Things Very Difficult One Week In Third Cycle Of Docetaxol

Hi everyone.

My husband had his third Docetaxol infusion last Monday.

While he had been quite well in the week prior to the third infusion and in the first two days after the third infusion, huge fatigue set in on Wednesday. He could hardly keep his eyes open. To me he seemed very withdrawn as well; when we would talk, for example, he would sometimes appear to listen but then ask me two minutes later if I could repeat what I had said.

Yesterday he woke up even more fatigued. We went shopping in the car and it was really an ordeal for him. He went straight to bed when we got home and stayed there for the day and got only up in the evening to watch tv for a bit.

He had very little to eat all day: a glass of milk at lunchtime with a sandwich, later some of the lunch I had cooked, and in the evening another glass of milk and a small sandwich. Not enough at all from my point of view.

He was also very depressed. Like he said that he wanted to look after himself and that he knew best what he needed. This was after I had said to him that with this severe treatment it is necessary to eat and drink whether he feels like it or not. He doesn't like me saying these things. Then when I tried to hug him he withdrew and began to cry.He told me that his symptoms were back - the ones he had before the treatment with Docetaxol started - and he was asking himself if he could go in somewhere (like a hospital) where they can take good care of him. That last part of the sentence is to me clearly depression talking. Anyway,

he feels a slight discomfort in his liver, he feels nausea and has absolutely no apetite. None of the things that were recommended on this forum to us to increase apetite have worked.

So I suppose my question at this point is: Have any of you experienced that their symptoms came back or worsened while they were on Docetaxol? Is that something to worry about or can it happen during the treatment? And should we consult our doctor or should we wait until, in three weeks time, we have the scan anyway?

Best wishes

Mel.

50 Replies

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  • Mel,

    I'm not at that point in my treatment and can't address the symptoms, but I see no problem with reaching out to the doc now for a conversation rather than waiting three weeks.

    Hang in there--especially when he says things that could be interpreted as hurtful. It's the illness talking, not him.

    Yost.

  • Hi Yost.

    Thank you. Yes, we will hang in there. And yes we are calling the doctor today.

    Mel.

  • Mel, Your husbands reactions, and side effects describe me at the same time frame after chemo to a tee. First few days we are still on steroids and feel good, though a bit constipated, the more we eat the more we feel that, as such I keep my meals more frequent ,but to a minimum, until things start moving. Friday, which was day 3 after I went to bed early and stayed in bed, not doing much Saturday either, though we did go out shopping for appliances and I got grumpy with the idea of doing any extra shopping. It is a tough road to hoe, these after effects of chemo , I tell you. Usually after the first week it get progressively better until we get another infusion,than back to it. I have found one thing that helped me was instead of doing laxatives, to get rid of constipation, and then be sick with diarrhea for 3 or 4 days, I tried Metamucil, and it seemed to work and not create that horrible diarrhea.

    I wish you the best, feel free to ask any question

    Dan

  • Dan, I often hear people saying that they are only on a steroid for a few days after infusion. When it wears off, things get worse. Which steroid is that?

    I was told to take 10mg per day of Prednisone starting the day of infusion and take it daily for the entire time you are on chemo. That makes a huge difference. I tried it without and it was terrible. That was the protocol they used in the STAMPEDE trial. The side effects of 10mg of Prednisone are negligible. I don't understand why people are only taking a steroid for a few days.

    Maybe I'm missing something.

  • Gregg, I am taking 4mg dexamethasone twice day before, day of, along with drip dex, and 4mg twice day after.In defense my WBC and RB have always been great day before. I have been on steroids for years, currently doing 5 mg daily prednisone, except on dex days,for over 5 years , and on Hydrocortisone with Ketoconazole for years before that. I agree with the Stampede trial. I will say with the dex day of and day after I was putting miles on the bike and doing laps in the pool haha.

    Dan

  • Thanks for the response. I did some reading and found that Dexamethasone is recommended for a few days at the beginning of the chemo cycle. I guess it's in addition to Prednisone. My doctor never recommended Dexamethasone for me so I never took it.

