Elgie Xtandi/ Insomnia: Hi Everyone... - Advanced Prostate...

Advanced Prostate Cancer

20,990 members26,160 posts

Elgie Xtandi/ Insomnia

erjlg3 profile image
86 Replies

Hi Everyone,

Sending healing thoughts your way :)

Just a quick message for AWARENESS ;)

Dr. Myers said that LG cannot take sleep medicines due to the interaction with Xtandi and his Cymbalta and his pain medication...Oxycodone. He said it is extremely dangerous. I guess we're lucky he's alive then because we did not know this and he was taking them. So he is going back down to 2 pills of Xtandi a day to see if this helps him to be able to sleep and also to see if it stops some of the side effects. This is no quality of life :-(

Jackie

Written by
erjlg3 profile image
erjlg3
To view profiles and participate in discussions please or .
Read more about...
86 Replies
CERICWIN profile image
CERICWIN

I've been on Ambien and Xtandi, and also morphine and Dilaudid all at the same time, and even previously on monthly Lupron injections, also.

However, I suggest you ask about putting Elgie on Zytiga and prednisone and stopping the Xtandi. Some guys simply cannot tolerate Xtandi.

I thought the Xtandi was going to kill me, for the first two months, so I don't know how I managed to stick with it, and the side effects throughout 25 months were always difficult. It's not worth it to suffer that much if Elgie cannot stand it.

Dr. Meyers is a splendid doctor, but sometimes we must decide for ourselves what is best for us. And sometimes we must assert ourselves that a medication can't be tolerated and something else must be used.

I can't offer medical advice, but from my own experience, I guided the doctors with my treatments, and they always listened to me and if I wanted to try a different med, such as dealing with the hot flashes, they went along with me.

I hope that this was of some help, you know that I care very deeply about both you and Elgie,

Eric

erjlg3 profile image
erjlg3 in reply to CERICWIN

To the highest regards I appreciate your candor, experience and thoughts. I will discuss all with lg. Your side effects didn't go away after 2 months did they Eric? Did they lessen after 2 months?

Do you remember how long Zytiga works for most?

As we do you precious person.

I hope you are feeling a little stronger and not so sick.

LG also getting sick on Xtandi.

We'll let you know what we come up with. He also wants to see the medical oncologist at Memorial Sloan-Kettering after they compare all scans.

Hugs Eric.

Jackie

CERICWIN profile image
CERICWIN in reply to erjlg3

I don't know how long on Zytiga, it varies incredibly how long a particular treatment will last for anyone. But I've never heard of Zytiga being quite as brutal with side effects as Xtandi. Zytiga is also given with prednisone daily.

I managed to get 25 months from the Xtandi, when the average maximum of success with Xtandi is only 18 months, so it bought me more than 1/2 year in addition......

It's just my feeling, but a doctor shouldn't keep a patient on such any medication which causes a patient too much distress. I hate to see anyone suffer, especially when there are other treatments available which may be effective and not cause as severe side effects.

I had another "crash" today, but recovered rather quickly, and my new "transitional facilitator" was here this afternoon, and she will assist me with my final arrangements, as well as anything else that I need---she's a real sweetheart and we hit it off beautifully. She gave me some flowers, and an "eye pillow," which is filled with lavender (my favorite scent) and can be put on the face for aromatherapy.

I also had a very long phone/Skype conversation tonight with a journalist who is very interested in my case, to write it up for a medical periodical.

I'm exhausted after the day's activities, so I'm going to bed, but it's been a really good day, all things considered.

Goodnight, Jackie, and I hope that Elgie can get some rest and feel better,

Eric

erjlg3 profile image
erjlg3 in reply to CERICWIN

I am so sorry that you had another severe crash today even though it subsided rather quickly. I hope these will go away and will stay away and you will feel so much better. It was so nice of the lady to give you lavender eye pillow. I'm so glad they are caring for you as best as they can and then some.

I am so glad you started the interview with the journalist and I so much hope that you will fill us all in as to where we will be able to read it. I know this will be very interesting to read.

You are so right I do not like to see anyone suffering either and we will be more active in telling the doctors what we would like to have instead of just letting them dictate to us.

Elgie had a PET Scan today and a general doc appointment. So sorry for the delay....sometimes it's so hard to keep up. Good wishes my friend.

harryflittle profile image
harryflittle in reply to CERICWIN

Eric,

Please share your remedy for "hot flashes" if you don't mind.

