Mom diagnosed with stage 4b- anyone else??

TraL

I guess I'm just wanting to hear experience from others.

My mom was diagnosed on Valentine's Day with stage 4b, grade 1 uterine cancer (her surgeon said he was shocked to see it graded 1 since it had spread so far)- they told me it was in her uterus and omentum.  When we had the CT, it was also found in her

lungs and lymph nodes.

Currently, we've had three chemo treatments (Carbo/Tax). 

My mom has always been so strong.  They've told us she may only have 1-3 years to live. 

She really seems to have no symptoms other than being slightly out of breath when she walks across the floor.  Her doctor told us that was probably from the chemo.

I think I have so many questions....it's hard to understand how she can be so sick and look so healthy.  She does sleep more but we're also told that is from the chemo.

She is scheduled to have another CT done in three weeks. 

We were initially told she would have 6 of these treatments.  What comes next??  They talked like she would just be sent home and have a repeat CT in 6 months.  Maybe I misunderstood?  The last chest x-ray showed the disease had gotten slightly smaller.  

Also, they did a tumor marker which showed 11, down from 13 at the first treatment.  They acted like this was positive but as I read on the internet, this might not very accurate??

I have so many feelings....I feel like my world will never be the same. 

I have felt encouraged by reading so many of the stories here....

 

 

Kaleena

Dear TraLSorry to hear about

Dear TraL

Sorry to hear about your mom.    I am not sure why they said 1-3 years.    With regard to the tumor marker, normal range for everyone is 39 or under.   However, please note that the CA125 is not an indicator for everyone.  It is not an indicator for me.

 

The treatment your mom is receiving is usually the standard Carbo/Taxol.  And it really doesn't matter what grade or stage you have.   Some physicians though do different treatments.   Also, radiation can be given later too.   CT scans are usual along with some of these:  PET Scan; PET/CT; X-rays; MRI; barium enima; 

Radiation can be at different locations and/or internal.   I had brachytherapy (internal).   Do not be alarmed at these tests.

 

Tiredness and fatigue are a big side effect of treatment (both chemo and radiation).   Also, always be sure to ask as many questions that you may have.  No question is too small to ask.  Further, if your mom is uncomfortable with her treatment, it is perfectly ok for her to seek a second opinion.

 

Further, you may ask what is the difference between a CT scan and a PET Scan?   A PET scan shows "active" cancer cells.   A CT scan shows tumors, etc., surgical changes.

 

I hope that this is not too much info for you.   Check out other posters here.   

 

My best to you and your mom!

 

Kathy

 

P.S.  Please watch what internet sites you read.  So many are so out of date and are not accurate.

txtrisha55

Sorry to hear about your

Sorry to hear about your mom.  But glad you found this site.  It does have a lot of information on here and some really great women and other family members that can help with support.  Chemo treatments does make you tired this usually happens about the end of day 2 and usually last about 4 days, or at least it did with me.  I worked during my chemo treatments except for thos days I was too tired then stayed home in bed.  No one drs included can predict how much time we have.  My outlook was to try and get myself to a positve place and outlook and live everyday to the fullest.  I decided that I would not let my cancer get the best of me.  I will be praying for your mom and family to help get you all through this.  trish

kdb1433

I understand..

Hi TraL, I can relate very much to what you are going through right now. I'm new to this message board but figured it would help clear my mind a bit by getting my thoughts out and hearing other stories. So my Mom was diganosed with Stage 4 uterine cancer Docs said its a very aggressive cancer back in August..we decided to go to one of the best treatment centers in the country at Sloan in New York..when she was first diagnosed she had crazy symptoms she developed acsites very very high heart rate it became hard for her to walk and she developed a DVT in her leg we just got through 6 months of chemo treatment every 3 weeks and Docs wanted to contine with more treatment, unfortunately it's taken such a hard toll on her body her levels drop so bad to the point where she has been hospitalized 4 times throughtout her whole therapy..like your Mom my Mom sleeps a lot shes on lots of medications now but Docs say they want to stop chemo and try an alternative therapy called hormonal, we received horrible news saying her time is even more limited to live so its very heartbreaking and overwhelming..I hope you'll have better results as your Moms treatment goes on, everyone does react differently to treatment so don't give up hope 

