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

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

crystalblue1208

concernedspouse said:

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.

concernedspouse
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?

pakb56

THoughts and Prayers to your sister.
I was diagnosed with endometrial cancer with involvement in one falopian tube and one lymph node in December. Overcoming the WTF shock took me a couple of weeks. I soon found that people tell you you are in my thoughts in prayers was a life saver to me, pulling me out of some dark places in my mind. I believe so much in that power. After being involved in a car accident about 2 weeks ago, a ct scan showed I had 2 brain tumors. My healthcare team was so fabulous and I thank the Lord repeatedly for putting me in their capable hands. The tumors were removed about 10 days ago and I really feel great and started back to work yesterday.

This road we travel is a difficult one but must be traveled. I have to believe the Lord has a plan for me and whatever that may be I try to focus on the good and keep the bad at bay. I know, easier said than done and I amaze myself somedays I can do it!

The support you will receive on this board is awesome. These women have become the sisters of my heart and with them, I will never walk alone. I read a post a while back that said...I have cancer....cancer DOES NOT HAVE ME!

Take care and give your sister my best wishes.

Pat

crystalblue1208

pakb56 said:

THoughts and Prayers to your sister.
I was diagnosed with endometrial cancer with involvement in one falopian tube and one lymph node in December. Overcoming the WTF shock took me a couple of weeks. I soon found that people tell you you are in my thoughts in prayers was a life saver to me, pulling me out of some dark places in my mind. I believe so much in that power. After being involved in a car accident about 2 weeks ago, a ct scan showed I had 2 brain tumors. My healthcare team was so fabulous and I thank the Lord repeatedly for putting me in their capable hands. The tumors were removed about 10 days ago and I really feel great and started back to work yesterday.

This road we travel is a difficult one but must be traveled. I have to believe the Lord has a plan for me and whatever that may be I try to focus on the good and keep the bad at bay. I know, easier said than done and I amaze myself somedays I can do it!

The support you will receive on this board is awesome. These women have become the sisters of my heart and with them, I will never walk alone. I read a post a while back that said...I have cancer....cancer DOES NOT HAVE ME!

Take care and give your sister my best wishes.

Pat

Thanks, Pat!
Hi Pat,

Thanks for sharing your story with us. My sister has been on this crazy roller coaster both physically and emotionally ever since she learned her condition has changed from stage 1A to 4B. Her 3rd Chemo was cancelled yesterday because she had MRSA in her bloodstream. They had to remove her port and put the piccline back in and then make her on antibiotics for 2 more weeks......We are very discouraged when seeing those additional complications she is suffering on top of the evil disease. Your story/prayer really give us strength to move on.

concernedspouse

crystalblue1208 said:

concernedspouse
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?

Stage IV Grade 3 Crystalblue 1208
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

concernedspouse said:

Stage IV Grade 3 Crystalblue 1208
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.

my mum has similar circumstances
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

concernedspouse said:

Stage IV Grade 3 Crystalblue 1208
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.

my mum has similar circumstances
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.

Fayard

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!!

Hello Be Not Afraid
I was wondering how was chemo and how is radiation.
Are you doing well?

crystalblue1208

concernedspouse said:

Stage IV Grade 3 Crystalblue 1208
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.

Hello again, Concernedspouse!
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?

crystalblue1208

ihavethebestmum said:

my mum has similar circumstances
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 TOO
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.

Ro10

crystalblue1208 said:

Thanks, Pat!
Hi Pat,

Thanks for sharing your story with us. My sister has been on this crazy roller coaster both physically and emotionally ever since she learned her condition has changed from stage 1A to 4B. Her 3rd Chemo was cancelled yesterday because she had MRSA in her bloodstream. They had to remove her port and put the piccline back in and then make her on antibiotics for 2 more weeks......We are very discouraged when seeing those additional complications she is suffering on top of the evil disease. Your story/prayer really give us strength to move on.

