I hope everyone is having a great holiday weekend.
AMG 509 is working for others, but not me. My last update was 30 days ago, and the theme was No News is Good News.
Since then, back pain and neck pain have evolved to become my constant companions. My oncologist agreed to order scans at 4 weeks instead of 8 weeks. There is no clear evidence of advancing disease in the Whole Body Bone scan or Pelvic, Abdomen, and Chest CT scans. However, PSA has jumped from 81.6 to 121.7. I wish we were measuring revenue, where a 50% increase would be cause for celebration.
I don’t know what the next step will be but suspect that Chemotherapy is the only practical option, plus targeted radiation to relieve the pain. I haven’t discussed this in-depth with my Doctors, but I will starting tomorrow.
I told my oncologist 3 weeks ago that we should be planning the next steps. In my opinion, as long as the best we could say was things were the same, then it wasn’t working well enough to think cancer wouldn’t catch on to what is happening. The disease in my skeleton appears to be too damn smart. He said he was happy with the results to date.
I have complaints about the approach of my oncologist, but there is no point in wasting energy on that at this time. I knew the risk, felt the danger approaching, and I should have pushed harder to begin to plan for what to do next.
One quick story. He volunteered to set me up with the palliative care department to discuss pain management on June 22 at our weekly visit. He prescribed TraMaDol at that time, which was not effective. He also forgot about pain management referral. My wife and I went up to NYC to celebrate our 40th wedding anniversary. She had a wonderful time. I was uncomfortable but smiled and made sure I didn’t ruin the weekend. We have many wonderful memories from the hotel and The City. I always had a New York Office and spent 30-40 nights a year at this hotel for decades. We get treated like family there and get a lot of perks when we visit.
On June 29, as we discussed pain, he brought up pain management as if it was a new topic for us. I was annoyed but silent on the subject. I then spoke to the scheduler on the afternoon of June 30 and was told that the first available appointment was July 22. I reminded her that the pain was not waiting and that I could use some assistance now. It is not the scheduler’s fault, and I was respectful. There was nothing to be gained from ruining her day.
I am also having difficulty getting an MRI scheduled through regular channels. That is out to July 19th, but I am hopeful that I will be able to improve the schedule this week.
More news to follow.
Philly
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Philly13
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I'm so sorry that BiTE didn't work for you. Have you had Jevtana+carboplatin? Can't your oncologist just prescribe opiates for the pain until you get in to see the specialists? I'm so glad you continue to make loving memories.
My oncologist has provided some pain medication prescriptions, but it has been ineffective. he started with TraMaDol, then went to 5 mg of oxycodone every 6 hours. Neither was effective. On Saturday I reached my GP and he prescribed 10mg of oxycontin Extended-release. That cocktail of Extended-release every 8 hours and IR every 4 hours has provided a good deal more relief. I am functioning reasonably well, now. Hopefully, it will last a while.
I also bought an overstuffed recliner and a new laptop. I have built myself a zero-gravity work and entertainment station. Sitting at my desk has been the source of much discomfort for a while. Now the pain has evolved and become more persistent. This setup is much better.
This week will be eventful with a lot of decisions. I wanted the clinical trial to work and I let the dream get in the way of reality. I will be more proactive moving forward. I should have been moving in another direction a month ago, at least.
Around the same time you were on the AMG 509 trial, I participated in the ARV 110 trial. Same as you I was anticipating good results, but after 8 weeks I was told it was not working for me and I was taken off the trial. That was over a month or so ago.
My plan B has been to wait for another trial to begin. I am having initial blood work and scans tomorrow at Weill Cornell as part of starting this new trial with Tagawa. I did not make this decision to pursue yet another trial, before going with one of several available SOC options, on my own. I had reached out to 3 other Oncologists' second opinions, and they all agreed that I should go with this trial. So I am. If it doesn't work, my next plan B will probably be either chemo or BAT.
As for pain management, I definitely feel your frustration about not being able to get more timely scheduling. My MO happens to specialize in palliative care, and addressed this early on. He got me a medical marijuana card to get access to a designated dispensary here in NJ. I have done accupuncture, which I have found to be somewhat effective, and my insurance covered 30 visits
Do you possibly have a designated nurse navigator who may be able to help you and pull some strings for your scheduling? I have one at CINJ, who is great and helped me multiple times.
