Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Jerry J

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 2/25/2021 11:51 AM (GMT -6)
Well my cancer has metastasized to my Lymph nodes Dr put me on Lupron and Casodex stopped working PSA went to 65.8 Testosterone-3. Then Dr put me on Lupron and Xtandi PSA went to 51.1 now in one month went to 73.0 have no idea where to go from here.
profile picture
alephnull
Veteran Member
Joined : Dec 2013
Posts : 2054
Posted 2/25/2021 11:56 AM (GMT -6)
Sorry to hear that. How do you know it's the lymph nodes and not bones?
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 2/25/2021 12:06 PM (GMT -6)
Had a Pet Scan showed two lymph nodes involved but very close to abdominal aortic and would be to dangerous.
profile picture
JNF
Veteran Member
Joined : Dec 2010
Posts : 5178
Posted 2/25/2021 1:33 PM (GMT -6)
Jerry, please remind us where you are and who is providing your treatment.
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 2/26/2021 10:16 AM (GMT -6)
I live in Fl and have treatment at Lynn Cancer Center in Boca Raton and Cleveland Clinic in Weston, Fl.
profile picture
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 1996
Posted 2/27/2021 10:30 AM (GMT -6)

Hello, Jerry1 ----

Mindful of you, and have been thinking of you, since reading your post.

Do you have a great medical team working for you? I am thankful when I don't need them, but rely on them when concerns arise in my case.

You deserve a top-notch oncologist, looking after your case. Do not hesitate to seek out the best and brightest ---- as your case has some inherent complexities, as you have shared.

Just a suggestion to consider ----- have you discussed the topic of chemotherapy treatments?

It's a daunting subject, when first considered ---- as I know from first-hand experience, but it is another form of "attack" that hasn't been mentioned in your recent posts.

These days, individualized chemotherapy infusions can be specifically mixed, based on the patient's needs.

Other chemotherapy components can be mixed in --- dosage strengths can be adjusted ---- and timing of each infusion can be adjusted.

I was given full-strength, powerful chemotherapy infusions, but they were given three weeks apart, allowing my immune system time to rebound, in between.

A friend of mine benefitted from low-dose infusions, given once a week, over time.

Another friend of mine needed CARBOPLATIN added to his chemotherapy infusions, for his case of prostate cancer.

Dr. Kwon, at Mayo Clinic, calls these individualized, specially formulated infusions "chemotherapy cocktails" --- which helps me better understand the blending and mixing that can help each patient.

It's not always easy, but we have to keep our minds open to treatments that can help us the most.

I think chemotherapy is certainly something you might talk over with your oncologist.

Many of us here have pursued chemotherapy --- would this be an effective weapon for your case, I wonder?

Please keep us informed ~~~ let us know how you are faring.

You've got comrades here, rallied around you!

Handshake, support, and encouragement, from across the miles ~~~
CYCLONE ~~~ # Iowa State University
profile picture
JNF
Veteran Member
Joined : Dec 2010
Posts : 5178
Posted 2/27/2021 10:52 AM (GMT -6)
Thanks Jerry. Some other oncology contacts I would consider would be the Moffitt Center in Tampa and Oliver Sartor at Tulane or Eugene Kwon at Mayo. I know these will often collaborate with your local MO. Have you asked your medical oncologist whether they collaborate with other PCa specialists? Additional assessments are often enlightening and can be effective.

There could be other consideration as Cyclone indicated. Have you and your doctors discussed Provenge? Opdivo/Yervoy? Others?
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 3/3/2021 11:11 AM (GMT -6)
The oncologist who has kept me alive for 12 yrs has just returned from a years leave. He wants me to do Taxotere chemo infusions 1 every three weeks. The problem is I just finished 7 very strong infusions for a UTI that is immune to most antibiotics. He feels we need to wait at least
6 weeks to make sure the infusion medication is out of my system. He is trying to get approval to get some help with cost for Zytiga @ Prednisone for at least 6 weeks to see if we can slow progression. I was on Lupron and Xtandi for 3 months that did nothing last PSA was 73.1. Apparently hormones to not work for more then a month for me. I am so weak from these drugs
And infusions plus Covid shots that I fell going to the bathroom last night. Does Zytiga and or chemo also make you very weak. Appreciate any info.
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 3/5/2021 12:08 PM (GMT -6)
Well Doctor started me on Zytiga and prednisone yesterday but the fatigue is awful. Does
Everyone feel like this or do I have to get use to it.
profile picture
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 1996
Posted 3/5/2021 4:46 PM (GMT -6)

Hello, Jerry ----

Mindful of you. I am reaching out to you today.

I was my oncologist's first patient on ZYTIGA --- now the generic form.

Many of us here have been on ZYTIGA - also known as "Abiraterone Acetate" --- and I have been on it for 5 years.

