fit blokes with extensive disease

[metungboy]

Hi everyone,
I am new to this forum having only recently been diagnosed with metastatic disease.
I am currently having treatment with chemotherapy and androgen deprivation which isn't a lot of fun as you all know.
I am interested in how people keep fit and well despite their disease. I was moderately fit prior to diagnosis and I was planning a trip to Italy to bike ride with a friend who had recently had one positive node after seven years of cycling through various therapies. To support him I organised a trip for 12 of his friends to Italy to ride the mountains. I had some strange chest pain and when this was investigated it was found to be due to extensive metastatic disease through most of my thoracic spine multiple rib and other bones. This is somewhat ironic!
I am trying very hard to maintain fitness but the ravages of no testosterone make this harder. Has anyone been able to access EPO? My haemoglobin has already dropped 2 g without testosterone and is likely to drop a total of three or four. This does not matter for normal life but certainly makes a difference when you're riding up Italian mountains.
Today I went for a swim as part of my recovery from chemotherapy as I find this helps me feel better. I cannot face it or any exercise for five days from the time of the Taxotere. Any other tips for me?

[DiRi]

Hi - your situation sounds very similar to my husband's.  He has just started ADT with an initial injection of Firmagon.  This has really knocked him - we are still waiting for some radiation to start and possibly some chemo pending the results of a PET scan.  He is pretty fit, but I'm also worried that he may lose this as he has been spending much of the day lying down due to the pain in his back and pelvis.  It sounds as though you're doing a good job with doing some swimming - i've heard that treatment is more effective when some exercise is maintained, so would love to hear any tips also - all the best

[ardee]

As well as JIm Marshall's domestic Aussie group, please feel free to join our weekly UsTOO Answer Cancer Foundation advanced cancer virtual support group run out of the US  - Jim and Paul Hobson are frequent participants. We often speak about exercise, and have several men with advanced metastatic disease who exercise aggressively - one of our regulars actually won a tennis tourney between his 5th & 6th sessions of chemo!!  You will have the opportunity to chat with them directly if the time difference works out.

 

Exercise is a very important aspect of managing your disease - in fact I just hung up from participating in a CureTalk webinar panel on living with advanced PCa ... and we spent some time speaking about the benefits of exercise. Don't forget that resistance work is as important as aerobic - to help maintain strength, muscle mass and bone health.

 

For joining information, you can contact Jim M, or myself at rd@ancan.org. Alternatively visit our website for more information and joining instructions. 

 

 

 

 

[metungboy]

thanks DiRi,

I am also attending sessions with an exercise physiologist who has given me some gentle strengthening exercises to do at home. I am attending a Gym called Keiser. A physio supervises my exercise to make sure everything is lined up and I can already feel some benefit in large muscle strength. I can do none of this when I'm in the week after chemotherapy but by about day five I can have a swim as I said previously and I will begin three like ridinng sessions a week of between 70 and 100 km. This makes me feel almost human again and then I line up again for the bloody poison. I am halfway through the chemo cycles and without the exercise I would be a mess. Even with the exercise I find the process very inhibiting on leading a quality life. I know that it's not for very long, only six cycles of three weeks, but the gain in life length is approximately 17 months and even that is probably over estimating it, in my situation where I have very extensive disease. My PSA has certainly plummeted from 512 now down to 46 after two cycles but most of this will be due to no testosterone. I will continue the treatment and continue the exercise. At least the exercise makes me feel good. Again if anyone has found a way to access EPO to decrease the tiredness associated with no androgens please let me know how you did it. It is restricted to people with renal failure and has to be prescribed by a renal physician. I don't have renal failure but I think it would be quite valid for me to have taken EPO to improve my quality of life when I'm riding with my friends up monstrous mountains. Maybe I should contact Lance Armstrong.

[ardee]

Should have mentioned the tennis player, who also happens to be a doc, was Dx with a PSA >1000! It has now fallen to around 8 - and more than 18 months later he is still playing tennis and rowing .... without EPO! 

