Hi im a newbie here, my dad is diagnosed with PCa stage 4, with bone mets, castration resistant since March of 2015, initially with PSA 500 and Gleason 9. He already had Casodex initially and Lupron injections and was eventually given Zytiga for more than a 1 year, which worked well with no marked side effects. PSA went down to 2 with ZYtiga but after awhile PSA increased now to 100 again. Uro-onc wanted to try Docetaxel but my dad wanted to postpone chemo and instead is leaning towards Xtandi which is another option. But it is quite costly and we cant afford it. I was reading articles from the internet and they say that Canadian pharmacies give Xtandi for a lower price? How is this true? I am really looking forward to your suggestions especially those living in Canada. This disease freaks my family out. 😞
Xtandi is costly in the Philippines - Advanced Prostate...
Xtandi is costly in the Philippines
I would not expect a good response from Xtandi if Zytiga has failed because there is cross-resistance between the 2 drugs. There are not good odds for success. Here's an article on the subject and several doctors give their opinion on the likelihood of response to one of the two if the other has failed.
researchtopractice.com/COCP...
I agree with the oncology doctor and if it were me, I'd probably do the chemo first if it hasn't been tried yet and maybe re-challenge one of two of the androgen blockers later. I'd bet your chances are better going that route, but I'm not a doctor though so you should get a professional evaluation.
By the way, I'm on chemo now. Most people tolerate the side effects well so it's nothing to afraid of in my opinion.
Thank you Gregg for responding to my query. Looks like I would have to orient my dad on chemo and do some pep talk. I really appreciate your input thank you! 🙂
I didn't want to do chemo at first, but I'm really glad I'm doing it now. I'm getting a really good response to ADT and chemo combined. My PSA is now .3 and it started out at 400.
wow! thats so good! my dad is just 57 now and is contemplating for retirement. Gregg can a chemo patient still work? I am also a doctor but a fresh obgyn graduate, in our case for cancers of the female tract its usually an inpatient chemo. And usually after a 3 cycles patients become weak. My dad really needs his work right now so as to sustain the cost of healthcare.
I'm 59 and still working myself. But I'm self-employed and can take it easier during the first week after infusion. It is difficult to do anything strenuous for the first 3 or 4 days after infusion and getting a little harder now after the 3rd cycle. It really depends on what kind of work he does. Any kind of desk job should be no problem. But the total time for 6 cycles is not that much, 18 weeks and 2/3 of that time I can function normally for the most part. There are lots of people that work while doing chemo. I believe there is at least one post on this subject if you do a search.
thank you Gregg your insights, they gave me hope!
All I can do is agree with Greg. He's on the button.
I am 55, but was diagnosed at 54 (stage 4, bone mets, Gleason 8, PSA 227 at diagnosis). I still work full time (still fly all over the country, running offices in 3 cities and supporting customers all over the US). While all cases are different (your age and general health are big considerations), you can definitely keep working. I had my chemo on Wednesdays and then usually worked from home Thursday and Friday, and was back on the road or at the office by Monday. I found that the chemo made me feel a bit like a mild flu for a few days, which is why I planned to feel 'sick' over the weekend. For me it was not at all as bad as I was expecting. Exercise is important to combat fatigue - you need to force yourself to walk.
I'm still working full time (still in Lupron, too) almost 2 years after my 6 rounds of chemo. And my PSA dropped to <1 post chemo. You can definitely do it!
Hope this helps your dad.
Hi James! Your response gave my dad hope. If in case we will go thru chemo then he is less scared right now. Thank you for giving us courage to face it. I also hope the best of luck for you. 🙂
Hanna
I did 10 cycles of chemo (Docetaxel) also without problems. I was then given 5 months break - except for Zoladex - before Zytiga. Great results from chemo and for me Zytiga has dug in beautifully to bring PSA to 0.030. Onco had considered Xtandi but knew Z showed greater promise with chemo. Good luck and God Bless.
thank you scruffybut1, its such a help that im reading a lot of personal experiences here. Godbless you too..
