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Starting Chemo - Thoughts How To Manage Side Effects

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I am starting Docetaxel on Tuesday. My Lupron plus Zytiga failed immediately. MO says this is the next best step. I so appreciate all of you sharing your personal experiences with all of us when we have questions.

Please let me know any of your thoughts if you have time. Questions are:

1. Any Diet Changes - currently a very light eater?

2. What to do during injection - ice on hands, feet and/or head??? Other Thoughts?

3. Any thoughts on managing side effects the 20 days between injections? How to stay healthy and exercise I feel much better on Lupron the more I exercise.

4. Did the injections work for you???? How many sessions.

Thank you all for your input.

Tom

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tango65 profile image
tango65

Some info about chemo from a real expert:

grandroundsinurology.com/dr...

dockam profile image
dockam

Hi, I've posted quite a bit on HU. Please click on my pix and go through my postsFight on Brother

Randy

in reply to dockam

Thanks so much Dockam

Avanat profile image
Avanat

Tom,

My husband finished 6 cycles of Docetaxel in December. We read all the chemo tips on this site and others before he started treatment and we are sure they helped him avoid some of the worst side effects.

He iced his feet and hands to avoid neuropathy. He bought chemo socks via Amazon and held frozen water bottles while wearing lightweight gloves. He’s avoided neuropathy, except for a little bit of numbness on the bottom of his feet. He did have some numbness in his fingers but it’s already gone away. We expect the numbness to go away in his feet eventually too. He also bought a chemo ice cap to avoid hair loss but 13 days after his first treatment his hair fell out so the ice cap wasn't used for his subsequent treatments.

He also did a modified fast before every chemo treatment too, which is to supposedly aid the effectiveness of the chemo. We won't know until he has his first scans after chemo in March to see if treatment has shrunk the cancer. So far things look good as his PSA has come down every month. He also remains asymptomatic even though he has extensive bone metastases and some lymph node involvement.

He was lucky in that he didn’t experience major side effects except for fatigue. He did experience what we thought was thrush but he just found out last week when he saw a throat specialist that it wasn’t thrush but something called stomatitis. Apparently it was an adverse reaction to the immunotherapy (Opdivo) he is on as part of a Phase 2 clinical trial. The trial is to see if that drug will work on prostate cancer. My husband, Steve, is on this site too under the name Stevana if you want to message him directly with any questions.

Steve always felt good the first few days after chemo but had a chemo crash on the 3rd or 4th day after chemo where he felt especially tired. On those days he didn’t do much but after a day or two of rest he would be well enough to work in the yard, do a light work out, etc. Hopefully you will be able to tolerate the chemo fairly well, too. Good luck and I hope this helps you keep your cancer at bay.

in reply to Avanat

You are so niceThank you

Tom

mikell profile image
mikell in reply to Avanat

How did you manage the modified fasting when they want you to take the Dexamethasone (4mg twice a day day before, day of and day after infusion) and Prednisone (5mg twice a day) with food? They act insistent about this. I had been doing everyday 16 hours fasting everyday but now is seems I cannot use it for my infusion??

Avanat profile image
Avanat in reply to mikell

Mikell, My husband, Steve, also had Dexamethasone but only the day of infusion and there wasn’t an issue. He will be sending you a response with more info.

Stevana profile image
Stevana in reply to mikell

My experience was somewhat different. I received three tablets of dexamethasone right before my infusion of docetaxel. I did not receive prednisone. To be precise, I ate a sandwich of Turkey and cheese or ham and cheese ( minus the bread) right before my infusion. This was made available by the infusion center along with soft drink or water as well as ice chips to chew on during the infusion. I consumed solid food so I would not be receiving the chemo on an empty stomach. I continued with my modified fast as I posted earlier.

