Recurrent prostate CA after six years post surgery, radiation
Comments
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Zytiga
Hi All,
Now that I have HRPC after almost a year on Lupron, my oncologist will start me on Zytiga next week. My bone scan and CT shows disease progression- some new areas in the bones and some areas where the uptake has lessened.
Jim
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Zytiga plus Prednisone
Jim
I am sorry for the advanced status. Zytiga is not new or a pilot drug in treating PCa but it needs care because of its side effects. You need to read about the stories of guys like Ralph that are on Zytiga. Get constant checks on the lipids to avoid anemia. (http://www.medicinenet.com/anemia/article.htm)
Inquire about the timing when to take the drug in regards to your intake of food. Prednisone, which I believe will pair with your Zytiga, got its own side effects too. Typically one continues with the LHRH agonist.
I hope you manage things well and that cancer is killed by your continuing fight. You may need to find a proper diet to fit this newer “step” in the treatment.Here are links you may be interested in reading;
http://csn.cancer.org/node/236006
http://csn.cancer.org/node/258154
http://csn.cancer.org/node/240162
http://csn.cancer.org/node/243176
http://csn.cancer.org/node/238485
A link to Zytiga’s site;
http://www.zytiga.com/Wishing you the best of lucks.
VGama
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Five months on ZytigaVascodaGama said:Zytiga plus Prednisone
Jim
I am sorry for the advanced status. Zytiga is not new or a pilot drug in treating PCa but it needs care because of its side effects. You need to read about the stories of guys like Ralph that are on Zytiga. Get constant checks on the lipids to avoid anemia. (http://www.medicinenet.com/anemia/article.htm)
Inquire about the timing when to take the drug in regards to your intake of food. Prednisone, which I believe will pair with your Zytiga, got its own side effects too. Typically one continues with the LHRH agonist.
I hope you manage things well and that cancer is killed by your continuing fight. You may need to find a proper diet to fit this newer “step” in the treatment.Here are links you may be interested in reading;
http://csn.cancer.org/node/236006
http://csn.cancer.org/node/258154
http://csn.cancer.org/node/240162
http://csn.cancer.org/node/243176
http://csn.cancer.org/node/238485
A link to Zytiga’s site;
http://www.zytiga.com/Wishing you the best of lucks.
VGama
Thanks VGama for your always thoughtful and helpful replies.
In addition to Lupron, the Zytiga regimen plus Prednisone has knocked my PSA back to undetectable for now. I am what is termed a low PSA produces but my bone scan looks like a lighted Christmas tree. I am very thankful that, thus far, I have had only a slight back ache with one flair up just prior to going on Zytiga when my PSA started to rise rapidly, although only up to 2.3.
Can anyone share their experiences who are taking Zytiga?
Am due for a bone scan fairly soon.
Hope that you are continuing to fight this disease and are doing well.
Best wished to all.
Jim
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Punching the banditgrey ghost said:Five months on Zytiga
Thanks VGama for your always thoughtful and helpful replies.
In addition to Lupron, the Zytiga regimen plus Prednisone has knocked my PSA back to undetectable for now. I am what is termed a low PSA produces but my bone scan looks like a lighted Christmas tree. I am very thankful that, thus far, I have had only a slight back ache with one flair up just prior to going on Zytiga when my PSA started to rise rapidly, although only up to 2.3.
Can anyone share their experiences who are taking Zytiga?
Am due for a bone scan fairly soon.
Hope that you are continuing to fight this disease and are doing well.
Best wished to all.
Jim
Jim,
Not many in this forum report experiences on Zytiga. Ralph has been the best fella explaining us details. So far in his last e-mail to me of April of 2013 was for a low PSA of 0.6. He spoke about pain in the joins which he identifies as a side effect from Zytiga. I would sugest you to send him a CSN mail.
In this link Zytiga patients discuss their experiences;
https://www.whatnext.com/questions/anyone-taking-zytiga-to-treat-stage-iv-prostate-cancerBest wishes for continuing good results with the treatment.
