Trying to help an acquaintance who lives close to the Black Sea,in Georgia, who has just been told that her CLL has turned into B-PLL.

[jettyguy1]

Someone has reached out to me and is looking for a way to have her B-PLL treated. She lives in the Baltics and where she is located they apparently do not have the best medical resources. I have given her the names of certain doctors here in the USA. I mentioned to her that I thought that venetoclax and Ibrutinib "might" be preferred treatments. Any suggestions that might be helpful,as to what opportunities might be available to her? Thank you. She was initially being treated for CLL and it appears that her CLL has transformed to PLL,according to her description.

[lankisterguy Volunteer]

Hi Jettyguy1,

I have reached out to some of my sources that know about other NHLs beyond CLL. I will relay whatever I learn.

As you know this group is specifically focused on CLL, and unfortunately B-PLL is a different disease more like MCL (Mantle Cell Lymphoma), symptoms and treatments, so we don't have any expertise internally to help you.

You may have Googled and found these expert papers from Cancer.net, NIH and Blood Journal:

cancer.net/cancer-types/leu...

ncbi.nlm.nih.gov/pubmed/248...

bloodjournal.org/content/12...

I hope I can find some referrals to European expert doctors.

Len

[jettyguy1 in reply to lankisterguy]

Thanks very much Len. That's very nice of you. Boy,geography is everything.

[Cllcanada Top Poster CURE Hero]

Is it B-PLL or CLL with a RICHTERS transformation?

They differ somewhat

~chris

[jettyguy1 in reply to Cllcanada]

I have only gone back and forth by email. But she was diagnosed with CLL and she states that the disease has turned into B-PLL. So who knows? I don't even want to guesstimate,frankly I advised her to seek out a professional opinion. I do know that she is scheduled to be treated with some kind of chemo. I have read that both IBRUT and V are being used to treat PLL. So she's aware of that . Thanks Chris. Also I just a emailed her to see if her doctor described or mentioned Richters??? Candidly,I don't think she has that much Knowledge about her CLL variants,etc. I just asked her to explain how long she has been in W&W and also if she's ever had any medical treatments for CLL. I'll see what she says.

[jettyguy1]

What probably would be the most helpful, would be if anyone knows of some humanitarian medical "visiting" program,where they might treat patients who have limited medical resources in their own country and are allowed to be treated in another country. Who even knows if that exists?

[mgh348 in reply to jettyguy1]

Hi, Check out CLL Society Expert Access program. An internet consult with a CLL expert is possible.

Maxine

[Cllcanada Top Poster CURE Hero in reply to mgh348]

I believe US insurance is required

[lankisterguy Volunteer in reply to mgh348]

I asked Dr. Brian Koffman about whether that CLL Society program could treat non US citizens, and he said that unfortunately their liability/medical malpractice insurance would only cover them for US citizens.

Len

[mgh348 in reply to lankisterguy]

That's too bad. Thanks for letting us know.

[jettyguy1 in reply to mgh348]

thanks for this..I'll pass it along.

[jettyguy1]

She's been W&W for two years apparently and now they are about to treat her with Chemo for B-PLL. So I encouraged her to serif there is any way that some of the novel drugs could be shipped to her location or to her doctors. And I encouraged her to possibly move to another country,if that's remotely doable. What else can you say to someone in her situation? She honesty does not appreciate the aggressiveness of PLL and frankly,my expertise is very limited,but i made a point of telling her that it's a much more aggressive blood disease. And from what i am reading its pretty rare and hard to diagnose.

[MsLockYourPosts Passed Volunteer]

If she is able to come to the US. NIH (National Health Institute) treats all trial patients for free. Travel, meals and lodging would be her responsibility unless she is a US Citizen. Check Clinicaltrials.gov for trials.

You might try contacting bkoffman (I think that's his user name here) through a PM. He has a better sense of the international scene.

Do you know which Baltic State or whether she has any options regarding treatment outside of her area being covered?

Best of luck to your friend!

Pat

[MsLockYourPosts Passed Volunteer]

A little out of touch, having been evacuated for the Thomas Fire - home now. The ASH Conference starts today, so both Dr. Furman and Brian Koffman might be in a good position to get information that would help your friend. You could PM and specifics, like exact location, to Len for Dr. Furman or to Brian through a PM to him here.

[jettyguy1 in reply to MsLockYourPosts]

Thanks. She has Dr. Koffman's email presently and she has been told about posting on the site that Dr.Furman usually answers questions on. Thanks for the other info. I'll pass that along too. She's located in the Baltic state of Georgia.

[Rt2000 in reply to jettyguy1]

Probably doesn’t matter for this discussion, but isn’t Georgia on the Black Sea, not the Baltic? Much further south.

[jettyguy1 in reply to Rt2000]

Hey good catch! I'll have to change that. I never should have cut that geography class 47 years ago....LOL Somebody must have recently moved the BALTICS. LOL

[jijic]

If she's interested in a referral to someone in Germany (much closer, and much less expensive without local insurance than the US), let me know and I'll try to help.

[jettyguy1 in reply to jijic]

Jijic. That's very kind of you . Thanks. Apparently she is a single mother of two and the only breadwinner in her family. So her financial situation as well as family obligations ,make travel difficult. That said,you may be on to something and I'll pass this along to her. Hopefully if she has some interest, you'd be able to Facebook chat or something, with her directly. Are you located near or in Germany? Thanks again.

[jijic in reply to jettyguy1]

Hi jettyguy1,

Yes - I'm based in Germany. I'm only recently diagnosed, so I don't have a great sense of cost differences, except that I know that, uninsured, a FISH test costs upwards of $10,000 in the US, and 1,500 (euros) here, so certain treatments may also cost less.

[MsLockYourPosts Passed Volunteer]

There are also several trials in Germany that those from other countries might qualify for, though dealing with a trial could be challenging with two kids and needing to stay on the job as much as possible.