HT and osteoporosis

One of the side effects of HT is osteoporosis. How long after beginning HT should one wait before having a bone density test? My radiation oncologist has indicated that he plans to have a bone density test done in August at the time of my next scheduled visit, at which point I will have been on HT for about a year. But I already have some muscular skeletal aches and pains that suggest I may have the symptoms of osteoporosis, even though I have been taking a high daily dosage of both calcium and vitamin D . Is it reasonable for me to request that the bone density test be given earlier than scheduled?

Sancarlos

Exactly as John mentioned a good onco-doc can get you a markers of bone breakdown lab tests like: Pyrilinks-D (Dpd) or Metra (Dpd). Which can indicate effects of PCa on a patient. Radiologically a bone mineral density with quantitative CT scanning (QCT) is used which may show things. Others things can be done for bone density tests, too. When detriorated enough it is dibilitating for a patient.

Bisphosphonate compounds used for bone issues: Fosamax, Actonel, Aredia (IV)*, and of course Zometa (IV)*. Zometa is considered probably the most powerful and is alot more potent than Fosamax, of course cost is hugely different as is delivery into the patients system.  Zometa & Aredia is an IV situation *= you could have Acute Phase Response seen within 24-36 hours after the first IV done, could be:  fever, chills, bone and muscle aches, malaise and occassional kidney injury (wow is that mentioned to patients hopefully).

Almost like it is a (LOL) a communist plot, many patients could instead have taken DES, estradiol patches or emcyt and if you read about them very carefully, they help or atleast maintain bone issue intergrity and memory...where as the profittable LHRH drugs (Lupron, Zoladex et al) they rob the patient of bone density and memory loss and muscle mass, etc. Almost like they want you to become their zombie and hooked on their drug protocol and maybe for life. Have you noticed the poster 'child' patient of PCa in the docs offices...call it truth in advertising they are showing a puggy older guy of whom if you didn't look like that when you came in (I didn't)...you soon will be(started to look like that on ADT3)...so accept the plurality of your poster looking like that one and I think that is why they don't show a poster of Charles Atlas or Hulk Hogan (LOL).

But how nasty of me to mention such, this is why you should question everything and all the time. I am not saying the above drugs are your only choices, there are many others not widely known and even some onco-docs might not know them well enough to prescribe them. I just wish more patients knew all their possible choices and had more of a say in what they would like done unto them as treatments, and heaven forbid maybe in their best intrest$. The options you have (perhaps) is hire and fire till you get the type of doc you wanted and not the 'Soup ****' type like on Seinfeld's tv show. Even doctor Strum says do not be afraid to 'drop the doc' if he is not working with you to satisfy your wishes, desires or work with you. In the words of Johnny Cockeran if the doc don't fit, maybe you should quit. (well paraphrased, we seen the glove in the DRE's segment and hey, it got personal after that). Laugh-laugh!

(www.pcri.org ) 

I received HT, Lupron then Trelstar, for two years in conjunction with EBRT. I had no baseline Dexascan to go by but one done 9 months after starting HT showed significant loss of density. My urologist started me on oral Fosamax at that time.

But a few months later I fractured a vertabra which required a spinal fusion. Because of the rapid loss of bone density I reluctantly agreed to IV Reclast which is more potent than Fosamax but also has a higher risk of osteonecrosis. It seems that every treatment in this journey involves trade-offs of risks-benefits.

Each of us must make our own decisions about treatment options but, from my experience, I would recommend aggressively pursuing your questions about osteoporosis and beginning some form of treatment .

zufus,

all kidding aside, have you considered putting together a non-fiction book, or at least a guide, based on your research of "alternatives" in treatments that you have worked so hard to discover and share. If what you have learned, especially from a non-doctor perspective, were put into some kind of systematic or logical order, I think it would be a big help to anyone with advanced and difficult cases, for those that don't have unlimited financial resources or insurance, and without the normal expected biases coming from the conventional medical community.

if you don't consider yourself a writer, or don't have the time to do the "doing it" part, I would even be willing to ghost write for you. You could be doing a great service to the PC community at the patient level. at least think about please, I am being quite serious.

David in SC

Purgatory,

I agree that going done the HT path should be a considered and informed decision. But, as you alluded to, for some of us with advanced aggressive Pca there are not a lot of viable options. I chose what I, my urologist and radiation oncologist felt gave me the best chance for a long term remission and possibly cure. I also consulted with the specialists at The James Cancer Center at Ohio State University who concurred with the treatment plan.

I now am at 27 months post EBRT/HT and thankfully am still a member of the 0 Club. Other than the osteoporosis and commonly shared ED (which is gradually responding to meds) I am living a full and enjoyable life. I use common sense but now sky dive, zip line, play paintball, swim and whatever else I feel like. My 72 years are far more limiting than the side effects of the treatment.

I have followed your journey with admiration for your courage and wonder at your strength in enduring your many setbacks. My problems pale in comparison to what you and others I have known through the years have had to deal with.

As a G9 also, I am always waiting for the other shoe to drop, and be heading down the SRT path, and most likely HT if that is not successful.

If my PSA is rising, and I want to see my family for a few more years, and see my grand kids grow up, really, what choice do I have ? Surgery had its risks, radiation has its risks, and HT has its risks.

I will do whatever I have to do to keep on going if my quality of life can be maintained. If loss of bone density means a decent quality of life for a few more months or years, I would be a fool to hesitate. If its memory loss, I may not remember any way.

I appreciate you guys and your honesty. I am also glad to hear of your successes. It continues to give me hope. Thanks for sharing your story, and good luck on your journey.

Zufus,

The section on hormone therapy in Dr. Strum's book is especially interesting. In fact, it was something I read in A Primer on Prostate Cancer that lead me to ask the question that began this thread.

I certainly understand the inconsistencies, exceptions, variations, biases, and agendas involved in trying to make sense of the protocol of treatment of prostate cancer. And PC is also a very big business, whether the money goes to the traditional field or to those pushing new protocols.

Sancarlos

zufus said...
SanCarlos- appreciate your sincere reply just want to warn you that this realm of PCa is as Robert Young coined " A Jungle" it does not have rules, not definitive, not easily deciphered from any angle including academics. Alot of smart guys have done alot of analyzing in the past and some things are made better known, but it is full of inconsistencies, exceptions, variations, biases, even agendas. If the docs were totally honest to the patients they would mention the overall lack of perfect assessments and mention that there is alot of 'gamble' in about any protocol. You would love what Dr. Strum has to say about PCa, read his book 'A Primer on Prostate Cancer-The Empowered Patients Guide' then you will be empowered when talking with your doc and know if smoke is being blown your way.

p.s. to navyman:

i didnt realize your age before, you are doing great with your treatments. and do you really skydive at your age, i took that literally, lol. are you retired navy, or just did a stint like i did when young. i am the son of a lifer, and did one tour during viet-nam myself mostly with VP-17.

David in SC