A week and a half has passed since my first docetaxel infusion. Plus the twice daily predisnone. I've had no energy and rarely left the house. Nausea has come a few times but for I was hoping that energy would return by now. I find myself asking if chemo is worth it. A few short weeks ago I was walking the golf course. I know these decisions are personal choices but the experiences and thoughts of others are always welcome.
Chris
I got my infusion every 3 weeks. First two days afterward, I did chores because I was high from the dexamethasone I'd take before the infusion. Then I'd absolutely crash for a week-and-a-half. Used that time to sleep a lot, lounge, read, and binge watch some favorite programs.Then I'd be normalish for about a week before starting it all over again.
I found that the worst part was not knowing what to expect. After the second infusion, it became a routine that I was used to. My advice: don't worry too much, and don't rush yourself. You'll be done with the chemo soon.
Thanks for the quick reply. What were your mets? What outcomes did you get from the chemo?
Widespread mets to bones, PSA at diagnosis 10,000. I'm on Lupron now, and my PSA is stable at 6 a year later. Considering where I started, I'm happy with 6.
awesome. very awesome.
What treatments have you received?
Six docetaxel chemo infusions at the beginning of the year, and a Lupron injection every three months.
Hardly had anything.
Do you know how to look on Trials.gov for clinical trials that could be interesting? You have quit a margin "to play with".
Are you thinking of "going after" the cancer? There are a number of perfectly normal approved treatments that you could get, that have milder side effects than (even) the Lupron that you are taking. Curious what your plan is, if you have one, and if you have a "team" such as it is.
There is a trial in my profile that I think is easy, and Johns Hopkins is nice place to get to know. Dr.Pienta has been at it a while.
There's a major cancer research center — Fred Hutchinson — directly across the street from my treatment center. I'm especially interested in the bi-polar androgen trial. One of the principal investigators for that trial has moved from Johns Hopkins to Fred Hutch. I don't currently qualify, but my onco is aware of my interest.
Is it Michael Schweizer? I see he worked with lots of people from Johns Hopkins including Denmeade.
fredhutch.org/en/labs/profi... Dont qualify for BAT because you need to fail on abi first?
Yes, it's Dr. Schweizer. And yes, I need to fail my current regimen to qualify.
That is the part that i am not crazy about. You have to go down the zero-testosterone path past abiraterone, before they feel it is ethical to try BAT. (at least I assume that that is what it is.) But down that path lurk other monsters like the AR-variant7, and neuro endocrine tumors (aka "small cell"). And those babies do not make PSA so you don't notice them, and some of them do not (even) show up on a C11 scan - they do not accumulate choline. You have to use a glucose tracer. If you remember.
Hey, are you pregnant or something?
Europe is working on neuro endocrine tumors (NET), but in the US, it's the U of Iowa. Iowa? Really?
Hi Chris , my father has experienced the exact same things at his second infusion. it lifted about 10 days after. he seemed very depressed, and felt like you said is it worth it, since he couldn't function and he's a workaholic who runs his own businesses, so he became stressed , very removed, and you could tell he was feeling disconcerted about his hair and for the first time ever, humble as can be thou g the he looKS old, but in reality his looks did not match what he felt. pale but he looks better than he feels so know that people don't see you the way you are feeling about yourself if that's an issue. I'm new to this world but I can tell you that it is a cycle and it seems to get a bit nharder each time but know there is a beginning and an end to the agony between treatments. we got my dad a tablet to play with while in bed. being sick myself with other disabilities, accepting the down days is difficult but if you could accept that it's a cycle and keep visualizing the great results at the end of chemo, you will pull through . you have many days and years ahead. this too shall pass . feel better keep us posted. xoxo with empathy and true belief in my words, Erica
I am a golfer and had 15 infusions over 2 years -still managed to play golf after 1 week and a half so not all bad -that was always my goal to play golf between chemo -had to use a cart however -not enough energy to walk -just finished chemo and now on Ztandi -much less side effects than chemo
Thanks Bryson...what sort of improvements did the chemo give you?
