I am here and posting on behalf of my father . He is 69 year old and is diagnosed with metastatic prostate cancer with mets to spinal cord . His PSA was 79.5 and Gleason 5+5. One month earlier doctors started hormone therapy (Lupron 22.5 mg along with Abiraterone and iron and calcium tablets ).
After one month his PSA dropped to 7.9 but ALP rose to 2655. For ALP i read that it will flare upto 6 moths after start of ADT . His hemoglobin in low (10) . Doctor says nothing to worry .
Can some one suggest how long this ADT will work before cancer cells being resistant to ADT.
Thanks
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jeetu_g27
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I am so sorry about your dad. I know the stress you feel and the sadness of the journey. My dad started his journey in Oct 2022 when he was first diagnosed at stage 4 with mets to 8+ bones and his cancer was very advanced. My dad never had a biopsy so we don't know a Gleason score. ADT is highly individualized in terms of how it responds and how your dad's cancer will do. But at this point you normally have years. We were told that there was three different types of hormone blockers we would use and each one has a shelf life that was highly individualized. My dad is on his third hormone blocker as his mets are very painful. He was hospitalized when his PSA was at 2.8 on xtandi this last February and his PSA doubled every month. This drug only lasted for about five months which was very short for the average . Our oncologist said he has patients with significant bone mets and no pain but he will let the PSA rise much higher to get extra months but my dads quality life life was low at that point with pain so we moved on to hormone blocker #3. He is now in Zytiga and it is working well but we suspect in his case it will only work about six months before moving to chemo and radiation. Again my dad is in the very short end of how these drugs work.
His oncologist and I had a long conversation the other day and he said a lot of metastatic prostate cancer outcomes have a lot to do with age. Each time it comes back it punches down and chips a way. But how long you are in individual treatments is highly dependent on how he responds. But you should have years at this point.
Given our dad's are 11+ years apart here is what I suggest. Diet is important and calorie count is even more. The year my dad's cancer metastisized he lost 40 pounds and I new something was wrong but he wouldn't go to the doctor. He has lost an additional 20 more pounds since. My dad was in a course to die from the weight loss and not the cancer. Ask to see a nutritionist right away.
Physical therapy is key. My dad had repeat falls. The oncologist said this was one of the largest risk of deaths to my dad. He is now walker dependent.
Stay active. At times we wanted to use a wheelchair at the VA due to pain but my dad wanted to walk with his walker. That was important.
Always have a health advocate at the doctor's appointment with him. Take notes. Ask about what comes after this line of treatment fails. My dad didn't want to know but we as he daughters needed to know.
Isolation. Is your dad single at this stage of life? Interaction is very important. My dad lived on his own and became more homebound. He fought us on assisted living and we moved him into a place that has both assisted and independent living two months ago and is doing amazing. He has so many friends and is no longer isolated.
Make sure someone has medical power of attorney.
Private message me if you want to talk further. You got this.
I've got 6 years over your dear Dad and based on his age I'm guessing he was in Nam while I had just finished my service........Tell him I wish him well and Thank him for doing his duty as an American..... God Bless...
My dad was corpsman in the Coast Guard and flew on search and rescue teams. June 1960-Aug 1964. He had extended his time by 90 days which brought him over the time for war.
I was in the Army from 1960 to 1966....Active and National Guard............ I tell people I was a USO Commando but no one gets the punch line......( It's an Old Normal joke that most people don't get, your Dad probably will).
Thanks a lot for your kind words and suggestions . Hope your dad live a healthy and long life . My dad and mom lives with me and was very active till February 24 . He was more active than me and was able to do all the gardening activity by his own.
In India typically we have many doctors who are only money minded , so after a lot of search i am taking consultation and medication from All India Institute of Medical science. Its very confusing and tiresome to find a good doctor.
when i asked about his rising ALP , doctor said its normal .
can you please suggest any diet plan that help your father in gaining some weight .
I am also planning to get some alternate therapy from Yeshi Dhodhen ( Doctor of Dalai lama, though he is dead) hospital . A Tibetan alternate therapy for cancer .Don't know if it works or not but we human can only try .
Its quite confusing and painful , but i am trying my best to help my father , he is my world .
Prayers for your dad and your Family in this tough times
I am so sorry. It is gut wrenching. Everything you are taught about eating went out the window. For example. An egg. If you eat a hard boiled egg it is about 60 calories. Fry that egg in butter and it is 300. The nutritionist we met with said "nothing goes in your dad's mouth unless it is 300+ calories." My dad actually went on a pie diet. Some doctors have a lot to say about sugar, we just wanted calories. He drinks milk and moved back to whole milk. Heavy cream in his coffee. He wAs drinking protein shakes but got tired of them. If your dad is. Normal weight switch everything that he eats to something that has more fat and calories. I learned about cancer cachexia about 8 months into his illness.
Yes , different doctors says different for diet , some says to avoid whole milk , dairy and sugar . some says it doesn't effect the cancer cells . its frustrating .
My father is vegetarian and he starts his day but eating neem leaves, as someone told " Neem induces cell death in prostate cancer cells by decreasing the levels of Bcl-2, an anti-apoptotic protein" . after this he eat one pomegranate and then drink 1 coconut water . Then he eat as per his normal routine .
Got some protein biscuits for him , but he doesn't like them ..
