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The Treatment is Killing Me!!!!

Rakendra's picture
Rakendra
Posts: 74
Joined: Apr 2013

Let me first make clear that I chose to be treated by Drs. Who I knew might be inferior. I live in the Philippines, and there is no question that treatment here is below Western standards, so I have responsibility.  And, probably the treatment I got would be quite similar to Western treatment, but there is no medical malpractice here and Drs. for sure run a lose ship.  Even though the treatments may have been correct, I feel very strongly that the treatment is killing me and now I need to take control and go down a different path.  14 weeks ago I found out I had grade 4 Pca with many matastases.   At that time, at 81, I was in super health, very strong and weighing 204 lbs.  Now, I weigh 178 pounds, have no muscle, look thin and pale, and feel old and feeble.  I feel that if I were to be hit with a disease like pneumonia, now I would be history because my immune system has been degraded by unending imaging, drugs and surgeries.  Now, instead of showing glowing health, I certainly look like I have a terminal disease.   The Pca has never at any time caused me any problem. No pain, no weak bones, nothing, but the therapy is killing me.  Long ago, I read that one out of three patients with terminal cancer is killed by doctor induced death.  The treatment kills before the cancer can.

  I am sharing this to emphasize that with this disease, you must not only be very careful with the treatment you chose, but you must also be very aware of the side effects of that treatment and how these side effects may become very threatening if not dealt with.

 My first treatment after biopsy was castration.  Castration removes all testosterone from your system.  To understand how serious this can be, first lets look at what testosterone supplementation can do.  No athlete not on TS can compete with an athlete who is.  Even in old age, a great body can be built with TS and an aggressive work out  program.   Without it, there is no chance.  So TS can produce very remarkable gains.  Now, when you remove TS, the exact opposite happens.  As effective as TS is in building, the total removal of all Testosterone will be equally devastating to the body in a very quick and major way.  Perhaps there is not enough understanding of this among Pca sufferers. Muscle tissue is lost rapidly, weight gain can come to the stomach area, the penis may decline in size, extreme tiredness is experienced, and it becomes harder and harder to get up off of the couch.  Your strength simply disappears.  This is one reason why exercise is so important, and also why it is now even more difficult to do.

 

  In other words, when you remove testosterone from the body, it has very severe consequences that MUST be dealt with.  What we are all talking about here is life extension, and ALL aspects must be considered, including the problems created by the treatment itself.  In my case, there is no question that my health and immune system have been degraded in a very large way by treatment, and at the same time, the Pca has been very kind and benign, and never caused a problem.  I have two Urologists who are best friends of each other.  It is now obvious to me that they are very highly interested in transferring as much of my money to their bank account ASAP.  Both encouraged me to take Zometa.  I considered it to be Chemo and did not want to do it, but finally gave in.  And, I ended up paying a very heavy price.  I was deathly ill for three days. Really bad headache, nausea, hard to breathe, could not walk for fear of fainting, bone pain, difficulty eating, and fever.  My wife read the pharmaceutical company’s brochure to see side effects and found this:  DO NOT TAKE ZOMETA UNLESS YOU HAVE HAD AT LEAST ONE HORMONE THERAPY FAILURE.  In other words, I had no business taking this in the first place, and, is it possible that two urologists would not know this?  However, here a Zometa treatment costs $450, and the Drs get a cut, and I am sure they knew this.

    In my case, it now looks like I would have been better off doing nothing at my age, just keep  on with my steroids, my body building, healthy diet and life style. I may have gotten just as much time doing this as getting treatment.  And, for sure, I would be a lot happier and healthier.  I did not make that decision because I have a gorgeous 26 YO Pinay wife who encouraged me to do whatever necessary to be with here as long as possible.

