Uterine carcinosarcoma, MMMT, survivors ...I would like to from you

I think it was just missed somehow, but sorry from all of us here at this discussion board .  How are you doing J.S?  You were the only person at first who responded to my very first message back in June, then a few other wonderful ladies responded after you but I know how it feels when you post something and really want someone to reply and don't get a response.  I would then set off on a internet search which forced me to educate myself on all these below-the-belt female cancers.  Sometimes I think people just get busy and don't check the board (like myself sometimes). I think others have been going through so much pain and suffering with treatment or recovery that they probably get tired of talking about cancer which I completely understand, God love these people.  Regardless, I wanted to check in with you to see how your doing.  What's new? How are you feeling?

I, too, missed this somehow.  The writer hasn't been on the board for a month.  I do hope she comes back and gives us another chance.

Hi JS, 

My mom has Uterine Carcinosarcoma.  She was diagnosed in November of 2013, had a full hysterectomy soon after.  She began Carboplatin/Taxol chemo in January 2014.  Her next CT Scan showed a golf ball size growth at the base of her spine.  The doctor planned to operate to remove it but scheduled a PET Scan first.  The PET Scan showed small nodules on both of her lungs, so instead of surgery, he immediately put her on a different chemo that consisted of Gemzar/Avastin/Taxotere.  Like you, her doctor said radiation was not an option due to the mulitple locations.

She had another CT Scan in early July that showed very little growth - however, there was still growth.  He basically gave us the option of continuting on the same chemo for another 9 weeks or to try a new chemo.  We want to be as agressive as we can with this, so we decided to try the new chemo, which is Ifosfamide/Taxol.  She has had the most side effects so far with this last drug, but overall she has handled all three very well.

I have researched all of the meds she has tried/is trying and there are some great success stories with all of them.  This cancer is tricky and everyone is different...what works for one may not work for another. 

I do hope you come back to read the comments!!  Best wishes!

nolib1966 said:

I'M HANGING ON!!

When I signed on in June I would check often to see if there was any comments to my entry.  After a few weeks I stopped checking.  Thank you for the private email.  I did read it last week but was in the middle of doctor's appointments.

 THANK YOU ALL FOR YOUR WELL WISHES, SUPPORT, AND PRAYERS

Here's where I am:  July 18 I went to my family doctor because i had the stomach flu.  She felt a mass in my adominal area and ordered a Ct scan, it showed the 5.1cm x 4.0cm was now 15 x 8.4cm.  The other adominal tumor went fron 2.4 cm x 3.2 went to 6.1 x 5.7 cm.  The spots on my liver had doubled in size and the lungs had numerous metastases with 3cm being the largest.  Bare in mind this is only a 6 week period.  MyGP advised me to call my radiation doctor and schedule an appointment.  I did.

My chemo doctor got back the report we had been waiting for to tell us which chemo drug would work for me.  There were 9 different ones( none FDA approved) for my cancer. They were all in pill form.  The insurance will not cover unapproved treatment.

The radiation doctor thought she could shrink the two worrisome tumors in the adominal area and said it could be done at the same time I was taking the chemo pill.  All sounded great except the price on the pill is $8100 a month.  

I am trying to get a hold of a foundation who might be able to help me.

Inbetween I thought maybe I could get operated on to remove the 2 largest tumors and went to see two obgyn/onc.  The both said no.  They both advised against radiation treatment at this time.  The first said he thought cisplatin and ifosfamide for chemo and the second adriamycin..  

After gettin a second and third opinion I now know I want to follow my chemo doctor's advice with the chemo pill that tested good on my speicman and radiation treatments.  

I am hoping to start the radiation tratments this week and the pills when we can get them. 

I don't have a med group to direct me so I am on my own.  I do have a husband who is behind me 150% and family and friends who are there when I want to talk.  I still go to my games(bingo, bunco,  and cards) 5 or 6 times a week.  It helps to get out of the house and see people.  I still ride my stationary bike 1 hour and get 2 oz fresh wheatgrass juice each morning.  I will continue to do it as long as I can.  I don't know what effects I will feel from the chemo or radiation treatments.

