Tolerating Chemo Better This Week

I finally have info to relay to you all after not talking to Terry for several days. I've been wondering how Steve's been doing since he restarted chemo on Friday. If you remember, Steve originally started his first chemo pill on a Sunday night. He took three doses before the nausea and vomiting had him stopping for two days for his body to adjust to it. Then he began again Friday and has taken it daily for the last five days. He is now handling chemotherapy better and has had no vomiting. The nausea is controlled with Zofran pills three times a day. He also is taking Benedryl to help dry up the excessive saliva that has plagued him and Maalox to help coat his stomach. He tried Prilosec but didn't have good success with it settling his stomach so he is trying the Maalox instead.

He is eating better than last week. Terry reports he is tolerating three small meals a day. She says his serving sizes are much smaller than they used to be, but he eats things like yogurt, salads, muffins and chicken pot pie and Chinese food one night. His weight is down 34 pounds from when this started so his family doctor just eliminated his Glipizide, diabetes pills. They were checking his blood sugar three times a day for a week or so while trying to determine his best treatment plan. Steve still takes Actos once a day and checks his blood sugar level once a day and they will continue to watch for changes as his diet and weight fluctuates.

He reports being pretty tired from all of this chemo and radiation. He takes a nap in the afternoon and is now sleeping through the night, usually 9 pm to around 5 am, without any sleeping pills needed. He tries to walk on the treadmill but has only been on it every other day this week.

Terry says the radiation is starting to cause redness on the skin, like a sunburn. This was expected. They were also told he may lose his hair but it hasn't happened yet. Mostly we make jokes about our favorite bald headed men, except I only know ones from the olden days and Terry had to educate me on who is currently fashionably bald (a Billy somebody from Smashing Pumpkins... how do you know these things?).

I'm glad it's going better this week. Terry says they are often changing Steve's medications and she is frequently updating his drug list (she has to show it at doctor's visits) and they are just taking it one symptom at a time, one day at a time. They are keeping a quiet lifestyle for now and not venturing out much. They are skipping a family event in the Bay Area in two weeks which is a good plan, I think. It wouldn't do to get overtired. We don't want any complications. Steve loves hearing from his friends. A quick card or e-mail is always welcome.

Similar but Different

This morning's news featured the death of Gary Carter, famous baseball player and Hall of Famer from brain cancer at age 57. I checked a few sites and it looks like he and Steve both had glioblastoma multiforme,  grade 4, but Gary's was inoperable for some reason. I don't know why. Apparently they tried treatment to shrink the tumor.  New tumors formed, one site said he had four. He lived about nine months after his diagnosis.

I think it's safe to say that Steve's prognosis is very different from Gary Carter's because of the success Steve had with surgery. Our sympathy to the Carter family.

Another Day Off Chemo

This morning Steve's blood sugar level was low at 60 because he didn't eat last night. Terry withhild Steve's diabetes pill and then she called their internist. He is having Steve take one pill instead of two as an overall change plus taking more frequent fingersticks and adjusting his two diabetes medications based on those levels.

Dr. Hu is giving Steve another day off from his chemo pill in order to help control the nausea. Apparently missing two doses isn't a big deal. Dr. Hu reassured Terry it happens all the time as they adjust doses to the patient's tolerance. It certainly helped today as Steve felt well enough to eat three small meals (is half a chicken sandwich a meal? That's not very much food.) and kept them all down. Terry said he has been really tired though and he took a nap which is unusual for him. Steve thinks the radiation might be contributing to the nausea also so he is planning on taking his Zofran regularly twice a day, before radiation and later before the chemo pill. He's allowed to take it a third time if needed.

Happily, Steve got to visit with his long time best buddy, Jeff who is visiting from back east this week and cheered them up. I bet it was a welcome distraction.

Chemo: Not Going As Smoothly As We Hoped

Temodar is the chemotherapy drug of choice for brain tumors and is generally well tolerated compared to some other chemotherapy drugs. It's biggest side effect is nausea and vomiting with only 4% of people experiencing severe symptoms. Steve is on a relatively high dose of it at 180 mg based on his height and weight. He takes an anti-nausea pill before the Temodar. Terry said the first days went well with no side effects..... until after his second dose. Tuesday, Valentine's Day, when I talked to them at 7:00 PM, Steve had been nauseated most of the day and had only eaten a yogurt and an english muffin all day. He was also generating an excess amount of saliva which probably contributed to his upset stomach. He felt more tired than before and didn't exercise that day. He also is dealing with constipation problems thanks to the drugs. The Colace pill he takes every day isn't doing the trick just yet.

