She did get quite a bit better during her first break. She wasn't able to completly come off the morphine because the chemos had sent her body into menapause and the doctor couldn't give her anything to help. A bit of morphine at night kept the hot flashes down and allowed her to get some sleep. She got to the point where she didn't need any of it during the day. She wanted to do some extra things while she was feeling better, like travel and see her family but her boss refused to give her any time off because she had taken off so much time for chemotherapy. The one thing she was able to do was to get some professional pics done. She loved professional pictures and we hadn't had them done since our wedding. The picture is of Dee and I a few months after she had finished chemo (she is in the front). She was happy and we were trying to live as full of lives as we could during that time.
Showing posts with label adult rhabdomyosarcoma. Show all posts
Showing posts with label adult rhabdomyosarcoma. Show all posts
Tuesday, July 13, 2010
After Chemotherapy
Life doesn't just go back to normal after chemotherapy is over. In Dee's case she still had weekly labs for the first month and she had monthly CT Scans for the first couple of months. The doctors were just waiting for the rhabdomyosarcoma to come back and since they couldn't find where it started, they were at least hoping to catch it when it first spread to the lymph nodes. Then there was the chance that it wouldn't spread the same way that it had the first time so they were just trying to keep an eye on everything. Dee's boss wanted her to start back at work as soon as the chemotherapy was over. She (her boss) kept harrassing her but the doctor's knew she was really weak and that her system was very weak so it would've been devestating if she had gotten a cold or worse. Finally Dee's boss didn't give her choice. Even though she was out because of doctor's orders, her boss said come back now at least part time or you won't have a job. So working with the doctor's they set up a three days a week schedule for four hours a day. Dee was still on morphine for pain and she was still pretty weak so she couldn't drive herself back and forth to work. After a couple of weeks her boss demanded that she move to five days a week at four hours a day or else she would be fired. Then her boss got mad at her for having to go to CT Scans or any other type of doctor's appointment during that four hours. It was because of her boss's refusal to allow her to go to doctor's appointments during work that Dee's cancer went to stage four in the first place and I was having a hard time dealing with her boss holding her job over her head in an attempt to keep her from her appointments again. She liked everyone at work besides her boss and on her good days, she liked being able to work again plus she knew that the insurance was vital so she kept on working.
She did get quite a bit better during her first break. She wasn't able to completly come off the morphine because the chemos had sent her body into menapause and the doctor couldn't give her anything to help. A bit of morphine at night kept the hot flashes down and allowed her to get some sleep. She got to the point where she didn't need any of it during the day. She wanted to do some extra things while she was feeling better, like travel and see her family but her boss refused to give her any time off because she had taken off so much time for chemotherapy. The one thing she was able to do was to get some professional pics done. She loved professional pictures and we hadn't had them done since our wedding. The picture is of Dee and I a few months after she had finished chemo (she is in the front). She was happy and we were trying to live as full of lives as we could during that time.
She did get quite a bit better during her first break. She wasn't able to completly come off the morphine because the chemos had sent her body into menapause and the doctor couldn't give her anything to help. A bit of morphine at night kept the hot flashes down and allowed her to get some sleep. She got to the point where she didn't need any of it during the day. She wanted to do some extra things while she was feeling better, like travel and see her family but her boss refused to give her any time off because she had taken off so much time for chemotherapy. The one thing she was able to do was to get some professional pics done. She loved professional pictures and we hadn't had them done since our wedding. The picture is of Dee and I a few months after she had finished chemo (she is in the front). She was happy and we were trying to live as full of lives as we could during that time.
Tuesday, July 6, 2010
5 Months of Chemotherapy
After spending most of June in the hospital Dee still had 5 months of chemotheraphy to look forward to. The weeks rotated depending on the cycle so that on some weeks she only had to go in for chemotheraphy on Monday. Then there were the hard weeks that she had to have chemo everyday but they were typically followed by a week where she only had to go in for blood tests. Depending on which of the four chemos she was getting some weeks she felt almost normal.
One of the drugs that made her sicker than any of the chemotheraphies was actually supposed to protect her stomach from one of the chemos. The first time she had to take it at home in pill form, she was sick within the hour. She spiked a fever and she couldn't keep anything down so she couldn't even take the next pills that she was suppose to have. Since she had just gotten out of the hospital the fever and throwing up really freaked us out. We went to the ER and they ran all these blood tests and cultures to see what was wrong. She ended up having to spend a few days in the hospital because the chemo had lowered her white cells again. They couldn't find anything so I started researching this new pill she had taken. I found out that it was being tested as a chemo drug in Europe which told me that it was a pretty nasty drug. Also the rare side effects were fevers and vomiting. After the trip to the ER happened the next time, we got the doctors to give her the drug intravenously which helped because she no longer had the vomiting. By then we also knew what over-the-counter meds the ER used to fight the fever so we just kept a log of her temperatures and gave her the meds at home. She hated going to the ER and being stuck in the hospital so this made her feel a lot better.
