Need advice treatment..Please help (sort of long story)

[Trish]

New, Need TREATMENT ADVICE.Please help

Hi, I'm new here, F/early 50's.. Found out I had Crohns a few months ago, but MRI detected a kidney issue that has turned out to be a very slow growing type of kidney cancer. (just found this out a few days ago)..Decision has been made to watch and wait on removing the cancer, since it is an area where the whole kidney will be destroyed and the other kidney has some problems.
MEANWHILE..My crohns doctor says I need to start an immune suppressant medication because the crohns is severe and I have lost a lot of weight and can't eat much at all. This has all happened in 3 months. I feel like I'm going crazy with all the stress of all of this so suddenly.
The kidney doctor says if the GI feels I need the immune suppressants he will not object. I've been so sick the last few months with one infection after another of different types and my white blood cell count is always high.
SO..(sorry so long) I don't know what to do..I'm really scared of the immune suppressant drugs with the cancer and history of infections, but I can eat very little and am having very little quality of life. The gastro doctor is waiting for me to come back in with my decision in the next few weeks. This gastro doctor is the 2nd one I've seen, they both agree, but I'm not sure I do..
ANY help would be SO appreciated.

 

[Trysha]

Hi Trish,
Welcome to the forum.
This is quite a predicament for you to have sprung upon you and there can be no clear answer. Talk about a rock and a hard place!
If the kidney tumor is slow growing, it may be that there is a time span where you can have the crohns treatment while both the oncologists and GI people keep a watchful eye on you.
Its a real catch 22 situation.
But firstly since the crohns is so impossibly active it will need something to bring it under control.
This is where you will have to trust your doctors.
Have the oncology doctors given you any indication regarding cancer treatment?
If they give the OK for the crohns treatment I would think they know what they are doing., and will keep a watchful eye on you during this time.
I don't blame you for being scared, it is a lot to take in.
If you want to feel better it looks as if you will need the treatment for crohns first.
Feel better soon
Hugs and best wishes
Trysha

 

[Crohnswife]

Sorry to hear this. I agree with the above post, you will need something to make the crohns better. I understand your fear of the cancer. I think this is where you decide if you like and trust your doctors. If you do ask what they would do, what needs to be treated first, and do not waste anymore time. Crohnss will not get better on its own and only worse. If you trust the doctors go with what they said. If you are not sure you trust them, get another opinion. Good luck

 

[Jennifer]

Talk to your GI about other treatments that may help as well such as Enteral nutrition as it can help give you the nutrients you need since you're having a hard time eating. What I do know is that your body needs to be strong to fight cancer even with chemo so it does make sense to get the flare under control so you can beef up your strength to prepare you for the next fight. Its up to you and your doctors.

 

[Trish]

Thank you to each of you for taking your time to reply. Unfortunately, this type of renal cancer does not respond to either chemo or radiation treatment. The only option is removal of the cancer and the doctor wants to wait and watch since he can not get to it without destroying the whole kidney.

I am just very concerned about having my whole immune system shut down to help the crohns. I need to learn more and hopefully talk to some of you who have or are on that type therapy for crohns. The doctors say it's a risk either way I go and that I have to decide, but GI doc seems to think immune suppression is the way to go.

I'm basically learning about crohns and the best treatments and trying to make the best decisions for the complex situation that I'm in. I will post more about me and hopefully get to know you guys more, but am going to get some rest now

Again, thank you guys ALL so much for taking the time to try to help and I'm looking forward to getting to know all of you.. You all seem very kind.