University of Utah Huntsman Institute TAK-700 Clinical trial

Foam,

As you comment above, little details/changes may have big meanings in your risky case. Surely the increasing PSA is still low and far from the threshold established in the trial but one could expect some variations after two years in remission. I recall Dr. Myers recommending two years as the maximum period in continuous ADT, because it may lead to refractory. His protocol involved intermittent ADT to avoid mutations by the cancer and therefore prolonging the effectiveness of the drug/condition. The bandit is there and may have recuperated from the blow of Tack 700. If still interested in continuing ADT, you need to consider going on vacations away from the drug and restarting it when the PSA reaches to a certain threshold used by Dr. Agarwal in his treatments.

I wonder what kind of treatment Dr. Agarwal has in his sleeve to offer you next. Though still early for planning anything, you could at least investigate about another trial this time involving monoclonals that could be under Agarwal's investigations. You would need a genomic test to identify any particular gene in your type of cancerous cells. They can use the samples of previous biopsy for the test. Please read the links posted to Kidcluch in this thread;

https://csn.cancer.org/node/319261

I understand your wish in following the doctor's recommendation but you can start a discussion inquiring him about intermittent approaches with TAK 700 or other different trial.

So far success as been your motto. Let's hope for a continuing indolent bandit.

Best wishes and luck in this your journey.

VGama

Yes, you are right. This finding regards the work of the two Nobel Prize winners in Medicine, 2018, that found those switches in cells that make them to survive when their DNA is under attack by chemo, radiation or the immune system. The monoclonal is used in immunotherapy as much as in chemotherapy. The intent is to prohibit the cancerous cells from attacking the neighbors benign ones and propagate. Typically cells die by contact with others but this switch allows them to be alive.

There are several trials on the matter so that you may ask your doctor if he would participate in one of them for your benefit.

Best,

VG

Foam,

I read your new thread with the same information posted here, so I will provide you my comment on the matter here as it seems that you will continue your treatment via palliative approaches (ADT, Chemo , Immune, etc). In any case, I would get second opinions on the present status before starting a newer treatment.

From your descriptions, I am not surprised on Agarwal recommendation in continuing the treatment with chemo because of the BS results that found metastases at far places (7th rib and sternum). These findings added to the other spots identified in the pelvic bone and lymph nodes (described in your previous post of 2016), sets you with systemic disease negating the possibility in attacking the bandit with radiation. RT is usually an option when it can be delivered with curative intent. In systemic cases, the tendency by oncologists is to use focal radiation as palliative treatment to alleviate pain (occurring typically in bone metastases cases).

In other words, you can subject this Bone Scan report to a second opinion (a second look on the film) by another independent radiologist to verify and certify the findings. I wonder if such spots existed in 2016 but nobody noticed its presence.

Agarwal suggestion in a trial is good too but you need to follow again the same steps done before starting the TAK-700 trial. You must get a full description and name of the drugs, the details of the trial protocol and certify that you will be taking the drugs and not be grouped in the placebo cohort. 
Total blood panel must be done before administration of anything to certify that the liver, bone health and immune system are in proper conditions. You should request continuous testosterone tests (6 month span) and get a DEXA scan to verify bone loss. You can do these at your local laboratory away from Agarwal auspices. I also recommend you to research on the side effects from chemotherapy, so that you are prepared to counter symptoms. Fatigue will be more pronounced and that may affect your present work (loading toffees).

I hope things continue to develop in your favour. Let us know details of your next meeting.

Your previous story is here: https://csn.cancer.org/node/302660

Best wishes and luck in this continuing journey.

VGama

Foam,

I do not want to distract you from your wishes and believes, but, can you explain your reasoning in above comments?

We all like to think positively at critical moments but one needs to be prepared when the need of making a decision approaches. The CT report indicates findings within CT imaging capabilities. It detects by volumetric shapes larger than 1 cm, anything of smaler size is not reported. The Bone scan got its own limitations but it is better because it detects lesions (deterioration of bone) independent of size. The best to find visceral metastases are PET scans that work at cellular level and scans the whole body. Volumetrics have no role in PET analysis. Even the MRI scan is better than CT in detection of deformations with limits at the 5 to 7 mm in sizes.

In such regard, combating SRE's (skeletal related events) alone this time due to CT results may not be enough as an option for your next step. Surely, you can use now spot radiation to attack all those identified bone mets, but such may spoil the possibility in the future to treat cancerous soft tissue at the same area. Apart from the limits in radiation dose that manage to kill cancerous cells (only high doses are used), there are limits in the amount of radiation absorbed by tissues which prohibits future rads over rads at the same spot. I recommend you to consult a radiotherapist specialist in PCa before making such a decision.

Your case seems stable for the moment (Agarwal confirms it) providing you with time to pounder on your next step. I understand your wish in eliminating the bandit the soonest but we survivors cannot avoid the side effects from therapies once these are done. We need to gain trust on what we choose. In your shoes I would get second opinions on proposed treatment.

Best wishes and luck.

Thinking of you.

VG 

Foamhand

Thanks for continuing updating us on your case history.

I get that you like doing things your own way, but think that you also like to have a helping hand. In your thread of 2016 you raised the comment on the benefits of cannabis oil in killing cancer and this time you went further by getting the approval from your medical team. Though my thoughts on CBD and THC are reserved regarding the "killing of cancer", I think that you should try if you believe in it and if it doesn't hurt. At least it will help in pain management.

Many reading this post should know that you are a young 58 years old patient, with a very aggressive PCa (Gs9 in 100% of the gland) stage IV (metastases in bone and lymph nodes) and have stopped the trial ADT treatment in July due to refractory. Lupron effects are by now gone and one can expect the PSA to rise faster. In January you had a value of 0.9 ng/ml increasing to 1.7 in July (under medication) and now it is 2.2 which represent a doubling of approximately 3 months. This is not good but it is not the worst case either. I wonder if waiting to a PSA of 5.0 for starting a newer trial treatment is the best approach.

In fact you never got a radical or tried to eliminate the cancer at bone with spot radiation or even tried to locate the metastases with a more sophisticated image exam. You trust Agarwal and that is very good but you need more detailed information regarding the full protocol he has reserved for you.
I always wondered why didn't he suggest a PET scan on the trial expenses instead of a simple CT and Bone scan. The genetic test serves as informative only. It does not diagnose cancer but simply informs on probabilities in a case where cancer may already exist. 

My first thought on CBD and THC is that it can cause liver toxicity. These drugs interfere with the enzymes in the liver in charge of drugs metabolism (CYP P450) which should be kept fully functional for the time when you start taking medication again. I wonder if CBD effects are reversible. Surely the oils on sale over-the-counter are not fully potent and even the THC is just a syntectic form of the real stuff. Probably you got used to clinical trials and now want to embark on a holistic one. I hope it works for you.

Best wishes and luck in this journey.

VGama