They started me on Chemo 3 weeks ago, I wasn't keen because I've been so weak and felt I might not cope, I did it anyway and it seems to have got my PSA down from 360 to 150. I have another round tomorrow Oncologist is worried about low blood counts and will add blood transfusion as well tomorrow.
A least I can see some improvement which helps me endure the next treatment. This time seems harder, I don't remember being hit so hard the first time I had Chemo, except for the 6th round.
Wishing you continued success with the chemo and the lowering of your PSA. It is tough on the body as we all know, hang in there!
❤️
I’m glad to hear the good results with your first chemo session. Blood transfusion seems right, hopefully you’ll feel lesser fatigue next cycle. Goodluck!
How you feel after a few cycles will be a big signal of how well it's working. After switching to folfiri, the first week was really hard, but now I'm getting increasing amounts of energy in the second week of every two week cycle. Not today though, it's infusion week which is always a challenge. Glad to hear your PSA is dropping, may you feel the improvement in your body in the coming weeks and not just in the blood tests.
Thanks for keeping us up to date on your ongoing battle!
Just Get through it amigo! Hang in there and heal up! 🙏
Thanks, I've been feeling very low, quality of life hasn't been good since Xmas. Just cannot get around, the fatigue is so bad.
I’ve yet to do chemo. But six years ago I felt it was near the end for me . It will take time to recover . If it’s like imrt ? Eat & sleep , rest up and recover well .. 💪👍
I'm happy to hear about PSA drop. May it continue and bring better times for you!
Hang in there brother. When I endured my 9 chemo shots, I kept telling myself that the cancer cells were feeling twice as bad as I was. You can do this 👍
I hope I read it right that there's some hope in your post. Its a nice drop in PSA I hope you start "feeling" better soon.
We're all rooting for you. Even j-o-h-n, the Roto-Rooter. Hoping you can let a few arrows fly on Valentine's Day. I still can't find your country on the map.
Valentine's Day??? (23 hours ago)
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/04/2021 7:28 PM EST
I've been Roto-Rooted! Valentine's Day came and went and I didn't even notice. Isn't that sad. Guess I need to cut back on reality. Anyway, Zetabow, you know what I meant. Hope the transfusion went well.
You didn't get my card?
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/04/2021 7:53 PM EST
I can't remember.
And the chocolates too?
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 03/04/2021 10:25 PM EST
Life is like a box of chocolates.
I think you meant a box of Ex-lax......
Good Luck, Good Health and Good Humor.
j-o-h-n Friday 03/05/2021 5:05 PM EST
You are so right. I'm sure your Ex-wife has sent you Ex-lax once in a while. One of my kids got wife's Ex-lax (I have no need. I'm full of it.) Poor kid was on the toilet for two days.
Very good news on the PSA decline. My Dad has had the same fatigue on chemo - its really, really rough. I’m rooting for you and hope your energy continues to rebound and your PSA continues to decrease.
Maybe you are lucky to get Psa to more than halve after 6 chemo sessions which I assume is Docetaxel. Better might have been Cabazataxel, but only slightly afaik. I had 6 doses in last 1/2 of 2018, and Psa went from 12 before and up to 45 and stayed level so it was declared a failure, but a month after stopping chemo, Psa went to 25, and docs have no idea why. More new mets were seen in scans. Chemo has a mean time of about a year for benefit, just as many get more time as those who don't.
So I had 6 doses Lu177 from Nov 2018 to October 2010 and Psa went from 25 to 7, with a nadir of 0.32 caused by addition of Xtandi in May 2019, but that stopped working in about Dec 2019. Now Psa is about 200.
Lu177 did much more than chemo ever did, and without neuropathy side effects of chemo which still affect me. But I can still cycle and work in yard doing had work with pick and shovel.
Lu177 made all soft tissue mets in many lymph nodes become undetectable in PsMa scans,
but I still have old active bone mets making some PsMa, and new small bone mets making very little PsMa but much more Psa which means these would be threat in future so I could not have more than 6 doses Lu177.
