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Uterine carcinosarcoma

skshello
Posts: 13
Joined: Jun 2018

Oh boy ...the initial doagnosis prior to the complete hysterectomy in 5/30 was tough enough ...but... yesterday was a whole new kind of experience..  I had a pet/ct scan, and got the results back in a couple of hours.  There are 3 tiny spots, and she said they are not visual with a cat scan yet.  They still recommend the 6 taxal treatments, 21 days apart, and infosomide by a bag at the same time.  Then 25 radiation treatments.  But to be truthful, they said that the prognosis does not change all that much if I do choose to endure this.  i have stopped all refined sugar, am taking a large dose of vitamin c every day, and have lost weight andeat no fast food any more..I am going to call Huntsman Cacner Center for a second opinion, it is only about 5 hours away.  All of my friends and family are healthy, religious, and dynamic folks, soooo supportive, but they are not walking my my shoes ...I feel more and more like I am speaking a different language..  one that I would not wish on anyone... I actually cried last night for the first time since mid April when I started bleeding... Please, is anyone here that can speak my language??

EZLiving66's picture
EZLiving66
Posts: 1354
Joined: Oct 2015

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

skshello
Posts: 13
Joined: Jun 2018

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.

cmb's picture
cmb
Posts: 374
Joined: Jan 2018

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.

skshello
Posts: 13
Joined: Jun 2018

Thank you for your update...I have indeed heard that the bladder gets hit hard with it...you have done amazing throughout your treatments  I hope it continues to go well with you.  I am still weighing the quantity vs quality decision...I am going to Huntsman on the 23rd, but it appears that they only have eyes for chemo and radiation ....so I search on...and therre is very little else ....

janaes
Posts: 771
Joined: May 2016

Hi and welcome to this board. It is a good place to come and you will find people who understand you and can hear your pain. We get it here. I come from a family that doesnt jave much cancer.  Ive had it three times and my siblings nore parents have had it. This is the place to find support.The news of cancer is never fun and its okay to cry. Please no you are acting just like others do in this. I was very angry and needed to sharemy feelings here. Come here as often as you need to.

Janae

Northwoodsgirl
Posts: 536
Joined: Oct 2009

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2589
Joined: Mar 2013

Welcome, skshello.  You are learning a new language and are in a place where the wonderful women will help you, listen to you, and cheer you on.  

cmb's picture
cmb
Posts: 374
Joined: Jan 2018

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
Posts: 13
Joined: Jun 2018

Your experiences are amazing, andI have finally found a few that have a "good" outcome at the end of the dreaded chemo/radiation treatments...which is something that neither my chemo dr, or the radiation dr, have indicated.  I have seen some of your names  in the past couple of weeks, and I admire your tenacity to stay and comment on these sites, and also for your zest for life.  As I was waiting for the pet/ct yesterday, I saw people who had pale skin, no smile, no hair, s8nken eyes, and had to be held to stand up.  And I said to myself...DO I WANT THAT FOR MYSELF???  Well, the second opinion will be the next step ...and then, who knows???   Uterine Carcinosarcoma is a really bad opponent....

 

Again, I appreciate each and every comment... great perspective.

judyv3
Posts: 144
Joined: Dec 2013

Hi!  I'm just beginning my uterine cancer journey.  But I have had anal cancer with chemo and radiation.  I felt very alone.  I joined the discussion board for anal cancer and learned so much and it was great having people who knew just what I was going through.  I remember going to the oncologist and seeing the people who were so sick looking and thinking the same thing - is it worth it?  And then at the end of treatment I was literally one of those people BRIEFLY.  Get your second opinion, ask all the questions you need to ask.  Come to this discussion board and vent because these are the people who feel your pain.  One day at a time, that you can do.

 

Sending love, positive energy and peace.

 

skshello
Posts: 13
Joined: Jun 2018

It is great to see these comments...and know that others are enduring what I am walking through.  Thank you for the love, positive energy, and the peace...

Sandy

K3
Posts: 1
Joined: Jun 2018

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 :)

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2589
Joined: Mar 2013

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.  

cmb's picture
cmb
Posts: 374
Joined: Jan 2018

On the thread titled "bone pain following carbo taxl" several members, including myself, described our experiences and some solutions for bone pain. See  https://csn.cancer.org/node/314595

I hope one of the solutions posted work for yur mother. 

Armywife's picture
Armywife
Posts: 312
Joined: Feb 2018

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.

