Recurrence After Only 7 Months
Comments
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Clinical Trialdeceptiveheart said:Diagnosed this week with Carcinosarcoma IB
Trying to stay positive is the hardest part when you find out you have a rare cancer.I did all the right things i hope.Had a pap smear,vaginal ultrasound & uterine biopsy.Found an excellent gyn/oncologist who did a total abdominal hysterectomy on Oct 18.In hospital 4 days with no pain & everything is healing nicely.Went to have my staples removed & found out I have a rare cancer.Suggested by my Dr., clinical trials with 6 treatments of chemo.I have an appointment to get the ball rolling on Tuesday November 8th.Not alot of current info on this kind of cancer & wondering if chemo is the way to go ? Any info will be appreciated.
There are actually 3 other drugs included in trial. From what I understand, it will be a randomized trial and participants will get 1 of the 3 drugs along with Taxel and Carbo. Study # is GOG-0086P0 -
I understand how you feelnoodles886 said:Clinical Trial
The clinical trial will be with Paclitaxel, and Carboplatin plus a third drug which has shown promise. I think I've heard women hear refer to the first 2 drugs as Taxel and Carbo, right? They seem to be the standard chemo. From all I've read about recurrent uterine cancer in an area considered distant like abdomen, cure is not usually possible. All that can be achieved is prolonging survival with treatment. Evidently my gyn-onc. doesn't think Taxel and Carbo would be enough and that's why he suggested the clinical trial. Maybe I'm overthinking things but it seems to make sense. I am SO depressed and sad plus angry -- this wasn't supposed to happen to me with Stage 1B cancer.
Just wanted you to know that I understand how you feel - I've been in a similar position. I've felt the sadness and anger too. I had my hysterectomy in 2001 when hyperplasia was found, but there was no actual cancer detected. I was told I was cured!
Then 7 years later (yes - 7 years!), a "recurrence" was found at the vaginal vault. Had 6.5 weeks of pelvic radiotherapy and was OK for 2.5 years and beginning to breathe again and thought we had beaten it.
Then another recurrence, in summer 2010, again at vaginal vault and also wrapped around my colon. Had major debulking surgery, then 6 cycles of Paclitaxel (Taxol) and Carboplatin. I am currently NED (no evidence of disease) and have a scan coming up in a couple of weeks.
Please don't be depressed by reading the statistics. A lot of information on the internet is out of date and frightening. Yes, it may be more challenging to cure when it recurs, but there are new treatments coming along all the time. The best advice I read was to see each treatment as a "leapfrog" forward towards remission. If the darned thing dares to recur again, by the time we need it, then there will most likely be another treatment available to "leapfrog" forward again. Hopefully we can survive a long time this way.
Right now, you have had to deal with so much in such a short space of time that it is no wonder that you feel the way you do - it is perfectly natural.
Perhaps it would help to get a second opinion, in case there are other options which might be appropriate for you? Perhaps if your tumour is ER+/PR+ (which means that is contains hormone receptors) then hormone therapy would be another possible option?
We are all different and there is no "one size fits all" with treatment - you need to go with what is right for you and get as much advice and information as you can before you make your decision.
Sending you warmest thoughts
Helen0 -
Noodles
That is the first time I had heard of the type of recurrence you had. How awful to think all was well and to hear that you had had a recurrence.
You mentioned that your husband is not so thrilled with the time you spend on the computer, so I took a moment to look up the trial you mentioned and found an update from the clinical trials.gov page that was posted today, that I thought you might be interested in since you are looking for some sort of information.
It is being tried in the US in 172 different places and it has been going on since 2009. That is good news. If there was a problem with the trial, it would have shown up by now.
Can't tell you how much I do hope this will work for your cancer. Fingers crossed. Heart thinking warm huggy thoughts.
This is the layout for the three different arms of the trial:
Treatment/Intervention:
Patients will be randomly assigned (have an equal chance of being placed) to one of three treatment groups.
Patients in group one will receive a 3-hour infusion of paclitaxel, an infusion of carboplatin, and a 30- to 90-minute infusion of bevacizumab on day 1. Treatment may repeat every 3 weeks for up to six courses. Patients will then receive a 30- to 90-minute infusion of bevacizumab every 3 weeks for as long as benefit is shown.
Patients in group two will receive a 3-hour infusion of paclitaxel and an infusion of carboplatin on day 1. They will also receive an infusion of temsirolimus on days 1 and 8. Treatment may repeat every 3 weeks for up to six courses. Patients will then receive an infusion of temsirolimus once a week for as long as benefit is shown.
