My 2nd opinion at Ohio State

[momof12]

So yesterday I went to OSU for my second opinion. Let me tell you, that place is huge! Its funny, there was hand sanitizer EVERYWHERE! I loved it!

Anyways, I met with the doctor and I think everything that was said was positive. I was afraid of my deletions and it was explained that there are medicines that will help me irregardless. They also said everything that Cleveland Clinic is doing is good. At this point I will finish my chemo (BR) and then go back in June for a follow up with OSU.

They said just look forward to the remission and stop worrying about CLL until 2-4 years

While I was there they did a few more tests (mutation test and another FISH) so Im anxious to get those results. Im 11q/13q/CD 38+ so when I relapse, they said I can look at either whatever new meds they have as well as starting to possibly look for a stem cell donor (since Im young). I felt the meeting went really well. Everyone was so optimistic about the progress in CLL.

They asked me to donate my blood for research so of course I said yes. The researcher said that many people refuse. Other than a medical reason...why would they do that? Whats a few extra tubes of blood to help find a new medicine or cure? I'll do what ever it takes to help myself, you guys or the new CLL'ers coming after us!

I'm feeling better today about my situation

[Justasheet1]

Momof12,

Great news. Stay positive. Don't worry about anything just get through the chemo and enjoy. Good things are coming. I feel it.

Jeff

[Bubnojay]

So pleased for you that your visit was a positive one Momof12. You sound much lighter in spirit.

They certainly seem comfortable with sharing and reassuring, it's so helpful when the folk we are relying on are prepared explain, and answer our questions.

Good luck with the tests.

Bubnjay1

[CLLCalifornia-USA]

Such wonderful news. Thanks for the extra tubes of blood. I agree, if it might be of use in finding a cure, take what you need.☺️ Good luck on your recovery. Sally

[Hidden]

Mo,

The best of British luck to you!

P.S. In London hospitals' there are people that go around drinking the sanitser's for their alcohol content! Oh joy!?

[rlyndecker]

So happy for you! When I was at Stanford they asked for extra of my blood too for research. I let them, if it helps go for it! At one point they were going to take some of my sister (twins) for research too because she didn't have CLL but she said they never called so maybe they decided against it...I don't know why anyone would refuse either, it's no big deal once they're in LOL.

[Lyra]

Good luck momof12. Really glad you had a positive experience. 😊

[KellyM]

So glad you had a positive experience! That was the first thing I told my husband when we got to OSU; "this place is huge!" I also donated my blood for research. I felt the same as you, why not just do it...they were taking blood anyway! I hope the rest of your treatment goes smoothly and you have a long durable remission! Best of luck to you

[lexie]

Love the new OSU facility, but the love the specialists more! I donate blood for research there, it is a no brainer for me. It may be that some are overwhelmed by having to see a specialist that they feel the need to contract and reserve what they feel remains of themselves, and that is their right. Best of luck to you, you went to a great place!

[Hershey]

Congratulations 😀! I am sure it was so terribly hard being diagnosed so young. I painfully struggled at age 53; I cannot imagine what you felt. I am glad you found a home at OSU. I did the same at MD Anderson and donated blood and had my lymph node specimens from my surgery at home sent to them as well. It is through research we have hope and the strong chance of a cure soon.

Best wishes to you.