After ADT, my MO told me that handling things like Prolia management won't be in her bailiwick. I didn't ask about post-ADT SE's and recovery from same. Hot flashes, low T, BMD loss, and last not least sarcopenia.
What is the community's experience with how post-treatment SE's are best handled? Are we thrown back to our GP's?
Which ADT SEs are most bothersome to you?
BMD loss (I'm getting Prolia through my MO, but that way stops after ADT is stopped)
>> My MO says to use an endocrinologist.
Hot flashes (37.5 mg venlafaxine being prescribed now by MO)
DEXA scan after ADT cessation -- who should order it? (My MO ordered the only one I had to date in late 2022, that showed osteopenia pre-ADT)
Thanks for asking
Why are you stopping ADT. Just a vacation?
Its as per my MO. My initial Dx was high risk oligometastatic, no LN involvement, with two small PSMA PET/CT scan vertebra spots. SOC = RT and 24 months of ADT + abiraterone as per trials. My PSA became and remains undetectable. It is potentially an indefinite stoppage.
"SOC = RT and 24 months of ADT + abiraterone as per trials. " That is incorrect. The STAMPEDE trial only applied to men with pelvic lymph node metastases and no bone metastases. For men with vertebral spots (it doesn't matter how big - what you can see is just the tip of the iceberg), the SOC is permanent ADT. However, taking vacations is your choice.
Its as per my MO. My initial Dx was high risk oligometastatic, no LN involvement, with two small PSMA PET/CT scan vertebra spots. SOC = RT and 24 months of ADT + abiraterone as per trials. My PSA became and remains undetectable. It is potentially an indefinite stoppage.
Hi Derf
I’m the nutritionist that tries to give advice and leave decisions up to each person
Endocrinologist deal mainly with hormones (diabetes,prostate and breast cancer sleep issues Alzheimer’s gi issues etc I’m not sure which ones they each deal with specifically.
I did notice you have insomnia. Me too and a high quality melatonin ( hormone) seems to help
I don’t sell any nutrients but if you pm me I can tell you which melatonin i use
It’s cheap and i get it from Amazon
I have an Endo because of hypothyroidism. When I was diagnosed with PC, the Endo is the one that orders the DEXA scans and monitors the results. My MO seems glad that the Endo is handling this issue.
My impression (based on my experience and reports from others) is that MOs aren't usually eager to help their PCa patients manage the side effects associated with the treatments that they have prescribed. "Talk to your PCP or an endocrinologist about that." Fortunately, I found an endocrinologist who is helping me on two issues: 1) Best drugs (e.g., prednisone, dexamethasone, eplerenone) and dosages to minimize PB increase and edema while taking abiraterone. 2) Xgeva and Prolia strategies to balance bone density loss and ONJ risk after many years of treatment.
Think more exercise first. Then all the rest of it. Doctors vaguely encourage it, but in reality they mostly know little about its immense benefits, very much including every aspect of your scenario.
If doctors were more aware of its power, exercise would be the very first medicine prescribed.
Absolutely right.
Yes, indeed, get a complete work up by an endocrinologist. They should provide valuable information. Ask your endocrinologist about trying Tymlos instead of Prolia to avoid jaw necrosis. And London441 is quite correct about exercise.
You should look into estrogen patch therapy for reducing hot flashes and eliminating osteoporosis. Estrogen patch therapy has been proven to grow bone in Men on ADT.
How does one get a prescription for estrogen when it is not SOC?
That's a great question!
The easiest way is to ask your PCP or MO for a prescription of estrogen patches, 1 large patch (0.1mg Estradiol/24hr), changed every 3-4 days. Explain that you want to relieve hot flashes. They shouldn't object, especially if you explain that you will stay on your current ADT regime.
The current Phase-III PATCH trial in the UK uses 3 or 4 large patches at a time.
Another way is to contact estrogel.com and talk to their MD on staff. He/she will write a prescription over the phone for treating hot flashes. You can start with 2 pumps per day applied to the abdomen or thigh. It's better to not spread it out over the largest area possible, but, rather, to spread it out over a smaller area (absorption is higher if you do this).
Another approach is to ask a female partner or friend to order estrogen patches for post-menopausal hot flashes and/or osteoporosis, and use her patches or gel.
Another approach is to tell the doctor at Estrogel.com that you want to transition to being a women and you want to use estrogen gel.
You may find that estrogen patches are expensive in the US. I order my Cialis from BlueSkyDrugs.com in Canada, but I'm sure there are other sites available.
Hope this helps.
Bob
Here are a comparison of side effects of using estrogen patches while on ADT. There are a lot of proven benefits to using estrogen patches.
A rheumatologist or orthopedist might give you better service on the bone density issues.
"won't be in her bailiwick"....................... What about making house calls?
Good Luck, Good Health and Good Humor.
j-o-h-n
They (My MO) also wanted me to stop ADT but I refused and here I am six years after my polimetastatic PC in my bones with distant Mets diagnosis. I can't even say that I am suffering from ADT side effects. I am just happy that I am still alive.
Which ADT side effects do you experience that you want to stop your treatment?
I am on degarelix injections and recently also introduced Bicalutamide and I feel totally fine. Very happy that I am still alive.
Did they radiate your bone Mets?
I am on Degarelix, two injections so far and have just added bicalutimude as well. Glad to hear you are doing well on the combo. I feel pretty good too so far. Start IMRT on Monday.
@Seasid Our cases are too dissimilar. Mine was graded circa early 2022 4+3/3+4 Gleason, PSA was 30, oligometastatic low volume. My two PSMA-PET/CT scanned bone spots were small and the onco team suggested 60 Gy RT to the prostate + vesicles and 24 months of ADT+abiraterone was likely to do the job. So far so good -- undetectable PSA since shortly after RT ever since. No RT to bone mets nor LNs. No more scans since 2022 either. I am extremely fortunate!
Early on I decided to amp-up exercise (aerobics, resistance, and as of February an elliptical trainer) daily (2 core hours) and long hilly walks on top of that. This is said to offer the most certain likelihood of reducing morbidity from PCa, CVD, etc. Also keeps the mind sharp.
Out of concern for some very long term side-effects of ADT and given my excellent progress, it was my MO who wants me to stop ADT. I will continue to be a monitored patient. So it is not a vacation in the sense that I wanted it, but rather the next step in my personal treatment plan. A step that can be reversed when/if the situation changes.
I'm on prolia, I have cancer induced osteoporosis.
My MO recommended prolia and then referred me to an endocrinologist for confirmation.
The endo prescribed a one year supply, 2 shots. Both delivered by my family doctor.
Going forward the family doctor will prescribe and deliver the injections.
I will do a follow up with the endo at the end of year 1 for a dexa scan to check efficacy. I assume any further follow ups will be negotiated with the endo at that time. I assume it's the endo's call on when and how to stop prolia, if that's possible.
At some point I may be switched to Xgeva, that is the MO's call. Even though your MO is not managing your prolia he will be in the loop on your electronic medical records. Switching to xgeva typically happens after you progress to castration resistance which is your MO's call.
It sounds like if you are not receiving any further cancer treatment the MO will no longer see you which is kind of understandable. You need to ensure you have all your other specialists lined up to continue relative treatments and make sure your family doctor is looped in.
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hope that helps.
Duration of ADT
PSA Went Up After Start of ADT
How's your whiskers after ADT? 
18 vs 24 months of ADT + Zytiga after locally advanced PCa? 