I have had experience with prednisone post chemotherapy because I’ve developed stomatitis from the immunotherapy drug (Opdivo) I’m taking as part of a clinical trial I’m in. I took this drug during chemotherapy .First Opdivo, then after a 30 minute break, during which received the dexamethasone, I then received the docetaxel. . As part of the clinical trial I am continuing with Opdivo for another 24 months. Prednisone was prescribed by my ENT doctor to fight the stomatitis which is prescribed to be taken with food. I’d recommend that you take your prednisone with some form of low carb solid food if you have to take it during your modified fast days. It is a pretty powerful steroid that will help fight off fatigue from the chemo. It will eventually wear off and you’ll experience a crash afterwards. Just rest for a few days when it comes and you’re strength will eventually return enough for you to resume your normal routine, to some degree. Staying active is really important to elevate fatigue and speed recovery. Good luck. It’s no walk in the park but most everyone gets through it without too much trouble.

Avanat profile image
Avanat

I wanted to add two links of many helpful hints about chemo from this site:

healthunlocked.com/advanced...

healthunlocked.com/advanced...

Maxx2006 profile image
Maxx2006

I used ice gloves and also put Hard as Nails on my finger nails as recommended by one nurse. I took one nausea pill the day before, chemo day and the day after. I was not sick at all. Beside tiredness at about week three after the injection for about 5 days, it was not too bad of a treatment.

in reply to Maxx2006

Thanks for the info Maxxx2006What was your nausea drug????

How did you feel for the 2 weeks after injection - before week 3????

Maxx2006 profile image
Maxx2006 in reply to

Week 1 I was just tired, by week 2 I was close to feeling fine.

in reply to Maxx2006

What nausea med did you take??? Did hard as nails help????

Maxx2006 profile image
Maxx2006 in reply to

Zofran for nausea, I did not loose my finger nails so I believe the hard as nails worked.

in reply to Maxx2006

Thanks Max. Bought some yesterday

Bodysculpture profile image
Bodysculpture

I had 6 infusions Docataxel 13 months ago And I found it tolerable

Exercise helps much much more than mentioned here

Fatigue and tastelessness were my main issues

Chemo makes you want to sleep all day

Dont

Whatever mobility you have use it

Walk run swim ride workout

And I guarantee you you will have a more tolerable experience

I cut out processed foods dairy and red meat

My PSA was 13.5 when diagnosed it is now 0.3

Having an MRI soon

I will keep you posted

in reply to Bodysculpture

Thank you for your feedback Body sculpture. You sound a lot like me I really like to get in the exercise . My PSA is also 13.5 and I want mine to get to point three just like you. Do you take anything else other than the lupron? Did you ice your hands feet or head during the procedure to avoid the neuropathy?Thank you so much again I really appreciate it and please keep me updated on your condition.

Tom

Bodysculpture profile image
Bodysculpture in reply to

No ice no socks or gloves I was 57 and fit so it makes I difference

Be positive and stay positive

I was raised in Barbados so ginger turmeric parsley and fish and many other herbs were used daily

Please keep it simple there is so much useless information out there still you get the best here lol

Do things you love to do stay mindfull of the small good things

They are closer than ever to finding a way to retard the progress of cancer no matter the condition that we die with cancer not from it

Loads of love and faith

in reply to Bodysculpture

Thanks you so much.God bless you

Woodstock82 profile image
Woodstock82

Echoing all of the above.

Docetaxel (Taxotere) is hard on the IV access site. In my opinion, getting a port installed is very worthwhile. There are two downsides. 1) There is an infection risk until the incision completely heals, and 2) the port has to be flushed once a month as long as it is in place.

Chemotherapy with docetaxel was not nearly as bad as I feared when I started. The side effects do build up over time, though.

Here are my notes from when I went through it:

1) neuropathy - tingling or even pain in feet and hands

What you can do to mitigate it: chill the feet and hands during treatment

Some go so far as to use ice in booties or mittens

2) mouth and tongue - sores, sensations, and changes in taste perception

What you can do about it: suck on ice cubes during treatment

I didn't get any sores, but my tongue would feel "scalded" for about a week

Changes to how things tasted were very noticeable, and thankfully temporary

3) nausea - gradual build-up as treatments progressed

What you can do about it: ginger for mild case. I tried ginger ale, ginger tea, candied ginger, and ginger candies. All helped.

Bland foods were easier.

If you are not allergic to pineapple, it is a good stand-by for when you can't eat anything else: simple sugars, easily digested, and tastes the same coming up as it did going down.

