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Cervical Carcinosarcoma

kaconsult
Posts: 12
Joined: May 2013

Anyone out there have a diagnosis of Cervical Carcinosarcoma?  I was diagnosed with this in March 2013.  I've been told it's an extremely rare and aggressive form of cancer and there is no information out there for me.  Had a radical hysterectomy and now doing three rounds of chemo with two different drugs, then will do weekly chemo with a third drug along side daily total pelvic radiation for five weeks then three more rounds of chemo with the first two drugs.  Would really love to hear if there are others out there like me.

ccfighter
Posts: 364
Joined: Jan 2012

I am sorry for yourdiagnosis.  What stage were you?  I don't have carcinosarcoma but a different rare cervical cancer called adenosquamous.  I was stage 2a and went through the same treatment you are.  I wish you the best.  Let me know if you have any questions or just feel like venting.  Hugs.

kaconsult
Posts: 12
Joined: May 2013

Hi ccfighter,

I was originally staged at 2a1 but the pathology after surgery was not good. My doctor now says stage 3b.  They really don't know much about this particular cancer so it's really frightening.  They want to hit it with everything.  It will be about six months of treatment. I'll have another full body scan in about six weeks to make sure the cancer hasn't spread any further.

I just had my first chemo treatment 10 days ago.  I had a difficult time but things are slowly getting better now.  I have another treatment in 11 days.  Really not looking forward to it.  I hope it doesn't get harder with each treatment or I don't think I can tolerate it.  They used the chemo drugs called Abraxane (Taxel) and Carboplatin.

Could you tell me about your treatment?  What chemo drugs they used.  Did you have radiation? Are you done?  How long has it been?  I want all the details.

Thank you for responding!

K

ccfighter
Posts: 364
Joined: Jan 2012

It's a tough road but you can do it.  I started with the radical hysterectomy  here the found two lymph nodes affected.  They had broken through the lymph node capsule.  My stage is 2a2 with a 5 cm tumor but my surgical stage would be 3b because of the lymph nodes.  Aft hysterectomy I did 3 rounds of carbo/taxol.  Then I did five weeks of weekly cisplatin with daily radiation to the whole pelvis.  After that I did two high dose bracytherapy.  Then I did two more rounds of carboplatin. I skipped the last as my blood counts were crap.  I finished this treatment in may 2012.  Diagnosed 11/2011.  I had my first pet/ct after treatment inJuly 2012 and theyfound a new lung nodule.  2 months later it was stable.  2 months after that it had grown and there's was a tumor in abdominal wall.  I had them both resected and then started chemo again in feb.  I did carbo/gemzar for 1 round and the switched to cisplatin/gemzar.  I had an allergic reaction to the cisplatin so we switche to oxaliplatin/gemzar.  Did one of those theson the next had another allergic reaction.  My oncologist said no more platinum.  Just had a pet/ct and am waiting for results.  I also did radiation for 5 days to the abdominal wall where the tumor was resected because of close margins.  Let me know if you need anything else.  I know the treatments can be rough hut you will get through.  L-Glutamine powder really helped with the bone pains from taxol.  Hugs.

kaconsult
Posts: 12
Joined: May 2013

Wow, you certainly have been through a lot!  I'm sending good thoughts your way that you will get great news from your pet/ct.  Please let me know when you find out.

I guess what I'm afraid of the most is that the chemo and radiation will not work.  They believe my tumor, also 5 cm, grew in only 6 weeks.  Apparently the cancer I have is extremely aggressive and tends to spread quickly to the lungs, liver and abdomen.  The only info I can find on the Internet is always bad news.

Our cases seem very similar even though the cancer type is different.  They are both rare though, and yours sounds aggressive too.  I'm happy to hear that you are still fighting and surviving.  It gives me hope in this very scary time.

I really had a difficult time with the first round of chemo.  I couldn't get out of bed for 6 days after.  The nausea was never under control and the bone pain was so bad I had to take pain meds for 4 days.  Does it ever get any easier to take?  What is L-glutamine?

