Hypocellular with excess blasts? Alternative therapy

[quantpsyc]

I have spent so much time reading this forum after getting a terrible diagnosis, it was so helpful to help me get my head around it. I decided its time for me to post. After some symptoms of fatigue and an annual physical showing pancytopenia, my husband Ed was referred to hematologist. He was first misdiagnosed with cirrhosis based on an ultrasound (shocking to hear due to lifetime of healthy lifestyle and perfect health). After a bit of bouncing around from gastroenterologist to hematologist and a bone marrow biopsy (note it was a small sample due to hypocellularity), he was referred to Duke for a second opinion. After reviewing the first BMB, Duke confirmed the diagnosis of MDS RAEB2 with blasts estimated at 10-15% and recommended immediate Vidaza and referred for stem cell transplant. Went to Cleveland Clinic for 3rd opinion. They were less inclined to give a definitive diagnosis based on the first BMB, and agreed that it was reasonable for us to request a second biopsy prior to accepting a diagnosis or making treatment decision. Back to Duke, where they performed the second BMB. Also inadequate. This one estimated blasts 5%-10%. No dysplasia observed (but not alot of cells to observe). We noted that had Ed immediately gone on Vidaza, this result might be viewed as partial remission! NGS mutation panel ordered...took a month to get results. We got two bits of good news at once. First, several 10/10 MUD donors had been located for Ed. Second, no chromosomal abnormalities were found that would be associated with MDS! Based on poor samples and lack of chromosome mutations, we talked with our doctors about avoiding chemo and transplant until there were some red flags. After much research we proposed the following as red flags: platelets dropping dramatically (lowest was 100 at Dx), neutraphils dropping and sustained below .5 (lowest was 0.37 at Dx), hemaglobin dropping (lowest 11.7) increase or appearance of symptoms, increased LDH, or appearance of blasts in the blood. Since April, blood counts have generally stayed higher than at Dx. We have been using a number of supplements. Turmeric with bioperine 95% curcuminoids 1500mg, Coq10 800mg, copper glycine 2mg, 5-MTHF 1mg, b12 5000mg sublingual, papaya leaf tea, dandelion root tea, and a month ago added Osteo K minis to the mix. Current CBC has platelets at 112, neutraphils at 0.57, hemaglobin at 12.7, still waiting on LDH (but has always been low), and no evidence of blasts. Most importantly, Ed feels great the last few weeks! And he has started gaining back somw of the 20lbs he lost (he was alreadt a tall lean drink of water, could not afford the weight loss!) In spite of the absolutely dreadful prognosis he was given if he did not get treatment ("1 year...MAYBE 2"), our feeling is that even if this only sustains current levels rather than normalizing, Ed may be able to live and thrive like this for many years. If so we will avoid chemo and transplant for as long as possible, maybe for years, maybe forever

God bless each and every one of us! All prayers appreciated!!
Kathleen

[Neil Cuadra]

Kathleen,

It's cautionary to hear how a bone marrow biopsy where they can't harvest enough cells may affect the confidence in a diagnosis.

Despite the MDS-RAEB2 diagnosis from the first visit to Duke, do you now doubt that Ed has MDS at all? Have any hematologists offered other possible explanations for his pancytopenia?

Despite Ed's slightly low counts, it sounds like you're busy living your lives, and that's great. Enjoy those grandchildren!

[quantpsyc]

Originally Posted by Neil Cuadra

Kathleen,

It's cautionary to hear how a bone marrow biopsy where they can't harvest enough cells may affect the confidence in a diagnosis.

Despite the MDS-RAEB2 diagnosis from the first visit to Duke, do you now doubt that Ed has MDS at all? Have any hematologists offered other possible explanations for his pancytopenia?

Despite Ed's slightly low counts, it sounds like you're busy living your lives, and that's great. Enjoy those grandchildren!

I am a statistician and have worked in clinical trials for 25 years, so numbers are my thing, I really did not like the broad confidence intervals around the blast estimates, and the lack of mutations increase our uncertainty. So yes, we do have our doubts...more so about whether its RAEB or not, as it is clear SOMETHING is wrong with his bone marrow, some other possibilities have been looked at and ruled out. We suspect that 15 years on proton pump inhibitors is related to the problem...maybe years of malabsorbtion? He is no longer taking PPIs; Instead he takes a tablespoon each of apple cider vinegar, lemon juice, and honey in 8oz of water morning and night, and is completely free of the awful GERD LIKE symptoms he was suffering from (the turmeric also helps with this). Endoscopy (after the Dx of cirrhosis) did not show the esophogas of someone with GERD for 15 years! Whatever this is we feel like we are at least keeping it from getting worse, and in fact Ed is feeling much better than he was 4 months ago, and his counts have improved. While the doctors are agreeable to our "active survellience" we do get the impression that the MDS doctors are humoring us, and see it as inevitable that Ed will need "real treatment" and transplant. If that has to happen, then he will go that path, but only after giving the alternatives a chance.
A Christian musician/comedian we like, Mark Lowry, has a skit about "God is in the interruptions." It is so true, and this is one of those interruptions, and God is here with us. Bless everyone having to deal with these issues! And again, thanks everyone who takes the time to share on these forums, it has been so helpful for us!

