Out of curiosity: my husband is an exceptionally healthy, high performance status, zero medications and no comirbidities prior to stage 4 pc diagnosis and firmagon
And we will likely be advised to do chemo. He has lymph node involvement. Multiple lymph nodes, and some suspected outside the pelvis which we will confirm or disconfirm with psma scan.
Anybody survive chemo and get worthwhile results at his age or beyond? If so, please share your story.
Love to all of you out there.
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Dachshundlove
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Thank you Bill68. There is so much conflicting information about everything— makes the decision making daunting.
😊
I did chemo at 59 so I am younger, but I suspect he will be fine. Most people tolerate this chemo well. Most of us get scared when we hear the word "chemo" but there is a range of difficulty levels as far as side effects go. If it's Docetaxel or Cabazitaxel, It is on the more tolerable end of the spectrum. I know it's easy to say, but don't worry, especially if he is healthy and has good blood numbers.
I'd rather go through a cycle of chemo than my last bout of the flu or the Norovirus I came down with before that. I never threw up once with chemo.
It's interesting when people think about chemo, they often only think about the side effects. It actually does kill the cancer too and often provides pain relief. I remember when I was doing chemo, I felt lousy for the first 5-7 days then improved. After each cycle, the period after the first week was better and better as I went along. I also had an improvement with my pain until I was completely pain free.
So you have to remember why you are doing it too. Someone on another forum wrote: "Chemo's a bitch, and then you live."
I can only speak for myself when I say it was well worth it. I do plan to take it again if/when it will help me.
My husband was 62 when he did Chemo, and came through it all with very little side effect. Just a little more tired, bit of neuropathy in feet and hands, feet are ok now. Wore a cool cap so didn't loose hair. No sickness, lost taste buds but ok now, finished his chemo end Jan, 4 wks later on holiday in Goa.
OC said that it had done its job, so would do it again if needed.
Of course every one is different but my husband stage 4 GL9, with lymph node involved, had to hit it fast and hard.
Thank you for sharing your experience with chemo. This is a rough process (understatement) and only spouses going through it (or who have been though it) can understand how life changing it is.
I appreciate your time and input. Wishing your husband continued success in treatment and sending you both light and love.
I'm only 51, but tolerated chemo rather well, though it did get rough in the last couple cycles. I stayed active throughout, but my runs had gradually turned into walks by the end.
I'm not quite 3 months since my last infusion and doing well. I'm not what I used to be, but am doing better than I was in the weeks leading up to diagnosis, and can safely say that the treatment isn't as bad as the disease.
For me, and everyone is different, the Cabazitaxel (Jevtana) worked better with fewer side-effects than the Dosetaxel...if Neulasta is part of the deal, it's side-effects were just as bad as the chemo...But considering what is at stake here, the side-effects were tolerable...
Thank you Nalakrats. I’m having hard day with all of this and like everything In life, the more we know, the less we understand.
It’s helpful to hear about a 93 year old who made it that far. I wonder what the percentages are for stage 4 guy’s diagnosed today? I wonder how many make it 10 years? I’ve read that maybe 1/2 make it 5 years.
In the meantime, we could be hit by a bus. And, life is terminal...
Do you have any thoughts on immunology in India like the APCEDEN? I was thinking it might be fun to go to India because we haven’t been and that might be a great excuse.
I have not had chemo but, based on my reading, I'd recommend it. The combination of chemo + ADT has been shown to extend life very significantly beyond separate ADT followed by chemo after the ADT stops working. The big LATITUDE and CHAARTED trials both confirmed that.
As for the side effects, I would ask the oncologist about using ice packs not only on the head, but also the hands, feet, and mouth to prevent or reduce peripheral neuropathy and loss of taste buds. Unless he thinks your husband might have significant prostate cancer in the head, hands, feet, or mouth, I think it's a good idea to slow down the chemo in those areas. Some docs also recommend Neulasta to reduce the risk of infection. It seems like you have to bring these subjects up with the docs because an awful lot of them don't seem to think enough about side effects.
Chemo is given over as many as ten sessions, three weeks apart (or smaller doses for 20 or 30 sessions two or one weeks apart.) If worst comes to worst and the side effects are intolerable, your husband can quit without getting the full set of infusions.
A lot of men here have benefited from chemo. I think it's worth a try.
Here is one caveat to my statement about chemo. A study was published that found no benefit to adding chemo to ADT in non-metastatic prostate cancer. See: practiceupdate.com/c/79235/...
So chemo was confirmed to be of very significant help with metastatic disease in two very large studies. In the above referenced smaller study of non-metastatic men, no benefit was observed.
