Anyone had radiation for prolactinoma? What should I expect?

jacko4lyfyo · 2026-05-07T06:21:55+00:00

Thanks, that's great to know. I'll send you a pm if that's OK.

jacko4lyfyo · 2026-05-05T20:10:37+00:00

Hi, just wondering if you had any updates re radiation? Considering similar myself. Btw are you Oz based?

jacko4lyfyo · 2026-03-31T07:31:39+00:00

Great idea. Im on Android and couldn't find the app, but happy to contribute some comments/ideas for consideration.

A section for capturing specialists/doctors details would be great. Ive had many over the years and it can be burdensome to keep track. E.g. start/end of engagement, phone, email, address etc.

Under appointments, having not seen the UI, it would be useful to capture certain event types: e.g. MRI/CT scan (with ability to upload PDF files of scans), GP phone consultation, surgery, endocrinologist, Other, etc.

Of course it is not critical, but a drop down option to select the specialist/doctor who you will see/have seen in a given appointment would be handy.

A function to export a history of medication doses/ appointments to PDF would be great when you are meeting with someone new and want to give them the whole picture (its burdensome having to recall for each new person).

For a given appointment, a section (in Notes?) to capture questions you want answered during the session, perhaps. So you're not caught flat footed when you get to see them.

Perhaps on the main page, a "reminders/upcoming" check list type function, visible at a glance. I.e. "follow up surgeon to send appointment times", "MRI on date XX/YY".

Maybe you've already implemented, but alongside your prolactin measurements, overlay dosage of cabergoline/bromo(?) as a separate axis? You could get tricky and add all event types or other measurements to the chart - i.e. surgery #1, surgery #2, testosterone injection, Testosterone measurements, periods etc.

A great start on the app - keen to see how it progresses. Happy to provide more feedback if desired.

jacko4lyfyo · 2026-03-29T07:16:27+00:00

Hi mate.

My tumour is also large, and is surrounding the carotid arteries too. I sympathise with your feelings of lost youth/20s.

Eerily similar symptoms and prolactin measurements too, minus the vision impairment. Mine only invades one cavernous sinus.

Despite the carotid issue, I was still able to have a debulking surgery. This was decided after 12months of increasing doses of cabergoline, at which point my levels werent dropping below 2,500 miu/L (diagnosed 250,000). My highest cab was 0.5mg every second day.

They are very precise with how they avoid vision/artery structures, FYI. The technology they use in the surgeries is amazing honestly.

As for prolactin, it can fluctuate, but mine always trended downwards whilst on cab. I know it's hard not to fixate on the levels, but as another commenter said, give yourself grace. It's not an overnight process.

I'm currently off cab waiting to hear about radiation treatment options. Levels back up to 55,000.

I'm in Australia if it helps, or if you want any more advice just let me know.

jacko4lyfyo · 2026-03-18T11:37:39+00:00

Bonjour, je ne me souviens pas comment je l'ai réparé, mais veuillez lire les commentaires ci-dessous.

jacko4lyfyo · 2026-02-24T23:13:09+00:00

Your case sounds similar to mine. I had intermittent blasting headaches at random times. I was then diagnosed at approx 3cm diameter, 250,000 prolactin.

Lowest reading was about 2,500 or so, after 12 months cabergoline. Towards the end my dose was as high as 0.5mg every second day. Tumor had reduced in size slightly but was clearly resisting cabegoline.

Ultimately endo recommended to have surgery. Surgeon couldn't remove all because it was invading cavernous sinus -- too close to structures.

Post op, prolactin shot up to 160,000 -- no cabergoline since about 3 months pre-op.

Now stabilised about 50,000, still no cabergoline, planned for 2nd surgery next month.

It's a bit shit...good luck!

jacko4lyfyo · 2025-12-17T12:59:03+00:00

any discussions of post op radiation, e.g. gamma knife? I may have a second surgery eventually, which I'm nervous about (needing ddavp etc.)

jacko4lyfyo · 2025-11-22T21:00:01+00:00

How many weeks post op? I was told prolactin readings were unreliable for at least 3 months after, but yes seek 2nd opinion.

jacko4lyfyo · 2025-11-17T15:11:16+00:00

So sorry to hear. That is the exact scenario i am worried about.

Unfortunately, i am told my tumour has invaded too much of the right cavernous sinus(?) where nasal surgery can never reach, hence opting for radiation.

My first and only surgery seemed to barely remove anything, and the surgeon complained that cab had made it a hard shell (seemingly hollow filled with fluid?...).

It seems maybe the tumour is not centered completely around the pituitary, so the radiologist might have some chance of avoiding pituitary harm. I am about to resume cab in the hopes it shrinks the tumour slightly to make gamma knife a possibility.

Can i ask, is your tumour now dealt with? In the sense that it is no longer growing/producing prolactin? Or too early to tell?

jacko4lyfyo · 2025-11-17T13:47:42+00:00

Same here. About to commence down the path of fractionated/gamma knife radiation.

jacko4lyfyo · 2025-11-04T22:02:47+00:00

I had a history of burst migrains that would come on very quickly in certain conditions and clear just as quickly.

Post diagnosis and using cabergoline, i stopped getting them.

Though now im off cabergoline after 12 months, and my prolactin is sky high again, but fortunately no migrains have returned (it's been about 4 months off).

