Lori's
Journal
By Lori's Husband - JimKarma registration codes
Main Page - Journal Pages: 1 2 3 4 5 6 7 8 9 10 11Karma registration codes
Dec. 03, 2004 Lori is still healing. She's still having a fair amount of pain from the surgery, especially when she tries to roll over in bed at night, and she has a lot of pain when coughing too.Karma registration codes We went to see the surgeon yesterday and to get a chest x-ray. The surgeon was very impressed with how well she handled the operation, he said she has been an excellent patient and everything appears to be healing well. Karma registration codes We'll see the radiation oncologist next week to get set up for treatments, guess we'll know more about the possible effects then. She's scheduled to begin radiation on the 16th.Karma registration codes
We went to Mayo Clinic to get Lori set up for the radiation treatments. We felt a little better after talking with the radiation oncologist, he says there is only about a 5% chance that she will have to go on oxygen due the radiation, and statistically only about a 2% chance she'll eventually develop some other malignancy from it, though the reality for her is a little higher because of her young age. There is a possibility that some nerves could be damaged because of the way in which the tumor surrounds them, causing her to have some reduced movement in her arms. And there is a possibility of esophagus scarring and she would need to undergo an esophagus stretching procedure if that happens. She will likely get very tired and have a fair amount of pain, and may have difficulty eating after a week or two of treatments. The treatments will be everyday (m-f) for about 6 or 7 weeks and the initial dosage will be 6400 cGy (centigray) and may go up from there.Karma registration codes So that's what we know for now, she'll begin treatments sometime next week. They have a lot of configuration to do and will call us when they are ready for her.Karma registration codes Other than that she is doing pretty well, she's in great spirits and doing a few of her "normal" activities. She still has some pain during the day and quite bit at night, she tried stopping her pain meds for a couple of days but has had to resume them at night.Karma registration codes ________________________________________________ We finally heard from the radiation dept at Mayo about 4:30pm today, the calibrations are ready so she'll go in Monday afternoon for her first radiation treatment.Karma registration codes ________________________________________________ Lori began her radiation treatments yesterday.Karma registration codes After she was tattooed (they had to put a tiny dot on her to mark the area to be radiated) they took her back for her treatment. She said it was quick and painless. We went to talk with the radiation oncologist just after she had her treatment, the visit was somewhat mixed but we came out feeling a little more reassured about the side affects of the radiation.Karma registration codes The last time we'd talked in length with the doctor about the side affects he was very concerned with effects on her lungs. He is using a form of radiation called IMRT and said because of that and the fact that the surgeon was able to remove a lot of the cancer in that area that her lungs were no longer the great concern.Karma registration codes A fair amount of the tumor could not be removed from around her heart because it was so attached. The surgeon had first said that her pericardium would likely have to come out. When the surgeon got in to see it he decided not to remove her pericardium because of the way the tumor was attached to it. The radiation oncologist is now concerned about that area because as he told us yesterday, he is going to have to go after it very aggressively or the cancer there will eventually kill her. He is concerned with the radiation causing scarring on her heart, possibly leading to a fibrillation problem as a minor consequence and congestive heart failure as the major consequence with her needing bypass surgery.Karma registration codes He said the literature that's available for treatment options on thymic carcinoma recommends a total of around 5000 cGY (centigray) of radiation but that a couple of doctors have successfully pushed the envelope to between 6000 and 7000 cGY. That's what he plans to do with an end goal of 6400 cGY, and possibly a little more. She's scheduled for every week day at 10:30am for a total of 37 radiation treatments lasting through February 8th.Karma registration codes He said to expect her to become very weak as time goes on, and that she will likely have some problems eating because some of the tumor is still attached to her esophagus. I've been doing a lot of reading online, reading other Thymic Carcinoma and Thymoma patient's accounts of their radiation treatment and everyone seems to handle the side effects differently.Karma registration codes She's doing well right now, in great spirits and ready to take on the task ahead. It's almost time to head back for her second treatment.Karma registration codes ________________________________________________ Well, a new year has begun. We hope it's a little better than the last.Karma registration codes Lori has been doing well with her radiation treatments so far, not too many side effects and she has been on time to each of her appointments. She has had some upper arm and neck pain which I suspect is related to the radiation and the "reduced arm movement" effects the doctor had mentioned. She has also been experiencing some esophageal pain, we're not sure if that is related