When to treat?

Why do some people start treatment before symptoms?

Are these a particular category of patient?

I wonder % of CLL patients get treatment, and, what % do so before symptoms?

[Hidden]

My TTFT was 35 days

[Hidden in reply to Hidden]

symptoms?

[Hidden in reply to Hidden]

Waking up at 3 am literally soaked in sweat, bed sheets soaked,

lost 60 lbs., sitting at my desk at work falling asleep

at 2 pm without even knowing it, shaking so badly from chills

that my employees had to carry my coffee or tea to the

office for me in the morning. Extreme shortness of breath.

My guys wanted to take me to the ER on multiple occasions

because they knew I was seriously ill, but I was too stubborn

to admit it because I had never been sick a day in my life.

(Cliché, but true in my case)

DX 7/21/16 CLL ultra high risk

Malignant pleural effusion

6 liters of fluid drained from my right lung

2 hospitalizations

Still here and feeling great!!

[Hidden in reply to Hidden]

Wow. Major symptoms, I'd say.

Had you not been diagnosed before the symptoms or after? Oops, you said 35 days. Sorry, thought it was different reply!

Fluid in the lungs...I should know but I'll look it up to see ... from pneumonia or sinus infection...or....

I assume you've had BMB?

May I ask what treatments (medicines) you've had?

I'm glad you're here! Thanks!

[Hidden in reply to Hidden]

I've had 2 BMB

First found 95% infiltration of CLL

Second found 50% after 5 months of Venetoclax

I can not tolerate the full 400 mgs of venetoclax

so I have been on 200 mgs since 3/17

FCR in August and September of 2016 had

no chance of working as we 17p/tp53 deleted

patients well know, but it got me to the

wonder drug ABT-199.

Lymphoma specialist suggested supplementing

with rituximab infusions

Had 6, once monthly infusions ending 9/28/17

Holding well

Nick

Miami Beach

12/04/17

[Hidden in reply to Hidden]

I appreciate this information so much, Nick.

I look stuff up I don't know 'what is.'

but i'm not sure (yet) what 17p/tp53 quite means.

I hope and pray you keep feeling better!

--I'm across the alley in Naples. : )

[lfm73]

I started treatment 2 weeks after a bout of pneumonia. That's when I was diagnosed. I did not have prior symptoms except losing weight easily.

[Hidden in reply to lfm73]

Was the pneumonia severe?

(I've it before, twice. i've seen had the vaccines. not that those are any guarantee!)

The weight part...I'm not sure about yet. It's been 2 years.

[lfm73 in reply to Hidden]

It was pretty severe. I was in the hospital for 5 days. Had to have iv antibiotics twice a day and then took strong oral for 2 weeks.

[Hidden in reply to lfm73]

thanks for sharing. I'm learning so much.

The first time I had pneumonia my mother had to drag me through the door everyday for a week to go get a pencillin shot. :/

[Seok]

Hi tedro

I started treatment with Ibrutinib about 2 years after diagnosis when my hemoglobin went from 14 to 9.6.

No enlarged nodes or any other B symptoms.

Seok

[virdieblue in reply to Seok]

A hemoglobin drop triggered my treatment too, though I also had other symptoms

[Newdawn Administrator]

Hi Tedro, not many doctors would recommend starting treatment for a CLL’er without symptoms because clinical evidence suggests that early intervention doesn’t increase overall survival rates. There are clear guidelines outlining when treatment is warranted but it’s still an imprecise science and some say more of an art. That’s the reason it’s important to have a CLL ‘specialist’ because doctors less experienced in dealing with this blood cancer can be spooked too early into recommending treatment. This old but still very relevant article from Dr. Sharman’s blogs explains this very well;

cll-nhl.com/2012/12/when-to...

Regards,

Newdawn

[Hidden in reply to Newdawn]

THANK YOU!

[Hidden in reply to Newdawn]

The link is super informative, NewDawn. I reading and learning as fast as I can.

I almost know, I do pretty much, what 17p and all means...

Is a FISH panel... is that dependent on taking a BMB?

And/Or is it done routinely with W&W blood draws?

...got ask so I can learn as fast as I can. ie, tried to call Dr to ask...no answer... too late... trying to read about it. But I just need to ask hoping for quicker. ....lest I lose 'where I was' in my reading!

On a personal note, A) my general condition -- 64 in May, living off previous fortunate health -- however, last 25 years has been... bad. plus mental health (MH?), no meds. So, while I don't want to go to the doctor(s), btdt, ... over the last number of years...I just feel...done, cooked, I suppose. Oh well. B) I sorta dropped out, told my Hema Dr that I wasn't coming back last July. I've had blood checked by PCP, gong back to same 'cancer center' hema doc, late Dec.

[Newdawn Administrator in reply to Hidden]

Hi Tedro,

It’s good to learn but don’t fry your brain trying to take it all in at once. It’s complex stuff!

In answer to your question, the FISH test can be done via a blood test or BMB.

This explanatory booklet is absolutely superb and will tell you everything you need to know to help you understand the diagnosis, process, treatment and all the terms needed to understand CLL. I find it very comprehensive and it will help you in your quest for knowledge.

nccn.org/patients/guideline...

Best wishes,

Newdawn

[Hidden in reply to Newdawn]

I'm a fair researcher. : ) just fair, though.

I'm figuring out my doc using this info, too. ie:

If I've been being monitored for 2 yrs already...is it more likely than not that a FISH was done?

I do have web access to results. How would it indicate FISH? just say FISH somewhere?

--that's too intricate noone, not even Peter Noone, has to answer that. lol

[virdieblue in reply to Hidden]

This won't go away because you ignore it...

[Newdawn Administrator]

If you’d had cytogenetic testing like FISH, I’d be surprised if you hadn’t been told and the results shared with you Tedro especially as you seem to be from the States where it’s seemingly done following diagnosis.

Here in the U.K., I haven't been offered the FISH test 5.5 years in and it’s not routinely done until just before treatment.

Ask your specialist about this or see if you can find it on your online results.

This excellent link will satisfy all your curiosity about the different tests and how they are done;

cancer.org/content/dam/CRC/...

Newdawn

[Hidden in reply to Newdawn]

Thank you so much. By tomorrow or after, I should caught up.

I've already learned so much more than I knew.

I can't thank you and whoever runs this server enough.