More details

The clinical trial is currently open to six participants. My tumor is being tested for the IGF-1R marker. Once the results are back, I'll have to go back to sign another consent form, have blood work and an ECG. I should be able to start within a week or so after that. I'll receive two medications via IV once a week: A12, which blocks IGF-1R, a protein in cells that helps keep tumors alive, and temsirolimus, which attacks the protein mTOR. It will take an hour for the first infusion, then I wait an hour, then the second infusion takes 30 minutes. I don't know what type of meds they will give me prior to and following the infusion, but apparently they will be giving me something to reduce side effects.

Ah yes, the potential side effects. For A12, the likely side effects are high blood sugar (because it targets an insulin-like growth factor) and fatigue. Some of the less likely side effects: allergic reaction, decreased white cell count, anemia, weight loss, acne, vomiting, or seeing flashing lights or floaters. Some symptoms seen in people who received A12 in other studies: diarrhea, muscle spasms, chest or abdominal pain, abnormal electrial function of the heart, and my personal favorite, Posterior Leukoencephalopathy Syndrome, which are changes to the brain that show up as confusion, change in eyesight, seizures or other symptoms, which are usually reversible but in rare cases are potentially life-threatening and may lead to longterm brain damage. Yay.

For temsiroliumus, the likely side effects include nausea, diarrhea, mouth sores (Dr. Maki mentioned this one specifically), high cholesterol, and rash. Some of the less likely: high or low blood pressure, hair loss, constipation, difficulty swallowing, infection, nosebleeds, depression, cough (just what I need), insomnia, inflammation of the pancreas, change in vision, fluid buildup in the chest, and blood clot formation, especially in the legs, which can travel to the lung. Also making the rare but serious list: heart failure, kidney failure, development of fluid around the heart, bleeding into the intestines, lungs or brain, and liver failure.

Now, as my friend Kay relates, they need to tell you every potential side effect by law. That doesn't mean that any of those side effects will occur. Other than high blood sugar and mouth sores, Dr. Maki and his research assistant didn't mention any other side effects seen in the phase I trial. Still, it makes me (and Ed) nervous. They will be watching all of us closely for any side effects, and if anything happens, I can always drop out of the trial. Let's keep our fingers crossed that I don't even have the likely side effects.

After the first cycle (six weeks per cycle), we will all be scanned. The doctors will review the results and see if there are side effects that require changes to the treatment. After that, the study will be open to 20-40 other patients at MSKCC. Nationwide, they expect to enroll just over 100 participants. I will remain in the study until I drop out, the study ends, or I show progression of disease (growth in any of my tumors). The study is currently scheduled to end in 2012.

So there you have the details. I will let you know about my scan results from last Wednesday and my starting date for the trial as soon as I hear something. There is -- thankfully -- nothing on the calendar this week other than a Zometa infusion on Friday.

I hope you all enjoyed your Thanksgiving holiday and took advantage of the long weekend.

I'm in...but do I want to be?

Just a brief update because I'm swamped today. Yesterday I found out from Dr. Maki, who is running the clinical trial, that I am in barring any strange mets found on the scans I had today. The phase II trial is starting with six patients, and I am number 6. I was very pleased to get this news, and then I read the material they provide. In it, there are several pages of potential side effects, which include diabetes, heart disease, kidney disease, problems with brain function, and on and on. Dr. Maki stated that two problems experienced in the phase I trial were high sugar levels (glucose) and mouth sores. He didn't say if these were the only problems experienced.

I'll write more when I have some time and the material in front of me.

Have a wonderful Thanksgiving. I know I'm grateful this year, as I have been for many years, for the love, support, kindness, and thoughtfulness of those who follow this blog and those friends and family members who don't. If this disease has taught me anything, it's that there are more generous and loving people in this world than I previously believed.

I thank you for you.

Is it Monday already????