Thanks,

Harry

CERICWIN profile image
CERICWIN in reply to harryflittle

The first medication I tried for the hot flashes was megestrol, which was fairly effective. My uro had prescribed it, but then later on when I started seeing my medical oncologist, she didn't like the megestrol, saying that she felt that there was too much of a risk of blood clots with this medication.

So I discontinued the megestrol, and then found out about Depo Provera injections being effective for control of the hot flashes.

So my medonc gave me injections of the Depo. Subsequently a bulletin came out about the risk of pseudo-tumors in the brain being a risk for Depo, so I decided to discontinue the Depo, and just live with the hot flashes.

I finally had a bilateral orchiectomy in November, 2015, which allowed me to discontinue the monthly Lupron injections (I remained on Xtandi and Avodart) and the hot flashes still persist, but they're nowhere near as frequent..

So caution should be used if you want to reduce hot flashes.

Sometimes, the doctors would use an estrogen patch to help with the prostate cancer, and it also helps with hot flashes.

I don't know of any truly effective and safe method of eliminating hot flashes, without a risk of other, possibly worse, side effects.

I keep a very small electric fan at my bedside (I have a hospital bed in my apartment, and am frequently confined to bed) which is aimed at my head. I also have a remote-control pedestal fan to help with the worst flashes.

Eric

Neal-Snyder profile image
Neal-Snyder in reply to CERICWIN

RECOMMENDATION FOR HOT FLASHES: I just went to the Prostate Cancer Research Institute annual conference in LA. (Chuck Maack said to go & I was glad I did--it's for patients & caretakers.) Mark Moyad, urology professor at U. of Michigan (& a very funny character) says MAGNESIUM CITRATE & FLAXSEED both work. Hmm, maybe that's why I stopped needing megestrol: I take 3 tablespoons of freshly ground flaxseeds in my morning oatmeal.

cfrees1 profile image
cfrees1 in reply to Neal-Snyder

I'm going to start taking Flax Seed Oil capsules to see if they do anything. If not, I'll try the magnesium citrate next. They didn't have that on the shelves at Target last night. :)

Neal-Snyder profile image
Neal-Snyder in reply to cfrees1

Andrew Weil, the integrative medicine professor and author, says that the oil is far less bioavailable than fresh ground flaxseeds. I buy the seeds in bulk at health-oriented stores. I grind enough for several days and keep it in the freezer. I assume that qualifies as fresh ground, because it would be a pain in the ass to do it daily. Weil recommends 3 tbsp per day. I eat it with oatmeal or on a salad.

erjlg3 profile image
erjlg3 in reply to Neal-Snyder

Lol

Neal-Snyder profile image
Neal-Snyder

Jackie,

I've been on Xytiga for 2 years and 2 months. I know the average is much shorter, but also know guys have been on it much longer. It brought my PSA down from 160 to 13. Then it crept up to 30, but I started metformin and now it's 20. I haven't had side effects from it, but the prednisone causes me to bruise easily.

I take Trazodone at bedtime. Is that included in the sleep meds Elgie shouldn't take with Xtandi and his other meds? Unlike Ambien & other well-known sleep meds, which aren't supposed to be taken continuously, it's fine to take Trazodone every night.

Good luck!

Neal

erjlg3 profile image
erjlg3 in reply to Neal-Snyder

Hi Neal!

So glad to hear the Zytiga is working so well for you and so long ;) Glad the Metformin I'd helping too.Elgie has not tried the Trazadone but we will definitely be talking work someone to try it. Thank you so much. How much Trazadone helps you sleep?

Jackie :)

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

Good question. I wrote an answer to that down below before I saw this. I'm going north when I should be going south.

erjlg3 profile image
erjlg3 in reply to Neal-Snyder

I'm having a difficult time keeping up Neal lol. I'm hoping I'm not missing any replies ;)

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

I don't know, I can't keep track. As far as I know, you've been a splendid correspondent & I've enjoyed "chatting" with you.

erjlg3 profile image
erjlg3 in reply to Neal-Snyder

Thank you Neal! And I you. Late night again last night. 4:30 a.m. Eastern my time ugh.

