T Level is Dropping???

[amorgan74]

Okay, anyone feel free to jump in here, Nick, I know you're out there somewhere. A couple of months after finishing chemo I knew my husband's hormone levels had to be low. He had too many symptoms to not have problems with this. He had his all of the levels checked in Oct. and the test. level was the one that was pretty low, 256 at age 34. Not good. The first six to eight weeks was a struggle to get him to use the Androgel correctly. After enough gentle prodding he finally got the message and started using his gel every day 5mg. He had his four month follow up and I told the doctor I didn't think it was enough and sure enough his level was down to 225 so we have moved the dosage to 7.5 mg. I hope this will improve things for him soon. He says he feels pretty good and he has dropped about ten pounds and doesn't have night sweats hardly ever any more. Our marital relationship is nearly non existent right now and has been that way since the initial I/O. You people that write in about it being a couple of times a week make me very jealous. I hope this gets better for us both because as discouraging as this is to me I cannot imagine how he must feel being 34 and having to deal with all of this after having cancer and going through treatment. Has it taken any one else a while for this to get back to a somewhat normal state? I want to do anything I can to help him but I think the only thing I can do is be supportive. All of this has to do with his body and system and hopefully by working with the doctors he will get this last thing worked out and I will have my buddy and my best friend back. Sorry to rattle on but where else do I go to vent my frustrations with him getting sick, none of you deserve what you've been through and it's hard as a wife to know that it's all out of my control. I know ya'll understand. April

[huckchef]

april, i fully understand all your frustration! it took me several months of trial and error to finally get the right dosage. i was doing bi-weekly injections and switched to the gel about 3 weeks ago......and boy what a difference!!! i do 7.5 dosage and i think i'm somehwere in between that and 5 because i sometimes get jittery feeling. i think it will take a couple of weeks of consistent HRT to start seeing a stable base line for your husband! i am a double ampute so it was really frustrating on these levels with mood swings, weight gain, fatigue... etc...... even my wife can see the difference! it will get better!! just keep doing what your doing and you will both find a happy median !!!!! my deepest thoughts and prayers, brian!!

[nickohs]

Hi April,

How did you find me????

I do read everything, but try to leave the forum to the very responsible guys who are doing such a great job here.

Anyway: Yes, Huckchef is spot on, given fair wind and smooth waters, from a hormone perspective. That is what to shoot for first. Increase the dose slowly see how it goes, then, if things still aren't working after a couple of weeks, test and increase again to 10g. If that ain't working, its time to look into why, because 10g a day is the max dose really.
The fact your husband has perked up is a good sign of course. The tragedy of this whole problem from a relationship point of view is that sex tends to be the last thing to be restored, both in terms of desire and ability.

Now, all this is provided the "other enemy" Estradiol, isn't being produced by the body from the therapy.

In such cases, an improvement upon increasing the dose becomes reversed and you risk going back to square 1.

Like you gals, its our hormones !!!!!

Keep the faith April. Remember it isn't you that has changed and don't be afraid to write me direct if you want.

Once all is well, you can expect quite a bit of empathy and understanding if you are unfortunate enough to suffer from PMS.

best to you both,

Nick

[amorgan74]

Thank You!!!

I will definitely be in touch with you I believe. There are a lot of nice people that I have talked to about this and I have gotten the, Hmmm, I see(s) but unless you are living it or have been there I think they really don't fully understand the impact of this on the relationship. Thank you for your help, I am so glad you are here because it has felt a lot like being the only boat floating in the ocean sometimes.
April

[amorgan74]

