Frustrated

[Gecrellin]

After 3 cycles on a research study which used docetaxel and Carboplatin along with rapamycin taken 2 days before chemo I got mixed results, and have been taken off the study. I continue to feel fine--no pain, plenty of energy, no side effects except numbness in soles of feet and fingertips. PSA came down 1% in last 3 weeks after increasing 1600 points in the previous 6 weeks. Scans showed no progression in bones, shrinkage of lymph tumors, BUT more spots in the liver. Doctors may want a liver biopsy, but haven't decided. Had to vent somewhere.

[joeoconnell]

you mean your PSA came down 1% not decreased to 1

[Gecrellin in reply to joeoconnell]

Yes. It is still over 3600.

[Hidden]

People get upset over liver mets and other visceral mets, but I don't think that many cancer patients die from liver failure. Worth checking I suppose.

The treatment halted the increase in PSA, so has (one assumes) stopped the either the increase in number of prostate cells, most of which are cancer one assumes, or else just slowed the increase in numbee, while lowering the metabolic rate of the prostate cells.

Taken off study because of "progression" I assume, of the liver mets. Many of them, diffuse, rather than a few larger ones?

I just went to a talk on neuro-endocrine tumors. I wonder if it could be that. That's at the juncture of the nervous system with the enocrine system. U of Iowa is doing so clever work on that, so they say.

now.uiowa.edu/2015/09/ui-re...

NET is popping-up now late in the prostate cancer cycle. Not especially likely.

Do you think it is clumps of prostate cells that got stuck in the capillaries of the liver?

You probably don't want to try super-physiological supplementation with testosterone.

You taking vitamin D? At least Vit D cant hurt you. youtu.be/NqblQNt-HIg?t=1h10m(Not working as expected?)

[Gecrellin in reply to Hidden]

The liver mets are more diffuse and the ones seen previously are larger. They want to make sure it hasn't become neuroendocrine. Chemo today without rapamycin. No biopsy scheduled yet. Can't stop fighting the devil we know just because something else may be hiding behind a tree!

[Hidden in reply to Gecrellin]

I wonder if there is any way to target circulating tumor cells, just to remove that piece of the puzzle. Any cell in the circulation with an androgen receptor is expendable. ...

[Gecrellin in reply to Hidden]

I'm in a study focusing on circulating tumor cells, but I think there focus is to determine if using blood draws can reduce the need for biopsies.

[Hidden in reply to Gecrellin]

curious as to the study. is it to monitor levels of CTCs?

oh oh the "liquid biopsy" idea.

[Hidden]

Hi

Sorry to hear that news. I also have liver metastases. Unfortunately most likely the study you are in has pre-determined guidelines so they may have no choice. You make ask your oncologist to continue the treatment "off label".

Best wishes

Bill Manning

[Gecrellin in reply to Hidden]

Continuing with the chemo, but not the rapamycin kicker. Will check to see if liver mets have morphed to small cell.

[MrJack]

I am sorry to hear that too, keep trying , I think they have another chemo drug they can try , oh but you said it was a study, well look for something else to try, if something does not work we go to the next available med, at least you don't have pain, I had pain with my bone mets in my chest but taxotere worked for me (so far) I am on third cycle and saw significant drop in psa right away, I would have liked to see you go one more cycle.

I hop you are on ADT/HT as well with Lupron. keep fighting young man!

we need you around!

[Daddyishealing]

Just letting you know im.listening, and that is certainly frustrating, but don't give up. also you can research this but milk thistle protects your liver and I have heard it's good to take during chemo I myself take it due to med for irretractable pain. from what I observe this is a disease of peaks and valleys and you may be somewhere in between as some of your results are very positive. I'll pray the liver biopsies are clear and keep us updated on your treatment . best if health and hugs to you. the fact that you feel good is excellent and a pleasant sign of healing and hope that your body is strong enough to fight and to endure biopsy if you must . xoxo

[Gecrellin in reply to Daddyishealing]

Not concerned about the biopsy, which is being scheduled after Thanksgiving. it is supposed to be only marginally more challenging than lymph biopsies, of which I have had 4. Much easier than a bone biopsy I had for research which failed to obtain any cancer cells.

[Hidden in reply to Gecrellin]

Hi

I had a liver biopsy and it was no big deal. CT guided procedure no significant pain or discomfort from the biopsy

Good luck

[Daddyishealing]

I asked on another thread but got no respinse. please list the 14 suppleness you take I would like to research and get my dad. I ordered the trammune

[Gecrellin in reply to Daddyishealing]

I take no supplements other than Calcium+D and prenatal vitamins(recommended by oncologist for low red cell counts).

[dmt1121]

I think that no matter what course of treatment one pursues, it is always experimental. There are conflicting opinions and studies from all the major prostate cancer research hospitals and "experts" and we just have to decide a course of action that we feel is best for us. I hope that you find a way to make an informed decision about what direction you want to pursue.

I would suggest keeping an open mind and not allowing your doctor to become too much of the "expert" in your treatment. This is your life and your body and you need to be able to gain perspective beyond a single doctor's care. Having a health advocate (spouse, friend or other family member you can talk to and perhaps bring with you to appointments as a second set of ears and for morale support may add some clarity to your situation. You may also consider other less toxic options.

As an example, I am having good luck taking Host Defense Turkey tail and Host Community mushroom capsules (four of one in the morning and four of the other at night) to boost my immune system and help fight the cancer cells. This is a protocol of a local doctor for her cancer patients (primary care doctor). Check out Ted Talks on Turkey tail mushrooms NIH study. I am not saying this is the cure, but this is an example of a possible concurrent adjunct treatment and there are others out there.

