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Hormone therapy not working

Daddysgirl25
Posts: 25
Joined: Apr 2011

Hello all,
I'm looking for some help in deciding what to do next with my dad. He was diagnosed in march with Gleason 9 and extensive bone mets. His psa was 200 at the time. He started on Lupron for the first month and he psa dropped to 45. Then was switched to firmagon which his urologic oncologist and urologist thought would be Better for him. His psa was Like a roller coaster, up and down for 5 months with the lowest being in the 60's. They then switched him back to Lupron with 50mg casodex. First month it went down to 35 and we were all elated! We thought it was finally working and going in the right direction. Then the 2nd month on Lupron/casodex went to 88. Went to oncologist he took him off casodex. 2 weeks later his urologist took his blood after he gave him his Lupron and it was down to 78. Then 2 weeks later went to have blood drawn again because it was 30 days off casodex(which dr. Thought may have been causing his psa to rise) and psa was at 106. Today he's going for a bone scan and catscan to see what's going on in his body. Tomorrow we meet with a new oncologist at Cleveland clinic to go over the results from his scans. He hasnt been feeling good and has lost 10 lbs in a month. He told me today that he wants a good quality of life the dr mentioned zytiga and chemo as possible options depending on the results. Just wanted some input before we go tomorrow. I was thinking of making an appointment with dr. Snuffy meyers since this seems to be his area of expertise. I'm always researching and reading the posts on here to get info. I just want to make sure I'm doing everything I can to help him. I'm so sorry for everyone having to go through this. It's devastating! But we will all stay strong or our dad. Please any info/ suggestions will help. Thank you in advance!

VascodaGama's picture
VascodaGama
Posts: 1544
Joined: Nov 2010

Daddysgirl

I am sorry to read about the increase of PSA. However, HT may still be working in your dad’s treatment.
One question/request to his doctor(s) is about the inclusion of a 5-alfa reductase inhibitor drug such as Avodart, to get your dad in total blockade.

I start to think that the oncologist or the urologist or both are not doing things coordinately. One changes drug the other stops another drug, .......... What is going on???????
Why should there be a need for two specialists to handle your father’s case?
Why have drugs been changed at the beginning and why should Casodex been stopped before certifying that your dad is hormone refractory?

I would agree with you in changing doctors not drugs. Consulting Dr. Myers is the best you can do to your father and it is my advice to do it the soonest.

Return to Lupron, keeping Casodex at 150mg/day and adding a 5-ARI like Avodart seems to be the best protocol. Avodart will lower the DHT (powerful form of testosterone) dihydrotestosterone which will also help Casodex to work better. Lupron is working in lowering the testosterone levels in the body while the Casodex and Avodart will avoid androgens from attaching to cancer cells.

Your dad should get a testosterone test done to ascertain for the drug’s effectiveness. He should also do additional tests to certify for metastasis in bone and bone health markers; such as the bone resorption marker (urine) deoxypyridinoline. This will check for the effect of Xgeva.
BHP may also exist. You can ask the doctor tomorrow if the CT scan shows any increase in the size of prostate.

If the protocol stops working then your dad should start a second line HT with Ketoconazole or Zytiga (abiraterone), continuing with Lupron.

You should discuss the above with your newer oncologist.

Wishing luck to your dad.

VGama

Daddysgirl25
Posts: 25
Joined: Apr 2011

Thank you so much for your response. I always enjoy reading your posts as you seem so knowledgeable on the subject of pca. Im sorry that youve had to go through having pca to become so knowledgeable. We were seeing two doctors because one was just a regular urologist and the other was a urologic oncologist. The urologist didn't know what to do because his psa was all over the place so he sent us to the oncologist. That's when the urologic oncologist took him off casodex. However that same doctor two months prior had said we would increase the casodex to 150 if needed. Then When we went back last week he said no that wasn't an option. So now when you said to go to 150 with the casodex I'm starting to think maybe this dr isn't doing the right thing. I'm so happy to have all the info you gave me to bring to our meeting tomorrow with the new oncologist. Hopefully he will be on the same page as we are. And I want my dad to go to dr Meyers but he has been so tired and weak lately that he doesn't want to travel to virginia. We are in florida. I can't thank you enough for your post today and in the past. It really helps me a lot! I'll see how everything goes tomorrow and post after. Thanks again!

