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Uterine Carcinosarcoma

lmd419
Posts: 6
Joined: May 2014

Hi - I am new to the boards.  My mom was recently diagnosed with Uterine Carcinosarcoma Stage 3.  She had a hysterectomy in November 2013 and started carbo/taxol chemo in early 2014.  CT scans showed a golf ball size tumor and small nodules on her lungs, so her cancer is considered Platinum resistant and she is now on a different chemo regimen of gemzar/taxotere/avastin.  Her next CT scan will be in June.  I've been browsing the boards for some time and find your stories inspiring.  While I am looking for support, I am also interested in learning all I can about this cancer and what others are doing in their fight.  My mom prefers not to use the internet for research/support as it can be a very scary place.  I certainly can't blame her for that...  I would love to hear from other survivors out there, details about treatments (conventional or unconventional), books to read, websites you recommend, etc.  I'm not happy to be here but I'm glad there is a place like this to turn to. 

NoTimeForCancer
Posts: 409
Joined: Mar 2013

I am sorry you have had to find us, but welcome.  Your mother is right that the web is a scary place so that she has a child willing to go and search out information says a lot about what her child thinks of their mother. 

I am sorry I didn't have the same type of cancer your mother does but hopefully some of the other wonderful women on the board with chime in.

I did find the following article which mentions your mother's specific cancer and thought you might want to read it:

http://www.montefiore.org/body.cfm?id=1738&action=detail&ref=842

 

lmd419
Posts: 6
Joined: May 2014

Thank you for your response!  And for the link!  I've read some about "sandwiching" radiation between chemo.  Her doctor doesn't feel like she is a good candidate for radiation because of where the cancer is located. (The mass is close to the base of her spine, the nodules in her lungs are not close together).  He said that radiation is most effective when there is a single or close area where the cancer is located.  Does that make sense? 

I'm so glad I found this community and I hope to hear from others.  I want to help my mom in any way I can and to pass along motivational stories as I find them.  She's my best friend! :)  She is strong and feeling great right now and I want to encourage her every step of the way.  And I want her story to inspire others as well.

cleo
Posts: 122
Joined: Sep 2009

That would make sense.   I had stage 3/4 as the cancer had gone through the uterus into the bladder.   I had radiation only.      That was nearly 7 years ago.  I agree totally with your mum. I took one look at the internet...saw the prognosis...that really annoyed me and I have had no desire to find out anything more.  I figured that the specialist knew what he was doing and I would get on with my decision that I was going to be fine.   I told 3 close friends as I had to be away from home for the radiotherapy - and I also did not want family to talk about it/worry as I just wanted to get on with the hiccup in my life.  My son was brilliant.  Practical, no fuss, there when I needed him and totally understood that for a while other people were in control of my life and I wanted normality.    I wish your mum all the best and applaud her decision.

lmd419
Posts: 6
Joined: May 2014

Thank you Cleo.  I have read your story and I have told my mom about you and several others on the boards.  You are such an inspiration.

TexasAnya
Posts: 9
Joined: May 2014

Your Mom is lucky to have you. My "baby girl" set up this  for me. I have to go next week to brachytherapy follow with 6 cycles of chemo. Two years ago I had double masectomy, with chimo. Not fun, but what can we do?  Year later my right thyroid was taken out, but that one have no cancer, but huge mess. This time my cancer was golf size too, my uterus. Stage IA endometrial carcinoma. Since I had breast cancer I have to go with my doctor advise. I'm scare to death, but we just can't give up. Better us, then our children. When I see kids with cancer on the TV, I always cry like a baby, now actually understand too, because my cancers. Find anything to help Mom. Every day is a present, remember. Today is a good day to be alive. I wish all the best and pray, to your Mom and you too. Gaby.

Teamkelly
Posts: 50
Joined: Sep 2012

My name is Nicki, I am sorry to hear about your Mom's cancer.  My sister-in-law also is not interested in using the Internet for information or support, so I do it for her. Kelly was diagnosed in August 2012 and had surgery in September, She was stage 3C, we went to Sloan Kettering for a second opinion after the initial surgery they suggested that she follow her doctors advice as he was one of their top surgeons in California. Kelly had 25 treatments of carbotaxol following the surgery and then nothing but a follow-up every six weeks. She went on with her life and normal routine. In January 2014 she began slurring her words and being unsteady on her feet she was rushed to the hospital and diagnosed with METS on the brain, three of them. She underwent brain surgery where all three were removed 2 completely one partially then cyber knife therapy to treat them. At the time of the brain surgery it was discovered that she had a tumor in her abdomen as well as one on the wall of her chest cavity. It was decided to remove the one in her abdomen and treat her with 20 rounds of radiation to the abdomen. When her doctor removed the tumor in the abdomen he placed something in her abdomen to protect her from the radiation not sure what this is but some type of mesh shield. The tumor in her chest cavity as far as we know remains today, it was decided that she would have no more treatments the doctor had nothing else to offer her. In February 2014 she decided to try medical marijuana, she lives in a state where it is legal. She saw the doctor who wrote her a prescription and then someone came to her house with different forms of the marijuana. At this point Kelly was losing weight on a regular basis was extremely fatigued and did not look well at all, she was unable to exercise which had been something she had done even through chemo and radiation. She decided after we did a lot of research to use the marijuana oil which is a highly concentrated form of the cannabinoid that is in the marijuana ( for more info go to Phoenixtears.ca/ , use the From Rick drop down button). Kelly immediately was able to sleep through the night without medication, was able to majorly reduce her pain medication and is now completely off of it, and started to regain her weight even though her appetite has not come totally back, she was able to eat. She will have another brain scan next week and if there are more tumors they will treat with cyber knife, her last brain scan showed that there was no tumor activity and that the places that had had surgery were starting to fill in. She will have a full body PET in about a month. This week Kelly started back with weightlifting and is getting to exercise on a regular basis, the marijuana does make her extremely relaxed and she started sleeping a lot in the beginning but is now adjusting to it and it does not affect her as much as in the beginning. She will take a gram a day of the oil for six months which is the recommended dose for those who have had chemo and radiation. By the way Kelly is 66 years old and has never had any health problems, she also has never had children. 