Today, Wednesday, Steve threw up in the afternoon, unfortunately just after walking on the treadmill (it can't be good for your motivation if vomiting is associated with exercise). Today he ate cereal for breakfast and a yogurt for lunch. Terry went to the store to buy some goodies to try to entice Steve to eat more, but he wasn't up to it yet. They called Dr. Hu today and he said to skip tonight's chemotherapy dose and to increase the Zofran, anti-nausea pill, up to three times a day as needed. He also is having Steve take Miralax for his constipation. He said Steve's system was reacting quickly to the Temodar. They are not scheduled to see Dr. Hu until March second.

I hope this passes quickly and Steve's system gets used to the new drug regime without any further nausea. It's so unpleasant to be nauseated, and then you don't eat, and then you don't have any energy. And then your body doesn't get enough fuel to keep working well to build antibodies to fight germs like pneumonia bacteria and tumor cells which might try to grow. Everybody send out your good vibes, prayers and wishes to help eliminate nausea.

Steve said the radiation is quite easy. He goes in to the clinic Monday through Friday around 10:30 or 10:45 in the morning and lies down on a table. The technician places the form fitted, hard mesh mask with solid eyes, nose and mouth parts over his face and fastens it to the table. Steve closes his eyes and relaxes. He hears a low noise as the machine moves from left to right, then top to bottom. It seems bright through his closed eyes. He doesn't feel anything. Then he is done in about seven or eight minutes. They unfasten the mask and he leaves.

If only the chemo was so easy.

Chemotherapy and Radiation Begins

Last night was Steve's first chemotherapy pill. He was supposed to take an anti-nausea pill, called Zofran, followed a half an hour later with 180 mg of Temodar. Then he goes to bed to sleep through any nausea which might occur. If I remember correctly from Terry, he also takes Colace and is supposed to eat a high fiber diet to help with any constipation from the pills, but let's not go into that unless it becomes a nuisance. 


Then today he went to the radiation clinic at the hospital for his first radiation treatment. I want to hear more details about it, but didn't get to talk to Terry about it yet. She did send this message to most of you: Hi all...Steve’s first chemo & radiation went well, no reaction....Hopefully the next six weeks will go this smoothly...Will update once a week....Our love to you all, and many thanks . Terry

I'll post some details as soon as I get them. At least we know what Steve is doing for the next six weeks and that he is staying out of trouble and off the streets at night.

Happy Birthday, Steve

Just over a week ago we went down to see Steve and Terry and to help celebrate Steve's Fiftieth Birthday!!! Whoo hoo! You old fart......  We had a great time and I got to see Steve in person for the first time since Christmas. I don't know how my baby brother got to be so old though....

Steve was looking good overall even though he had only been home a week from his hospital stay. He did tire easily and he rested occasionally which helped. I got to see his scar for the first time from the January 4th surgery. It's on the left side of his head and looks like a boring version of Harry Potter's lightening bolt, just straighter and not so snazzy.  It starts in front of his ear (where sideburns would be if he had them) about an inch and a half. Then it makes a right angle and goes across the top of his ear another inch and a half before making another right angle and moving up the side of his head for about two and a half inches. The whole thing is very neat and mostly hidden in his hair. When the scar shrinks in front of his ear, it will hardly be noticeable, I think. There is no dent or dimple from going through the skull either.  Not bad for such a big surgery.

Most of Steve's weight loss is in his legs. He was Mister Baggy Pants. He walked on his treadmill and is trying to build up some strength, but it hasn't happened yet. He walked fifteen minutes the morning of his party.

I'm pleased that Steve doesn't have apparent cognitive problems. Over the whole weekend I didn't really notice word finding problems although I heard he had a couple of missed words when talking to other folks. He is still capable of working and analyzing things and should be able to work again, once he has enough energy to make it through the whole day and after chemotherapy and radiation.

Terry had a party at their home with about twenty to twenty five friends and family. We had good Italian food and Gelato!! for dessert. He got some good presents, too, including photos from when he was young and cute. Steve has always been an early-to-bed and early-to-rise guy and with his higher level of fatigue he excused himself around 9:30 to go to bed. The rest of us closed up the party shortly thereafter. Fortunately for me, when he awoke the next morning he had enough ummph to make us pancakes. Thanks, Steve!