On our way to MO for first blood draw after 30 days from first Lupron shot and two weeks of casodex. Anything I should ask for in the blood draw tests or anything I should ask the doc? We are at Seattle Cancer Care Alliance, Dr. Heather Cheng.
Blood draw: On our way to MO for first... - Advanced Prostate...
Blood draw
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teamkv
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I might suggest they do an extra vial and get a testosterone test to see if Lupron is doing its job fully, I wish you the best.
What was the diagnosis?
In doc waiting room right now and don’t have the Dx memorized yet. Originally Gleason 7 PSA was up to 64 right before treatment. No lymph or bone Mets from CT. Then bone scan showed something on tailbone. Radiologist said bone met at Swedish, MO at SCCA said not definitive on the bone met, it might be something else. He never noticed or mentioned any pain until we met with the radiologist at Swedish (very know it all SoB who kept us waiting for 1.5 hrs) MO at SCCA said not definitive on the bone met, it might be something else. The MO we went with at SCCA said we start with Lupron and 2 weeks Casodex. We may have to do a second blood draw again. They didn’t order the testosterone only do PSA. Someone suggested to me privately to get an E2 level.
Can he get a NaF PET or can they biopsy the "met" on the tailbone? If negative, he can attempt curative therapy. If positive, he can add Zytiga to Lupron.
Why would you get E2?
I’m not 100% sure. But I am researching Estadiols role in PC. I am having trouble translating this one: frontiersin.org/articles/10...
It's very complex and depends when it is given. But his serum levels are unimportant for decisions about his therapy. Don't get lost in the weeds. Stay focused on what's important. For his bloodwork, only his testosterone and PSA are important. It is also important to find out if he has a bone met.
Had test results from two months on treslar and came back as psa .6451 and test is 11. What am i looking far?
You're looking for a castrate level of testosterone (ideally below 20) and a low PSA
I think the plan is to look at the possible tailbone met at 6 months to see what has happened to it after Lupron. She did throw around radiation and treating it as olio...tic desease and treating the met if it is that, that way?
it is true that if it is indeed a met the Lupron will shrink it. Will his insurance cover a NaF PET scan at Seattle Cancer Care Alliance? (It may depend on if they have a registry)
I will ask. We are still in the waiting room.
What does ‘have a registry’ mean?
Medicare only approves the NaF(18) PET scan if the facility has a registry or a clinical trial. That means they keep detailed records of every patient who gets the scan, and makes the de-identified records available for analysis.
We aren’t on Medicare but insurance through work: Cigna
Get pre-authorization then
We meet with the doc after blood draw
Ok the aftermath report:
PSA is down from 74 to 2.47. Got another one month shot of Lupron. He really hasn’t had bad side effects some hot flashes and notices some memory issues, but no fatigue or anything else. Doc suggested staying with one month shots as it seems most have fewer side effects with them. We live close so it’s not a problem. Then she suggested we consider starting Zytiga (1 with a low-fat breakfast and prednisone 5mg) a day. She is still saying that it isn’t conclusive about if he has a met of his tailbone so then we would look at radiation (reg or proton) in about 6 months. Said the combo of ADT would be better before radiation rather than Lupron alone. We will reassess with scans at the 6 month mark. Since it showed something on the tailbone insurance gave the ok to cover Zytiga. With taking only 1 a day instead of 4 it also makes the copay per month less. I’m not sure how 1 with food is the same as 4 w/o food. But I do like this doc so far. Seems very smart and a team player. Seems to tailor the treatment to his situation. She said this wasn’t standard protocol but fit his situation. We also asked about the pretreatment to prevent breast growth, and she said they do that more in LA then in Seattle but would be happy to give us a referral for the procedure. Better than a reduction surgery later. Thank you all for your replies!!! We will be getting the testosterone levels this time since he started on it. She agreed to that for now.
If you are talking about chest radiation to prevent breast growth, that is an outmoded therapy. 10 mg tamoxifen daily does a better job. But it is only necessary if he is taking Casodex or has experienced breast tenderness. It is usually not a problem with Trelstar alone.
Did you check if his insurance will cover the NaF PET? Probably too late since he has already been on ADT.
Here's some info on food with Zytiga. Watch this closely - these were very small studies:
With low fat breakfast: ascopubs.org/doi/10.1200/JC...
With high fat breakfast: meetinglibrary.asco.org/rec...
Absorption higher with high fat meal: accp1.onlinelibrary.wiley.c...
Tamoxifen may work better, however the side effects are less than ideal. Plus don't want to add to the chemical soup unless necessary.
Which side effects in men? If he is not taking long-term Casodex, he probably won't need any treatment.
