Second Chemo Done

Hi All -
After two wonderful, relaxing, recuperative weeks in San Diego, Rick and I are back to reality. Rick had his second infusion of chemotherapy on Thursday. Instead of Cisplatin, Dr. Garland ordered Alimpta (same as last time) and Carboplatin. She said that carboplatin is a "cousin" of cisplatin - just as effective and less toxic. The total infusion process took about 2 hours instead of the over 4 hours it took to infuse the alimpta and cisplatin. The information on carboplatin also says he will only feel nauseous for about 2 days. Today is day two and he is still feeling pretty nasty. Tomorrow will be better.
Sue

Good-bye radiation!

Rick has just had his last radiation treatment and this is one ending that we won't mourn a bit. It has been a tough 5 weeks. He has been tired, like everyone who has undergone radiation, but because of the area they are hitting he has also been very nauseous. He has two kinds of nausea pills, Tricia and Mike brought Coca Tea from Bolivia, and friends have delivered other homeopathic cures. Everything helped - most of all the support of family and friends.

We are sad to miss Lori and Brian's wedding tomorrow, but Rick is not strong enough to travel right now. His friend Steve Maynard adjusted his visit to Tucson and is here with us now - so Rick has had a truly wonderful distraction from the side effects of radiation. We will take a week to recover, visit the oncologist, and then spend two weeks in San Diego. Cindy and John will visit there. Then back to Tucson to start chemotherapy again. Three rounds of chemo - each three weeks apart - and then life goes on. It's important to cherish every moment, but we are looking forward to cooling autumn breezes and an end to the chemical warfare against the mesothelioma.

7 radiation treatments down, 18 to go

Hi All -
Rick has a radiation treatment every night at 6:30 - although often they run late. We get home at 7:30 and Rick eats a small dinner and then goes to bed. What a nightlife! The treatment is 12 minutes of radiation and takes about 20-25 minutes all together. Most of the people Rick talked to about radiation said that he would be very tired but otherwise ok. In Rick's particular situation, they are radiating the lung area and hit the stomach area (spleen and kidney too) for a long time and he has been very nauseous. He is taking medication to try to control that side effect. His Tucson surgeon, Jonathan Daniel, said by the end the radiation may also affect his esophagus and make it difficult to swallow. All unpleasant stuff - but as we all know, getting old isn't for wimps...add cancer treatment to that and you are really in a deep vat of nothing good. Rick keeps trying to find that Zen place that will carry him through the next few weeks of radiation and then the chemotherapy. I know he will travel this path in good mental balance - he's remarkable in his ability to do that. It's interesting how many people we talk with who have walked similar paths - cancer, surgery, radiation, chemotherapy. Then, life went on. It's a great vision and we cling to every successful story.

For those of you who are computer savvy - there was a tv show on last night called Boston Medical on ABC at 9:00 Tucson time. It's a reality show with multiple stories and one of them featured Rick's Boston surgeon, David Sugarbaker, and his Tucson surgeon, Jonathan Daniel (When JD was in Boston studying with Sugarbaker). If you go to the website you can watch a brief bit about a man with mesothelioma.

That's all for now. It's significantly hot here in Tucson. Significantly.

Radiation FINALLY

Hi All -
Rick was a trooper through his first round of chemotherapy. The first few days were fairly easy, but from about day 4 through 8 he felt exhausted, nauseous, and another feeling of general YUCH that he said he couldn't really describe. So much skin fell off of him that one morning it looked like it had snowed on our bedroom floor. (Too much detail?)

During that same time, the dermatologist removed a squamous cell carconoma from his arm. He was so sick from the chemo, that he had to lay down while they removed the growth from his arm. On the positive side, he was oblivious to what the doctor was doing. He said that compared to all the other pokes and prods he has had, the arm surgery was nothing.

Rick was supposed to start radiation on June 21, Monday. Dr. Chi was on vacation last week and he did not like some component of the radiation plan that had been developed - so when he got back on Monday, they had to rework the plan. We were anxious about the delay because the radiation is scheduled to run for 25 working days and based on the original plan, Rick would have been finished in time to go to Lori and Brian's wedding in Philadelphia. The radiology office was very aware of the wedding schedule and managed to get the new plan finished today (Wednesday) and we are supposed to get a call this afternoon telling us what time radiation will be tomorrow. So again, we wait - but with the hope that it may all work out after all.

Chemo - another interesting thing to learn about

Hi All -
Rick is feeling well and continues to be stronger every day. He still marvels at how weak he is, but every single day he is better than the day before (mostly). We took a chemo class on Wednesday and learned that for 48 hours after the infusion of the chemo, his body fluids are toxic and that he is even supposed to wipe off the toilet seat after using it to prevent someone else from absorbing the chemicals!

