Going to OSU for Second Opinion

[momof12]

Hello

Thanks so much for everyone on this site! I was just diagnosed with CLL on Dec 18th and I started chemo (BR) on Dec. 21st. I was completely healthy then the next thing you know my glands are so swollen that I lost 20 pounds in 10 days and almost lost my airway. I just turned 46 last month. How can one be 100% healthy, thin, active, never smoked, done drugs, or drank and then have things go into the "toilet" so quick? It was crazy.

Anyways, things moved really quick for me. I didnt have time to consider clinical trials and what-not (although I asked and the doctor said there wasnt time). He didnt want to wait for CAT scans or the FISH test. I understood and agreed with his concerns. I have had my periods of "freak out" after the diagnosis then after finding out last week that I'm 11q and 13q deleted as well as CD38+.

This site helps me calm down. Im trying not to be afraid. I have 12 kids ranging in age from 25 to 10 months. I need to be here a long time for them.

After my first round of BR my ALC went from 91000 to almost 1000. Everything else looked great too. The second round also went super well. The doctors at Cleveland Clinic says Im doing great but Im still going to OSU to see what the team there says on Feb 10th.

Any advise on what I should be asking now that my health is not in "crisis" and only my emotions are weak? I want to make sure I use this appointment wisely.

[Cllcanada Top Poster CURE Hero]

Hi

What you describe is very very unusual for CLL...

I would suggest a PET/CTscan and a node biopsy, I'm surprised they haven't done this yet...

I think a second opinion is a good idea, and OSU is an excellent choice...

~chris

[momof12 in reply to Cllcanada]

I had a CAT scan that showed swollen nodes in my neck and pelvic region. The ones in my neck were the worst. I couldnt swallow ANYTHING thus the weight loss. When you looked at my throat, it was completely closed back there. The doctor says that my glands were kissing and my airway was greatly at risk. He was right...it was very hard for me to breath if I wasnt sitting up. All my nodes were fairly small (1-3 cm or so) I had one that was 5 cm in my pelvis. No other organ involvement. Spleen normal.

I have had 2 surgeries. The first was a biopsy of my HUGE tonsil. It came back inconclusive because the sample was "crushed". They then did and node biopsy and it determined that I had CLL.

[Cllcanada Top Poster CURE Hero in reply to momof12]

I would request a PET scan... what is your LDH? 11q patients tend to have bulky nodes... but this sounds rather pronounced...

A drop of 90K in ALC is also remarkable after a single round... drops of 20-30K are considered good...

[momof12 in reply to Cllcanada]

When the blood results came back in before my second round of chemo, the nurses were very excited. They said my blood work was awesome. They even called the doctor who is on vacation. I don't know enough to realize and things are good or bad

[momof12]

LDH ~ Is that LDH Lactate Dehydro on my results?

It says 205 before my first chemo. Dont know what it is now.

My throat was super closed up. It swelled up so fast. I had been having problems swallowing thus my trip to a doctor. Ive had swollen nodes for a while but they never bothered me so I didnt think anything of them. My throat closed in a matter of a month when they were trying to diagnosis me.

Right now, my throat is normal and the DR said everything that he could feel was completely gone. Of course we dont know whats going on in the inside

[Cllcanada Top Poster CURE Hero in reply to momof12]

LDH is good... I guess you are just very reactive ⚛

[momof12]

So reactive is good?

What about my appointment, what should I ask?

[Cllcanada Top Poster CURE Hero in reply to momof12]

You should have a well thought out timeline of what you have been through with important numbers like your ALC etc... and bring all labwork and documentattion you have...

I would want to know what their first impressions are of your case, and if they have encounted similar cases in the past...

They may want to do some advanced testing, I don't know...

[momof12]

Thanks. I have everything printed out. I hope they see this as good. I'm anxious to know their opinion. I want to take sure Cleveland Clinic is on top of their game

[Cllcanada Top Poster CURE Hero in reply to momof12]

CC used to have a couple of Chronic Lymphocytic Leukemia (CLL) specialist, not sure of the current crop...

[momof12]

He came highly recommended. He's a hemetologist/oncology guy who specialists in blood and marrow disorders ...us I guess.

[Cammie]

Sounds like you are doing well to me!

Best of luck in your consultation and for future treatment and don't panic it appears you have been looked after very well.

Geoff

[Bubnojay]

Hi momof12

I agree with Geoff you seem to have been given prompt treatment that has worked to get those symptoms under control. I would be expect that based on your results you will be well cared for, as they are as you shared, awesome.

My only comment will be to either ask if you can record your conversation with your specialist, or take someone with you to help remember what was said. In these situations we cannot remember all that was said. Not many of us are blessed with total recall sadly. A little list of the questions you really wants answers to will help you feel more in control.

Best wishes

Bubnjay1

[Pepper122]

You are in good hands at osu.

[canadagoose]

OSU has a great way of communicating on line. Take advantage of it. They send you everything through a portal. Just spent 2.5 weeks there. Tahiti would have been more fun but things are looking up.