Be encouraged!!! ..... onward &upwards, rd

[Bruce Kynaston]

Metungboy,

 

Your situation is such that I feel I must advise against going yo Italy (I assume you are in Australia) and as I note you have extensive bone involvmemt, this may well be the cause of your reduced haemoglobin.

My question is: have you been seen by a radiation oncologist as involved bones may ned treatment unless the current therapy eases the situation? Perhaps it has, as you said "I had some strange chest pain.....".

It would seem prudent to stay close to your medical advisers.

Assoc. Professor Robert Newton at Edith Cowan University is 'big' on exercise and one of his team showed that a program adjusted suitably for one with bone problems could still benefit.

Whether your G P could refer you to an exercise physiologist could be worth consideration.

Best wishes, 

Bruce.

[Bruce Kynaston]

Metungboy,

 

I realised that as soon as I had posted my piece, out was apparent that you had responded to another and indicated that your situation was improved as you were responding to treatment.

that was pleasing to note and also you already were under advice from an exercise physiologist. Sorry to have bored you with 'old hat' information.

Go well!

Bruce.

[Sisira]

Metungboy,

 

All replies have good substance for you. But look at Bruce Kynaston's advice more seriously. Advanced metastatic PCa is not a game! Right treatments at the right time are of prime importance and primary. The rest is of secondary importance. To retain life be ready to give up any thing.Prepare for a battle with courage, you will find a "new normal" Do everything possible to maintain the strength of your body and mind.

Cheers

Sisira

[metungboy]

thanks Bruce and Sisira,

I'm not sure whether I agree with the idea of "prepare for a battle with courage". I don't like to think of having cancer as a battle. The words "battle, fight, struggle, war" are not I think helpful in discussing someone living with cancer. These are military metaphors which potentially cause great distress for patients (like me) with significant disease. Prior to becoming a patient with cancer I was working full-time as a doctor in both primary care and in fact in prison settings. For approximately 20 years I ran an HIV clinic and over my time looked after 83 patients who died from aids in the early days of the infection.I have looked after children and many adults with very bad prognosis cancer. Many patients I observed used the military metaphors in describing their interaction with their illness.

If you think of the interaction with the disease as a fight or battle, then that implies that if you fight harder or battle harder, you have a chance of overcoming the condition. In my experience and in my opinion this puts enormous pressure on the patient (me) and makes the patient responsible for their outcome which is not true. The biology is the problem not the attitude of the patient. Being a patient I am aware of people using these words to me and I find them annoying. People often say to me things like "you will do really well because of your positive attitude to treatment and to life". My reply to that is my attitude will make a difference to how well I live my life, but will make no difference at all to my length of life or my response to treatment. This has been extensively studied and there is not one skerrick of data suggesting that the attitude of the patient with the disease makes a difference to their outcome in terms of life length. There is however extensive evidence that the attitude of the patient to their life and their approach to their treatment makes an enormous difference to the quality of life.

In the past when I had patients with very bad disease I attempted to "immunise them" to this sort of language. This enabled them to be protected from the harm that this language could do. Even the media are part of the problem as they frequently use the military term "breakthrough" when they are talking about minimal medical increase in understanding of the biology of disease. There has been a constant gradual improvement in most medical areas, there are rarely enormous improvements. Mostly when medical scientists and researchers use the term "breakthrough" they are looking for money for their valuable research. You will often hear them backpedalling on the potential benefits of their "breakthrough" but they have to be careful otherwise they don't get the cash. Hearing these words for patients with significant disease is potentially very harmful as their hopes are unreasonably lifted and then brought crashing down when they realise that the advancement was really only in rats and has  nothing to do with humans or is many more years away.

My immunised patients often reported back to me how they'd heard another one of those researchers telling fibs. This protected them from that harm.

So Bruce, the reason for going to Italy to ride in the mountains with my friends is to improve my quality of life. I will be cautious and have taken great care to avoid falling as I realise with a thoracic spine and pelvis and ribs full of cancer a fall could be catastrophic. But to not ride will reduce my quality of life significantly. I will do everything I can to have the most appropriate treatment but I understand the effects are not curative and I have to balance the life lengthening potential with the toxicity of the process.

