Starting chemo and 'WORRIED'... - Advanced Prostate...

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Starting chemo and 'WORRIED'...

Mrtroxely profile image
59 Replies

hi all.

Starting chemotherapy in couple weeks.

Doxetaxel im trying be realistic and practical,

Im going to get side effects, just dont know which ones yet....

But, im trying arm my self with helpful experience and tips.

Clean water? thermometer and regular tests? Excercise? Possitive thinking? Hat???

I seem to be really worried about loosing my eyebrows.....people look weird and not them selves without eybrows? Any tips??

Thank you all

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Mrtroxely
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59 Replies
Polytunneller profile image
Polytunneller

As you say, it's difficult to predict an individual's side-effects.

I had Docetaxel in October 2016. Coming into winter is not the best time to try and keep clear of infections and I did need to go to A&E with suspected neutropenia once.

I'd had a DIY project in mind but waited for a week after the first dose to see what the side effects would be. I was lucky, and the Dexamethasone I was also dosed with supercharged me to tackle the project.

My beard thinned, as well as my eyebrows and receding hair. My goddaughter knitted me a false beard and you won't look out of place wearing a bobble-hat this time of year.

Positive attitude is great if you can achieve it with the support of those around you.

Chemo suite staff are fantastic.

tango65 profile image
tango65

Info about chemo for PC by a real expert in the treatment of PC

grandroundsinurology.com/dr...

Mrtroxely profile image
Mrtroxely in reply to tango65

thats a good possitive read, thank you

Brianne07 profile image
Brianne07

Hi quick run down I have 4+4 mets in lungs and some in the bones had an original PSA of 370.I am 73 and had never been in hospital except for a broken arm.Because it had already got out of the prostrate and into the blood stream .Professor started me on Firmagon Hormone therapy and about 5 weeks after that started chemo (Docetaxel). 6 sessions .

They asked me when getting infusion would i like the ice cap on head which stops you loosing your hair.I said yes, because i teach first aid for a living and did want people asking why i had hair missing!Retained all my hair and eyebrows!.

I had dexamethasone before and after infusion .I tolerated the chemo maybe better than most .No diahoerra ,nausaea (only once).Retained strong appetite.Tried to walk 3 times a week and some strength exercises.Also worked 2/3 times a week .Come home from work fall into bed sleep sometimes 12 hours .Listened to my body during the day and slept .I am sure the chemo affected my lungs or it could have been the covid i caught while doing chemo but i was exhausted walking up a small slope .Have a supportive wife who gave me massages pushing her nails into my feet and fingers which reduced the neuropathy .Had a lot of fruit smoothies .Make sure you have mouth wash with no alcohol in it .NOW!! six weeks later feel 1000% percent better off the chemo! Will start Zytiga in 2 weeks time .My PSA level is down to .1 I live in Australia and they are bring out the generic version .There will be days you will feel depressed but be like me and take each day at at a time and stay positive

Remember when you wake up tomorrow morning and your name is not in the obituaries your having a good day!!!!

Keep in touch if you want

Brianne07 profile image
Brianne07 in reply to Brianne07

EXCUSE ANY WRITING MISTAKES I WROTE THE ABOVE IN A HURRY! NB keep a small hand diary very helpful in writing down telephone numbers ,keeping track of medications medical appointments scans etc.I started the diary from day 1 also purchased an oximeter which gives pulse rate and Oxygen levels.Already had a temperature reader and purchased scales .I wrote down every day how i felt .My weight only varied up or down 5 kgs ,As mentioned by others keep well hydrated .I was peeing 5/6 times a night .You may get a little bit of balance problems and a little bit of foggy brain. But once the chemo is complete hopefully feel a 1000%.Best wishes Brian

Mrtroxely profile image
Mrtroxely in reply to Brianne07

thank you

TeleGuy profile image
TeleGuy

I was really worried until I got my first infusion behind me three weeks ago. It kicked my butt in ways I didn't expect. I expected to feel ill, nauseated, but it was really a week of feeling as if I had been run over by a truck. Exhausted. But not as bad as I expected.