 

I am sorry that your abd tumor is growing.  What a difficult decision you have to make when you get different opinions from your doctors.  Good luck with what you decide.  Your pills sound very expensive out of pocket.  I hope some foundTion comes forward to help you.  I hope your radiation goes well this week and you have few side effects.  I hope it shrinks your tumor.  I am glad you have a supportive husband.  I know how important that is.  My husband has been to every appointment, test, lab, and treatment with me.  I an glad you are finding diversions for you to get out and not think about cancer all the time.  Wishing the best for you.  In peace and caring.

nolib1966 said:

I'M HANGING ON!!

When I signed on in June I would check often to see if there was any comments to my entry.  After a few weeks I stopped checking.  Thank you for the private email.  I did read it last week but was in the middle of doctor's appointments.

 THANK YOU ALL FOR YOUR WELL WISHES, SUPPORT, AND PRAYERS

Here's where I am:  July 18 I went to my family doctor because i had the stomach flu.  She felt a mass in my adominal area and ordered a Ct scan, it showed the 5.1cm x 4.0cm was now 15 x 8.4cm.  The other adominal tumor went fron 2.4 cm x 3.2 went to 6.1 x 5.7 cm.  The spots on my liver had doubled in size and the lungs had numerous metastases with 3cm being the largest.  Bare in mind this is only a 6 week period.  MyGP advised me to call my radiation doctor and schedule an appointment.  I did.

My chemo doctor got back the report we had been waiting for to tell us which chemo drug would work for me.  There were 9 different ones( none FDA approved) for my cancer. They were all in pill form.  The insurance will not cover unapproved treatment.

The radiation doctor thought she could shrink the two worrisome tumors in the adominal area and said it could be done at the same time I was taking the chemo pill.  All sounded great except the price on the pill is $8100 a month.  

I am trying to get a hold of a foundation who might be able to help me.

Inbetween I thought maybe I could get operated on to remove the 2 largest tumors and went to see two obgyn/onc.  The both said no.  They both advised against radiation treatment at this time.  The first said he thought cisplatin and ifosfamide for chemo and the second adriamycin..  

After gettin a second and third opinion I now know I want to follow my chemo doctor's advice with the chemo pill that tested good on my speicman and radiation treatments.  

I am hoping to start the radiation tratments this week and the pills when we can get them. 

I don't have a med group to direct me so I am on my own.  I do have a husband who is behind me 150% and family and friends who are there when I want to talk.  I still go to my games(bingo, bunco,  and cards) 5 or 6 times a week.  It helps to get out of the house and see people.  I still ride my stationary bike 1 hour and get 2 oz fresh wheatgrass juice each morning.  I will continue to do it as long as I can.  I don't know what effects I will feel from the chemo or radiation treatments.

 

I am sorry to hear  about what you have endured recently, but am hopeful that the radiation will shrink the tumors in your abdomen and that you will be able to obtain the chemo in pill form.  It is so difficult to make sense of everything when dealing with cancer.  We all hope that the decisions we make are the correct ones and will lead to good outcomes.  I am uncertain how I missed your original post, but I don't recall seeing it.  I wish you the very best with your treatment.

Warm Wishes,

Cathy

nolib1966 said:

update for JS

I am posting for my sister JS.

As of today September 14, she is back home after almost a month away.  She was hospitalized with a colon blockage on Aug 17 and was there until Aug 30 at which time we was moved to a rehab center until September 10.  I am very happy to say the comforts of being home are immeasurable.

While in the hospital the chemo pill started and the radiation was completed.  There will be no scan for a few weeks to let everything start their job.  The radiation is working somewhat as she can use the bathroom now. No real adverse reactions to chemo except slight neuropathy and of course the dreaded nausea.

With extended family coming from all over the United States to assist where needed and give my super star brother-in-law a little relief we are all doing what we can to get through this. Her sons are always near by for anything our special person needs, wants and desires. So far my daughter, our brother and myself have come from Washington State, another sister from Michigan and then Brother and sister-in-law from Alaska will be here shortly after I leave. 

Her friends are so wonderful from bringing jello to cards, visits and phone calls.  They are just as important if not more so in some ways then what family is.  Not to diminish one or the other but they are blessed with being in closer proximity to help and keep her mind busy and keeping up spirits for both of them, sister and brother-in-law.

