Gleason 9 Consult Questions to Ask?

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Comments

  • adrianpoll
    adrianpoll Member Posts: 2
    Gleason 9 - Three years after diagnosis

     

    Elsie, I do hope you and your husband are doing well. I am writing because at the beginning of my cancer, my symptoms and situation were very much like your husband’s – Gleason 9 at the time it was first diagnosed by TURBT/biopsy. That was back in May 2012 so I thought it might be helpful if I shared my 3-year story and some of the key things I have learned.

    First is the truism that each cancer is unique and different (despite the similarities). Right on!

    My first year, 2012, felt like a turmoil of adjusting and learning, it felt like this cancer had taken over my life. My urologist put me on Firmagon as soon as the aggressive cancer was diagnosed. This was to “hold the fort” while we considered what to do next. I got the Walsh book and read all about my situation (I am a scientist and an information freak. You can’t imagine all the stuff I was studying on the internet!). I traveled 2 hours with my sons to Johns Hopkins for a consultation with Dr. Han. He was very practical and to-the-point: first he said that we should assume that it was endemic, and second he said that since it had invaded my bladder, surgery wasn’t a good idea so I should look for a radiation oncologist. On return I did a thorough internet search of all the local facilities and the biographies of all their doctors, picked my man and got lined up for a good solid course of radiation treatment to the prostate and first-tier lymph nodes at the end of 2012. Meanwhile, in  2012 I also had two great overseas trips.

    After that, 2013 was like a rest cure! I got on with my life and we watched the PSA which went down and stayed down. But just in case, I signed up with a doctor at my state’s cancer institute (a top-notch comprehensive care place) that my radiation oncologist had told me about. This research clinical oncologist spent a full hour talking through about my case and answering all my technical questions, which much impressed me – I might need him one day.

    Sure enough, in the spring of 2014 the PSA started coming up again. The doctors had been right to warn me - it was a very aggressive cancer. Bone scan showed a solitary metastasis in the knee (rather unusual). We all wondered what to do about this for a few months. Fortunately, by now I was already participating in a clinical trial at the cancer institute, so I was getting bone scans rather frequently. The most recent of these showed the cancer progressing down my tibia at a rate that sure got my attention. My urologist quickly took me off the Firmagon and put me on Lupron instead, and I am just now starting a course of radiation on the knee and tibia. Meanwhile I am still working, and in a few days am traveling to England, on a business project and also to visit with family members there.

    I am so lucky to have such a really great team of doctors, accumulated in these three years, and all helping with this case in their different ways – urologist, radiation oncologist, clinical oncologist, general physician and psychiatrist. They usually agree with one another but by no means 100% of the time. This is not a problem, it’s only natural and it gives me an opportunity to try to figure out why and what to do about it. With a team like this, one or other of them will usually give me the clue I need to clear my mind at any given time.  I feel like I’ve been a good patient who has built good working relationships with them all as well as with the numerous technicians, nurses and other staff I’ve run across. I read the magazines in the clinics, too, and find lots of good ideas there about the attitudes that work and the examples we can follow.

    The other way I’m lucky, as you may have figured, is that since I’m still working (at 71) I am able to afford the top level of insurance through my company’s benefit package. If you are able to get  and/or keep this kind of good insurance, hang on to it for dear life!    

    All the best to you all in your many different journeys.

     

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Congratulations on the negative biopsy

    Elsie

    I am glad for the news about the outcome of bladder's negative biopsy. The timing close was not the best but you managed and that is good. Probably he had to be catherized because they took tissue samples from the sphinter area (closer to the prostate). I hope your husband manages to control urination.

    The above story of Adrian is a good example to follow. Being active, educated, "moving" coordenately and looking for the best along one's journey.

    Best wishes in his next consultation.

    VG

     

  • Elsie189
    Elsie189 Member Posts: 13

    Gleason 9 - Three years after diagnosis

     

    Elsie, I do hope you and your husband are doing well. I am writing because at the beginning of my cancer, my symptoms and situation were very much like your husband’s – Gleason 9 at the time it was first diagnosed by TURBT/biopsy. That was back in May 2012 so I thought it might be helpful if I shared my 3-year story and some of the key things I have learned.

    First is the truism that each cancer is unique and different (despite the similarities). Right on!

    My first year, 2012, felt like a turmoil of adjusting and learning, it felt like this cancer had taken over my life. My urologist put me on Firmagon as soon as the aggressive cancer was diagnosed. This was to “hold the fort” while we considered what to do next. I got the Walsh book and read all about my situation (I am a scientist and an information freak. You can’t imagine all the stuff I was studying on the internet!). I traveled 2 hours with my sons to Johns Hopkins for a consultation with Dr. Han. He was very practical and to-the-point: first he said that we should assume that it was endemic, and second he said that since it had invaded my bladder, surgery wasn’t a good idea so I should look for a radiation oncologist. On return I did a thorough internet search of all the local facilities and the biographies of all their doctors, picked my man and got lined up for a good solid course of radiation treatment to the prostate and first-tier lymph nodes at the end of 2012. Meanwhile, in  2012 I also had two great overseas trips.