Chris
No improvements just controlled my cancer for nearly 2 years after ADT failed -in Australia to get access to Xtandi or Zytiga one must fail taxotere-so just the standard sequencing method of drugs-I was originally diagnosed in 2005 with Gleeson 4+4 and PSA 24 -when I started taxotere my PSA was 40 and dropped to 3 after 9 infusions -after a 2 month break it then rose back to 39 and was 24 when I stopped
Sorry you are struggling. I know my experience is not typical, but I have tolerated the chemo (22 cycles and counting) almost without side effects. I've only had a total of 2 bouts of nausea and 1 afternoon of fatigue in the year and a half since my first chemo. Cancer continues to progress, but slowly. Lost most of my hair during the first couple of cycles, grew back during a break, and now is just thin. I do have peripheral neuropathy and bruise very easily (especially arms) because of the prednisone. I am nearly 4 years with advanced cancer, and still fighting. Keep strong!
Is it common that it's not just 6 cycles but 6 cycles a break and then start again. I thought the protocol was 6 treatments and then continue adt if it's working.
My experience was 10 cycles before the first break, after nearly 3 months started back on docetaxel for 3 cycles followed immediately by 4 cycles of cabazitaxel. Took a 2-month break before the docetaxel/carboplatin with rapamycin trial, but because of new and larger spots in liver I was pulled from trial but continued without rapamycin for a total of 5 cycles. Waiting till ,2017 for new approach. Without the liver issue the trial would have lasted 10 cycles or more.
Scans every 3-4 cycles to see if treatments should continue or change.
They said they are scanning in 5 weeks. 3rd chemo tom. so if the body is not clear it is common to repeat treatment or alter the chemo until they get the results they want? as I understand it the protocol is 6 cycles at first, did you do 10 by choice or due to liver? how are you feeling these days. I truly wish you a happy holiday and ty for replying xoxo
I have been scanned at the end of every third cycle since I started chemo. After the 9th cycle we decided on one more then to take a break mostly because of the holidays and the fact I had some numbness in feet and fingertips. That break was too long (3 months), I was having pain for the first time. When the scans show clear progression, we change the treatment and review clinical trial options.
Liver has only been as issue since cycle 17. There was some concern it may have become neuroendocrine, but that seems not to be the case, thankfully. New approach will be decided in early January.
Best wishes for your holiday and good treatment outcomes.
You mentioned new spots in liver. dies this mean that the docetaxel simply wasn't working or could it cause the spread in liver by weakening it? I'm just curious as I image the answer is controversial but I have to ask to learn
Just to be clear, my current treatment is docetaxel plus Carboplatin. Lymph tumors are clearly smaller, bone tumors are stable. Only liver was somewhat worse on the study, but that was enough to pull me off the extra drug, but not to stop the two chemos while waiting for liver biopsy results, which appear to be "garden variety" prostate cancer. Ordinarily I would have had another chemo this week, but we are postponing until after the first of the year.
I am currently pain and fatigue free and generally feel well.
Rooting for your dad.
Ty you'll be in my prayers, 2017 let's go beat up some malignant cells. go team! best wishes and happy holidays I'm glad you get to enjoy it symptom free.
Chris just persevere. I had my 10 cycles of Docetaxel with no problems. We all respond differently to each drug. There's no parking near my hospital so I used public transport to get me close and walked the final mile there and the first mile back because I wanted to remain fit enough for my 4/5 long walks daily with my young Saluki dog. I think the walk immediately after infusion really worked. And the 8 months if chemo set me up for my Zytiga. After 4 weeks of Zytiga all spinal bone mets gone, both hips OK and chest and ribs mets virtually gone. We think the Docetaxel kicked the arse of the ca. The hardest part of the chemo was realising that it had given me a foggy brain but I did not know I had dulled until I started to think clearly again. Good luck....I am now 0.13 having been 200. David
Force yourself to move about. Go for at least a 1/2 hour walk daily, no matter how difficult. I went through the same thing and being a former runner, literally cried then I could only jog 2 miles before having to stop and walk. A far cry from my former days of going out and running 6 to 8 miles at a 8 minute pace. It's mind over matter. Just do it. it's your body, not cancers, not docetaxel's. I found music through ear phones helped while I walked/ran. If nothing else, watch an movie and walk in place, walk 5 minutes, sit 15. bottom line, get up and move! Being non active is the worst thing you can do. go for it! Good luck!
Hi Chris, I just had my round four of taxotere and it is working for me, I had some bad bone pain in my ribs and chest, the chemo has reduced my bone mets and the pain is gone
psa went from 45 down to 6 and I currently feel good , for me I am sick and in bed from chemo only on days #3, #4, #5 those are the worst, beside that I can do what ever I want
its true that I am slowed way down not much energy but I can still have some fun.
so it makes sense to keep going , keep fighting, we are not done yet
you keep going Chris, You can do this !
