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Uterine Carcinosarcoma, any survivors out there?

cbotts
Posts: 6
Joined: Feb 2010

Hi everyone,
My mom was diagnosed with carcinosarcoma in Dec '08, she had a total hysterectomy and removal of pelvic lymph nodes (cancer was found there). Since then has done chemo and radiation, finishing in the summer of '09.
She's doing ok now, but I was just wondering if there was anyone out there with a similar experience (I actually just found out what her diagnosis was a few weeks ago and am seeing how rare it seems to be).
Any feed back would be much appreciated because I really don't want to continue looking up survival stats as they seem pretty dismal.

cleo
Posts: 122
Joined: Sep 2009

I was diagnosed in 2007, Stage 3/4 as it had spread into lymph glands and bladder. I did not look at any stats after the first check as they appeared to tell you all the doom and gloom and nil positives!! I had 6 weeks of radiotherapy.
I am checked every three months, bloods etc, with a CT scan 6 monthly. To date there has been no change in the scans and I continue to be very well. I have slight lymphedema in my L leg due to the removal of lymph glands but that is easy to control and no hindrance.
It took me a good six months to get all my energy back, I did a lot of afternoon dozing but was told that this would be the case.
Pleased to hear that your mum is doing well and I am sure that will continue.

cbotts
Posts: 6
Joined: Feb 2010

Thank you very much for your quick response, its nice to know that there are other people going through similar experiences. I am glad to hear you are doing well, it gives me hope.
Thank you.

cathyK's picture
cathyK
Posts: 88
Joined: Jul 2009

hello
I was diagnosed with stage 4b grade 3 endometrial cancer total historectomy in june, then in july got chemo, cisplatin andromisn and taxol given every 3 weeks, 2 days of chemo
no radiation. ended chemo end of october, first 3 month exam is no cancer detected. I have spent a long time trying to find long term or even short term survivors with this stage of endometrial cancer and also have not found any , so guess I will try to be on here, saying Im still here , still around.
how is your mum feeling now?
cathy

cbotts
Posts: 6
Joined: Feb 2010

Hi Cathy,
Thanks for getting back to me. I hope you are doing well.
So for mom is ok, last CT was clear, she has a follow up on in the next few weeks and she seems to be doing well. How are things on your end?

Countrygirl3
Posts: 7
Joined: Dec 2010

I was slammed with stage 3 endometrial carconosarcoma Hysterectomy in May, it came back in Sept, so I had 2 rounds of radiation and start chemo Monday every 3 weeks for 6 treatments. I'm determined to fight this evil beast, no matter what.
Take care

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Hi Countrygirl....so sorry that to hear about your recurrence, but you will find much support and on this board. What type of chemo will you have? We are all here supporting you and ready to answer any questions that you have.

With your positive attitude, I am convinced that you will win this battle. Carry on!!

Karen

Countrygirl3
Posts: 7
Joined: Dec 2010

Guess I'm kinda anxious to just get my first week started, so I will sort of know what I'm dealing with, hoping I don't get sick. Some days I'm a brave rebel and other's I feel like a scardee cat. It sure is good to know you're all out there. I think the chemo is the same as what Cathy had.

Judi1213
Posts: 5
Joined: Dec 2010

Hi,
I had a complete hysterectomy in mid-October 2010. I am on my third chemo treatment with 3 more to go; I will begin radiation 5 days a week (weekends off) for 5 to 6 weeks after that.
I feel good. I'm handling chemo pretty well not too many side effects. How is your mother doing now? It is very difficult to research this rare uterine cancer and would love to stay in touch.

Thank You,
Judi
(Ohio)

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

Not to take anything away from this ACS discussion group, but there is also a discussion group on yahoo dealing with uterine carcinosarcoma, formerly referred to as MMMT. I am posting the web address for it. Note that it ends with uterinemmmt - all one word followed by a slash. http://groups.yahoo.com/group/uterinemmmt/

You will need to become a yahoo member by following the prompts.

You might also post a new topic on our site listing both Uterine Carcinosarcoma and MMMT in your topic. That might bring more attention from other uterine cancer group members with a similar diagnosis to yours since your type of cancer has multiple names.

