Treatment: My husband Started Zytiga... - Advanced Prostate...

Advanced Prostate Cancer

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Fight11 profile image
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My husband Started Zytiga three weeks ago he had been on it for days when he developed a fever of 102.4. Went to er As I told many of you it ended up being salmonella. Had a recheck with the oncologist last Thursday he wanted him to restart the medication. I’ll be damned Thursday night he developed stomach cramping again and diarrhea so he never got to restart them not the medication for Friday morning. Call the on-call doctor on Saturday they wanted to see him back in the office and recheck him. They put him on Cipro to get the all the salmonella out of him they think he had a relapse. My concern is he’s castrate resistant as I had mentioned and he has not been on anything but Lupron which really isn’t doing a lot for him and now he’s three weeks out with no extra protection for the cancer. I know the doctor said they have to clear up his stomach first the salmonella. How dangerous is this that he hasn’t been on anything except for the Lupron which really isn’t doing its job. I’m petrified that this cancer is raging inside of him and he’s not on any other medication for the last three weeks.

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Fight11
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noahware profile image
noahware

I think the main concern would be if he had symptoms (from bone mets, etc.) that were causing discomfort. While prostate cancer might be said to be "raging" it does so in terms of months and years, not days.

I do understand, it is hard to be patient. I was content to do lifestyle changes only, for many months after diagnosis, and even after I discovered I had mets it was several more months before I decided on (and started) hormonal therapy. No regrets, yet, because I am aware that it took decades for my cancer to get where it is, and a few weeks here and there should not mean the end of the world, at least not until I am at that very late stage where the world IS about to end.

My wife feels otherwise, of course. For many men without symptoms (like me) I think this generally slow-moving disease is harder on the spouses than the men! But life has to be lived in the present, and if the present is spent entirely in anxiety about the future, we are short-changing ourselves.

Fight11 profile image
Fight11 in reply to noahware

Are you castrate resistant

noahware profile image
noahware in reply to Fight11

No, I'm early on in treatment. But realize, becoming CR does not in itself mean the acceleration of metastases such that we need to suddenly be concerned about being off treatment for a matter of days or weeks.

My plan going forward, in fact, is to try to DELAY becoming CR by going off treatment for a period of time. Could my cancer then progress, if I am off treatment for months or years? Of course! I expect it will. But I don't expect it to kill me right there and then. I will move on to another treatment that may hopefully provide a somewhat durable remission,

You should be aware that MANY men take "vacations" from treatment, of many months, for a variety of reasons, and that there is no overwhelming evidence that this necessarily shortens survival for most of them (although it probably does for some.)

While I do fear the eventual onset of pain, and death, I do not fear cancer itself. It is just a part of me that, being asymptomatic, I perceive more as an abstract concept than a concrete reality. I am FAR more afraid of (me or a family member) being in an automobile accident, which could happen at any time and that I have zero control over. But I can't let THAT fear dominate my thoughts, even if it might pop into my head now and then.

I am not suggesting that you shouldn't be concerned for your husband, because it would be weird if you WERE NOT. But, frankly, his having salmonella seems to me like a bigger concern than his being off PC meds for a few weeks. I think the very word "cancer" instills a universal fear that can sometimes grow out of proportion when considering all that is related to the cancer.

So a deep concern, with this bit of time without meds, is probably a reflection of your overall worry. Its perfectly understandable, but so far as a few more days before resuming treatment, I think you can take a deep breath and relax. (Or at least, try to downgrade from being "petrified," because that probably isn't great for either you or your hubby!)

Stevana profile image
Stevana in reply to noahware

I chose Firmagon for ADT treatment. Was dx’d in March stage 4 with multiple mets. Just started docetaxel with immunotherapy drug nivolumab. I asked my MO about intermittent ADT once I’ve completed chemo. He recommended against it. However, I’m interested in extending my time until castration. My question is if I elect to forgo ADT how do I monitor my PSA and t-level? How often do you get these tests and do you pay out of pocket, or is there less expensive alternatives than major local labs? I doubt that if I elect to go against MO's recommended treatment that they will continue to monitor me.

noahware profile image
noahware in reply to Stevana

I would not worry about having to pay for labs out of pocket, because they will still be medically appropriate and covered by insurance, within appropriate frequency limits (every few months?). Is it possible you will need to find a different doc, who is willing to order the labs and monitor PSA changes and T recovery during an ADT vaca? Perhaps.

I assume you are aware that iADT gives no assurance of any delay to becoming CR, which is of course why many docs do not suggest it. But there are still plenty of docs who see it as a reasonable choice for some men, since there is no abundance of data showing clear inferiority to cADT.

As an aside, have you talked to your nivolumab doc about the potential for adding some radiation in hopes of realizing some synergy between the two? (The stimulation of the immune system called the "abscopal effect" was just discussed in a post by Tall_Allen.)

Stevana profile image
Stevana in reply to noahware

Will look at TA's post. Thanks for your perspective on this topic. I will definitely research this more before making a decision. The nivolumab is being received as part of a clinical trial along with docetaxel, which will be continue for 24 months after chemo ends. The trial does not include any radiation treatments. I would have to leave the trial if I wanted to seek any alternative treatments. If I stay to the end I will likely be castrate resistant by then. I have until early Dec, when chemo stops, to make a decision on iADT. Thanks again.

LearnAll profile image
LearnAll in reply to noahware

Very logical analysis..I agree with many of the things you wrote. I am off lupron and Zytiga for almost 9 months now. No symptoms. Last week ..T started rising like a rocket..PSA start going up too since last week. Successfull 9 months off period of Intermittent ADT. Getting all lab tests and MRI on wednesday to decide if it is time to get back on ADT train. Goal is to delay androgen resistance..

I wouldn't freak out over 3 weeks with no Zytiga. Now if it were 3 months I would be very concerned.

A more objective indication can be a PSA test now to compare with the last one befor starting the new medicine

The cancer rage is not that fast so I wouldn't be concerned about losing a little time, in the short term, especially if his PSA is still low and no symptoms. I didn't start Zytiga until my PSA hit 26 and I've been udetectable for over 2 years now.

You need to take to care of the immediate concerns first, I think the PCa can wait a little.

Fight11 profile image
Fight11 in reply to

His psa is doubling every month

in reply to Fight11

Mine was doubling every three weeks. I know the anxiety with that. Definitely don't want to wait too long, but have to deal with the more immediate threat first.

larry_dammit profile image
larry_dammit

You might call the tech line at zytiga and see what they have to say. Good luck Warrior 🙏🙏🙏

Muffin2019 profile image
Muffin2019

Been on lupron for 36 months and lost some effectiveness now added casodex to start a second line of defense before moving on the more expensive stuff. My dr feels as I do that the lupron is still working and still responding to it so the casodex will also work well for a number of years, it has no side effects other than the same as lupron and it is no cost to me through insurance. Keep on researching, it will help.

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