I thought I would give you an update on our situation. And I would also be interested if some of you feel the same as my husband does.
So he got his first infusion on Monday and we drove straight home after that because he was very tired and sleepy.
He has been very exhausted every day, but we go out every day at least for a little walk. He has also been experiencing nausea and we are glad he has Maxolon, the anti-nausea medication.
There are two things that are a little worrying:
The first thing is that, although he is very exhausted, he can't really sleep at night. Restlessness keeps him awake. He has to get up to make cups of tea, drink a glass of milk in the middle of the night, etc. Do you experience this restlessness? Perhaps we should just go for longer walks to make the body more tired? But then his nausea increases.
The second thing is that he can't really keep his weight. He was 59 kg when he got his infusion and, since then, goes between 58 and 56. He is drinking two Fortisips per day and tries to eat normally.
So, as you can see, we are finding our way into this new situation.
As the wife of a man with this disease I must say that I find it heart-breaking that I have to encourage him to do things he doesn't really want to do or feels he can't really do. So, for example, he would say to me that he can't drink another of those Fortisip drinks because they are very heavy, but then I encourage him to do so and say that we need to keep his weight up. Or I encourage him to drink enough water, something that otherwise he might forget or put off.
Today we have an airshow taking place here in Bray. My husband loves that, and we will try to go and enjoy a bit of sea air at the same time.
Mel.
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Some people have a hard time sleeping because of the steroid that is generally taken with the chemo. I take Prednisone and at times it has made me feel "wired" and unable to sleep. Maybe his doctor can prescribe something.
The first week of chemo is the worst, then it starts getting better. Hopefully he will begin getting back to something closer to normal soon. I don't completely recover before the next infusion, but its close enough. For me, the nausea is the first thing to improve and with that food is easier to eat and tastes better. I find that eating small amounts often is preferable to big meals less often.
Glad you two are going to the airshow, I find it helps to try to find things to keep my mind off the nasty chemo side effects. I'm always happy when a few hours go by and I realize I haven't thought about the chemo.
I hope for the best for you and Paul. Hang in there, we are all with you and some of us are going through it too so we can feel with you and Paul.
Mel, I too am sorry Paul is having a hard time, I also thing the restlessness could be the steroid, I am on Dexamethasone day before day of and day after, I have been on daily 5mg prednisone for many years also. I am hoping things get better as you get into the second week.
You guys have my sympathies, along with those in the helpful replies from Gregg & Dan.
Hi Mel,
Although I haven't reached the chemo stage quite yet, I took prednisone with Zytiga, I had infusion reactions on my 2nd & 3rd of the 3 Provenge infusions (ending a week ago), & I began having trouble sleeping since all the way back when I learned that I had micrometastases to pelvic lymph nodes at the time of my RP. So I have a few suggestions:
1. Ask the med onc whether taking 5 mg of prednisone instead of 10 might be sufficient. I had a bad problem with easy bruising from prednisone. My med onc agreed to cut back from 10 to 5. It didn't cure the problem, but the bruises weren't as deep & likely to break open with minimal contact.
2. The ideal, & very safe, sleep remedy for someone who will need it for longer than a brief period of time is Trazodone. I usually take 5 mg at bedtime. Occasionally (usually because I have a flight or medical appointment early in the day), I take 10 mg. Personally, I also find it helpful to listen to music I love, from my iPod, through small headphones or SleepPhones.
3. Gentle reminders from a partner to eat, drink water, or whatever the patient needs to do, are a valuable contribution. Just keep it light & encouraging. If the patient objects, say gently that you're just reminding him what he needs to be doing to fight the cancer.
Fun distractions are great. Right now in the US, to fight the stress coming out of Washington, D.C. every day, many of us are relishing the work of political comedians on TV at night. Whatever Paul enjoys & can do right now boosts the spirits & keeps his mind off the difficulties. As a nurse practitioner told me over a decade ago--& it wonderfully transformed my life with PCa--you want to increase your pleasure hormones & decrease your stress hormones. Even oncologists believe this helps cancer patients live longer. It obviously helps us enjoy our lives more!
