I need any Grade 3, Stage 4 Endometrial cancer survivors out there to support my sister

crystalblue1208

Eight weeks ago my sister was told she had grade3 1A Endometrial cancer but now the cancer has spread and turned our condition to Stage 4B. She is only 31 years old and devastating and keeps wondering how long she could still live and how to deal with her pelvic pain and chemo..etc. If you are one of the survivors, could you post or email your stories so I could show and use your example to encourage my sister?

Thank you so much!

txtrisha55

Stage 3C1 in Dallas, TX
I was dx with stage 3C1 Carcinosarcoma Tumor stage 1A) invaded approximately 0.3 cm of background endometrium into a 3.0 cm thick myometrium. It was also found in 1 Regional pulvic lumph node which made it go to stage 3c the 1 is how many lymph nodes was involved. They removed the Omentum, tubes, ovaries, cervix, uterus and 10 pelvic lymph nodes. This was in April last year. Surgery was in April, started Chemo in May through August. It has been a year since surgery and I am still here. Sorry to here about your sister but there are other ladies on this site that are still around also. Tell her that it is the quality of life that is worth fighting for. No one has a date stamp to say this is it. God is always there to help carry the load when it gets to much. Lots of people are usually around to help carry the load too. Do not read the Internet because most of the stuff is old and out dated and very scary. I will keep her & her family in my prayers. trisha

crystalblue1208

txtrisha55 said:

Stage 3C1 in Dallas, TX
I was dx with stage 3C1 Carcinosarcoma Tumor stage 1A) invaded approximately 0.3 cm of background endometrium into a 3.0 cm thick myometrium. It was also found in 1 Regional pulvic lumph node which made it go to stage 3c the 1 is how many lymph nodes was involved. They removed the Omentum, tubes, ovaries, cervix, uterus and 10 pelvic lymph nodes. This was in April last year. Surgery was in April, started Chemo in May through August. It has been a year since surgery and I am still here. Sorry to here about your sister but there are other ladies on this site that are still around also. Tell her that it is the quality of life that is worth fighting for. No one has a date stamp to say this is it. God is always there to help carry the load when it gets to much. Lots of people are usually around to help carry the load too. Do not read the Internet because most of the stuff is old and out dated and very scary. I will keep her & her family in my prayers. trisha

Thanks for posting and
Thanks for posting and making us feel not alone.

txtrisha55

crystalblue1208 said:

Thanks for posting and
Thanks for posting and making us feel not alone.

Where are both of you located?
Also if you feel comfortable enough a first name would be nice. It makes it easier to include at least a name in my prayers. I usually just say "Bless and keep all the ladies on the Cancer Web site NED or provide Your loving Grace to them for all their trials and tribulations for what they are experiencing in their journeys." There is always someone on here that can and will help support the both of you during this journey. Unfortunatly nether of you are alone in this fight, there are to many of us on here in the same fight. It does help to know that you are not fighting alone though. trish

concernedspouse

Stage IVB Grade 3
My wife(who just happens to be one of the finest people in the world) went from Stage I grade 2 to Stage IVB grade 3 in one month. We were as devastated as you and your sister. Surgery was last June, chemo started at end of July (carbo/taxol. This was well tolerated and because of a leveling off of CA125 we went through 11 treatments. As of today, while the physical exams are normal and her GYN/ONCS characterizes her as stable, the carbo/taxol has stopped working, the CA125 is rising, and there are bone metastases. Pending any other options that we can find, hormone therapy is next.

We also are looking for any experience of others, help, or ideas we can get to try to get us to a stable state. It is unfortunately a difficult journey where sometimes the experiences of people like on this board can be sometimes as helpful, if not more so, than two good GYN/ONCS.

