Docetaxel, Chemo in general - Advanced Prostate...

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Docetaxel, Chemo in general

66 Replies

Hi guys! My husband is very advanced stage IV, however until recently has been super healthy and able to do most anything he did before. We are 4.5 years in since diagnosed.

He has failed all the options except for chemo which he is so far refusing. He is now unmedicated except for Lupron and the cancer is moving fast! His PSA went up to 81, he then received radiation to his spine and it came down to 46. One month later we are back up to 58.

We have travelled to Germany for LU177, but only received one treatment which was minimally successful for a short period of time. We have also travelled to Sloan Kettering and Cornell in NY and Tulane in New Orleans. Neither MD Anderson nor Johns Hopkins has anything reasonable for him to try either. He is currently treated at Mayo,

He has been chosen to participate in a new Act225 and LU177 combo study that will be starting within a couple of months (supposedly).

We have been told less than 12 months a couple of months ago if he does nothing.

His doctors have all told him to start Docetaxel right away, at least to buy him time until the study begins. He is adamantly against chemo and believes he will get sick until he dies. Period,

He is in excruciating pain now but as far as we can tell still only has Mets to bones.

Do any of you have success stories or anything positive that I could show him about the chemo? If he doesn’t do it, at least until the trial begins, I’m afraid we won’t have much time left.

Thanking you in advance. Could really use your help convincing him to do the chemo,

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66 Replies

Do the chemo, Now ! It's that or die.

Pleroma profile image
Pleroma

I think most people on this forum will agree that the pro's of Chemo treatment VASTLY outweigh the con's.

Chemo did wonders for destroying my bone mets. A year later and all is well.

I would really recommend he start chemotherapy right away, especially now since he will most likely get pain relief as well as slowing down his progression. The pain relief will most likely outweigh the side effects significantly.

When I was diagnosed, they recommended doing chemotherapy along with ADT. At first I refused, thinking it would probably be terrible. Many people are afraid of chemotherapy unnecessarily.

After reading many accounts on this forum and talking to others, I decided to do it. So glad I did. It was very tolerable and it helped to relieve my pain. The first 5 days after infusion you feel crappy, but not that bad. After that you just feel better and better. After 10 days it's pretty much back to normal.

I had the flu last year and I was thinking how much worse it was than chemo. I know I wouldn't give up if I had to face having the flu again so I will have no problem doing chemo a second time.

Docetaxel and Cabazitaxel chemotherapies are more proven treatments than LU-177 or AC-225 so I would do those first.

Another thing he could do is get molecular testing and see if there are any treatable mutations.

Good luck and I hope the best for him.

Another thing to keep in mind: If he does try chemotherapy, he only has to commit to one cycle. It's a small commitment, typically 5-10 days of side effects. If it's too much for him he can stop. My guess is he will get significant pain relief and keep going.

in reply to

Thank you very much for your info ❤️

JP63 profile image
JP63 in reply to

My experience of Docetaxel was very similar to Greg’s. First week after infusion felt a little sick after everything was fine. I lost a little hair but that grew back after treatment finished. I would do it again in a heartbeat if it was necessary.

Parscore profile image
Parscore in reply to

So after one cycle of chemo, in 2017 , are you still on Lupron and is PSA is? I am kicking around the idea of giving limited chemo a shot. Was it Docetaxel that you did. Thanks for the information...

in reply toParscore

I'm on Eligard and Zytiga right now. My PSA is .79 at this point. After Zytiga stops working, my doctor said he thinks the next step for me should be Cabazitaxel since my PSA started rising within 6 months after the end of Docetaxel. I thought that was interesting to be looking at early Docetaxel chemo as having essentially failed. But he said "You only go back to well if there's something there." or something like that. So he feels going straight to Cabazitaxel is the next step after determining progression through imaging. I agree.

