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

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

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's picture
txtrisha55
Posts: 432
Joined: Apr 2011

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's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Thanks for posting and making us feel not alone.

txtrisha55's picture
txtrisha55
Posts: 432
Joined: Apr 2011

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

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Hi Trish,

My sister's name is Amy. We both live in DC. Thanks for keeping her in your prayer and we will also be praying for you.

shellybird
Posts: 2
Joined: Aug 2014

InnocentI was diagnosed with stage 3 endomedrium cancer this past March. Had a complete hysterectomy, the muscle outside the uterus removed (which the cancer was found attached to )and 35 lymph nodes removed. 2 weks later developed a severe absess that put me back into surgery. Now am receiving treatments. Have found through my journey that the hardest part is the unknown. I have been told I will not be cancer free for 5 years. Have days when my legs burn from the nerves trying to function without the lymph nodes. I take it day by day and my faith is very strong. My favorite saying of which I may have a tatoo done is God lead me to it and then he lead me through it.

debrajo's picture
debrajo
Posts: 796
Joined: Sep 2011

Welcome on board Shellybird, to the club no one wants to be in!  God does a good job leading us all and he has a lot of help from all the ladies here.  Hope better days are ahead for you.  It takes time...lots of it just to try to ajust to a new way of life!  Let us know how you are doing!  Best Debrajo

concernedspouse
Posts: 7
Joined: Apr 2012

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
Posts: 132
Joined: Oct 2010

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

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

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

paris11
Posts: 132
Joined: Oct 2010

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's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

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.

paris11
Posts: 132
Joined: Oct 2010

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

Kaleena's picture
Kaleena
Posts: 1227
Joined: Nov 2009

Has your sister had any surgeries yet? Hysterectomy?

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

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)

Kaleena's picture
Kaleena
Posts: 1227
Joined: Nov 2009

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

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Thank you so much for sharing your story here with us. The statistics really drag my sister down but every story here is a strong encouragement to her. Thanks again!

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Thank you so much for sharing your story here with us. The statistics really drag my sister down but every story here is a strong encouragement to her. Thanks again!

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Thank you so much for sharing your story here with us. The statistics really drag my sister down but every story here is a strong encouragement to her. Thanks again!

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

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
Posts: 132
Joined: Oct 2010

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

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

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?

concernedspouse
Posts: 7
Joined: Apr 2012

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's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

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.

paris11
Posts: 132
Joined: Oct 2010

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

concernedspouse
Posts: 7
Joined: Apr 2012

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
Posts: 132
Joined: Oct 2010

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.

paris11
Posts: 132
Joined: Oct 2010

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? I must clarify - Dr. Schink was NOT the surgeon for my original DX in Jan. 2007.

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.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi Connie,

I live is SW Florida. If you are anywhere near here I'd love to connect with you before your return to Chicago.

Mary Ann
m.elder@yahoo.com

RoseyR
Posts: 464
Joined: Feb 2011

I wish I knew what "type" of tumor your wife initially had based on the pathology report.

Whatever it is, given the spread, I'd seriously consider finding a good integrative doctor in your region who would prescribe LDN for her (low-dose naltrexone), which is very inexpensive and has no serious side effects. It has been shown in studies at Penn State to be effective in controlling (not necessarily "curing") several kinds of cancer, at slowing its spread.

Do NOT confuse it with regular Naltrexone (used to treat addictive disorders). LDN is best a a dosage of 4.00 or 4.5 miligrams (one pill before bedtime) and started at an even lower dosage of 1.5 to 2.0 mgs a night. (Vivid dreams and temporary trouble sleeping--until the system gets used to it--have been the main side effects experienced by some who take it. Hardly serious.

You have nothing to lose and everything to gain by trying LDN.

The reason it is not more widely prescribed and known is that it is very inexpensive (so no pharmaceuticals have anything to gain by running clinical trials of it) and its use for cancer patients (in trials at Penn State and elsewhere) have only been recent.

You should Google LDN; there is a web site that will explain HOW it works, if you are interested.

I'd also get your wife on at least 3,000 mgs of curcumin a day. (1,000 mgs after each meal.) And two teaspoons of fish oil a day. And vitamin D drops (3-5 drops a day, or equivalent of 6,000 to 10,000 mgs of D a day; this is not excessive) until her blood level tests between 60 - 75. Most cancer patients are really deficient in this vitamin.