Blah, blah, blah

Yes, it's one of my rare negative posts. I guess am entitled to a sucky, yucky, PMSy day too. I just hate when these things sneek up on my like this one did. I don't know what Wesley thinks about the HRT but on my long drive home from work it really hit me hard tonight and it was all I could do to pick myself up off of my floor mat and drag into the house. He has worked nights for four weeks and have found out that they are going to extend it for another two. It's hard to see how the hormone therapy is working when your spouse hasn't been in the same house at night for a month and is so tired from working seven nights a week that when he is home he is sleeping. I knew this was going to take some adjustment around our schedules but this absolutely stinks. Very rarely do I feel so alone as I do right now. I miss the PDA moments of being married and the private ones too. I know, I know, I promise I'll be off of my soapbox by morning but tonight I am tired and had hoped so much things would be different by now with it being close to a year out from surgery. I am sorry ya'll but it has just been one of those nights and I have been his shoulder to lean on for so long now that I forgot I needed one too. I promise tomorrow will be better and I will be my usual cheery self. April

[Scott]

Feel free to unload, April. Some days you just have to let it all out. I hope things get better in the months ahead. Hang in there.

[amorgan74]

Thanks man, I know you guys get the worst end of the stick in whole TC deal and but I didn't realize how much it would affect both of us as one. It's been a whirlwind sometimes. Knowing that I was ranting and raving I tried to post where it seemed like there was the least going on instead of in the treatment thread or the ballroom. I hate being negative but this just all built up and I had to let it go in the only place where I knew others would understand. Scott you, as well as the other Moderators, are a gem. Thanks, April

[Scott]

There's a good reason why the National Action Plan for Cancer Survivorship says, "The term 'cancer survivors' refers to those people who have been diagnosed with cancer and the people in their lives who are affected by the diagnosis, including family members, friends, and caregivers."

[amorgan74]

Update with HRT

Welsey's dosage was increased about 4-6 weeks ago and he seems to physically feel pretty good. I wished I could say this has improved everything but it hasn't. I am trying to find out who/what specialist, doctor ??? what we need to see to go a little further than we are right now. I know from reading about the I/O surgery that there are alot of nerves in the area where his incision is and I am wondering if one was cut that shouldn't have been or if there is scar tissue causing a problem, I just don't know. I know being in our early thirties and being married ten years in the fall we are way too young to have to consider a celibate marriage if we expect to live another 40 - 50 years. I know this bothers him, he says that he feels like an old man but we have no idea what to do now. I am going to mention some things to both doctors ( onco & urolog ) at the next appointment because I think there's a doctor out here that can tell us what's going on and how to make it right. If any body has any suggestions or experience with this following the surgery and chemo I would welcome your comments or advice. Please feel free to send me a private message if it's something that you don't want to air generally, I am hoping someone out here has went through this or something similar and can offer some encouragement. I can also vouch for Nick being a source of invaluable info and helpful sounding board for me. For that I thank him sincerely. April

[huckchef]

i can only send some positive encouragement your way! just keep after it and you'll find the answers you both need! my best wishes and many thoughts and prayers!! brian

[Mom]

The first question my husband's doctor (urologist) asks is "how's your sex life?" So I think you need a heart-to-heart talk with Wesley's urologist. If it isn't hormones should he try Viagra? It's worth a shot. My husband's last test came out as 1800!!! Now you know what I am going through. The doctor was in shock. He is going for another test because the doctor feels it has something to do with when they drew his blood (morning after the gym). He wants him to take the test late in the afternoon. He is only on 5.0/day. He might go down to 2.5/day if he continues to test high. I don't understand it because he has no testicles so he's not getting help from the other one. There has to be some reason for the fluctuation. I don't think the Androgel is doing its job when it comes to Wesley. Dianne

[nickohs]

Dianne,

Readings are often corrupted by drawing blood in the area of the application, soon after gel is applied. I speculate this could be happening.

I too have no testicles and have great difficulty in dealing with a dose as low as 5g. I would certainly resist a reduction in the current dose. Of the fifty or so guys I know with no testicles, none are on less than 5g a day. A few are ok on 5g, about half on 7.5g and the rest on 10g a day. The danger of reducing the dose is that it is likely to ensure ill health down the road.

