flyingphil Posted July 3, 2019 Share Posted July 3, 2019 I wonder if some of you more experienced members could provide some insight for me. I am just about to begin Carboplaton therapy having 'failed' Docetaxel, Cabazitaxel and Lutetium over the past 8 years. Concerned about the 'puffiness' and appetite stimulating factors of Pred I raised the issue with one on my Med Once (one at Peter Mac and the other in Darwin) who suggested that we could go from 4 x 5 mg of Pred. per day to 1 x 5 mg of Dex. with similar advantages. Subject to the usual caveats, should I go with the Dex. or continue with the Pred? Any advice would be much appreciated. Phil PSA now up to 900 ... Link to comment Share on other sites More sharing options...
Chalkie Posted July 3, 2019 Share Posted July 3, 2019 Hi Flyingphil You are in a similar boat to me. I have failed Doxetaxel, and Lutetium and while I have had 4 infusions of Cabazitaxel my PSA continues to rise - it is close to 2500 now and my oncologist at PeterMac is saying that another one or two infusions of Cabazie will see the end of that and other options are being considered. My bloods are down (red cells etc should be 100+ but are in the 80s) This could preclude me form trials so another chemo is probably my next option. She said that the fatigue (getting puffed out quickly) is probably due to the collateral damage done to my bone marrow by the Lut, although it could be the chemo. I don't know about the Dex but it is handy to know that there are other options. Hang in there - we have to make the most of the great lives we have had. Link to comment Share on other sites More sharing options...
Charles Thurgood Posted July 4, 2019 Share Posted July 4, 2019 Greetings Flingphil and Chalkie, After 4th. Lutetium PSA was at 70 but 10 weeks later up to 370 so back to original oncologist who "weighed" options of 5th. Lutetium or Enzalutamide and came down in favour Enzalutamide (4x40mg daily for 12 weeks). I get "puffed out" quickly and also have "morning sickness" dry nausea which responds to a half tablet of 8mg. Ondansetron. Apart from this life goes on and I remain relatively active. Link to comment Share on other sites More sharing options...
Patrick Turner Posted July 4, 2019 Share Posted July 4, 2019 Hi Phil and Chalkie, I'm 72, still alive. Your stories are somewhat full of woe, with chemo and Lu177 both failing. But I have had Lu177with response that reduced Psa from 25 after failed Docetaxel and before 4 x Lu177 starting last Nov 4 to about 1.6 at 3 weeks ago. I am continuing on enzalutamide since I began it after No 3 Lu177, and I don't know how long docs will keep me on this. I'm taking 2 x 5mg prednisolone just in case my adrenal gland can't make the natural drug that the predi replaces after being knocked around by abiraterone in early 2018. I cannot advise on dexamethasone because I've taken so little of it, even during chemo, and not once during 4 x Lu177. So what does your PsMa Ga68 scans show? I might think that if these scans show good image of Pca locations then maybe more Lu177 or Ac225 should work. While on enzalutamide, I'm not having any symptoms that I think might be associated with that drug. No morning sickness, but brekky is just 4 tablespoons of rolled oats, and pot of green tea. I do recall having hypotension after 2012 often even without any drugs except plain ADT, when I'd get a racing heart and be out of breath if I was sitting, then got up to move around. And that was when I was cycling up to 300km a week, very fit. I don't know much about Carboplatin but maybe its got worse side effects than Docet or Cabaza, and I guess Carbo is getting toward the last bottle in the cupboard. Docs giving Lu177 said that if Psa bounces up, and it is likely, at some time, then I'd have yet another PsMa Ga68 scan and if worthwhile image appears, they'd try a dose of Ac225. All possible from Theranostics Australia. But so far, slight intermittent dry mouth is only side effect from Lu177. It may get worse, because radiation often causes side effects that develop long after the treatment because the affected cells in saliva glands cannot replace themselves well after the treatment due to DNA damage. One might hope the same occurs to the Pca but as we all should know the Pca can mutate its way around nuclear warfare quite well. I have a right hip problem with osteo arthritis which may have been caused by initial EBRT to PG way back in 2010 and EBRT is not good for cartilage material. A new hip joint is maybe possible, but its in an area affected by radiation so soft tissues may be very slow to heal, or bleed a lot. I asked 1 doctor about an arthroscopy which might work for several years and allow me to cycle and thus get decent exercise with all its benefits. The arthroscopy is far less invasive than a new joint. I'd had 2 knee arthroscopies in 2005, and cycled 100,000km before needing new joints in 2017 during Psa nadir when it was < 0.4. Meanwhile, I am staying alive, and in this cold Canberra winter weather I did not do the vine and hedge pruning as early as I should have. I am not looking forward to grass mowing. There are many things I just won't do so I may have to find a contractor who will do such things as well as I always have and without ripping me off. I could end up needing a wheel chair so easily. Top half of body still works OK so I'll swim more in Summer unless hip pain is unbearable. I can only wish the best for you, Patrick Turner. Link to comment Share on other sites More sharing options...