We never know whether a particular patient will benefit, and it's very hard, even for experts, to know from reading an abstract whether a study was well designed and implemented or not. But, for whatever it's worth, the study referenced above did not find benefit for non-metastatic patients.
Thank you for the info. It seems like it can be beneficial and it may be the right direction for us. I wish we had a crystal ball, it would be easier to make decisions.
I'm 75 and finished the 6 cycles of Docetaxel in late January this year (with ongoing ADT). When diagnosed in July 2018 my PSA was 152 and now is 0.07. My last bone scan recorded" significant interval reduction in osteoblastic activity of the previously demonstrated widespread skeletal metastases."
I had some very unpleasant effects from the Docetaxel - severe constipation and a couple of sleepless nights with back and leg pain. Plus the usual hair loss and damaged nails. But the end results were well worth what in the greater scheme of things wasn't much more than inconvenience. Surprisingly I found the last 2 of the docetaxel treatments were the easiest of the lot.
Dad got 7 infusions of Docetaxel last year at 65y and took it decently well, side effects were there but it wasn't the end of the world. Like your husband he had lymph node involvement only and was (still is) very healthy without any comirbidities.
I am 70 and I should have started the chemo quicker, as it actually benefitted me. The end result was that it wasn’t effective for a long time. I changed from Taxotere to Yevtana, but only worked a few cycles. Hang in there and stay positive.
My husband will be 70 in August and has just had his 4th (out of 6) round of chemo. He has tolerated it reasonably well - some pain and tiredness but no hair loss or nausea (not yet anyway). Hope all goes well for you.
Yes, I had 5 x Docetaxel. My oncologist said before the start that because I had so many bone mets it probably would not work well and Psa may go up, not down.
I was regularly cycling 200km a week prior to chemo, so I was regarded as the fittest stage 4 cancer patient at the hospital, Psa only 12, after Zytiga + ADT failed, Psa went to 36, which did not indicate it would work, and I needed Neulasta to boost my white cells but after first horrid week of chemo 1 I cycled everyday at least 5km for the 15 weeks, with increasing cycling distance after first 8 days of each chemo cycle. Psa settled at 26, then doubled to 50 by No 5 chemo but decision that it had failed was made after 4th chemo with Psa at 40+, and LU177 was booked, and I had 4 x Lu177 shots and Psa is now 1.6,
Chemo seemed to do very little, just as the doctor said. I saw other men who had immediate Psa reduction from 40 to 2 after 2 chemo shots, then Psa levelled then rose to 40 after 10 shots, and that's enough to cause all hair and finger and toe nails to fall out plus make you have tingly feet, a dragging gait, and these effects can linger for years. Some men are allergic to chemo. Cabazataxel, a chemo cousin of Docetaxel is thought to work better. I did not want to try it because I read about worse side effects and little better outcomes.
After No 2 Lu177, and before No Lu177, I was cycling up to 300km a week.
But then I got right hip pain because of combined inflammation of hip joint by Pca mets in femur and pelvis, and cartilage in hip may have failed due to weakening caused by initial EBRT in 2010. I've stopped cycling 200km a week.
Luckily, I have other things to do and I don't like sitting still feeling sorry about the situation. I need to fit enough to mow lawns and clip hedges, but I may have to employ a man for that soon.
I am now on Xtandi and wait and see what happens to Psa over next 8 weeks.
But as long as I don't put on weight by eating too much, which is The Only Way anyone can put on weight, then I'll survive not doing much exercise. Many will blame a drug for causing weight gain. No, wrong, cut your food down, use electronic scales daily, and often even in winter you will find your weight will be constant with calorie intake of only 1,800 a day. Ignore the BS where ppl say you need 2,400, that's 100cals an hour, and many men can't handle the craving for junk food so its the battle of mind against hunger.
But I'm now 1Kg heavier than when I began umpteen successive cancer treatments, all of which lasted to keep Psa low, but not eliminate the cancer. Lu177 DOES kill cancer; it is not merely cancer supressing agent like ADT, Cosadex, Zytiga, Xtandi although the latter makes Lu177 kill more Pca than if you had Lu177 without Xtandi - in most cases, and a trial of Xtandi + Lu177 is now at St Vincents Hospital in Sydney. Exercise may do SFA to make any treatment more effective. But it keeps your body fitter than otherwise, and keeps your mind saner, and less prone to anxiety and depression.
I hope you find a good path to delaying the inevitable so you may enjoy the wonderments of life for many years.
After chemo, and during Lu177, I grew hair back, only lost a bit of my nails, they grew back, tingly legs and dragging gait got less but am trying to avoid all walking, and save up walkerbility for the time I'll have to limp along to mow grass and clip hedge.
