So now I've seen my Oncolgist

[thevvy]

Well I had my first Oncologists appointment in Adelaide on the 10th April, at the New R.A.H. with Dr Tan, a Medical Oncologist who specializes in PCa.

I had an awesome visit and came away with "some" good news. My PSA has dropped from 10 to 1.2 in 4 weeks on a Cosudex/Triptorelin combo.

Given this result we decided to leave Chemo as an option for a while and I am now on ZYTIGA as well Prednisolone, and staying on the triptorelin. Also be having 3 week blood tests to keep an eye on Liver function as well as everything else.

6 weeks time will be a skype link with the Onc. and GP

Next visit to the Oncologist will be in July. Just a casual 1500km drive! Good job we have a caravan, so we can turn it into a mini adventure.

I have some concerns about side effects, but the Onc. has given me his mobile number so I can contact him for advice. He has also briefed my GP, who will be working with us while I make this journery.

What can possibly go wrong?

If anyone has any advice for the Zytiga, it will be gratefully accepted.

Hope you are all feeling well.

'Ooroo

Thevvy

[joancarles]

Very good news thevvy. I am taking Zytiga and it is working for me. We hope he keeps working to continue.

The effects that I have had have been hot flushes and some fatigue.

Fatigue is controlling me very well with exercise. I have created my own training with long walks at a high pace.

I do not know how to control hot flashes. Light clothing and lots of water. But I do not know how else we could control it.

[thevvy in reply to joancarles]

I have hot flashes now on triptorelin, and during my first treatment in 2013 with zoladex. I found that drinking Camomile tea helped quite a bit. At the moment I tolerate them (about 10 to 15 a day on acverage. Don't seem to have them while I'm sleeping, or if I do, they don't wake me. But as soon as I open my eyes in the morning ...BIFFO ...

Thanks for your reply.

Stay strong and be positive.

Cheers

Thevvy

[joancarles in reply to thevvy]

I appreciate the advice of drinking chamomile tea.

Let's get out of this

[thevvy in reply to joancarles]

Bloody oath!!

Going fishing on the weekend!

I'd be going tomorrow, but the wife's got me digging post holes in the garden with a crowbar and shovel .....

Son needs me to help him do some upholstery work on a Wellcraft 40, calls me his apprentice.

What I find to be scary, is that if the doctor hadn't told me I was crook, I wouldn't know I was!

I also drink Bundaberg Rum ans Sambucca, but that's probably not recommended!

[Hidden in reply to thevvy]

Well craft is a fine boat.. I’m digging holes also before summer hits. It sounds to me that you re enjoying life.. keep truckin!

[Hidden in reply to thevvy]

No night sweats? You’ve dodged a bullet on that one thevvy .I awake at least 5 times per night feeling like a piece of bacon on the skillet . I just throw off the covers and fry, entire body covered in sweat. I take some deep breathes and just let it take me for 5 or 10 minutes. Waves of heat rush over me. 3yrs of that nightly routine... afterRt I can’t handle excess heat and it’s 100 alread here in the SW desert. . Soon to the mountains.. cool air.. hot flashes not so bad. My thought now is side effects smide effects , no biggie, if I’m not bent over in pain , I can not complain. I’m happy to be floating by on cruise control for now. Until new hurdles present themselves. ..... Live for today brothers and sisters.. life is short......

[thevvy in reply to Hidden]

Too right Lulu. Love to go to the mountains, but the best we can do in Australia is a couple of little hills!

[Hidden in reply to thevvy]

Bet it’s beautiful though...

[thevvy in reply to Hidden]

Yep ... must admit ... not too bad at all

[Jmhanshaw in reply to Hidden]

Acupuncture stopped 90%of my hot flashes. I would not have believed it. Also, sugar triggers hot flashes....stop eating all sugars and you should find relief. Jack H.

[Jmhanshaw in reply to joancarles]

I have had bad hot flashes from Lupron but started acupuncture that eliminated 90% of them! I would not have believed it. I get two treatments a week, no pain. The bad hot flashes are eliminated with just a few “light” ones occasionally. Also, sugar triggers hot flashes. So, I have eliminated all sugar, as much as possible. The literature says quit red meat, sugar, and all dairy products. Jack H.