Yes, that seems to be what I’ve concluded but it is his final decision. I’m just his researcher. 😬
One guy I talked to had a severe skin reaction to the chest radiation.
• in reply toTall_Allen
I had gynecomastia from a 6 month eligard shot. I wanted a preventative but was denied. Presumably not a profit opportunity or core competency for the urologist.
Tall_Allen• in reply to
Tamoxifen is very cheap.
Hi teamkv, 30 days after first ADT inject and daily casodex 50mg pills for first 14days, the Psa will usually reduce quite a lot but it does not show you are cured, or that all Pca cells have died, they have just been put into "sleep" mode, and their activity at growing and maybe spreading has been slowed down maybe 10 times. You are at the beginning of a long series of treatments. Nobody can evder say they have Pca remission until they have a period of several years with NO treatments at all, and Psa is un-measurable, ie, below 0.01 or therabouts. So you cannot know what your response to ADT will be.
I know a friend who got 4 months Psa reduction with ADT injections, Psa rises sharply, and then Casodex was added and it pushed up Psa even faster, so he then started chemo, and that reduced Psa from 40 to 2 in about 3 monhs, but Psa rose again fast, so now he is on Xtandi, (enzalutamide) and he's in a trial for Lu177, and because its a trial here it is free.
Its only taken him 3 years to get from diagnosis to end of chemo. And he had small
initial tumour and Psa about 6 when diagnosed.
On the other hand I probably had Pca in 2005 but Psa was only 3.0, but at 2009 it went over 5.0 and biopsy gave Gleason 9+9 and "young man's aggrssive cells" and it was later found at time of operation to be not-operable, so PG remains. It spread to many places in bones. But ADT continues now after beginning in mid 2010, and I began chemo 6 weeks ago, and I had had Cosadex again continuously that gave 6 months, then Zytiga
( abiraterone ) which gave 8 months.
So I must travel back and forth to doctors very often, and average time between each medical appointment and treatment is maybe down to 2 weeks.
Because I could not get all Pca cut out by operation, I am chasing the horse after it has bolted. At beginning of chemo, Psa was 12, after 3 weeks it went to 36, then to 2 weeks later to 26, and 2 more weeks to 27 at 2 days ago, so Psa has "flared", and then flattened,
and if it rises fast again it will be considered to be failing, so I will maybe have Lu177, and maybe change to Jevtana ( cabizataxel ) but not enough facts are known yet to make sure whatever decision is made is the best to prolong my life.
I cycled 19km to hospital to get my 3rd chemo today, then had lunch while the angelic nurses pumped in the Docetaxel, and without much delay, and then rode 19km back home feeling about 25, no aches or pains, although at 21kph average, much slower than 25yo who could manage 35kph. I am 71, and the hospital medics think I am the healthiest stage 4 Pca patient to be seen. But next week when chemo gets into body, I will not be able to cycle much, and will be at home doing home work, craft work in shed, feeling sick, but not anywhere near sick enough to want to die. I love life, and life for me is full of wonderment and I could end soon, I'll be ready for the inevitable event, but not real soon, it seems.
I know your cancer makes you anxious, worried, frightened and you can feel lost; but you do have inner strengths, call on them to rise to help you. Be polite to medics, and any loved ones, and you are not the first to be reminded of your own mortality. The rich and the poor all have at least one common experience which must be faced. It helps to try to be strong, but all you can be is human, and our strengths and journeys with cancer are all different so be prepared for unexpected changes or side effects of treatments which medics cannot fully explain.
I hope the best for you, and other Pca sufferers.
Patrick Turner.
Well said Patrick !
Thank you Patrick, for your candid reply - and a great overview how things can go. I did bring up when it becomes CRPC, she said, 'paraphrased' we will cross that bridge when we come to it.
Ride on Patrick, perhaps a motorcycle would be an option when the chemo gets in. My motorcycle certainly clears my head and I don't have to pedal. Plus I feel like I have a better chance of beating the heck out of this cancer when I wear leather. HA HA.
After 6 years on ADT, my bone density is OK, but below average for non castrated men, and if I got a motorcyle of any kind, and had an accident, the average speed could be 60kph, not 20kph on bicycle, so the energy released is 9 times higher than bicycle and so many times more likely to break many bones, In my distant youth, I rode BMW R75/5 for 160,000km, and got a nicer ride than on Harleys as they were in 1970s.
More reliablity, lighter, less petrol, and far better handling on road and dirt.
I could cruise at 160km, like a turbine engine, smooth, easy to park.
I'd now like a 350cc single, just ride it for kicks, but bicycle gives far better cardio-vascular benefits from only 150km a week. Of course a present 900cc BMW oposed
twin would fetch more willing shielas to ride pillion, but all my sexuality has been exterminated by treatments, so riding out to a nice country motel and indulging in some temporay pussy destruction with happy ending cannot be undertaken unless I use a 3 speed strap on vibrator with glowing LEDs, but ladies who I should date are over 60, and they all paused from men at about 45, and won't talk about it.