Parscore profile image
Parscore in reply to

Thank you and good luck

Tall_Allen profile image
Tall_Allen

Sadly, by waiting on chemo, he is insuring that it will be of less benefit, and that the side effects will be worse. It's a self-fulfilling prophesy.

tallguy2 profile image
tallguy2

No doubt in my mind, he should do the chemo. I was active throughout and had no food issues either. Best wishes with the trial.

spouse21 profile image
spouse21

Gregg57 has good advice. My husband is about to have his 6th chemo treatment this week. Zytiga didn't work, but before we found that out, he developed mets all over while on Zytiga and Lupron. He's still on the Lupron. We will have no idea until after the 6th treatment whether the chemo worked.

Here's his experience so far:

--Porta cath embedded in his chest--that sucked for a week or so, but now it feels "normal." The week after the port installation, he resumed his running schedule then as weather got colder he started to swim every day or walk up and down some big hills 3 miles round trip.

--The day of chemo is "okay," i.e. we always go out for a late lunch afterwards. He's not flattened that day.

--Days 3 and 4 = flu + hangover feeling that lasts a couple days. Hang home on those days just like you would if you had the flu. That feeling lasts about 2-3 days.

--Pain he had in his neck for months before chemo is totally gone.

--Weeks 2 & 3: mega walks/swimming, etc. We take some family trips a few hours away by car; he drives. We enjoy a slowed-down version of our usual lives--movies, dinners out, entertaining at home, seeing friends and family.

--Side effects beyond flu + hangover feeling. General fatigue and takes a half hour nap every day. Since he was a "cool baldy" anyway, the hair loss doesn't bother him so he doesn't wear an ice cap during the infusion. He does wear the cold mittens and cold socks during the infusion He's starting to get some neuropathy since infusion #5, so I was about to ask about that when I decided to respond to your question.

He's getting scans two weeks after #6 this week, when we'll find out if this working. If it is, then he'll probably get a couple more infusions. (He's 76, so going to 10 or more will take some convincing.)

I hope this helps, so your husband can possibly reconsider his chemo decision. It's no walk in the park but neither is being in pain. Let us know how it's going.

in reply tospouse21

Thank you so much ❤️

dockam profile image
dockam

I had 15 Taxotere sessions in 2015 and still worked 6 days/week. I fasted 2 days before each to stave off most side effects:

medicalnewstoday.com/articl...

osher.ucsf.edu/patient-care...

My best to you Dad

Hugs

Randy

SeosamhM profile image
SeosamhM in reply todockam

Agreed, dockam. Fasting prior to infusion really helped me and I was able to keep working.

Cheerr profile image
Cheerr

Start the chemo. We had a choice of chemo vs Zytiga and chose chemo since earlier the better. My dad completed 6 cycles of chemo last month.

I was very skeptical before starting this but it went very well with minimal side effects.

Also chemo can help reduce the severe bone pain he is having right now. If it works well, he will mostly feel the difference in the first 1-2 cycles itself.

So go for it. Goodluck :)

16starsky profile image
16starsky

My Husband had 6 sessions of chemo, very few problems, dry mouth, hair loss, a bit of neuropathy in legs, but all ok now. No sickness, a lot better than we were expecting ! Don't delay do it now ..

Kim

Dachshundlove profile image
Dachshundlove

Hi Jacquitiani

The way chemo is administered now (with pre medications including steroids and anti nausea drugs) prevents many of the negative side effects.

Your husband can call and talk to my husband (just finished chemo in early December) And get a first hand account of this.

Chemo was NOT that bad. In my husband’s case, they added carboplatin because docetaxal didn’t get the desired response.

Carboplatin is second line and harder to tolerate that docetaxal.

Some guys we’ve met prefer chemo over the hormone drugs.

in reply toDachshundlove

Thank you so much for your input. I really appreciate it and may PM you if he’d like to talk to your man. Very generous and kind of you both ❤️

spouse21 profile image
spouse21

Me again, jacquitiani. It does take a few weeks to get chemo up and running due to installation of the portacath, which needs to heal, and various appointments to set up.