Every day I could tell that I was feeling a little better until about a week after the infusion I felt ready to take on the world again-- and I am almost giddy that I feel as well as I do!

My hair is falling out on cue, but I have the 'cap' lined up for my successive treatments, it's supposed to help even reverse it while on chemo. I used an off-the-shelf cold cap for the first time that didn't really work.

So I'm back to feeling grateful, hopeful, and busting my butt getting everything done that I can during this period between treatments. And I hope that you will, too!

ron_bucher profile image
ron_bucher in reply to TeleGuy

My experience in 2016 was very similar. Energy level with steroid was 11 on a 1-10 scale until two days after infusion when it dropped to 5. Each day it increased a little and a week later my energy was normal. My energy fluctuation on each cycle was the same. My hair thinned but I didn't lose my hairline or eyebrows. I worked full time and wore hats. I think it really helped to exercise daily.

Mrtroxely profile image
Mrtroxely in reply to TeleGuy

thank you

spw1 profile image
spw1

Hi as you are in the UK, the procedure may be like my husband had. He had 4 infusions of Docetaxel and although it did not unfortunately work for him, he only lost a bit of hair after the first infusion. No eyebrow loss noticeable. He was fatigued and tired about 3 days after the chemo. They gave him Dexamethasone tablets 12, 4 and 1 hour before chemo. Prednisolone for 21 days after. When Dexamethasone wears off, you feel fatigue. The whole thing is a surreal experience, as I went with him. The chemo ward was crowded (we did it in the NHS hospital). The first time we waited for over 2 hours in a tiny crowded area, but some other times it did not take that long. Saturdays were less crowded. A very lovely tea lady/guy comes around offering tea and coffee and sandwiches, biscuits. The nurses are great and v hard worked. Take your own cold socks, etc (we did esp for hands mittens as we wanted to avoid neuropathy in the fingers for my husband who plays and composes on the piano). I took really cold things for him to sip on and drank the NHS hot drink myself! I do not think that there is science behind it but if people suck on ice chips through chemo as I read here. why would one give a hot drink during chemo. I wish you the best and at your age, chemo should not be a problem. Our MO said that to my husband at 57 (adding, 'you should see the frail kind we have to give it'). Keep up as much exercise as you can, take in gingery tea/soups etc if you feel nausea. My husband was given injections to take in the stomach 24 hours after chemo for 5 days. He went everywhere to shops and parks and so on without a mask.

Mrtroxely profile image
Mrtroxely in reply to spw1

thank you

larry_dammit profile image
larry_dammit

good morning warrior, stage 4 here august of 2016, chemo then and all the. Good things since. To coin a phrase. DONT WORRY BE HAPPY. ! I found ignorance was bliss on my part when I started the chemo cycle. So much more to worry about than a little hair 🤪. Or in my case all of it! As long as your on the right side of the grass your a winner. If you want eyebrows just have someone draw them on. I still don’t have any and my dear old mustache is a 1/4 inch long and blonde 🤬. Won’t grow. What can I say 😖😎😎😎

Mrtroxely profile image
Mrtroxely in reply to larry_dammit

hah! Problem with drawn on eyebrows is you need pick an expression your happy with!

Think evil eyebrows.....

AlvinSD profile image
AlvinSD

I am having round 5 of 6 on Monday. I’m fine until Tuesday evening when I start to feel tired. Wednesday and Thursday I’m exhausted. First three times, I was fine by Friday. Cycle 4 I was totally beat until Saturday.

Hair on my head started falling out 2 weeks after the first treatment. I just had everything buzzed off and wear hats. I ice my hands and feet which has helped stave off the neuropathy so far. Stay hydrated! Keeping well hydrated after chemo also really helps me to feel better

For me, the effects of the ADT are far more impactful than the effects from the chemo.

Mrtroxely profile image
Mrtroxely in reply to AlvinSD

thank you

Woodstock82 profile image
Woodstock82

Chemotherapy with docetaxel was not nearly as bad as I had feared before I started. I had many of the most common side effects.