The chemotheraphy didn't get any easier as time went on, it got worse. Her bone marrow bounced back real good most weeks but every so many weeks her red blood cells would get so low that she had to have a transfusion. She had to have the white blood cell shots every couple of weeks and those always caused her a lot of pain as the bone marrow increased white blood cell production.
One of the drugs that made her sicker than any of the chemotheraphies was actually supposed to protect her stomach from one of the chemos. The first time she had to take it at home in pill form, she was sick within the hour. She spiked a fever and she couldn't keep anything down so she couldn't even take the next pills that she was suppose to have. Since she had just gotten out of the hospital the fever and throwing up really freaked us out. We went to the ER and they ran all these blood tests and cultures to see what was wrong. She ended up having to spend a few days in the hospital because the chemo had lowered her white cells again. They couldn't find anything so I started researching this new pill she had taken. I found out that it was being tested as a chemo drug in Europe which told me that it was a pretty nasty drug. Also the rare side effects were fevers and vomiting. After the trip to the ER happened the next time, we got the doctors to give her the drug intravenously which helped because she no longer had the vomiting. By then we also knew what over-the-counter meds the ER used to fight the fever so we just kept a log of her temperatures and gave her the meds at home. She hated going to the ER and being stuck in the hospital so this made her feel a lot better.
The chemotheraphy didn't get any easier as time went on, it got worse. Her bone marrow bounced back real good most weeks but every so many weeks her red blood cells would get so low that she had to have a transfusion. She had to have the white blood cell shots every couple of weeks and those always caused her a lot of pain as the bone marrow increased white blood cell production.
Still she was in great spirits when her last day of chemo came along and it was a good day for her. Here is a picture of us on her last day of chemo in 2006. I had broken four bones in my foot the day before which is why I'm in a wheelchair.
Monday, April 13, 2009
Chemotherapy
In all of Dee's CT and PET scans, they have never found a tumor so there wasn't anything to surgically remove. The lymph nodes had only been removed to biopsy and it just spreads to the lymph nodes not start there. The only course of action was chemotherapy (not counting the person in Mexico that had some miracle cure that her sister wanted to send her to). They started by cautioning us on the chemo. They only had the chemo regimen that they give children for this cancer to go from and they told us that they had never given it to an adult before. They said that no adult was expected to survive the chemo but it should give her 6 months to 2 years more on her life. Dee was up to trying it so they started the treatment immediately.
Her treatment started on Wednesday June 14th with a dose of Vincristine. Vincristine is considered a plant alkaloid chemotherapy and it is used in adults to fight a number of different cancers and blood disorders. She was on so many different chemos at once we can't say for sure what side effects were from what drugs but her hair started falling out almost immediately so we think the Vincristine helped. Vincristine attacks cancer and good cells alike by stopping cells from dividing and spreading.
Let's take a moment to explain some terms that I will using a lot when I talk about Dee's chemo: Cycle - All of Dee's battles have involved chemotherapy that is given in cycles. Day 1 of Dee's first cycle started with the Vincristine mentioned above. A cycle typically includes certain days of chemos and the certain days off of chemo. Dose - A dose is just a treatment of chemo. Some doses were simply pushed in to the blood stream with a syringe. Other doses were a bag of chemo that ran into the blood stream over a longer period of time. Chemotherapy drug names - Almost all drugs have multiple names, in this blog I will be using the names that we got familiar using.
On day 1 of cycle 1 Dee also got a dose of Cytoxan and a dose of Dactinomycin. Cytoxan is often used in adults to treat breast cancer, leukemia, and ovarian cancer but it is also used with many other cancers. Cytoxan is considered an alkylating agent and it interferes with the resting phase of a cell's cycle to prevent cell division. Dactinomycin is used to treat many different types of sarcoma cancers in adults. It is also considered an alkylating agent and it also works to stop cells (cancer and normal) from dividing.
Day 8 of cycle 1 was for another dose of Vincristine and Day 15 was for yet another dose of Vincristine. Cycle 1 ended with a 5 day break.