Last week I tried cycling 6km. All went OK and there was no additional hip pain during or after right after the ride or at night. Then2 days later I tried the same thing, and no pain during or right after, but 3 hours later I was near crippled with pain when went out shopping to get more fresh vegetables etc for the next 3-4 days which involves a walk from car to shop. Pain subsided at night, none during the night, OK this morning, so is that due to arthritis or cancer? I doubt it, and something else is wrong in soft tissues that becomes intensely inflamed because maybe it can't repair itself like most things can that are not affected by accumulated radiation.
Of course as we get older and become subject to having various therapies, there can be some strange side effects that are very difficult to diagnose,
and maybe surgeons don't want to ever go near such things because they have to really think about what they do, and there's no time, and a big chance of making things worse. Surgeons like hip joints, preferably on patients who have never had pelvic radiation, and they go in, its all routine, alignment of the prosthetic femur implant and pelvic implant is done with aid of a computer in the room, and in theory its an easy op, although I know a woman who successfully sued the hospital for continued pain after her op because lawyers were able prove insert alignment was all wrong. She had to have it re-done, and is OK now. But finding a tendon causing pains I am getting? Fixing something like this? like looking for needle in haystack but there's a sentence in MRI saying I have a cyst on a main tendon, so I do have a problem but to get any surgeon to understand that is not always achievable. In some ways they are plain dumb.
So its a fight for ability to cycle, and a fight against cancer, and perhaps a fight against arthritis, all at once, and each week I review progress, see docs, have injections, and so it is. I have a wedding of a nephew in September, hard to travel to, so I'll send a present but not attend; it would be a day of pain, and besides, this couple have never once emailed or phoned me to say hello so I'd just be a meaningless decoration.
I'm so glad I didn't spend the huge sum on a wedding 42 years ago. The lady I married vamoosed within 18 mths, so I've never known any support by anyone, and yet I've lived quite well without being married, and its positive to always consider that an outcome could be negative, and happen soon, so you must watch the clock and not dither about, to try to get things positive. Most docs want to help, the number who do outnumber those who don't, because some prejudge old ppl with cancer. Pca is a often a long time chronic illness, not an immediate death sentence like ovarian or pancreatic or melanoma. So with Pca, you can have a good life even though there's a problem. Look at Stephen Hawking, died at 74 and lost all control of all nearly all muscles, but he had a fine mind which pondered our more or less incomprehensible Universe so that we might feel a little less anxious about far bigger things than ourselves, so more humbled, and maybe better to ppl around us.
Stephen looked deeply to the stars, and the more he looked, the more he found it impossible to define God. Its OK if God is not there. But ppl invent what they feel ought to exist for various reasons, all without any evidence they can think about, then this forms the us and them of clans, tribes, nations, and we all deny science and get foolish and have wars.
Getting old allows wisdom, but only if you learn more than you forget each day. But nevertheless, I live in an era of medicine that is vastly better than in 1019, and with Medicare funding for a lot of it. So approach your doctors to explain without whingeing, you want them cheerful, no? explain and question, and laugh when you are wrong and they are right. And if they say to lose weight, then how about it? How to doctors cope with someone who has so many self imposed ills who then expects a doc to fix them up so that can continue their bad habits? But progress has been made, Smoking and boozing rates here have very much been reduced since I was growing up,
but now fructose is causing obesity and propelled by company greed, and I wonder what mental health damage is coming due to kids being addicted to phones and BS from age 3. I used to cheer up the docs when I arrived to see them dressed in lycra. Its 19km to hospital, there'd be a talk and a scrip given, Psa would be up, down, whatever, and I'd continue on another 40km before getting home, and docs thought I was the most healthy stage 4 Pca patient they'd ever seen. I used to cycle to Chemo, and dance with the bag on the pole going to the loo, have them smiling, because the chemo ward was more or less full of ppl who looked uncontrollably gloomy. Alright, if ya gonna die, so what, ya won't be worried afterwards. A chemo nurse said, "Patrick, if you don't have a sense of humour, get out" and I relied, "Oh Darling, I really love you, and will miss you till next time etc, " and that seemed to cheer her up. She looked dishy in her purple chemo clothes and gloves. Chemo didn't work for me. But 6 months later I see this nurse in another ward, and she came over to say hello and she'd got married a month before, and that was one of The Most Cheerful things I heard about in the hospital, so I was all smiles and supportive; I could not marry, she could, wonderful that some ppl can, so, enjoy life while you can.