This past weekend was a very busy one -- the busiest I've been since surgery. Saturday morning we headed out early to do errands, then Ed went off to help out a friend and I went for a cut and color. Then it was off to get gas and stop at a store to pick up a few things. I followed that with a visit to Lydia G's, where we had dinner. We left the house at 9:30 in the morning, and except for 45 minutes at home for lunch, I didn't return until 7:30 -- at which time I went directly to bed! Sunday involved chores, like ironing, and getting things ready for this morning.

When that alarm went off at 4:02, I thought I was dreaming. Nope, it was back to work day. The bus ride in was more difficult than I anticipated. My incision is very tender at the moment, and I'm contemplating taking a few ibuprofen to ease the discomfort. And, despite having shorter coughing fits at home since I started with Symbicort, I coughed on and off all the way in on the bus. I'm sure my fellow passengers were simply thrilled to have me back.

I've been busy this morning going through all the accumulated mail, e-mails, filing and bill paying that needs to be done, and I'm already pooped. I can't imagine how I'll feel at quitting time. I hope I can make it through dinner without falling asleep!

Hope you had a wonderful weekend. I'll be back soon with news about the clinical trial.

Clinical trial update 2

I have an appointment to see the head of the clinical trial on Tuesday. Dr. Maki is also the head of the Sarcoma Department at MSKCC, and he should be able to give me more details about this trial. I've been searching all the websites I can find that list clinical trials and have found no information on this one. Of course, I'm trying to find it based on the information that Dr. K gave me (two chemo meds vs. one, mTOR inhibitor, IGF) so if she didn't get all that correct, I won't be able to find it. I'll post an update here next week.

I'm also having scans next week: CT scans of the chest, abdomen and pelvis and an MRI of the brain. Dr. K didn't explain it to me, but I believe one of the exclusions in the trial is no brain metastases. As you know, I had mets to the bones of the skull, not to the brain, but they have to have scans to prove it. I'm not looking forward to the brain MRI, as I am stuck inside that tiny tube with a cage over my face for about an hour, but I'll be bringing my Ativan along to calm my nerves.

If I don't get into this trial, I found another trial that I would be interested in. I'll ask Dr. Maki about that one when I see him based on his opinion about my chances of getting into the first trial.

It's hard to believe that this is my second to last day at home. Too bad it's so crummy here today -- cloudy and drizzly -- although the temps are supposed to reach 60. No walk for me today! Hope the weather is better wherever you are.

Clinical trial update

I received a call from Dr. K yesterday regarding the clinical trial. It seems that it may be more difficult for me to get into than she previously indicated. First, my tumor should be IGF (Insulin-like Growth Factor) positive. However, they may be including some patients who are IGF negative, so if I'm not positive, it "doesn't necessarily preclude" me. Second, the protocol requires a biopsy of a tumor seven days after beginning treatment. All of my tumors are too deep in the lungs to biopsy, so I would need a pass on that part. That, also, "doesn't necessarily preclude" me. Not very encouraging from my point of view.

To explain it as simply as possible and as much as I understand it, IGF-1R is part of a signaling system in the body that encourages the growth of many tissues, including cancerous tissues. The thinking behind this anti-IGF therapy is if the IGF-1R can be targeted, perhaps the cancerous tissue would stop growing or reproducing.

The trial starts in about three weeks. They are screening potential participants and I may have to go into the city on Friday to sign the paperwork allowing them to test my tumor samples for IGF receptors. I would also have to have bloodwork done. Dr. K is also ordering CT scans, since it's been two months since my last scans and I've been off treatment that entire time.

So there is some progress on this front but no definitive answers yet. When I know more, you'll know more.

Another week, another doctor

Yesterday we met with the radiation oncologist at Riverview Medical Center with whom we discussed Cyberknife radiation last October. As you will recall, we decided to go with the IMRT/IGRT radiation with Dr. Yamada at Memorial Sloan-Kettering instead. This time, we wanted to investigate whether Cyberknife might be an option to debulk the major tumor in my lung. We had asked Dr. Flores and the pulmonologist about this, and they both thought it was worth investigating.

