Diagnosis confirmed this weekend

As some of you may know, i was diagnosed with ET (Jak negative) back in April. Symptoms are manageable and things are going fine overall. It struck me, after talking to my doctor and getting some conflicting information (and already meeting my deductible), that maybe a second opinion would be a good idea. Seeing as I live in Texas and MD Anderson - one of the best cancer centers in the world - is just a few hours away, I made an appointment. I was fortunate to see Dr. Srdan Verstovsek, Chief of the Section for Myeloproliferative Neoplasms... The big cheese of MPNs at MD Anderson, if you will.

Well, he after ordering up a ton of tests, including a BMB, we met and he confirmed my diagnosis based on historical information and preliminary blood tests that had already returned - that was great news. He explained that over the next couple of weeks, he will be testing for over 30 different mutations and that the results of those tests will help determine future outcomes. So, I was feeling good about things so far.

I went back that afternoon for the BMB. I'd done this before, so I was mentally prepared. I didn't realize there were a couple of differences this time around. It seems before, I'd only had a bone marrow aspiration (like drawing blood from the marrow). This time around, I was going to have an aspiration AND a biopsy. I'm not sure exactly what the process was, but it sounded like a dentist's drill going in during that part of it. The other difference this time is that I was awake - the time before I had been under sedation. That sort of negated any mental preparedness I had mustered up!

The good news is that it really wasn't too bad. Is it uncomfortable, yes. Is it weird to feel someone poking around in your bone? Definitely. Is it horribly painful? Nah. Five minutes later I was on my feet and headed out the door. Only one hitch... I have a history of vasovagal response when I get poked on. In essence, high anxiety (needles, stiches) can make me pass out. Well, after the procedure I headed to the restroom to wash my face and whatnot. Five minutes later I woke up on the floor with a bloody gash on my forehead and my entire left side bruised and aching. I'd passed out entirely :/ My 15 minute visit to the BMB center turned out to be a four hour visit to the ER...

Anyhow, it's water under the bridge and we're all laughing about it now! I just wanted to share in case anyone is going in for a BMB. It's really not that big a deal - just lay down if you feel lightheaded!

[Jennifer1974]

Omg that sounds scarier than the biopsy! Sorry to hear that!

[Hidden in reply to Jennifer1974]

Thanks, Jennifer! It was more embarrassing than scary!

[mhos61]

Hi Jason, it must be so reassuring for you to have a confirmed diagnosis by such an expert in the MPN field. During my relentless research on ET I have come across Dr Srdan Verstovsek on the 'patient power' website and he does seems very clued up. Will you now stay under his care long term?

I hope the mutation testing turns out favourable for you. Just before reading your post I was reading about the 'order of mutations' on cancer outcome. I don't have too much of a scientific mind but I kind of get the basics.

Thanks for sharing with us and good luck.

Mary

[Hidden in reply to mhos61]

Thanks, Mary. I think I'll probably stay closer to home for ongoing care, but if there is a change or progression of the disease, I'll definitely go back to Dr. Verstovsek. I think that is probably inevitable - my platelets are now over a million - up from 795 two years ago. :/

[Jennifer1974 in reply to Hidden]

Did they think That your symptoms were related to the increase in platelets? Did they brush them off as "not related"?

[susieq75]

Hello Jason

Must be a great relief to have confirmation of ET in that you know what you are dealing with. Just wanted to say I wish you well and hope the mutation tests bring you hopeful news.

Your experience after the BMB must have been awful, good on you for seeing the funny side of it!

Susaieq75

[Eadaoin]

You sound as though you are coming through it all. Well done. I've had many bmbs and prefer not to have sedation. Sedation is designed to wipe your memory of the procdure and the one time I chose to have it I found that it didn't make any difference. Bmbs are painful but manageable - I have always had both marrow and bone. The level of bmb discomfort depends entirely on the skill of the doctor doing it. Some are better than others. I do my best to "zone out" through focusing on my breathing. It sometimes works! You say you were not prepared mentally - the shock was enough to cause you to pass out if you have a vasovagal problem. I have a pacemaker to protect me against collapse from vasovagal syncope - not only in relation to bmbs - because it has become more problematic as I have grown older. I now wear a Medic Alert bracelet both for that and for the bloods.

[Hidden in reply to Eadaoin]

I completely agree about sedation vs. local. Maybe it was the skill of the doctor, but it was much less uncomfortable when I was awake. Maybe they use less local anesthetic if you're asleep? Also - right there with ya on zoning out!

[cannonfire]

I also live in Texas. Did your insurance cover the appointment? I'm JAK positive with ET also. Would love to hear more about your experience. I live in the dfw area. Closer to Fort Worth.

Keep me informed please.

[Hidden in reply to cannonfire]

So, I met my deductible being diagnosed earlier this year and some other surgeries in the family. Until December, everything is covered. I figured I'd take advantage of that and see one of the experts in the field!

[linds]

With reference to the above comment, three cheers for the wonderful NHS and all who sail in her!