I also got the medical marijuana card from the palliative care team. The topical creams and salves are effective for me. I do also use the tincture for sleep help. I don't like vapes or smoke products very much. If I was a new patient it would have been an even longer time to get help with pain meds.
I don't have confirmation the pain is from metastatic disease yet. I don't know it for a fact but I know it is true. It would be a big surprise if there is another issue. I think that would be very bad because I have a lot of disease in my skeleton and don't think a surgical or medical solution is practical.
Have you had a recent dexa bone density scan ? My pains are from djd and osteopenia not metzs. In the beginning I thought every new pain could be a met. That’s a horror way to think . Waiting for results is a bitch ..
I had a dexa scan 2+ years ago. I inquired about getting another one in the spring. He was not in favor. I think treatment would not have been allowed if bone density was poor. I am still in the trial even though I speak of it mostly in the past tense. I will get an MRI this Friday and we will go from there.
As I anticipated, it has been an eventful time. Radiation Therapy has been planned for the 10 fractions on T12 starting the first week of August, after I return from a week at the beach with my family. 2 children, son-in-law, girlfriend, and granddaughter. I am very excited about next week.
I will be getting a bone and tissue biopsy on Friday, which Amgen has authorized. I have developed a small nodule on the adrenal gland above the right kidney. They will keep some of the adrenal tissue at Jefferson to analyze it. Otherwise, Amgen would have all of the information. I am not sure whether they would share the findings, but my impression is they probably wouldn't. I think the analysis of my first soft tissue evidence of metastasis could provide useful clues for future treatment. There is no confirmation yet the adrenal gland is malignant, but it is likely.
I have developed a cocktail of pain medication and steroids that is working well. In fact, I haven't felt this good in a long time. I have been improving the tools and comfort of my zero gravity work and entertainment station steadily. I am working more effectively and more relaxed. Since I grew up in the "walk it off" era of pain management, it is very interesting to observe now, how bloody stupid that is. I dreaded sitting at my desk because that caused pain in my back after a while. The time I could stay at my desk was getting shorter every day. The time I spent thinking about avoiding my desk and computer got longer every day.
At this time, the options to consider after radiation are, SOC chemotherapy, P300 trial, and a Cornell Weill PSMA clinical trial. The Doc at Jeff wants to wait until after the RT to drill down through the risks and rewards with me.
More to follow.
Philly
“ He forgot about pain management“ ….wtf? that’s crazy and lazy on his part . So you suffer . I’m sorry Philly for the bs. I am fascinated by your NYC 30-40 nights for decades. Dam that sounds fun. Hang in there baby. Take care
He is a brilliant researcher and a good guy. Forgive the sports metaphor, but my feeling is he is not a great game-day tactician. A cliche that most attribute to Mike Tyson, "Everyone has a plan until you get punched in the mouth." I got punched in the mouth, but I know the deal and feel it is my responsibility to communicate better.
I have interacted with a few institutions as a caretaker before becoming the warrior subject of the battle. Doctors are trained to react, and rarely think tactically or make contingency plans. In addition, I think that there is a significant difference in follow-through at the wealthiest institutions. I have one foot at the University of Pennsylvania and insist on using them for tests because I love the radiation oncologist there and there is a satellite facility 10 minutes from my house. The staff is much more professional to deal with there than it is at Jefferson. On the other hand, Jefferson has a bigger inventory of very clinical trials, that are relevant to prostate cancer.
Hoping for the best asked about a nurse navigator. I do not have one at Jefferson, but I did when I was taking care of my brother. The clinical trial administrator acted like one while I was in the clinical trial. Indeed, I am treated like a VIP since I started the AMG 509 program.
I agree about the drs training . Thats a great Tyson quote . If you saw his recent tv special he said he would tell a young man “ It’s going to hurt” please keep us on progress . Keep rolling amigo ! ⛹🏽♂️
We all want and need good news. However, if news isn’t what you would have hoped, please know that this community of members holds you in their hands and hearts. As you are aware, it can only be one day at a time for you and for all that are battling this terrible disease. Hope for new treatments and a miracle. I just hope good news comes your way. 🤞🤞🤞🤞🤞God Bless You.
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