I can't stand watching the nightly news; too much politics here in the US. I've been watching Le Tour de France coverage. Nice armchair vacation when you are house bound in hot Arizona. Tour ended today but Game of Thrones is on tonight anyway. Good luck all with the challenge of dealing with this disease. I've been taking lorazepam when I have trouble falling asleep but I try to avoid becoming dependent on it.
I was in distracting entertainment heaven watching our Golden State Warriors all the way through to the championship (plus some college games during the NCAA Tournament).
I recommend that you read the answer I just posted to Mel, above, about Trazodone. You may well decide to switch from lorazepam, which should not be taken continuously.
My husband just had his 5th treatment two days ago. The side effects seem to be cummulative. After his first treatment we didn't notice much of a difference felt fine/ ate fine. However, since the 2nd treatment he has been pretty fatigued and his appetite comes and goes. He also has had nausea but only maybe 1-2 days per cycle. He uses medical marijuana to help with appetite and with nausea. His biggest complaint would be the neuropathy in his hands/ feet. We have one more to go. How many cycles is your husband having?
I completed 6 rounds of Taxotere with 5mg prednisone. I agree you might want to ask about reducing the dose.
Being able to sleep was an real issue until my son provided me with some marijuana, a strian that doesn't get one high but simply relaxes you. It's in oil form that is heated and inhaled using a device that looks like a small cigar with a tip. Very simple to use. It really helped me sleep and I would wake feeling rested. Huge help.
Of course as in all side affects, everyone is different.
Mike, you reminded me that in addition to Trazodone & music, I smoke some mellow marijuana within 3 hours of bedtime.
Mel, I'm sorry Paul doesn't have that option. But I'm wondering what would happen if Paul had a stiff dose of the oil less than an hour before bed. I was trying a CBD-heavy oil that worked well, except the 1 time I tried to stay up more than an hour after taking it. I had to hold on to things to make it to the bathroom, & then I got nauseous & sweaty. My wife woke up & helped me get to our bed, & turned on the ceiling fan for me. I felt good immediately, & dropped off to sleep. One of the folks who work at my medical marijuana dispensary assured me that everyone who works there (they're all patients) has had an overdose experience.
So it's something to avoid, but nothing like an OD on other drugs. Once you get in bed, you sleep well & wake up feeling no further side effects. And if you go to bed within an hour, you don't OD.
Actually, the more I think about it, you wouldn't OD on CBD only. It's the THC that you can OD on.
Hi Mel, sorry to hear about Paul's first chemo response but we are all different. I chose to walk about a mile immediately after each of my chemos. Parking was impossible so I used buses/trains to get home. En route to chemo each 3 weeks I also walked a good way and in-between put in around 4/5 miles walking my dog. I kept my appetite, worked hard to get weight down but the important thing is I had trouble sleeping AND I still do 18 months after my 10th chemo. I don't think there's a simple way out but many of the guys in here will help. By the way, Bray is one of my favourite places.
Mel I live in Twickenham, England. English father, French grandmother and mother from Granagh Castle, Kilkenny. I am a Butler, a well known name in Eire. Friends and family in Bray. My wife from Lancashire her mother from the Irish midlands. She and her family are nurses. Surgical consultants and nurses in mine. I can only offer advice on PCa based upon my own health although I do have a great relationship with my Onco and her team of Sp.registrars and always check what I plan to write. It seems I am lucky with a strong constitution but the meds have played havoc with my long term diabetes which has never troubled me since DX 30 years ago. If the cancer can't get you maybe the chocolate bar will!
I wish you and Paul a rapid return to a healthier situation. For me, I don't worry. I think the mind controls more than half the battle. David
Scruffy Butler was my beautiful dog who looked after me for 15 years, hence my 'code' name. God Bless
David? Did I remember your name right? You make a good point about the importance of a positive attitude, a will to live, a fighting spirit & an optimistic outlook.
Some of us bring that kind of attitude toward our cancer fight from Day 1. What I don't know is how hard it would be to adopt that attitude if it doesn't come naturally. But I truly believe it's well worth a try, for any cancer patient who would like to stay alive longer, & to increase his or her enjoyment of life, even during the rough patches.
