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HighCadence

My story - 16 years with metastatic prostate cancer - I’ve had just about everything

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HighCadence

Hi everyone, I'm a new member to this site, but a long-time PCs sufferer.

Here is my story:

 

Diagnosis

Date: November 2002

Age at diagnosis: 37

Age now: 53

 

Treatment

1.       Chemotherapy - Paclitaxel, Carboplatin, Estramustine - for 6 months

2.       Intensity Modulated Radiotherapy - 81gy over three months

3.       Zolodex - with a break in 2009

4.       Zometa - lots at first, now every year or so

5.       Cassodex - added to Zolodex for a short time - didn't help

6.       Abiraterone - worked for almost 4 years (switching from prednisalone to dexamethasone extended its efficacy)

7.       Enzalutamide - for four months. Had all the major side effects except fits, and it didn’t do much for the psa so stopped 

8.       BRCA2 mutation confirmed. 

9.       Trial for AZD6738 and Olaparib (a PARP inhibitor that was supposed to work well with BRCA2) - helped my mets a bit, but not the PSA.

10.     Chemotherapy - Carboplatin and Docetaxel regime. Had to stop after 8 cycles as I was feeling a bit grim/needed regular blood transfusions. 

11.     Three ribs, a bit of spine and some lung removed to clear tumor/met in May 2017.

12.     Brother diagnosed and had his prostate removed - his genetic tests are ongoing. 

13.     Cyber knife for met at T6 in June 2018 - oncologist says it didn’t work, radiotherapist not so sure. 

I think that's it. There might be more. My memory is shot to pieces as a result of the hormone treatment over 16 years.

 

Latest News

I’m still struggling with the effects of my surgery, more than a year after the operation. In simple terms, the operation has resulted in an abdominal bulge linked to the removal of nerves when the ribs etc. were removed.

 

The absence of nerves means some of the muscles in my stomach aren't working - so the bits and pieces behind that area are not being held in place. The hope was the nerves would grow back/other nerves would compensate, but that hasn’t happened. So, there’s a lot of discomfort, plus my breathing has been adversely affected. Adjustments to my sleep apnea machine have recently been made to help with the latter, I’m going to see a surgeon about the former. I’m not keen on another procedure, but it may be a case of having to. One thought I’ve had is to possibly speak to surgeons who work on battlefield injuries and recovery from those. 

Given these side effects, to say nothing of the post operation pain and having to wean myself off fentanyl etc. I sometimes wonder if it was worth having the operation. After a few minutes of self-pity, the answer is always “Of course it was”, I’m sitting here almost 18 months later with a psa of only 4, and without a large tumor that was enveloping my ribs, spine and lung. It wasn’t easy, but I would do it again, if needed. 

 

On the treatment front, the oncologist has suggested a course of Cabazitaxel or a trial. I was very lucky to be offered places on a couple of immunotherapy trials. However, I’ve decided to try radium 223 first. Olaparib makes your cancer less sensitive to gamma radiation, but this is alpha radiation, so we’ll see. 

 

I know that this is only a “holding operation” so that, at some point, I will have to go on one of the trials suggested. But, radium 223 seems to have less of an impact on quality of life, and my psa is quite low/mets are relatively small at the moment - so it’s probably a good time to give it a go. After that, the Ac-225-PSMA-617 PSMA targeting looks quite attractive. I’m following reports on that from numerous places around the world. Hopefully I can get onto a trial after the radium 223 treatment has run its course. If not, then immunotherapy/checkpoint inhibitor stuff will be the order of the day. I’m not going to have another round of chemo, as the impact on quality of life is not worth the likely gains. That’s not giving up - more an active choice of quality over quantity. And I’ll do all the trial stuff before I get to that point. By the way, if anyone has advice on radium 223, please let me know. 

 

Other stuff

When I was first diagnosed 16 years ago, I saw an oncologist at Memorial Sloan Kettering who devised the aggressive chemo I had in 2003 (number one in the list above). That saved my life/kept me alive until Abiraterone came along (which, in turn, helped me to be here now). 