The steroids before and during each treatment meant that I was wired that day and the next, and then my mood and energy crashed for the rest of the week.

I didn't get thrush or mouth sores, but my tongue did feel like it had been scalded for that first week after each treatment. There were significant taste perception changes, none of them pleasant. Some people chew ice during treatments to reduce the mouth problems. I like the theory, but I don't know whether it really works.

Nausea became more of a problem as treatments progressed. Ginger (ale, tea, candies) helped somewhat, but eventually I needed the prescription anti-nausea meds.

Neuropathy in fingers and toes built up over time. Some people chill the feet and hands during treatment. Again, I like the theory, but I don't know whether it really works.

Fatigue became a problem with the later treatments as well. It was an odd feeling when walking to have my knees wobble and my legs shake, but not be out of breath at all.

I had the expected hair loss. Body hair first, then scalp hair. What surprised me was when I lost eyebrows, eyelashes, and nose hair. It took a few months, but eventually it all grew back.

I didn't lose any fingernails or toenails. I am glad to have been spared that.

Week 1 starts great, then finishes awful. Week 2 usually has gradual improvement. Week 3 is almost back to normal. Then you get to do the cycle all over again.

It's a marathon, not a sprint. Take care of yourself. Conserve your resources. Stay hydrated. Stay fed. Stay rested. You can get through it.

Kittenlover50 profile image
Kittenlover50

morning. US. I might be repeating some things. Bill had 6 treatments. Starting losing hair the 14 th day. Did lose it all. Some wear ice bonnets to slow it down, he chose not to. It came back in, Curley, and his usual full head. More white though. ( his mother was white hair). No other major side effects. 2 spontaneous nose bleeds towards the end. Did not have a port. Had two small chemo burns. He had an auto inject of neuralasta 24 hours after each treatment to maintain white blood cells. His was before Covid, but during flu season, so did stay away from groups etc actually did wear masks in groups. If not vaccinated, be careful.

Doc did recommend a protein nutritional drink daily. Be careful, if buying them, look at carbs. Some are really high.. and sickening sweet. He said we would need it no matter what kind of treatment he would be having. I morphed into making a plant based, unflavored protein that I get on Amazon. I get unflavored as no fake sugar in it. I add spinach or kale, some broccoli sprouts I make, parsley, chia seed cinnamon, local raw honey, frozen red and blue berries. Still making it after 6 years. We stuck to our bucket list, he did his walks and biking. May your road be smooth. ,

rsgdmd profile image
rsgdmd

I have chemo #5 in two days. Like those who have already written, it hasn't been too bad. Haven't had any nausea; have had constipation after 2 -4th round. I take fiber tabs a couple times a day starting day before. Day after I feel fine, due to the steroid. Next day feel tired, joints and bones ache a bit, day 3 is a little worse and then starts getting better. One 1st couple I was fine by day 5, last couple took another day. I still try and get out to walk every day and continue my weight lifting routine, though with lighter weights.

I've gotten thrush every time, usually around day 6. Not sure if due to the steroids, but use nystatin liquid 3X a day & clears up within a few days.

Real important - ask your doctor about Neulasta (or one of the biosimilars). One week labs after 1st chemo showed I was severely neutropenic. Took another full week for numbers to get back to close to normal. Fortunately, I didn't get sick, but I also hunkered down and stayed away from people. Since then, I self inject Ziextenzo (biosimilar to Neulasta) 24 hrs after and my one week white counts have been fine. If you use, take Claritin or Zyrtec the day before, day you get the Neulasta and 2 -3 days after. Reduces major side effect which is bone pain.

My hair started coming out in clumps about 12 days after 1st chemo & had wife shave my head. Still have eyebrows, though they're a bit thinner. Use ice shoes and ice packs for fingers and hands, but still got some peripheral neuropathy. Not too bad - might it be worse without the ice??

Finally, drink a lot of water day before, day of and couple days after. Want to be well hydrated for chemo and then get it out of your system afterwards as quick as possible.

Good luck.