Kezza2 Posted July 4, 2019 Share Posted July 4, 2019 G'day comrades, I am coming down from 10 weeks on dexamethazone @ 10mg/day, and the major side effect was loss of muscle mass and strength, particularly in the legs. I seem to be on the road to recovery now, but for quite a while I could not stand up unaided. I didn't have any noticable or at least major side effects from Pred, which I took in combination with abiraterone for two years until it failed. I think fatigue is a pretty common side effect of most of these drugs, I noticed it particularly resulting from chemo (docetaxel). So in answer to your question, I would probably lean towards dex, but watch your leg muscles and do some strength exercises, even if it is just multiple reps of standing up / sitting down. Link to comment Share on other sites More sharing options...
flyingphil Posted July 4, 2019 Author Share Posted July 4, 2019 6 hours ago, Chalkie said: Hi Flyingphil You are in a similar boat to me. I have failed Doxetaxel, and Lutetium and while I have had 4 infusions of Cabazitaxel my PSA continues to rise - it is close to 2500 now and my oncologist at PeterMac is saying that another one or two infusions of Cabazie will see the end of that and other options are being considered. My bloods are down (red cells etc should be 100+ but are in the 80s) This could preclude me form trials so another chemo is probably my next option. She said that the fatigue (getting puffed out quickly) is probably due to the collateral damage done to my bone marrow by the Lut, although it could be the chemo. I don't know about the Dex but it is handy to know that there are other options. Hang in there - we have to make the most of the great lives we have had. Hi Chalkie, Thanks for your response. Yes, it does sound as if we are are on parallel tracks. I too received the Lutetium at Peter Mac. Life is still good. Phil Link to comment Share on other sites More sharing options...
Charles Thurgood Posted July 4, 2019 Share Posted July 4, 2019 Greetings I forgot (loss of short term memory) to mention that I'm also receiving Zoladex 10.8 mg at 3 monthly intervals and Denosumab (XGEVA) 120mg. at monthly intervals. Guess I won't have another PSA reading until end of Enzalutamide. Lutetium injections were through the Wesley Hospital in Brisbane. My age is 77 years. Link to comment Share on other sites More sharing options...
Patrick Turner Posted July 4, 2019 Share Posted July 4, 2019 1 hour ago, Charles Thurgood said: Denosumab (XGEVA) 120mg. at monthly intervals. That sounds like a lot of Deno each month. I had a few shots of that at 2 monthly intervals and my lower jaw got start of jawbone necrosis, and this was confirmed by dentist and oral surgeon, when they found a hole in jawbone skin that was just starting. This is a side effect of Deno, and far more likely for anyone on ADT. I read that such bone density manipulation makes no difference to Pca progress in bones. When I stopped having Deno, the pain in jawbone ceased, and hole closed up, so whatever bone died has been dealt with by body and maybe repaired. I also had a shot of Aclasta, another permanent agent for keeping BD high in 2012, so using the Deno did not do me much good. Who is the company doing Lu177 in Brisbane? Is it Theranostics Australia, or is it done by the Wesley Hospital? I have had Skype appoints with Doctor Macfarlane in Brisbane, and he works for TA. Despite all the chemicals so far, brain works OK, memory not bad, and I can walk around OK but now have a dodgy hip that needs a fix. Pca symptoms have all about gone. Try to stay well, all the best, Patrick Turner. Link to comment Share on other sites More sharing options...
Chalkie Posted July 4, 2019 Share Posted July 4, 2019 10 hours ago, Charles Thurgood said: Greetings Flingphil and Chalkie, After 4th. Lutetium PSA was at 70 but 10 weeks later up to 370 so back to original oncologist who "weighed" options of 5th. Lutetium or Enzalutamide and came down in favour Enzalutamide (4x40mg daily for 12 weeks). I get "puffed out" quickly and also have "morning sickness" dry nausea which responds to a half tablet of 8mg. Ondansetron. Apart from this life goes on and I remain relatively active. Link to comment Share on other sites More sharing options...
