Side Effects and their Impacts

[DavidAbrahams]

Side Effects and their Impacts

Side effects are mentioned in the first posting of "My Journey To Date" and in my March update I mentioned that there would be a separate post/ article on "my" side -effects and their impact.

Table 1 lists my sixteen (1 - 16) side effects and Table 2  lists eighteen (a - r) principle impacts with the corresponding number from table 1.

As you are aware androgen deprivation therapy (ADT) is presently the most successful and common  method for treating men with Advanced Prostate Cancer or Metastatic Prostate Cancer, however the downside can be the side effects. 

Do the side-effects vary if one is on ADT full time or intermittently?          I do not know the answer except to say that my ADT is intermittently.

Do the side effects vary on your type of ADT?                                          Again I do not know the answer except to say that I'm on Zoladex and Cosudex, but had a 3 month spell with Zoladex and Androcur and the side effects were considerably much worse. Perhaps a Forum member knows a a bright young Urologist who would like to do a PhD on side effects and Hormone Therapy!! 

We all respond differently to ADT and accordingly have different and variable side-effects and corresponding impacts. As an example I will use hot flushes. I consider my hot flushes to be mild and certainly no more than a 12 a day max and lasting only a few minutes. Other blokes hot-flushes are defiantly severe when you hear them say that they have change the sheets, have a cool shower or stand in front of a fan to cool down.

Did your Urologists explain in detail possible side effects and their impact on you, your spouse and family.  Maybe yes, maybe no. Mine could have definitely done a better job, especially as he gave us 3 days to make a decision. Surgical Castration or Medical Castration! He recommended the later. *(Continued after the 2nd table)

Table One - Side Effects

1: Fatigue, Extreme Tiredness;

2: Muscle degradation;

3: Cognitive Issues;

4: Cold Spasms/ tremors; av1/ month

5: Hot Flushes; average 6 - 10/ day

6: Loss of Libido;

7: Erectile Dysfunction;

8: Psoriatic Arthritis (hands);

9: Osteoarthritis (Lower Spine, Knees & Hips);

10: Osteoporosis;

11: Nausea (minor);

12: Weight Loss;

13: Hoarse Voice;

14: Penile and testes reduction;

15: Depression/ Anxiety; (mild) and

16: Anaemia (mild)

 

Table 2 - Impact

a: Unable to Work/ Loss of Income; 1, 2, 3, 14 = reduction in overall lifestyle.

b: Unable to walk one of my dogs; 2, 9

c: takes about 2 - 3hrs to hoover & mob the floors; 1, 2

d: Some days have to sit down after a 30' walk; 1, 2

e: Unable to go swimming / surfing; 1, 2

f: Unable to do heavy gardening tasks, split logs, mow the grass; 2

g: Hill walking; 1, 2

h: Drive long distance; 1, 3

i: Clean the car; 1, 2

j: Hold extended conversations; 3, 14

k: Stand for periods of time; 1,2, 10

l: Concentrate for short periods, let alone longer periods; 1, 3

m: Unable to Open a twist top, bottle of wine; 2

n: Hands lock together, shaking hands, clenching fist; 8

o: Sleep interruption, self & wife; 4, 5

p: Personal Relationship; 3, 6, 7,14, 15

q: Mood swings, irritable, confidence; 3,15

r: Increased frequency during day; 16

nos.1-3 are by far the worst. They impact on everything!

Other side effects from ADT are the increased risk of Coronary disease and diabetes. Also weight gain rather than loss as in my case. Severe perspiration; dizzy spells; unable to drive. 

*Undoubtedly we were pressurised to make a decision. Did we make the right one.** I'm not sure except that I pose another question. Had I taken the surgical castration option would I have had all the afore mentioned side effects?

Please note that I have found that some Specialists are genuinely interested in side effects others are not. They all should be as they are working for you.             I have changed specialists because of their complete lack of interest on the impact of the medication that they are prescribing to me their patient. As far as I am concerned this means that they are more interested in the money rather than the patient.

** On hindsight I should have had Surgical Castration. Why less social and financial impact on myself and family.

DHA 2nd. May 2014

 

March 2014 update:

http://forums.jimjimjimjim.com/index.php?/topic/857-david-h-abrahams-march-2014-update/

OR

http://tinyurl.com/oek3la6

 

[JimJimJimJim]

David

You certainly have copped a lot with your treatment.

 

I am not sure that having had surgical castration (orchiectomy) instead would have had much difference.

 

The literature (two articles below) seems to suggest there is no difference in quality of life between the two treatments. Perhaps this is because the greatest effect comes from the lack of testosterone, rather than any other affect of the chemicals used.

