Alimta is out, Hexalen is in

The Alimta was not working as well as it should. It has been discontinued. Her CA-125 level has been slowly increasing and the PET scan showed signs of increased growth. Her blood clots and the anticoagulation factor discovered in a previous blood test are a direct result of her cancer. The hope is to find a drug or drug combination that will stop her cancer from progressing. Lucy still have chemotherapy options available.

The new drug is Hexalen, an oral chemotherapy drug. Lucy will be taking it every day for two weeks, then get two weeks off. She will need weekly blood tests because of her clotting problem and the fact her blood counts were generally low because of the previous rounds of chemo. Her next blood test is a week from today, and it can be a port draw. That will give her arms a chance to recover from all the pokes she received in the hospital.

Her hemoglobin was still at 8.1, so that was a good sign. Her white count and platelet count were in the normal range. Her legs are slowly getting less swollen, she is having less discomfort, and she has not had a fever spike since leaving the hospital.

We still don't know if the Pradaxa is working. There is no slam dunk blood test that will help. The drug awaiting in the wings is Arixtra, the injection drug mentioned a few posts back. The challenge will be trying to figure out if she has a clot forming. Both legs are still pink and have peeling skin on them. It will be tough to spot the tell tale erythema (rash) or streaks from a forming blood clot. As I have mentioned, Homans' sign is wrong a lot, and Pratt's sign doesn't seem to be any better. If Lucy's leg pain starts increasing or if she starts having fever spikes, we're going to get her in for an ultrasound.

We're both frustrated and disappointed right now. It's been hard trying to find the bright spots in today's events. The biggest bright spot we have is your compassion. Thank you for that, it helps us through these rough patches.

Home and resting comfortably

We were concerned Lucy would have to be held another day. She had a fever spike last night of 101.4°F which took about an hour to break even with Tylenol. That was the last spike. This morning she took her antibiotic (Augmentin) and her Pradaxa on an empty stomach. After some mild nausea and a shot of Zofran she was fine.

Dr. Dittes came by to tell Lucy that he was confident her symptoms were clot related, not infection related. He wants her on Augmentin for 10 days and saw no reason for her to spend more time in the hospital.

Dr. Weinshal was rounding for Dr. Thurmes and got delayed. Lucy's hemoglobin was at 8.6, her pain was manageable, and she had no fever spikes today. He saw no reason to keep her in the hospital any longer.

The only snag came when Fairview's pharmacy thought they would be filling the Pradaxa prescription even though it was called into our local Walgreens. That took a while to get straightened out. Fairview's pharmacy is out of network so there is a much higher co-pay.

Lucy will get a couple days of downtime. Her next oncologist appointment and Alimta treatment is Thursday. I believe she will also be due for a vitamin B12 injection

We're both hoping for a quiet boring week for Lucy. She will need a couple days to decompress. For the first time in 9 nights she gets to sleep in her own bed. She won't be awakened every two hours and won't be listening to medical equipment.

Thank you for your love, thoughts and prayers! It helps get us through the rough spots. There may not be another post until Thursday.

Land of transfusion

Lucy's hemoglobin was at 6.0 and her platelets were at 50,000. Dr. Nashawaty had rounds this weekend and he mentioned the irony of keeping Lucy on heparin but also having to transfuse platelets. Her Alimta treatment probably caused the platelet count drop and may be contributing to the hemoglobin level being low.

On the plus side, her heparin is in therapeutic range. She will be in the hospital until at least tomorrow. One of the criteria for release is getting her off IV heparin. Our guess is they would also like to see any risk of infection in her leg eliminated and a noticeable improvement in her leg. It appears her leg is getting a little better. Like her last hospital stay, this will be a day-by-day event.

Today saw a steady stream of nurses and nurses assistants in and out. Lucy said one of her arm blood draws was at 3:00 am this morning. Her port has heparin in it so certain blood tests must be done via her arm.

