Hello, I was diagnosed several weeks ago with Uterine Carcinosarcoma. It seems my cancer was caused by Tamoxifen, which I had been taking for close to 6 years after Breast cancer. I am 59 years old and had been feeling pretty good since my breast cancer fight. That was a battle that I was confident I’d win. This cancer has me scared. I was lucky enough to get into UAB and Dr Rebecca Arend did my hysterectomy. Birmingham is a 12 hour drive for us, but I was so grateful to get in! I was stage 3, as there were 2 nodules outside the uterus that had cancer in them. Dr Arend has consulted with my oncologist here at home so that I can receive my chemo locally. I will be getting Carbo- platin and Taxol. Taxol is a drug I had an allergic reaction to before, so my infusion days will be long! I’m hoping that these drugs are effective and will kill the cancer that’s still inside me. I’ll have a scan and see Dr Arend after chemo and every 3 months after. I am glad to have found this website. It is comforting to read other stories and be able to reach out to others who have this disease. I hope to keep in contact with anyone who is on here regularly. Thanks for listening!
Hi, Lisa! I also had uterine carcinosarcoma. It is a scary disease! It is also great to know there are other women out there fighting the same battle - maybe in different ways, but still fighting the same battle. I think it is important for us to share what we learn and support each other as we go to battle against this disease. It is exciting, too, to know there are a group of people doing their best to study this disease to learn how to develop a cure.
Thank you for sharing your experience! Look forward to your updates!
Thanks for your reply! I hope that you are doing well. I get my port on Wednesday and start chemo on Thursday. Not looking forward to going through chemo again but I’m praying that it works!
How did you do through chemo? Did you work as usual? Did you get any neuropathy? I’m lucky my bosses let me make my own schedule and I can also work from home. Hope to hear from you again!
Hi, Lisa!! So glad you can take your treatments at home! I think my support group helped me as much as the medicines!!
I went through cheno fairly easily. I was very blessed by that. I did not have the nausea struggles or the joint pain I had been worried about! I did lose my hair - I cried about 15 minutes and then moved on! I did deal with fatigue, but I did what my doctor told me to do - sleep if you want to sleep and don't worry about it! I was very careful to drink the water they told me to drink. I am not good with keeping up with amounts, so I bought bottled water. I set out the 5 bottles I was to drink a day and just kept drinking until they were gone. I think that I par of what helped me through the chemo - the water.
I did not work during chemo because I am a teacher. My doctor was concerned that I might get sick and children tend to have more illnesses than adults. My first few treatments did not cause me much problems and as soon as the week of isolation (because of immune suppression) was up, I was out and about. I've never one to be sitting at home for a long time! As the treatments went by, I let my body tell me when to get out. If I felt tired and vulnerable, I just stayed at home longer.
I did get neuropathy in my feet. Some of that feeling has started coming back - after a year after treatments stopped. I don't know if I will get it all back or not, but I am thankful for what I am getting back!!
Please keep me posted on how you are doing and know there is people out here listening!
Well, I got my port and had my first chemo this past Thursday. I did not expect any side effects from the first dose, based on my experience from 7 years ago. Unfortunately, it kicked my butt! I had severe knee pain for 2 days. No nausea, but fatigue for sure. So, I had to take it easy for a few days. My husband is taking good care of me! I don’t have much of an appetite but find small snacks work for me. Having trouble forcing myself to drink as much water as I know I should. I’m hoping now I go back to normal until it’s time for the next treatment! Not looking forward to losing my hair again. I imagine that will happen in the next week or two.
Thanks for listening!
Always hear to listen!! So sorry you had problems so quickly! Glad you have someone taking good care of you!!! Drink the water!!! You know it gets those chemicals out of you faster and helps you to keep from getting dehydrated which only brings on more issues!! I'm cheering for you!!
I so look forward to your replies! My husband is helping me and I am trying to get that water in! Feeling better now. I’ll just have to remember that days 2-4 will be tough!
Hope you are doing well! I’ll let you know how the next chemo goes!!
Hi, Lisa!! Glad things are getting better for you!! It is a long trail but hoping for great results at the end!! Do keep me posted on how you are doing!! I usually check this site at least every other day if not every day!
Round 2 done! This time the knee pain lasted longer and the fatigue is really getting me down. I want to be more active and work more but I just can’t. My husband and my friends have been so understanding. I am grateful for their support.
There are 2 new threads on the Share Your Story forum and its good to talk to others. Its hard to hear about recurrences and the difficulties others are experiencing, but we need to lift each other up!
Hope you are doing well Ann!
Hi, Lisa! So sorry this round has been so hard! Get your rest now - that is the most important thing!! I know it is discouraging not to be able to get up and go, but your body sounds like it is telling you it needs to rest and gain energy to continue the fight!
I am doing well! My next check is in June. I am going every four months right now. I don't have insurance, so I am not limited to when I see the doctor. If this cancer comes back, I want to catch it as early as possible!!!
As we have discussed, it is importanat for all of us to keep in touch and encourage one another through this journey!
Have a great day!!!
Just had my third round of chemo. Joint pain was/is bad again. Neuropathy has spread to more fingers and toes. But I’m hoping that the chemo is killing those cancer cells! Laying around, resting, now fighting the fatigue.
Hope everybody else is doing well!
Glad to hear you are finished with three rounds! Does that make you half-way now? I can't remember how many rounds you were doing! So sorry about the joint pain! Know how that fatigue can hit you, but rest so you can feel better as quickly as possible!
Continuing to pray for you every day as you walk this path!
Yes! I’m halfway through! 3 more treatments to go! I’m going to get Euflexxa shots in my knees and hope that helps! I can’t take anything due to the blood thinner I’m on. At least after chemo is over I should have some relief. It’s aggravating not being able to walk much. I’m not a physical fitness fan! I used to enjoy walking. I am ride a stationary bike a little bit!
We just got a camper today! We are moving the retirement travel plans to now! Planning a cross country trip near the end of July as long as I have a clear scan in June!
What fun!! I took a trip to Alaska last year after I was told I was cancer free! It was a wonderful experience that I will never forget!! I am not good about stepping out on my own, but I am learning to do that since I was diagnosed with cancer! Cancer has a way of making you move on!! Don't know where you and your husband are starting or where you are going, but if you come through Mississippi, I would love to meet you!
My next appointments are in June! I am trying to keep busy not worrying about them!!
Hope your next treatment goes well! You are on the countdown! That is always good!
Keep in touch!
Anne, we are from Pennsylvania and are headed to Kentucky and Texas, New Mexico and then out Las Vegas where my daughter and SoCal where my husbands family lives.
Where in Mississippi do you live? I’d love to be able to meet!
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