Broken Leg

[Bossywife]

My husband has MDS RAEB-2 and is currently on "watch and wait" with monthly bloodwork and no medication (other than vitamins). WBC and RBC are on the low end of normal, and platelets hover at about 50-60.

He broke his leg and ankle on the weekend playing hockey. The ankle required surgery with pins/plates. I'm wondering if there is anything we should be watching out for... obvously infection would be bad, but has anyone heard of a broken bone or surgery causing problems for MDS patients?

[bailie]

I am curious why they have your husband on "watch and wait"? With RAEB-2 without medication, what is the doctor "watching and waiting" for? At that stage I don't think there is any time to wait for anything from everything I have read and experienced. Is it the medical system that is letting him down? I was walking six miles playing golf (walking the 6 mile hilly course) and felt fine right up to my stem cell transplant. Feeling fine can mask the underlying severe condition.

I'm sorry he broke his leg and ankle. There may or may not be problems resulting, but a very close eye is important. We wish him a speedy recovery.

[maggiemag]

Well the main concerns would be blood loss during the surgery and infection afterwards. If he made it ok through the surgery then you are over one hurdle. But I'm wondering if it's wise for someone with low platelets playing such a physical sport in the first place! I also agree with Bailie about w and w with RAEBII. The next step would be AML, which is a very bad leukemia. In some people the time to progress is not a very long time. Just a word of caution.

I just badly broke my shoulder, and the surgeon wouldn't touch me with low Hb and ANC, and my platelet count is normal.
Mags
















ii

[Bossywife]

WELL... I'm glad you asked. My husband is one of those guys who always "feels great" when he sees the doctor. Mr Cheer and Joy. Don't want anyone to see that you nap every day and your appetite is waning.

He lives for Hockey, so he told the specialist he wanted to play and was told he could play as long as his platelets are above 40. So he gets monthly blood work now.

Interestingly enough, he has a 100% bone marrow match with his brother. I thought that meant he would do a transplant, but the specialist and my husband decided that "if he's feeling fine, why bother", plus there is a 20% chance he could die from the transplant.

My thinking is that I feel like he is driving around on bald tires and they are just waiting for him to have a major blowout before they will do anything. And then at that point, he'll be so sick, how will he survive a transplant?

I don't like that AT ALL, but my husband is very stubborn and thinks he can just go along like this forever. Even though I see him getting thinner, and more frail every day.

What causes MDS to transform to AML? I've googled everything I can, he has had chronically low platelets (44-94) since he had a crisis in 2008, but wasn't diagnosed with MDS until 2015 with Biopsy because I insisted. I notice a few signs lately, he looks "drawn" and fragile to me, he eats waaaay smaller portions, but spleen doesn't seem to be swollen, but I read that it doesn't always swell (outward).

I'm trying very hard to be supportive, but I have to respect his wishes and he doesn't want to go to transplant because he feels "fine".

That being said, the Specialist called him a few weeks ago out of the blue and said he wants to see us in Vancouver in February. So maybe he's going to suggest we proceed with transplant. Who knows?

[bailie]

Bossywife, I can understand both sides of your conversations with your husband. I have always been a "feel good guy" and sometimes in denial which is not unusual. I always thought the way I was feeling was mostly due to getting older. I was healthy my entire life and very active. My reality check was a routine CBC which showed that my platelets dropped to 48 (even though I was feeling fine). I was on a fast track through MDS to AML(which can happen in weeks). Luckily my doctors were very proactive and I started treatments within a week. I had no knowledge about MDS. I did have a good friend who was diagnosed with AML two months prior to me. He had put off getting medical help until it was too late. Since my diagnosis I have become a strong believer in being on the offensive with MDS and AML. It is so important to begin treatments and "stay ahead of the game". MDS and AML don't get better on their own. They are relentless disorders. Entering into treatment at optimum health is extremely important. If waiting too long some treatments such as Vidaza (a primary treatment for RAEB-2) can be very difficult. If started while in otherwise ok health the treatments are successful about 50% of the time. The next step would be the transplant which also should be done in the best health possible. Your husband is fortunate to be in otherwise healthy condition (besides the leg problems).

From your observations, your husband needs to adjust his thinking (I completely understand that it might be difficult), look at the big picture, face reality and challenge this disease just like he is attacking a goal. It is that important.

You asked, "What causes MDS to transform to AML?" The only real difference can be the blast count going above 20 percent. This can easily happen in weeks or a few months. Once that happens it becomes a much steeper climb. It is important to go into transplant with as low of blast count as possible and that is how the Vidaza treatment helps. I would definitely not wait until February to get the next check. For me, I had blood tests every two weeks following diagnosis and bone marrow biopsies every three months (or sooner).

The "specialist" is not doing your husband any favor by suggesting, "the specialist and my husband decided that "if he's feeling fine, why bother", plus there is a 20% chance he could die from the transplant". Doesn't sound like the kind of specialist I would be drawn to.

[Bossywife]

Well, this is my conundrum... I used to joke with people that if I ever wanted to murder him, all I had to do was tell him that the doctor called and he only has 3 months to live. I guarantee he would die within 3 months... even if he wasn't sick. He is very suggestible, and I know that sounds silly, but I have seen it in action and I refuse to tell him most of the stuff I know about his disease. I truly believe that if he knew he how serious it was, he would go downhill a lot faster.

Trust me when I say that I spend a lot of time chewing my fingernails, wringing my hands and sobbing in the shower. Making him aware of my concerns is as far as I can go when it comes to the Transplant issue. If I were to beg him to do it, and he did it, and then he died, I would never forgive myself.

I do the best I can to take care of him and encourage him to be healthy, and that includes playing hockey (I hate hockey FYI) ... he lives for hockey and if that keeps him alive and happy, I will support it to the bitter end.