 

He also advised me to take up cycling - telling me that he wasn’t sure why this had a positive impact on survival, but it did. I took his advice to the extreme, ultimately riding up a number of the famous mountain passes of the Tour de France, and dieting hard so that I could keep up with friends at a local cycling club I’d joined. My kids told me I looked anorexic, but I had to lose weight to stay with my friends, because the lack of testosterone in my body meant I was constantly anemic and it was hard to build/maintain muscle.

I’m convinced this has helped me stay alive for so long - which is why I’m worried about the fact that I haven’t been able to ride my bike for the last three years, due to the side effects of treatment, operations etc. I’ve also put on a stone and a half in weight over that period. I understand that there are some ongoing studies into the impact of exercise on pca. My experience is that my body just felt like it was functioning better/properly when I was fit and thin. So, the aim is to get going on the bike and weight front ASAP. I rode my bike for the first time in three years in August 2018, I’m hoping I can build on that despite having to have more treatment. 

 

One last thing, I know there are competing views on the impact of supplements, so what follows might not be music to some peoples ears. At one point or another, I’ve tried everything. At the moment, I’m focusing on a combination of Ursolic Acid, Reservatrol and Curcumin. I’m convinced this has helped keep my psa low/unchanged since the time the oncologist told me the cyberknife treatment hadn’t worked - I know, I know, it’s the scans that are more important, but there you go, I believe these supplements help. 

Actually, there’s another thing. I’m having trouble breathing when going upstairs. I’ve had lots of tests for this, and everything is supposed to be okay - it’s just a matter of getting fit again after a few years of tough treatment. I’m assuming that’s right, but playing close attention to it as we all know about the impact of long-term hormone treatment on heart health.

 

Finally, finally, finally, I’m convinced the treatment I’ve had has had an adverse impact on mental acuity. I had tests for this a few years back which were inconclusive - the first test showed I had “clunky thinking” the second, a few years later, that I’d improved. I think I was better in the second test because I knew what was coming and planned for that. The consultant said that could have been the case, but she could only report the test results. Since then, things have deteriorated. 

 

When I was taking Enzalutimide, things were so bad I thought I might have dementia/Alzheimer’s. Some of it is obviously age, but my wife can say something to me one day and I have no recollection of it the next. Literally nothing. Not even the suggestion of a memory. This makes things quite difficult - especially at work, where my boss regularly asks me to update a piece of work that I have no memory of ever having done. I’m not sure there is an answer to this, just thought I’d share it in case it rings true with anyone else, and they have suggestions on ways to get round it/improve things. 

 

In a similar vein, I have peripheral neuropathy problems in my feet post the last round of chemo; persistently low potassium and magnesium levels post Abiraterone – despite regular supplementation; and high blood pressure post Abiraterone – I did take medication for this, and am probably going to have to re-start that.

Right, that really is it, if anyone has any advice or comments on any of this please let me know.

 

Best Regards,

 

David.

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tonymax

David,

 

You are certainly a fighter and I congratulate you for that.

Having to go through all this at a relatively young age must have been very difficult.

I have been on continuous hormone treatment after a failed radical in 2003 - am now 72.

Added Enza to Lucrin mid 2014 at PSA 69 - PSA currently stable at 1

Side effects not as severe as yours but similar profile.

Check out my history details on this site - happy to talk further as desired.

Your plans make sense to me and I am sure other members can add their experiences to build a bigger picture.

Jim Marshall and I just back from PCRI (Prostate Cancer Research Institute) conference in LA.

Will be distributing material from there shortly - check out their website if you have not already.

Encourage you to attend our monthly teleconference if convenient - note you are still working.

Am sure many of us happy to talk at a convenient time.

 

Regards           Tony Maxwell

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HighCadence

Thanks Tony. Can’t deny it was hard at the start - partly because there was no one of my age to talk to. Anyway, I’m glad to hear you are doing well.  I’ll check out the website and try to take part in a teleconference whenever possible. Thanks again. Regards. David. 