Rather than bore you with all the details, I'll sum up our meeting. The doctor felt that attempting to get into the clinical trial was the most important item on my agenda. If I don't get in, I might want to consider trying a round or two of Gem/Tax and have scans again before considering Cyberknife. As he stated, the last time the tumor was measured was almost two months ago (two months without any chemo treatment), and he would have to assume that the 4.6 cm tumor is now larger. (Six centimeters is his outside limit for performing Cyberknife.) While he believes that Cyberknife could certainly debulk or even destroy the tumor, there are a number of risks: damage to one of the major vessels while the tumor marker is implanted; damage to one of the major vessels from the radiation; inflamation of the lung due to the radiation resulting in permanent shortness of breath; and a potential longterm complication of an aneursym on one of the vessels. He also conceded that the radiation could potentially damage the phrenic nerve and make my cough worse rather than improving it. It's a lot to consider.

So right now we are waiting to hear from Dr. K about this trial and when it will start. I'm beginning to get nervous about being off treatment for this long, but I know that starting something new now could jeopardize my chances of getting into the trial. I'm hoping to hear from her early next week.

My boss is going to be on vacation next week, so I'll be working from home and won't have to go into the office for another week. I had been planning to go back on Wednesday, which, believe it or not, will be four weeks since I came home from the hospital. Now I have another few days to rest up and try to wrap my mind around the idea of getting up every morning at 4:05. Yikes! At least the first week will be a short one.

It's been rainy, windy and chilly here for three days now, but the Nor'easter is supposed to move out sometime tomorrow. I did a half mile inside Costco on Wednesday and rode the incumbent bike for three miles today, but I hope to be out for my walk tomorrow or Sunday. I hope the weather is better wherever you are.

Have a great weekend!

Two days, two doctors

I have to admit that despite just having seen the pulmonologist and the surgeon, some things we discussed are a blur. Nevertheless, we did get some answers to some of our questions (and there were questions we forgot to ask).

The pulmonologist has given me a bronchodialator (Symbicort) to try for two weeks to see if that gives me any more relief. He confirmed that it is the tumor pressing on the phrenic nerve that is causing the cough, but unlike the interventional radiologist that Dr. K spoke with, he feels that even if that nerve was permanently damaged or destroyed, the side effects would be minimal. Something to keep in mind.

He also agreed when I suggested it that CyberKnife might be an option to deal with the main tumor. As you may recall, we explored CyberKnife last year when we were dealing with the bone metastases, but decided to go with the experience of Dr. Yamada at MSKCC since we were dealing with my radiation close to my brain. We are going to schedule another appointment with the CyberKnife doctor and get his opinion on at least trying to debulk the tumor.

The surgeon said he thought he told us the possibility existed that the surgery would not be successful. Nope, you didn't. He explained that he absolutely could have performed the surgery to resect the tumor and has done a number of similar surgeries, but the issue was location. If things had not gone perfectly, he would have had to remove the entire right lung. Because I have metastases in the left lung already, he felt I needed all the lung capacity I could get for as long as possible. He wouldn't have wanted that chance taken on himself, therefore he didn't take that chance on me. He views every case individually to decide what's best for each particular patient, and while it was disappointing not to be able to remove the tumors, he did what he felt was best. He described himself as very aggressive, yet this was a decision he was comfortable having made. I was satisfied with that explanation.

He removed the steristrips and my incision looks pretty good. No stitches to be taken out, thank goodness. He then suggested that he would contact the pain management department at MSKCC to find out about numbing the phrenic nerve, as he did after surgery, to provide me with some relief from the cough. I don't know if I would be willing to have shots every five days (which is how long his shot lasted) for the foreseeable future, but we'll have to discuss that with whomever he puts us in touch with. He, too, thought CyberKnife was something to look into.

So that's the update for now. We'll set up an appointment to find out more about using CyberKnife on the main tumor and wait for Dr. K to call back with more information on the clinical trial. In the meantime, I am continuing my walks, taking naps when I need to, and trying to get some more calories into me. It will take time, but I should be back to feeling more normal soon.

Thanks for all the cards and e-mails. I really appreciate your support.

Nap time!

