My honey is starting chemo this week. He was diagnosed with aggressive prostate cancer (Gleason 9) in January of this year. At the time it was extensive in his prostate and also in his bladder. His PSA at the time was a 4.3 and was diagnosed as a result of multiple urinary bleeding episodes. He was started on Eligard shots in February. They planned to start radiation in June after a second round of Eligard was going, but scans then showed mets in hip bone and lymph glands in groin. They said no to radiation and instead started him on Zytiga in June. The combo kept his PSA to <1 where it remained until late last month when it went up to a 6.3. New bone and CT scans two weeks ago showed many mets to his liver (which they say is their biggest concern) as well as bowel, and more lymph glands and in pelvis bone. His PSA had also risen in a month to 10.5. They had him stop the Zytiga and said that he needed to start chemo as soon as possible, so that will be next Thursday. He will be doing Docutaxel by intravenous once every three weeks. His oncologist has warned us about the drop he will experience in his white blood cell count and increased susceptibility to infection, so we are aware of that aspect. My questions are this... First, can you help me as a caregiver by telling me what to expect as he begins this chemo process? I have read the lists of possible effects, but wonder how quickly he would experience these once started - that day? in a few days? less for first session but more effects during subsequent ones? Second, how quickly does the drop white blood cell occur and then is there anything to do to build it back up? Third, do you have any advice/suggestions for things you have done to help him feel more comfortable when the side effects are a struggle for him? Is there anything I can do in the weeks between treatments to help his body prepare for the next rounds - specific diet/beverages, level of exercise? He is a golfer and used to playing 1-2 times per week and he is hoping to continue to play. I have so appreciated having this forum to read all of your helpful advice and support for each other, and now appreciate having you to turn to with my own questions.
Starting Docutaxel chemo treatments t... - Advanced Prostate...
Starting Docutaxel chemo treatments this week
I also have a Gleason 9 with lymph node and one bone met. I finished six rounds of Docetaxel at the end of October. Below is a link to a post where I wrote about what helped me with chemo.
Monday was my infusion day (every three weeks). I felt fine usually until Tuesday afternoon when the tiredness and achiness would set in Usually it lasted until Friday or Saturday then I felt OK.
As far as the drop in white blood cell counts, typically they reach their lowest point about 7-10 days post infusion
Encourage him to stay hydrated and stay active Both of those things really helped me get through chemo with relatively few side effects
I’m happy to answer any other questions you have
healthunlocked.com/advanced...
Thank you so much for the information, it is so helpful for me to know what we might expect and how I can help him. I appreciate your help!
If possible, try to get a biopsy of one or two of those liver metastases. It might provide clues for clinical trials. Histology, IHC and genomics.
Thank you, we will bring that up at our next meeting with his MO
Please see my response about IHC on this thread:
healthunlocked.com/advanced...
I will read it. Can you tell me please what IHC is? thank you
ImmunoHistoChemistry. It stains for various proteins in cancer cells.
I'm on cycle 3 of 6.....Water.....
Water.....
Water.....
Walk, move,
Do rough diary from first infusion.
Seems like each infusion has similar side effects for me.
Each time side effects get slightly stronger.
Up till this point it's been managable.
Cycle 3 of 6
I can start to feel im virtually half way through....
Hang in there.
Be patient.
Look and feel for the possitives...
I think I can wee slightly better?
I feel chemo is helping my pelvice mets....
Think it's clearing up a toe nail infection.....
Keep positive, it will be ok.....
Thank you for the suggestions, ways you feel it helping you and the support, I appreciate it
My husband received 6 cycles of docetaxel in 2021 with minimal side effects, primarily hair loss. He worked full time, golfed at every opportunity, and felt great.
We were cautious about infections, primarily because we did not want to delay any treatments. He worked remotely as much as possible, used an air purifier in his office, wore a mask and used hand sanitizer. With all the many respiratory viruses circulating right now, caution makes sense. We primarily socialized outdoors.
He iced hands, feet, and mouth, starting 15 minutes prior to infusion and continuing for 15 minutes post infusion.
He went back to the office after his infusions.
His were on Wednesdays, and I purposely did not make plans that weekend. Invariably, by Friday night he was pushing for plans for the weekend and setting up golf dates. He really had no downtime.
Everyone is affected differently, but it is possible to sail through treatment.
Best of luck!
Thank you for the reply, another poster recommended icing hands and feet as well and I will be sure we do that. I'm glad to hear that your husband tolerated it well and was able to continue playing golf, that will be encouraging to my honey!
When you say he iced hands and feet 15 minutes before infusion, could you explain the process of how you did that? Did you bring ice to the infusion? Or does the medical center do all that? Thanks, have heard of this but never understood the process.
