Are endocrinologists of any help afte... - Advanced Prostate...

Advanced Prostate Cancer

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Are endocrinologists of any help after ADT?

Derf4223 profile image
26 Replies

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?

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Derf4223 profile image
Derf4223
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26 Replies
Tall_Allen profile image
Tall_Allen

Which ADT SEs are most bothersome to you?

Derf4223 profile image
Derf4223 in reply toTall_Allen

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

Tall_Allen profile image
Tall_Allen in reply toDerf4223

Why are you stopping ADT. Just a vacation?

Derf4223 profile image
Derf4223 in reply toTall_Allen

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.

Tall_Allen profile image
Tall_Allen in reply toDerf4223

"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.

Derf4223 profile image
Derf4223

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.

dhccpa profile image
dhccpa in reply toDerf4223

TA probably won't see this reply unless you reply directly to his comment/question. He doesn't often go through all individual comments.

Lrv44221 profile image
Lrv44221

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

Alturia profile image
Alturia

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.

Gearhead profile image
Gearhead

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.

London441 profile image
London441

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.

john510185 profile image
john510185 in reply toLondon441

Absolutely right.

Lrv44221 profile image
Lrv44221 in reply toLondon441

I agree exercise is very important 💜

Explorer08 profile image
Explorer08

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.

janebob99 profile image
janebob99

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.

Bone growth with Estrogen Patch Therapy
mimgen profile image
mimgen in reply tojanebob99

How does one get a prescription for estrogen when it is not SOC?

janebob99 profile image
janebob99 in reply tomimgen

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

janebob99 profile image
janebob99

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.

Effect of Estrogen Patch Therapy
janebob99 profile image
janebob99

Here's a more recent version of the Patch Benefits slide...

Estrogen Patch Benefits
tsim profile image
tsim

A rheumatologist or orthopedist might give you better service on the bone density issues.

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

"won't be in her bailiwick"....................... What about making house calls?

Good Luck, Good Health and Good Humor.

j-o-h-n

Seasid profile image
Seasid

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?

NewMex profile image
NewMex in reply toSeasid

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 profile image
Seasid in reply toNewMex

I am not a doctor and I am unlike you not curable. I refused to add Bicalutamide years ago because of added toxicity while I was still in a hormone sensitive phase of my PC.

Derf4223 profile image
Derf4223

@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.

skiingfiend profile image
skiingfiend

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.

---

hope that helps.

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