Ohio State

[KellyM]

Got the call today that my appointment at Ohio State/The James Cancer Center has been set up for February 9th. I'm so nervous but also eager to see what the CLL specialist has to say. It makes me nervous that my Hematologist/Oncologist feels that I need to be seen there. He told me it was due to me being younger than the typical CLL patient. But if I'm on watch and wait, why would I need to see the CLL specialist? Maybe just as a second opinion type thing? This is all just a lot to take in right now. I try to be strong but there are so many unknowns...it drives me crazy!

[AussieNeil Partner Administrator]

Good question Kelly!

Because you are only 38, you may be a suitable candidate for a bone marrow transplant. These are rarely done for CLL nowadays, but IF that's considered your best option - and it can mean a cure, it is better to do one while you are young, as the risk of the procedure increases with age. By going to a such a world class CLL specialist centre, you'll be able to have prognostic tests done that will confirm whether watch and wait or a transplant is the best option for you.

I hope you can use the Christmas/New Year festivities to help you put that February date out of your mind at least some of the time...

Neil

[KellyM in reply to AussieNeil]

Thank you, Neil. Bone Marrow transplant scares me to death as I have read about everything that can go wrong but if it could mean a cure, it would be something I would have to consider. I'm trying my best to focus on the holidays and put the other stuff out of mind for now. Happy Holidays to you and yours

[AussieNeil Partner Administrator in reply to KellyM]

With the newer FDA approved non-chemo treatments readily available to you in the USA, along with even better drugs likely to be approved in the near future (e.g. ABT-199/Venetoclax probably early next year), along with a wide choice of clinical trials, it is most unlikely you'll be a candidate for a Bone Marrow transplant. Understandably it's best to be sure though - so well done on your doctor's part for referring you!

Neil

[arthurschneider]

I entered a clinical trial for CLL treatment at OSU after failing chemotherapy and I can truly say it was the best decision I could have made. The doctors there are fantastic and the treatment options are numerous. I would encourage you to put your complete trust in them.

[E-Lynn]

There are some great clinical trials at OSU and Dr Byrd and his time are tops. So consider yourself lucky to be seen there. At least one person around your age is doing Gazyva + ABT-199 trial. That combination will be opening I believe at OSU for the untreated. Many hope that ABT-199 is getting close to being a cure.

[MsLockYourPosts Passed Volunteer]

Kelly - My take is a little different from Neil's. I think you are extraordinarily fortunate to have a doctor who recognizes what a complicated diagnosis CLL can be and that patients are best evaluated by someone who spends the majority of his/her time dealing with it. Since your home doctor made the referral, you already know that he and Dr. Byrd will be able to communicate about your case without egos getting in the way. I would guess that you will continue with your own doctor for routine things and be seen by Dr. Byrd periodically, at least unless /until treatment is needed.

I know Neil and I are on the same page about the importance of seeing a specialist. Establishing yourself with one now means should you ever be faced with a treatment decision you will already have someone on your team who knows you and your case.

When you are feeling crazy about the unknowns throw some questions out here.

Pat

[AussieNeil Partner Administrator in reply to MsLockYourPosts]

Pat, I completely agree with you; Kelly has the best of both worlds; access to a world class CLL specialist centre while remaining under the care of her regular doctor for the everyday things, but with access as needed for CLL matters to OSU.

Kelly, as you read more of other members' stories, you'll begin to appreciate how incredibly well off you are with the referral arrangement instigated by your doctor.

Neil

[Debinoz]

Hi Kelly - always good to be seen by a CLL expert. I was only 38 when diagnosed too and have been navigating my way around the world trying to avoid transplant. May still have to have one but am currently on a clinical trial in London after relapsing from FCR (I had that at 39 and I'm now 42). Ohio State is great and they have some fantastic clinical trials there too.

Best wishes

Deb

[teb0513]

I'm from there, and it's a great place. If your on wait and watch, I bet your oncologist wants you to have that 2nd opinion - which is awesome of your oncologist!

Be strong, keep the faith!

Teb

[nvp815]

Hi Kelly,

I was diagnosed in November 2013 by my hematologist/oncologist and saw a CLL specialist in December 2013. I continue to see my regular hematologist every 2 to 3 months and see my specialist once a year (just so happens that appointment was yesterday). Don't look at seeing the specialist as a negative. As everyone has already said it is terrific this opportunity is available to you. As the old saying goes, "Two heads are better than one." With so many new treatment options and clinical trials available, a specialist at a major research center is the best place to go. In my case, my specialist and my hematologist continue to recommend watch and wait, but should treatment become available I have already developed a relationship with a specialist at an excellent university.

I know there is not too much anyone can say to alleviate your fears and anxiety about the unknown. With your diagnosis so new, I would be surprised if you weren't having episodes of panic. I still have those moments 2 years after diagnosis, but they are much shorter in duration now. I am holding onto hope for a cure and many experts in the field are now talking about that as a real possibility.