Leader4077 profile image
Leader4077

Hello

Did 6 Docetaxel infusions in 2021. Will get my 7th infusion tomorrow for a total of 13 infusions in 2021-2022. Stopped chemo in May 2021……started Zytiga and Prednisone in September 2021…..didn’t work so chemo started again in May 2022.

Bottom line, PSA went down after EVERY infusion………stayed on Orgovyx and Zometa throughout 2021-2022.

BTW-Dexamethosone really does give you great energy for a day or so.

Mike

Seattle

Vangogh1961 profile image
Vangogh1961

I was 9 in 9 cores out of 12 PSA 15.4. Started ADT and then chemo a month later. I lost my hair after the second dose, even with an ice cap. I had a little neuropathy, mostly just tingles that have gone away. I had fatigue, but worked full time and only missed a couple of days. I read about modified fast 48 hours before and 24 after and it seemed to help with the last 3 doses. I attempted to exercise, but some days it was simply 5 minutes on the exercise bike. I had no diarrhea, but I had a spaceoar put in. I had more frequent trips to the bathroom through the night, but only an extra one or two.

Since then (I also had radiation), my PSA <.1, NED on scan. I exercise daily and still work full time. The hair grew back, even though I choose to cut it short, and most days I almost get through it without thinking about my diagnosis constantly.

Wishing you the best on your treatment.

Vacation 1 year after chemo.
in reply to Vangogh1961

Great pic! My favorite artist is vangough and I’m from that year 1961 myself ? Keep rockin! 👏👏👏😎

EdBar profile image
EdBar

I had Doxetaxel back in 2015, yes it kicked my butt. First infusion or two wasn’t too awful I was able to work during them, the back half were pretty tough. Get yourself some hats you’re gonna lose your hair, you’ll probably lose your eyebrows, so get a pair of glasses, you can get them without prescription lenses, they’ll cover your loss of eyebrows. Yes people gonna look at you cross eye but you’ll get over it and learn to wear your baldness as a warrior. For me it took away the pleasure of eating, the inside of my mouth would peel and food was rather tasteless. My fingernails got lose and funky. I still walked and exercised during that time - it helps push the chemo through your body more efficiently. During that same time I was diagnosed with a second cancer, melanoma, and had to undergo Mohs surgery on my face, it was probably one of the toughest stretches in my life. But I got through it, lots of praying, supportive family and good doctors. I’m still here, my hair grew back on my head better than before, not so much for my eyebrows or other parts of my body but whatever, lol. Hang tough, as my son told me - “keep grinding”!

Ed

Muffin2019 profile image
Muffin2019

Had chemo in 2018, very few side effects, lost body hair, thinning of my hair on my head, kept clear of fried food, lots of protein, vegs and fruit. Keep a positive attitude, you can do this, still worked part time. Going through chemo again now, keeping body strong, lots of protein, diet similiar to before but a little more side effects but still working part time but hopefully retiring soon at 71 if they can find my replacement at work.

MateoBeach profile image
MateoBeach

chemo indeed sucks. But it helps you to live longer. So we endure it and come out stronger cancer warriors on the other side. If you lose your hair for some time, wear it proudly.

However, if you start to develop peripheral neuropathy, don’t continue. Stop the series and discuss options with your MO. Perhaps switch to cabazitaxel, but no more docetaxel. PN is one terrible effect that is permanent.

maggiedrum profile image
maggiedrum

Docetaxel has been presented to me as an option since I cannot tolerate ADT which means I am not eligible for other treatments (as of right now). I share your concerns and more. Good luck with your decision and whatever side effects you have.

GummyToad profile image
GummyToad in reply to maggiedrum

what does it do to you that ADT is intolerable?

maggiedrum profile image
maggiedrum in reply to GummyToad

I've had Bipolar and Unipolar major depression my whole life. It has a definitive monthly cycle which I long suspected was related to monthly hormone fluctuations. This happen to men as well as to women. Testosterone is the main male hormone which causes these changes. My depression is always bad but it goes from bad to very bad once a month.

I refused to get on ADT because of my fears as to what it would do to completely lose my testosterone for months at a time. When my PSA started to climb to 12.5 from 8+ over a three month time I finally agreed to start Lupron after being hammered by my oncologist from the very first time I saw him.

