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Has anyone had carboplatin and taxol treatment for uterine carcinosarcoma? Please share with me!

wingsoflight
Posts: 13
Joined: Jul 2009

I'am to start carboplatin taxol treatment in three days. Doctor changed plans. I would really appreciate hearing from anyone who has had this treatment. Thanks, Glenda

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

Glenda the taxol/carboplatin are the drugs most of us have received in 3 week cycles. Some of received 6 cycles in a row, and some of us had 3 cycles and then our radiation and then 3 more cycles of the drugs. Most of us have UPSC that have gotten this treatment. Some of us are finished with our treatments, and there are many others that are just beginning or in the middle of treatments, so you are not alone. We can try to answer any questions you might have. We all react differently to the treatments. Good luck to you.
I know you must be anxious about getting the first treatment. That fear of the unknown is so scary. You will make it through. In peace and caring. HUGS to you.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

There is TONS of good information and discussion on this Discussion Board on the carbo/taxol chemo you will be getting (and that I got as well as most of the others here.) If you want to read some of the past threads, you can type in 'chemo' or 'carboplatin' or any other Key Word into the Search box, and all of those discussions will come up. This Discussion Board is truly the most comprehensive resource of 'real time' information on the web, IMHO.

wingsoflight
Posts: 13
Joined: Jul 2009

Thank you for responding! I was diagnosed with a mixed mullerian tumor (uterine carcinosarcoma as I'am finding it is more commonly called) Had complete hysterectomy, the chemo approach was going to be cisplatin, ifofasamide. Then PET/CAT scan came back revealing 4 or 5 small tumors in the periotonetal (sp?) cavity. Thank God not in any organs. So the oncologist says this is the route to go now. Not thankful for the little tumors, but glad not to go into the hospital for the intense cisplatin/ifofasamide treatment. I will be doing this once a week for three weeks, one week off and repeat for three months. Is that common?
What was your experience the first week? Thanks again for responding.

Glenda

Katrinka123
Posts: 54
Joined: Jul 2009

I'm sorry the PET/CAT revealed small tumors (thankfully not in organs!) but like you, I am glad you won't have to do the C/I treatments in the hospital.

Thinking good thoughts for you that you will tolerate your treatments well!

-Kat

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

Hi Glenda, I had a similar diagnosis - same treatment, but a different schedule. I had 6 rounds, but they were every three weeks. The first time was difficult, but after that I was back to work the day after treatment. Your schedule seems a lot more intense. However, the chemo actually made me feel better because it shrunk the tumors, hence alleviating some of the pain. I do not have any lasting side effects from the chemo. Hair loss wasn't as big a deal as I thought it would be. I wore a wig to work. Now I stay with the short buzz cut - dyed it flaming RED - and get positive comments on it all the time. Never would have anticipated that!

Ro10's picture
Ro10
Posts: 1474
Joined: Jan 2009

Most of had the taxol/carboplatin one day every 3 weeks. Then we would repeat the cycle in 3 more weeks if lab work allowed. I was scared of the first treatment, as it was all unknown. I was afraid I would be nauseated during the treatment and for days after the treatment. None of that happened. They use medications before you get the chemo to help with the nausea. I also had medications to take for 3 days after the chemo. I did have an immediate reaction to the Taxol, but the nurses stopped the drug, gave me more premedication and ran the Taxol at a slower rate. The chemo nurses are very knowledgeable and watch you carefully. You also have a call bell to use if you need anything. The nurse also showed me where to turn off the IV pump if I felt anything different. I never had any problems with nausea during all of my chemo treatments. I have a sensitive stomach, so I was thankful for that. Actually I never had any kind of problems with my first three chemo treatments (after I got home). I would have wondered if they gave me something, but my hair fell out, so I know they did give me something. Losing my hair was not as big of an issue as I thought it would be. I never have lost my eyebrows, which I am surprised. I miss my eyelashes more than my hair. Good luck with your treatment. Glad you won't have to be in the hospital for your treatment. It is much nicer going home at the end of the day. I am sure you will feel better after the first one is over. In peace and caring. HUGS to you.