[LisaBarness in reply to joancarles]

My husband has stage 4 with mets to LN’s liver and bones which is what brings me to this board. I just wanted to chime in on hot flashes because I had horrible ones from menopause. I used to freeze wet towels and when I was woken from the flashes ( all night long!) I would cover myself in my frozen towels - I’d mold them in different shapes so they would fit around my neck, on my chest and little hat shaped ones for my head ( I used a balloon to make these) It was a temporary fix, but it definitely cooled me down and allowed me to sleep a bit better.

I now use bio identical hormones which are amazing and wonder if they would be safe for you guys to use? I get them( estriol/estradiol and progesterone both from a company called Life-Flo ) on amazon without a prescription. Would estrogen cream be an option for those of you using testosterone suppressing treatment? It sure work wonders for women suffering through relentless hot flashes - They are really debilitating, and you guys are dealing with enough lousy side effects to put up with this one too...

[softwaremom00]

Glad you are responding to treatment. Good News for sure.

My husband gets hot flashes from his cancer treatment..(Zytiga/prednisone/Lupron) I think it is the Zytiga.. as my dad used to take Lupron for his prostate cancer and he never got hot flashes.. but every person is different.

My honey also sleeps more but he gets up a lot to go to the bathroom at night.. We have not figured a way to lessen this but we are working on it.

For the fatigue, perhaps some ginseng. He took this during chemo and it helped then. I do not see why it would not help now. I recommend forcing yourself to do some exercise.. it is hard but I think that will also help with the fatigue.

My husband finds this treatment very tolerable especially compared to chemo. But we did survive that.

Sending you lots of prayers and hugs! You can do this.

[Hidden in reply to softwaremom00]

I’m on the same nightly routine...

[Hidden]

thevvy , That’s wonderful news.. Going in the right direction. Sounds like you are in good hands with a dr that gives you his cell# . That is an awesome Dr.. Side effects will arise, exercise and don’t give into chronic fatigue. Hope that you recover,build and keep strength.. and get back to living . Enjoy yourself yourself young man. You ‘re winning this round in order to be here for some years. Good news!

[thevvy in reply to Hidden]

Love the young man bit .... ya made me day cobber, I'll have a spring in me step for the rest of it!

[ARIES29 in reply to thevvy]

G day again thevvy, DR Tan is the best there is & he was my oncologist in Newcastle Mater hospital. Keep swinging that crowbar digger & good luck on that zytiga treatment, i dont know that one yet.

[Hidden in reply to thevvy]

We are all treading water.......

[thevvy in reply to Hidden]

Mate ...I've been treading something since the day I got married ... sometimes my mouth goes under, but most times I can keep me nose just above the level. But if it wasn't for me missus, I'd have given up a few years ago!! She's an absolute angel and keeps me going!

[Hidden in reply to thevvy]

My angel is also my reason to live and endure what we must in order to stay with them as long as possible. Here’s to the good in life. The one by our side.. God bless them in their sufffering along side of us APC wanderers.

[boseley]

I was diagnosed in early 2014, PSA 9 and rising, T3 N1 M0 Gleason 8/9. Age 63. Disease assessed as outside the capsule therefore non operable. Went on Lucrin and the lymph nodes resolved and PSA dropped to 0.1 but suffered sweats, (hot Flushes unless you are American) less strength (running time became 30% longer almost straight away) and continuing weight gain. After about two years PSA started climbing. Late 2016 had RT, 62 Grays in 20 treatment and the PSA rise barely dipped. April 2017 changed to Zoladex and this has continued. T <0.4. All 2017 the PSA climbed rapidly. Had 2 months of bicalutamide to no effect. My PSA peaked at 72. Went on Zytiga Dec 2017 and PSA has dropped to 6 over the last 4 months with a continuing downward trend. For me the side effect of Zytiga are slight weight loss (good) I sleep a bit more, sweat a lot if I work but can tolerate this once up to temperature! Last CT scan shows MANY mets but I have NO bone pain! I am incredulous!

PCa is a difficult beast and it seems you are lucky if your MO finds the drug that controls it. I also go to a Dr Tan and am very pleased with my current status.

I hope you are as lucky as I have been!!

[Hidden in reply to boseley]

No pain,, that’s fantastic .We both are fortunate at this point you and I . I’m enjoying a good status now,and so it goes .. I,wish you well,with good health and a happy spirit ..

[BigRich]

Keep an eye on your random glucose levels and your A1C score.

Rich

[thevvy in reply to BigRich]

Hi BigRich ... glucose is on the books along with a heap of other stuff (3 weekly blood test for 3 months) but what the hell is A1C score?? Haven't heard that one before

[BigRich in reply to thevvy]

Please google it.

