Problem after 6th BCG treatment

Hi Everyone!!!! I know it has been awhile since I have posted but my life has been crazy since Greg's 5th BCG treatment. At this moment he is in the hospital with an ileus (intestional blockage) and I was wondering if anyone has ever experienced this after having BCG. Greg did very well until his 5th treatment and then he seemed to feel bad from treatment 5 then he had number 6on a Friday and this past Thursday his regular doctor sent him for an x-ray because he was complaining of abdominal pain and it came back with an ileus and she admitted him immediately. This has been some journey we have been on the last few days. He had to have a tube put through his nose and throat down to his intestines to drain fluid off to relieve pressure, he said it was so horrible, he said a BCG treatment is nothing in comparison to this tube that was inserted down his throat, they kept it in for 24 hours and know he is on liquids for today and starting tomorrow soft food to see if he digests it properly. His urologist does not feel it is related to the BCG treatments, his GI doctor does not really understand why it happened at all, Greg has never had any GI problems ever. We actually thought he might have the swine flu, he just knew something was terribly wrong. To everyone here I just feel so helpless, he has been through so much in the past 3 months, it is almost to much to bear. Has this ever happened to anyone else or do most of you think it is not related? I just left the hospital and he called and asked me to post this and see if any other bladder cancer patients have been through this. Greg did very well during his treatments ,never missed work had them on Friday's and felt pretty good by Sunday except for fatique. He did have urgency issues pretty bad but his Dr. put him on SancturaXR and it really helped . Seeing Greg go through this has been the most difficult thing I have ever faced and I swear he makes me want to be a better person. He has dealt with this with such courage and he gives me the strength to go on, I so admire him. I had a long talk with all his Doctor's and they are definately working together to assure us he won't come home with the same problem. After he eats some more hearty food we will then see how he processes it and take another x-ray, at that point we will see if he may need surgery but everyone seems confident that hopefully he won't need it. He may have to put the biopsy off a few extra weeks but at this point it is all still in the air depending on this GI issue. Can anyone share any experience with me? I know I have said this so many times but I still feel like this is all a terrible dream, I miss my old life, I miss the way our family was, I miss everything and I never realized how very blessed I was. I spent a great deal of time in the hospital chapel today because I really have a feeling of desperation going on inside of me, to be honest I have not really slept good since
Tuesday because Greg was so sick Tues and Wed night by Thursday he was beside his self in pain and in the hospital. When I go to sleep I just keep thinking of him and all he has been through and I get this panic that comes over me. I do have faith that this is just another obstacle to deal with and I just pray the BCG worked and he will be cancer free and just on maintence. His urologist has been in to see him everyday and he feels very confident since he has always been healthy that he will overcome this. If anyone has any advice please share with me I am on this site everyday and it has always gotten me through these difficult times

Soffie

By Moonerj
Posted October 24, 2009 at 10:06 pm
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Hi Soffie
I have had 30 BCG treatments but never a problem like Greg is having. I really can not offer you any experience in this area, only my support for you both.
It sounds like to me that your Docs are on top of the situation, and hopefully this will be behind Greg very soon.
You both will be in my thoughts and prayers,
Jack

By SilverGrizzly
Posted October 24, 2009 at 10:08 pm
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Soffie,
Oh, I am so sorry to hear about what you are going through. I don't have any experience with what has happened to Greg, but you have all my sympathy and prayers for what you have been through.

I so totally understand the feeling that you are living in a terrible dream, and how you just wish you could go back to the way things were. I certainly feel that way so many times. Life is forever changed after this diagnosis for the whole family and desperation is a good word to describe what we go through sometimes.

Please know we are all here for you and are praying for you and Greg and that you both will make it through this even though things seem very bleak right now. God bless you both. -Jan

By Cheyenne
Posted October 24, 2009 at 10:17 pm
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Hey Soffie. Sorry to hear about this. I highly doubt the BCG had anything to do with this directly. It may be pure coincidence. It's hard to know for sure because the stress of BCG can create problems that are not related to the BCG. Very often the stress of having the BCG can result in intestinal issues such as spastic colon, and a bunch of other things. Sometimes the symptoms of the treatments result in loss of appetite, less movement, less fluid intake and all of these can affect the digestive system. I can see where a relationship could exist, but I can't see where the BCG or instillation process would be involved. But nothing can ever be ruled out. I had 8 BCG treatents in a row, not sure where things are going next but I do recall having some intestinal pains now tht I think back, not terrible, but they were uncomfortable. So maybe there is something to this. I'll see what I can find out. His docs are the best ones to figure it out. I have not seen anything in the research that I have read with regard to BCG studies that would be similar to this, but I will did around Lancet and New England Journal of Medicine and some other sources to see if there has been anything like this reported. In the mean time time hang in there and tell Greg I said Hi. Oh, and the NG tube, yes it is horrible. I have gone through this. I have a severly deviated septum too. They finally had to put me out to do it. And if I have to have one in the future, I won;t do it without being out. I'm sorry this has been so hard on you and Greg. You are a faithful and loving wife, you have a courageous husband.

