Searching for evidence. Any BRCA or ATM germliners out there who have done Carboplatin or Pelvic radiation?

[sammamish]

Trying to thread the needle on this sticky wicket. Germ liners with DNA repair defects may have their healthy tissue overly damaged by Parps, Carboplatin and Radiation, however paradoxically the tumors may also be more sensitive to these treatments. So wondering if there are any germliners out there that have done these treatments who can report on the side effects they have/have not experienced.

Am considering these treatments so shaking the bushes out here on the front lines.

[sammamish]

Thanks, Nal appreciate your perspective. I had a thought which may interest you.

I know you are very focused on cancer stem cells.....the hidden ones. I read an article about vitamin A, or more specfically retenoic acid. From what I gathered high dose A(have to be carefull over 50000 unit due to liver) it can force cancer stem cells to differentiate or essentially commit themselves(show themselves) I recall my father used to use it as part of a treatment modality for certain cancers and skin disorders back in the wild west days

[Lombardi24]

Am doing olaparib (lynparza) . Just nausea and is manageable. Side effects from lupron are worse.

[sammamish in reply to Lombardi24]

Hi Lombardi, did you ever get gene tested?

[Lombardi24 in reply to sammamish]

Yes for a trial back in 2017. They did a bone biopsy of tumor

[sammamish in reply to Lombardi24]

Was it positive for boca or atm?

[Lombardi24 in reply to sammamish]

Not sure. Was pos for the BRCA mutations.

[pjoshea13]

A masterful use of the mixed metaphor. Threading the needle on a sticky wicket while shaking the bushes on the front lines. Please send photo. LOL

-Patrick

[sammamish in reply to pjoshea13]

Sorry don't think I could draw it, even though I fancy myself a pretty good cartoonist. Would definitely require supernumerary appendages to achieve though.

[dorke]

Hi

BRCA2 here, finished a week ago 25 sessions of IMRT (VMAT) to the prostate and pelvic nodes.

I guess you are looking for long term side effects but as for short term issues for me the

Hardest part was to keep the bladder full.While therapy progressed it became harder and harder but eventually the team and I learned my timing.

Peeing became somehow harder and could not get fully voided so I woke up to pee about 6-8 times a night.Now after a week of finishing the therapy urinary functions are starting to get better.

As for bowel functions I didnt have any issues.

I had implanted spaceOAR gel so maybe it helped sparing my rectum from the radiation (hopefully)

I had a little bit of fatigue but I relate it to waking up early to get prepared and not sleeping too good.

My 2 cents to overcome the treatment and to battle this disease in general:

- have an healthy and BALANCED diet

-exercise and stay active as much as you can

-manage stress

Wish you great health

[sammamish in reply to dorke]

Thank you dorke, I assume your ROs were aware of Brca gene? If so did they adjust your radiation plan in any way due to that?

Samm

[Stegosaurus37]

I've been qualified for the TRITON III study using rucaparib PARP inhibitor, which is FDA approved for ovarian cancer (we get the ladies' cancer hand-me-downs) and will make a decision in the next few days as to whether to do that study or Lu177. I will let the group know what the results are. Nausea has been reported, however pickled sushi ginger is one of my normal dinner condiments (I like the stuff), so I'm not concerned about nausea. Didn't have any with lupron or taxotere.

[Jdbnord in reply to Stegosaurus37]

Stegosaurus37 does the Triton study require you to be castration resistant?

[sammamish]

Steg, does the triton study require you to be castrate resistant?

[Stegosaurus37]

Metastatic, castrate resistant associated with homologous recombinent deficiency

[Spaceman210]

Can you please give a referencefor the issue with radiation sensitivity so I can discuss w provider?

Thx

[Tall_Allen in reply to Spaceman210]

If your RO doesn't know about ATM, get a new RO. it's been taught about for 40 or more years.

[Spaceman210 in reply to Tall_Allen]

Easily found references so yeah.

However Dr. Dorff said I certainly had it, given family history. I then asked her if it was actionable for me and she said no.

This was in context of meeting w RO's so surprised she did not say I needed to bring it up or get official test.

[Tall_Allen in reply to Spaceman210]

I'm not surprised - She's not an RO. Doctors mostly only know about their own specialty. From an MO POV, there are no drugs for it, so she is right that it's not actionable.