I have gone thru Zytiga and now Xtandi all while on Lupron and Exgeva. I was a gleason 8 with an initial PSA of 35. Prostate was removed in 2013 at 55yo. My previous scans showed I have 6 bone mets all centered in the pelvic and lower spine and no soft tissue involvement. Received two rounds of radiation for specific pain that developed in my right hip area. Latest scans, due to continued hip pain, showed lymph node involvement in chest and nodules have developed at prostrate bed and around base of bladder as well as new bone mets and increased activity of existing mets. All this developed since last set of scans in November '16. So Xtandi wasn't doing any good despite my psa oscillating between 20-27.
As a result I start chemo in 2 days at doc's prescription. I've been dealing with this new treatment level good so far, or maybe I've just been able to deny its actually happening. So this morning after having read someone's experience with depression and severe fatigue from chemo its all come crashing down. I have to be honest I am really scared of chemo and all of its side effects. I mean I knew this was coming, I just thought I'd have more time. While I have not experienced any side effects from current meds I am really concerned that chemo will seriously derail my ability to continuing working.
My MO talked about good 2 days after then days 3-4 being more prone for side effects. I've set my schedule so that my down days can be on weekends. Besides prednisone and anti nausea med is there anything else I should be taking or requesting from my doc? I know exercise is important as well. I take some supplements, reduced my carb intake to almost 0, same with sugar, keep peeing no the little blue strips to get my ph more alkaline but now it feels like whats the point, just eat what I want cuz nothing seems to have altered the course of the cancer that lives inside of me.
Anyway I'm starting to ramble just feeling scared and overwhelmed and looking for advice and insight.
thanks Charlie
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Charlie, My feeling is that you will find it not nearly as bad as you thought. I am on 4 mg dexamethasone 2 at a time twice a day before day off and day after in addition to prednisone daily. I use gel ice to lay my feet on to prevent neuropathy, same with fingernails and toes, I walk in with a rolling small cooler, I also suck on my own ice cubes to prevent taste bud problems. How many cycles are they going to do? You can read back on my experience through 10 cycles, with other comments, I wish you the best, it will be fine
Once every three weeks for up to 10 cycles. I also heard about sucking on ice to minimize mouth sores. Thanks for getting back to me. I'll read thru your history
I was scared to death, too. It was not nearly as bad as I thought. You just need to get mentally prepared for what feels like getting a case of a mild flu. And each treatment is one step closer to it being completed.
While everyone responds differently, if you are generally in good condition there is no reason to think you won't fare very well. And it works! My PSA went to undetectable.
I was able to keep working and still have been for the last 2-years since it was finished.
Follow Dan's advice and drink lots of water. You will be fine!
Unless Car(T) pans out most of us will probably be in your shoes. Of course not everyone excepts this fate. Dr. Nalakrats believes raw Gator liver can beat PCa. Nal was last seen in Florida chasing a Gator named Zabu. Witnesses at the scene said Nal spotted Zabu after a 7 hour search and screamed "Only Zabu Can Save Me Now", and jumped into the water wrestling Zabu with the goal of eating Zabu's liver...looks like Zabu won this one....myself, I think I would rather get the chemo.
What chemo(s) are you taking? I just finished 6 cycles of Docetaxel and I am continuing to recover, but overall I feel almost back to normal. I still get out of breath fairly easily and can't do a lot physically yet, but it's really not bad.
Everyone of us who has gone through it was scared at first, mainly because you don't know what to expect. You can be own worst enemy here so work at not worrying. It was so much easier than I thought. And I'm sure others here would agree.
If you are typical you will feel crappy for most of the first week after infusion. It's like you are coming down with the flu, but better than actually having the flu. Any flu that I've ever had was worse by far. That crappy first week is followed by rapid improvement over the second week and almost completely back to normal the third week. The nausea and stomach issues are mainly in the first 5 days followed by low energy in the second week. Make sure you have some nausea meds although I never used mine once. Get as much exercise as you can, plenty of rest, eat healthy and drink lots of water.