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

On about the 3-5 day the pain would startt.  I had carbo/taxol for 6 treatments every 21 days.  i also had the taste buds go away during that time too when nothing tasted good.  Even my favorite go to food tasted bad and made me sick to my stomach.  I still cannot eat toast with PB and Jelly on it.  Just the smell of peanuts make me queasy.  I have gotten better I now eat Almond Butter but it does not smell like peanuts.  I just took Hytrocodone for the pain and stayed in bed with heating pads on my legs.  About the time you get to feeling better it is time for another treatment.  Tell her to hang in there.  This too shall pass and be a memory. Good Luck to your mom and to you helping her get through this. trish

skshello
Posts: 13
Joined: Jun 2018

Well,I have finally gotten the second opinion scheduled.  It will be in Salt Lake CIty, Huntsman Cancer Institute, on the 23rd of July ...I am hearing that they are deciding if the diagnosis is correct, and then will have a meeting to determine the treatment they suggest... i hafe no doubt it will include the chemo and radiation that has already been determined for me here.... after that, time to think outside the box...

 

Sandy

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

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

skshello
Posts: 13
Joined: Jun 2018

You are a trooper.  I am sure you have had good, and not so good, times..but you have gone through it...so true, others simply do not understand.

 

My second opinion was with the sarcoma  group, and they said thata radiation at this time is debatable, and would talk about it later.  They did not recommend infosfamide, and suggested the taxal and another one..the name slips my mind right now.  every 21 days, 6 times.  But they really interested me with agenetic type test.  They take a section of the tumor that is stored at St Al's, and send to a  lab back east.  She said it is like opening a book and looking for the misspelled words.. if they can determine what to target, they will recommend the exact thing to get rid of those cells.  It is not cheap, but it seems that if my insurance will not pick it up, I can get assistance from another source.  This really seems to be more logicalto me ... I pray that this can be what helps us all....

pinky104
Posts: 574
Joined: Feb 2013

The other chemo drug that is the standard along with Taxol is Carboplatin.  The genetic testing place you're discussing is probably Foundation One.  You'll have to fill out a form to get assistance from them.  They're really generous with their assistance.  I was able to get it easily.  Their report showed several things wrong with me, but unfortunately, no drugs that had been found to work on my type of cancer.  My first bout of cancer was in 2010.  It came back after 7 years.  Fortunately, after long, complicated surgeries and several months of  chemo both times, I was found to have no evidence of disease both times. I had been diagnosed with stage IVb Uterine Serous Papillary Carcinoma, which is the highest stage there is, when I was first diagnosed in 2010.  I had Carboplatin and Taxol the first time around.  Seven years later, I had Carboplatin and Gemzar.  When I had an allergic reaction to Carboplatin after having had it 11 times, I had Cisplatin substituted for the Carboplatin for my very last chemo.  A year later now, I just got another CT scan and I still have no evidence of disease.

txtrisha55's picture
txtrisha55
Posts: 684
Joined: Apr 2011

As pinky104 says...Carboplatin and Paclitaxel or Carbo/Taxol are the two chemo drugs that that give.  I had 6 treatments of it every 21 days.  Before the treatment starts they do give you different shots of histamines, a defense mechanism your body employs to fight off allergens, like benadyl, one to help with nausea, etc.  They give those shots first wait awhile then start with the chemo on slow drip to make sure you do not have a reaction to the medicine.  Once they see you are not going to have one, they up the speed.  The first treatment took me the whole day at the cancer center.  The next ones after that still seem to take a long time but was only about 5-6 horus instead of 8 hour day.  I did not have any genetic testing on my tumor so I was just lucky I guess that so far the Carbo/Taxol has worked.  I also did not have any radiation, my dr chose to save that if it returned.  There again I have been lucky.  I never say I am in remission, just NED.  Wishing you all the best. trish

skshello
Posts: 13
Joined: Jun 2018

I have been feeling good, able to go and do what I need to.  I understand that one of these days it will not be so.. just hoping that I can be there when my daughter gets married in a couple of months and we can go on our trip to Hawaii late October.  I am finding that if you ask 5 different doctors, you will get 7 different answers..they try to use past experience for idagnosing something they do not understand at all.  I had great faith in them at first, but have seen through their "winging it" ... same with chemo and raidation, they have changed their recommendations quite a few times... so I choose nothing.  I still eat healthy, but go on with my life... thanks to all of you for your great comments, they really help me ...

Northwoodsgirl
Posts: 536
Joined: Oct 2009

Skshello,

You of course are making a very personal decision based on your values, situation, diagnosis and what you understand about treatment options and quality and quantity of life. 

My heart breaks for you....

Lori

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2589
Joined: Mar 2013

skshello, it sounds like you have made the decision that is best for you, and that is good.  All the warriors are in my prayers. 

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