On Tuesday I was up at 4:15am and out the door by 4:40am in order to get to Boston, MA for my 1:00pm appointment.
There is nothing eventful to report about the travel, a connection in Atlanta, on time arrival, 45 minutes on the bus/subway and I promptly walked into the doctor’s office.
Due to the nature of the clinical trial, the vampires required 9 vials of blood and a urine sample. The results of the blood test are required before the trial drug can be released. The lab was able to turn the blood test around in an hour. During that time, I met with the Nurse Practitioner and reviewed the blood test, CT and bone scan from August 2nd. There were no surprises in the blood work and CT scan; PSA was 440 (expected) and CT showed swollen lymph nodes in my lower abdomen (also known).
The bone scan on the other hand was, for the lack of a better term, frightening. I have seen and studied my bone scans since I had my first scan in February of 2005. This scan showed extensive areas of new tumors where there have never been tumors before. I was not surprised, with my PSA level being as high as it is for so long, what I saw was somewhat expected. That being said, seeing the image on the screen. actually looking at the cancerous tumors in black and white and acknowleging the fact that you are looking at yourself, it was rather shocking and a bit difficult to quickly accept.
The highlights, or low lights in this case, are as follows:
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– Extensive areas in upper to lower mid spine (much more than before)
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– Left lower femur shows a rather large new spot
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– Right shoulder and collar bone show new areas of growth
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– Upper right ribs show quite a bit of new growth
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– Several small areas on the vertebrae between shoulders and base of skull.
These were the most concerning to me.
I ask you to let that sink in for a minute and perhaps re-read it.
The good news is that several minutes after reviewing the scan, the clinical trial nurse brought in my first 21 pills for the clinical trial drug, Cabozatinib or XL-184. The trial I am enrolled in is the third Phase II trial of the drug. The purpose of this phase of the trial is to gauge the effectiveness responsiveness) of dosages. My dosage is 25mg. Aside from changes in the physical aches and pains I won’t know if the drug is working until new scans are taken on October 11th.
After leaving the hospital I walked around the neighborhood (Beacon Hill) briefly before heading back to the airport. I wish I had more time and will try to make a point to check out more of the neighborhood on future visits. My friend Jason was in town at the same time but was leaving a bit earlier than me. We had discussed trying to meet my for dinner but he called to say he was running late and was barely going to make his flight. An hour later, after going through security and eating something I was walking around the terminal killing time. Suddenly I felt a hand on my shoulder was quite shocked to turn around and see him standing there smiling! What a great way to finish a long and stressful trip! Jason – thank you for being there and being such a wonderful friend. We were brought into each other’s lives through fate and a hat, destiny can be a beautiful thing! When you look at the photo of Jason and myself, it’s hard to believe all of this is going on inside me. The irony of my life!
It’s Prostate Cancer Awareness month so please support the cause. You can do so in a number of ways; write your elected official and ask them to continue funding the much needed research, change your porch light to blue, Support any number of PC group, Encourage a loved one, friend or acquaintance to get tested. Most importantly, pray for all the men that are currently fighting and suffering from this dreadful disease!
best luck to you, many great moments, long years and lower PSA readings to come !
your blog is very valuable
regards from Poland
Praying for you man.
Praying for an amazing resolution of that bone scan by xl184. I am amazed that you are able to do Boston in one day all the way from Kansas.
Dan J
My loved one who has late stage prostate cancer with metastisis to the bone (head to foot every bone) is just finishing week 12 on xl184. Started at 100mg, had to reduce to 60mg because of SEVERE FATIGUE. At the six week mark we had significant reduction of cancer in the bone scan. Still bad fatigue, got news that the drug was showing to be just as effective at the next lower dose of 39.7mg (I have no idea why the strange dosage) so at the begining of week seven we dropped dosage. He felt great at week nine, mild fatigue and unusual taste bud changes, not loss of taste, change of taste. Now ready for week twelve scans this week, fatigue has gotten worse again, apetite comes and goes, slow weight loss (about two or three pounds a week). One lower dosage available to us, I suspect we’ll be switching. All in all, our experience with this drug has been remarkable by comparison to all the other things we’ve tried and failed. Best wishes on your journey.
My husband was accepted into this trial at DFCI in March but mets to spine and sinal cord compression required immediate surgery, unfortunately d/t prior radiation to the spine the would did not heal and he had a spinal fluid leak wich required a 2nd surgery to repair, all this after all chemo options failed.He had high hopes for XL 184 as prior to surgery his psa was more than doubling every 3 weeks. The complications from PC and surgery caused his kidneys to fail and he passed in April at 62 years old. Please do not get discouraged, in his 8 years battle the research and new treatments at DFCI gave him time and quality of life to enjoy one son’s wedding, our 40th anniversary and a first grandchild. We pray for all the men and families affected by PC and wish you all best on this clinical trial.