Well rats. C-11 Choline scan today. Last scan was 2/22. FWIW, Lupron vacation since March. PSA undetectable today, but the scan:
1. New choline avid marrow occupying lesion in the mid right humerus likely represents metastaticdisease. Additional focus of choline uptake in the sternum near the sternomanubrial joint is more prominent on prior exam and is also worrisome for metastasis.
2. A right internal mammary lymph node has increased in size with low level choline uptake in aupper mediastinal lymph node is newly choline avid. While these may be reactive, given the priordisease in the chest, findings are worrisome for metastasis.
Will see Kwon tomorrow @ 7am. Obviously I will be going off my "vacation". Feeling a bit stressed at the moment. If anyone has any suggestions to address, I'd appreciate it. Please no need to scold me for taking a vacation, just appreciate any help/advice.
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Thank you TA, yes it does. Went off Lupron when doctor gave me the option of going off or staying on. I was on Lupron 2 years. Odd that PSA was undetectable. I'll listen with hope tomorrow as to my options and also seeing my chemo oncologist Friday. At the very least, I'll resume Lupron I'm guessing and don't know what/ if another round of chemo is warranted. Possibly SBRT on the humerus. I'll post his feedback later tomorrow and as usual, I will come up with questions after the visit as I'm never quick enough to ask them in real time.
Aren't those drugs recommended for mCRPC TA? I haven't been on any ADT for 6 months but was still hormone sensitive when I stopped. I assumed I'm still hormone sensitive, but of course I don't know.
Thank you again TA. Anyone here with Hormone sensitive cancer getting a combo ADT therapy approved by Medicare? I'm brand new to Medicare and will start researching tonight. There's no option for pre-approval as I understand it. They approve and pay or not.
yes I have a supplement plan but I think drugs are only covered under the supplement plan when administered @ the doctors office as an injectable? Lupron for example is covered under Plan B if injected @ the doc's office. It's also covered under Part G (drug plan) if you get it at a pharmacy but costs $1400/ month. Strange right? I already looked Lupron up and spoke with the clinic before I became Medicare eligible. Since Zytiga is in pill form and not an injectable, it would only be covered under the Drug plan as I understand it today.
I was able to do some research. Xtandi (enzalutamide) is not in my Medicare drug coverage formulary. Zytiga (abiraterone) is so I will ask both my urologist and chemo oncologist about it. Have to take prednisone with it (crap.)
Yes. I am getting abiraterone and Lupron along with pelvic radiation. It was approved by Medicare but it turns out it is cheaper to pay cash for Abiraterone. I am paying $200 a month. I will take for 2 years.
GS9, (Stage IV pT3, pN1). After a 1.5 yr. vacation my PSA went from <0.1 to 7.3, with metastases throughout my skeleton. Medical Oncologist put me back on ADT, plus, Apalutamide & Xgeva. Am on Medicare & supplemental.
After 4 mon. PSA 0.2. I appear to be still castrate sensitive. My MO has 20 patients (ages 50's to 90's) on this regime & are maintaining sensitivity, with minimal side effects.
I’m praying for you, swwags! Good for you for taking a vacation….if that’s what you wanted to do. You do you!!! And now, you’ll do you with some new action required. No big thing 😊
I hope we get to see Dr Kwon…..or at least the PSMA test….we’ll see!!
Thank you Cateydid. Back in February he said I could discontinue Lupron or stay on it. I was on the fence but went off it with the intent of ending the vacation this week anyway.
It’s been a long road for you already with this, and I feel for you.
You have some good options, but it seems clear whatever you choose will include ADT. Therefore, exercise takes on heightened importance. The difference between on and off ADT of your mood, overall health and QOL can be sharply reduced or even eliminated with sufficient exercise. What’s your experience in this area?
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While it's still fresh in my head. Met with Kwon. He recommended going on Lupron again, which I will. He said it's the best way to determine whether the cancer is castrate resistant. He said FWIW about 14% of his patients present with undetectable PSA but disclose lesions on the scans and it isn't a determinate of castrate resistance necessarily. My last Lupron shot was 2/22/22.We talked about SBRT and he said we certainly could do that if I want but if we did, we won't know if the cancer is castrate resistant, whereas if I take Lupron now and re-scan in 3 months, I will know. He does't believe the risk of waiting 3 months to re-scan is high. At that point he indicated we could look at 2nd generation ADT and or Pluvicto, etc as the situation evolves.
We DO know that adding the abiraterone +p to the Lupron leads to better progression and survival outcomes in mHSPC. Waiting until you can confirm CR status seems dicey. The PC won’t be waiting of course. I would want to add it in now, personally. Generic Abiraterone at the 250 mg dose with breakfast is not expensive.
Trade off is when you do reach CR status, and you have positive PSMA scan, and you have previously had taxane chemo, and you have already been on an AAR drug such as abiraterone, and your PSA is at least 2.0: then you will be eligible for Pluvicto outside of trials. Seems a lot of hoops in your way. Any chance of going abroad for Lu-PSMA treatment while still HS? ( Australia, India, Germany, Finland?)
I do favor getting SBRT to the humerus, and perhaps sternum while at it. Easy to do. Then discuss starting Xgeva for bone protection (regardless of bone density on DEXA).
You have some serious progression with this news.MOs sorry about that. But time to get proactive / aggressive in containing it IMO. Paul
Thx MateoBeach. I thought much the same on this on the drive home - I'm less in favor of "seeing if the Lupron proves effective" and instead opting for radiation to the 3 sites, then Lupron and Abiraterone at the very least.