Karen

ccfighter
Posts: 364
Joined: Jan 2012

I'm sorry the first round was so hard on you.  I think the first round was the worst for me and then it got a little easier except for the last two.  I didn't suffer from nausea much with the carbo/taxol.  They gave me aloxi by IV before infusion and then had compazine at home if I needed it.  I also had zofran but didn't need that one.  Try to take the antinausa meds before you become nauseous.  Forme, it also helped to have food in my stomach.  I would eat full meals and small snacks and that helped me avoid becoming nauseous.  L-Glutamine powd can be bought at GNC and Walmart and is a dietary supplement the chemo nurses and the radiation nurses told me about.  I had bad bone pain on the first infusion of carbo/taxol, especially in the legs.  Before my second infusion and for the next week I drank the L-Glutamine and didn't have bone pan again.  It was also to help avoid diahrea from the radiation which I also did not experience.  The cisplatin was more nauseating to me.  The first three weeks of cisplatin/radiation was not so bad other than some fatigue.  The last two weeks were a little harder with the nausea and taste changes.  Everyday I was looking for something new to drink as the memory of the beverage the day before made me feel sick.  Once I was done with the cisplatin/radiation I felt great.  But then I had two more carboplatins.  By this point my WBC count was quite low and I was required the neupogen shots.  They made me really sick.  My Platlets also fell and my last treatment was delayed by two weeks.  Since the neupogenwade me so sick my oncologist and I said enough.  I had a lot of treatment.  At that point we had tried our best and had been extremely aggressive with treatments.  Unfortunately I still ended up with recurrences in distant locations, although so far the pelvic disease has been controlled.  I have not experienced much in the way of long term side effects from treatment.  I have a shortened vagina from surgery and radiation, but I have not experienced any bowel issues or lasting neuropathy.  My counts all returned to normal after finishing chemo, the WBC the slowest to rise.  I never became anemic.  I gained weight through treatment.  So far I am lucky in the unlucky circumstance.  Still be treated with curative intent despite the poor prognosis.  Still dreaming of the future, watching my kids grow up and become parents of their own.  You can do this, you can survive this, and remember the Internet does not know everything, and we are each a statistic of one.  Hugs.

kaconsult
Posts: 12
Joined: May 2013

Sorry for the slow response.  Been dealing with an allergic reaction.  Doctors are not sure which medication is causing it but I have a rash everywhere, fever and severe bone pain, again.  I really can't stand this bone pain! All I can do is lay here in pain.  i feel so pathetic. They are pretty sure it's not the chemo drugs fortunately. But now it's a process of elimination to figure it out.  It's so frustrating because nothing ever goes smoothly for me.  I get so many rare side effects and allergic reactions to meds.  I'm even allergic to steroids!  They have to use a special form of the taxol that is super expensive ($15,000 per dose) because the dexamethazone would kill me.  And I still had an allergic reaction to something anyway!   I looked into the l-glutamine and I can't use that either because I'm highly allergic to monosodium glutamate.  I'll stop the pity party now.

I just wanted to tell you I really appreciate you sharing your experiences with me.  It gives me hope that my next treatment might not be as bad the last.  I just hope my next treatment will not be delayed because of this.

Did you get the results from you pet/ct?  I could really use some good news right about now.