As far as finding out about this disease the statistics are not good but each person is their own statistic as many of the ladies on the site will tell you, don't go by the statistics go by what your mom is able to do and tolerate. I hope this has helped you, God bless you and your Mom.

Ro10's picture
Ro10
Posts: 1362
Joined: Jan 2009

Thanks for the update on Kelly.  Glad to hear she has found relief with the marjuana.   glad she is able to get back to exercising.  I hope she continues to gain weight.  I thought marjuana increased the appetite, but I guess not for her.   I hope her next scans come back with no new tumors.  Kelly is lucky to have you for support.  You both remain in my prayers.  

Teamkelly
Posts: 50
Joined: Sep 2012

Thank you Ro! Yes, it has increased her appetite, her problem is something happened to her tongue when she had the brain surgery, so she is having a hard time enjoying food because it just does not taste the same. Without the marijuana she would still be losing weight, But she is gaining now. We are hoping the tongue will get better over time. I can't believe the difference the marijuana has made in her attitude, in the beginning she slept so much while her body was adjusting to the high dose, but I actually believe that this sleep without the anxiety about the cancer has really restored her energy.

Maria_in_So_Cal
Posts: 2
Joined: Jul 2014

First of all, thanks for posting this! Your sister-in-law is an inspiration. My mom has recently been diaggnosed with this cancer as well (3B) -- has had full hysterectomy and is now exploring treatment options. Could you let me know the name of the surgeon or specialist your sister-in-law saw in California? We are also in Cali, and I'm struggling to find anyone who has a lot of experience with this; we want to make sure we get the best possible chemo/radiation treatment plan.

Thank you!

SUNGRANNY
Posts: 74
Joined: Dec 2012

Hello LMD,

Your mom is fortunate to have such a caring, supportive daughter willing to do research for her.  I was diagnosed with stage 4, Uterine cancer, serous type in November, 2012, with effected lymph nodes that could not be removed.  After surgery, chemo, and radiation I feel very grateful that the most recent CT scan, Dec 2013, was NED, (No Evidence of Disease) which is the gold standard.   I tell you this as another example of "don't listen to stats" and "don't give up."

I am thankful to the wonderful oncology and radiation providers. However I do want to share with you the complementary treatments and techniques I've done (and do), which I feel are a huge part of the positive results.

-Exercise. Keeping my body moving has been important in feeling better.  It also promotes production in the body of glutathione, and a vital antioxidant.

- Nutrition. Anticancer diet.

-Supplements that were recommended by the Integrative medicine team and a wonderful, knowledgeable Doctor of Oriental Medicine.  Also, good advice from women on this discussion board.

-Acupuncture to aid healing and reduce side effects.

-Guided Visualization.  There are many CDs available, as well as some on the internet.  I frequently listen to Belaruth Naprostek's "guided visualization for healing."  During chemo and radiation I used "Prepare your body for chemotherapy and radiation" by Sue Van Hook.  

- Meditation and guided body scans to reduce stress.

-Prayer. My own prayers as well as those of friends and family.

MY best to you and your mother,

Sara

 

lmd419
Posts: 6
Joined: May 2014

Thank you all so much for the replies!!  You have given me new things to research and new hope! Medical marijuana is not legal in our state but I find the information on it very compelling, defiately something we will consider.  We both recently read Recovery From Cancer by Elaine Nussbaum.  My mom has always been a healthy eater, physically active, maintained a healthy weight.... She never had any health problems before this (as some of you have mentioned too), but we are interested in some dietary changes after reading this book.  I am also going to do some more research on the Anticancer diet.  Any recommendations are appreciated.   We are still waiting for her next scan to be scheduled - it should be very soon.  Thanks again - you guys are amazing!!

GG1955
Posts: 4
Joined: Jul 2014

I am glad that you are doing great SUNGRANNY.  I was diagnosed in Jan 2014 carcino sarcoma stage 3c.  I had radiation as to shrink the tumor,, a total hysterectomy and will be receiving chemo in about a week.  I know that I am going to beat this, through God.  This has made me a stronger person with a mission. I pray, have a very positive attitude and try my best not to let anything bother me.  I decided to go on a raw diet, along with taking supplement while going through chemo.  I wish everyone the best in fighting.

 

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