First post and learning as much as po... - Advanced Prostate...

Advanced Prostate Cancer

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First post and learning as much as possible

positive-thinking profile image
17 Replies

Hi

My husband is 59 and I have added as much info to my Bio as possible about him and this journey. We just found out yesterday that he is BRCA2 positive from blood germline testing. This is the first time I have posted but I have been reading everything several times a day for a few months now. He is currently just finished his # 3 round of 6 rounds of chemo ( docetaxel )and so far his PSA is going down and side effects have been doable. This recent news about BRCA2 is upsetting and we were told they would be having a genetic specialist calling soon and all family will be tested . My question is if this makes him have even less years ahead? More issues along the road? Any info from others would be so great . We live in a very remote area of Canada and have no oncologist near us ( we fly to see one ) the one we had only talked to us on the phone a few times and is leaving the practice. We have a Doctor here that has training and has an oncolologist she turns to for info. When we see here for Chemo # 4 , should we be asking for screening for breast cancer and pancreatic cancer ( I read BRCA2 have higher odds of these cancers ? ) now? Any other thoughts what we should be asking her about with this news we now have ? Thanks and I wish each one of you the very best.

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positive-thinking
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17 Replies
mrscruffy profile image
mrscruffy

I too am BRCA2 positive. I was diagnosed 7 years and 8 months ago. ADT has recently failed and I am now on Lynparza because I am BRCA2. It gives you some different treatments to choose from. Good luck to you

positive-thinking profile image
positive-thinking in reply to mrscruffy

Thanks for the reply, how is the Lynparza going so far? How are the side effects for you?

mrscruffy profile image
mrscruffy in reply to positive-thinking

Little nausea at first then great after that. Little out of breath at times but manageable. PSA down to .03 but MO says it is effecting white and red blood cells so on a 2 week break then we will monitor blood in 2 week intervals until we get the correct dosage

Tall_Allen profile image
Tall_Allen

That's a great response to chemo and triplet therapy! Since there are only a few distant metastases, debulking the prostate with radiation may be beneficial:

prostatecancer.news/2018/09...

When he becomes castration-resistant, a PARP inhibitor combined with a second-line hormonal may be a good idea, but there may be new therapies by that time.

BRCA+ removes the first-line control of cancerous mutations, so it demands vigilance.

positive-thinking profile image
positive-thinking in reply to Tall_Allen

Thanks so very much for your reply , it means a great deal to me. My husband has more than 5 mets ( rib, shoulder and several in pelvic) This radiation would still be of benefit with that many mets. We are just starting out in our treatment and dont have much of any input from the Oncologist , is this something to discuss with the doctor that is a bit trained in oncology we are seeing ? ( she gets advice from an oncologist ) His care has been mainly my research , I had to fight to get him on Nubeqa and also to get chemo . Appreciate your input

Tall_Allen profile image
Tall_Allen in reply to positive-thinking

The benefit of prostate radiation falls off sharply when there are more than 3 bone metastases.

Yes, you have to discuss this with oncologists, perhaps via phone? I'm very impressed you you guided his treatment with triplet therapy.

Yadifan profile image
Yadifan

Hi Miss Positive

Can't help you with you BRCA questions but wanted to welcome you and hope you get the answers and the help you need. Sending you warm hugs from Arizona. What a tough situation you're in being so remote. We live 2 1/2 hours from our MO and have done a few telehealth appointments, but having to fly to see your oncologist...oh my, I can't imagine. There's enough stress without having to navigate travel arrangements.

Wishing you all the best. Stay hopeful and positive!

positive-thinking profile image
positive-thinking in reply to Yadifan

Wow ! Thanks so much for the nice welcome here. We live in Yukon Canada and are less than 2 hour drive to Alaska and really love it here but one never thinks that life will cause health concerns that make remote living a bit more challenging . But in my positive mind , we will be fishing in Alaska in June and he will be kicking cancers ass ! I researched Arizona as I love to ride a Yamaha 200 TW trail motorcycle and the riding there looks excellent. I won't make it now but I can still dream . Best of luck with you

Mgtd profile image
Mgtd in reply to positive-thinking

There is a large Canadian and northern tier of the USA influx into mid and southern Arizona in the winter months. I live in the northern area of Arizona and we have the four seasons. I still see Canadian license plates in our area during the winter which surprises me. Of course they maybe visiting the Grand Canyon or Sedona. Thought they would be further south enjoying the lack of snow.

I am looking forward to Springtime. Personally I have had my fill of winter by this time of the year. . I can’t wait for the snow to melt and the daffodils and tulips to show. I always get this feeling in February. March brings Spring garden clean up.

Over the years I have planted over 500 bulbs over our septic leach fields. They seem to love that area. We get an amazing but short display of color.

Andy our Berger Picard enjoying the flowers.
positive-thinking profile image
positive-thinking in reply to Mgtd

Love your pup ! So cute , looks like it has terrier in it? That's a great deal of bulbs!

Mgtd profile image
Mgtd in reply to positive-thinking

No Terrier. She a pure breed Berger Picard. They were almost extinct after WW I and II. Although you can not tell from the picture she is about as big as my two female Dobes. Excellent watch dog and as sweet as can be.

She loves the snow and cold weather. I do have to brush her for 3 minutes everyday or he hair mats.

j-o-h-n profile image
j-o-h-n

Greetings........... he can beat the bastards........Keep posting here.

Good Luck, Good Health and Good Humor.

j-o-h-n

positive-thinking profile image
positive-thinking in reply to j-o-h-n

Thank you , I read your posts and smile each time at your humour . Like exercise and fresh air , humour is very good for you . You rock :)

j-o-h-n profile image
j-o-h-n

Thank you, And from a real Canuck.........I'm Impressed..... Keep smiling.... You too will be around for at least 30 years or more.........

Good Luck, Good Health and Good Humor.

j-o-h-n

Sagewiz profile image
Sagewiz

Yes, you should slert the whole family about increased risk of prostate and breast cancers with BRCA2 an start getting screened at earlier ages than normally recommended. I am on a similar prostate journey but have had no chemo. Resources I recommend are the book "Invasion of the Prostate Snatchers" PCRI.org and the subscription service the Moss Report which analyzes both natural and medical treatments and makes recommendations. I have incorporated treatments recommended by several of those sources. I am taking several supplements including Modified Citrus Pectin an 5 defender mushroom powder and changed my diet to be much more cancer-resistant and immune system boosting.

positive-thinking profile image
positive-thinking in reply to Sagewiz

Thank you so much for the reply and recommendations ! Never hurts to learn as much as we can . We are supposed to have someone calling us that is going to be specialist with the genetic testing the family will all need now . Best of luck to you

Sagewiz profile image
Sagewiz in reply to positive-thinking

Good luck to you as well. I am anxiously awaiting my next set of quarterly labs next week.

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