I am mindful of your health concerns that you described.

A bit of exercise, if possible, can help lessen the fatigue ---- and an earlier bedtime or short nap might help you, as well.

Please check the current feed on this website now.

I just now bumped up a detailed thread entitled "ZYTIGA: OUR COLLECTIVE EXPERIENCES" ---- and you will find it helpful.

A bunch of us banded together, to create a thread with first-hand experiences.

Read through it, and print it off, if you wish. It will give you background and insight.

Please know others are thinking of you. I am just one of those people --- sending you my encouragement and support.

Handshake, comradeship, fellowship,
CYCLONE ~~~ # Iowa State University
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 3/20/2021 1:14 PM (GMT -6)
Well after two weeks on Abiraterone Acetate (Zigna) & prednisone my PSA has doubled from 73.0 to
141.6 it is now the weekend and cannot talk to the doctor until Monday when I am suppose to take my 3 month Lupron shot. Since Lupron and hormone therapy is apparently not working I feel
Why should I take it just to feel lousy. I guess next step is chemo therapy. Hormone therapy does not work for me and never has but they keep giving them.

Jerry1
profile picture
halbert
Veteran Member
Joined : Dec 2014
Posts : 5215
Posted 3/20/2021 3:49 PM (GMT -6)
Jerry, that really sucks. I hope you find a doc who is willing to do what is needed. Hang in there.
profile picture
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 1996
Posted 3/20/2021 8:24 PM (GMT -6)

Hello, Jerry ----

I am thinking of you this weekend, and it's hard to wait over a weekend, when you want to talk to your doctor.

Have you recovered from the strong infusions you had to address the UTI ?

I hope your doctor has insight, guidance, and advice for you.

In an earlier post, you mentioned your doctor had suggested chemotherapy infusions.

If so, many of us here have gone through infusions. It's a different way to attack the cancer. Chemotherapy treatments go after the cancer cells that are resistant to hormone therapy.

Sending you my encouragement and support ~~~
CYCLONE ~ # Iowa State University
profile picture
theswan
Veteran Member
Joined : Nov 2005
Posts : 676
Posted 3/21/2021 3:08 PM (GMT -6)
I'm hoping that you find the best combination of treatment.
I know very little about these things but feel a kinship with all the good people here.

Best wishes to you

Glen Heinsohn
profile picture
Jakester
Regular Member
Joined : Aug 2009
Posts : 295
Posted 3/22/2021 9:21 AM (GMT -6)
Jerry, our wishes are for your docs to find the right combination for you. We started our journeys on the forum about the same time and I've kept up with your posts. Please keep positive and play a little tennis (even in your daydreams) to help distract you.

Our best,
Jakester
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 3/23/2021 12:27 PM (GMT -6)
Well finally got to the doctor he took me off
The Zyntia and is arranging for a Pet Scan and then start Chemo. Once every 3 weeks for 10 treatments. Had anyone had success
With chemo. It seems nothing else works
Jerry
profile picture
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 1996
Posted 3/24/2021 4:22 PM (GMT -6)

Hello, Jerry ---

Check your screen tonight --- there's TWO very informative threads about CHEMOTHERAPY infusions for you to read.

They are entitled, as follows:
1. My Taxotere Experience Diary --- started by: SchoolPsych
2. Taxotere Side Effects --- started by: Madeline Smith

Print both of them off, and consider them your personalized guide for navigating through chemotherapy infusions, if you embark on a series of treatments.

I was in the first wave of fellows treated in this country, when the "early chemo plan" first became a standard of practice, following clinical trials.

Chemotherapy isn't a "Sunday walk in the park" --- but many of us here have gone through chemotherapy infusions.

I was my oncologist's first patient to participate in the "early chemo plan" --- and that was over six years ago now.

Chemotherapy attacks cancer in a different way --- it has cytotoxic properties, which attack the stubborn and resilient cancer cells that other treatments may not attack.

I had six treatments, given 3 weeks apart. I have described chemotherapy like a Winchester repeating rifle --- you are "shooting" at the cancer, in a repeated fashion. I think that visual image helps understand the potential benefits of the treatments.

In my case, I saw my PSA go down, as the weeks went by. Each case is different, but that was my experience.

Please look at your screen, and you will see the two suggested threads that I booted to the top this evening --- they are easy to find, right now.

Several of us here decided to band together, to share our first-hand experiences with chemotherapy. We shared our experiences in "one brother to another brother" style --- and we also listed things we learned along the way.

The two threads can give you suggestions for mitigating side effects --- and navigating through the series of treatments.

I hope the two threads will be helpful to you this evening, as you consider new treatments ahead.

