[maggiemag]

Beautifully said, Cathie. What a shock to have things turn so rapidly; I just do not get it. I don’t know what to say, but prayers are on the way to Laurie’s family.

Mags

[maggiemag]

Welcome Jeanie! Glad you have found us, although I’m sorry that you need us. If you haven’t already, I suggest calling the MDS foundation that runs this site, and have them send you the free booklet about MDS. It is over 100 pages and very comprehensive. It is also very easy to understand, IMO. You can find answer to pratically any question you might have.

Mags

[maggiemag]

OT:

Nope, I have never heard of Logan! Never heard of Hocking County either! Sorry, I do have a vague idea where Athens is though. I go to Cincinnati Heme/Onc which is a pretty big group, and I would be going to Christ Hospital I guess if I needed inpatient treatment.

Mags

[maggiemag]

ABD,

Sorry, apparently I had forgotten that you had mentioned your platelet count already in your post. Personally, I would get a copy of all my tests, especially the bone marrow biopsy. An elevated MCV is not horrible per se, and they must’ve checked all the usual reasons like vitamin deficiency and all. It is a VERY good thing that you did not have chromosome changes, though. Please impress upon your onc that this time you are also watching a toddler. Is your family supportive? That could be crucial, and you have pretty many weeks left til delivery. Also, I think there aren’t any other viable options to battling the anemia, other than tx. They just don’t work. I myself went through 10 infusions of Venofer before I had a BMB. Didn’t change my numbers at all.

We will be here for you as you wish!
Mags

[maggiemag]

Hi Adb,

I have never heard of anything like you had either, sorry to say. Did you have abnormal cytogenetics as well, with chromosome changes? I am not certain, but I don’t believe abnormal ones ever change back to normal. So I suspect it wasn’t a true MDS. Zoe’s stress idea makes a lot of sense. I would keep a close eye on it all, and especially avoid people with infections. Are your white counts and platelets normal?

As for the fatigue, below 8 sounds too low to me, as that could also harm the baby. It is added stress on your heart. I would consider getting your obstetrician on your side, and politely demand a tx at a higher level, like 9. Trying to work and being pregnant and being anemic is just too much. You could also switch oncs, although you might not want to. Please let us know what happens.

ps Zoe, I see you are in Ohio. May I ask where? I am from Cincinnati.

Mags

[maggiemag]

Thank you, Marlene. I do know what level of Hb requires a transfusion. I already have CHF, so the heme told me I would probably need blood at 8.5. I was just wondering what that translated to as far as the RBC level. Is mine mildly low or moderately, at 3.1?

[maggiemag]

Great job, Cathie! Stability is a good thing in this business. My Hb today was 11.1, so I am also holding steady. It’s still very early in the game for me with the RA and 5q-. I have only had the one BMB so far as I was just preliminarily diagnosed in May of this year. I must be atypical as I did not find it to be a big deal. On a scale of 1 to 10, it was maybe a 4 for about 8 seconds. They kept telling me to take deep breaths and were patting my shoulder, and that I would feel a lot of pressure, and I never did! Thank you God. I hope the next one is as easy, but this month I have dodged it once again.

As far as a BMT, I would do it if they recommended it and if the donor was good enough. I would go to a major center that is the best in your country, even if I would have to travel a bunch. The best ones have the most experience with all the complications. If you choose to do this, you might want to start reading the Leukemia and Lymphoma Society message boards. They are extremely supportive and knowledgable. They are very positive and there are numerous 5 year survivors for AML, for instance. The MDS section of that board is not very active, but the BMT section is very active. You might want to check it out if it doesn’t scare you too much!

Hope this helps!

Mags

[maggiemag]

Katydid,

A CBC is a complete blood count, where they get your hemoglobin and white cell count and hematocrit and all from. A VERY important blood test! I have actually started a spreadsheet with my CBC info on to keep track easily and look at trends. I have found, through my other diseases, that it is really important for us the patient to know our stats as the physicians have so many patients and can’t remember everything. Their records may be sketchy even with the best of intentions. We can save ourselves some unnecessary labwork or other tests if we keep current records. Being an RN anyway, I am compelled to know! Knowledge is power, after all.

I have some sort of upper respiratory infection right now. Most of my symptoms sounded exactly like H1N1! I was talked into seeing my primary physician today to make sure, and I don’t have it! Being at higher risk to start with, plus being on Prednisone means I have to be more careful. Ugh.

Hope all are having a great day!
Mags

[maggiemag]

Hi Katydid! I am back from vacation, and feeling ok. My h and h are still relatively stable and have not yet needed a tx. I am still on watch and wait so that is what I will have to live with from now on; CBC to CBC and BMB to BMB. Life goes on……….!