Crystal blue I am sorry for your sister
Dealing with cancer treatments is difficult enough, but having MRSA is even tougher. I hope she gets the infection cleared up soon. I hope you both are able to take it one day at a time. You both remain in my prayers. In peace and caring.

jserbe0805

crystalblue1208 said:

Thanks, Pat!
Hi Pat,

Thanks for sharing your story with us. My sister has been on this crazy roller coaster both physically and emotionally ever since she learned her condition has changed from stage 1A to 4B. Her 3rd Chemo was cancelled yesterday because she had MRSA in her bloodstream. They had to remove her port and put the piccline back in and then make her on antibiotics for 2 more weeks......We are very discouraged when seeing those additional complications she is suffering on top of the evil disease. Your story/prayer really give us strength to move on.

crystalblue, I am new to
crystalblue, I am new to this site and I am so sorry to hear about your sister. I am here for my sister also...she was diagnosed in April also with stage 4 clear cell uterine cancer with mets to liver and lungs. I had asked about surgery on another post but has your sister had surgery? I read a lot about surgery being the first line of attack but my sister has not had surgery. The carboplatin/taxotere has not stopped the advance of the tumors so they are putting her on Alimta, which starts on Tues. I know MRSA can be tricky to deal with. Mom was in a nursing home and ended up with MRSA and seems like it took forever for it to be cleared up. :-( Hopefully your sister can rebound from it quickly and get back to her treatments.

crystalblue1208

jserbe0805 said:

crystalblue, I am new to
crystalblue, I am new to this site and I am so sorry to hear about your sister. I am here for my sister also...she was diagnosed in April also with stage 4 clear cell uterine cancer with mets to liver and lungs. I had asked about surgery on another post but has your sister had surgery? I read a lot about surgery being the first line of attack but my sister has not had surgery. The carboplatin/taxotere has not stopped the advance of the tumors so they are putting her on Alimta, which starts on Tues. I know MRSA can be tricky to deal with. Mom was in a nursing home and ended up with MRSA and seems like it took forever for it to be cleared up. :-( Hopefully your sister can rebound from it quickly and get back to her treatments.

jserbe0805
My sister did have a surgery to remove her uterus in February this year. It was staged 1A Grade 3 but then 7 weeks later the surgery it mets to liver and lungs. Doctor said at the point Chemo is the 1st line treatment. The carboplatin/taxotere did not stop the advance of the tumors for my sister either so she has switched to adriamycin/cisplatin/taxol. I hope you sister will get good response with Alimta. May I know which state you and your sister live and which clinic your sister receives her treatment at?
We're in DC.

jserbe0805

crystalblue1208 said:

jserbe0805
My sister did have a surgery to remove her uterus in February this year. It was staged 1A Grade 3 but then 7 weeks later the surgery it mets to liver and lungs. Doctor said at the point Chemo is the 1st line treatment. The carboplatin/taxotere did not stop the advance of the tumors for my sister either so she has switched to adriamycin/cisplatin/taxol. I hope you sister will get good response with Alimta. May I know which state you and your sister live and which clinic your sister receives her treatment at?
We're in DC.

My sister lives in the
My sister lives in the Frederickburg area. She had been referred to a gyno oncologist who said 3-4 rounds of chemo then surgery, but the med oncologist wants to continue with chemo. We were just all so surprised that it was so advanced at time of diagnosis. Seeing all the women here who have survived many years into treatment is so encouraging!

concernedspouse

crystalblue1208 said:

Hello again, Concernedspouse!
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?

Hi Crystalblue and I havethebestmum
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.

Ange1

jserbe0805 said:

My sister lives in the
My sister lives in the Frederickburg area. She had been referred to a gyno oncologist who said 3-4 rounds of chemo then surgery, but the med oncologist wants to continue with chemo. We were just all so surprised that it was so advanced at time of diagnosis. Seeing all the women here who have survived many years into treatment is so encouraging!

