Hi,
Was on Zytiga for 4 weeks. Too many bad side effects.
headache, aching joints, very bad balance, extreme fatigue, heart racing at times, increased frequency of urination and increased hunger gaining 9 lbs in 4 weeks.
My MO took me off Zytiga. He’s letting me take my 10 day holiday in Aruba and start docetaxel upon my return.
Any pointers on the chemo? Will I lose my hair? Anything I can do prior to treatment or during treatment to lessen the side effects?
Thank you very much!
Was it working? If so, you could try Xtandi before doing chemotherapy. Many on this forum have gotten years out of Xtandi. Just a thought.
I see you are from the Bay Area. Hopefully you have Oncologists that you trust? I too live in the Bay Area. There are some very good ones here. As far as your hair that has been the least of my worry. I had stage 2 breast cancer 17 years ago. I had a radical mastectomy, radiation and chemo. I lost my hair. Came back better than ever. I am now stage 4 APC. Whatever direction my oncologists have for me I go with that. I'm confident in their decisions. Depends on the treatments so far when hair stays and when it goes. Bottom line I'm still here. (I have a haircut scheduled for Friday). Enjoy your vacation then come back strong.
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, most of it just before the 2nd infusion. What surprised me was when I later 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.
Thank you very much for the information and words of encouragement. Did you have weekly treatments? My doctor is planning treatment every 3 weeks over 15-18 weeks.
Infusions were every three weeks, that's pretty standard. I only had six infusions of docetaxel, but I have read accounts of some patients who have had many more.
See my profile for more details.
Sounds pretty damn familiar, lol.
Chances are you will loose your hair. Good news it will probably come back thicker. My husband just finished 10 sessions of Chemo and with the exception of a few side effects, mostly fatigue he handled it well. I woul encourage you to drink as much water or fluids as you can before and after Chemo. If your Oncologist prescribed Prednisone with the Chemo please be sure to take it. The tough part for my husband now is being weaned off prednisone. Prednizone withdrawal can cause many side effects one being joint pain We have been told once he stops taken it entirely it will take a few weeks to feel better. Another word of advice if you drink alcohol stop drinking or enjoy a beer or cocktail from time to time. Sending positive energy the Chemo will be successful for you with little side effects.
A must read list of tips by AlvinSD right here:
healthunlocked.com/advanced...
Simple, concise, good information.
Welcome to the chemo club, I had my first dose on January 6. Have had most of the expected symptoms, but all mild this time. No hair loss yet, but scalp rash. Taste is off. I wish I’d done a better job preparing my ice packs and sucking on ice during the session.
Hi Mark. Sorry to hear that the Zytiga didn't work for you. I started that a few months ago and have had a great response.
I won't repeat some of the good advice that others have written. Docetaxel wasn't as difficult as I expected and it really worked well to knock my cancer back. I had the fatigue, and hair loss that are typical. I shaved my head once the hair started falling out. I lost most of my body hair too. My hair returned but a little thinner than before. My eyebrows and eyelashes did not grow back. Nobody notices because I wear glasses. I have less body hair now that I did before chemo.
Ice mittens were provided here in Canada. Just as they started to warm up a bit and became bearable, the nurse would bring fresh mittens from the freezer. I used to hate that moment. 😀 I didn't protect my toes and did eventually lose feeling in them. It came back gradually after the treatment stopped. My taste buds were impacted during the last two infusions. I found that apples and milk tasted really good when other foods didn't.
Hydration is important but I didn't drink water before the infusion. I did the first time but found it difficult to drag all the equipment with me when I needed to pee. I drank lots of water after the infusion.
Good luck. I hope it works.
On a side note, my partner and I love San Francisco. What a nice place to live. We were there last May and can't wait to go back. My partner is there right now for business meetings.
Hi MJCA,
I have survived 23 years so far. Outlived 2 oncologists in that timeframe. My treatment started with prostatectomy, Cassadex, 36 radiation treatments, Hormone treatments every 12 weeks; Provenge, Zytiga for 5 years; 6 months Radium 223; now on Chemo #12. I worked all during that timeframe and retired 10 years ago BUT took up my interest in the accordion and up through COVID-19 played 180 gigs out of 360 days a year for 6 years at a German Hofbraühaus. In May 2020 i got a 4 way bypass to add to the issues. My experience with the Doxycycline is typical. First 7-9 days tired, weak; remaining 12-14 days better. Unfortunately, my heart is weaker and I cannot walk more than 100 ft before I am winded. However I can sit and play accordion for 4 hours without much difficulty. I have a cardiologist/Oncologist treating me plus an Oncologist and we believe that the heart is the culprit not the chemo. Expect some Chemo brain fog. I am taking 10mg prednisone daily except when I need a boost and then skip the prednisone and take 1/2 to up to 1 dexamethazone that day. I have no pain; no evidence of cancer in lymph nodes. I am taking Physical Therapy 2-3 days a week to build up my legs; no problems with upper body because of accordion. I am a candidate for L177, but we are holding off on that. The issue is my heart at this point. Bone Mets are stable or shrinking. One more thing! I have visited and received treatment from 6 different cancer centers. Each oncologist has provided some gems of knowledge to me. Wishing you good luck.
Tampa Frank
Thank you Frank. All the best to you!
I had the same problem with Zytiga, enormous joint and muscle pain. I started Docetaxel on November 7th, side effects were mostly nausea and diarrhea, but faded quite fast. Fatigue is my biggest issue with the chemo. But, my PSA has been rising a lot, 306 as of January 10th. Hopefully that will fall next round, we'll see.
I agree with EdBacon. I would try Xtandi before beginning Docetaxel treatments. I'm on the latter now and my body has reacted much the same as others have reported here. I would advise checking out a booklet called "Chemotherapy and You" published by the National Cancer Center. It makes suggestions for ways to deal with each side effect that may push themselves into your daily life.
cancer.gov/publications/pat...
I have completed 6 treatments so far and I'm still playing pickleball, lifting light weights, and walking my dog 4 times a day. My PSA has fallen from 16.5 to 5 so, all in all, I'm glad that I agreed to start chemo. I wish you the best, MJCA, with whatever treatment you choose.
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