Chalkie Posted July 4, 2019 Share Posted July 4, 2019 Hi Charles When on Lute I fatigue was an issue - but when I came off it I started to manage better and was able to walk the golf course. I was in pain as well and patches helped. Blood counts were down - ie. red and white cells. Probably because of disease in bones but also some colateral damage from lute. Had a couple of units of blood to help and after 4 bouts of Cabazy I am no longer on pain killers and counts are in the 80s -enough to walk up slight gradients. Have you had your bloods checked? Lots of options for us so hang in there Chalkie Link to comment Share on other sites More sharing options...
ardee Posted July 4, 2019 Share Posted July 4, 2019 No one seems to be answering the precise question - prednisone vs dexamethasone! We have supported gents who have switched from pred to dex .... usually because they had bad reactions to prednisone. Pred appears to be favored for a daily protocol with dex used just over 3 days around the infusion. I think dex is stronger, and it does not have the same impact on the adrenals - you don't have to wean off it as you do with pred. With chemo, dex is given to control inflammation; prednisone is given with abiraterone to compensate for the suppression of the adrenals. When given with chemo, I think it is more for inflammation control between infusions though not sure - I am not a doc. Thought I had a link for you, but cannot find it - I will write my co-moderator to see if he has it! I know there have been studies - a quick look brings up: https://www.ncbi.nlm.nih.gov/pubmed/25457497 https://www.ncbi.nlm.nih.gov/pubmed/30099821 - I think this is what I was thinking of, but it refers to use with abi. https://ascopubs.org/doi/abs/10.1200/JCO.2018.36.6_suppl.239 - again for abi Hope this is more on point for you and helps! Onward & upwards, rd www.ancan.org Link to comment Share on other sites More sharing options...
Charles (Chuck) Maack Posted July 4, 2019 Share Posted July 4, 2019 The only information I found in past research regarding dexamethasone replacing prednisone was when accompanying abiraterone acetate/Zytiga. At the time I wrote remarks regarding such use with the reference that supported it. I just scanned the internet and was unable to find any information that mention dexamethasone replacing prednisone to accompany treatment with carboplatin, so unable to provide supportive information to this suggestion/recommendation of those MedOncs to whom you spoke. Since the corticosteroid/steroid prednisone is mentioned when prescribed abiraterone acetate/Zytiga (and is to be taken as one 5mg tablet twice daily), thought it reasonable to report that a different corticosteroid, dexamethasone, has also been found to be just as effective and only requires one 0.5mg tablet taken daily to accompany Zytiga. This first reference mentions prednisolone accompanying Zytiga though the effects of prednisolone and prednisone are generally the same between prednisone or prednisolone: http://theoncologist.alphamedpress.org/content/20/5/e13.full This next reference specifically mentions the similarity of effect between prednisone and dexamethasone accompanying abiraterone acetate but includes that distinction of only one 0.5mg of dexamethasone as opposed to requiring two 5mg of prednisone. http://www.ncbi.nlm.nih.gov/pubmed/25314055 Thus only requiring a single 0.5mg dose of dexamethasone once daily may be the medication preferred to accompany Zytiga as a cost saver since its effect is found to be just as effective as prednisone or prednisolone. In any event, worthy of discussion with one’s treating physician. Link to comment Share on other sites More sharing options...
flyingphil Posted July 4, 2019 Author Share Posted July 4, 2019 Thanks Chuck and others for your detailed responses. As is often the case, further background may be needed to focus more closely. I recently completed 7 infusions of Cabazitaxel before the PSA value began to increase from 800 to 1200 (approx) in a matter of 6 weeks. I had been taking 5 mg of Pred daily but once my Peter Mac Oncologist reviewed the figures he suggested to increase the dosage to 20 mg daily until we could do further scans (CT, MRI etc) and begin monthly infusions of Carboplatin (next week). Because I was concerned regarding the effect on appetite, weight gain and general leg 'puffiness' from the Pred I raised the issue with my local Onc. who suggested that we could switch to (give Dex a try) and equivalent dosage of Dex. (how can I tell if the Dex is in fact acting as an equivalent?). Any suggestions greatly appreciated. Phil Link to comment Share on other sites More sharing options...
ardee Posted July 4, 2019 Share Posted July 4, 2019 Don't want to morph this thread into another subject, but as Chuck and I have pointed out, dex may actually be preferable in the context of abiraterone acetate. This thread is more about steroids accompanying chemo. I checked with my co-moderator and he sent me teh same reference as Chuck M cites - in addition he provided the link to the paper on which that editorial is based: http://theoncologist.alphamedpress.org/content/19/12/1231.abstract.html?ijkey=ed9f330ff695e0873caa3c809c8fb69dfe73b78c&keytype2=tf_ipsecsha ... and a similar paper in British Journal of Cancer where Johann de Bono is one of the authors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4264443/ ... one practical observation w.r.t. prednisone and abi. While the trial protocol was 5 mg pred twice daily, many men now take the abi with 5 mg just once a day with their GU med onc's approval. I would guess about 75% of the men who attend our advanced PCa virtual group are only on 5 mg versus 10 mg. Link to comment Share on other sites More sharing options...