Auntie Shelly
Posts: 10
Joined: May 2009

Hello. I am on the carbo/taxol course right now. My schedule has been 3 times a month for six months with the first week including the carboplatin. After the carboplatin week I always have horrible constipation so try to get ahead of it with stool softeners.....yucky subject, I know but the nurses always tell me to be proactive. The carbo also is worse on my taste buds! The 2nd week is Taxol only for me but with the added bonus : ( of the shot for white blood cells (starts with a N and I always forget the name). My chemo nurse told me to take 1 Claritin and 1 Tylenol that night after getting the shot to try to lessen the bone discomfort. I do it every time but I seem to have a delayed reaction to the shot and don't feel the bone discomfort (mostly in the hips and legs) for a few days and then I take Motrin. The 3rd week is Taxol only and then WOO HOO a week off! Compare notes with the people in chemo....it really helps to talk to other people who are going through the same thing, although I only found 2 other people at my "chemo lounge" who have the same schedule as me. Most others are on a 1 time every 21 day routine and some with a combination of chemo and radiation. I have had a lot of problems with UTI s and have had to have 2 blood transfusions but this week is my last week of my 6 months! HOORAY! If my scans go well I will get to go on the 1 time every 21 day schedule for the next 9 months which still feels like a long time but should be much easier to deal with and it will be Taxol only. You can get through this! My fellow chemo loungers and this great group really helped me through my low times.....
I wish you only good days!

wingsoflight
Posts: 13
Joined: Jul 2009

Thank you all for your responses; RO10, linda procopio, lociee, aunt shelly, and Kat!, so good to hear from you again. Thank you all for your stories, information, support, and love.
It is still amazing to me how great and generous people are on this site! It was good to hear that some of you don't get such severe nausea, and that life might be sort of normal.
As the days go by and chemo is about to start I am getting more anxious. I have had allergic reactions to many things in my life, so it was also good to be reassured about the chemo nurses. Your humorous responses really help too! I find my my humor is getting stranger every day!!
I also am doing alternative medicine now, acupucture, herbs, and homeopathic treatments.
I have a wonderful Chinese Medicine practictioner who is 72, been practicing for 50 years, and she doesn't even look 50! Have any of you read the book, "Integrative Oncology" written by Andrew Weil, MD, and Donald Abrams MD, Chief of Oncology at San Francisco General Hospital.
Much great information.
Kat, thanks again for your responses when I thought I was going to be doing cisplatin/ifosamide. That sounded tougher. I am glad I will be able to come home to my family, my plants, and my little dachsund, Ruby Rose.
If any one has any more specific or general memories or hints about the carbol/taxol treatment, nothing is unimportant to me right now.
All blessings, peace, good health and hugs to you all!
Glenda

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

I'm so glad my daughter has been with me at my chemo treatments. The first time I was very scared. Although I think I asked pertinent questions and appeared to be as much in control as possible, the fact is that I can actually remember very little. My daughter is truly the one who has been on top of things the day of my infusion treatments!

At my first treatment the nurse also showed me how to clean and flush my chest catheter. A few days later I realized that I had been TOLD about it and had been SHOWN what to do. I had a white paper bag of supplies, but I could REMEMBER NOTHING about specifically what I should do. I called my daughter and she came over to show me what to do.

Each time I fall asleep for about the last hour or so of the infusion. I have had NO PROBLEMS during the infusion treatments themselves. The nurse checks on me with great frequency and is only a "call-button" away. We have never needed to call her. The last two times I have picked my daughter up on the way to the appointments. I am "out of it" enough afterward that I would feel unsafe driving myself home. The "out of it" feeling is due to the benedryl-type medication given at the beginning of the infusion. I sit in a comfortable recliner in a room of my own at my doctor's office. A warm blanket is available if I want to use it. My infusion treatments are always in the morning. It takes about 3.5 hours. Back at home I eat a light lunch with a big glass of water and then lie down for a nap. I sleep a lot the rest of that day. By the next day I am less sleepy but I am still tired.

Please do not hesitate to ask us questions. We'll be thinking of you today.

HUGS FROM EVERYONE.

