2 Years undetected

[Chrisbaird]

I have been on Zytiga 50gm daily taken an hour before breakfast + 5 gm prednisone with meal 3 monthy H T injection of Protrap for past 2 years with monthly blood tests resulting in PSA below 0.01 not been seen a consult in the 2 year only online call from pharmacy oncology. Should I insist on a medical scans to determine my present situation with cancer cells and my progress I suffer with hot sweats and fatigue reasonable badly hot sweats more in summer period Exercise daily walking for an hour wondering if I should insist on examination Think if NHS in uk was not having so much delay I might have been seen

[Benkaymel]

It sounds like you're doing well but I'm surprised you've had no consultations with your MO at all for the 2 years. I'm on similar treatment except Xtandi rather than Zytiga but I have quarterly consultations and periodic scans even though my PSA is 0.05.

Which hospital trust are you under?

[Chrisbaird in reply to Benkaymel]

Ayrshire and Arran Scotland. I know I’m surprised not seen anyone face to face or scans of any sort 🙄

[Deryck7 in reply to Chrisbaird]

I am in Highland and in the same situation for 3.5 years

[Chrisbaird in reply to Deryck7]

Seem UK health service is stretched even cancer referrals are not seen for updates 😏

[Deryck7 in reply to Chrisbaird]

The NHS here are very good and helpful with the consultations. I have had spoken to oncologists a few times.

[binati in reply to Benkaymel]

You should have kidney and liver function tests as well as CBC at least once a quarter. Scans are needed probably once a year as I learnt from MD Anderson.

[Tall_Allen]

The dose of Zytiga should be 1000 mg/day taken without food.

[Chrisbaird in reply to Tall_Allen]

Tall- Allan I started on 1000gms but after3 months I had liver enzymes problems so oncology cut me down to 500gms stayed on that rate as PSA was reducing still

[Tall_Allen in reply to Chrisbaird]

In that case, I agree with you that a scan every couple of years is prudent. The scan should be the same kind that you used at baseline.

[JWPMP in reply to Tall_Allen]

So if someone is undetectable for a few years, they should have scans anyway? Jim has had no scans since May 2021. No one has mentioned more scans. He has zoom appointments with oncologist every 3 months and bloodwork monthly including cmb.

[Tall_Allen in reply to JWPMP]

It depends on your situation.

[garyjp9 in reply to Tall_Allen]

TA, can you please elaborate? For instance, would you encourage a scan in the case of the person who posed the question (JWPMP)?

[Tall_Allen in reply to garyjp9]

One of the bad things about a public forum like this is that people will see what is meant for someone else and not see how their situation is different. What I wrote was only meant for Chrisbaird.

[Ian99 in reply to Chrisbaird]

Did you ask about Prednisolone? In people with liver issues it is often preferred because prednisone must be converted by liver enzymes to prednisolone before it can work.

[j-o-h-n]

Looks like you need a Medical Oncologist on your team and scans....... Guys here know their stuff......

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 08/27/2023 1:03 PM DST

[dhccpa]

I assume you're not metastatic. Have you had surgery or radiation prior to hormone therapy?

[Chrisbaird]

not had surgery or radiation any tests apart from monthly bloods

[Ian99]

I am on Zytiga (1000g) and Zoladex. Six monthly scan comparisons are driving what happens next. If no radiographic progression, we carry on. Recommend you ask about regular scans in addition to your current treatment.

[Chrisbaird]

sounds from comment from others I know what to discuss at my next phone consultation in months time. Thanx

[PBALLEN]

Yes Chris I was taking the same program for two yrs. I had Lupron shots every 6 months and zytiga. I got blood work monthly which was reviewed by docs.. then saw oncologist every three months. I am one year out post treatment and have PSA of 0.06. I felt better seeing the doc on a regular basis. So I’d go see someone.

[fmenninger]

congrats on your success on zytiga as you may want to challenge your remission and get off but it’s up to you.

I built a cheap diy bed fan to help my night hot flashes for better sleep!

Stay strong

[Chrisbaird in reply to fmenninger]

thanx fmenninger I have a good fan beside my bed which I switch on regularly during the night I’m thinking it’s more the H T drug that causes the sweating worse in summer months Zytiga more fatigue and energy situation which I have adapted too and can rectify easier but thanx your thoughts. Input from others on my question has cleared my thoughts

[fmenninger]

I had a stint with zytiga but my liver twitched as ast and alt levels maxed out at 5x beyond normal so I has to get off it at 1 year mark even at a much lower dose.