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Prostate Cancer fluctuating PSA

MsHope profile image
15 Replies

This was my last post several months ago

2 Lupron injections (6mo shots) Psa was 1800 now 442. CEA 24.1 now 11. Does any one know why Lupron is not reducing PSA. It is going down each month. My husbands PSA decreased to 372 and his CT/Bone scans have not changed since being diagnosed over a year ago. The question I have is at times his PSA will fluctuate. It has gone up 50 points then next month goes down 125 points. This monthe i went uo 78 points. He has another appt in Nov. Does anybody know/understand why PSA fluctuates. His Doctor says he does not understand why it is fluctuating. Thank you

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MsHope
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LearnAll profile image
LearnAll

PSA staying 300 range is not a good thing. Obviously, Lupron is unable to get his PSA to acceptable level which ideally should be 0.2 or less.

This 300ish PSA means his cancer is not controlled..

You need to ask your oncologist why Abiraterone should not be added to Lupron. ?

Alternatively, why he should not get docetaxyl chemo infusions ?

His treatment is UNSATISFACTORY ...to say the least.

MsHope profile image
MsHope in reply to LearnAll

Thanks for response. Onocologist at MD Anderson says since his CT/Bone Scans have not changed in a over year he is stable and last scans even showed improvement. 2 months ago his PSA went up 50 points the next month PSA went down 135 points. This month it went up 78 points. Both his onocologist are puzzled at the up and downs of PSA. I was wondering if other people had this fluctuation. Doctors say no other medication at this time.

Fairwind profile image
Fairwind

Is his doctor a Medical Oncologist ? Check to see what his testosterone is doing. Sometimes Lupron fails to lower "T" to the desired levels. Is he taking any other ADT drugs like Casodex or Zytiga ? When he was first diagnosed, what was his Gleason score ?

MsHope profile image
MsHope in reply to Fairwind

Testosterone are low. When first diagnosed his PSA was Onocologist at MD Anderson says since his CT/Bone Scans have not changed in a over year he is stable and last scans even showed improvement. 2 months ago his PSA went up 50 points the next month PSA went down 135 points. This month it went up 78 points. Both his onocologist are puzzled at the up and downs of PSA. I was wondering if other people had this fluctuation. Doctors said no additional medication at this time.

MsHope profile image
MsHope in reply to MsHope

His begining PSA was 1600

Tall_Allen profile image
Tall_Allen

PSA will fluctuate as the cancer is more or less active, and as non-PSA-producing cells come into being. When will he start the cabazitaxel/carboplatin regimen you asked about?

MsHope profile image
MsHope in reply to Tall_Allen

He is not starting on that. Onocologist at MD Anderson says since his CT/Bone Scans have not changed in a over year he is stable and last scans even showed improvement. 2 months ago his PSA went up 50 points the next month PSA went down 135 points. This month it went up 78 points. Both his onocologist are puzzled at the up and downs of PSA. I was wondering if other people had this fluctuation.

LearnAll profile image
LearnAll in reply to MsHope

I did not have any fluctuation..it was a steady decline from PSA 830 to 0.5 in total 5 months. I am on Lupron and Zytiga and some supplements and plant based diet along with daily dose of cruciferous vegetables and tomato soup.

Total Testosterone came down to less than 5 from 650 in 5 months.

This type of fluctuation is not normal ...I don't care if it is MD and or Not MD and....you need to get a second opinion from a regular, honest Oncologist.

MsHope profile image
MsHope in reply to LearnAll

He has 2 oncologist at MD Anderson Houston Tx

Brbnbrn profile image
Brbnbrn in reply to LearnAll

Just interested in what supplements you take and what veggies you eat daily? My husband started out strong on eating loads of fruit, veggies and fish a year ago after chemo and now is back to resisting that type of diet. His PSA recently went from .2 to .3 after a year of stability and I wonder if it has to do with diet? I need to find a way to excite him again (without the fear motivation factor that is!).