I got a 3-month time release Lupron injection in early September and two weeks later I went in to the worst depression of my entire life which once before had included considering suicide which prompted me to start getting help at a mental "health" clinic which I had been going to for the prior 6-7n years. I am classified as treatment resistant since no meds have been found that will stop my depression. I get some help from what I take now but it is still serious and I stop be social for two weeks every month, both before Lupron and after my testosterone returned 11 months later.

While my testosterone was at near zero I became almost catatonic, staying in bed most of every day. I stopped doing all projects which previously had been my most successful "antidote" to my depression. I lost all motivation for everything. My personal hygiene became very lax. I would almost never go out with friends or even communicate with them electronically. I had strong thoughts, urges even, to commit suicide. It is a miracle that I did not.

So the ADT ruined my life as a human being. And it did not wear off for 11 months despite supposedly working for 3 months only. I met with the cancer clinic's psychiatrist and other staff. The common approach for any cancer patients who have depression is to get professional help and be put on psych meds. Since these already were not helping me there really wasn't any solution to my depression. Interestingly, my bipolar changed to unipolar, meaning depression only all the time. Even so, my oncologist still told me I had to remain on Lupron to control my PCa. I told him I would rather die the next day than to go through one more day of the depression I had.

It's been a year since then. My PSA is going up again. The Lupron ADT did stop my PSA in its tracks. But I will never take it again. I think it would kill me much quicker than the cancer will. So that is why I consider ADT intolerable. I don't know if I had any other side effects, like hot flashes, etc., since the depression just dominated me physically and mentally. Because you are only qualified to start other PC treatments, like the castrate-resistant meds, or PSMA radiation therapy, if you are proven to not be helped by ADT I am now in a twilight zone and all I can do is monitor my PSA unless the FDA and the medical world and the insurance world come up with other therapies that are approved for hormone sensitive patients, like me.

maggiedrum profile image
maggiedrum in reply to maggiedrum

My oncologist did have my DNA tested and I don't have any mutations that are known to cause the cancer so I won't be treatable via the new meds for those conditions. My oncologist will prescribe chemo at my discretion. QOL is my primary concern for whatever time I have left and I don't think I will ever start chemo. It does not always work and it only slows down the cancer in any case. I am at peace with my situation. I don't intend to do any therapy that harms my QOL in any significant way. While I am alive I want to live.

GummyToad profile image
GummyToad

my hair came back better than ever after chemo ... so look forward to that. Worst part was the week of constipation, so stay on top of that for sure.

dockam profile image
dockam

Hey Brother, check my lack of eyebrows :-), no one has noticed until I point it out

I think that since I wear glasses, that distracts from them being missing since 2015

#nohairdon'tcare

I fasted 2 days prior to each of the chemos: 15 Taxoteres in 2015, 6 more in 2020, and will have #16/18 Cabazitaxels on 10/07

tcr.amegroups.com/article/v...

I also do squats, leg work outs, and even just stand up and dance during chemo. The nurses have started counting my squats :-). And I do a hike that evening also

FYI: zerocancer.org/blog/ive-bee...

Hope for the Best, but prepare for the Worst

Fight On

Randy

Eyebrow pic :-)
in reply to dockam

hahaha , mama ! U da man! 🙏❤️❤️❤️❤️✌️

dockam profile image
dockam in reply to

youtu.be/DTCyjYjsVc8

treedown profile image
treedown in reply to dockam

Randy when does your book "Surviving Chemo" coming out?

dockam profile image
dockam in reply to treedown

LOL, Yes a crazy number of chemos, 36 so far with three to go!

I'm no writer :-), and dunno if anyone would wanna print them up.

HU will be my vehicle for my musings on dealing with #stageivpca along with whatever song lyrics pop in my head

youtu.be/Wmc8bQoL-J0

Fight on Brother

treedown profile image
treedown in reply to dockam

I am making notes from your posts and replies but I don't think I have allnof your tricks down yet. I hope to before my time comes. Your my inspiration.