Later in the treatment, when the nausea was worse, I took a prescription medication "Zofran" (generic is odansetron), and that worked very well at relieving the nausea. I probably should have taken it more often instead of trying to "tough it out."

4) fatigue - gradual build-up as treatments progressed

What you can do about it: move, exercise, get into a routine, push against limits, keep morale up, rest when needed, stay hydrated, keep up nutrition.

5) hair loss - lots of variation

I lost body hair first, then scalp hair.

Later lost nose hair, which felt odd, had to blow my nose a lot more

Later lost half my eyebrows, and most of my eyelashes

The good news is, although it took some time, much of the above was temporary for me. It took about a month after my last docetaxel treatment for me to feel normal again, and the hair did come back. I still have some lingering tingles in my feet, but it's not bad.

One other thing. Each night before a docetaxel infusion I had to take an oral prescription steroid, dexamethasone. Then again the morning of the treatment. And then more dexamethasone by IV infusion before the docetaxel infusion. The result was that I was wired the rest of the day, had insomnia that night, was wired the next day, and then energy and mood crashed the day after that. Every one is different, but be prepared for similar effects.

j-o-h-n profile image
j-o-h-n in reply to Woodstock82

Great post WoodstockER....

Hang on to your hat cause here it comes:

Please tell us your bio. Age? Location? When diagnosed? Treatment(s)? Treatment center(s)? Scores Psa/Gleason? Medications? Doctor's name(s)?

All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU AND KEEP POSTING!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/20/2021 12:52 PM EST

Woodstock82 profile image
Woodstock82 in reply to j-o-h-n

I put some of that in my profile.

j-o-h-n profile image
j-o-h-n in reply to Woodstock82

Sorry, I must of leaped over it........Keep Posting. Thanks...

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/20/2021 2:19 PM EST

Mollygrace666 profile image
Mollygrace666

I just finished my 8th Docetaxel infusion , depends on the extent of your side effects , how your body reacts to it , early on I get bone pain , usually chest and jaw , then general fatigue , the symptoms get a bit more pronounced the more treatments you receive , or that is what happens to me , shortness of breath is a small issue now , I havent had any loss of feeling in my fingers or toes but they do tingle at times and my grip strength is a bit less , I drop things more often now , all things considered it hasnt been too bad and my PSA is on a good solid downward trend now , I still try to exercise everyday and stay useful at home , good luck , let us know how it goes

Stevana profile image
Stevana

Hi Tom, My wife posted earlier (Avant) and provided most of the details of my chemo treatment experience. I just wanted to add that the infusion center (Moffitt Cancer Center in Tampa) suggested I get a port implant (under the skin near your collar bone) for the chemo infusions. I elected not to since Docetaxel is not that corrosive to your veins and caused me no issues by taking it in the arm. I had no discomfort during or after using that method.

As far as fasting, I started with my noon meal the day before and resumed eating solid food at dinner the day after treatment. It wasn’t a complete fast. I had an electrolyte fruit flavored and water mix drink for breakfast and chocolate protein drinks between meals if hungry. I added a couple of small scoops of lo-carb ice cream and almond milk. For lunch and dinner I had chicken and beef bone meal broth. The theory is you want to reduce your carbs down below 30 so that the cancer cells are kind of starving. That allows the chemo to really attack them as they’re looking for energy. Who knows for sure how valid this is, but I doesn’t hurt to try it.

The other thing that most everyone experiences is the wave of fatigue that hits 1-3 days later. You will likely get dexamethasone or some similar steroid during treatment. This will help with nausea (I experienced none) and keep the fatigue at bay initially. When you crash don’t fight it too much, after about four days your energy should gradually start to return. You’ll feel fairly strong for the next 10 days or so just in time to start all over again. One thing you should be ready for is that the treatments are cumulative in their side effects so it will get progressively harder as you near the end. I developed thrush of the mouth at first, which was treated with Nystatin and later fluconazole along with magic mouth rinse. Hope this gives you some insight to help you thru the process. Good luck on your journey.

PS: drink lots of water throughout. Chemo really drys you out.

in reply to Stevana

Thanks so much Steveana to you and your wife for your input.Your real life experiences certainly help prepare me for the procedure.

Thank you.

