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

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? 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

paris11 said:

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? 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.

Connie
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

Ryans hope

One day at a time
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

Ryans hope said:

One day at a time
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.

Ryans hope
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

Kaleena said:

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

Kaleena

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

Kaleena said:

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

Kaleena

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

Kaleena said:

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

Kaleena

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

txtrisha55 said:

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

Hi Trish,My sister's name
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.

concernedspouse

Ryans hope said:

One day at a time
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.

Types of Treatments/ Experience
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

Ryans hope said:

One day at a time
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.

Ryans Hope
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.

Be Not Afraid

Stage 3C Grade 2-Age 30/31
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

Be Not Afraid said:

Stage 3C Grade 2-Age 30/31
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!!

Thank you, Be Not Afraid

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

crystalblue1208 said:

Thank you, Be Not Afraid

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!)

Good to hear
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

Be Not Afraid said:

Good to hear
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!

Bless you, Be Not Afraid!
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!

Peggy Davis

To Crystalblue1208~~~
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.

debrajo

Peggy Davis said:

To Crystalblue1208~~~
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.

Hi! I also have UPSC
Hi! I also have UPSC 1A-grade3. I was 57 at diagnoses and had six rounds of taxol and carboplatin and five internal radiation after a complete hysterectomy. No lymph nodes taken, but everything else was negative including pelvic wash. Have not had any symptoms you talk about, but did loose all my hair(no big deal) and the severe hip,leg, and ankle pain from day three to day six. No loss of appetite, actually gained 30 pounds. I have been NED(NO EVIDENCE of DIEASE) as of May 21, 2012 for two years! There are a lot of us living quite well for long periods of time and then starting over again. As Jazzy1 says cancer is a word, not a sentence! Best, Debrajo

crystalblue1208

Peggy Davis said:

To Crystalblue1208~~~
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.

Peggy Davis
Hi Peggy Davis,

My sister had her 2nd chemo last week. Her hair started to fall 2 weeks after the 1st chemo and she has expereinced almost every side effect that could possibly happen. The good thing is usually the symptoms will be relieved 10 days after each chemo session so she could have a least an "easy" week to get herself ready before her next chemo session.

RoseyR

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.

A Suggestion

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

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.

A Suggestion

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

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.

A Suggestion

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