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Started Chemo Yesterday, Cautionary Tale for All

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User
Posted 18 Aug 2016 at 21:24

Hi, yesterday I stared the first of 10 cycles of Docetaxel yesterday. Quite devastated about everything. I was diagnosed in November 2011 with PSA 217 and Gleeson  4+4=8. After several years being treated by Urology, I exhausted the usual hormone treatment, Cypoterone Acetate and then Bicalutimide. My PSA started to rise and was over 7 at that point.I still receive Prostap every 12 weeks.

In January 2015 I saw the Oncologist who put me on Dexamethasone which I have been on for the last 20 months. All of this time my PSA was always less than 1, usually 0.8. However, the downside was that I put on a massive 4 stone in weight. Putting on the weight was the price of the prostate cancer being dormant. Or so I thought.

I mentioned at my three monthly appointment that I was feeling breathless. However I thought to myself, who wouldnt, carrying around the equivilant of a sack of potatoes. However, The oncologist arranged more CT scans and on my next meeting with him said there was something showing up on my lungs and arranged for me to see the lung specialist. After lots more scans he thought it might be infection. I had a bronscoposy procedure and yes more scans and two weeks ago he said that unfortunately it appeared that the symptoms were in keeping with metastatic prostate cancer. Arrangements were made to see the Oncologist urgently.

Upon seeing the Oncologist, he told me that I needed chemotherapy, Docetaxel, and arranged for ten cycles to be scheduled in. I could not get my head around this. I asked him how this could happen when my PSA has been continually low? He explained that "sometimes when the prostate cancer becomes aggressive, it does not produce PSA". WTF? where is this written down in handbook 101?

So my advice to anyone, who like me was very happy after every appointment, coming away thinking everything is OK because the PSA is virtually non existent, to listen to your body. Do not dismiss any feeling in your body as nothing to do with prostate cancer because of your own personal low readings. Ask the questions and don't think you are being paranoid. 

I am now in a place where I knew I would be some day, but was just not ready for it.

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User
Posted 18 Aug 2016 at 21:24

Hi, yesterday I stared the first of 10 cycles of Docetaxel yesterday. Quite devastated about everything. I was diagnosed in November 2011 with PSA 217 and Gleeson  4+4=8. After several years being treated by Urology, I exhausted the usual hormone treatment, Cypoterone Acetate and then Bicalutimide. My PSA started to rise and was over 7 at that point.I still receive Prostap every 12 weeks.

In January 2015 I saw the Oncologist who put me on Dexamethasone which I have been on for the last 20 months. All of this time my PSA was always less than 1, usually 0.8. However, the downside was that I put on a massive 4 stone in weight. Putting on the weight was the price of the prostate cancer being dormant. Or so I thought.

I mentioned at my three monthly appointment that I was feeling breathless. However I thought to myself, who wouldnt, carrying around the equivilant of a sack of potatoes. However, The oncologist arranged more CT scans and on my next meeting with him said there was something showing up on my lungs and arranged for me to see the lung specialist. After lots more scans he thought it might be infection. I had a bronscoposy procedure and yes more scans and two weeks ago he said that unfortunately it appeared that the symptoms were in keeping with metastatic prostate cancer. Arrangements were made to see the Oncologist urgently.

Upon seeing the Oncologist, he told me that I needed chemotherapy, Docetaxel, and arranged for ten cycles to be scheduled in. I could not get my head around this. I asked him how this could happen when my PSA has been continually low? He explained that "sometimes when the prostate cancer becomes aggressive, it does not produce PSA". WTF? where is this written down in handbook 101?

So my advice to anyone, who like me was very happy after every appointment, coming away thinking everything is OK because the PSA is virtually non existent, to listen to your body. Do not dismiss any feeling in your body as nothing to do with prostate cancer because of your own personal low readings. Ask the questions and don't think you are being paranoid. 

I am now in a place where I knew I would be some day, but was just not ready for it.

Chat ▲

User
Posted 19 Aug 2016 at 09:33

Sorry to read your news Norman. It is possible of course that the lung mets have been there since the beginning but have only just become significant enough to cause symptoms?

As many on here are aware, my father-in-law died on active surveillance with a PSA of 1.2 - because it was falling rather than rising, no-one detected that the cancer was spreading to all his soft organs. Sometimes as the cancer becomes more advanced it stops producing PSA to conserve all its energy for multiplying instead.

The other possibility is that you have a type of prostate cancer that doesn't produce PSA - or your original cancer was routine but elements of a rarer one have now come along. Were you diagnosed with adenocarcinoma originally? It would be useful to confirm this as a couple of the rare non-PSA producing types are also particularly likely to go to the lungs and are notorious for being non-responsive to hormone treatment. Fortunately, chemo is usually very effective on these types.

Have you got your pineapple chopped up and frozen? Sucking frozen cubes during the infusion apparently helps to protect your mouth from some of the more unpleasant side effects like ulcers and that horrible metallic taste. I have something in my head though about people with heart problems shouldn't have pineapple so best check with the chemo team?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User
Posted 19 Aug 2016 at 07:13
N

Thank you for your advice, the subject of zero PSA with certain cancers has been mentioned on here before. I sometimes worry about aches and pains and they are often dismissed as " it's because you are getting old".

