My husband left his phone at home this morning. When it rang 20 minutes ago I knew it was the hospital ringing back with his latest PSA results. My husband's results were from last November to now: 5, 10, 11, 7 and now a shocking 89. I could feel the shock but didn't show it much to the doctor. He knows me so it was okay for me to ask questions. I asked him what the next steps were going to be. He said they have my husband down for a CT scan and a bone scan. Then I asked what the next thing would be after that. He said the only option would be Chemo. I asked him what drug they are going to use. He said they are going to use Docetaxe. He wanted to know if I knew what my husband thinks about Chemo. I said he was afraid to use it mainly because of issues with nausea. The doctor replied that with this drug people don't get nausea. Then I said I would let my husband know and we ended the conversation.
I am crying while I am writing this to you. It seems like the dreaded day, the day when we have to think about what to do, has come. And the only therapy option that they have to offer us is Chemotherapy. What if it doesn't work? What if it makes things worse? And, somehow, I am thinking: Doesn't all this mean that I will lose my husband soon?
Sorry for being so negative. I know I am not normally. But this is just so frightening.
Any thoughts/comments/ideas?
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MelaniePaul
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So sorry for your news. We are all praying for you and your husband.
Can you provide other information about your husband's condition? How long has his PSA been elevated? Has he been on hormone therapy (ADT)? How old is he and what is his general health condition? Does he have any known cancer metastasis- in his bones or lymph nodes?
I know that with this additional information you will get excellent advice from friends in this site.
As for me, I have had 6 rounds of chemo a couple of years ago. Surprisingly it's not as bad as I expected. Like getting yourself mentally prepared for 6 rounds of a mild flu. Drink lots of water. Exercise (walk) every day whether or not you want to. And make sure you put your fingernails and toes and balls of your feet on ice while they are administering the drug. This is to counter the risk of neuropathy. It takes about an hour to 90-min. And you don't actually feel bad for a day or two. My wife and I would actually go out and eat after each treatment. 😊
Most importantly, don't lose hope. There are a lot of options out there. Make sure you have an oncologist who specializes in prostate cancer. Treatments are developing rapidly and you want a doctor who is up on the latest developments.
Look for more insight when you update us on the details of your husband's condition.
So sorry. I hate that phone call. Please know that we are all pulling for you. Please ask about hormonal therapy. If that is possible, please ask if the Stampede therapy is an option. There was another person on this sight in a similar position that we suggested the Stampede trial. My doctor just put me on it. As it just came out this month, your doctor may not have heard about it. If so, you may want to discuss it with them
Sorry for not having provided more information before. It was kind of silly of me to assume that everyone in this forum would remember my husband and what we told you when we first joined this forum. I suppose I was just feeling so desperate yesterday that my focus was very narrow.
So here goes:
My husband was diagnosed in 2003. He had radiation for two months. Since then, he has been on hormone treatments of various types, all either injections every three months or every six months. Everything was going well for a good while until, in summer and autumn of 2013, his PSA went up and scans showed that the cancer had spread to the bones and lymph nodes. His PSA was at 250 in early summer of 2014. The oncologists suggested Chemotherapy to him, which he didn't want at the time. His oncologist from back then referred him to the oncologist we have now, Mr. Ray McDermott, who suggested to continue with hormone therapy and to add Aberaterone. My husband's PSA went very quickly down from 250 to 50 and was then almost stable at 0.2 and 0.3 for two years and the CT scans and bone scans showed that there was no more tumor growth and that, in fact, some of the cancer in his bones seemed to have "healed". Last July, the PSA started to go up again. From September to now it went: 0.3 to 3, to 5, to 10, to 11, then suddenly back to 10, even further back to 7, up to 27 and is now at 89.
My husband says he has a "PSA feeling", by which he means that he feels slight nausea all the time, particularly when he is exhausted, along with headaches and loss of apetite and a general feeling of illness. He remembers and recognizes that feeling from that time when his PSA shot up so much in 2013/2014.
As for his general health, my husband is healthy - kidney and liver function normal, no heart-problems and no other illnesses. He is 1.86 cm and only weighs 60 kg; so he is very underweight. To me he seems to be getting more tired and weaker. I sometimes think that it must be hard for the body to cope with all this while it is all the time deprived of Testosterone.
