ZOLADEX TO XTANDI

[timbaker]

HI ALL, 

After suffering pretty crippling depression on Zoladex,  I've  managed to enjoy a couple of extended breaks from it on Cosudex alone over the past couple of years. With my PSA now rising sharply my oncologist has suggested it is time to move on to Xtandi. I have been told many men tolerate Xtandi better than Zoladex but the list of potential side effects has made me pretty nervous, particularly the risk of seizures. I wonder what others have experienced in making the transition from Zoladex to Xtandi. I know it varies greatly between individuals but would be interested to know how others have fared. 

 

On another note, I'm also curious what other men with this condition do about travel insurance when they travel. We had a family trip to the Maldives last year which was great but I discovered I was unable to get travel insurance with my condition. Are there any insurers that will cover you, even if only for matters not related to the cancer diagnosis? I'm a surfer and still enjoying reasonably good health and keen to make the most of it but traveling without travel insurance is pretty risky and could get wildly expensive if anything went wrong. 

Thanks, 

Tim

 

[Roscoaus2000]

Hi Timbaker,

I was diagnosed with advanced metastatic prostate cancer with CT scans and psa of 9000. I was started on daily Cosudex daily and Zoladex injection 3 monthly. My psa dropped to less than 1 after 3 months. After 12 months psa started rising again and I was changed to Xtandi 2 tablets daily. Psa dropped to <0.01 but after 4 months I suffered a mild seizure. Medication was then changed to Zytiga plus prednisolone. That was 12 months ago and psa is still 0.01. Zoladex has been injected every 3 months and for 15 months I have had monthly demos Amon injection. While on  Cosudex I had some hot flashes and muscle aches. After change to Xtandi and subsequently I have been free of both those problems. I power walk and play golf to maintain fitness.

With regard to travel insurance I have regularly cruised world wide and I obtain insurance from Vero with an exclusion for my pCa.

[alanbarlee]

G'day Tim,

 

We're all different in how we react to the various drugs that we need to defend ourselves against prostate cancer - sounds like you drew the short straw with Zoladex, which I've been on (with other drugs) for the past 14 years. Rosco's most recent regime and response (similar to mine) shows how spectacular these drugs can be in controlling potentially serious PCa.

 

You might want to raise with your medonc an alternative to Zoladex - perhaps degaralix, a GHRH antagonist (different mechanism of action to GHRH agonists like Zoladex). This is injected monthly, rather than 3-monthly, and can cause some mild abdominal soreness around the injection site for a couple of days - but only a trial period will show whether there's a net benefit. Otherwise, maybe Lucrin (closer  to Zoladex) might be worth trying. Hot flashes and some fatigue are often part of the scene with androgen deprivation, but you soon learn how to manage these side effects.

 

The reason for pursuing this this category of drug is that it is usually required in conjunction with Xtandi (a much more effective drug than Cosudex, but occasionally associated with seizures, as was the case with Rosco), or Zytiga (equally effective, but a testosterone synthesis inhibitor rather than a testosterone blocker). In Australia, PBS access to both these drugs usually requires previous (or failed or not tolerated) Taxotere, a chemotherapy that's often quite well tolerated, especially with younger and fitter men like yourself.

 

Some data on your current PSA, PSA DT (doubling time), Gleason score / Grade Group following biopsy or RP (if available) and scan results would provide us with a better basis for sharing experiences that are relevant to your circumstances.

 

On travel insurance, there's no substitute to looking around (with help from Google). We're travelling to Pategonia and the Antarctic next January at age 79 and 78, and found we could get all the key coverages we wanted at reasonable cost without having to declare specific medical conditions - which, with specified exceptions, our provider doesn't cover. Take a look at FastCover if this option is of interest to you.   

 

Keep us posted - and good luck!