I keep telling my wife that somebody has to be in the positive percentage and that we are going to do everything to get her there.

paris11

concernedspouse said:

Stage IVB Grade 3
My wife(who just happens to be one of the finest people in the world) went from Stage I grade 2 to Stage IVB grade 3 in one month. We were as devastated as you and your sister. Surgery was last June, chemo started at end of July (carbo/taxol. This was well tolerated and because of a leveling off of CA125 we went through 11 treatments. As of today, while the physical exams are normal and her GYN/ONCS characterizes her as stable, the carbo/taxol has stopped working, the CA125 is rising, and there are bone metastases. Pending any other options that we can find, hormone therapy is next.

We also are looking for any experience of others, help, or ideas we can get to try to get us to a stable state. It is unfortunately a difficult journey where sometimes the experiences of people like on this board can be sometimes as helpful, if not more so, than two good GYN/ONCS.

I keep telling my wife that somebody has to be in the positive percentage and that we are going to do everything to get her there.

Cancer as a chronic illness
Hi my friends,

Jan. 2007 DX Stage 1A Grade 2 Surgery

Dec 2007 Recurrence with mets to abdomen and liver Stage IV B Carbo/Taxol

July 2010 2nd recurrence one lymph node IP Chemo


No problems since July 2010

Where do you live? There are many fine oncs out there.

Good luck,

onnie

paris11

concernedspouse said:

Stage IVB Grade 3
My wife(who just happens to be one of the finest people in the world) went from Stage I grade 2 to Stage IVB grade 3 in one month. We were as devastated as you and your sister. Surgery was last June, chemo started at end of July (carbo/taxol. This was well tolerated and because of a leveling off of CA125 we went through 11 treatments. As of today, while the physical exams are normal and her GYN/ONCS characterizes her as stable, the carbo/taxol has stopped working, the CA125 is rising, and there are bone metastases. Pending any other options that we can find, hormone therapy is next.

We also are looking for any experience of others, help, or ideas we can get to try to get us to a stable state. It is unfortunately a difficult journey where sometimes the experiences of people like on this board can be sometimes as helpful, if not more so, than two good GYN/ONCS.

I keep telling my wife that somebody has to be in the positive percentage and that we are going to do everything to get her there.

Cancer as a chronic illness
Hi my friends,

Jan. 2007 DX Stage 1A Grade 2 Surgery

Dec 2007 Recurrence with mets to abdomen and liver Stage IV B Carbo/Taxol

July 2010 2nd recurrence one lymph node IP Chemo


No problems since July 2010

Where do you live? There are many fine oncs out there.

Good luck,

Connie

crystalblue1208

paris11 said:

Cancer as a chronic illness
Hi my friends,

Jan. 2007 DX Stage 1A Grade 2 Surgery

Dec 2007 Recurrence with mets to abdomen and liver Stage IV B Carbo/Taxol

July 2010 2nd recurrence one lymph node IP Chemo


No problems since July 2010

Where do you live? There are many fine oncs out there.

Good luck,

onnie

paris11

Thank you so much for your posting and I will share your story with my sister. We live in Washington DC area.

crystalblue1208

paris11 said:

Cancer as a chronic illness
Hi my friends,

Jan. 2007 DX Stage 1A Grade 2 Surgery

Dec 2007 Recurrence with mets to abdomen and liver Stage IV B Carbo/Taxol

July 2010 2nd recurrence one lymph node IP Chemo


No problems since July 2010

Where do you live? There are many fine oncs out there.

Good luck,

Connie

paris11

Hi Connie,

Had you experienced any severe pain in the past? My sister is a strong woman and she is willing to fight and become many fine ones out there as you. However, the severe pelvic pain really bothers her and I am so afraid this will never go away.

crystalblue1208

concernedspouse said:

Stage IVB Grade 3
My wife(who just happens to be one of the finest people in the world) went from Stage I grade 2 to Stage IVB grade 3 in one month. We were as devastated as you and your sister. Surgery was last June, chemo started at end of July (carbo/taxol. This was well tolerated and because of a leveling off of CA125 we went through 11 treatments. As of today, while the physical exams are normal and her GYN/ONCS characterizes her as stable, the carbo/taxol has stopped working, the CA125 is rising, and there are bone metastases. Pending any other options that we can find, hormone therapy is next.