I will never be touched by any woman again unless these a nurse at hospital.
I have never ever met any shielas who had the slighest interest in cycling with me. Most at 60 ride so slowly, and complain after 10km, but I easily can do 60km.
I cycled 19km to and from hospital yesterday to get chemo shot no 3. A community nurse called in to give a shot of Nulasta to boost my white cells because first chemo shot reduced WBC from 4.0 to 0.17, and I had 3 days in hospital after suspected infection. Probably from a small amount of dead lower jawbone caused by too much denosumab to counter low bone density. I was given 3 x 2 monthly injects, only needed 1 inject, and men on ADT for long time are very prone to get lower jaw necrosis if they have too much deno. Its all wiered because the deno stops bone loss but for a strange reason it affects lower jaw blood supply and you get a spot of dead bone, and a hole in skin forms over the spot, but I stopped the deno as soon as I knew I had the beginnings of a bigger problem. The dead bone cause a slight ache, but that all went after 3 days with intravenous antibiotics, and where there is an ache, there is often a lurking infection only held down by good immune system, but not eliminated.
The chemo yesterday all went well, and today it rained, so a day on PC and suffering slight slow down of mind doing a pile of calculations for an electronic project I am doing, and next 4 days are going to be a bit slow, but little cycle rides of 12km will be OK, just go slow, but heart works well for me and heart rate has now stabilised since I quit Zytiga in June. Psa was 12.0 before chemo, it flared up to 36, then down to 26, then up to 27 over 6 weeks, and maybe my body or my cancer is at the point where its begining to obstruct the the Docetaxel from getting on with job killing Pca cells. But in 3 weeks, docs and me will re-appraise and maybe book Lu177, or change to Jevtana, ( cabitaxel,) but nobody knows what will work best for me.
Patrick Turner.
• in reply toPatrick-Turner
My brother rides a BMW bike. He's not a Harley fan either.
Patrick-Turner• in reply to
Its a bit off topic, but I could never afford a decent bike until 23, in about 1972 when I got the BM, after having had 8 other bikes which were all in poor condition, and all unreliable, BSA250, Matchless 500 single. Matchless 650 twin, Bultaco Metrala 250, and also a Bitza Harley, 1933 1.2L frame, Norton ES2 barrels, G80 Matchless heads, girder forks, BSA petrol tank, home made oil tank and oil plumbing, Honda 450cc alternator.
Lots of home made things on it, I had a welder, oxy acet gear, I could make much stuff. It went extremely fast, scared me to death, but was not a good nimble handler, and drank too much petrol. But it was good with side box and after so much trouble with car pistons and gudgeons I had it back to side valve, lazy, but usable, and i could carry all my carpentry tools, plus tools for roadside repairs. I gladly sold it when I got a raise at work enabling me to save for something that did not cost every weekend fixing stuff. The BM didn't handle quite as well as Norton 650 twin with FB frame, but it sure was good, and didn't keep leaking oil and breaking, and it stopped real good, and it went quicker over a big hill here as a guy on on HD 1.2L, nice and new.
I'm happy with a bicycle now.
Its day 4 after chemo. I feel like shite, lethargic, guts are churned, cold, and aches and pains coming and going. Maybe I be better in 4 more days, get on bicycle and ride a bit.........
Patrick Turner.
My husband got me into motorcycles when we got married in 1990. when went to Taos, New Mexico on His Suzuki Cavalcade (big tour bike). On my 30th birthday he bought me a used Suzuki 550. i rode for a couple years but then we had kids and I din't want to ride as kids need a mama. Fast forward to turning 50 and kids grown up enough, I first got a little 250 Honda Rebel and rode that for a few years. Then I got myself a used 2006 Moto Guzzi Breva 750. Husband now has a Honda ST1400. For now, it is a place we have so much fun together, although we don't get out as much as we would like. I'm sorry you never found a sheila to ride with. You are obviously an adventurous and knowledgeable guy. Hope you are feeling better really soon and get back on your bike. I'm not a Harley fan myself, too loud and too expensive. BMW's are worth the $$ if you have it to through around, however. Press on, regardless.
I courted a lady on a BMW, she quite liked the BM R75/5. Liked me too. I later thought I offered her some kind of exciting escape from the boredom of her job, typing letters on Wang machine for the leading politicians in Oz at the time.
We married, but settling down after I bought a house was anathema to her, distressing her more than me, so she vamoosed late one night without telling me.
Then I figured I had to be careful trusting ladies, aka shielas.
