Karl Update

Well, Karl's nausea is being managed but his fatigued has gotten worse. He was falling asleep the other day while working at his laptop- literally hands on keys, excel up and eyes closed. He told me he was "running a query" yeah...right. It's the interferon build up in his system. Only a couple more days and he will be on shots which is a lot nicer to his body. Radiation is going well, no hair falling out yet and not "sun burn".
Chemo still no word on when we start, maybe in two weeks.
He had a CAT scan of his arm today and they will start local radiation to the spot on his arm where the reacurring melanoma happened.
He's complaining that things are starting to taste weird so I am off to Whole Foods for organic fruits and veggies to juice him with this weekend- looks like we are going to switch to that soon as with the start of Chemo he loses his appetite.

Radiation Began Today

well, some delays on the brain radiation. They did a dry run and wanted to re map Karl because things weren't lining up and they didn't want to destroy parts of his brain that didn't need it! He did ok today but a little nausea. The nurses are going to adjust his zofran to make it stronger so he won't feel sick after radiation.

On another note we've given up on the Oncologists being proactive and calling for the clinical trials so ad another item to Celine's to do list. It looks like we are going to have to take the initiative, research and contact for the trails.
Dr. Wyzinski wants to radiation on Karl's arm due to the mass reoccurrence of the melanoma so we won't have to worry about it coming back anymore. No news on his back spots being radiated. Karl will start chemo next week maybe. It all depends on the insurance. He also will have scans in the next 2-3 weeks.

surgery went well

Karl made it through surgery. The big alien lump on his left arm was bad, it made it into his muscle a little bit. Not enough to limit his mobility on his arm but enough to have a nice dent in his skin. It was "huge" as Dr. Beistch commented to me. Soo Karl will be in pain and uncomfortable for a couple of days. The other spots were a piece of cake. Dr. Beistch said on visual only that they all were definitely melanoma but he had them sent for biopsies. Well, at least we have less to deal with now. On other good news, Karl's body is producing white and red blood cells on its own so he hasn't had to suffer through the joint pain of the Nuepogen shots every week. That's a good sign that his body is responding to treatment. He starts radiation on his head tomorrow.

Radiation on Wednesday, More Surgery

We've decided next year not to have March. March seems to be the month of surgeries. After last year's hell -Karl had his lymph node surgery and ended up in bed and hospital for months recovery because his wound wouldn't heal, got infected and he was in constant pain- and now this year's March it seems to be dedicated to surgeries again.
Karl went to the surgeon, Dr. Beitsch, today to have some annoying spots removed.
We love Dr. Beistch because he's an avid pop art collector and has Andy Warhols, Lichtensteins Keith Harring and early The Simpsons cells hanging all around his office-he was also name one of the top surgeons by D Magazine and specializes in cancer tumor removal.
Karl has a clump of 3 tumors on his love handle (smaller than a pea), one on his back below his original site, and then this worry some lump on his arm. The one on his arm is protruding and it looks like an alien under his skin. The weird thing with that location is it's in between one spot that came back melanoma and one that came back benign which he had removed in December. Luckily the arm one is in between his muscle and skin so we won't have to worry about damage to his arm muscles.
Anyways, he goes in on the 21st for a quick one hour surgery to remove those spots. We are pretty sure the biopsies will be melanoma, it's a given.
Radiation starts on Wednesday, not very strong, 5 minutes of radiation and he's done. This will go on for two weeks and then some intense on the sites where his brain metases were. No side effects from the radiation except the permanent hair loss which Karl is looking forward to so he doesn't have to shave his head anymore.

Karl is a little tired this week as his white cell count has dropped so they are dosing him on Nuepagen.