Sending you a big hug.
Sally

Vbudafly8j7
Posts: 2
Joined: May 2011

Hello,
My mother 49 yrs old was just diagnosed with MMMT. They did not change or say it is formally known as anything. They keep saying Mixed Mullerian..and on Thursday she just had a hysterectomy. I am pretty scared through this whole thing, because they said Stage 3. I tried signing up for the yahoo chat but it didn't work for me;( My mom lives in Arkansas and my brothers and I live here in Vegas. She is very against radiation and chemo..so I don't know what to say or do, because I don't know anything about this. Thanks

Lione
Posts: 2
Joined: May 2011

Hi Judi,

My 67 year old sister has the same cancer and was given a complete histerectomy in mid-August of 2010. She took six rounds of chemo and was finished in December of 2010. Her cat scan in January showed all the cancer was gone and only microscopic scar tissue was seen. We were thrilled to hear this news, however low and behold in mid February her stomach began swelling and they had to drain two liters of fluid from her body. She is now taking a chemo pill every day for a month and is not doing very well. It makes her extremely fatigued and she has had to have blood transfusions and also developed blood clots in her lungs and neck. They had her on blood thinners and she is doing better with the clots but is still so weak she can hardly walk to the bathroom. How are you doing now and are your symptoms similar? The doctor says no to radiation treatments, but I noticed others on this chat have had radiation so I was wondering if anyone has had good results with it. Thanks and you are in my thoughts and prayers. Lione

ediegram
Posts: 27
Joined: May 2011

Hello,
My Mom was diagnosed with Type II uterine cancer - clear cell carcinoma with serous cells. I think we are talking about the same type of cancer. My mom was staged at 1B and had a full hysterectomy and lymph nodes removed. Thank God her pathology reports came back negative. Because the cancer had gone through the uterine lining, she is doing chemo treatments. She is suppose to have 6 - once week every three weeks. She has 2 down and 4 to go. This 2nd one has taken it's toll on her. She has to have a blood transfusion today. :( I know she will beat this though!!!

XOXO
Edie

Lione
Posts: 2
Joined: May 2011

Hi, thanks for writing, my sister's cancer is Uterine Carcinosarcoma. I believe it was stage III. She had no symptoms until one day she passed a clot of blood and within two weeks she was diagnosed and two weeks later had a complete hysterectomy as well as numerous tumors removed from her stomach and colin. This cancer spread like wildfire! She is currently on a chemo pill that they give lung cancer patients (because it is very agressive) and we will not know the results for a few weeks. I know every situation is different and I hope and pray your mom will get through this. Thanks and keep us informed.

Lione

ClareD
Posts: 1
Joined: May 2011

Hi

I have just left a consultantion with my mum in the UK. She has had surgery to remove the tumour but it has been staged at Grade III Uterine Carcinosarcoma.

we are all a little shocked to hear it was this much more aggressive rarer tumour instead of Endometrical Carcinoma. Any advice offered is appreciated. Cbotts how is your mum doing?

RoseyR
Posts: 462
Joined: Feb 2011

Clare,

If your mother is being treated with taxol and carboplatin, you might scroll through any of my comments (all by Rosey R, made between November, 2011 and now) about supplements that might help to prevent PN (peripheral neuropathy) and other side effects of this chemo regimen.

Let us know what treatment has been prescribed for her.

Wish I had all my comments in one place but am pretty tired right now and have to sign off after hours on the computer. I also just made some comments about what I ATE while on chemo; it's the first new topic on the discussion board. Also commented on how to make turmeric and curcumin (which your mom should take!) more effective.

May have more time to write more later.

Best,
Rosey R

oshbgosh
Posts: 2
Joined: Mar 2013

I am 54 years old, and I was diagnosed with Carcinosarcoma (Uterine cancer in) Sept of 1013. Had a complete hysterectomy October 3 2013.

