Three weeks is one week too many

It's certainly been a week of ups and downs. Linda started her third week off Sutent by walking the length of our street (300 ft uphill) and staying outside for a while to talk to some of the neighbors. She was clearly getting her strength back, but it would only be temporary. By Wednesday, she was starting to lose her appetite again. On the other hand, the mysterious pain in her chest had gone away, so we could eliminate the painkillers from the daily medications. Thursday was the day we saw the cardiologist at Christ Hospital, and he had good news-- Linda's heart is fine. In fact he emphatically said that there was no heart damage, and that should not be a reason for her to stop using Sutent. We also had our weekly blood draw, so it was off to Bethesda North for that. (We've certainly seen a lot of the city lately, at least the parts of it that are near hospitals.) But as the day wore on, it was clear something was wrong---Linda was getting more and more tired. That afternoon we got a call from B-North. The blood test indicated very low Hemoglobin levels again (anemia), and Dr. Bhandari ordered another 4 hr blood transfusion after our appointment the next day (Friday.) Linda slept most of the rest of the day and couldn't eat at all.

So when Friday morning came around, she was so weakened from the low hemoglobin and lack of food that she lost her balance and fell. She was fortunate not to break anything, but she's got a nasty gash on her left temple. The weather was pretty bad Friday morning, but nothing was going to keep us from this blood transfusion now! Our office visit with Bhandari came first, and as always was very interesting. He said he finally spoke to Dr. Atkins in Boston. Atkins told him that he remembered Linda and her unusual case (we had to stop the IL-2 treatment because her cancer was growing so rapidly.) He also indicated that he had seen cases of low albumin and low protein levels that were caused not by Sutent, but by the cancer itself. He also noted that even as aggressive as Linda's cancer is, the pathway it uses to reproduce is clearly the one that Sutent is blocking, given her very positive response of tumor shrinkage. So he strongly urged Bhandari to continue Sutent, at a reduced dosage.

Bhandari also pointed out that Linda's anemia was probably cancer-induced as well, so it was imperative that we begin treatment right away. Apparently three weeks of R&R had also given the cancer time to regroup. However, there was good news. Linda's thyroid levels were back in the normal range, her platelet count was up, and while still low, her blood protein levels are higher than they'd been in a month. So it's back in to the battle once again. Linda is still weak, but it is amazing how much better she looked after the transfusion. But until she gets some strength back, I follow her around whenever she's walking or standing-- she doesn't like that one bit, but she's tolerating me for now.

Jim

Another Mystery

We had such high hopes for the week last Saturday, but things just didn't work out. Linda had some lingering chest pain after the Thoracentesis procedure last Friday, and we were led to believe that would subside by the next day. Unfortunately, it didn't. In fact, it got worse as the weekend progressed. So while we had a great time with Andrea over the weekend, Linda was on Tylenol or Vicodin most of the time. We called the doctor on Monday morning, and before noon we were back at Besthesda North for more blood tests and an electrocardiogram. The Oncologist was still baffled by the loss of protein through her remaining kidney, so we ended up seeing the Kidney specialist on Thursday. By this time the pain had migrated to her back, and by Friday it was in her abdomen. Dr. Bhandari said it was not likely directly related to tumor growth since it was moving around so much. The chest pain was a real concern to him, as there have recently been reported heart problems associated with Sutent use. More blood tests on Thursday, still more on Friday, as well as an echocardiogram and a chest x-ray. He indicated that he is less and less inclined to stick with Sutent, and is considering a different medication. For now that means another week off treatment. And in addition to seeing an Endocrinologist for the thyroid, a Nephrologist for the kidney, we now have an appointment to see a Cardiologist this Thursday. Hopefully by next Friday Bhandari will have some answers when we see him again.

In the meantime, Tony's in for the weekend! This usually means wood gets cut, fires get made (in the fireplace, that is) and piles of crap we have around the house get sorted and stored. We wish we knew where his neat streak came from. Also, if you'd like to know the sex of Andrea and Chris' baby, check the link on the lower right that says "Andrea and Chris' Baby Blog". (Warning: graphic pictures and nudity are on this site--that is, the ultrasound shows the baby naked.)

Luv ya,

Jim and Linda

What a difference a day makes

It's Saturday morning, and Linda is resting and recovering from a rather hectic week. The Thursday blood test showed very low hemoglobin levels, so the doctor said it was time for another blood transfusion. We were already scheduled to go to Bethesda North on Friday afternoon for another Thoracentesis, so the transfusion (which takes about 4 hrs) would have to be early in the morning. We went back over Thursday afternoon to get the blood crossmatched to save time Friday morning. In the meantime, Linda's breathing was getting worse and worse, and Thursday night was very hard for her. She wasn't able to walk into the treatment center Friday morning at 9am, so we were moving around Friday in a wheelchair. The transfusion went fine, and we got to the Thoracentesis appointment in the nick of time. Surprisingly, they drained off even more fluid (1275 ml) than they did on Wednesday. She started having some pain right away, which the doctor performing the procedure said was normal, as her lungs would be re-expanding into the area where the fluid was drained off. She was already starting to look better from the transfusion when we left the hospital at 4pm.

Last night though, even though her breathing was improving, the pain in her chest got a lot worse. Some heavy duty painkillers got her through the night, and it all seems to have subsided, at least for now. Even though she's still in bed, she looks, feels and sounds better than she has in weeks. Just in time, since Andrea is coming in later today.

