3rd opinion

[rlyndecker]

Since I had 2 completely opposite opinions from Stanford and UCSD. I decided to take the overall advice which is NOT to rush into treatment. I am quite worried about going back to work in the fall so I am trying to get things taken care of before then. So many suggested to get a 3rd opinion before deciding anything. I am off to UC Davis for a 3rd opinion on Thursday (I was shocked at how quick they were able to get me in!). It turns out this VERY young Dr. is a CLL Dr. I guess, at least that's what the person on the phone said...

I don't know what to tell this guy and what to not tell him in re: to the other 2 Drs. he already knows I saw UCSD because I had to be referred but what do I say about Stanford....How much details do I give about the other 2 Drs.? What should I bring medically from the last 2 years? I really just have blood work.

Thank you!

[Hidden]

I think the blood work is the important thing, then how you are feeling. Sure he will examine you, and base his advice on all 3 aspects. Do write down your questions so you don't forget anything and don't be afraid to ask them and jot down notes. Also if you can take someone with you as we do not remember everything from these face to face consultations.

Best wishes

Bubnjay

[Hidden in reply to Hidden]

Hope this consultation clarifies thinks for you, after your conflicting previous consults.

Bubnjay

[Cllcanada Top Poster CURE Hero]

Disclose EVERYTHING to the third doctor, including all your medical records, so they have a complete picture... from a historical standpoint...

~chris

[rlyndecker in reply to Cllcanada]

Chris- when you say all my medical records I'm not sure what you mean. They ask on the "medical background" about surgeries and vaccinations and diseases so I listed all of that.

But how far back do I go about being sick? Does he need to know that growing up I used to be fine all day, come home and night have a fever? But now as an adult, I never get a fever? Once I started teaching I started getting sick ALL the time (hmmm coincidence?) this is why I have had the surgeries I have had. I guess I just don't to go into too much details because both of the other drs. have said those things have nothing to do with the CLL. But to me maybe not directly, but I have no immune system to begin with right? (No tonsils, no spleen, no gallbladder....= weakened immune system?) then the CLL attacks the immune system so that makes the immune system worse yes? I just am so tired of NOTHING being related to the CLL according to the Drs

Thank you!

[Cammie]

Hopefully a full record of your medical history would be on file somewhere?

I would have thought that any referral from the hospital would include this otherwise how could this new doctor give you an opinion which includes all the facts.

Be honest with this new guy inform him of the background as to why you are seeking a third opinion tell him your fears and discuss the clinical side fully also.

Do make a list of questions because we all get carried away at the moment of consultation and forget things and if you can take someone with you please do.

Remember you are doing this to ensure you get the best holistic treatment not just the clinical but what's best for you!

Ask about the prognosis etc.

Wishing you best of luck and hope you find peace of mind after the consultation.

Geoff

[lankisterguy Volunteer]

I think I know your Stanford CLL expert, the one I saw from 2011 to 2012 had a very narrow view of what was CLL related. He refused to discuss or continue testing my blood for HHV-6, D3 and iron even though treatment for those by another doctor was helping reduce my symptoms. I stopped seeing him and turned down a Ibrutinib trial he offered.

[rlyndecker]

My full medical record I guess is on file at Sutter Gould which is where I see my "regular" Nurse practitioner; the one whose treated me for the last 15 years. But that's it. Hopefully, that's enough. Other than that my history I guess is MIA. I asked before how to get records from my previous city/dr. and called them but my Dr. had retired and I guess they aren't required to keep them forever. I at least wanted my Spleen Surgery info. so I tried the surgeon, the hospital - nothing.

They are trying to get the info. from UCSD who referred me but if he can't- I at least have all the blood work etc.

Thanks, I think I will do that ASAP write the questions down. I am super nervous because either way my main thing is I don't know how to deal with school again getting sick all the time. Last year was awful. I can't believe minus the fatigue the difference- no constantly being sick with something (last year I even ended up with Pink eye!). I love my students but it was so hard working when I felt sick AND felt like I was going to fall asleep.

Thank you again. I will post what the Dr. says tomorrow sometime after I get home!