We arrived home from our visit to dr. Myers yesterday and we saw dr. Myers yesterday. He said that he feels LG's cancer is in the shoulder but he is not a hundred percent. He says that if it is....then the casodex is not working so he changed him to Xtandi. Wondering what we should expect from Xtandi. He will start him out on two pills and hopefully work him up to 4 which makes me wonder about the side effects if he can get to 4. He started him on a high dose of iron and vitamin C because his iron or something related to his iron is very low and he says it should help with the weakness and shortness of breath. He doesn't understand how the doctors did not see that. He also is giving him a blood test that will help him to see if there are cancer cells in his blood. None of this is verbatim. It's so hard to remember everything said but I'm sure it is similar. He's also giving him other blood test to try and keep track of the cancer since he has a non cancer-producing PSA. He said his last F-18 pet scan and the previous one have not changed at all and that is a great thing. The only thing changed was the shoulder the left humoral.
He says the iron and vitamin C may not make a difference until at least 4 or 5 weeks. We were very pleased with this visit. Very thankful to dr. Myers for going out of the box and not just watching what could possibly be the cancer growing and just waiting for scans to see if it is growing as our local oncologist is doing. Thankful to all of you and for any input. I have not been very active here as my life has become quite overwhelming. Off topic...... I am worried about a recent scan of mine showing 5 lesions in my lungs and two that have grown. One doctor just wants to watch them grow more and I go to my sarcoidosis doctor tomorrow to see what he thinks because everyone was not sure what the lesions are. My best to wishes and healing prayers for everyone. More off topic. ... everytime we go to dr. Myers we go to Safari Park in Virginia. It lightens the mood a lot. Here is a photo of oh so much fun. Most sincere, Jackie
Charles Eric Winter
Chuck Maack
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I don't have adequate time right now to respond to your post, but will do so later today or this evening. I'm getting ready for two appointments, which will take up my whole afternoon----with my medonc and my psychologist and also another blood draw for the usual monthly tests---so it's a triple today, and I need to take some extra things with me, since I may be hospitalized at any time. The additional symptoms I'm having don't jibe with the lower PSA and blood tests.
I'll write you more about the Xtandi effects that I have---I've been on it for just about a full two years now.
I'm so concerned about your spots in the lungs, and Elgie's having to go on Xtandi.
As far as the Xtandi goes, it's very powerful, and the side effects at first can be very difficult for a lot of guys. I've been on it for a full two years, and managed to tolerate the maximum dosage for more than a year, but finally the side effects became too intolerable, and we reduced the dosage, first to 3/4 (3 caps per day or 120 mg) and even stopped it for a week.
When the Xtandi was reduced to the minimum 80 mg, my prostate had a "growth spurt," and I had to have twenty radiation treatments to alleviate the intense pain---my prostate tumor had grown again to about the size of an apple. After the radiation, I went back up to 120 mg, and remain at that dosage. My PSA is at the lowest point in more than a year, at 2.79. As you know, I also underwent an orchiectomy in November to try to bring the testosterone level down.
But now I'm having increased symptoms and side effects, so I have a full body bone scan scheduled with CT scans on August 2.
Xtandi can be quite difficult when first started, and sometimes the body needs time to adjust to the high dosage. Side effects are similar to Lupron or Firmagon, with hot flashes, pains and aches, loss of appetite, dizziness, diarrhea, insomnia, fatigue, and more. In my case, the side effects diminished after a couple of months, but remained rather severe.
Tonight I'm exhausted---the weather here is hot, and my appointment with my medical oncologist was cancelled, but at least I got to meet with my psychologist at the cancer center.
Jackie, you and Elgie are in my prayers always, and my thoughts,
Oh Eric.....my heart breaks for all that you have been through and all you go through.....doing it all alone most of the time. I don't think I'd have the awesome fight that you have continued to show us. I am so proud of the courage you have had. I did not remember that you were on Xtandi. You have been through so much on this medication. I think you've had almost every side effect. That makes me sad for you. I'm so sorry that you are having so many health issues as of late. So many appointments in one day is so hard on one so tired. I hope you are resting and this does not wake you. I am scared for all of you and Elgie
I went to Hopkins today and the sarcoidosis doctor says that I have more lesions in the lungs of sarcoidosis. Two of them have grown but he says he does not think they are cancer he sounded quite confident. He said that the low dose of prednisone and then I am one is not keeping the inflammation down. He raised my prednisone and in 4 months I will go back and have testing pulmonary function test, CT scan and have a bone density scan now and later due to the prednisone. Testing shows I also have the beginning of neuropathy which doesn't feel so good. Elgies still not feeling so well. I'm worried about him starting the Xtandi.
Peace love hugs and my prayers dear Eric. Most sincere.
Please don't worry about me; you have so many things going on with yourself and Elgie. I am having a difficult time right now, but I'm in the best of hands, my medical team is doing everything possible to make me as comfortable as possible.