On Thursday, we went to the Cancer Center - which is a very cheerful place that has been arranged to make the patients as comfortable and supported as possible. Rick was taking a steroid and anti-nausea medication before the chemo was started and would continue those drugs for two more days. The nurse infused the Alimta first, which took about 10 minutes. Then came the cisplatin, which is the drug that has more harsh side effects. It took 2 1/2 hours for the cisplatin to drip into his vein and then we were done.

For the first two days, Rick was "wired" on the steriod. He was out for walks, busily cleaning the kitchen, and hopping into his car to pick up a prescription. He couldn't settle down, so finally I had to order him to lie down for an hour! He rested on the sofa and finally asked, "Can I get up NOW?" Today, Sunday, is the first day he has felt the effects of the chemo. He is very tired and at times he says it feels like there are little things crawling in his hands and feet. (Who knows, maybe there ARE little things crawling in his hands and feet.) He and Conner have still been taking 4-lap walks around the pool every hour or so and thankfully, he is still not nauseous. Other than that, he has rested most of the day.

What is amazing to me is Rick's ability to maintain a positive attitude. He always manages to smile and look on the bright side. So far, the chemo hasn't been as bad as we feared. We'll hope the effects continue to be minor and we'll keep you posted.

Hi All -
Some of you said you are curious about what Dr. Sugarbaker's response to the question about Alympta will be. Here it is.

Sugarbaker, David John,M.D. to me
show details 5:30 PM (22 minutes ago)

Hi. An Alympta assay has not been released by the oncotech company . We would certainly get it if they had it . There are three regimes with good track records in the literature. Cis-alympta, CAP ( adriamycin,cyclophasphomide and cis plat) and gem cis plat. We have a read out on two of these for Rick on the current report. . So we have options and I would defer to Dr Garland on the course of chemo . We however are very excited about Ricks report in that it gives us another option with a very very favorable resistance pattern . I tried on several occasions to reach Dr Garland but we missed and I will try again upon my return to boston on Thursday . Sounds like Rick is doing very well. The dry nonproductive cough is common and may last up to 3 months. All the best ds

Radiation Oncology Visit

Hi All -
Rick, Tricia and I visited Dr. Alexander Chi, the radiation oncologist. We reviewed the procedures and risks of radiation. Dr. Chi had hoped to begin the radiation simulation today, but Health Net did not approve the planned procedure yet, so we will need to come back - hopefully tomorrow. In the meantime, Dr. Chi talked with Dr. Garland. We see her on Thursday and Rick will have one round of chemo before radiation. Dr. Chi said radiation will run 25 days and begin around June 21 - if all goes according to plan.

Visit today with Dr. Garland

Hi All -
We saw Linda Garland, the oncologist today, and she checked Rick's vitals, took some blood, listened to his lungs, etc. All was good. She asked if he was having a harder time breathing in Tucson than he did in Boston (he nodded) and she said it's the elevation here. She said that his treatment will start with radiation and then follow with chemo. (We talked with Jackie Lee from Boston yesterday and she told us that Dr. Garland feels that Rick should have chemo in addition to radiation - even though Sugarbaker told us it would just be radiation.)

Dr. Garland referred us to Dr. Alexander Chee, radiation oncologist at UMC. She said sometimes she orders chemo and radiation at the same time, but because Rick's radiation will be in the lung cavity right up against the heart, they wouldn't do both at the same time. We have an appointment to see Dr. Chee on June 1, next Tuesday. Dr. Garland said it will take him some time to plan the radiation and it won't start immediately. She said if there is too long of a gap (more than 2 weeks), she will give Rick a round of chemo before the radiation starts. We will e-mail her after the appointment next Tuesday and make a decision about the chemo. We asked how long the radiation will run and she said it varies, so I guess we will learn more next Tuesday!

One interesting thing is that an analysis was done by Oncotech of how Rick's tumor responded to different types of chemo. Dr. Garland was dismissive of the analysis because it did not test pemetrexed (Alimta) which she said was one of the most effective drugs for treating meso and the analysis has not been approved by the FDA. I will send an e-mail to Sugarbaker asking why pemetrexed was not included in the test and let you know what he said.

I will post again next Tuesday after we see Dr. Chee.

Home

Hi All -
Dry heat never felt so good! The flight from Boston was delayed landing in Dallas and we missed our connection. There was a good bit of rushing from one gate to another - and although Rick was supposed to have a wheelchair, he ended up needing to take the tram from one terminal to another and walking from gate to gate (following the Tucson flights on the schedule) until we found someone who managed to get us booked for an evening flight. Luckily, we were able to fly standby on an even earlier flight and got into Tucson about 4 hours after we were scheduled to land. Otherwise the trip was fine but Rick did more walking than he had done since before the surgery.

Predictably, Rick is very tired today after yesterday's travel, but we are enjoying being home. The dogs were so happy to see us, although I'll bet they miss Tricia and Mike's two dogs. (I am sure Tricia and Mike are happy to have only two dogs again.)