By Cheyenne
Posted October 24, 2009 at 10:39 pm
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Jack does have of a of making sure we remember it. And he's right. He has helped me a great deal. Without him beating on me for two months I would never have had the BCG. I am awfully glad I did. So Jack, thanks for brow beating me into it, you were right.

By soffie
Posted October 24, 2009 at 10:49 pm
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You have all helped me more than you will ever know. I may not post everyday but I am on this website everyday and I could not have made it through without all of the wonderful people on here. People that have not experienced bladder cancer cannot possibly understand the patient's feelings or the caregiver's feelings, I really am so grateful for everyone here

By Cheyenne
Posted October 24, 2009 at 10:53 pm
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We always like hearing from you Soffie and we care a lot about you and Greg, so keep us informed as to how things go. And you're right, unless one has experienced BC or is a caregiver to a person with BC, they have no idea of what is is like.

By lsh
Posted October 25, 2009 at 8:12 am
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Soffie,

I have had 12 BCG treatments and never had the problem you describe. Unless Greg has diverticulitis that would stop his eating fiber, it might be a good idea to make sure he gets enough of it or add a couple metamucil tablets a day to his regime. I'm glad they seem to have him fixed for now though.

As to how you are feeling---I have been there. My husband was literally at death's door for months during the bone marrow transplant 8 and a half years ago. It was bar none the hardest thing I ever had to do to put on my game face everyday and be there to do the things that needed to be done to help him survive. It was bar none the hardest thing he has ever had to do also. Today we thank God for giving us the strength to do what we did back then. He is here enjoying life doing almost all of the things he ever did. Prayer got us through it. The Lord carried us through it in the palm of His hand. He will be there for you also. You are stronger than you think.

Please keep us posted on Greg's recovery.

Lynda

By Jemuna
Posted October 25, 2009 at 9:17 am
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Soffie--so very sorry to hear your husband is going through such a hard time right now. You sound like a strong lady but I understand that being the cheerleader everyday can be very tiring. I pray that his healing is quick! How is your son handling all of this? I believe you said he is 17-as is my boy. Have you come across a site like this for teens? I feel like they are the age group that gets left out at times like this. (My husband had tissue biopsies taken a couple of weeks ago. We will find out results on the 26th. This scares me so as he had his r.c. back in March and I thought we would be free and clear of this nightmare for a while.) I hope things are better today and remember to take care of yourself. Jane

By SilverGrizzly
Posted October 25, 2009 at 9:45 am
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Soffe,
I hope so much that things show improvement for Greg today. You are so right--he and you have been through ENOUGH. And yet it still seems to keep on coming. That has been my experience, exactly, with Bladder Cancer. It seems to never end, which makes it so hard.

I am constantly amazed at how much harder this cancer is to deal with than the breast cancer I went through a year ago. (Of course, I did not have the metastatic kind, which would be enormously difficult I realize.)

Hang in there. You have all our support whenever you need it. Please continue to post and share what is going on and vent any of the feelings you have about it. We will understand and keep praying for you. -Jan

By soffie
Posted October 25, 2009 at 10:02 am
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I again want to thank everyone so much for your support. I am again on my way to the hospital and I feel so drained. I find that this cancer is taking away my world because Greg was always so full of life. Even through this he still shows the same determination for his life. I felt so helpless this morning I am the praise and worship leader for my church and the phone calls I got for missing church really has weighed heavily on me. I got so upset because Greg is a engineer and he runs our soundboard and people were upset because we were not going to be there. I simply could not believe it, so again I started crying pulled myself together and off I go to the hospital. Jermuda I agree with you about teens and cancer I know it is hard for them not a lot of info. out there for them. What my son does is he goes to a youth group for teens and they talk about all kinds of things in there. One thing about teens is we can't overlook their feelings because they may look like adults but they are not. It is a constant balancing act for me between Greg and my son Dustin. In some wierd way I feel like we are closer than ever because Dustin has a wonderful role model in greg

By SilverGrizzly
Posted October 25, 2009 at 12:00 pm
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Soffie,
Please just ignore the people from your church who don't know what they are doing when they make you feel bad for not being at church. Why would they expect you to be there when Greg is in the hospital for heavens sake?

The only answer is, I guess, that no one really understands what we are going through in facing this disease but those of us who have been through it or watched someone else go through it.

Your first priority right now has to be your family, and that is the end of the story. It may be that way for some time to come. Be kind to yourself! -Jan

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