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Zoladex 10.8 loss of side effects .

User
Posted 06 Jun 2020 at 11:23

I was given my second Zoladex injection on the 13 May. At the end of May I put in for a repeat prescription electronically and it showed that the next injection was due on the 18 June. I contacted the GP and was told that the injection I have been given was for 3 months as per instruction. My problem is that in the last few days I haven't been having many hot flushes. Up until Wednesday the hot flushes were almost constant, could it be that my body is getting used to the Zoladex. Has anyone else had this problem? 

User
Posted 08 Jun 2020 at 08:55

Originally Posted by: Online Community Member
When I had my treatment I kept dates of everything ‘ key dates ‘ I called them and wrote them down , in total besides the hormone tablets I had 3 zoladex 3monthly

Yes, I keep a detailed diary, as an Excel spreadsheet. I record all medication changes, PSA test results, all appointments - who with, summary of what discussed, and actions. After almost 2 years and an untypically complicated diagnosis phase, it runs to 3 pages when printed out. Actually, I keep a second one too which is much more detailed and includes day to day symptom changes, details of each RT session, etc. This one now runs to 11 pages.

I also keep all my blood test results in a spreadsheet, and medications in another, and take spare printed copies with me to appointments, several copies in the case of inpatient stays. As each different clinician asked me about my meds, or eGFI, or whatever, I could just give them a printout, and I got so many responses "Wow, I wish everyone did this".

I've also found them useful in my work supporting other patients. I was doing a presentation to other patients "Surviving Hormone Therapy" on Friday, and I got a very typical type of question, "How long before you lost your body hair?" A quick check in my spreadsheet diary, and I could answer that it started at 17 weeks, not the sort of thing I'd have any chance of remembering a year or more later without the diary.

My consultants, and other consultants I work with who aren't mine, have occasionally asked me questions, knowing I keep such detailed information.

I think for me it's also part of being in control of my disease, something that's psychologically important.

User
Posted 07 Jun 2020 at 15:09
Hi Malcolm - "Oncologist told me psa will rise as long as gradual and no spikes and the magic number of 2 !!!! "

A smiling comment. See my profile as a few spikes rather than gradual which rang bells at times but treatment ended Aug 2008 and I'm still here.

Good luck

Ray

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User
Posted 06 Jun 2020 at 15:32

I don't think you have anything to worry about. You had 10.8 in February, you had 10.8 on 13 May (we think), and now you have seen a prescription which implies you need another injection about five weeks after the last one - someone is not doing the admin properly but I think they are doing the injections properly.

I guess you are worried they gave you a zoladex 3.6 mg last time. Well if they had it would not be out of your system until 10 June, and even then it would take a while for your testosterone to recover. So I think if you are noticing changes in your body it is not because you are coming off zoladex. You may be getting used to it.

I do sympathise with you being concerned. If they have got the admin wrong regarding the prescription can you really trust them to get anything else right! If you can check the past prescriptions on line and the future prescription and they all say 10.8 then things are almost certainly OK.

I had a similar problem with mislabelled test results. It is worrying and I had to be quite persistent to get it confirmed that they had done the correct test and it was just a computer error. I was satisfied in the end, but annoyed that all test from the lab had been mislabelled for several years and no one noticed.

So just to reiterate; your change in symptoms could be caused by either coming off zoladex or getting used to zoladex, but as far as I can see the timing is not consistent with coming off zoladex. 

Dave

User
Posted 06 Jun 2020 at 15:43

Thanks for the info Dave I feel a bit better about it. I've not been too happy with the GP lately, even before the covid 19 kicking in,they always seemed to be a bit offhand. I suppose that happens when you have to explain every detail to the highly trained receptionist first. 

User
Posted 06 Jun 2020 at 16:17
The reduction in hot flushes could be, in part at least, down to the change of weather - they do tend to be worse when the weather is very warm.

I think it is great advice to just check the May prescription was indeed for 10.8mg but to be honest, I would be more bothered about getting confirmation at future appointments that the nurse is indeed giving you the correct dose - maybe get into the habit of asking him/her to read the label to you before they do the injecting. Then at least you won't ever need to wonder. It's not that I have trouble trusting people but ...

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jun 2020 at 17:10

That's a good idea, not one I would have thought of. It was funny that I hadn't seen that particular nurse before, as I've had many a blood test taken there. I will definitely ask on my next injection or before if I 'see' a doctor. 

User
Posted 06 Jun 2020 at 17:51

I saw a reversal of some side effects when just about to start my RT, and was concerned.

GP was happy to give me a testosterone test, which came back as 0.2, so that was OK.

User
Posted 06 Jun 2020 at 17:59

Thanks these replies are making me feel a whole lot better. I don't feel so uptight about it all now. I really appreciate everybody's input. 