 

Aktuelle Urol. 2008 Nov;39(6):448-55. doi: 10.1055/s-2008-1038282. Epub 2008 Oct 31.

[The German HTA report: orchiectomy versus LH-RH analogues in the treatment of advanced prostate carcinoma: are there any consequences for the daily health service?].

[Article in German]

Rohde V1, Grabein K, Weidner W, Wasem J, Hessel F.

Author information

 

Abstract

PURPOSE:

This systematic review evaluates international data on the medical effectiveness of orchiectomy and medical therapy with LH-RH analogues in patients with advanced prostate cancer. These results are discussed in the context of primary, neoadjuvant, adjuvant and intermittent hormone deprivation.

MATERIALS AND METHODS:

A systematic, diversified literature analysis in the common medical and HTA databases and further media was conducted.

RESULTS:

All identified, randomised and controlled studies concerning the application of LH-RH analogues showed the same medical effectiveness for orchiectomy and for treatment with LH-RH analogues. Four different studies regarding the quality of life revealed no significant difference between the treatment with LH-RH analogues and the therapy with orchiectomy.

CONCLUSION:

According to available studies, there is clear evidence for the equivalent effectiveness of LH-RH analogues and orchiectomy in the treatment of advanced prostate cancer. A change back to orchiectomy - even though it is more cost-efficient - cannot be recommended when taking the extended indications for temporary hormone deprivation into consideration.

PMID: 18979400

 

GMS Health Technol Assess. 2006 May 26;2:Doc13.

Orchiectomy versus medical therapy with LH-RH analogues for the treatment of advanced prostatic carcinoma.

Rohde V1, Grabein K, Hessel F, Siebert U, Wasem J.

Author information

 

Abstract

BACKGROUND:

In Germany prostatic cancer is the most frequent cancer in men. The therapy of advanced prostatic cancer has changed significantly from the sub capsulate and / or total orchiectomy to the medical LH-RH analogues therapy during the last ten years, which has considerable effects on results and on costs. Both treatment procedures are based on a slowing down regulation of the growth of the hormone sensitive, neoplastic prostatic cells by the withdrawal of testosterone, which is clinically accompanied by a slowed tumor progression.

OBJECTIVES:

This health technology assessment depicts and evaluates international data of medical effectiveness and efficiency of orchiectomy and medical therapy with LH-RH-analogues in patients with advanced prostate cancer.

METHODS:

A systematic, diversified literature analysis in the common medical, economic and HTA data bases and further media was conducted.

RESULTS:

Five identified, randomized and controlled studies concerning the application of LH-RH analogues showed the same medical effectiveness of orchiectomy and treatment with LH-RH analogues. Four different studies regarding the quality of life revealed no significant difference between the treatment with LH-RH analogues and the therapy with orchiectomy. Dealing with health economic aspects seven cost-minimizing studies and one cost effectiveness study could be identified. All cost-minimizing studies show methodological restrictions. In general all studies draw the conclusion that the treatment of advanced prostatic cancer with orchiectomy is the most cost effective method, if one assumes a remaining life expectancy of more than one year.

CONCLUSIONS:

According to available studies, there is clear evidence for the equivalent effectiveness of LH-RH analogues and orchiectomy. Until now the studies - due to immense methodological restrictions - could not supply sufficient scientific evidence concerning the aspects of quality of life. In cases of a remaining life expectancy of more than one year, the orchiectomy is the more cost-effective alternative of therapy.

PMID: 21289964

 

These extracts can be found on http://PubMed.com, and is in the public domain.

On PubMed.com there will be a link to the full paper (often $30, sometimes free).

 

Any highlighting (except the title) is not by the author, but by Jim Marshall.

Jim is not a doctor.

[Paul Edwards]

Thank you for such an excellent post, David.

 

Whilst my symptoms are not severe as yours, I agree with you that fatigue, extreme tiredness, muscle degradation and cognitive issues are the worst side effects for me.  As for loss of libido and erectile function, I tell my friends that I'm on the same medication that they give sex offenders.

 

My wife says that I'm grumpy. Whilst I sometimes feel down, a psychologist says that I'm not depressed.

 

I laughed at your suggestion at getting a bright young Urologist to do a PhD on side effects and Hormone Therapy. The problem is that the specialists know all about the side effects but have little advice about treatment or minimisation of those effects.

 

There's lots of evidence that exercise helps to minimise some of the side effects.  What brilliant advice - it's very difficult to exercise when suffering from fatigue.