Update - Advanced Metastatic Prostate Cancer
Comments
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More about those hot flashesVascodaGama said:A matter for concern but not to become anxious
Grace,
My comment regards to your description on his symptoms. The Hot-flashes situation should improve in time as our body temperature clock regulates to adapt to the lower level of androgens but in his case it got worse, which cause should be investigated. It is an expected normal condition as commented by Old Salt above if such shows improvement. In my lay opinion I see it as a red flag risen by our body informing us that something is not proper. Surely the symptom in some guys is more acute than in others but the feel of improvement should be there.
Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.
VG
The effect of testosterone deprivation (ADT or hormone therapy) vary a lot among individuals. For some, it may get better with time, but I read (!) that more commonly, it gets worse. For me, the side effects were about the same during the 18 months that I was on hormone therapy. Then it takes quite a while to get back to 'normal' and some never get back to their old self. Age plays a role in all of this as well.
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"Hardly Cancer"FinishingGrace said:Good ideas...
I appreciate the ideas. He has 3 little dogs that he barely takes care of now. He doesn't have a drivers license or a car, so is dependent on others to go anywhere. When I say he doesn't have friends, I really mean he doesn't have a single friend.
He has about $700 a month to cover all expenses so you can imagine how limiting that is for him.
He has organized his garage and done some projects inside the house, but now he just sits around all day with nothing to do except watch the one channel his tv will pick up.
I welcome ideas and do wish he could do something for others. The focus on self is unhealthy and deepens the depression he struggles with.
Grace,
I am commenting only on what you said about his bordom and "only getting one channel."
While TV is far from fulfilling or healthy, it can break his extreme boredom. A window-mounted tv antenna can be bought for as little as around $25.
A DVD player can be purchased used at Salvation Army or Goodwill for about that amount -- something to let him watch old movies, on almost any old tv.
As I think I mentioned to you, 4 years ago I assisted an old friend in a situation similiar to your friends. All family was dead or out of state. I drove himm to nearly all of his appointments during his last year or so before he died in hospice three days after admission there.
He watched tv all day, too weak to walk. Without tv he most likely would have gone insane. Some channel or movie choices from the antenna or dvd might do a lot for him.
max
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Gets worse...Old Salt said:More about those hot flashes
The effect of testosterone deprivation (ADT or hormone therapy) vary a lot among individuals. For some, it may get better with time, but I read (!) that more commonly, it gets worse. For me, the side effects were about the same during the 18 months that I was on hormone therapy. Then it takes quite a while to get back to 'normal' and some never get back to their old self. Age plays a role in all of this as well.
This certainly my neighbors experience. This new drug seemed to help slightly but only slightly. So they doubled the dose at the appointment today. Will update on it's efficacy in the coming weeks.
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Volunteering"Hardly Cancer"
Grace,
I am commenting only on what you said about his bordom and "only getting one channel."
While TV is far from fulfilling or healthy, it can break his extreme boredom. A window-mounted tv antenna can be bought for as little as around $25.
A DVD player can be purchased used at Salvation Army or Goodwill for about that amount -- something to let him watch old movies, on almost any old tv.
As I think I mentioned to you, 4 years ago I assisted an old friend in a situation similiar to your friends. All family was dead or out of state. I drove himm to nearly all of his appointments during his last year or so before he died in hospice three days after admission there.
He watched tv all day, too weak to walk. Without tv he most likely would have gone insane. Some channel or movie choices from the antenna or dvd might do a lot for him.
max
Good points Max. He does have a dvd player but doesn't seem interested in watching movies. He does watch tv and you are right, he needs something. A couple of years ago I gave him a nice tv that was given to me.
I asked him today if he would be interested in volunteering somewhere or doing something to help others. He said he would love to do anything he could to help other people. There's a rehab center and assisted living home just a few miles away. I'm going to give him the number and see if they would allow him to come and play cards or checkers with some of the residents to help them pass the time. I think this would benefit him as much or more than them but I think they would welcome the help. He is still very strong physically.
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PSA
Down to 90 at todays visit. The Taxotere is quite effective.
I asked the oncologist about calcium and he told me he had never heard of there being an issue with calcium and prostate cancer patients. I didn't know what to say so I said nothing. I asked about radiation for the spots on the bone and he said that would only be done if there was pain. I asked about the new issue of incontinence that my neighbor is facing. He said he didn't know anything about that either and we should go see a urologist. Will work on getting that done tomorrow.
So. That was today's appointment.