We also are looking for any experience of others, help, or ideas we can get to try to get us to a stable state. It is unfortunately a difficult journey where sometimes the experiences of people like on this board can be sometimes as helpful, if not more so, than two good GYN/ONCS.

I keep telling my wife that somebody has to be in the positive percentage and that we are going to do everything to get her there.

concernedspouse
Hi Concernedspouse,

Thanks for so much for sharing your story with us. My sister's situation is quite similar to your wife's so you could tell how devastated we are now. She was on Megace for 9 months and finally had her surgery to remove our uterus about 8 weeks ago (in 2/18/2012). She was told Stage1A, Grade 3 after the surgery and no further treatment is needed but monitoring. However, she started feeling a severe pelvic pain 2 weeks ago and now she is announced stage 4B as multiple nodules can be seen in her pelvic/lung and a small lump in her liver. She just had her first Chemo done yesterday but her severe pelvic pain still kicks her so we have to stay in the hospital. Did your wife experience any pain in the past and do you know if this will go away when the Chemo does its work and kill/shrink the cancer cells?

Again, my sister oncologist keeps saying my sister is one of the rare cases and he hardly sees cancer spreads this crazy fast after the surgery. We will be seeking a 2nd opinion from Johns Hopkins and hope to see if there is any better treatment for her. I will keep you posted on what we hear from the 2nd opinion. High dose megace was the hormone therapy my sister was on before her surgery but it showed her cancer had no response to it.

paris11

crystalblue1208 said:

paris11

Hi Connie,

Had you experienced any severe pain in the past? My sister is a strong woman and she is willing to fight and become many fine ones out there as you. However, the severe pelvic pain really bothers her and I am so afraid this will never go away.

Crystalblue
No pain - but I practice yoga - meditate - have accupuncture (now that I think of it , I had accupuncture during all 18 IP treatments). I swear by reiki. Hope the pain subsides.

Connie

paris11

crystalblue1208 said:

concernedspouse
Hi Concernedspouse,

Thanks for so much for sharing your story with us. My sister's situation is quite similar to your wife's so you could tell how devastated we are now. She was on Megace for 9 months and finally had her surgery to remove our uterus about 8 weeks ago (in 2/18/2012). She was told Stage1A, Grade 3 after the surgery and no further treatment is needed but monitoring. However, she started feeling a severe pelvic pain 2 weeks ago and now she is announced stage 4B as multiple nodules can be seen in her pelvic/lung and a small lump in her liver. She just had her first Chemo done yesterday but her severe pelvic pain still kicks her so we have to stay in the hospital. Did your wife experience any pain in the past and do you know if this will go away when the Chemo does its work and kill/shrink the cancer cells?

Again, my sister oncologist keeps saying my sister is one of the rare cases and he hardly sees cancer spreads this crazy fast after the surgery. We will be seeking a 2nd opinion from Johns Hopkins and hope to see if there is any better treatment for her. I will keep you posted on what we hear from the 2nd opinion. High dose megace was the hormone therapy my sister was on before her surgery but it showed her cancer had no response to it.

Crystalblue
Johns Hopkins is an outstanding medical facility. Is Dr. Armstrong still there. She was the Principal for the IP Clinical Trial.

I have always thought that I had more cancer present in Jan. 2007 and that the onc missed it.

One doc said "they didn't get all of it".

Connie

Kaleena

crystalblue1208 said:

paris11

Hi Connie,

Had you experienced any severe pain in the past? My sister is a strong woman and she is willing to fight and become many fine ones out there as you. However, the severe pelvic pain really bothers her and I am so afraid this will never go away.