    After that, 2013 was like a rest cure! I got on with my life and we watched the PSA which went down and stayed down. But just in case, I signed up with a doctor at my state’s cancer institute (a top-notch comprehensive care place) that my radiation oncologist had told me about. This research clinical oncologist spent a full hour talking through about my case and answering all my technical questions, which much impressed me – I might need him one day.

    Sure enough, in the spring of 2014 the PSA started coming up again. The doctors had been right to warn me - it was a very aggressive cancer. Bone scan showed a solitary metastasis in the knee (rather unusual). We all wondered what to do about this for a few months. Fortunately, by now I was already participating in a clinical trial at the cancer institute, so I was getting bone scans rather frequently. The most recent of these showed the cancer progressing down my tibia at a rate that sure got my attention. My urologist quickly took me off the Firmagon and put me on Lupron instead, and I am just now starting a course of radiation on the knee and tibia. Meanwhile I am still working, and in a few days am traveling to England, on a business project and also to visit with family members there.

    I am so lucky to have such a really great team of doctors, accumulated in these three years, and all helping with this case in their different ways – urologist, radiation oncologist, clinical oncologist, general physician and psychiatrist. They usually agree with one another but by no means 100% of the time. This is not a problem, it’s only natural and it gives me an opportunity to try to figure out why and what to do about it. With a team like this, one or other of them will usually give me the clue I need to clear my mind at any given time.  I feel like I’ve been a good patient who has built good working relationships with them all as well as with the numerous technicians, nurses and other staff I’ve run across. I read the magazines in the clinics, too, and find lots of good ideas there about the attitudes that work and the examples we can follow.

    The other way I’m lucky, as you may have figured, is that since I’m still working (at 71) I am able to afford the top level of insurance through my company’s benefit package. If you are able to get  and/or keep this kind of good insurance, hang on to it for dear life!    

    All the best to you all in your many different journeys.

     

    Updates so far

    I'm so sorry to hear about your husband's turn for the worse, Shirley. Thank you for your thoughtful, helpful response during what must be a horrible time. I wish the both of you a good outcome despite this turn for the worse. Thanks also to Adrianpoll for your own detailed account of your similar case. I'm so sorry you've got bone involvement and wish you the very best care to keep your cancer in check. This board has been one of our most helpful resources. 

    Where we are now:

    --We head to Dana Farber tomorrow to get a second opinion about my husband's case.

    --He took the Casodex for a month then moved on to Zolodex for three months then will get six-month Lupron. My husband is tolerating the Zolodex reasonably well. He's more tired than usual from it.

    --He takes Flomax due to urinary urgency. It works reasonably well, but he now needs to scope out all the bathrooms wherever we go. The guy was a camel before this!

    --He will have 8-10 weeks of radiation starting in about three weeks. Some markers will be implanted ahead of that to target the radiation. 

    --He had a bladder biopsy the day before Thanksgiving, which showed no cancer. However, one of the ureters was a bit twisted, so the urologist couldn't get up there for a complete look. My husband will have an ultrasound next week so they can get a better look. The bladder biopsy, btw, lasted over two hours--I forget the name of the procedure but it wasn't the snip, snip type like the initial prostate biopsy. My husband had to be catherized for five days at home, something that wasn't mentioned ahead of the procedure! We've now had a discussion about how poorly prepared we were for this surgery--not even a handout. It completely derailed our Thanksgiving and delayed a big family trip in December by over a week. The office is poorly managed, but the doctors have very good reputations all the same. We don't have a lot of options in our area; everybody's in the same group. We're not taking anything for granted going forward. For what it's worth, they're part of the Mass General orbit and follow those protocols.

    --My husband will have the overdue colonoscopy in three days. (He had an appendectomy and blockage surgery almost exactly a year ago--no cancer seen. All the same, I do have a worry because of the timing that the two events might be related.)

    So after a three-week respite visiting family, we're back on the prostate roller coaster. The aforementioned plans may change depending on what Dana Farber (Dr. Kaplan) advises. We are far more informed now than we were just six weeks ago when I first posted. 

    Thank you all again for sharing your stories. 

     

     

  • Elsie189
    Elsie189 Member Posts: 13
    Dana Farber Visit

    My husband and I met today with a prostate cancer expert at Dana Farber to get a second opinion even though my husband's hormone treatment in our local area is already underway. His radiation is to begin in a few weeks. The takeaways from today:

    --The doctor said my husband's proposed treatments (not at Dana Farber) of two-years of hormone treatment, currently Zoladex for three months followed by six-month segments of Lupron, plus radiation, is standard. Dana Farber has some experimental studies underway, but nothing new yet that has proven to be better than the current standard.