VascodaGama's picture
VascodaGama
Posts: 1544
Joined: Nov 2010

Daddysgirl

I hope we are right on the same “page” with the doctor. The urologist as you mentioned did not exactly know what he was doing when he changed Lupron with Firmagon. Both drugs are very effective in stopping the testes from producing testosterone but they work differently. One is an agonist sending signals/orders to the testes to produce more testosterone (causing a flood in the pipeline and therefore a stoppage of production), and the other is an antagonist attaching itself to the receptors at the pituitary prohibiting the signals from being sent to the testes, and in that case stopping the “manufacture” of testosterone.

Both drugs work at the pituitary and both drugs take time to lose their effects in the brain. The effects of the two together may cause a series of bad events at the pituitary which can lead to Pituitary Apoplexy. This is a very bad status that causes blared vision and impaired recognition.
The "orders" for stopping testosterone production may have not been passed correctly. Your dad probably was on an intermittent status with testosterone going in all levels. Only through tests can we verify the existing testosterone levels. The PSA does not indicate anything in that purposes.

Antiandrogens like Casodex are usually stopped when a patient becomes hormone refractory. The reason is that antiandrogens have a structure similar to the testosterone, and due to the low levels of real testosterone available (the testes are not producing it anymore), cancer starts “feeding” on the Casodex itself. This is the reason why Casodex is withdrawn from the protocol and is replaced by a different drug that will suppress the “feeding” by other means.

When the PSA increases and the testosterone and DHT are low, hormone refractory is diagnosed (HRPC). In any event, oncologists will judge such conclusion only after doing a series of tests.

It is typical firstly to change the potency of the drug and then change the drug to another of the same type (ex; Casodex to Finasteride), before moving on to a second line HT drug. Only after certifying that the hormonal therapy has failed totally will chemo be recommended.
Some doctors prefer to start chemo earlier while the patient is still cancer hormone dependent, but the side effects of chemo are worse.

HT can cause weaker bone so that your father should get a DEXA (bone densitometry test) to check for osteoporosis. He may need to start taking a bisphosphonate similar to Fosamax. Discuss the matter with his doctor too.

Your dad needs to find a proper oncologist specialist on targeted medication. Some drugs interact with medications for other illnesses and constant follow up is required.
He should also be aware of the side effects. I hope that the new oncologist gets it right and that your dad gets better.

VGama
Note; I am not a doctor just an avid student of anything related to my disease since being diagnosed in 2000.

Daddysgirl25
Posts: 25
Joined: Apr 2011

Hi,
So yesterday we went to meet with the new oncologist. He reviewed my dads bone scan and cat scan and said he has a few bone lesions and some lymph involvement but that not much has changed since his last scans in march. We were relieved to hear that since my dad hasn't been feeling well the past month and has been losing weight again. We were nervous that he would say the cancer had spread more. He then gave us two options...provenge or chemo(taxotere). He recommended chemo. I asked about avodart he said no that's not something he would recommend. Then I asked about zytiga and he said the same thing and that he recommends that after chemo. So my dad was in agreement with starting chemo because he just wants to feel better and this dr said taxotere has little side effects and would make him feel better since it would killl the cancer not being taken care of by HT. I asked about doing further tests and he said they're not necessary...the chemo would take care of everything. I asked how he knew my dad was hormone refractory and he said theres no way to know "for sure" since there's no definitive test but that from his rise in psa we can figure that that's the reason. However my dads psa is still down from 200 in march. So confusing...
From there we went to my dads urologist to get his Lupron and xgeva shot. Coincidentally these two appointments were on the same day. We told him what the oncologist saiid and he was in total disagreement. He said chemo is our last line of defense and he doesn't think my dad is ready for that yet. He said there are other things we can do first . So he put him back on casodex and he said we will see how that works for the next few psa's and go from there. Possibly adding abitrrone( sorry not sure how to spell). He said his psa #'s while not where we want them are basically stable. He said it hasn't shot up so it's not time to do something drastic like chemo. And the last time his testosterone levels were checked it was at 19. Can it go lower than that? I also asked him about avodart and he said he didn't want to add anything else yet because he wants to see how the casodex/ Lupron will work now that he's back on them. How many months should we give it to see if it's working or not?
Sorry for such a long post...just trying to include all the info. We are more confused than before. But my dad is happy to be postponing chemo for the time being. Just one last question. The nausea and weight loss that he's experiencing...any idea what could be causing that? It started again after he went off casodex.
Still considering dr Meyers as soon as my dad is feeling better...
Thanks for your help!

