University of Utah Huntsman Institute TAK-700 Clinical trial

135

Comments

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    Excellent

    Wonderful to read that you are doing well. 

    Will toast to your success

    Best to you

    H

     

     

  • Old Salt
    Old Salt Member Posts: 936 Member
    How about some toffee for us all?

    Great to read that there are no major complications up to this point. You deserve it because you did put a lot of thought and effort getting into this trial.

    Thanks for the update.

    As an aside, do you bring toffee to the Huntsman staff to keep them focussed and happy?

  • VascodaGama
    VascodaGama Member Posts: 3,515 Member
    ... living pretty comfortably,

    I am really happy for your bravery and success. I want to thank you for continuing reporting on your developments and results. This thread will help the many confronting similar situations. Those following your story should read the above posts taking into consideration the dates of the posts for consistency on the discussions.

    Congratulations for still a lower PSA. You have enter into the remission level. This is attributed to your case because you got your prostate in place., however, such doesn't mean that you are cancer free. I hope the scans are trustful and provide a better guess on the remission.
    I would like to know about the DEXA results. What was your base data? Any apparent osteopenia?

    As discussed before I am against the pills (Adderal) you've start taking, suggesting you to give preferences of a change in life style (lunch naps and less lifting of the "butter blocks", and brainy exercises similar to Sudoku may substitute the pill in mental affinity). But your team of doctors has shown to be highly proficient on your course and medical needs, nailing all the aspects till today. Just be careful and continue checking the lipids and all other blood panels, in particular those related to kidney function (clearance in urine 24H test).

    Best,

    VG

  • foamhand
    foamhand Member Posts: 93
    The One Year Mark...

    Latest trip to Huntsman Cancer Institute for one year progress assessment. New CT and bone scans. results are as follows:

    IMAGING:  (Obtained 07/11/2017)

    1.  Abdomen/pelvis CT with contrast:  Impression shows improvement in the previously seen adenopathy. No new nodes. Significant decrease in the size of the prostate gland. Liver cysts with new tiny hypodensities too small to characterize. 1.2 cm sclerotic lesion within the right femur.

    2.  Whole body bone scan:  Impression shows new areas of increased MDP uptake in the right posterior ninth and left sixth rib concerning for disease progression.

     

    These lab reports and scan reports were reviewed with patient. Scans also independently reviewed in the clinic.

     

    ASSESSMENT: (foamhand) a 56-year-old male, with metastatic prostate cancer.  Prostate biopsy performed on 05/23/2016 showed bilateral adenocarcinoma, Gleason 4+5 equals 9 disease.  A prostate MRI performed on 05/17/2016 showed metastatic bilateral iliac lymphadenopathy and right femoral osseous metastatic lesion.  Bicalutamide started on 06/07/2016. Bicalutamide therapy discontinued on 07/10/2016.  Treated with SWOG 1216 protocol treatment, randomized to ADT plus TAK-700 arm, beginning 07/11/2016.    

     

    Today, in addition to history of hormone sensitive metastatic adenocarcinoma of the prostate, the patient has the following clinical manifestations:  Intermittent fatigue, intermittent reflux, intermittent shortness of breath with exertion, intermittent insomnia, intermittent flu-like symptoms, intermittent constipation, intermittent pain (primarily polyarthralgias, pelvis and neck), intermittent nocturia and intermittent cramping in the calves at night.  All symptoms are longstanding and stable, except mildly palpable left axillary lymph node.  We discussed that he continue to monitor for enlargement.  For further details regarding treatment-related adverse events and attributions, please see documentation in the medical record dated 07/11/2017.  We reviewed the PSA, which is stable at 0.6 ng/mL.  We discussed his restaging scans from yesterday showing improved lymphadenopathy, but new osseous rib lesions.  We discussed that rib lesions could represent flare response, especially with PSA decreasing and lymph node improvement.   We reviewed the PSA, which is stable at 0.6 ng/mL. We discussed plan to repeat bone scan in 3 months.

     

    When i first met with Dr. Agarwal, he hadn't seen the bone scan yet so when I read about the ribs I got worried and called. They are pretty sure it is a "flare effect" but I will do another bone scan in October. I am very happy with all the shrinkage of the soft tissue and no soft tissue spread. Dr. Agarwal said we will stay the course until my PSA rises to a 3. Then we will do a short course of Chemo as he said it works very well on the early resistant cells. Hopefully this is still a long way off. My lipids all show good and standard CBC only has a few catagories out of range and they are only a little low or high, nothing of a real concern.

     

    We did make the zoo and Lagoon amusement park in Salt Lake City this trip so overall it was a good trip.

     

    Plowing along with hope and positive attitude.

