Ron has prostate cancer 😟

The medications are wiping him out. He’s taking Nubeqa twice a day and he got the Elegard shot yesterday morning. One of the side effects of both of them is fatigue.

There’s a big disconnect between what we were expecting and what’s actually happening. He basically hasn’t gotten out of bed except to use the bathroom and for meals. He says he’s never experienced fatigue this extreme and I’ve never seen him this inactive.

Doc says this is normal. Testosterone affects energy, muscle strength, mood, red blood cell production, and stamina. Starting the meds cause testosterone to drop abruptly.

As the meds drop his testosterone, and as his body gets used to that, the fatigue will level out, but it will be at least a couple of weeks before this extreme fatigue phase passes, leading to a less intense tiredness.

It’s hard to watch this strong, capable and active man suddenly feel frail and weak. Even though I understood intellectually that this would happen, emotionally it’s shocking. Just feels wrong. 💔
 
It is a shame that we have to suffer through the side effects of medications. Once our body gets regulated to the chemicals that we have put into our body, I think we should expect some normalcy with the leveling off. Like the doctors always tell us, “You have to be patient. It takes time for the meds to level off.”

I, along with others will continue to check back and hope to see a path forward with Ron regaining some strength and energy. Please keep in mind that several members here are taking this trip with Ron, so we have to keep a positive attitude as we go down that road, even if it’s one step at a time.

I hope all of you have a Blessed Day.
 
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Rider77 said:
I'm now 77 I always get my lab work done prior to appointments with my primary care physician. It is my feeling that the exam is much more beneficial if the information is fresh. Upon reaching my 75th birthday I noticed that there was no PSA result in my lab results and raised that issue with the doctor. I get my healthcare at the VA and have been extremely pleased with the care I receive. However my doctor told me that is was a policy not to test PSA for men over 75, and that he would get a lecture in his management review if he ordered the test.

To say the least I was shocked. I literally asked if it was the VA's preference to let us die if there was a negative test result, and he really didn't give me an answer. I'm not one to take things passively when my health is involved. I've done two things since then. 1. I had a the PSA test done and it was paid for by my medicare and medicare supplemental insurance. There was not an issue. Relieved but not satisfied. 2. I paid a visit to the facility Director and voiced my objection to the policy.

My actions may not make a difference, but I'm a Vietnam veteran and was exposed to agent orange and noted in my medical records. Prostate cancer diagnosis is high on the list of effect experienced by individuals such as me. I will continue to object to their policy, and I will also continue to get the test performed even if I have to start paying for it without insurance coverage.
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I've known a few men over the age of 75 that has been diagnosed with prostate cancer. Had they not been test for it, they'd never known until it was too late. Prostate cancer is one of many cancers that is treatable and with a good prognosis if caught early. I'm glad when you were tested for it, your PSA came back normal.
 
We were at the Sarah Cannon Cancer Center yesterday from 8.30 am to 4.00 pm. What a day.
Ron chose to enroll in a clinical trial that’s about a year away from FDA approval to treat his cancer, rather than the mainstream treatment that’s been around for years.

Mainstream = treatment with Dosetaxal which directly kills cancer cells, and some healthy cells too.

Zaluritamig = clinical triial bio specific immunotherapy drug that pulls the immune cells close to the cancer so they can attack and kill the tumor cells.

Ron much prefers the idea of a drug that works with his natural immune response, so we spent the day yesterday for him to undergo a variety of tests and scans to prep him for the clinical trial.The oversight on the trial is intense, a great deal more scrutiny including a couple of overnight hospital stays to closely monitor the immediate side effects and his vitals.

He has a couple more scans scheduled next week, then he begins the treatment 31 March. We’re nervous, but hopeful.
 
Ronni said:
What a great idea @Jules. I’ll do some research. Thank you. 🙏
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Support groups are a blessing, Ronni. When my daughter-in-law passed from a very toxic form of uterine cancer within 4 months, I thought my son would lose his mind. I finally convinced him to find a bereavement support group, which he did. It was near his home, and at first he told me that it was not for him. Well, I got him to stick with it, and after 8 years, he not only has some of these original members as dear friends, but has become a bereavement counselor himself. He bought a memorial bench in a Deep Cut garden within a park in Middletown, NJ. On nice days takes his groups out there, which loosens the group up more, and they love him for it.

The ladies sit on Kelly's bench, and the men sit on the surrounding wall and grass. It was a great idea of his to do this. Deep Cut Gardens can be found it many teaching parks in various cities all over the country.
 
It seems I am now walking a path very similar to Ron's. I questioned why I wasn't seeing PSA results in my lab results. The response was that the CDC recommended not to perform the test in men over 75. Upon some insistence on my part the test revealed PSA of 6.728 and the follow up test had a score of 7.145 just 34 days later. An immediate CT test was performed revealing suspicious images of possible metastatic prostate cancer.

The next test just 4 days later was a PSMA Pet Scan with an isotope injected to provide highlight to areas with the PSA antigen. Cells lit up indicating metastatic prostate cancer in surrounding lymph node and a small place in one rib bone. Now we are ready to move on to the biopsy which will more clearly provide information to guide a treatment plan.

I am told that it is unlikely that chemo will be involved and radiation treatment is yet to be determined. The hypothetical approach will Adrogen Deprivation Therapy, basically starving the cancer cell access to testosterone. Definitive decisions on this will be based upon the pathology data from the biopsi. Like your situation we are on a roller coaster as we travel an unfamiliar path. Just like anyone else I keep finding questions to put forward and my note book for this purpose is getting a lot of use.
 
Rider77 said:
It seems I am now walking a path very similar to Ron's. I questioned why I wasn't seeing PSA results in my lab results. The response was that the CDC recommended not to perform the test in men over 75. Upon some insistence on my part the test revealed PSA of 6.728 and the follow up test had a score of 7.145 just 34 days later. An immediate CT test was performed revealing suspicious images of possible metastatic prostate cancer.

The next test just 4 days later was a PSMA Pet Scan with an isotope injected to provide highlight to areas with the PSA antigen. Cells lit up indicating metastatic prostate cancer in surrounding lymph node and a small place in one rib bone. Now we are ready to move on to the biopsy which will more clearly provide information to guide a treatment plan.

I am told that it is unlikely that chemo will be involved and radiation treatment is yet to be determined. The hypothetical approach will Adrogen Deprivation Therapy, basically starving the cancer cell access to testosterone. Definitive decisions on this will be based upon the pathology data from the biopsi. Like your situation we are on a roller coaster as we travel an unfamiliar path. Just like anyone else I keep finding questions to put forward and my note book for this purpose is getting a lot of use.
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@Rider77 I understand 😟

Nubeqa twice daily and a 6 monthly Eligard shot are the ADT meds he’s been prescribed. That, in conjunction with the Zeluritamig infusion at regular intervals, will hopefully continue the hormone therapy’s efficacy for considerably longer than just it alone.
 
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Michael Z said:
Is Ronni taking vitamin D as a supplement? If not, perhaps talk to your doctor about this. Also, diet could help. See Healthy Immune Doc
I am not suggesting these are cures, but they could help. Praying for you.
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We’ve both been taking a variety of supplements for many years and Vit D is one of them. He’s added several others on the advice of his doctor.

He also radically changed his diet. We ate healthily and mindfully before, but he’s tweaked it to more closely follow a cancer fighting diet.

I’ll check out the link you provided, thanks!

Ron’s lost a few pounds in the last month. We’re not sure if the dietary changes or the cancer is causing it.
 
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