Side effects - do we always know as much as we need to?

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English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 6/15/2011 5:52 AM (GMT -6)   
Side Effects...do we always know as much as we need to?

We all talk about, suffer from, or worry about side effects, both before during and after assorted treatments: surgery, seeds, RT, HT and medications (even AS has side effects).
Some people may simply feel that everything causes side effects so there is not a lot to worry about when making decisions, but the important thing is to know something about the magnitude and duration of any side effects, and about the number of patients that suffer from them.

To help understand the nature of the side effect fully, and thus if it is likely to be bearable, then what you need to hear from a doc is something about:
-The severity of the side effect in terms of something like the Richter scale from 1 to 10; (For example: with ED there are a whole range of levels of dysfunction between a penis that works just like it used to and one that doesn’t work at all)
- The duration of the side effect: 1day, 30 days, 180 days, 360 days, permanent. (Feeling nauseous for 24 hours may be bearable, but feeling woozy for six months will not be)

As for what percentage of patients will actually suffer from it, them clearly there is a big difference between 0.1%, 1%, 10%, or 99% having a problem. (Occasionally I have had packets of meds where the side effects are listed in terms of how many people per 1000 may get them, but this does not yet seem to be the norm.)

So why not ask docs for this level of detail about any side effect mentioned in relation to a specific treatment, operation, medication etc. rather than assume that the risk is either bigger or smaller than it may actually be.

Alf.
(Edited typo)
Age dx 48
Apr 09 PSA 8.6
DRE neg
Biop 2/12 pos
Gleason 3+3
Jul 09 DaVinci AVL-NKI Amsterdam
6 Aug 09 Cath out
PostOp Gleason 3+4 Bladder neck & Left SVI -T3b
No perin’l No vasc invasion Clear margins
Dry at night
21 Sep 09 No pads daytime
Nov 09 PSA 0.1
Mar 10 PSA 0.4 sent to RT
13 Apr CT
RT 66Gy ends 11 Jun 10
Tired + weird BMs
Sep 10 PSA <0.1
Jan 11 PSA <0.1
Apr 11 PSA <0.1
Erection OK

Post Edited (English Alf) : 6/15/2011 10:11:34 AM (GMT-6)


Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 6/15/2011 6:11 AM (GMT -6)   
I thought everyone talked to their doctor abour SE's??? And I thought everyone got the generic answer of: "Only time will tell" what if any SE you'll get and how bad or mild they'll be....
 
When ever I get home from going to the Pharm with a new script - I read the heck out of the litature that comes with the meds. I then know in advance what to keep an eye for and what to do incase I hit the high end of the affects.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 6/15/2011 6:55 AM (GMT -6)   
Doctor John Mulhall has a video out about surgery, ED issues, recoveries and explains how generally many of the docs dropped the ball on total disclosures of what surgery patients should know up front. He pointed out that somehow about 40% of patients didn't realize that after surgery ejaculate is not going to happen, and alot of misnomers on restoring one back to somewhat normalcy from ED...those muscles, endothelial cells in the penis need to be helped otherwise atrophy can set in, so earlier ED drugs or injections are shown to be beneficial. You would have to read his stuff, he has published articles too, it seems he is one of the guru's on studying ED and sexual issues and some answers on such in patients from surgery and radiation, etc. He also explains perionnes issues that happen from surgery in some patients, nerve sparing and issues, etc. Maybe someone else has ready to go links from this guru. He also mentioned that in some patients (usually the older, not in the youngest group), that recovery from E.D. in some men may be 18 months out or 2 years. So, there is hope for some of the people whom thought it was gone and inactive.

As for side effects alot of it gets glanced over, how many docs wish to tell the patient that your LHRH drug like Lupron is causing bone density loss and long term could lead to bone fractures (a minor issue?), memory loss is another, instead focus is on weight gain, fatigue and sugar coating or down playing some of the side effects. Same with other drugs usually, not total disclosures, plus it would take 1/2 hour to perhaps discuss such with a patient or alot longer...time is money. This does vary depending upon whom your doc is, some will go to the mat in clear disclosures. I got 8 opinions and got a taste of what is said to patients, it varies alot more than you might believe.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 6/15/2011 7:51 AM (GMT -6)   
Alf, I fully agree with your post. Knowing potential side effect is a very important matter to me.

Before I take any meds, have any procedure done, etc, I always ask the questions: Are there any known side effects? Are there any serious ones I need to know about? This has been my practice for many years.

In my recent thread, I simply posted a long listing of known side effects from HT. I was surprised at how many possibilities that showed up on that list. From following the posts from HT guys here at HW, I mostly only read about loss of sex drive, fatigue, breast tendernes, weight gain, and a few others. I had no idea that there were so many others, that if a person was on the receiving end, could either cause problems and/or effect one's quallity of life.

Once again, its the patients responsibility to ask these questions upfront, in case they are dealing with a doctor that doesn't talk much. I am fortunate that all 3 doctors in my team are talkers and listeners, so I always have the opportunity to ask such questions.

Thanks for starting the thread, its a very important subject with me.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81, 6/11 5.8
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 6/15/2011 7:56 AM (GMT -6)   
zufus, here's a couple links for your Bookmarks folder

www.youtube.com/watch?v=ie8NkOu2VNA&feature=related

same thing from the Sloan Kettering site, but broken up into sections

www.mskcc.org/mskcc/html/95102.cfm
James C, 64, East TN
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% inv, lf. lobe, GS6
9/07: Nerve Spar. open RP, Path: pT2c, 110 gms., clear except:
Prob. microscopic inv.-left apical margin -GS6
3 Years: PSA's .04 each test until 4/10-.06, 9/10-.09, 12/10-.09, 2/11-.08, 5/11-.08
Bimix .30

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 6/15/2011 10:34 AM (GMT -6)   
Thanks James he is the man on that subject matter, good videos, the one I saw at our meeting seminar thing, had Mark Moyad in the background and he asked a couple of questions to Dr. Mulhall in his smart blank fashion humor...it was pretty funny with his interjections.
 
Is this linked into H.W. hot topics like English Alf's article (joint article perhaps) on what to expect with surgery?  Should be a must see for especially for new surgery patients.

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 6/15/2011 11:10 AM (GMT -6)   
Yes, it has been there since June, 2010, as a seperate thread, inside the main Sticky
James C, 64, East TN
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% inv, lf. lobe, GS6
9/07: Nerve Spar. open RP, Path: pT2c, 110 gms., clear except:
Prob. microscopic inv.-left apical margin -GS6
3 Years: PSA's .04 each test until 4/10-.06, 9/10-.09, 12/10-.09, 2/11-.08, 5/11-.08
Bimix .30

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2218
   Posted 6/15/2011 11:24 AM (GMT -6)   
I was right about the Dutch way: my wife has just been put on antibiotics due to an ear infection and the meds come with the type of list I mentioned. "The following side effects occurred for 1 in 10 who have taken this medication"there then followed a list, plus lists for things that had affected 1 in 100, 1 in 1000 and 1 in 10,000, and the things that were very rare.)

Glad to have stimulated replies, links etc from knowledgable guys about making sure you ask the right questions at the right time and get a full reply, not just an over-simplified one. Also shocking once more to be reminded about how there are folk out there who have misunderstood what "side effects" can truly mean. (I'm not sure I knew enough about dry orgasms before I was told! Mind you that is perhaps one of the few side-effects with a bit of a plus side to it too.)

I am feeling a bit worn out as I am now in the middle of packing boxes to move house. (We're on the fourth & fifth with no lift too! We're going to use a company for the big stuff, but want to pack and move some precious things ourselves first. Crazy!)

Alf
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