Best,
Rosey

D

RoseyR
Posts: 464
Joined: Feb 2011

I wish I knew what "type" of tumor your wife initially had based on the pathology report.

Whatever it is, given the spread, I'd seriously consider finding a good integrative doctor in your region who would prescribe LDN for her (low-dose naltrexone), which is very inexpensive and has no serious side effects. It has been shown in studies at Penn State to be effective in controlling (not necessarily "curing") several kinds of cancer, at slowing its spread.

Do NOT confuse it with regular Naltrexone (used to treat addictive disorders). LDN is best a a dosage of 4.00 or 4.5 miligrams (one pill before bedtime) and started at an even lower dosage of 1.5 to 2.0 mgs a night. (Vivid dreams and temporary trouble sleeping--until the system gets used to it--have been the main side effects experienced by some who take it. Hardly serious.

You have nothing to lose and everything to gain by trying LDN.

The reason it is not more widely prescribed and known is that it is very inexpensive (so no pharmaceuticals have anything to gain by running clinical trials of it) and its use for cancer patients (in trials at Penn State and elsewhere) have only been recent.

You should Google LDN; there is a web site that will explain HOW it works, if you are interested.

I'd also get your wife on at least 3,000 mgs of curcumin a day. (1,000 mgs after each meal.) And two teaspoons of fish oil a day. And vitamin D drops (3-5 drops a day, or equivalent of 6,000 to 10,000 mgs of D a day; this is not excessive) until her blood level tests between 60 - 75. Most cancer patients are really deficient in this vitamin.

Best,
Rosey

D

RoseyR
Posts: 464
Joined: Feb 2011

I wish I knew what "type" of tumor your wife initially had based on the pathology report.

Whatever it is, given the spread, I'd seriously consider finding a good integrative doctor in your region who would prescribe LDN for her (low-dose naltrexone), which is very inexpensive and has no serious side effects. It has been shown in studies at Penn State to be effective in controlling (not necessarily "curing") several kinds of cancer, at slowing its spread.

Do NOT confuse it with regular Naltrexone (used to treat addictive disorders). LDN is best a a dosage of 4.00 or 4.5 miligrams (one pill before bedtime) and started at an even lower dosage of 1.5 to 2.0 mgs a night. (Vivid dreams and temporary trouble sleeping--until the system gets used to it--have been the main side effects experienced by some who take it. Hardly serious.

You have nothing to lose and everything to gain by trying LDN.

The reason it is not more widely prescribed and known is that it is very inexpensive (so no pharmaceuticals have anything to gain by running clinical trials of it) and its use for cancer patients (in trials at Penn State and elsewhere) have only been recent.

You should Google LDN; there is a web site that will explain HOW it works, if you are interested.

I'd also get your wife on at least 3,000 mgs of curcumin a day. (1,000 mgs after each meal.) And two teaspoons of fish oil a day. And vitamin D drops (3-5 drops a day, or equivalent of 6,000 to 10,000 mgs of D a day; this is not excessive) until her blood level tests between 60 - 75. Most cancer patients are really deficient in this vitamin.

Best,
Rosey

D

RoseyR
Posts: 464
Joined: Feb 2011

I wish I knew what "type" of tumor your wife initially had based on the pathology report.

Whatever it is, given the spread, I'd seriously consider finding a good integrative doctor in your region who would prescribe LDN for her (low-dose naltrexone), which is very inexpensive and has no serious side effects. It has been shown in studies at Penn State to be effective in controlling (not necessarily "curing") several kinds of cancer, at slowing its spread.

Do NOT confuse it with regular Naltrexone (used to treat addictive disorders). LDN is best a a dosage of 4.00 or 4.5 miligrams (one pill before bedtime) and started at an even lower dosage of 1.5 to 2.0 mgs a night. (Vivid dreams and temporary trouble sleeping--until the system gets used to it--have been the main side effects experienced by some who take it. Hardly serious.

You have nothing to lose and everything to gain by trying LDN.

The reason it is not more widely prescribed and known is that it is very inexpensive (so no pharmaceuticals have anything to gain by running clinical trials of it) and its use for cancer patients (in trials at Penn State and elsewhere) have only been recent.

You should Google LDN; there is a web site that will explain HOW it works, if you are interested.

I'd also get your wife on at least 3,000 mgs of curcumin a day. (1,000 mgs after each meal.) And two teaspoons of fish oil a day. And vitamin D drops (3-5 drops a day, or equivalent of 6,000 to 10,000 mgs of D a day; this is not excessive) until her blood level tests between 60 - 75. Most cancer patients are really deficient in this vitamin.

