AND while I have your attention... Have any other men had low testosterone post treatment. We suspected it and had labs drawn, he has confirmed low T.
If so what were your treatment selections
He's 43. Thx in advance

Hi Lea,

Our household is constantly sick because of the germs from preschool. I just finished disinfecting our house after our daughter had the flu. There is a three day flu going around the kids school right now. I hope Tony starts to build his immune system back up and experience less fatigue. I just noticed he is an inversion 16 as well. Try not to worry.

Julie

Lea, sorry to hear that tony has been catching all these bugs lately. I had one bad one that took a long time to get over but that was it. Maybe consider home schooling your daughter through the pre-school process to give tonys' body time to get back to his new normal. If that is even an option. Has he started his vaccines yet? And ask about a flu shot when you go back. I'm done with the vaccines, and they gave me a flu shot last year. Will probably get one when I go back in a couple of weeks (after 3 months, longest time away). Don't know on the Testosterone, hopefully Cliff will chime in.

Hope you are all doing well otherwise, prayers sent your way.

DaveJ

Yes, Cliff and I have discussed this adnausium, thinking/hoping the colds go along with the TCell depleted transplant territory, but since tony had flu/bu conditioning and not radiation we just also found out that he has been rendered sterile and his testosterone took quite the hit :(
Hoping someone he has experience or insight into this

Hi Lea. I will be 3 years post transplant in less than 3 months. Julie and I joke around that my new nickname is "skinny flypaper Lou" because I never gained back 35 of the 45 pounds I lost and I catch everything that's floating around in the air. The week I came home from the hospital after transplant I caught a cold from my son. He was 24 at the time, well beyond preschool :-). From that point forward I have been susceptible to colds and they also seem to last more than usual, especially the cough. And I don't have small children or relatives and don't spend time around kids so I wouldn't go crazy disinfecting your daughter every day after school.. I think normal hand washing should do.

I just think it goes with the territory. My ANC has been on the low end of normal, at best, since transplant. And I am told those are the white cells that fight infection so that might be an explanation. But no fevers are a good sign, I generally don't get fevers either.

I'm not the same as I was before transplant but it's not that bad either. Our bodies just aren't meant to function with someone else's blood. It's amazing that they are able to. I consider the side effects like my chronic GVHD and getting colds more frequently just minor inconveniences and deal with it. The stem cell transplant is a minor miracle that didn't exist just 50 years ago. If I get sick more frequently it's OK as long as it's normal stuff, I'll be OK. And so will Tony. Good luck.

Lou

Dearest Skinny Fly paper Lou,

So glad you spoke up on your own or I was planning on calling you out. ;-).

Lea,

You are such an amazing wife and mother. Healthier days for your entire family is in my daily prayers.

BTW, I love your new family pic

Blessings
Julie

Lowered resistance is something that you have to live with after chemo -- I was 5 years after chemo last January and had a bug -- bronchitus -- that lasted for three months. Perhaps it was more than one? I went back to my onc just to be safe and my blood was normal for me -- platelets have never returned to the normal range and wbc are low as well. Might be other factors than just blood -- never can tell just what that chemo might have clobbered. But hey -- we are alive!!! so all we can do is to try to avoid the germs and other things (like yelliing at football games) that can open you up to problems. It has to become a way of life. As for the T check closely with your once on anything Tony might plan -- most remedies have an increased cancer potential downside, so I stayed away from them. Take care and good luck with everything -- daveB

The colds that last until the next one are no fun. My NP jokingly said I'd be over it by Aug (in September) just in time for the next round. Mucinex is my friend.

I've only dealt with the female hormone loss, but My reproductive endocrinologist has been a miracle worker. She works with a fair number of transplant and post chemo patients. The specialty works with both male and female patients. (Or regular endocrinologist- urologist might too??) Worth asking for a referal to one with transplant patient experience. If one isn't available with specific transplant/chemo side effects a general one should be able to help with T supplements to help. I know that they have a T patch.

Hi everyone,

I am 4+ years since t-depleted transplant. I don't think that I have gotten more respiratory infections than most, but when I do, I get a horrendous cough. I did have a severe bout of RSV pneumonia in January that put me in the hospital for 6 days (that is an infection that only a 2 year old (or transplant patient) would get and it was no fun. My most recent respiratory bout was about 2 months ago. Although the cold and cough were only for 4 days, I coughed myself into what I know is a spinal nerve compression. As you can imagine, I have been in agony for 2 months (which is why I rarely am on DS despite promises). I took a course of Medrol Dosepak, which was great at high doses, but everything came back midstream. I finally got an MRI last Friday and am awaiting the results. I know I already had a pretty bad looking MRI 10 years ago, and I am praying that the surgical procedure (which is inevitable) will be relatively non-invasive. What we go through!!