Tom

j-o-h-n profile image
j-o-h-n in reply to Stevana

Another great post!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/20/2021 12:54 PM EST

Stevana profile image
Stevana in reply to j-o-h-n

Thanks j-o-h-n. I’m a new hand but like to contribute where I can.

Cooolone profile image
Cooolone

Thank you all... I started Docetaxel this passed Tuesday and the information is helpful!

I did the iced hands & feet, they somehow or another forgot I requested the cap as well. The cap is separate and outside insurance unless you chase it yourself. I'm not sure if there will be benefit now that it was absent for the first round (of 6). Still on the fence to do it or not, if it will actually help preserve the hair...

Anyways, those steroids... WOW! I could've built an addition on my house with a hammer and nails. That's some good stuff, lol! But then the crash... WOW too! Wiped me out, spent a day laid up (day 3), felt like puddy and just couldn't musta energy to do anything. And there's notes here it progresses? Oh boy, I hope not too much. Thought I was in pretty good shape, just shy of 57 and all. Been looking at dieting during, and the aforementioned fasting prior to each cycle. I also have some sensation like eating hot soup in my mouth. We shall see if that gets any worse.

Again, sorry to jump in thread, but is good information, thank you all!

j-o-h-n profile image
j-o-h-n in reply to Cooolone

Jump in anytime.....Always more room in the hot tub.......................

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/20/2021 12:57 PM EST

MarkBC profile image
MarkBC

I was 55 when I had chemo 2.5 years ago. It really helped knocked my cancer down. I hope you have the same success. The experience was not as bad as I expected. I did not use a port and had no problems with the injection needle.

Definitely ice your fingers. My cancer clinic provided ice gloves and they brought me a fresh pair halfway through, just as the first pair were warming up. I used to hate when the nurse came with the fresh icy gloves 😀 but it was necessary to stop neuropathy. I did not get the optional socks or cap. I did get some neuropathy in my toes but it went away after 2 months. I shaved my head when the hair started falling out.

One positive: I only needed to shave my facial hair once per week!

Severe fatigue on days 3 to 5. I basically stayed in bed or on the couch in front of the TV. I was back to normal by day 9.

Don't drink a lot of fluid before your infusion. It is difficult to go to the toilet dragging all the equipment with you. Drink lots of fluid afterward to flush your system.

It impacted my taste buds after round 5. I found apples were the best tasting food and I ate lots of those.

Best of luck.

j-o-h-n profile image
j-o-h-n in reply to MarkBC

Wow.... Also another great post.........Air force?

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/20/2021 12:58 PM EST

MarkBC profile image
MarkBC in reply to j-o-h-n

Thanks. I am in the Canadian Armed Forces reserves although I am in the process of releasing now. I guess I should update my photo.

in reply to MarkBC

Hail to our Canadian brother !

j-o-h-n profile image
j-o-h-n

This site is terrific!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 02/20/2021 12:59 PM EST

ron_bucher profile image
ron_bucher

I had 6 rounds of Taxotere 4 years ago and am still in remission. I started taking vitamins B6 and B12 religiously to avoid neuropathy.

I wore baseball caps most of the time because the nurse guaranteed I'd temporarily go bald. My hair thinned quite a bit (gobs would fall out in the shower), but my hairline stayed intact the entire time! I also wore gloves at night while sleeping. My theory was that good blood circulation might help. Whatever neuropathy I had was barely noticeable even when I was looking for it.

I had the same energy see-saw described by others. On a scale of 1-10, my energy was 11 (thanks to the steroids) for 2 days after infusion, and then fell off the cliff to 5. Within 5-6 days, energy was back to 9 or 10. Same thing happened all 6 cycles.

Make friends with the nurses. Most infusion nurses are angels. After my treatments, I brought everyone in the infusion center a very nice bottle of wine. They were as delighted as kids on their birthday. Giving to others is a great feeling and keeps up your spirits.

If your veins are difficult to stick, let them know in advance and ask them to have a vein visualization device available. My employer makes the best device accuvein.com.

For me, Taxotere was a piece of cake compared to Lupron.