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A great friend
Grace,
The lower PSA is in line with our previous exchanged comments. It also confirms the success of the treatment in holding the bandit at its tracks. Thinking of cure with this intervention is futile. Radiation that could do miracles is not recommended because of the vast spread of the cancer (one cannot radiate it all), however, it can be administered at some spots but such a field is decided when the cancer causes nasty effects/symptoms like pain. His doctor is reserving the RT intervention for that timing.
Mean while your friend will have to monitor the side effects from the therapy, where all markers must be periodically tested. The typical drugs prescribed by doctors to treat the symptoms in Chemo/ADT protocols are those that treat depressive disorders. This is in fact all related to the lack of androgens in circulation that deregulated several of our body systems. I never heard about Gabapentin but most probably this is common in chemo therapies. The traditional pill for hot flashes is Effexor (Venlafaxine) that treats chronic fatigue (another nasty symptom from ADT). According to the literature on Gabapentin, this drug has also side effects of its own some over exposing the ones already settled in, such as blurred vision, vertigo and high blood pressure.
The most traditional drug given to PCa patients on chemo is Wellbutrin but this is a similar drug to the above. I recall Dr. Myers comments on PCIR symposiums in regards to the use of estrogens to alleviate symptoms from ADT3 (total blockade) patients. In other words, decreased estrogens in circulation influence directly some of our brain functions like the depressive moods, etc. I wonder if doubling the gabapentin is the best solution. As a lay man, I would try exchanging this drug with something similar like the Effexor. But I insist that the estrogens test should be done. That also would help in judging a malfunctioning of the adrenal glands (an issue probably linked to the prednisone).
As a substitute to pills, Soy products are recommended by ADT patients to avoid hot flashes. Do these works? I do not know. Fortunately for me the side effects from ADT were numerous but mild. They all had their period of higher intensity along my 2 years of chemical castration and I noticed well when my body adapted to the lack normalizing the systems. In my case ED and fatigue were the worse. In the end period I experienced king of rheumatoid arthritis. I never took pills but changed my life style (earlier dinners and afternoon naps) and did some control on diets. Walking 5 to 8 Km daily may have been the best drug I took. At the end of ADT I was worried if I would recover 100% as commented by Old Salt, and, sincerely I do not know if even today 4.5 years out of castration all my systems recovered fully. Though, the typical effects/symptoms are gone. My latest case of CKD could have been a cause of ADT effects (malfunctioning Thyroid) or an indirect cause due to high blood pressure. I managed to get it under control with BD pills and a change in diets.
You are really a good friend of your neighbor. Your doings are supper and the reports are helping many more than what you may think. I thank you for your involvement in his behalf.
Best wishes for continuing success in the PCa control.
VGama
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HelpfulVascodaGama said:A great friend
Grace,
The lower PSA is in line with our previous exchanged comments. It also confirms the success of the treatment in holding the bandit at its tracks. Thinking of cure with this intervention is futile. Radiation that could do miracles is not recommended because of the vast spread of the cancer (one cannot radiate it all), however, it can be administered at some spots but such a field is decided when the cancer causes nasty effects/symptoms like pain. His doctor is reserving the RT intervention for that timing.
Mean while your friend will have to monitor the side effects from the therapy, where all markers must be periodically tested. The typical drugs prescribed by doctors to treat the symptoms in Chemo/ADT protocols are those that treat depressive disorders. This is in fact all related to the lack of androgens in circulation that deregulated several of our body systems. I never heard about Gabapentin but most probably this is common in chemo therapies. The traditional pill for hot flashes is Effexor (Venlafaxine) that treats chronic fatigue (another nasty symptom from ADT). According to the literature on Gabapentin, this drug has also side effects of its own some over exposing the ones already settled in, such as blurred vision, vertigo and high blood pressure.
The most traditional drug given to PCa patients on chemo is Wellbutrin but this is a similar drug to the above. I recall Dr. Myers comments on PCIR symposiums in regards to the use of estrogens to alleviate symptoms from ADT3 (total blockade) patients. In other words, decreased estrogens in circulation influence directly some of our brain functions like the depressive moods, etc. I wonder if doubling the gabapentin is the best solution. As a lay man, I would try exchanging this drug with something similar like the Effexor. But I insist that the estrogens test should be done. That also would help in judging a malfunctioning of the adrenal glands (an issue probably linked to the prednisone).