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Charles (Chuck) Maack

Well, new friend David, I must first say I am impressed by the knowledge you possess regarding your cancer that tells us you made it a point to find out “what in the world is this “prostate cancer” that has attacked my body?”  Though you may be experiencing thought/remembering processing, you certainly did well in your explanation of your treatment history here.  As an American, my attention was drawn to the fact that you visited Memorial Sloan Kettering Cancer Center (MSKCC) in New York early on to make sure you were getting the advice of specialists.  In that you are posting on this forum, do you rather live in Australia? I do feel badly for what you have been experiencing and particularly for one who was so young at initial diagnosis.  Could you relate to us symptoms you experienced back then prior to that initial diagnosis?  Would just like to be aware if there were signs of cancer development but you were unaware of those signs thus not visiting a physician until metastases had already invaded other organs than the prostate gland. 

 

Regarding Xofigo/Alpharadin/Radium-223:

 

My Medical Oncologist, whose specialty is treating bone marrow issues, remarked that if you are to be prescribed Xofigo/Alpharadin/Radium 223 for bone/bone marrow pain, it is IMPORTANT that your White Blood Cell count/WBC, Hemoglobin/HGB, and Platelets are okay before being administered since this medication can otherwise cause severe low count of the levels.  Likely necessary for close attention with regular check of those levels once administered Xofigo.  So, certainly discuss this with your treating physician if Xofigo is being considered.  Information in this reference includes side effects that might occur: 

http://tinyurl.com/kgdbjc5  The following is an excellent paper by top Urological Oncologist A. Oliver Sartor (Tulane University Medical Center, New Orleans) regarding “Radium-223 Properties Conducive to mCRPC Care”  (aka Alpharadin)    http://tinyurl.com/bqwe4k4 

 

Regarding your shortness of breath when climbing stairs:

You should make certain that you are not experiencing any blood flow issues that could then include blood clots, since with any blood clots traveling to the lungs, that could cause pulmonary embolism/blood clots forming at lung entries.  I experienced double pulmonary embolism to both lungs simultaneously twice and am extremely fortunate to still be alive today.  I had no forewarning for the first one since I suddenly felt like a bat had been swung connecting with my chest – thought it was a heart attack.  Fortunately, rapid action by emergency medical technicians (EMT) and the clots leaving just a tiny opening for air, saved my life.  The second episode occurred more slowly wherein, like you, I was experiencing difficulty having regular breaths as I climbed up then down our stairs.  A daughter had sense of mind to rush me to the hospital emergency room where, once again, blood clots were clogging both lungs, but also once again, just enough space was there to allow some air flow.  I live forevermore with the blood thinner warfarin/Coumadin to keep my blood thin enough that blood clots cannot form

 

Really nothing much more I can offer since what you supplied shows, at least to me, that you are right on top of your research, study, and recognition of those medications/treatments available that will hopefully prolong your life.  I certainly wish you well! 

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HighCadence

Thanks Chuck.

There were no symptoms apart from some pain in my groin which I put down to overdoing things at the gym. I had had an operation on my arm for carpal tunnel issues, so my surgeon scanned me when I complained about my groin.  Scan led to an ultrasound and blood test and the rest, as they say, is history. 

I live in London, but was very fortunate to be able to access the resources of MSKCC which had been recommended to me by US colleagues. 

I’ll make sure that I have some tests for clots. The last time I mentioned problems they immediately gave me a number of scans and checked blood. I’ve also seen the top heart guy in London - you can’t be too careful tho. 

Thanks again. 

David. 

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Charles (Chuck) Maack

Oops, I just noted that you live in London!  As a career U.S. Navy man, I was assigned there from January of 1970 to May of 1974.  Love the country, loved our neighbors; my family and I enjoyed that tour of duty.  Our youngest/2nd daughter was born at RAF Ruislip in 1970.  Sadly, all those great neighbor friends we made have passed on.  I will be 86 years of age this December, was diagnosed in November 1992, had open radical prostatectomy in December, then salvage radiation April/May 1993, recurrence November 1996, and the variety of androgen deprivation medications including Zytiga/abiraterone and Xtandi/enzalutamide every since but, thankfully, short of chemotherapy - thankfully they have enabled me to continue these 22 years since recurrence.  Like you, when my cancer returned, I deeply involved myself in research and study of our insidious men's diseases and have served as an online mentor to other prostate cancer patients and their caregivers throughout the world ever since. www.theprostateadvocate.com 

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HighCadence

Well done you - sounds like you’ve been through a lot as well. Good luck for the future. 

