View Full Version : a new TCX2-er
Hello to everyone. It grieves me to read what you have been or are going through and hope you are well.
12 years ago I had TC which was seminoma stage 1. Following the operation and radiotherapy life has been great ever since. I've fathered 2 smashing boys with only one testicle.
Sadly I am now recovering from having my remaining testicle removed which was another seminoma. The good news was that the CT scan before the operation showed there had been no spread and the blood test one week after the operation showed the count had gone back down to normal.
Pleasantly surprised at the lack of pain after the operation. Whether it is due to the cut being in a different place to last time I don't know. (A vertical cut as opposed to an angled cut.)
Just waiting now for an appointment to see the oncologist to discuss what happens next
One thing of interest reading some of what is posted here is talk of testosterone. That hasn't been mentioned to me at all so I will go and have a chat with my doctor.
Looking forward with great enthusiasm.
All the best. Lee
Aegletes
03-03-09, 10:06 AM
Seminoma twelve years apart. Well, that sounds familiar (see my signature below)! As to your testosterone question, your urologist should have addressed that at the same time you were diagnosed with TC2. You should get started immediately on a gel (AndroGel or Testim) and should be evaluated in a couple of weeks (a blood draw to test total T, free T, E2, hematocrit, etc.) to see how you are responding. Some men ultimately move on to IM injections but most doctors start patients on gels first as they are easier to apply. It's important to be put on TRT immediately as you no longer have significant endogenous testosterone production and are therefore at risk of loss of muscle and bone mass and of mood changes, low libido, etc.
Welcome, Lee. I changed your title, as requested. Excellent news on a 12 year survivorship...and counting...and two post TC sons! Sorry about TC-2, but you'll get lots of support here.
Thanks Aegletes.
Unfortunately there was no mention of testosterone at all. It's approaching 4 weeks since I had the operation so I'll get an appointment as soon as possible.
Bit of a shock getting it again after so long. At aged 42 I'd hoped not to have it again.
Thanks for the welcome Karen and for changing the title. Having two lovely boys and a daughter as well gives me all the encouragement needed to fight through what life has to throw at me.
Aegletes
03-03-09, 12:17 PM
Unfortunately there was no mention of testosterone at all. It's approaching 4 weeks since I had the operation so I'll get an appointment as soon as possible.
How are you feeling? With no endogenous testosterone production, I'd expect you must be noticing its absence. Your doctor should have gotten you started immediately upon your second IO. You're not the first TC2 guy here to report a delay in getting set up for TRT but, to be honest, I'm really surprised by this. I hope you get started soon. You'll feel much better once you do.
Bit of a shock getting it again after so long. At aged 42 I'd hoped not to have it again.
Your case practically mirrors my own. First one at 30, second at 41, both seminoma.
And yes, it's quite a shock, like you just got punched in the stomach. While TC2 is very rare, there are enough of us on this board to help with any questions. Just reach out. We're all here to help.
How are you feeling? With no endogenous testosterone production, I'd expect you must be noticing its absence.
I feel fine, nothing has changed as to how I feel. If I hadn't read about TRT on here I'd never have known about it. Although that doesn't mean it won't change and I will get it sorted.
While TC2 is very rare, there are enough of us on this board to help with any questions. Just reach out. We're all here to help.
Thanks. While obviously not happy about others having the same troubles, it is good to know there is someone to talk to.
AdrianE
03-03-09, 02:29 PM
Hello there,
I'm sorry to see you joining the elite ranks of the TC2 group. There's quite a few of us here to help you with any problems or questions you may have. Feel free to ask.
As for the testosterone issue, I'm very surprised that HRT hasn't been offered to you by your doctor yet! That does not seem right at all. I'm also surprised that you aren't having symptoms of deficiency....how many testicles do you have exactly?:)
Just kidding, let us know how the follow-up goes at the doctors,
Adrian
kurt Hansen
03-03-09, 02:55 PM
Hi
Sorry to hear your storie I never thoght that I would get it again but i did 20 years later.'It is hard to deal with second time and I was down for a long time, but today I feel much better I don`t think so much about it anymore.
I hope for you that you don`t have to have futher treatments good luck
Hey Lee,
Know what you are going though, I was 7 years apart (last July).
You really need to get onto Testosterone replacement ASAP, I found this a huge positive as thinking back with the last one being ‘faulty’ I was on the low side when the last op occurred. Now I am better than I have been for years. Sometimes you don’t know that you could be better until you are better.