Rich

[thevvy in reply to BigRich]

Rightyo ... Got ya!

Been doing that for a few years ..last test was Wednesday with a fasting reading of 2.7. So not too bad so far.

[BigRich in reply to thevvy]

My ADT medication brought it up from 5.8 to 7.7; it looks like metformin is on the horizon.

Rich

[Scruffybut1]

Did your Dr Tan do Oncology at Charing Cross Hospital, London?

[thevvy in reply to Scruffybut1]

Don't think so. His training was in Australia, namely Adelaide & Sydney.

He currenly has a private practice in Tennyson Centre in Adelaide, but also does public consulting in the Royal Adelaide Hospital. (RAH).

I had a 1 hour consult with him and a PCa nurse and it cost me nothing!

A 10 minute skype consult with the Urologist was $168!!

[Hidden in reply to thevvy]

Long live the Uros bank accounts!

[Jmhanshaw]

I have been on Lupron for 15 months with awful hot flashes until I discovered that acupuncture eliminated 90% of them! I still get a few “light”hot flashes but not the big ones. I was amazed and would not have believed it would work. I get two treatments a week. It has made my life much more enjoyable. Also, overdressing triggers hot flashes. Also, eating sugar triggers hot flashes. So, I have eliminated all the sugar from my diet, no more cookies, chocolate, milk (switched to almond and coconut milk and axtually like it). The literature says sugar feeds cancer cells and should be eliminated anyway along with red meat and all dairy products. Jack H.

[cfrees1 in reply to Jmhanshaw]

I added magnesium to my nightly supplements and my hot flashes are almost gone. I can't say for sure it was the magnesium or just diminished over time. I've been on Lupron for 2 1/2 years so far and now, I usually throw the blankets back for a couple of minutes each morning after I get up to pee. Otherwise, I'm pretty comfortable in a tshirt. By the way, sugar has not been connected to PC, at least nothing proven.

[Jmhanshaw in reply to cfrees1]

Glad to know about magnesium. I might try it to,even though my hot flashes are mostly resolved.

[cfrees1 in reply to Jmhanshaw]

It might totally be a coincidence. But I read it on a website for menopausal women as something to help with hot flashes so I thought I'd try it. There are other benefits to magnesium and most people don't get enough in their diet so, what the heck?

[Hidden in reply to cfrees1]

Helps with calcium uptake.

[thevvy in reply to cfrees1]

Thanks cfrees .... I'll add that one to the list ... pretty soon won't need to eat dinner ... just take me pills and go to bed ...haha

[Hidden in reply to Jmhanshaw]

All good moves , I believe... I’m doing much of the same..good luck!

[Stegosaurus37]

How the hell can I get your oncologist? Mine thinks it would cost him $100 to say "Good Morning." And super good on ya for the Skype consultations - I've been wondering when the medical profession was going to come into the 21st century.

It may be just my experience but the oncologists here have written me off and I've been having to educate myself. The brothers on this site are the best - lots of great info here. And we're all on your side!

[Hidden in reply to Stegosaurus37]

To write you off is foolishness .. many Doc can’t think outside of box....

[Stegosaurus37 in reply to Hidden]

I think it's partly the large medical system. They have a lot of patients to see and can't really spend any time with you. So I'm a 75 year old Gleason 9, stage 4 hunk of meat. They are used to the standard procedure and don't get outside that. I'd read on this site about one guy in England who was doing prostatectomies on stage 4s - which is normally not done. His theory being that you remove the mother ship. Sounded reasonable so I floated it by my urologist. She said she wouldn't feel competent to do such an operation. OK, that answers that. We'll spend time with those that the standard drill will work on.

[Hidden in reply to Stegosaurus37]

I love your sense of humor.. Thank you... “ the standard drill” excuse my French , but jackasses.!! If you do ( only ) what they say, you (will ) fall into their dismal stats .. 75 yr old hunk of meat! I,like your attitude. You are a bad ass.. I stiil have my prostate also, ain’t no gettin rid of it now. Stay strong Stego ! Take care...

[Stegosaurus37 in reply to Hidden]

Well, you didn't expect me to get any kind of wimp cancer that was just going to roll over, now did you? Any cancer I get will be TOUGH!

Every day is a good one - keep a strong attitude and keep going strong!

