Blood clot now provenge?

[Judymin]

My husband was on Xtandi keytruda trial. Failure psa at last check 19. Doctor now suggests provenge then chemo. Then he had swelling severe pain in neck ct showed large clot in jugular!!! He is on zarelto now probably for life. Just had another ct. clot much smaller but still present. Afraid will have to hold off on provenge. Now just on Lupron and casodex. Scared to death the cancer is getting worse and can’t do anything. Any thoughts?

[Magnus1964]

I am not sure why you may have to hold off on Provenge? Did your doctor tell you that?

[Judymin in reply to Magnus1964]

Yes said to go on to chemo

[Tall_Allen]

Provenge is out, but can't he still do chemo?

[Judymin in reply to Tall_Allen]

Yes that is what doc proposed. We see him next week. Just terrified at this point

[ctarleton]

Hi Judymin,

Everybody's situation is different, but here are some thoughts of my own experience from a few years ago.

I started Very Metastatic with a PSA of 5,006 almost 6 years ago and Lupron took that down to 1.0 within a few months. PSA began rising after a couple of years and eventually reached 95.0 by year 3. I remember well how I had all sorts of anxiety and uncertainty back then while living with PSA numbers taking such big swings. In hindsight, my actual symptoms were not changing so much, and my other lab results were still pretty stable, and my various imaging results were not showing a rapidly advancing disease burden (still just about the same level of +/- 10 widespread multiple metastatic sites, but nothing apparently growing very much).

I did Provenge as my PSA was then going up into the 60-80 range. The 3 Provenge procedures are sessions of leukapheresis collections of one type of a person's blood cells, and the subsequent "doctoring" of these cells so that they can be put back into the body a few days later via IV infusion... in hopes that they will "take" and stimulate the body's own cells to keep recognizing and fighting the prostate cancer cells into the future.

The leukapheresis procedure involves taking blood out of the body and sending it through a specialized centrifuge machine to harvest just the type of cells needed. That process takes about 3 hours of hanging around on a couch tied to the machine. If one has good veins, a larger bore needle is hooked up to one arm for the blood to go out, and another needle is hooked up to the other arm to return the blood to the body. This goes on continuously for as long as it takes. Some people have problems with keeping the blood flowing and the machine from automatically stopping, many do not. Some people have some unusual sensations related to the anti-coagulant "citrate" chemical used to keep the machine from clogging, many do not. Some people might be evaluated/choose to have a "port" installed to be used in lieu of the arm needles during the procedures, etc.

In my particular experience, I used the arm veins and did feel some weird sensations during the leukapheresis sessions. Men right next to me using either arms or ports did just fine.

I also used an arm for the subsequent IV infusions of the Provenge, itself. I did just fine during the infusions. However...... a day or so after the final Provenge IV I developed a superficial blood clot in the same arm where the larger leukapheresis & IV needles were used. I'd guess that the accumulated trauma of many hours of vein punctures that month could have had something to do with it. Anyway, although mildly painful, inflamed, and a bit swollen, it did clear after several days of my applying hot compresses. (All this did, however, come with anxiety and uncertainty, and a trip to an ER/Specialist for a complete color doppler exam of the blood flow in that arm to confirm what was really happening.)

Not long afterwards, I went on added Xtandi for the first time with a PSA of 95.0, and got down to a PSA of 1.0 within a few months. In November it will be 3 years on Xtandi and 6 years on Lupron. Most recent PSA was 3.5. Still riding this horse for now. Overall, I feel humble and lucky. A Chemo decision is still in my future somewhere.

If your Guy does go on Chemo relatively soon, we all hope he does well. LOTS of experience here of men who have done Chemo with Docetaxel. Searching and clicking on some of the boxes at the upper right of the screen can bring up lots of related Posts and Replies.

Peace and Good Luck,

Charles

[Judymin in reply to ctarleton]

Thank you so much. My husbands scans show lymph node so far no bone. He did zytiga with great results. Then on to trial keytruda and Xtandi. Did nothing so far however still working at feels good. This is 8 years with Gleason 8 psa 22. So thankful. Good luck in your battle

[Hidden]

Low dose Xtandi with sodium ascorbate via IV seems to be a much safer thing to try first before chemo. The Xtandi weakens the cancer cells and the Sodium ascorbate kills some of them - perhaps enough to keep those numbers down for years.

[SsgCulldelight]

Hi, what's his level of mobility, and for sure change that diet, I found Mediterranean style foods are great for this,

[Judymin in reply to SsgCulldelight]

very active, lifts weights does rowing machine. Diet try to keep on Mediterranean, but he loves sweets so that is problem.

[SsgCulldelight in reply to Judymin]

Yeah that's a problem, he must control it though, I suggest that when he wants sweets instead of sugar free stuff, let him have what he wants in very small portion size, besides the first free stuff is worse than the natural stuff, the key is easy nothing that's set biggest than an egg, and only 1 portion, stay away from dairy specifically milk and of course try to get reverse osmosis water. That's basically the water vapor off of boiled water, britta filters accomplish that.

[j-o-h-n]

loves sweets? Then he must crazy about you....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/13/2019 6:14 PM DST

[Judymin in reply to j-o-h-n]

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