Truthfully we never know what will work for us, I was heavily pretreated with Ketoconazole before zytiga was approved and told it was not likely to get a good response after ketoconazole as they were similar with possible cross resistance, yet I got a good response to zytiga for 2 years, then with steady increases I switched to xtandi and got another 2 years. Because we never know what will work and such limited options, I think it is important to try everything, You may be able to get a break from the company that makes xtandi , I think that is income based , but many have done it. I am now on chemo, I go in the morning, I feared it for so long , but for me it has been a non event really, I wished I had done it sooner , using countermeasures to avoid side effects like constipation , neuropathy, and several other issue, I was fortunate, it to is working for me, some men do have really bad side effects, if he does it post again and ask how to avoid side effects, and some do with xtandi too . After 7 cycles my hair is now growing back in, while on chemo, I go for 8th in the morning. dx 2006 at age 49, Gleason 10, bpsa148,stage 4 at dx with widespread metastatic disease, given a year to live over 11 years ago .I have known many who worked through chemo, If he retired would he still have his health insurance? Xtandi is I think 12,000 USD in states, How much is it there.Zytiga is just a bit less than xtandi here.
We are all here for you, Never give up.
Dan
Dan you have been very lucky indeed! I wish that for my father too! Yes my dad doesnt wanna undergo chemo, maybe because of the connotation that he will lose hair, he will feel sick etc. But as a medical practitioner I still encourage him. Price of Xtandi here is a whopping 380,000 pesos per month, which is quite costly given that we are only in a middle income family. Zytiga was a financial drainer. Here in the Philippines, we can only resly so much on the government subsidy on cancer meds. You are lucky that your country has a good healthcare insurance. My dad has no health insurance. When my dad decides to retire then we would have no means of acquiring such expensive medications. Thats why im looking for cheaper options, maybe Canadian pharmacies that offer Xtandi on a much lower price.
This disease had made such impact on my family, emotionally and ofcourse financially, this is so sad knowing that my father wont be able to fully enjoy his retirement. luckily ive come across this community and you guys add a spark of hope.
Hanna,
I am so glad you are seeking financial assistance from xtandi, I hope you get ,if not keep in mind that a mere 7 years ago before zytiga and xtandi were approved ketoconazole with HC was the main drug used in this space, after casodex or nilandron. Keto is take 3 times a day with fasting and cost about 12 dollars a day, many of us had good responses to keto, sciencedirect.com/science/a... also in this space was DES, Des caused some blood clots in some and required anticoagulation , originally used as 5 mg daily, the lower dose was shown by Glode to be nearly as effective with much lower risk of clots, DES is 200 dollars a yearAmerican and must be compounded. sciencedirect.com/science/a...
In regards to hair loss during chemo some have reported retaining their hair using elastogel frozen helmut sold by elastogel , I did not use it and hair is growing back in my original color (no grey) while still on chemo after my 6th cycle, currently going for 8th cyce in a few hours, I also use gel ice to rest my feet on during infusion to prevent neuropathy, and soak finger in ice cubes alos suck on ice cubes I bring, soaking fingernails can prevent nails from coming off ans sucking ice cubes to prevent mouth sores and save taste buds. Clearly xtandi is the preferred drug for many reasons including ease of use, pharmacycheckerblog.com/xta... I wish you both the best, He is so lucky to have you as a MD to advocate for him
Dan
I wish I knew how to send a winzip of the long time HRPCA group with studies proven treatments compiled from the men who went before us, before they went offline ,until then paste On DES studies Suggested Dose Options
There is an abundance of information indicating that 5 mg is too high a dose given the side effects and that lower doses have similar efficacy against prostate cancer with a lower toxic profile. The 5mg/day dose results in castrate levels of testosterone as does the 3mg/day dose. A dose of 1mg/day is not sufficient to reduce serum testosterone to castrate levels in all patients. However, the 1mg/day and 3mg/day doses have equivalent effects on prostate cancer.(6)
Jazieh AR, et al(7) used a dose of 1mg 3x/day along with routine anticoagulation with warfarin (Coumadin). The 14 men in this study were post-orchiectomy with progressive prostate cancer (AIPC)(small sample size). Nine of 14 had PSA declines > 75% from baseline PSA and there were no cardiovascular or thrombotic events reported. Smith, et al(6) found that 1 of the 21 hrpc men in their study with 1 mg DES had a DVT.