And remember above all, Most people tolerate the side effects well. Don't pay attention to any horror stories you might read. You will just worry for nothing.
There are a lot of us "chemo veterans" here so feel free to keep us updated with progress/problems or anytime you need our support.
Good luck and keep us posted.
Where are you located? Do you have a support group? Would highly recommend that, it helps a lot.
I'm in Rochester, NY and have gone to a Gilda's Club support group which I've found very helpful. Thanks for sharing your experience and I'll keep you posted!
There is no sense getting scared for any type of standard cancer treatment. You can face them with courage and confidence if you learn the common side effects of such treatments and learn how to mitigate them. Unlike in the past Chemo Therapy is now recommended to be used even at an early stage in treating advanced prostate cancer. If you just follow what Dan59 has said in his reply, you can progress smoothly despite the rigours.
I can only repeat my own chemo x10 cycles, Gleason 9, all 12 cores cancer, around 49 bone mets . Dxd @ stage 4 no prior symptoms. At end of chemo 1 met, no soft tissue growth, PSA 0.03 (still is 1 yr later)., down from 200. Many of us worried about chemo had no problems.....good luck. David
Charlie, I was scared also because I was going in to the unknown. I finished my 6th and final cycle last month. I feel great. I had a very pleasant experience in the infusion room. The nurses at MD,Anderson in Camden, NJ really took great care of me. I was spoiled for each visit. I had the chemo on a,Thursday and it took 48 hours for the side effects to commence. By Saturday I felt fatigue, light nausea and sleepy. By Tuesday, I started feeling better. It didn't prevent me from working. I felt coherent and functional the whole time. I rode my bike for 3 miles a day,did my walks and light stretches to combat the fatigue and it worked. For the nausea, I was prescribed compazine but I didn't take any. I drank 2 cups of ginger tea on Saturdays and it went away. Everyone reacts to meds differently. I would start eating healthy and exercise regularly now. Since im a devout Catholic, i prayed a lot and attended mass regularly. Hey, you gotta have faith in religion or any religion, rigjt? Just do about your business daily and comply with your doctor. I believe you will be fine. My PSA was 415 with a Gleason score of 8 since diagnosed on March of this year. My PSA is now 0.1. I wish you the best. Keep us posted. God bless.
My husband and I were scared too when he started Chemo. He is now more than half way through the third cycle and, while we are not as scared as we were in the beginning, we are still a little scared from time to time. Every person reacts to Chemo differently and each cylce seems to be different as well. In general, I can agree with others who have said that the first week is quite bad whereas then the second wee is better, although I must say that my husband, who has also had hormone treatment and Zytiga before, is not feeling well at all at the moment. But we stay positive, and so should you, because, even if the Chemo is bad, it will hopefully help you to get much more out of this wonderful life.
Speaking of laughter -- my husband and I had a routine for chemo. We would bring Far Side cartoon books to read together. Gary Larson's Far Side are one-panel side splitters in many cases. My husband would also always dress nicely when he went to chemo, a look-good, feel-good approach.
He did chemo very early with Stage IV -- CHAARTED. So he was in overall great health, ya know with the PCa exception. That helps a lot. And he figured out his low days and would take off work about 1-2 days each cycle. Mostly he was tired. With Taxotere only, he also didn't need any of the nausea meds. He had some trouble sleeping with the steroids and some bowel issues across the spectrum (diarrhea to constipation). Just work with the doctor to keep yourself comfortable, and give yourself time to heal.
I would say, just in case, have some cookies that you like, and get some movies to watch. Maybe hot chocolate. Soft pillows. I could recommend movies, but I think that varies so much between people, that I could be off base for you. Usually, the first one is pretty easy, but it doesn't hurt to practice.
Hey. I, too, was scared to open the chemo door. Have now had 3 cycles and have managed it pretty well. The couple of good days followed by 3 or 4 down days sounds about right. I'd be interested in how you feel now, assuming you've had your first cycle.