Patients in group three will receive a 1-hour infusion of ixabepilone, an infusion of carboplatin, and a 30- to 90-minute infusion of bevacizumab on day 1. Treatment may repeat every 3 weeks for up to six courses. Patients will then receive a 30- to 90-minute infusion of bevacizumab every 3 weeks for as long as benefit is shown.
Patients will undergo tissue and blood sample collection for laboratory studies before or after starting treatment .
After finishing treatment, patients will be evaluated every 3 months for 2 years and every 6 months for 3 years.
Looks as though you can figure out which group you are in by keeping track of how long and how often you are given your drugs.
Claudia0 -
clinical trial GOG-0086Pnoodles886 said:Clinical Trial
There are actually 3 other drugs included in trial. From what I understand, it will be a randomized trial and participants will get 1 of the 3 drugs along with Taxel and Carbo. Study # is GOG-0086P
I have been on the trial that is under discussion since November 2010. I am in group 3-
carbo, ixabepilone and avastin for 6 cycles 3 weeks apart, and avastin alone every 3
weeks since then. I'm a patient at Sloan Kettering where I had optimal debulking
in September 2010 and was diagnosed UPSC stage 4B grade 3. NED since the surgery. I am
also on a radical anticancer diet-animal protein free, sugar free, dairy free but no
supplements-just vit D and a probiotic called Culturelle which cured severe diarrhea
caused by the chemo. Next week I'm meeting with a nutritionist at Sloan to discuss my diet
and will report anything interesting that he has to say.
Noodles, please ask me anything you wish to know about the trial .0 -
Clinical Trial GOG-0086Partist49 said:clinical trial GOG-0086P
I have been on the trial that is under discussion since November 2010. I am in group 3-
carbo, ixabepilone and avastin for 6 cycles 3 weeks apart, and avastin alone every 3
weeks since then. I'm a patient at Sloan Kettering where I had optimal debulking
in September 2010 and was diagnosed UPSC stage 4B grade 3. NED since the surgery. I am
also on a radical anticancer diet-animal protein free, sugar free, dairy free but no
supplements-just vit D and a probiotic called Culturelle which cured severe diarrhea
caused by the chemo. Next week I'm meeting with a nutritionist at Sloan to discuss my diet
and will report anything interesting that he has to say.
Noodles, please ask me anything you wish to know about the trial .
Artist49 - Is there any way I can get with you via e-mail? Are we allowed to contact each other away from the forums?0 -
private messagesartist49 said:clinical trial GOG-0086P
I have been on the trial that is under discussion since November 2010. I am in group 3-
carbo, ixabepilone and avastin for 6 cycles 3 weeks apart, and avastin alone every 3
weeks since then. I'm a patient at Sloan Kettering where I had optimal debulking
in September 2010 and was diagnosed UPSC stage 4B grade 3. NED since the surgery. I am
also on a radical anticancer diet-animal protein free, sugar free, dairy free but no
supplements-just vit D and a probiotic called Culturelle which cured severe diarrhea
caused by the chemo. Next week I'm meeting with a nutritionist at Sloan to discuss my diet
and will report anything interesting that he has to say.
Noodles, please ask me anything you wish to know about the trial .
Noodles, when you login, there seems to be an option for private messages. I never used it myself and my husband, the computer whiz, is not home right now. Try the CSN Email option.
Looking forward to connecting with you and helping in any way I can.
If you can't contact me, I will figure it out later when my husband comes home about 12:30 PM NY time.0 -
Private Messagesartist49 said:private messages
Noodles, when you login, there seems to be an option for private messages. I never used it myself and my husband, the computer whiz, is not home right now. Try the CSN Email option.
Looking forward to connecting with you and helping in any way I can.
If you can't contact me, I will figure it out later when my husband comes home about 12:30 PM NY time.
I sent you a private message. Thanks!0 -
private message problemnoodles886 said:Private Messages
I sent you a private message. Thanks!
Noodles, I am trying to send you a long private message but your email is not accepting
private messages. Please try to fix it so my message can go through.0 -
Private Messagesartist49 said:private message problem
Noodles, I am trying to send you a long private message but your email is not accepting
private messages. Please try to fix it so my message can go through.