 

Alan

     

[timbaker]

Thanks Alan and Rosco,

I was diagnosed in July 2015 with PSA 120 and Gleason score 9, with mets in the right femur and left seventh rib. I had chemo (docetaxal) along with Zoladex from the outset and tolerated the chemo reasonably well. The Zoladex only really became an issue after about 18 months. The lesion in the right femur cleared up about two years ago and hasn't come back, and I have had some targeted radiation on the rib, which is showing signs of decreased activity. My hope was that zapping the rib might drop my PSA and allow more time off Zoladex but that hasn't been the case. 

I had a six month break from Zoladex in 2017 because of the side effects and did quite well on Cosudex alone for the first months before PSA started rising again, and it was a similar patter when I had a break late last year. Now it is rising quite rapidly - from 5 to 12 to 16 to 23 over the space of about three months, so a very short doubling time, My oncologist suggested going back on Zoladex which I was dead against, as it put me in such a dark place last time.  He didn't mention any of the other options you've touched on Alan but I might bring them up with him. Thanks for the tips on travel insurance. I figure I've just got to give the Xtandi a go at this point and see how I fare. 

cheers, 

Tim

[ardee]

If you are considering Xtandi monotherapy, discussing newly approved in Oz, Erleada (apalutamide) with your med onc may be appropriate.

 

We are aware of a couple of situations here in the US where monotherapy apalutamide is showing success. It has been used by a highly reputable GU med onc at Mount Sinai, NY, Dr. William Oh. Listen to this Sept 2018 recording of one man speaking about his experience ... https://ancan.org/monotherapy-apalutamide-erleada-a-discussion-with-al-pfadt/

[Charles (Chuck) Maack]

Hello timbaker,

 

You didn’t mention the dose of Zoladex that was prescribed.  It may be that if the 3-month supposed effective dose of 10.8mg was administered it caused you the issue for which you remark.  If this is the case, perhaps getting the one month (actually every 28 days) dose of 3.6mg will not cause you the same issue, and would certainly provide better ADT than merely Casodex/bicalutamide or Xtandi/enzalutamide alone. If this monthly dose is tolerated, then after three or four months you could then try the 3-month dose and possibly not have the same issue since your body will have learned to tolerate the medication.

 

If your cancer is still hormone sensitive, the Xtandi may serve a greater purpose than Casodex, since Xtandi is considered somewhat a “super” androgen receptor blocker.  Xtandi is not a replacement for Zoladex.  As I note, Xtandi is an antiandrogen designed to better inhibit androgen (aka testosterone) from accessing the multitude of androgen receptors on cancer cells. Zoladex is an inhibitor of androgen/testosterone testicular production.

 

Might I suggest that you have your Prolactin level determined (reasoning  https://tinyurl.com/7w5omeo).  Next determine if your testosterone (T) level and your dihydrotestosterone (DHT) level are elevated.  If so, then the addition of the 5Alpha Reductase (5AR) inhibitor dutasteride/Avodart could be considered to add to your current ADT to prevent testosterone (T) conversion to DHT (the up to five times or more powerful stimulant to prostate cancer cell growth and proliferation than T) when T comes in contact with 5AR.   

 

BUT PLEASE ALSO NOTE: Medications involved in Androgen Deprivation Therapy (ADT) are known to increase cardiovascular risk.  Thus, IT IS IMPORTANT that prior to prescribing any form of ADT medication the patient’s other health issues, that would include already present cardiovascular issues, are determined.  As noted in:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4516188/ 

 

“Androgen deprivation therapy (ADT) has been the mainstay of treatment for advanced prostate cancer for decades and has been shown to control disease and improve symptoms. In addition, for men with high-risk localized or locally advanced prostate cancer, short-course ADT in combination with radiotherapy improves survival. There is evidence that ADT increases cardiovascular risk, particularly in men with preexisting cardiovascular disease. This increased risk may apply even with short-course ADT. In an individual patient, the benefits of ADT should be balanced against the risk, and patients who require ADT should have risk factors for cardiovascular disease optimized. There is some evidence to suggest that more contemporary methods of delivering ADT may reduce cardiovascular risk.”