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

I'm reforming tonight, Jackie. (My wife would laugh because she's heard that many times.) All I need to do is go to bed earlier. Between the trazodone, smoke, melatonin & listening to my iPod with headphones, I can get to sleep. I just enjoy staying up late, but I know I'd be better off not having to sleep so late (& sometimes having trouble sleeping in the morning, or having to get up & go somewhere). Are you the same or is it insomnia?

erjlg3 profile image
erjlg3 in reply to Neal-Snyder

I'm not exactly sure lately Neil. I used to love to stay up so late but now I'm trying to go to sleep a little earlier and I think the prednisone could be keeping me awake. I am awaiting the Melatonin sublingual. Hoping that will help because the Lorazepam or the Ambien are not helping lately. Not taking them together. Best wishes for you to be able to sleep very well earlier ;)

Now that LG is out of that fog he decided to try the Xtandi one more time. I am hoping his insomnia doesn't come back. At least he was able to get two nights of a little bit better sleep.

Hope it works for you :)

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

Good luck1 I take prednisone with breakfast and Zytiga at bedtime.

Hi

I can't give you medical advice only my personal experience with both Zytiga plus Prednisone and Xtandi. I was on Zytiga for about 9 months and then switched to Xtandi for a 2 months. The Xtandi did not work at all for me but made me feel much worse (mostly cognitive issues) then when on Zytiga. During my Zytiga I also did 6 monthly shots of Xofigo.

There is a strong suspicion that Zytiga and Xtandi cause a cross resistance to each other. Often times the use of the second drug is ineffective. That was true in my case with Xtandi after Zytiga. There is a significant debate among oncologists about the proper sequencing of these two drugs. I am not sure how interchangeable the use is once you have begun one or the other. This would need to be discussed with the oncologists. The MSKCC doctor's may think differently than Dr. Myers about the treatment protocol.

I normally do not use opioid pain medication. In my case for bone pain I have found that a powerful NSAID works well for me in managing the pain levels to a point I can live with, not pain free but a manable level of discomfort. However, there are risks associated with using NSAIDs and I see a cardiologist regularly.

When I have difficulty sleeping I take a small amount of Xanax. It is not a sleep aid but it helps me relax enough to fall asleep and go back to sleep when I wake up. I generally wake up several times a night.

My doctors and nurses are aware of all my drugs and I would not take any thing including over the counter or supplements without discussing it with them in advance.

One other question. Did your husband have an AR-V7 test before starting Xtandi. I only ask because although, uncommon, positive AR-V7 men generally do not respond well to either Zytiga or Xtandi. So it would not make sense to continue especially in light of the severe side effects.

Of course I am not an expert and this is only my opinion and my personal experiences.

My best wishes and hope this is helpful to you.

Bill Manning

erjlg3 profile image
erjlg3 in reply to

Thank you so very much bill! All of this is so helpful! We haven't heard of the test for him that he should get it until recently here. We'll ask MSK when we go soon. John's Hopkins Hospital is easily assessable to us. He's tried SO many things and nothing is helping. He went down to 2 pills and I do see a better difference in him but he is still having a difficult time sleeping.

My best to you Bill :)

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

You ARE up too late tonight, Jackie! I was hoping you were out West like me.

erjlg3 profile image
erjlg3 in reply to Neal-Snyder

I'd love to be out West Neal ;) I love the West!

We're in Pennsylvania.

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

I was born in Philadelphia. We moved to LA when I was 5. I had many upper urinary infections before we moved, & rarely got sick after. I don't imagine you could up and move (and housing prices are absurd here), but I wish you could. A new poll shows 6

Neal-Snyder profile image
Neal-Snyder in reply to Neal-Snyder

Oops, got kicked out. The poll shows 60% in favor of recreational marijuana legalization, 34% opposed and only 6% undecided.

erjlg3 profile image
erjlg3 in reply to Neal-Snyder

No Neal we can't . We just moved from MD a year ago. We decided not to go to FLorida or Yellowstone area due to children and grand children. We love love love the WEST ♡♡♡♡♡

If we could move...it would be near Yellowstone or South Dakota or Arizona or Montana or Wyoming.....maybe the lower Parts of Colorado. I have altitude sickness bad. ;) ;) ;)

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

The Bay Area is perfect for altitude sickness. But seriously, I figured you were around family. Our kids & grandkids are all in Oakland & Berkeley, so we can all get together in 20 minutes or so. Traffic allowing.

I grew up in West LA. We could ride our bikes to the beach. My friends & I were The Sons of the Beaches. Of course no one was talking about skin cancer yet. None of us ever got it, but we don't hang out on beaches anymore. But I love the coast.