Someone once said “no one will care more about your PCa than you” I try to remember that whenever it gets hard sifting through research and feeling that I can never become an oncologist over the course of a few days!

 

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Patrick Turner

Hi HighCadence, 

What a struggle you have had! and more to come.

I have visions of you anorexically cycling up Mt Ventoux in France, and what can I say? I found there was never any shortage of maschistic cyclists in the groups and clubs I used to race or ride with.

All had The Most fabulous health compared to the general population that is mostly allergic to any exercise and likes to sit around eating too much sugar et all.

I've cycled about 240,000 km so far, with 135,000km since 2006. But it didn't stop me getting real bad dose of Pca but it did allow me to cope better with what causes a lot of depression in some men who get a life threatening problem.  

 

I am 71, and have ZERO desire to cycle anywhere in France and I am happy doing a few km around my little city Canberra with The Finest sealed cycle tracks and low traffic density on roads.

Right now I am on Day 4 after last Docetaxel, and it appears to be useless so far, so docs might get me something better when I confer with them in 2 weeks.

I can't just cycle down a road to Sloan Kettering or any other high profile expert in USA, but it does seem I can get Lu177 and Radium 223 here now, and both of these would have helped you in the past, but they arrived a bit late for you, although maybe not too late.

We have all to realize that even with the very best decisions and treatments, Pca can still win, and most of those who secumb to Pca try to fight it as much as possible, especially when young enough to have a dream of more life. 

I think my cycling has kept me sane and level headed and sharp enough to work out problems and live OK without any hint of serious mental decline yet. I don't need to do crossword puzzles to stay alert; while cycling around I have to watch the risk of being run over by motorists and watch out for many other hazards, and that is all far better than sitting in a chair reading or crosswording, or otherwise falling apart. 

I never had very good athletic genes, I was always a plodder like my mother, who I never ever saw raise a sweat doing anything, but she made it to 98. Her last 25 years were much sitting though, and I saw what thay did to her mind. Not everyone can be bright eyed and bushy tailed all their life. My dad was far more active, but lost to melanoma within a year at 60, his activies kept him young. Aunty Destinee can have other ideas about  anyone's life, she's a rather inconvenient entity in all our lives, and she knows all that doctors might ever do, and there are some things we just can't avoid. 

I might get something from Dr Lenzo that helps before its too late. Lots of worry though, and Radium 223 after chemo has lowered white cells is one worry.

I have had Neulasta after each chemo, last one boosted white cells several times before they got lower again, so I don't really know if I'll ever get Ra223. Good for my bone mets.

I'll even cycle a bit today; its spring weather now here, and its a nice fine day.

The cycle rides sure make the day better after I've been out for maybe 20km, not fast, and all I have to say to the smug young whipper snappers as they over take me is "What took you so long?"

Patrick Turner. 

 

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Feurmann

Hi David

 

great to hear from you. Your story is compelling in a number of ways. Let me first, however, join others in saluting your determination and tolerance for pain. I personally take a lot from the fact that you are still around so long after diagnosis, and have invested so much in your treatment and survival. 

 

First, the shortness of breath. Another poster made a suggestion about this, and he is obviously speaking from experience. I too had shortness of breath; in my case, this came from nowhere. It was originally attributed to asthma. (This was the year of the "thunderstorm asthma" in Melbourne, which killed nine people, if I remember correctly.) To cut a long story short, it was found eventually to be caused by low iron. You may have had this checked; if not, it can't hurt. Along the way I had a colonoscopy, two endoscopies, a gastroscopy, and a pill cam. (The last is what it sounds like, a vitamin capsule-sized camera that takes pictures of the small intestine.) None of this discovered anything abnormal, certainly no bowel cancer. My gastroenterologist wanted to keep going, but I said "No more scopes". I just have an iron supplement each day, and am back to normal.

 

(I had a radical open last November followed by stereotactic radiation treatment. The latter was unable to prevent more mets forming, all thankfully in bone. There are too many of these for more radiation, so I have just started ADT and chemotherapy (Docetaxel). I have had a few side effects so far, more irritating than anything else. So I intend to stick it out. It is, of course, such an individual thing as to how it will affect one, and it is everyone's call to start or discontinue treatment.)   