OK, I think I fixed it. Thanks0 -
Sorry, Noodles, that younoodles886 said:Private Messages
OK, I think I fixed it. Thanks
Sorry, Noodles, that you are
Sorry, Noodles, that you are dealing with all this such a short time after surgery and Stage IB diagnosis. Your cancer was listed as Uterine Adenocarcinoma which refers to it being endometrial. Do you know what type and Grade it was? Ther are two types of endometrial cancer, Type 1, which is the more common endometroid type, and Type 2 which describes the rarer and usually more aggressive types: papillary serous, clear cell, etc. Also, your path report should note the Grade, from Grade 1 least aggressive to Grades 3 or4, most aggressive. This additional info can provide more prognostic expectations. You should have a new path report coming from this surgery as well. Since you have had no chemo or radiation to date, you have many options to pursue.
Annie0 -
Duplicate - see belownoodles886 said:PET/CT Scan Results
Just got back from gyn-oncologist and he gave me the PET/CT scan results. Positive news first -- nothing in lungs, liver, breast, spleen. Did find the cancer in the belly button area. He's not 100% sure how it got there -- said there is a lymph node that travels from uterus to belly button area and that could be the culprit. Told me this would be considered a local/regional recurrence and could be cured. Some spots were noted in my abdomen on PET/CT but of unknown origin. Could be scar tissue, previous infection, inflammation or cancer. He won't know until he does a scope. So tomorrow he will do a laproscopic scope and then surgery to remove cancerous tissue in belly button. If the abdominal spots turn out to be cancerous, that would considered a distant recurrence and very difficult to cure. Either way he is now considering both chemo and radiation. Still can't believe this is happening.
Duplicate - see below0 -
Path Reportsnowbird_11 said:Sorry, Noodles, that you
Sorry, Noodles, that you are
Sorry, Noodles, that you are dealing with all this such a short time after surgery and Stage IB diagnosis. Your cancer was listed as Uterine Adenocarcinoma which refers to it being endometrial. Do you know what type and Grade it was? Ther are two types of endometrial cancer, Type 1, which is the more common endometroid type, and Type 2 which describes the rarer and usually more aggressive types: papillary serous, clear cell, etc. Also, your path report should note the Grade, from Grade 1 least aggressive to Grades 3 or4, most aggressive. This additional info can provide more prognostic expectations. You should have a new path report coming from this surgery as well. Since you have had no chemo or radiation to date, you have many options to pursue.
Annie
I had the more common type of endometrial cancer, not papillary serous. It was Stage 1B, Grade 2. Unfortunately, because this has been classified a recurrence, there aren't many treatment options to pursue. Recurrences outside of the pelvic area are not usually curable - only treatable.0 -
Usually incurable ifnoodles886 said:Path Report
I had the more common type of endometrial cancer, not papillary serous. It was Stage 1B, Grade 2. Unfortunately, because this has been classified a recurrence, there aren't many treatment options to pursue. Recurrences outside of the pelvic area are not usually curable - only treatable.
Usually incurable if recurring refers to those who have been thru first line chemo for targeting any systemic cancer lurking post surgery. You have not done this yet, so do believe 'curable' is still a possibility for you. btw, unfortunately, I have been dealing with recurrences for 2 years so I am quite familiar with the 'incurable' designation.
Annie0 -
That's interesting, Anniesnowbird_11 said:Usually incurable if
Usually incurable if recurring refers to those who have been thru first line chemo for targeting any systemic cancer lurking post surgery. You have not done this yet, so do believe 'curable' is still a possibility for you. btw, unfortunately, I have been dealing with recurrences for 2 years so I am quite familiar with the 'incurable' designation.
Annie
That seems to concur with things my oncologist has said to me. I fought my first recurrence with radiotherapy and was clear for two and a half years (we were cautionsly optimistic that we had beaten it). But it did come back and after surgery for the second recurrence, I had chemo and asked "are we still aiming to cure this"? Her response was "yes, it's possible, but I also wouldn't be surprised if it surfaced again in a couple of years".
So perhaps first line chemo is where they set the bar for cure? I am currently waiting for a PET/CT scan on 15th November to see if it has come back yet again(getting some pelvic pains, which, could, of course, be caused by a myriad of things). Of course, I hope it hasn't, but, if it has, then I hope I can leapfrog forward to another patch of NED!0 -
Sounds like a good clinical trial.california_artist said:Noodles
That is the first time I had heard of the type of recurrence you had. How awful to think all was well and to hear that you had had a recurrence.