I can not thank this blog enough.  This gives my sister some place to go where she knows she is not alone.  I tell her that alot but seeing your posts I think makes it more real.  While I am not expeienceing  first hand your illness, I too am going through this along with all loved ones who are praying, cooking, care giving and just plain loving all of you in this horrible disease.

Please remeber none of you are alone. the fight goes on.  One battle at a time, then one day maybe the war will be won.

Thank you all for your good thought prayers and know they are all coming back to you as well.

JS siser

That is great that JS is back home and has so much support.  Support (family and friends) is HUGE in us getting better.  That's even documented in a book I'm reading about a doctor who was diagnosed with brain cancer.  It's called "Anti Cancer  A New Way of Live" by David Servan-Schreiber.   While I don't agree with everything he has said thus far, I do really like what he has to say about how important family and friends and attitude is in getting better.  That helps boost the immune system too. 

I still feel bad that we missed JS's first post.  That gave us all a lesson in being diligent to respond when someone new posts.   Do as much research as you can for your sister on foods to eat, lifestyle changes, make sure she laughs alot and makes memories even though she has the dreaded C word.  It makes life and all the after effects of surgery, radiation, chemo. etc tolerable.

Tell JS we said "Hello" and to keep fighting like a girl.   Take care and thank your family members for supporting your sister.

Jeanette

nolib1966 said:

update for JS

I am posting for my sister JS.

As of today September 14, she is back home after almost a month away.  She was hospitalized with a colon blockage on Aug 17 and was there until Aug 30 at which time we was moved to a rehab center until September 10.  I am very happy to say the comforts of being home are immeasurable.

While in the hospital the chemo pill started and the radiation was completed.  There will be no scan for a few weeks to let everything start their job.  The radiation is working somewhat as she can use the bathroom now. No real adverse reactions to chemo except slight neuropathy and of course the dreaded nausea.

With extended family coming from all over the United States to assist where needed and give my super star brother-in-law a little relief we are all doing what we can to get through this. Her sons are always near by for anything our special person needs, wants and desires. So far my daughter, our brother and myself have come from Washington State, another sister from Michigan and then Brother and sister-in-law from Alaska will be here shortly after I leave. 

Her friends are so wonderful from bringing jello to cards, visits and phone calls.  They are just as important if not more so in some ways then what family is.  Not to diminish one or the other but they are blessed with being in closer proximity to help and keep her mind busy and keeping up spirits for both of them, sister and brother-in-law.

I can not thank this blog enough.  This gives my sister some place to go where she knows she is not alone.  I tell her that alot but seeing your posts I think makes it more real.  While I am not expeienceing  first hand your illness, I too am going through this along with all loved ones who are praying, cooking, care giving and just plain loving all of you in this horrible disease.

Please remeber none of you are alone. the fight goes on.  One battle at a time, then one day maybe the war will be won.

Thank you all for your good thought prayers and know they are all coming back to you as well.

JS siser

Thank you for the update.  So sorry to hear JS had to be hospitalized, but glad she is at home.  Family and friends are so important.  Glad JS has plenty of support from both family and friends.  Hoping the pill and radiation are both helping to reduce the tumors.  Wishing all of you peace and comfort, and the strength to carry on.  In peace and caring.

nolib1966 said:

Well this is JS sister once

Well this is JS sister once again.

 Great news for the day.  She has completed all thearpys at home, no more physical or occupational therapys needed at this time.  She has been out in her yard a little and we even cooked a little dinner together the other night.  Her appetite is still in tact and she is keeping her food down now if we can just get it out the other end we'll be good.  No home nursing neccessary and good spirits abound. The circumference of her abdomin has gone from 104 cm to 94.  So hopefully the tumors are on the run.  She was not able to set up when I first got here and now she sets up and plays a game or two. She has had a bout with canker sores in her mouth but maybe we have that under control as well.

Her chemo pills were supposed to be 4 a day we started at 2 a day, now we are at 3 a day.  The side effects are not as bad as the infusions would have been. The chemo is called Voltrin. it like my sister said is not approved for this type of cancer YET, but God willing and the creek don't rise it'll work in this case.