Depending on what part of the world you are in will determine who will do this for you, the Urologist or GP may refer you to an Endocrinologist wots that:confused: http://en.wikipedia.org/wiki/Endocrinologist
This is an Australian site so some of the names and drugs available will be different but I believe is a great clear knowledge base to start with.
http://www.andrologyaustralia.org/pageContent.asp?pageCode=LOWTESTREPLACE
Mate you need to get on the Testosterone NOW, don’t let them delay
Cheers
Kiwi :) :)
Thank you for your kind words :)
kiwi....I'm in the UK and will look through the links, thanks.
I've been to see the GP this morning about the testosterone and he said it is best to wait until I have seen the Oncologist before doing anything.
Aegletes
03-04-09, 08:20 AM
(...)
I've been to see the GP this morning about the testosterone and he said it is best to wait until I have seen the Oncologist before doing anything.
Why? I'm rarely this blunt but, to be honest, I just don't understand why the urologist who performed your IO did not have placed you on TRT immediately. My own case (seminoma stage I, 12 years apart, etc.) is similar to yours but for one respect: I was diagnosed hypogonadal shortly before being diagnosed with my second TC and was promptly put on TRT by an endocrinologist. Had that not been the case, the urologist who performed my second IO procedure assuredly would have put me on TRT immediately.
AdrianE
03-04-09, 06:57 PM
Yeah, I have to aggree with Alex. There is no reason for this delay. Testosterone is not a "nice to have" sort of prescription. It is a necessary hormone for normal male function. This is just another example of a doctor not being informed of the importance of this! While an endocrinologist should monitor your prescription, any doctor can get you started on HRT in the meantime. You shouldn't even have to be asking them, they should already have started it for you.
Sorry to sound mad, but us TC2 guys have a tendency to be pretty protective about our testosterone..........
Adrian
Welcome Lee,
Sorry to hear you had a second go round but glad to have you here.
Hi Lee
Getting on the Testosterone will have zip zero nil impact on the Oncologist, don’t know what drugs the doc is on but I would be insisting on a referral to someone that can prescribe the T for you. Weather it’s a Urologist or Endo, I would assume that a Urologist did the operation I would get on to them.
My med team were ok if I skipped appx 4 weeks at the start but wanted me started ASAP for my own well being.
Wishing you luck with getting to see the appropriate person.
Sorry Lee but like Adrian said we do get a bit grumpy over this type of treatment and lack of understanding from the Med profession. Just trying to look out for ya.
Cheers
Kiwi :) :)
Sorry Lee but like Adrian said we do get a bit grumpy over this type of treatment and lack of understanding from the Med profession. Just trying to look out for ya.
No need to be sorry, it drums home what I have to do and is much appreciated.
I've booked an appointment to see a different GP at my practice. Appointment isn't until Tuesday but will try and get an earlier cancellation.
Hey Lee
When you see the GP dont leave without getting the paperwork to get your testosterone level tested its a blood test that they like to take first thing in the morning as this is when your levels are supposed to be the highest. And make an appointment to get back to get the results. If the doc catn't or won't give prescribe the Testo ensure you have referral to someone who can but INSIST ON GETTING A SCRIPT.
There is a low Testo quiz here these are some of the common things to look for and could help with the GP visit
http://www.seekwellness.com/andropause/adam_quiz.htm
My Levels
Been monitoring my Testo Levels that have been in creasing slowing since I started last year and was just on normal with the bottom level figure this week I smack bang in the middle of the Australian normal:) but I know that when I wake up in the morning:eek:.
Cheers
Kiwi :) :)
Aegletes
03-06-09, 08:09 AM
Lee,
Just to reiterate: without testicles, you will have negligible testosterone levels, limited to whatever is secreted by your adrenal glands. This means that to maintain bone density, muscle mass, among many other things, you will need to be on TRT. Unlike men who have one testicle remaining, the situation of TC2 guys is rather simple: exogenous testosterone becomes your primary source of this critical hormone. I can't imagine why you would need to have any blood work done before beginning therapy under these circumstances. Blood work will be needed after you begin TRT to gauge the success of the dosage you'll be on. I wouldn't leave a doctor's office without a script for some form of testosterone therapy. This should have been done at the time of the IO if not before, in fact. Very best of luck but do insist on being given treatment.