Overdue update

I apologize for not updating the blog before now. It's amazing how the day really gets away from you even if you aren't doing much of anything. The morning rushes by, then it's lunchtime, then the afternoon rushes by, and then it's dinnertime and bedtime. Last week I couldn't keep track of what day it was. Guess I've been home too long already!

My recovery is coming along slowly but surely. I've been walking at least six days a week since I came home from the hospital. I do a little more than a mile most days, but my speed is significantly slower than it was prior to surgery. I start off at a good clip and shortly lose my breath, so I have to force myself to slow down and just amble. Unfortunately, it's getting colder here (windy too) and getting myself out there is tougher each day. As I think I mentioned, our treadmill decided to kick the bucket just when I was assigned this mile a day task, and Ed has been trying to either fix it or decide on a new one. The ones today are much more expensive but more cheaply made than ours, and it's tough to decide to throw $700-$1,000 at a machine that might only last a few years -- and require an expensive service contract, too.

My steristrips are still attached, although they might be removed at the surgeon follow-up tomorrow. The area where my chest tube was inserted is still tender, but I'm getting much more use out of my right arm lately. I even made the bed yesterday. LOL Seriously, when I first got home I had a difficult time brushing my teeth and getting a shirt on and off. Today I can get dressed, shower, lift a milk or water bottle (provided it contains a half-gallon or less), water my plants, tie my shoes, etc. I haven't done any cleaning yet, but I did cook dinner one night. I'm still not putting any weight on, but it's not for lack of trying. I've been eating stuff I normally shouldn't be eating, but we're trying to reverse the trend. Once that happens, I'll get back to more of the good stuff and less of the sugary stuff.

Our appointment with Dr. K was a mixed bag. I let Ed voice his frustration without interrupting him. I have a tendency to think that if people like me, they will treat me better, so I try to avoid conflict with the doctors and nurses that I deal with. However, I realized that (a) this doesn't really get me better treatment and (b) it doesn't allow us to honestly voice our issues with the doctors. I don't think Ed got much satisfaction other than being heard, but he needed to get all his issues out on the table.

In summary, we learned the following: There is a clinical trial set to start at MSKCC within the next month or so that Dr. K recommends for me. It involves two chemotherapy agents that have been tried individually on other cancers, and one showed some success on Ewing's sarcoma. This phase II clinical trial seeks to combine the two agents and see how effective they are against other types of sarcomas. I don't have any details of the trial as it is new and the meeting to hammer out the final details was taking place yesterday afternoon. She said she would get back to me in about two weeks. That is about the time that I would be restarting chemo under any circumstances, as she recommends waiting four weeks after surgery.

She contacted an interventional radiologist (at my suggestion) about other procedures to address the tumors (RFA and embolization). The radiologist, presumably after looking at my records, informed her that these radiation techniques might debulk or reduce the size of the tumor, but because of the main tumor's location on the nerve that is making me cough, it could do more harm than good. She recommends seeing my pulmonologist again (which we are doing today) to see if he can prescribe something to give me more control over my cough.

Tomorrow we see the surgeon, and I would almost guarantee that he is not going to be one of my fans by the time we are finished. Although Dr. Windsor (my NJ oncologist) explained to me the limits of scans, I still want some answers. Dr. Windsor said that scans are in two dimensions only, so if, for example, you held your hand close to a wall, the scan would show that your hand was near the wall, but it would be impossible to tell how close to the wall you were or if you were touching it. He also said that thoracic surgeons are among the most aggressive surgeons he knows, so if Dr. Flores says something can't be done, we should take him at his word.

That's not really my issue at this point. My issue is why we weren't fully informed that the surgery might not be successful. He mentioned that it might not cure my cough, but he never indicated that he expected less than success in removing the tumors. If I had known there was a certain percentage chance that it wouldn't be successful, I might have chosen chemo prior to surgery. Because I thought we were going in and taking them out, it didn't make sense to waste the chemo first.

So, we await more answers and information on the clinical trial. I will try to do better in posting, although this is the most I've typed at any one time since the surgery and I can feel it in my back. Thanks for your continued support. I deeply appreciate it.