Elgie/Memorial Sloan-Kettering/Radiotherapy /Xtandi Side Effects

[erjlg3]

Hi Everyone

We went to Memorial Sloan-Kettering in Basking Ridge New Jersey on Thursday for a consultation for possible radiation to the humeral head of his shoulder. This was a mutual decision to seek Salvage Radiotherapy . The radiation oncologist does not think he needs to have any radiation. She said it looks like this area has already been treated and even possibly the area is deteriorating from the treatment and that it is possibly only that. She is waiting on previous scans to compare and also have their medical oncologist review and we will go back to see the medical oncologist in 2 weeks. That will give us another set of fresh eyes and hopefully another good Doctor to choose from. She wants him to have a regular pet scan because she said sometimes an F-18 picks up things that aren't there. Not verbatim she said they treat prostate cancer there at Memorial Sloan-Kettering very aggressively which is something we appreciate. She also took lots of blood work while we were there. On the other end, LG is still having insomnia. He is in a fog or a haze and he said that he feels like he's crawling out of his skin since starting the 3rd pill Xtandi. Dr. Myers did not feel that Xtandi causes insomnia.... although I have heard otherwise from others and on our site. He had LG stop taking the medication to see if it was it and we did the experimenting and it showed that it was the Xtandi causing the insomnia and the fogginess or the lack of sleep. LG is back on it and back to all of the bad side effects. So we put a call back into Dr. Myers and an email letting him know that lg is still in a bad state and asking for some kind of sleep medication but the weekend is here now and we have not heard back so I'm guessing we will hear back on Monday or Tuesday. LG is trying to continue the treatment for fear the cancer will be growing but in the state that he is in I'm not sure how much longer he will be able to do this. We will also be talking with the new medical oncologist at Memorial Sloan-Kettering in 2 weeks. It has been very difficult watching the steady decline of Elgie not knowing what to do or how to help with him not wanting to stop this treatment. Will the side effects lesson ? Will they become tolerable or more tolerable ? Thank you all so very much and I'm sorry it took 2 days to fill you in. Life has been completely hectic. Our most sincere good wishes for each and everyone of you.

Most sincere,

Jackie

[Dan59]

I had similar thing when Oncologist wanted to radiate some tumors long ago , radiation oncologist did not want to upset qol so we did nothing and really nothing happened. I also know at times I have pain from my humeral head and then it goes away been gone now for a while, I am thinking mine may be artheritis/ degenerative bone disease from early life where I was quite reckless. I wish you both the best, I am feeling much better now 2 weeks after Surgery, and will likely do chemo when by body is strong enough, trying to get up every day and stay somewhat active.

Dan

[erjlg3 in reply to Dan59]

That is quite interesting Dan about not radiating and nothing happened anyway! Such a blessing. Fortunately Elgie has no pain they're. I'm sorry you do but hope it is manageable. I'm so glad you're feeling much better this soon after surgery. I am so sorry that chemo has to come. Rest and heal. Thank you for your personal health input.

Jackie

[CERICWIN]

Hi Jackie,

I've known of guys who couldn't tolerate Xtandi for two weeks or two months, and yet I've also known of guys who tolerated it for five years.

All I can say that is in my own case, I thought at first that it was almost going to kill me, and my medonc (medical oncologist) suggested lowering the dosage. I requested to remain on the full 160 (4 caps) dose, as I wanted to give my body a chance to adjust to such a powerful medication. I don't really know if the side effects really diminished, or if I just managed to tolerate them better, but I remained on the full dosage for about a year and a half, and then the side effects became more than I could tolerate.

So we reduced the Xtandi dosage, and still no reduction in side effects, so she took me off of it for just a week's vacation. But even three caps per day were difficult, so we went down to 2 per day, the minimal dose, and while it was more comfortable, it allowed my original tumor to regrow, and it required twenty radiation treatments to reduce the size of the cancerous prostate from th size of an apple back down to almost normal. I went back on three caps per day until August 31, when I stopped treatment and was already in hospice for six days.

The thing is; you must be your own advocate with the doctors. If Elgie cannot tolerate the Xtandi, then it should be stopped and another medication tried, possibly Zytiga might work; I'm not giving medical advice, but providing information. I'm not a doctor, I can only write from my own personal experience.