Alex
pcwilson
03-06-09, 03:51 PM
Hi Lee
Did you perhaps get testosterone pellets implanted during the IO? I had a six month supply implanted during my IO for TC2; they were under the skin near the IO incision, and felt like a line of pencil leads. I would expect your urologist to have told you this would happen, but it's easy to not take everything in when you're world is falling apart again.
If it helps, I found the pellets quite a good method of replacement, but they're considered old fashioned now. I'm currently on gel. I use one 50mg sachet of Testogel a day, which I rub on to my upper arm and shoulder after my morning shower, then wait a couple of minutes for it to dry before putting my shirt on. It really is very little hassle. Apparently gel mimics the bodies natural 24-hour testosterone production cycle quite well. I've not tried injections so can't comment.
FYI - When my pellets were running out and before I started gel, I suffered terrible night sweats, hot flushes, and mood swings. I really was a nightmare to be around. As others have said, if you're not on TRT already, do everything you must to get started. Low T is not nice.
I'm in the UK too by the way.
Cheers
Phil
Hi Lee
Did you perhaps get testosterone pellets implanted during the IO? I had a six month supply implanted during my IO for TC2; they were under the skin near the IO incision, and felt like a line of pencil leads. I would expect your urologist to have told you this would happen, but it's easy to not take everything in when you're world is falling apart again.
No sign of any pellets.
Just been to see a different GP after getting a cancellation. I am weak, I've come away with nothing been done. My GP said he is going to contact the oncologist before he does anything.
From what you all say I should be on something now but I am happy after having a chat with the GP that he needs more information before giving treatment. At my practice, out of thousands of patients they have only had two cases of TC and I'm both of them. It's a bit of an unknown territory for them.
I went armed with all the information gained from here but when it came down to it I felt I had to let the GP be happy with what course of action to take.
As I've said, everything said on here has been very much appreciated.
pcwilson
03-09-09, 05:36 PM
Lee, don't be fobbed off by your GP. As you're discovering, GPs in the UK are ignorant when it comes TRT. If he needs TRT advice he should be contacting a urologist or endocrinologist, not an oncologist. Most urology departments in UK hospitals have a urologist who doubles as an endocrinologist.
I had a real battle to get TRT when my pellets ran out. I was told the pellets would last 6 months and then my urologist would get in touch to discuss TRT options. But by 4 months I was starting to feel bad: night sweats, hot flushes, mood swings, lethargy etc... I called his secretary each week; she insisted I would get an appointment shortly but it never happened. All the while my symptoms of low T were getting more frequent and more severe.
Eventually I asked my GP for help, but he was reluctant to get involved because as far as he was concerned I was under the urologist. After several increasingly acromonious appointments, I finally refused to leave the surgery until he phoned my urologist for advice. To my eternal shame, I actually threatened violence, and I'm the most mild mannered man you could meet. I felt like a child having a tantrum, but it finally got through to him. After a wait of several hours, the urologist called him back and told him what to prescribe. I was rubbing on my first dose of Testogel 10 minutes later and I've not looked back since.
Call that GP every day until you get a result. Don't let him drag his heels.
AdrianE
03-09-09, 11:49 PM
Hello again,
Well this thread has really gotten the TC2 crowd all worked up! I have to laugh at the threat of violence, but I can understand it! I went in to my appointment with the urologist armed with a stack of paperwork and a very well rehersed arguement. He didn't stand a chance, but threatening to throw him out the window was lurking in the back of my mind.:)
The lack of information and the ridiculous way doctors drag their heels in this type of situation is so frustrating. Living with the symptoms of low testosterone is brutal, anyone who is the least bit informed would never make a man wait to get some HRT started. I would keep at this, if the GP is reluctant to act until the oncologist says ok....then contact the oncologist yourself and ask him. Just bypass the doctor altogether.
Keep us updated,
Adrian
pcwilson
03-10-09, 04:42 AM
I have to laugh at the threat of violence, but I can understand it!
Adrian
Looking back now, I can laugh too, but I still find it ridiculous that it had to come to that. And as Lee is finding out, the situation doesn't seem to have improved.
Lee -- You will be ok for a period of time but keep on the docs case - can you get to the Urologist directly?
I am sure that when you get on the T you will realise why we are pushing to get it started ASAP.
Cheers
Kiwi :) :)
Well, I think I had my first signs of testosterone trouble last night when, on a couple of occasions, I went very hot. It was like I was sweating but there was no sweat there. I felt clammy to the touch. It only lasted for a very short period of time.
The problem I have with the GP is that he wants to make sure that giving me TRT doesn't affect the cancer. It's a case of him not knowing and making sure he gets it right.