VGama
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Thanks VGamaVascodaGama said:Punching the bandit
Jim,
Not many in this forum report experiences on Zytiga. Ralph has been the best fella explaining us details. So far in his last e-mail to me of April of 2013 was for a low PSA of 0.6. He spoke about pain in the joins which he identifies as a side effect from Zytiga. I would sugest you to send him a CSN mail.
In this link Zytiga patients discuss their experiences;
https://www.whatnext.com/questions/anyone-taking-zytiga-to-treat-stage-iv-prostate-cancerBest wishes for continuing good results with the treatment.
VGama
I will try to get in touch with Ralph. I have not experienced any pain in my joints as he has, but hopefully he is doing better. Now on to the latest link you sent.
Many thanks.
Jim
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PSA Went up after 1st monthly injectionVascodaGama said:A ride on Lupron
Grey Ghost (Jim)
Welcome to the “Libido-less Wonder”. The world of castration.
You can find many past threads here dealing with Lupron (and the hormonal treatment or hormonal blockade). Taking Lupron is easy but the side effects of hypogonadism may put you down.
I have been on HT with Eligard shots (similar to Lupron) since November 2010. I have experienced numerous side effects being fatigue the most pronounced. My body accepted well the castration status and I managed to tackle the worse effects with a fitness physical program and diet.
Libido and pubic hair disappears and the loss of muscle mass makes us fell ten years older.
The nicest thing though is that it all returns to a normalcy once we stop taking the drug and the testosterone gets higher to the normal levels.
I wonder if your doctor has prescribed you an antiandrogen (such as Casodex) to be taken (two weeks) before the Lupron shot. I say that because agonists (like Lupron) cause a flare (of testosterone) initially and such may cause pain in patients with metastases at the bone.
There have been paralyzing cases in patients with spinal metastases because of compression of the spinal cord. That may not be your case, but as a precaution to have a dose of antiandrogens is proper.
The hormonal treatment principle is to block the testosterone from reaching the cancer. In the process many cells will die by starvation (PCa feeds on androgens like testosterone). To avoid the feeding, Lupron takes the lead by causing the testicles to stop the “production” of testosterone (hypogonadism). For extra blockade, HT protocols can include an antiandrogen to block the cancerous cells’ androgen receptors (AR) so that they do not absorb the testosterone (dying in the process). Still some doctors include in their HT protocol a third drug to block the production of dihydrotestosterone (DHT) which is a tenfold more powerful form of testosterone. These are 5-Alpha Reductase Inhibitors (5-ARI) such as Finasteride or Avodart.
Triple blockade is usually more effective in cases of PCa with bone metastases. In these cases a bisphosphonates like Zometa or Fosamax are also recommended to treat or avoid any bone loss.
Recently newer drugs have been reaching “the market” and they target the intratumoral effect of the cancer when it starts to produce its own androgens. Other target drugs avoid the cancer from resting at the places it most likes to spread (Xgeva helps to reconstruct the bone loss).
In your case with apparent bone metastases, a drug called Alpharadin may be proper. This is a newer “wonder drug” that kills PCa at bone with its radioactive substance. You may want to discuss with your doctor about any possibility of getting involved in a trial for this drug. Trials are safe and the best way to get “special” drugs that otherwise would not be available to the general folks.
Here is a link about the drug and the trial;
http://www.youtube.com/watch?v=NwPbMDktMWc
http://advancedprostatecancer.net/?cat=818
http://www.fiercebiotech.com/tags/alpharadin
I would recommend you to research the net about the side effects of hormonal treatment. You can also order from Amazon used copies of the fantastic very comprehensive book of Dr. Charles “Snuffy” Myers named;
“Beating Prostate Cancer: Hormonal Therapy & Diet” latest edition.
One important aspect of the hormonal manipulations is to monitor the drug’s effectiveness not only through tests of PSA but with periodical tests of testosterone and DHT (if on triple blockade).