Yes, the thing with the positive attitude and the will to live is very important.
Just on that subject, I would like to mention a book I am currently reading. The title is "When the body says no" and it is by Garbor Mathay, a doctor in Canada. He writes about the relationship between stress and chronic illness. It is very interesting.
I know Dublin and Dun Laoghaire as well. You are firtunate to kive in such a beautuful area. I am 1.5 miles from our national rugby stadium exit my back garden gate and within 100 yards can walk beside a tributary of river Thames straight to the stadium. The Thames is less than a mile away. Not Ireland but still lovely.
Take care of yourself and you will be better able to care more for Paul. See you both in Bray soon
I have taken 9 rounds of chemo and find it actually seems to get better as time goes on. I lost weight at first, but i ate and my weight is now up. I took naps every day at first now I never take naps. I start the day drinking 24 ounces of water. Do I like it, no, but I do. I also drink a lot of tea in the morning. I eat at regular times. Taste is terrible but I add salt and spice to give me some taste. I go for walks when someone can accompany me. I usually sleep ok except when I take extra steroids before and after each chemo session. Those steroids keep me awake at night.
You are right to encourage him to eat and drink. His problem there is in his mind as most of us can eat and drink but sometimes depression keeps us from doing that. Walking and not napping problably will help him sleep and you should consult with the Dr. about the steroids he is taking during the chemo sessions as they may be keeping him awake. I am 180 pound man and I take 2 prednisone tabs per day in addition to the extra steroids around chemo time and your husband I believe weighs a lot less so he probably should take lower doses. the steroids may be the cause of his sleep problem.
You make a good point that I hadn't considered: depression as a factor in chemo response. Whether a man has an ongoing problem with depression or just a situational depression in response to chemo side effects, it's something to discuss with a doctor since an anti-depressant would probably improve the patient's outlook & ability to cope (see Scruffybut1 above, & my response). Of course walking (or other cardiovascular exercise) & a reduction in prednisone dosage are good points too.
Paul has been experiencing Depression from very early on in life and is on 10 mg Lexapro daily.
I don't really think that the Depression is the reason for his problems sleeping. It is definitely true, though, that any change affects him very much, so even the change from the medication he used to be on to a new one now with so much new routine could be a trigger for the Depression to come through.
Mel--I'm very sorry that Paul has been battling depression for most of his life. How much help does he get from Lexapro? Are you satisfied that he's receiving the best possible med & dosage for his present circumstances? Does counseling help? It sounds like he's not in a position to adopt a fighting spirit, & that's really a shame.
I think one of the most important ones is that Chemotherapy is not only the infusion - that is me saying that not you - but that the treatment includes doing things you sometimes don't want to do but have to do. For example, you have to eat and drink to keep your strength up, to live a healthy life and to help the body cope with the fight against cancer. You can't simply say, "I don't feel like it". So Chemotherapy is more than just the infusion.
Yes, perhaps Paul's steroids should be reduced. Certainly something to be discussed with the doctor when we see him the next time next week.
I am completing my 3rd round of docetaxel with carboplatin. I have similar symptoms. I have no symptoms for 48 hrs, but get a large dose of steroids just prior to infusion. As soon as the chemo kicks in, I have to lie down due to the fatigue, next 5-6 days, lots of fatigue, spend most of these days in bed, getting up for an hour or two, then lying back down. I have found I can control nausea, dry-heaves and vomiting with pickled ginger, after trying 6 or 7 anti-nausea drugs. I also get very lightheaded on walking around house. Seem to be able to control by deep breathing. 2nd week, I am less fatigued, but still spend a good part of each day lying on the bed. If I stay up too long, I get nausea. 3rd week, gets better, but still get fatigued by 7pm. As far as weight loss, 1st round, I lost about ten lbs. I have now gained this weight back. As far as sleep, I have been using Ambien. Some nights I am very fatigued and need no sleep aid, but others, not the case, especially if my stomach complains all night.
If you're not taking Ambien more than a week at a time, you're probably OK. But you may want to see my discussion of Trazodone above, first in a message to Mel & then with more detail in response to Mel's question to me.