Lucy's appetite is still good. I went the to cafeteria and picked up a grilled chicken sandwich for lunch. She asked to sample it and wound up eating the whole thing.

Steve and Liz came by this morning and brought cookies. Suzy was by this afternoon and left a stuffed snowy owl and a couple magazines. Julie called to see how Lucy is doing. We also appreciated all the great notes from everyone. Lucy and I do read the comments left in the group or in the blog, and we thank everyone for their words of encouragement.

We're hoping her heparin stays in therapeutic range tomorrow. That will put her one step closer to going home.

I found this scrub top in the gift shop. Lucy wants to see it when she is more mobile. I'm sure she will get one.

Suzy brought along a new friend for Lucy

Laissez les bons temps rouler!

Well, maybe not today. Lucy woke up with stomach problems this morning and was running a mild fever spike because of her blood clots. Her mood wasn't very cheery and she was fairly wiped out. Alimta is fairly well tolerated, but it still can cause a bit of stomach distress and wipe out. That's why she has to take the oral dexamethasone (steroid) twice a day for the day before, day of and day after chemo. The past few months have seen her face a number of challenges and it takes its toll. My guess is today's stomach problems were a direct result of her breakfast choices. She hadn't had Lucky Charms in several months. The whole grains sometimes cause a bit more fermentation in the gut when one is not used to eating them. She started feeling better later this afternoon.

Her first shot Lovenox shot went better than yesterday's. We're probably figuring out the right timing and rhythm. The humorous thing about the Lovenox self-injection guide is the phrase "think love handles". Lucy doesn't have any. Heck, I've dropped 54 pounds in the past year and barely have any remaining.

We hope Lucy will be feeling up to visiting her dad tomorrow. Her left leg circumference was almost a full centimeter smaller than yesterday's measurement. Her discomfort is now mostly from both ankles and seems to be joint pain rather than tissue pain. The pain killers are still effective and she is using fewer of them.

I must be suffering from chemo brain by proxy. I forgot to mention Lucy had a coworker stop by Thursday morning with some homemade soups. Her coworkers have been so wonderful and supportive! They have made meals and sent cards and flowers. It's nice to know there are some good companies left.

And on the subject of chemo brain, I managed to mangle the "Comfortably Numb" lyric yesterday. Sorry about that! How I managed to turn "just a little pin prick" into "you'll feel a little pin prick" is beyond me. I'd like to say "Damn you autocorrect" but I wasn't posting from an iPhone. I have an Andriod phone and there doesn't seem to be an equivalent, perhaps thankfully.

For those of you that are able, we hope you enjoyed a walk today. Lucy should be able to be walking normally soon.

Stop me if you've heard this before...

We fretted about today's oncologist visit, but Lucy's left leg stole the spotlight. We did not even get a chance to discuss the PET scan or CA125 level. Her rash is an erythema and is a sign of a blood clot. Her leg also ballooned up this morning.

Lucy did get her Alimta treatment, so something went right. She can take her multivitamins instead of the prescription folic acid since the multivitamins contain the requisite 400 micrograms folic acid. Lucy's next vitamin B12 injection will be during her next treatment in three weeks.

She was supposed to visit Dr. Thurmes tomorrow, but he saw her while she was getting chemotherapy. Lucy had an ultrasound on her left leg at Suburban Imaging at 6:30. As a precaution, Lucy will be getting twice daily Lovenox injections for a week followed by daily injections for around six months. Her Coumadin was stopped immediately.

We had about 45 minutes between the end of chemo and the ultrasound, so we had a quick dinner at Leeann Chin's about eight blocks from Southdale Medical Building. The Heartland Cafe in the medical building closed several months ago and a Subway is supposedly going in to replace it.

The ultrasound confirmed multiple clots in her left leg. However she was not admitted to the hospital. We'll find out more tomorrow. Apparently the belief is the Lovenox will work on the clots such that she won't require hospitalization or TPA catheters.