You may just need to take a breath and start afresh with some added research. You might still end up doing the biopsy, or you might do that and another therapy, or clinical trial or you might just take some time to do something now for yourself that's really meaningful to you, something that heals you emotionally and/or spiritually. For me, taking that step back and taking that breath frees me from my own confusion, frustration and indecision.

Whatever you decide, I wish you as much meaningful, fulfilling, happy and healthy time as you can get.

[Gecrellin in reply to dmt1121]

I already have doctors on both coasts at research hospitals active in prostate on my team, and keep them both involved in options. My wife comes with me to all appointments. I am regularly searching clinicaltrials.gov, and reading to the best of my ability research studies. We remain active, traveling between treatments and generally living our lives. I am active on a couple of other sites where fellow travelers share their insights.

[dmt1121 in reply to Gecrellin]

I am glad to read all that you are doing. I sincerely hope that you get the care and quality of life you are seeking. Good luck!

[BigRich in reply to dmt1121]

"There are conflicting opinions and studies from all the major prostate cancer research hospitals and "experts" and we just have to decide a course of action that we feel is best for us." The most dangerous words in the English language: " Anything you say doctor."

You gave him very good advice.

A member of the Reluctant Brotherhood,

Rich

[Hidden]

Nalakrats - do you monitor CTC counts? (does anyone?)

Is it A) the same ones circulating endlessly,

or B) are some added and others subtracted,

or C) who the heck can tell....

[Daddyishealing]

Ty so much. I'm familiar with many of those supplements as I have autoimmune diseases. but I'm trying to pick 3vthat would be most imp r my dad while going through Taxotere because he will not take 20 supplements as I would. can you tell me which you think are crucial syagev4, Lupton exgeva psa down from 75 to 17 going through chemo now. I bought maletonin, d3, and b complex and ordered turkey tsil. I also bought wobenzyme but I know he won't take it as he has an issue with "pills" so I need to keep it simple but effective for him. any advice?

[Lombardi24]

Just started Docetaxel and Carbo-platinum. Did Docetaxel first time around 2 yrs ago along with anti-hormone therapy (not working any longer). Doing ok...so far...some nausea... worst part... my partner. How the hell do you navigate a relationship when you are sick? I can get a partial erection with a little help, but he won't be intimate with me. I think he is seeing other men now. Feel like a freak...unattractive...and lonely

[dmt1121 in reply to Lombardi24]

I am sorry to hear that your partner has reacted this way. Some people are up to the challenge and others are not for any number of reasons. Personally, I gave up on sex, as I see it as a small part of my life in the bigger picture. It is an individual decision. However, one's partner may have a different view.

Focusing on getting through your current treatment is paramount. Afterwards, then see how you feel and what are your priorities. You will be in a much better position to gauge what is important to you and how to resolve any related medical, psychological and emotional issues at that time. I am just completing a regimen of docetaxel and it has been hard at times, including "chemo brain", (which fogs your thoughts), fatigue, aches, etc. I am fortunate that my wife has stuck by my side and helped me keep on track.

Right now, it is most important to focus on your treatment and getting well. Spending the added emotional energy on your partner now could be costly in your recovery. Maybe contacting a family member or friend to ask if they will stay with you on the bad days and accompany you to doctor's appointments would a good idea. This is a time to let down our guard, let people help us and focus on our health. This includes having a positive outlook, even in the face of someone close to you who is unwilling to stay by your side.

Perhaps your partner will come around or someone new will emerge in your life but in any case, you need to share a strong emotional bond, not just a physical one. Always remember that it is not you that's the problem. Some people just can't cope or don't want to. Talking to a therapist may be helpful.

Hang in there and get well. Your situation will improve over time and new people will enter your life.

[Daddyishealing]

Ty so much yes I use vita cost solely . great company . the return policy for supplements that one can not take to is excellent . again I thank you.

[Lombardi24]

Thx Dmt1121. I wish I didn't feel so hopeless. This chemo regimen is harder to take than the last. A lot of nausea and digestive issues. Doc says I need to do this in order to receive Provenge. But... (and I apologize for this...so negative)...I am trying very hard to believe that this is worth it. There is no cure...and all I seem to get after treatment is a few months before the cancer is back with a vengeance. Just like my dad's it is very aggressive. I can't seem to catch a break.

[dmt1121]

I didn't realize how far along you are in treatment. I am taking Turkey Tail mushrooms based on recommendations of a local primary care doctor and google Ted Talk on Turkey Tail Mushrooms bastyr.edu/news/general-new... These may help but I don't know. Certain supplements may enhance the treatment protocols you are undergoing as well.

Regardless of the clinical treatments and options that western and eastern medicine has to offer, what do you have to offer yourself? If the cancer is as aggressive as you say, It may be time to consider what meaningful things you may want to do. As much as life is about our longevity, it is also about what we are doing now and whether it is something that feeds the mind, body and soul. For myself, I have been thinking a lot about traveling to places I have dreamed of visiting, such as Machu Picchu, Mayan Temples, Tibet, a tropical rainforest, etc. This is not to say that fighting the cancer is not very important but so to quality of life and experiencing the most you can.

Just a thought for introducing some uplifting events in your life to balance out "fighting the dragon". Take a breath and consider what's most important to you and what your options are.

Pursue a dream and perhaps find yourself on a new plateau with a new perspective! I wish you all the best.

[Gecrellin in reply to dmt1121]

I completely agree. We have continued to schedule travel for the nex several months between treatments. Fight the cancer and liv life simultaneously!