K

ccfighter
Posts: 364
Joined: Jan 2012

I don't have my results yet but wanted to let you know I also have the allergies and rare side effects.  I am allergic to the dexamethazone too so I used Allegra as a premed and then saulumedral during infusion.  I did not take anything after infusion.  I was fine for a while and then became allergic to cisplatin/oxaliplatin (platinumdrugs).  We tried premeds with prednisone but I still reacted.  Why does l-Glutamine have MSG in it?!  That is shocking.  It is unflavored.  Anyway,hang in there.  They will get these kinks worked out.  Some people are allergic to certain anti- nausea meds too.  And for me, the worst pain and discomfort I was in came from the neupogen and neulasta.  Hugs. 

kaconsult
Posts: 12
Joined: May 2013

L-glutamine doesn't have MSG in it.  Your body turns the glutamine into glutamate therefore people with glutamate intolerance shouldn't use it.  I may try a small dose of it anyway cuz I'm tired of this pain.  My husband, who has a strong chemistry background, says that it may not bother me.  He said I'm probably more likely allergic to the monosodium rather than the glutamate.  It will be a while before I can try it since I have to figure out what I'm having an allergic reaction to first.

Sending good thoughts and prayers your way that your scans come back clear.  Take care!

K

ccfighter
Posts: 364
Joined: Jan 2012

Ok, thanks for clarifying, that makes sense.  I hope you get everything straightened out and the rest of your treatment goes smoothly.  Let us know how your doing.  Hugs.

 

BTW-mt pet/ct looks good.  No new disease but a questionable area on the small bowel.  Hoping it's just imflamation from my surgery in dec where they resected part of my small bowel.  I see my oncologistThursday and get her take.  Got my fingers crossed.

kaconsult
Posts: 12
Joined: May 2013

Great!  That sounds like good news to me.  Will be thinking about you on Thursday and I will keep my fingers crossed for you too.

I have a couple of questions.  How often do you have the pet/ct scans done?  I keep forgetting to ask my doctor.  I only know that they will do one before I start radiation therapy.

Did you continue working during your treatments?  Are you able to work now?  I'm still working but it's already so very hard I'm beginning to think I won't be able to handle it as my treatments progress.  It took me all day to get about 3 hours of work done today and I couldn't work at all yesterday.  My brain feels fuzzy most of the time and its difficult to concentrate sometimes.  Did that happen to you?

K

ccfighter
Posts: 364
Joined: Jan 2012

I had a pet/ct done when I was first diagnosed to evaluate for spread prior to surgery.  That was in November of 2012.  I did not have another until July 2012 a few months after I finished treatment.  The radiation oncologist did a ct scan before I started radiation therapy for planning the radiation.  Since my pet/ct found aknew lung nodule in July, I had another ct scan in September which showed the nodule stable.  In November I had a ct done of abdomen and pelvis which showed the abdominal wall tumor.  A week or so after that I had another pet/ct to determine if the lung nodule and the abdominal wall tumor were cancer.  They were.  

If I hadn't had the lung nodule show up I believe I would have had the post treatment pet/ct and then ct every 6 months for a few years.  They ususlly wait three months afterfinishing radiation to do a pet/ct since the inflammation from radiation can cause false positives for that long.  After treatment I see my gyn/onc every three months for pelvic exams, paps, ect.  

I do not work.  I stay home with three kids.  When I was diagnosed they were 4,6, and 8.  They are now 5,8 and 10.  It took us a while to adjust, but was able to keep up with most things.  There were 4-6 days out of every cycle where I was pretty tired and relied on my husband to help get the dinner made and the kids fed and bathed.  My youngest was still inpreschool at the time but luckily we have neighbors who kids were in thsame class and would keep her for a while after school so I could rest.  But other than those days I was pretty much business as usual, getting to bed a little earlier and sleeping a little later but otherwise pretty much my normal life.  When I started cisplatin/radiation the nausea was a little worse as well as the fatigue.  The chemo was every week instead of every three weeks so there was not as much time to recover.  Throw in the daily radiation And you will become quite tired.  But it is doable. If you are working from home you will probably be able to keep up most of the time, needing a few days here and there after chemo, and perhaps a lighter schedule during the radiation, but you won't be totally down and out.  Hope that helps.