Has your sister had any
Has your sister had any surgeries yet? Hysterectomy?

concernedspouse

crystalblue1208 said:

concernedspouse
Hi Concernedspouse,

Thanks for so much for sharing your story with us. My sister's situation is quite similar to your wife's so you could tell how devastated we are now. She was on Megace for 9 months and finally had her surgery to remove our uterus about 8 weeks ago (in 2/18/2012). She was told Stage1A, Grade 3 after the surgery and no further treatment is needed but monitoring. However, she started feeling a severe pelvic pain 2 weeks ago and now she is announced stage 4B as multiple nodules can be seen in her pelvic/lung and a small lump in her liver. She just had her first Chemo done yesterday but her severe pelvic pain still kicks her so we have to stay in the hospital. Did your wife experience any pain in the past and do you know if this will go away when the Chemo does its work and kill/shrink the cancer cells?

Again, my sister oncologist keeps saying my sister is one of the rare cases and he hardly sees cancer spreads this crazy fast after the surgery. We will be seeking a 2nd opinion from Johns Hopkins and hope to see if there is any better treatment for her. I will keep you posted on what we hear from the 2nd opinion. High dose megace was the hormone therapy my sister was on before her surgery but it showed her cancer had no response to it.

Stage IVB Grade 3
Hi Crystalblue:

Your sisters situation is absolutely identical to my wife's. Metastases to lungs, liver, pelvis. The only difference is that we were very fortunate in not having any pain at all to-date. The carbo/taxol treatments did knock back the tumors seen during surgery to the point that other than the lung nodules, the most recent CT scan saw nothing (at least at a detectable size). Also her exams have been "normal" in the sense that palpitations do not feel anything unusual. However, the PET scan did show metastases to multiple spots (pelvic bone, sacrum, and lower vertebrae)although they were not visible on the CT scan.

Unfortunately it appears that the carbo/taxol treatments are no longer effective because of a rising CA125 and the bone metastases. Today we start megace/tamoxifin (hormone therapy). This is not a treatment that is effective enough to give much hope, so we need to try to find something that has a higher probability of being effective. Our main G/O says that a more aggressive treatment would kill her, but we don't know that the hormone therapy will do anything.

I am next going to see if MD Anderson might have any options. We are also looking at some clinical trial, but after sifting through 350 "recruiting" for uterine adenocarcinoma, there are really only a handful that she might qualify for, given what is available in relation to what her disease is like. They also primarily deal with avastin being added to carbo/taxol.

Please let's stay in touch because your sister's and my wife's cases seem so similar. Let me know if there is anything else you need to know. We are in the Chicago area and dealing with G/O's at teaching institutions. However, I believe that there must be something out there that is medically sound and hopefully more effective to our two unusual cases.

I wonder if Paris11 could tell us what was used in her second chemo treatment in 2010 ? Thank you.

crystalblue1208

Kaleena said:

Has your sister had any
Has your sister had any surgeries yet? Hysterectomy?

Kaleena
She had "partial" hysterectomy because she is still young so the doctor kept her ovaries (no cancer cell was seen out her uterus or detected in 6 lymph nodes they took out from her pelvic)

crystalblue1208

paris11 said:

Crystalblue
Johns Hopkins is an outstanding medical facility. Is Dr. Armstrong still there. She was the Principal for the IP Clinical Trial.

I have always thought that I had more cancer present in Jan. 2007 and that the onc missed it.

One doc said "they didn't get all of it".

Connie

paris11

Would you mind if I asked which facility/oncologist you were seeing? Dr. Deborah Armstrong is the doctor my sis's onc is going to refer to. Were you also being seen by Dr. Armstrong?

paris11

concernedspouse said:

Stage IVB Grade 3
Hi Crystalblue:

Your sisters situation is absolutely identical to my wife's. Metastases to lungs, liver, pelvis. The only difference is that we were very fortunate in not having any pain at all to-date. The carbo/taxol treatments did knock back the tumors seen during surgery to the point that other than the lung nodules, the most recent CT scan saw nothing (at least at a detectable size). Also her exams have been "normal" in the sense that palpitations do not feel anything unusual. However, the PET scan did show metastases to multiple spots (pelvic bone, sacrum, and lower vertebrae)although they were not visible on the CT scan.