I was told I had a very aggressive cancer and was to start Chemo and Radiation. I did a lot of reading and went to my chemo class and decided it made no sense to me to knock the Immune system down, the very thing we need to heal our body’s, so I chose not to do it. My doctor was not pleased with my decision. I then started to change things in my life. The main thing was getting my body’s Ph. correct and to do so I needed to detox my body and treat my body with the right foods and supplements. I used my food and drinks as my medicine. I just had my first CT scan and blood work since surgery and I am stable so far. This is the way I chose and I am not telling you not to do chemo but you should be doing this to help you get through chemo stronger. Chemo drugs are poison is going into the body, help your body recover with the right foods.

If you are interested look up, (Acidosis) this is about your body’s ph. and how simple it is to check, and how to correct it.

Wheatgrass juice, Kangen water, and organic everything you eat!!! As you read these sights you will learn more things you can take. Use your food as your medicine to give the body what it needs to fight; the body can do it with a little help from you.

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Know this cancer, MMMT is very, very aggressive.  Not sure exactly the year you were diagnosed as mentioned Sept 1013?  Do you mean 2012?  Did pathology find cancer any other places outside the uterus?

I was diagnosed 4 years ago as a stage 3c, cancer found in 1 pelvic lymph node.  What stage are you as I know it's grade 3?  Wish I was as trusting as you are, but can tell you I've been NED since completion of chemo and external pelvic radiation.  I do tons of research prior to start of treatments as a person who avoids any toxins and drugs in my body and thought I was a good eater and big exercise girl, but still saw a cancer diagnosis.  Found the only way was to get out as much of the cancer via my hysterectomy and hit the spots very hard with treatments where cancer was found.  Today I basically have overhauled my life style with natural type eating, exercise and  stress reducer techniques.  No guarantee this will work, but we all do the best we can...as this was my choice.

I can relate to keeping our immune systems strong and food is the easiest to start, but don't forgt the toxins around us -- BPA in plastics, homones in our animals we ingest such as in dairy, meat; then add on the pesticides in our vegetables and fruits.  As well we have toxins in our cosmetics, household cleaners and toiletrie product line.

Wishing you the best...

Jan

 

 

 

 

 

oshbgosh
Posts: 2
Joined: Mar 2013

I stay away from dairy now for the most part if I do have any it is organic same with my meat or anything I eat. I make my own soaps and lotions from organic products. My Kangan water machine has a setting for a low ph for cleaning and a high ph for drinking. Organic foods have no chemicales or pestacides, taste so much better but are much more spendy. I will be putting in my own organic garden this year. It is now away of life for me. No microwave, no plastic. I do take vitamine B17, I know is not sold in the U.S. but  here in Alaska we have a little law that alows for the sale of B17 so I can buy it from the health food store. I think the fresh weatgrass juice and the water are the two most important things I take, I also eat alot of live foods. Just kind of have to go backwards like thing use to be years ago befor all this crap has been done to our food. By eating organic you do not get the hormones and crap injected into the animals to make them GROW FAST. Same with fruits and vegetables organic has not been modified. When fruits and vegetables have been geniticly modified they lost some very important things that our bodys need.

Yes I did meen 2012. And no cancer was found any place else.

Everyone has cancer in there body but only some of us have it go haywire and I do beleive it happens when our body ph is to low. Just pee on a ph strip and you will know what your ph is.

I do it almost everytime so I can keep it in check. The first one in the morning is the most important one and the hardest one to get corected.

I just herd from DR. Oz show that a low dose asprin a day helps keep cancer away so I have added that to my daily routine good for the heart also.

 

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

There's a lot of good topic threads on here from past years.  Suggest hitting the search button at the top and enter your topic of choice.  

 

Points below I find of interest --Wink

 