    --She did say the latest research shows that 18 months of hormone treatment plus radiation seem to have similar results to three-year hormone treatment.

    --The doctor said Dana Farber pairs Casodex with Lupron throughout the treatment, so we will ask my husband's urologist to adopt that. My husband has had almost two months of Casodex, but I don't think it was to be continued with the Zoladex and future Lupron.

    --The doctor recommended that the Lupron be given in three-month shots, not six months--sorry, not sure why.

    --I asked whether my husband's presenting with low PSA but sudden blood in urine and urinary irregularities and his eventual  high Gleason 9 had any significance. The doctor said that was a current million-dollar question in research. There is some early evidence that some high Gleason scorers with low-PSA producing tumors do not have as much success on hormone treatment as men who get diagnosed via high PSA levels. This was not great news since my husband falls into the low-PSA/high Gleason (9) camp. The doctor said he will need to be vigilant with bone scans, CT scans annually. Unfortunately, due to his pacemaker, my husband can't have an MRI. So that's not a great situation to be in either. I found some highly technical research on this as soon as we got home, but I can't process it right now because I have a dinner date with the patient!

    --The doctor highly recommended the Prostate Cancer Foundation as a source for solid, up-to-date information. 

    There was a lot to absorb. Tomorrow my husband begins his colonoscopy prep for his Wednesday procedure. Let's hope there's nothing significant there so I don't have to post on a colon cancer board as well! He'll have tracking seeds implanted in a couple weeks ahead of radiation treaments as well as a bladder ultrasound for images the urologist couldn't get during the big biadder biopsy in November. So, it's always something! 

    Thanks, as always, for the incredibly helpful commentors on this board. I wish none of us had to be here!

     

     

  • adrianpoll
    adrianpoll Member Posts: 2
    Elsie189 said:

    Dana Farber Visit

    My husband and I met today with a prostate cancer expert at Dana Farber to get a second opinion even though my husband's hormone treatment in our local area is already underway. His radiation is to begin in a few weeks. The takeaways from today:

    --The doctor said my husband's proposed treatments (not at Dana Farber) of two-years of hormone treatment, currently Zoladex for three months followed by six-month segments of Lupron, plus radiation, is standard. Dana Farber has some experimental studies underway, but nothing new yet that has proven to be better than the current standard.

    --She did say the latest research shows that 18 months of hormone treatment plus radiation seem to have similar results to three-year hormone treatment.

    --The doctor said Dana Farber pairs Casodex with Lupron throughout the treatment, so we will ask my husband's urologist to adopt that. My husband has had almost two months of Casodex, but I don't think it was to be continued with the Zoladex and future Lupron.

    --The doctor recommended that the Lupron be given in three-month shots, not six months--sorry, not sure why.

    --I asked whether my husband's presenting with low PSA but sudden blood in urine and urinary irregularities and his eventual  high Gleason 9 had any significance. The doctor said that was a current million-dollar question in research. There is some early evidence that some high Gleason scorers with low-PSA producing tumors do not have as much success on hormone treatment as men who get diagnosed via high PSA levels. This was not great news since my husband falls into the low-PSA/high Gleason (9) camp. The doctor said he will need to be vigilant with bone scans, CT scans annually. Unfortunately, due to his pacemaker, my husband can't have an MRI. So that's not a great situation to be in either. I found some highly technical research on this as soon as we got home, but I can't process it right now because I have a dinner date with the patient!

    --The doctor highly recommended the Prostate Cancer Foundation as a source for solid, up-to-date information. 

    There was a lot to absorb. Tomorrow my husband begins his colonoscopy prep for his Wednesday procedure. Let's hope there's nothing significant there so I don't have to post on a colon cancer board as well! He'll have tracking seeds implanted in a couple weeks ahead of radiation treaments as well as a bladder ultrasound for images the urologist couldn't get during the big biadder biopsy in November. So, it's always something! 

    Thanks, as always, for the incredibly helpful commentors on this board. I wish none of us had to be here!

     

     

    Dana Farber Visit

    All the best for your husband's radiation treatment, Elsie! Mine certainly had a big positive effect, and I had it in conjunction with hormonal therapy just like him. Those little gold seeds make you feel quite special Smile and the treatment itself is not too unpleasant, you just have to lie still. Looking back at it I would certainly not have wanted to have been on hormonal therapy alone. The way it comes down to me, radiation has the effect of destroying the cancer cells (by upsetting them during their critical process of division and multiplication) whereas the hormonal therapy only makes life harder for them. A long time after my radiation treatment was done, I asked my R.O. what the prostate would actually look like at that time and he said, basically scar tissue.

    The only side effect I had from radiation to my prostate, that I was not prepared for, was rectal bleeding, starting a full year after the RT was finished. Apparently that is not uncommon. After limited success treating it with hydrocortisone suppositories, I happened to be visiting my enterologist for routine colonoscopy and he prescribed Canasa - a much more expensive suppository, but it cleared it up impressively quickly.