Dr. Bhandari spent a lot of time with us Friday morning during the transfusion, even though we didn't have an appointment scheduled. He said he was checking with the drug manufacturer to see if there have been any other cases of low Albumin levels reported, as this is not listed as one of the side effects. He also put a call in to the doctors in Boston who treat a lot more cases to see if they've seen anything similar. In the meantime he is consulting with a Nephrologist (kidney specialist), since the Albumin is being expelled through her kidney. We'll probably have another appointment next week.

Dr. Bhandari went over the detailed radiologist report from Monday's CT scan with us, and the tumors in Linda's lungs are significantly smaller in volume, averaging around 50% smaller since the last scan only two months ago. He said he has never had a patient whose tumors responded so dramatically to this drug (Sutent), but at the same time he's never had a patient who had so many debilitating side effects either. He told Linda that she's in a war, and this was only the first battle. It's time to pull back and let your wounds from the battle heal, and then plan the next attack.

So we're officially on R&R this week. The sun's out, Andrea's on a plane on her way home, and Linda's even talking about having a glass of wine later-- so I know she must be feeling a little better.

That's all for now,

Jim

Thoracentesis

Well, the day wasn't a total waste-- at least we learned a new word. Thoracentesis is a procedure that 's performed to remove excess fluid from the area between the lungs and the chest wall. Linda had been having trouble taking deep breaths yesterday, and last night had trouble sleeping because it was getting worse. We called the doctor's office at 10 am this morning, and by 11 they called back to say that the CT scan from Monday indicated Linda had a "Pleural Effusion" (there's another new word!), the clinical term for excess fluid I mentioned earlier. By noon they had an appointment for the outpatient procedure scheduled for 2pm today at Bethesda North. They inserted a needle in Linda's back behind her right lung and within 15 minutes, drained 1.2 liters out (a little more than a quart.) We go back Friday to get the left side done. Theyll run tests on the fluid, but we're expecting that the reason is the low albumin level that I mentioned last Friday, that was causing the fluid build up in her abdomen. All side effects of the Sutent. They call this stuff "Targeted Therapies", but it seems to me it's a little like deer hunting with a sawed-off shotgun--sure you kill the deer (cancer cells), but you do a lot of damage to the rest of the forest in the process.

We go for another blood test tomorrow, then Friday for Thoracentesis on the left side. They don't do it all at once because it could cause a collapsed lung. That means we will have been to a doctor's office or a hospital 4 out 5 days this week. But that's ok, because the doctor called tonight to see how the procedure went, and he told us that besides the fluid issue, the CT scans also indicated the tumors have continued to shrink-- not a lot, but they're being held in check.

Linda's still in a lot of discomfort. The doctor said it could take a while for the lung to re-expand, so we're hoping tomorrow will be a better day. We're anxious to see how the blood tests come out.

Luv ya all,

Jim & Linda

Good news to share!

For a change we have good news to share that has nothing to do with my medical condition. Andrea told us over Thanksgiving that she and Chris are going to have a baby!!!! But we had to wait until she was 3 months along until we could tell anyone. That was a really hard thing to do! Sorry that it took so long to get it on the blog. Needless to say, we are ecstatic about the news. He/she should be arriving around July 20. (Andrea is SURE that will be the exact date!)
Update on tests: I'm going tomorrow for another CAT scan of my lungs and abdoman. They want to see if everything is OK since I am stopping Sutent for a while. Oh, boy, more Barium to drink!
I'm sorry that I haven't been in touch with many of you lately. I've had a few setbacks that just make me want to sleep. Hopefully, while off of Sutent, things will improve.
Love to all of you,
Linda

Not a Great Start to the Weekend

We had blood tests and saw the oncologist on Friday morning. Just about everything was out of the normal range. White blood cells, red blood cells, protien, hemoglobin levels were all low. The hypo-thyroidism has gotten progressively worse with each test, in spite of doubling the medication. All of this explains why Linda has gotten progressively more and more tired with each passing day. Platelets, which are needed for clotting, were very low. There's also something called Ablumin that was low, and as a result fluid was leaking out of her circulatory system and residing in her fat cells, not that Linda has a lot of those to begin with. He said all of her recent weight gain was all fluid. And since the fluid wasn't where is was supposed to be, she was actually getting dehydrated.

So you get the picture. While the Sutent continues to keep the cancer in check, the side effects are getting harder and harder to deal with. (The low platelet count is what sent us to the ER in December after the nose bleed wouldn't stop.) Dr. Bhandari said we would have to stop the Sutent for a week or two, primarily because of the low platelet count. That was ok with us--- we were going to suggest it if he didn't. There were a couple of things he was able to do in the treatment center--Hemocrit shot, Saline IV for the dehydration and an Alblumin infusion. Since it was going to take two more hours for the IV, I called Don & Carole to pick Linda up, and I left for work. That turned out to be a bad idea, because on the way out of the treatment center that afternoon, the fatigue finally caught up with her --Linda's knees buckled and she went down in a heap. Catherine, the nurse who was with her actually got underneath Linda and broke her fall. Nevertheless, they didn't want to take any chances, so it was off to the emergency room again. To make a long story somewhat shorter, I got the message at work and caught up with Linda, Don and Carole in the ER. They had been waiting for almost an hour, and Linda was already feeling better (not great, but better.) When we finally saw the ER physician, he checked her for broken bones and sent us home. We left the house that morning at 8:45 for a doctor's visit, and got home at 6:30 that night.

Linda has spent the day trying to catch up on all the rest she missed yesterday. That hasn't exactly been easy, because she's had to deal with another bloody nose, which showed up right on cue. We hope we don't end up in the ER again tonight.

More to come from Linda as soon as she's feeling better.