Tag Archives: Alimta

Alimta is out, Hexalen is in

The Alimta is not working as well as it should and is discontinued. Her CA125 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 has 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 waiting 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 is not 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 at this time. 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.

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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 and 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. Weinshel was rounding for Dr. Thurmes and he was 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 straighten out. Fairview’s pharmacy is out of network so there is a higher co-pay.

Lucy will get a couple of 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 of days to decompress. For the first time in nine nights, she gets to sleep in her own bed. She won’t be awakened every two hours and won’t listen 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.

 

 

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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 to her low hemoglobin level.

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 nurse’s assistants in and out of her room. 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 to the 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 of 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.

scrub top

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.

snowy owl

Suzy brought along a new friend for Lucy

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Laissez les bons temps rouler!

One sees the French phrase in the title plastered all over New Orleans before Mardi Gras and it supposedly translates to “Let the good times roll”. 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 completely wiped out. Alimta is usually well tolerated, but it still can cause a bit of stomach distress and wipe out. That’s why she has to take the oral steroid dexamethasone twice a day for the day before, the day of, and the 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 eaten 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 is probably joint pain rather than tissue pain. The painkillers are still effective and she is using fewer of them.

I think I am 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.

While 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 Android phone and I can’t find an autocorrect equivalent, perhaps thankfully.

For those of you that are able, we hope you enjoyed a walk today. We hope Lucy is walking normally soon.

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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 got removed in her de-bulking surgery. The “tummy poke” is best for her, so I must 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!

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“Going Mobile”

Discharge day! We’re thrilled! The post title is an appropriate song by The Who. Today’s events went like this:

10:45 am: It sounds like the doctors are happier with her heparin blood level. The heparin IV could come out today. Because her Chromogenic Factor X test takes several hours, we will not know if she can go home. If she does stay, she will move to a different room on 8th floor. Fairview is stripping and cleaning the floors and performing maintenance checks on the rooms. “Hurry up and wait” is the theme for today.

2:00 pm: The expectation of a hospital stay is for the patient to focus on recovery. Fairview Southdale has been exceptional in that regard. Certain administrative obligations pop up detracting from recovery, like dealing with the short-term disability people. “Benefits coordination” is an oxymoron in that company. Lucy got passed to three people so far and each of them asked the same questions. They were just as clueless after her surgery nearly two years ago.

3:00 pm: Lucy’s Chromogenic Factor X result was at the midpoint of her therapeutic range. Her Coumadin dose is set and she has her instructions. The IV lines are removed and she is dressed. Everything is loaded and she has her walker. All that remains is waiting for the pharmacy to fill her prescriptions.

5:30 pm: The pharmacy finally asked for her prescription insurance card. She has a new drug plan this year and the old information was still on file, and there always is a delay when painkillers are involved. Lucy is moving with more confidence after the IV tree went away. Her friend Diane called while I was loading the vehicle. Lucy also called her siblings during the wait. The sunset was nice.

6:10 pm: Lucy headed home wondering what sort of mess waits after me having full run of the house for the past eleven days. She didn’t cringe after touring the house, so I think I did all right. I think the chicken strip dinner I picked up for her at Dairy Queen also helped.

Our house is a rambler with a basement. The basement has a rec room, a laundry room, an office, a ¾ bathroom, and a storage area. The bedrooms are on the main level. One of the guest rooms is now an office for her. She doesn’t need to go downstairs until her leg is better. Most of the main level has laminate flooring. She is navigating the walker quite well in the house.

I picked up some of the wet wipe style washcloths hospitals use for cleaning up a patient in bed. I also picked up a couple of the shower caps that have the shampoo in them. Lucy does not have to worry about slipping in the shower.

Lucy’s next blood test is Thursday. Next week she will get a PET scan since it has been about a year since her last one, see Dr. Thurmes about her leg, and see Dr. Boente about her next Alimta treatment. There is a possibility she may need a break from chemo until her leg fully recovers. Even though her medical leave got extended until February 13th, she may need another week added. Her next assessment may not happen until after that date.

We’re happy being home and are grateful and humbled by the outpouring of love and support you have given us through this ordeal. Thank you!
I picked up some of the wet wipe style washcloths hospitals use for cleaning up a patient in bed. I also picked up a couple of the shower caps that have the shampoo in them. Lucy does not have to worry about slipping in the shower.

Lucy’s next blood test is Thursday. Next week she will get a PET scan since it has been about a year since her last one, see Dr. Thurmes about her leg, and see Dr. Boente about her next Alimta treatment. There is a possibility she may need a break from chemo until her leg fully recovers. Even though her leave was extended until February 13th, she may need another week added. Her next assessment may not happen until after that date.

We’re happy to be home and are grateful and humbled by the outpouring of love and support you have given us through this ordeal. Thank you!

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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 5th 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 2nd. The treatment moved to February 16th. Her body will get a little more chance to recover. Her white count 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 traveling. A “stay-cation” 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 got 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 could be done in bed and left a booklet detailing how to do the exercises. Lucy will 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 of 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!

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