Boywonder56 profile image
Boywonder56

He is where i fear...i have nixed chemo and rad. From get go....you say 4.5 years into this...and run off a litany of trials and.....errors....( authors thoughts)...i hope he has had time to smell the roses...in between planes tranes automobiles....all of us in here with sig. Others ....hang in there for you...when its our bodies and minds that are racked ..one of the biggest qol factors is feeling like "normal"...and hanging around and feeling like shit just to pass the time of day...isnot normal...give him a few days.....rub his back...hold him tight..remind him why he should hang around....its up to us the ones with the disease....to live as we please...check w me in 1.5 years....psa is climbing...and 3rd line treatment is next..hope i didnt come across as crass...just another voice...

in reply toBoywonder56

No worries, I can’t write a whole book so just tried to hit medical highlights but mostly we’ve lived, a lot!!! We’ve been able to do the things we wanted to do, smell the roses, eat dessert first, say the things that needed to be said.........etc. My guy is a warrior and through a lot of bullshit from the treatments, he has never complained and mostly we have had a beautiful, fortunate and fun 4.5 years! For that I’m grateful. Now however symptoms and pain have been making “living in denial” impossible to do. It will always be his choice and his way, I’ve promised him that from the beginning. I realize that I might be asking him to press on and he’s just tired. I don’t want to accept that but know that inevitably I will have to let him go, in his time, in his way. I just know him so well and don’t believe that it’s quite time for me to hang up my Pom Pom’s. I think if we can get this pain managed that there is still some quality time ahead. I’ll never know exactly how he must feel but from the beginning, in some way, it’s like I have cancer too. I’d rather be dead myself than be left here alone without him. I have to believe that when it’s really time, I’ll know it and will be strong enough to see him through it with strength, understanding, love and compassion. Until then, I gently nudge........

in reply to

Beautiful story thank you! I too adore my man and want him here to be here with me so desperately We just do not know so I hold every day as precious. I feel like I have the disease. You touched me with that share. My husband never complains ever. Lives each day doing what he wants to do. He’s my hero. So, as his partner, I carry on. Thank you again and be strong. Many prayers

So Thank you for all of the input. We found it to be very helpful and I’m pleased to report that he has decided to give it a try. Today his MO likened it to trying to get a 6 year old child to eat broccoli lol

Just take one bite and if you don’t like it you don’t have to eat any more. So for now, that’s the plan. One treatment and take it from there. I’m relieved (I think). I just pray he tolerates it well. Oh and that gorgeous head of thick silver hair! That may be the hardest part for both of us!!! ❤️

in reply to

My husband did COLD CAPPING. kept all of his hair. We did not want to worry our grand babies who are 7 and 10 years old. If you’d like info let me know on this sight. Penguin is the company name and they are everywhere!

in reply to

That's funny what his doctor said. We had a "one bite rule" with our kids.

I really do think he'll be glad he did it, especially if he gets pain relief which I would expect to happen.

I remember when I was first diagnosed and going through all these tests, appointments, needle sticks, bone biopsy, stress, etc. I had just started Casodex and I remember coming home after going through this 1 hour MRI (the operator refered to it as sound torture) I was so exhausted when I got home and just wanted to give up on everything.

The next day I woke up in the morning and suddenly had this realization. I remember thinking to myself "I'm getting better!" In that moment of time, it just made everything worth it.

I do believe he has some good quality time left and if that's the case, it's worth it to live out that time. Who knows how many drops of life we have left, let's just live every one.

Wishing the very best for both of you.

spouse21 profile image
spouse21

My husband prefers chemo to broccoli!

P.S. Do the ice mitts, ice socks, and most especially in your husband's case, the ice cap, which is said to help prevent loss of hair. I've been watching a young woman scheduled at the same infusion time as my husband. She and her guy come in with a giant cooler that includes the ice cap. I think she's had four sessions, and so far she still has her beautiful hair.