I had exreme fatigue on Xtandi and insomnia, nausea, loss of appetite, and more. But each of us is different. Just because I managed to get about 25 months out of Xtandi doesn't mean that others will get the same benefit, and some will even get more time from it. I didn't have much memory loss until fairly recently, or cognitive difficulties, and previously blamed the Lupron and Firmagon for those issues.

But I did reach my limit for the tolerance, even if it took a long time, and since there are new lymph gland metastases and a slight increase in the bone mets, it's obvious that the cancer had adapted to the Xtandi. But being on it for so long weakened me to the point where I couldn't have other treatments, and even my oncologist said that she could see that I was suffering, although I tried to conceal the worst from her. (I should have been more honest with her, and not tried to minimize the effects on me)

My heart goes out to you and Elgie, and I hope that he will be feeling better soon,

Eric

[erjlg3 in reply to CERICWIN]

Hi Eric!

We're so thankful for this personal information that you have shared. It is more helpful than you can possibly imagine. It really helps to get inside of what you were feeling, what you were thinking, how your body was feeling and how it was reacting in order for me to understand in order for Elgie to understand in order for us to be able to come together and figure out a plan or a thought as to what we can think about doing. You have been through so much in such a short amount of time and no one should have to go through such trauma. You're sharing is such valuable information us and I'm so sorry that you are having to suffer. Thank you Eric from our hearts.

Jackie

[CERICWIN in reply to erjlg3]

I'm no expert about prostate cancer in general, the many different treatments, but I do know a lot about the ones that I was on for extended periods. Not very many guys have been on Xtandi longer than myself, and I just managed to tolerate the side effects for a long time.

All prostate cancer treatments have side effects; they're powerful drugs that affect the whole body.

And while a lot of guys have been in treatment far longer than me, I have indeed packed a lot of experience into four very short years.

And Jackie, you've become a dear friend over the past couple of years, I hate to think of you and Elgie going through these difficulties.

God bless you both,

Eric

[erjlg3 in reply to CERICWIN]

Thank you Eric. I feel the same. You are my dear friend who is hurting and it hurts my heart.

[bhammel]

As always you two are highest in my thoughts and prayers. Hang on.

[erjlg3 in reply to bhammel]

As you are in mine too bhammel! Thank you so much.

[Cancer09]

Xtandi was the worst drug my husband took. .side effects were the worst ..Zytiga was great ..felt good but the psa rose ..as mentioned before he has run the course ..casodex .taxotere.jevtana.taxotere repeated and now on xofigo ...pain is managed .we just don't know what may be tried next ..we also ran the foundation one ..like everyone else we keep up the hope ..multiple radiation along the way too..for pain and tumors ..

[erjlg3 in reply to Cancer09]

I'm so sorry. I hope and pray for something to help your husband. Truly.

[Bluebird11]

Jackie, Thank you always for your wonderful heartfelt words. You always bring such a smile into this forum, no matter what you are going through.

There are some things in your posts, I'd like to ask about.

First, I am glad you realized the drugs caused the insomnia and side effects. Not sure why docs seem to not realize the 'whole body' effects.

A question about prior treatment to Lg's shoulder area. Did he have radiation there? And, can that radiated place deteriorate? What did she mean by that?

This is not spoken about.

In our case, there was no looking back to spot radiation- the pain made that decision, so we are fortunate that we didn't have to second guess.

Also, your comment about the F-18 showing things that aren't there. Is it that they don't know 'what' is showing up, not that it is actually placing something in the scan that doesn't exist?

We know for certain that scans don't tell exactly what is there. We've been round that bend a number of times.

I'd love to hear about arthritic conditions showing up as mets. We did experience this.

So, what's the answer if doctors can't, or won't say, exactly how much room there is for 'not knowing'...

We were told recently, the only way is through a biopsy of the area and even then one can have a false positive.

The gift is then we must cultivate more awareness of our own body and answers.

My wish is for you to find your answers. If no pain, that's a gift!!! and, sometimes doing less is more. I have no advice, we are all so different, yet, our sharing brings so much to all of us.

It sounds like you are in one of those periods where there is not much vacation from decisions- I hope you get a smooth road again.

genie

[erjlg3 in reply to Bluebird11]

Your words are always so kind to me Genie. Thank you so much.