Hi, I had a three month cycle of nanoparticles of Taxotere. It was experimental, but the side effects were the same. I had none other than alopecia until the end. Then neuropathy rolled in hard. For that I'm treated with Lyrica and acupuncture. For sleep, I take 15 mg of mortazapine , which works wonderfully.
Thanks SO much for the update. My good wishes and prayers for both of you. It all sounds so scary but you're doing a very nice job of caregiving. Trazadone is an antidepressant that is used for sleep also. I hope you are able to talk with doc to get Paul some way to sleep. Elgie couldn't sleep on Xtandi and it was horrible for him. Take care of YOU too Melanie.
Well, there's the answer to what I wasn't sure about in a reply to Mel above: it's an antidepressant, as well as a sleep med.
I'll be on Xtandi any day now, unless I'm among the 10% who get a PSA decrease from the Provenge treatments I just had. If my PSA drops, we'll ride that out before starting Xtandi.
So you're scaring me a bit. Did Elgie try Trazodone for sleep while he was on Xtandi? Did it help? Did anything help?
As for the Xtandi....I do not think it does the same thing for everyone. Elgie tried Ambien, lorazepam, Xanax and trazadone but had some type of reaction. I stopped keeping an LG journal a few years back. It sure would have helped but life became a little more complicated with my own health issues. None of these sleep meds worked for him and the lack of sleep is basically why he had to stop. He was a walking zombie...which also made him very weak. II can barely remember the other symptoms I'm just so glad that he is not on any longer. There are many that do not have any of these side effects so try not to worry and try not to think about it because I'm sure you will be completely different. Who knows Neil.... it may make you sleep
Please keep us posted and let us now if your PSA continues to drop from the provenge.
Well my good wishes are definitely with you Neal. Please let us know your score.
I have Sarcoidosis in my lungs liver spleen lots of nodes and who knows where else, neuropathy and edema from Elbows to fingers and from knees to toes and they say Fibro also. Stress can be brutal to ones body. I have bad reactions to any of the meds that could be prescribed and can't take pain meds either. I have recently started 600 mg of magnesium to see if this will help and cayenne pepper cream to see if it will help my feet not to hurt so bad. Hot bathes help but I can't live in the tubby
That's rough, Jackie! Please let me know if anything helps.
I got my new PSA score today: 142, up from 80 before the Provenge series. Not surprising, since Provenge doesn't usually affect PSA. It extends life. So now I'll be starting Xtandi.
Okay, so basically you don't know how things are going but if the PSA was the only indicator you would think that the cancer wasn't effected by Provenge, right?
I think it is great that you are starting Xtandi now.
Fortunately, the lack of a PSA response probably only means that I'm in the 90% who don't get a PSA response, not that I won't live longer thanks to Provenge.
I'm glad you're starting the Xtandi. Im thinking the Xtandi will knock that psa right down. Please let us know how you are doing during this treatment. I'm wishing, hoping and praying that this will work great for you without any side effects.
I'll let you know if I find relief in something. I am working on cutting out a lot of sugar too. The B6 stopped helping. The super bio curcumin isn't helping that I know of but that doesn't mean it wouldn't help someone.
I did not know one could take that amount of melatonin. I'm so glad it is helping you to sleep.
I'm trying to learn a new phone....lol. Technology has escaped me
Melatonin is not only a sleep-inducer, esp. for older folks who don't make as much in our bodies as we used to, but also a PCa fighter. Patrick O'Shea has posted on our site about the research.
I'd be lost technologically if I didn't have help from my wife, & sometimes my adult son.
I did not know that was a cancer fighter awesome Neil I did not know you could take that much melatonin but I am definitely going to investigate. Very interesting. I will have to look at Patrick o'shea's page when I get home. Yes I think we would all be so lost without technology even though it has eluded me
Neal and Jackie. Paul's niece is coming over for a visit from the States next week. I sent her a message on Messenger last night and asked her if she could bring some Melatonin. She will. So we are going to try it!
Long term Neal. I'm on steroids for a while now but I am breathing better this year. Pain all over but getting by. Good and bad days. The neuropathy is scary. I walk around the house with 5 cushy pair of socks on so it doesn't hurt as bad.