    I can absolutely relate to the annoyance and misery caused by frequency and urgency from blocked urinary passages. It seems like the whole nervous system is messed up, thrown out of whack in that functional area. I sure remember hunting anxiously for the men's rooms in the department stores and once upon a time, in the parking lot (after dark, fortunately) . . . well I'll leave that one to your imagination! That was early on, six months before the start of my RT - (different from your man's sequence, and nothing right or wrong about that, more than one path through the forest). In my case, my urologist worked a miracle when he did his biopsy (using the famous TURBT procedure) - he managed to remove just the right amount of tissue in the right places, bringing my urinary function to where  although not totally normal, I'm not bothered by it any more. Great surgery, getting it just right like that, I owe that man my life. I am wondering whether in your husband's case, the radiation treatment might shrink the prostate and that might take care of his urgency problems. That would be an excellent outcome, I do hope it may work out like that.

    All the best again,

    Adrian

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    A million-dollar question

    Elsie

    Thanks for the report on the consultation. I believe you got also answers on the other worrying issues so that you and your husband got the comfort and peace of mind so deserved. I wonder; ……..was it a dancing dinner?

    A note on the combo treatment (HT + RT) is that through trials it has been shown that the combo provided 35% (higher) improvement in the outcomes against a radiation treatment done solo. This improvement seems to be more associated with the initial length of the neoadjuvant hormonal portion (HT before starting radiation), than the adjuvant length of HT. A neoadjuvant period of two to three months has shown better results.

    The hormonal manipulations before RT make cells to be more receptive to the radiation “attack” (which is the one providing the killing). The adjuvant period in HT provides a continuous toxic environment for the “dizzy” prostatic cells, prohibiting these from an easy recovery (repair of the DNA). This seems to be the reason why one should not take beneficial antioxidants or supplements during and post RT period to maintain the toxicity.
    The length of adjuvant HT is controversial, but most of the physicians agree that two years is too long and unnecessary. My lay opinion
    is that one year is enough if we consider the period of cell’s life cycle. In fact your husband can choose to stop earlier (after consulting his doctor), if he feels it difficult to withstand the hormonal side effects. Have a look at this link;

    http://www.pcf.org/site/c.leJRIROrEpH/b.9071929/k.D61A/PCF_researchers_discover_molecular_

    crosstalk_that_prostate_cancer_cells_use_to_survive_radiation_therapy_plan_steps_to_halt_that_

    8220conversation8221.htm

    The final goal is “cure” and we will confirm it when the PSA becomes stable. This is verified through tests done after the end of the effect of the hormonal treatment, which starts from about three months added to the period in HT. This means that the “masked” PSA during the long period under treatment cannot be used as a final judgement but it will be used to verify the progress.
    In any case, it will be also necessary to check the effect of the LHRH agonist (Zoladex, Lupron, etc), which can only be done via Testosterone tests to confirm castration. I hope your husband gets one done NOW before taking the shot, and it continues with 6 month periodicals along the treatment.

    Regarding the continuous blockade with Casodex plus Lupron, (single or double), it pertains to the experience of each oncologist. Some guys prefer to maintain Gleason 9 patients under constant double or triple blockade and some prefer mono with a LHRH agonist alone. It is not proved yet which choice is better. However, in the double blockade, the status of “castrate resistant” must be identified the soonest because cancer is known to feed on the antiandrogen Casodex (not on Lupron as commented by Shirley40 above), and this should be withdrawn at first sign. When the PSA rises in a low Testosterone environment it means that the cancer becomes “castrate resistant“. The cause is usually attributed to AR mutations. You can research details in the net if interested;
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2699836/

    Gleason pattern 5 is for poorly differentiated type of cells that have lost many particulars of normal cells. They lost the ability of producing normal quantities of PSA serum and they have a faster life cycle. This makes them prune to respond faster to a radiation treatment, and this makes sense in trying to “attack” cancer, in this cohort of patients, aggressively from all fronts (combination therapies that may include chemo in the mixture), from the beginning. Though we are different and each cancer is unique, what works in some may not do so well in others. A newer DNA test provides better clues for one to make decisions on the treatment and on the times of its efficacy;

    http://www.pcf.org/site/c.leJRIROrEpH/b.9204781/k.6E08/DNA_Blood_Test_Might_Identify_

    Status_of_Prostate_Cancer.htm

    Gleason 9 patients should be careful regarding osteoporosis. PCa loves weak bone. Many oncologists include in their protocol bisphosphonates, should the patient have existing critical osteopenia.

    Fingers crossed for the results from the colonoscopy.

     

    Best wishes,

     

    VGama

    A Note to Adrian;

    Your posts are positive and inspiring to all of us. Welcome to the forum. Thanks for sharing your experience.