User
Posted 06 Jun 2020 at 20:18
When I had my treatment I kept dates of everything ‘ key dates ‘ I called them and wrote them down , in total besides the hormone tablets I had 3 zoladex 3monthly . So after 20 fractions , I had the follow up appointment with my oncologist and as it worked out it was on my 65 th birthday !!! So he told me my psa readings down to 0.03. And he told me no need for any more injections just 6 monthly psa tests . So 12 sept reading 0.01 , so next reading in mar , but I had to see my doctor in February to renew my tamsolin tablets , when I saw him he was concerned that I never kept up the injections , and he said better have a psa Reading now instead of waiting !!! I told him I remember it vividly seeing it was my birthday that the oncologist said no more injections , but he never updated my records to my doctor ! So the result of my psa test, February was 0.06 . Oncologist told me psa will rise as long as gradual and no spikes and the magic number of 2 !!!! So I am glad I kept a list of key dates etc ! Also I asked for my medical records which I found interesting what I could understand ???
User
Posted 07 Jun 2020 at 11:02

Hi Malcolm I'm glad to hear that you keep the dates for whatever happens. I do the same and I've found it invaluable at times. I must be due a PSA test soon as I have an appointment with Oncology on the 23rd, whether that will be by phone or not we have to wait and see. Thanks for the info keep smiling and stay safe. 

User
Posted 07 Jun 2020 at 15:09
Hi Malcolm - "Oncologist told me psa will rise as long as gradual and no spikes and the magic number of 2 !!!! "

A smiling comment. See my profile as a few spikes rather than gradual which rang bells at times but treatment ended Aug 2008 and I'm still here.

Good luck

Ray

User
Posted 08 Jun 2020 at 01:34

Originally Posted by: Online Community Member

I must be due a PSA test soon as I have an appointment with Oncology on the 23rd. 

Hi wavy, don't expect anyone to call you in for this. I have to call the Gp surgery and book an appointment for bloods. From what you have said of your gp surgery so far, I think you will need to be proactive and book an appointment very soon so you can tell the oncologist what the psa is. Sadly when you phone up the receptionist for the result, she will probably just say "normal" and you will have to fight with her to tell you the actual number, better to get the results printed so you can be certain what it is. 

Dave

User
Posted 08 Jun 2020 at 08:55

Originally Posted by: Online Community Member
When I had my treatment I kept dates of everything ‘ key dates ‘ I called them and wrote them down , in total besides the hormone tablets I had 3 zoladex 3monthly

Yes, I keep a detailed diary, as an Excel spreadsheet. I record all medication changes, PSA test results, all appointments - who with, summary of what discussed, and actions. After almost 2 years and an untypically complicated diagnosis phase, it runs to 3 pages when printed out. Actually, I keep a second one too which is much more detailed and includes day to day symptom changes, details of each RT session, etc. This one now runs to 11 pages.

I also keep all my blood test results in a spreadsheet, and medications in another, and take spare printed copies with me to appointments, several copies in the case of inpatient stays. As each different clinician asked me about my meds, or eGFI, or whatever, I could just give them a printout, and I got so many responses "Wow, I wish everyone did this".

I've also found them useful in my work supporting other patients. I was doing a presentation to other patients "Surviving Hormone Therapy" on Friday, and I got a very typical type of question, "How long before you lost your body hair?" A quick check in my spreadsheet diary, and I could answer that it started at 17 weeks, not the sort of thing I'd have any chance of remembering a year or more later without the diary.

My consultants, and other consultants I work with who aren't mine, have occasionally asked me questions, knowing I keep such detailed information.

I think for me it's also part of being in control of my disease, something that's psychologically important.

User
Posted 08 Jun 2020 at 12:55

Wow I am impressed, I used to do things like that but I just seemed to lose my interest in it. I've not been comfortable using the computer at home for a long time, and just can't bring myself round to sitting using it. I use my phone for all this as I find it easier to use, most of the time anyway. I did enjoy using computers when I needed to do work in the office, but now I've retired I don't have that escape route anymore. Lol. 

User
Posted 09 Jun 2020 at 16:42
Andy 62 , very impressive with detail and yes ( even thou different men react differently ) would help other men .
User
Posted 10 Jun 2020 at 01:15
I have most of my records, except Bone Scan of 10 pr so years ago, I asked for and got a DVD of my CT and Bone Scan done this year, all my blood test results, I keep notes of all GP and Hospital appointments, it is amazing to me that my GP only sees my Blood and scan results when I show them.

Chris.

14 years and counting!

User
Posted 08 Dec 2020 at 14:23

Hi I have been on Xolidex every 12 weeks for almost 2 years  now . Side effects including hot flashes joint pain and general fatigue have generally reduced .I have   put down to my body becoming used to the drug .I still do get these symptoms but not as frequently as in the early stages of treatment. Weight gain around my middle and a reduction in muscle tone has been tough to deal with and I combat both by cycling and walking as much as possible. 
Hope this helps

User
Posted 08 Dec 2020 at 15:06

Thanks Mountain man yeah that's a great help. I've just finished the third course and now I've been taken off the Zoladex for the time being, as I've had my 20 sessions of radio therapy. I'm still having the hot flushes but now it's mainly in the evening and night time. 

 
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