I again would like to say thank you for this blog. I am going home to Seattle area today, but now that I know this exsits I will be able to read all your entries. My prayers are with all of you and your supporters in this war.  The battles are many and we can only win 1 at a time so choose which battle is the most important today and conquer it. If you are having disagreements with another person or are haboring ill feelings about anything, cut that dog loose, it don't hunt!!! You need your undivided attention on YOUR battle and the rest will take care of itself. and if it doesn't who cares? 

Again thank you all for being here for and with my sister and fighting the fight.  YOU ARE NOT ALONE.  Repeat this daily and beleive it.  YOU ARE NOT ALONE.

JS Sister

 

Dear JS Sister:

Thanks for sharing the news that your sister is doing better.   It is good that she is starting to get up and move a bit and even go outside.   We will keep the prayers coming!   My best to you, JS and your families.

Kathy

nolib1966 said:

Well this is JS sister once

Well this is JS sister once again.

 Great news for the day.  She has completed all thearpys at home, no more physical or occupational therapys needed at this time.  She has been out in her yard a little and we even cooked a little dinner together the other night.  Her appetite is still in tact and she is keeping her food down now if we can just get it out the other end we'll be good.  No home nursing neccessary and good spirits abound. The circumference of her abdomin has gone from 104 cm to 94.  So hopefully the tumors are on the run.  She was not able to set up when I first got here and now she sets up and plays a game or two. She has had a bout with canker sores in her mouth but maybe we have that under control as well.

Her chemo pills were supposed to be 4 a day we started at 2 a day, now we are at 3 a day.  The side effects are not as bad as the infusions would have been. The chemo is called Voltrin. it like my sister said is not approved for this type of cancer YET, but God willing and the creek don't rise it'll work in this case.

I again would like to say thank you for this blog. I am going home to Seattle area today, but now that I know this exsits I will be able to read all your entries. My prayers are with all of you and your supporters in this war.  The battles are many and we can only win 1 at a time so choose which battle is the most important today and conquer it. If you are having disagreements with another person or are haboring ill feelings about anything, cut that dog loose, it don't hunt!!! You need your undivided attention on YOUR battle and the rest will take care of itself. and if it doesn't who cares? 

Again thank you all for being here for and with my sister and fighting the fight.  YOU ARE NOT ALONE.  Repeat this daily and beleive it.  YOU ARE NOT ALONE.

JS Sister

 

SO happy to hear this!!!  "Sister", know that there is NOTHING like the love and support of your family and friends at a time like this.  I CANNOT imagine what my twin sister was thinking but I also know that is who I wanted to come and be with me for after my surgery.  The journey's are different, but they are both very real. 

nolib1966 said:

Well this is JS sister once

Well this is JS sister once again.

 Great news for the day.  She has completed all thearpys at home, no more physical or occupational therapys needed at this time.  She has been out in her yard a little and we even cooked a little dinner together the other night.  Her appetite is still in tact and she is keeping her food down now if we can just get it out the other end we'll be good.  No home nursing neccessary and good spirits abound. The circumference of her abdomin has gone from 104 cm to 94.  So hopefully the tumors are on the run.  She was not able to set up when I first got here and now she sets up and plays a game or two. She has had a bout with canker sores in her mouth but maybe we have that under control as well.

Her chemo pills were supposed to be 4 a day we started at 2 a day, now we are at 3 a day.  The side effects are not as bad as the infusions would have been. The chemo is called Voltrin. it like my sister said is not approved for this type of cancer YET, but God willing and the creek don't rise it'll work in this case.

I again would like to say thank you for this blog. I am going home to Seattle area today, but now that I know this exsits I will be able to read all your entries. My prayers are with all of you and your supporters in this war.  The battles are many and we can only win 1 at a time so choose which battle is the most important today and conquer it. If you are having disagreements with another person or are haboring ill feelings about anything, cut that dog loose, it don't hunt!!! You need your undivided attention on YOUR battle and the rest will take care of itself. and if it doesn't who cares? 

Again thank you all for being here for and with my sister and fighting the fight.  YOU ARE NOT ALONE.  Repeat this daily and beleive it.  YOU ARE NOT ALONE.

JS Sister

 

Please keep us posted!!