Fighting on!

dockam profile image
dockam in reply to treedown

Mahalo Brother, that's one of the reasons that I love HU. We can share our treatments, meds, and experiences, and then pick and choose things that may work. I also post links to research to back up my actions.

So, fasting 2 days before chemo, exercising during and after the sessions, daily 16 hour Intermittent Fasting. Plant based diet(many variety of colors), lean protein, and whole grains

But, despite all those chemos, PSA went from 4.2 to 5 in 3 weeks. Kaiser Medicare finally okayed a PSMA, which I have next Weds. Fingers crossed.

If anything large enough like in a lymph node, biopsy and do genetics on it. Then maybe radiation

Live long and Prosper 💙

Randy

treedown profile image
treedown in reply to dockam

Sending positive energy your way so they find something actionable.

Never surrender.

dockam profile image
dockam in reply to treedown

Mahalo for good vibes

youtu.be/B0yoiBYbT2I

It is the fear factor brother . We all feel that with a #4 dx. Until you put it down . And you will . Fight , fight ,fight hard for yourself not against yourself . Don’t feed into negativity or bad stats given . You can do better than told . I did a lot of alt med diet and nutrition with high Thc dosing my first 4 months while in imrt .Many members have done well with chemo . You can also . I relate to you because I as just 53 upon dx and felt ripped off . I’m now 61 .. Go 8nto treatment believing that it will cure you…. It can . We pay the piper but when it works it’s worth it . I am sorry to see anyone as youn as you getting this ol mama disease. Hang in there do only good things to yourself from here on out . Bad habits should all go out the window now . Live heslthie4 than ever before . Yo7 could see a cure for 5his bs coming down the pike in years to come . Never give up on self . One goal is to cut off your testosterone , and that a charming event for a young man . I suffered mucho but somehow pulled through . You can too . Save yourself, keep getting answers here and roll right over that pc .

Mrtroxely profile image
Mrtroxely in reply to

Thabk you

CAMPSOUPS profile image
CAMPSOUPS

Lots of good replies here.

Don't be worried. (yea, easier said than done). If you are really panicky about it just remember you can quit anytime. You can quit after the first infusion.

For me my head was spinning at diagnosis with PSA 1621 and mets from skull to shins. I was no expert on chemo but I knew it was some powerful stuff. When I was told it used to be used towards the end but stampede trial showed benefit when used up front I really felt I had a good chance to put the devastating diagnosis on hold for a bit. When I see guys contemplating pro's and con's of chemo for themselves I can only surmise that unlike me their diagnosis hasn't scared the shit out of them.

Maybe it was good I hadn't found the forum here yet when I started chemo. I went with what my MO said. "What I can do during chemo will be up to me, probably can continue to work from home as I was, SE's won't be as significant as chemo for other cancers, will have most SE's for about a week after each infusion etc."

I think a couple things helped me soldier thru chemo. I knew with my diagnosis I needed some powerful treatment. Also thru out chemo I made sure not to consider myself a "chemo patient". I never hung out in my pajama's all day, alway got dressed. The times that I did present as a chemo patient were in the infusion center with my stocking cap. Felt proud or something to be among the chemo warriors.

I took on side effects as they came and fatigue presented a little more than I thought it would. Always a work around for different side effects.

Mrtroxely profile image
Mrtroxely in reply to CAMPSOUPS

Hah.

I hear you.

I spent months pissing deep claret blood, ejeculating blood and gore and living with debilitating fear with no help from the docs...

I feel ok at mo, just the hormone injection side effects.....my fear is getting chemo and ruining how I am at mo....

I wont even be able look sad with no eyebrows!!!

But I do listen to real honest experience and advice from you all on this site, I trust it, I can get on board with it. The advice and experience says just go for it(they can stick my eyebrows up there arses)

EdBacon profile image
EdBacon in reply to CAMPSOUPS

I laughed when I read your comment about never being in pajamas all day. Up until today, that was true for me too. But I must confess, today has been one of the roughest days for me on chemo and for the first time I stayed in pajamas all day.