    Here's a good article titled about Corticosteroids used in prostate cancer treatment.

    sciencedirect.com/science/a...

  • dexamethasone, that's it!

  • Paul is on 10 mg of Prednisolone all the time. But prior to infusion he is given a large dose of this steroid I can't remember the name right now, but when that wears off you can feel the difference.

  • Ive only had one infusion so far but I am also on the steroid Prednisolone 5mg daily for the entire treatment.

    Hope hes feeling better soon.

  • Hi Dan.

    At least we don't have that problem with constipation or the other extreme.

    At the moment, as I think I said in my original post, what worries us is that Paul has the same symptoms again that he used to have prior to treatment. Okay, difficulty eating, nausea and fatigue are normal. But why is the liver hurting again?

    Mel.

  • I'm wondering whether these symptoms are more from the cancer than from the chemo. I don't want to tell you what to do, but do you have any confidence that his treatment is working? If not, I would want to change course if it was me. Is there any way you could get another opinion from a different doctor?

  • Greg.

    I am wondering the same thing. Not so much because of the fatigue and the nausea, but because of the discomfort in the liver-region which is ongoing.

    I would love to get the opinion of another doctor. Paul is not too keen on it, though. He feels that he is in good hands with the doctor we are with. Personally, I am not too sure. I find him very cool and very little involved and as if he is only thinking of doing standard treatments. For example, when I asked him if we could add Carbo Platin to the treatment, he said: "I don't work with Carbo Platin." What sort of an answer is that?

    Well, I think I will ask Paul again... Maybe we could see another doctor. Or at least get a PSA result and another scan done now.

    Mel.

  • If my doctor said "I don't work with Carboplatin" I would change doctors immediately. I'm not a doctor, but there are definitely forms of prostate cancer that respond well to platinum-based chemos, sometimes that's ALL they respond to, especially the kind of prostate cancer that attacks the liver. It is NOT usually the typical adenocarcinoma. I apologize for being so strong here, but I think you should get someone else.

  • Yes, Greg, exactly my thinking! In that moment all I could think is: I think we should change doctors!

    Paul thinks highly of this guy because he helped him so much three years ago with Zytiga. But he is forgetting that this doctor didn't help us because he is such a kind soul or because he likes Paul but simply because that is HIS THING, the only doctor who practices with Zytiga in this hospital.

    I wish Paul was more open to get a second opinion. Maybe he will be if he reads all these posts... I hope so. I would immediately go to any doctor in the world if I knew a good one...

    Mel.

  • There are lots of articles available on-line regarding the role of platinum-based chemotherapy agents in the treatment of Prostate cancer that has metastasized to the organs and/or soft tissues. This type of cancer typically has neuroendocrine features/characteristics and often does not respond to androgen-based treatments. The combination of Taxanes such as Docetaxel or Cabazitaxel and platinum-based chemos is often tried and can be successful. If you do a search on Google, you will find articles about it.

  • Mel, How are his liver numbers , ie ast, alt, alk phos Bilrubin. I myself am guilty of misdiagnosing small aches or pains of my own ,but I think this can also come from treatment also, I suspect he is starting to feel better by now, if he gets a temp over 100 call the doctor immediatly. I hate the food thing, for me now the foods I loved , some of them taste bad, Salad with good vegtables and a favorite salad dressing still taste good though. And potatoes any way is good for me too. Milk still taste good skim.

    Dan

  • Hi Dan.

    Unfortunately, we don't know about the liver numbers. In the scan report from July it said that half of the liver tissue - they used a different term for it which I can't remember at the moment - had been replaced by the mets. So he was actually only with half a functioning liver; very scary to imagine. The doctor said, "That is bad now. I mean, really serious. You should try Chemotherapy, if you are so inclined. But I would even be saying to yourselves, 'Is Chemo even going to work'." I can still hear these words as if they were spoken today.

