From University of Utah / Huntsman Institute to Local Standard of Care

foamhand
foamhand Member Posts: 93
edited January 2021 in Prostate Cancer #1

I have changed the title of this thread as I am now going to be getting treated locally in my hometown and no clinical trials at Huntsman are slated for me in the near future. If / when I start a new trial, I will post it under a new thread. For now, I will be getting local "Standard of Care" treatment in my hometown. My classification seems to be more local / regional metastasis rather than distant spread. It looks like the fight is still on for many more years of life after my CT scan today, so let the fight resume.

 

Comments

  • foamhand
    foamhand Member Posts: 93
    Clinical Trials on Hold...

    My right hip cancer lesion has become a surgery issue. I scored a 9 on the fracture screening at my orthopedic Dr. giving me a 33% chance of fracture now. Surgery is slated for mid January to have rod and screws installed. Secondly, I just spoke with Dr. A at Huntsman and it looks like the end of the road for hormone therapy and I am now refractory. He wants me to have both chemotherapy and radiation as soon as possible after the hip surgery. I will see him in April after everything else is done. He may have another immunotherapy trial for me by then. The only trials available now require me to be close enough to Huntsman to come in weekly and / or at a moments notice if need be and I live 5 hrs away and stiill work. Looks like 2021 is going to run me thru the mill. Merry Christmas everyone

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,333 Member
    edited December 2020 #3
    foamhand said:

    Clinical Trials on Hold...

    My right hip cancer lesion has become a surgery issue. I scored a 9 on the fracture screening at my orthopedic Dr. giving me a 33% chance of fracture now. Surgery is slated for mid January to have rod and screws installed. Secondly, I just spoke with Dr. A at Huntsman and it looks like the end of the road for hormone therapy and I am now refractory. He wants me to have both chemotherapy and radiation as soon as possible after the hip surgery. I will see him in April after everything else is done. He may have another immunotherapy trial for me by then. The only trials available now require me to be close enough to Huntsman to come in weekly and / or at a moments notice if need be and I live 5 hrs away and stiill work. Looks like 2021 is going to run me thru the mill. Merry Christmas everyone

    .

    Happy holidays to you. Wishing you hope, health and happiness. I'm rooting for you. 

  • Old Salt
    Old Salt Member Posts: 934 Member
    edited December 2020 #4
    Thanks for the update

    Yes, I am rooting for you as well. I hope the hip surgery will go well and that the 'delay' in your prostate cancer journey will turn out to be a positive.

  • VascodaGama
    VascodaGama Member Posts: 3,513 Member
    edited December 2020 #5
    Merry Christmas to you too

    Foam,

    I admire you positive attitude in confronting your present status. I hope that the new year brings you peace of mind.

    Best wishes in your continuing journey. 

    VG

  • foamhand
    foamhand Member Posts: 93
    Jan 29 2021 CT scan report

    Well, Had my right hip pinned and screwed on Jan 6th, 2021 to secure my right hip lesion. Radiation will be used on it next to kill the cancer lesion. Everything went smoothly and I'm completely mobile again with a slight limp but it's going away more everyday. Dr. X-rayed it and says healing looks "Phenomenal". I'm back to full time work with light duty restrictions for one more week and then I'm back to full duty. Had DXA scan and CT Scan today. DXA summary is I have osteoporosis with a moderate fracture risk and some minimal bone loss since DXA 1 1/2 years ago. I would expect nothing less of someone who has no testosterone and who just turned 60 this month. Have a exercise and eating / supplement plan to work on this. CT scan is as follows:

    Study Result

    Narrative

    Examination: CT chest, abdomen and pelvis with contrast

    Reason for exam: Prostate cancer

    IMPRESSION: No evidence of metastatic disease

    Comments: The lungs are clear. There is no pulmonary mass or nodule.
    There is no acute infiltrate or effusion.

    Mediastinum and hilar regions are unremarkable. There is no
    significant lymphadenopathy. Central pulmonary arteries enhance
    normally. Thoracic aorta and great vessels are normal.

    There is an old healed left posterior eighth rib fracture which is
    unchanged from previous studies. Bony thorax is otherwise intact. No
    blastic lesions are seen to suggest metastatic disease.

    There are scattered cysts throughout the liver which are unchanged. No
    solid or worrisome hepatic lesion is identified. The spleen, pancreas
    and adrenal glands are normal.

    There is a stable nonobstructing left renal mid pole stone. There is
    no pelvic or ureteral stone. There is no hydronephrosis. There is no
    renal mass.

