"More Patients Spill the Beans on their Test Before Treat™ Experiences":
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Bruce’s 2nd opinion with a CLL expert enabled him to enjoy 15 years of Watch & Wait as opposed to the first recommended chemotherapy. Heather’s story reveals the twists and turns of trying to coordinate your care when your local hem/onc and your expert are not in close communication about what testing should be done. Michelle gives us 3 important lessons on how to manage CLL. Gary’s lack of testing will have him forever questioning his first doctor’s treatment recommendation and its relationship to his TP53 mutation. Read their stories. Download the Test Before Treat™ one-pager.
Pick up a Test Before Treat Bracelet at one of our 12 Patient Educational Forums. And send in your stories! support@cllsociety.org. Smart Patients Get Smart Care™.
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Test Before Treat™ CLL Experts, Doctors Mato, Stilgenbauer, Furman, Jain, and Davids endorse Test Before Treat™. Find out what you need to know before every treatment.
Getting a second opinion with a CLL specialist was very beneficial in my husband's case. It led him to an opportunity to participate in the I/V Fixed Cohort clinical trial. It was also very informative, providing us important information we did not know previously.
Although not dramatic, my husband's original Hema/Onco doctor was a bit off the mark. It created unnecessary, although unintentional, distress.
- del 17p status can be determined by a FISH test before treatment, which is readily available. Every Australian CLL patient should be able to find out their del 17 p status before they start treatment.
- TP53 mutation can be done in selected centres, so I would strongly recommend that be asked for. You might need to travel to find a specialist that will find a more appropriate treatment for you if you are TP53 mutated.
- IgHV mutation status sadly does not influence the choice of treatment in Australia, despite good evidence that the majority of those who are unmutated IgHV do not have long remissions on the standard chemo options of BR and FCR given to those who are not 17p del/TP53 mutated. I'd still encourage Australians to ask for their IgHV to be tested to build a case for the new non-chemo drugs to be used in place of the older, less effective chemoimmunotherapy drugs.
My husband is TP 53 and del 17p in the USA. Here the requirement is 2 failed chemo prior to treatment with Ibrutinib.
He had BR and did well for 3 years. Then was given a couple of rounds of FCR before being stopped. Now he’s been on Ibrutinib for 27 months successfully with a few side effects.
I believe your statement "Here (USA) the requirement is 2 failed chemo prior to treatment with Ibrutinib." may have been true 10 or more years ago, but is not a current practice.
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There is clinical trial data and opinions from most of our CLL experts that avoid chemo for nearly all patients and choose between Ibrutinib, Venetoclax, and Gazyva for the first treatment.
This was what we were told in December of 2015. It may have been due to our insurance companies. ?!?!
Although the Ibrutinib was just coming out of trials and being approved for use ....my husband had to be beyond 2 sets of failed chemo to be considered for Ibrutinib.
They do not watch and wait or skip the chemo and go straight to Ibrutinib as other countries.
My point is that things have changed significantly in the last 5 years, and I would doubt that any USA doctor or insurance company would have those rules today.
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Patients with a 17p deletion or P53 problems can rarely get benefits from Chemo (FCR or BR ) but the treatment can do permanent marrow damage, so the obsolete rule you are quoting may violate the "Do No Harm" principle.
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The links in the original posting make this clear. And few, if any non USA health systems require Chemo for 17p patients today.
In honesty your experience alarmed me somewhat and thankfully FCR is no longer given to people with a TP53/17p deletion (even in the U.K. where chemo remains the first line treatment). Second rounds of chemo generally are now avoided wherever possible. However, no-one is doubting your word that this is what you were offered but simply very surprised to hear it!
The idea of any patient receiving chemo with a TP53/17p deletion is clinically inappropriate enough according to all expert testimony I’ve ever read but a second chemo treatment following relapse would be inexcusable.
Thankfully research and availability has moved on and it seems clear that many CLL specialists especially in the USA no longer use FCR even as a first treatment.
The important thing is that your husband is making good progress.
Thank you so much Newdswn. I’ve often thought how blessed some people were in other countries to be able to “watch and wait” ...and then be put straight onto Ibrutinib without FCR.
We are very grateful to God to still be here. In ‘13...he wasn’t expected to live beyond 2&1/2 years and we knew nothing of Ibrutinib yet.
Five years ago was a lifetime in CLL treatment years. So yes I’m sure that’s what you were offered then. But fortunately things have changed and are going to change rapidly in the next few years too.
Here are the USA milestones with respect to FDA approvals for CLL/SLL. You'll note that Ibrutinib was approved for treatment of CLL, irrespective of previous treatments, barely 4 months after your husband's first treatment. Talk about bad timing...
Specifically March 4, 2016 – The U.S. Food and Drug Administration (FDA) approved the use of ibrutinib (Imbruvica) for front-line use in the treatment of chronic lymphocytic leukemia (CLL), representing the first chemotherapy-free treatment option of its kind available to patients regardless of treatment history.
I'm in the USA and seeing a doctor who is not going to prescribe chemotherapy. I don't want to spend the money to get all these tests if I'm going to be prescribed ibrutinib, acalabrutinb or a combination of venetoclax+obinutuzumab. Do you think it matters in this case?
If they are not going to prescribe chemotherapy, ask them why they are doing these tests? If the answer is "So we know how patients with your CLL genetics are likely to respond to your eventual treatment", how would you respond?
I would prefer to contribute to a clinical trial. If that doesn't happen, contributing to multi-center "real-world" published data would be the next best thing.
So I'd say, "great, let's do the tests—so long as you help me fight my insurance company to get the costs covered!" Ah, the joys of US private health insurance.
They hypothetical tests in question are an updated FISH (it's been five years), karyotyping and the NGS CLL panel (TP53, etc.).
You're raising a great question. I would like to hear what Dr. Koffman and Dr. Furman would say to that.
They don't like to answer hypothetical questions from intermediary people like me, but I believe that you (the patient) can pose it through the CLLSociety.org Ask the Doctor. Or email BKoffman@cllsociety.org.
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