 

Dr. Matthew Roe, a Professor of Medicine at Duke University’s Clinical Research Institute (DCRI), the Faculty Director of the Global Outcomes Commercial MegaTrials program, and the Director of their Fellowship Program, remarks: “If a patient who has advanced prostate cancer and known cardiovascular disease is being considered for androgen deprivation therapy, it is important that he speak with his cardiologist. (Presumably, both a cardiologist or cardiovascular specialist and a urologist or oncologist would treat him.) He needs to ensure that all the providers have a discussion about what the best and safest treatment would be before therapy begins. Obviously, this trial (the PRONOUNCE trial regarding which is safer for patients with cardiovascular issues, the GnRH agonist Lupron or antagonist Firmagon (or neither?) https://tinyurl.com/yxnw5kb6 ) is not completed yet so we don’t have any answers. In the meantime, it is certainly in the patient’s best interest to ensure that his providers are communicating and trying to jointly determine the right approach.”

 

Unfortunately, we prostate cancer patients have to determine with our treating physicians when the benefit of drugs to serve controlling our cancer outweigh the side effects we may have to learn to endure.

 

DISCLAIMER: Please recognize that I am not a Medical Doctor.  Rather, I do consider myself a medical detective. I have been an avid student researching and studying prostate cancer as a survivor and continuing patient since 1992. I have dedicated my retirement years to continued deep research and study in order to serve as an advocate for prostate cancer awareness, and, from an activist patient’s viewpoint, as a mentor to voluntarily help patients, caregivers, and others interested develop an understanding of this insidious men’s disease, its treatment options, and the treatment of the side effects that often accompany treatment.  There is absolutely no charge for my mentoring – I provide this free service as one who has been there and hoping to make their journey one with better understanding and knowledge than was available to me when I was diagnosed so many years ago.  IMPORTANTLY, readers of medical information I may provide are provided this “disclaimer” to make certain they understand that the comments or recommendations I make are not intended to be the procedure to blindly follow; rather, they are to be reviewed as MY OPINION, then used for further personal research, study, and subsequent discussion with the medical professional/physician providing their prostate cancer care.

 

Charles (Chuck) Maack (ECaP) - Continuing Prostate Cancer Patient Since 1992, Advocate, Activist, Volunteer Mentor since 1996 to men diagnosed with Prostate Cancer and their Caregivers locally and on-line Worldwide

[Patrick Turner]

Hi Timbaker,

I am presently on Xtandi, for last 6 weeks, also on ADT monthly Lucrin shots, and I just finished 4 shots of Lu177 which has worked far better than chemo with far less side effects. I've been fighting Pca since 2009, Gleason 9, inoperable, had EBRT in two lots, Cosadex and Zytiga also, and I am too busy to get fatigued or depressed because Lady Luck installed a "Be Active" genetic trait in me and I thank her. Since 2006 I cycled 140,000km, and got both knees replaced during this cancer battle, and might get a new hip or two soon because Lady Luck wasn't kind enough to give me the right genes for an extended athletic ability. Chemo had the worst effect on me but I rode a bike every day, went out for lunch, and tried to make a few friends as must be done to stop going mad as I age. 

So far, side effects of Xtandi are low with regard to heart rate, much less for me than Zytiga. But I do get one good hot flush a day, but that might be because I ain't cycling 220km a week like last year, and all during previous treatments. One hip gets sore in day a little, and at night, and its not just the Pca mets in femur and pelvis nearby, its cartilage wear, probably sped up by previous EBRT and the inevitable premature aging effect of ADT.

I was also a building worker for 25 years. 

I am only able to live so long. Aunty Destiny can be so unkind, and Unkel Fait is the same, such bad relations, IMHO, but I live each day OK.

I need to get a skin check today. All that time in the sun during youth has caught me up....

It was a cold night, but today has brilliant sunshine, 20C, so what more could I want? 

Patrick Turner. 