    There is mildly prominent 11 x 12 mm left retroperitoneal lymph node
    at about the level of the iliac bifurcation. This is unchanged from
    previous studies.

    There is nodular irregularity of the prostate gland which is not
    significantly enlarged. Prosthetic calcifications are present.
    Appearance is stable when compared to the previous study from October
    2020. There is no other pelvic mass or free fluid. There is no bowel
    obstruction.

    The lumbar spine and pelvic bones are intact. Degenerative changes are
    present about the hips. No blastic lesions are seen to suggest
    metastatic disease. Postoperative changes are present about the right
    femur.

    All CT scans at this facility use dose modulation, iterative
    reconstruction, and/or weight based dosing when appropriate to reduce
    radiation dose to as low as reasonably achievable.

    Looks like I'm doing better than expected at the 5 year mark with Gleason 9 cancer. Will be consulting with my local oncologist soon to plan next course of action. 

     

    At this point, I probably will not be returning to Huntsman Cancer Institute unless / until they positively have a clinical trial they want me on. No sense seeing two hospitals and duplicating my care (AND MEDICAL BILL) if I am getting what I need here in my hometown. Anyway, this was the best 60th birthday present I could have asked for. Hope all of you are having good success stories as well. Take Care. Will post again when any significant changes occur.

     

    foamhand.



     

  • Old Salt
    Old Salt Member Posts: 934 Member
    edited January 2021 #7
    Thanks for the update!

    I am no MD, but that report looks great to me.

    Congratulations!

  • VascodaGama
    VascodaGama Member Posts: 3,513 Member
    edited February 2021 #8
    Small size tumor limits the reliability on CT scan results

    Hi again,

    I am glad for knowing your return to work. Hopefully you are not required to carry those heavy toffees again.

    I wonder what your new doctor has in his sleeve to offer. As you know by now, the CT scan has limitations in detecting cancer, unless this grows into a solid tumor with over one centimeter in size. I believe that a PET scan would provide a more realistic status of your case that would serve better your doctor in identifying the hideaways of the bandit. I hope you discuss on the matter the next time you visit him.

    Here is a link of your story, for those nterested in knowing your journey;

    University of Utah Huntsman Institute TAK-700 Clinical trial | Cancer Survivors Network

    Thanks for the report. Best of lucks,

    VG

  • foamhand
    foamhand Member Posts: 93
    Standard of Care

    I will be receiving 4 weeks of radiation to the prostate and bladder base as well as to the lesion on my right hip that was just repaired. I'm going to ask if they are going to go after the enlarged lymph node as well. I believe the reason they are reluctant to use PET scans is that insurance may not pay for it and if it involves subjecting me to larger doses of radiation, they probably are reluctant to add to my radiation load already. I will ask anyway. After 4 weeks of radiation, I will be getting 6-8 sessions of chemo with Docetaxel and a couple of other pills, one infusion every 21 days. This is considered "Standard of Care" for people in my situation. After that, We will check back with DR. A at Huntsman to see what clinical trials may be available for me at that time. My orthopedic surgeon looked at my bone DXA scan and said I have osteopenia, but not osteoporosis yet. He said I'm still in good enough shape to lift those 56 pound blocks of butter, so back to full duty at work next monday. Still feeling pretty good overall but I'm appreciating my naps a little more now that I just turned 60. Best Regards.

    foamhand

  • VascodaGama
    VascodaGama Member Posts: 3,513 Member
    edited February 2021 #10
    Standard of Care

    Foam,

    I think your doctor's Standard of Care is super. This combination therapy of RT plus Chemo have shown successful results in guys with identified spots located at various areas. The prostate (including the surrounding tissues and bladder/prostate base) is one of the spots. Probably they will include a series of Lymph nodes and the identified bone. Chemo is to cover the systemic areas not identified. In such regard the doctor may think of the CT scan as enough in imaging diagnosis because chemo would cover the unseen. But PET would give him more certainty of the areas to be covered by radiation. After all it is the radiation that kills the bandit.

    Please note that the absorbed radiation from PET, CT or BS scans are minimum. They do not affect you more. The best in PET exams for PCa is the PSMA-PET that may be still expensive in the USA as it only recently has been FDA approved. However, you can inquire on the more traditional F-18-fluciclovine PET scan in use along the past five years. I think it being covered by the insurances.

    I am not so sure if your orthopedic is right. You may look in good shape to support heavy toffees but the effects from the years on ADT may not have dissipated yet. The combi treatment will also add some deterioration in bone so it will be wise to include in your periodical tests the markers for bone health and anemia. I think you should inform your RT oncologist on the issue as many guys in similar situation have been put on bisphosphanates pills.