It's very puzzling, though, to my doctors and myself that the last lab tests were so good, and yet the increase in symptoms and the way that I feel are totally opposite from the tests. I anxiously await the new scans ordered for August 2, to see exactly what's going on inside of my body.
My heart goes out to both you and Elgie. Having been on Xtandi for exactly two years, I know how difficult it is when it is at first---the side effects can be very difficult. I still have the side effects, but I'll tolerate them as long as the Xtandi keeps my cancer under control.
You and Elgie are always in my thoughts and prayers,
I'm always going to worry and care about you Eric. Please keep me posted and continue to take the best care that you can of you. I hope Ray is back to his normal schedule. Big gentle hus Eric.
Jackie, I have been on full dose of xtandi for more than 2 years, It makes me tired sometimes , I take it just before bed and sleep a full 8 to 10 hrs. I have had spots on my lungs for years , how big are they ? Have you had other scans, and they were not there, sometimes they are seeing a benign unrelated event, only way to know for sure is to be rescanned in 6 mos or so, or I suppose to have a biopsy. My largest one from 10 years ago at my original scan turned out to be a unrelated benign event, they continue to see it but it does not grow, and may just be a fold
Hi Dan59! Wow... I can't say I'm glad to hear that that would sound horrible but I'm glad to know that one can live like that. The doc says it's the sarcoidosis lesions. I know two of them have increased from 4 millimeters to 5 millimeters and I have 3 more with a total of 5. My breathing has been a little affected lately due to this but he says the increase in prednisone should help. I have had two other scans and we will do another scan in 4 months. I am so glad to hear that you have not had many side effects with the Xtandi. It's horrible enough having to take the medication and to have the PC. Thank you so much for your response
Jackie, Xtandi does not bother me and I have been on it for at least 2 years, It may be longer if I check the records. Now that I am retired I sleep a few more hours and the xtandi fatigue does not bother me. When we are talking a millimeter we are talking small, so to increase my 1 mm is ever so small of an increase I have some they measure in centimeters, and they have been that big for years, I realize I am very fortunate to be a great responder.
Jackie , best to you and Elgie, I forgot to say what I was thinking, it is often useful especially when going to a Dr Like Dr Myers , which is a big event but also any Dr , have a recorder, and push play the moment he walks in the room, also important is to take notes that can be followed, but minimum is the recorder , because often it is so hard to remember just what they say.
Hahaha you know what I forgot that you had written this when I replied to your last message. Guess what I did today before I even read your message I found this voice recorder on my phone and got the bright idea to cover it with a tissue and turn it on when I went in. It was so very helpful because when I got home I was able to listen to it and let LG listen also. Thank you so much for helping me to feel confident for doing that
Jackie, Most oncologist I have ever been to in the early days, I asked if I could record and they were fine with it. Anymore the person that goes with sits with a pad and writes notes on questions we ask
Hi, Jackie, my job on the dr. visits is to sit quietly taking notes the whole time, occasionally asking for a repeat of something for accuracy or spelling. Rarely will the dr. ask me a question. You definitely got scrambled in your post: " he has a non cancer-producing PSA" probably should be "he has a non-PSA producing cancer."
The other blood test is looking for CTC, circulating tumor cells. Dr. Meyers may have ordered a special type of this to look for a different biological marker than PSA for either monitoring purposes or for determining the next mode of attack.
If he has a cancer that is producing it's own PSA, Extandi may help. But Extandi and Zytiga don't work on every type of prostate cancer. You should know after a month if it will work. It worked for three years for my husband. Has Elgie had Zytiga?
I know everyone says "Take care of yourself, too." It is so hard to do, especially if you are trying to hold down a job as well and have children with needs. That may not be your case, it is mine. Music is my outlet. I hope you have found yours, if only a quiet place to cry or pray.
GAdrummer.... you are absolutely correct...I get that mixed up and I thank you so very much for correcting me as I do not want to mislead anyone.
Too cute that you sit there taking notes the whole time. I absolutely should be doing that or pushing the recorder button on my phone. Really never had a need for that before or didn't think I did.
LG has not been on Zytiga. I think right now he is on Trelstar, casodex, finasteride and Xgeva for bone health.
I do not know how they will know in a month if the Xtandi is helping. Maybe through one of those blood test. Thank you so very much for the information one possibly what the blood test is that he is having it was very helpful to us as we could not remember.
I thoroughly admire anyone who can juggle all of that with children and a career. We are having a hard time juggling without all of that.
My music is 5 kitties, a little Pekingese Miniature Pinscher and nature
My very best wishes for you and your family too. Hugs.
I have been a little concerned because you have not been posting. Sorry about your personal distractions. Don't let Elgie distract you from taking proper care of yourself.