Hopefully some day medical science get some cure for cancer
In this trial they added Abiraterone to ADT which is now the standard of care for metastatic patients. Abiraterone is available in India. The trial concludes:
Clinically important improvements in survival from addition of abiraterone to androgen deprivation therapy are maintained for longer than 7 years. pubmed.ncbi.nlm.nih.gov/371...
Did your dad get PSMA Pet/CT? If not, try to get one for him. Depending on the findings radiation could be an additional option. And Taxotere (called triplet therapy in conjunction with Lupron and Abiratetone).
serum iron parameter is not available in report . I will check with the doctor why they didn't check it . going on Wednesday (1st may ) to meet the doc.
people respond differently and maybe adt with abiraterone and Lipton will work with your dad for years. I was diagnosed with stage iv, Mets in spine, neck etc and psa of 498 at 59 years old. That was 2016 and, after chemos and radiation, I’ve been on abiraterone and eligard since mid 2017 and with non detectable psa or Mets since 2018. I don’t have unrealistic expectations but am living a wonderful life, including going back to grad school again. Your father is lucky to have you. As for the iron, that was a red flag for me to when I red that. It’s worth looking into that to see if it’s necessary or part of the problem. Hang in there! Peace DougNOLA.
Thank you sir for your kind words and inspirational journey , means a lot ! My father is experiencing a lot of fatigue and weight loss . what did u follow to arrest or minimize these side effects?
for iron, doc said RBC and Hemoglobin is low so they are suggesting this . for chemo and radiation doc is saying that they will shift to these options when these Hormone drugs stops responding.
Hope you continue to live a great and healthy life and keep inspiring others .
He he. It’s interesting (to me anyway) since it relates to my cancer. When I was diagnosed w stage 4 cancer it was impossible for me to plan beyond 3 months in the future…for at least three years that went on. So I switched careers and became a public school teacher since I only had to commit to 10 months at a time(and I love teaching). Now, I’m going to grad school so I can become a school principal…life sure is interesting! Peace, DougNOLA ✌️
No one can answer that question. I started treatment in May 2020 and I'm not castrate-resistant yet; in fact, my PSA is still unmeasurable. You'll get many responses. Best wishes.
The short answer is that everyone is different in their response to these drugs. I was on Luperon and Aberaterone plus prednisone for a number of years until my PSA became undetectable and stayed undetectable for about a year. Then I went on a drug vacation for two years until my PSA started to rise again and now, I am back on newer medications, Eligard and Orgovix. Waiting to see what happens. I am 81. A younger friend of mine on same medications with same psa started a few months ahead of me on the meds. He is no longer with us.
Usually ADT works for a long time before cancer become ADT-resistant.
In your bio you write that he has metastasis in lungs. How is your dad? Is he active, alright or has he problems with other organs, pain, ... ?
Zytiga's prescribing information says that Zytiga's normal intake (1000mg daily) should be interrupted when the ALP is higher than 5x the upper limit of normal. ALP upper limit of normal is approx. 130, so Zytiga should be interrupted when ALP is >650 and restarted later with smaller dose when ALP is below 2.5x the upper limit. Look for "Hepatotoxicity" in the Prescribing information: accessdata.fda.gov/drugsatf...
What about his other liver markers - AST, GGT? Are they normal?
As for the anemia due to low hemoglobin. That maybe why he's taking the iron. He should be taking iron only if he has low iron. Do you know his iron levels? Anemia has many different causes. Often it is due to lack of vit. B12. Do you know his vit. B12 levels?
There is a small node present in lung . My Dad is fine now but have fatigue and weight loss. He was more active than me previously , me being 34 years old was way below him when it came to strength . But sadly now he is not that active
His SGOT/AST is 23.83 U/DL , before starting any treatment it was 198 U/DL.
GGT is 16 , before starting any treatment it was 27 U/DL.
His RBC(3.660 10\S\6/µL) and Hemoglobin(10g/dl) level are low , so doctor told to have iron tablets.
B12 tablet earlier they had given but during this visit 5 days ago , they discontinued it and added Zinc tablets
As for the weight loss. How much kg he lost? Does he eat normally? Doesn't he experience a loss of appetite?
AST levels are normal under 40 units per litre (U/L) not per deciltre (U/DL) which is 10x more. GGT levels are normal under 30 units per litre (U/L) not per deciltre (U/DL) which is 10x more. If those AST and GGT levels that you write are really per deciltitre than you dad's levels are 10x more than normals.
Frankly I don't think ALP of 2655 is "not to worry" as the doctor says. Zytiga's prescribing information says that you your dad should interrupt taking Zytiga. Abiraterone (Zytiga) is one of the 2nd generation ADT, others are enzalutamide (Xtandi), darolutamide (Nubeqa). They are similar. Maybe your dad could try to switch for example to Xtandi which is not that liver aggressive?
You may try some liver supplements for the liver toxicity: I don't know what supplements are in India. In Europe we have this: essentiale.com/en-ph
Above are sanp from the report ,the SGOT /AST level , i mistakenly typed it as U/dl , its U/L . Apologies for that .
He loose approximately 10-12 kg in three months . He eats normally , basically is a vegetarian , now starts his day with neem leaves empty stomach , then pomegranate and then one coconut water . After that he eat normal Indian food (Chapati and vegetable) .
For ALP i will again visit to doctor this Wednesday and ask him .
India - People usually do not build the team. I request you to build the team that include Urologist, Medical Oncologist and Radiations Oncologist. Also visit them after each report and understand their opinions.
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