Unfortunately it appears that the carbo/taxol treatments are no longer effective because of a rising CA125 and the bone metastases. Today we start megace/tamoxifin (hormone therapy). This is not a treatment that is effective enough to give much hope, so we need to try to find something that has a higher probability of being effective. Our main G/O says that a more aggressive treatment would kill her, but we don't know that the hormone therapy will do anything.

I am next going to see if MD Anderson might have any options. We are also looking at some clinical trial, but after sifting through 350 "recruiting" for uterine adenocarcinoma, there are really only a handful that she might qualify for, given what is available in relation to what her disease is like. They also primarily deal with avastin being added to carbo/taxol.

Please let's stay in touch because your sister's and my wife's cases seem so similar. Let me know if there is anything else you need to know. We are in the Chicago area and dealing with G/O's at teaching institutions. However, I believe that there must be something out there that is medically sound and hopefully more effective to our two unusual cases.

I wonder if Paris11 could tell us what was used in her second chemo treatment in 2010 ? Thank you.

Happy to answer all questions
Chyrstalblue,

I live in Chicago. Dr. Armstrong is not my onc but I have heard DR. Armstrong speak. She is highly intelligent, totally dedicated, and a fun, charming woman. I am certain that you will connect with her and that she will have sound recommendations.

I am being cared for at Prentice Hospital in Chicago . Julian Schink MD is the onc.

Concerned Spouse,

Recurrence in 2007: 6 tx carbo/taxol.

Recurrence in 2010: 18 consecutive (weekly) tx IP carbo/taxol.

Evanston NorthShore is offering an all day seminar on gyn. cancers on Saturday, April 21. If you are going to attend, let's lunch together.
After 5 plus years with Stage IV, I have learned much about cancer. I know the docs in Chicago.

Connie

crystalblue1208

concernedspouse said:

Stage IVB Grade 3
Hi Crystalblue:

Your sisters situation is absolutely identical to my wife's. Metastases to lungs, liver, pelvis. The only difference is that we were very fortunate in not having any pain at all to-date. The carbo/taxol treatments did knock back the tumors seen during surgery to the point that other than the lung nodules, the most recent CT scan saw nothing (at least at a detectable size). Also her exams have been "normal" in the sense that palpitations do not feel anything unusual. However, the PET scan did show metastases to multiple spots (pelvic bone, sacrum, and lower vertebrae)although they were not visible on the CT scan.

Unfortunately it appears that the carbo/taxol treatments are no longer effective because of a rising CA125 and the bone metastases. Today we start megace/tamoxifin (hormone therapy). This is not a treatment that is effective enough to give much hope, so we need to try to find something that has a higher probability of being effective. Our main G/O says that a more aggressive treatment would kill her, but we don't know that the hormone therapy will do anything.

I am next going to see if MD Anderson might have any options. We are also looking at some clinical trial, but after sifting through 350 "recruiting" for uterine adenocarcinoma, there are really only a handful that she might qualify for, given what is available in relation to what her disease is like. They also primarily deal with avastin being added to carbo/taxol.

Please let's stay in touch because your sister's and my wife's cases seem so similar. Let me know if there is anything else you need to know. We are in the Chicago area and dealing with G/O's at teaching institutions. However, I believe that there must be something out there that is medically sound and hopefully more effective to our two unusual cases.

I wonder if Paris11 could tell us what was used in her second chemo treatment in 2010 ? Thank you.

concernedspouse
We will keep your wife and your family in our prayer and I will update you on how my sister is doing and please do the same. It's so nice to hear people who had experienced similar/same situation so we don't feel alone.