 

Exercise is great. I have had a week off from gym, having not really felt up to resuming. However, I know I need to push myself. I decided to start a degree next year, and am still to choose which one. My thinking is that, in three years' time, or so, I would like to have been thinking about literature instead of about prostate cancer. Should I not get there, of course, it won't matter. But I won't put my life on hold any longer.

 

We visited London a couple of years ago, and stayed in Bloomsbury.

 

All the best for your self-propelled journey!

Guy  

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alanbarlee

Hello David,

I like your nom de' plum (High Cadence) - a brilliant cycling metaphor for your aggressive approach to dealing with your disease! You've certainly been throwing the book at your early onset PCa (sorry - another metaphor....)

 

Like Tony (and you), I've been dealing with Stage 4 prostate cancer for the past 15 years - so far successfully. After a failed open RP,  lymph node mets were eventually located with FDG PET/CT.  I graduated to intermittent then permanent ADT3 including Casodex and Avodart), and then, for the past 5 years and counting, to Zoladex and abiraterone plus prednisone (switching to dexamethasone a year ago), maintaining Avodart throughout. My regular supplements are calcium, vitamin D3 and fish oil, with curcumin added more recently. No chemo to this point, with PSA holding at 0.02 mg/ml.

 

Adding some brief responses to your excellent and well-informed summary:

 

1. Keep in mind Denosumab (RANKL inhibitor) as an alternative to Zometa for bone protection.

 

2. Corticosteroids (prednisone or dexamethasone)  commonly do result in lost muscle mass and strength, and do need an aerobic and resistance exercise program - for which there is now overwhelming evidence of both QoL and OS benefits with many cancers. Here in Oz, well-informed cancer centres are not only cooling the extremities during chemo infusions to minimise neuropathy, but also putting their patients on exercise bikes immediately after. Bike riding uphills as you were doing is a great choice, but if you have trouble getting back to this on a regular basis, exercise physiologists with cancer training run individually designed group programs in gyms, which also provide valuable social connections.

The dose / duration of steroids are cumulative, and in the context of abiraterone, it's a matter of balancing muscle degeneration against possible high blood pressure and low potassium. I'm currently using dexa at a low 0.5 mg / day, with no BP or K issues. Slow-K and / or lite salt might be worth considering in your case if these side effects are continuing.

 

3. A common side effect of chemo, especially platins, is neutropaenia (low white cells), which among other things increases susceptibility to infections like pneumonia. A friend with oesophageal cancer who encountered this issue got spectacular benefit from a sub-cutaneous  infusion each cycle of pegfilgrastim (Neulasta). If you start back on chemo, you might want to raise this with your medonc. Another possible topic might be using a lower chemo dose possibly offset with increased frequency. Replacing docetaxel with cabazitaxel is clearly worth considering, also, although there may not be much data yet on the combination with platins. 

 

4. There a now a number of PARP inhibitors that have come along since olaparib (Lynparza). You can find more on these via Google, prior to a chat with your medonc.

 

5. There's some recent evidence that pembrolizumab (Keytruda) can be very effective, but only for 10-15% of PCa patients. I'm not sure if there's a stratifying test.

 

6. 223-radium certainly seems like a good option for bone-only mets. We're working on getting the alpha radiopharmaceutical  onto our subsidised list here in OZ - better late than never!

 

7. 177-Lutetium.PSMA (targeted beta radiopharmaceutical) is currently on multi-centre trial in Oz, following very promising studies in Germany and at a leading outfit in Melbourne (Peter Mac). The prospects for this are looking very good, with some patients getting total remission.

 

8. Stereotactic radiation (SABR or Cyberknife) is an important way to deliver high doses to precisely located tumours. We've had good results in some centres in hitting mets that are causing side effects of their own (including current experience with the same friend I referred to above). I'd be inclined to follow up on the opinion of your radiotherapist - including further imaging to track efficacy.

 

9. I guess that some degree of cognitive impairment / short term memory loss goes along with extended cancer treatment .However, there is increasing evidence that regular aerobic exercise, intellectual challenge and social contact are all positive prescription for this and other side effects influencing quality of life.