Dachshundlove profile image
Dachshundlove

The ice cap works, my husband kept a lot of his hair using an ice cap, AND either way,

Hair grows back!

zengirl profile image
zengirl

Good luck to you. My husband is in his 24th year of fighting this beast and he was initially diagnosed with stage 4. He has had so much chemo I can’t count it on my fingers and toes. But, he’s alive. Not working but living a life, being with us, walking the dog, and driving some and watching his news and arguing with us about politics. He lost a lot of weight when he tried something not chemo, a med used off brand, originally for women with ovarian cancer. He doesn’t qualify for Lu177 because he has had more than two different kinds of chemo. Convince him. To get onto chemo and see where it goes. You can message me anytime as we are sisters in this fight.

bellyhappy58 profile image
bellyhappy58

Just finished my 6 cycles of docetaxel. PSA is now at 0.192....Diagnosed in Nov 2018. Chemo treatment is not as terrible as it sounds. Initially, I too was afraid and fearful of it. And having a chance to seek inputs from this forum, doctors and friends as well as getting myself well prepared (much good suggestion from these people here ), the treatment was pretty much a non-event. You will encounter some of the flu-like symptoms for a few days but it was definitely very manageable. Drink a lot of fluids an do a lot more exercises whenever possible. May God give you wisdom to make the right decision. God bless

Irun profile image
Irun

I had a PSA of 342, had chemo , no side affects apart from cosmetic stuff, I was never sick .

What they never explain is cancer is fast growing , chemo kills everything that grows fast so that’s cancer plus hair loss, cracked nails, loss of sensation in finger and toe tips, lose taste buds , lips crack but all of that was minor and barely an irritation .

3 months after all was pretty much back to normal .

Now the very good part. I ran 2 marathons on weeks 13 and 15 of chemo , have lived 4 years since and run ultra marathons all over the world . As I write this I am at an airport about to run 120miles through the jungle in a tiny country island called Sao Tome. I have run across the Arctic, Sahara, Cambodia, Albania , Spain all with terminal prostate cancer all after chemo . My PSA is now 0.15, whilst I had chemo early it was the best thing I could have done. At worst hubby could start and stop at any time . Never give up, show him my website makethemostofit.org

zengirl profile image
zengirl in reply toIrun

You are awesome! I went on your site. You are inspiring. While being there for my husband, I forgot about me and was recently diagnosed with type 2 diabetes. Your site makes me get off of my tush and get moving.

Irun profile image
Irun in reply tozengirl

That’s exactly the attitude, it’s not about how far, fast, high it’s all about putting your foot on any start line that you want be it exercise , learn the guitar, a language, be a better cook etc it’s about doing something that you want to that gives you a reason to want to keep going and then you will do whatever it takes to make that happen .

Muffin2019 profile image
Muffin2019

Do chemo now

Doseydoe profile image
Doseydoe

Hi J, next week I go in for my second IV of Dosetaxal. The first session was like anything new, a bit daunting, but you face the fear and do it anyway. The nurses were lovely and it was similar to having an IV saline bag, in fact, you start and finish with one.

I'm stage 4 APC, GL9, with a tumour in my bladder, a stent keeping a kidney going and spots of PC in my hip. I'm on daily Cosadex, 3 monthly Eligard and doing the doseydoe with the doxy.

I've managed to keep my food down and all ablutions are pretty normal. This may change after my second session next week, but I still have my hair and sense of humour. I don't have many treatment choices, so I have 5 Chemo sessions to go and hopefully the ADT and Doxy will give me some more time. Time to get busy living, hang in there J, ......... DD 😎

Oh my goodness do the chemo! My husband did the chemo with minimal side effects. No nausea no diarrhea he was just a bit more fatigued .....the chemo today is very very tolerable. He had some success for several months with his PSA dropping. He is back up again and going to give LU 177 a try.

Kodamolagai profile image
Kodamolagai

I believe Chemo Docetaxel is not such a demon .I am now on year 5 of treatment for advanced pc with bone mets .My six sessions of Chemo with 21 day intervals ended in July 2016.Chemo was followed by harmone treatment (Honvan ) till Dec 2018.Psa dropped from 32 in 2016 to 0.050. before riding to 2.5 in March 2019 .Now on Zytiga and prednisone .Psa is under watch .

Apart from occasional back ache and joint stiffness I feel ok.i am 70 years now

I am from Mumbai ,India

My yoga guru psyches me up from time to time

I say to myself

I am in control of my well being

Medicines do it’s part .