If you're still up, go to bed. I'm gonna get ready myself. Last night was ridiculous.

in reply to erjlg3

LG and all, this subject has not come up at all as far as I know because it is probably risqué but I will bring it up anyway. If I were contemplating a move, my top criterion would be a state where a Death with Dignity Law exists. That means Oregon., Washington State or California. Keep an eye on Colorado. They will vote on the measure this coming November and the polls predict that it is going to pass. Of course as with all the other states, even if it passes, it will take time to implement because it has to survive many legal challenges from the Right Wing. Unfortunately, I am stuck in Florida which will probably be the last state to pass such a law. But I am working hard as a member and volunteer of Compassion and Choices to get the word out, not for me but for the next generation. My current project is to show to small groups and start a discussion on the film "How to Die in Oregon." It was the award winner in docudrama at the 2011 Sundance Film Festival. One can't watch it without being moved to tears. I am hoping for one to come out that would feature the late Brittany Maynard, the movement's new poster child.

in reply to

I've thought of that too. I am stuck in Arizona which won't likely ever pass a death with dignity measure despite having a large population of older retirees. The recreational marijuana proposition is on the ballot this year. Medical marijuana already OK here. Haven't needed that yet but nice to know that it is available.

erjlg3 profile image
erjlg3 in reply to

Thank you fredagnir ;)

in reply to erjlg3

You are welcome. And I am glad that by raising the issue I did not create a furor. My first attempt was a bust. I asked my church to host a showing with discussion and they nixed it. I was not surprised but my pastor was because he thought it would pass. I said to him, half jokingly, "You don't know your own congregation." Ha! Ha! I Hope I did not hurt him. But I have other groups in mind who are open-minded.

erjlg3 profile image
erjlg3 in reply to

One would hope there would always be options available.

in reply to erjlg3

Yes, there are now quite a few options. We have come this far and will continue to grow.

Neal-Snyder profile image
Neal-Snyder in reply to Neal-Snyder

Oops, I meant upper respiratory infections. Obviously, I have my mind on urinary issues as a result of my cancer treatments .

JoelT profile image
JoelT

FYI - The only place that the ARV-7 test is currently available is at Johns Hopkins, however it is not necessary to go there. It is possible to ship your blood to them. Probably not covered by insurance, but if you can afford it well worth the investment.

Joel

erjlg3 profile image
erjlg3 in reply to JoelT

We will definitely request this Joel! Thank you. Hope you're doing well :)

Jackie

mshariff profile image
mshariff

Want to sleep well? Have him to smoke some weed. I could not do without! Even my Enco is a believer in it now. We take enough chemicals as it is!

erjlg3 profile image
erjlg3 in reply to mshariff

Weed use to take the stress away and help him to sleep like a baby msharoff but not anymore on Xtandi but thanks for a great thought ;)

Jackie

celler6 profile image
celler6 in reply to erjlg3

I too had same sort of issues. Marijuana was not as effective on Xtandi. Then again, on it, I was falling all the time. Legs would just buckle and shake. Dr. Kwon of Mayo diagnosed it as Xtandi toxicity. He suggested a move to Zytiga and Prednisone. It has made a big difference and marijuana works for me now to sleep.

Good luck, Ms. Jackie. Clark

erjlg3 profile image
erjlg3 in reply to celler6

We will find out what's next to start as soon as we get to docs Clark. Sorry it did the same for you but glad Zytega is doing better. Best wishes to you Clark.

Jackie

Cancersucks profile image
Cancersucks

Ex had bad side effects on both Xtandi and Zytiga, although Xtandi was worse. He takes ambien for sleep, morphine and oxycodone for pain and a couple anti-emetics which can cause drowsiness, all while taking Xtandi or Zytiga. His ONC just asks him if he needs refills for these meds at every appt. Ex is only 45 and tries to stay active on good days.

Beermaker profile image
Beermaker in reply to Cancersucks

If medical marijuana is legal where you are, I would certainly give it a try. Standard pot has been shown to reduce insomnia, frequent nighttime waking, pain, and nausea / vomiting. It also reduces stress and anxiety. It won't work for everyone, but has been shown to reduce the number of prescriptions for those issues patients request.

Cancersucks profile image
Cancersucks in reply to Beermaker

We live 20 miles from the Colorado border. Marijuana has been a part of the arsenal since the beginning.

erjlg3 profile image
erjlg3 in reply to Cancersucks

Marijuana is not helping with the XTandi :(

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

None of the stress relief or help with sleep that he used to have? So sorry!

I was writing the message below when you posted this.

erjlg3 profile image
erjlg3 in reply to Neal-Snyder

Nope Neal. Yes, I need to try to sleep. I'm having a tough time sleeping tonight lol.