Mrtroxely profile image
Mrtroxely in reply to EdBacon

Should I buy pyjamas?

EdBacon profile image
EdBacon in reply to Mrtroxely

Good to have something loose and comfortable for lounging around. From my experience, there are days on chemo when you need to just sit around and rest or take a nap.

I'm already feeling a lot better than my pajama day, yesterday. And the cancer pain has gone away, at least for now and that's a big plus for me. Those of us who have pain from the cancer can see an overall improvement in QOL with chemo. The pain in my hip is generally worse than the chemo side effects. The chemo side effects go away fairly quickly too so it's well worth it IMO.

CAMPSOUPS profile image
CAMPSOUPS in reply to EdBacon

Oh man sorry to hear. The Cab was going easier for you than previous Dox chemo.

Honestly I am a lazy or incompetent writer lol. I think I did have some days where I was pretty much in pajamas' for the day. I think it was the couple times I had to give birth to fecal impactions. Very exhausting. Kind of said well I need rest today take it easy.

And even though I usually got dressed I did nap on many days.

For me it looks like Dox chem again in a couple weeks (last time was winter of 2020. No cab chemo. I am not quite the same guy I was back then physically and mentally so a little worried myself but hey we shall see.

EdBacon profile image
EdBacon in reply to CAMPSOUPS

I'd say the Cab is still going easier for me, but this cycle seems to be a little more difficult compared to the last 2. I think my third cycle of Docetaxel was also difficult if I remember.

Curious as to why you are going to Docetaxel vs. Cabazitaxel. I'm sure you'll be fine with either and you can always go to Cab if Dox doesn't work. Wishing you the best with your chemo.

CAMPSOUPS profile image
CAMPSOUPS in reply to EdBacon

Glad your coming around a bit. Yea with Dox I did feel the accumulating effect so 3rd + infusions were a little more heavy in SE's.

Yes it would seem curious that I am embarking on Dox again. Not quite carved in stone.

I knew the day would come when zytiga no longer did the trick and with my persistent diffuse bone mets knew chemo would be in the cards again. I too thought well at least it seems most go for Cab the 2nd time around.

However the other tx that works well with diffuse bone mets is Ra-223 and I was offered to apply to a trial (not confirmed as accepted just yet) that has Dox as base with possible addition of Ra-223 and unblinded so I will know if I got the Ra-223.

So anyway I might have the benefits of a trial with or without the Ra-223 (extra scans, labs, extra medical care, etc.) Hope I get the Ra-223 it has mild brief SE's after treatment and if given in the trial my Dox dose will be less than standard at 60 mg/m2 instead of 75 mg/m2 so with the Ra-223 theoretically less chemo SE's. Either way 10 infusions which might be a bear as I had 6 in 2020.

Apparently the Dox since it worked so well for me 3 years ago is still a good bet to work well again. I also still have lymph involvement which Dox should work well on.

Despite becoming all in for the trial when it was mentioned I did ask about the alternative of Cab and heard something I never heard before which yes less SE's but harder on the bone marrow. I still have a hmmmmm to that. But anyway yea I had set myself on possibly lower SE's with Cab but yet the basis for Dox in my diffusely metastasized case and the trial and possibility of Ra-223 added have me not feeling too bad about this treatment venture.

You probably know that Ra-223 (Xofigo) is approved stand alone tx.

Dora trial 3 minute video: pcctc.org/studies/dora/

clinicaltrials.gov/ct2/show...

But hey we'll see as I am not even in the trial yet and should know in about a week. If I don't get in the trial I may further discuss efficacy in my situation of Cab vs. Dox again and or other treatments. Enough of my blabbing for now ha.

EdBacon profile image
EdBacon in reply to CAMPSOUPS

My doctor recommended going to Cab because my PSA started rising within 6 months of stopping Dox and he feels that Dox was not effective because of that.

I also considered R223 but you can't have LU-177 after it so I decided against it since I want to do LU-177 next. You can have R223 after LU-177 so it will still be an option for me down the road.

