Xtandi rough journy

Wow Xtandi is kicking my butt, It has a side effect of tearing down the muscular skeletal system of the body, for instance I have now developed a condition called costochondritis this is a strain of the ligaments in my chest, it has now been three weeks of severe pain in my chest, and just a great feeling of weakness, sometimes I had trouble just standing up from a chair, my legs would not move, I ma not having success with Xtandi, the side effects are terrible and on top of that my PSA has just doubled in 30 days from 22 to 45, wow, I am now terrified, I have got to retire from the work force, and consider end of life preparations, because I know the next step is

intravenous chemo, I hear the side effects from chemo are worse,

oh and the pain killers they give me make me nauseas, I am in a world of hurt.

thanks for listening, try to enjoy each day one at a time.

I will keep fighting,

thanks

jack bishop

36 Replies

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  • Jack...do you have a good oncologist that spec in PCa...have you tried zytiga ....normally with a PSA of 45 you are far from the end of the line....a lot of guys can not tolerate Xtandi and there are other options

    Gus

  • yes thank you sir, I have already had my run with zytiga it worked for almost two years, then it stopped working, I was then told that xtandi was the last "good" drug to use before we hit intravenous chemo, so I don't know, I have a doctor appointment on Tuesday , ill see what he says but man I just cant tolerate anymore xtandi, that is a real rough drug wooa whew!

    peace to you

    jack

  • You know that they give chemo to newbies now, right?

  • Success, never give up.

  • Did you try medical mariuana?

  • cant do that I'm in a 12 step program, (but what the hell if I'm dying)

  • Hell is when trump wins🤐

  • I feel for you Jack. I have been on Lupron for 15 months now. Every now and then, I feel pain somewhere. I get paranoid that I'm getting metastasis in those areas. I also get chest pains every now and then. I do think that may be due to the weakening of muscles and my heart has to work harder. I do my best to find out the source. I just had a chest scan and is due for nuclear stress test.

    Frankly, I don't know how metastatic feels on the bone or tissues with nerve endings. My metastasis is in the lymph nodes. Is it a constant pain or intermittent (and if so what would trigger the pain). Is it easy to mistake one type of pain for another? I pray I don't reach that part of the journey that many of our brothers here do.

    Nonetheless, Jack someone has asked whether you have an onc specializing on PCa. This is a critical part of your treatment if you don't have one. We are way past in the stage of our disease to be in the care of a urologist.

    We know many of our brothers here have live happy days getting past the stage of where you are today. I'm certain that under a proper care, you'll be too.

    Take care and wish you the enjoyment of what life has to offer.

  • My health care provider is Kaiser, and HMO, I have to use doctors within their network/Hospital, they are all trained the same and follow the same Kaiser rules, they are all little "Kaiser clones" yes I do have a Oncologist, he seems like he knows what he is doing but from what I read on the internet all of his treatments are standard "cookie cutter " treatments all the standard drugs and therapies , so what can I do?

  • Jack--there are other options---Suggest if you are on Medicare---to get a Genome test---Gene Mapping---from Foundation One, would be free, with Medicare. Some insurance companies, pays some part--I do not know how long it takes--I am waiting for my results now. This will define your Gene Mutations, which then tells your Docs. which drugs will work or not work--this comes from a library of retained results of many hundreds of men. This is also the gateway to Clinical trials, [Clinical Drugs.Gov]. Clinical trials today are mostly being done in the area of Immunology, or Virus drugs, and the clinicians want to know your Gene Mapping to see if you qualify for their particular test. I.E the report will tell you if you would do well on Zytiga, or for any drug that may be in test. It will define whether Xtandi will work for you, or not. If it will, then it is your choice how to live with it, or not. If the test says it will not work for you--then it is obvious, what to do.

    What a lot of people do not know: Certain States have [right to use laws]---that if a drug has been identified as a possible benefactor, for you--even though it is in test and not yet FDA approved---you have a right to be treated by that drug---if you live in a Right To Use State. I live in North Carolina--and it is a Right to Use State. Florida is another one I know. As others here stated---make sure you have a very good Oncologist--if you have to travel to get to one--then you have to do it. Fighting sometimes means getting out of the ring--and warring where you have to.