[Mishka@wn.com.au]

Thanks to all contributors to this interesting and important thread so far. I tried unsuccessfully to reply to Tim a day or so ago. Trying again here now, why do different forums have so many ways to confirm reply POSTS... 

 

Hi Tim,

I've been on Xtandi  2 x 40mg daily for just over three months, in addition to 4 monthly Lucrin depot injections. 

My brief Prostate history:   Laparoscopic removal of prostate in October 2013, Gleason score 9 but cancer was contained within prostate...

 

Excellent bladder control after 8 months but PSA started to return year after operation.

Irradiation of prostate bed 40 treatments(approx.)  Which decreased my bladder control again...  PSA started to return about year later and I  commenced Lucrin depot injections thereabouts, which have kept my PSA in check until earlier this year when it started to increase again.

 

Have accurate figures and dates but haven't collated them properly yet. Last year a full body CT scan showed small tumor on left lymph node near hip. Unsuitable for cyber knife treatment due to proximity to major leg nerve.

Commenced Xtandi  on 15/02/2019 and PSA declined immediately, also recent CT scan showed tumor on lymph node had reduced to half it's size. 

 

Penis size not often discussed here that I've seen..? My experience was approx 2.5 cm decrease in penis length following prostate removal which did not improve in time.  As someone uncircumcised, my flaccid penis became mostly foreskin. 

 

The one consequence I noticed since using Xtandi is that the diameter of my penis appears to have reduced by at least 50% and like  a cooked length of noodle it now has no rigidity whatsoever, to the point where I cannot pull my foreskin over my penis head.  My ssecialist has advised that will probably stay... Small price to pay if it keeps PSA and tumor at bay.

 

I have never been prone to seizures but specialist did not particularly warn me of increased risk using Xtandi... My 80mg daily is a low dose I believe.

 

My wife and I lost interest in traveling several years ago and have not been overseas since treatments began.

Following your seizure comments I did a quick check.  

 

Pubmed indicates at: https://www.ncbi.nlm.nih.gov/pubmed/29222530 that : "In controlled clinical studies, 0.5% (10 of 2051) of patients experienced seizure, but patients with a history of or risk factors for seizure were excluded. Men with mCRPC and seizure risk factors have an estimated seizure rate of 2.8 per 100 patient-years without enzalutamide exposure."

 

I'll be interested to see if anyone else comments on their Xtandi experience.   Best Regards,   Mishka

 

[Clive]

Hi Tim,

 

I am on Enzalutamide plus hormone therapy as part of the Archer trial. The results have been absolutely fantastic. My prostate cancer had metastasized to the pelvic bone but under the joint treatment it faded and soon could not be detected by the 3 monthly bone scans as part of the trial. I also currently get 3 monthly CT scans  plus a lot of blood tests (including PSA). The issue is that I have had little or no side effects. I do get tired easily but I that may be just old age. My PSA had gone up to around the mid 90s just prior to treatment (and Gleason score of 8. My prostate previously was described to me as enormous which was responsible for very severe waterworks issues) but within 6 month of treatment it was down to normal size and my waterworks were greatly improved. However there is now some new growth on my prostate and the waterworks problems seem to have returned with a vengeance. There is to be a meeting between my oncologist, radiation oncologist and urologist to work out a future plan that will also allow me to remain in the Archer trial. Radiation therapy or Radiation Therapy plus minor Turp seem to be the preferred routes.

 

Anyway, to answer your question, everyone is different but I have had little if any side effects from Enzalutamide combined with hormone therapy and the results have been great.

 

Best Wishes.

[Clive]

On the issue of travel insurance. I have booked a holiday in the USA and Canada for my wife and I. Whilst I could (eventually) fully insure my wife (who has heart problems) I was not able to insure against the cancer in myself. I am insured against anything that is not related to my metastatic prostate cancer. (Even though the cancer can no longer be detected outside of the prostate its still classed as metastatic because they consider it still there but too small to be detected.) It may be easier to insure against cancer when traveling to other parts of the world where the costs of emergency treatment would be more moderate.