Hope the chemo has a positive effect for you.

Thanks Chris

User
Posted 19 Aug 2016 at 09:05

Sorry to hear that normaningram. As you say, that was for the future and the future is now for you and it must be hard to take it all in when you haven't reached the stage where you would expect to have problems.

Thank you very much though for posting and reminding us all not to be complacent. It's easy to put aches and pains down to getting older like Chris says but we shouldn't just assume that's what it is.

I too hope you get benefit from the chemo.

Best Wishes.

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 19 Aug 2016 at 09:11

Sorry to hear about your experience; hope the chemo makes a difference.

But "Cautionary Tale" is exactly right; PSA is never more than a flag; and with advanced PCa, it can be misleading ... as indeed it can during treatments.

Never let PSA lull you into a false sense of security.

Thanks for posting, and Good Luck!

User
Posted 19 Aug 2016 at 09:33

Sorry to read your news Norman. It is possible of course that the lung mets have been there since the beginning but have only just become significant enough to cause symptoms?

As many on here are aware, my father-in-law died on active surveillance with a PSA of 1.2 - because it was falling rather than rising, no-one detected that the cancer was spreading to all his soft organs. Sometimes as the cancer becomes more advanced it stops producing PSA to conserve all its energy for multiplying instead.

The other possibility is that you have a type of prostate cancer that doesn't produce PSA - or your original cancer was routine but elements of a rarer one have now come along. Were you diagnosed with adenocarcinoma originally? It would be useful to confirm this as a couple of the rare non-PSA producing types are also particularly likely to go to the lungs and are notorious for being non-responsive to hormone treatment. Fortunately, chemo is usually very effective on these types.

Have you got your pineapple chopped up and frozen? Sucking frozen cubes during the infusion apparently helps to protect your mouth from some of the more unpleasant side effects like ulcers and that horrible metallic taste. I have something in my head though about people with heart problems shouldn't have pineapple so best check with the chemo team?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Aug 2016 at 11:51

Norman,

Very sorry that your PCa has further advanced. PSA is generally a helpful indicator of how PCa has progressed but is not precise and not always reliable. This is quite a long but interesting videoed lecture that has been posted before but I give the link again as it worth seeing. It includes the fact that it is comparatively rare but in a few cases cancer has progressed with as little as zero PSA . Dr Kwon advocates aggressive treatment when cancer sites are found as left untreated these are potential factories for creating cancer cell mutations. https://www.youtube.com/watch?v=NkqizmvqJPo

Barry
User
Posted 19 Aug 2016 at 16:01

Norman, it is not inevitable that you gain weight whilst on ADT, nor is it inevitable that the prednisolone used in combination with abiraterone puts the pounds on. In both cases, it is important to maintain your "fighting weight". Simple physics tells us that in a closed system, eg, the human body, energy out (in calories burned through vigorous activity) equals energy in, that is the sum of the calories in the food we eat. Your four stones gained is a very serious warning to you, probably more than the suspected Mets, and a lesson for us all. This damned disease is fought more effectively if one is fit, not overweight, and active!
Thank you for highlighting the problem and confessing your own shortcomings! Now get walking, old chap and monitor those pounds and stones coming off!

AC (dog walking in Northants)

User
Posted 19 Aug 2016 at 20:21

Hi, as far as I know, there was no distinction about the type of prostate cancer, indeed I didn't think there were different types, just the degree of advancement. I have the frozen pineapple ready for the next infusion, thanks!

I have not had abiraterone yet. I have had 20 months of dexamethasone. I have always been physically fit and I walk everywhere, including a hike at the weekends of at least 8-10 kilometers. The weight gain was down to the steroid, not inactivity or eating too much. I think I started a thread on here about six months into the regime that my face had rounded so much I did not look like my passport photo anymore. Incidentally, since stopping the dexamethasone on a daily basis, two weeks ago, I have lost 3 kilos.

Thank you all for your kind support. I will let you know how I am progressing.

User
Posted 19 Aug 2016 at 23:18
Sorry to hear this Norman, it must have been an awful shock. Low PSA does concern me too as it doesn't necessarily (as you know) mean you are safe. Our consultant told us on our last visit that in John's case he doesn't take much notice of his low PSA but takes notice of his symptoms and if they change. John has been breathless for a long time but it seems that the meds (he takes a lot) are most likely responsible for this. He has had various scans so I hope that's true!

Thank you for sharing and reminding us that PSA is only one diagnostic tool, how you feel is equally as important.

Take care, I hope you do well on the chemo.

Lots of love

Devonmaid

User
Posted 19 Aug 2016 at 23:47

Norman, there are at least 27 different types of prostate cancer, your type should be written on the results letter you received after your biopsy? Or your GP or nurse specialist should be able to tell you.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Aug 2016 at 00:01
Not sure about the pineapple but grapefruit is a definite no no with heart problems.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Aug 2016 at 01:14

Ha ha ha - you can tell I don't spend a lot of time in the fruit aisle!!!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

 
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