Oh, I forgot to mention that I got another opinion from the Hutch in Seattle. One of my sons lives there and the airfare went down 50% so I made res and thought I would go see someone at the Hutch. They asked for my records and then told me that they would not do anything different at this point. There are no trials that I would qualify for at this point. I didn’t even have to see them, since my trip is in October ;-), they just reviewed all my records. But still, it is reassuring that my heme would be on the same page as the world-renowned people.

Mags

[maggiemag]

Hi Janet!

Is your family member a physician who is telling you to stop the Fosomax? Or better yet, are they in oncology? If not, do what both your doctors are telling you to do! I recently started on Boniva for osteopenia and no one has told me to stop that.

You can check with the MDS Foundation but I think your second opinion hospital is on their list of MDS centers. My brother lives there and I had thought about traveling there for another opinion. At this point I would stick with that one, personally. But that’s just my opinion. 🙂

Mags

[maggiemag]

Cathie, I think the worst part is when you realize that we aren’t talking about someone or reading about someone else………OMG it is ME who has the disease! Like you said, we are ALONE in this, really! It’s just so different than talking about Great Aunt Betty or your next door neighbor who has some really serious illness; it’s ME!

But I have been through this kind of thing before, unfortunately. In 2002, I had to abruptly quit working due to a severe cardiomyopathy, which is a heart muscle disease. I was told I would need a heart transplant eventually. Well, guess what? They were wrong! I did get social security right away though. My reaction this time is *what now*? Only picture me screaming this! 🙂 I told the heme that I didn’t want to have to learn another disease! Heme/onc was never my area.

I will say though, that whatever I have, it is early and may not progress for years. Or it could be 3 months, who knows? And the other good news is that I actually have an identical twin! So I have the perfect match should I ever need a BMT, if I’m already not too old by then!

You are right, Cathie, about the still looking fine thing. People look at you like you are exaggerating a tad. "Well you look fine!" I have actually resorted to showing family members lab reports and my bone marrow biopsy report. When I was fist diagnosed with the heart thing, and I was in bad shape then, I did lose a bunch of friends. They just disappeared, never to be heard from again. I don’t know if they were afraid they might have to do something to help me or what. It was a big slap in the face, I felt. But then they weren’t real friends I guess. I had no family where I lived then. I eventually did move back to Ohio where I grew up and have 3 sisters.

So I am glad you are feeling better about this site, and we are all on the same page! Keep us informed.

Mags

[maggiemag]

Hi everyone. I don’t think I have posted on this site as yet, but feel compelled to respond here!

I think I understand everyone’s viewpoint on this topic. I don’t really believe that anyone was trying to be mean. Hunter Bob’s wife stated her initial reaction to Cathie’s post, and I admit I had the same reaction.

BTW, I AM a patient and not a caregiver on this site. I was just diagnosed with early MDS; I am 61(not as young as you, Cathie!) and have RA with 5q- chromosomal clonal defect that hasn’t evolved enough yet to see which blood malignancy I will get. I also, like Cathie, found it a bit disconcerting that most who seem to post here, are caregivers and not the actual patient. I find that a little frightening, actually, especially at first. But when you realize that it is usually the elderly that get MDS, I guess it is understandable that they aren’t the ones posting. So I got the impression that she really wanted to hear about how we cope, but from the patient’s perspective. So I *do* get that.

Anyway, and sorry this is so long ;-), I am so sorry that your family has had to deal with so much adversity in such a short time, but I do think this is where we will get the most accurate information. No one was suggesting that you all live in squalor and don’t use the proper hygiene! As you research further, you will find that it is *standard* care to EMPHASIZE strict handwashing when the patient has low white counts and is immunocompromised. As you read further, you will find mention of the special neutropenic diet. (I am also an RN folks.) Knowing our *numbers* and taking these precautions is just common sense. Dealing with this disease means dealing with all the feelings and fears, but also the practical facts like our counts. It is ALL very important, in my view anyway. Cathie may feel differently about some of this stuff as the disease continues. That is what was meant by saying she just wasn’t sick enough, or at least that was my impression.

I hope I haven’t added fuel to the fire, but just some random thoughts by a new patient!

There is also another message board that I have found with the Leukemia and Lymphoma site. There aren’t as many people there with MDS though.

Cathie and family……….if you haven’t already received it, I highly recommend calling the MDS Foundation who sponsor this site, and ask for the free 100 page booklet on MDS. It is extremely informative, and supports a lot of what has been said here.

Good luck to all of us in this stupid fight!
Mags

[Author]

Posts