Hi Everyone Happy New YearMy husband has received his 3rd Infusion of Doxcetaxal. He has been having terrible side effects
Fatigue he can hardly walk,sleeps so much Constipation, hair loss, Diarreah, Headaches, Dry Mouth Food is so bland he is hardly eating, Bone pain in his legs, Chemo rash, Frustration bordering anger, it's like he is a different person. I worry so much what this drug is doing to him.
These symptons get no better during the three week window between infusions. We have spoken to the Oncologist and they just look sympathetic.
l know everyone is different with this supposed mild chemo drug but l read on this site that so many men are getting through this therapy quite easily, and by day 7 things get better and they are able to function ie l go to work, l go to the gym etc., is anyone out there who can honestly tell me that they have suffered or are suffering like my husband is please. l would just like to know if his symptoms are the norm.
My husband's Cancer diagnosis was 11 years ago,at that time he has done Radiation to the Prostate bed, Zoladex which brought his psa down from 63.0 to 0.02 and he was good for 6 years on a watch and wait method, then due to a sharp upturn on his psa he went back on Zoladex in 2020 and after 3 injections he became Castrate Resistant .
Next therapy he was given Xtandi which seemed to be bring the psa down. however that too stopped working. He has also had an Orchiectomy .
He now has advancement of the cancer with a very high psa involving belly lymph nodes, fortunately there are no bone metasteses.
So Chemotherapy was now the only route said our Onco.
We were not keen on the chemotherapy route but were told this was the next step and it would work, we were concerned because my husband has only one kidney and no spleen ( he lost both in a traffic accident when he was 28 yrs old, he is now 72). We broached the Oncologist about this and he said that it was not detrimental in doing doxcetaxal. l am wondering if all these side effects are due to the fact he has no spleen and one kidney.
Please anyone out there l could use a little help.
Thanks so much
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Knittingque
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I'm sorry to hear the side effects are so rough on him -everyone has different reactions. I hope he is getting a liter of fluids a day or 2 after his chemo. Taste problems ("dysgeusia") are common but temporary - ice chips during the infusion may help avoid that. He should also be getting Neulasta (or similar),an anti-histamine, and a corticosteroid at each infusion.
Thank you for your reply TA. We are doing all the things you mentioned together with ice mitts and ice boots for neuropathy and plenty of ice chips. He does Dexmethasone the day before, day of and day after infusion. He hasn't been given Neulasta but takes a anti histamine over the counter from the Drug Store, l have read that Neulasta can make bone pain worse in some cases and with all else going on, we are reluctant with anything else to burden him further.
One thing we have noticed since he is prescribed Prednisone every day two 5mg pills in the am, after an hour he feels quite dreadful the rest of the day. We told the Onco about this and she couldn't think why that happens ( he had a reaction to prednisone a few years ago) we asked if there was anything other than that to take and she said no this is the protcol? In your opinion do you think there is an alternative to Prednisone?
So Prednisone is stopped temporarily for a couple of days when your husband is taking Dexamethasone? That was my experience. And my understanding. You can't do both . . .
No Prednisone is taken everyday including with the three days of Dexmethasone that is the protocol, No one has ever suggested we stop during the Dexmethasone day before, day of infusion and day after.
So l am not understanding why you are saying you can't do both......
Prednisone and dexamethasone are both corticosteroids and do sort of the same thing, to my understanding.
But dexamethasone is much stronger. During the three days I took it during my Docetaxel infusions I felt fantastic! But apparently if one takes it continuously over a long periods of time eventually you don't feel fantastic anymore and it wrecks your body.
Anyway my understanding of the protocol is that you do not take the two together. That was made very clear to me. So, as instructed, I stopped the Prednisone for 3 days around the infusions
But taking the two steroids together, that's a lot of steroids. Maybe that's what the doctor ordered. And I'm not a doctor of course, I have just met a few of them of them in the PCa-related cancer field (in Canada). I don't know what the side effects of taking the two steroids drugs together might be, regardless of whether it is in fact the standard protocol or not.
UPDATE LATER: I did ask the Perplexity AI service if some of your husband's symptoms could be related to steroids. Of course the answer is that it is hard to distinguish between the symptoms of chemotherapy side effects and too much steroid. But it did seem a worthwhile concerned to get clarified.