I had TBI as part of my treatment, and so I would imagine that I too am sterile. It means little to me, because I have grown children, and am not looking for more. In addition, my wife would have to be renamed Sarah, if she were to be able to conceive.

I agree that Tony's low T can be easily treated by an endocrinologist. It is an annoying side effect of his treatment. I actually did not develop low T after treatment. I won't go into the reasons (has to do with the types of cells in the testes and how radiosensitive they are), but I didn't expect to have that happen.

Obviously, we are all looking at the big picture. Those of us who have had transplants should gradually develop better immune systems, and the side effects of treatment are better than the alternative.

By the way, Lea. When I looked at your latest picture, I nearly exploded!!! What a gorgeous family!!!!!!

Love to you all,

Cliff

Thank you everyone. He still has a lingering morning cough for almost 3+ weeks now. No other respitory issues, however has woken up a few nights/mornings sweaty but that subsided
We got the flu shot Friday but this weekend woke up and took his temp and it was 99, his norm morning temps around 97.7
As you can imagine he is fearing the worst, the beasts return, I'm now more concerned than I was bc of the low grade temp
Why does my head always go to the worst case scenario, how can I get it to stop, it's so unhealthy for us
Cliff, thank you for the compliment on the picture - it was from s vacation this summer

I think we all go to the worst spot in our heads when we aren't feeling well or like we did before we got the transplant. Unfortunately we may never feel like we did before the transplant. When I was so sick I was absolutely certain that I had relapsed, I felt exactly like I did at dx. I was wrong, thank God. I have had a cough (mostly after exercise) for months and after all kinds of tests, they cant find anything wrong. I'm writing it off as part of the process. I know none of this helps ease your fears, I wish I had something that would. I like the "look at the big picture" and the
"the side effects are better than the alternative" already mentioned. Again the voice of reason, Lea. I'm thinking that fever is probably a result of the flu shot.

Please know I pray for you guys, for the best for your family. You all have been through enough.

Thank you everyone. I'm trying to remain calm and positive as our next labs apt is one week away. The cough is a little better, and really hoping/praying the low grade morning temperature spikes were a result of the flu vaccine.
Dave- yes Tony has started his vaccines already, has had quite a few of them. We've considered home schooling but We don't want Izzy to miss out on more than she already has from all the aml crud, she was quarantined for the first 3 years of her life and his dr said its ok. She is now is in ballet and preschool and loves it, she has no siblings (yet) so the social aspect is needed at this stage and we love seeing her happy, not locked up in our house.
Andy said it best in another thread, Just as we try to move forward with life, trying for another child through IVF, Satan has crept in and turned my happy place upside down. Making me question things. I keep reading everyone's replies and they are so insightful & helpful
Bless you guys and keep us in your prayers
Xo

Lea,

Has Tony been taking any cough medicine? Sometimes taking Robitussin DM or even something stronger, like Hycodan (has codeine) at night will help suppress the cough and accelerate its resolution. I have found that with my respiratory infections, doing that helps to shorten the course. There is a cough cycle....the more you cough, the more you cough!

Just a thought.

Cliff

Cliff
I think he takes NyQuil or robutussin before bed. The cough is a little less today but it's mostly first thing in the morning that he hacks a bit to clear it out. Also coughs a little more after running.
No temp yesterday or today so that's good. He's still pretty fatigued
I had an HSG and HSN ultrasound this morning of my uterus to confirm the suspicion of a uterine abnormality -was dx w bicornuate uterus-Just to add one more thing to our plate. The doc isn't going to operate since I did have Izzy already, thinking if it ain't broke don't try to fix it. But if we convince via ivf(frozen sperm) then it'll be high risk again and likelihood of pre-term birth, breech, etc.
At first I was bummed bc if it was just septate than he could fix it but this type of uterus is major surgery to fix. I'm going to look at it like my Uterus has stepped up before and gave us Izzy, so I'm going to trust it again! Not sure he will try to implant more than one embryo bc of the "cramped real estate" in there. We shall see

Oh Lea, how wonderful if you could give Izzy a sibling! May God's plan include that joy for your family. Prayers