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ADT+docetaxel first impressions, adding darolutamide

Oldie68 profile image
18 Replies

I had my first Lupron shot about 6 weeks ago. Started on chemo/docetaxel last week. My PSA went from 250 when diagnosed in early January to 1.8 before the chemo. I have a high volume bone metastasis. Can I still skip Lupron since the PSA is already within normal range? Are there other ways of administering Lupron? I think people were mentioning a pill, instead of in injection. First dose of docetaxel wasn't too bad. Immediately after infusion I felt fine and could even have driven myself home but took a taxi. Had some headache and tiredness a couple of days later, but that was it. Following the ARASENS clinical study (discussed elsewhere on this site) I requested to start taking darolutamide. I have to see my blood work tomorrow because my red blood cell are a little low even without chemo. Any thoughts?

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Oldie68
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18 Replies
Tall_Allen profile image
Tall_Allen

No, you can't skip Lupron. That's the only reason why your PSA is low. I hope you can also start Zytiga (PEACE1) or Nubeqa (ARASENS). It depends if your insurance agrees.

Oldie68 profile image
Oldie68 in reply toTall_Allen

Thank you for your reply. I am starting Nubeqa in a couple of days.

Stevana profile image
Stevana

Hello Oldie,I have done Docetaxel (last infusion 12/3/20) and have benefited greatly from it. My PSA has been undetectable for over a year. I too have multiple mets and and was stage 4 upon initial diagnosis (Gleason 9) in March 2020. My PSA was never above 7.8 and dropped precipitously after starting ADT (first Firmagon and later Orgovyx). After chemo my PSA went undetectable and has remain there for over a year.

Some observations from my experience- I did not suffer badly from chemotherapy. I iced my hands and feet. Had slight neuropathy in hands that went away and greater degree of neuropathy in the soles of my feet. It has subsided but has not left me. I can still feel some numbness when I walk but it has not effected my mobility. I also had lose of taste even thou I chewed on ice chips during treatment. I’d say it’s back to about 85% normal, but many foods don’t taste the same. I’ll just add that the Docetaxel infusions have a cumulative effect as far as making you progressively more fatigued and effecting your appetite. I did six infusions and doubt I could have withstood another. However, once it’s over you recover pretty quickly.

As for ADT - my MO says it’s my “friend” for life. Meaning I won’t ever be off this treatment. My major complaint is loss of libido, fatigue and hot flashes, but I’m coping well for a 70 year old guy. I endorse moving to the oral version of ADT. I’ve been on Orgovyx for approximately a year and have experienced no unusual side effects other than those mentioned above which are also fairly common with Lupron and Firmagon.

I’m faring well, asymmetric and still castrate sensitive, which is allowing me to continue with ADT as my single treatment for now. My MO says once I become castrate resistant he may re-challenge with Docetaxel or cabazitaxel chemotherapy along with another second tier drug. For now I’m riding the ADT tiger alone for as long as it works. But as I said, per my MO, it’s a tiger I’ll never be able to give up. Hope this helps. Stay strong. 💪👍🌈

Cynthgob profile image
Cynthgob in reply toStevana

Is orgovyx expensive ? Lupron is completely paid for due to it being injected. But if the pills are safer I would investigate!

Oldie68 profile image
Oldie68 in reply toCynthgob

It looks like it is. Around $2500 for 30 pills.

Stevana profile image
Stevana in reply toCynthgob

I pay $10 per month co-pay for my Orgovyx script. I’m with BCBS FEP (Federal Employee Plan) as a retired federal employee. I don’t carry Medicare Part D. Every insurance company has its own rules. You need to coordinate between Orgovyx.com, your doctor and your insurance company to determine coverage.

As far as Orgovyx being safer, all I can say is that it has a lower cardio-vascular-decease profile than Lupron and Firmagon. My experience has been that side effects are similar to Firmagon, which was my previous ADT drug before starting on Orgovyx in April 2021. I find the daily oral pill regimen more convenient (and less painful) than the other ADT injection drugs.

Joeym1040 profile image
Joeym1040

Been on Lupron or equivalent for 11 years. My biggest problem were hot flashes which I got every 45 minutes. They eventually calmed down. I hardly notice anything at this point but we are all different. Benefit far outweighs any side effects.

Oldie68 profile image
Oldie68 in reply toJoeym1040

Wow! That's a record I am hearing for the first time. Good for you! I thought a couple of years down the road (2-3?) after the first Lupron in about 50% of the patients bones start breaking due to osteoporosis and life changes forever until the end. Just a couple of year later, according to the ARASENS clinical trial (without darolutamide) You are an inspiration!

Teacherdude72 profile image
Teacherdude72

I have been on Lupron for years with one 18 month break. Back on 2 yrs ago and Nubeqa since My 2021. Only issues with lopron is hot flushes at night but less as time goes on.Nubeqa has my psa undetectable. T level next to zero so energy zero. Gym daily helps.

Oldie68 profile image
Oldie68 in reply toTeacherdude72

Thank you for your reply. How are you responding to Nubeqa?

Teacherdude72 profile image
Teacherdude72 in reply toOldie68

Nubeqa has dramatically dropped my psa. The month before Nubeqa it was 1.78 then after two months with Nubeqa it was 0.16 and in each of the 8 months since that undetectable. Only side effect is low energy.

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

No problems for me...... discounting my ex-wife....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/12/2022 3:36 PM EST

Oldie68 profile image
Oldie68 in reply toj-o-h-n

You are in an enviable situation j-o-h-n! Stay the way you are

👍

j-o-h-n profile image
j-o-h-n in reply toOldie68

Actually you are.... you're younger than me Mr. Oldie.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 03/12/2022 7:36 PM EST

btca profile image
btca

Your position in treatment and metastases is quite different from mine. I have been on Lupron and Casodex 15 months, psa .01 , an insignificant detection on one lymph node. My side affects are what I consider quite acceptable, some hot flashes, less body hair, (didn't need hair there anyway), and since I an quite a relaxed easy going person, my energy level hasn't changed. Lupron shot every 3 months- no big deal. My main side affects are from the RP in July 1, 2019, and I can live with penalty for clearing 'most' of the cancer. A waiting game now.

Oldie68 profile image
Oldie68 in reply tobtca

Thank you for sharing your experience. What's "RP"?

btca profile image
btca in reply toOldie68

radical prostatectomy (RP).

Oldie68 profile image
Oldie68 in reply tobtca

I see. Thank you. I still have to learn the acronyms.

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