I suppose we knew that this time would come where we would have to decide what to do next. In fact, we were at the same point in March and April of this year - and it was then that we joined this forum. That was when my husband's PSA had gone up slightly and we thought it would be best to start looking at alternative treatments. However, if the recent PSA is anything to go by, this decision seems to have to be made sooner than we expected because it has shot up quite a bit.
I would be so grateful if people in this forum could tell us what they think, and maybe share the experiences they have.
Just to note Stampede trial been running for years, papers just presented in USA. I have been on similar as my Onco one of those who developed treatment approach. It's worked great for me. Believe Charted is an American approach that is similar. Hit cancer hard and fast.
Some men can benefit from changing from abiraterone to enzalutamide, so it's worth asking about that. Xofigo (radium 223) is also worth a conversation. It might also be possible to join a trial before chemo, so be sure to ask about those. As for chemo, hopefully James' experience is encouraging to you. All my best thought out to you today.
Thanks for sharing your thoughts. I have taken a note of the questions to ask.
Just one thing: We were told by our Oncologist that Xofigo (radium 223) wouldn't really be worth trying as it only works in about 20 % of cases where Aberaterone has stopped working? Would you say that is correct; I mean, have you heard the same thing?
I think above you are referring to xofigo as xtandi, when you say it only works after zytiga in 20%, We never know what will work for any of us, I do not believe that 20% figure for a second, I was heavily pretreated with what was used before zytiga called ketoconazole , And they said it was not likely I would respond to zytiga after keto, yet I got a good response for over a year and after that I also got a good response to xtandi, so one never knows . For 10 years I dreaded the thought of doing chemo, , Now I have done 7 cycles and getting a response and except for hair thinning, it has been a non event, again not sure this would be same for your husband as we are all different. In the old days we went with the lesser toxic treatment first and in this case I think xtandi qualifies as the lesser of chemo and xtandi, It is worth a try. Xofigo on the other hand is a injectable radiopharmaceutical that relieves bone bone, but as I understand does not do much for psa. . enzalutamide is xtandi, abiriaterone is zytiga , and xofigo is radium 233.
Dan, thank zou for clarifying all that. I think I am getting a bit mixed up with all the different drug names and brand names. I have written it all down now! Thanks.
I am in the 2nd week of my 2nd round of Chemo (3 weeks between rounds). I am getting both Docetaxal and Carboplatin. I have numerous bone mets, spine,ribs, pelves, etc, plus liver and lymph node mets. I just completed 19 fractions of radiation for Spinal compression pain, just before the start of the first round of chemo. If you go to my profile, you should see other details of my 5 year battle. I did my first round of chemo, 4 weeks ago, The fatigue was overwhelming on days 2 thru 7. Plus I had nausea and dry heaves thruout the three weeks, while taking odansetron. The 2nd round, the docetaxol was reduced from 60mm/m2 to 50mm/m2 (your Oncologist will understand this, though the info is available if you search). The good news, is the fatigue was reduced to tolerable levels. Get up for 10-30 minutes, then rest for 1-2 hours, repeat. Still had some dry heaves, and yesterday morning, the Oncological nurse suggested trying ginger. My wife picked up pickled ginger, at a Sushi counter, at the local grocery and I've been taking since yesterday and my nausea is better and no dry heaves, Two days is not enough to judge, but seems to be working so far. My other problem is lightheadedness. They keep telling me, I am not hydrated enough. I try to drink 2-4 liters/day of fluids. Not sure yet if it will help. Fortunately, my PSA dropped from 43 to 6 after 1st round, hope I am one of the lucky ones who responds well to the chemo, next two rounds will tell. Also 90% of my hair fell out, but that is of minor consequence.
I have read everyone else's replies and agree with all of them. Xtandi can be worth a try. It may not do any good, but it may. There are men who have gotten several years from Xtandi after Zytiga failed.
Chemo can be very hard to take or very easy - depending on the dose, the concomitant treatments, and the individual person's reaction. There are some pretty powerful anti-nausea medications and even a small reduction in chemo dose can make a difference. Some docs will give very small doses of docetaxel every week instead of large doses every three weeks, and some men who had problems with the larger doses breezed through the weekly treatments. Ask the oncologist about that.