    Anyway, back to your question: When we got the bloods done prior to the last infusion they said that everything looked normal.

    Mel.

  • Sorry to hear things are so hard for Paul. I found the third cycle to be one of the hardest. I think at least some of the problems are from not eating enough. I always feel so much better after eating, physically and mentally. And yes, sometimes you just have to force yourself to eat. Keep trying different foods, maybe you will find something he likes or at least something that is easier for him to eat. I went to a class on chemo and they said sometimes you just have get calories and whatever you can eat is O.K.

    Does he take Prednisone with his chemo? As far as I know, 10mg of Prednisone is recommended as part of the standard of care with Docetaxel chemo. On one cycle, I tried going without it once after around 4 to 5 days in. That was a mistake. The chemo side effects got MUCH worse within one day. It was twice as bad a normal. Nausea in particular was worse, but overall it was bad. They always asked me when I came in to get my infusion if I had taken my Prednisone that morning.

    Hope things start going better for Paul and also for you. You are doing a lot being there and supporting him. Make sure you are taking care of yourself and getting support too, it's really hard to be in that position. My family had to put up with me during the chemo and I know it wasn't easy at times. You are not yourself when you are suffering, I'm glad you understand that. Find someone to give you a big hug. Sending a virtual hug to you right now. :)

  • Ah Greg. That is such a lovely reply.

    First of all, I am and we are glad and somewhat relieved to hear from someone who found the third cycle to be the hardest. That gives us hope that it will be okay and that it is all going the normal way.

    Yes, Paul is taking 10 mg Prednisolone a day.

    Regarding food, Paul is a person who lives very much accordning to his feelings. So if he feels hunger he eats, and if he doesn't feel hunger he doesn't eat. At least that has been his way of life until a couple of days ago. Until we had a serious conversation about it during which I said, "You can't rely on your feeling now. Because your feeling and the lack of appetite and the nausea tell you not to eat. But you know that you have to eat to keep your weight and even more importantly to be able to take this harsh treatment." Now he is eating a little better. I have found that it is easier when I prepare food for him every two hours or so, something which he finds hard to hand over as he usually does those things for himself. But because he is so tired all the time it just happens naturally that I do it most of the time.

    Thank you for acknowledging that this is a difficult situation for me too. And thanks for the virtual hug. I really needed that. That is something I experience as a huge problem at the moment - that we don't have many friends and that most of my friends are in Germany, it would sometimes be so nice to just meet up with somebody and talk about everything or maybe for a while not talk about it at all and let other things be more important. At least I have started running with a former client of mine once a week, that is really helping a lot.

    Yes, I have to look after myself too. And I think I do that better and better these days.

    As for what you say that people who are suffering are sometimes not themselves, I really think it is good to always remember that.

    Thanks again, Mel.

  • Are there any support groups where you live? I find those really valuable because there are other people in your situation. They can give you emotional support and also often gave useful information. I would highly recommend it if you can find one.

  • You are right about that gregg, find a food you like. For me lt was goat cheese. Mmm delitious. Only time I ate it. Now back to the gruel. Some reward for the punishment I guess

  • Oh Mel.....my heart hurts for both of you. I'm sending another virtual hug with hopes that you will feel that we all care so much. I would call the doc.

    Jackie

  • Thanks Jackie.

  • Mel, sorry to hear of this but Paul is undergoing a powerful form of treatment. If I recall correctly he has been ill for some time and it sounds as though cancer fatigue has reached him. I am going through that now although totally unrelated in my case to the chemo. What is his PSA? What other IV drugs is he given at chemo time? Does he walk and is he younger than me? ,71. I am not a doctor but today and next Monday I will be talking with Oncos, cancer nurses and a group of around 15 patients and boy do we dig deep for answers. Much love to Bray.

  • Hi David (wasn't it David?).

    Paul is 68.

    He is trying to do some gentle exercise every day but at the moment is losing interest in that. Well, it doesn't help that the weather here is really terrible. But today we will got out together for a bit no matter what the weather is like! This being at home and being at home all the time only leads to more Depression and too much time to think.