So, my message is this:  This is a very tough disease to deal with.  Correct decisions are never easy, and the side effects of those decisions must be carefully scrutinized.  All the wonderful old timers on this board who take so much time to contribute  say:  Always go to the very best doctors you can find.  Always get several opinions.  And, remember there may not be any easy decisions, and outcomes are never guaranteed are you are always at risk, and you cannot ever tell what traps may lie ahead for you.   Love Rakendra

 

PS: It is now two months since my oriechtomy. My PSA was 200, it is now 9.8.   Is that OK?  By the way, immediately after my testicles were removed, a growth like a tumor began on the right stem that was left.  It just kept growing and growing.  Neither Uro had a clue or a treatment plan.  It looked like a tumor that needed to come out.  I got ultrasound and the diagnosis was consider testicular cancer.  My Uro says no cancer possible because there is no testical and both tested no cancer.  The Zometa has now reduced the size of this tumor by more that 60%.  Any suggestions?

hopeful and opt...
Posts: 1291
Joined: Apr 2009

I feel for you.

I do not have sufficient medical knowledge to comment about your situation, only some non biased common sense based on what you wrote.

Since you are unsatisfied with the medical attention that you are receiving, I strongly recommend that you seek medical attention elsewhere , either in the  Philippines, or another country of your choice. Find the best that you can. I think that this will bring some peace to you. I beleive that a medical oncologist is appropriate.

You mentioned your concerns about going to the gym, something that you vastly enjoy. Many men go to a gym, workout and go home to shower, so can you if you wish. I also attend gyms on a regular basis; one such gym has a closed shower door, where you can shower and change. ..It's not me, but to be honest, there are men with all kinds of physical disabilites who I see where I attend....Frankly, in my opinion, I personally do not care what they look like, and anyone who is your friend would not care.....but, I do care if they are nice or not.

If the side effects of your treatment really bother you, you might consider seeking a friend or professional to speak with.

By the way, I've incorporated the physical training method that you mentioned into my workout....the first time that I did it I experienced a lot of pain in my muscles, now I take it easier....thanks.

 

 

hopeful and opt...
Posts: 1291
Joined: Apr 2009

I feel for you.

I do not have sufficient medical knowledge to comment about your situation, only some non biased common sense based on what you wrote.

Since you are unsatisfied with the medical attention that you are receiving, I strongly recommend that you seek medical attention elsewhere , either in the  Philippines, or another country of your choice. Find the best that you can. I think that this will bring some peace to you. I beleive that a medical oncologist is appropriate.

You mentioned your concerns about going to the gym, something that you vastly enjoy. Many men go to a gym, workout and go home to shower, so can you if you wish. I also attend gyms on a regular basis; one such gym has a closed shower door, where you can shower and change. ..It's not me, but to be honest, there are men with all kinds of physical disabilites who I see where I attend....Frankly, in my opinion, I personally do not care what they look like, and anyone who is your friend would not care.....but, I do care if they are nice or not.

If the side effects of your treatment really bother you, you might consider seeking a friend or professional to speak with.

By the way, I've incorporated the physical training method that you mentioned into my workout....the first time that I did it I experienced a lot of pain in my muscles, now I take it easier....thanks.

 

 

VascodaGama's picture
VascodaGama
Posts: 1526
Joined: Nov 2010

Rak

You may be experiencing hypogonadism. The symptoms you describe are not typical from Zometa's side effects.

This drug is a bisphosphonate recommended in the treatment of bone metastases. It helps in protecting the bone from deterioration (osteoporosis) due to the lack of testosterone. In some cases it is reported that it manages to reverse the condition of osteopenia.
I read that the side effects are more accented in IV administration. You could try getting it in oral pills or even change to a different drug like Prolia or Fosamax or still better, changing to Xgeva (
denosumab
) which does both; helps the bone and attacks the cancer.
http://news.cancerconnect.com/xgeva-delays-bone-metastases-from-prostate-cancer/

Another drug just approved in USA is Alpharadin (Xofigo) which is the newer wonder drug to tackle PCa in bone. It kills it.
Read this;
http://advancedprostatecancer.net/?cat=818

You can discuss with your doctors about any possibility in taking this drug or even in participating in clinical trials using the drug. I would recommend you to visit St. Lucks’ in Manila where the doctors are more in “touch” with the USA medical system. Oncologists that may help you is Dr. Tangco at the Medical City in Manila (call him) or Dr. Alex Chang in JH-Singapore.