tarhoosier
Posts: 182
Joined: Aug 2006

I have re-read your post, and if you relate the oncologist report correctly then he is seriously misleading your father. To say that Taxotere chemotherapy has "little side effects" and will "make him feel better" is unsupported by any evidence.
Generally, a patient follows the least toxic treatment before advancing to the more serious drug. This means secondary hormone manipulations would come before chemo-therapy. This is sometimes leapfrogged in patients with rapidly advancing disease and debilitating symptoms. I do not read your father's condition this way.
Weight loss is certainly a concern. Is he eating and sleeping within normal bounds? Does he have other health issues that are unresolved?
A major problem with second opinions is how to reconcile discrepancies. Your father has had a mediocre response to hormone treatment and changes are likely in the near term. It is he who must determine what he is ready for; but only with the advice of a compassionate physician. Does this doctor qualify?

rch
Posts: 79
Joined: Nov 2011

Hi daddysgirl
Sorry to hear about your dad's condition. Did you relate his nausea and weight loss to the Oncologist ? One of the major side effects of Taxotere is n/v !! I think your dad needs some sort of a work up to r/o an alternate cause of his dyspepsia. Please see your Internist. I think he would need at least a CBC/Creatinine while on Lupron among other labs, and Calcium/Vit D if on Xgeva.I wouldn't think he would need to be on a biphosphonate if on Xgeva. I agree with the other posts that Chemo is the last resort.

Daddysgirl25
Posts: 25
Joined: Apr 2011

My dad just had a lot of bloodwork done on Thursday. I'll see if any of those items you mentioned were part of it. His oncologist asked for this. Yes we told the oncologist about the weight loss and he didnt seem concerned. He said the chemo would help with that because it would make him feel better. Which surprised me because I had thought the opposite would happen since like you said 2 major side effect are nausea and vomitting. Obviously this oncologist really likes chemo. He made us feel that it would be a walk in the park. My dad is already frail as it is. He's 6'3 156 lbs. right now. Glad we are holding off. Hes only been fighting this monster since march! We have a long way to go and hopefully many years ahead! He's my best friend and I just want to make sure I'm doing everything I can to make sure we're doing the right things. Thanks for your help:)

Daddysgirl25
Posts: 25
Joined: Apr 2011

My dad as far as we know doesn't have any other health issues. He had lost around 30 lbs back in march which was the reason he went to the dr in the first place. That's when he was diagnosed with gleason 8 and bone mets. He wasn't someone who EVER went to the dr. Once he went on HT he started to eventually feel better and he gained back around 20 lbs. It's only been the last month or so that he's been feeling nauseous and started losing weight again. (around the time he went off casodex, not sure if that had anything to do with it or not). Now hes back on casodex and hopefully he'll start feeling better. And the question about his dr being compassionate....well he never spent much time with us before until the other day when he was so against the oncologists recommendation for chemo. Then he finallly spent some time explaining things to us. I'm not a big fan of his but my dad feels comfortable with him so that's all that matters at this point. And thnx for your info about the chemo...i agree 100%. let's try things less toxic first. We know chemo is in his future but hopefully not in the near future. Thanks for your response!

VascodaGama's picture
VascodaGama
Posts: 1544
Joined: Nov 2010

Daddysgirl

You are a beauty Daddysgirl. Your dad is lucky to have you and you are doing it the right way. He will improve his conditions and pay you back with LOVE.

It is hard for me to understand the facts behind his treatment. Who to trust or whichever is better is always difficult to pinpoint in cancer matters. Let your father judge what is better for him, what makes him comfortable, but support him in understand what may be wrong. Surely a second opinion from an oncologist of the grade of Dr. Myers would be excellent.

Xgeva may be the cause of nausea symptoms (RCH is correct). You can read about precautions when taking the drug while on hormonal treatment. Pharmaceuticals say this;

“....Monitor calcium levels and administer calcium, magnesium, and vitamin D as necessary. Monitor levels more frequently when Xgeva is administered with other drugs that can also lower calcium levels...”

Lupron lowers the testosterone levels in the body which causes bone loss, therefore insufficiency of calcium in other body functions. Guys on HT are always recommended to check their bone health with a Bone densitometry test (DEXA) and the testosterone levels. If osteoporosis is found counter measures must be taken. Hypocalcemia must be looked upon, administering calcium and vitamin D as necessary. Nausea can be related to the lack of calcium which is critical for normal cell function and bone structure.