My Mom (60 yrs of age) was
My Mom (60 yrs of age) was just diagnosed November 23, 2012 (the day after Thanksgiving) that she has Grade 3 Edometrial adenocarcinoma. She had a sonogram and biopsy that confirmed this diagnosis with a normal pap smear. I just found a doctor and I hope I picked the right person. Her first appointment with an oncologist is Thursday, December 6th. It's the hardest thing to go through since we just buried my Dad two years ago due to a stroke. We cared for him for year at home as he suffered every day, thanking me for taking care of him and now hearing my Mom's news is breaking my heart. I joined this forum for support. Don't know what to expect from this evil illness. If anyone has any information to share to let me know what I should do to hurry up the process of surgery or whatever treatment she might need. Is there any additional testing that the oncologist would make her have before treatment begins?

I thank you all for sharing your stories and I pray that each one of your loved ones get better. May God Bless You All!

debrajo

Ange1 said:

My Mom (60 yrs of age) was
My Mom (60 yrs of age) was just diagnosed November 23, 2012 (the day after Thanksgiving) that she has Grade 3 Edometrial adenocarcinoma. She had a sonogram and biopsy that confirmed this diagnosis with a normal pap smear. I just found a doctor and I hope I picked the right person. Her first appointment with an oncologist is Thursday, December 6th. It's the hardest thing to go through since we just buried my Dad two years ago due to a stroke. We cared for him for year at home as he suffered every day, thanking me for taking care of him and now hearing my Mom's news is breaking my heart. I joined this forum for support. Don't know what to expect from this evil illness. If anyone has any information to share to let me know what I should do to hurry up the process of surgery or whatever treatment she might need. Is there any additional testing that the oncologist would make her have before treatment begins?

I thank you all for sharing your stories and I pray that each one of your loved ones get better. May God Bless You All!

Sorry for you and your mom.
Sorry for you and your mom. About the only suggestion I would make at this point is her dr. should be a gyn/onc and not just a onc. Dr.s do make a difference. If she is in pretty good health otherwise she should do fine on the chemo and radiation. Try to stay calm, some of the smarter ladies will be by soon to help you with things to do for this particular cancer. Best, debrajo

daisy366

debrajo said:

Sorry for you and your mom.
Sorry for you and your mom. About the only suggestion I would make at this point is her dr. should be a gyn/onc and not just a onc. Dr.s do make a difference. If she is in pretty good health otherwise she should do fine on the chemo and radiation. Try to stay calm, some of the smarter ladies will be by soon to help you with things to do for this particular cancer. Best, debrajo

Anje
I suggest that you get tissue assay (functional profile) of biopsied tissue. Some docs do this routinely, others don't. Check with your onc. This will help with treatment decisions along the way.

Hang in there and take it one day at a time.

Hugs, Mary Ann

crystalblue1208

Ange1 said:

My Mom (60 yrs of age) was
My Mom (60 yrs of age) was just diagnosed November 23, 2012 (the day after Thanksgiving) that she has Grade 3 Edometrial adenocarcinoma. She had a sonogram and biopsy that confirmed this diagnosis with a normal pap smear. I just found a doctor and I hope I picked the right person. Her first appointment with an oncologist is Thursday, December 6th. It's the hardest thing to go through since we just buried my Dad two years ago due to a stroke. We cared for him for year at home as he suffered every day, thanking me for taking care of him and now hearing my Mom's news is breaking my heart. I joined this forum for support. Don't know what to expect from this evil illness. If anyone has any information to share to let me know what I should do to hurry up the process of surgery or whatever treatment she might need. Is there any additional testing that the oncologist would make her have before treatment begins?

I thank you all for sharing your stories and I pray that each one of your loved ones get better. May God Bless You All!

Hello Ange1

I am sorry we had to meet under this circumstance but I am glad you've found this wonderful site. I actually learned a lot from reading many threads other ladies have posted and wished I (or my sister) could find this place earlier.

I don't have any to suggest in your mother's case as my sister found her cancer at a fairly young age and chose not to have the surgery right away but I am sure other ladies will provide you their inputs/ideas. Good luck!