Our mind has the power to deal with very many adverse situations

We may not win ultimately because our cells cannot regenerate and keep us immune forever

Chugach profile image
Chugach

I’m so sorry to hear this. From my personal experience I did chemo for the first time in 2016 I don’t remember the cocktail but it was a strong mix and a tough few months, but I was climbing mountains again by the fall a couple months after and had 3 good years that followed with very little to manage. I have now done a second round docetaxel, it was much easier than the first time. It did not make me feel nearly as bad. The 2016 chemo probably saved my life. Radiation can help with pain. If something is hurting, hit it with radiation. Mixing chemo and radiation can sometimes complement each other and work together. Also check out antidepressants, that can help too.

Patrick-Turner profile image
Patrick-Turner

I had Docetaxel and after 5 shots had to quit because Psa went from 12 to 50.

But it was already up to 40+ at 4th shot, and oncologist referred me to Theranostics Australia who sell treatment with Lu177. But after chemo Psa went down to 25, and PsMa scan I had showed Lu177 would work so I was able to begin Lu177 within a month of 5th chemo shot. Psa was not much for first 2 shots 8 weeks apart, but ir began to drop well after 3rd shot, and I began taking Xtandi. After 4th Lu177 shot, Psa dropped a lot and in 6 months it was 0.32, so I had to keep going to get it, or I risked it failing to help me.

But no Psa is rising and is about 1.5 now so I had scans last week to find out why, and maybe Xtandi has stopped working, and I don't want more chemo because I doubt it will work. I may have more Lu177 maybe, it depends on what doctors diagnose is going on during coming month. I am symptom free now, and I cycled 211km last week, so I I am OK, but things can change rapidly.

I had a chance to be in a trial here but it was for Cabazitaxel or Lu177, and I didn't want to be assigned to Cabazitaxel because its chemo, so I went to buy the Lu177 at TA. I probably would be able to get more Lu177 without much delay if I needed it, maybe with some added Ac225, which is very effective on bone mets.

Too much Ac225 gives worse side effects of dry mouth and dry eyes. In a month or two I expect Psa to be about 5, so that's good figure to have another PsMa scan. But CT scans from last week will be analysed this week when my onco gets time and he will let me know if he needs to talk to me sooner than scheduled time in 6 weeks.

I live in Canberra in Australia so some good medicine is not far away in Sydney,

and my onco is in Canberra Public Hospital, and he does not hesitate to refer me to where the best treatment is when it is not here because my city is only 400,000 and Sydney is much bigger with fuller range of possible cancer treatments.

Meanwhile, If your man has chemo now, it won't do any harm, and maybe good idea if there's a delay on getting more Lu177.

Lu177 does take some time to work on bone mets, usually 2 or 3 shots to achieve good results. It seemed to work well on my soft tissue mets in many lymph nodes after only 2 shots.

If your man waits for the trial of Lu177+Ac225, will his eligibility be prevented by having chemo? Trials often have strict set of conditions, and you need to know what they are.

Chemo has side effects of neuropathy mainly in function of legs and feet, they kinda feel slow and weak, and a fast fox-trot or a tango might be difficult. But I have coped OK with side effects that have lingered for 15 months so far, but effects have slowly lessened. Lu177 gave much less side effects. Bone pain went low after first shot. But it was never so high I needed pain killers, but I am glad to not have dithered around without making a decision. I still am on ADT since diagnosis at age 62 in 2009 with Gleason 9, 9/9 positive biopsy samples and inoperable and Psa was only 6.

I am surprized you man has no soft tissue mets. They usually show up with bone mets in PsMa Ga68 scans. The other nuclide treatment for bone mets is Radium223, aka Xofigo. It replaces calcium uptake wherever a lot of calcium disturbance is going on. Side effects are weakened bones, but no matter what is done now, weaker bones may be inevitable. There are men here with Fentanyl slow release injects to control bone pain.

Patrick Turner.