My problem here seems to lye with the urologist. Even though I'm signed off with him I'll try and contact him. I'll give my doctor a couple of days to contact me after speaking to the oncologist.
I'll try and resist beating my GP up next time I see him :D
I daren't ask at what point should anyone ask me about prosthesis
Aegletes
03-10-09, 09:25 AM
Lee,
As you can tell, we TC2 guys don't take kindly to signs of medical ignorance where testosterone is concerned. I'm appalled at the willful ignorance in the medical community. This doesn't just affect TC2 men like us. Any man facing hypogonadism is in for a struggle to find competent doctors to treat low testosterone. I think what bothers everyone here is that TC2 cases are really very straightforward: we need exogenous testosterone. The urologist should have put you on it immediately. It was irresponsible of him not to. As for prostheses, this subject too should have been brought up at time of diagnosis at least to avoid the need for additional surgery down the road.
Alex
pcwilson
03-10-09, 01:02 PM
I'll try and resist beating my GP up next time I see him :D
I daren't ask at what point should anyone ask me about prosthesis
Resist beating up your GP, but only to conserve the energy to give your urologist a damn good hiding :D I can't believe that not only did he not discuss TRT, he didn't discuss prosthetics either :eek:
Looking to the future, there's some good info for hypogonadal men at Nick O'Hara Smith's Testosterone Deficiency Centre here http://www.androids.org.uk/.
Hi Lee,
Can you bang on a few doors until you get a doc that undertands?
Have you had your Testoserone levels checked yet? If you could you get vback to the doc and get the appropriate paper work.
When did the doc you seen the other day say he would have a responce for you or when do you see next?
Its the docs that should be guiding you through this and if they are not experienced they should be referring you to somone who is.
Hoping that you get this sorted out soon and you manage to find a good doc.
Lee, if I was closer I would come and bang on the doors with you, but Oz is a bit too far away.
Thoughts are with you, let us know of any updates.
Cheers
Kiwi :) :)
Thanks again.
Lee, if I was closer I would come and bang on the doors with you, but Oz is a bit too far away.
Touching words kiwi :). If this would have gone on any longer I'd have flown out to you to get your doc to give it me :D
Good news. The oncologist rang yesterday. I've an appointment to see him next Tuesday. He is going to give me some gel for starters and then I will be on a 3 month injection course :)
Bad news. He told me I will be having 1 dose of chemotherapy. I must say I've been dreading having to have chemo.
When I had TC1 all them years ago, I was asked if I would go on a trial to have chemo instead of radiotherapy. Without a second thought I said yes, I would do anything if it meant helping others. As it happens I wasn't selected to have the chemo and had radio instead and was monitored by those doing the trial. Now today it seems the trial was successful and I now have to have chemo. I suppose it's the fear of not being well afterwards, it's what your mind thinks when you hear the word chemotherapy. Some of the conversation with the oncologist is a bit of a blur but I think he said that I couldn't have radio again anyway on the same area, which makes the successful use of chemo good. I'm sure everything will be OK and like most things it will soon be over and become just another memory.
AdrianE
03-12-09, 01:30 PM
Hey there,
I'm glad to hear that you will be getting what you need in terms of HRT very soon. You will be surprised at how much better you feel once you get that going. As for the chemotherapy, I'm sorry to hear about that. I hope that you will be able to get it done and over with before too long and get back to living!
Adrian
Lee,
Sorry to hear about all this nasty news. Based on TC2 being seminoma, is the onc recommending one or two doses of carboplatin?
Hi Paul,
I'm sure he said it was going to be one dose, although I was thrown a bit when he said I would be having some. I'll find out more when I go to the appointment next week.
Aegletes
03-12-09, 01:53 PM
Lee,
Was your second seminoma also stage I (I know your first was). Like you, I had XRT for TC1. My oncologist at Sloan ruled out adjuvant carbo because the risks (not yet fully known) associated with adjuvant carbo in a patient with prior XRT (which itself results in greater risk of secondary cancers) weren't fully justified given the high likelihood of the IO for stage I seminoma being curative. Given how you feel about chemo, can you discuss your case with another oncologist to obtain a second opinion. Again, if this is stage I seminoma again, you really should not feel locked into adjuvant therapy. With prior XRT, surveillance is something to consider. I guess I'm just saying you do have options.