Lipids and bone densitometry tests should also be included in the periodical monitoring.
Here is a link about diets for cancer;
http://www.cancer.gov/cancertopics/pdq/supportivecare/nutrition/Patient/page1#Keypoint5
Best wishes for a successful “ride on Lupron” and the treatment.
VGama
Not sure how to post on this list... So I'm going to start with Here. I was diagnosed with PCa 1999, Baseline PSA 4.6, Surgery to remove prostate 7-15-99, Gleason 3+4=7. one year later salvage radiation. When my PSA started to slowly again eight years ago my oncologist that specializes in PCa started me on Finastaride twice a day and Flutimide twice a day. My PSA doubling time began to increase over the last six months
My last PSA Feb 1st was 2.35. I had a CT, Bone scan at that time. The bone scan show two small hot spots. One in the rib cage area and one in my pelvis area. My oncologist and I decided it was time to start Lupron monthly for nine months and then an off period. I ceased Finastride and Flutimide two days before my 1st Lupron injection Feb 1st. Went back for my second injection of Lupron and PSA last week. To my surprise my PSA had gone up to 3.52! Does that mean I'm hormone refactory? Could my raise in my PSA be due to my long term use of Finastride? Help! Thanks in advance.
Saludos,
Ken... AK: ozonetwo
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Lupron and Zytiga
Hi all. hope that you are being treated successfully.
I have now been on Lupron for two years. PSA started to rise so oncologist added Zytiga which I have been taking for 8 months. The combination is keeping my PSA undetectable even though I have metastasis in several bone locations. My quality of life has beed better than expected with no pain thus far. Truly grateful. I know that this will not work forever and that chemo will be on the horizon, but so far so good.
Best Regards,
Jim
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Congratulationsgrey ghost said:Lupron and Zytiga
Hi all. hope that you are being treated successfully.
I have now been on Lupron for two years. PSA started to rise so oncologist added Zytiga which I have been taking for 8 months. The combination is keeping my PSA undetectable even though I have metastasis in several bone locations. My quality of life has beed better than expected with no pain thus far. Truly grateful. I know that this will not work forever and that chemo will be on the horizon, but so far so good.
Best Regards,
Jim
Jim,
Congratulaton on the low PSAs! Here's hoping they continue for a long time.
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Love your attitudegrey ghost said:Lupron and Zytiga
Hi all. hope that you are being treated successfully.
I have now been on Lupron for two years. PSA started to rise so oncologist added Zytiga which I have been taking for 8 months. The combination is keeping my PSA undetectable even though I have metastasis in several bone locations. My quality of life has beed better than expected with no pain thus far. Truly grateful. I know that this will not work forever and that chemo will be on the horizon, but so far so good.
Best Regards,
Jim
Atta boy Jim. Sounds like you have the right attitude for the fight. I am on Lupron, plus was on oral Casodex for first 100 days.There are ups and downs, but there would be regardless of ones health. I don't worry about the downs, and enjoy the ups.
dr
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Hi Everyonedakotarunner said:Love your attitude
Atta boy Jim. Sounds like you have the right attitude for the fight. I am on Lupron, plus was on oral Casodex for first 100 days.There are ups and downs, but there would be regardless of ones health. I don't worry about the downs, and enjoy the ups.
dr
Hope all members ware doing well. I have been on Zytiga for some 15 months now and have tolorated it well. My PSA levels are beginning to rise from 0.1-0.24 in the last six months. Am due for a bone scan and CT in a few weeks at MGH. The last bone scan showed disease progression. I am still active, but an occasional strained lower back slows me down at times. I am not experiencing pain elsewhere for which I am grateful. Will share the results of the bone scan and CT shortly.
Keep the faith everyone!
