I am happy to report that Mom is back home today, almost back to normal. Our friend Laura will be helping her as she gets resettled. She continues to get stronger, but will probably need some tweaking of her medicines when we see her cardiologist next week. Thanks to all for your prayers and words of encouragement!
Susan has now scheduled herself at Sammons Baylor for a treatment with doxil on Dec. 5. This will be preceded by some preliminary testing to ensure her heart is up to accepting this new drug, which can have heart related side effects. (She received a similar drug 12 years ago for her breast cancer.) The doxil is supposed to have minimal other side effects (mouth sores the main ones) and has a statistical likelihood of success of 40% in producing a response. It only has to be taken once a month. We will again appreciate your prayers for the success of this new chemo agent.
After thinking over the inputs from Wednesday Susan decided to cancel today's scheduled carboplatin treatment. She's still thinking over exactly what to do next, but is probably leaning towards doxil.
In the meantime, Mom continues to get stronger and stronger. Today she felt good enough to go out to lunch with the family, and even go with us to DFW airport to take David to his flight. Everything is on track for her return home on Monday.
Mom continues to make great progress! Today we took her back to her house for several hours alone while we went to Susan's doctor's appointment. She did just fine. We even persuaded her to use her cane as we stopped on the way back to our house to eat out at a Chinese restaurant, where she ate a good meal (for her). Her energy levels are clearly increasing as she adjusts to her new medications.
Susan:
We got a third opinion, and as one expects in these circumstances, it was different from any of the others. Whereas Dr. Munoz is a surgeon who does some chemo on the side, Dr. Gordon is mainly a chemo man who does some surgery. Here are his inputs:
* He is against using further platinum based treatments. He says that remissions become shorter as one does more platinum--as we found with Susan's last remission. He also thinks that Susan will eventually have a bad reaction to carboplatin even using the desensitization process.
* As contrasted to Dr. Munoz, he is not convinced the last surgery was responsible for her last remission. "It might have been the cisplatin, which would have worked even without the surgery." This is clearly a very controversial area.
* He says that Susan's eligibility for clinical trials (using new unproven leading edge treatments) are heavily restricted because of her past breast cancer. Most clinical trials want to be sure that the trial is for a particular cancer type. "How would they know if it was your breast cancer returning rather than the ovarian cancer?" This was not good news.
* On the other hand his examination showed that Susan has no "bulky disease" that he could detect. He is not alarmed by her high CA-125. "I've had patients with readings of 10,000 but no detectable disease. Different tumors give off different amounts of CA-125, so it's only a qualitative measure of the disease, not quantitative."
* He recommends one of the following agents, in the following order: doxil, gemzar and taxotere. Doxil would only require a half hour IV once a month with fairly limited side effects. He would recommend she start after Thanksgiving, since in his mind her disease is not critical at present.
These were valuable inputs, but tonight we are so overloaded with information that we will sleep on it, and then decide tomorrow whether to cancel Friday's all day carboplatin treatment. Stay tuned......
New Developments
Nelle: Mom had a scary episode last night. About an hour after taking her new beta blocker medication--which is a key component of therapy for congestive heart failure (CHF)--she began to have visual problems and lightheadedness. The room would appear dark, and then when it lightened up, she saw "purple flowers" superimposed on everything. In the meantime her pulse rate plunged to below 60. We were concerned enough to call her cadiologist. While talking to him, she suddenly improved and we decided to watch her closely and not take her back to the ER. Sure enough, she improved through the evening and was much better this morning. Once again we gave her the beta blocker after a good breakfast. This time she had just a minute of the visual symptoms, and then recovered. I searched the Internet for the online pamphlet for her medication. Sure enough, a rare, but significant side effect listed was "blurred vision." Also, the manufacturer warned that the drug should be taken on a full stomach. This was our major error last evening: she took the medication before supper. Today she seems much stronger and more like her old self by the minute. I think she's starting to adapt to all the new meds.
Susan:
After an email exchange with her current oncologist, it was agreed to start Susan back on carboplatin beginning a week from today (Fri., Nov. 22). This drug, you will recall, was the one she had a severe reaction to in Oct., 2000. As a result she has stayed away from it in favor of cisplatin. However, the latter is causing hearing loss, so it's no longer a choice. Based on work done at M. D. Anderson we (the doctors and us) are convinced that the desensitization approach can work for carboplatin just like it did for cisplatin. In a published paper on the subject the folks at MDA noted that if a woman is responding to platinum, she should continue to use it as long as possible since it tends to zap the cancer cells much more effectively than all other known agents. Carboplatin's advantage over cisplatin is fewer side effects, including less impact on hearing.
You will recall that last year at this time we were forced to change doctors because of a war between our insurance carrier and the oncology group we were using. That "bad news" became good news since it eventually brought us to Dr. Munoz and a surgery that literally saved Susan's life. Now the circumstances have been reversed, and the original (huge) oncology group is no longer at war with Aetna, and we are free to use them again. The recent less than favorable interaction with our current oncologist motivated us to look back at this group. We found there a leading expert on recurrent ovarian cancer who practices down at the Baylor Sammons Cancer Center. We have an appointment with him for a "third opinion" next Wednesday, just in time to change our treatment on Friday if necessary. We see this providential train of events as almost a mirror of last year, and to us is evidence of "all things working for good to them that love God and are called according to His purpose."
