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Just diagnosed with CIL . I live in Canada. I have more tests and a visit with the cancer center in Calgary. I did check MD Anderson on how CIL is treated and found them excellent in giving me the latest on how this cancer is treated. They make clear that chemo isn't part of their approach. They use BTK inhibitors and in some circumstance veneoclox [ not sure on spelling] . Anyways if when I meet with my specialists and he/she says I need treatment and it is chemo I intend to get a second opinion from Mayo o MD Anderson. I will have to pay for such with my credit card. I figure the Calgary center is pretty current on treatments but one can't be too careful. I am 78 . Any input, advise, information or suggestions will be well received . I spend my winters in Texas so MD Anderson is in a better location for me. Mayo and Md Anderson bare both top level centres.
Replies to "Just diagnosed with CIL . I live in Canada. I have more tests and a visit..."
Just to clarify, your subject title for the post says "CLL" whereas the text body says "CIL" twice, so I'm not sure which you meant.
MD Anderson recently summarized the results of a trial conducted from 2017-2021 in this article:
https://www.nature.com/articles/s41591-023-02785-8
CLL was one of the disease cohorts they treated, and they got some pretty promising results.
The study used stem cells from donated umbilical cord blood to produce a large batch of "NK" (Natural Killer) cells that were modified and infused in the patient to target the cancer cells. NK cells offer a few advantages over T cells in certain situations.
If CLL is actually your condition and you have access to MD Anderson, definitely ask them about this specific treatment.
Best wishes to you!
lancaster1963:
A few suggestions:
1. Don’t be in a hurry to get treatment. Seek a second opinion as CLL is generally a very slow growing and non-aggressive cancer. Some people never need treatment, and some don’t need treatment for many years. You may outlive it. The standard of care is the watch and wait approach where your doctor will monitor patients signs and symptoms with frequent labwork, imaging, genetic and immune testing. If your doctor and you both feel it’s time to treat then look at treatment options other than chemo.
2. Chemo is more affordable to government run health care programs like Canada’s than the more costly but more effective targeted and immunotherapies offered today, but chemo often comes with a higher toxicity profile and can be less effective.
3. If you seek treatment outside Canada you may not get reimbursed for treatment in the U.S.
4. I have SLL (same as CLL but predominantly in the lymph system vs. blood) for many years and declined to the point that my oncologist recommended treatment. I started oral Venetoclax (Venclexta), a BCL2 inhibitor, plus infusions of Obinutuzumab (Gazyva), a CD20 inhibitor, immunotherapy and targeted therapy two months ago and my bloodwork and all my symptoms dramatically improved within the first two weeks. This therapy has the highest rate of deep remission and lower levels of residual disease for CLL/SLL according to my oncologist. Other doctors may argue that point.
5. If you seek treatment in the U.S., you are facing a huge cash outlay. Venclexta will run $12,000 USD the first month and $12,000 to $18,000 USD for the following 11 months for a total of $150,000 to $200,000 USD. Gazyva runs $40,000 USD per infusion x 8 infusions = $320,000 total. On top of that, frequents follow-up labs and doctor visits are required which adds more cost. I’m well insured, so I’m OK, but I couldn’t pay all this out-of-pocket.
6. All said, you’re looking a a full year of treatment and follow-ups, so your winter in Texas may be a year instead. Ask your doctor why they won’t offer you targeted and immunotherapy?
Good luck.
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I have a different cancer (stage 4b oligometastatic prostate cancer), but I have found that the Cancer Centre in my big Ontario city is right up to date with the latest treatments I've been reading about at places like Mayo, so I'm optimistic that your Cancer Centre in Calgary will be as well.
FWIW, chemo hasn't been part of my treatment for the past 2½ years — I've had radiation and am on androgen-deprivation therapy (standard) and androgen-reception signal inhibitors (very new). So far, the treatments have kept me in full (medically-assisted) remission for 31 months, and might do so for many years to come. I hope your experience is positive as well. Cancer treatments have improved so much just in the past 5 years!