 

That's about all I've got, David. Keep up your great work - including your generous sharing.

 

Cheers,

 

Alan

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tonymax

Sorry David did not notice you were in London.

Might however facilitate attendance at teleconference given you are still working.

Jim might be able to help re phone arrangements.

 

Regards          Tony

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HighCadence

Hi Patrick - you must have been stalking me! Mount Ventoux is one of the hardest climbs i've ever done!

Glad to hear you are still cycling - it doesn't matter what you do, just that you do it. In my view, cycling is always the answer - on all sorts of levels.

I hope you can find something that works better for you.

Parental genes ... hmmm ... don't think i did well there ... my dad died of cancer aged 41, and what with me and my brother. Oh well, you get what you are given and just have to make the best of it i guess. Interestingly, one of the geneticists told me that the BRCA2 mutation started in Roman times ... makes me think of the Monty Python sketch - "What have the Romans ever done for us" :).

Keep riding and good luck.

David

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HighCadence

Thank you Guy,

Your journey with respect to the breathing thing rings lots of bells, I've had tubes inserted in many places without much being found.

Interestingly, I've just had a test for iron to see if that needs supplementing - i'm sure it will.

I've also been told that the magnesium shortage could be having an impact. I take supplements for this and potassium as the two are related, but its hard to get up to normal levels and stay there even with the supplementation.

Good luck with the treatment and the degree - i think that's a wonderful decision. I'm a great believer in assuming you are not going to die (i spent quite a few years with a guy that helped with positive thinking etc and I'm sure that was another marginal help - not least for my long bike rides).

I really hate it when i see the oncologists and they act as if the end is near, i tell them i'm too vain to die at this age. They look at me like I'm mad.

I'm not starting a degree, but i am trying to learn bass guitar, having spent years messing around on a telecaster - this stuff is important.

I look forward to reading about your graduation in a few years time. 

Rgds,

David.

 

 

 

 

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HighCadence

Hi Alan,

thank you - the joke is I'm usually grinding away at 80rpm or less. More Jan Ulrich than Lance Armstrong.

I hope that the Abiraterone works for many years to come.

I'm amazed at the bike immediately after chemo thing - sounds like you are well ahead of us in that respect.

I take slow k and magnaspartate but they don't seem to get me to a normal level however much i take. Maybe its time for infusions?

i had neutropenic sepsis when i was on the last chemo regime. It was odd, because, although i was cold (there was a stand-off over whether or not i would take my t-shirt off in A&E), i wasn't really worried ... until i saw the looks on the faces of the staff who were dealing with me ... then burst into tears (i blame the hormones).

Thanks for the suggestions on other possible treatments.

Keep fighting.

Rgds,

David.

 

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HighCadence

Hi Tony - that sounds good - just let me know details and i will try my best to take part.

Rgds,

David

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Feurmann

Thank you for the encouragement, David!

 

I struggled with the cello for 12 years, starting in my 40s. Best wishes with the bass guitar. To me, having a good teacher was vital. It needs to be someone you are comfortable with. I think a lot of musicians teach because they can't have a career as a performer, and therefore somewhat resent the teaching. 

 

I meant to add, re the mental acuity, you know there is such a thing as "cancer brain" (AKA chemo brain)? So rest assured - university tests show, your experience IS real ☹️ . I have had it too. Stress may or may not be part of this syndrome; of course having cancer is pretty stressful. I have always been fairly vague, and struggle with memory, paying attention, and basic practical things like getting all the items on a shopping list. I was diagnosed a few years ago as having attention deficit disorder - the inattentive type, not the hyperactive. Being prescribed dexamphetamine was a great help, except that it is so stimulating, I can only have 1.5-2 tablets each day, or else it interferes with my sleep. However, I often take 0.5/tablet before going to see my oncologist, to help with taking in the information that he presents. (I always take notes, too.)

 

Best wishes, as always

Guy

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Bert Kore

G’day David,

Tough times for you for so long.

I can’t give you advise but I can tell you my story.

I was diagnosed with stage 4 metastatic prostate cancer last December.

PET scan showed two bad spots on the prostate and one on the spine.