Jackie, I've got central pain syndrome (neurologist's name, other docs called it neuropathy) in my feet, thanks to a PCa tumor causing a spinal cord compression in 2011. So I can not only sympathize, but empathize--except yours is obviously worse than mine. I assume you're on gabapentin (neurontin)? I'd be in terrible shape without it. I take 900 mg 4 times a day (3600 is the max per day, as you very likely know). Neurologist said mine is central pain syndrome because it comes from the central nervous system.
What do you do for the neuropathy when you leave the house?
Wow Neal..... That's horrible I'm so glad the neurontin is helping some. Those Spinal cord compressions can cause major devastation. I'm so sorry that happened to you. Lg was very blessed after having his schwannoma tumor. No effects. So far I am not able to take anything prescribed I've had severe side effects with each of the medications. I also cannot take pain medications due to bad reactions. The whole neuropathy feelings...pain..no feeling.. scares me.So its also called central pain.....hmmm.
Thicker socks in my rubber shoes. This started getting worse just this month. I do a lot of tub sitting...it is my only relief but as soon as I get out it's back.
Lg did his Guardant 360 today.... now wait 2 to 3 weeks for results.
I can discuss this with one of my colleagues in the clinic where I work - she is a dietician - and maybe she has some ideas of wat you could add or leave out, maybe there is something...
That would be an awesome thing Mel but don't take away from you and Paul. Any tips would be great! How did Paul sleep last night....you? Elgie uses these ginger candies for nausea if Paul needs something extra. We order them from Amazon. Has his appetite gotten any better? Are you able to get Marinol? It gave my sister in law a huge appetite when she was so nauseated and sick and couldn't eat due to kidney disease.
Oh, thanks for mentioning the Xtandi candies. Awesome idea. We will check it out.
No, thankfully, Paul's apetite is back to normal, although things are beginning to taste like nothing or even a bit off sometimes. But he is also having regular Fortisips; so even if he missed a meal or had a smaller portion, it would still not mean that he is losing weight immediately.
Last night Paul had a great sleep. He took some of the Kytasedativum pills from me. And he took a whole Zimovane sleeping tablet instead of only a half. He had a 9-hour long sleep and is feeling much better this morning.
Unfortunately, Paul didn't sleep at all last night. He spent most of the night downstairs reading or listening to podcasts.
We rang the doctor a little while ago. He suggested that Paul takes one more of the Zimovane sleeping tablets.
I also have something natural here, it is called Kytasedativum, one can get it in German pharmacies, it is a product based on Passion Flower and Valarian (I think it is spelled differently ). He will try that as well tonight. I am taking it myself sometimes if I feel too nervous to go to sleep.
As Jackie mentioned, Xtandi may not affect everyone equally. I've been on Xtandi for nearly 8 months, now. My sleep is the same as being on Lupron, waking a few times each night with transient hot flashes. My skin has become drier, and I have some light fatigue, but I still walk about 1 1/2 miles each day, and slowly mow my lawn every now and then. I have to pace myself in exercise and if outside in high heat. My resistant PSA on Xtandi dropped from 95 to 1.9, so far. I am very grateful for that.
Neal, my original diagnosis PSA was 5,006 in Nov 2013. Primary ADT with Lupron (+ Zometa) took my PSA down to 1.0. After two years, my cancer cells slowly developed "castrate resistant" properties. During the third year (while doing other consulting, imaging, testing, and some Provenge), what I personally began calling my "resistant" PSA rose from around 5 to 95 before I eventually started Xtandi.
(I'm going to stop hijacking Mel's original Post, now.)
That is wonderful news. I am sorry we never got to try Xtandi. We think it could have been good after Zytiga, but, unfortunately, the cancer grew more aggressively than we had anticipated.
I'm going to reply here...... that I am so happy to hear that You and Paul were able to sleep and Paul slept all night long to such a soothing description of calming smells of lavender and relaxing music.
Hi Melanie, my experience was that I had very restless nights while on chemo, which was helped greatly by medicinal oil. I finished round 6 a month ago and I'm still having trouble getting a good night's sleep without help. My appetite wasn't great while on chemo but has now returned to normal. I hope Paul feels better soon.