    Thanks for the report. I wish you the best in your continuing journey.

    Happy birthday,

    VGama

  • foamhand
    foamhand Member Posts: 93
    edited February 2021 #11
    Biphosphonates

    I am in a catch 22 with Biphosphonates. For the 4 years going to Huntsman institute, I was given Zometa (Zolendroic acid) IV 4mg every 3 mos when I went up there until about a year ago. I developed some dental issues that most likely require extraction. However, due to the risk of ONJ or BRONJ ( Osteonecrosis of the jawbone risk) I have not been able to find a dentist or oral surgeon willing to extract any teeth. I am most likely headed to be a candidate for dentures. Dr.A discontinued the Zometa thinking a vacation from it would reduce the risk of developing ONJ and I could get the dental work, but many if not most dentists are reluctant to do invasive dentistry due to ONJ. My local oncologist thinks he has a oral surgeon he can refer me to that will be willing to do the necessary work, but with everything else going on and limited dental insurance coverage, I don't know how soon I will be able to afford it. Anyway, my work has made accomodations that I can have some younger employees lift the butter blocks up to the staging table most of the time and I just have to add them to the machine. I would only have to do the lifting myself if we were missing people and no one was available to help me which is an occasional event but not a regular situation. That should help some.

    foamhand

     

  • foamhand
    foamhand Member Posts: 93
    edited August 2021 #12
    Chemotherapy now.

    Hello All,  After 20 sessions of radiation in Feb / Mar, we waited and did a PET scan with Auxumin tracer in May. I have 12 enlarged pelvic lymph nodes, 2 over 2CM in size. Radiation doc said that was too many for more rads so my main oncologist has started me on Docetaxel every 3 weeks and YES, the first round is harsh. My latest full body bone scan showed stable with just 2 spots, one at the right femoral neck that I have had re-inforced with rod and screws and one on posterior 8th rib. These have been there awhile but at least no new ones showed.

    Any suggestions on how to support / build up my system between rounds of Chemo? At this point, no set course for Docetaxel. As long as it works, they want to keep infusing me. However, the oncologist said that if scans show good after 4-6 cycles, I may be able to take a Vacation from it.

    The oncologist said we are buying time now for the FDA approval of the LU-177 PSMA therapy to get rolled out and that would be next after chemo but that is a few years away. Still working full time but QOL is starting to suffer a little. Will update after a few cycles.

    foamhand

     

  • VascodaGama
    VascodaGama Member Posts: 3,513 Member
    You are brave

    Foamhand,

    Thanks for the update. I wonder which symptoms from Docetaxel are affecting you the most. Previous guys on chemo have reported on cases of body fluid retention and anemia. These may be controlled via diet (no toffees) being daily cranberry juice and spinach or beans (iron) recommended. Cases of leukopenia are more critical and should be handled with medication if necessary as easy infections become prevalent. You should inform your doctor on all symptoms and take actions promptly. Surely physical exercises are important too. 

    Chemotherapy can be administered intermittently too. You can break the sections if you are not feeling well and restarting it after a period on vacations. 

    I hope things go well and that you manage some control on the bandit.  Lu177-PSMA is in clinical trials at several places but I am not sure if there are restrictions for inclusion of chemo experienced patients. You may question your doctor on the matter. 

    Best wishes in your continuing journey. 

    VGama

  • Old Salt
    Old Salt Member Posts: 934 Member
    Yes

    you are brave; chemo is no walk in the park.

    With respect to minimizing side effects, didn't the team that is treating you give you advice?

    Thanks for your report and best wishes.

  • foamhand
    foamhand Member Posts: 93
    edited September 2021 #15
    Thank you for replying

    I got a whole "Chemo Users Manual" from the oncologist. It has diet info, but I was just wondering what other things might help that have worked for other people. Vacations from Chemo have been discussed but probably won't be an option until at least 4-6 cycles. Yes, VG, the prerequisite for the LU-177 treatment is I have to have had Chemotherapy first. Not sure if both Docetaxel and Cabatizaxel have to be used and failed or just Docetaxel. LU-177 still has to be rolled out across the USA anyway as there is only 2 places with the special scanning equipment available, and still awaiting FDA approval.

    The side effects have been greater fatigue than just hormone therapy and some bloating / fluid retention. Mine was helped by reducing salt intake. I am also on Prednisone which has promoted some weight gain. At least the 2nd week after chemo I begin to feel ok, but then have to turen around and get hit again on the 3rd week. We'll see how it goes by the 4th cycle. Hopefully a vacation is on the way.

    foamhand