I am sorry to report that Susan's latest tumor marker has climbed to 403. This is almost a fourfold jump over the previous measurement. It is clear that topotecan is not working. This has been very upsetting to Susan and myself, and we are almost at a loss as to what to do next. We will appreciate your prayers.
I am happy to report that Mom was discharged from the hospital yesterday around noon. She is staying with us now, and except for a bit of weakness, seems much her old self. We are still adjusting to the new medications that her cardiologist prescribed. Thanks for all your prayers and wishes of support during this episode.
Today marked a significant improvement in Mom's condition. She was able to take two 400-foot circuits of her hall, using a walker with attached oxygen tank. In the afternoon the cardiologist gave his readout. She had a very mild heart attack that had probably been building for some time due to fluid collection around the heart and lungs. "I think she is very tough," he remarked, to which Susan replied: "yes, but also very sweet!" He is very confident that Mom should be able to resume her independent lifestyle after a few weeks of recuperation. Tomorrow, the oxygen will be turned off, and barring any unforseen complications, she should be released by Thursday.
Her day was capped off by a visit with her two great granddaughers (Susanna and Lydia). (Oh yes, and their parents also.) She walked from her room to the reception area to greet them, and sat in a chair quite comfortably for about a half and hour. She beamed as the girls charmed us all with their cute ways.
Thanks to all for your prayers and expressions of support.
Nelle:
Mom is now in room 242 at Baylor Medical Center in Garland. Visitors are OK. We are still waiting for the results of the echo cardiogram that they took this afternoon. We hope to see the cardiologist on his rounds tomorrow morning to get a prognosis. Today, Mom's blood pressure fell considerably below normal: probably because she has become more sensitive to the blood pressure medicine they are giving her. She is on a saline IV to raise it. Otherwise, her only restraint is her oxygen line. They have been able to reduce the flow rate indicating that her breathing problems are much reduced now that the diuretic has done its work. She is basically comfortable, but tired of being in bed. No more leg cramps now that her potassium is back to normal. We believe she will sit up in a chair tomorrow.
Susan:
Red counts just above minimum, and white counts OK. We will get tumor marker results on Weds. when we see the doctor.
Just got word from Susan who's at the hospital this morning that Mom is being moved from the ICU to a regular room. Tests confirmed a minor heart attack, but her condition is improving sufficiently that they no longer need to monitor her as closely. Will post a later update after I go down to hospital this afternoon.
This afternoon after a blood test Mom's doctor decided to move her to the ICU. It seems that she has had some sort of "cardiac event" over the last 24 hours which has weakened her heart muscle. As a result they want to monitor her carefully. At present (6 PM Sunday) her vital signs are good, she is lucid, and the treatment is substantially improving her breathing difficulties. The cardiologist says she will be in the ICU (Baylor Hospital in Garland) at least until Tuesday. At present only family members are visiting. We appreciate your continuing prayers for her recovery.
She told the following story to Pastor Dave during his visit today. She was awakened in the middle of the night with the distinct feeling of a hand lying on top of hers. She said the presence of that hand brought her great comfort and peace. When she opened her eyes, no one was there. She's sure that this was the Lord Himself reassuring her that He was with her.
Psalm 121
I lift up my eyes to the hills-
where does my help come from?
2 My help comes from the LORD ,
the Maker of heaven and earth.
3 He will not let your foot slip-
he who watches over you will not slumber;
4 indeed, he who watches over Israel
will neither slumber nor sleep.
5 The LORD watches over you-
the LORD is your shade at your right hand;
6 the sun will not harm you by day,
nor the moon by night.
7 The LORD will keep you from all harm-
he will watch over your life;
8 the LORD will watch over your coming and going
both now and forevermore.
This morning (Saturday) we discovered that my mom (Nelle, aka Grandma Tex) was having difficulty breathing. After conferring with various medical personnel we decided to take her to the ER at Baylor Hospital in Garland. There she was admitted with the preliminary diagnosis of "congestive heart failure." By giving her oxygen and a diuretic, they succeeded in improving her breathing substantially. Tonight she is feeling much better, but will stay in the hospital a few more days while they do further testing.
This was a hard day for Susan since she stayed with me throughout the long day. We arrived home from the hospital about 10:30 p.m. and she went immediately to bed complaining of a sore throat. This is a bad sign, since it's likely her white counts are down due to the 3 chemo treatments. We will appreciate your prayers for both Mom and Susan.
Susan was having quite a bit of discomfort on Tuesday BEFORE her treatment. This is a bit alarming since it should be her best day prior to being zapped by the chemo. Obviously, it makes us wonder whether the topotecan is being effective, and whether the cancer is continuing to grow, thus causing the discomfort. However, after Tuesday's chemo she has actually been feeling better, except for the usual "zoned out" feeling that is typical a day or two afterwards.
Monday she goes in to get blood drawn for the tumor marker test. On Wednesday, we see Dr. Mirtsching to see if the marker has gone up or down, and to determine what to do next. This is a critical time in her treatment. We appreciate your prayers.