     

    foamhand

     
  • VascodaGama
    VascodaGama Member Posts: 3,515 Member
    Plowing along with hope

    I am with you. I read your report and my concern goes to the tiny liver cysts. Both doctors gave an opinion on the ribs justifying the findings as "flares" without significance. I wonder if they know about your job lifting 55 lb. butter blocks. The lesions at the ribs (6th and 9th close to shoulders) could have something to do with your work and behind the scan findings. The 1.2 cm sclerotic lesion at the right femur was there from the beginning. You could inquire if it has decreased when comparing with the previous scan.

    This is your first anniversary of the successful therapy with a good outcome in shrinking metastases that are confirmed by a decreasing PSA from 4.6 to 0.6 ng/ml. According to your report, Agarwal has establish the threshold PSA=3.0 ng/ml as the end of the treatment. However, he also commented on the possibility of adding chemo to the protocol, and my lay opinion is that you should give it a try. The present ADT will not be effective forever. Chemo will give you the opportunity of eliminating the bandit. In any case, adding chemo means adding side effects to the existing ones. You need to be prepared for the influence it may have in your professional life.

    The cysts at the liver must be rechecked. PCa in the liver would not be a favorable finding and the CT is not much reliable when detecting small size tumours. I believe that Dr. Agarwal can include in the trial a PET scan with 18F choline, which would provide a more precise conclusion on the disease progression/regression. The PSA of 0.6 is still within the parameters for detection so that you could comment on the exam in your next meeting/conversation.

    Best wishes for better results and enjoyment (I would like to presence one day one of those famous speed races at the lake).

    VG

  • foamhand
    foamhand Member Posts: 93
    edited July 2017 #47
    No changes in plan

    I submitted my questions to Dr. Agarwal about the liver and my work requirments. I missed his return call but he did leave a message stating that due to my excellent response to the therapy he saw no need to change anything at this time. I hope to discuss things further with him on my October visit.

    foamhand

  • foamhand
    foamhand Member Posts: 93
    PSA down some more...

    6 week interval blood draw shows PSA down from 0.6 to 0.5. Maybe it isn't done dropping yet. Fingers crossed.

    foamhand.

     

     

  • foamhand
    foamhand Member Posts: 93
    October Checkup / Bone Scan

    Well, good news and some concerning news. The good news, My Oct 9th follow up bone scan showed no new bone metastasis, supporting Dr. Agarwal's belief that the later bone mets were flare effect. The concerning thing to me is that now I've learned there is a small lesion on my right Tibia. It seems there was more bone spread than I was originally aware of. I am wondering if the bone scans are somewhat of an imperfect tool or if there could be that much difference between radiologists interpretations of scans? 

    The APRN under Dr. Agarwal still assures me I'm doing great and the only pain I have is in areas that so far show free of cancer, so probably side effect related.

    Still doing well mentally as what else can I do but continue on as positively as I can. Worry or fretting doesn't help and would most likely hurt my overall health.

    My best to all, hope everyone is having some success.

    foamhand.

  • VascodaGama
    VascodaGama Member Posts: 3,515 Member
    Like a Soccer player

    Hi again,

    I believe in both your comments regarding the CT capabilities, in both the machine  and the interpretation of the findings. It is always better to get second opinions. In any case if such hidden metastases exist the treatment would not be different from what you do now. Resent radiopharmaceuticals have shown better and more accurate results in PET scans identifying cancer lessons in bone.

    Lesions at the tibia are common in particular in Soccer players. It could be from a past occurrence you do not recall. It is good to have realistic details but at it's own timing. Be aware that ADT can lead you to worry about unimportant trivials.

    Best wishes for continuing success.

    VG

  • Old Salt
    Old Salt Member Posts: 936 Member
    foamhand said:

    October Checkup / Bone Scan

    Well, good news and some concerning news. The good news, My Oct 9th follow up bone scan showed no new bone metastasis, supporting Dr. Agarwal's belief that the later bone mets were flare effect. The concerning thing to me is that now I've learned there is a small lesion on my right Tibia. It seems there was more bone spread than I was originally aware of. I am wondering if the bone scans are somewhat of an imperfect tool or if there could be that much difference between radiologists interpretations of scans? 

    The APRN under Dr. Agarwal still assures me I'm doing great and the only pain I have is in areas that so far show free of cancer, so probably side effect related.

    Still doing well mentally as what else can I do but continue on as positively as I can. Worry or fretting doesn't help and would most likely hurt my overall health.

    My best to all, hope everyone is having some success.

    foamhand.

    Thanks

    Thanks again for reporting back to us. More importantly, it was good to read that Dr A thinks that you are doing well. 

  • foamhand
    foamhand Member Posts: 93
    Latest updates...