I have bone mets in base of spine and left hip. Dealing with the pain issues right now. I did have one spot radiation treatment to my left hip which helped for awhile. Had a good run with Zytiga for about 5 months and then my PSA started to climb quickly....so now chemo.
Good luck and I hope you have tolerated your chemo well.
Trout, I had both Zytiga and Xtandi before chemo. I did 2 cycles of radiation to attack hip & leg pain. First lasted about 6 months second only 2 months before pain returned. Doc ordered new scans and discovered spread to lymphs in chest and more bone mets as well.
My first cycle has gone well. My third day out I felt like I was coming down with the flu. I think it was mostly bone aches from the nuelasta shot I received to increase white blood cell production. I also experienced some leg cramping at night?? Not sure if its related or I'm just older than I feet at 59. Massaged my legs and took a muscle relaxant and fell back to sleep.
When is your next infusion? Are you receiving Taxotere/Docetaxel once every 3 weeks
Glad it's going well so far. I would recommend taking walks every day if you are able. It really helps to get some exercise. I spent a lot of time sitting in the first week, but did manage to get a walk in almost every day. Good luck with you chemo.
Lots of us have had various aches and pains during chemo so I wouldn't worry about them if they are minor.
Thanks Gregg! I have found that the predictions of side effects have me micro watching my body and sometimes I believe that normal aches and pains become in my mind "the side effects". So thanks for your input,
Hi Charlie. Apologies for the late reply. I, too, had Zytiga before chemo but not Xtandi. The Zytiga worked pretty well for about 5 months and then my PSA rose rapidly. I've had one cycle of radiation to my left hip which held for a couple of months but the pain is now back. In the past week I have had x-rays and a CT scan (yesterday). I see my oncologist on Wednesday and will have new blood work by then also.
I'm glad to hear that your first chemo cycle went well. I seem to get leg cramping in the morning. Did the muscle relaxant help? It's pretty uncomfortable. I find that I have a couple of good days after the chemo and then 3 or 4 days of feeling rough.
My next infusion (#4) is this coming Friday. I'm doing the Docetaxel every three weeks also.
Please keep me posted with how you are doing. My hip pain has been going on for about 2 weeks now. The X-rays show a lot of activity in the joint. The CT scan should show more detail.
Charlie, Glad to heare the first one went well! I did want to mention that for at least the next 2 it is important that someone watch you closely during the first 20 minutes of chemo infusion to watch for flushness in face and anything that would indicate an allergic reaction. I had this and they stopped the drip on I think my second cycle, gave me beydryl and have not had it since through 10 cycles.
Hi my name is Roy. I have been fighting this cancer for 12 years now. The last 5 going on 6 years I have been in stage 4. My Gleason score was 7.
Well I was put on chemo (taxotere). My first round was terrible. I was scared and did not want to continue. I was as sick as you can get and experienced every side effect and more. It put me down hard for about 2 weeks but I got better. Then came round 2. This time it was a breeze. Slight fever and diareha were about the worst. I had a dry nose and a few nose bleeds but food this time tasted ok not great but ok.
My doctor said treatments would get easier and so far he was right. My PSA stopped climbing and everything looks promising. Still do hormone therapy also. One treatment every 3 weeks until February 2018. I'm looking forward then.
You will get threw this just fine. I will be going threw it along side of you. We will be fine. Many have gone through this and I have heard many good reports about it.
thank for your experience! My first round has had me feeling like I'm coming down with the flu on day 3 and day 6 so far. Some bone aches and general tiredness. Am able to work thru them with some Tylenol and sleep. I have noticed that foods taste different and I need to drink lots of water. I too am once every 3 weeks. Thanks for sharing
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1st Time posting. Need suggestions please. 
Next Step Docetaxel after Abiraterone & Xtandi failed. 
Lu177 expeiences in Germany
Next Step - Rising PSA
