Stopping Steroid

Jackie says he has felt better today. He would not let me call the doctor, and he says he is not going to take the steroid tonight. Hopefully, everything will be alright. He thinks I over react to everything. That may be true! I'm really trying not to, but I just don't trust him to tell me when something is wrong. I know he is trying to protect me and doesn't want me to worry, but I just don't want him to be in pain.

Lower Back Pain

Jackie just told me his lower back is hurting. He tried to make light of it - said it was probably from a fall he took last week. I rubbed it and gave him some Aleve and tucked him in. I'm so afraid it's the tumor on his adrenal gland. Dr. Tran, the radiology oncologist, was surprised that he wasn't already having pain from it when it was discovered, due to the size of the tumor. He told us that day that if it started bothering him, to let him know and he could do something about it. I feel sure he will do some radiation on it. For sure they will up the steroid back to at least one pill - seems these problems have just started since we went down to 1/2 pill early in the week. I'm going to look on the internet for more information about tumors on the adrenal gland now.

Headaches Again

Jackie slept a lot yesterday. The weather was rainy, and he has always liked to sleep when it's raining. I didn't think much about it - just wondered if he would be able to sleep come night. We ended up having a movie marathon. Called it quits sometime after midnight. He was pretty lethargic again this morning. I have to drag everything out of him. It worries me that he doesn't want to tell me when he's having any kind of problem. He finally told me his head was hurting some in the mornings. We just cut the steroid back to 1/2 on Monday and were supposed to stop it completely tomorrow morning. Don't think we're going to do that! I'll try to get through to the doctor in the morning and let him know what is happening.

Side Effects of Treatment

As far as side effects of the planned treatment, we really won't know until we get into it. However, from our research and talks with the doctor, Jackie will most likely have nausea, vomiting, and weakness. There is a possibility of peripheral neuropathy from the thalidomide - nerve damage in the hands and feet. He will have to be closely monitored for this. If such occurs the drug may have to be reduced or temporarily discontinued. So far he is doing great as far as pain is concerned. Hopefully, that will not change. If he does experience pain from the tumors, we have faith in the radiology oncologist to take care of that.

Treatment Decision

It seems we have finally come to a conclusion on the direction to go with Jackie's treatment. We met with his medical oncologist in Texarkana today. He had finally spoken with the doctors in Houston, and it was decided that they really don't have anything good to offer him at this time. However, Dr. Patel is going to use one of their medications in addition to the one he was planning to use. They are both quite expensive, it seems, and they are working to get the best price possible. Also, one (Thalidomide) requires considerable paperwork. It interferes with the blood supply of the tumors, and the other one (Temodar) is an oral chemotherapy that tends to poison the cells, as I understand it. Therefore, it appears we won't get started for yet another couple of weeks.

Jackie is happy with the decision. The doctor said that he was looking good, and he is still feeling quite well. He is continuing to eat like a horse, but we have cut the steroid back to 1/2 pill, so his appetite may dwindle somewhat. We are supposed to quit cold turkey next Monday, but get back on one a day if problems arise.

He sends his greetings and thanks all of you for your prayers, cards, and interest in his well-being.

What's Next with Jackie

We didn't find out anything from the doctor on Thursday - communication problems I guess. We thought he would have information for us from MD Anderson. Dr. Patel said they were to call us. I called them yesterday morning and then called Dr. Patel's office with a number that he was to call. We did not hear from him yesterday, so I'll be calling him first thing Monday morning.

The nurse that I talked to gave me considerable information about the clinical trial that Jackie evidently qualifies for. Also, I found it on MD Anderson's website based on the three meds that she said were being used. The first one is the chemo that the doctor in Texarkana plans to use. The trial is to determine if these two additional meds will help the chemo be more effective on metastacized brain tumors from melanoma. The big problem is that metastacized melanoma is extremely difficult to treat. Of course, as the brain tumors are treated systemically, the tumors in his lungs and the one on his adrenal gland will also be treated.

Dr. Patel told us on Thursday if it is going to be six weeks or so before we can get started on something in Houston that we may need to go ahead and do the treatment here. If we start the chemo here then he will not be eligible for the clinical trial. The trial requires that his radiation treatment on the brain tumors be completed four weeks prior to the start of Houston's treatment and, as I understand, that they be actively growing again. He will have been finished for one week on Tuesday. From reading on the internet it seems that we would go to Houston every two weeks for eight weeks and then just every four or five weeks after that.

I have no idea what we will do; but, hopefully, we'll make a decision early next week.

Jackie is still feeling reasonably well under the circumstances and is in good spirits.

Doctor Visit 3/20/08

We went for our appointment today expecting to find out what our next step was as far as treatment was concerned. All we found out was that MD Anderson is supposed to call us - not the doctor. Therefore, we will be calling there tomorrow morning first thing. The medical oncologist (Dr. Patel) thought Jackie was looking good. He feels, however, that if MD Anderson can't get us in for six weeks or so that we may need to go ahead and start the chemo here. Jackie completely trusts him to do what is best. He is feeling good, just a little weak and/or shakey at times. He is still eating heartily and resting often.

We enjoyed a visit from my daughter and two young grandchildren for the past three days. Thanks to Jana we finally got this blog started. Jackie's nephew and his family from New York are coming by tomorrow. Needless to say, we are looking forward to that!

Hopefully, we will have some info to pass along by tomorrow.

Diagnosis to now

As most of you know, we discovered a little over a month ago, February 9th, in the emergency room at Mt. Pleasant that Jackie had tumors in his brain and that they had come from someplace else. He was put on steroids the Monday after we received this traumatic news on Saturday. Then on the following Friday, February 15th, radiation was begun on his brain. We later found that they were in his lung and that he had a large one on the adrenal gland. He had a needle biopsy in his lung February 29th, and his lung collapsed. They admitted us to the hospital and told us the hole should close up in a day or two - instead it took eight days. We finally got back home Saturday, March 8th. We had received the results of the biopsy Wednesday the 5th - amelanotic melanoma.

The doctor said we have two options which are oral medication (chemo) or a clinical trial someplace like M.D. Anderson. All the records have been sent there, and we are waiting to find out if they have anything going on at this time with melanoma. In the meantime he has completed a course of radiation on his brain. We have an appointment on Thursday, March 20th with the medical oncologist to determine the next course of treatment.

Jackie is feeling good - just a little weak. He is not in pain, thanks to steroids and the radiation. He is fortunate to have so many relatives and friends who are concerned about him, and my daughter suggested the idea of the blog and has graciously agreed to put it into action. We'll try our best to update the information regularly, and he will surely enjoy the input from you. She has purchased him a laptop so that if we are away from home, he'll still have access to his computer.

Thank you all so much for your prayers and care and concern! It means so much to both of us and certainly lifts our spirits during this trying time.