to the radiation, and she doesn't sleep well at night, she hasn't for a long, long time. She is taking two ativan to help her sleep most nights, it usually works, and she also takes a small amount of Oxycodone at night to help with her pain.Karma registration codes There are about 5 more weeks of radiation left and then we'll see if she needs more chemo. We're hoping that's not the case, she didn't handle it very well last time and is still suffering from some of the effects such as a strange rash that occurs every few days in various parts of her body, constant tingling in all of her extremities, hair loss, and we feel her bone marrow may have been compromised to some extent making it less able to handle additional chemotherapy.Karma registration codes ________________________________________________ Lori is in the middle of her 4th week of daily radiation. She has been extremely fortunate so far with the side effects, her only side effect we believe has been some exhaustion.Karma registration codes She is still suffering some side effects from the chemo. Her fingers and toes constantly tingle, as though they are going to sleep. It drives her nuts sometimes because it doesn't stop. We believe it may be due to one of the chemo drugs called Cisplatin. She breaks out in a strange rash (whelps) over various parts of her body every few days, it seems to move around. Her hair is coming back, about an inch in length. She still has quite a bit of pain at night and needs her meds to sleep. Otherwise, she's in good spirits and not feeling too badly.Karma registration codes ________________________________________________ We went to see the oncologist yesterday.Karma registration codes The oncologist told us that Lori will have to undergo more Chemotherapy, and fairly soon. It hit her pretty hard, she was really hoping it wouldn't be necessary, out of all the treatments and the surgery it's the chemo she fears the most. He told us that pathology had revealed two separate tumors, both still having active Thymic Carcinoma cells, and there was a lymph node present that was involved by metastasis.Karma registration codes She has been running a fever since last Sunday, we thought it was a virus at first, but now it appears more likely to be a blood infection or possibly her blood count has dropped again due to the radiation. We spent the entire day at the clinic yesterday getting tests done. We'll know today if it's her blood count, we are supposed to call them later today. The doctor put her on an anti-biotic just in case and said if her fever doesn't stop by Sunday to call him, she may have to go back in the hospital.Karma registration codes The next chemo treatment will likely begin within a couple of weeks. It will again be a combination chemo plan but this time she can't take Cisplatin...it caused some nerve damage from the last round of chemo (the constant tingling in her fingers and toes). We're not sure if they will try to replace it with something else. He wants to give her 3 more rounds (9 weeks), but the doses will be smaller this time since she had such a rough time with it before. If she doesn't tolerate it very well he'll stop. One thing that really upsets her is that her hair was just starting to come back nicely.Karma registration codes The doctor said he doesn't want to release her to go back to work until mid-June and said she really needs the time to recuperate. She had talked to her boss about coming back and her boss is planning to make her the project manager (a promotion of sorts)...unfortunately the home office is pushing her boss to replace her. Lori has been there 17 years and is a model employee. They should give her a break. She received her last paycheck from work about 3 weeks ago and we are waiting on her long term disability to kick in. Karma registration codes ________________________________________________Karma registration codes
Well, we called the clinic about 2pm Friday to get the results. They said they would call back and never did. Surely they would have made more of an effort to call if the test results were not good. They usually call back after 5 when they've seen all their patients. We waited until 9pm then went to bed.Karma registration codes Lori was still running a fever this morning, about 101.6. But she's been taking Tylenol all day and has not been running a fever since this morning. So, we're not sure if it may just be the Tylenol. If she still has a fever in the morning we'll go to the clinic, she doesn't want to go to the hospital tonight because she fears they will admit her...if she has another blood transfusion she wants it to be outpatient.Karma registration codes ________________________________________________ We talked to the doctor yesterday, he said that all of her tests came out fine, though her blood count is a little low and he may just give her a shot of Aranesp for that.Karma registration codes He thinks that her low grade fever may be due to side effects of the radiation so he told her to just keep taking her antibiotics for now and keep an eye on her temperature, if it goes above 102 we'll need to do something different.Karma registration codes She goes for a CT
scan and an echocardiogram this week, the doctor wants to make sure
her heart is still strong enough after the radiation to handle the Adriamycin
chemo drug. Then next week we'll go back to see him to discuss the next
chemo treatment. |
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This story was originally posted on April 5, 2007. Email lorijimh at comcast.net
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