Probably, the blood test that Dr. Meyers is going to have run to see if "there is cancer in the blood" is an ARV-7 test that finds what are call circulating tumor cells. It actually looks for a genetic marker and has been developed at Johns Hopkins. It is also a good test to evaluate drug resistance. It is only recently becoming commercially available.
Always so great to see your smiling face Thank you so much for your kind words and I am back to taking care of me a little more. I was feeling so good until I got worn out and can't keep up
We are so blessed to have each of you and our corner and we really know that. Thank you so much for that information about the arv - 7 it is so helpful in helping us to understand what is going on since we can't remember the names We are really blessed to have this test commercially available now!
I so much wish and Hope that you are doing really well.
The test is still considered experimental, but yes there are men using it. Someone posted earlier that the test is now also available though the Foundation as well as JH.
Very experienced oncologists feel that they can get similar information by monitoring PSA and disease progression to know when a treatment is failing, but if it can be quantified to confirm clinical observation, or vice a versa, it seems to me like a darn good idea.
My hubby was on Xtandi ..it did him in ..I'm amazed these other guys could tolerate it so long ...he was taken off that also because his psa rose again ..Larry had shoulder pain too ..tumor was in his clavicle ..fx his bone followed by radiation ...take care of yourself ...I need too also so I can care for Larry ...but we are out of state and trying to get back home where my docs are ...we are awaiting approval of our last option xofigo ...he has done casodex taxotere twice Zytiga Xtandi jevtana ...good luck to all ....everyday is a gift
I felt your pain instantly. I'm so sorry for you and for Larry. I hope you get back home soon to care for you also. Yes every day is definitely a gift. Thank you. Hugs,
I just saw that you wrote to me asking about Larry .Larry died oct 26 th ..I usually don't go to this site anymore .it is too painful .larry fought hard but the cancer won .no one can prepare you for this loss .we had 45 wonderful years together ..but till death do us part .was Not long enough.
So sorry. Every time we lose someone it hurts like a knife in the gut. Please know that we are all thinking of you. I hope that over time the good memories will be all that you think of.
Hi just wondering how things are with Larry now. My dad currently in very similar situation. On xtandi 10 wks psa remains at 50. He's exhausted, sleep all over the place and shoulder pain. Not sure if pain from cancer or xtandi. Meeting consultant next week so hope to query this treatment more. Any advice most welcome.
I would like to share my husbands experience with Xtandi, not to scare you, but to simply let you how it affected him. My husband definitely had the extreme fatigue and explosive diarrhea, weakness and joint pain the entire time he took the drug. He also had trouble breathing and chest pain and the Dr felt it was related to this drug. He stayed on the drug for almost three months, and although the PSA dropped the first two months by a small amount,( it began to rise the third month)he determined that the side effects of this drug were not worth however many months it might work or add to his life. He just couldn't enjoy life at all while on this drug and he feels strongly that quality is much more important. Although these drugs don't give all people the same side effects, my husband was one of those unfortunate fellows that usually had all of the worst side effects for the drugs they give for this disease. I felt this was his decision to make and I respected his choice to stop the drug. Once he stopped it, the chest pain subsided and the breathing problems seemed to go away as well but he remained very weak and tired but that may be partly due to the Lupron.
I think you should know fairly quickly how your body will react to this drug. Sadly, Harley seemed to always get the worse side effects and the worst problems, including the spinal cord compression paralysis. I am sure that many others don't have the problems so I hope your husband is one of the lucky ones. Also, I pray that your medical situation isn't too serious. You have enough to deal with.
Thank you so much Charlean. I wish it would have helped Harley and not given him so many bad side effects. My heart is with both of you and all that you're going through. Thank you for your kind words.
Just wanted to reply with a more positive response to Xtandi. I have been on Xtandi for two and a half months and my PSA has dropped from 197.6 to 124.1, and I am tolerating it well. I continue my Lupron injections which I started over ten years ago. I feel some tiredness and weakness and hot flashes seem to be recurring, but it is hard to separate whether complaints are being caused by Xtandi or just aging, I turned 78 last month. Also, it has been an inrecredably hot summer here in Oklahoma and no on seems to have much energy.
Davisjl.... that is absolutely great to have another opinion that some people can tolerate it and I guess others cannot so I guess it's a crapshoot 50/50 chance. The medication has not arrived yet. I'm so glad that you are doing well on it. Thank you so much for your input. My best wishes to you. Most sincere, Jackie
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Great attitude 
but I'm glad to know that one can live like that. The doc says it's the sarcoidosis lesions. I know two of them have increased from 4 millimeters to 5 millimeters and I have 3 more with a total of 5. My breathing has been a little affected lately due to this but he says the increase in prednisone should help. I have had two other scans and we will do another scan in 4 months. I am so glad to hear that you have not had many side effects with the Xtandi. It's horrible enough having to take the medication and to have the PC. Thank you so much for your response 
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