Cycle 2 started at the beginning of July with a dose of Vincristine and a smaller dose of Cytoxan. It was also the introduction of a new chemo drug, Topotecan, that was going to rotate cycles with the Dactinomycin used in cycle 1. Topotecan is a bit different because it is classified as a topoisomerase 1 inhibitor. It is typically used in adults for resistant forms of ovarian cancer and some types of lung cancer. Small doses of Cytoxan and Topotecan were also given on days 2, 3, 4 & 5 of cycle 2. Then Vincristine was given again on days 8 & 15. Cycle 2 ended with a 6 day break.
Cycle 3 was a repeat of cycle 1 and cycle 4 was a repeat of cycle 2. These cycles continued to rotate until the end of cycle 7 when the doctor stopped the chemotherapy.
These brutal cycles of 4 different chemotherapy drugs is what almost every child that has rhabdomyosarcoma goes through although the number of cycles varies in every case.
Her treatment started on Wednesday June 14th with a dose of Vincristine. Vincristine is considered a plant alkaloid chemotherapy and it is used in adults to fight a number of different cancers and blood disorders. She was on so many different chemos at once we can't say for sure what side effects were from what drugs but her hair started falling out almost immediately so we think the Vincristine helped. Vincristine attacks cancer and good cells alike by stopping cells from dividing and spreading.
Let's take a moment to explain some terms that I will using a lot when I talk about Dee's chemo: Cycle - All of Dee's battles have involved chemotherapy that is given in cycles. Day 1 of Dee's first cycle started with the Vincristine mentioned above. A cycle typically includes certain days of chemos and the certain days off of chemo. Dose - A dose is just a treatment of chemo. Some doses were simply pushed in to the blood stream with a syringe. Other doses were a bag of chemo that ran into the blood stream over a longer period of time. Chemotherapy drug names - Almost all drugs have multiple names, in this blog I will be using the names that we got familiar using.
On day 1 of cycle 1 Dee also got a dose of Cytoxan and a dose of Dactinomycin. Cytoxan is often used in adults to treat breast cancer, leukemia, and ovarian cancer but it is also used with many other cancers. Cytoxan is considered an alkylating agent and it interferes with the resting phase of a cell's cycle to prevent cell division. Dactinomycin is used to treat many different types of sarcoma cancers in adults. It is also considered an alkylating agent and it also works to stop cells (cancer and normal) from dividing.
Day 8 of cycle 1 was for another dose of Vincristine and Day 15 was for yet another dose of Vincristine. Cycle 1 ended with a 5 day break.
Cycle 2 started at the beginning of July with a dose of Vincristine and a smaller dose of Cytoxan. It was also the introduction of a new chemo drug, Topotecan, that was going to rotate cycles with the Dactinomycin used in cycle 1. Topotecan is a bit different because it is classified as a topoisomerase 1 inhibitor. It is typically used in adults for resistant forms of ovarian cancer and some types of lung cancer. Small doses of Cytoxan and Topotecan were also given on days 2, 3, 4 & 5 of cycle 2. Then Vincristine was given again on days 8 & 15. Cycle 2 ended with a 6 day break.
Cycle 3 was a repeat of cycle 1 and cycle 4 was a repeat of cycle 2. These cycles continued to rotate until the end of cycle 7 when the doctor stopped the chemotherapy.
These brutal cycles of 4 different chemotherapy drugs is what almost every child that has rhabdomyosarcoma goes through although the number of cycles varies in every case.
Tuesday, April 7, 2009
Current Situation on 4/7/09
Dee has just finished her third battle with rhabdomyosarcoma (her last chemotherapy treatment was on March 5th) and this third battle has really left her wiped out. Some days she seems to be getting better and we continue to have hope that she will make it.
We are starting this blog to share the whole experience to date for other adults that are dealing with adult rhabdomyosarcoma.
We will also be posting a donation button on this site for anyone that can and would like to donate to help us cover our financial difficulties. This third battle has left us in financial ruin along with the fact her cancer had taken her job from her and the economy took mine from me. After this post I will try not mention financial difficulties (some days it is harder) but I wanted to at least make one mention to why it is there. Please enjoy the blog and learn from it even if you are unable to donate, this is only a choice we are offering because of our great need at this time.
Thank you, we hope that this blog provides information as well hope.
Jen and Dee
We are starting this blog to share the whole experience to date for other adults that are dealing with adult rhabdomyosarcoma.
We will also be posting a donation button on this site for anyone that can and would like to donate to help us cover our financial difficulties. This third battle has left us in financial ruin along with the fact her cancer had taken her job from her and the economy took mine from me. After this post I will try not mention financial difficulties (some days it is harder) but I wanted to at least make one mention to why it is there. Please enjoy the blog and learn from it even if you are unable to donate, this is only a choice we are offering because of our great need at this time.
Thank you, we hope that this blog provides information as well hope.
Jen and Dee
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