Sally

wingsoflight
Posts: 13
Joined: Jul 2009

Thanks for responding Sally. How far along in your treatments are you now? How long does your tiredness last when you get home? I know you said you were still tired the day after, but does it stay at the same level all week, or do you rebound some before your next treatment. I am supposed to have a treatment once a week for three weeks, then a week off, to be repeated for three months. Is that similar to yours? How about your appetite? Does food still appeal to you? Are you taking supplements, do they go down OK? It was good to hear that you didn't seem to have any bad effects except for sleepiness during the infusion.
It is so good that your daughter has been able to go with you. My husband will be with me this first one for sure. Does your mind fog clear up after a few days? I know I am asking a lot of questions, but my 1st treatment starts the day after tomorrow. I am trying to be real positive, but I have my down moments and anxiety still. I guess that is normal.

Many blessings and hugs, Glenda

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

Hi, Glenda!

Therapy: I am near the end of my third round of carbo/taxol. Like most of the others in our “group” I have one infusion every 3 weeks of both drugs, first one is infused, then the other. At the very beginning I receive benadryl and I think another medication to ease the whole process. Then I have a prescription for three days of Ondansetron 8 mg for nausea and one for three days of the corticosteroid Dexamethasone 4 mg. I also have filled but not taken a prescription for Promethazine 25 mg for nausea and vomiting. I have taken the first two medications for the 3 days following the infusion. I have experienced a bit of nausea after the 3 days, but it was not severe enough to take the third medication. For me (remember, each of our bodies is different) I am at the edge of constipation by about the third day. I am already on a high fiber diet to control my diverticular disease. Then suddenly on about the fifth day I have extreme diarrhea lasting 2 or 3 days. For the first time in my life I bought and use Loperamide (generic for Imodium) and find that it works very well for me. I take it for the duration of the diarrhea.

Fatigue: Day by day I become less tired. I go outside every day and remove the spent blooms from my 12 flower gardens. Then I come inside and sit and sweat for about 30 minutes. Then I go out and take photos of my favorite blooms of the day. Then I come in and sit and sweat for another 30 minutes. Then I go out with my clipboard and chart to count the blooms. Then I come in and sit and sweat for 30 minutes! I try to do all of this before 10 am when the temperature usually hits 80. I find that I have a greatly reduced tolerance for heat. I am hoping to clean up my flowerbeds in September or October (maybe November) when the weather moderates. My gardens are still filled with hundreds of dried iris stalks and lots of large brown and spotted iris leaves. Some weeds have turned into trees or bushes! Now that the daylily bloom season is ending, there are many dead daylily bloom stalks and leaves. There is still an area around my navel that hurts (post-hysterectomy) if I bend forward. I hope that pain will be gone within the next month or so. Due to some prior knee surgery I am unable to squat, so I rely on being able to bend over to garden.

Mental Fog: The mental fog is the worst the first week. By the second week I am thinking more clearly but still not clearly enough to do my job at the office. It helps if I just try to stay focused on one task at a time. It is impossible for me to prepare a meal with more than one dish that has ingredients added one by one. I can’t, for instance, check on laundry while I am cooking because I lose track of the fact that I’m cooking. When I do any kind of cooking, I stay on task until the entire project is completed. When I try to work at the office I do things like write the checks, make photocopies, put them into envelopes, then forget to mail them. When new bills come I can see that the checks were written. So I have to figure out what I did with them. This kind of thing is a problem at home, too. I have said, “I’m sorry. I forgot.” more times in the past two months than in all of the rest of my life up to June of this year. I keep a clipboard on the kitchen table. I used to misplace it regularly until I decided on the rule that it stays on the table and information is brought to it. On the left side I have a TO DO list. This includes chemo appointments, telephone calls to make, and so forth. On the right I have an ongoing shopping list. My husband does all the grocery shopping now to keep me from being exposed to people with infections. Before my chemo started I tried to stock up on staple items I knew he would have difficulty locating at the store. My daughter or son-in-law pick up birdseeds and swimming pool supplies for me. MOST OF THE PEOPLE IN OUR GROUP DO NOT SEEM TO HAVE EXPERIENCED THIS LEVEL OF MENTAL FOGGINESS. By the third week I feel that I am ABOUT ready mentally to return to work. Then it’s time for the next round of chemo!

Appetite: No problems! My weight has stayed about the same, though I may have gained a pound or so this round. My gyn/onc has encouraged me to eat more protein.

Supplements: I take a multivitamin/multimineral for seniors, calcium 600 mg +D, Selenium 200 mcg, B-complex which includes 400 mcg folic acid.