     

  • Elsie189
    Elsie189 Member Posts: 13

    A million-dollar question

    Elsie

    Thanks for the report on the consultation. I believe you got also answers on the other worrying issues so that you and your husband got the comfort and peace of mind so deserved. I wonder; ……..was it a dancing dinner?

    A note on the combo treatment (HT + RT) is that through trials it has been shown that the combo provided 35% (higher) improvement in the outcomes against a radiation treatment done solo. This improvement seems to be more associated with the initial length of the neoadjuvant hormonal portion (HT before starting radiation), than the adjuvant length of HT. A neoadjuvant period of two to three months has shown better results.

    The hormonal manipulations before RT make cells to be more receptive to the radiation “attack” (which is the one providing the killing). The adjuvant period in HT provides a continuous toxic environment for the “dizzy” prostatic cells, prohibiting these from an easy recovery (repair of the DNA). This seems to be the reason why one should not take beneficial antioxidants or supplements during and post RT period to maintain the toxicity.
    The length of adjuvant HT is controversial, but most of the physicians agree that two years is too long and unnecessary. My lay opinion
    is that one year is enough if we consider the period of cell’s life cycle. In fact your husband can choose to stop earlier (after consulting his doctor), if he feels it difficult to withstand the hormonal side effects. Have a look at this link;

    http://www.pcf.org/site/c.leJRIROrEpH/b.9071929/k.D61A/PCF_researchers_discover_molecular_

    crosstalk_that_prostate_cancer_cells_use_to_survive_radiation_therapy_plan_steps_to_halt_that_

    8220conversation8221.htm

    The final goal is “cure” and we will confirm it when the PSA becomes stable. This is verified through tests done after the end of the effect of the hormonal treatment, which starts from about three months added to the period in HT. This means that the “masked” PSA during the long period under treatment cannot be used as a final judgement but it will be used to verify the progress.
    In any case, it will be also necessary to check the effect of the LHRH agonist (Zoladex, Lupron, etc), which can only be done via Testosterone tests to confirm castration. I hope your husband gets one done NOW before taking the shot, and it continues with 6 month periodicals along the treatment.

    Regarding the continuous blockade with Casodex plus Lupron, (single or double), it pertains to the experience of each oncologist. Some guys prefer to maintain Gleason 9 patients under constant double or triple blockade and some prefer mono with a LHRH agonist alone. It is not proved yet which choice is better. However, in the double blockade, the status of “castrate resistant” must be identified the soonest because cancer is known to feed on the antiandrogen Casodex (not on Lupron as commented by Shirley40 above), and this should be withdrawn at first sign. When the PSA rises in a low Testosterone environment it means that the cancer becomes “castrate resistant“. The cause is usually attributed to AR mutations. You can research details in the net if interested;
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2699836/

    Gleason pattern 5 is for poorly differentiated type of cells that have lost many particulars of normal cells. They lost the ability of producing normal quantities of PSA serum and they have a faster life cycle. This makes them prune to respond faster to a radiation treatment, and this makes sense in trying to “attack” cancer, in this cohort of patients, aggressively from all fronts (combination therapies that may include chemo in the mixture), from the beginning. Though we are different and each cancer is unique, what works in some may not do so well in others. A newer DNA test provides better clues for one to make decisions on the treatment and on the times of its efficacy;

    http://www.pcf.org/site/c.leJRIROrEpH/b.9204781/k.6E08/DNA_Blood_Test_Might_Identify_

    Status_of_Prostate_Cancer.htm

    Gleason 9 patients should be careful regarding osteoporosis. PCa loves weak bone. Many oncologists include in their protocol bisphosphonates, should the patient have existing critical osteopenia.

    Fingers crossed for the results from the colonoscopy.

     

    Best wishes,

     

    VGama

    A Note to Adrian;

    Your posts are positive and inspiring to all of us. Welcome to the forum. Thanks for sharing your experience.

     

    Thank you Adrian and Vasco

    I'm blown away by both your detailed responses to my posting about the Dana Farber visit. I'll need some time to absorb all the information, especially yours VdeG because I want to read up on all the links especially the Casodex info, which I don't totally understand. 

    I'll see if I can work on my man to do those testosterone measurements though he's already on the hormone treatment. He had so many procedures and appointments, he didn't get around to that or the bone density scan. Onward with many thanks, Adrian and V. 

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Elsie189 said:

    Thank you Adrian and Vasco

    I'm blown away by both your detailed responses to my posting about the Dana Farber visit. I'll need some time to absorb all the information, especially yours VdeG because I want to read up on all the links especially the Casodex info, which I don't totally understand. 

    I'll see if I can work on my man to do those testosterone measurements though he's already on the hormone treatment. He had so many procedures and appointments, he didn't get around to that or the bone density scan. Onward with many thanks, Adrian and V. 

