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Thread: Know your Tumor results - ATM positive

  1. #1
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    Know your Tumor results - ATM positive

    Quick background: Late Feb 2018 my Mom had a distal pancreatectomy and splenectomy. The results of her surgery were T2N0M0. She never did chemo before surgery as we found the PC because the tumor was causing a varies into her stomach and she was losing blood - the surgery was the only way to stop the bleeding.

    She did 6 months of chemo (May thru Oct) with Gemzar and Xeloda - she didnít tolerate the Xeloda very well so she only took it for a little bit during each cycle and stopped. Her CA 19-9 dropped into the normal range after 3 cycles and stayed there till she was retested at the start of March 2019 when it was 613 (CA 19-9 was 6 when it was tested in Jan 2019). So back to the oncologist for a CT scan that didnít show anything. She started chemo again in Mid April. We also started the Know Your Tumor process in late March using the tumor they removed in February 2018.

    The oncologist suggested Folfirinox so off to the hospital we went for her to get a port-a-cath. Actually it was going to be mFolfirinox after I chatted with the oncologist and understood what dosing she was suggesting. No one can figure out why but Mom flat lined on the table and after CPR and epinephrine she was back. She has a history of aFib and has had 2 ablations and was also on heart meds. The best guess is that the meds became a bit much and made her bradycardia to the point of her heart stopping. After testing they have decided she needs a pacemaker that will be done early next week.

    So since she never got the port-a-cath, and is not in any rush to try again just yet with the heart stuff going on, she started back on Gemzar and added Abraxane. Sheís done 2 cycles and her CA 19-9 came down from 2,200 to 900 after the first cycle - she hasnít done her blood work yet before the start of the third cycle but our guess is it will have dropped again.

    We just got the Know Your Tumor results and and the tumor they removed tested positive for the ATM mutation. The suggestion is platinum based chemo and PARP inhibitors for maintenance.

    I was wondering what peopleís thoughts are on moving to say Gemzar and Oxaliplatin? Mom is 85 years old and did okay on Gemzar. Her biggest issues were low hemoglobin and needing some units of blood. It also made her retain fluids which even Lasix didnít do a bunch to resolve which was not fun at times.

    The Abraxane has been a bit tougher on her and has been causing her pain in her legs and maybe even a bit more of fluid retention so this go at chemo has been a bit tougher. Sheís also just about lost all her hair which she can almost poke fun at now....she was not too humored when the oncologist first told her she likely would lose her hair.

    Any thoughts and input would be appreciated.

    Thanks!

  2. #2
    Super Moderator Top User ddessert's Avatar
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    Gem/Ox may be the "easiest" of the platinum combinations, but is still tough on the kidneys. She will want to have two functioning kidneys going into that, which is likely if she's been doing Gem/Abraxane.

    My plan for my 82-year old father (BRCA2 is similar to ATM) was to demonstrate Gem/Ox effectiveness and then transition to a PARPi monotherapy treatment with Dr. Kim Reiss-Binder at UPenn's Basser Center for BRCA. She has a few clinical trials going on there that have shown PARPi effectiveness in those situation.

    I understood that this was really only a delaying action for my father (stage 4), but thought it could buy him another year of good life. His other health issues got in the way and he only got to try two Gem/Ox treatments before calling it quits.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

  3. #3
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    David, I’m very sorry for the loss of your Dad. It’s so very difficult trying to navigate medical treatment especially as an older patient with other medical issues.

    Did your Dad get the same dosage of Ox that he would have if he tried Folfirinox? I’m just wondering what dosage would be considered the “correct” dosage of Ox for her to get along with the Gemzar?

    She does have some diminished renal function but it’s actually gotten a bit better now that she’s off a lot of the heart meds she was on. They watch her kidney function closely and make sure to keep her kidney specialist in the loop. If the Ox it’s too much harder on the kidneys then Abraxabe then she likely will be able to tolerate it.

    From what I’ve been reading the PARP inhibitors for maintenance sound a bit rough - when you look at the possible side effects. Do you have a sense for how well people actually tolerate them?

    All in all it sounds like her switching to Gemzar/Ox would be the way to go now that we know about the ATM mutation. Now we’ll have to see what her oncologist is thinking.

  4. #4
    Super Moderator Top User ddessert's Avatar
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    I had to visit a major cancer center (Moffitt in Tampa) to get the Gem/Ox Treatment and even then I had to provide them with the evidence. You at least have the tumor report to back you up so hopefully advocating for a platinum treatment will not be so onerous.

    The PARPi tolerance is really patient-by-patient. But I think in general it is more well tolerated. But that is not a rule for everyone.

    There are a few options. I had Gem/Cis which is considered to be one of the rougher ones although I had not trouble whatsoever (at age 48 ). Then there is Gem/Ox or some combination with Carboplatin.

    We would have liked to go straight to the PARPi treatment, but that was not possible where he was treated (local, small town oncologists). You might have more luck than us, especially with a genetic test result to back you up. PARPi are already FDA approved for different cancer(s), so getting them for your mother may be easier.

    There is a “standard” Gem/Ox treatment dose (calculated by body volume) and my father got the full dose. I did not think he necessarily needed the full dose because our family cancers has been really sensitive to platinums, but he wanted to hit it hard. His down-time on days 2-7 after chemo was significant.

    I have to say that the ATM data for platinum/PARPi is not as robust as for BRCA2, but there seems to be a lot of faith (by researchers) in the effectiveness. If their reasons for BRCA2-platinum effectiveness are valid, then ATM mutation carriers should also benefit.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - Radiation+Xeloda, 25 days in 5 weeks
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2018 - NED
    Mar 2013-present - NCT01088789
    @pancanology

 

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