I began Ra223 last week, about 4 months after last Lu177 dose, so my body had some time to recover. So far, I have few side effects from Ra223 and today I spent 3 hours with pick and shovel digging a storm water drain trench to stop water from neighbor's property flooding my carport in heavy rain. Of course this work should have been done about 35 years ago, but there always seemed to be some darn other thing that was more important. It does not rain much here.
But the work on my feet means I am triggering bone density increase, and calcium demand in bones, so I guess that means I am boosting uptake of Ra223 in the most important week after dose is injected. But I have no idea if Psa will go down or if 6 doses of Ra223 can be tolerated or if I will kill most bone mets, and best outcome is that all bone mets are zapped because Ra223 is said to work best on smaller bone mets.
The problem with all this radiation and chemo is that the accumulated effects can weaken bone marrow below a critical level, and one cannot depend on repeated blood transfusion and a doc said I could not have a bone marrow transplant, and that damage to marrow by ionizing nuclear radiation is permanent.
But it just ain't the time to hoist a white flag yet.
I'm 73, and still able to cycle on sealed roads and off road sealed cycle tracks in Canberra at average speed up to 26kph at 73yo, and nobody over 60 has overtaken me on any ride during last 5 years. I've been doing 200km a week, BMI 23, waist < 95cm, resting HR 50, but now some high BP, but not while active. It could be from docs insisting I continue Xtandi long after it has ceased to do anything at all to slow rise of Psa.
I had diagnosis at age 62, 2009, Psa 6, Gleason 9 in-operable, EBRT + ADT continuing now,
salvation IMRT 2016, Cosadex 6 months, Zytiga 8 months, all before chemo. None worked very well, and 10 PsMa scans since 2016 showed gradual increase of visceral mets then bone mets after 2016 and the reductions of Psa did not mean reduction of met numbers. But Lu177 seemed to do the most, Its mean time benefit is 14 months and I got that, with many mets killed.
My fitness level over last 15 years has been high, so side effects of all these treatments has been minimized. I don't have a pot belly, and I am not depressed. I'd like another life, but Nature only gives us one.
I have a few friends, and although I missed out on having a good marriage, it just didn't seem to matter. I worked hard and didn't mind all that either.
Beautiful early autumn weather here now.
Patrick Turner.
impressive your still riding so well. I was pro Archer (4 x World-Euro champ) it's tough game and just not competitive at any serious level anymore, last good result was 3rd at world champs in France, it was my last good result and beat a strong American team. I started to feel something was wrong then. I was sensible and reduced draw weight on bow, this allowed me to play at local level at least. The Archery community have been amazing, they raised some money for me and helped build our new house, old house was small an over 100 years old, -32C in an old place like that is hard so it was real nice to move in to a modern house with goethemal heating
I see the reason for your code name Zetabow.
-32C? bbbRRRrrrRR, COLD eh? Enough to freeze the balls off a brass monkey as they say here when maybe it gets to -8C.
I just had a week off bike, but spent time each day on hedge clipping, pick and shovel and cleaning up around my house. I'll get back on bike next week, and will cycle across town to see my onco. He quite likes to see me in lycra, and bike parked in the corridor outside his meeting room. When all is said and done, its a wonder I am still alive, and I just dunno for how much longer. If Ra223 works well, Hoo Noze?
Its a beautiful early autumn morning in Canberra in Australia.
I must away to pick, shovel, and wheelbarrow to complete drainage trench. I can't win any prize for this kind of activity, but its True Blue working class method of staying fit.
Patrick Turner.
I have been doing some yard work recently as well, 4 hours trimming a 40 year old apple tree of water sprouts last weekend. I will count that for some bine density building as well. The weather is slowly warming and longer days are a week away with the time change. Did my first longer ride of the year yesterday and looking forward to getting in more asap. I am anticipating the days being at least in the 50s Fahrenheit but I will get high forties for a few more weeks. We have had a lot of rain this winter so have to fit my rides into the few weather windows that pop up. I am not quite as motivated to ride in the rain. This year as I was last year. My extremities thank me because my fingers and toes get really cold from the ADT I think. The warmer weather will put an end to that. Of course warm weather will bring a lot more yard work as well. Cycle of life :0)>
I’m hip on the fingers and toes. Mine go numb a lot .
