Latest update: At the time of my... - Advanced Prostate...

Advanced Prostate Cancer

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Latest update

grahaminator63 profile image
24 Replies

At the time of my profile creation, I was receiving Lupron shots every three months and in the middle 6 cycles of Chemotherapy (docetaxel i.e., Taxotere). The chemo treatment ended in March 2017 with full expectation to follow it up with radiation treatments. I was still continuing with the Lupron, regardless of any outcome. I had scans taken in April and met with my oncologist and radiologist to discuss next steps. They informed me that I responded well to treatment. The scans showed significant reduction in the lymph node mets. The reduction was so significant that they recommended no radiation. The decision to go with no radiation was that they would have to target such a large area that I would become much sicker than I was from the chemo.

Shortly after that was when the Stampede results came out about using Zytiga in combination with ADT as first line treatment for advanced PCa. I talked to my oncologist (Dr. Matthew Smith, Mass General Hospital, Boston, MA) and although there was no data from the trial to support taking Zytiga after chemo but I may want to start, and so I did. I wanted to keep aggressive with my treatment even though results looked promising. I started Zytiga in November 2017 along with another set of scans. These scans showed no cancer at all in the Lymph Nodes. I was elated but am still maintaining the current treatment.

I am glad to be a part of this group and tell everyone that the knowledge and encouragement shared in this site is as valuable as the treatment anyone receives. Thank you all!

Craig

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grahaminator63 profile image
grahaminator63
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24 Replies
JamesAtlanta profile image
JamesAtlanta

Congratulations on a great response! And for sharing your story! So uplifting! Best of luck with your ongoing treatments!

James

spinosa profile image
spinosa

man! That's great!

rust profile image
rust

Craig, thanks for sharing your good news and optimism. As I am about to enter the beginning of metastasis I have been experiencing many different types of feelings mostly of losing hope. I have been seeing a counselor every few weeks since November and that has helped. Learning to appreciate now and enjoy and show love to those around me everyday.

grahaminator63 profile image
grahaminator63 in reply to rust

You're doing the right thing. Live in the now. Forgive the past and get on with living life. Do not keep any anger inside you. Cancer is a disease of anger. Turn your life into JOY. That is where healing begins. I'll be praying for you.

Craig

Litlerny profile image
Litlerny in reply to rust

Hi rust. Never give up hope. And as hard as it might be, try to keep a positive attitude. It sounds like you are on the way toward that end. Good man! My journey started 3 years ago with a routine physical by my family doc, who told me he felt a hard spot when he did a DRE. That led to a biopsy by a local urologist that showed cancer in all 12 cores and a Gleason score of 7 (4 + 3). After that, a PET scan showed a hot spot on my lower pelvic area. So in the space of a month I went from blissful ignorance to shock, high anxiety, and depression about my diagnosis and my future. It took a while to lift myself out of that hole.

I’ve learned a lot over the past 3 years, both medically and personally. My PSA has remained undetectable and the one bone lesion has been dormant for a couple of years now. I’m really thankful for the many ways my life has been blessed, for my medical providers at the Mayo Clinic in Jax, and the support I have received from my angel/saint wife, my friends and family, and the people in this site.

Keep the faith!

Mark

Haniff profile image
Haniff

Hi Craig,

Glad to know of your success. I was diagnosed with Stage 4 Prostate Cancer with a Gleason score of 4+3 and it metastasized to the lymph nodes. I have just completed my 6th cycle of Chemotherapy, my PSA after the 5th cycle is at 4, and have been and will continue with 3 monthly jabs of Hormone , Lupron. My Urologist says from here, I have to take my blood tests, urination flow tests and continue with my hormone jabs. There has been no talk of any surgery or MRI Scans at the moment. He says they would monitor and see my progress. I am keeping my spirits up.

whatsinaname profile image
whatsinaname in reply to Haniff

Surgery is usually not performed on those with Stage 4 metastatic prostate cancer. The treatment suggested is usually hormone therapy (ADT) or radiation or chemo or some combination of all three.

Haniff profile image
Haniff in reply to whatsinaname

Thanks for the reply. I get the answer now. Wish me luck on my journey!

whatsinaname profile image
whatsinaname in reply to Haniff

All the very best, Haniff. Try and learn as much as you can about your disease. Try and pick an excellent uro-oncologist at a top notch hospital to advise you. If he/she is not proving good, don't hesitate to get a second/third/fourth opinion. Its your body, your health. Finally, stay calm, relaxed and objective. Cheers !!

Haniff profile image
Haniff in reply to whatsinaname

Thanks Bro. This keeps me warm on the inside. I must say I am quite afraid of what's to come but being in this community has cheered me tremendously. Thanks :)

grahaminator63 profile image
grahaminator63 in reply to Haniff

You're fighting hard. Keep up the positive attitude. We all know it takes a while get there but you keeping your spirits up can turn things around. Good luck!