With my best to you ~
CYCLONE ~ # Iowa State University
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 3/26/2021 9:52 AM (GMT -6)
Thank you so much for the information right now I am off all meds waiting for results of
Pet Scan. See nurse on Tuesday to go over what to expect from chemo this information will be very helpful.
profile picture
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 1996
Posted 3/27/2021 5:53 AM (GMT -6)

Glad you found the two chemotherapy threads informative, Jerry.

Let us know what you find out from your scans --- keep us updated on how you are doing.

With my best,
CYCLONE ~ # Iowa State University
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 3/27/2021 10:36 AM (GMT -6)
Yes the threads were very informative thank you. The results of my Pet Scan shows the lymph
Nodes are larger but no major organs involved. Meeting with oncologist on Tuesday to set up
Chemo. Will keep you posted.

Thanks again
JerryJ
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 4/4/2021 9:35 AM (GMT -6)
Well started my first chemo treatment on Friday with Taxotere the treatment went well but about
Five hours later I crashed and have feel like I was hit by a truck. I am taking Nausea medicine
not helping Fatique & weakness.
profile picture
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 1996
Posted 4/4/2021 11:17 AM (GMT -6)

Hello, Jerry ----

Mindful of you --- glad the infusion part went well ...

Now you are encountering "the crash" ---- and yes, it can pack a wallop. It's the notorious part of the treatment cycle.

My doctor timed the infusions so they would hit on weekends, so that I could keep teaching school full-time. It wasn't always easy, but resting on those notorious "crash" weekends helped.

I found I needed to keep life simple on those weekends --- quiet and restful.

Turn on some quiet music --- take some naps and doze ---- and get to bed early tonight.

Drinking water can help. It flushes the toxins out of your system. The next day or two will be rough, quite likely, then things ease up.

Make sure you have family, friends, or a neighbor checking in with you, along the way.

You're encountering the roughest couple of days in the treatment cycle. In a day or two, you will feel more restored.

Take a doze on the couch or your favorite recliner. Sip ice water, along the way --- healthy hydration.

Focus on "one day at a time" ---- your body just encountered a new & unexpected "shock to the system" ---- and you will slowly rebound.

You will feel your energy slowly returning.

Rest, relax, rejuvenate, rebound, recover ...

Thinking of you this weekend, following your first treatment ~
CYCLONE ~ # Iowa State University
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 4/4/2021 2:46 PM (GMT -6)
Thank you so much for the information it is very encouraging to hear from someone going through this endless fight.

Jerry
profile picture
Cyclone-ISU
Veteran Member
Joined : Oct 2014
Posts : 1996
Posted 4/8/2021 9:25 AM (GMT -6)

Hello, Jerry ~~~

Just circling back, to check on you, now that a few more days have passed since your latest chemotherapy infusion.

My oncologist had great wisdom, and timed my TAXOTERE infusions for late on Wednesday afternoons. With the "energizing" steroids, I felt "ramped up" on Thursday and Friday so that I could finish teaching each week.

He timed the infusions so that the "chemo crash" would hit me over the weekend --- and the "crash" was always quite noticeable.

I've always said --- let your favorite recliner or couch become your best friend, when the "crash days" hit. You suddenly feel like your energy is draining away --- like a car battery that doesn't want to start on a cold winter's morning, so to speak. It's a general feeling of lethargy and malaise ...

Best to rest and relax during those "crash" days --- a couple of naps, some comfort food, some relaxing T.V. shows, and an earlier bedtime.

I would return to school, to start a new week, each time --- Mondays were a little rough --- but then on Tuesdays, I would be teaching and I could literally FEEL my energy rebounding. Then you know the energy "crash" is fading away, and your energy is returning.

I learned the importance of staying hydrated --- water helps the body flush out the toxins. Once, I slacked off on my water consumption after an infusion, and didn't bounce back as quickly.

I did my best to go for some short walks, too --- so it's a balance between resting up, yet staying active.

So --- here's hoping you are feeling that RESURGENCE of energy, once again, Jerry.

Wanted to let you know you have other "battle brothers" who are thinking of you --- and I am just one of many here who are thinking of you, during your treatments.

With my best to you ~~~ from "one brother to another" ~~~
CYCLONE ~~~ # Iowa State University
profile picture
Jerry1
Regular Member
Joined : Mar 2007
Posts : 498
Posted 4/8/2021 9:54 AM (GMT -6)
Well I am doing a little better the doctor put me on 30mg of prednisone a day helps some but still
Sleeping all the time. Now my Urologist thinks I have a UTI sent for culture if so, I would have to
Go to infectious disease Dr for infusions since I am resistant to regular antibiotics. Thanks for checking up.

Jerry
✚ New Topic ✚ Reply
12

More On Prostate Cancer

Positive For Prostate Cancer

Positive For Prostate Cancer

Side Effects Of Prostate Cancer Radiation Treatment

Side Effects Of Prostate Cancer Radiation Treatment


HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
YouTube Facebook Twitter Instagram Pinterest LinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.