    Where is your man? He should be more involved in his care

    Elsie

    I am sorry if by any means my post created any confusion in regards to the Casodex. I did not want to be too technical but I think it good for you to understand details of the treatment. By knowing such and the function of the drugs, you will become less anxious. I would suggest your man to get involved in the matter and also subscribe to this or other PCa forum. He will like to talk and discuss with others in the same boat.

    In fact hormonal treatments are simply done with the purposes of blocking all paths of circulating androgens (testosterone in males) so that these do not reach neither are absorbed by the cancerous cells, which feed and survive on the stuff. These drugs do not address directly the cancer but it work well in a palliative way, during long periods of time.
    Traditionally, the androgen deprivation therapy – ADT (HT) is done by turning down (blocking) the factory of testosterone (the testes) using a LHRH agonist (ex; Lupron). This drug causes castration (low levels of T circulating in the body). A second blockade is done with an antiandrogen (ex; Casodex). This works at the cells’ receptors, blocking the androgen receptors (AR) therefore avoiding these from “absorbing” circulating androgens. Still other blockades are performed but they are not typically done at the initial stage of the treatment. They are used later (as second-line HT) when the traditional failed.

    Zoladex and Lupron work at the pituitary causing in some guys blurred vision and recognition impairment. The castration status leads to menopause like symptoms being fatigue and depression the worse. But it also may cause fast or irregular heartbeat, which is worrisome in guys with heart problems.

    Casodex stuck in the cell’s receptors. It manages to do this because it is made of a similar bio-structure as the real androgen. In other words, it mimics a real androgen “faking” the cell that will try to absorb it. This action on cell’s AR is thought to be the reason that provides a better stimulus during radiation.
    Casodex manages to act like that for very long periods in the treatment; however, at some time in some guys, these receptors mutate and start feeding on the Casodex itself, which must be withdrawn.

    The worse side effects from Casodex are breathless symptoms, breast increases and tenderness, and loss of sex drive. There is no particular worry about taking Casodex. The castrate resistance or refractory status typically occurs after many months into the treatment. One must be vigilant with the periodical blood tests and at the first notice should think in trying to stop taking the antiandrogen. The reaction is instantaneous. This is a phenomenon named Anti-Androgen Withdrawal Response (AAWR). There are many links in the net providing detailed information on the matter.

    Here are some you may be interested in reading;
    http://prostate-cancer.org/aawr-the-anti-androgen-withdrawal-response/

    https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&sqi=2&ved=0CDw
    QFjAD&url=https%3A%2F%2Fwww.urmc.rochester.edu%2Fgeorge-whipple-lab%2Fdocume

    nts%2F23-JCB-04-Miyamoto.pdf&ei=GBmtVNu3GoHbUviRhKgJ&usg=AFQjCNHs5xv8QZx5MFWYj66RP
    vekp
    HrcmA&bvm=bv.83134100,d.d24&cad=rjt

    About the side effects;
    http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Hormon

    altherapies/Individualhormonaltherapies/Bicalutamide.aspx

    http://www.medicinenet.com/leuprolide-injection/page2.htm

     

    The testosterone test should be done before the Zoladex shot and controlled thereafter with periodicals like the PSA. Dexa scan can be done at anytime.

    You are wonderful to care so much for him. Kiss

    Sincerely,

    VG  Embarassed

     

  • Elsie189
    Elsie189 Member Posts: 13

    Where is your man? He should be more involved in his care

    Elsie

    I am sorry if by any means my post created any confusion in regards to the Casodex. I did not want to be too technical but I think it good for you to understand details of the treatment. By knowing such and the function of the drugs, you will become less anxious. I would suggest your man to get involved in the matter and also subscribe to this or other PCa forum. He will like to talk and discuss with others in the same boat.

    In fact hormonal treatments are simply done with the purposes of blocking all paths of circulating androgens (testosterone in males) so that these do not reach neither are absorbed by the cancerous cells, which feed and survive on the stuff. These drugs do not address directly the cancer but it work well in a palliative way, during long periods of time.
    Traditionally, the androgen deprivation therapy – ADT (HT) is done by turning down (blocking) the factory of testosterone (the testes) using a LHRH agonist (ex; Lupron). This drug causes castration (low levels of T circulating in the body). A second blockade is done with an antiandrogen (ex; Casodex). This works at the cells’ receptors, blocking the androgen receptors (AR) therefore avoiding these from “absorbing” circulating androgens. Still other blockades are performed but they are not typically done at the initial stage of the treatment. They are used later (as second-line HT) when the traditional failed.

    Zoladex and Lupron work at the pituitary causing in some guys blurred vision and recognition impairment. The castration status leads to menopause like symptoms being fatigue and depression the worse. But it also may cause fast or irregular heartbeat, which is worrisome in guys with heart problems.

    Casodex stuck in the cell’s receptors. It manages to do this because it is made of a similar bio-structure as the real androgen. In other words, it mimics a real androgen “faking” the cell that will try to absorb it. This action on cell’s AR is thought to be the reason that provides a better stimulus during radiation.
    Casodex manages to act like that for very long periods in the treatment; however, at some time in some guys, these receptors mutate and start feeding on the Casodex itself, which must be withdrawn.

