Dealing with GCS diagnosis
February 2, 2019 at 9:22 PM #8069
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!
February 4, 2019 at 7:08 PM #8082
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!
February 9, 2019 at 3:33 PM #8102
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!
February 10, 2019 at 6:53 AM #8108
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!
February 18, 2019 at 9:58 AM #8148
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!
February 18, 2019 at 10:05 AM #8149
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!!
February 19, 2019 at 5:25 PM #8154
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!!
February 21, 2019 at 5:12 PM #8194
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!
March 13, 2019 at 4:53 PM #8315
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!
March 15, 2019 at 7:12 AM #8323
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!!!
April 1, 2019 at 9:30 AM #8477
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!
April 1, 2019 at 11:48 AM #8478
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!
April 6, 2019 at 4:51 PM #8525
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!
April 8, 2019 at 6:17 AM #8536
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!
April 11, 2019 at 9:57 AM #8566
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!
April 15, 2019 at 6:17 PM #8609
Sorry to be so long responding!! I had a friend doing a job interview today, and I was helping her get organized!
I live in central Mississippi – near the capitol, Jackson, so it would be way out of your way! Where in Kentucky are you going? I have relatives there! Maybe I’ll invite myself for a visit!
Hope things are going well for you!!
April 22, 2019 at 7:16 AM #8673
Round #4 done. 2 to go!
The pain gets worse each time. Hate having to take Oxy but that’s the only thing that touches the pain. I get down when this pain takes over.
I’m puttering in the camper looking forward to our trip this summer. In Kentucky, We were going to go to Churchill Downs and a horse museum near there! I love horse racing! We’ll have to touch base closer to departure time to see how close we might be to you!
April 30, 2019 at 4:46 PM #8842
Hi, Lisa! Sorry to be so long responding! I have a flower business on the side. We had a wedding this weekend that took a lot of time – as usual!
My family is in the Lexington area. My grandfather was actually a vet for two horse farms in that area – he worked there when the farms were just starting! Watching the Kentucky Derby is a deep-rooted activity for my family even today! We always set aside the first weekend in May to watch!!
Let me know when you are headed that way! I will see if I can get up there to meet you. I do work some during the summer; I am a teacher.
May 10, 2019 at 6:17 AM #9089
Yesterday was my 5th treatment! One more to go. I e also been getting shots in my knees for the arthritis. Hoping for some relief! The knee pain from the chemo is with me all the time now, not just a couple days after chemo. I take Percocet more than I’d like but it’s the only thing to relieve the pain! I have been working a couple weeks a month. Usually can’t work at all the week after chemo. I come home and take a Percocet and ice my knees and feel a little better!
My scan and check up with Dr Arend st UAB is June 26. I sure hope the carboplatin is doing the job and I’m clear!
Our trip is scheduled for July 27 and I think we’ll be in Lexington on July 29. I’ll double check with my husband!!
Hope all is well with you!!
May 15, 2019 at 9:18 AM #9178
Good news!! Only one more treatment to go!! Actually, UAB is only 3 hours from me, but I know that time is precious as you wait for results. I have a scan and exam on June 3-4. I always get anxious as the time draws near!
I will check with my family and see how the July date works for them! I have already told them I was hoping to meet you. They were very supportive of my coming and my reason for coming!!
Look forward to hearing that you are finished with this round of treatments!!
June 12, 2019 at 6:32 AM #9450
Sorry I haven’t replied for a while. Felt pretty bad after my last chemo, but thank goodness it’s over now!! Now, I’m praying for a clear scan on June 26!
How did your scan go? I think you said June for your next scan?
So, we leave on July 27. We’re staying at the Ft Knox Air Force campgrounds that night and on July 28, we will be going to the Lexington Horse Museum and then to Church Hill Downs for dinner and simulcast betting! Leaving on July 29 for Waco TX. I’m a fan of Fixer Upper!
I started physical therapy this week to try to regain some strength for our trip. The pain has been so bad I’ve been very inactive.
Hope you are doing well!
My email is firstname.lastname@example.org
You can email me and maybe we can meet up the evening of July 27 or somewhere on the 28th
If that doesn’t work out, I’d love to continue emailing with you. I have trouble logging on to GCS Project from my phone.
I think I told you about the MMMT survivors group on Facebook. It’s a wonderful source for support and encouragement if you do FB!
June 13, 2019 at 3:00 PM #9463Margret RibochParticipant
Do you will have radiotherapy after chemo?
Greatings from Switzerland Margret
June 13, 2019 at 6:11 PM #9467
Dr Arend said if there are still cancer cells showing in my scan, I might have done brachytherapy. She said she’s not a big fan of radiation. I’m hoping it’s not necessary as it looks like sometimes bowel problems can pop up after radiation.
June 14, 2019 at 6:18 AM #9474
Glad to hear from you! Will be praying for the physical therapy!
Sent you an email about your trip!
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