  • I have to admit being at home was, and is, good for me. I do walk my nutty Saluki around 5 miles each day so in that respect he keeps me going. Depression for me is when the Zoladex decides to kick me, often I have tears but I know from our group at Charing Cross Hospital I am not alone. Being overwhelmed sometimes is not a sin and it's not pain nor fear of what lies ahead. Usually it's when my rugby team loses (joke).

    David

    Yoghurt, porridge and strawberries for breakfast today.

  • Hi David.

    Just back from a short walk around the estate. That walk took 10 minutes and Paul said he really had enough after that. I guess it is good that we got out, anyway.

    Mel.

  • I walked Barney 30 mins ago and dinner in oven for Shelagh and me. She'll see her last patient today around 6.30 then an hour to drive home. I now need cold shower again to overcome the polyneuropathy. Keep walkingxxxx

  • Hi David.

    Today we went down for a little walk to Bray sea front. Paul had to walk very slowly as he was feeling very weak and shaky. But he enjoyed the 15-minute long walk.

    Mel.

  • When I did chemo for six months, the last thing that I wanted to do was go shopping. Heck, I wouldn't even ride or drive to a casino three hours away. A morning on the bay ishing was out. I was content to stay in a cool house and veg out. Read a book until I napped. Watched TV until I napped. Worked maybe fours hours a day twice a week. I ate when I was hungry and it was never on the same schedule as my wife......

    Zofran for nausea. High doses of Vitamin C. 30 mg of Prednisone daily. Dexamethason on the day before and on the day of chemo. I also took Ketoconazole, 400 mg 3X a day for seven days and then Estramustine, 280 mg 3X daily for seven days. Then repeat. Some days I slept for 15 hours. I drove myself 70 miles round trip. I was a pain and most of all I avoided anyone who was negative, period. It was not a joy to be around me. Nagging pissed me off. I accepted Prayers, but spurned advice unless it came from my Medical Oncologist or his RN. I had an on call MD who I met with prior to blood work each week and with my Medical Oncologist. He was an Urologist in training to be a Medical Oncologist.

    What does his blood work show? Mine was taken every week before chemo. My chemo regime was Doxorubicin one week and Paclitaxel the next for six weeks. Two weeks off, this completed one course. Then and start all over. Did this for three courses.

    My advice, don't bug your husband, but do talk to the Medical Oncologist's Nurse as they are well versed in side effects and indicators that are important. Key is what does the blood draw show? Full work up each week.

    Keep kicking the bastard,

    Gourd Dancer

  • Gord Dancer.

    You were on a lot of medication.

    Paul is on dexamethasone the day before and on the day of infusion. 10 mg Prednisolone daily. Maxalon daily for nausea. 10 mg Lexapro daily - an anti-depressant -. Zimovane each night for sleep. 120 mg MST Continuous - a slow release Morphene medication for some unrelated but undiagnosed abdominal pain he has had for years. It is a lot to be taking.

    Paul is doing that too: getting up for breakfast, going back to bed for a while to read the paper and usually losing concentration after a while and then have a nap, then getting up and having a cup of green tea and one of the Fortisip drinks, then maybe doing a bit of meditation or maybe going for a short walk, then lunch and then hanging around for the afternoon reading, napping, watching tv. But we are trying to have a little routine in the day, especially with regard to food, because if Paul only ate when he felt like it he would no longer be with us I suppose.

    Thanks for sharing your thoughts on this.

    Mel.

  • Oh, and as for the nagging: Paul often tells me that I am nagging him, "Don't nag!" I hear often. Or, if I am not cheerrful for some reason, "Oh please, cheer up!". It is sometimes difficult to take these comments.

  • Take them. My wife and friends did for me. It will pass. One other side effect few talk about irritability. You just have to live with it in my opinion. To counter causes stress for everyone especially the person undergoing treatment. He already can't do what he is use to doing. But that to will pass. Smile. Sending Love and Praywrs for all.