I could get cold fingers and toes at age 42 in 1990 when I was quite something in B-grade vets in the local Canberra Cycling Club. But at 61 after a long break from cycling I had the same problem on days of 10C max so I found that lycra gloves used by snow skiers fixed that finger problem, worn under short fingered gloves I wear all year round. Thick socks and lycra long knicks solved the cold leg bother, and I survived days cycling across town to see doctors at hospital when it was -3C at 8am. Once I got going, I got warm enough. Two thin skivies under long arm jersey are OK enough now. Take one or both off when temp gets up.
ADT just didn't affect me much except exterminate any normal sex hokey-pokey.
I don't ride in the wet at all now. I have ridden 3 days a week, so if it rains in any ride day, I might ride day after, but still do 3 rides a week. I may cut that down a bit because I just don't need more than 150km a week to stay fit enough.
I have had no side effects from first dose of Ra223 on 26Feb. I guess than means there was good uptake in bones and not much of the dose was immediately sent through small intestine and out the poo pipe. I was supposed to have nausea and diarea, but not yet.
I see my local onco next Thursday, and I hope that blood tests show Ra223 is working already.
Beautiful day here,
Time to drive to my local cafe for lunch and read a news paper. I might bump into friends, a bonus.
Patrick Turner.
Ah hah! “ pro archer” amazing friend! Go geothermal!
Oncologist gave me 10% less Docetxael and 2 units of blood, the blood transfusion seems to have really helped, I slept about 16hrs and woke up this morning feeling much stronger.
Oh yah! Keep on keepin on! ✌️😂
Had my 3rd round yesterday, Blood counts have improved so no need for blood transfusion and PSA is down to 70, all going in the right direction and has helped with morale, I've been feeling low since Xmas, just because I was so fatigued all the time.
When I'm in the right place I hope to start doing some walking and try and build some fitness back up and maybe drop a few Kilos along the way.
Thanks to everyone who gave encouragement, it really helps.
Looks like it’s getting on target. You must have incredible strength to compete and stay focused as you did . Glad you are reaching out. Best to you.
I don't always feel strong, I cried when MO said I had to go through Chemo again, I was so fatigued and weak I just didn't think I would get through without serious complications, fortunately things improved and QOL has returned for the moment.
QOL is probably the most important thing for me, what's the point of continuing if I can't do anything with my kids and all they see is their Dad in pain and can hardly walk, I want them to have good memories of me, not of me hanging on and suffering. I already told my Wife if I go downhill because of PC complications or Covid not to put me in ICU, even if I pulled through the trauma would reduce my QOL so much I doubt it's worth going through such invasive and traumatic care, we sometime have to be real and practical about what's going to happen, I actually feel prepared and at peace with myself.
Thank you for letting me know and saying it out loud. It is a horrible horrible disease.
I had my 4th round yesterday, Hemoglobin still a little low 88 but managing to get around and do some chores, although I do run out of steam quite quickly.
last time PSA was 70, it's climbed to 90, not worrying jus yet, lets see what it is in 3 weeks.
4 of 6 right? Sounds like more good than bad so far I hope if keeps moving in a positive direction.
Thanks the first time with Chemo I had amazing results, PSA 1386 down to 0.028 for 11 months with no hic ups. (if you don't count a couple of precautionary trips to ER with left leg swelling up and high temp). This time I lost 3 teeth, not a big issue, just highlights the toll these treatments put on our bodies.
It has been a recent pattern (last 3 treatments) that I reach half way mark and the PSA starts climbing, so some small concerns in the back of my mind, I'm not going to dwell on it until I see the next PSA result, not that I can do anything about it anyway.