One thing I was taught about chemotherapy is that it attacks rapidly dividing cells particularly well. It works by interrupting cell division. That can mean that an aggressive rise in PSA in a short time might actually indicate that the chemo will work well. There are no guarantees, but it might do a very good job.
I hope that your husband does not give in to despair and gets what he can from the chemo, from Xtandi, and has a look at clinical trials. He might benefit from a genetic analysis of his tumors which can tell him if some "targeted therapies" like olaparib can be of help. Most men don't have the genetic variations that enable that drug to work but, for the ones that do, it can be a powerful treatment. The same may be true of Keytruda.
This is exactly the problem: Everyone responds differently to every treatment, so there is absolutely no guarantee anywhere - a situation that for myself as a control-freak is very hard to take
It will be interesting to see what the scans show and what the oncologist suggests. And, like you, I think that we should give other drugs a try before Chemo. And then the Chemo mightn't be too bad.
"Since PCa is generally slow growing why does Chemo work?"
Good question. For a long time it was thought that chemo doesn't work for prostate cancer, perhaps because it is too slow growing. There are some PCa patients for whom chemo hardly works at all and, IIRC, the original trials in people who were castration resistant that resulted in docetaxel being recommended for PCa only found an average life extension benefit of 2.5 months - though there was reduction of pain.
One difference between now and then is that chemo is being used earlier and often while ADT is still effective and in use. Perhaps chemo works on a different cell population from ADT. Perhaps the ADT resistant tumor cells are in the more active part of the tumor population and so more damaged by chemo. Or perhaps the damage done to the tumor cells by chemo, in combination with the damage done by ADT is more long lasting than chemo alone, resulting in some tumor cell deaths during cell division even after the chemo itself has been eliminated from the body.
That's all pure speculation. I suspect that early chemo is now recommended, not because it's mechanism of action is well understood, but because the empirical evidence in clinical trials shows that it works. No doubt there are scientists even now who are trying to find out why, perhaps learning things that will make it more effective.
Here's the description of the "Mechanism of action" of the drug:
"Docetaxel is an antineoplastic agent that acts by disrupting the microtubular network in cells that is essential for mitotic and interphase cellular functions. Docetaxel binds to free tubulin and promotes the assembly of tubulin into stable microtubules while simultaneously inhibiting their disassembly. This leads to the production of microtubule bundles without normal function and to the stabilization of microtubules, which results in the inhibition of mitosis in cells. Docetaxel's binding to microtubules does not alter the number of protofilaments in the bound microtubules, a feature which differs from most spindle poisons currently in clinical use."
That looks like it interrupts cell division ("mitosis") causing cell death, but maybe the effect lasts longer than just while the chemo is still in the body. Or maybe the inhibition of microtubule disassembly has other more long lasting effects.
I feel for you and your husband, you are both in my prayers... I'll tell you a little about my husband. He got 1.5 years out of Zytiga. Then did chemo( docetaxel) every 2 weeks for 6 months which brought his PSA down and then started Xtandi. He has just completed 2 years on this and is still going strong, PSA lowest it has been in 2 years. So there is hope out there..
Hi. That is very encouraging what you say about your husband. I pray for you that it will continue to work for him and that you will have many more wonderful years together.
I recall writing earlier to you about my experiences in particular with chemo, Docetaxel. I had 10 cycles without problems. No nausea, these days that is essentially eliminated with steroids. My chemo took 8 months and I walked 2/3 miles after each treatment, had my evening meal and walked my Saluki for another hour or two. No heavy exercise just enough to keep body and lungs active. I know only too well about 'old' versions of chemo. My mother died 21 years ago and suffered. I did not. Good luck and God Bless.
One simple thing I almost forgot. Every month on Zoladex, chemo, now Abiraterone too I had PSA plus full blood count on which the following month of treatment was/is based. The FBC picked up minute changes and we looked for rationale of changes. The hospital worked through them, I went through them with my GP, a diabetic specialist, plus a copy for my dentist, opthalmologist etc. You husband should get similar. It is very reassuring.
Don't be so negative. Chemo is no fun but your husband may need to do it. I will be taking my tenth chemo treatment (Docetaxel and Carboplatin) next week. Nausea is a problem but I am given a drug to help that. Hair and nails also are problems. I am putting my hands and feet in ice when I take the Docetaxel in an effort to minimize nail problems. I am resolved to going bald so I don't worry about that but others I understand try ice to prevent hair loss. Loss of taste is most annoying, I am told just use a lot of salt and spices.