For us it was the worst thing we ever did my hubby was well until the chemo he got sepis after just three lots of chemo and went down hill after that he passed away this Jan on the 10th but its difficult as its different fot every individual something u and your hubby have to decide good luck in the future xx
My condolences to you and your family. I did not see any posts about your hubby's passing on January 10, 2019. May his memory live on in your heart forever... God Bless.
My husband was 75 when he did chemo (docetaxel). Aside from some fatigue about day 4 after the infusion and some hair loss (not a lot) it was pretty good and definitely together with the ADT had a good effect on PSA - down from 168 to 0.4 .
I would definitely suggest using ice packs on hands and feet to prevent peripheral neuropathy. We believe it works. Start 10 minutes before start of chemo then on for 20 minutes, off for 10 minutes, repeat as often as necessary and keep on for 10 minutes afterwards.
Don’t be worried about doing chemo. The benefits far out way the side effects.
I had a 6 cycle at 3 week intervals course of chemo (docetaxel) in late 2017-early 2018 at age 68 at the Mayo Clinic in Jax. It shouldn’t be a problem for your hubby since he is in otherwise excellent health with no comorbidities. Age is a relative number. There are young 69 year olds, and old 50 year olds. There are some unpleasant side effects that most people who have chemo experience, but they can be managed, and the side effects lessened. Best wishes to him, and to you. 😎
I had chemo at age 55 and in good health except for my Stage 4 dx. I found chemo to be pretty rough, lost hair, finger nail damage, lining of my mouth peeled, aches and pains, fever, chemo brain, flu-like feeling, etc. It was worst the week after the infusion then I gradually felt better until it was time for the next treatment. I had to take Neulasta due to what it did to my immune system. Neulasta caused a lot of bone pain which was somewhat relieved by taking 24 hr. Claritin (nurses recommendation).
Afterwards my immune system took a long time to recover, and still has abnormalities. Dr. Myers had me taking injections of Leukine to help boost immune system which was severely depleted. I also developed neuropathy in my feet and hands which I still suffer from.
The upside is that my PSA has been undetectable for over 4 years now, and I credit chemo along with the other treatments I’m on for that - as well as blessings from God. Knowing my current status would I do it again if I had to redo - absolutely, but for me it was pretty rough, good luck.
Discussion point in addition: So I wonder why... with all the success on docetaxel that they offer Zytiga with Lupron as frontline treatment? It looks like chemo isn't that bad, but Zytiga is now available first.... thats what we picked. When it fails my dad will do chemo, but I hope its effective. I wonder why his doc pushed that instead of chemo? (He was 72 at dx, his PSA is currently undetectable, but still tiny bone Mets, still visible 1 yr in).
It’s why I’m asking here. I don’t understand it, because chemo kills cancer cells and I think (don’t know) Zytiga creates dormancy but doesn’t solve the problem?
I'd failed EBRT + Lucrin ADT, and added Cosadex gave 6 months, Zytiga gave 8 months. I'd read the alarming statistics for failure rates for chemo. Mine failed, Psa went from12 at start to 36, then leveled at 25, then up to 40s, peaked at 50, and having more than 5 chemos seemed futile, and doc had told me that it would probably fail. I had a big mix of many soft tissue mets and countless bone mets.
I then got straight on with Lu177, a month after chemo. But in that month Psa halved to 26, and nobody knew why. I began Lu177 at Psa 26, it stayed constant for 2 shots, but was 5 at no 3. I began enzalutamide after no3, then its now 5 weeks after No 4 shot my Psa is 1.6, maybe a bit lower than Lu177 could have achieved without added enzalutamide. But the last PsMa Ga68 scans told the radiologist that a huge Pca reduction is underway, and continuing. So now I am continuing ADT + enzalutamide. Maybe I get a shot of Ac225 later, or Ra 223,
when inevitably my Pca begins to rise again, which doc expects to happen.
Its happened after all other treatments. I might get Pca biopsy and have analysis and then best drug match to what they find. Its far from over.
Chemo is maybe never going to kill my Pca.
Chemo is said to work on fast dividing cells, so that's why you get a sandpaper mouth as a side effect and effects on all fast dividing cells. But my Pca is a slow grower, so cell dividing is not often, so chemo that lasts in body only 10 days does not to much to slow rate of cell division which is where cancer cells die and new ones are formed. I'd have to be on permanent chemo to get much effect, and side effects would kill me. So that's why there are 3 weeks between chemo doses; its poison, and not targeted to cancer cells.
With Lu177, its targeted with another ligand chemical that makes Lu177 gather wherever there's a tumor, so a small dose is needed and most healthy tissues are not affected by what is a small radiation dose. So what seems to be wanted is a chemical to make chemo gather in concentrations at a tumor and this is effectively equal to raising the dose level for tumours, while lessening it for all or most other healthy cells, and this would make chemo far more effective.