Charles Thurgood Posted July 4, 2019 Share Posted July 4, 2019 Greetings flyingphil, As Chuck points in his research that a 0.5mg dose of dexamethasone is equivalent to 10 mg of prednisone perhaps discuss with your oncologist starting with dexamethasone and monitoring the side effects. Link to comment Share on other sites More sharing options...
Charles (Chuck) Maack Posted July 5, 2019 Share Posted July 5, 2019 Hello Phil, When prednisone at 5mg twice daily is replaced with dexamethasone to accompany Zytiga/abiraterone acetate, the dexamethasone is prescribed at one 0.5mg once a day. If this is how the equivalent is determined as indicated in the below url, this would indicate you divide whatever prednisone mg was otherwise prescribed by 20 to determine the amount of dexamethasone would be equivalent. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4425392/ Charles (Chuck) Maack (ECaP) - Continuing Prostate Cancer Patient Since 1992, Advocate, Activist, Volunteer Mentor since 1996 to men diagnosed with Prostate Cancer and their Caregivers locally and on-line Worldwide. Email: maack1@cox.net Website: www.theprostateadvocate.com My Efforts: https://tinyurl.com/yd8qz2os Link to comment Share on other sites More sharing options...
Charles (Chuck) Maack Posted July 5, 2019 Share Posted July 5, 2019 More info: What are prednisone and dexamethasone, and if prednisone switched to dexamethasone, what are dosage differences? Prednisone and dexamethasone are synthetic glucocorticoids Dexamethasone is about ten times more powerful than prednisone, thus if switching from prednisone to dexamethasone, the dosage equivalent for dexamethasone should be at least ten times less. (Prednisone 5 mg, to dexamethasone 0.5mg) Both of these glucocorticoids are given when a prolonged action is desired. This includes replacing cortisol in patients with permanent adrenal insufficiency (Addison’s disease) or suppressing ACTH secretion in patients with congenital adrenal hyperplasia (ACTH: Adrenocorticotropic hormone, as its name implies, stimulates the adrenal cortex. More specifically, it stimulates secretion of glucocorticoids). In such cases, the medication is taken at bedtime, thus the patient awakens with appropriate levels of steroid. Very rarely, these medications cause insomnia if taken at night. These longer acting glucocorticoids are also used to suppress inflammation or immune rejection (more likely why prescribed in treatment of our prostate cancer). The longer acting glucocorticoids have been reported to have greater catabolic activity on bone. https://tinyurl.com/yxh59tr2 Link to comment Share on other sites More sharing options...
Kezza2 Posted July 6, 2019 Share Posted July 6, 2019 Comrades, I have been following this post with great interest, and a sincere thankyou to all who have contributed. It has contained a huge amount of information. I was accepted into the TheraP trial and started cabazitaxel yesterday - 1st of 10 infusions - so as per the protocol 2 x dexamethazone and then change to prednisolone until the next infusion. As mentioned in a previous post, I had mets appear in the dura, the membrane between the skull and brain, which we reduced in size with dexamethazone at 10mg / day prior to IMRT radiation. I have been weaning off dex post radiation, but have still been taking 2mg x twice a day to minimise side effects. And here will be the interesting bit - how much of the problems I have been having are due to dex side effects ??? It seems to me in light of this discussion, that 4mg/day of dex, equiv to around 40mg/day pred, is a pretty high dose, especially over a prolonged period. Have I just been overdosing ?? Keep fighting the good fight Kezza2 Link to comment Share on other sites More sharing options...
flyingphil Posted July 6, 2019 Author Share Posted July 6, 2019 On 7/4/2019 at 2:31 PM, Kezza2 said: G'day comrades, I am coming down from 10 weeks on dexamethazone @ 10mg/day, and the major side effect was loss of muscle mass and strength, particularly in the legs. I seem to be on the road to recovery now, but for quite a while I could not stand up unaided. I didn't have any noticable or at least major side effects from Pred, which I took in combination with abiraterone for two years until it failed. I think fatigue is a pretty common side effect of most of these drugs, I noticed it particularly resulting from chemo (docetaxel). So in answer to your question, I would probably lean towards dex, but watch your leg muscles and do some strength exercises, even if it is just multiple reps of standing up / sitting down. Hi Kezza2, Thanks for your advice and personal observations. That is exactly my problem, loss of muscle mass and leg strength. Getting out of a chair is 'another tale'. As I was given the option of 'trying' Dex (by my local Onc) and have done so for a week or so in the hope that the 'weakness' might be addressed I will return to Pred at 4 x 5 mg (as recommended by my Peter Mac Onc) and see if there is some improvement in the leg strength over a few weeks. I must address this issue as you appreciate, it has major implications for mobility ... I have already 'skipped' the gym today .. Go well!! Phil Link to comment Share on other sites More sharing options...