I will be administering the injections. It looks like the syringe has a short small bore needle. Lucy has no abdominal fat remaining because it was removed in her debulking surgery. The "tummy poke" is best for her, so I'll have to be careful. It's funny, I could probably give injections to anyone else, myself included, but the thought of giving Lucy a shot worries me. I know it's irrational.

So yes, you've heard the blood clots stuff before. Believe me, we hate reruns, too!

Blood tests

Lucy's other amaryllis opened while she was in the hospital. There are six flower on the stalk.

The tulips Lucy received from Annette and Al

I completely spaced out mentioning the tulip bouquet Lucy received from Annette and Al on Tuesday. Mea maxima culpa! Annette and Al own Carver Country Flower and Gifts in Carver. Tulips are so cheery and get people thinking about spring. Even though we have had an unusually mild winter in Minne-snow-ta, it will be nice getting back into the gardens soon!

This afternoon she had her blood drawn to determine if her Coumadin dose is still effective. She now has an alternating daily dose of 5 mg and 2.5 mg until Monday.

Next week is booking up quickly: Monday is her next blood work to see how well the Coumadin dose is working, Tuesday is the PET scan, Thursday is her appointment with Dr. Boente and Friday is her appointment with Dr. Thurmes. As far as we know she will get her next Alimta treatment on Thursday.

We take simple things for granted. Our bodies are amazingly complex bio-mechanical wonders governed by amazingly complex electrochemical networks. Nerves trigger muscles, muscles and connective tissues move joints, joints move limbs, limbs move the body. (Anyone who has studied anatomy or kinesiology in detail will notice this is a simplified 50,000 foot overview.) Lucy's leg is looking less swollen and the redness is slowly turning pink. She still has some stiffness in her ankle and finds relief when she can prop her leg up. She can manage a few steps without the walker and her right ankle is more stable because of some regained flexibility. The pain level is also subsiding. She is hoping to be cleared to return to work a week from Tuesday (her company observes the President's Day holiday on the 20^th).

There probably won't be an update until Monday. Until then, thank you for taking the time to read this and showing your support for Lucy!

And on the seventh day...

Lucy's Coumadin dosage needs adjusting upward, so she will be here at least one more day. Unfortunately, her hemoglobin dropped from 7.8 to 6.1 so she needed a two unit transfusion. Lucy's birthday is Sunday the 5^th and I would love to see her home by then! It is a day-by-day holding pattern.

Molly, Dr. Nashawaty and Jackie from Minnesota Oncology were by to see her progress. Acute anemia can show up in patients receiving chemo. Lucy was originally scheduled for her next Alimta treatment on Thursday, February 2^nd. The treatment has been moved to February 16^th. Her body will get a little more chance to recover. Her white is stable and in the normal range, and her platelet count is normal and stable.

So maybe today didn't start great, but there is still good news. Molly noted that Lucy's calf skin is less taut. It no longer looks like it is going to split open. She still has quite a bit of swelling in her right ankle and a slight amount in her left ankle. The left ankle swelling will reduce as she becomes more active. Her right leg still cannot be massaged and they can't put a "puffer" on it because there are still a couple small clots. They do not want the clots to dislodge and start travelling. A "staycation" is good enough for the clots.

Lucy only needed one Dilaudid shot last night for pain. She is taking oxycodone tablets to manage pain. Her pain pump was removed last night.

A Physical Therapy specialist came by this morning and checked Lucy's strength and range of motion. She also had Lucy do a series of simple exercises that can be done in bed and left a booklet detailing how to do the exercises. Lucy is supposed to do them twice a day.

An Occupational Therapy specialist came by about an hour later. She assisted Lucy out of bed. Lucy managed to walk around the bed. Lucy's pain doesn't increase very much when she puts weight on her leg. Her ankle still has a limited range of motion so getting her foot flat on the floor is a challenge. After a couple minutes, she can stand flat footed. Walking is very slow. She is not unsteady on her feet. Lucy has surprising physical strength for someone so petite. The goal is to keep her from losing strength while her leg gets better. She will try using a walker tomorrow.