Great question! The infusion center did not provide anything. I bought gel mitts and socks from Amazon, and extra gel packs so we could replace them midway.
You freeze the mittens/gloves ahead of time and bring them in a cooler? I'm not due for chemo yet, but it may be up next, so I need to get these details down before I have to make quick decisions. Thanks for your help!
Exactly! We have a soft sided cooler bag my husband used.
I just finished chemo for breast cancer; docetaxel plus Cytoxan. I brought a full cooler because I cold capped, so I brought migraine caps for ride home to keep the cooling going, and little frozen gel eye covers to try to keep lashes and brows, plus all the hand and feet stuff. I looked like I was moving in. And, the chairs weren’t heated so I brought blankets. 😊 The infusion center did not allow electric throws.
My 81 yr old brother just completed chemo with docetaxel as well. No neuropathy, no mouth sores, a little fatigue, no nausea. He iced, too. The first cycle he was not as diligent with ice chips and he had alterations in taste. After that, he was more careful and no problems.
curious about age and presence of any severe comorbidity, if any and prior history of infections. they might consider adding GCSF if the patient is especially prone to severe neutropenia .
Thank you for the message.....He will be 80 in four weeks and has no other comorbidity or history of infections. He has had low haemoglobin due to heavy urinary bleeding issues but that has been resolved since having a PAE procedure in the beginning of June. HIs haemoglobin is now back to normal range.
Hello thats good to hear. please take a look at serious adverse events section for docetaxel in this clinical trial
clinicaltrials.gov/ct2/show...
It should have a list of adverse events and percentages. 30% of ppl experienced Serious adverse event, you can look at the breakdown for details.
Thank you I will take a look at the clinical trial info about the severe effects.
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. Help him stay fed, hydrated, rested. He can get through it.
I got very good results from chemo. I hope he does too.
Thank you very much for the response. He was anticipating the fatigue, neuropathy, nausea and maybe hair loss, but of course does not know to what extent and when/how long these symptoms last. We both wondered about any other prevalent side effects to prepare for. I have read him all of the replies with the suggestions and encouragement and we both are most grateful! I am glad you got good results, we hope he does as well!
It took about six weeks after my last infusion before I felt normal again.
No one mentioned possible mood changes due to the steroids. Yes, neuropathy, taste changes, fatigue along with some hair loss were present, but the mood changes were the most difficult thing for me as a caretaker. He felt like a sleepless Superman on the steroids and took risks he had been advised against: ladders, chain saws, lifting heavy objects ( he has extensive bone Mets in spine). I tried to be the voice of reason - creating lots of frustration for both of us. Grumbly and moody, he told me I was grumpy 
. I was not prepared for the emotional side of chemo/steroids. Sleep deprivation after chemo didn’t help.
Thank you for the additional information about possible mood changes. He has been on a single dose of steroids each day with the Zytiga, with no negative side effects. However, they are increasing it to twice a day this week, so I will be mindful of this as a possibility. Sleep issues have been an ongoing issue for both of us due to urinary problems, waking 5-6+ times a night does not allow for good rest. I hope that sleep will be not be further disrupted. Thank you so much for writing!
The icing of hands was the easy part for us. I did buy ice socks also but trying to get them on the feet was a problem. We resorted to filling food storage bags with ice and placing them on top of his feet for the trip home. The infusion centers that we went to would have warm blankets available and made ever effort to make him comfortable. The first night he would have trouble sleeping due to the steroids given. Day 3 would begin his week long period of nausea and trouble eating. Fruit and jello would be all he could tolerate. Some neuropathy issues. Our MO prescribed Gabapentin to help. Week 2 he'd start to climb out of it with week 3 being a good week for him. He was able to work during his treatments although he had a few rough days. Best of luck to you both! Hoping he tolerates the treatments well. Many do.
Thank you for the helpful info on icing hands and feet. This has been mentioned and I have this morning ordered socks/mittens with the ice packs that someone recommended. We live an hour from the cancer center so I was concerned about keeping things cold/frozen for the trip there so they would be useful. I will do as you suggested and fill a large food storage bag with ice for our soft-side cooler and also take some smaller bags to put ice in directly in case we need to use it for ice packs if the others lose their chill. I am very grateful for your message and the information!
We were 2 1/2 hours away from our infusion center and didn't have a problem keeping everything frozen. I ordered 2 sets of gloves from Amazon and ended up changing them half way through. We used a soft side small ice chest and filled food storage bags with ice. Ours kept everything frozen. This will sound pretty stupid...but I bring a small throw blanket for me. I've had nurses offer to bring me a warm blanket but there's something a little comforting about having your own blanket. We're now onto Pluvicto so I'm not able to be with him. I sit in the waiting room with my blanket & book. I always wash it separately after dragging it through the hospital. Even in the summer hospitals seem cold.
