I have an aggressive PCa with a monthly doubling PSA of 47 plus ( pelvic mets plus lower lumbar spine and one proximal femur). I have pain and am on opiates so I may be fuzzy!
My MO and I talked a couple of weeks ago and suspended Xofigo due to monthly doubling PSA and the MO promised a decision on new therapy but "I need a little time". After 2 weeks of not hearing back, I grow worried. I call and it turns out that the soonest I can get any appointment is another month. If a decision is reached at that meeting, it will mean I will have been at least 7 weeks with no therapy at all (except Lupron but I am mCRPC!).
I wonder if such a delay is reasonable or normal. I cannot help but feel that my highly respected doctor has simply has thrown me overboard due to my age and prognosis.
What do you think? Has any one had a similar experience?
History: Age 73. It is 2.5 years since my diagnosis with Stage 4 PCa. I had successful treatment with docetaxel plus lupron which reduced my PSA to .5 for 10 months before it began to rise fast. I failed at Abiraterone, and then Xofigo which was just put on hold after 3 infusions ( PSA more than doubled twice with tumor spreading as per MRIs). I continue on Lupron and am mCRPC.
Thanks for any input/shared experience.
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baltha
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I have had one bone biopsy which failed to get any cancerous material.
That biopsy did, however, cause an explosion of nerve pain that went on for months.
Though I cannot find any support for my opinion, but I believe this failed biopsy activated web of nerve pain led to a lot of inflammation - and soon enough a new, a far more aggressive tumor emerged in the femur.
Thanks for input and thanks to all.
I don't think you should have to wait 7 weeks to start a new treatment with progression happening unless it's your decision. I doubt I'd accept that. I would be looking for another Oncologist who can start you sooner on whatever you decide to do.
As far as treatments go, I think second-line chemotherapy Cabazitexel would be a good choice. The side effects seem to be more tolerable than Docetaxel for many so I think it is worth a try. You may get some pain relief fairly quickly after you start.
You can always quit any time if it doesn't work or you can't tolerate the side effects. Wishing you the best with your decision.
Also, have you done genetic sequencing to check for treatable mutations such as BRCA or ATM? Would be worth doing if you haven't already.
IMHO, way to long to wait for a decision. My neuroendocrine cancer is progressing, and I'm only going three weeks between the last failed treatment and the start of the next on. It could have been two weeks if I wanted to retry carboplatin but I asked for an extra week to recover and consult with Dana Farber.
I was just at Dana Farber two days ago. Dr. Beltran signed me up on a waiting list for a clinical trial BEFORE my appointment. While waiting for the trial we'll be starting a new chemo that was only approved last August. It's already been approved by the insurance company and the box with the drugs in it has already arrived at my oncologist's office, and will be infused on Monday. This is how fast things can move when doctors have a sense of urgency. I've never had to speed things up, only occasionally asked for a brief break to catch my breath.
It should be noted that both the trial and the new chemo drug have been on my radar since December.
I agree that things should have that kind of sense of urgency.
When I was becoming Castrate Resistant, my doctor called me as soon as he saw how much my PSA blood test had gone up. My appointment would be in another 2 days. He knew I wanted to do Zytiga as my next treatment so he had the Zytiga prescription already written and had scheduled the pharmacist to be there for my appointment to go over everything. I left the appointment with my first bottle of Zytiga. That's how it should be.
Urgency should be somewhat proportional to the aggressiveness of the cancer. If a routine PSA blood test comes back at 5 in an otherwise healthy male, they can take their time looking for the best surgeon/radiologist that won't knick the wrong nerve and mess up the quality of what should be a long remaining life. When things shoot up quickly, doing something good now is probably more important than doing something great weeks later. I'm not sure my cancer would give me two months right now.
I agree that even 2 weeks is too long.After a psa rise to 2.18 from 0.76 in 80 days after a 6 month Eligard shot I was given a 1 month Luoron. Psa dropoed to 1.76 but MO prepped me for Nubeqa. That started30 days later but psa had dropped slightly to 1.72 the day befire starting the pills Tomorrow, after13 days on Nubeqa will have the psa test again and see MO Wednesday.
Time should be quock and short unless mo is NG or has given up on you. In either caserun dmfast to a new MO.
That Dr. Beltran is amazing and we who see her are so lucky. She has called my brother on a Saturday morning at 7:30 and on an evening night at 9:30 over any concerns. She is always available to us and gets things moving ASAP. Unfortunately not all MO‘s I like her
Where you live, do you have other options for MO's? Also in the age of covid, it seems people are reaching out to MO's far away with success.
Yes had all six treatments of oxfigo and my PSA went from 54 to 844 Dr wants to wait six weeks for all of the oxfigo is out of my system then going to do a complete body and bone scan after fourth infusion of oxfigo develop pain in my stomach muscles all around my bellybutton
Hi I am not sure if my response will be helpful as I was on a different medication regime than you are on nowI took Zytiga and prednisone and hormone injections for two years ending last year and so far everything is perfectly normal.
I was concerned about going off the Lupron because I know it blocks the growth of cancer cells however, so far so good.
We waited for several months to wash out the xtandi from Bill’s system before starting something new. He has some growing bones Mets but is not in pain. He is just now starting a new clinical trial. But has done numerous lines of treatment already. I think the doctor didn’t want to play the 3rd round of chemo card and impact Quality of Life while Bill was generally symptom free. Sometimes the living occurs during the sweet spots in between treatments.
I would call your MO and let him/her know that you are extremely dissatisfied with the wait time. I would insist on seeing him/her much sooner than a month. The squeaky wheel gets the grease. Sometimes you just have to advocate for yourself and be a bit aggressive even though that may not be your personality. We are talking about life decisions here with a quickly rising PSA
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How Long Is A Long Time?
Experience, thus far with Lupron and Abiraterone
Delay date for Lupron injection 
Is long-term remission even possible with my stats?
