I was 41 when the symptoms started, 41! Now, 19 months later I am or have become hormone refractory. My Oncologist wants me to start Ketaconazole (1200mg daily and hydrocortisone at 20mg daily). I will continue to take a Lupron injections. I am going to get a second opinion on Monday to determine if we should just go right to Chemo? I try to share the experience via my blog and started a foundation to raise money for research and to help raise awareness - Faith, Love, Hope, Win Foundation.
I'll try to post updates frequently.... no offense but most of you could be my dad or grandfather. It's very strange.....but life goes on, for my wife, for my 10 year old son.
It's June 2007, 28 months post diagnosis and my PSA is 18.7 ng/ml. While on the surface this may seem high to some of you for me I rather content with 18. Of course I'd like the number to be lower, but it is what it is.
Between May 2006 and September of 2006 my PSA climbed from 11 to 85. I stopped Casodex in May of 2006 because the number had risen from > 1 in January 2006 to 11. I am still on 4 month Lupron shots, but started Ketokonizole and Hydrocortisone in September of 2006. My PSA began to fall immediately and hit a low of 16.25 in May 2007. Bones scans from March 2007 show stability, my spine remains clear, while my rib, femur and hips show no new activity.
Life has become a series of 28 day periods, this is the time between PSA tests and Zometa treatments. The days leading up to and following the test are stressful for my wife and I, but life goes on. We focus on the three weeks in between.
I encourage you that are young and newly diagnosed to be positive. After the initial shock wears off don't be negative, don't give up hope. You are not alone.
It's January 2008, I am passing through my three year anniversaries, beginning my fourth year of the battle. Not a lot to update from June of 2007; I still live.
After 16 months on HDK my PSA stared to climb earlier this year. I stopped taking HDK and switched to Nilandron in February. After my update on Monday (April 21, 2008) my PSA has continued to rise.
Though the rise is slow [PSA now 38] and the doubling time slow [7 months] I have decide to take an aggressive course and begin chemo. I had hoped to start in the next few weeks but the clinical trial I am going to enter requires me to be off Nilandron for 6 weeks.
So it looks like June 9th, or so, will be "C" Day. I'll try to provide more timely updates but they can always be found at my blog, link above.
The information below is only my individual experience. Like everything else with the dreaded disease, everyone reacts differently!
Treatment day is long and tiring. Typical waiting, testing, waiting, meeting with doctor, waiting, treatment etc. I always set up my appointments for first thing in the morning, this means treatment begins around 10-11:00am - By 2pm I'm back home and usually need a 30 minute nap to recover from Benadryl. I try to work (email etc.) for a few hours, have dinner and relax. Sleep is nearly non-existent on treatment nights due to the amount of Dexamethasone in my system.
Week 1 is tiring, and I have experienced some lack of concentration, fatigue etc. I have also experienced metallic tongue, some weeks better than others. Ice chips during treatment didn't do much, lemon drops help as do other 'tart' foods. Lemonade etc. I try to avoid hot liquids, they seem to aggravate the issue.
Week two I am at least 95% by the 7th day post treatment and certainly 100% by day 10 or so. Week three I have found myself 100% - I have not experienced a loss of appetite or hair! My red and white blood counts drop considerably but have recovered by the third week in each case.
Another item to note is I am one of the younger ones fighting this disease, I am currently 45 and have been in this fight for three and a half years now. I am VERY active and eat a mostly Mediterranean diet. Again, no one will react the same, this is just my personal experience with Taxotere.
I had my 11th Chemo treatment today as part of the Astrasentan trial. My PSA was down to 29.58, from 38.99 three weeks prior!! 2009 has started off great!
Tomorrow I am off the Houston to visit the great people at MD Anderson.
Over the past 4+ years I have tried; Casodex/Lupron, HDK/Lupron, Niladron/ Lupron and most recently Prednisone/Astrasentan/Taxotere.
Since finishing chemo on January 26th my PSA has remained stable, though still in the mid-30's. I am only on Lupron and Astrasentan (or placebo). I am currently in no pain, just the usual minor aches and pains from the bone metastases.
I am however still experiencing joint pain from the Prednisone withdrawal and will discuss that further in Houston.
We are hoping to find a few clinical trials to choose from but if not we plan to come back to KC and use plan B; diethylstilboestrol (DES) or Estradiol patches.
That's all for now - peace be with you all!
Well I guess I'll start by saying there have been a few changes since April.