Charles (Chuck) Maack Posted July 6, 2019 Share Posted July 6, 2019 Flying Phil: 10mg daily of dexamethazone appears exceptionally a too high dose! Considering that dexamethasone is ten times more powerful than Prednisone, that high does appears way to high. Did your prescribing physician really understand the difference in equivalency between prednisone and dexamethasone when prescribing? It appears not so! You or all of you should do some study of dexamethasone strength and when being prescribed or switching from prednisone, certainly question that the physician is totally knowledgeable in the difference. Are you sure you are correct, Phil, that you were on 10mg of dexamethasone daily - OR DID YOU MEAN PREDNISONE? Link to comment Share on other sites More sharing options...
flyingphil Posted July 6, 2019 Author Share Posted July 6, 2019 Chuck: Thank you for your response. I agree that 10 mg/day of Dex as quoted by Kezza 2 is a very high dose. In my case, the prescription requires 4 mg of Dex once daily to replace 4 x 5 mg of Pred. However, this does still seem too high. As I have the option of returning to Pred and observed no/little muscle weakness previously I shall return to Pred and hopefully build some muscle mass. Link to comment Share on other sites More sharing options...
Kezza2 Posted July 7, 2019 Share Posted July 7, 2019 11 hours ago, Charles (Chuck) Maack said: Flying Phil: 10mg daily of dexamethazone appears exceptionally a too high dose! Considering that dexamethasone is ten times more powerful than Prednisone, that high does appears way to high. Did your prescribing physician really understand the difference in equivalency between prednisone and dexamethasone when prescribing? It appears not so! You or all of you should do some study of dexamethasone strength and when being prescribed or switching from prednisone, certainly question that the physician is totally knowledgeable in the difference. Are you sure you are correct, Phil, that you were on 10mg of dexamethasone daily - OR DID YOU MEAN PREDNISONE? Hi Chuck, Like you I had begun questioning the dose of dex I was prescribed, and that gave me all the muscle problems. So I asked my med onc, and the response was that the 10mg dex was to reduce the swelling from the mets in the dura, causing the pressure in my brain, prior to IMRT radiation. The problem was the delay in commencing radiation, so the dex was continued for a bit longer than intended, hence the increased side effects. It also meant a longer weaning period was necessary - 2mg x twice a day for 2 weeks, then 2mg/day for another 2 weeks, but I have noticed substantial improvement over the last week. Dex is a great drug for its intended purpose, but we need to understand it a bit more that just calling it another steroid. Link to comment Share on other sites More sharing options...
Charles (Chuck) Maack Posted July 7, 2019 Share Posted July 7, 2019 Ahha, I wasn't aware the dex in your case was for swelling in the dorsal area of the brain. Actually, the original purpose for dexamethasone was for that very purpose, and higher doses are the norm. Unfortunately, the weakened muscles complained about are just one of several side effects that can be experienced. Did you also experience any of these (just curious)?: increased appetite, irritability, difficulty sleeping, swelling in your ankles and feet (fluid retention) heartburn, increase in blood sugar levels (those with diabetes have to be monitored closely when prescribed dexamethasone and sometimes require change in diabetes meds). Link to comment Share on other sites More sharing options...
Kezza2 Posted July 8, 2019 Share Posted July 8, 2019 Hi Chuck, The penny drops. Yes it was not until you gave us a comparative strength indicator that it occured to me just how high a dose of dex I was on, which the explained the side effects. The muscle weakness, particularly the legs (quads) was my only serious side effect, sleep, appetite and mood were largely unafffected. I have now dropped the dex out completely, replaced with 10mg prednisolone/day as part of the cabazitaxel protocol. Lets see how we go. Link to comment Share on other sites More sharing options...
ardee Posted July 10, 2019 Share Posted July 10, 2019 A propos, I just saw this article published last Friday in 'cancernetwork": What Is the Ideal Glucocorticoid Regimen Combined With Abiraterone for Prostate Cancer? O&U, rd Link to comment Share on other sites More sharing options...
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