Uterine carcinosarcoma

I am so sorry this is happening to you!  But, I think you are on the right track getting that second opinion.  What type of uterine cancer to you have and what stage and grade?  We have women on here who are showing No Evidence of Disease (NED) who were orginally diagnosed with Stage IV, Grade 3 cancer.  I was originally diagnosed with Stage I, Grade 1 cancer but after my hysterectomy in September 2015, it was changed to Stage II (oncologist's best guess since he did not take any lymph nodes), Grade 3, Uterine Papillary Serous Carcinoma (UPSC).  Since he was not expecting this and did not biopsy any lymph nodes, he immediately wanted a CT scan and chest x-rays.  Fortunately, for me, they all turned out negative.  He prescribed six chemos (Taxotere and Carboplatin) but I only made it through three after suffering life-threatening (my GP and I thought so; my oncologist, not so much) side effects.

This is an excellent place to come to get information - honestly, there are several ladies on this site who could probably get their MD!  But also remember, most of the women here are still here because they are newly diagnosed, still in treatment or treatment has not worked.  I am NED but remain to give other woman hope that this horrible disease can be conquered and treated, not as a death sentence, but as a chronic disease like diabetes.

Please come back - we are here for you and we ALL understand exactly what you're going through!!

Love,

Eldri

Glad you found this forum for support. Get a second opinion. Sounds like the cancer is in more than one area of your body. What prognosis  were you given other than with chemo and radiation we expect to kill the cancer. All feelings are normal- anger, fear, confusion, grief, anxiety etc. Talk to your doctors nurse practitioner as they will spend more time with you. ((HUG)). 

Lori

If you have any concerns about the treatment plan your doctors have proposed, you should certainly seek a second opinion. I was diagnosed with uterine carcinosarcoma (MMMT) cancer in November, 2016 and staged as IIIB Grade 3 following surgery in December.

I had four cycles of Paclitaxel/Carboplatin, followed by four cycles of lfex/Mesna/Adriamycin. The use of different drugs for "phase 2" was planned from the beginning and not the result of any allergic reactions to the first two drugs. I then had 25 external radiation sessions.

So far, the treatments seem to have been effective for me. The CT scan I had in July 2017 after completing the eight chemotherapy cycles did not show any evidence of disease, nor did the scan in December, 2017. The scan I just had a couple of weeks ago was also clear.

There were some tough weeks during chemo, especially during the phase 2 treatment period. Radiation was relatively easy for me once I committed to the low fiber, bland diet recommended by the radiation nurse. I did develop a bladder inflammation the last week of treatment, but this disappeared after a couple more weeks.

I recovered well after treatment and my main residual side effect is very mild neuropathy in the balls and toes of my feet. And my hair, which was already thinning before cancer, grew back even more sparsely.

Given the aggressive nature of uterine carcinosarcoma, I agreed with my doctors to treat this cancer with both chemo and radiation, even though radiation in particular hasn't been shown to extend survivorship (although it can reduce the chance of recurrence to the pelvis).

I'm well aware that this cancer has a tendency to recur in the future. But I feel that my front line treatment has given me cancer-free time that I may not have had without the treatment.

skshello said:

uterine carcinosarcoma
EZLiving, thank you ..it is uterine carsinosarcoma, and they said stage one since they got all they could see after the operation. Then they said stage 3 after the final diagnosis, and after the pet/ct, it got the dreaded stage 4. I do not really see where that makes a difference if all of the treatments are the same ...I am especially worried about the infosfamide, since the side effects are truly severe.
I am so glad you are NED ...that is truly a blessing for you.

In my earlier response I mentioned that I had received Ifosfamide and Adriamycin (Doxorubicin) as phase 2 of my chemotherapy treatment. Since Ifosfamide can cause serious bladder problems, my medical oncologist admitted me as an inpatient for three days for each of these four cycles. I received the Ifosfamide over the three days, along with Mensa – a drug to help prevent bladder damage. I also received fluids to flush the chemo from my kidneys during the entire stay. And my urine was checked every time I went to the bathroom to make sure there was no blood (there never was).