 

After surgery, where did they find cancer?  We're they able to resect it all andadjuvant treatment is to clean up microscopic disease or could your surgeon not get it all?

kaconsult
Posts: 12
Joined: May 2013

Thanks, it really helps to hear what you have been through.  For me, everything has happened so quickly.  I went from being diagnosed to surgery less than two weeks later then on to chemo six weeks later.  It's been almost two months since I was diagnosed.  Everything still feels very new to me and like I said before, there is no information out there on the type of cancer I have except that most people don't live beyond 18 months because of how very aggressive it is.  My pathology report has a note in it that says there are approximately 23 cases of this type of cervical cancer in the world's literature.  So me finding information has truly been difficult.

My surgical pathology report is so long and difficult for me to understand.  Here is a little of what it says:   "Carcinosarcoma, with angiolymphatic invasion, cervix" and "Metastatic adenocarcinoma involving 1/9 right pelvic lymph nodes".   It also says the distance of tumor to closest margin is 1mm.  I'm assuming this is why I will have total pelvic radiation.  I'm assuming the chemo is to clean up whatever is out there.  My doctor told me this cancer spreads quickly to the lungs, liver and abdomen so they will be very agressive in the treatment.  They can't tell me how long it's been metastatic which is why they will do the pet/ct in about month.  They did a pet/ct before surgery and it came back negative so this is good.

K

ccfighter
Posts: 364
Joined: Jan 2012

Sounds alot like my path report, but the histology was adenosquamous.  It too is very aggressive and everything that I have read about it says that recurrence is quick and it carries a very poor prognosis.  My original pet/ct was clear except for two lymph nodes.  My oncologist removed them and took out 4 more which were negative.  I think I had pretty close margins also.  The pelvic wash they did was also positive for malignant cells.  But, I just hit 18 months since diagnosis and am still here, and may even be without evidence of disease, which, for my kind of aggressive cancer is quite miraculous.  I think that you will be just fine.  Its a hard road but one that has been walked by many before, and you will come out the other side no problems.  You are getting the most aggressive treatment available too.  Where are you located?  Im in northern Virginia.

kaconsult
Posts: 12
Joined: May 2013

I was thinking the same thing, our cases are so similar.  You are the only person I've found that even comes close.  I'm so happy and grateful that you responded to my post.  I think it might just be your positive attitude that helps me get through this.

I live in Northern California, most people call it Silicon Valley because of all the technology that is developed here.  I have two handsome boys with beautiful souls (ages 18 and 20) both going to college locally and still living at home.  My husband of almost 22 years has been working in Seattle for the past two weeks.  He comes home Friday and I can hardly wait to see him.  It's been really hard dealing with this by myself.  He's home for a week then he goes back to Seattle for two more weeks.  Unfortately that will be his schedule for a while.  Two weeks there, one week home.  Hopefully he will be done with this job in July and can stay home with me for a while.  I'm a financial consultant so I can work from home most of the time, 52 years old, and up until a few months ago I looked and felt like I was 40.  Now I feel like I'm at least 70.  I'm guessing you're quite a bit younger than me based on your children's ages. I've cut back my client base quite a bit already.  I shouldn't have to work more than 25 hours a week but I'm having trouble keeping up with even that.  I may have to cut back again.

Did you lose all your hair?  Mine started falling out quite a bit yesterday and my scalp is always cold and sore.  Did that happen to you?  Every time I lift my head off of the pillow I leave a bunch of hair behind.  I think it will all be gone in less than a week.  I cut all of my hair off just before surgery.  It used to be so long, down past my butt. I had more than 3 feet cut off and I sent it to a company that makes free wigs for women with cancer.

 

 

ccfighter
Posts: 364
Joined: Jan 2012

I'm 34, diagnosed at 32.  I feel like I'm 70 half the time also.  My hair came out about 2 1/2 weeks after my first infusion.  Mine wasn't quite as long as yours, but down to the center of my back and I also cut it and sent it to locks of love.  Least I could do.  My husband gave me a buzz cut once the hair started shedding like crazy.  Easier than cleaning it up all over the place, sleeping in it, getting it stuck in the shower drain.  And yes, if was quiteuncomfortable to lose my hair.  Nobody told me it would be painful.  My whole scalp was sore.  Once it was all out it got better.  I was bald through winter and wore a soft comfy hat that started to seem like my own hair after a while.  It has been 15 months of growth now and my hair is about 4 inches long.  It grew back the same as it always was, curly and brown.  Now the hair down yonder is a different story.  The radiation has left mypubic area patchy and ridiculous looking.  I don't really care, but I am well aware of its absurdity.  And random grey hairs to boot.