Best,
Rosey

D

RoseyR
Posts: 464
Joined: Feb 2011

I wish I knew what "type" of tumor your wife initially had based on the pathology report.

Whatever it is, given the spread, I'd seriously consider finding a good integrative doctor in your region who would prescribe LDN for her (low-dose naltrexone), which is very inexpensive and has no serious side effects. It has been shown in studies at Penn State to be effective in controlling (not necessarily "curing") several kinds of cancer, at slowing its spread.

Do NOT confuse it with regular Naltrexone (used to treat addictive disorders). LDN is best a a dosage of 4.00 or 4.5 miligrams (one pill before bedtime) and started at an even lower dosage of 1.5 to 2.0 mgs a night. (Vivid dreams and temporary trouble sleeping--until the system gets used to it--have been the main side effects experienced by some who take it. Hardly serious.

You have nothing to lose and everything to gain by trying LDN.

The reason it is not more widely prescribed and known is that it is very inexpensive (so no pharmaceuticals have anything to gain by running clinical trials of it) and its use for cancer patients (in trials at Penn State and elsewhere) have only been recent.

You should Google LDN; there is a web site that will explain HOW it works, if you are interested.

I'd also get your wife on at least 3,000 mgs of curcumin a day. (1,000 mgs after each meal.) And two teaspoons of fish oil a day. And vitamin D drops (3-5 drops a day, or equivalent of 6,000 to 10,000 mgs of D a day; this is not excessive) until her blood level tests between 60 - 75. Most cancer patients are really deficient in this vitamin.

Best,
Rosey

D

Ryans hope
Posts: 2
Joined: Apr 2012

Dear CrystalBlue1208,
I just found this site and was uncertain about joining,but your posting of your sister's story motivated me. First and foremost you are an amazing sister. Your love and support are going to be invaluable to your sister during this difficult time.
I was diagnosed with Stage IVB Grade 3 UPSC in November 2007 after many months of frequent visits to my PCP complaining of symptoms which she ignored. I also had severe pain, but thankfully it subsided after surgery.
I have been in some type of treatment, either conventional or a clinical trial, for all but 3 of the 54 months since my diagnosis. I still have disease, but I have beaten the odds and I am living my life. I had a chemo treatment today! Also, I am much older than your sister.(54 at diagnosis).
Please tell your sister she can do this. She has strength deep in the core of her being, that will surprise and amaze her.
My advice is to find a good treatment team, educate yourself and take things one day at a time. Some days are good, some days are great and some days are hell. But please remember that on the hellish days....things will get better.
I wish you and your sister healing energy and comfort. You are in my prayers.
Please post an update on how she is doing.
Take good care.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Thank you for deciding to join and share your story. You give me inspiration and hope. May your journey be smooth...

Another UPSC sister, Mary Ann

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Thanks you so much for sharing your story with us and other UPSC sisters. May everyone's story here inspires my sister to beat the odds and someday soon she could come on this site herself to share her own story and become one of the heroes like you all.

concernedspouse
Posts: 7
Joined: Apr 2012

Dear Ryans Hope:

Thank you for joining. I will share your story with my wife as a source of inspiration to what is possible. As we are in the early part of our journey (diagnosed IVB June 30, 2011), 11 rounds of carbo/taxol that seem to have stopped working), we are looking for other options. Would you be kind enough to share some of your treatment experiences ? Thank you.

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Hi Concernedspouse,

Just want to let you know my sister had her 2nd opinion with Dr. Armstrong at Johns Hopkins last week. Dr. Armstrong would like to my sis continue her Chemo and she won't refer my sister to any other clinical trial unless Chemo show no effects or stops working. Have you been to MD Anderson yet? What's the recommendation or plan they suggest?

concernedspouse
Posts: 7
Joined: Apr 2012

Hi Crystalblue:

I am so sorry in being so late in replying to you. We have been so involved with my wife's care that I have been remiss in checking the board.

We went to MD Anderson in mid June. While this may not be a fair statement for an institution that has such a fine reputation, overall, our experience was disappointing. While we were seen by a very qualified gyn/onc, we really did not feel that there was a great deal of thought put into our case. The junior resident who did most of the intake seemed pretty junior. It seemed like we were put into a "Stage IVb-grade 3 Box" with no novel (although some surprising) thoughts or suggestions about possible treatment methodologies or clinical trials.