The thing is, my husband works at the Cancer Agency in our city. All of his doctor friends are very supportive but very dismissive of the disease (in my opinion). Like he has a minor ailment. So as long as they treat it that way, he will always see it that way as well. Who am I to argue?

He seems to break out in allergic rashes more than ever. Do you think that's related?

*** FYI he has only ever had 2 bone marrow biopsies ... 24 hours apart ... when he was diagnosed at the end of March 2015. He had to have 2 because the first was a dry tap. So was the second. No one has ever suggested he have another biopsy.

[bailie]

I can empathize with your situation. I just find it perplexing that the medical people he has contact with are so casual about RAEB-2. I'm not sure how they could even make the diagnosis without a BMB? My doctors wouldn't have let me out of the room if they had a "dry tap". They would have gone to the other hip and tried again. I will have my 18th BMB in a couple of weeks. A couple of times they have had to go back in to get a better bone core. They also told me that I would be lucky to live more than 7-8 months without intervention.

What is your husbands peripheral blast count from his blood tests? You said, "No one has ever suggested he have another biopsy" after the two failed biopsies. I would suggest that the people he is seeing don't have a clue about MDS (especially RAEB-2) and AML.

[Bossywife]

I don't know what a periphreal blast count is through normal blood work. He has the regulars:
WBC, RBC, Hgb, Hct, MCV, MCH, MCHC, RDW, Platelets, Neutro, ImmGrans, Lymph, Mono, Eos, Baso.

Then he has this thing that says Large Platelets (present) and Giant Platelets (present). Is that what you mean?

[bailie]

The blast count is very important and is a key determination in the diagnosis of RAEB-2 (refractory anemia excess blasts). The "2" refers to blast percentage between 10-20 percent. Anything over 20 percent is usually referred as AML. The peripheral blasts are immature white cells that are circulating in the blood and that is not normal. Most patients with AML have too many immature white cells in their blood, and not enough red blood cells or platelets. The blasts are generally determined in the bone marrow from a BMB. I would think, given what you have said about no BMBs that they should be testing for the peripheral blasts every time he has a blood test.

The only thing I can think is that perhaps the diagnosis isn't RAEB-2. If it were RAEB-2 they (the doctors) should be acting much more aggressively.

[Cheryl C]

Giant/large platelets is just a comment from the pathologist. I have them sometimes and I don't think its much of a concern unless they are there in large quantities, when they might cause bleeding. I have never see a blast count on my routine 4-weekly path results either - only on bone marrow biopsy results - and I don't know whether it's withheld or just not tested for.

[bailie]

I agree Cheryl, the peripheral blast count is another test (an additional vial) in addition to the CBC. The test would be very important in the absence of BMBs.

[Bossywife]

I double checked all the paperwork, he was classified as RAEB-II. Now i'm really worried.

[Bossywife]

The more I think about it, he totally tells them he feels great and I think the doctor goes with that.

While we were in there, I noticed that the spot on his hand where he had his IV 2 weeks ago is black. like BLACK BLACK, not even yellowing around the edges like it does when it heals. He had blood work this morning, so i'm curious to see what it will show.

We also bumped into an old friend who was seriously shocked at how thin and gaunt he looked. We didn't talk much on the way home and then husband says "he hasn't seen me since i was 195 lbs, of course I look different, I was over weight then". He was never overweight.

I wish I had the disease instead of him, because I feel like it would be less stressful. I would be more proactive and I would feel more in .. control? Is that a bad thing?

[bailie]

All I can say is that there is something very unusual about this whole situation. Your husband should have begun treatments immediately upon that diagnosis. RAEB-II is one quick step from AML. RAEB-II is not much different than AML. Then again, I don't know how the doctor could make that diagnosis without a successful BMB or peripheral blast blood test?

"he totally tells them he feels great and I think the doctor goes with that". He needs to get a different doctor immediately.

[Debbie W]

diagnosis without a BMB and you should seek another opinion in another center.

Before my husband was diagnosed I thought he did not look good and suggested he make an appointment with the doctor, he pushed it off until I finally had had enough and said "You look like sh.."

A day later, after a doc visit, they called to say his hemoglobin level was in the low 6's, he was mowing the lawn, they told him to go to emergency unit at a local hospital, he would probably need a transfusion. It was a Friday, they admitted him and did a BMB after the weekend on Monday.

Not wanting to add to your stress over the weekend, but sometimes they need a lot more than a gentle nudge!

[maggiemag]

Hi. Sorry your husband is in such denial! The MDS Foundation has compiled a list of medical centers that are considered specialists in the disease. We don't have any where I live, but I was able to travel just 2 hours to Ohio State. Now I know Canada is a huge country, but there are 3 centers in Canada, unfortunately all in Toronto. Maybe you are near there? At the very least you could contact one and see what doctor they could recommend who might be close? Here is the link:

http://www.mds-foundation.org/mds-ce...of-excellence/

[Bossywife]

Just got his latest bloodwork back and his platelets shot up to 107. His highest has been 70. And his WBC was up to 5.4, he is usually in the low 4.0s.

The platelet thing is weird though, no? How could a broken leg cause his platelets to improve? So weird.

I have a huge list of questions for the doctor this time. Thank you all so much for your input, I appreciate it more than you will ever know.

[bailie]

That is not unusual even though it seems like it would be. Any time I had problems my counts would rally. The marrow that is working responds to the affliction in a positive way doing its best to be helpful. It is remarkable to see the body trying to do what it does best. But don't tell him to "go break another leg".

[Cheryl C]

WBC and platelets can improve when you are fighting an infection so as long as that's not the case, that's a great result for your husband!