Haniff profile image
Haniff in reply to grahaminator63

Thanks really appreciate all the brotherly love. Take care and God Bless.

thevvy profile image
thevvy

WELL DONE!! See guys, that's what happens when you actually STUDY for your tests! hahaha

Thevvy

Cmdrdata profile image
Cmdrdata

Borrowing a term from a fellow and friend with PC: “Keep fighting the bastard”. It is great that you have a doctor that is willing to support your desire for strong treatment path. What is PSA now?

grahaminator63 profile image
grahaminator63 in reply to Cmdrdata

.10 PSA. Unfortunately though, my PSA is not an indicator for my cancer because when I was diagnosed my PSA was only at 8. Regardless, I am still fighting the "bastard" as you call it. :)

lincolnj8 profile image
lincolnj8

Wow, I'm on the same treatments, the Chemo and Zytiga plus prednisone - 4 months now. Blood work steadily improving and energy levels are high. Your post is so encouraging. Thank you..

j-o-h-n profile image
j-o-h-n

For you:

youtube.com/watch?v=y6Sxv-s...

Good Luck and Good Health.

j-o-h-n Friday 04/27/2018 10:52 AM EDT

grahaminator63 profile image
grahaminator63 in reply to j-o-h-n

Thanks j-o-h-n! That's my new mantra, "Happiness is the truth". LOL

Litlerny profile image
Litlerny

Great news, Craig! Thanks for sharing it. Glad to hear that everything is working so well. I’ve been on Eligard & bicalutamide for 3 years, and just finished a 6 cycle course of docetaxel. My PSA has been undetectable since starting the ADT, but I wanted to be as aggressive as possible in my treatment plan.

I have a follow up appointment on Monday with my MO at the Mayo Clinic in Jax. I plan to discuss with him (again) the possibility of starting Zytiga now. The last time we discussed it, he said Zytiga costs about $5K per month, and he didn’t think Medicare and Florida BC would pay for it for me because I had a Gleason 7, no visceral mets, and only one bone mets that has been dormant for 2 years. Did you have any insurance issues?

I liked your reply to rust. A positive attitude and prayers are important elements of healing that you likely won’t hear from any medical provider.

grahaminator63 profile image
grahaminator63 in reply to Litlerny

I do not have any insurance issues. I am very fortunate that I work for a pharmaceutical company and our insurance covers Zytiga. I only pay a copay of $25 every month. I was also fortunate with my chemo drug, docetaxel. My company makes that drug and i got it for free. I believe that I was blessed to be hired in 2012 at my company not knowing what my future would hold.

Funny about your comment about what you don't hear from my medical provider or oncologist. He told me about my scan results by saying, "the cancer is not visible in the lymph nodes". My wife and I looked at each other and mouthed, "It's gone!" . The medical community is so negative. You have to interpret everything they say.

Thanks for the kind words. Good luck with future treatments.

jdm3 profile image
jdm3 in reply to Litlerny

Please keep us posted. As I mentioned in another post last week, I am particularly interested in your protocol and MO recommendations. My situation is somewhat similar. G7 (4+3, tertiary 5), one bone met, etc... I had SBRT and am on Lupron and Casodex and sense I should be getting more aggressive treatment. I am wondering if I should layer on chemo (?), and/or Zytiga (?), and/or add Metformin, Avodart, etc.... The combinations and sequencing of protocols is encouraging, but also confusing because it's hard to know what is best for our individual situations. So many variables. I see the my MO at Dana Farber in Boston in early June and will update the discussion.

grahaminator63 profile image
grahaminator63 in reply to jdm3

Hi jdm3

Good luck with your MO appt. My suggestion is to be as aggressive as possible by adding onto the Lupron with Casodex, Chemo, or Zytiga. But not more than one. The combination of Lupron and another drug does wear a person's energy down over time. My MO suggested we just do Lupron with chemo first and after about 6 months, when my body had recovered somewhat, I started with Lupron and Zytiga. Currently, the cancer is undetectable and my PSA is at .10. If you are ever looking for second opinions my MO at MGH is good and we also confirm his treatment with an MO at Sloan Kettering in NYC.

Keep up the fight.

jdm3 profile image
jdm3 in reply to grahaminator63

Thank you for following up. I appreciate it.

Going to DFCI tomorrow for labs, another scan, and appointments with RO and MO. I have been on Lupron and Casodex for six months. MO's plan was to stop at six months and watch the numbers. I intend to discuss (ask for) another six months of Lupron and Zytiga and then take a break if all looks good. I wonder if he will agree and/or bring up chemo as an alternative in advance of Zytiga. It sounds like many here start with the chemo and then do the Zytiga. Don't know if it's advisable since my met was to bone not lymphatic.

Depending on how it goes at DFCI tomorrow, I may be looking at MGH. Thanks.

You might be interested.... I had a phone consultation last week with Dr. Turner at Prostate Oncology Specialist just to get perspective and test my thinking. He suggested the additional six months with Zytiga. The reasoning being it could be more effective than the Casodex and if I can stand another six months now, I may have longer durable remission later. The idea, of course, trying to avoid going on and off ADT and avoiding castrate resistance for as long as possible. Fingers crossed. Finally, he also said to start Avodart when I stop ADT.

Best,

Josh

grahaminator63 profile image
grahaminator63 in reply to jdm3

Hi Josh,

It sounds like a good plan. I'll be praying for you.

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