Good luck!

in reply to ron_bucher

Oh Ron -I so hope my experience is the same. What about your diet ?

ron_bucher profile image
ron_bucher in reply to

I don’t recall changing my diet much. When I weighed in for my 2nd infusion, a nurse scolded me for losing 5 pounds, so I splurged on chocolate chip cookies for a few weeks. 🙂

HerbieP profile image
HerbieP

I'm only on my 4th docetaxel infusion but will do a quick share of my experience (I've got a short blog at whynotsmile.org that tells more of my experience). First, it's much less ugly than I thought it was going to be, my side effects are minimal. I'm on a mainly whole foods based pescatarian diate, I fast 3 days before the infusion and through the day after, I ice my hands and feet, I take melatonin proactively (every 4 hours), and I do IV vitamin C the weeks in between chemo (dunno if it helps but it doesn't hurt).

As far as fasting, I do the prolon fast mimicking diet starting on sunday as my infusion is on Wednesday and it's a 5 day fasting experience (it's referenced in one of the links the other guys shared with you). I bring my own ice gloves (w/frozen water bottles) and ice gloves as I fear neuropathy (start 15 mins before infusion, stop 15 mins after, replacing them every 25 minutes or so - I wear mine again at home for the first 11 hours). I've not done any ice chips (my place doesn't offer them) but I've not lost my sense of taste, nor have I had anything beyond mild nausea (take your anti-nausea meds proactively) chemo brain (forgetfulness and inability to multi-task), and the mild fatigue that wavers based on the day.

Best of luck, do the chemo, it's not what you may think from other folks you know went through it (both my oldest sister and brother died from cancer years ago - their chemo was debilitating but the additional drugs they give us now with the infusions help avoid most of that). My experience has been really nice, the staff are kind and informative, they handle all of my engineering mind questions well.

in reply to HerbieP

Thanks so my Herbie. Can you eat anything during your fast???

HerbieP profile image
HerbieP in reply to

I do eat as I do the fast mimicking diet (from USC) rather than a pure water fast (some are man enough to do just water but I'm not) - it's basically 1100 calories day 1 and 750 calories for the next 4 days. My BMI is right around 25 so I'm fine fasting. The Prolon fast mimicking diet is how I started (it also helped me change my eating habits to intermittent fasting which is reported to be beneficial).

Prolon is fairly expensive, around $220 for a 5 day fast ($44/day) where they provide all the food & nutrition you need (soups, olives, crackers, fast bars, vitamins, drink mix). The high cost of Prolon motivated me to not cheat during the 5 days. I've since adopted the hack here to save money: foodzie.com/2392/fasting-mi... I use soups made for folks recovering from bariatric surgery ("Bariwise" is the brand name) and miso soups.

in reply to HerbieP

I start my first injection Tuesday. I am a very active 73 Y/O - 6' - 185.Walk - lift light weights -golf - something every day here in Arizona - where the weather is PERFECT...

Eat VERY light - lots of fruit juice - Protein drink - some chicken or Tuna protein for lunch - soup for dinner every night for good digestion. Does your fast cut out all carbs?

Thanks,

Tom

Tonwantonga profile image
Tonwantonga

I just went through Round 4 of chemo last Tuesday. someone (on this forum, I think) said that sipping on Sprite with crushed ice during the infusion will help the taste buds - and it certainly did help me. almost everything I have eaten or drank in the last 5 days has tasted like it should - and more importantly - that constant metallic aftertaste for several days after chemo is missing this time around. I suppose any iced beverage might work. I have been lucky that I have missed out on the nausea that many experience, but the fatigue! Geez, you get up in the morning and you feel like you've run a half marathon already. loading a trailer full of firewood takes probably twice as much effort as it used to, and sometimes I'll feel ok for a couple hours and then it's like a barn door blew open in my face -fatigue sneaks right up and hits hard. the first week after chemo is rough, then the second week gets better, and that third week you almost feel close to what you remember 'normal' to be, and then you go through it again. lots of liquids after chemo - wash that stuff out of your system, don't forget the electrolytes, and don't forget to eat - small portions often. a big meal brings those hot flashes out, for me anyway.

in reply to Tonwantonga

Thanks so much ton wantonga.. I will keep you posted on my experience tomorrowThanks once again

Tom

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