    Anyway I bring these things up as there are options, and your not on the final journey yet. God be with you.

    Nalakrats

  • Wow, that is a lot to deal with. I am on Xtandi plus a mystery drug on an Eli Lilly trail. The side affects are few, nothing like you describe. Did you doctor consider a steroid to at lease bring you back to normal? Don't give up, there are other drugs out there.

  • Jack everyone's different and you may not have a huge problem with intravenous drugs. My reaction was mild to moderate. My nausea and pain were controlled by CBD. I started with 50 mg and worked up to 75 mg before I got good relief from the chemo sickness. I still use it for pain breakthrough. Don't give up yet you still have a long way to go before you pack it in. Read Cericwin's post. He hasn't given up how can you?.

    Dennis

  • Jack, It is rare for guys who fail Zytiga to then go on to respond well to Xtandi, and vice versa. I tell you this not to deflate hopes, but to spare you the apparent debilitating side effects you are experiencing with Xtandi. As Nalakrats mentioned, your best option is probably to have your genes sequenced to see if you have any actionable mutations for which there are effective drugs in development, such as olaparib (Lynparza) for BRCA mutations.

    Best wishes for success!

  • good point. And Johns Hopkins has a test for the ARV7 variant, which if you have, means that Xtandi will work less well, and (I assume) that more you have the less well it will work. Heard at the 2016 PCRI LAX Marriott Conference.

  • Why do they not test everyone before taking Xtandi for this ARV7 to see if it will work?

  • I think because they do not know or because they are dumb.

    My doctor said (only yesterday) that the test is not "approved".

    I was stunned by his lack of interest.

    It is true that New York does not allow its doctors to write a prescription for this test, nor for a few other similar things (like Color Genomics testing). But this is Johns Hopkins. geesh.

    paact.help/ar-v7-blood-test...

  • I wonder if you could get the blood test if you are already on Xtandi?

    Thank you so much.

    Jackie

  • Of course. There are contact numbers in the link. If insurance does not cover it, the cost is $1000. But possibly other arrangements can be made in certain circumstances. They no doubt have other interests besides cash at this point, early on.

  • Thanks so much!

  • patandemma@Mrjack

    costochondritis is NOT strained ligaments. It is an inflammation of diverse causes of the CARTILAGE connecting the end of the rib to the breast bone. Costochondritis is,in my experience as a physician,the most overused B.S. diagnosis for chest pain that the doctor hasn't been able to explain. Doesn't kill anyone if that is the correct diagnosis BUT in the setting of serious PCa,better make sure it's not a rib metastasis

  • what if it is rib/bone metastasis? what can I do ?, other than pain meds!

  • Like any bone met. Silly.

    Radiation (R223/cyberknife) or hormone, or immune or chemo or surgery.

  • yes you are right my doctor and I now agree that my chest pain is bone mets, w are going to do another set of scans and get a better look at what we have

    I will start chemo with taxotel in two weeks, and Genome mapping is not available to me, per my doctor, so the bumpy ride continues, I just pray that the pain does not get worse, you know it came on rather suddenly, it surprised me how fast I went from no pain to extreme pain almost overnight.

    I am currently treating it with your typical pain meds, I would be interested to know what I can expect as far as worsening of the pain and effected areas and also other ways of treating bone pain other than heavy duty pain meds ecck!

  • patandemma@Mrjack

    you wrote "other ways of treating bone pain other than heavy duty pain meds ecck!"

    As I said earlier radiotherapy is quickest and mpst effective and least mprbid-IMRT,SBRT,proton beam

    Slower is radium-223,,chemo.Again if you want to read about radiotherapy for bone pain,see the link below

    healthunlocked.com/api/redi...

    heavy duty pain meds only a temporising measure while these other measures are evaluated/chosen

    (0)

    "

  • thank you

  • Hi Jack,

    I'm so sorry you're going through this on this medication it sounds like youre side effects are worse than my husband's. I am absolutely terrified of what this medicine can do but I am also terrified of what the cancer can do. It also makes me fearful for you and all who take it. We have been discussing stopping it and going back to casodex. We discussed this with the radiation oncologist and we will discuss it with medical oncologist in 2 weeks . Keep us posted if you will . My very best wishes to you.

