Husband diagnosed 3 days ago

[RC813]

Hi to all you very brave souls and I want to start out by thanking each and everyone of you for posting your experiences. From my limited research, I've learned that this is a pretty rare disease, yet here we all are..go figure!!

We are feeling overwhelmed as this dx of MDS came up outta left field for us. I still can't even pronounce the name of the disease so thankfully it has a nickname!!

Our story is that Eric, 49, was put in hospital at the end of July for kidney stones, possible diverticulitis, fever, extreme tiredness. He works at the VA hospital in St. Petersburg, Fl and gets treated at same. Had a team of docs all trying to figure out why he was so ill as it couldn't all be explained by kidney stones. After a week in the hospital, they discharge him and gave him f/u appts with primary care doc.

Lab work showed extreme low wbc, platelets and red blood so doc admitted him again and they labeled him as "neutropenic". So he wore mask and everyone who entered wore gloves and after 4 days of tests, they decided to give him a shot to boost his wbc and again discharged him.

All this time, I kept thinking, where is Dr. House when you really need him??? Seems to me that docs have a hard time dxing this disease because it is rare and even rarer in patients under 60, from what I have read.

They talked about a possible bone marrow biopsy but never told us why and for whatever reason, decided to just discharge him.

Thankfully, his primary decided to send him to onc doc who immediately scheduled the biopsy. We are still in a bit of shock. He had lost a ton of weight during a short period of time, but he was also sick from the kidney stones and diverticulitis so we attributed it to that.

Currently, he feels fine, appetite back. He had been extremely pale and as I understand it, that is from low wbc, and even though it's still low, he is feeling fine. Count our blessings?!!

His doc told him he has less than 5% blasts and good cytogenetics, I'm not sure what his subtype is but will find out next week when he goes for more labs. Doc said his bm looked like that of an 80 yr old and that is pretty worrisome to hear. He also can't believe that he appears as healthy as he does.

He told him that he would be neutropenic for life but didn't tell him about any diet as such. We looked into it when he was in hosp last time and keeping away from raw fruits/veggies, but that is so not easy as I am vegetarian and thinking how he is going to build up needed strength? Any thoughts on this would be most appreciated.

Looking forward to reading and learning from your experiences. I suppose the beginning of any new journey is overwhelming, but this can be a very scary journey to face.

[Neil Cuadra]

Hi Robbie.

I'm sorry that you and your husband have to learn words like myelodysplastic syndrome. But if MDS has become part of your life, you're doing the right thing by asking questions and learning about the disease.

Since all three of your husband's counts are low I'm surprised they didn't recognize it as bone marrow failure sooner. In any case, the doctor he was referred to is a hero for knowing that a bone marrow biopsy was the right test to do. There's your Dr. House.

You'll presumably know the subtype soon and suggestions for treatment. Given that Eric's counts are "extreme low" he's too young to think that MDS is simply something to live with. I don't know why a doctor would say he'll be "neutropenic for life". One of the primary goals of MDS treatment is to bring counts back into the normal range.

Did you request the free information packet from the Aplastic Anemia & MDS International Foundation? If not you should.

Diet changes can't cure faulty chromosomes but they can keep patients less susceptible to infection. You'll find several "neutropenic diet" discussions in these forums. It's possible to maintain strength with a vegetarian diet. It just has to be nutritionally sound. Having a normal appetite certainly helps!

Anemia (a low red count) is what makes patients pale. A low white count isn't directly apparent. Bruising and little red spots on the skin are visible signs of low platelets. One of the curses of MDS is that you can look perfectly healthy or seem to have only minor symptoms like a paler-than-usual complexion.

Having less than 5% blasts is a good sign. "Bone marrow like an 80 year old" means very low cellularity (not many blood forming cells). Since the doctor says Eric's cytogenetics are good you should ask why the doctor considers it to be MDS. From what you've said so far a diagnosis of aplastic anemia would also fit the clues. I suggest that you ask for copies of your husband's blood counts (called CBCs), so you know the specific numbers. You can ask for a copy of the bone marrow biopsy results too. That report will be full of technical lingo but it's possible to learn more by deciphering it or asking a doctor to interpret it more specifically.

You're doing the right thing by learning how to help yourself. I wish you both the best of luck as the nature of Eric's illness become apparent.

[tytd]

Hello Robbie,
I just wanted to mention that AAMDS is sponsoring a conference in Tampa for patients and families this coming weekend. You also have the advantage of having Moffitt Cancer Center in your town which has several MDS researchers there, including Dr. Alan List. I agree with Neil that you should ask your hematologist if the bone marrow showed dysplastic (funny looking cells) which would need to be present to diagnose MDS without any cytogenetic abnormalities or excess blasts present. AA or other problems could be possible if the bone marrow showed very low cellularity. How low are Eric's counts? Good Luck and I hope you and Eric can get to the conference as they are very helpful. Tytd

[RC813]

Hello Neal,

Very good points you raise Neal. This is so new that I haven't even had a chance to speak to the doc yet. He knows we have a lot of questions and has given us several web sites to check out. The Leukemia Society, Nccn.com and emedicine. From google, I found several others and know that not all are current and lots of convoluted info to weed through. Which is why I am very glad to have found a place where people have first hand knowledge and willing to share.