    • Avoid sugar, especially fructose. All forms of sugar are detrimental to health in general and promote cancer. Fructose, however, is clearly one of the most harmful and should be avoided as much as possible.
    • Optimize your vitamin D. Vitamin D influences virtually every cell in your body and is one of nature's most potent cancer fighters. Vitamin D is actually able to enter cancer cells and trigger apoptosis (cell death). If you have cancer, your vitamin D level should be between 70 and 100 ng/ml. Vitamin D works synergistically with every cancer treatment I'm aware of, with no adverse effects. I suggest you try watching my one-hour free lecture on vitamin D to learn more.
    • Limit your protein. Newer research has emphasized the importance of the mTOR pathways. When these are active, cancer growth is accelerated. The best way to quiet this pathway is by limiting your protein to one gram of protein per kilogram of lean body weight, or roughly a bit less than half a gram of protein per every pound of lean body weight. For most people this ranges between 40 and 70 grams of protein a day, which is about 2/3 to half of what they are currently eating.
    • Avoid unfermented soy productsUnfermented soy is high in plant estrogens, or phytoestrogens, also known as isoflavones. In some studies, soy appears to work in concert with human estrogen to increase breast cell proliferation, which increases the chances for mutations and cancerous cells.
    • Improve your insulin and leptin receptor sensitivity. The best way to do this is by avoiding sugar and grains and restricting carbs to mostly fiber vegetables. Also making sure you are exercising, especially with Peak Fitness.
    • Maintain a healthy body weight. This will come naturally when you begin eating right for your nutritional type and exercising. It's important to lose excess body fat because fat produces estrogen.
    • Drink a pint to a quart of organic green vegetable juice daily. Please review my juicing instructions for more detailed information.
    • Get plenty of high quality animal-based omega-3 fats, such as krill oilOmega-3 deficiency is a common underlying factor for cancer.
    • Curcumin. This is the active ingredient in turmeric and in high concentrations can be very useful adjunct in the treatment of cancer. For example, it has demonstrated major therapeutic potential in preventing breast cancer metastasis.9 It's important to know that curcumin is generally not absorbed that well, so I've provided several absorption tips here.
    • Avoid drinking alcohol, or at least limit your alcoholic drinks to one per day.
    • Avoid electromagnetic fields as much as possible. Even electric blankets can increase your cancer risk.
    • Avoid synthetic hormone replacement therapy, especially if you have risk factors for breast cancer. Breast cancer is an estrogen-related cancer, and according to a study published in the Journal of the National Cancer Institute, breast cancer rates for women dropped in tandem with decreased use of hormone replacement therapy. (There are similar risks for younger women who use oral contraceptives. Birth control pills, which are also comprised of synthetic hormones, have been linked to cervical and breast cancers.)

If you are experiencing excessive menopausal symptoms, you may want to consider bioidentical hormone replacement therapy instead, which uses hormones that are molecularly identical to the ones your body produces and do not wreak havoc on your system. This is a much safer alternative.

    • Avoid BPA, phthalates and other xenoestrogens. These are estrogen-like compounds that have been linked to increased breast cancer risk
    • Make sure you're not iodine deficient, as there's compelling evidence linking iodine deficiency with certain forms of cancer. Dr. David Brownstein10, author of the book Iodine: Why You Need It, Why You Can't Live Without It, is a proponent of iodine for breast cancer. It actually has potent anticancer properties and has been shown to cause cell death in breast and thyroid cancer cells.

For more information, I recommend reading Dr. Brownstein's book. I have been researching iodine for some time ever since I interviewed Dr. Brownstein as I do believe that the bulk of what he states is spot on. However, I am not at all convinced that his dosage recommendations are correct. I believe they are too high.

  • Avoid charring your meats. Charcoal or flame broiled meat is linked with increased breast cancer risk. Acrylamide—a carcinogen created when starchy foods are baked, roasted or fried—has been found to increase cancer risk as well.
cookie24
Posts: 6
Joined: Mar 2013

I was diagnosed with the same thing last January (2012). I also went with the Chemo like the other person that replied to you. My 2 doctors said that this type of cancer is very aggressive which is usually found in the ovaries not the uterus. Had a total hysterectomy in February of 2012 and started my chemo in March and ended in June. Then during all this I found out that I had lung cancer and had my lower right lube remove in July. As of today I'm clean. I started going to the gym in December but having a little hard time with it because of my breathing,I lost 15% of my capacity breathing but I'm trying. I do agree with you that the Chemo is posion I feel that my body will not be the same but this was my choice and I'm okay with it.Good luck with your detox.

