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University of Utah Huntsman Institute Clinical trial

foamhand
Posts: 79
Joined: May 2016

Well, maybe some good news. My oncologist called and after consulting with her partner, she said I am such low volume spread that it may not yet be time for chemo and that lupron and casodex may be enough now. She is also going to refer me to The Huntsman Cancer Institute at the University of Utah for a clinical trial of a promising new drug. I told her to go ahead and get me referred. Maybe some good news finally. I'm cautiously optimistic.

foamhand
Posts: 79
Joined: May 2016

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
Posts: 720
Joined: Aug 2014

and especiallty for the positive news from the trial.

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VascodaGama
Posts: 3108
Joined: Nov 2010

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
Posts: 79
Joined: May 2016

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

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VascodaGama
Posts: 3108
Joined: Nov 2010

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
Posts: 720
Joined: Aug 2014

by the good doctor A. 

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

foamhand
Posts: 79
Joined: May 2016

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
Posts: 720
Joined: Aug 2014

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
Posts: 79
Joined: May 2016

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.

 

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VascodaGama
Posts: 3108
Joined: Nov 2010

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

foamhand
Posts: 79
Joined: May 2016

My other blood work always comes back in my normal range except for red blood cells showing slight anemia which is expected due to the cancer and The RGB/HGB are only slightly low. My ALT / AST levels are always in the mid to low 20's which is very good according to them. The small nodules in my liver have been diagnosed as having the density of water. The Results were stated as follows:

Multiple round well-defined areas of decreased enhancement within the liver are unchanged in size and number. The largest of these measures water density and these likely represent incidental cysts.

So far, My liver seems to be OK.

foamhand

foamhand
Posts: 79
Joined: May 2016

I seem to have lost my January 2019 post where I mentioned I am at 0.9 and Dr. Agarwal's assistant says they consider me stable. I will continue on the trial as long as it works. I must have mentioned something that violated some terms of the site. This was not my intention. Anyway still doing good and hope everyone else is doing fine.

foamhand.

 

hewhositsoncushions
Posts: 301
Joined: Mar 2017

Foamhand

There was a site wide dataloss and all posts back to a cerrtain date were lost by the system. That is probably why your post is not there.

H

foamhand
Posts: 79
Joined: May 2016

I got to thinking that I may have mentioned something that may be confidential about the sucess of the TAK-700 / Lupron combo and it's future. Oh well. Thanks for the info.

 

My 6 week interval PSA was up to 1.2 from 0.9. I was a little concerned, so I called Huntsman and they wern't too concerned. They said it could be due to something I ate or a temporary use of an antibiotic for bronchitis I had, or just a fluctuation. I hope to see no change in April when I return to Huntsman for my checkup.

Best to all. 

foamhand

 

Georges Calvez
Posts: 346
Joined: Sep 2018

Hi there,

Some mens' PSA levels really do fluctuate around for no apparent reason at all.
I would not worry about a change from 0.9 to 1.2.
Doctors and patients get too caught up in blood analysis results.
Patients more understandably so than doctors who are supposed to have some training in the natural fluctuations and  errors that can occur in biochemical analysis.
Wait and see what happens next time out.

Best wishes,

Georges

foamhand
Posts: 79
Joined: May 2016

Being on a clinical trial where my max threshold is 2.6 before being taken off of the trial is a small window, so this is why I was concerned.  I still have my prostate in place whole infected with Gleason 4+5=9 Pca. The trial has me stable for now but I am very high risk for progression, so small changes get my attention. I do listen to my doctor and if he says no big concern, I just carry on with life, but I do check on any changes. Take care.

foamhand

foamhand
Posts: 79
Joined: May 2016

Hi all, well some not so good news at my last visit to Huntsman. My 6 week PSA test in February showed an increase in PSA from 0.9 to 1.2. I was tested again Monday 4/8/19 with a PSA of 1.3. They said it looks like the beginning of refractory disease but they want another test in 6 weeks to look for continuing increase, as they said it could go down again. They also said they want to do the BRCA germline genetic testing to see how prone to early death from Pca I may be. It sounds like they are trying to see how aggressive we will need to get should this trial finally fail. I am still on the trial until my PSA reaches 2.0 for 2 consecutive tests 1 week apart, and I will have CT scans and bone scans again on my next visit.

They did say this doesn't necessarily mean my cancer is spreading, but it may be time to go in a different direction, ie: Chemotherapy, a different trial etc.

I will post my results. after my next 6 week PSA test.

Foamhand.