Thank you for the suggestion to take our own blanket; he is always cold so this is definitely something I will do. I assumed that I would be able to sit with him during the infusion, but I guess there may be a chance I won't and will have to wait in a family area. Thank you for the advice, I appreciate it.
I'm so sorry for the confusion. There was a period during covid restrictions where I couldn't go in but that was lifted and I was able to go in with him. I'm no longer able to in with him with his new treatment Pluvicto. Pluvicto is a different product than chemo that has more restrictions.
They are still allowing one companion with each patient in the chemo infusion area at our hospital. I'm hoping it will be the same for you. The nurses we've met there have been some of the most caring people I've met.
Thank you for clarifying, I am hoping I will be able to sit with him. We are prepared for some challenging days, but are hoping for a positive outcome from the treatments
We used slip on ice slippers (Amazon) and they stayed cold the entire time. We live about 45 minutes away. Denny also used an ice cap and ice mittens. He never lost all of his hair- it thinned a bit and developed a cute little kinky curl. The ice mittens never stayed cold throughout the infusion and he finally decided against them after a couple of times.
Thank you for the information about the slippers, mittens and also a cap. I will be sure to have these for him. I appreciate you taking time to write!
Another case allowed to run amok by doctors’ reliance on only PSA to track progress.
Your husband’s case sounds very similar to mine, and has me fearing/wondering how much mine has spread in the last 4 months with nothing but Eligard trying to hold back a low-PSA generating cancer. My urinary symptoms and bone pain have certainly increased despite Eligard and PSA of 2.
Best wishes to him and you. Fingers crossed for an easy ride through the chemo.
Thank you. He had bone scan and CT scans in February, an MRI in June, then bone scan and CT again in October. The initial plan was Eligard and radiation. The MRI in June indicated the cancer had spread to pelvic bone and lymph gland in groin and the decided they would not move ahead with radiation since it was then in four places. Zytiga was added then overlapping with Eligard. We were both very surprised initially at the diagnosis being a Gleason 9 level cancer with only a PSA of 4. I think many of us think that prostate cancer will always be initially identified with a high PSA number, we did. He had his PSA checked every year and it was never an indicator of a problem but clearly with the extent of the cancer found it has been in his system for a while. But for the urinary bleeding episode he would have not been diagnosed. I hope that you have a result from your positive treatment.
Sorry, need to edit......But for the urinary bleeding episode he would have not been diagnosed. I hope that you have a positive result from your treatment.
yea unfortunately not all PC shows itself in PSA . See the link TallAllen responded to you earlier in this thread.
healthunlocked.com/advanced...
Hope he gets some remission from chemo.
Gabapentin helped my husband the most after his third treatment he was going crazy with body aches restless legs and could not get comfortable. We tried everything Claritin , rubbed his legs with CBD and magnesium oil. Gave him CBD gummies nothing helped. Anyway he had gabapentin left from back surgery where cancer had metastasized and fractured spine and it helped! We were so happy because on weekend and only had Xanax and didn't want to take that.
Thank you for the information, I will keep all of this in mind should he experience the body aches and leg issues you describe. Did he continue to have these side effects during subsequent treatments? I appreciate you taking time to write to me.
Funny I just started gabapentin for nerve pain from disc hernia in my neck. No other drug gave me any relief other than gabapentin. Seems like somewhat of a wonder drug.
You asked about the white blood count. My infusions were on a Thursday, after the first one I got, by the following Wednesday I was running a fever because of low white blood count. I needed to go tot he ER. my count went down to almost zero. After that they gave me Neulasta to keep my white blood count up. They put a timed injector on my arm and it would inject about 27 hours after chemo. I would ask them about Neulasta or something similar. I have it on my profile if you want to read more detail about it. thanks
Thank you very much for responding. My greatest concern for him is actually the issue with the low white blood cell count. I appreciate you telling me about the fever, I will watch for that and also read about the Neulasta and keep it in mind to ask about. I appreciate your help!
my husband also go the neulasta single use on-body injector . It can go on arm or stomach. When they put it on it snaps like a rubber band and a little needle goes into the skin and device starts blinking green 27 hrs later you hear it click and it dispenses the medication and turns solid green and your set. Other wise you would need to return to your doctor and have them give you an injection . The gabapentin I was speaking about Doctors also use that for neuropathy and restless leg syndrome which chemo can cause if ice packs don’t work.
Also good luck with all his treatments and I hope they all go smooth and you don’t need all he extras!
Thank you for the explanation about self-injector and all of your kind words of encouragement! I am very grateful for the help as we start on this.
Hormone injections vs chemo
PSMA scan results 
Zytiga starting to fail, PSA rising rapidly - next steps?
Pain and blood in urine after long walks
Adding Zytiga Post-Chemo - necessary?