Susanna23
Posts: 66
Joined: Dec 2010

I just wanted to add to Jan's comment about MMMT and treatment. I was offered a choice of just follow up (no further treatment) or chemo in December 2010 after surgery for Stage 1a MMMT. I chose to do six cycles of carbo/taxol, with the usual reservations of toxicity/effects on the immune system but also did various other things such as vitamin D, reiki, diet, exercise and I have an integrative medicine doctor I still see who prescribes mistletoe therapy to prevent recurrence. So far, so good - last checkup two weeks ago, all was well. I have no idea whether chemo contributed to my survival so far but felt like the right choice for me (and also had few side effects)

Take care and let us know how you get on

Susan (london) x 

KU68
Posts: 1
Joined: Aug 2013

Hello,

My mom was recently diagnosed with uterine carcinosarcoma, they did a total hysterectomy (uterus, ovaries, fallopian tubes) removal of lymph nodes in pelvic area, uterus contained a tumor the size of an orange. At time of surgery they discovered cancer in fatty tissue around small intestine and bladder. They are doing an ultrasound today to see what they found in the mammogram after surgery in her breast. Tomorrow discussion of next step (chemo only, as radiation not an option) I have been reading on the internet to find out how serious this is, and I am reading a lot of various opinions. Looking for brutal honesty,,,,Can anyone help me? I am a concerned daughter of a 78 yr old mom who is in the midst of life changing stuff. Please and thank you.

~KU68

Ddkos
Posts: 1
Joined: Aug 2013

I was diagnosed with IIIB in October 2008.   Statistics certainly didn't look good, but I stayed upbeat.  Went through complete hysterectomy with taxol and carboplatin for six chemo treatments and then a month of external radiation plus a couple internal.   Cells were present in the body wash, mostly single but some in clumps of two or three.   Cancer had spread into vagina so portion of that had been removed as well.  I continued exercise--teaching line dancing five hours a week--all through treatment.  Just had my CA125 test last week, and number remains in the teens.  CT scans have been every six months but am now on an annual achedule.  I am so thankful.  I did not change diet or do any drastic supplements, etc,  did use B1and B6 during treatment.  Chemo has side effects, as does radiation, but I don't think I would be here if I hadn't followed the regimen my wonderful oncologist set for me!  I hit a huge milestone this year--70!

 

ConnieSW's picture
ConnieSW
Posts: 545
Joined: Jun 2012

And then 5 more, and another 5 and........

DrienneB
Posts: 11
Joined: Aug 2013

Wow, I'm encouraged. You sailed through your treatments and are still going strong almost 5 years later. Happy 70th!!

RoseyR
Posts: 462
Joined: Feb 2011

 

Dreienne,

 

Was on the CSN boards a lot during first year of treatment for Stage IB MMMT uterine cancer; if you scroll back through MMMT messages, you'll see posts from me, "RoseyR."

After six rounds of taxol/carboplatin and 25 pelvic radiation sessions, I am feeling great three years since diagnosis and two years since end of treatment.  The main residual effect of treatment, which caused me NO side effects beyond lost hair, has been low white counts; am still struggling to bring them up.

Since you had asked on another thread of discussion what we could all do to minimize recurrence, I'd recommend books such as Anti-Cancer by Dr. David S. Schreiber: a fantastically researched and upbeat book on how he prolonged his own remission by a decade simply by attention to what he was eating. 

Also assume you're watching your Vitamin D levels, which should be between 50-70, according to much research.  (Liquid D is much more absorbable than capsules, by the way).

I wonder if your blood has been checked for levels of copper and iron (ferritin) because we also want them, as cancer patients, to be reasonably LOW.  (Transfusions can raise ferritin levels which ideally shouldn't be above 100 and copper ideally lower than your blood serum level of zinc.   Why?  Copper and iron both fuel angiogenesis--cancer spread.  Even if you take a multi-vitamin, make it Formula 950--without copper and iron, specially devised for cancer patients.

Although I don't want to cause undue worry, I also see from  your photo that you are a beautiful redhead.  If it's natural, great; if you're coloring it at a salon, or with anything but a natural henna product such as Light Mountain (avaiable online), you may be getting a high dose of copper in the product.   High-copper foods include regular tea, chocolate, and shellfish of any kind.

