Frank
“Not continuing to fight is not an option.”
2021 Update
Update Jan. 25, 2021
Another Eligard injection. PSA .30 Testosterone < 3. Next step is another PET/CT Scan with Axumin, early April, see Oncologist mid-April and go from there. Hope no recurrence but I’m not betting on it. Continuing to stay at home, social distance, wash hands, use hand sanitizer, mask when leaving the house to run errands, meds, groceries, gas, etc. That’s about it. Oh yeah, I’m feeling fine.
Update Mar 17, 2021
HAPPY St Patrick’s Day. Great to be alive.
MRI last week indicates mets to spine again. Also, L2 vertebrae has collapsed- causing pain when I stand and walk. Today I had a couple of procedures I haven’t been aware of. Radio frequency ablation to the L2 to eradicate any residual cancer and kyphoplasty, a process of injecting cement into the vertebrae to return it to normal height. It helps relieve pain. Tomorrow I have a PET/CT scan with Axumin and next Tuesday I meet with my Oncologist. Most likely more chemo and depending on the genomic testing, PARP inhibitor may be in store. Will update again next week.
Update Mar 23, 2021
Met with my Oncologist to get a report on my PET/SCAN with Axumin. Cancer in L2 vertebrae. Kyphoplasty was a success. Also, surgeon did radio frequency ablation on the tumor and general area. Some activity in Prostate and a couple of places along spine. Otherwise unremarkable. Good news, no chemo now, continue Zytiga with prednisone and Lupron. Back pain free. PSA .43
Update July 13, 2021
Nothing special, except the fatigue and chemo brain is getting worse.
Got my Eligard injection, PSA has crept up to .87, testosterone still less than 3.
2020 Update
Update Feb 27, 2020
Been on a wild ride. Recently spent 6 days in the hospital due to Flu A. Several tests for my lungs and heart. Heart is fine, lungs have some COPD, but not severe. PSA Jan 14th was .11, Feb 10th it was .29. Very low, but rising and doubling fast. Since had recurrence to bone (spinal column) in Sept 2018, and PSA was undetectable, time for more scans. Had MRI with and without contrast on lumbar region and thoracic region, Bone Scan, on Jan. 31, recurrence not detected, so ordered PET Scan with Axumin. Had it Feb. 16, recurrence detected in upper portion of left femur, and a couple of spots on spine. Seeing the radiologist again in a day or two. Know him well, 86 sessions already. Will find out how many this time. Also, Oncologists is recommending Zytiga with Prednisone. Don’t know how I can pay for it, but they said not to worry, they can find help for copays, etc. Just what I wanted, more radiation treatments and more chemo. Oh well, still better than the alternative. The journey continues.
Update March 5, 2020
Heard from Oncologist’s office, co-pay for Zytiga is $708 per month. Told them I couldn’t afford it. They will research financial assistance and let me know. Met with my Radiologist, scheduled CT scan for March 11, then begin IMRT radiation shortly thereafter. Not going to be too bad, 15 sessions to femur, nothing to spine at this time. Need to be careful, no lifting or exercise for now. Don’t need to chance a fracture to femur. When I complete radiation on femur I will have received a total of 101 radiation treatments since diagnosis Feb 2016. One Radiologist asked me if I was an alien. My Oncologist says my case is bizarre. Tumors don’t show on MRI or Bone scan, PSA is only .29 and testosterone 0. The other Radiologist is confident my cancer has mutated and with my high Gleason score of 10, the metastatic disease isn’t producing PSA. I guess I am. Pretty much have to rely on symptoms and PET Scan with Axumin. The good thing, I feel good.
Update March 27, 2020
Have now completed 8 of 15 IMRT radiation treatments on my left femur neck. Also, my Oncologist Office found me financial assistance (Johnson & Johnson Patient Assistance Fund) for Zytiga, began taking it and prednisone a week ago. No cost to me. No side effects so far. I’m sheltering in place, due to the coronavirus, except for trips to radiation session. Never thought I’d look forward to getting treatments, but it’s the only time I get out of the house. Anyway, I’m blessed.
Update April 6, 2020
Done with radiation on femur. Met with Oncologist, will continue with Zytiga/Prednisone and Lupron. More scans in 3-4 months to see how I’m doing. Remaining under self-quarantine on Doctors orders. Feeling good. I’m blessed. Let the journey continue.
Update August 31, 2020
2 more Lupron injections. Bone scan negative, PSA.29. Doing good.
Update Nov. 2, 2020
Another hormones shot, Eligard this time, apparently there is a shortage of Lupron. Awaiting PSA results, as if it matters. I’ve had 2 recurrences with PSA < .30. Oncologist wants to wait to see how the Zytiga/Prednisone is doing. In early 2021 may get a PMSA scan. More sensitive than the PET scan with Axumin I had this past Jan. When found the tumor in my left femur. Other than being fatigued and weak, I feel good, no pain, and optimistic. Journey on.
2019 Update
Update Jan 29, 2019
Met with Oncologist today. Results of Axumin PET/CT Scan showed no evidence of metastatic disease. PSA still .01, therefore no Jevtana at this time. Did get another Lupron injection and told to come back in 90 days. I’m blessed.