As a substitute to pills, Soy products are recommended by ADT patients to avoid hot flashes. Do these works? I do not know. Fortunately for me the side effects from ADT were numerous but mild. They all had their period of higher intensity along my 2 years of chemical castration and I noticed well when my body adapted to the lack normalizing the systems. In my case ED and fatigue were the worse. In the end period I experienced king of rheumatoid arthritis. I never took pills but changed my life style (earlier dinners and afternoon naps) and did some control on diets. Walking 5 to 8 Km daily may have been the best drug I took. At the end of ADT I was worried if I would recover 100% as commented by Old Salt, and, sincerely I do not know if even today 4.5 years out of castration all my systems recovered fully. Though, the typical effects/symptoms are gone. My latest case of CKD could have been a cause of ADT effects (malfunctioning Thyroid) or an indirect cause due to high blood pressure. I managed to get it under control with BD pills and a change in diets.
You are really a good friend of your neighbor. Your doings are supper and the reports are helping many more than what you may think. I thank you for your involvement in his behalf.
Best wishes for continuing success in the PCa control.
VGama
Thank you Vasco. I appreciate the information about other meds that may be more effective at dealing with the hot flashes. Fatique is certainly an issue for him. He is trying to evaluate (on a scale of 1-10) how much the Gabapentin has helped. He said it was at a 1 (very little help) with the hot flashes the first week. He is going to evaluate again after one week on the double dose. We will see if the increased dose helps. If not I will ask about the other meds you've mentioned here.
I wish that he would exercise and eat healthy. This is not something he is willing to do at this time. It is his choice.
Really appreciate your feedback. Thank you.
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Latest Update
Three weeks ago a different oncologist (not the doctor we normally see) told us his PSA was at 53. Last week his normal oncologist told us his PSA was 63. This week they told him that his PSA is 61.7.
So the numbers are not continuing to fall at the rate we hoped for. I know that coming from 606 to 61.7 is a vast improvement and I believe it shows the taxotere and the hormone therapy has worked to some degree. His PSA may never fall to undetectable levels because of the advanced nature of the disease.
I do have questions.
They are giving him a hormone injection every 3 months. He just received his second injection. They have not tested his testosterone levels and I've asked. Why wouldn't they test this level? How do we know if the hormone injection is worth the horrible side effects he faces if we don't know it is dropping the testosterone in his body or not?
For some reason the oncologist removed the oral prednisone tablet he has taken every day since starting the chemo. While on the predinisone my neighbor has experienced very few side effects from the chemo other than being extra tired. He's been almost fully functional until the last treatment without the prednisone. Without the prednisone he vomited for days, couldn't get out of bed, and was in terrible condition. There were no other changes that I am aware of. Why would the doctor tell us he didn't need the prednisone any longer? Is there something going on that he just isn't telling us? Even the nurses thought it was strange because they wanted to refill the prednisone and double checked with the doctor when I told them the doctor said my neighbor didn't need it anymore. Any insight appreciated.
He only has one chemo treatment left in this round. But his PSA is still so high, and when on prednisone he tolerates the chemo very well. Would it be adviseable for him to continue with additional chemo treatments to see if the PSA will drop further?
He has his first PET scan since starting treatment on the 11th. It should reveal much concerning the spread or recession of the cancer.
Thanks guys. So grateful to have your help and insight.
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SomeFinishingGrace said:Latest Update
Three weeks ago a different oncologist (not the doctor we normally see) told us his PSA was at 53. Last week his normal oncologist told us his PSA was 63. This week they told him that his PSA is 61.7.
So the numbers are not continuing to fall at the rate we hoped for. I know that coming from 606 to 61.7 is a vast improvement and I believe it shows the taxotere and the hormone therapy has worked to some degree. His PSA may never fall to undetectable levels because of the advanced nature of the disease.
I do have questions.
They are giving him a hormone injection every 3 months. He just received his second injection. They have not tested his testosterone levels and I've asked. Why wouldn't they test this level? How do we know if the hormone injection is worth the horrible side effects he faces if we don't know it is dropping the testosterone in his body or not?
For some reason the oncologist removed the oral prednisone tablet he has taken every day since starting the chemo. While on the predinisone my neighbor has experienced very few side effects from the chemo other than being extra tired. He's been almost fully functional until the last treatment without the prednisone. Without the prednisone he vomited for days, couldn't get out of bed, and was in terrible condition. There were no other changes that I am aware of. Why would the doctor tell us he didn't need the prednisone any longer? Is there something going on that he just isn't telling us? Even the nurses thought it was strange because they wanted to refill the prednisone and double checked with the doctor when I told them the doctor said my neighbor didn't need it anymore. Any insight appreciated.
He only has one chemo treatment left in this round. But his PSA is still so high, and when on prednisone he tolerates the chemo very well. Would it be adviseable for him to continue with additional chemo treatments to see if the PSA will drop further?
He has his first PET scan since starting treatment on the 11th. It should reveal much concerning the spread or recession of the cancer.