My husband had nearly 100 treatments with chemotherapy over a number of years. He had 20 treatments Docetaxel in two sets of treatment without too many side effects and nearly 80 Cabazitaxel over about 5 years. We got on with life in between chemo cycles and had quite a reasonable quality of life. Chemotherapy was the most effective treatment for my husband’s aggressive cancer. My husband has just passed away but he lived with an advanced aggressive prostate cancer for over 17 years.

Dalipup profile image
Dalipup

My husband did five rounds of docetaxel. He was in the "maintaining" group as it really didn't knock the cancer (also only bone mets) back, but also didn't allow it to grow. your husband will receive steroids around the time of chemo so for us we took the two days after chemo to do fun activities, going to local museums, taking grandkids places. But when that wears off he had two or three days of being super tired. He never really got sick to his stomsch, chewed ginger tablets a couple of times. he did lose most of his hair and after five rounds began to get a round face from the prednidone, but it wasn't that hard on him. After all his hair came back thicker and darker. Have him try at least one round. It was not what you see in the movies. Hopefully he can get a good response.

Hotrod65 profile image
Hotrod65

Premeds Ward off the effects of chemo today..couple days after infusion it would hit me as just extreme fatigue, so I slept most of that time, but then it was pretty back to normal, some hair loss, mostly body, not head or facial, never a day of naseau or vomiting..it's come a long way and the word "chemotherapy" is scary enough..Good luck

in reply toHotrod65

Oh thank you, I can’t wait to read this to him!

john205 profile image
john205

Everyone's experience with chemo is different. Having said that, there is no doubt in my mind that he should do it. I had Docetaxel for 6 cycles beginning 2-3 months after my diagnosis. I was fatigued and had mild nausea for a week or so during each cycle, but I was able to do exercise, and my wife and I went to Paris for a week in the midst of the chemo (a bucket list item. We delayed the 4th cycle of chemo so we could go while I was feeling completely well, with the blessing of my oncologist). My whole course of chemo took 4 months and I felt fine within 2-3 weeks of completing it. That was a year ago. I am still feeling well, planning more travel with grandchildren, exercising regularly and enjoying my life. The chemo was not fun, but it was not horrible. I was not miserable and the benefit was clear.

Docetaxel is a proven treatment and, as chemo goes, is generally well tolerated compared to some other chemo drugs. Why not do something that is a known standard of care, with known benefits.

Union98 profile image
Union98

I haven't read all the comments, but I do understand his fear of chemo. I was sick to my stomach throughout my husband's treatment. It sounds as if QOL is very important to him, respect that and try to

find options that will give him some control over his own treatments.

One option is do one treatment at a time with the option to stop if he decides to. Another options is to ask for a reduced dosage which can still kill cancer cells but have lighter side effects. Sending positive thoughts and prayers.

Luv2fish profile image
Luv2fish

For us, the thought of chemo was way worse than actual chemo. He can always do 1 infusion and stop if the side effects are too much. Everyone reacts differently both the side effects and the response to chemo. Hubby has had 21 infusions over the past 3 yrs. I assume your hubby has tried xofigo?

Survivor1965 profile image
Survivor1965

I have done 21 chemos in total, not all at once. Did hormone therapy same time. Went from Docetaxel to Carboplatin to Jevtana. Not as bad as its made out to be and the advantages far outweigh the downside (death). I worked thru most of it, but finally retired. Days 3-5 are the hardest when the pre meds wear off. Get a sleep aid to combat the steroids tbat he would get. Bottom line, its all about time. If he wants more time do chemo.

Appraiser profile image
Appraiser

I feel quite similar to your husband. If he’s really that adamant about it check out “the center of advanced medicine”in Atlanta they offer fractionated chemo ( low dose chemo) along with “insulin Potentiation therapy” you can read about it on their website. I’m looking into it myself along with other options

Do the chemo! Now! My guy started out stage4 advanced. Gleason 9, PSA = 206.