Jim
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Zytigagrey ghost said:Hi Everyone
Hope all members ware doing well. I have been on Zytiga for some 15 months now and have tolorated it well. My PSA levels are beginning to rise from 0.1-0.24 in the last six months. Am due for a bone scan and CT in a few weeks at MGH. The last bone scan showed disease progression. I am still active, but an occasional strained lower back slows me down at times. I am not experiencing pain elsewhere for which I am grateful. Will share the results of the bone scan and CT shortly.
Keep the faith everyone!
Jim
Grey Ghost,
I'm glad Zytiga is working so well for you. I will relate a friend's experiences with it, since as Vasco noted above that there is not a lot of discussion about the drug at the Board.
He began at a much later stage in the disease than you, as the following numbers demonstrate. From memory (probably three years ago) his PSA was around 700 when he went on it, after 12 years of treatments that involved RP, RT (several iterations and modes of delivery), then numerous HT drugs, and then months of Taxotere. As Vasco aslo noted, Zytiga is usually not given until Taxotere or other conventional chemo for metastatic PCa has ceased working, but I know there are exceptions.
Gary was not an extremely health-conscious individual, and quit Taxotere while it was still working, due to his unwillingness to endure the side-effects. A lapse of perhaps six months with no form of treatment allowed the disease to really gallop. It is possible (no one will ever know) that he might have lived a lot longer if he had contined the chemo, but it was his decision to make.
From 700 when beginning Zytiga his PSA number went down to a low of about 300, before beginning to climb again. I do not recall exactly how long he was on Zytiga, since it is of course a pill, and did not require me taking him for infusions. Following Zytiga's usefulness he went on the IV drug Jevtana, which re-lowered the PSA for some time, until it began racing back up, reaching over 1,000 before going into Hospice. Remarkably, he never expressed any bone pain or fractures during his 13-year fight.
I know his case was not typical, and as I stated, I suspect these drugs are much more effective when the patient is fully cooperative and following medical direction.
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Radium
Hi All,
After a year on Lupron and two years ion Zytiga with Lupron, my PSA has begun rising quickly from 0.1 in September, 2014 to 1.8 in March. 2015. If my CT shows no soft tissue cancer, I am betting my oncologist will use Radium 223 ((Xofigo) to work on the bone mets. My only pain is sporadic lower back pain which can beoccasionally severe. Not sure if that is mets or a physical problem. VGAMMA (thank you) has provides some links to Xofigo but any additional experiences would be appreciated.
Will keep you informed on my progress next week after I receive results and meet with the doc.
Hope everyone is doing wel,l and looking toward warmer brighter days.
Jim
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Xofigo (Radium-223)grey ghost said:Radium
Hi All,
After a year on Lupron and two years ion Zytiga with Lupron, my PSA has begun rising quickly from 0.1 in September, 2014 to 1.8 in March. 2015. If my CT shows no soft tissue cancer, I am betting my oncologist will use Radium 223 ((Xofigo) to work on the bone mets. My only pain is sporadic lower back pain which can beoccasionally severe. Not sure if that is mets or a physical problem. VGAMMA (thank you) has provides some links to Xofigo but any additional experiences would be appreciated.
Will keep you informed on my progress next week after I receive results and meet with the doc.
Hope everyone is doing wel,l and looking toward warmer brighter days.
Jim
Jim
It is nice to read another of your posts. Regarding Xofigo, I do not know many patients on this drug to advice something based on experiences. In any case, the drug is said to be good in controlling pain due to bone metastases. It seems to be a wonder drug in fighting the cancer at bone efficiently but it has risks which should be considered before start taking it. Bone marrow failure has been related to the drug so that one needs vigilance (detailed lipids tests) while on the drug. There are similar products on the market such as Strontium and Samarium but these have longer half-life which may be harmful to bone marrow producing cells. The good of Xofigo (Radium-223) is its shorter half-life of 11.4 days, losing the effects earlier. The question will be how much safer that can be.
I recommend you to get a list of Xofigo patients treated by your doctor or at the clinic so that you can consult and inquire about the side effects. Here is a link to the drug’s site;
http://www.xofigo-us.com/product-information/
How about visiting my little corner in the Europe for those “warmer brighter days”? Here apart from the good wine, sunshine and blue skies are guaranteed.