    The worse side effects from Casodex are breathless symptoms, breast increases and tenderness, and loss of sex drive. There is no particular worry about taking Casodex. The castrate resistance or refractory status typically occurs after many months into the treatment. One must be vigilant with the periodical blood tests and at the first notice should think in trying to stop taking the antiandrogen. The reaction is instantaneous. This is a phenomenon named Anti-Androgen Withdrawal Response (AAWR). There are many links in the net providing detailed information on the matter.

    Here are some you may be interested in reading;
    http://prostate-cancer.org/aawr-the-anti-androgen-withdrawal-response/

    https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&sqi=2&ved=0CDw
    QFjAD&url=https%3A%2F%2Fwww.urmc.rochester.edu%2Fgeorge-whipple-lab%2Fdocume

    nts%2F23-JCB-04-Miyamoto.pdf&ei=GBmtVNu3GoHbUviRhKgJ&usg=AFQjCNHs5xv8QZx5MFWYj66RP
    vekp
    HrcmA&bvm=bv.83134100,d.d24&cad=rjt

    About the side effects;
    http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Hormon

    altherapies/Individualhormonaltherapies/Bicalutamide.aspx

    http://www.medicinenet.com/leuprolide-injection/page2.htm

     

    The testosterone test should be done before the Zoladex shot and controlled thereafter with periodicals like the PSA. Dexa scan can be done at anytime.

    You are wonderful to care so much for him. Kiss

    Sincerely,

    VG  Embarassed

     

    You have the wrong impression totally

    Dear Vasco.

    I wonder if you would mind revising your last post, at least the parts about my husband not being more involved in his care. You know nothing about that. Nothing. We are a team, and I took charge of posting on this board with my own questions. He has done massive amounts of research elsewhere. Our printer is cranking out his research all day long. I am quite insulted by your comments, especially since I've trusted your information so much. Now I wouldn't dream of suggesting that he take a look at this site. 

    We have been married for decades and tag team each other all the time. That is why we are still married. He has done triple the amount of research I have done while getting tested, examined, operated on, and much more. Your posting is inappropriate and upsetting. 

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    Elsie189 said:

    You have the wrong impression totally

    Dear Vasco.

    I wonder if you would mind revising your last post, at least the parts about my husband not being more involved in his care. You know nothing about that. Nothing. We are a team, and I took charge of posting on this board with my own questions. He has done massive amounts of research elsewhere. Our printer is cranking out his research all day long. I am quite insulted by your comments, especially since I've trusted your information so much. Now I wouldn't dream of suggesting that he take a look at this site. 

    We have been married for decades and tag team each other all the time. That is why we are still married. He has done triple the amount of research I have done while getting tested, examined, operated on, and much more. Your posting is inappropriate and upsetting. 

    Dear Elsie,I understand that

    Dear Elsie,

    I understand that you are upset due to the challenge that you and your husband are going through, however it is my opinion that you have overreacted to VG's post. I feel that VG has gone beyond the call of duty to help you and your husband. In my opinion, and most who visit this forum he is a hero. 

    Based on the information that VG had available, he noted that you are the one who is posting....generally it is best that the patient posts and gets involved. He had no way of knowing what or what not your husband is doing or not doing. He was trying to be helpful to you. 

    As an observer, your post comes off to me as aggressive.

    I wish you well, and hope that you will reconsider what you posted to VG, who really helped you a lot.

     

  • Old Salt
    Old Salt Member Posts: 1,284 Member

    Dear Elsie,I understand that

    Dear Elsie,

    I understand that you are upset due to the challenge that you and your husband are going through, however it is my opinion that you have overreacted to VG's post. I feel that VG has gone beyond the call of duty to help you and your husband. In my opinion, and most who visit this forum he is a hero. 

    Based on the information that VG had available, he noted that you are the one who is posting....generally it is best that the patient posts and gets involved. He had no way of knowing what or what not your husband is doing or not doing. He was trying to be helpful to you. 

    As an observer, your post comes off to me as aggressive.

    I wish you well, and hope that you will reconsider what you posted to VG, who really helped you a lot.

     

    Let's just call it a misunderstanding

    I have to agree with hopeful. There was no evidence in your posts that your husband was involved in developing treatment strategies. Good for him though, and now, let's get back to the topic of this thread.

  • VascodaGama
    VascodaGama Member Posts: 3,638 Member
    Old Salt said:

    Let's just call it a misunderstanding

    I have to agree with hopeful. There was no evidence in your posts that your husband was involved in developing treatment strategies. Good for him though, and now, let's get back to the topic of this thread.

    Upsetting post

    Elsie

    I am sorry if I’ve infringed your feelings. I am not a native English speaker and quite often I struggle in finding words to give meaning to my sentences. I look hard for assertiveness when posting. This time I stepped on your toes.