6 rounds of Docetaxel, PSA dropped to .49 and holding. The chemo itself isn’t as bad as what he thinks it will be, the fear of it is understandable but it has made a difference for us. Side effects were fatigue, a small rash would pop up on a different body part after each infusion but disappeared with just good moisturizer applied. We used ice packs on head, hands and feet. You won’t need anything fancy, we used ice blocks from our lunchbox. A migraine cap for his head. Never got any neuropathy and kept his hair.

He exercised as much as possible and is pretty much symptom free for now.

Don’t wait!

6357axbz profile image
6357axbz in reply to

When was his dx? Was he metastatic?

in reply to6357axbz

Diagnosed in July, extensive bone mets .. body scans yesterday, appointment tomorrow with doc.

6357axbz profile image
6357axbz in reply to

Do you remember which migraine cap you used?

in reply to6357axbz

Ice Beanie Natural Migraine Relief from Amazon. I tried to provide a link but iPad not cooperating today...

6357axbz profile image
6357axbz in reply to

TY!

Jackpine profile image
Jackpine

Jacquitiani,

Not sure why your husband does not want to do chemo. I am 6 years in with a Gleason 4+3=7 and I’ve gone through most treatments including 6 LU 177 treatments.

I’m currently doing my second time through time through Doxetaxel

Jackpine profile image
Jackpine

Side effects have been minimal (mainly fatigue). I use a cool cap and have kept most of my hair and my PSA has dropped from 15.8 to 1.4 after the first 3 rounds.

I would encourage him to do the chemo

in reply toJackpine

That’s awesome news! Thank you so much

NurseRatched profile image
NurseRatched

My husband has dozens & dozens of bone mets; chemo is his friend!! It relieves his pain. Chemo doesn't bother him at all - it's the Nuelasta shot afterwards that kicks his butt. Tell your husband to try one dose of chemo, and if it provides relief, then he can get a port. I wish I could attach the photos I took of John at chemo, then 24 hours later - it says everything, the difference in his appearance is THAT dramatic!

FenBenGolf profile image
FenBenGolf

I was diagnosed with metastatic (bones, etc.) a little over two years ago. 6 Docetaxel treatments at 3 weeks apart. The Docetaxel resolved many of the lesions on my organs but didn't destroy the bone cancer. I was administered a double shot of firmagon at the time of the biopsy and had time release Lupron with the chemo. That kept my PSA to o.o6 and halted progression of the disease until late last fall (about 22 months after diagnosis

0. My PSA then began to creep up to around 3 and some of the spots in the bones began to grow again. I am now on abiraterone (Zytiga) along with Lupron. 1000 mg daily by pills. My PSA had dropped again to <0.03 so progression has stopped. Dr. said this typically lasts about 1 year then they have additional treatments. Prostate was not removed. I didn't get too bad with the chemo but was more tired. I do feel fortunate that they have been able to delay progression of the disease but, of course, disappointed that it still appears to be incurable. If you do Abiraterone you need to shop around for the best price. The first month was $2100 with the University pharmacy. I switched pharmacies and insurance providers (to Cigna) and got the cost down to around $2000 for the entire year.

savingdaddy profile image
savingdaddy

Hi! My Dad is stage 4 advanced as well and his PSA shot up to over 300. He did 10 cycles of chemo from August 2019 to Jan 2020. His PSA was brought down to 57 and 80% overall improvement to Mets according to his MO. My dad will be 77 next month and still worked as a car repairman through the chemo treatments. After the 4th treatment he did have more fatigue and would rest more and take a couple days off from work. He never got nauseated or vomited. He didn’t even lose all his hair (he attributes it to using organic coconut oil).

Not sure what’s next for my Dad as far as treatment. The chemo is taxing but bearable (his words). The MO wanted him to get Chemo in while he was pretty healthy so that’s why we all opted for chemo now versus later. Also, my dad did not have to get a port, which made the decision even easier for him:). Best wishes to you and your husband! Kim

zenbee13 profile image
zenbee13

Hi Jacquitiani,

I'm one week into my first cycle of Docetaxel.

A little background. I was DX'd in 2009 Gleason 5+4 and had the prostatectomy that year.