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

Yeah, it's late. Hope you're on PDT like I am. (Time zone, not a drug.)

Neal-Snyder profile image
Neal-Snyder in reply to Cancersucks

I get it in my friendly Oakland dispensary now. But I was in Berkeley in the Sixties, & then Oakland. So it's always been available from friends. It's always made ANY mood I was in--even a really good one--better. If I'm not doing anything in the evening to contraindicate it, I like to have a little smoke. Then I have another at bedtime to help me sleep.

It's also helped me cope with some major stresses in life, like the bar exam (but not until I was done studying for the night), & the diagnoses of first PC & then advanced PC.

A dispensary helps you choose a strain that provides the type of high you want. I like "cookies," which provides a happy, mellow, sociable high.

My enjoyment of marijuana has meant that I've had no interest at all in excessive drinking.

No one has ever died from cannabis. Cannabis, unlike alcohol, does not affect gross judgment.

Enjoy! And get some sleep!

P.S. I also take 20 mg of melatonin at bedtime.

P.P.S. We live just below Oakland now, in San Leandro. And my dispensary is opening a branch here this month.

erjlg3 profile image
erjlg3 in reply to Neal-Snyder

So nice that you have a dispensary! No choices here. Don't even think it's legal here. I can't for too many reasons. Although I could sure use a cookie lol. I think it's great to help aND heal with so many issues :)

Thanks so much Neal ;)

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

Where are you, Jackie? Wish you could have some cookies. Looks like we're going to legalize it for recreational adult use in the coming election. We were going to a few years back but the US Attorney General pulled a stunt & scared people away from it.

erjlg3 profile image
erjlg3 in reply to Neal-Snyder

We're in PA Neal.

erjlg3 profile image
erjlg3 in reply to Beermaker

Thank you Beermaker. It worked for all of those things before the Xtandi. It worked phenomenally for all of those things before Xtandi.

erjlg3 profile image
erjlg3 in reply to Cancersucks

Thank you cancersucks. I just wish one would work for him.

My best to XMAN :)

erjlg3 profile image
erjlg3 in reply to Cancersucks

Wow! I wonder why he said it is extremely dangerous.....

Cancer09 profile image
Cancer09

Dollarb58. My husband has had 2 inj of xofigo ..he had to postpone yesterday's as his blood levels were very low . He is being transfused as I write ..he had a pain flare after the 1st injection ..his pain has improved with this treatment ..he has run all courses of chemo and radiation and don't know what the plan will be ..Xtandi was the worst too many side effects .jevtana took its toll too .he was working 40 plus hours on Zytiga however the psa just rose ..what are they doing presently for you psa checks monthly ?? He is still getting Xgeva lupron and procrit ...cericwin ..thoughts and prayers

in reply to Cancer09

Hi

I am taking a low dose oral chemotherapy drug called Cytoxan. After failing all the approved stuff my psa was rising and my oncologist suggested we try the Cytoxan. I have been taking it for about six months. I think it has helped and I had a good psa response. Scans have been mixed with some progression and some improvement. It is not a new drug and it is used to treat many types of cancer. I take it in a low dose pill but it can be administered by infusion for other applications. There were a couple of small studies showing some men responded to this drug (try googling it).

Not terribly expensive like some others it costs me about $43 per month on my Medicare part D plan. So without any other viable options it was worth a try. I believe it has provided me a nice window of time. How long it will last is anyone's guess.

I have not heard of anyone else who uses this drug. Frankly, I thought my oncologist was nuts when he suggested it. I do not think it works for everyone but it has for me.

My cancer and treatment history is in my profile on this site.

I hope you husband feels better soon. It may be the Xofigo is compromising his bone marrow. It is one of the potential bad side effects of Xofigo.

I am not an expert only a patient.

Good luck

Bill Manning

Cancer09 profile image
Cancer09 in reply to

I just read your profile and your reply to my husband ..we both said its like a mirror image ...I'm following in his foot steps he said ...I thank you ..you gave us more hope .his foundation one suggested olaparib too but dr felt it would not work nor would other older type chemos that are to similar to taxotere and jevtana ...I will inquire about cytoxan post xofigo injections ..

erjlg3 profile image
erjlg3 in reply to Cancer09

I'm so sorry he is feeling so bad. Elgie stopped the Xtandi. He could hardly get out of bed he became so weak. Nausea vomiting insomnia. We'll see what's next.....I'm not sure when. As of today....with 2 days of no xtandi....he is doing so much better.

