radiation complications

Aimeth,
I agree your husband is getting a powerful combination of treatments with both the radiation and chemo at the same time and that is brutal to recover from, they will need to keep a constant eye his blood chemistry. As you've probably been told keep him protected from people with colds and flus this winter season, he won't have much strength to fight off viruses.

From my experience the oncologist for a 1/2 day meeting was very up front with us on our first visit to the chemo center. Explained the drugs used, procedures, etc, and a very frank discussion about the prognosis - it was a very difficult discussion made worse at the time because my father was in complete denial about the terminal nature of the disease. He has used the time very well, was able to tolerate the drugs well and even had up to 9 months break before treatments resumed. But there does come a point were they are no longer effective, the drugs were changed to something else, but the dilemma for BC chemo is no good second line yet as explained by the oncologist.

As you mentioned they will check if he can take more treatments and I hope he is healthy enough to tolerate additional treatments, gotta keep after this beast. I sometimes get the impression the additional treatments are delivered as an option but my impression from my dad is to go after as much as possible.

My hope to you both for strength.

Charlie

Dear Karen and Charlie,

I thank you both for taking the time to answer my post and share your experiences even with all that you are both going through.

Kevin, my husband is schedule for 12 more treatments and if he can bare more they will give him maybe two more weeks. But I can see that his bladder is really affected by the radiation so I really don't know if they will be able to give him more. We are trying to make an appointment with his urologist to see what he thinks.

As you said, Karen, "at this point any treatments benefits Must out weight the risks. So he is willing to do what it takes. The other thing is I believe that they are treating at this point palliative. But no, his doctors have not been really straight forward with us. They did tell us there is no cure but they have not really sat down and gotten everything out of the open. I did have a conversation with his oncologist a few months back and she did say to me that the prognosis is not good, but there is that hope that maybe something will work.

But I believe that they seem to think he is better of believing and having hope. On the other hand it frustrates me a lot because to me it is important to know whats ahead. Him on the other hand, does not want to know. It is a little complicated, don't you think so? And crazy at the same time.

Anyways my thoughts are with you too and everyone on this site. We will be staying home with a few close friends and relaxing these new years eve. I hope you all have a good one close to your love ones as well. Take care Aimeth

Aimeth,

How many radiation treatments has he had? Is the radiation directed right at the tumor you are speaking of? Radiation is more of an exact science, it actually kills the cancer, unlike chemo which in my opinion is where they "try" to kill the cancer. Unfortunately for us the whole body cannot be radiated (I asked already, they only do that when someone is going to get a bone marrow transplant, and so they radiate to kill all of their own marrow) The time frame and dosages for radiation is limited. It sounds like your doctor/oncologist/radiation oncologist is/are taking a very aggressive route with your husband. Which is good in the fact that he must think your husband can handle it, but if you both don't think he can, then you need to talk to the doctors. At this point any treatments benefits MUST out weigh the risks. Chemo really knocks you out alone, but adding the radiation to it...that is powerful, and your husband would no be human if it didnt effect him. Is the Chemo and Radiation at this point palliative? If that is the case you and your husband can start deciding what treatments are of the best help to you...when the cancer metastasizes, you really are looking at quality of life issues...has the doctor explained any of that to you? I think that very frank discussions are in order between you and the doctors involved...have everyone take off the kid gloves and get everything out in the open...

I am thinking about you and you are not alone...I am going through the same things...it is frustrating, complicated, exhausting...and I know that you and I would both love a few hours or a day without a cancer related issue! When I say "I know" or you say to me "I know" we actually do "Know". Unlike talking to friends or relatives who mean well but just don't "Know" what it is like.

Karen

It can take time for those treatments to work..experience with my dad both with radiation (for prostate cancer) and chemo was 6 weeks or more for results. It is the nature of the tumors to grow the chemo shouldn't be helping that growth, just may not be effective. My past experience is leary of radiation it can cause direct damage to surrounding tissue which will heal but can leave behind scar tissue. My father had high dose radiation and it caused the bladder to fuse to intestine - years later it took a lot of careful cutting and patch repair work by the surgeon to remove the bladder due to the later develpment of bladder cancer - much like your concern with the chemo I often wonder if that broad beam radiation didn't have something to do with a later development of bladder cancer after treating a removed prostate. We never got to learn about bladder options, his was removed and the kidneys routed to a stoma. That solution actually worked out really well for my dad and he didn't give it a bother. Unfortunately a month after that surgery the tumors appeared and we were told by the oncologist that absolutely there would be no attempt to surgically remove the tumors that they would just be chasing them all over the body. Better to treat with chemo for as long as can be tolerated or effective. He apparently already reached a lifetime maximum for radiation so that was never visited again as a treatment option, so the chemo alone was it for us.

Well it has been two weeks since my husband started radiation and we already have complications. He has a neobladder and he has a tumor outside the bladder. He has had some occasional bleeding and blood clogs but he was able to pass it with no complications. Now with the radiation/chemo (he is getting a mild dose of cisplatin) he is having major problems with this. He gets backed up and can't urinate, it can be very painful, so we have to go to the emergency room and get a catheter. His doctor showed him how to self catheterized himself but he is not too confident doing it and it not always works for him. His blood counts have been really low as well so he had to get a transfusion yesterday. Also the tumor pain on his back has not gotten any better and he is still taking lots of pain meds. We have had a ride with the chemo so I was under the impression that radiation would be much easier. But it seems to be as bad. Maybe is just my husband's body, maybe he just can't take anymore. Needless to say he is physically and mentally deteriorating. He is also scared because once the radiation is over he believes he will have surgery to remove the tumor and possibly his neobadder. His surgeon has not been to forward with that. The surgeon says that the tumor needs to get smaller so he can save his bladder but I am not sure if that is really the case. Can a tumor get larger while radiation? It did with the chemo. This is really crazy!

I wanted to wish everyone a Happy New Year in the company of your love ones and hope for a better and healthier new Year. Aimeth