Elgie Xtandi/ Insomnia

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 :-(


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95 Replies

  • 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,


  • 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.


  • 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,


  • 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.

  • Eric,

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



  • 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.


  • 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.

  • 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. :)

  • 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.

  • Lol

  • 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!


  • 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 :)

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

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

  • 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.

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

  • 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?

  • 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 :)

  • 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

  • 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 :)

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

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

    We're in Pennsylvania.

  • 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

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

  • 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. ;) ;) ;)

  • 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.

  • 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.

  • 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.

  • Thank you fredagnir ;)

  • 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.

  • One would hope there would always be options available.

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

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

  • 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--I think Foundation One does it---My tissues are being done as I write this, and believe I will get a AR-V7 response as part of the 310 Gene Splices they are doing.


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


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


  • 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!

  • 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 ;)


  • 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

  • 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.


  • 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.

  • 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.

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

  • Marijuana is not helping with the XTandi :(

  • 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.

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

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

  • 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.

  • 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 ;)

  • 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.

  • We're in PA Neal.

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

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

    My best to XMAN :)

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

  • I would suggest the use of Melatonin---in sublingual form---since the Pineal gland make it anyway, it would not be like adding a foreign substance. 3mg should do nicely, and if he gets up to go to the bathroom, use a 1mg melatonin to knock you out. Should not interfere with the other drugs. Must be sublingual. The ones you swallow get eaten up by the stomach acid, and is a waste of money. Best deals are on Vitacost.com---if they do not have a 3--a 2.5 will work as well.


  • 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 :)

  • Jackie--the cost is really low at Vitacost, I think for the 2 it might be 10-12 dollars for a 2month supply---as I said the 3 or 2.5mg should do the work of putting one to sleep. It is placed under the tongue. One thing that will also help, is the room must be dark. As I said if one gets up to go to the bathroom, you use the 1mg melatonin. If you get up 3 times--you use the 1melatonin 3 times. Puts you back out quickly. there is no fog upon awakening--some people think that they are dosed with something--not true, it is that the melatonin puts you into a deep REM stage of sleep--which is the restorative stage--lots of dreaming. I buy the Vitacost brand name--and you will recognize it on the site--as they call it Melatonin Quick Dots.


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

  • Ordered

  • Ordered

  • 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.

  • Neal--the sublingual, goes directly into the blood stream from under the tongue---do you want to every night take a sample of what is or is not in your stomach? Bypass that nasty sucker. AS I posted earlier--Vitacost is where I get mine--probably 12 dollars for a 2 month supply for both the [3 or 2.5mg, and the 1 mg to go with it. If you get up at night to go to the bathroom, don't fight it--go. And when you hit the sheets you put a 1mg under your tongue and you are back in dream land. I use the Vitacost branded Quick Dots---as they dissolve quickly under your tongue---make sure the room is dark---that helps the falling asleep process. I have been using for 20 years, as I travelled to 26 countries across a bunch of time zones.



  • 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--you asked a question that has multiple answers--and the answers are per each supplement. So you have to be a Food Scientist as well as a Nutritionist. One knows the chemistry as something is going thru the body and the other knows about the value of what one is taking.

    So let me stay on the Melatonin subject. Our bodies --the Pineal Gland in the brain makes Melatonin--but as we age we make less. That is why it has been said that older people do not need as much sleep as younger people, as they are less active, so they need less sleep. Bullcrap---The reason they sleep less is their Pineal Glands do not make as much Melatonin as when they were younger.

    So we have had for 20 years supplemental Melatonin. Interestingly, Melatonin is a Hormone, yet we can buy it over the counter. The ones you swallow are affected in 2 ways, the size of the molecule, makes for difficulties getting into the blood, and the acid of the stomach, changes some of the Molecular structure of the Melatonin to make some of it ineffective. So if you take a 10mg Melatonin you will get enough in you, for sleep.

    Or you can take one of the combo products like Melatonin and Theanine which acts a little better. By the way this writer here, using Nalakrats as a screen name is the one who discovered Theanine, in Tea and created the Synthesis for it in 1967.

    But lets look at your particular issue, which is mine also. I get up 4 times a night. On a good night 3 times. In the case of Melatonin it can be put into a form, that gets it almost instantaneously into the blood: Sublingual! The nice thing about it--it is cheap it puts you to sleep fast if the room is dark[a 3mg or 2.5mg], dissolves in about 3-5 minutes. I sometimes am out cold, before the Melatonin has all dissolved. The reason for Having the 1mg ones also as you are awakened to go to the bathroom, when you get back to bed you pop a 1mg under your tongue--as a booster, as the original dose is still working, and you pop right back to sleep. If you get up 4 times you will use 4, 1mg sublingual doses as the night wears on. You may not remember how many times you woke up when you have had enough sleep. I cannot emphasize too much you must keep the room as dark as possible. Melatonin works best when it is pitch black. Best place to buy is Vitacost.com, look for the Vitacost brand called Quick Dots under Melatonin--they dissolve very fast under the tongue. About 12 dollars for 2 months worth.

    As to other supplements I might be able to offer you the best choice in terms of format, and who has the best ingredients.


  • 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)?


  • Hey Neal, saw your post last night, It was too late to respond. See you are playing detective and wanting some advice at the same time. First my name is not Alan Stark--Nalakrats backwards. It comes from Stark the character Scientist Stark, from the Avengers Movie, and my cat named Alan.