    Gourd Dancer.

  • Yes, Gord Dancer, that is so true about what you say in your post about irritability.

    Which brings me to saying: Yes, there are support groups here and I have often thought of joining one and will do so soon. I am sure it will help.

    Mel.

  • Hi again Gord Dancer.

    We don't have his latest blood results. At Saint Luke's Hospital here in Dublin they do PSA and CT scan only after four rounds of Docetaxol...

    Mel.

  • I have had 11 sessions with Docetaxel + Carboplatin. Fatigue sets in when the extra steroids that are given wear off. The taste gets bad and you don't want to eat. Suggest you put lots of spice on food to give it taste. Fatigue will pass after a couple of days. Things I found get better as I addapted to my new normal. Normal is a lot slower for me but not all bad.

  • Mel, I am still far away from Chemo. I don't know even whether it is a Monster or an Angel. If the Monster can eat up my cancer I am prepared to kiss and hug it! I may bleed still I will survive long enough. With no real experience ................ all I can do is to pray for Paul and heal the wounds on you during hard times of understanding a gravely sick husband. Its like a wife transforming into a mother. You are a great partner and a care giver!

    May God bless you both.

    Sisira

  • Thank you, Sisira. I hope so.

  • Mel, I felt that way with my 1st thru 3rd infusions. I wanted to just lie there and could not eat , lost 15 pounds. I started my 5th round of docetaxel and carboplatin, last Wednesday. I discovered dexamethasone, after telling my oncologist that the QoL was zero and I was ready to stop chemo after the 3rd round. I am cautious about how much dexamethasone I take. This cycle (5th) I took 2mg daily on Friday thru Sunday. I still have fatigue and need naps, but I can eat and get up for 3-4 hours and function. I get nausea , Zofram did little or nothing, I discovered pickled ginger, which eases the nausea. (Get pickled ginger at any grocery store that sells sashimi or sushi). Peppermint gum eases some of the stomach discomfort. Steriods are powerful, especially, dexamethasone. It has 5 times the effect of prednisone. Also it's half life is 157 hrs in the body, so taking everyday or every other day raises residual levels in the body to high levels. Initially take for 3 days and if necessary, use a pill splitter and take 1 mg every 2 or 3 days of days thereafter. You can keep track of the residual levels with a spreadsheet. I found after 10-14 days, I could tolerate the effects and still function for a few hours a day, without dexamethasone. The steroid will help but not eliminate the side effects, at least for me. Wishing you the best

  • It is interesting what you say about the steroid. We have to talk to the doctor about it. First of all, though, we would really like to find out now if the symptoms come from Chemo or from the cancer...

    Yes, ginger is part of our every day diet. In fennel tea, in salads, soups, etc.

    Mel.

  • My understanding as explained to me without going into pharmacology. I took 30 mg of Prednisone daily for my six month trial. The sole purpose was that this drug has Prostate Cancer killing properties. I took Dexamethasone on the day before and day of infusion. Each had its specific purpose. My guy was in academia and research.

    The drawback and some of this was the Eligard/Lupron injections - my weight increased from 188 pounds to 280 pounds. Heavy steroid use will do that. End result, after over 13 years, zero medication except for 4mg of Androgel twice a week for add testosterone. I was able to stop the hormone injections in February 2010. Been on T supplement for six years. Weight is just over 240. Finally sought out a Personal Trainer and I expect to be at 220 by Christmas.

    Each of us is different. My treatment path worked for me. Each Medical Oncologist is different. Some research in academia and some are in private practice in the cancer treatment world. Some gave compassion and some don't. :) I smile when people complain about wait time for my guy, but he is the most compassionate person that I know. He always spends the necessary time to explain whether it is good news or bad news.

    Keep kicking the bastard.

    Gourd Dancer

  • Gord Dancer.

    Who is your guy? Are you in the states or the UK? Perhaps he would be good for a second opinion for us?

    Mel.