It must be hard going through this with your husband working a distance away.  I do hope he is home soon to help and support you through this.  My husband picked up a lot of slack while I was going through treatments.  He was able to work from home alot which really helped.  And just having someone there with you is also a tremendous help.  But, you do have your kids who I am sure are there for you when you need them.  Please keep in touch and let me know how things go with you and I will do the same.  Hugs.

kaconsult
Posts: 12
Joined: May 2013

Your last post had me laughing so hard.  Yeah, I pretty much lost all of the "hair down yonder" already.  I didn't realize that the radiation could change your hair growth there either.  It looks like my eyelashes are going to follow.  My eyelids have been sore and puffy the last two days and I'm starting to lose the lashes.

You are way too young to have gone through so much.  You kind of expect that something like this may happen when you're my age.  I was 34 when I gave birth to my youngest son and I can't imagine what it would have been like to deal with all of this back then.  It really says a lot about who you are as a person that you can remain so positive and so very helpful and encouraging to others as well.  I want to thank you for being there for me and I'm looking forward to hearing more from you.  How did your doctor visit go?  Good news I hope.

FourBee's picture
FourBee
Posts: 15
Joined: May 2013

Hi, I am also 52, get treated at UCSF and this photo of me was taken in Palo Alto (I am in the East Bay) and had surgery in San Jose. I wondered if you saw this journal report? http://link.springer.com/content/pdf/10.1007%2Fs13691-012-0080-8.pdf#page-1 If I were you I would remain very hopeful as each case is different and people respond to a vast array of conventional and unconventional treatments. Copper chelation is being found to be effective in many aggressive cancers. My former gyn onc's mom died of a sarcoma so he is pretty aggressive and in the South Bay if you need a second opinion. The group thesecondopinion.org in San Francisco is free to Calfornia residents although I think UCSF and Stanford (particularly UCSF) if you do not go there would be a good choice.

I know your husband travels a lot and that this is a scary time. If you want to meet up sometime let me know. While my cancer is different than yours I had an advanced case and am now doing well. You can message me privately. Best wishes.

kaconsult
Posts: 12
Joined: May 2013

Hi FourBee,

I'm pretty new to this site.  Is there a way to send a message privately?  I would love to speak with you to learn of your experiences.  My doctors are all at Palo Alto Medical Foundation.  I get chemo at the Fremont site.  I'm pretty sure we live near each other.  It would be so nice to speak with someone locally.  Please let me know how to send you a private message.

FourBee's picture
FourBee
Posts: 15
Joined: May 2013

If you look to your left on the right tab there is a section that says CSN. Next to the last category is CSN email. I saw that you were new so figured I should contact you here. If you click directly on my name FourBee it takes you to another page where mid-page it says you can message me directly. Try that. I will get an email in my regular email box telling me that I have a message from you. Give me a number or email to reach you.

I was at the Palo Alto Medical Foundation and now live in Oakland and went to UCSF. Couldn't be more grateful to have gone there. Not as clean or lovely but I am pretty confident in my gyn onc. I had a good gyn onc surgeon based in Mtn. View area and Los Gatos (saw him in both places): Dwight Chen. Super smart, hard to get an appointment with but he saw me straight away. His mom died of uterine sarcoma. Who is your gyn onc?

There is a woman now whose mom has uterine sarcoma on the uterine discussion board. Different cancer but similar treatment options. You may want to contact them under the heading IVb. Hope to hear from you.

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