Give your loved ones a hug from us, and thank you for your support!

Start of Chemo Round Four

Our society places a great deal of celebratory value on the passing of the old year. We look back on the old year and hope the new year is better. With as bad as 2011 was, 2012 has got to be better, right?

The new year did not start out as nicely as hoped. Because there was a slight increase in Lucy’s  CA125 level, Dr. Boente wanted labs done a couple days in advance. A CA125 test takes about two days to complete. The labs indicated her hemoglobin had dropped to 6.8. Lucy needed a transfusion on January 4^th. Her next scheduled Taxol/Avastin treatment was scheduled for January 5^th. This would have been the first treatment of the fourth cycle.

After Lucy’s CA125 level dropped dramatically during the second treatment cycle, it had been steadily increasing since. She was also having leg pain and stomach problems. Lucy’s cancer  had become Taxol-resistant and platinum-resistant. The Taxol/Avastin treatments were cancelled and she was to start Alimta instead. Alimta is given once every three weeks in a very short infusion. Her first Alimta treatment was scheduled for January 12^th.

While Dr. Boente was examining Lucy, he checked her legs to determine why they were painful. He did a Homans’ test on both legs. This involved Lucy sitting at the edge of the exam table with both legs dangling over the edge. He then supported her ankle with one hand and started pushing her foot back towards her shin. The left leg was painful while the right leg was not.

Because Homans’ test not a good indicator of a deep vein thrombosis (DVT, a blood clot in a vein deep under the skin), Lucy was scheduled for an ultrasound on her left leg. Fortunately, Suburban Imaging is one floor down from Minnesota Oncology. She had an appointment for that afternoon. The ultrasound determined there was a clot in her left calf. So it was back upstairs so Lucy could get a Lovenox shot. Lovenox is an anti-coagulant drug. It is not designed to dissolve an existing clot. She was also given a prescription for Coumadin, another anti-coagulant. The Coumadin would start after a series of four daily Lovenox shots.

Coumadin is a fickle drug to properly dose. It requires fairly frequently blood testing. The test test is known as PT/INR, is more commonly called an INR test. It’s short for Prothrombin Time/International Normalized Ratio. The desired result should be between 1.0 and 2.0. Lucy’s was at 8.9 after two days on Coumadin. Her Coumadin was reduced from 5 mg to 2.5 mg until she was retested in two days. It was also note that her hemoglobin dropped below 7.0. So instead of getting her Alimta treatment on January 12^th, she had a blood transfusion on January 13^th. The Alimta treatment was rescheduled for January 18^th, and the next INR test was January 16^th.

The January 16^th INR test was better, 3.9. The Coumadin dose was cut again, down to 2 mg. When her right leg was examined, she was told to get an ultrasound on the right leg.

The ultrasound determined there was a clot in her right thigh. Her Coumadin was discontinued immediately and she received a Lovenox shot. The Lovenex shots will continue daily for a week. On January 25^th, she will see a hematologist. The hematologist meeting will determine her Coumadin therapy and try to determine the cause of her chronic anemia.

DVTs are incredibly painful. Lucy’s right leg ballooned up to twice its normal size but is slowly returning to normal. Walking is still very difficult.

There is some good news despite all the speed bumps she encountered. Lucy did receive her Alimta treatment on the 18^th. Unlike her previous rounds of chemo, Alimta is a quick one hour infusion given once every three weeks. Her previous round of treatments took between two and three hours each week except for her “off” week. She is not experiencing any side effects from it. Having to make fewer trips for chemo is going to be a big plus.

It’s been a frustrating start to the new year. We’re both trying to stay positive. We may not say it enough, but thank you for your concern, prayers, support and the love you have for Lucy.