At the time we went to MD Anderson we had just re-started carbo/taxol (treatment number 12). It was suspended 2 months earlier because my wifes's CA 125 rose fro 50 to 98 and the carbo/taxol was pronounced as not working anymore. During the 2 month hiatus she was put on a megace oral regimen, but when she worsened clinically and her CA 125 climbed to 2,200 the gyn/onc wanted to try malphalon, which we did not feel comfortable with. After we looked at the pattern of her treatments in relation to changes in her CA 125 we asked to resume the carbo/taxol because we believed it was working, whereas the malphalon was an unknown.

After each new treatment the CA 125 has gone down (we are now at 398 and just had the 15th treatment). At the same time we are still taking the oral megace. Since the effectiveness of the megace takes a minimum of 2 to 3 months to see if it is doing any good, we really don't know if the turn in the CA 125 is due to the megace taking hold, the re-start of the the carbo/taxol, or a combination of the two.(The Ca 125 started coming down after the first re-start of treatment, but also at the two month anniversary on megace.) We hope that the megace is doing something because this is oral and if it is doing anything it could give my wife a break from the chemo.

I'm sorry to digress so far from our MD Anderson visit but I had to share with you the above to circle back to the visit. When we pressed for a recommendation on a direction, we were told to stop the carbo/taxol and start irinotecan sooner than later. As this was the unusual part of our visit (not familiar with irinotecan for uterine cancer, know it is used as a second or third line for colon cancer)we inquired about their thoughts about doxcil (which we were under the impression was no longer available in the US due to the contract manufacturer for Johnson & Johnson (I think) no longer willing to make itfor J&J. Much to our surprise, when we mentioned doxcil, the recommendation immediately changed from switching to irinotecan to switching to doxcil.

The major benefit of going to MDA was we learned that doxcil is now again indeed available in the US, imported from India (with special FDA approval) as lipodox.At this point we are glad we did not abandon the carbo/taxol. We hope that my wife can tolerate the current carbo/taxol/megace for another few treatments to get her CA 125 down lower, and then just stay on the megace to see if it can help control the cancer and give her a respite from the chemo, and keep the lipodox as a reserve that we hope we never need.

We wish your sister the best. Please let us know how she is doing or if there is anything else we can do to help. If you would like to talk at greater length, please let me know.

ihavethebestmum
Posts: 7
Joined: Jul 2012

Hello, this is my first time posting. My mum has similar circumstances. She was first thought to have 'standard' endometrial cancer, but after her surgery they said it had spread to lymph nodes and she would need chemo/radiation. Things quickly turned worse. A second biopsy showed she has poorly differentiated/high grade cancer cells in addition to the well-differentiated low grade cancer cells they orginally thought she had. Within a few weeks her CT scan (baseline before start of chemo) showed progression in the bones and liver.

After 3 rounds of carbol/taxol the CT scan showed her cancer was still progressing within her bones and another spot on her liver. Doctors seem as confused as anyone as this is not the 'normal' path for her cancer. We are now looking into second opinions/the next step.

Doctors presented a few second line chemos/clinical trials. Does anyone have any experience with Carbol/taxol failing?

Any insight would be helpful.

I'm 25 and we're sick with worry all the time. My mum is only 58 and we need her with us for many many more years.

ihavethebestmum
Posts: 7
Joined: Jul 2012

Hello, this is my first time posting. My mum has similar circumstances. She was first thought to have 'standard' endometrial cancer, but after her surgery they said it had spread to lymph nodes and she would need chemo/radiation. Things quickly turned worse. A second biopsy showed she has poorly differentiated/high grade cancer cells in addition to the well-differentiated low grade cancer cells they orginally thought she had. Within a few weeks her CT scan (baseline before start of chemo) showed progression in the bones and liver.

After 3 rounds of carbol/taxol the CT scan showed her cancer was still progressing within her bones and another spot on her liver. Doctors seem as confused as anyone as this is not the 'normal' path for her cancer. We are now looking into second opinions/the next step.

Doctors presented a few second line chemos/clinical trials. Does anyone have any experience with Carbol/taxol failing?

Any insight would be helpful.

I'm 25 and we're sick with worry all the time. My mum is only 58 and we need her with us for many many more years.

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Hello ihavethebestmum,

I am so sorry to hear your mom's story and my heart aches when reading your post. My mom also found her ovarian cancer when she was 58 years old. We were fortunate that her cancer was only contained inside her ovary and she has been in NED for almost 4 years after the surgery+6 round of Carbo/Taxol.