(I have another note below on the question of fasting.)
I had a bad time with docetaxel myself. A severe hypersensitivity reaction to the first infusion, crippling vertigo that lasted longer and longer with each infusion (over two weeks after the sixth), it felt like I was being stabbed by knitting needles all over my back and sides ("taxane acute pain syndrome"), everything tasted horrible the entire time, constipation around the time of the infusions from ondansetron followed by very loose stools after that. But rather than sleep the whole time, I barely slept at all. And yes, the frustration turned into anger on many occasions. (Luckily I have a very patient and loving wife who helped me through it all, which it sounds like your husband also has.) The good news is that I fully recovered several weeks after the infusions were completed and my PSA has been undetectable for more than a year. In the first week after infusions three through five I swore I was never going to go back in, but by third week I'd recover just enough to convince myself to "try one more treatment." Very glad I did. If he can stick it out he will likely also fully recover and will also be glad that he did.
One piece of information that may be helpful to you is that my vertigo was eventually diagnosed (a month after the last infusion, of course!) as vestibular migraines, a pain-free type I had never heard of. I had classic migraines (aura, pain, nausea) from high school until about my mid-forties but thought that had gone away since I didn't get the pain anymore. But I had a number of episodes of vertigo that were undiagnosed by my PCP. A neurologist said that it's not uncommon for migraine symptoms to change as we age and very likely the taxane was triggering very strong events. He told me to see him again before I start more chemo and he'll put me on Nurtec, which may control it. It's a long shot, but if your husband has any history of migraines, it might be worth mentioning and maybe they can do something about the headaches.
Please send him my well wishes. I know it is very tough, but eventually there will the light at the end of the tunnel.
Sorry to see this, know that it gets better after the treatment is over. Is he getting decadron the day before and during the infusion? Try using the Kool cap to keep his hair, cold mittens and socks to prevent neuropathy. Hydration is very important as well.
All of these issues resolve ost treatment. Get some exercise daily, rest as you need . If it works, it will be worth the temporary side effects.
What is decadron, we do a drug (steroid) Dexmethasoneday before, day of and day after infusion.
We do all the other things.
Thank you for your information, my huband can barely walk never mind excercise, l am dreading to think what the next 7 infusions will be like for him.
My husband is a strong and very positive man and doesn't complain, before this Chemo he was out on his bicycle everyday doing many miles he was a fit guy, to see him like he is now is frightening.
Knittingque, sorry to hear about your husband’s challenges with docetaxel. Have you discussed with the MO about reducing the dosage?
I too had a rough time. I had my first infusion last month and had most of the side effects your husband experienced. The most debilitating side effect was neuropathy in my feet and hands. I could barely walk for 7-8 days. Just had my second infusion (reduced dosage) and waiting to see if that helps reduce side effects. I used Senna to alleviate constipation and psyllium husk capsules to slow down the diarrhea.
Thankyou sorry you are going through the wringer as well, it would be interesting to hear how the reduced dosage plays out with the side effects, if you can manage to message me if you see a significant change. Good luck and "keep the faith"
I went through Docetaxol and also Jevtana and carboplatin. I am wondering if he is a good candidate for Pluvicto. I am currenlty on it and having no real side effects except dry mouth and fatigue. If he is psma positive this maybe a better route for him. I know it is for me. Ask your DR.
Good morning. I'm so sorry to hear about your husband's difficulty with chemo. My dad was 74 when he had his five rounds of chemo. He had a very difficult time like your husband. I don't recall him suffering from diarrhea but the rest of the symptoms sound pretty similar. It's been nearly 10 years though so my memories could be a little foggy. I remember my dad being so miserable that he was also angry/depressed. I think that was the hardest part for us. As a word of encouragement, my dad did get through his and it was very effective. It's been nearly 10 years and his prostate cancer is still well managed. In fact, he is 83 years old now and still preaching in a small country church. How does your husband's labs look? How are his creatinine levels? That would be a good indication of any damage to his kidneys. I would encourage him to drink as much as he can and to be encouraged that although it is difficult, it is effective! Lynsi
Hello,I sm do sorry to hear of all the suffering your husband is getting and simply cannot imagine what is like to go through all those SEs. I am about to get on the same treatment, a couple of weeks ago I also wrote a post asking precisely about the possible SEs and asked those who had done it or are getting docetaxel to share of their experiences. I must say that most answers I got were heartfelt counts of what they had or are dealing with. But I also got this one reply that put me down so much and was very discouraging, wich is the opposite feeling for all those of us who come here seeking for encouragement and empathy. This answer came non less than from T.A. and said "I am saying that you are "catastophizing." You are going on the" internet and finding lists of possible side effects and imagining you will get them. In contrast to your imagination, docetaxel is among the mildest of chemotherapies."
