Radiation destroyed my husband! :o( (long)

[MichelleZP]

Hi,

My husband was Dx w/stage four NSCLC in April 02 during a bout w/pneumonia and emergency surgery to save his life. He has mets to the brain, lymph nodes, heart sacs, lung's pleura, and adrenal gland. He had radiation therapy in April/May 02 for three weeks to the brain. It worked. He had three rounds of chemo - in August/September 02 he was in a brief remission.

Well in March 03 he had radiation therapy for three weeks to the area next to the voice box. The goal of radiation was to shrink the lymph nodes as they were HUGE - well it shrunk them alright, but my husband lost his voice. We were told that was common and that is would pass within 10 days of completing treatment. It has almost been four months and my poor husband still does NOT HAVE A VOICE!! Also, if my husband attempted to eat or drink even mere water, he would vomit profusely. Well he ended up in the hospital in the beginning of the month and he was in for a week and a half. He had every test known to man performed. They found a blockage in his heart and he takes one aspirin a day for that. They found via a barium swallow that the little flap that closes to protect the airway does NOT close hence his aspirating food/fluid in his lungs so they inserted a feeding tube via his stomach. He is not allowed A THING by mouth - NOTHING. He is thirsty and longing to eat!! He gets Ultracal, water, Boost, and medications in his feeding tube. He is supposed to have 8 cans a day of the Ultracal, but he cannot "stomach" that much - and he tries to listen to the nutritionist and the doctor, but if he goes over 6 cans he vomits profusely. (sigh)

Now, it is bad enough this young 47 year old man has stage FOUR lung cancer - but now, he has NO VOICE and he cannot drink or eat by mouth!!!!!! Now this poor man has no decent quality of life. He has been so strong and fought such a good fight all this time, but he is losing his fight due to depression. If you saw my husband - he looks SO GOOD - he has color, he looks so healthy - he is thin but he is gaining weight! The fact that he cannot use his voice has got him down the most, so I did some research and decided an electronic larynges is the way to go for him as w/this device - at least he will be able to communicate again. He loves to talk to people on the phone and when they come over to visit. He is so down since he has no more than a scratchy whisper when he tries to talk. THEY NEVER TOLD HIM THIS COULD HAPPEN AS A RESULT OF THAT RADIATION THERAPY he had. He never signed a consent form stating the risks either! The risks were never even DISCUSSED W/HIM. Is there anything I can do? I feel for the sake of future patients they have the absolute right to know what MAY happen and know all the facts before making that decision if the radiation therapy is the right choice for them and their situation. Should I call the radiation dept. and suggest this? My husband goes to the Ireland Cancer Center here in good ol' Cleveland, Ohio. Do you know we see commercials for that place DAILY and they just won some sort of major award for their GOOD CARE?????? I am mad as a hornet about this. I told his oncologist this, briefly, via the phone and he said we will discuss it at the next appointment and he told me my husband is being made comfortable so he will have the rest of his life to live content and not suffering - I asked if I need to call hospice - he said no as my husband is on Iressa and is still being TREATED, so no hospice at this time and THANK GOD for that. Now what irks me is the way they speak about my husband to me - they speak about him as if he is half dead!! I am sad as my husband is NOT DYING FROM LUNG CANCER - he is a man LIVING WITH lung cancer. UGGG I get so upset.

Did this happen to anyone here or someone you know?

Has anyone here used the electronic larygenes for speech? Another thing that irks me is this was not even suggested for my husband. How can they just expect him to live w/no communication? Sure we talk to him and he has an erase board but his hand is getting carpel tunnel from all the writing he has done. I had NO IDEA this device existed, it was my best friend who thought of this for us and God Bless her as my husband cannot wait to get this! I just need to call the speech therapy dept. and see where to purchase one and get it ASAP. I called today but they were closed.

I just feel so bad for my husband... (sigh)

Thank You.

Choosing Hope,

[daggiesmom]

Dear Michele,

I liked your sign off the best -you are choosing to HOPE. That is the key. In reading your story, i was truly upset. It sounds to me that you need to get a second opinion PRONTO.There are many treatments available for your husband and it sounds like all of them have not been explored. The Cancer Treatment Centers might be one, or a major university hospital in your area might be another choice. Please try these alternatives. I can only imagine how much suffering you and your husband are going thru. I will pray for you and encourage you to try another medical opinion quickly. Please post again and let us know how you're doing. Everyone here cares alot.

Joanie

[Guest pepperpike]

Dear Michele,

I'm so sorry for what has happened to your husband. No one wants a medical disaster during the most difficult fight of their life. Your words are very well written "I am sad as my husband is NOT DYING FROM LUNG CANCER - he is a man LIVING WITH lung cancer. UGGG I get so upset. I hope that you can find a way to explain that to your medical providers. I will certainly use those words when necessary. I have 2 oncologists: the more experienced one is very positive all the time and very careful of his words, the newer one is the most frank and always willing to explain how hopeless lung cancer is. I keep explaining to him that I am not a statistic and will not be put in a category. He reluctantly gives in to my wishes. Keep up your positive attitude and strength as your husband will need all of it as he goes forward in his fight. My prayers are with you both. Please keep us updated.