Alex
Hi Alex,
All I know is that it is seminoma and don't know what stage it's at. I know the CT scan was clear prior to the operation and the blood test one week after the operation came back normal. Contact so far with the oncologist has been a brief phone call so the meeting next week should reveal all.
Smartie
03-12-09, 04:18 PM
Hi Lee. Just wanted to extend a welcome.
If the CT is clear and bloods are normal, you are stage 1. They will only offer you the single dose carboplatin treatment if you are stage 1. If you were at a more advanced stage, you would probably get 3xBEP.
A few guys on here have chronicled their experience with single agent carboplatin. Do a search on the word "carboplatin" and you'll find them.
All the best.
pcwilson
03-12-09, 04:29 PM
Hi Lee
Good news about the TRT :)
Not so good about the chemo :(
As my signature says, I was stage I teratoma in 1997 and opted for surveillance. I was stage I seminoma in 2007 and opted for surveillance. I have so far managed to avoid RT and chemo. If surveillance is an option for you (based on staging etc...) give it serious consideration. It is a valid treatment option. I wasn't offered surveillance for TC2; the onco assumed I'd just take adjuvant RT because it's the "standard treatment". He was a bit taken aback when I pushed for surveillance again. He tried to compromise on a single dose of adjuvant carboplatin which seems to be gaining in popularity amongst oncos in the UK.
A few guys on here have chronicled their experience with single agent carboplatin. Do a search on the word "carboplatin" and you'll find them.
Hi Nick and thanks for the welcome.
There has been one or two things I've chosen not to read about mainly for the reason of not wanting to know. However, last night I did the search and read through a few of the experiences. It was a good move and I can't believe how much better I feel about things today. Thank you.
As my signature says, I was stage I teratoma in 1997 and opted for surveillance. I was stage I seminoma in 2007 and opted for surveillance. I have so far managed to avoid RT and chemo. If surveillance is an option for you (based on staging etc...) give it serious consideration. It is a valid treatment option. I wasn't offered surveillance for TC2; the onco assumed I'd just take adjuvant RT because it's the "standard treatment". He was a bit taken aback when I pushed for surveillance again. He tried to compromise on a single dose of adjuvant carboplatin which seems to be gaining in popularity amongst oncos in the UK.
I think I am the type that would prefer to have some treatment instead of being on surveillance, it's just a mind thing. Although after treatment I'll be on surveillance anyway,
I was talking about treatment to my wife last night and when I mentioned that surveillance is an option that some people are given she said no way, knowing that for me treatment would be a better option. That's that sorted anyway :D
It will be interesting to see if I am given any options at the meeting.
Hey Lee
That’s fantastic – really rapped for you!!:):) To be seeing the doc and getting the T, guess you want to discuss the Chemo options to get them clear in your mind.
I hope the doc Tests your T levels, when I started last year I agreed with the Endo that to give me a kick-start and start getting the levels up I had my injection and for the first 2 weeks had a half cut of gel. That worked for me like magic!
With the long term injections (certainly Reandron and others I have seen) it seems normal to have the second injection about 6 weeks after the first and then the third about 12 weeks later. Keep an eye on the signs of low T near to the end of the time I started to get tired and some other things weren’t functioning as well as they had been :( so we decided after the first 12 week one that the duration would be dropped to 10 weekly cycles and monitored for about 9 months before we review again. I am to get T levels checked 2 weeks after each top up and 4 days prior to the each top up.
f.y.i the Injections are deep and in the butt, I have not had any problems with them but some guys will, my doc recommends to take some strong panadine a short time before the injections but I have a high pain tolerance. On the first two injections I experienced some hot flushes for about 2 days but nothing on the ones after that.
You can ask the Uro about prosthesis if you are interested too.
Cheers
Kiwi :) :)
Aegletes
03-13-09, 07:39 AM
(...)
It will be interesting to see if I am given any options at the meeting.
Assuming you're stage I (which you should have been told by now), you and I are effectively in the same boat. I'll give you the perspective of my oncologist at Sloan-Kettering: because of the risks associated with TC1 XRT, he ruled out any adjuvant therapy for TC2, putting me on surveillance by default. Surveillance is more of an emotional challenge than a physical one. Just do make sure that you weigh all the risks and factors that go into whatever decision you make. Incidentally, because of your prior XRT, I would expect your oncologist will want the records from your treatment. He needs to be aware of the extent of your treatment field and the amount of radiation to which you were exposed. Best of luck at your appointment.