EPO would improve my quality of life when riding with my friends. I think that is a noble thing to do and I will pursue it with vigour.

I do have some hope for the immunotherapy processes perhaps being more mature when I need them but I'm not going to put off enjoying life waiting for this to happen. My uncle who is in his 90s has non-small cell lung cancer which had a very poor prognosis until recently. He is now on immunotherapy which he is tolerating well and has had a 90% reduction in tumour mass. This is not a cure but is a way of a allowing him to live with his cancer. He is not battling or fighting or struggling he is living well with his cancer. I  hope that one day something like this will be available for men with metastatic prostate cancer.

Ric

 

[ardee]

This webinar "Living Well with Prostate Cancer" presented by CureTalk from earlier in the week will strike a chord with you, Ric. Dr. Paul Schellhammer, former president of the American Urology Association, who lives with mCRPC himself, talks about living with advanced disease. He starts by addressing the military terms you too identify.

 

Onward & upwards, rick.

[Sisira]

Dear Doctor ( Metungboy ),

Obviously I can't match with your esteemed experience in your medical profession and your knowledge in cancer biology and medicine because I am only a layman. To the extent of your philosophy it is difficult to say whether cancer is your friend or foe. Since they are your own cells, only with a genetic malfunction in the DNA, going all out for a war with them can be absurd and as you say the words such as "war", "fighting", killing etc. should be banned from our vocabulary. Although I use some of these words myself related to PCa I respect and agree with your philosophy. If healing can be taken over by a natural process like the body immunity even in the case of PCa, it will be the best but even Provenge as a very costly immunotherapy has not been able to show its efficacy in mCRPC. So we still depend on various drugs and treatments.

Thank you doctor, I learned from your philosophical words.

Best of luck

Sisira

 

[Paul Edwards]

@metungboy I have sent you a PM (personal message) re  EPO. 

 

With the discussion of exercise and advanced prostate cancer, it's worth mentioning again the excellent resource prepared by Movember as part of its TrueNth project with the assistance of Prof Rob Newton & the team at Edith Cowan. Click on this link to read this resource. 

 

The extent & location of your mets may limit the amount & type of exercise that you can do.

[Bruce Kynaston]

I met Robert Newton when I served as consumer rep. at the PCFA Research Committee when pone of his team submitted an application for a grant and I was asked to comment. It was basically very good but would lack numbers, but I expressed a measure of support as the concept had merit.

IT received funding from elsewhere and the report revealed that with care not to stress weakened bones, exercises could be designed for type person's betterment.

The Edith Cowan University team are of excellent standing on exercise physiology, and personally, with intact bones, I am going through a program prescribed by the School of Human Movements, as it was known when I attended, with a 'vengeance' to retain muscle strength and bone density, for I have met several over the years at support groups with weakness , having not been told to exercise when AFT commenced, and one chap with severe bone density loss to have a 'dowager's hump' when some thoracic vertebrae have collapsed bodies.

Bruce,

[Bruce Kynaston]

Ric,

To level with you, I can only report that, less one year, my career was with the Queensland Radium Institute and I treated PCa patients in the pre PSA era. Sadly, I only followed them for 10 years and several were symptom and sign free then.

Things could have been different later.

I defer to your ability to monitor your condition.

Best wishes.

Bruce.

 

[Guest ironic]

Are E-Bikes Fun? Road Bike Vs Road E-Bike - YouTube

 

Have enjoyed my E bike for over 3 years and it has improved the enjoyment of the outdoors. Cycling along the paths by the Woolongong beaches with the wife, it is a great way to keep pace if one needs a little assistance when the legs go to jelly. 

[metungboy]

my legs really go to jelly after the docetaxel but recover somewhat after a week or so. Then it is just no testosterone weakness.

Elictric boos ting couild be the go.

Thanks