The choice seems to be 1 mg/day or 1 mg 3x/day. One could start with 1mg/day and if that lowered your PSA continue, if not, increase the dose to 1mg 3x/day. Discuss the options carefully with your doctor and consider anti-coagulation with coumadin.
Study dose and anticoagulant psa response TTP
Jazieh et al(7) 14 1, 3x/day + coumadin 64% >75% PSA↓ 8(2-24+)
Shahidi et al(10) 127 1 + 75mg aspirin 26.1 ≥ 50% PSA↓
Shahidi et al(1) 115 3 + 75mg aspirin 32.4 ≥ 50% PSA
Smith et al(6) 21 1 43(22-64) ≥ 50% PSA↓
Rosenbaum et al (12). . 18 1, 3x/day or 2 2x/day + 100mg aspirin 66% psa r7.5mo.(5-36 ttp
Hi Dan. Wow. I am quite amazed how you know so much about PCa. I wish my dad has the same insight and attitude as you! Because your spirit healed you! I will pray for you and for all the patients here. All that you have suggested im reading it all. And now, I think I also know PCa better because of you wonderful people. And thank you also for giving your time. I conclude that help is really there when you need it, you just have to ask.
Hanna
Hi Hanna, I was on Lupron for some time and then my PSA starting drifting up. The cancer medical group that I am involved with here in central Florida helped me get Xtandi through the manufacturer. They have a program depending on income level that they will provide the Xtandi free of charge. I had to pay $600 up front but got the Xtandi at no charge after that. They would send it to my home at no charge. It worked for a while but then I had to go to Zytiga and now I am on Taxotere (on the 5th treatment). I know that Xtandi and Zytiga has been very effective for other patients and I would recommend contacting the manufacturer or your health insurance provider.
Good Luck and God Bless,
Lou
hello Lou! Thank you for sharing your experience. We came home from our checkup with the Onc and he gave us 2 options: Xtandi or Chemo. My dad chose Xtandi. So we are here now contacting the manufacturer to get out hands on the drug without breaking the bank. You are indeed lucky to live in a country where it could come free. Whereas here in the Philippines there is limited resources. But I am still praying and hoping for the best for my dad. He is such a kind and generous person and I want him to live longer to attend my wedding and possibly meet his grandkids. thank you again Lou.
Hanna
My husband mike took Zytiga & xtandi & provenge - quite expensive in the US - did not work for Mike - he took zytiga for 4 months -over $4,000 in the US For 4 months of Zytiga- now on jevtana chemo.
I wish you the best - maybe some of these drugs will work for you- Mike's prostate cancer went to his lymph nodes
hi PennySue. From what I've read from here it was really a tricky disease and there is no hard and fast rule about what to take. But I still believe that God is with us all. I still am hoping that the patients will live through the battles. best of luck to your husband 🙂
I took Zytiga for 2 years. Had focused radiation when PSA rose on Zytiga. Did Provenge protocol. Been on Xtandi for over 3 years now. PSA undetectable. Manufacturer fully covered the cost. Simple form. You can have it home delivered, I used to get mine delivered that way. I now have it delivered to my local pharmacy and pick it up at my leisure rather than have to wait around the house for it. Good luck.
wow David how did the manufacturer fully covered the cost of the meds? Are you from the UK? or is it covered by insurance?
Covered by Astellas. Simple form. I'm retired in the USA and on Social Security. Based on income and availability. Before that I was covered for a number of years by PAN, Patient Access Network. Social Security paid for it other Than the Co-pay. Pan picked up the co-pay which was like $400 a month. I paid $40.