Hang in there. Champ with a bow.. I placed once with my grandson and I shooting a national match with traditional stick bows here in USA. Last try I was so weak with side effects from chemo, I could hardly pull back my bow... Now it's impossible for me, neuropathy and weakness have taken their toll. Best of luck with your treatments. Keep us up to date please.. Doug
PS-- No ICU for me either...
Yeah I'm down to 29# on a ILF BB setup but it's walking the courses that really get me, groups are not great but as least I can still shoot a little. I cannot get alignment anymore, my draw elbow is very low making the release inconsistent
My eldest boy is shooting, he should have good genes as his Mum is also a champ (7 x World/Euro champ) but I'm not sure he will get big into the tourney as he doesn't seem that bothered on trying to win anything but he's great company for me.
5th round yesterday PSA not moving 88, Hemoglobin low again so needed blood transfusion this time.
I'm wondering if the Chemo is worth the discomfort of side effects if it's not going to bring the PSA down, is it going to just start climbing as soon as the Chemo stops?
I'm not keen on the idea of continued Chemo, it's pretty much all I have left as everything else they throw at it doesn't work.
Sending good vibes your way, Zetabow. My husband went thru his second round of chemo last fall (last infusion 12/31/20, what a way to end the year!) but there was no effect on PSA or Alk phos, which continue to rise. 2020 was a year of failures--abiraterone, Xtandi, chemo. We made the difficult decision to end cancer treatments and are moving on to the next stage.
I don't think we made the decision out of fatalism, and we don't feel like we've given up... just realized that the treatments available aren't helping and the cost to our quality of life is no longer worth it. Palliative care is no picnic either but at least we are both home, under the care of an excellent primary care physician, and have friends who will help us take care of daily necessities.
My husband is a lot farther down the road of acceptance than I am, but I think I'm getting there. We live every day with the goal of having the best day possible. We are both at peace with our decision.
When the time comes that you feel you are ready to end treatments, reach out. There are folks here who are on that path and even though there is no cure, there can be healing.
Blessings to you and your loved ones. Stay strong ❤️🙏🌟
Wildrose6 thank you for sharing.
I have come to terms with my fate, it doesn't mean I have quit, I have two boys 12 and 11 so for me most of my choices have been for them more than myself, I now feel the Chemo isn't helping that much, it's been 10 days now and I still haven't bounced back from the last infusion, I feel that's 10 days of quality time missed with my boys.
My partner I'm finding hard to talk with, she's had two loves in her life, the first died of an aneurysm and now she's about to lose me, when I try and talk with her, she cries. I cannot imagine the emotional pain she is going through.
She has always come across as strong but I see the cracks, yet she's still there for me when emotions boil to the surface with me.
Zetabow I am so sorry for you and your family. There is no way to escape the pain of losing our partners.
I spoke with a dear friend a couple of weeks ago and he reminded me that "grief is the mirror of love." We feel this grief so strongly because our love is so strong.
It's OK to grieve. It's OK to cry together. One of us has to leave this life, one of us has to go on alone. It's good to be strong for each other and it's good to acknowledge our heartbreak.
For my husband and I, it's all about having the best day possible. Pain management, resting, eating good meals, visiting with friends, reading to each other, witnessing the beauty of this world. We find a way to go on, for one more day, with intention and gratitude.
Blessings and peace to you, your partner, and your sons. 🙏🌟
And to add: My husband's last chemo was December 31, 2020. So far we have had 139 days together since that date. Some of those days have been awful, but most of them have been good--and a few have been the best days we have ever spent together.
No man may know the measure of his days. Every Day is a Gift!
My last Chemo is on the 27th (ironically my birthday), I will tell my Oncologist no more Chemo. It took 12 days to bounce back this time, my feet have terrible pins and needles and 3 teeth fell out, I think I would prefer some quality time with my family rather than feel so crappy for such long periods.
The Covid situation hasn't helped, I would like to be able to return to the UK and see my family again, I feel that I'm at that point in my health where travelling is becoming more difficult.
Results from oncology today post chemo
Dexamethosome with chemo?
Chemo
The Arm Saga continues...to chemo or not to chemo
Chemo
