Searching for evidence. Any BRCA or A... - Advanced Prostate...

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

sammamish
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.

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I cannot help, even though I have BRCA-2 and PTEN, as I still have control of the disease, after 38 months. For how long I do not know. So I keep with my program--> drug/supplement program.

But I am aware of men here who have used Olaparib, against BRCA-2, as well as 1, I do not know the success/side effects-they have not reported in a Post. Others went after ATM, and I do nor remember what they used.

IMO which is prejudiced for many reasons, I will not discuss here----> I would in order do the PARP inhibitor first. And there is the Trial of a PARP and Checkpoint Inhibitor that is getting a lot of excitement--forgot its name---X360--forgot what X is. Someone who follows me will give you the exact name of the trial. Or find it at Trials.gov. On a Winter Vacation In Florida, so I do not have everything with me.

I have concerns about the Platinum Chemo's--it has to do with options if failure?????

I have swore to never do Chemo. Immunology, or new Alpha Radiation, or the Lu-177, Act. 225 and Car-T techniques or even BAT would come before Chemo, for me.

I am not a Doctor, so I am not giving advise, or a Medical Direction. I am just reporting, thoughts. Hope someone that has gone thru what you are asking responds to you.

Nalakrats

sammamish
sammamish
in reply to Nalakrats

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

Nalakrats
Nalakrats
in reply to sammamish

Retinoic Acid correct spelling--can be obtained by Prescription. From Vitamin A supplements there are 2, from my point of view. One based on Beta Carotene--where an enzyme converts this to Retinol--now it should, with another enzyme then go to Retinoic acid, assuming the enzymatic actions are efficient.

The other is from Cod Liver Oil----> Retinyl Palmitate which should also be converted to Retinoic acid. For the best one to use, I would lean towards the Cod Liver Oil---that only shows Vitamin A, and not A and D, etc. As some of us get D3 from other supplements.

Nalakrats

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

Hi Lombardi, did you ever get gene tested?

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

Was it positive for boca or atm?

Not sure. Was pos for the BRCA mutations.

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
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.

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
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

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.

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

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

Metastatic, castrate resistant associated with homologous recombinent deficiency

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

Thx

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

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.

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.

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