My mom recently diagnosed MDS - need some help!

[SurvivorGirl007]

My 71-year old mom was diagnosed last winter with MDS and is on 10 mg. Revlimid daily plus gives herself B12 injections daily. Her father, in his later years, also required B12 injections. Problem is, she has not shared any of this info with me - or her two siblings - even though promising my dad she would. My dad has been the one to let me in on the diagnosis, but I'm sworn to secrecy, not even to tell anyone else in the family. Because I have my own set of blood disorders (suspected hemochromatosis due to enlarged red blood cells, very high hematocrit for a 49-year old female (18.5), abnormally high liver function enzymes and elevated anticardiolipin), and my mother (a former RN) knows about all my health issues, AND my two adult daughters also have the same blood disorders I do, I am floored that she has refused to share her diagnosis with me. I see it as negligent. My mom also has abnormally high liver enzymes. Anyway, I wanted to know if any of you MDS patients presented with abnormally shaped and/or enlarged red blood cells. What about high liver enzymes? I am far from anemic, as you can see by my numbers, but my own doctor has been perplexed about the high hematocrit and enlarged rbc's. The liver is throwing him off, as well. Can anyone help me? Thank you so much.

[Marlene]

I'm not sure I could keep that secret for very long. When John first got ill, we did not share the news with everyone until we got a final diagnosis and were working on treatment plan. This was only because we did not want everyone sitting on pins and needles like were while they determined if it was leukemia, MDS or SAA. It could be your mom is having a difficult time dealing with her diagnosis and has some fears she needs to figure before she lets everyone know. At some point, I would have to address it with her in loving, caring way. Just let her know that you know, and when she's ready to talk to you about it, you'll be there for her.

Your current medical description generates more questions for me. I assume you have been tested hemochromatosis and if your FE/iron is high, you've been doing therapeutic phlebotomies to reduce the iron. Depending on long you've had elevated iron, it can impact your liver. I also assume your B12 and folate are in the mid to upper level of normal. Most everyone over 50 will start having lower levels of B12 because they are not pulling it out of their food as well as they used to. But since your mom and her father have/had issues, you may as well. Low B12 or folate can cause larger red cells.

Have they checked your EPO (erythopoietin) level to see if they are elevated? EPO stimulates the production of red cells and is produced by the kidneys.

[SurvivorGirl007]

Thank you for your thoughtful reply, Marlene. I would like to let my mom know that I know about her diagnosis, but she has instructed my father NOT to talk, so I don't want to make trouble for him. Poor guy, he is emailing ME to ask if I can get info on MDS for him so he can understand it (he didn't even know that MDS was an acronym). My mom hasn't even told him what it really is, and she was diagnosed nearly a year ago ...

Anyway, I've never been formally diagnosed with hemochromatosis, so I'm not being treated for it. But I do recall reading somewhere that iron overload impacts the liver, and you've just reminded me of that. I've also not been tested for EPO. I have a physical coming up in December and will send a note to my doctor ahead of it asking if he thinks it prudent to check, given my history and now my mom's, too. Thank you so much!

[Neil Cuadra]

SurvivorGirl007,

The sooner you find a way to get this out in the open, the better, because then you and your dad can make a better support team for your mom. But I understand that you want to respect their wishes and not cause problems for your dad.

It might help if you order the free MDS packet from the Aplastic Anemia & MDS International Foundation for your dad and for yourself too. You can both learn more about MDS from it. Perhaps if your dad put it on the coffee table it would lead to a more open discussion about it. And if you get a chance to visit them while it's in the house it might give you an excuse to ask your mom if she has MDS.

[Marlene]

Spend some time on the iron overload link before your dr's appt, you can ask for the tests recommended here. In addition to iron testing, get your b12, folate, copper, zinc and b6 checked. B12 needs to be at least at 500.

http://www.irondisorders.org/iron-overload

High iron in women may not show up when they are menstruating. But once they stop, it becomes more apparent.

Regarding your mom and dad....another approach would be to put it back on your dad and tell him to come clean with your mom in that you now know. Because at some point, you are going to slip and say something. Keeping secrets is very stressful and apparently, it is for him. I always remind myself that once you tell one person, it is no longer a secret. What is the worst thing that can happen?

[SurvivorGirl007]

Thank you both, Neil and Marlene! I like the idea of ordering the MDS booklet and will do that right away. I also agree that this is the kind of thing that needs to be brought out into the open, but in all honesty, my mother will punish my dad to no end. He's actually afraid of her. She needs to see a psychiatrist as well as keeping a hematologist. There's a lot of pathology involved. At any rate, I will order the booklet you mentioned and also ask my doctor to check into my B levels, etc. at my upcoming appointment.

Again, thank you!!!

[Marlene]

So sorry to hear that about your mom and dad's situation. It does complicate matters for your dad. Maybe he would benefit from a support group.

[cathybee1]

Here's what happened to us.

After the doctor told Bruce last year that he had a suspected case of myelodysplasia, Bruce went "into his cave." He didn't want to talk about it. He didn't want to know about it.

It was one of the most stressful times for me during our 25 years together, because it was one of the only times that he wouldn't let me talk to him about what I was learning about the disease. This group was my respite then...I read every post here. It was a very long 3 months. Your father has been living with this much longer than I did. So I can appreciate what your father, and now what you are going through.

This time may be your mom's time in the cave. Especially if she has been treated since last winter with Revlimid. Perhaps she is responding well enough to it that she doesn't want to worry her family. But that doesn't mean you can't support your dad in the meantime. Your understanding of the disease and helping him understand might help both of you when your mom decides the time is right to share this information with you.

I also wanted to share that my husband has had elevated bilirubin for years, and is a carrier for one of the 2 hemachromatosis genes. There have been opinions by numerous doctors the past year about what is the chicken and what is the egg or whether the suspected hemachromatosis is even implicated in his anemia and neutropenia. Bruce is electing to undergo periodic transfusions for now.

[SurvivorGirl007]

Thank you, Catherine, for your thoughtful reply. I am beginning to see that the "cave" aspect of dealing/not dealing with MDS is very real. It could very well be that my mom doesn't want to worry us - at least I hope that's the reason she's not shared this with the family. This gives me something to ponder, though, and I really do appreciate it and wish you and your husband all the best. (Thank you for sharing the elevated bilirubin info, too).

[SurvivorGirl007]

By the way, Neil, I ordered the packet on MDS off that link you posted for me, and it came in today's mail. The info is comprehensive and so easy to understand. I emailed my dad to let him know that I had it and sent him a link, as well. Thank you!