Paul used to suffer with Depression a lot long before we met. He was living at home with his mum who wasn't good to him. It was a very lonely life I would say. He eventually got counselling and the Lexapro medication. Depression hasn't been an issue for us for a long time. His mood is very stable and mostly good. So I was just thinking that perhaps being on Chemotherapy and battling with all the side-effects and not being able to be as active as before could bring a depressive episode on. But I don't really think so when I think about it a little more. I think he is just finding it difficult to get used to the new situation.
Last night, we had an oil diffuser with lavender oil on in the bedroom a couple of hours before going to bed. Lavender is supposed to be very calming.
Then we went to bed and listened to some quiet classical music. The lights were already switched off so that the body could begin to produce Melatonin.
And then Paul fell asleep and slept all the way through until this morning.
That's amazing, Mel. It's been available here for decades. It's not available anywhere in the UK?
I buy it from Vitacost.com--Natrol brand, 10 mg, 60 tabs. At my dosage, a bottle lasts 20 days, So I buy a few at a time. The other company I buy from is iHerb.com. I buy a lot of supplements. I see which company has a better deal, & buy enough things in each purchase to get free shipping.
No, Neal, Melatonin is not available in Europe. Even when I was still living in Germany we had to order it from the states. Regulations are so strict here. They allow all the drugs - the stronger the better - but they don't allow something like that!
Mel, I'm sorry to hear the medical/pharmaceutical lobby is even more powerful over there that it is here, in keeping beneficial supplements away from people.
Can I ask you something not cancer-related but related to this forum?
I don't know if I have mentioned this before, but I have a vision impairment - well, I am almost totally blind - and, therefore, I am using a screenreader when working on a computer. A screenreader is a software that reads everything out from the screen.
When I read messages from this forum - let's say our current thread that started with me telling you about Paul's difficulty sleeping - the replies are often not in any logical order. For example, when I read Neal's replies they are all over the place, although the messages went back and forth between us; it could sometimes start with the oldest and go to the newest, but sometimes I read some message from the middle of the conversation first... It is quite confusing. I would have thought that the last message from a thread - the one that was written last, or you could say the latest post - would be at the very end of the thread?
Now I am wondering if this is only a problem arising because of the screenreader software - something which can happen - or if for you, too, the messages appear to be in a bit of a chaotic order at times. And is there something I can change in settings so that they are in the right order always?
I'm just going to throw this out in case it's the answer. The location of my replies, & those of others, do not display on the page in the order posted. They display within the different threads or conversations on the page the reply was posted. Within each thread, they do appear in the order posted. Does that help?
Yes, Neal, perhaps it does. My screenreader must show the messages slightly different then, because sometimes the newest post in a thread does not appear to be at the bottom.
How silly of your screen reader, Mel. I have enough trouble finding replies in a long, multi-thread series, since you get connected a distance below the right spot, but at least posts are in the right order within threads. But clearly the screenreader does wonders for you. I would never have suspected. And your posts always look perfect.
So I think we have solved this issue with Paul's sleep. He just woke up from the second night of deep and uninterrupted sleep with the help of Zimovane and three of those Kytasedativum Tablets from Germany. He is feeling a lot stronger today.
We are going to do our shopping today in preparation for next week when he has his next cycle and go for a walk afterwards. Great that I have the day off and we can do that. Today is a good day for him, and we want to enjoy it!
Thanks for all your help/ideas regarding the sleep issue. Hopefully it won't be an issue again.
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I'm so glad the neurontin is helping some. Those Spinal cord compressions can cause major devastation. I'm so sorry that happened to you. Lg was very blessed after having his schwannoma tumor. No effects. So far I am not able to take anything prescribed I've had severe side effects with each of the medications. I also cannot take pain medications due to bad reactions. The whole neuropathy feelings...pain..no feeling.. scares me.So its also called central pain.....hmmm.
A warning about PC and supplements containing Cordyceps S.
My brother has advanced Prostate cancer
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Are there options past Pluvicto?