You mentioned that your husband is not so thrilled with the time you spend on the computer, so I took a moment to look up the trial you mentioned and found an update from the clinical trials.gov page that was posted today, that I thought you might be interested in since you are looking for some sort of information.
It is being tried in the US in 172 different places and it has been going on since 2009. That is good news. If there was a problem with the trial, it would have shown up by now.
Can't tell you how much I do hope this will work for your cancer. Fingers crossed. Heart thinking warm huggy thoughts.
This is the layout for the three different arms of the trial:
Treatment/Intervention:
Patients will be randomly assigned (have an equal chance of being placed) to one of three treatment groups.
Patients in group one will receive a 3-hour infusion of paclitaxel, an infusion of carboplatin, and a 30- to 90-minute infusion of bevacizumab on day 1. Treatment may repeat every 3 weeks for up to six courses. Patients will then receive a 30- to 90-minute infusion of bevacizumab every 3 weeks for as long as benefit is shown.
Patients in group two will receive a 3-hour infusion of paclitaxel and an infusion of carboplatin on day 1. They will also receive an infusion of temsirolimus on days 1 and 8. Treatment may repeat every 3 weeks for up to six courses. Patients will then receive an infusion of temsirolimus once a week for as long as benefit is shown.
Patients in group three will receive a 1-hour infusion of ixabepilone, an infusion of carboplatin, and a 30- to 90-minute infusion of bevacizumab on day 1. Treatment may repeat every 3 weeks for up to six courses. Patients will then receive a 30- to 90-minute infusion of bevacizumab every 3 weeks for as long as benefit is shown.
Patients will undergo tissue and blood sample collection for laboratory studies before or after starting treatment .
After finishing treatment, patients will be evaluated every 3 months for 2 years and every 6 months for 3 years.
Looks as though you can figure out which group you are in by keeping track of how long and how often you are given your drugs.
Claudia
Since you're still getting the drugs typically given in 1st line chemotherapy, this looks worthwhile to get into.
You mentioned that you thought clinical trials were entered when you ran out of other standard chemo options. With really promising new chemo combinations, the drug companies want the enrollees with the best chance of completing & succeeding with the new drug protocol. In fact, many of the clinical trials preclude anyone from enrolling who has already been extensively pre-treated with a bunch of other chemo drugs. So please don't think of a clinical trial as a 'last ditch' effort; in many cases you could be taking what will one day become standard protocol. I'd look hard at the side effects, judge them against the strength of my own body, and I'd probably go for it. ((((hugs))))0 -
Clinical Trialnoodles886 said:Path Report
I had the more common type of endometrial cancer, not papillary serous. It was Stage 1B, Grade 2. Unfortunately, because this has been classified a recurrence, there aren't many treatment options to pursue. Recurrences outside of the pelvic area are not usually curable - only treatable.
Hi,
I, too, am in this clinical trial. The goal is to enroll 330 women nationwide. I had initial treatment earlier this year. My surgery was nearly a year ago. I sought out the trial since I thought it would be my best option. I also eat a clean diet and gave up all alcohol.
Let me know if you have any questions.
Zarka0 -
clinical trial GOG-0086Plindaprocopio said:Sounds like a good clinical trial.
Since you're still getting the drugs typically given in 1st line chemotherapy, this looks worthwhile to get into.
You mentioned that you thought clinical trials were entered when you ran out of other standard chemo options. With really promising new chemo combinations, the drug companies want the enrollees with the best chance of completing & succeeding with the new drug protocol. In fact, many of the clinical trials preclude anyone from enrolling who has already been extensively pre-treated with a bunch of other chemo drugs. So please don't think of a clinical trial as a 'last ditch' effort; in many cases you could be taking what will one day become standard protocol. I'd look hard at the side effects, judge them against the strength of my own body, and I'd probably go for it. ((((hugs))))
Saw my gyn-oncologist today and agreed to take part in the clinical trial. Next Monday I will be having a port inserted and will probably start chemo right after Thanksgiving. Over the next few weeks will have tons of tests - blood, chest X-ray, EKG, pelvic exam, CT scan. Nervous wreck about the treatment but hopefully will calm down once I get started.
What is the port insertion procedure like? Is there pain afterwards? I'm still in a little bit of discomfort from my surgery on Nov. 1 so hoping this new procedure isn't too bad.0 -
Power Portnoodles886 said:clinical trial GOG-0086P
Saw my gyn-oncologist today and agreed to take part in the clinical trial. Next Monday I will be having a port inserted and will probably start chemo right after Thanksgiving. Over the next few weeks will have tons of tests - blood, chest X-ray, EKG, pelvic exam, CT scan. Nervous wreck about the treatment but hopefully will calm down once I get started.