Elgie gets f18 pet scans to monitor cancer.

My best wishes and prayers for your husband.

Jackie

Charlean profile image
Charlean

Jackie, just wanted to add that Harley did Zytiga first and the side effects were just as bad as the Xtandi. It only helped lower the psa for about 2 months and then it went back up for the next three, the reason for switching him then to Xtandi. The side effects were miserable, aches, severe stomach pain and diarrhea, weakness in his legs, breathing problems, insomnia. Literally, we got little benefit and lots of misery. I hope he able to tolerate the lower dose but it didn't help my husband to do that. From reading others' posts, it almost seems that those who can't tolerate one have similar problems with the other. I could be wrong on that but just seemed that way. Harley also had bad luck with the Xofigo, anemia and worsened pain as well, so hard to say, he may just have had really aggressive cancer that wasn't helped by much, but I hated watching him unable to enjoy his days and feel so sick that he didn't want to do anything. I really pray that Elgie finds something that helps without taking away quality of life. But in the end, that really is so important. He was so scared and desperate that he did everything for as long as he possibly could but I feel like we missed so much by spending all that time dealing with all the treatments, only to lose him anyway. My heart goes out to you personally because I know how much time and energy you are giving to helping him make all these decisions, with that constant fear in your heart. My prayers are with you. Charlean

erjlg3 profile image
erjlg3 in reply to Charlean

Oh Charlean.....what you and Harley went through.....brings a flood of tears. And knowing the quality of life is so important after witnessing no quality :(

Thank you sweetie.....the fear is definitely here.

Thank you for sharing so much helpful info. You're an inspiration ♡ Take care of you♡

Charlean profile image
Charlean in reply to erjlg3

Thank you Jackie, but I am not an inspiration. I just feel that we became like a family with everyone here and without so much shared information and support from everyone, I think things would have been far worse for Harley than it was. I know what that support meant to both of us. No one else can know until they've been there. Even now, I can't really speak to my family much about my feelings because they want me to "get over this and move on". They don't understand. And the loneliness. Lonely is not a strong enough word for what I feel.

I lost my parents, my brother, and many others but nothing like my spouse. I had no idea how alone I would feel.

There is a deep silence that comes with losing your spouse. And it doesn’t matter if you’re standing in the middle of a crowded room, you will still notice it. It’s the quiet that comes when you don’t have that familiar voice whispering in your ear, “Are we having fun yet?" It’s the missing sound of two glasses clinking together on your anniversary. It’s the absence of someone breathing soundly next to you as you go to sleep at night or reaching over to touch them.

My friends and family are so good about trying to make sure that I know that I'm not alone. And I know I could call up any number of people if I just wanted to hang out. But I am alone. No one can understand until they've been through it.

I guess part of why I am still reading the posts here is because I know you all understand better than most what we go through and I just hope anything I can share might be of help to someone down the road. I wish the best for all of you and if any of the caregivers or family members are unfortunate enough to be where I am now, remember we are here for each other.

Charlean

erjlg3 profile image
erjlg3 in reply to Charlean

Everything you said is heartbreaking Charlene except the part that we are like a family and I'm so glad you are still here with us. I'm so so very sorry you're Harley isn't physically with you :( There is no grieving time limit....I think it just becomes the new normal. You're in our hearts and the sadness I feel from the beauty of the sadness and lonliness that you write about is heartwrenching. My arms are wrapped around you so tight Charlean ♡

Neal-Snyder profile image
Neal-Snyder in reply to Charlean

I agree with Jackie. I'm really glad you're still participating & contributing here, Charlean. I very much hope that you're doing well.

Charlean profile image
Charlean in reply to Neal-Snyder

Thank you Neal. You have been a great support as have so many others. We found support from strangers who don't know us but have enabled us to confide in people who know exactly what we've been through. We tell these strangers some of the most intimate details of our lives, and don't have to ever question whether they will think us crazy or not. They get it. While our struggle did not have a happy ending, I keep praying that many of you will. I look forward to those successes and I hope you will be one of them, Neal.

Charlean

Neal-Snyder profile image
Neal-Snyder in reply to Charlean

Wow, Charlean! I just found this. What a wonderful message! You are a very special & sweet person, & a fine writer, too! Of course I wish you great happiness in the future.