(typo and all) What can I say after reading this? Not much. I am going forward and will start the infusions in a couple weeks, after MO determines what's the dosis I am getting.
The uncertainty and fear not knowing how my body will react is mind-blowing. I only need to add that your husband is lucky to have you by him. My circumstances are different, I will be fighting this fight alone.
I can only wish for your husband to fully recover.
Good luck to you. You are relatively young so hopefully strong enough to handle what comes your way. My husband only prescribed doublet, perhaps because he is quite a bit older. Also read up on infrared heat. It may be soothing for side effects.
I didn't respond to your earlier post because I know my experiences were definitely not the norm. The hypersensitivity reaction and vertigo were what made it so difficult for me and they are extremely uncommon. (The vertigo was approaching unique, the oncologist and PCP had no idea whatsoever was going on). The rest of the side effects were uncomfortable but tolerable. You're likely to have a much easier time than either me or OP's husband.
Thank you it will be hard to go it alone, l wish you all the very best, hey you maybe one of the lucky one's who have minimal side effects praying you are.
Brother in law (72) just finished his chemo set at Rochester MAYO. It was rough on him too—anemic, winded, weak, joint pain, gastrointestinal issues, liver readings not good, etc. They cut his dosage the last two treatments. But he got through it. They also didn’t see family over holidays due to compromised immune system from treatments. Doc says it put him in remission. Hope so!
Thank you l am glad your brother in law got through it. Yes our holiday time was without family due to my husband being immuno comprimised. It was hard not seeing our only Grandchild 2 years old, we managed a Facetime which was priceless. l am going to discuss reducing the dosage on our appt Jan 16th with Oncologist and make sure to get the lab results. He should be getting kidney function bloodwork as he only has one kidney, l will definitely demand this.
Oh John your are the best, my husband often says John brings a ray of light and a positive approach on this Site, my husband is usually the same as you always upbeat and positive, l will get him back there you mark my words.Thanks John and we will all " keep the faith".
Hi - my husband had a horrific experience with Taxotere. He was only able to complete 3 and I told him no more. He was hospitalized after the fist with neutropenic fever. I also fired his oncologist and we moved to Mayo. Night and day treatment. He had such bad side effects that he was on deaths door when we got to Minnesota. They did a full blood work up testing for blood cancer and cardiac work up. It turned out to be inability to eat and chemo side effects that were affecting his heart.
My advice is to question everything and push the oncologist if something doesn’t feel right. I asked for reduction in dose and UF refused to give it to him along with additional IV hydration. The mouth sores can cause a lot of issues. Make sure he is using baking soda mouth wash and getting plenty of protein, 2 ensure a day. I got to the point where he was eating toddler foods because he couldn’t taste salt and he thought what he was eating was going to cause him to vomit.
Claritin can help with bone pain. My husband also ended up with permanent neuropathy, so make sure your oncologist is watching this. Feel free to reach out if you need support. It was the worst 3 months and he is still trying to recover from it. His last cycle was in May 2024. He is 62, 61 when he started. Went from being fit to being unable to walk across the room. Don’t let anyone tell you this is easy. For some it’s very difficult.
Thank you for your response, l really appreciate you taking the time to reply to me, like so many others.
l am so sorry your husband suffered and he has long lasting difficulties. I do hope things will improve for him.
You are a very strong and caring loving wife and we both know where we are coming from when we say it was/is the worst time ever, watching what is happening to our husbands.