  • Mel, I am not in the UK. I am outside of Houston, Texas. Guessing it won't help you because of travel and expense, here is my guy.

    med.uth.edu/internalmedicin...

    GD

  • Hi GD.

    Yeah, that's a bit too far away for us all right :-)

    Mel.

  • Melanie

    You should know by now that all men are grownup babies...

    Get him a "Pint of Gat".

    Good Luck and Good Health.

    j-o-h-n Monday 08/21/2017 2:10 PM EST (Eclipse day)

  • Hi everyone.

    I am writing this aware that I haven't replied to each individual post here, although I think I have replied to most of them. But where I haven't replied it is not because I didn't like what the person was saying. It is simply that I have so much on my mind at the moment; not only with Paul's treatment but also with my own work.

    So yesterday evening I told Paul about what you were saying about getting a second opinion. Paul said he didn't think that was what he would like to do, but he would ask his oncologist if we could combine Docetaxol and Carbo Platin because of the liver-involvement. That is at least something, I suppose...

    He is feeling a little better today, I think, although he himself wouldn't be so sure. But we got out this morning for a 15-minute walk and, although he felt quite tired and shaky, he enjoyed it very much.

    It is difficult to know what is what with Paul. He has this chronic abdominal pain that can get quite strong at times, he has his Depression for which he is on an anti-depressant, and now he has the side-effects of the Chemo. I think it is all coming together for him at the moment. And that explains the lack of energy and interest in things and the fatigue and occasional nausea.

    The doctors said we would not get a scan until in two weeks time but we will get the PSA done next week. That will at least give us some kind of idea...

    Best wishes for now, hopefully things keep improving over the next couple of days!

    Mel.

  • Hi everyone.

    So, firstly, I can report that Paul is slowly feeling a little bit better. He woke up stronger this morning and wanted to get up and get out right after breakfast for a little walk that ended up lasting for 30 minutes. Then he did us lunch - something he wanted to do and had been wanting to do for a good few days but not been able to. Now he is having a ly down and feeling quite sleepy, but better for having done those things. So we think that, perhaps, we were over-reacting a littel; maybe what he was going through were really only the side-effects of the treatment...

    And, second, I can report that last night we got an email from his oncologist. We had contacted him on Sunday to find out if we could push the scan forward a little because Paul was feeling unwell and in the same email I raised the issue about Carbo Platin again. And the reply from last night was: yes, we can push the scan forward and, yes, the next step would be Carbo Platin, if this therapy doesn't work. So maybe this was a misunderstanding when the doctor said he didn't work with it.

    Mel.

  • I had a similar experience but with a different treatment. I enrolled in a clinical trial using two checkpoint inhibitors. The side effects were much harder on me than the previous two courses of chemo. I lost my motivation to do virtually anything and at its worst point, I slept about twenty hours a day. I could still take care of my self at home but shopping for food was out of the question. My wonderful wife took good care of me; she is the best thing that has ever happened to me.

    My advice is to once a day, supplement his food intake with one of those shakes designed to be a meal replacement. Next, try to get him to do some exercise. I did not do this and lost 30 pounds of what I believe was mostly muscle in seven weeks. I still have my gut but my legs are definitely less muscular.

    After about two weeks in a six-week break in treatment, I began to feel a bit more normal again and at four weeks I started to exercise, regain my appetite and put on weight again.

  • Thank you for your reply.

    Yes, I think your advice is very spot on.

    Mel.

  • Hi everyone.

    So tomorrow we are back in hospital for the fourth rround.

    My husband is still feeling very bad. And I am personally not sure if it is the Chemo, the cancer or his Depression coming through. Definitely judging by his behavior towards me sometimes I would say it is mostly depression.

    We have to see the oncologist tomorrow as well as a doctor from palliative care and my husband was also recommended to see a psychologist because of his mood swings.

    So we will see how all this goes.

    The weight is stable by 58 at the moment, although he had to throw up last night and still appetite isn't great. But that is also of course down to very little exercise.

    Mel.

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