Neal

JoelT profile image
JoelT

It is good to know that someone else is also doing it, thanks

Joel

Hi Jackie, has LG tried Trazadone? My PCP prescribed it for my sleeping problems. It's actually an antidepressant, but prescribed off-label for sleeping problems. I don't take it as often now, but it worked well for me. It affects the serotonin in the brain somehow. Just a thought for you guys to look into.

Peace, Joe

Sorry, missed it above in Neal's post. But I might add that while trying melatonin, it seemed to me that I developed a resistance to it.

erjlg3 profile image
erjlg3 in reply to

Hi Joe!

Going to request it very soon! Thanks so very much! I hope you are happier and having some enjoyment :)

Jackie

Neal-Snyder profile image
Neal-Snyder in reply to erjlg3

You may have to experiment to find the right dosage. Mine has been 1 for most nights & 2 for special circumstances, like trying to fall asleep with an early appointment or flight the next day. Recently I had to test whether the trazodone was causing dizziness when I got up (it wasn't). In the process, I found that I can use half as much now, so 1/2 or 1.

herb1 profile image
herb1

hi, tough sledding, eh? Sorry to hear that. I waited to answer until I had read all other responses on the sleep issue. First marijuana, might work, but don't for a minute think it's NOT a chemical, it is, in fact, it's a bunch of chemicals.

Wanna try a very simple "chemical" that I find helpful when sleep is a problem: a slice of processed american cheese! Don't ask me why, but it works for me. Yes, it too is a chemical; so is wine, which was going to be my next suggestion.

But my real reason for responding was to suggest holistic approaches--acupuncture, self-hypnosis (which does have some history of success with breast cancer patients), etc. There are also homeopathic drugs, but I (and probably Dr. Myers) don't know much about these. Many hospitals are now incorporating alternate medicine; might be worth inquiry.

Good luck.

herb s

erjlg3 profile image
erjlg3 in reply to herb1

VERY good suggestions Herb s!!!

Maybe that's why I have to have about 3 slices of cheese every night at bed ;) or maybe because I just love cheese ;)

Going to check in to all of the above from everyone and you Herb. It's so difficult to watch someone suffer and you are helpless.

Thanks for your thoughts, suggestions and info.

Jackie ;)

erjlg3 profile image
erjlg3

Nalakrats we will order the sublingual melatonin we only have the kind that you take by mouth. Definitely worth a try. Thank you so very much for all of the info on it. Wishing you all the best and thanking you again.

Jackie :)

erjlg3 profile image
erjlg3 in reply to erjlg3

Ordered

Neal-Snyder profile image
Neal-Snyder

Wow, Nalakrats. I've been using 4 5mg pills at bedtime since I read years ago about some PC research where they used 20 mg, & it's all gone to waste because it wasn't sublingual. But wait ... I don't have any stomach acid to speak of, because of all the prescription antacids I take. No more heartburn & all the very spicy food I want. And maybe most of the melatonin isn't being wasted. But I'll look into the sublingual stuff. I buy my Bob's Red Mill (employee-owned) Organic Extra Thick Oatmeal from Vitacost. Free shipping for orders $49 & above. I buy my supplements from iHerb.com, & get free shipping there, too, & great deals. Both companies deliver quickly.

erjlg3 profile image
erjlg3

I am ordering it in a few minutes Nalakrats! Thank you so very much. I'm glad it helps you ;)

erjlg3 profile image
erjlg3 in reply to erjlg3

Ordered

Neal-Snyder profile image
Neal-Snyder

Thanks Nalakrats. I get up multiple times to pee (combo of a RP, radiation & spinal cord compression from a PC tumor). In your opinion, are all medications and supplements compromised by stomach acid? That would mean most of us were being shockingly wasteful. I am getting obvious benefits from some of my meds, including Zytiga & metformin. I do understand there's a quicker response when using sublingual meds or supps.

Neal-Snyder profile image
Neal-Snyder

I'm grateful, because this is very helpful, and I'm very impressed--congratulations! I'm on the verge of buying Mark Moyad's book on supplements; do you have an opinion on it? If you don't mind, please give me your opinions on vitamin D3, omega-3 fish oil, CoQ10 & Zyflamend.

I took a closer look at your screen name. Is your name Alan Stark (if you don't mind saying)?

Neal

cfrees1 profile image
cfrees1

I know that there is a lot of opinions on supplements, which are good and which are not. I don't have a lot of trouble sleeping, but when I do, I take a tablet of Calcium, Magnesium and Vitamin D (popular combo in the vitamin aisle). For whatever reason, that almost always knocks me out within 20 minutes. And the Calcium and Vitamin D has been recommended by my oncologist anyway to help combat bone density loss due to Lupron. Maybe worth a try?

erjlg3 profile image
erjlg3 in reply to cfrees1

He's on all 3. Cfrees1 ;)

It was the Xtandi. He stopped it and now he is sleeping as of last night :-) thank you so very much.