Update Sept. 11, 2019
2 more Lupron injections, doing fine PSA .03. No complications. Now working 2-3 days a week.
Update Nov. 11, 2019
Another Lupron injection Nov 4, PSA.05. Doing pretty good. Still working 2-3 days a week.
2018 Update
Sept. 20, 2018
Severe back pain thought to be sciatic flare up. MRI with contrast detected several lesions along spinal column, one tumor compressing spinal cord. Started steroid, dexamethasone, last Thursday, pain greatly reduced. CT Scan later today 9/24/18, begin IGRT radiation treatment, 16, tomorrow and then other drugs or a new clinical study. By the way, PSA only increased from .0, undetectable to<0.01 in 6 weeks. Let the battle resume. And, testosterone is 0. Mine is a tricky bastard. Possibility mine has mutated from andeocarcinoma tumor to Neuroendocrine tumor, or maybe a secondary cancer. A different beast, only about 1% are being found to do this. CT scans soon and biopsy to identify the monster. Be vigilant. Prayers.
Update Oct. 13, 2018
Scans done, 14 IGRT radiation treatments done on spinal column, 2 to go. Biopsy soon, meeting with Oncologist on Tuesday. Over 2 years on ADT. The journey continues.
Update Oct. 15, 2018
Results of CT scans, abdomen and pelvis clear of any metabolic activity, yet, MRI with contrast revealed Mets to spinal column. CT does show a nickel sized speculated nodule in the left lung upper lobe, possible Mets, possible primary lung cancer. Find out tomorrow about biopsy, but Radiologist did indicate he could do a special radiation procedure on the mass in only 5 sessions. Damn.
The journey continues. Such a long and winding road.
Update Oct 16, 2018
Oncologist said he hasn’t seen a case like mine in 32 years of practice. Next step is PET/CT scan next week and possibly start Jevtana in a couple of weeks.
Update Oct 30, 2018
Another Lupron injection. Holding off on Jevtana, May start late January. On January 23, 2019 I will have Axumin PET/CT Scan.
Meet with oncologist on Jan 29 to decide future treatments.
2016 Story
Diagnosed Jan. 2016
For me, it has taken a team of amazing doctors, each with different specialties. Primary Physician (Internal Medicine) who detected my elevated PSA at 141, then to Urologist for the biopsy to learn I had a Gleason score of 10, stage 4, highly aggressive metastatic prostate cancer involving distant lymph nodes, then to Oncologist for chemo (taxotere 6 sessions 3 weeks apart) and PSA now 350. Once done with chemo, on to Radiation Oncologist for radiation on prostate for 45 sessions and 25 more on lymph nodes. Back to Oncologist for ongoing hormone therapy (Eligard or Lupron) injections every 90 days. PSA down to <0.1 or undetectable for 26 months. In my case all have been instrumental to my positive results. They all talk and consult about my treatments. It hasn’t been easy, but I’ve needed every one of my Doctors. I wouldn’t change a thing. Best of luck with your journey and I’ll say a prayer, or two, for each and everyone affected by this monster.
During my entire journey I’ve been blessed with excellent Doctors, nurses, office personnel. The all give me as much time as I need for my questions. All decisions have included me, and my Oncologist, Radiologist, Urologist and Primary Physicians. They all consult among themselves about my cancer treatments.
All of this started when I visited my Primary Physician, with concerns about frequent urination and it disrupting my sleep. I was getting up 3-4 times a night and was tired. This had been going on for about 6 months before I decided to find out what was going on. Other than that I had no symptoms and knew nothing about a prostate, PSA, DRE, prostate biopsy, Gleason Score. Fortunately my medical team explained a lot to me and I’ve researched with Google for 5 years now. I mostly stayed with articles by well known centers like Mayo Clinic, M D Anderson, Ochsner Clinic, and other well known and reputable hospital and research facilities.
One thing I’ve tried to do is keep a positive attitude and have never had the feeling “why me?”. I kid around with my doctors, nurses and office personnel. During my first visit with the Oncologist, we could discussed my diagnosis and treatment, my 3 adult children went with me. We were told it was serious, PSA of 350, Gleason 10, with metastatic disease. One daughter asked how serious and the Oncologist looked at all of my kids and he said “Your Dad has big boy cancer,”. He said it was curable, but was treatable. We would go with an aggressive treatment since I had aggressive cancer.
The chemo, ADT, 101 IMRT radiation treatments, the addition of Zytiga with Prednisone have taken their toll. Mainly, the fatigue really changed my life. Before diagnosis, I worked full time, played golf, loved fishing in my boat and taking my camper to various camp grounds. All of that is gone, just too fatigued and too weak. And the past year with the fear of Covid, I’ve been pretty much home bound. However, I’m pretty much pain free and alive. I’m not depressed and haven’t been the entire time. I keep doing what the Doctors tell me and deal with the side effects as they come. Not continuing to fight is not an option. The worst part of the entire ordeal is the unknown. It’s like I’m carrying a bomb, not knowing when it’s going to explode.
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