Kaleena

crystalblue1208 said:

Kaleena
She had "partial" hysterectomy because she is still young so the doctor kept her ovaries (no cancer cell was seen out her uterus or detected in 6 lymph nodes they took out from her pelvic)

I was 44 years old and
I was 44 years old and started to have the pain. For a whole year I sought out help. Had a colonoscopy (it was good) and finally saw my gyne. He informed me then that I had endometriosis (just the disease - not cancer). Went in for a laparascopy - After that indicated that I had severe endometriosis and needed a hysterectomy. By this time my pains were so bad that I could tell when they were going to start. I have a high tolerance to pain, and do not take any type of medication, but I was soon taking 2 motrins every morning and evening to stave off the pain. If I didn't, I would end up curled up in almost a fetal position because the pain was so bad and I had to wait until the pain medication set in if I hadnt taken it. I described it like it would be like twisting a towel - taking your insides and twisting it like that. I almost passed out a couple of times. So it was determined that I would need a total hysterectomy but they wanted me to wait 6 months because they wanted me to take Lupron which would stop the endometriosis and soften the adhesions. Taking the Lupron did stop the severe pain, but I was still taking motrin. I ended up waiting 7 months - had a complete hysterectomy - went back for the checkup only to be told I had endometrial adenocardinoma. Went back in for staging surgery 4 weeks later - diagnosed Grade 2, Stage iiia Endometrial Adenocarcinoma. (found in both the uterus and left ovary - which was NOT detected in the laparascopy or the internal sonogram I previously had) (That was in October of 2005) Took chemo - 3 brachytherapies.

What was removed: uterus, ovaries, tubes, (original surgery) appendix, omentem, lymph nodes, etc. (staging surgery)

Good thing. No more pain. No pain medications. Started to have a little pain in 2009(like a hemmeroid - but it was near the spot from before). Had a positive biopsy. Had surgery to remove mass and lymphy nodes in February 2010 - found no cancer, except one lymph node removed which had microscopic cells. No treatment required.

On general check-ups and scans since then.

Wishing the best for your sister.

Kathy

concernedspouse

paris11 said:

Happy to answer all questions
Chyrstalblue,

I live in Chicago. Dr. Armstrong is not my onc but I have heard DR. Armstrong speak. She is highly intelligent, totally dedicated, and a fun, charming woman. I am certain that you will connect with her and that she will have sound recommendations.

I am being cared for at Prentice Hospital in Chicago . Julian Schink MD is the onc.

Concerned Spouse,

Recurrence in 2007: 6 tx carbo/taxol.

Recurrence in 2010: 18 consecutive (weekly) tx IP carbo/taxol.

Evanston NorthShore is offering an all day seminar on gyn. cancers on Saturday, April 21. If you are going to attend, let's lunch together.
After 5 plus years with Stage IV, I have learned much about cancer. I know the docs in Chicago.

Connie

Stage IVB Grade 3
Hello Paris 11:

We are at the same place-Prentice. We may have even been there at the same time and not known it. We would love to do lunch and share experiences. I don't know how we exchange info ? If you could tell me how, we very much want to do lunch. Thank you.

paris11

concernedspouse said:

Stage IVB Grade 3
Hello Paris 11:

We are at the same place-Prentice. We may have even been there at the same time and not known it. We would love to do lunch and share experiences. I don't know how we exchange info ? If you could tell me how, we very much want to do lunch. Thank you.

This is totally COOL!
Hi Concernedspouse,

I am in Florida now but I have an appointment at Lurie on May 15 and on May 17.

Are you planning on attending the EvanstonNorthShore Seminar on April 21?

Is Julian C. Schink, MD your physician?

Do you know William Small, Jr., MD.? He is SuperSmart and a SuperNice Guy.

I would love to meet you in May. I live about 15 minutes from Lurie.

Connie

312-208-2484 Cell - I have it with me in Florida.