Another side effect of Xgeva is Osteonecrosis of the Jaw. Your dad should have now a mouth checkup and do repairs if needed. (search the net typing the drug’s name and effects)
The common effects are fatigue, nausea and hypophosphatemia. Though, all of these can be controlled with diet and side medications.

I would discuss the matter with his doctor; however, it is common to read that urologists are not aware of this fact so that they tend to skip such precautions.
Oncologists engaged on targeted medications are more meticulous in checking drugs effectiveness and interactions.

I hope that 2012 brings peace of mind to you your dad and the family.

Have a good year.
VGama

Daddysgirl25
Posts: 25
Joined: Apr 2011

Thanks so much! No one ever mentioned getting a bone density scan. He just had a bone scan last week but I'm assuming that's different. We'll see his urologist next Friday and I'll bring that up to him along with checking his calcium and vitamin d levels. I just picked up a liquid calcium/vitamin d3 supplement for him. He's not great at taking pills so i was happy to find the liquid form. Youre right, It's very hard to decide who to trust at this point.
I'm hoping my dad will start feeling and eating better so he feels strong enough to go to Virginia to see dr. Meyers. That's my goal for him. But I must also respect him and his decisions. He's happy now with Lupron/casodex and no chemo for now. So we just pray that this will help him. I'm pregnant and we just found out we're having a little girl. The first girl in the family. I just want my dad to be here and have a good quality of life for as long as possible. Thanks again...

rch
Posts: 79
Joined: Nov 2011

Daddysgirl
Because of his extensive bone mets , please do not start Calcium/Vit D before checking the levels from your doctor first.

licnats
Posts: 1
Joined: Jan 2012

HI Daddysgirl. What a daughter. I have been reading your posts.
I am 61 years old with recurring prostate cancer. Since having my prostate removed in 2007, I have been constantly researching treatments if it came back. I have been to
Germany, Dr. Block in Chicago, Cancer Treatement Centers of America, John Hopkins, consulted with MD Anderson and many experts. I have landed with Dr.Myers. Knowing what I know now, if at all possible, I would encourage your dad to see Dr. Myers as soon as possible.

Daddysgirl25
Posts: 25
Joined: Apr 2011

Thanks licnats! I'm sorry you're dealing with recurring prostate cancer. I hope that with dr Meyers help you find the right treatment and beat this terrible disease. He is the person that I'd like to care for my dad. I'm just hoping my dad will gain some strength soon so he'll be willing to make the trip there. You've been to some impressive cancer centers and it says a lot that you are happy with dr Meyers. If possible can you share some of your history with me? What treatments you've had and psa numbers? What recommendations did dr Meyers have?
Thanks a lot!

jogger
Posts: 47
Joined: Nov 2009

Dear Daddysgirl,

You're lucky to have come to this forum and have gotten such good advice. I'm not writing to give you further advice but merely to say that I must have been lucky since I started my journey with a PSA of 800, Gleason 9, with the cancer still within the capsule. I was treated with Firmagon, and while the injections and side effects are not exactly a cake walk, I (or I should say, Firmagon) managed to get my PSA down to .5 I'm now 'on vacation' from treatments. I'm wondering, maybe your father has an advantage with his hormone treatments in the sense that normally hormones can cause weight gain, as in my case, which can be a problem, but since your father had lost weight before he began treatment, hopefully the weight gain will not lead to cardiac and diabetic problems, which occurs in some cases. BTW How old is your father?

Daddysgirl25
Posts: 25
Joined: Apr 2011

Wow! That's such great news to hear that you responded so well to the firmagon., especially with your initial diagnosis. And that you're on a vacation from it. Firmagon didn't help my dad so much so they switched him to Lupron/casodex. I know that the side effects of HT are definitely not a cake walk by any means:( I'm always trying to figure out if the fatigue my dad is experiencing is normal. Sometimes it seems like he's napping all day. I know fatigue is a side effectof the Lupron but it seems excessive some days. He goes backon Friday to get a psa test to hopefully show a decrease. He is 66 years old...diagnosed march16, 2011. Thanks for your reply! It means a lot to me to hear of people having success in their treatments. It gives me hope...