I've also read that if we drink a little red wine, those highest in copper are the European varieties, so stay away from French, German, Austrian wines in favor of Spanish, Argentinian, and Italian wines, lower in copper.  Spanish and Sardinian red wines have also been found to lower our blood levels of estrogen--so since many of our tumors ARE homrally driven, you might want to stick to these wines if you drink in moderation.

 What I'd do were I you is have my blood levels of copper, zinc, and ferritin checked at least twice a year; if zinc is high normal and copper is low normal or lower than normal, that's good; but if copper is medium high to high, you might want to watch red dyes and chocolate (often made in copper pots), shellfish, and black teas.  I am hopiong green tea is far lower in copper as it is SO good for us as cancer patients but am still having trouble finding definitive information online.

Hope you're feeling well.  Stay optimistic and enjoy every small pleasure you can: good for the immune system!  Taking curcumin (500mgs x 3 a day with meals) will also keep inflammation minimal.

Best,

Rosey

 

 

 

 

 

 

 

 

 

RoseyR
Posts: 462
Joined: Feb 2011

 

Dear Ddkos,

 

Congratulations on five years NED after diagnosis at a fairly advanced stage of this tumor!

 

What most fascinates me about your message is your claim that  you didn't change anything about your diet or do "drastic supplements."

 

May I ask what your typical diet HAD been that you didn't change?  (Vegetarian--or not?  Lots of sugary snacks--or not?  Any alcohol--or not?)  Many of us, based on some recent research, nearly obsess about what we're eating and drinking.

 

Thanks,

Rosey

NoTimeForCancer
Posts: 412
Joined: Mar 2013

KU68,

I would bet that no two people or cancers are exactly the same.  The first thing anyone here would recommend is that you go to a gynecological oncologist.  They specialize in cancer of the gynecological nature and are the doctors to be treating her.  

The internet can be a scary place, so be careful of some of the things that you find, but the women here will help. 

My two cents:

Take it one step at a time. There are many hurdles with cancer, and there will be tough days in there, but there are plenty of us out here who have made the journey and can "electronically" hold both your hands.

Personally, I am always lifted up by the stories of the women who have had later stages gynecological cancers and are sharing their news.  ANYTHING is possible!  Never, ever, ever, ever, ever, ever, give up.

treezee
Posts: 4
Joined: Nov 2013

thanks NoTimeForCancer needed a pick me up right now

cleo
Posts: 122
Joined: Sep 2009

Don't read the negative stats.   Stage 3/4 August 2007..uterus/bladder/lymph glands.  At the grand old age of knocking on 73 have just welcomed a first grandchild!!! [ Yes we are a traditionally late starter family!!]   She is well worth hanging around for.    Stay positive.

RoseyR
Posts: 462
Joined: Feb 2011

 

Cleo,

 

Have been off the boards for past year--job is really consuming--but will now check in every few weeks.  Am so happy to see how you're still thriving six years after diagnosis.

 

Congratulations!  Did you do chemo and radiation?  And have you been carefully watching your diet--or living as you did before diagnosis?  Exercise?

 

We'd love to know any clues to your longterm NED status!

 

Warmly,

Rosey

 

cleo
Posts: 122
Joined: Sep 2009

Wondered where you were. Pleased to hear all well.  I also watch but get really annoyed when I see that statistics have been quoted to people  - I then go into print!

Radiotherapy only..as told that  if chemo necessary would be palliative only for me. [don't live in the states so treatment may differ]   I started off by eating broccoli etc but soon reverted to usual diet and life as per.   Consider that I have always tried to lead a healthy lifestyle.   Don't like meat but don't consider myself a vegetarian.  Don't have a sweet tooth. Don't smoke or drink [just don't like the taste]    I was furious when told by a nurse of all people how lucky I was to be able to 'get my house in order' and decided that there was no way that I was going to be second best in this..and so far....

elh050885
Posts: 2
Joined: Dec 2013

My Mom has just been diagnosed with carcinosarcoma. There has been a lot of waiting to get information. Her regular Dr just reffered her to a specialist in Indianapolis, which close to where we live. She hasn't gotten much information about it yet.