As for your testosterone levels, I really hope your doctor does not waste more of your time by testing testosterone levels before putting you on treatment. There really is no point to testing you until the doctor gets you started on replacement therapy. After you begin TRT is the time to begin testing to make sure you're getting the proper dosing. I'm very sorry you've been made to wait for what should have been addressed immediately.
Alex
pcwilson
03-13-09, 04:02 PM
I think I am the type that would prefer to have some treatment instead of being on surveillance, it's just a mind thing. Although after treatment I'll be on surveillance anyway,
I was talking about treatment to my wife last night and when I mentioned that surveillance is an option that some people are given she said no way, knowing that for me treatment would be a better option. That's that sorted anyway :D
Nobody knows you better than you know yourself. If you don't think you can stand to "do nothing" then carbo is probably the right choice for you. Like you, my wife really wasn't happy with surveillance, but looking back now she understands why I did it.
I was the opposite mindset from you. I couldn't stand the thought of poisoning my body with chemo or radiation - with the possible short and long term complications - when there was a damn good chance (80%+) that I was cured by surgery alone. I'm 15 months post-TC2 and all clear so far, but I'm not naive enough to think I'm out of the words yet. If I do have a recurrence, I'll take the chemo knowing that I actually need it.
I think the decision is so tough because there are no bad options. Take the adjuvant therapy now and reduce the risk of recurrence to circa 1%, or play the odds and "do nothing" now safe in the knowledge that chemo will almost certainly cure you should you relapse later.
I don't know if you've seen the surveillance schedule for stage I seminoma, but it's not that intense. I get 3-monthly appointments with the onco for physical, bloods and chest x-ray, plus 3 MRI scans a year. I'm on MRIs because my onco thought I'd had enough radiation exposure from CT scans when on surveillance after TC1. I believe that surveillance after adjuvant treatment is even less "demanding".
If you've not seen it already, there's a good page on surveillance on the TCRC - http://www.acor.org/tcrc/surveil.html
Again, thank you for the replies. It has helped me no end.
Been to see the oncologist today and I now have some Testogel to take for a month. During this period I'll have an injection, then another one 6 weeks later followed by 1 every 12 weeks. The oncologist is going to be keeping tabs on the testosterone levels to make sure everything is OK.
It is Stage 1 seminoma I have again. I am going to have 1 dose of chemotherapy next week which I think is the best option for me.
After talking to the oncologist for an hour today, I can honestly say I feel great. I've been in a bit of state lately, testosterone problems had kicked in (them hot flushes being the worst) and had generally been feeling down with the whole situation. Sitting and talking to him today has removed all my anxiety and I now know everything that has happened and is going to happen.
Happy years ahead :)
Aegletes
03-17-09, 02:26 PM
Lee,
I'm glad you finally got the testosterone addressed. As for post-IO treatment, what matters most is that you have made the decision that works best for you. I wish you nothing but all-clears going forward. Please let us know how things go. Best wishes!
Alex
Excellent Lee
Sounds like they and hitting you in a similar way to they way I got started. Think I have said it before but watch for the signs of low T as this is why my weeks between top ups were brought back from 12 to 10 weeks. With regular T monitoring we are looking for peaks and lows.
Again Fantastic, you should find that thing will be ‘looking up’ fairly soon.
Cheers
Kiwi :) :)
pcwilson
03-18-09, 09:03 AM
That's great new, Lee. And good luck with the chemo :)
AdrianE
03-19-09, 12:04 AM
Hello again,
I'm very happy to hear that you are now getting your rightful attention for your hormone needs! That took way too long, but I'm glad that it is now being addressed! As for the chemo, I think that what you are comfortable with is the right choice. I'm sure that you have spent a lot of time pondering this decision, and I hope that it all goes smoothly.
Let us know,
Adrian
Cheers.
Gone for the morning approach with the Gel so didn't have my first one until yesterday morning. Still flushing but was told it will take a short while for it to work.
Got chemo booked for next Wednesday and I think I will post a log, like others have, of how it goes as it could be of help to others.
Just need to decide what I'm going to do tomorrow for 2 hours between blood tests for the kidney function test. A good time to start reading the Star Trek books I've had for years :D
Smartie
03-19-09, 03:01 PM
A good time to start reading the Star Trek books I've had for years :D
The James Blish ones?
By the way, no-one here knows I like Star Trek, so keep it quiet, could you? ;)
Aegletes
03-19-09, 04:28 PM
AndroGel will kick in pretty fast. You should notice the effect within 24-48 hours after beginning treatment. And it's good to know there are other Trekkers here.