Because my mom's recovery was so successful and truly a blessing, I put my faith in God and never lose my hope even my sister's condition has turned a lot worse than we thought.

Never lose your hope!! I will keep you and your family in my prayer.

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Thanks for your update and I am sorry your experience with MD Anderson wasn't a good one. My sister was also referred to a well-known cancer center and her experience is almost indifferent compared to yours. (The junior resident did the most talk and check-up. The recommendation was not so promising and the poor statistic they provided made you feel so disappointed.)

My sister had MRSA after the 2nd Carbo/Taxotere Chemo. Her newly installed port was removed and the next Chemo treatment was delayed for weeks due to the infection. She then was back to hospital for pain management due to severe cancer pain but that was also when/how the doctor found she failed to response to Carbo/Taxotere and decided to switch her to adriamycin/cisplatin/taxol. She has been on the the new regiment twice and has brought a lot more side effects but the good news is it seems to work better to fight her cancer.

The latest complication we are facing is her blood count doesn't look good. She is waiting on her blood transfusion done and she won't be able to resume her Chemo treatment until all numbers are back to normal.

My sister will have another CT SCAN after two more Chemo. GDC-0980‏ is the clinical trail recommended to my sister. We were told this will be the next step to go if the new regiment doesn't seem to work. Have you heard about this clinical trail before?

concernedspouse
Posts: 7
Joined: Apr 2012

Crystalblue I am very sorry to hear about the infection and your experience with the well known cancer center. Unfortunately we are often put into a pigeon hole based on our stage and grade and read the statistics. However I keep telling my wife that the good side statistic, no matter how dismal, is never zero. There are always people in this column and we need to do everything we can to make sure we are on that side. If only the system would worry more about how to get us to the good side rather than throwing up its hands based on the diagnoses, perhaps the numbers on the good side would increase.

Luckily my wife does not have a port and after 14 carbo/taxol treatments we have been fortunate in avoiding this issue. I am not familiar with GDC-0980. Is it a Phase I or Phase II trial ? Generally Phase I deals with trying to get the right dosages of a drug while Phase II focuses more on testing the efficacy of the dosages determined in Phase I.

While I have looked at hundreds of Phase II trials, at the end of the day we would qualify for perhaps 3 because of my wife's not perfect kidney function. What are her doctor's thoughts on lipodox (doxil) ? This would be our fall-back position if the carbo/taxol "stops working".

Ihavethebestmum, we were told several months ago that after 11 treatments the carbo/taxol stopped working. We did not like the proposed alternative and were put on megace while we explored different options. After our CA125 started going through the roof I looked at the relationship between the dosage interval and the CA125 readings and the doctor agreed to put my wife back on carbo/taxol (we are scheduled for treatment #15 next week). Since on the oral megace and the carbo/taxol (again) the numbers have come down from 2,200 to about 400. We are keeping our fingers crossed on next week's blood work and hoping the the addition of the megace might be doing something. So, we are not quite sure if the carbo/taxol failed or not as supposedly it "seemed" to stop working, but after a two month stoppage and a runaway CA125 something now seems to be working.

Crystalblue and Ihavethebestmum, it seems like our cases and experiences are a lot alike. Please let me know if there is anything I can share with you. I will keep you posted of how things are going and wish you the best possible outcomes. I know what you are going through and have a pretty good ideal of what your sister and mum must be going through, based on my wife, who is the best wife in the world.

Be Not Afraid's picture
Be Not Afraid
Posts: 8
Joined: May 2012

Hello...

I am new to the site and have been reading posts. I was diagnosed in Aug. 2011 (age 30), first with a Granulosa Tumor on one ovary, which lead to the finding of Uterine cancer through a D&C biopsy while in surgery. Since I am young too, they wanted to preserve fertility. The doctors were hopeful that a hormone therapy drug of progesterone would make the uterus return to normalcy, but in Dec. 2011 they found that the uterine/Endometrial cancer was growing.

Therefore, I had a complete hysterectomy with 25 lymph nodes removed in Jan. 2012 (age 31). Uterine cancer had spread to a periaeortic lymph node which bumped my Stage up to 3C. I started chemo in February and radiation will follow in the summer. My chemo is Taxol/Carbo regimen. I've been taking it pretty well. I have 6 rounds of it. Actually, tomorrow, the 10th will be #5! The chemo does give me pelvic pains a few days after treatments. Fatigue has hit me, but walking really makes a difference in my mood and spirit. I encourage your sister to walk as much as she can. Also, bloating and back pain are my biggest complaints. I live in Iowa but travel to Mayo Clinic in MN.