Best wishes and luck in your continuing journey.
VG
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Damn !VascodaGama said:Xofigo (Radium-223)
Jim
It is nice to read another of your posts. Regarding Xofigo, I do not know many patients on this drug to advice something based on experiences. In any case, the drug is said to be good in controlling pain due to bone metastases. It seems to be a wonder drug in fighting the cancer at bone efficiently but it has risks which should be considered before start taking it. Bone marrow failure has been related to the drug so that one needs vigilance (detailed lipids tests) while on the drug. There are similar products on the market such as Strontium and Samarium but these have longer half-life which may be harmful to bone marrow producing cells. The good of Xofigo (Radium-223) is its shorter half-life of 11.4 days, losing the effects earlier. The question will be how much safer that can be.
I recommend you to get a list of Xofigo patients treated by your doctor or at the clinic so that you can consult and inquire about the side effects. Here is a link to the drug’s site;
http://www.xofigo-us.com/product-information/
How about visiting my little corner in the Europe for those “warmer brighter days”? Here apart from the good wine, sunshine and blue skies are guaranteed.
Best wishes and luck in your continuing journey.
VG
V,
Beautiful weather and the best wines-- sounds like heaven on earth !
(Compare it to my jaunts to the North Pole in the boat, where the average mid-summer temp is 40 below zero F (not counting wind chill -- this is the ambient air temp). My father-in-law did Operation Deep Freeze duty at the South Pole decades ago, where winter temps can get down to 200 below zero F, not counting wind chill.)
max
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Xofigo and now TaxotereVascodaGama said:Xofigo (Radium-223)
Jim
It is nice to read another of your posts. Regarding Xofigo, I do not know many patients on this drug to advice something based on experiences. In any case, the drug is said to be good in controlling pain due to bone metastases. It seems to be a wonder drug in fighting the cancer at bone efficiently but it has risks which should be considered before start taking it. Bone marrow failure has been related to the drug so that one needs vigilance (detailed lipids tests) while on the drug. There are similar products on the market such as Strontium and Samarium but these have longer half-life which may be harmful to bone marrow producing cells. The good of Xofigo (Radium-223) is its shorter half-life of 11.4 days, losing the effects earlier. The question will be how much safer that can be.
I recommend you to get a list of Xofigo patients treated by your doctor or at the clinic so that you can consult and inquire about the side effects. Here is a link to the drug’s site;
http://www.xofigo-us.com/product-information/
How about visiting my little corner in the Europe for those “warmer brighter days”? Here apart from the good wine, sunshine and blue skies are guaranteed.
Best wishes and luck in your continuing journey.
VG
Hi VG and others,
I completed five infusions of Xofigo (Radium 223) before my body could not cope with it any more. My potassium dropped out of site and my albumin did the same leaving me exhausted and hospitilized for four days. My oncologist recommended that I stop any more Xofigo treatments. Will have a CAT scan and Bone scan next week to see where we are and how effective the Xofigo was. Am scheduled to go on chemo in a week or two. I noticed that some folks on the discussion board faired OK with the side effects. Will keep you posted.
To all who are fighting this disease and contributing your observations and experiences I wish you well in this struggle.
Grey Ghost
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Hello againgrey ghost said:Xofigo and now Taxotere
Hi VG and others,
I completed five infusions of Xofigo (Radium 223) before my body could not cope with it any more. My potassium dropped out of site and my albumin did the same leaving me exhausted and hospitilized for four days. My oncologist recommended that I stop any more Xofigo treatments. Will have a CAT scan and Bone scan next week to see where we are and how effective the Xofigo was. Am scheduled to go on chemo in a week or two. I noticed that some folks on the discussion board faired OK with the side effects. Will keep you posted.
To all who are fighting this disease and contributing your observations and experiences I wish you well in this struggle.