The James Blish ones?
^^^^ ;) :D
No the books I have are all by different writers, John Peel and Jean Lorrah being two of them.
Looking forward to the new movie coming out this year. Shame they didn't make a movie using the Voyager crew, they were my favourites.
By the way, no-one here knows I like Star Trek, so keep it quiet, could you? ;)
Pssst. It ain't a crime and and it's a big club.:D
Aegletes
03-20-09, 01:31 PM
(...)Looking forward to the new movie coming out this year. Shame they didn't make a movie using the Voyager crew, they were my favourites.
My partner and I liked Voyager but I preferred DS9. Darker and more political.
AndroGel will kick in pretty fast. You should notice the effect within 24-48 hours after beginning treatment. .
Is Testogel the same thing? I'm still having hot flushes 6 days after starting the gel. I can't get a nights sleep due to the sweating and feel terrible due to lack of sleep. Thankfully I'll be at the hospital on Wednesday and they should be able to help.
Aegletes
03-23-09, 01:19 PM
Testogel is, I believe, the UK name for AndroGel. You might be responding more slowly to it than I did but then again our situations in that regard are a little different. I had below-normal levels, not close to zero, before beginning the gel and noticed a difference the very first day I began using it. I believe the manufacturer advises a couple of weeks before a steady-state is achieved but I responded much faster to it. In any event, you'll need to be tested after two weeks of beginning treatment to see if the dose you're on is optimal. I began on a 5mg effective dose but was increased to 7.5 after about a month. I've been on that ever since.
pcwilson
03-23-09, 04:36 PM
Is Testogel the same thing? I'm still having hot flushes 6 days after starting the gel. I can't get a nights sleep due to the sweating and feel terrible due to lack of sleep. Thankfully I'll be at the hospital on Wednesday and they should be able to help.
Hi Lee. I'm on Testogel, 50mg daily, and it kicked in really quickly. My hot flushes stopped within 24 hours. I apply to my upper arm and shoulder every morning after a shower. You can't really go wrong when applying the gel. Could you possibly have a dodgy batch, or perhaps you need two sachets a day?
Thanks Aegletes. Arhhh must be that with me having to wait about six weeks chances are my levels were virtually zero. I'm on a 50mg dose and will see about getting it increased and push for the injections asap.
My partner and I liked Voyager but I preferred DS9 I remember when I first watched DS9 I couldn't get into it and stopped watching it. Then one day Sky were showing repeats at tea time. I started to watch it and saw it through to the end and thoroughly enjoyed it.
Hi Lee. I'm on Testogel, 50mg daily, and it kicked in really quickly. My hot flushes stopped within 24 hours. I apply to my upper arm and shoulder every morning after a shower. You can't really go wrong when applying the gel. Could you possibly have a dodgy batch, or perhaps you need two sachets a day?
I apply it in the same place. Never thought that it could be a dodgy batch. Must admit I did think of using 2 sachets but thought better of it and decided I should see the doctor first.
Hey Lee
I started on Testogel for a couple of days before the injection and then 2 weeks with a half of TestoGel Back Shoulders it was the injection that gace me some hot flushes for the first 3 days the first time and about 24 hours the second time. Lee did you find out what your T levels were when starting or before, I was on the bottom of normal about a week before staring the replacement.
Are you applying at the same time of day in the morning? Thats when it recommended.
Cheers
Kiwi :) :)
Lee did you find out what your T levels were when starting or before, I was on the bottom of normal about a week before staring the replacement.
Are you applying at the same time of day in the morning? Thats when it recommended.
Hi Kiwi, the oncologist took a blood test to check the T level before I started the Gel so I'll ask for another one tomorrow so they can check what the level is at now.
I put it on the same time every morning
Thanks. Lee :)
Hey Lee,
Glad to see things are progressing. I imagine it will take a bit of tinkering with the dosage to get it right, but it will come and you'll feel much better.
As far as the sub-topic of this thread goes, personally (and I am in danger of starting a revolt by my next comment... against me, that is) I think that Battlestar Galactica which just aired its final episode was not only brilliant, but in my opinion BSG eclipsed Star Trek (all of the different series and Babylon 5). "So say we all" (at least I do).
Zsolt
I'm just pleased there is something to tinker with. I'm sitting here thinking what state I could have been in if I hadn't found this forum :eek:
Sub topic :D....being a lover of all things space ships, aliens etc. quite bizarrely I haven't watched a single episode of BSG :o. One day I'll catch a repeat where they show it from the first episode (likely now the series has finished).