Thanks guys. So grateful to have your help and insight.
I can address only a small part of your question, Grace. I am not conversant in HT and the way it is "played." Vasco or one of the others can possibly address this.
His PSA drop from Taxotere is remarkable and a cause for thanksgiving. Why the oncologist ended Prednisone I have no idea. ASK HIM ! It is as simple as that. Jevtana and Zytiga are both later administered with Prednisone, so he will be back on it soon enough. Prednisone does cause agitation and irritability in other patients, but it sounds like such is not the case with your friend.
Prednisone is used for a variety of reasons with numerous chemo drugs. It boosts energy and appetite for one, reduces swelling and inflammation also. It can have an indirect effect on nausea, but is not a primary EMEND type drug.
Only the oncologist can determine if he is suitable for further Taxotere, but I would ASK that also. The friends I have followed on Taxotere were allowed to use it until it ceased to be effective, but is seems it is still quite effective in his case. This will happen: At some point the Taxotere will no longer help, and post-Taxane drugs are introduced. My friend Gary went from a PSA of over 1,000 to around 250 on Taxotere, so it has done much more for your friend than it does for some other men.
I am glad you updated us, I was wondering how things were going for him,
max
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Immune system in full swing
Most of the symptoms he started to experience are due to the sudden withdrawing of the prednisone. This drugs is tricky and should never be stopped but phased down along an adaptation period. The immune system is in full swing and affecting your friend.
The HT shot you refer may be Lupron (3 month). This leads to chemical castration therefore holding the little baggers that are dependent on testosterone. The other baggers that do not depend on T and that may be more aggressive in type, will continue its doubling, probably not producing much of the PSA serum. The oncologist should not stop the Lupron but add more blockades to avoid the bandit from advancing. This will be done once the chemo effect ends and refractory is declared. Typically they start Zytiga or Ketokonazole (much cheaper) that together with Lupron manage long additional periods of survival.
You do understand that cure may not be at reach of your friend.
All tests are important to ascertain the status, the effect and the efficacy of the treatment. These may be expensive and some doctors just avoid doing them when the case is very advanced. His oncologist is treating the situation (PSA for verifying any advancement of the case) not the problem (the efficacy of the treatment).
Best,
VG
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Back on prednisone
I was at the appointment when the oncologist stopped the prednisone. I did ask him why and he just said, "He doesn't need it anymore". I objected to it not being tapered down rather than stopped suddenly and he said the dosage was so low he could stop it with no problems.
Not true.
I was not at the blood work appointment this past Wednesday and a different oncologist put him back on the prednisone when he described the horrible side effects he's been having since it was removed. They also gave him a pretty strong antidepressant. He told me tonight that he was already feeling better and he attributes that to the prednisone.
He had a PET scan today, but they didn't do a full scan like they did the first time, only the torso. I just don't get it but that should show something of the state of the disease now. He's already feeling anxious about the appointment on Wednesday, as you can imagine.
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Good news...
Last day of chemo was Wednesday.
PSA down to 41.7. PET Scan shows the PCa has not spread to any sites beyond the bladder, pubic bone, femur and rib (all sites we knew about from the beginning). They did not shrink, but they did not get any larger and there are no new areas. The doctor was practically dancing around the room as he exclaimed how great everything has turned out.
Then he wouldn't answer any of my questions. He seems like a nice guy but just doesn't tolerate questions well. Of course, my neighbor doesn't really want to know anything unless it's good news so the more questions I ask, the more stressed he becomes. I finally just stopped talking.
If it were me I would have fired this guy after the first week and worked with someone who explains things throughly and answers my questions. The fact that he won't be explicit on any level makes me feel like he isn't telling us everything. It's driving me absolutely bonkers.
He 'hopes' the PSA will continue to drop even though there will be no more chemo. The Lupron shots every 3 months will continue and they start some sort of monthly infusion for the bone mets in September.
Totally in this for my neighbor, completely D.O.N.E. with this oncologist. Very happy for my neighbor that the treatment has stopped the PCa in it's tracks and praying this lasts for a long time before it starts back up.
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Congratulations
Grace,
I am very happy for you and your neighbor. I wish you live next to me too. You have been extraordinary.
The end results of your efforts are at sight; Lesser cancer and lesser side effects. The PSA may go down further as many cells will die in its life cycle that last about six months. I wonder what may be his nadir. The infusion for bone loss/mets may be Prolia or the cheaper Zoledronic acid. This newer drug will also cause side effects with the latter being more nasty than the former. Your neighbor may feel confusion at occasions. I would recommend him to get a starting DEXA scan to compare with the results after the treatment. Apart from finding any osteoporosis condition, one would know if the suffering from the side effects were worth it.
