New member, new story

[Darice]

I'm pleased to have found an active forum on bone marrow failure and MDS. My husband has recently been diagnosed with secondary, or treatment-related MDS. We know this is the tougher type to treat and bring under control. I'm here to learn as much as I can so I am ready to help him in the battle. Sorry in advance that this is going to be so long, but he is complicated.

He was diagnosed with non-Hodgkins's Lymphoma in 2001. There have been something like 6 recurrences and we have treated with various chemos, radiation, and surgeries until a stem cell transplant (auto) in 2008 killed it dead. He had a brain tumor at the beginning that may or may not have been part of the NHL; it was never biopsied. They shrank it with heavy duty steroids and then put an Ommaya reservoir in his skull and ran 18 or 24 (I forget which) rounds of intra-thecal methotrexate. In 2009, he had basal cell carcinoma and Mohs surgery. In November 2010 he was diagnosed with transitional cell carcinoma in the right renal pelvis. It has been treated surgically and with intravesical mitomycinC. Had cysto/ureteroscopy June 7 (all clear) to clear the path to begin treatment with Vidaza. I believe there have been eight or nine distinct/different chemos with at least one more than once. I guess that gives us plenty of reason for this to have happened.

Over the years we have had trouble with blood counts, and they have been a long time coming back following the stem cell transplant. Always seemed to be an explanation for the drops (several pneumonias, H1N1, etc.) until mid-March: WBC 1.3, RBC 2.17, HGB 8.3, HCT 24.2, PLT 41. No reason. Bone marrow biopsy . . . they suspected return of the NHL . . . turned up (after almost 2 months) the t-MDS. Another BMB mid-May confirmed and further defined. I don't yet get all the terminology, but I'm pretty good at it after 10 years of cancer battles. The t-MDS is harder to type, apparently, but is closest to the RCMD. His IPSS is 1.5, or intermediate-2. I know he is further complicated by other conditions: diabetes, hepatitis B (probably from early transfusion or procedure) A-Fib, and general weakness from all the battles.

I don't understand all of the report from the BMB. I know he is "positive for 7q deletion/monosomy 7, 51.5% of cells." And I know that's not good news. There is all sorts of discussion about particular odd cells, but the bottom line seems to be:

Cellular bone marrow with trilineage hematopoiesis exhibiting dysplasia in all three hematopoietic cell lines.
Increased storage iron with abnormal iron incorporation and ring sideroblasts.
No evidence of transformation to acute leukemia or involvement by lymphoma. {that would be the good news}

I saw other chromosome stuff, but a particularly worrisome note was in listing notes from previous studies (I'm assuming the March BMB) indicates "positive for deletion/monosomy 7, 30.3% of cells." I guess that means the involvement has increased from 30.3% to 51.5% over two months? I don't think this is good news.

My husband is a fighter, but this sure looks to be the biggest battle yet. We are to start with the Vidaza on Monday (13 June) and will do 7 days in 28 and repeat. I understand it may take up to 6 months to determine if this is working. I spotted a thread where Vidaza apparently caused a drop in blood sugar level, so will be alert to that. I do know the prognosis is not good, but we're ready to put up a damn good fight. Any advice and support is welcome.

I like the signature lines and that it lets you know where the person is in the battle . . . trying to figure out what mine should be:

Darice, wife of Jens, male, 70, diabetic, HepB, A-Fib. dx NHL (follicular --> B-cell) 9/2001, BMSCT (auto) 5/2008 (dx BCC, 5/2009/Mohs, dx TCC rt renal pelvis, 11/2010/surgery/MMC), BMB 3/2011, 5/2011 --> t-MDS: RCMD, IPSS 1.5 (Int.-2), trilineage hematopoiesis/dysplasia, inc. Fe, ring sideroblasts, 7q deletion/monosomy 7. Start Vidaza 6/2011.

Please let me know if I've got the jist of it there

Thanks

[Greg H]

Holy Moly Darice!

Jens -- and you -- have certainly been through the ringer! I am glad you found us, too, because there are a bunch of folks here with all sorts of MDS who have plenty of information -- and support -- to share.

As you have already figured out, secondary MDS is tougher than the de novo kind. And Monosomy 7 is just about the worst single chromosomal abnormality out there. It generally prompts MDS specialists to move aggressively, so it's not surprising that you are moving right into Vidaza.

I guess that means the involvement has increased from 30.3% to 51.5% over two months?

This gets a "maybe." Typically, when they do the cytogenetic analysis, they only type 20 cells. If you've messed about with statistics at all, you know that is a pretty measly sample. I haven't been able to get a straight answer on the actual margin of error, but it's pretty clear form my own results that a 20-point swing may be within that margin of error.

For example, I had a BMB last October that showed 50% normal and 50% with two chromosomal abnormalities. A month later, I had another BMB that found 45% normal, 30% with one of the abnormalities, and 25% with both. Nine months later, I had 30% normal and 70% with both abnormalities and the same pathologist pronounced my cytogenetics "essentially unchanged."

I double-checked with my physician researcher, who was also non-plussed about the change.

So I wouldn't put too much emphasis on the percentages, unless they continue to increase over time. Finding new abnormalities cropping up, on the other hand, gets the docs excited. That's "clonal evolution," and suggests disease progression.

I'm pretty good at deciphering the cytogenetic gobbledygook, so, if you want any help on that part of your report, post the code and I'll try to take it apart for you.

Welcome! And take care!

Greg

[Darice]

Oh, thank God . . . someone who understands! You do get a lot of blank stares with this disease. I had actually spotted several of your posts and visited your blog before I posted, so I'm really happy to hear from you . . . you already feel like an old friend

I was heartened to read your explanation of the numbers/statistics . . . I looked, and it seems they sampled 200 cells, which is still a pretty measly sample. I can put aside stressing over that particular issue. Lots of room for stress elsewhere.

I will get out the report and type in more of the gobbledygook and let you loose with it, but I'm going to leave that for tomorrow 'cause I'm dead tired now. It's been a rough day; Jens has been particularly weak and has fallen four times. We can't keep this up.

Thanks again for your reply; I'll get more up tomorrow and look forward to your input.

Darice

[Greg H]

Hey Darice!

Don't be fooled by my blog and posts -- there are lots of folks around here who know more and have a lot more experience than I do. I'm just naturally curious and tend to blather on.

Sorry to hear that Jens had a bad one; one thing about MDS, every morning tends to be a bit of a surprise in terms of energy level. I just had an RBC transfusion, so know I think I can take on the world. Give me about three weeks and my behind will be dragging. My wife has learned to capitalize on the higher energy times: yesterday we replaced some rotten weatherboarding on the house and moved some scaffolding around.

I hope the Vidaza goes well for you guys. From what I've heard from other folks 'round here, it's real important not to be discouraged by dropping counts and no improvement through the first few cycles.

Take Care!

Greg