    Hello all, Had 2 checkups since my last post. My general blood work has been fine and 'normal for me"  they said. A little anemia but not very severe. My PSA has risen a little. I am now at a 0.9 from a 0.5 in Oct 2017. I had a 6 week interim check in Feb 2018 where it was 0.7 but that was at a different lab. I was told that it is normal to have small up and down fluctuations at this point. No med changes yet. Still Lupron shot every 3 mos and 300mg Tak-700 2X daily. Still taking 10mg Adderall for fatigue and Effexor 75mg for hot flashes.

    The APRN under Dr. Agarwal said at this point, I have until my PSA hits 2.6 (or ct / bone scans show spread) before we go off this trial and do something else. Hopefully at the rate my PSA is rising, this will mean several more years on this clinical trial.

    Still working and doing good. Hope everyone is having personal success as well.

    All the Best.  Foamhand.

  • Old Salt
    Old Salt Member Posts: 936 Member
    Good to hear from you again

    and especiallty for the positive news from the trial.

  • VascodaGama
    VascodaGama Member Posts: 3,515 Member
    Thresholds

    0.9 is far from the 2.6 threshold. I wonder what would be your next sequential in years to come. You will be older so that other aging occurrences are expected. You need to count on that too.

    Congratulations on the success this trial as brought you, since 2016.

    Best,

    VG

  • foamhand
    foamhand Member Posts: 93

    Thresholds

    0.9 is far from the 2.6 threshold. I wonder what would be your next sequential in years to come. You will be older so that other aging occurrences are expected. You need to count on that too.

    Congratulations on the success this trial as brought you, since 2016.

    Best,

    VG

    Next Step...

    Dr Agarwal has a very interesting way of explaining things. He describes the Pca cells as colored mice invading a home...lol. There are green mice...(Pca feeding from the testosterone in the testes), blue mice...(Pca feeding from the testosterone from other places, adrenal glands, prostate etc.) And red mice...the stubborn Pca that mutates and workes its way around the HT therapy.

    He said we are doing an excellent job of taking care of the green and blue mice right now. Someday when my PSA rises above threshold limit, it will be due to the red mice and then we will go off this trial and do a short course of Chemo. He said it works very well on the red mice after a long period of being on HT. So basically that will be our next step. Then he will decide if there is a new clinical trial for me or to keep on with chemo until a new trial comes up.

    foamhand

  • VascodaGama
    VascodaGama Member Posts: 3,515 Member
    Mice in action

    Interesting way of seeing things. I wonder what is his PSA threshold to identify the red mice in action. The typical reference for refractory is three continuous rises in PSA tests done 3 months apart, but some oncologists establish levels to each patient depending on their initial status and/or PSAdt.

    I hope that the red mice leaves you peace.

    VG

  • Old Salt
    Old Salt Member Posts: 936 Member
    Nice explanation

    by the good doctor A. 

    I hope that your next PSA will still be way below the action limit.

  • foamhand
    foamhand Member Posts: 93
    2.6 is my established threshold.

    I was told that my threshold is determined by how low I initially dropped and something called the nadir(?) so 2.6 is my cutoff point. I don't completely understand how it's calculated, I trust Dr. A to make these decisions.

     foamhand

  • Old Salt
    Old Salt Member Posts: 936 Member
    Yes

    The Phoenix definition for biochemical failure after radiation therapy = nadir + 2. The nadir is defined as the lowest PSA value during treatment. But many oncologists want to see at least two PSA results that are over nadir + 2 prior to taking action to make sure the higher PSA isn't due to a 'bounce'.

    This Phoenix definition is biologically arbitrary IMHO, but it is commonly used by lack of something better.

  • foamhand
    foamhand Member Posts: 93
    2 years of success

    Hello all, just returned from my latest checkup and second year of CT / Bone scans. Everything shows stable to improved. My 2 pelvic lymph nodes have shrunk completely back to normal size, My rib lesion on the 10th rib has shrunk and all others have not grown. no new metastatsis anywhere else. PSA at .8, down from .9 in April. No other cancers spotted anywhere else that was scanned.  Looks like the TAK 700-Lupron combo is working so far. I understand that the median time for HT success is 3 years so I hope I'm reporting the same good news in 2 more years. 

    Hope everyone is having great success of their own. Best wishes.

    foamhand.

     

  • VascodaGama
    VascodaGama Member Posts: 3,515 Member
    edited July 2018 #61
    I am glad for the news

    The results are great and I hope that the combo continues its action on the cancer. You need to be vigilant on the side effects cause of the drugs in terms of its influences in other body functions. Liver is usually affected by CYP17A1 inhibitors (orteronel-TAK700, abiraterone-Zytiga, etc). I wonder if they are checking the lipids each time thay draw blood for the PSA.

    I am glad of seeing things going in your favor and want to read more of your posts reporting successes.

    Pulling for you. Please keep us posted.

    VGama