YOUR THERAPY: I am interested to learn why you are receiving one infusion every week with a week off after three. I wonder if it is easier on your body that way or if it might be better to help maintain a certain level of medication in your body. You may feel too nervous to ask questions this round, but after you are not so frightened, I would be interested in knowing reasons it might be preferable to have weekly chemotherapy. Will you be given both drugs at the same session or only one of the two at each session? Do you have some kind of chest port/catheter? I do. How often will labs be done to check how your body chemistry is doing?

Well, I better start getting ready for my visit with the rad/onc this afternoon. I think he will be doing an internal exam (yuck) so I need to have a shower!

Please keep us posted! HUGS, HUGS!

Sally

wingsoflight
Posts: 13
Joined: Jul 2009

Hi Sally - Kansas Girl!
I really like the great picture of you in your flower garden. Did you say 12 flower gardens!? Wow! My husband and I like to garden too, I bet your gardens are wonderful.

Thanks so much for all of your information. It helps to know all the details of other's experiences, even though, as you said, we are all different in our reactions. It is interesting, it seems many others have the once every 21 days chemo as you have. Though I have had responses from at least one other person who has it as I am scheduled; once a week for three weeks, a week off, and repeat for three months. The primary reason, as I can gather from my doctor, is that it seems to be easier on the individual. And I am happy to report after my 1st treatment four days ago(!), that it was easier then I thought it was going to be. I had no adverse reactions during the treatment, except for sleepiness for a while as you reported I did have both taxol and carboplatin after the initial "cocktail" of cortisol, anti-nausea medicine, and benedryl. I asked to try without a port because the doctor and the chemo nurse thought my veins were "good enough".

I was pretty "wound up" from the cortisone for a day after, and seemed pretty "foggy", saying words backwards, etc. Four days out now, that does not seem too bad. Nausea never got bad enough to take medication. I did try to keep small amount of food in my stomach as nurses suggested. I had strange little shooting pains here and there for no apparent reason.
I walk twice a day, as I was always a walker before. That might be helping constipation. Happy to report no diarrhea so far. Bouts of tiredness, but I have been able to read books the last few days.

I have been told that going into the third week I will probably feel things more! Well, I am just living one day, one moment at a time right now, trying not to think too far ahead.
I have had my 5 year old grandson over, as he is a joy to be around. But yes, I am tired afterwards.

Lab work will be every other week. My stomach has healed quite well after the hysterectomy, but I did have robotic surgery. Did you? Besides vitamins similar to yours, I am also taking a protein supplement for the immune system that really seems to help. It is called KPAX, distributed from a Northern Calif. lab close to where we live. Many aids patients use it as well. You can look it up online. A naturalpath doctor recommended it to me, and I really noticed a difference when I began taking it a month before chemo.

Well, its getting late here. Keep me posted, are you about at the end of your treatment?
Thank you very much for taking the time to write to me. Bless you and your garden.

And many hugs to you as well! Glenda

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

Hi, Glenda!

I'm so glad to hear the chemo is going well for you and that your abdomen is healing well, too. I had the long open incision and still have a small area around my navel that hurts when I bend forward or in bed if I roll onto my stomach.

Yes, I really have 12 flower gardens which have been sorely neglected this year! This is a good opportunity to determine my toughest plants! Here in late August the main idea is to just keep the gardens as green as possible and wait for the chrysanthemums, asters, and sedum to flower in September as the temperatures start to moderate. I have a few irises that occasionally rebloom, too. Several years ago we had a large bouquet of irises at Thanksgiving time just as we had our first freezing weather.

I begin 4 rounds of vaginal brachytherapy tomorrow morning, and chemo #4 of 6 on Wednesday. The last two chemos will be at 21-day intervals if my labs keep being OK. I had my blood drawn Friday, so I will have my recent lab results on Tuesday when I see the oncologist.

I will look up that protein supplement you recommended. Thanks.

We are expecting our first (and probably only) grandchild around Thanksgiving. We thought there would be none, so we are thrilled!

Thanks, too, for telling me about the "theory" of your treatment protocol. Very interesting! I hope your infusions continue to be without incident! Please keep us posted.

Hugs, hugs! Sally

Katrinka123
Posts: 54
Joined: Jul 2009

I hope you continue to tolerate your treatments well! It's so scary to start, but once you do - you get to work on the countdown! All great wishes for you!

-Kat

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