I actually felt fine in the hospital and was able to work on my computer, visit with family and friends, etc. The day after I got home I also gave myself a Neulasta shot to reduce the chance of infections.

While I never had any reaction to the Neulasta shot, I did feel absolutely horrible a few days after I got home from the first hospital stay. I frankly wasn't sure I could continue with this regimen, given how bad I felt.

The following week I had to drag myself to the treatment center for my regular blood tests. While there, the oncology nurse gave me fluids and more antiemetics, which did help a lot. I also went back at the end of the week for more fluids and antiemetics.

After this first difficult experience, the medical oncologist changed the protocol for treatment on the last day of next three cycles. I was given a long lasting antiemetic, with a prescription for a decreasing dose of steroids to last over the weekend. This did help me avoid the worst of the side effects that I had had the first time, but I still scheduled one or two additional fluid/antiemetics treatments at the outpatient treatment center during these cycles too.

So while this second phase was definitely harder on my system than the first Paclitaxel/Carboplatin phase, I did make it through all my treatments on schedule and was generally feeling fine within a month after the last treatment.

If your doctor plans to give you Ifosfamide on an outpatient basis, be sure you ask about the steps that will be taken to prevent bladder problems and other side effects, which may be more severe than with the other drugs. But as you see from my experience, there are ways to address side effects and prevent bladder damage.

K3 said:

Uterine Carcinosarcooma

Hi,

 I am new to this site. My Mom is 77 and was diagnosed with stage 1 uterine carcinoma. She had a TAH and will be getting her fourth of 6 chemo treatments on Monday. The worst days following the chemo seem to be day 3-5, mostly due to bone pain. Has anyone experienced bone pain following chemo? If so, any recommendations on how to conquer it? Thanks in advance for any advice and recommendations

K3, I am so glad you found us and what a good daughter you are to be searching for help for your mom.  

Bone pain is a common side effect and I believe some of the other ladies have had some successes with Claritan.  

K3 said:

Uterine Carcinosarcooma

Hi,

 I am new to this site. My Mom is 77 and was diagnosed with stage 1 uterine carcinoma. She had a TAH and will be getting her fourth of 6 chemo treatments on Monday. The worst days following the chemo seem to be day 3-5, mostly due to bone pain. Has anyone experienced bone pain following chemo? If so, any recommendations on how to conquer it? Thanks in advance for any advice and recommendations

Is your mom having neulasta shots?  They can often cause bone pain.  Ask her provider about adding Claritin to her regimen - I believe I took it the morning of and the day after my neulasta shot, and I had very little bone pain.

Hello and Welcom; I was dx in 2011 with carsanomasarcoma uterine cancer. I went to UT Southwestern Hospital and Cancer Center in Dallas, TX. I was Garde 3 cancer and stage 3c1.  I had six rounds of Carb/Taxol every 21 days and no radiation.  I too am overweight and had to take one shot to the belly everyday for 30 days starting in the hosiptal the day after surgery.  I did not get a second opinion nor did I have any scans before surgery.  I did have a D&C done by my reg gyn dr. The results were that the scapping from the D&C had the carsanomasarcoma cancer cells in it.  I was immediately hooked up with a gyn onc dr and had a TAH 8 days from the results being told to me. No one knows what is is like unless you have walked though it.  My family and friends are wondrful support but they do not trully understand.  

I found this site and the women are wonderful.  They listen, explain, cry with you and for you, are happy when you get good news, and can understand your venting.  It is a great place to come.  Glad you are getting a second opinion and the treatment could change.  I always questioned my gyn onc dr on why she did not recommend radiation.  She said that the Nat. Cancer Institute said that there were studies that said it was not proven to help vs having the radiation.  She said we would save the radiation if the chemo did not work.  I am coming up on 7 years since my last chemo treatment (knock on wood, thank God, the Higher powers that are if no religious) and have no recurrance.  Wish you all the best. trish