I refused radiation and chemo, my reasoning being that at my age (75) I could do without the side effects

of that treatment and live a normal life as long as possible.

 I did accept hormone treatment, zolodex, abiraterone and prednisalone.

Some side affects but nothing major.

I started investigating on the internet and found interesting  information on canabis oil high in THC. 

Although not recognised by the medical profession, anecdotal evidence offered me some hope.

I procured some oil and have taken minute quantities every day since. PSA went down well and had a second PET scan 6 month after the first.(June this year). Results were excellent. The bad spots on the prostate had disappeared and the spot on the spine had reduced greatly. I took myself off abiraterone and 

 prednisalone. A third scan two months ago showed no sign of cancer on the prostate or spine. PSA at 0.3

I have taken myself off zolodex since. Although there is no sign of cancer on the scans, it could still be lurking in the spine and prostate I was told. So not necessarily a cure. I will have two monthly blood tests to monitor PSA and we will see what happens.

I wish you the very best.

Bert

 

 

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HighCadence

Hi Guy,

I'm sure stress is playing a part as well - especially recently, when it's been all hospital visits and bad news, and i always seem to be behind at work.

Someone suggested a similar drug to me once, but i'm quite bad on steroids etc. so have stayed away from additional meds of that type..

I love my bass teacher - i told him from the start that i might not be able to practice regularly and just wanted to have fun - he's onboard with that, so we have a good laugh - especially when i forget my hydrocortisone (for adrenal insufficiency caused by steroids used with Abiraterone) and can't play a thing :)

D

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HighCadence

Hi Bert,

Glad to hear you are doing well.

Very interesting to hear about your experience with cannabis oil - lots of people have suggested that to me, but without the compound that gives you the high.

I'd be interested to hear other people's experience with it.

Keep fighting.

Rgds,

David.

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Bert Kore

Thanks David

THC seems to be the cancer fighter, more so than CBD.

Taken in minute quantities no high is experienced.

Good luck 

Bert

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Patrick Turner

Hi to HighCadence. Well, I ain't never stalked nobody, and Ventoux is for young men.

If I had a dollar for every steep hill around here I cycled up with racing heart, bursting lungs, and burning legs, I'd be quite rich.

But right now, its Day 4 after chemo, and I feel not quite myself, so managed only 5km to/from cafe for lunch, which seemed to have no taste. I felt wrecked, so I rested, but could not sleep, so went to shed to work on electronics project, with ABC Classic FM radio. I could do that OK without any brain fog. 

 

I inherited my mum's genes for my knees, and they wore out, and in Feb 2017 I had double TKR. Walking was terrible, but I could cycle 220km in week before op.

Anyway, Psa was taking a dive on Cosadex and all went well but Psa rose, so I went onto Zytiga, and that gave more suppression for 8 months. But just 12 months ago I was gaining very good speed on new knees and was riding faster than most in group I had not ridden with since 2013. But then Zytiga brought side effects of causing a kind of pulsing pain in spine on some hills, and very poor tolerance of cycling in hot weather, so yet again I was forced to ride alone.

I cycled 270km in week before chemo, I felt just fine. 

The chemo has not much affected my knees but I often wonder that behind the titanium parts, my leg bones are riddled with Pca, but I might know soon because doc has scripted a full CT scan to see just what bone mets are now seeable. 

Cycling has been a largish part of life, and I raced as a veteran for 6 years in 80s, 90s, then knees ached, so just eased back and did only building work for few years but then knees got worse, and I swapped to electronics for 12 years, sit down work, and put on 20Kg. But I had an arthroscopy in 2005, and magically knees allowed me to ride again and I lost the 20Kg in 6 months, usually with 200km a week. Nothing else could have done that.

But I reckon Pca began about that time, but Psa was low, so nobody worried...... so much worry now.

 

Anyway, I can thank doctors for keeping me roadworthy for so long.

I told 'em I'd marry me bike, and they asked why?

"Because I can go fer a darn ride any old time I darn well like".

Patrick Turner. 

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HighCadence

Hi Patrick,

‘I’m very impressed by how much you are still cycling - even during chemo - wow.

I hope your scan brings good news.