    As to Mark's book, I would not waste my time. If you want something that professionals use, as I use also, Go But 'Natural Healing'. It is written By Peer Reviewed Naturopaths, Pharmacists, PHD's and is a guide for every, Herb, Vitamin, Mineral, Amino acid, and others. It also offers 300 pages of prescriptions for, 100's of diseases, using natural supplements, and diet advice on what to eat and avoid I.E. if you have Gout. It offers a supplement program along with foods to eat/not eat. Been in my Library, 20 years and I buy the new versions about every 2 years--buy on Amazon--new 18 Dollars, Used various prices.

    Ok to your Supplemental questions. Let me start with Zyflamend. I would call this a Multi-Herbal, where this is trying to be all things, but does not have enough of any one to be of therapeutic value. Panel Group I use, gives it 1.5 Stars out of 5. It is more directed for Prostate health, as opposed to Prostate Cancer. The only Mineral in this product is Selenium. And in the oxide form, instead of a form that is in clinical phase testing-> Sodium Selenite. Green tea, better off drinking the tea; pumpkin seed extract, saw palmetto, nettle, ginger, rosemary etc. I would not waste a penny on it, as I have no Prostate.

    D3 is a Must. In Phase 2 Trial Testing at prestigious MD Anderson. Absolutely shows it has an ability to stop/slow Metastasis. I recommend, 5000, IU's twice a day. Some argue with me that the dose is too high--well we do not need D3 as a Supplement we need it as a drug. MD Anderson is injecting into subjects, at high levels. Omega 3, not shown by itself to fight prostate cancer; has more value for heart health. It is one of my Prime Supplements. I use Mega EFT, 2160 mgs, twice a day. I Get mine from Vitacost.com. Great price, and has 3,6,and 9 in a proper ratio. Omega 9's are always ignored but they have health benefits. As to Co Q-10, again it is more for heart health. It is a must for people having medium to severe heart muscle issues. Always use the water soluble version, not the original oil soluble, as the water soluble is very absorbable, and more effective. I buy mine at Vitacost.com again--I buy Jarrow's Q-absorb 100 mg and I take one a day. Best to take at night after dinner--and Q-10 has an added benefit of fighting off some of the side affects, for those that have them, from taking Statins. I think I answered all your questions.


  • 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.


  • Why all the detective work--want to know if I am/was well known in industry. Yes I was, and published--so I prefer to keep hidden. So you can as the Italians say [forgetaboutit]. I just went to Amazon, and in search bar typed in Natural Healing in all Departments, and up came a used Natural Healing one for 5 dollars---2010 edition--I have that one--still good for today--or search further for a later edition, if you like. Well enjoy your tea, But since I did some of the earliest Tea Chemistry work in the 1960's. I can tell you that the polyphenols in tea that are supposed to be beneficial have molecular weights in the 600 to 960 range, which means the body cannot get these molecules into the blood. It will go through the digestive system--good for the Colon---maybe. No my list of supplements is different. as to those in Zyflamend. Your right the items in this product has shown benefit for BHP, not Pca. Suggest Mega EFT and Flaxseed Oil capsules. Do not take to heart all that guff about omega 6. Flaxseed oil has Linoleic Acid--an Omega 6. So are we to now say all Omega 6 compounds are to be avoided. Are Flaxseed to be avoided. I Think not! Linoleic acid has some nice health benefits.

    I take and answer questions as I can. But using Vitacost.com--for 99% of your supplemental needs--is great one stop shopping at the lowest price. They take returns no questions asked, by just shipping something new or a replacement free. And I am not a stockholder--when you find something really good you share it. It might be on the site Team Aspire--that I have actually laid out my supplemental approach--Team Aspire is another site like HealthUnlocked. Anyway I think I have answered your questions for today.


  • 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.

  • Well, Mr. Detective, I do not know about your mushrooms, but in My copy of Prescription for Nutritional Healing--there are recommendations for the Immune System. There are 30 Supplements, 15 Herbs, 10 Recommendations, and many Considerations, from page 774-779. I.E. The Herb Astragalus-- boosts the Immune system and generates anticancer cells in the body. It is also a powerful antioxidant and protects the liver from toxins. This is in alphabetical order--and the first Herb addressed. The first Supplement in Alphabetical order is Acetyl-L-carnitine[Which I take Daily]. This supplement is described as an energy carrier, metabolic facilitator, and cell membrane protector. Dr. Abrams, from 10 years ago, and his Mushroom, may only be a spec in the wind as to, what is enclosed in the 6 pages of Nutrition Healing, as to Immunity Health.

    You have the right Author and Book. As to Flax. I am not a fan of Weil--as he is too much in the woods for me. He is an old 1969 Organic proponent, when technology was ancient. There are new extraction techniques--some I was involved in--in my career, where by the use of sub-critical and super critical CO2 extraction, which can be done to natural substances, not harming any key nutrients. So I go with the capsules. It takes pounds of Flax Seeds to make 180 capsules of the concentrated oil. So you can take a handful of seeds and I will take 3 capsules.

    AS to nuts/seeds don't forget about Brazil Nuts, there is Selenium in a particular form not available as a supplement that is a major Free Radical Scavenger, and will go after Pca cells and shut down certain variants.

    I think you will find Vitacost wins hands down. I think we are finished for tonight.


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

  • Us older people have to use Sublingual B-12 to get full absorbability, Melatonin works same way--been using for 10 years.


  • 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

  • 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

  • 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 ..

  • 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, 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

  • 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♡

  • 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.


  • 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 ♡

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

  • 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.


  • 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.


  • 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.

  • Hi Joe!

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


  • 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.

  • 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

  • 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 ;)

  • 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?

  • 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.

  • 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.

  • 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!

  • 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 :)

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