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VascodaGama
Posts: 3108
Joined: Nov 2010

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

foamhand
Posts: 79
Joined: May 2016

I have talked to Dr. Agarwal previously and he said his first line of attack in mutating refractory disease would probably be a round of chemotherapy and he said this works very well in early mutating disease. I would stay on Lupron indefinitely and he would put me on the very next trial that he sees would benefit me.

I have read where a breakthrough in identifying what goes on in refractory disease mutation has been reached. A DNA mutation re-writes the blueprint for AR receptors that makes them non-androgen dependent. Maybe this is the key that unlocks future medicines. Hopefully trials for these treatments come reasonably soon. 

Foamhand.

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VascodaGama
Posts: 3108
Joined: Nov 2010

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

foamhand
Posts: 79
Joined: May 2016

This trip to Huntsman I had CT scan & bone scans. My PSA was 1.5 but the radiologist noticed 2 TINY new spots, one on the back of my 7th rib and one on my sternum. Dr. Agarwal said this is signs of disease progression and he took me off the TAK-700 study drug. He said the CT scans showed absolutely no soft tissue / organ / lung involvement and he feels I am still relatively stable at this time. He said that the expected time for progression was 33 mos. and I made it 36 mos. with aggressive disease (Gleason 9). He is happy with the results as this shows that TAK-700 (Orteronel) can compete with Zytiga, and where Zytiga requires the addition of Prednisone, TAK-700 does not.

Anyway He said I am still on his team. He still wants to see me every 3 months and I will be placed on another trial pretty soon. They will call me next week with a new game plan.

foamhand

 

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VascodaGama
Posts: 3108
Joined: Nov 2010

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

 

foamhand
Posts: 79
Joined: May 2016

The latest CT scan shows no soft tissue or organ involvment and even the enlarged lymph nodes are now normal size. So for now it's about combating SRE's (skeletal related events).

Thanks again VG.

 

foamhand.

 

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VascodaGama
Posts: 3108
Joined: Nov 2010

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
Posts: 79
Joined: May 2016

First of all, Thank you VG for bringing PET scans to my attention, as I have not had one. I will ask about them during my October visit. I do want to clarify that I completely understand that barring any new discoveries in medicine, I am now receiving pallative and life extending care but currently I am incurable. I am trusting that DR. A is doing what is best for me. Huntsman Cancer institute has achieved status in the top 50 Cancer hospitals in the United States and so, I tend to trust them. I have had 2 sets of genetic tests done and they all have come back normal, including the BRCA1, BRCA2 and ATM genes that predispose me to a greatly shortened lifespan. However this does not explain why I acquired prostate cancer in the first place. According to the Foundation One Genetic tests and the Ambry Genetics tests, I am not pre-disposed to many other types of cancer including pancreatic, colon, breast etc. so this is some good news. I list my results below.

foamhand

No changes to screening or treatment based on normal genetic test results.
Genes tested: APC, ATM, BARD1, BRCA1, BRCA2, BRIP1, BMPR1A, CDH1, CDK4, CDKN2A, CHEK2, DICER1, EPCAM (deletion/duplication only), GREM1 (deletion/duplication only), HOXB13, MLH1, MRE11A, MSH2, MSH6, MUTYH, NBN, NF1, PALB2, PMS2, POLD1, POLE, PTEN, RAD50, RAD51C, RAD51D, SMAD4, SMARCA4, STK11, and TP53
 

 

foamhand
Posts: 79
Joined: May 2016

Well, I went to Salt Lake City UT. for my 3 month / 3000 mi Cancer checkup. Things are still pretty good. I asked how compromised my immune system was and they said hardly at all. I am slightly anemic, but nothing to worry about. My PSA is slowly going up which is to be expected as I am now entering the hormone therapy resistant phase. Still no soft tissue / organ involvement and liver and kidney function are still great. My bone metastases are still limited and relatively small. Dr. Agarwal said we now just do standard of care treatment and test PSA monthly. Once it reaches 5.0 we will do more tests and possibly biopsies to determine the next course of action. My PSA today was up to 2.2 from 1.7 in July so hopefully it will continue to rise slowly. Still feel good and keeping a positive attitude. I am going to take this time to try CBD oil with low % THC. Many friends who are Marijuana fans (it's legal here where I live) all say that some studies have been done that shows THC can kill cancer cells, and CBD with </= 5% THC is the best combo. Huntsman Doctors have already said I can use it and not interfere with what they are doing. I figure what the heck, at the very least I may get some pain relief as my joints and hips are sore in the morning from Arthritis and possibly the Pca also. Still doing well enough to work and enjoy life 80% of the time. Best wishes to all.