What is the port insertion procedure like? Is there pain afterwards? I'm still in a little bit of discomfort from my surgery on Nov. 1 so hoping this new procedure isn't too bad.
I had it inserted as out-patient and really did very well after. Some getting used to it rubbing on my clothes (weird sensations). I had chemo 1 week later and did quite well. It's a dream, as I've got very small veins and had my first chemo with no port...wow was I a "pin cushion" on that first round. All other chemo's with port were much easier.
Very easy, rest assured and well worth the procedure.
Best of luck on all the tests and your clinical trial. Keep us all posted.
Jan0 -
Let me start by saying.....noodles886 said:clinical trial GOG-0086P
Saw my gyn-oncologist today and agreed to take part in the clinical trial. Next Monday I will be having a port inserted and will probably start chemo right after Thanksgiving. Over the next few weeks will have tons of tests - blood, chest X-ray, EKG, pelvic exam, CT scan. Nervous wreck about the treatment but hopefully will calm down once I get started.
What is the port insertion procedure like? Is there pain afterwards? I'm still in a little bit of discomfort from my surgery on Nov. 1 so hoping this new procedure isn't too bad.
....YOU WILL LOVE your port. Okay perhaps love goes to far, but you will like it alot. It saves so much time when you get chemo and your veins will thank you. That said, having just got a port a couple of months ago, it hurt more than I anticipated. It didn't hurt at all when they put it in but lets just say I was uncomfortable for a good week afterward.
The first few nights I could not lay on my port side which is the side I usually sleep on. I was also having an excruciating "catch your breath" burning pain every time I lifted or turned my head. But thankfully that ended up just being the surgical tape that was covering the catheter. It must have been pulling on my skin. Once I took off the tape the pain was gone. I did have chemo the day after I got my port, so it's possible these aches and pains were partially caused by the effects of chemo.
The only reason I mention them at all is so you are not surprised when it hurts a little more than the doctors tell you. Shoot, they sent me home without any pain medication at all. Fortunately I have a nice little stockpile at home.
All that said you will feel better once this is all behind you and you get started on your chemo. I know it's weird to say, but the chemo is very anti climatic or at least it was in my case.
Take care and don't let it ruin your Thanksgiving.
Cindy0 -
Port PlacementCindyGSD said:Let me start by saying.....
....YOU WILL LOVE your port. Okay perhaps love goes to far, but you will like it alot. It saves so much time when you get chemo and your veins will thank you. That said, having just got a port a couple of months ago, it hurt more than I anticipated. It didn't hurt at all when they put it in but lets just say I was uncomfortable for a good week afterward.
The first few nights I could not lay on my port side which is the side I usually sleep on. I was also having an excruciating "catch your breath" burning pain every time I lifted or turned my head. But thankfully that ended up just being the surgical tape that was covering the catheter. It must have been pulling on my skin. Once I took off the tape the pain was gone. I did have chemo the day after I got my port, so it's possible these aches and pains were partially caused by the effects of chemo.
The only reason I mention them at all is so you are not surprised when it hurts a little more than the doctors tell you. Shoot, they sent me home without any pain medication at all. Fortunately I have a nice little stockpile at home.
All that said you will feel better once this is all behind you and you get started on your chemo. I know it's weird to say, but the chemo is very anti climatic or at least it was in my case.
Take care and don't let it ruin your Thanksgiving.
Cindy
I have a regular port - for last 3 years. It was uncomfortable for about a week or 2 like Cindy said. But....I agree that it is a very good thing. It will save your veins from being affected by chemo.
Mine was an outpatient procedure at the hospital. EVERY nurse that has accessed my port for last 3 years has RAVED about it's placement and how well it functions. I can only credit the doc that put it in - a vascular surgeon. Apparently he knows his stuff. Not everyone does such a good job according to the nurses. So, in hindsight, I would encourage you to talk to discuss with the doc who will do surgery where he will PLACE the port. Mine is on the upper right of my chest tucked into a muscle. It does not interfere with my bra strap or seat belt when I drive. It is in the way of seat belt when I'm in the passenger seat. I have used weight machines, kayaked, done yoga, and other physical activities without any problem.
You will do fine. I wish you well. Mary Ann0
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