2010 PSA rose and I did 13 weeks on Salvage Radiation.

2 years clean and then PSA rose again in 2012 with small involvement in a couple of lymph nodes in the prostate bed. From 2012 until January this year it's been Lupron, or Lupron plus one of the androgen blockers.

Then the PSA began to spike again, and Lymph nodes in prostate bed showing cancerous growth. There has also been a great deal of pain throughout my pelvic girdle. So here I am. I was scared to death of the side effects. Well they aren't that bad! I'm one week in and really feeling decent. Yes, I'm tired, and while not exactly sick to my stomach, not a lot is appealing to eat either, and most of the pain is gone!

I am taking this as My Golden Ticket! Not all people wind up in remission, however I know if I do this with a sense of gratitude; Gratitude for the extra life, Gratitude for the chance of remission, Gratitude for the release from pain, and Gratitude to those, all of them in care team and friends and family, who are caring for me, I have a shot to be the one who is cured.

If you husband is in as much pain as I think he is, then the Monkey Brain is chattering so damn loudly he is having trouble tuning it out to hear his heart.

Think of it like your body torturing you with pain. Eventually all you want is for it to stop, your spirit can be broken, and decision making colored in the blacks and grays of your emotional state. I don't know him or his psychological, and spiritual make up, so I don't know if you need to lovingly nurture him, or kick him in the butt (Sometimes I need both at the same time :) )

Prayer sent that you find the right path,

Peace and Love,

Bees

grahaminator63 profile image
grahaminator63

Hello, I had chemo a few months after I was diagnosed and had 6 cycles of Docetaxel. The cancer had spread to multiple lymph nodes in my pelvic and thoracic region. The side effects of the chemo were predictable and manageable. I survived the treatment mostly because I went into the treatment believing it would help me get rid of the cancer. I concluded my chemo treatment in March 2017 and the following November, my scans were clear of cancer and have been clear ever since.

The main point I want to make is the attitude part. I believed the chemo was the right move for me and with the right support; meds, lots of sleep, and friends/family, I was able to get through it. I looked at the end goal not the pain points along the journey. Please encourage your husband that this kind of Chemo has minimal side effects with huge impact. It did for me.

Best of luck to you both!

Craig

paige20180 profile image
paige20180

Thank you for the question and I so appreciate all of you for your sage advice. Plan to share with my husband just in case.

peglovespete profile image
peglovespete

My hubby has been getting cabezataxel chemo for a year & his quality of life has been declining with every day. He’s so fatigued he can’t do the simplest of moves. His psa is going UP with this drug. We are going to stop all chemo & let him try & enjoy some semblance of happiness with his time left. I pray for you always. Peg V.

Garbonzeaux profile image
Garbonzeaux

Agreed, chemo ASAP

I did 6 rounds of taxotere a bit over 2 yrs ago (Gleason 10). It was very tolerable, and I've had undetectable PSA ever since. I didn't know about cold caps, etc. at the time, but when/if I do it again, I will make use of them.

Bodysculpture profile image
Bodysculpture

I had 6 infusions of docataxal and for me the the benefits far outweigh my fear I had initially If found it tolerable

My first 4 infusions were confusing because I felt quite myself 5 and 6 were different bit yet minimal

Loss of taste and fatigue mostly

That was November 2019

PSA is now 0.55

When diagnosed it was 13.5 but that tells us little because very aggressive cancer can show a low PSA such as mine

I pray wisdom wins in his case

Praying he makes the best choice and is with us for years to come

Leader4077 profile image
Leader4077

HelloI am Mike in the Seattle area. 16 and a half year survivor of PCa with cryosurgery in 2004, HIFU in Germany in 2016, SBRT(Cyberknife) in Seattle in 2019 and Firmagon in Seattle the same year.

Extensive bone Mets last month on bone scan and CT.....considering Docetaxel this week with PSA at 15. Liver scores all good, NO PAIN. Been doing cold water/iceimmersion (46-49 degrees F) for 7-8 minutes.....works GREAT.

If chemo and cold water combo are approved, I am going for the Docetaxel, either high dose every 3 weeks or low dose weekly.

Mike B

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