Mrs. Tom-36

[Tom-36]

My husband was diagnosed Gleason 8 (4+4) aggressive prostate cancer 13 years ago when he was 68 years old. He has had many treatments over the ensuing years, beginning with brachytherapy (radioactive “seed” implants) followed by external beam radiation in Cancer Year (CY) 1.

In CY 3 he began hormonal therapy (Lupron Depot injections). By CY 5, he was diagnosed with HRPC (hormone resistant PC) and metastatic castration resistant prostate cancer (MCRPC).

By CY 7 it was time for chemotherapy for nine months, then chemotherapy was ceased. That same year he was prescribed Zytiga (250mg 4 tabs/day) with Prednisone with monthly injections of Xgeva.

In CY 8 he first experienced pain , primarily in the sacrum region, and is being treated with Hydrocodon-acetaminophin, which gives relief from the pain.

By CY 9 bone scans indicated cancer had spread (distant metastatic focus) to spine, rib, skull, leg and arm bones. External radiation beam therapy on L5, sternum, and T5 caused difficulty in swallowing due to a sore esophagus.

CY 10 he received Provenge therapy, followed by Xtandi.

CY 11 he had IXofigo, intravenous radiation. A bone scan indicated multiple ares of increased uptake (more mets).

CY 12 he began more chemotherapy (Jevtana) followed 24 hours later by an injection of Neulasta and an injection of Procrit when his hemoglobin count has been too low. Megestrol Oral suspension (40mg) has been prescribed for lack of appetite and has been effective. A wheelchair was prescribed and obtained.

[AlanLawrenson]

Hi Mrs Tom.Your husband has certainly been thru the mill. I am not a doctor but as a PCa sufferer in remission after PBT in 2013, I have made a very intensive study of pCa and its treatment. I also have a brother that is in Stage 4 of the disease. He is presently on enzalutamide.

All my research culminated in me writing a best selling book on my cancer journey. I also speak regularly at Prostate Cancer Support Groups in New South Wales,Australia. My present book includes details on all the drugs you referred to in your posting. I find it very frustrating that all treatments offered are Big Pharma solutions. I am in the final stages of adding 50 or 60 pages in a new edition that will be available internationally by June this year. These new pages focus on many alternative therapies that are saving severely ill PCa patients every day. When my brother completes his enzalutamide course, he will switch to a series of these alternative treatments as they are the only therapies that will save his life.

[Bogiedog in reply to AlanLawrenson]

I would be interested in hearing about the book when it is available.

[AlanLawrenson in reply to Bogiedog]

The book titled "An ABC of Prostate Cancer Today - 2nd Edition" is now available from Amazon.

[jimsdaughter]

Hello Mrs. Tom. Your story sounds very familiar. I think my dad has tried all of those treatments. He began his journey with radiation the same year his brother had the seeds. Five years ago we lost my mom to a brain tumor. After that my dad's psa was over 400 on a regular check up. His bones hurt. He has neuropathy in his feet from one of the chemo's. He has exhausted all the chemo's and is on Opdiva to treat a newly found renal cancer. It's a long journey. Take care of you both.

[Tom-36 in reply to jimsdaughter]

The journey is indeed a long one with prostate cancer, one of the slower growing cancers. My husband has neuropathy in both feet and hands as well.

[axd198]

Mre. T:

My sympathies and I agree with the other comments.

However, I am quite perplexed that after a Gleason of 4=4=8 , he was not recommended Prostate surgery (removal)......

[Tom-36 in reply to axd198]

My husband discussed various options and their side effects with his urologist when first diagnosed. At that time minimally invasive da Vinci robotic prostatectomy was not available locally, and even now it may mean a higher risk for lasting incontinence. Radical prostatectomy is major surgery with many possible side effects, so my husband elected to have the seeds implanted. I must emphasis that the choice was his.

[Bogiedog]

I would;d be interested in knowing how he is doing in general.  You mention a wheelchair and that is certainly limiting, but how do each of you feel about the future?  This place is full of people in pretty bad shape (myself included), but it's interesting to see what each of us can make out of what this disease has left us.  It's often hard to focus on what we have when each day shows us what's been taken away, but it's worthwhile to consider.

[Tom-36 in reply to Bogiedog]

Generally my husband is weakened physically but still enjoys life. He's fortunate in that he suffers little pain from the cancer, and what he does experience is controlled through medication. Although "our world has shrunk" (meaning that we no longer travel, rarely eat out at a restaurant, and our social life has become medical appointments), we enjoy each other's company, reading, watching movies on TV, and talking to family and friends who visit.

As primary caregiver I am often quite tired and have to rest when I can. I find I am doing things that I am untrained to do (I am not a nurse) but have learned to do. I do these things because I love my husband, although some are quite unpleasant. I now recognize that I need occasional in-home help and have made arrangements to have some.

We are prepared for our future as best as we can be. Neither of us is afraid of death, but neither of us is ready to die just yet. We recognize the sun will rise, birds will sing, and the tide will flow whether either of us is living or not.

None of us knows when or how our lives will end, but we have made as many arrangements as possible to make it easier for the survivor or our heirs. We have prepaid for the funerals, made our wills (and living wills, power of atty, and so on), and begun giving our children/grandchildren special things from our home to enjoy now.