It seems there are similaraties in our husband's reaction to Chemo, l found him tonight absolutely soaking wet and freezing cold, l was so scared but managed to get him settled again. I truly think that his body will not be able to tolerate any more infusions.
We have to get through this now until we speak with the Oncologist mid January but decisions have to be made in our favour, l will definitely be standing my ground.
My husband is a very positive, happy and loved life even living with Cancer and all the other therapies he has been on which came with there own side effects and before this therapy he was very fit. Its like being with a different person it's heart breaking watching him suffer so much.
We are in Canada, would you mind if l messaged you personally to ask you a few questions.
With Docetaxel you should chew ice chips, wear ice mitts and ice socks during infusion. I would make sure you get Grastofil injections starting a couple days after the infusion. These usually are for 5 to 8 days. This will help protect you from crashing.
I had 6 rounds of Docetaxel back in 2017/2018 and didn't get the Grastofil until I crashed and was hospitalized. I just completed 7 rounds of Docetaxel and 10 rounds of Cabazitaxel. Docetaxel has more side effects, but both will give you neuropathy. I have suffered from muscle wasting. Chemotherapy is brutal on the whole body and you just don't know what damage its doing. I wanted to get Lu-177 instead of chemo but its wasn't available in Canada yet as SOC.
Thank you for your reply.We did do the icing procedures and lots of ice chips but k had not heardmof Grastofil injections, l will definitely look into that. I live in Canada and l believe there have been some clinical trual held for Lu-177 but as yet l am not sure if it is available, l will lòok into that also. Thank you and l wish you all the best.
Vitamin B6, 100 mg for helping repair the neuropathy.
I have read going to 1/2 dose every 2 weeks (vs full dose every 3 weeks) can reduce the side effects.
Definitely should get 1 liter of IV fluids on treatment day and 1-2 liters for the next 2-3 days. That will help him feel better and the constipation.
One needs 60 grams of protein daily to offset what your body needs (it eats up your muscles if you don't supply it daily). Premier drink has a 30 gram carton.
60 -100 grams is the daily goal.
Use a blender and get him calories with a milk shake. Add 1-2 eggs, use ice cream, and other supplements.
My wife used chocolate ice cream as that was still tasteable.
Cottage cheese is easy on a sore tongue and good calories.
My ultimate goal was to get at least 500 calories in every time I opened my mouth for sustenance.
When you have no or low taste you lose the will to eat after a very few bites, particularly since everything tastes like card board.
Have you MO or PCP get him on a sleep med.
No sleep or poor sleep makes a bear out of anyone. I know I was a bear and felt bad about not being able to control that better.
Please stand by your man. The going is really rough for some of us.
K: Maybe fasting around the infusions might be something to consider? Forgive me if my suggestion is something you've already tried and is unwelcome.
I fasted about 48 hours around my infusions. I fast from time to time and it wasn't too difficult. Of course you drink water coffee or tea or whatever. If one isn't used to fasting and also is used to a high carb diet I think it would be much more difficult.
And my result of course was the whole thing went pretty well. But as they say results may vary. It's worth noting that apparently all things being equal that fasting is generally not harmful for persons in the circumstances that your husband and I find ourselves.
The theory is that fasting is a stress and that non cancerous cells kind of go into a little bit of starvation mode. And this can be protective from the chemo. However apparently cancer cells, characterized by a different metabolism, don't have this ability. They are comparatively more vulnerable to the chemo.
Okay, lots of people make claims on this forum. Are there any decent articles on the topic?
This article is a narrative of the question from a couple of years ago, from a top tier medical journal:
Effect of fasting on cancer: A narrative review of scientific evidence
And here's the conclusion from a query today to the AI service "Perplexity", concerning any evidence for fasting during chemotherapy for cancer:
"In conclusion, while some evidence suggests potential benefits of fasting around chemotherapy infusions for reducing side effects, the evidence for significantly better chemotherapy results is limited. More high-quality research is needed to definitively establish the effects of fasting on chemotherapy outcomes and side effects, particularly for specific cancers like metastatic prostate cancer and specific drugs like Docetaxel."
Please accept my wishes that your husband's experience with chemo should improve! And that he is able to continue if possible and that all his therapies are successful! And strength for you as his champion!
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