But afaik, chemo is still very primitive treatment with long lasting side effects and damage to immune system that can be lethal if someone gets a big enough infection.
What scans do u do? What do u mean by clean,? particularly for bone Mets which I have under control as per PSA at 0.01 but believe they are there, just dormant. I’m in Abiraterone and Zolodex for nearly 18 months.
What medications/ supplements are u currently taking?
Started chemo and lupron at same time. 59.5 psa started going down at once and was about 7 at 8th chemo treatment. Lupron/Xtandi gradually brought to 0.1 Two years 3 months in. Probably moving to next therapy soon.
My husband was 70, and his MO said that's usually the tipping point. He suggested Xgeva, but after a long discussion, I suggested trying the Docetaxel first. If it was too hard on him, then there was always Xgeva as a plan B. My husband had quite a few side effects (thrush, mouth sores, rashes, edema, low WBC count, hair loss, etc.). After 6 sessions, most everything is gone now other than the edema/lymphedema. His MO decided to give him a slightly lower dose of the Docetaxel ... that might help your husband, too. Post chemo Axium Scan showed that most of the bone mets were gone. Still had areas light up in the prostate, iliac wing and iliac node. So, followed chemo with SBRT (radiation). Next scan in 4 months.
Dachshundlove, this site is such a great resource as well as so very supportive. Keep us informed!
MY story is pretty much like the others. At 64 in 2010 I had 5-cycles (40 weeks) of chemo cocktail containing docetaxel, doxorubicin, adriamycin, ketokonazole, Lupron and a couple of others to mitigate side effects. Was able to continue working part-time, and not debilitating at all. You say your hubby is active and healthy so he should be able to tolerate chemo. PSA came down for a while, but started rising again in 2017 and currently on Zytiga which has kept PSA at bay so far. Go for it if he loves life and want to go on.
Yes, 67 chemo 6 rounds, no problems and good results, Gleason 10, stage 4 with 5 Mets in bone. Been on lupron for 1 and a half years. Only side effect is hot flashes 8 to 10 a day, affected toe nails and hair loss all over, nails recovered and some hair grew back. Feel good, eat good, very limited red meat and excersise daily, still work part time.
Like the others, I have a friend who was diagnosed with stage 4 prostate cancer when he was about 85. And he had some other medical issues. At this very moment, he is on chemo and he is now 90 years old. Has many up days with few down days.
Hi Dachshundlove- I love your 2 dachshunds . I am own by 2 mini dachshunds too . My SO/ best friend just turned 83 years old . His new MO , Dr. Vogelzang, wants him to participate in the Dora program . He will be receiving both radium 223 and chemo . If he won’t qualify for study , he will be on chemo . Other than high blood pressure , his blood test are pretty normal . So age should not be a concern or else I don’t think Vogelzang would recommend it.
Thank you Sharon for your suppportive and acknowledgement of how hard all of this is for the life partners.
We lost a good friend 2 months ago to sudden death (no warning at all) he was 52 and his wife and kids are devastated.
I realize the silver lining of this terrible deal we face is that we get to appreciate our time with our loved ones in a different way, because PC is a reminder of how physical life is fragile and fleeting. I think of our time now as bonus time. If he wants me to walk around a golf course with him (even though I don’t golf) now I say yes, and I walk with him and push his bag. 💛 Trina
I just finished 6 infusions at 73. Minimal side effects. There is some flu like feeling about the 2nd or 3d day after the treatment. Goes away in a couple days.
Note: If you do not want to lose hair, investigate a system called cold caps. Check internet. Also check out info on this site about cold packs for feet and hands.
67 chemo after prostatectomy was supposed to get it all. No defined borders, all margins hot (gleason 9/10) spider web of nerves and veins out of prostate all hot, 2 lymph nodes substantially replaced with G-9/10. Tissue from posterior colon clean but veins and nerves through were G9/10. PSA rose 10 pts 53 to 63 at 6 week check up. dead within 12-18 mo.,no way !!!! Lupron for 9 mo. Chemo 9 cycles, Xtandi started at # 5. Orchiectomy to get off lupron. Three years+ and PSA 0.000-0.120 range. On 1/2 dose Xtandi and in remission. Now enjoying life, new grandson, new granddaughter, youngest daughter's wedding. Move to retirement home purchased before cancer. Stage 4 and getting on with life at 70 which I was told I would never reach. Good luck with all your treatments and hold on. It will be a rough trip.
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