Best wishes for a return to quality living.

VG

 

caseyh
Posts: 63
Joined: May 2002

The Zometa side effects described by Swami Rakendra above are not typical, but could very well be a result of Zometa infusions.  I received Zometa infusions for almost two years and never had any of the symtoms he describes, but I do know of people who had similar reactions.  I found early on that the nurses at the infusion center tended to administer the drug erratically.  An I.V. salene solution flush should be administered before and after the Zometa infusion.  The Zometa infusion should be administered over a period of 30-40 mins. (I don't remember the exact # of mins., but the longer the better).  You need to check the rate of drip yourself and roughly calculate the timing yourself.   I had more than my share of arguements with nurses over this.  After the treatment. I would also drink 64 ounces of water as quickly as possible on my drive home. The purpose of all of this is to flush the kidneys and prevent the accumultion of Zometa in the liver.  That should eliminate most, if not all, of the side effects.

VG, your posts continue to impress me.  Your insight and advice is of inestimable worth for all of us.

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Swami,

I'm saddened to read of your present difficulties.  Hindsight is usually 20/20 but I know you did what you thought best at the time.  Since you can't reverse the situation I know you know you have to make the best of it but your situation is a learning point for others.  Sometimes doing nothing and preserving quality of life is a sound choice.  Everyone has to think about their priorities and act accordingly.  In any event, none of us are getting out of here alive.

I don't know what to think of this "testicular cancer" your doctors are diagnosing.  From what you describe, it just sounds like they're not getting the whole story.  I know you've written about second opinions before in your location in the Phillipines but maybe you should try it one more time.

The removal of your testes will lower your PSA but removing the testosterone that is necessary to feed cancer.  The side effects you are experiencing are the price you pay for that option.  

I hope your condition improves soon!

 

K

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

   

Rakendra's picture
Rakendra
Posts: 74
Joined: Apr 2013

I am understanding that the level of treatment here is very, very bad.  The Zometa was given in less that 15 minutes.  There was no other preparation, and no one suggested to drink lots of water.  I just seem to hit one erratic and poorly handled treatement after the other.  The "testicle" went down immediately after the Zometa to about 45%.  I have had some tests that are normal.  I am still not well, but, at times feel pretty good, and hope to go to the gym tomorrow.  Being as I have had NO side effects from the cancer, but lots from the treatments, I tend to perhaps misjudge the cancer danger.  I see on the board from other posts that those who have advanced bone matastasses as I definitely have, do not have a very optimistic view of future life. Most seem to feel that there is not a whole lot of time left at this stage, like maybe 6 months to one year.  My view is that no one can really tell.  Is that correct?  After all, I think I have had this thing for at least 15 years with no treatment, and my hope is I can get at least another 2 to 5 years.  

      Of course, at 81, this is not that much of a tragedy at all.  Are there other meds that I might or should be taking?  The Drs. here think that because I am (was) in such great shape and because I have had it for so long, that there is no iminent danger, and they are due for a correct decision!!!!   I have many friends who went thru treatments for various old age similar ailments  and almost all say they would not opt for treatment again.  It is easy to wonder if I had never known about it if I would not have been better off.  It certainly was not hurting me in any way.  

     I think families of cancer sufferers may not understand fully the devastating mental and physical problems that cancer people have.  I think it may change the personality, certainly the physical being, and have a negative effect on the spiritual being as well.  I do think everyone is a changed person.  Pca is a permanently damaging process in many ways.  All of you guys who post are so important to all of us. I am sure that there are many lurkers here who for one reason of the other do not share.  I read ALL posts and am always helped.  Thank you. love, swami rakendra

yankeefan
Posts: 69
Joined: Mar 2013

hope your trip to the gym goes well...and that that makes you feel even better......

jogger
Posts: 47
Joined: Nov 2009

Hello Swami,

You wrote: " Castration removes all testosterone from your system"

 

Well, almost all of it.  There is some residual T in the body and some is still produced by the adrenal glands.  I'm not  saying that this has any bearing in your case.

 

  Your  medical situation and life experiences are interesting and I wish you good luck

 

Jack from Jersey

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