FourBee

Second Opinion

Slow down. I know that you are scared but you said something really important and that is that your mom looks healthy. If she does not have a lot of co-morbidity issues she may well be fine. I know because I have/had stage IVB Grade I uterine adenocarcinoma. Now the question is whether her pathology report was correct especially since the surgeon (a gyn onc I hope) was alarmed. Generally, Grade I cancers don't metastacize quickly. Perhaps you need another pathologist to confirm the histology? I had that done and had my cancer tested for hormone sensitivity. Also research clinical trials. Is she getting treatment at a large teaching hospital? Wishing you and your mom the best.

niklu1221@yahoo.com

FourBee said:

Second Opinion

Slow down. I know that you are scared but you said something really important and that is that your mom looks healthy. If she does not have a lot of co-morbidity issues she may well be fine. I know because I have/had stage IVB Grade I uterine adenocarcinoma. Now the question is whether her pathology report was correct especially since the surgeon (a gyn onc I hope) was alarmed. Generally, Grade I cancers don't metastacize quickly. Perhaps you need another pathologist to confirm the histology? I had that done and had my cancer tested for hormone sensitivity. Also research clinical trials. Is she getting treatment at a large teaching hospital? Wishing you and your mom the best.

Uterine carcinosarcoma stageIV b

Hello,

My mother was recently diagnosed with uterine carcinosarcoma stage IVb that has spread to her spine. Her doctor said that it is better that she does not have surgery to improve her back and he also said that she seems too weak for a clinical trial of chemo. I really want a second opinion for my mother because so far it has not spread to her lungs or brain, she doesn't have any numbness and her bowels are normal as well as  her appetite. I think that she should at least try the chemo. Does anyone have any information or opinion on my mother's situation?

 

D

FourBee

niklu1221@yahoo.com said:

Uterine carcinosarcoma stageIV b

Hello,

My mother was recently diagnosed with uterine carcinosarcoma stage IVb that has spread to her spine. Her doctor said that it is better that she does not have surgery to improve her back and he also said that she seems too weak for a clinical trial of chemo. I really want a second opinion for my mother because so far it has not spread to her lungs or brain, she doesn't have any numbness and her bowels are normal as well as  her appetite. I think that she should at least try the chemo. Does anyone have any information or opinion on my mother's situation?

 

D

Very rare and aggressive

This is a very rare and aggressive cancer. Seek a second and/or third opinion right away. Chemo is usually advised in these cases unless there are co-mobidity issues preventing it. Does your mom have a heart condition? Kidney problems? Is she diabetic? Has high blood pressure? Do everything you can to see some gynecological oncologists to review her case. Best wishes.

jazzy1

niklu1221@yahoo.com said:

Uterine carcinosarcoma stageIV b

Hello,

My mother was recently diagnosed with uterine carcinosarcoma stage IVb that has spread to her spine. Her doctor said that it is better that she does not have surgery to improve her back and he also said that she seems too weak for a clinical trial of chemo. I really want a second opinion for my mother because so far it has not spread to her lungs or brain, she doesn't have any numbness and her bowels are normal as well as  her appetite. I think that she should at least try the chemo. Does anyone have any information or opinion on my mother's situation?

 

D

niklu

Tend to agree with another poster about any prior health issues which would  make chemo difficult.  I as well have the MMMT (carcinosarcoma), but luckily mine was not in my bones or any major areas....only 1 pelvic lymph node.  

Definitely do not listen to ONE DOCTOR...get another opinion or two.  Might I suggest finding a GYN-ONCOL with experience with MMMT...you'll have the best of all worlds.  I've always been on side of NEVER GIVE UP, unitl one is under the grass.  In your case with mom, you've just started and the first doc told you basically, DO NOTHING.  Get back up and go to bat for your dear mother and at least get a second opinion.  They want you to stop before you've even got thru the gate...not right.

Will agree this cancer is very aggressive, but you'll find many women who are NED (no evidence of disease) for 4+ years.  

Good luck to you and your mom....

Jan

P.S.  Do NOT Google on our cancer as the research out there is quite outdated.  

 

 

niklu1221@yahoo.com

FourBee said:

Very rare and aggressive

This is a very rare and aggressive cancer. Seek a second and/or third opinion right away. Chemo is usually advised in these cases unless there are co-mobidity issues preventing it. Does your mom have a heart condition? Kidney problems? Is she diabetic? Has high blood pressure? Do everything you can to see some gynecological oncologists to review her case. Best wishes.