Aegletes
03-24-09, 07:35 AM
Continuing on the sub-topic, the BSG finale was perfect. I won't give it away for those who haven't seen it yet but suffice it to say that it was a fitting conclusion to such a well-written and acted series. BSG really does inhabit a completely different place than the Star Trek franchise. Darker, grittier, harsher, it reflects a lot of the anxiety of our time.
Back to the gel. It's interesting that for many here it's but a prelude to going on IM injections. The general guidance I've read is for a blood draw two weeks after starting TRT with the gel to gauge whether or not the dosage needs to be increased. One note: I've been told repeatedly by my endocrinologist and my oncologist that the gel should achieve steady levels over 24 hours such that the time at which blood is drawn doesn't matter. I have to say that my experience is at variance with that. My levels come in > 600 ng/dL when blood is drawn early afternoon but usually under 400 ng/dL by the following morning before applying another round of gel. So while the gel will result in good levels, I've found that the blood test will vary somewhat. The other thing to be sure to test, particularly if you go to a higher dose or move onto IM injections is E2. Elevated E2 can result in erectile problems.
Thanks Aegletes. Yeah no mention of staying on the gel just straight onto injections when ready. Noted the advice you have given. I began on a 5mg effective dose but was increased to 7.5 after about a month.
Been to the hospital today and the doctor has increased my dose to 75mg.
The results of my testosterone level, took last week before I started the gel, are in. The normal range is between 7-27. Mine was 0.3. No wonder i've not been feeling my best. Onwards and upwards from now on.
I also had my one dose of chemotherapy (carboplatin). :)
pcwilson
03-25-09, 04:54 PM
Out of curiousity, how are you going to do 75mg a day? Do you just use 1.5 x 50mg sachets a day? If so, do you guesstimate a half sachet, and where do you store an open sachet?
How was the chemo?
Aegletes
03-25-09, 06:09 PM
In the US, AndroGel is available in 5 and 2.5 sized packets or in a pump, the latter with a set number-of-pumps-to-dosage ratio. Are the same available in the UK? That's how you achieve fractional dosages.
Phil...I have 50mg packets and have to guess a 25mg dose. The remaining 25mg is then thrown away.
Alex...I'll ask about 2.5 packets at my next appointment in 2 weeks. Safe to say I overdid it a bit this morning as there wasn't that much to throw away.
As for the chemo. I was given it at 2PM yesterday. After being given two injections the chemo was then given and took about 45 minutes to go in. I then felt fine for the rest of the day.
Day 1...I've been up about 4 hours now and feel fine with no effects. I have 3 lots of tablets to take which should hopefully keep me feeling OK.
Smartie
03-26-09, 10:31 AM
Good to hear you're doing well, Lee.
pcwilson
03-26-09, 05:35 PM
In the US, AndroGel is available in 5 and 2.5 sized packets or in a pump, the latter with a set number-of-pumps-to-dosage ratio. Are the same available in the UK? That's how you achieve fractional dosages.
I'm pretty sure pumps and 25mg sachets aren't available in the UK. A Testogel pump would be ideal; it would take away the little bit of hassle involved in tearing open the sachet and squeezing out every last drop of gel, although I've got it down to a T now (no pun intended).
Aegletes
03-26-09, 10:14 PM
I'm very much tempted to replace the packets with the pump for that very reason. I'll just need to keep it someplace where nobody might think it's hand soap. :eek:
Hi Lee
When I was on Testogel - half packs / day (25) the recommended to use an appx half one day and the other half the next. Keeping the opened half pack in a specimen jar in the fridge or the 24 hours. As we live in a warm climate they said to keep the full box in the fridge too.
Hope the extra boost helps.
Cheers
Kiwi :) :)
Hope the extra boost helps.
It's helping things along Kiwi. The daytime flushes have stopped but I'm still getting some of an evening/night but not as frequent as before. Could be the chemo messing me around a bit?
Still getting flushes during the night so after seeing the oncologist today I'm now onto 2 sachets. At this rate I'll be running out of body to put in on :D
The wheels have been put in motion for me to go onto injections, it's just taking a bit of time.
Hey Lee
You will need to watch the gap between the shots and have it backed up with so T level tests and keep some gel to top up if you feel you are hitting a low near the end of the cycle.
Cheers
Kiwi :) :)
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