Grey Ghost
I'm glad your still fighting the good fight, Grey Ghost.
If you look at a post I made above in February you will see some of what I noted regarding my friend Gary and his experience with chemo for PCa two years ago. I've had a minor PCa t2a case myself, treated with RP, but I have not required any other PCa treatments, but went through six months of a five-chemo treatment for Hodgkin's lymphoma in 2009-2010.
Taxotere is a "conventional" chemo (ie, a "cytotoxic drug") that has many of the conventional chemo side-effects: loss of hair, extreme weakness/fatigue, loss of appetite, etc. Nausea is very easily prevented with current anti-mausea meds, so you need not worry about that. Taxotere is also one of the most commonly given breast cancer drugs.
I very much recommend that you get an IV port installed if that is an option for you. Know also that Jevtana and possibly other post-chemo drugs are on the market following end-of-effectiveness of Taxotere. Most often, Taxotere has a relatively long-term effectiveness agaionst PCa.
http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx
http://chemocare.com/chemotherapy/drug-info/Jevtana.aspx
max
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TaxotereHello again
I'm glad your still fighting the good fight, Grey Ghost.
If you look at a post I made above in February you will see some of what I noted regarding my friend Gary and his experience with chemo for PCa two years ago. I've had a minor PCa t2a case myself, treated with RP, but I have not required any other PCa treatments, but went through six months of a five-chemo treatment for Hodgkin's lymphoma in 2009-2010.
Taxotere is a "conventional" chemo (ie, a "cytotoxic drug") that has many of the conventional chemo side-effects: loss of hair, extreme weakness/fatigue, loss of appetite, etc. Nausea is very easily prevented with current anti-mausea meds, so you need not worry about that. Taxotere is also one of the most commonly given breast cancer drugs.
I very much recommend that you get an IV port installed if that is an option for you. Know also that Jevtana and possibly other post-chemo drugs are on the market following end-of-effectiveness of Taxotere. Most often, Taxotere has a relatively long-term effectiveness agaionst PCa.
http://chemocare.com/chemotherapy/drug-info/Taxotere.aspx
http://chemocare.com/chemotherapy/drug-info/Jevtana.aspx
max
Hi Max,
Thank you for your thoughtful response and links.
I am prepared to withstand the side effects of Taxotere for as long as possible. I hope I will have the necessary fortitude.
My oncologist mentioned that I will need a port. I was not aware of Jevtana, which in encouraging as well as the possible somewhat longer term effectiveness of Taxotere for some folks.
Best to you.
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more advice on radium 223grey ghost said:Xofigo and now Taxotere
Hi VG and others,
I completed five infusions of Xofigo (Radium 223) before my body could not cope with it any more. My potassium dropped out of site and my albumin did the same leaving me exhausted and hospitilized for four days. My oncologist recommended that I stop any more Xofigo treatments. Will have a CAT scan and Bone scan next week to see where we are and how effective the Xofigo was. Am scheduled to go on chemo in a week or two. I noticed that some folks on the discussion board faired OK with the side effects. Will keep you posted.
To all who are fighting this disease and contributing your observations and experiences I wish you well in this struggle.
Grey Ghost
I am new to this site. Found it last night as I was becoming a bit anxious about the fact that my spouse is to start radium 223 this week. He has NO symptoms at all, no bone pain but his last med Xtandi seemed to have stopped being effective. I have read a couple blogs now that sound like side effects of radium 223 are WAY worse then how my spouse feels now. His last scans reportedly showed a net decrease in bone mets despite rising PSA. I almost want to wait a bit before rushing into something that may spead up his decline, give him symtoms way worse then the no symptoms he has now. Any thoughts.
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questioning benefits of radium 223
From what I read about 223 it was "fast tracked" to approval because it decreased bone pain and prolonged life by 3 months. 3 MONTHS!!!!! I think given the side effects we would have to question quantity vs. quality of life. 3 months doesn't seem like much if you're in severe pain and can't get out of bed or work. Thoughts please.
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