Infusion and therapy

Well, we are on week 2 of interferon infusion. Karl is seeing the surgeon on Monday for some arm scar tissue that is irritating on his arm- no pain just knowing it's there and visually it looks like a lump pushing out of his arm. Oncologist don't think it's more melanoma, it's on the spot where a small spot was taken out benign and they just this there's scar tissue. But we want to take it out to make sure.
Karl will get mapped for brain radiation tomorrow and I think will start either later this week or next week.
So far he's doing really good on the Temedar and Thalidomide with the Interferon. He's just a little tired but has been able to work through the fatigue.
I am counting down the weeks to no antiseizure meds. He can't drive while on them so I am chauffering him every day to and from the center and to doctor's appts. while trying to work and get Anika to and from school at a decent hour. We already are worried the school will charge us more because I have missed some of the 3:30 pick up time.

Karl's Surgery went fine, healing well

What a whirlwind day here in Texas both for weather and the Matthiessens. Karl went in at 10am for the mediport removal and PICC line insertion. The surgery is not too long, about 30 minutes but the op room wasn't ready, the surgery before ran over. So Karl had to wait until 12:30 to go. He said the anesthesiologist was great, he woke up right away when they were done. They had some trouble getting a good vein and Karl didn't leave until 2:30 in the afternoon and I had to run him over to the Oncology center so he could eat, get chemo and get his antibiotics. He has to administer the antibiotics at home every 8 hours through his PICC line. Fun eh? No idea when he will have the trachio-whatever scan of his heart, hopefully next week.
He's feeling good, a little sore in the shoulder blade but otherwise recovering.

Karl's Bacterial Infection-Surgery Tomorrow

Well, this has happened before but not to the extent that Karl had to get his Medi Port removed. His bacterial infection-Staph was from his port and so they are going to take it out immeadiately and he will have a PICC line in his arm. The PICC will be temporary so he doesn't have to delay his treatment. He also has to do IV antibiotics for a couple of weeks via his PICC line at home.(been there, done that). They want to do a tracheal echo cardio to make sure that his heart has not been infectected. Surgery to get the mediport out is quick and not too hard, about 20 minutes in the ER. Hopefully he will get the PICC line out in a couple of months and another mediport back in once he gets over the infections. The interferon infusions are going well, we are changing his time to 2pm so he can sleep through the 12-16hours of side effects. Dr. Wyzinski and Dr. Bierenbaum are working on getting Karl in the vaccine clinical trials at Bethesda or MD Anderson. We will keep bugging them on that matter.

Karl's New Treatment

Well, Karl started his new treatment this week. This morning was the first dose of interferon and he came home shaking and shivering away. Usually manageable with around the clock Tylenol and ibuprofen. He starts orally the Thalidomide and Temedor tomorrow as CVS pharmacy had to order it for us. Radiation in two weeks, he has to heal some more from the brain surgeries.
Karl also has a bacterial infection, I had an early birthday wake up at 4:30am on Sunday when he spiked a 103 fever and had to be rushed to the ER. He was sent home around 10 am with antibiotics as they thought it was viral. We got a call this morning and it's a bacterial infection. The oncologist will add something else to his infusion to take care of it but it would explain while Karl wasn't feeling right all weekend. We have a doctor's appt with his oncologist tomorrow to catch up and find out if we will be going to Bethesda, MD for clinical trials anytime soon.

Karl's New Treatment

Well, Karl started his new treatment this week. This morning was the first dose of interferon and he came home shaking and shivering away. Usually manageable with around the clock Tylenol and ibuprofen. He starts orally the Thalidomide and Temedor tomorrow as CVS pharmacy had to order it for us. Radiation in two weeks, he has to heal some more from the brain surgeries.
Karl also has a bacterial infection, I had an early birthday wake up at 4:30am on Sunday when he spiked a 103 fever and had to be rushed to the ER. He was sent home around 10 am with antibiotics as they thought it was viral. We got a call this morning and it's a bacterial infection. The oncologist will add something else to his infusion to take care of it but it would explain while Karl wasn't feeling right all weekend. We have a doctor's appt with his oncologist tomorrow to catch up and find out if we will be going to Bethesda, MD for clinical trials anytime soon.