First, my PSA rose each month until it reached 97 last month. However, as always I was in almost no pain, an occasional minor ache now and again but nothing that a few Advil didn't help alleviate.
My wife and I discussed with my Onc and decided to try going back on Keto and HC again. I tolerated it very well for 16 months (Sept 07 to Feb 08) so it was worth a try. So far so good because on Monday my PSA had fallen to 88 after 4 weeks. We have also been monitoring my alkaline phosphate levels (normal) and CTC [circulating tumor cells] which was zero both in May and July.
Our visit to Houston was great, a much better experience than back in 2005. I went on Glucosamine and most of the joint pain is gone, I think the Hydrocorizone took care of the rest.
That's it for now, you can follow my blog and I'll try to provide more timely updates here.
Since my last update I have had the following treatments:
I tried High Dose Ketoconzole + HC in August of 2009. That reduced my PSA to the 30's and bounced around there until March on 2010. At that point it began to rise again and I switched to diethylstilboestrol (DES).
Three months into DES I began to have severe bone pain in my hips and both femurs. I had to take Oxycodone for 7-10 days and then had fourteen radiation treatments. The pain subsided within three days and the pain pills were halted. My PSA continued to decrease and reached a several year low in September of 2010 at 28.0
This didn't last too long and the PSA started rising again each month. When it reached 82.0 in December I switched from DES to High Dose Casodex and immediately began looking for a clinical trial and began gaining approval for Provenge.
Our highest interest lie in a Phase II drug, XL-184 and Abiraterone. I do not qualify for the former so after several weeks worth of work, I will begin Abiraterone the last week of January, on my 48th birthday!
I continue to remain pain free except for the occasional need for a few Advil. I also remain on Lupron and Zometa monthly.
In January I began traveling to Atlanta as part of a clinical trial for Abiraterone. To date I have had three PSA tests in Atlanta and each time I have had a PSA five days later as part of my routine, monthly Oncologist visit in Kansas City.
The differences in the tests are reflected in the table below:
|January 27, 2011||349.0||200.0|
|February 24, 2011||356.0||250.0|
|March 24, 2011||403.0||293.0|
As you can see, not only does the overall number vary greatly, the percentage of change is completely different. At this point in time, we don't have much choice but to accept it.
Looking only at Atlanta the encouraging aspect is the trend line is slowing. January to February my PSA increased by 25% month over month. February to March my PSA increased 17%.
Looking at my Kansas City PSA scores the January to February, the increase was only 2%. February to March my PSA went up 13%.
More information and my thoughts are at my blog.
The good news is my physical symptoms continue to decrease. No Advil, no aches or pains for the past two weeks!! We are going to listen to the doctor in Atlanta and give Abby at least six months.
The details of David's journey through the year at his blog. Here is what he has to say about his participation in an important trial - we should all be very grateful for brave pioneers like David who 'break the path' for those who follow:
After 12 weeks on Cabozantinib (XL 184) things are going OK.
I started the 25mg trial on August 30th. During the first 6 weeks I didn't notice any side effects, however I did notice an increase in pain in several locations. On October 11 I had the first required follow up bone and CT scans. The results of those scans showed a 20% improvement in the overall state of the bone mets. While good, the trial was looking for 30% or greater.
On November 1st my dose was increased to 125mg (per the trial, I was concerned about that high of a dose). [side note I was at the time on both 2- 10mg Oxycontin and 6-8 325mg Oxycodone daily]. The increase in the trial drug coupled with the constant struggle with constipation from the pain meds, made for an interesting beginning on the month.
After trying multiple OTC laxatives I finally got a prescription variety that stared working right away. Also, after six days on the higher dose of the trial meds, the nausea was unbearable at times. The doctor suggested I stop taking the medication for three days.
With both the nausea and the constipation under control I started the trial meds again on November 10th at a lower 75mg dose.
The following twelve days were spent readjusting the pain meds, laxatives etc and I was able to go back to Boston for my November 21st scans and doctor appointment on the 22nd. At the appointment on the 22nd the doctor showed me a side by side comparison of the October 11th and the November 21st bone scans. Even with my untrained eyes I could see a difference, and it was encouraging! There were a few spots that had cleared up and most had noticeable reductions.
75mg may still be too high, I still have occasional nausea issues. The best news is I have not had Oxycodone in almost 48 hours. Sleep is getting better but there are still some nights that are rough.
David passed away in early October 2012. He kept the details of his journey right to the end on his blog. The last post by his wife Mary was on October 2, 2012 when he moved to Kansas City Hospice House for his last days.