Side Note: My cancer is linked to genetics. All stemming from a mutated gene that causes colon cancer, plus Endometrial/Ovarian cancer in women with the gene. My cancer shows that I'm positive for the mutated gene. I have been getting colonoscopies since my 20's and it will continue for a lifetime, yet it's my best preventative measure!

Also, I didn't have the courage or energy to reach out via websites or support groups and I am just now getting emotionally settled to find others. It takes time and everyone is different when that time comes. I have found it difficult to find anyone like me...young with reproductive cancer. This Network has opened my eyes to more young adults.

I will lift your sister up in prayer! Every one of us needs prayer soldiers to get us through!!

crystalblue1208's picture
crystalblue1208
Posts: 38
Joined: Apr 2012

Hi there,

Thank you so much for sharing your story. Every sister's posting here gives us so much strength and hope at this difficult moment.

We don't know if my sister also has lynch syndrome but her doctor highly suspects due to her age and our family history. My sister finally tried to walk more often after I told her about your story (in fact, today was the first time she actually walked outdoor for shopping after her 1st Chemo session) and she did feel a lot better after the long walk. I hope your 5th Chemo went well today and will keep you in my prayer. (By the way, I like your login name!)

Be Not Afraid's picture
Be Not Afraid
Posts: 8
Joined: May 2012

Hello...

Good to hear she had a good chemo session and energy to do some shopping. Usually chemo days are good feeling days since they hype you up on so many drugs! It's so good she has a supporter! Making little goals of doing physical exercise or a job around your home are little victories and will make her feel empowered little by little as she builds herself up for the next round of chemo. This what helps me anyway.

Lynch--Yes, I think your doctor is on the right track. This type of cancer shouldn't flare up in young women just on it's own. I didn't have genetic testing since I worry about the changing health care system and how insurance can discriminate. Even, though there are some laws in place right now, I am uneasy about the change of these laws in the future. I know I probably have a BIG X on my back anyway, but I didn't want myself permanently labeled. However, knowing can help determine if her kids would even have a 50-50 chance of carrying the gene; that is, if she has already had kids. I, myself, had not, so the genetic testing wouldn't help me in that matter since I won't be having biological children now.

What the doctor did do to help determine if I had a positive chance of carrying the Lynch gene is test my tumor with specific tests. See the link below:

Go to: http://www.mayoclinic.com/health/lynch-syndrome/DS00669/DSECTION=tests-and-diagnosis

I had tumor testing done. The results of the tumor testing showed that I am positive for carrying the Lynch gene. That's all I need to hear to confirm my wondering! I think the tumor testing is covered by insurance...but ask your doctor/insurance. However, genetic testing is expensive and I want to say it is an out-of-pocket expense. Maybe others can comment on that.

I wouldn't think it would be too late to get this test done even if surgical removal is complete. Ask your doc. I think mine has kept/froze? some of the tumor. I don't know the ins and outs about that, but ASK! It may not be too late to get tumor testing done.

All lot of info, I know. Hope it helps and provides some insight!

sunflash's picture
sunflash
Posts: 158
Joined: Aug 2011

Bless you, Be Not Afraid! You sound like you're dealing with this cancer business in a very positive way.
Isaiah 41:10 is one of my favorite Bible verses.........it's gotten me through many a fearful moment!
I have a very good family friend who is only 26 years old who came down with colon cancer. It was discovered that she is positive for lynch syndrome. There was no sign of any trouble at all before she came down with this cancer.
By the way, she was stage 3, but is doing just fine now. She'll be monitored carefully forever. That's the plus side of knowing you have this genetic link.

Sending big hugs and prayers!

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I was wondering how was chemo and how is radiation.
Are you doing well?

Peggy Davis
Posts: 7
Joined: May 2012

I have UPSC Stage 1A-Grade 3. I had a total hysterectomy. I am 56. I had 3
vaginal radiations, & on my 1st of 3 chemo's. My face & neck went red first, then
5 days of diarrhea, & neuropathy very severe & lots of pain. No hair loss, or change in
food tastes yet thank goodness! 800mg of Ibuprofen really helps. How does yours compare?
Anyone else with similar experiences out there? How long are sisters living with this?
What are the effects of chemo #2 & #3? Any info from anyone would be helpful please.

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