barry2468
Posts: 9
Joined: Jan 2012

I would like to add to this post my experience with controlling PSA in the hope you can get something from it. Started nearly the same time as your Dad. I am 75. PSA reading 116. Calodex for controlling flare for 1 month then on to ELIGARD. 3 months later PSA down to 0.17 and it stayed there for 10 months. Before I started my weight was 85kgs but when I reached 116 PSA that had dropped to 73 kgs. Bone mets scan before I started were not good and plenty of pain. After 3 months scan showed all mets had stopped and of course the pain went in 2 days after the injection. Another needle in Nov 2011 when the PSA started to rise again to 21. In 1 week this had again dropped to 0.21 It is not a cure but if I can continue in this way it is all I can hope for. Chemo is the very last step in the medication line and it should not be tried until all other avenues are exhausted. Different ADT's can give different results. For me if Eligard ceases to work I will go on another one and another one. Leave chemo to the very very last. All the best in your quest Daddy's Girl. Barry

Daddysgirl25
Posts: 25
Joined: Apr 2011

Thanks Barry....I'm going to mention the possibility of trying another ADT on Friday when we go to the dr. Last Tuesday his psa came back at 111. Only up a point from last month but he's been having a lot of pain lately so I feel like something's going on and something needs to change. Dr did mention possibly starting zytiga. So amazing that your psa went down to 0.17 on the eligard. So happy for you! The lowest my dads went was to 35. Maybe we just haven't found the right meds for him? he's just Been so tired, weak, and miserable lately. This is not a great quality of life for him right now. And a few weeks ago the bone scan showed no difference so it's not like the cancer has spread and that's why he's feeling so awful. It's hard for me to see him like this. We just need some answers. No one has any answers to why he's losing so much weight and feeling like this. Sinc he can't travel too far we r going to the Sylvester cancer center in Miami in 2 weeks...hoping they'll have some answers or us. Thanks and good luck to you on your continued journey...

VascodaGama's picture
VascodaGama
Posts: 1544
Joined: Nov 2010

Daddysgirl
I am very sorry for the pain the cancer is causing in your family. I hope you find “clues” to the problem in your next meeting with the doctor.
The negative bone scan is a relief, but the symptoms your father present indicate we all are out of “focus” in our judgements. HT drugs cause nasty effects in some patients. I have experienced fatigue from the start and some pain in my joints but managed to counter the effects with a change in my life style. I hope his doctor gives him some advice on counter measures.

Hope the problem gets better after the next meeting.
VG

jogger
Posts: 47
Joined: Nov 2009

Hi VG,

Now that Daddygirl's' father has sadly passed away one wonders, are there any lessons to be learned about the severity of his condition and the course of treatments he underwent. It may be, even though Daddysgirl gave a detailed account of his case, we may not have had the complete picture so that it is hard to judge what might have been done differently. I would be privileged to learn what lessons you think can be drawn from this sad case.

Jack

VascodaGama's picture
VascodaGama
Posts: 1544
Joined: Nov 2010

Jack (Jogger)

My connection to Daddysgirl’s father was that as others in this forum. A fellow patient/comrade on the other side of this screen.
I took his case more personal because of the sympathy of his daughter confronting the doctors while seeing the father deteriorating each day it passed. I could see the cynicism between his doctors, each one pushing to their basic believes in the treatment.

This is common in doctors when there is uncertainty about the optimal treatment course. The ego in the trade takes physicians to intervene with regards to their status. In other words, the treatment provided depends more on the physician who is treating than on the specific characteristics of the patient's disease.
Both doctors erroneously imposed their way above what Daddysgirl’s father needed. And they did it without a proper follow-up with due tests.

In cancer treatments it is common to hear doctor disavowing on other physician’s practices. The reason is the lack of due standards of treatments common to all medical trades. Urologists follow AUS, oncologists follow ASCO, radiologists follow ASTRO, etc.
In Dadddysgirls’father a simple test on the lipids would reveal his anemia problem. They found it but in a late status.

I cannot understand why doctors do not recommend periodically a full collection of tests in cancer patients including the ones that are not directly targeted to the sickness. Drugs are done to be taken by everybody but each person reacts differently under the same medication. Only through tests one can ascertain on the reactions and on the progress of the treatment. Previous tests are always utile for comparison. Nothing is lost by having them at hand.
How many times we read about guys on HT and with no testosterone tests or DEXA scans. How many guys have done a colonoscopy before being subjected to a radiation treatment?

I am very upset with his death.
I pray his soul is overthere looking upon us and that his daughter gets the deserved peace of mind.

VG

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