    76    95    91    51    60   209
RBC        4.63-6.08 M/uL  2.57  2.91  3.56  3.64  3.29  3.45  4.07
WBC        4.2-9.1 k/ul     2.0   1.9   3.2   3.5   2.6   1.7   1.8
NEUT%      34-68 %           46    48    53    62    52    31    32
NEUT       1.8-9.0 K/uL     1.0   0.9   1.7   2.2   1.4   0.5   0.6
LACT-DEH   313-618 U/L      693   695   670   598   ---   688   ---
BILIRUBIN  0.2-1.3 mg/dL    ---   1.8   1.5   1.1   ---   1.8   ---

[sbk007]

Whizbang, that's a big jump from the last test, That's good news.
Did he mention a WBC booster at all? Before I even started Vidaza my doc mentioned neuprogen or whatever its called b/c the demethylizers tend to wack the wbc. After my 1st vidaza rnd my wbc went from 5 to 2.5 and he said we can send you thru then get a booster or wait a week lets do that.. So, we waited a week and it popped back to 4.2. Had it not I would have gotten a WBC booster in the arse.

[Whizbang]

Steve,

I believe that neuprogen (WBC booster) was a last resort, my dr. is/was afraid that it will work against blasts (raise them), and he was happy to just push me off a week...

It helped that I have a cold, he said they would have to wait a week even if they were to give me a WBC booster...

I think it would be kind of silly to take even the smallest risk that my blasts would go up, when the whole idea is to bring my blasts down prior to BMT...

All the best,
Dave

[sbk007]

Dave, I never heard of neuprogen increasing blast counts. Lots of people w/ MDS need them regularly. Blasts are every MDS patients enemy.
In either case I agree its a last resort.