    Most sincere,

    Jackie

  • So sorry to hear that the drug is so rough on you. Sounds like this drug does not work for you either. My husband suffered a great deal from both Zytiga and Xtandi and got little benefit from either. PSA also jumped like yours. One thing he did have however is the chest pain which did come from the metastasis in his spine and leg weakness and not just the drug so make sure they check you out. The spinal mets actually caused pain in his back shoulders, and chest as well as ribs because it was so severe that it eventually caused paralysis from the compression. It was called ridicular pain, jumping around and the Xtandi and Xofigo did nothing for it. I hope you are able to get through the chemo without too many side effects. It is difficult enough to endure the effects of the cancer without adding more from the treatment. I pray for each of you on this site every night. I wish you the best.

  • MrJack, Don't just reject chemotherapy out of hand. The side effects of chemo vary as much as the side effects of all of the other drugs we have available. Some of us have bad side effects while other don't have many chemo side effects. Go on to it, if it is not tolerable then simply stop it. You might do well and find that it is effective for you. The only way to know is by trying it.

    Also, find out your BRACA status, a Parp inhibitor might be a good choice.

    Joel

  • I don't want to be too obvious, but be sure to ask your docs about medications that might slow down or suppress these strong side effects. Your PSA sure doesn't sound like Xtandi is taking up the testosterone receptors to interfere w the cancer metastasis, but I am not a med doc .... keeping you in our thoughts ...... the end comes for all of us, no exceptions .....

  • patandemma@Mrjack

    What options if it's a rib metastasis?

    Radiation-IMRT or Proton Beam or Xofigo

    "Malignant bone pain: pathophysiology and treatment."

    ncbi.nlm.nih.gov/pubmed/906...

    W/R chemo,I finished 6 cycles of docetaxel 2months ago after diagnosis stage 4,Gleason 9

    First 4 cycles fine,the last two aged me 20 years BUT now I seem to be making suddenly very noticeable strides forward in strength and endurance. If I can recover from the effects at age 75 1/2 anybody younger should have a chance to tolerate if not severely debilitated prior.

    That's my experience but then again your mileage may vary

  • Yikes. Xtandi (aka enzalutimide) is a relative of bicalutimide. Have you had Bicalutimide?

    I did not find docetaxel to be a burden, and I assume that they could reduce the dose (I know they could, of course they could, and probably should) as a cautionary measure since you are debilitated (assuming you decide to give it a go.)

    I am surprised at the harsh symptoms that you are experiencing.

  • Doctor told us it is a 50 x's stronger relative of Casodex.

  • Yes, Xtandi (enzalutimide) is a relative of Casodex (bicalutimide), but I wonder what he is measuring as being 50 times as "strong". Could one alternately take 50 Casodex pills. (No.) It is not a very helpful comment except possibly in the broadest sense - that it works as well as Casodex against testosterone synthesis in the adrenals plus it has some additional functionalities, including acting against the transfer of Testosterone through the cell cytoplasm to the nucleus (by magic). See Wikipedia.

    Again, I did not find the chemo harsh, but I was as yet untreated.

  • I guess he is trying to speak in a language that I can understand or that we can understand. Saying the Xtandi is 50 times stronger the Casodex. I am thanking you for explaining it a little bit better even though it's not something I can quite grasp ;-)

    I am so much appreciating all of your posts lately. They are very interesting. Thank you so very much. Jackie

  • I saw my oncologist today, we are going to move on to the next drug treatment, chemo

    and the drug is taxotere, my psa is now 46, we will start the intravenous chemo in two weeks, wish me luck, I thank you all for your feedback and support.

    thank you all, God bless you, Best wishes in your journey!

  • I'm so glad you saw your doc and you stopped the Xtandi. I so much hope this works and you have NO side effects. Please keep us posted on your well being MrJack. Sending prayers, good wishes and healing thoughts your way. May God bless you!

    Jackie

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