Thank you for the suggestion.

Thank you for the suggestion. My mother has type 1 diabetes and high blood pressure both both are managed very well. Her oncologst said that it's possible that the chemo would be fatal. On the more positive side I would assume that my mother is strong enough for chemo because she has no heart problems, bladder control problems and still has a healthy appetite. the only problem is that due to her back pain, it is difficult for her to sit up for a long period of time. I will still seek another opinion.

 

D

pamanzano

jazzy1 said:

niklu

Tend to agree with another poster about any prior health issues which would  make chemo difficult.  I as well have the MMMT (carcinosarcoma), but luckily mine was not in my bones or any major areas....only 1 pelvic lymph node.  

Definitely do not listen to ONE DOCTOR...get another opinion or two.  Might I suggest finding a GYN-ONCOL with experience with MMMT...you'll have the best of all worlds.  I've always been on side of NEVER GIVE UP, unitl one is under the grass.  In your case with mom, you've just started and the first doc told you basically, DO NOTHING.  Get back up and go to bat for your dear mother and at least get a second opinion.  They want you to stop before you've even got thru the gate...not right.

Will agree this cancer is very aggressive, but you'll find many women who are NED (no evidence of disease) for 4+ years.  

Good luck to you and your mom....

Jan

P.S.  Do NOT Google on our cancer as the research out there is quite outdated.  

 

 

Hi. I am sorry to see all of

Hi. I am sorry to see all of you posting here. I am quite sorry for myself as well. Nonetheless, the support you've provided for people out there looking for information and God knows what has been very exceptional, and comforting.

 

My mom was diagnosed with stage IV-B endometriod adenocarcinoma, grade 1-2. She's on aggressive chemo now but recently her drs changed the drug to Caelyx because the tumors aren't responding to the first drug. Has anyone ever heard of it? This is such a hard time for all of us because mom is in Ireland, getting her treatment there while we are here in the PI. I have so many questions in mind which I am hoping people here can shed some light.

 

She's recently transfused because her hemoglobin is very low. I take it as a side effect of Caelyx. She's almost always asleep because of her pain meds. I don't know what to do from here. I'll be with her in Ireland soon and I plan to give her foods that are known to fend off the cancer cells. However I know only one which is sour sop. Do you have any suggestions for this?

 

I would appreciate all your replies. I am at lost. Mom is a single parent and she's the breadwinner of our family. I don't have any siblings but I do have a kid. Thank you all.

 

BLESSINGS!

pinky104

Stage IVB also

TraL,

I am a survivor of uterine cancer stage IVB.  Mine was grade 3 (UPSC).  I am exactly 3 years out from surgery this month, and I have no evidence of disease.  I guess I'm a lucky person because my cancer is considered IVB because it went outside the pelvis, but it only went from the uterus to the ovaries, omentum, and ilium, but not into any lymph nodes.  I've had 2 CT scans since surgery, both clear except for a benign appearing liver cyst and an MRI because the oncologist diagnosed me with hemochromatosis, which can cause other cancers.  All those were negative.  My CA-125 was 94 before surgery and is now 7.9. 

When I heard that I had stage IVB, I was sure that would be terminal, but I was reassured by an office person at my cancer center who told me that they have a lot of people who have been coming in there for years who've had stage IV.  Now I'm one of them.  So don't give up hope!

My only treatment was 6 rounds of carboplatin and taxol 3 weeks apart (besides the surgery, of course).  I had shortness of breath because of chemo-induced anemia, but I had a transfusion for that halfway thru chemo (and I'd had 2 units of blood 2 days after surgery because I'd lost so much blood). I'd also had my gallbladder and appendix removed in the surgery (gallstones were also found on my CT scan before surgery).

I thought you'd like to know that it is possible to survive this stage of cancer. 

