Frequency of BMBs and blood tests

[CatherineJ]

Hi all,

I have been living in London for the past year and I was diagnosed here as well. I am moving back to the US and I was just wondering what everyone else's experience has been with US hematologists. My hematologist in London said that I should get a BMB every year to make sure that I do not have any changes in my marrow even if my blood counts don't change. I've also been having monthly blood count checks here and my hematologist seems to think I should continue this on a monthly basis as well.

On a positive note, my platelets reached 122 on the last blood count check this week!!! My platelets have doubled since last fall when they were at 60 and its the highest they have been in over a year. It's very encouraging that my counts have risen without any treatment over the past year.

My neutrophils bounce around like crazy, I don't know if anyone else has had the same experience. One week my neutrophils can be at 0.90 and then two weeks later they are back to 2.

Grateful for any advice as always. So glad to have this forum.

Catherine

[DanL]

Catherine,

I have been in watch and wait for over 2 years now, counts have been pretty stable. When I was first diagnosed, we did blood checks weekly for the first couple of months, then monthly thereafter. I am currently on the at least every 3 months routine, which ends up being about every 6 weeks as I don't want too much to happen without knowing.

As for the BMB, I am currently doing 2 times per year, with the possibility of more if peripheral counts change dramatically.

I hope that helps.

[gramous]

hi catherine,
We don't have any experience in US because we are living ineuropa but here in belgium, my boyfriend must have one blood test every month for the stabilty of counts and one bone marrow aspiration about every year... hope that can help you, take care,béné

[milliken2]

Catherine;
I don't know where in the states you are headed for, but yes - a good hematologist should be established even before you get here - have the records sent, so they can be evaluated so that the Dr. has a heads up prior to your visit.
Regarding BMB's - it all depends on where you are in the disease, and again on your Dr to see how he wants to monitor it. Blood tests the same way. My husband goes for blood draws twice a week because even with the Dacogen - he is transfusion dependent. He has had almost 170 units of blood in a years period of time. He also has 2 other auto immune diseases, so they do keep a close eye on him.
Good Luck to you - where ever you land !!!

Beth

[CatherineJ]

Hi everyone,

Thanks for the replies. I haven't found a hematologist yet, I live in upstate NY. I need to figure out getting health insurance again in the next week or two and then I imagine I will have to get a referral from my GP to see a hematologist. I don't know who my GP will refer me to yet, but my hematologist in London said he will send over all my medical records thus far to my new hematologist in the US.

So far my MDS has been rather stable over the past six months. Last fall every count was steadily going down and I was having weekly blood tests to keep track of it, but since January everything has gone up and stayed stable. In the fall my platelets were in the 60s, hemoglobin 10, neutrophils 1-2, wbc 3-4.7. Now platelets are staying around 100, hemoglobin 13, neutrophils bobbing back and forth from 1-2. This is without any treatment, so I have wondered if it is normal for people to be worse when they first get MDS and then get a little bit better. I haven't really changed my lifestyle or anything since my counts have started to get better.

My last BMB showed no chromosomal abnormalities and no increase in blasts and that was in January. I'm just assuming that my new hematologist will be hesitant to accept a previous diagnosis without seeing BMB slides for themselves. I've read previously that hematologists won't let you get sedation at first, so I am nervous about having to fight my new hematologist regarding this. I've had a BMB without sedation and it was excruciating and just plain cruel to put me through. The second BMB was with propofol and that was perfect as I cannot remember any of the pain from it. I plan on putting up a big fight if the new hematologist refuses to give me sedation for next BMB.

Thank you again for your kind replies and advice. I appreciate it. It's so hard having a rare disease and not knowing anyone that can help.

Catherine

[Cheryl C]

Hi Catherine

I know how you feel, as I was in your situation 12 months ago. Had never heard of MDS. You feel like you've entered a labyrinth with no way out at first. I hope you don't mind me giving you some advice from my own experience.

Knowledge is power. Learn as much as you can about MDS RCMD. (http://www.aamds.org/about/MDS/types could be one helpful website for you). Don't make any decisions unless you understand the implications. Ask your specialist lots of questions and research, research, research.

If you continue stable don't rush to treatment unless your specialist thinks it absolutely necessary. I have read so many stories of people suffering from the effects of the treatment itself.

Live as healthfully as you can - eat a healthy diet, drink lots of water, be careful with hygiene (esp hand-washing), exercise daily even if you don't feel like it (walking is good), and you might be surprised how well you continue to feel! If you believe in God, rest in His arms each day and experience the peace which results.

The BMBs are a necessary evil - 6-monthly seems to be a fairly normal frequency. I have monthly blood tests. My specialist gives me a copy so I always know where I'm at.

I wish you all the very best and will look forward to hearing how you're getting on.