I of course, looked it up once we got a name, and needless to say was taken back by the severity of it. She does not know how bad it could be, since she has not seen the specialist yet..... and I can't tell her.

We don't have a stage yet. She started have bleeding a month and a half ago. She had the procedure to have the abnormal tissue from her uterus removed and biopsied. At the time the Dr was quite optomistic that it had not spread and a hysterectomy would be all that was likely needed. This was before finding out what kind it was.

I'm really not sure what I'm asking for here, just thought I would look for people that have gone through this.

Thanks

elh050885
Posts: 2
Joined: Dec 2013

I forgot to add-

She is 63, and not in very good physical shape. She has worked very hard as a nurse, and is close to retiring. She wants to be able to go back to work asap, because she doesn't want to loose everything as far as benefits, retirment ect. I've told her not to count on that any time soon, seeing that people with this typically have to have chemo and radiation.

Has anyone been able to continue working through this, after recovery from the hysterectomy?

RoseyR
Posts: 462
Joined: Feb 2011

 

I found carboplatin and taxol (six rounds of it) did NOT make me very sick at all so COULD HAVE WORKED during chemo except for times when my white blood counts were so low that I could have caught a flu or cold too easily.

 

What I'd advise your mom is to see an INTEGRATIVE doctors before chemo who will presribe things to protect her against it: 

 

I was prescribed the following:

 

fish oil (Finest Pure Fish Oil by Pharmax), 4 tsps a day after meals.

 

ProGreens (one scoop in glass of water before breakfast); protects intestines!

 

Glutamine (one tsp in glass of water three times a day before meals).  start the day before chemo and continue first two days OF chemo; prevents neuropathy and joint pain as well as mouth sores.

 

AHCC (a mushroom extract routinely prescribed for all chemo patients in Japan).  Take two three times a day between meals.  Can be expensive; Protocols for Life was the brand I was asked to get; there ARE cheaper versions, however.

 

Melatonin (work gradually up to 20 mgs a night before bedtime), helps chemo to work better and abets sleep.

 

Sylibien (one capsule a day with a meal), protects the liver.  Increase to two a day after chemo is finished and then restore antioxidants as well. 

 

Best,

Rosey

 

 

 

 

NoTimeForCancer
Posts: 412
Joined: Mar 2013

I suspect she was referred to a gyn/onc in Indianapolis and they will probably want the sample analyzed by thier own pathogist.  I live in Indy and was dx with UPSC so there are really good doctors here!  She may/may not need any treatment outside of surgery, but she will find out. 

The nursing job can be very physically demanding, so work?  not sure what she does. 

I had a complete hysterectomy and a TON of lymph node samples!  I was out for two weeks and promised I would go back part time after that due to all the samples.

BE SURE she asks if there is anything to minimize lymphedemia after surgery!!!  I wish I had been given advice from someone to even TRY and avoid it.   

moonghostsnoop
Posts: 1
Joined: Jul 2014

2014-07-23 I am new. Did not see how to start a post?. I found in April of 2014 I had carcinosarcoma. I had the total abdominal hysterectomy. Was bleeding 6 weeks before surgery. Was told no nodes involved and invasion of myometrium of 0.1%. Told stage 1a. Told with 4 rounds of taxol and 4 isofosamide each round being 3 days in a row , one day taxol and isofosamide and the next 2just isofosamide and 4 - 15 minutes of vaginal brachytherapy I'd have an 80% survival. I got all the isofosamide and got through 2 rounds of taxol at a very high dose on both. The taxol caused an emergency for me but I did get 2 out of 4 in me and had to stop that one. I get the radiation in August. I am scared as I have stayed on the net to read through a lot of combined doctor studies. All keep saying even in stage 1 it is back in the lungs etc in 1or2 years. It has helped to see you people are alive last  that for me. I won't know what the last consult is rate will be told me after radiation so will be waiting to hear. The studies named off about every combined chemo and radiation still saying very poor and a lot dead? I did read in one of those isofosamide was considered best with a choice of two or three mixed in. Seems scary and scattered so I am glad to find this site. Please email me etc at atarten@hotmail.com. thanks.

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