Swwags, This response is quite broad and comes directly from my personal experiences. First, the C11 Choline test is not as accurate as the 18F Plarify PSMA test. In 2015 during my 2nd visit to Mayo with PSA 5.1 the C11 showed nothing to inform my treatment. Two days later, I had a F18 PSMA on a clinical trial at John’s Hopkins which showed suspicious lymph nodes in my mediastinum, later verified to be prostate cancer. My recommendation would be, if possible, to get a PSMA scan prior to going on ADT + Abbi or Enza if your ultrasensitive PSA is above 0.5 to get a complete picture of your prostate cancer.
Second, alternate ADT and vacations & PSA limit guidance is an unclear path with only limited, if any, quality studies. I’m on my 4th treatment cycle now with PSA 0.05 and I still have hormone sensitive metastatic PCa. I’ve been on ADT for 9 mos, 18mos, 12mos & currently 9mos. I use PSMA scans and PSA doubling time for guidance. Have been on Lupron, Lupron +Enza and now on Relugolix & Darolutimide. The current drugs were selected to minimize the heart & brain side effects of treatment and to allow a faster return of testosterone or, as necessary, the return to ADT+ . Certainly this is only one case and one person, sometimes we may have to go out on a limb to find our own path to try to control this cancer.
Thanks Chips1942. I've had both PSMA and C-11 Choline in the past and had them back to back as part of a clinical trial. In my body, both showed the same results. As of yesterday, the areas are determined by the radiologist to be positive for cancer. As you can see from my original post, PSA is undetectable yesterday. I will see my Chemo Oncologist Friday and he always repeats the PSA test. I will also ask him to order a liquid biopsy. Lastly, I have a consult with a Radio-oncologist on 9/12 to get his feedback. From there I think I can make some decisions. My intent is to be aggressive as possible in tx. I'll update on Friday after my Lupron injection.
I've had both scans back to back and in my case the C11 showed different uptake than the PSMA, that is, both showed significant overlapping disease, but each showed unique spots. Therefore, I don't buy that one is "better" than the other, they're two different tools in the toolbox.
An update after visiting my Chemo Oncologist. He ordered another PSA and gave me a Lupron injection but he wasn't confident that it would be effective.
At my request, he gave me his worst case scenario which is that the cancer has mutated into small cell carcinoma. He agreed that missing only a single Lupron injection would not normally result in 4 tumors, but rather the Lupron was possibly no longer responding after my last injection on 2/22.
Ok so now that I know worst case and life expectancy of worst case (sorry guys, I just go dark sometimes), what next steps are.
We discussed drugs from agonist to antagonists to chemo and immunotherapy but we agreed we were jumping the gun without more knowledge.
He ordered a tumor biopsy which will be done on the tumor in my breast.
He agreed with me that I should irradiate the tumors and not wait for Lupron.
I am seeing the radio-oncologist on 9/12 and will schedule treatment after a physical biopsy is done.
He ordered a liquid biopsy (Guardant360 Cdx) - results in about 3 weeks.
From there he'll suggest a treatment plan. I'll keep my chin up and hope for the best.
Bump in the road today. After sitting on my imaging for 6 days, the hospital called and said the breast lymph node is too risky for them to do a biopsy. As I understand it, my oncologist ordered an ultrasound guided biopsy which is done by a radiologist in this case with this hospital. So they called today and said they were referring the order to their breast center and I should be getting a call from them soon. Soon is of course undefined.
I'm still meeting with the radiology oncologist Monday do get a treatment plan in place for the eradication of the tumors.
I had the Guardant360CDx sent away. Can I expect a difference in the results of the liquid biopsy from Guardant vs a physical biopsy? Do those two processes provide different information?
I had a radiology consult yesterday. RO is suggesting 5 fractions to upper mediastinal lymph node and 3 fractions to all other locations. He will also consult with my Chemo Oncologist to get a biopsy. Treatment should begin in two weeks assuming that can get the biopsy in. I will keep updating as I learn more.
I saw my chemo oncologist today to review the results of the Guardant360 Cdx. Biomarker MSH6 S24 with a tumor mutational burden of 13.89 mut/MB. was detected
MSI-H was not detected.
Oncologist said it could be treated with Keytruda.
He said I was castrate resistant but when I suggested an orchiectomy he thought it was a reasonable approach pending the results of the biopsy. He said without the biopsy we are just guessing.
I am confused though as I was under the impression Guardant360Cdx would identify the specific cancer in me, or in other words tell me if the cancer was still prostate or now small cell carcinoma. Am I wrong? (no I didn't think to ask him that question while I was in the office. )
I am finally scheduled for an ebus on 9/30 and will see my oncologist on 10/7 to review the biopsy results. I am scheduled for mapping on 10/10. Radiation to follow but not yet scheduled.
Can anyone decipher the road I'm on? Any input is appreciated.
Hello, I just read through your thread, sorry to meet this way, why don’t you start a new post so people will know, I only found your thread through clicking through threads
Thank you. Each time anyone makes a comment in a thread, the thread goes to the top of our feeds. I suspect no one can answer the questions as the circumstances I'm facing is ridiculously complex. I'll know more after biopsy.
Time for an update - I had a biopsy a week ago on the lesion in my humerus. Surgeons decided it was less risky than the eBus. Glad I had it done as it's led to multiple changes in approach.
Turns out the biopsy disclosed :
1. Plasma cell neoplasm
2. FISH (myeloma panel) studies pending; appended results to follow
3. Negative for metastatic carcinoma
So it was not Prostate cancer that had shed its PSA, and is not small cell carcinoma. I have a bone marrow biopsy scheduled in a couple weeks to determine what type of myeloma I have and also staging. From there I can determine forward treatment options. Will also undergo an FDG scan, just hasn't been scheduled yet.
HURRAY for me - I have two cancers now. Ahh well.
I am getting mapped on Monday and then the irradiation will be scheduled (5 fractions on the lesions)
I'm glad I have my oncologist as he's adamant about getting biopsies when possible.
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