Golov003@gmail.com

pinky104 said:

Stage IVB also

TraL,

I am a survivor of uterine cancer stage IVB.  Mine was grade 3 (UPSC).  I am exactly 3 years out from surgery this month, and I have no evidence of disease.  I guess I'm a lucky person because my cancer is considered IVB because it went outside the pelvis, but it only went from the uterus to the ovaries, omentum, and ilium, but not into any lymph nodes.  I've had 2 CT scans since surgery, both clear except for a benign appearing liver cyst and an MRI because the oncologist diagnosed me with hemochromatosis, which can cause other cancers.  All those were negative.  My CA-125 was 94 before surgery and is now 7.9. 

When I heard that I had stage IVB, I was sure that would be terminal, but I was reassured by an office person at my cancer center who told me that they have a lot of people who have been coming in there for years who've had stage IV.  Now I'm one of them.  So don't give up hope!

My only treatment was 6 rounds of carboplatin and taxol 3 weeks apart (besides the surgery, of course).  I had shortness of breath because of chemo-induced anemia, but I had a transfusion for that halfway thru chemo (and I'd had 2 units of blood 2 days after surgery because I'd lost so much blood). I'd also had my gallbladder and appendix removed in the surgery (gallstones were also found on my CT scan before surgery).

I thought you'd like to know that it is possible to survive this stage of cancer. 

Where were you treated? My

Where were you treated? My mom had surgery yesterday for serous with omental band umbilical involvement, dyou you have radiation too

Golov003@gmail.com

pinky104 said:

Stage IVB also

TraL,

I am a survivor of uterine cancer stage IVB.  Mine was grade 3 (UPSC).  I am exactly 3 years out from surgery this month, and I have no evidence of disease.  I guess I'm a lucky person because my cancer is considered IVB because it went outside the pelvis, but it only went from the uterus to the ovaries, omentum, and ilium, but not into any lymph nodes.  I've had 2 CT scans since surgery, both clear except for a benign appearing liver cyst and an MRI because the oncologist diagnosed me with hemochromatosis, which can cause other cancers.  All those were negative.  My CA-125 was 94 before surgery and is now 7.9. 

When I heard that I had stage IVB, I was sure that would be terminal, but I was reassured by an office person at my cancer center who told me that they have a lot of people who have been coming in there for years who've had stage IV.  Now I'm one of them.  So don't give up hope!

My only treatment was 6 rounds of carboplatin and taxol 3 weeks apart (besides the surgery, of course).  I had shortness of breath because of chemo-induced anemia, but I had a transfusion for that halfway thru chemo (and I'd had 2 units of blood 2 days after surgery because I'd lost so much blood). I'd also had my gallbladder and appendix removed in the surgery (gallstones were also found on my CT scan before surgery).

I thought you'd like to know that it is possible to survive this stage of cancer. 

Treatment center

My mom also has omental and umbilical involvement but gross disease was removed in surgery, she is being treated at Yale, can I ask where you were treated? 

HellieC

pamanzano said:

Hi. I am sorry to see all of

Hi. I am sorry to see all of you posting here. I am quite sorry for myself as well. Nonetheless, the support you've provided for people out there looking for information and God knows what has been very exceptional, and comforting.

 

My mom was diagnosed with stage IV-B endometriod adenocarcinoma, grade 1-2. She's on aggressive chemo now but recently her drs changed the drug to Caelyx because the tumors aren't responding to the first drug. Has anyone ever heard of it? This is such a hard time for all of us because mom is in Ireland, getting her treatment there while we are here in the PI. I have so many questions in mind which I am hoping people here can shed some light.

 

She's recently transfused because her hemoglobin is very low. I take it as a side effect of Caelyx. She's almost always asleep because of her pain meds. I don't know what to do from here. I'll be with her in Ireland soon and I plan to give her foods that are known to fend off the cancer cells. However I know only one which is sour sop. Do you have any suggestions for this?

 

I would appreciate all your replies. I am at lost. Mom is a single parent and she's the breadwinner of our family. I don't have any siblings but I do have a kid. Thank you all.

 

BLESSINGS!

Sorry - just seen your question about Caelyx

I'm so sorry - I haven't been on the boards for a while and have just seen your question about Caelyx.  I believe that it is a liposomal form of form of Doxorubicin, which means that the drug is wrapped in a lipid (fatty) coat, which makes it less damaging to the cardiovascular system.  It has well established use as a chemo regimen for uterine cancer and, in the UK where I live, it is frequently used as the second line chemo.

I hope it works for your Mum.

Kindest wishes
Helen