Best wishes for more improvements,
VG
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Thank you Vasco
I will find out about this new infusion this coming Wednesday. What it is and what are the side effects. Do you have a preference of Prolia or Zoledronic acid? Are there significant differences in effect or symptoms?
I'm noticing more and more confusion on his part along with some beligerance. He is refusing to take some of the meds the oncologist prescribed. He is picking and choosing which meds to take on which day.
I will also ask about the DEXA scan. Thanks so much!
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Zometa has much more years in action than Prolia
Sincerely, I think that both drugs do exactly the same job and got equal results in terms of outcomes. Such results were verified in a clinical trial which were reported at several sites. The pro-Prolia writers comment that Prolia is better but it is not true. The big differences in the drugs are that Prolia is 3% more efficient in delaying the process in broken bone (due to cancer activity) and the Zoledronic acid is better in terms of avoiding accidents with osteonecrosis of the jaw (a high risk when dental care is required). Prolia requires taking a calcium and vitamin D supplement as necessary to treat and/or prevent low blood calcium levels. Zoledronic acid requires the patient to be well hydrated during treatment to protect the kidneys.
In regards to treatment costs Prolia is more expensive but when adding the costs of supplements and the number of infusions (time duration to get equal results) both treatments have similar end costs. A study on the costs has been done by a consultant to help the UK NHS decision to include Prolia in its system, which found it to be more expensive. The study was sponsored by Amgen Inc. USA, the owner of Prolia;
http://www.crd.york.ac.uk/CRDWeb/ShowRecord.asp?ID=22011000463
The side effects differ as the two drugs use different path ways for metabolism. Please refer to the following links;
https://nos.org.uk/about-osteoporosis/treating-osteoporosis/osteoporosis-drugs/denosumab-prolia/
Best,
VG
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Thank you Vasco
Very helpful. Will look into it and find out which one he will have.
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Final Update
There has been an unfortunate turn of events and I will no longer be involved in my neighbors treatment or overseeing his meds.
He recently asked me to make some changes in his medications, in order that he might have greater access to opiates previously prescribed, without his doctor knowing. Obviously, I refused. I cannot and will not make any changes to any medications, much less high powered pain meds that if mixed with the anti-depressants that have been prescribed, could literally kill him.
Early today he visited the oncologists office without my knowledge, was disruptive with wildly inappropriate emotional behavior, and made claims against me and my character regarding the management of his meds and/or withholding of medications. Thankfully, I have kept in close contact with their triage nurse as well as the oncologist since he started asking me to switch up his meds, so they know the truth. They informed me of what happened today and my decision was painfully clear.
I am deeply sorry for what he is going through, but I am no longer able to assist him if he is going to lie about me or spread falsehoods about how I have managed medications.
However, I am doing great and am confident that I did my very best to help someone who needed it, and it was the right thing to do at the time. I have absolute peace about stepping away at this point from any type of medical assistance. I wish him the best and will continue to try and be a good neighbor to him. My plan is to continue to visit with him occasionally, take food when possible, and offer the occasional ride when I'm available. If you pray, please pray for him.
I did want to take a moment to tell each of you how honored I have been to be a part of this community, even if for a short time. The courage, wisdom, and the compassion shown here, along with rigourous and healthy debate has been a blessing to me in many ways. Each of you deserves a medal for how you help and encourage each other. This group is a fine example of everything a man should be.
My very best to all of you! Thank you for your support of my efforts. God bless!
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You Did A Wonderful Job
Grace, I've been following your neighbor's journey and am very disappointed with this development. You did everything and more and should certainly be at peace with all you've done for him. A positive take-away from all this is that you now know more about PCa than most Americans and will definitely be in a better position to help others in the future. You inspire us all and I hope you'll continue to contribute to this forum. Best/Gene
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You did well to your neighbor and to us all
I pair my opinion with Gene's above. Your neighbor knows and is very able of continuing his treatment as recommended by his physicians. You doing well in restricting the help you provide to matters other than the treatment. His behavior was incorrect and probably can get worse.
Lupron effects may be behind such attitude. Some guys on HT become excessively aggressive occasionally, even with suicidal behaviorism and one cannot change it. I once experienced such aggressive behavior when shopping. It was momentarily but surprised me. I managed to restrain from going further because I knew that at that moment I was experiencing a side effect of HT. I mentally managed to counter act controlling the effect. A third person intervention could easily trigger the worse.
I hope his behavior improves and that one day he realizes how much he owes you for the help you have provided.
Thanks for the help that your posts have provided to us all in this boat.
VG
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