I love my bikes too - so sad that they’ve been unused for so long, but I’ll soon be riding more.

Rgds,

D

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Patrick Turner

Yesterday, day 4 after chemo was the worst day of chemo  cycle. I rode a very slow 5km.

But slept more and feel better now, and might cycle further today.

Anyone who can should walk a mile a day because that too is a mighty good way to keep the demons of negativity at bay. I busted an ankle at 19 so I don't much like walks, so I cycle instead.

Its one thing to have a chronic thing like Pca, but what matters is how anyone handles it. None of us can avoid what is really going to unfold in future, and methinks its no good getting upset about it. Might as well be happy,

and some how that just happens on a bike, or when I am occupied in shed, or there's a smiling face across the dinner table.

 

Today I must arrange time for this next full body CT scan to look at my bones. 

 

At the National Museum in Canberra, there's a nice cafe which serves a good capacino and a cake, and its one of my favs. Nearby, there's a huge skeleton of Muttabasaurus, from about 120 million years ago. It is quite complete, and this creature was 9M long and was mainly a plant eater, but could, if it wanted, snap a mans head off for an entre before tucking into a pile of huge Bunya Pine seeds. 

Anyway, I could not help feeling that I saw a twinkle in this creature's eye sockets when I gazed. I heard that it is dangerous to walk around the Museum after midnight because Old Mutta comes alive, and does a romp about the Lake Burley Griffin, before settling back on his stand before dawn.

Mutta reminds me we all have our time...........

 

Patrick Turner.

 

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DavidW

Similar to many of you I also have a journey since 2006 - the year of my retirement! My last ditch effort is Lutetium at $40,000 for 4 treatments. Last years Cabazitaxel has left me disabled with severe peripheral neuropathy. I can  only walk with a trolley and attempted to walk without aids has caused a couple of tumbles. It's really hard to get back up.  I'm struggling to type with unfeeling fingers.

I'm still on prednisone, Xgeva, Zoladex on advice from the medics. I had radiation on my spine but no pain except shooting pain from neuropathy. Endone controls that.

I won't let docs give me prognosis as I don't want to know But my GP (not oncologists) told me to prepare for the end. I do  admire the positive attitude many of you express. In fact reading this sites' stories is encouraging and makes me feel more determined. Many thanks for sharing.  

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Patrick Turner

Hi David W and to all others,

I have just had 4 x Docetaxel shots and I am suffering reduced / strange sensations in legs and hands, and they do say Cabazitaxel is worse for neuropathy, but supposed to work better than Docetaxel, but then just because experts say this, it does not mean its going to be the case with any patient.

Maybe my cycling helps reduce the neuropathy but I can't be sure, but forcing more blood around my whole body would make the chemo go round and round, and also make whatever repair work the body attempts maybe more effective; to me, sitting in a chair all day after chemo would not be a good thing. So far, my dexterity with hands on workshop has not declined, and I am now doing some good work on  a project. I had both knees replaced 20 months ago, and yesterday and today both knees got that cold feeling that comes from severe knee arthritis which affected me enough to have to quit the building trades. But no knee pains. I am a bit slow on bike, but today was better thann yesdy, and am already improving as I do towards end of 3 weekly cycle. I didn't pedal hard because don't think agravating muscles that are slightly sore while pedalling is a good idea. But

I wonder that chemo works for only one week of every three, so no wonder the failure rate is high.

 

You didn't say what your response was to Lu177. I am hoping to get that soon because I now have such little faith in chemo, and chemo damages a man, and maye Lu177 is easier on body. Docs tslked about getting me to trial of Cabazitaxel OR Lu177, but that seems not good, unless I happened to be assigned to have Lu177, and afaik, I'd have no control on what I'd get. 

 

I am a bit lost for words when someone says they do not want to know a prognosis. My onco said I had 8 years, I said 4, but that was at chemo start, and now I say 2 if nothing works, based on what Psa doubling time now is. Maybe I get less.

Seems like my doc tries to offer hope by saying I could live another 8 years, but then I'd be 79, and IMHO, I'd be a fragile oldie, so what QOL?

But now I want to live, and have to wait to see what happens.

Patrick Turner. 

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