[Bossywife]

Your post really struck me because of the PPI comment.

Years ago before my husband was diagnosed, he was on PPIs and took them regularly for a couple of years. One day I was thinking about his pills and I thought to myself, "how can these be healthy to your stomach acid?". So I asked my doctor and he told me no one should be on them for longer than a month or so. I was shocked and I brought it up to my husband, who then asked his doctor and she agreed. Now i'm wondering how much this played in his diagnosis.

So fast forward a few years and we find out he has RAEB-1. His first 2 BMBs were dry taps. He just had a BMB at a larger centre, and I think they got a better sample. Waiting to hear.

But if your husband's second BMB was 5%-10% blasts, wouldn't he be downgraded to RAEB-1? I'm only asking because somewhere during our journey we were told he was RAEB-2, but then he was RAEB-1 when his blasts were found to be 5%-10%.

Just curious It's hard to keep track sometimes of all the stuff that is thrown at you.

[quantpsyc]

Hi bossywife (ha love the user id!)
Interesting, I think I should do a survey to find out the true incidence of the mds/ppi association!
Technically, if Dx was to be based on the (unreliable) BMB then yes, he would have been downgraded. But, instead the doctors just said..."seems like it's difficult to get an adequate BMB from you"...and "blast estimates between 5% and 15%" Given the whole picture, unreliable BMB and no MDS mutations in chromosome we still question the RAEB part of the Dx. So far my hubby is feeling much better than 5 months ago, and his counts are stable, and somewhat higher, than in April So far, heme/on says keep doing what you are doing. Tomorrow we get more blood work. Will post an update.

Please let me know how your hubby's last BMB and gene panel turns out. I would like to know if it's possible to get a good BMB if one is truly hypocellular (one of Ed's was done locally, other at DUKE, both "inadequate" samples)

Kathleen

[Bossywife]

The "Bossywife" is because my husband's favourite hockey player is Mike Bossy. I'm only as bossy as I have to be... which, I guess, is usually quite bossy.

My husband's blood work numbers got significantly better after we added B12 and Folic Acid to his diet and removed Aspartame. I wanted to give him Turmeric, but he drew the line there. The other thing that happened at the time when his numbers improved was that he got his diabetes under control (less sugar). We notice that when he has more than usual sugar or alcohol (like around Christmas) his numbers kind of go South. Nothing serious, but enough to get his wife nagging.

His Platelets hover around 50-90. He has been like this since 2008 that we know of... possibly earlier undiagnosed. I'm not sure if I told the story in this forum, but he was hospitalized for some kind of infection. His bloodwork was all low. His WBC went down to 1.5, lymphocytes 0.5, neutrophiles 0.9, RBC 4.1, platelets 52 and MCV 29.1.

It was terrifying... and he was also diagnosed with Type 2 Diabetes that day. After a couple of rounds of antibiotics and a 4 day stay, he was released with instruction to get his bloodwork checked every 3 months for Diabetes ... no explanation for the other bloodwork issue, other than he had an "infection of unknown origin".

Fast forward to 2015 when I started to get annoyed by his bloodwork being all over the place. The doctors would just say that sometimes people have low platelets for no reason. His whites fluctuated between 2.6-3.9, his other numbers were frequently low with no rhyme or reason. I insisted on a bone marrow biopsy (bossy me haha) and low and behold, they were all surprised to discover he had MDS RAEB-1.

I often wonder if they would have left it that long if it were their loved one. But I try not to obsess about those kinds of questions. Stay positive Laura!! Stay positive!!

Now we are just on watch and wait, with testing monthly so that he can continue playing hockey (if his platelets go below 40, he can't play... so far so good). We did find out that his brother is a perfect match (I call him my "Spare Parts Husband" now) I'm curious about the findings of the genetic testing and will post as soon as I know.

Sounds like our fellas are about the same in some ways with this disease. If you are on Facebook and ever want to chat, my name is Laura Waite in Prince George, Canada. Also, I have 7 grandchildren