LearnAll profile image
LearnAll in reply to Brbnbrn

Here is my food and supplement list which I take :

(1) Everyday one of the cruciferous veggie (Brocolli, Cabbage or Cauliflower). Raw or cooked.

(2) One big glass of home made Tomato soup before dinner. I Do Not put any sodium (table salt) If really need, I use LOW SALT which has only 1/3 Sodium.

(3) A 3 inch long piece of Ginger. I eat it raw.

(4) 5 Garlics . I eat a very special type of Garlic a very small single clove Garlic used in Ayurvedic system . It is called Snow Mountain or Kashmir Garlic. Its available on Amazon

(5) 10 Almonds soaked in water overnight and eating early in the morning.

(6) Chinese Green Tea (Special Gun Powder Brand) 3 times a day.

(7) Very little Saturated fat and very little Sugar. If I need sweeting agent ,, I use Xylitol which looks and tastes like sugar but is not sugar.

(8) I do not eat any meat, fish or eggs. Only a cup of home made fat free yogurt and very little milk in my tea.

Supplements:

(1) Turmeric/curcumin caps 1000 mg two times a day.

(2) Quercetin with Bromelain Caps one cap two times a day.

(3) Red Yeast rice 900 mg two times a day

(4) Berberine 600 mg two times a day.

Please check carefully before using any of this as individual response may vary.

This concoction works well for me.

cuphalffull1 profile image
cuphalffull1 in reply to LearnAll

Thank you for sharing. I was recently diagnosed stage 4 with Mets and started a plant based diet a week ago to hopefully do something on the offense. Having trouble coming up with meal ideas, what are some of your main entrees? Thank you!

Bodysculpture profile image
Bodysculpture in reply to cuphalffull1

Stuffed baked peppers with Quinoa Fish and vegetable pie

Baked potato with Macarel and a green salad

Chicken breast with baked peppers carrots a handful of baby potatoes with parsley

Here are a few tasty ones

LearnAll profile image
LearnAll

Hi MsHope,

Let me alert you to something about the "center of excellence" in Houston. A friend of mine had prostate biopsy and was given Gleason 3+4=7 at his local hospital. He was put on Lupron and was doing very well.

He thought he should get a second opinion from the "center of excellence" They sent him a form asking for his credit card info and wanted him to sign giving them permission to charge the card "for any amount greater than $3000" He did not want to give blanket permission

and wrote on form that if providing a second opinion about Gleason Grade costs over $300 then not to proceed and return the slides back.

After a week ,the report came with a Gleason Grade of 4+4=8 and 4+5=9....and a bill of $285. He got very anxious and immediately sent his slides to another opinion to different institution...report came 3+4=7 . Still not feeling secured..he sent the slides to a third hospital and again the report came 3+4=7

So it became clear that the so called " center of excellence" exaggerated his Gleason Grade .

He did research about this institute and discovered that in 2010, this hospital was giving

proton beam treatments to patients who never needed it...and the regulatory authorities gave them a hefty fine.

Not treating his PCa properly can lead to worsening of his disease and I will not be surprised if they will offer proton beam or some other expensive treatment at that point.

EliasJ profile image
EliasJ

My husband was started on Lupron and within 6 mos his PSA dropped to 6.9, three months into treatment. By December of 2016, his urologist decided that Lupron was not enough since it seemed to have lost its effectivenes and PSA level was fluctuating 'out of control', so he referred him to an oncologist who started him on Xtandi which never not worked and PSA rose to 400+ by mid 2017. The oncologist then prescribed Zytiga. Initially, PSA levels fluctuated but then it began to drop and oncologist admitted his disbelief of new number but it steadily began to drop. His PSA level was 4.9 last month (9/19). Failed to mention his original PSA level in December 15, 2015 was 1148, also, he still receives his monthly Lupron injection.

We shall see what it will be in November and we continue to remain hopeful.

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