My onc has told me I will be on chemo till it no longer works. Hopefully that will be long enough till something better comes along. I can only hope that with all the new innovations in cancer drugs that that day comes along before the chemo stops working.
Chemo had very little effect on me as far as getting sick afterwards. I took care of a little nausea I got the last couple weeks with CBD ( hemp oil ). If your not familiar with hemp oil see ( hemplifetoday.com ) on the internet. They list types and prices there. If you try this start with 50 mg and go up from there if needed.
Best of luck my prayers are with you and your husband.
So sorry about Paul's progression. I didn't see your email until just now, & it's wonderful that people have given you such valuable information.
You might want to do a little internet research on whether it's strictly CBD or also other cannabinoids that combat nausea--at least if you can get some preferably medical cannabis that would give you both CBD & other cannabinoids. If you have a good "menu" available, you could read about whether just a smoke works fine (that's my impression) or whether an oil, tincture or spray is superior.
I was just told by a highly trained & experienced expert, a urologic oncologist, that since I've reacted well to previous meds, I'm likely to react well to Xtandi (enzalutamide)--& thus I can disregard the 20-something percent stat. I recently completed almost 3 years on Zytiga (abiraterone). I'm receiving Provenge now, & Xtandi will be next. Rad-223 will be an option if I don't have more than minimal soft tissue disease.
I started this journey in 2003 with an RP, then EBRT in 2004 & Lupron in 2007. There was no early-stage chemo then. So my doctors & I are still looking at chemo as being last. It's good to read what people had to tell you here about chemo. Congrats on drawing such a wonderful & highly useful set of responses.
It always makes me feel very good to read your posts because I know that Paul's and your journey have been so similar so far - well, with the exception that you are on Provenge now and Paul is not. And you even live in a place with the same name, although it is a different part of the world
Yes, indeed, the posts from this forum are so so important and I really appreciate people taking the time to read my posts and replying with all their knowledge from mostly first-hand experience. That means so much.
After having read all posts carefully and after having done our own researches, we have decided to either go with Chemotherapy or with Xtandi depending on what the scans show. If the progression of Paul's illness is very strong, if there are a lot of new mets, then we would want to go with Chemotherapy, whereas, if there is not much change to the last scan, we would like to try Xtandi first. As for LU177, we simply can't afford it, so maybe this can be an option for much further down the line when it will hopefully have become available here as well.
It is amazing what simply having a little bit more hope can do. Today Paul has been feeling a lot better compared to the last couple of days. This particular "PSA"-feeling isn't gone, but he feels a lot stronger and I can tell that he is in better spirits.
He always reads all the posts here too. I always ask him to read them because I want us both to be informed in the same way. I think he, too, gets a lot out of being in touch with you all, although he is not writing here himself.
LU177 trials are underway in US now. I know of one clinic in Houston that's doing it.
I just did my 4th cycle of chemo last Friday. I've had some mild nausea and lower then usual energy during the first week. But other than that, it's been fairly easy. Most people tolerate the side effects of Taxotere chemo well and there are effective meds for the nausea. I haven't even needed them so far.
One important thing to keep in mind is not to just focus on the side effects. When the side effects of each cycle begin to subside after the first week, you start feeling better and with each cycle the second 2 weeks is better than the cycle before. Yes it's a bit difficult during the first week, but then 2 good weeks follow. And when you start seeing that you are getting better, mentally it makes it easier for you. That's been my experience.
Gregg, that is a very good point about the side-effects, I think. I do believe that we are focussing on them too much and don't look at the good the treatment does, although it may be hard at the time.
Thank you and good luck of course to you and your treatment!
I sincerely thank everyone who has replied to our post so far.
After having read all the posts here and after having done research ourselves, we see Paul's further treatment options either in docetaxel or in Xtandi or in a combination of both. I suppose which one to try first depends on the severity of the tumor growth.
Our appointment is on 11 July. Before that - next weekend - we are going to the Aran Islands for a couple of days. And one day after the appointment with the oncologist we are going to Germany for two weeks - well, unless, of course, the oncologists suggests that we start treatment right away.
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