At that time, parents of ladies hated the idea of me carting their daughters around on a motorcycle. The politics of family interactions was not always plain sailing.
But even when I got a van which allowed camping trips the predjudices continued, and a successful marriage should just be natural without angst and agony, dramas, or putting on the style. I had a number of delightful relationships, but once they got to the inevitable stage where looming permanency threatened the sanity of the ladies, they all invented reasons to travel, find themselves, and avoid committment. I was hopeless at conducting endless persuasions and this was seen by ladies as
manipulation, male dominance, and I was reluctant to try to win any arguments with ladies because its basically impossible, and if you win, I lost the lady. Basically, these ladies who initially swooned with great pleasure were either going to love themselves, and me, and the two of us, or not, and none did, so I never got near having children or a "successful" marriage. During my 30s and 40s, I was a very eligable bachelor, "a great catch", I owned a house, all paid for by hard work, so anyone marrying me could be looked after well at low expense. But that mattered not one bit. I don't mind my continuing singularity now and and I have not had to endure the suffering of a devoted wife who finds herself so distraught with her husbands Pca. I did meet one guy at my 2nd chemo session in next chair along who was about 50, and as soon as he got Pca, his wife vanished. He was not so happy, and kind of fatalistic, with "may as well die" attitude, but I tried to assure him he might consider Lu177 of the chemo did not work, and fact is the chemo almost always does not work after enough time. He had not heard or read about Lu177, and he seemed a bit lost, and my nurse at time scolded me for talking to the guy, but I negotiated that we could all benefit from more open discussions, and I praised her devotion to her job, etc, and I "got around the scold". But what I told this man made him think, and he wanted to talk more to me towards end of the session, and it was all OK and my nurse had to realise my heart was in the right place, and all was well, 3 ppl got wiser.
There's a trial for Lu177 vs Cabazitaxel going on now in a number of hospitals in Oz. I bet the man I spoke with was short of money, but the trial could mean he gets Lu177 for free, with all the supervision of the trial as well.
I could just buy Lu177, $40,000 for 4 infusions, but not all men can afford that. But a trial allows the docs to learn more, so I am negotiating whether or not to be part of the trial. I read scholarly page online which says Cabazitaxel gives no more extension to life than Docetaxel, which I am having now, so there seems no point changing to Cabazitaxel, and so I may have to ignore the trial if they put me on Cabazitaxel, unless they agree that if the Cab does not work, i'd be switched over to Lu177.
It is day 5 after last chemo, and yesterday was slightly worse, so I am beginning to lift now, and I have an inject of Lucrin and I will try to cycle to doc for that, and to have lunch, then spend an arvo in my shed tinkering with electronic stuff, and have classical music from ABC Classic FM. Life could be worse.
Keep well my dear teamkv, look for wonderment, it is all that gives life meaning,
Patrick Turner
I will work to take your advice looking for the wonderment. Have found it it your writing, I must say. Oh, and keep the rubber side down as you ride Sir Patrick. 
There’s a relatively new test. A pet scan with Auxium, supposed to be a lot more sensitive to showing small tumors. Not every hospital has it yet. Might ask
Yes, they have that an doc said we would use it if/when PSA starts to go up. Did not think to ask if we would use it at the 6 month scans, but I will.
Teamkv, I would also ask the office if there is a portal to reference for results. They will often post the results before the appointment and that can help with the anxiety. It will also help you with what questions you want and need to ask.
RW
teamkv• in reply to
There is, we just haven't signed up for it. Just had the experience of blood test results during the doc visit yesterday. I didn't know it could be turned around that fast!!
• in reply toteamkv
Most would say that the hormone therapy can feel alright the first 30 days. After a couple of months the fatigue can be hard. Exercise of any type helps. Eat smart, it is easy to put on weight. Overall, everything you have read as a side effect can happen. Each person reacts somewhat differently and the longer your on it the more new side effects. Good to ask you doc about calcium and iron supplements.
teamkv• in reply to
Are you on ADT & Zytiga/Pred. ? We are eating very strictly, plus supplements, fresh veggie juicing, artisan water, daily workouts of aerobic and weights. No sugar, booze, meat and all organic. I know many don’t think food makes a difference, but just common sense tells you it does. I just am trying to gather as much info as possible. I know everyone reacts differently to the chemical shit storm the drugs create but I also see the value of hitting it hard at the beginning.
• in reply toteamkv
Sounds like you are making great choices. There are a number of books to support eating right to fight cancer. Many times it’s just plain common sense to eat with displine, not that I am a very good role model. I was on ADT for 12 months after surgery with radiation. The last 8 months ADT intermittent to get some QOL. I do all I can each day for as long as I can. Naps help. 😊
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