Bone marrow suppression is an issue with Cab, although with the new dose of 20mg per square meter (PROSELICA Trial), the risk is significantly reduced and actually may not be any worse than Dox.

Let us know where you go with the trial, treatments etc.

CAMPSOUPS profile image
CAMPSOUPS in reply to EdBacon

Thanks good info.

Yea I got a year out of the first chemo tx vs 6 months and it knocked things down quite a bit before then moving onto Zytiga which lasted a year.

I thought I had seen an "out" when it came to no Pluvitco after Ra-223 or maybe it was by meeting a time requirement.

CAMPSOUPS profile image
CAMPSOUPS in reply to EdBacon

Well Ed unblinded trial so I found out today I wont have the Ra-223 with the Docetaxel.

Start week after next. Have a bit of nervousness as I am not as strong as I was 3 years ago during first chemo treatment and I've become somewhat of an old hand at having this diagnosis vs. when first diagnosed "please give whatever to me". To top it off this will be 10 infusions at the 75 mg/m2 dose, not 6. Hopefully I will get my chin up and shake this shit off attitude going soon lol.

EdBacon profile image
EdBacon in reply to CAMPSOUPS

I understand the apprehension, I'm 6 years older than my first 6 rounds of chemo. I can feel that, but just have to put one foot in front of the other. I'm sure you've learned that too. It's hard for me to think about 7 more cycles, so I just focus on today's cycle and how things are right now. Remember, you are only signing up for one cycle at a time.

Better to give the cancer hell with the higher dose I say. You also won't be "shoulding" all over yourself later with thoughts like "but what if I had done the full 75mg?" You can always reduce the dose if you need to anyway.

Personally, I don't think you are missing much not having Radium 223. You can always have it later and also LU-177 is better. My doctor called it a "smart bomb" at my last appointment.

Wishing you the best and keep us updated.

EdBacon profile image
EdBacon

I understand your worry, we all go through that before we get our first cycle of chemo. But it's really not worth much concern, no more than worrying when you start coming down with cold. Yeah, you'll feel sick for the better part of a week, but it's likely you'll tolerate it well. We've all been through being more sick than the first week of chemo. After around 5 days you start feeling better. It's really a small price to pay if it works to kill the cancer. I do get a certain amount of satisfication knowing that while I'm suffering, I'm hopefully giving the cancer even more misery. Fight on!

By the way, I'm on my worst chemo day of the cycle as I write this.

Mrtroxely profile image
Mrtroxely in reply to EdBacon

Thank you.

Are you still on xandi.

Also is cabixtaxel lesser than doxetaxel (taxotere)

EdBacon profile image
EdBacon in reply to Mrtroxely

Not on Xtandi.

Cabazitaxel is around 1/2 the side effects of Docetaxel for me. I get a bit more tired with Cabazitxel, but all in all, it's easier.

Doseydoe profile image
Doseydoe

Its not so bad. I had 9 bags of Docetaxel pumped into me. The steroids help by making you feel pumped but expect to have a downer after they wear off. Sleep when tired, drink more water than usual and try to eat something at each meal time. I ate a lot of banana sandwiches. Try to get out for at least a 20 min walk everyday. You have cancer, so your allowed to be sick. So rest and take stock, reflect and read up on your new reality. Its a lot to take in so be kind to yourself and your loved ones. The first year is the hardest as you have to hit the beast hard. Its scary and everyone is worried but you will get back to a kinda new normal, you've got this. DD 😎, cheers.

Mrtroxely profile image
Mrtroxely in reply to Doseydoe

Thankbyou

Izzygirl1 profile image
Izzygirl1

We were worried too. My husband has his 2nd dose of docetaxel next Tuesday. Worst symptom was fatigue but it wasn't that bad and he feels very good this week. We did the ice packs on his feet and hands. He lost a lot of hair on day 13 so he had it buzzed and he looks great. I brought a blanket for him to the infusion place and I made him drink lots of water the day before, the day of, and the day after. He is also taking darolutimide and getting a Lupron shot every six months. I hope your treatment goes well !!!

Mrtroxely profile image
Mrtroxely in reply to Izzygirl1

Thank you

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