I've been taking the capsules all this time. Will have to try the sublingual. I use sublingual for B12 now.

erjlg3 profile image
erjlg3

Elgie stopped the Xtandi. He became too sick and too weak to fast. Last night he finally slept well. Thank you all so very much. We'll figure out the next step soon.

celler6 profile image
celler6

I had the same problem as he did. Truthfully, I found relief in Trazdone, but even prior to that, marijuana. Yep, that same drug vilified in the 50's and saw resurgence in the 60's is now being more and more linked to beneficial effects of appetite, sleep, pain relief, lowered stress and anxiety, and calm. Please try it. It replaced some 6 medications I was on!

erjlg3 profile image
erjlg3 in reply to celler6

None of it has helped on the xtandi. The Trazadone gave him more extreme restless body. The Marijuana did nothing whatsoever while on xtandi. He stopped xtandi.

Thank you so much :)

Neal-Snyder profile image
Neal-Snyder

Nalakrats, I truly appreciate your excellent assistance here. But first, your screen name is very clever, & my further detective work is a failure so far.

I definitely want to get Natural Healing instead of Mark's book, But I haven't found it, either. Can you give me exactly what I need to type in on Amazon to find it? Thank you.

Thanks for your comments on Zyflamend. I have no prostate either. I drink white tea--more health benefits & better taste than green. I order it from Teatulia.com, a socially & environmentally conscious company in Denver that produces (in Bangladesh) the best tasting one I've tasted.

I eat pumpkin seed kernels with a dry tamari sauce, as sold in bulk by Berkeley Bowl, a market that began in an old bowling alley. I thought saw palmetto had no value once you have prostate cancer, or that they were for BPH, is that wrong?

Just to clarify, are the items in your list after green tea, including nettle, ginger, rosemary, things you use in food, or supplements you take?

I've been taking 5000 IU once a day of D3 for years, but I'll double it to twice. The concept of D3 as a drug is new to me, but I'm a fan of D3, so I like the idea.

I partly take Omega 3 to combat the Omega 6 I assume I'm getting in the Asian restaurants we frequent, & in most restaurants, so I hadn't thought of taking anything that includes it. But then I wasn't even aware of Omega 9.

Very useful info on CoQ10.

On everything you've discussed, you're very thoughtful to suggest where things are available for a good price.

Nalakrats, I don't know whether I'd be burning you out if I asked you about any more supplements, or if you truly don't mind providing more invaluable information. Please let me know if you're open to more questions right now. Thank you very much again for all your help to date.

Neal

Neal-Snyder profile image
Neal-Snyder

I'm almost out of Host Defense Organic Mushrooms My Community Comprehensive Immune Support (2 a day upon rising). These were highly recommended to me 10 years ago by Donald Abrams, the integrative oncologist at UCSF & co-author of Integrative Oncology. Before I spend (not inconsiderable) money reordering, do you have an opinion on them?

Detective work is fun for me, & was very valuable in my cases (primarily in suggesting lines of investigation to my investigators). But I'll put it aside (re: theanine) knowing you really want your privacy. You're entitled to it.

I did see Prescription for Natural Healing by Priscilla Balch, but wasn't sure it was the one you meant. But apparently it is. I'm surprised the 2010 is still up to date.

Andrew Weil says freshly ground flaxseeds are far more bioavailable than flaxseed oil. Do you disagree? (I'm taking 3 tbsp daily.)

I will check out Team Aspire & look for your supplement approach.

I've been using iHerb.com for years for supplements, & Vitacost more recently for oatmeal. I'll have to compare supplement prices on the 2 sites.

You may also like...

My husband's experience with Xtandi

my husband's recent experience with Xtandi (go to my profile and see my first post if you want the...

Weaning off of Xtandi

told me that he cannot described, it. He said it feels like feel doomsday. We met with his...

xtandi

Got a new xtandi prescription yesterday from the manufacturer. This pill is a small round orange...

Xtandi

Well I stopped taken Xtandi for 10 days and started on on pill a day for three days then stopped...

Sleep problems on Xtandi

wondering has anyone experienced sleep problems on Xtandi? My Father takes it at 10am, he does have...