← Return to CLL - newly diagnosed

Discussion

CLL - newly diagnosed

Blood Cancers & Disorders | Last Active: 1 hour ago | Replies (108)

Comment receiving replies
@fortunateoldguy

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.

Jump to this post


Replies to "lancaster1963: A few suggestions: 1. Don’t be in a hurry to get treatment. Seek a second..."

My experience at a big Ontario Cancer Centre is that they've never suggested chemo for my stage 4b prostate cancer, even though my meds cost above CA $6,000/month.

As far as I know, provincial health plans can't penalise doctors for recommending more-expensive treatments *or* reward them for saving money — they all bill the same — so I'm not sure what their motivation would be to push a patient towards a cheaper treatment if a better one is available.