Kamusta ka?
This is a bit off the subject but I know that one treatment/injection of Keytruda (pembrolizumab) here in the U.S. is $30,000.00 while in the Pinnes it's $10,000.00. Go figure!
Good Health and Good Luck to your Tatay et al.
sige na.
j-o-h-n Wednesday 07/05/2017 1:05 PM EST
Kamusta kabayan! I am not aware of the Keytruda injection but why the discrepancy??
Anyway, yes my tatay is still fighting though there are times he is really worried about us. Sabi ko nga sa kanya dont worry about us because we are all adults now and we can take care pf ourselves. Alam mo naman pag Pinoy, doesnt want to buy meds, he doesnt want to drain his retirement fund.
Hanna
Hello HannaMD
My wife is Pinay. Why the discrepancy? Who knows.... Your Dad seems like a typical Pinoy, who lives for his children. Keep telling him that you want him to walk you down the aisle and to be your yiayia for your children. I know it's almost impossible to lay out $7,600 a month for meds. Can you get him into a clinical trial? I wish your Dad and your entire family the best and I'll keep him in my prayers.
j-o-h-n Wednesday 07/05/2017 10:02 PM EST
haha i almost thought you are Pinoy. Looks like your pinay wife made you one! Anyway, yup, Pinoys are like that. Runs in the blood. Parents live for their kids and kids live for their parents. Yes we are still fighting and he is still standing. We are currently asking for a govt financial assistance now but i think it would take time for it to get approved (system sucks). But all for the best and hope is still up. Regards to your Pinay wife 🙂
Salamat po.
MY wife is very very nice (a sweetheart) however she's the boss and I'm the horse. She's very smart, she went to Manila Science High School and then to U.P., the only dumb thing she did was marry me.
Regards and hope you can get the meds for you Dad.
j-o-h-n Thursday July 6, 2017 6:23 PM EST
Hi HannaMD! I was doing a research on Xtandi when I came across this post. Our family is going through the same thing now and I've been educating myself more about PCa treatment and what else we can do. The latest post here was already a year old. How's your dad? What treatment did you go with? I hope to hear more from you soon.
Hi Iyagrrrl. My dad had 2 years with Zytiga and 3 months on Xtandi then the psa rose again. We already did chemo with Docetaxel for 6 cycles in divided doses and the psa is on a plateau. He again had Zytiga for 2 months and now had liver mets. The med onco and the uro onco is now looking on starting him again on chemo (Docetaxel since we cant afford Cabazitaxel) on higher doses than before. We will start his chemo this week and i hope this works. Actually im losing hope now. He already has liver enlargement and is having a hard time eating due to early fullness sensation.
I feel you. I really do. But let’s not lose hope. I’m really glad I stumbled upon this community. We may not know whether or not, or how these meds will work, but what’s important is that we continue to fight. Thank you for sharing your story. Our journey has just started and I learned a lot just by reading this thread. I will be praying for your dad and your family. Hang in there! We’re all in this together.
Where do you buy zytiga at low cost here in the phil? Pls help
hi! You can ask assistance from PCSO and then they will give you assistance of at least half the cost of zytiga...
Hello HannaMD, I have a box of Xtandi, I am selling it.... is your Dad is still in need of Xtandi...
I have purchased expensive meds from Canadian pharmacy in British Columbia. Their prices are 50 percent of United States prices. Highly recommend. Good luck
You might try to contact Xtandi,they do have a assistance program,I didn’t qualify,but who knows. Mine was $10,000 per month but was lucky enough to have a good supplement that dropped it to $600 a month after the deductible of $10k. Who knows he might get it free .
Hello Larry, may I ask what the supplement was?
Humana is the one we chose, working good for us so far
Good day,
is there anybody in this thread who is still in need of Xtandi (Enzalutamide)? I have a box of Xtandi (40 mg @ 120 capsules) any one who needs it? I can give it half the prize in the philippine market.... bought the meds in Canada...
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