Try your best to enjoy your holidays with your family and friends. Sending you good thoughts!

Nan

[KellyM in reply to nvp815]

Thank you, Nan. I really do think I'm still in a state of shock. I'm hoping once I see the specialist my fears/anxiety will let up some. I feel very fortunate to live fairly close (3 hours away) to a facility with the great reputation that Ohio State/The James Cancer Center has.

Thank you for the good thoughts! Happy Holidays to you and yours!

Kelly

[meemsdream]

Hi Kelly, After much research this week, I have also decided to go to OSC. It is about 4 hours away from me. I have been on WW for a year and will now make an appointment to go in early spring. Just wanted you to know that I have heard so many good things about the drs. and the facility. If I have to make a choice to go somewhere I am so thankful that I can go someplace that is really top notch. Have a beautiful Holiday and a happy and healthy New Year.

Maria

[KellyM in reply to meemsdream]

Thank you, Maria. The responses I have gotten regarding OSU are very encouraging. Good luck with your appointment!

Happy Holidays and wishes of good health to you!

Kelly

[RK66]

I know you're only 38 Kelly and scared of the future and even more so because you're a young mother. I promise you most any one in here, would trade you for your diagnostic numbers and markers.

I have such confidence that your future will be good and the big advantage you have of being young is time. There are many exciting advances being made. I wouldn't put it out of the realm of possibilities that you will be one of us they will find a cure for.

Chin up. Have a great holiday season and enjoy your life and your family. Try to put February out of your mind. It will come soon enough.

Best,

RK66

[KellyM in reply to RK66]

RK66,

Thank you for that kind and encouraging response. I am so grateful to have found this site. It provides some comfort in this time of anxiety and uncertainty.

Best wishes to you for a healthy, happy Holiday season and New Year.

Kelly

[ThreeWs]

Hi Kelly,

You could be a lot more nervous and less well served if your Heme/Onc did not recognize that he was out of his depth and had not put your interest above his ego in urging you to go to one of the premiere CLL facilities in the world. When you go there you will have made it easier to get back in should your CLL require immediate attention.

I live in a remote area of New York State so I made a point to have a consultation with Dr. John Byrd at the James while in Wait & Watch in 2008. In 2009 my then Heme/Onc in Rochester NY decided she was unqualified to treat me so I headed back to the James. It is a much longer story but the bottom line is that my local Heme/Onc, at one point, prescribed a therapy that would have likely killed me due to a rare condition that Dr. Byrd had knowledge of. His guidance to avoid the therapy recommended by the NY Heme/Onc and the James running an early Clinical Trial with PCI-32765 aka Ibrutinib is what has reclaimed my life.

Unknowns are still too plentiful but the options for you are far better than I had and at any other time. In drawing the unlucky card of CLL give gratitude to your Heme/Onc and the path he set you on.

WWW - Diagnosed 2006 - failed FR with acute kidney damage - Failed HD RTX mono-therapy with more kidney damage - been on Ibrutinib mono therapy starting 54th month with high of quality life @ 72yrs young.

[Justasheet1 in reply to ThreeWs]

Wayne,

72 years young are you and one huge inspiration.

Jeff

[SouthFloridaLady]

It's the best thing that you could do!

[bobbatt]

James Center is top notch. I didn't see Dr. Byrd, the wait list was longer than my hematology doctor wanted but I did see Dr. Farrukh Awan. Great understanding guy. I had my first appointment. He did a general coverage of what CLL is. Then they drew blood. They will ask you if you would like to donate blood samples to goes toward research, which I gladly did. Then they scheduled me for a return visit about 6 weeks later. He then told me exactly what type of CLL I have and what to expect. He explained everything in plain language that I have a full understanding of what CLL is. He explained everything in almost child like fashion so I could understand. I haven't been back up there in 2 years but it looks like I might be headed back shortly. My WBC recently jumped 20,000. I had been going back every three months but now I am going back every 6 weeks to my hematologist. She has been talking about going back up to the James Center for possible treatment if my numbers keep jumping. I'll find out March 7th. I am just so tired of the constant fatigue, mental and physical.

You'll find the James Center to be great!!!

[KellyM in reply to bobbatt]

Thanks, bobbatt! I do hope you get some relief from the fatigue. I don't have the physical fatigue but I completely understand about the mental side of it. I'm excited to see Dr. Byrd and I'm hoping he has the same opinion of my Hematologist that my type of CLL will be a very indolent course. Best wishes to you!

[bobbatt]

From what they told me at the James they don't go by the WBC much. They used to treat when the numbers went high. They now go by quality of life and symptoms. The main thing I have to be careful about infections. I'm sure you'll d fine. The worst part of my trip to the James was the parking and the walk to the office. LOL

[bobbatt in reply to bobbatt]

Oops I forgot that they have moved into the new building. I haven't been to that building yet.