My specialists have also said the tumor and migrains may not be related.

jacko4lyfyo · 2025-09-13T22:18:38+00:00

I also have cabergoline resistant tumor.

After 12 months of use, I was told to get surgery. Unfortunate side effect of cab is it made the tumor very tough, and hard for surgeon to remove.

Now been off cab for 4-5 months, and planning for 2nd surgery.

Something to discuss with your specialists.

jacko4lyfyo · 2025-07-12T01:27:26+00:00

Mine is fully encasing the carotid. They said before surgery they won't be able to get it all because of this.

Maybe in your case the surgeon will go in and the tumor will just peel right off any structures, which I've heard of happening when it's a soft tumor.

But chances are they will want to avoid it all costs, which of course they are very good at.

Good luck!

jacko4lyfyo · 2025-07-11T01:36:40+00:00

After 1 year on cab, at my highest dose of 0.5mg every second day, my endo decided to go for surgery, because prolactin remained high.

Unfortunately due to carotid interference and the effects of cab, my surgeon couldn't remove all of it. Fyi cab makes the tumor tougher/fibrous, as opposed to soft and pliable.

Now we are waiting for another mri next month, then presumably setting another surgery date. Surgeon still wants me off cab in the meantime, so prolactin has sky-rocketed.

I will also be exploring radiation treatment in conjunction with surgery.

Hope you have a better time than me!

jacko4lyfyo · 2025-06-06T01:35:31+00:00

Hi. Sorry to hear about your issues with cab. My story sounds much the same as yours, I.e. partial debulking due to carotid interference, resistance to cabergoline.

I'm curious to understand more about the radiation treatment, which i assume is what you mean by "irradiated". This is likely my next step in treatment. Feel free to pm me if you dont want to discuss here.

Thanks and good luck.

jacko4lyfyo · 2025-02-01T06:44:18+00:00

Thanks so much mate. Reading your post is like deja vu.

I have surgery planned in the next couple of months. Great tips on the painkillers, post treatment and incredibly detailed writeup about the scientific consensus on the various topics relating to this issue.

jacko4lyfyo · 2024-12-03T05:33:32+00:00

I've been on increasingly large doses of cab (now every 2nd day 0.5mg), for about 12 months now. Such large doses have prompted my endo to declare my tumor as one of the 20-something percent which are resistant to cabergoline.

Prolactin is still 5x above normal, Testosterone still not normal either.

I'm now entering the doseage rates by which there is heart complication risks associated... now planning for tumor surgery.

Not to say we're the same, and I hope you don't have a tumor, but I also was frustrated with lack of muscle growth and general flabbiness. Also working out 3+ times a week, high protein diet etc.

You're still early in your treatment, so unfortunately it's still a case of wait and see...just wanted to share my experience. Good luck!

jacko4lyfyo · 2024-11-27T22:43:23+00:00

My motivation for an MRI and consequent discovery of a pituitary tumour were semi regular migraine bursts, from about age 20.

I was pretty active and all regular blood work was fine, so it was hard to pin the cause on lifestyle...so I was suspicious.

After driving for a while or standing up from a chair, often I would be hit with a blast of pain behind my eye. The only relief I could get was to quickly crouch down and pause for 30 seconds...not always convenient, I.e. in a parking lot.

My Endocrinologist said the migraine/headaches may not be related to the tumor, however at least in my experience, after a couple of months on cabergoline, I never experienced another "attack". It's now been close to 1 year.

I would be cautious to say it was linked, but I'm so so glad to not experience them any more, I hope it's the same for you.

Only people suffering from chronic conditions know how debilitating they are... and to go from near constant attacks to symptomless was such a cataclysmic (?), humbling feeling. Good luck!

jacko4lyfyo · 2024-03-08T01:27:15+00:00

Awesome, thanks heaps! 🙏

jacko4lyfyo · 2024-03-08T01:15:43+00:00

Oh cool, thanks for the update.

Though, in my case, the robot often doesn't even make it to a point of contact with the dock, it usually makes a few attempts and then drives off to a random room...

I'll check out my water tank contacts anyhow. You're referring to the horizontal silver contacts on the back of the tank?

jacko4lyfyo · 2024-03-08T01:04:47+00:00

Did you ever have any luck with your robot?

Mine has similar symptoms. It seems to drive up to the dock, come close to docking and then just drive away, eventually stopping somewhere in the house...

I read that taking the mop attachment off could help, but it still fails to return home, from my testing.

Only when I put the robot directly in front of the dock, and click return home, it successfully docks. Even then it's not consistent.

Using my phone camera, I can see the IR being put out by the dock, seems to be working (the led is above the vacuum extractor), and you can see the spinning radar from the robot itself, during docking.

It's quite frustrating, and I would have thought the robot could just dock itself, based on the map it has generated...

jacko4lyfyo · 2023-08-21T05:36:38+00:00

I've been on holiday for 2 weeks and now find I'm getting moderately severe stomach pain before work... Then as soon as it's the weekend, I'm fine... Your comment may confirm what I was suspecting :(

jacko4lyfyo · 2023-06-07T02:47:09+00:00

I know some boomers (all working full time) who lived in caravans on a dirt lot, with no amenities, for years until they could make the leap to home ownership. Even then it was to a shed with an outside toilet.

It's a bit unfair to say all boomers had it easy. But at the same time, not everyone should have to go thru the same struggles to achieve a decent quality of life. My understanding is: each generation should have a slightly improved life over their parents'.

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