LG did not have radiation to the shoulder area. He has had Xofigo radium-223 when he was at dattoli for his other five spots. I can't remember all of those spots but it was nowhere near the shoulder. What we took from that about the shoulder looking like it had already been radiated was that the triple blockade could have possibly deteriorated that area since all of these treatments affect your bones. Now that does not mean that that is exactly what she meant but that is what we understood her to mean. She said it looked as if it had already been treated. You have wonderful questions that I don't know the exact answers to but I can tell you that I believe if it's been radiated it can deteriorate because after each radiation experience LG needed a hip replacement each time.

Also our interpretation of the F-18 remark that she made.... now I could be wrong but our interpretation was that maybe it is picking up arthritic changes. Now sweet Genie..... none of this I do understand..... I try so hard to understand but fail a lot of the times. I'm always wishing, hoping and praying that each doctor is doing the best that they are able to do and then some and that when I let all of you know... that we will be guided with all of your personal knowledge, guidance and expertise. As you can already see that has worked for us thus far we have been truly blessed with such wonderful people to guide us along this path. I wish I could take each of you to each doctor appointment with us Boy what a team we would have!!!!

We have no definitive answers Genie

I received an email back from Dr. Myers and he said that Elgie is not able to take sleep medicines due to the oxycodone and the Cymbalta. I myself see nothing left to do except go back to the casodex. The radiation oncologist at Memorial Sloan-Kettering said that that was an option for LG but we are waiting for an answer from dr. Myers.

They tried to biopsy the area and LG shoulder but they said they possibly missed the area and that is why nothing showed up. I guess that is the only way to get genome sequencing is to hit the spot. Once again I don't have a lot of knowledge in that area and I'm not really sure if this is correct.

I love your words being aware of our own bodies. Yes yes yes....no pain is such a gift

We do have a lot of deciding to do in the next 2 weeks. LG is staying on the Xtandi until we talked with dr. Myers and consult with the medical oncologist at Memorial Sloan-Kettering or until he says uncle whatever his decision I that less is definitely more and then he will have continued good health.

I always love your posts.... as you make me think more LOL. It gives me nice questions to ask at the next doctor visit. Always wishing hoping and praying for you and your hubby. If I have missed anything please let me know

Big hugs Genie.

Jackie

[Charlean]

Jackie, Sorry to hear that the Xtandi is giving him such a hard time but it doesn't surprise me to hear it. Harley just couldn't bear the side effects and for him there were even more...and decided they were not worth what little they could do for him. Sometimes we have to really take a long hard look at quality of life, even when its scary. He did it for 3 months before he stopped so can't say if it would have lessened but guessing not. I know how hard it is to say I am stopping this drug. I worried when he did that too but I also watched him suffering with so many side effects that I was frankly glad he stopped it. My prayers are with you both and I hope the Dr can come up with something better if he does have to stop the drug.

[erjlg3 in reply to Charlean]

Dearest Charlean,

How are you precious person? Oh how you must miss Harley My heart aches at that thought. One does not know that pain of watching your loved one steadily decline until one has lived it. Elgie and I talk about it and this medication side effects will not work. He gets nauseated and sick every day along with the brain issues and insomnia. This is no quality of life. We've decided he will back down to 2 Xtandi tomorrow and see if he feels any better there and if not then down to 1. Thank you so much for your thoughts and input....I value all of yours and everyone's replies.

Sending a virtual huge hug Charlean.

Jackie

[Cancersucks]

Ex had a bad time with Xtandi too. ONC doesn't know which, Xtandi or Zytiga, gave him bleeding ulcers, but these are causing him pain and vomiting, made worse by radiation.

[erjlg3 in reply to Cancersucks]

Oh your poor XMan....I wish he were an XMan with super powers. I just can't imagine how one absorbs or deals with his anguish

Has he tried Carafate? I don't know how well it works for something like this I just know that it seals the cracks in the tummy for me. They also gave it to elgie when he was having his radiation to protect something in there. Alot of pills a day. I just had to mention it just in case it might help.

I keep everyone here in my thoughts and my prayers more than you could possibly know saying an extra prayer for hubby x hubby.

So sincere,

Jackie