VascodaGama's picture
VascodaGama
Posts: 3108
Joined: Nov 2010

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

 

foamhand
Posts: 79
Joined: May 2016

As  I understand it, in the USA the so called normal PSA range is 0-4. He may be following this even though I am already diagnosed agressive Pca.  I have to take a look at quality of life as well, and rather than spend all my time in and out of hospitals chasing a cure that according to my information doesn't readily exist for me, as long as I am functional, I want to live life as much as possible. Unfortunately, due to some economic failures in the USA, I have no real retirement fund and must work until I qualify for disability, and that can be difficult to obtain with just bone metastasis, according to what I have read. I do not automatically qualify for Disability until I have visceral metastasis to my organs / soft tissues. My lymph nodes shrank so i don't think that alone qualifies me.  I think Dr. A's team are saying look, your reasonably healthy right now so we don't want to spoil what energy / life you have by pumping toxic chemicals or radiation into you until absolutely necessary. The majority of pain that I have now is Arthritis based and not Pca based. I want to do what is necessary, but I also want to enjoy what life I have left. Thank you VG.

foamhand.

VascodaGama's picture
VascodaGama
Posts: 3108
Joined: Nov 2010

I absolutely agree with you. QoL should have the front seat in this journey. And I think that QoL is also what have motivated Agarwal in using the trigger threshold PSA of 5.0 to restart your treatment. In fact you may be correct in considering your case as systemic.

It is common practice by oncologists in ADT to keep an interval period free of drugs between treatments exactly to allow a return to a life without the side effects from therapies. The patient recuperates his strength and the organs and systems that depend on testosterone return to full functioning again. Even the Arthritis pain disappears once the effectiveness period of ADT ends. My experience in intermittent ADT is exactly that. During the period on drugs I had innumerous side effects including painful arthritis that made me to avoid walking much. These symptoms were all gone shortly after the end of the effectiveness of the ADT.

These trigger thresholds vary by oncologist and patient status, however, in aggressive cases, as the PSA tend to increase rapidly, the threshold value is higher to allow a longer period without treatment (free of side effects=quality of life). In none aggressive cases (Gs6 or longer PSAdt) the threshold is kept low. In my case with Gs6 the trigger threshold is PSA = 2.0 to 2.5 ng/ml. That made me to be on vacations from drugs since 2012, with quality living, making it already seven years. I hope you too manage to have a long vacations period free of drugs.

In your post you also touch on the matters regarding economics. I understand your interest in keeping UTAH with the reins to lead your case if that provides you with free of charge trial treatment, but you can inquire on the protocol reserved for you once the PSA reaches 5.0. I do not think that a clinical trial under a Phase I is advisable to young guys. The QoL could become shorter and nasty.

Best wishes for full enjoyment while on vacations.

VGama

 

foamhand
Posts: 79
Joined: May 2016

My team has not discontinued the Lupron or Zometa. I still receive this every 3 month visit. I believe this is precautionary until I am proven to be androgen resistant, and especially with the Zometa and advanced bone metastasis. Only the Tak-700 (Orteronel) was discontinued per the trial protocols. And yes, 3 years ago, my Urologist said I was not a candidate for surgery due to spread outside the prostate and I needed systemic therapy, so my case is systemic.

I will update in January after my next visit and Q&A session or if anything changes. Thank You very much VG.

foamhand.

 

VascodaGama's picture
VascodaGama
Posts: 3108
Joined: Nov 2010

Foam,

I though you were off drugs since you posted the end of the trial, however you meant to be the end of TAK 700. Accordingly, lupron should be still in effect and you should be in chemical castration. I wonder what the level of the testosterone is. Do you have a test result? This is important to verify your real status.
If its level is less than 30 ng/dL then this surge of the PSA signifies that the cancer is not dependent on the testosterone in circulation and that it might be now producing its own androgens for survival. This is not good and even chemo will not do much good.

Let's wait to see what Agarwal has in his sleeve to treat you next. Probably he is thinking on an immunotherapy which could be the reason for your genetic testing. Guys with certain identified genes did well in immunotherapy with Pembrolizumab and the trial is still going on. In fact there are several clinical trials listed in the National Cancer Institute site;

https://www.cancer.gov/about-cancer/treatment/clinical-trials/disease/prostate-cancer/treatment

These links can give you an idea about immunotherapy using monoclonal antibodies (MABs) like Pembrolizumab+

https://www.pcf.org/patient-resources/patient-navigation/prostate-cancer-clinical-trials/

https://www.emjreviews.com/urology/article/immunotherapy-in-prostate-cancer-recent-advances-and-future-directions/

I will wait for your next news.

Best,

VG

 

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