[Hidden in reply to Stegosaurus37]

Yah... mine tried to kill me right from the start.. The price we pay for being a man. women get other terrible cancers but this one is tailored for us macho men.. macho was the first thing to go then the balls.. strength in spirit and attitude kindness to others, that’s what make a man . Not winning the decathlon . APC is our nemesis and our goal is to out pace and outlast this internal killer. Besides that, enjoying the rest of what life has to offer aside from APC is the goal. Take care Stego!

[Hidden in reply to Stegosaurus37]

My radiologist has told me he’s going to turn my tumor to dust killing it all. My tumor is out of the prostate so I have to do the radiation anyway. I asked about cutting out the big part so a surgeon called me and gave me that option. He said he would have to take all the surrounding area affected which meant my rectum and some muscles. Not sure of the side effects of the proton therapy and my biggest concern is the rectum getting burned up. And then there is the cancer. Guess I’ll go with getting rid of it first and worry about the rest later.

[thevvy in reply to Stegosaurus37]

Sorry .... I'm not giving him away for anything. Lots of laughing and jokes. Went in all doom and gloom, and came out laughing and joking. (for a while at least ..... lost me car in the car parks under the hospital ... took 3/4 hour to find the bloody thing ... me, the wife, and 3 volunteers from the hospital. Saw the funny side eventually ..haha)

[Stegosaurus37 in reply to thevvy]

Well, when I bought a new horseless carriage, wouldn't you just know it would be the most popular model in the most popular color in the Pacific Northwest? So there's often three or four just like mine in the parking lot. Fortunately I have a distinctive license plate, but I take it as a test of my memory recall (an anti-chemo reaction exercise).

[Hidden in reply to thevvy]

Thank god you made it out of the dam hospital... even in our darkest moments loving relationships can share a moment of humor. Keep him smiling ... make sure you are eating and slepping.. The care taker thing is a test.. of wills and spirit... thanks for taking and loving him. I have no worries about him . He’s in you loving arms.. a lucky man. Glad he’s out. Peace to you both..

[Hidden in reply to thevvy]

I really want to come to Australia. It looks so relaxing. Watched all the episodes Rake and Offspring. What a sense of humor. Please tell me it’s not just television.

[thevvy in reply to Hidden]

G'day Carlo

How ya goin ...... Yeah we are pretty relaxed, especially out here in the country. City folk tend to be a bit more up tight, but ya get that in a big town! If you ever make it to Oz, give me a shout. I would love to show you around all of the bits that AREN'T in the tourist brochures. They're the BEST bits! lol

Look after yourself and stay positive. We mightn't be able to beat this bastard of a disease, but bloody hell, we can give it a good run for it's money, and have a good time while we're at it.

All the best cobber

Thevvy

[Hidden in reply to thevvy]

Someday!

[LisaBarness]

My husband has stage 4 with mets to LN’s liver and bones which is what brings me to this board. I just wanted to chime in on hot flashes because I had horrible ones from menopause. I used to freeze wet towels and when I was woken from the flashes ( all night long!) I would cover myself in my frozen towels - I’d mold them in different shapes so they would fit around my neck, on my chest and little hat shaped ones for my head ( I used a balloon to make these) It was a temporary fix, but it definitely cooled me down and allowed me to sleep a bit better.

I now use bio identical hormones which are amazing and wonder if they would be safe for you guys to use? I get them( estriol/estradiol and progesterone both from a company called Life-Flo ) on amazon without a prescription. Would estrogen cream be an option for those of you using testosterone suppressing treatment? It sure work wonders for women suffering through relentless hot flashes - They are really debilitating, and you guys are dealing with enough lousy side effects to put up with this one too...

[Hidden in reply to LisaBarness]

Women can relate to us APC menopausal dudes. You really had terrible hot flashes. I can’t complan. Mine pale in comparison.. Good luck to your husband and you. May you become lose and more loving in this battle of attrition ... peace to both...

[Hidden in reply to Hidden]

Close,,,sorry spl ck..

[Jmhanshaw]

Acupuncture has almost totally resolved my hot flashes. I would not have believed it. Get two treatments a week. Also I think sugar triggers hot flashes. I quit most all sugar too. Jack H.

[Hidden in reply to Jmhanshaw]

That’s super good! When I cheat on sugar for a few days in a row I feel bad.. I believe it to be terrible for us... whatever you do? Don’t say sugar kills PC or a hailstorm of rebuttals will rain down on us... touchy subject for some..