Look at the larger picture. Almost 13 years ago I had chemo infusions for a six month period with weekly infusions. Plus 30 mg of Prednisone a day during the six months. Took Zofran for nausea. Worked three days a week averaging 5 hrs a day.
Look it's no walk in the park, but the alternative definitely sucks.
Gourd Dancer
Dancer,
What was your situation when you started chemo? Had the PCa metasticized to many areas of your body?
Chris
Chris I had mets to L2 & T3 with a PSA of 32.4. I started the chemo 8 weeks later. After a three month Lupron injection, my PSA dropped to 7.3 and then 3.0 on the day of the first infusion. There is not doubt that, like most, my PSA would have gone to undetectable on the Lupron alone; however, like most people, it would eventually rise taking hold leaving me to try other than chemo drugs keeping this disease at bay. Who knows for how long?
Now 12 1/2 years later, I know I made the right decision.
GD
GD
We all experience this disease differently. My PSA was 1.2 prior to radiotherapy and yet I had a large tumor growing out of my prostate and invading my bowel! The only clue was constipation and increasing discomfort in the lower pelvic area.
Now it's in my lungs and liver. Hence the chemo. It's now 11 days since infusion...I threw up early this morning and woke up with diarrhea...I'm hoping for some respite soon.
Chris
Sorry to hear this. Zofran for nausea was the only thing that worked for me.
GD
Praying for you
How are you doing chris?
You are so nice for asking! Thankyou. I was always unsure whether I would do chemo. So many bad accounts of the side effects. Two weeks after my infusion, my mind is made up. I am not continuing. It's beyond awful. Once I get some health back I'm going to enjoy what time I have left. Quality of life before longevity. I will continue with my monthly ADT shot.
Merry Xmas
Chris
Did you try reducing the dose? Or do people do that??
Chris I'm sorry to hear that, but it's not the end of the road for you Mr.!did you consider the radium 223 for the bone mets.each drug has different side effects for different people, so perhsps that might be easier or immunotherapy. as you know some do argue that chemo will do more harm than good . however as my original opinion ,I'm trying to dismiss my subjectivity because my dad will be going for round 3 and I want to stand behind his decision , though I'm very scared and hurting because he's avoiding me not wanting me to see him this sick. please talk to your doctor, and then another, and i give you props for taking control of your treatment. There are more options and if you want to go natural because you feel that's what's best for your body, do not doubt yourself. my friend angel howerton, look her up, did heal from a rare cancer given 3 weeks to live. I wouldn't believe it if I didn't know and love her. But she does counsel people and embraces integtstive therapy and is on top of all natural research.. She has a nutritionally and herbal background from growing up native American . Also, there is a center for integrative therapy in Florida you might want to look up. She told me she has had men have fulfulling experiences. nativeangel777@gmail.Com is my friends email. just let Angel know you met me on line. she may be able to help you naturally fight the cancer in addition to lupron and indeed if you are one who can stick to protocol (I'm not lol) I have no doubt you will enhance your vibrant energy that lupron zaps as well as extend your joyful life. she does not charge,so I'm not advertising. she has one goal, to help those with cancer on every level including taking into account emotional wellbeing . she's been my friend for some time, so reach out to her. I have spoken to her about asking for some payment bevause she is building camp hope for children, a healing center whete kids and familirs vsn learn about natutal care. Its very gorgeous, but she funded herself and its been her lifelong dream and donations are helping to get the center ready for visitors. But she would revirw all your charts and blood, for ftee and recommend . Chris , quality over quantity agreed although yes as a daughter I'm willing to pay 1,000s on just more days. but just as my dad feels this is the best path for him, if in your gut you know, trust your body and travel a different road. explore and learn and by golly, get off the computer and go live! lol let me know if you talked to angel if you need anything etc. as I have psk my dad won't take, my juicer, and a few other things that might help or in any event won't hurt. My dad refises to change diet or take anything but chemo which makes this holistic yogi quite upset blessings and happy happy holidays.keep me updated. You started all at the same time as my dad so I won't forget you. Also gus,patrick, and nal put out some amazing info on natural therapies. Nal actually listed some for me recently if you want me to find that. Also angel can help you detox the body from the chemo, since you had such a hard time on it. And she can help you to help yourself. cheers my friend, go learn something new , an instrument, etc something you've always,wanted. keeping your mind sharp will help you heal as well. healing hugs. xoxo Erica
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