We will get copies of cbc and biopsy next week when he goes for more labs. Eric works in same building as his doc and luckily his doc has open door policy. I think he wanted us to check out the web sites and process so we knew what to ask.

Even after reading all the info, I'm still not sure I know all the questions to ask but will start writing them out to prepare. If you have any suggestions on a list of questions to ask, I'm all "ears"...

His doc had told him that for now he would monitor him every 3 months but as you pointed out, that doesn't seem to be very proactive. Although, I am personally not a big proponent of drugs and would rather look into holistic approach, this is not about me.

I just assumed that the doc meant because he is early stages he would not do anything to treat but you are saying he should be treating the low blood counts. And that is precisely the kind of info I need and I can't thank you enough for leading me in the right direction. It makes alot of sense since it seems to me that this disease is a double edge sword in that it's not just an advanced symptom of disease but the very real threat of infection with a low to non existent immune system.

I haven't yet requested the info packet as I figured most of the info can be found on various web sites, but will defer to your expertise.

Thanks again for being here.

[RC813]

Hi Tytd,

How do I find out more about this conference in Tampa? Is it this w/e or Oct 22? Can you give me the details or provide a link, as I would love to go.

As I told Neil, we will get a copy of Eric's records next week when he goes for more labs. I know his wbc was at 2.1 and prior to that was at 1.8 but don't know the exact numbers or how the doctor came to his dx.

I know Moffitt is highly regarded, which brings us to the interesting debate, is MDS cancer or pre cancerous? Seems to be a major controversy among the medical community.

[tytd]

Hi Robbie,
Go to the home page of this marrowforums website and there is a link to the Tampa conference info on the upper right hand side under "News and Events". It is free and you should be able to get a registration form with this link. If you could get copies of Eric's CBCs and bone marrow report prior to the conference , I think you will get more out of it. Tytd

[Ryan Jay]

Think of MDS like this...

Imagine your bone marrow as a beautiful lawn....

In Aplastic Anemia: There's a crazed gardener spraying an otherwise healthy lawn with herbicide killing everything. ATG whacks him on the head and Cyclosporine keeps him cuffed to the ground.

In most forms of leukemia: You have giant ugly weeds growing in the middle of the lawn. Pretty dramatic, but in most cases it's easy to target them and leave the lawn alone.

In MDS: You have something like crabgrass. The lawn is kind of weedy, but its harder to treat the MDS "weeds" without hurting the healthy lawn too.

[triumphe64]

Tampa Conference

http://tampa2011.aamds.org/Markslist...dCode=99VH4VEO

[Neil Cuadra]

The AA&MDSIF has a suggested list of questions to ask doctors. It's mostly questions about treatment but there are also some preliminary questions you might want to ask: What's my diagnosis, why, and how sure are you? What do my symptoms and my specific test results tell us? What's actually going on in my body? What other tests do I need and why? Can I live with with disease or do I need treatment? What's the whole range of care and treatment approaches? What should I be doing day-to-day (e.g., diet or lifestyle changes) to get better or not get worse? What do I need to learn to let me be a partner in my own medical care and what sources of information are most reliable?

Keep in mind that we at Marrowforums are patients and family members who have learned from our personal experiences so we can offer advice as your peers while the doctors are the real experts on the diseases and treatments.

[Marlene]

Also, take a look at what drugs he was on to treat the diverticulitis and kidney stones. Drugs can effect your bone marrow production. Antibiotics can suppress the bone marrow and even cause Aplastic Anemia. Like Neil stated, if the cytogenetics are good, you may be dealing with aplastic anemia.

[RC813]

Thanks for the link to the questions Neil. It will be very helpful when Eric see's his doc tomorrow.

He will be coming home from work today with all his records so will try to decipher what it all means.

Ryan-I always knew my husband was crabby!! Thanks for the analogy. Hope all your lawns are being maintained properly.

Triumph-thanks for the link to the conference, I got him all registered to go, he will only be able to attend a part of it and I had previous commitment so can't attend but hoping to get a lot of info.

Good point Marlene about the meds he was given for kidney stones and divertuculitis, I know they had him on heavy duty antibiotics, I believe it was flomax but not sure what else. I have asked several docs if meds or his stents could have anything to do with this. He had 2 stents (the medicated kind) put in at the end of June and has had problems since. But they all say no, would have nothing to do with this.

Hopefully will get more answers tomorrow after more labs and seeing the doc.

Thanks again for all your help and concern.