We visit Linda Garland, the oncologist, on Thursday. We'll post what we learn after that appointment.
Sue

Cleared to fly

Hi All
Rick saw Sugarbaker this a.m. and was released to the care of Linda Garland in Tucson. We reviewed the surgery and follow-up. Sugarbaker said that the tumor in Rick's lung had grown so large that it was a very tricky surgery and there are times when the tumor is that large that he decides that it can't be removed and closes without doing anything. He said he can remove 60% of the really large ones and closes 40% of the time - and that Rick was right on the edge between the two. Luckily, he got the whole thing out and is confident that Rick will do very well. (I am sure all those powerful prayers and good wishes on April 15 made the difference.) We read through the follow-up on all the lymph nodes that were removed and although DaSilva had reported earlier that there were two nodes that came back positive for meso, the actual report said only one that was right next to the tumor.

Sugarbaker said Rick will need radiation, but he doesn't think he will need chemo. It's funny, but that made me nervous instead of relieved. I want them to throw everything they have at this ugly cancer! I am still impressed by how approachable and personable Sugarbaker is. I call him Sugarcoater because he always insists on taking a positive perspective on everything..Which is a good thing...but for some reason I need to have every possible negative thing examined too. I just don't want the doctors to miss a single molecule of information that could save Rick's life.

We will return here for follow-up tests and visit in October. When I consider all that has happened in our lives since the end of February when Rick first had the fluid drained from his plerua - until now - it's incomprehensible. We have traveled a very bumpy and winding road that seems to have delivered Rick from the death sentence that his internist gave him. Please don't stop those prayers though. We always need them and we still need to find out what the oncologist in Tucson has in store for Rick!

Thanks to all of you for your continuing support.

Last few days in Boston

Hi All -
Thanks to all of you who have faithfully followed the blog and have sent prayers, good wishes, and supportive comments. Rick continues to get stronger every day. We visit the doctors again tomorrow and then should be cleared to return to Tucson on Thursday. It will be a very tiring journey for Rick, but when we get home he can rest in his own bed with his dogs at his side.

We drove to a beach in Quincy today and had a lunch of fried clams and clam fritters in the chilly but invigorating ocean air. It wasn't our usual healthy lunch, but tasted wonderful. Suzi and Timm returned to New Jersey this afternoon and we are counting the last few days here in Boston.

I will post tomorrow following the doctor's visit. After that, I will post if there is news - hopefully all good news. Otherwise I won't be posting every day. Again, thanks to all of you for standing beside us and lending support.
Sue

More of the same

Another good day, although Rick was a bit tired after the big movie field trip yesterday. Suzi and Timm came today and will visit until Tuesday a.m. David and Wendy also came by for a few hours after their son CJ's lacrosse game. The company is a good diversion, even though it may wear him out. No big deal - he'll just sleep 13 hours tonight instead of the usual 12!

It's Friday in Boston too!

Often on Fridays, Rick and I go to a movie, so that is what we did today. There is a theater directly across the street, so it wasn't a big journey and today we caught the mantinee, but it was fun. When we went in it was cold and raining and when we came out, it was sunny and warm, so we sat outside for awhile. All is good here.

Visiting Nurse #2

Hi all -
Recovery continues without exceptional events. The routine goes something like this - sleep, eat, walk, repeat.

A visiting nurse from Brigham and Women's visited yesterday and a nurse from the International Mesothelioma Program visited today. I was reminded of Annabel's (often repeated) observation that you can't just send anyone into the home. Home visits require special training and expertise. Both of these nurses were skilled and nice (although #1 showed up without appointment and #2 was the ICU nurse who received Rick directly from surgery and didn't remember that she had taken care of him.)...They took temperatures, blood pressures, reviewed medications and then they were finished. Their behavior was the same as it would have been if they walked into his hospital room to take vitals and then left. Thankfully, we don't need any special support but I wanted to ask them why they were part of the home visiting program and why they think home visits are important. They need a skilled mentor! Not my job, so we move on.

Starbucks today, but no coffee

Hi all
It is so good to be out of the hospital. Rick needs to eat a lot of protein and his brother got the idea to bring him lots of packages of salmon and a George Foreman grill. Crazy idea - and now we are cooking every meal on the grill! Who knew it could be so easy to grill salmon?

Rick is making great progress - eating and sleeping well. He still is very weak and he is taking so many drugs that make him light headed, sleepy, and nauseous (they all say that on the label). Often he thinks he can't go for a walk, but once I get him up and going, it is hard to stop him. This morning I convinced him to take the elevator, walk out of the building, and go to the Starbucks (which is the very next door) to buy a newspaper. He is limited to one liter of fluid a day and every ounce is supposed to have calories, so he hasn't been drinking coffee. The papers were sold out, but instead of heading back to the apartment, Rick just kept walking and circled the entire city block! It is cold and damp out, but he smiled through the entire walk and wasn't out of breath at all. He may be thin, but he is still very strong and once he discontinues some of these medications I think he will feel so much better.

Thanks for all your calls and good wishes.
Sue