In Wesley's case, I have advised April that Wesley may still not be on a high enough dose. That he has shown improvement on the higher dose suggests we are heading in the right direction. The awful thing is that sexual desire tends to be the first to go and last to return.

Urologists in the USA tend to be a little more up to speed with TRT than other doctors. This is because there has been a focus on Low T at their conferences.

I hope this helps,

Nick

[amorgan74]

I think so too, it's hard enough to get him to talk to me about this. I don't know how he feels about me going in with him at the urologists office but I know if I don't then Wesley won't ask the difficult questions. The doctor can say it will be okay and a year later nothing has changed and Wesley won't say a word. Nada, not me. I want a time frame and I want to know what plan B and C are. I just don't think it's okay for it to be a year out of surgery, nine months out of chemo and there is no change. I know his incision site is going to be sore for a while yet to come and he's now on the mid dosage of the Androgel but we should see some sort of change I feel like and there's nothing. I am just glad that we've been together long enough to deal with all this and not have to worry about one or the other bailing out because of the whole experience. Sometimes I think he feels bad about himself and I tell him that it's like getting fat, skinny, wrinkled or gray haired, I love him warts and all because nobody's perfect and his heart is still true to who he is and I would expect he would feel the same way if the roles were reversed. I am so glad this big family is out here. Ms. Dianne, Mom, thank you so much, I don't even talk to my own mom this much in depth about all of this. I really appreciate it. April

[nickohs]

Hi April,

OK, I appreciate how this is grinding on you. God knows it is tough to deal with.
But, I am afraid, stuff like this takes time to get over physically first of all. Ignoring the vitally important hormone issue for a moment. Chemo is poison and damages the body significantly. 4xBEP is a particular horror. The Bleomycin affects the lungs, which is why Scuba divers don't get it. Cisplatin can cause Tinnitus (ringing in the ears). I believe Etopiside is the one that can cause Peripheral Neuropathy or Raynaud's Phenomenon. Sometimes the side effects are permanent.

Now then, the one thing I know is that a guy will never feel great and sexy, unless and until his body is in good condition. Recovery from Chemo itself takes about a year, so the improvement in Wesley's demeanour of late is a sign perhaps that things are getting better. The body simply takes that long to replace all the cells damaged by Chemo.

Turning to Testosterone. As I suggested to you earlier, an increased dose may help. It is worth the experiment. However, I would not be at all surprised if Wesley didn't respond, simply because his mind and body are not yet recovered from the shock of Testicular Cancer and Chemo. 4 cycles of BEP is one more than is normal, so Wesley will be coming back from further down the chemo path than most guys.


I am sorry April. I wish I could give you a timescale, but I, nor anyone else can do that.
I know this does nothing for your anxiety and won't help Wesley either. However, sometimes, we can't get what we want when we want it. Life can be that crappy. The lucky ones are open, find the answer, recover well and get on with their lives. Those men who "suffer in silence" tend to take longer to recover and it is more painful for the partner, who is desparately trying to help.

The only way things could speed up, is if Wesley can be persuaded to talk to somebody about how he feels. That will deal with any psychological problems he may be enduring.
He knows how you feel and is probably carrying guilt about the situation. A third party, one Wesley can trust, can often help in those situations.

I hope this helps,

I am available for him by phone if he wants to talk.

Nick

[amorgan74]

Okay Nick, I hear you loud and clear and I am in tears but that's okay. It's a release of emotion so tears are okay. I know I can't make this better right now but it sounds like I can make it easier for both of us by backing off a little on this. I understand everything you've said and it's not easy to sit and watch someone go through this and not try to take some of the burden that you feel like they are carrying. I know you understand what I am saying.

I shouldn't be complaining should I, he's the one whose been through all of this and he's doing well compared to how it could be, every now and then I have to nudge myself and remember the alternatives. "Now" doesn't look so bad when I consider that. Sounds like I gotta let this go and not make it more stressful than it already is. A