    In any case it is good to know that your man is following our exchanged views on his case. Please note that here we are just a bunch of friends sharing the same problem and trying to help each other. We are not doctors but laymen informing about our experiences and accumulated findings while confronting the disease.

    You can flag my posts or request the administration to delete them.

    VG

  • Josephg
    Josephg Member Posts: 372 Member

    Upsetting post

    Elsie

    I am sorry if I’ve infringed your feelings. I am not a native English speaker and quite often I struggle in finding words to give meaning to my sentences. I look hard for assertiveness when posting. This time I stepped on your toes.

    In any case it is good to know that your man is following our exchanged views on his case. Please note that here we are just a bunch of friends sharing the same problem and trying to help each other. We are not doctors but laymen informing about our experiences and accumulated findings while confronting the disease.

    You can flag my posts or request the administration to delete them.

    VG

    Upsetting Post -> Let's Just Call it a Misunderstanding

    When I read 'Elsie's' posted reply to Vasco, I wanted to fire off an immediate response in support of 'Vasco', but I took 10 long breaths, and I still was not emotionally stable enough to do so. So, I logged off, deciding to wait a few days.  This was a wise decision on my part, in my opinion.

    'Hopeful' replied in a non-emotional, logical and exemplary manner, much better than I could have ever done so, myself.  Thank you, 'Hopeful'.

    'Vasco', you are a hero to all of us here on this Forum, a fantastic source of information and guidance, as well as a fantastic source of inspiration to us all.  For my sake, 'Vasco', please continue to be as candid, straight forward, and honest as you have always been with us on this Forum, as it represents a very necessary part of the tremendous value that you provide to all of us.

    Cancer causes a tremendous amount of emotion and stress in those folks who are diagnosed with it, as well as for all of the people who know, love and share life experiences with the cancer patient.  We all live with this stress and emotion each and every day in our lives after being diagnosed with cancer, with some days being better or worse than others.  This stress and emotion lies close to the surface of our psychological being, similar to a dormant volcano.  Occasionally, those emotions erupt out of us, and we temporarily lose a part of our self-control, and we may say or do things that we later regret. On those unfortunate occasions, we need to acknowledge that we lost our self control, apologize to those on the receiving end of our outburst, and then get back on track, moving forward with our lives, and supporting the cancer patient (or ourselves, if we are the cancer patient).

    Thank you 'Old Salt' for your closing comment, "Let's get back to the topic of this thread".

  • mrspjd
    mrspjd Member Posts: 694 Member
    Josephg said:

    Upsetting Post -> Let's Just Call it a Misunderstanding

    When I read 'Elsie's' posted reply to Vasco, I wanted to fire off an immediate response in support of 'Vasco', but I took 10 long breaths, and I still was not emotionally stable enough to do so. So, I logged off, deciding to wait a few days.  This was a wise decision on my part, in my opinion.

    'Hopeful' replied in a non-emotional, logical and exemplary manner, much better than I could have ever done so, myself.  Thank you, 'Hopeful'.

    'Vasco', you are a hero to all of us here on this Forum, a fantastic source of information and guidance, as well as a fantastic source of inspiration to us all.  For my sake, 'Vasco', please continue to be as candid, straight forward, and honest as you have always been with us on this Forum, as it represents a very necessary part of the tremendous value that you provide to all of us.

    Cancer causes a tremendous amount of emotion and stress in those folks who are diagnosed with it, as well as for all of the people who know, love and share life experiences with the cancer patient.  We all live with this stress and emotion each and every day in our lives after being diagnosed with cancer, with some days being better or worse than others.  This stress and emotion lies close to the surface of our psychological being, similar to a dormant volcano.  Occasionally, those emotions erupt out of us, and we temporarily lose a part of our self-control, and we may say or do things that we later regret. On those unfortunate occasions, we need to acknowledge that we lost our self control, apologize to those on the receiving end of our outburst, and then get back on track, moving forward with our lives, and supporting the cancer patient (or ourselves, if we are the cancer patient).

    Thank you 'Old Salt' for your closing comment, "Let's get back to the topic of this thread".

    PCa Social Networking Sites

     

    Hi Elsie,

     

    In addition to a number of reputable PCa educational websites & co-ed face2face PCa support groups, (for example, google: UsToo, PCRI, PCF, etc.), there are some really excellent PCa social networking sites that have enlightened views re women posting about/for their husband/partner with PCa. One such site is:

     

    The HW PCa site provides great oversight by well informed, tactful & kind forum moderators, has a very user friendly topic search feature, and a diverse HW PCa forum membership comprised of men & women who offer a wide variety of different perspectives on almost every aspect of PCa. 

     

    Wishing you and your husband all the best. 

     

    mrs pjd

    Wife of a PCa Survivor (Stage T3, locally advanced, high volume, high risk PCa)