Recurrence After Only 7 Months

Kaleena

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.

Having a port is great.
Having a port is great. Like everyone says, it saves your veins. They have newer ports now that can be accessed for more things instead of chemo and blood draws. I had mine in for 5 1/2 years. Just had it taken out two months ago. All of it outpatient procedures.

My best to you.

Ro10

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.

I too had the port inserted as an out patient
I am so happy you are getting a port. I did 4 chemosynthesis without a port. Each lab and chemo required more sticks. I had a port inserted knowing that my UPSC would be like a chronic disease and would need more treatment later. I had a power port inserted. The power port can be used for CAT scans also as well as labs and chemo. I had minimal pain afterwards and no pain later. Good luck with your clinical trial. In peace and caring.

noodles886

Ro10 said:

I too had the port inserted as an out patient
I am so happy you are getting a port. I did 4 chemosynthesis without a port. Each lab and chemo required more sticks. I had a port inserted knowing that my UPSC would be like a chronic disease and would need more treatment later. I had a power port inserted. The power port can be used for CAT scans also as well as labs and chemo. I had minimal pain afterwards and no pain later. Good luck with your clinical trial. In peace and caring.

Diabetes and Chemo
Found out yesterday from clinical trial nurse that if my blood glucose is too high, I won't be permitted to participate in the trial. I am diabetic and my glucose has always been under control (without meds). Because of all the stress I've been having, my numbers have shot up. Now I'm stressing over the fact that I may not be able to participate in the trial. And I know chemo makes your blood glucose rise so I'm afraid I won't be able to have any chemo. Hubby is telling me to relax but my mind just keeps going round and round with everything bad.

CindyGSD

noodles886 said:

Diabetes and Chemo
Found out yesterday from clinical trial nurse that if my blood glucose is too high, I won't be permitted to participate in the trial. I am diabetic and my glucose has always been under control (without meds). Because of all the stress I've been having, my numbers have shot up. Now I'm stressing over the fact that I may not be able to participate in the trial. And I know chemo makes your blood glucose rise so I'm afraid I won't be able to have any chemo. Hubby is telling me to relax but my mind just keeps going round and round with everything bad.

Round and round is right....
It always seems to be something doesn't it. Don't worry about not being in the trial. There are certainly good reasons to be in one, but ultimately you want what is best for you. You will get chemo and once you start you will find that you worry less, or at least that is how it worked for me.

If the possibility of getting into that clinical trial is delaying the start of treatment, I might reconsider (my opinion only). It's obvious that it's stressing you out and that can't be good. Starting treatment will be the best medicine for your stress management.

Take care,
Cindy

Ro10

noodles886 said:

Diabetes and Chemo
Found out yesterday from clinical trial nurse that if my blood glucose is too high, I won't be permitted to participate in the trial. I am diabetic and my glucose has always been under control (without meds). Because of all the stress I've been having, my numbers have shot up. Now I'm stressing over the fact that I may not be able to participate in the trial. And I know chemo makes your blood glucose rise so I'm afraid I won't be able to have any chemo. Hubby is telling me to relax but my mind just keeps going round and round with everything bad.

Sorry for your stress
I am not sure the chemo raises your blood sugar as much as the steroids they give you. I hope you can relax and think of good things. In peace and caring.

janh_in_ontario

snyderpm said:

I had similar recurrence
Noodles, I am so sorry to read about what you are going through. I had a similar situation. I was told I had almost no cancer, just some cancer cells in my uterus, and nothing anywhere else. I had a complete histerectomy by the diVinci method. I had no complications. In 6 months it was back in my abdomen and omentum. Seeds in the lining of my abdomen and a 2cm tumor in my omentum. They quickly performed a laparotomy and scraped the seeds out and removed my omentum. After I had 4 rounds of chemo. I am now more than 7 months since my last chemo, and all my tests are very negative for cancer.

Personally, I think I was contaminated, and that could very well be what happened to you. I think a lot of people are contaminated. Contamination is one of the official ways cancer spreads, but doctors never talk about it. Contamination can also happen even before you have an operation to remove everything. It can happen during the biopsy. Personally, I would rather think I was contaminated, rather than it came back because the cancer is aggressive. I wonder why they are going to do radiation on you and not chemo? Good luck, and I hope you continue to post here, becasue it gave me a lot of hope, and understanding, and I would bet it will do the same for you.

Hi Snyderpm

Can I ask what your symptoms were for the recurrence in your abdomen and omentum? I had a full hysti in October last year but had some bleeding in July which my Dr determined to be "not serious". Nothing since - but I don't "feel right" in my abdomen. Sneezing or coughing hurts, I feel stiff around the belly, etc. I am overweight so I keep putting it off to that but deep down I am worried there is something more going on. Just curious what symptoms you had.

Thanks
Jan

noodles886

Ro10 said:

I too had the port inserted as an out patient
I am so happy you are getting a port. I did 4 chemosynthesis without a port. Each lab and chemo required more sticks. I had a port inserted knowing that my UPSC would be like a chronic disease and would need more treatment later. I had a power port inserted. The power port can be used for CAT scans also as well as labs and chemo. I had minimal pain afterwards and no pain later. Good luck with your clinical trial. In peace and caring.

Power Port
I had a power port inserted yesterday. Procedure was very easy for me. Doctor was great, told me everything he was going to do, and I was awake during whole procedure which lasted about 45 min. Didn't feel anything and minimal pain afterwards. Was a sore later in evening when anesthetic totally wore off but much better today. Amazing that the new ports are placed under the skin. Doesn't it hurt when nurse has to pierce skin to access the port?

jazzy1

noodles886 said:

Power Port
I had a power port inserted yesterday. Procedure was very easy for me. Doctor was great, told me everything he was going to do, and I was awake during whole procedure which lasted about 45 min. Didn't feel anything and minimal pain afterwards. Was a sore later in evening when anesthetic totally wore off but much better today. Amazing that the new ports are placed under the skin. Doesn't it hurt when nurse has to pierce skin to access the port?

Power Port
This is what I've got and so easy to access.

They should give you a prescription for a cream which numbs the area, whereas, the nurses that use a needle won't cause you any pain. All you'll feel is a slight prick, similar to when getting a shot in the arm,,,,,,that's it!! Easy as pie~

I've had mine for almost 3 years and don't even notice it.

Bet you're glad that's behind you, now off to treatments very soon.

Jan

daisy366

jazzy1 said:

Power Port
This is what I've got and so easy to access.

They should give you a prescription for a cream which numbs the area, whereas, the nurses that use a needle won't cause you any pain. All you'll feel is a slight prick, similar to when getting a shot in the arm,,,,,,that's it!! Easy as pie~

I've had mine for almost 3 years and don't even notice it.

Bet you're glad that's behind you, now off to treatments very soon.

Jan

Jan,
Just a suggestion. If your symptoms have lasted more than 2 weeks, I would talk to your doctor.

Mary Ann

Ro10

noodles886 said:

Power Port
I had a power port inserted yesterday. Procedure was very easy for me. Doctor was great, told me everything he was going to do, and I was awake during whole procedure which lasted about 45 min. Didn't feel anything and minimal pain afterwards. Was a sore later in evening when anesthetic totally wore off but much better today. Amazing that the new ports are placed under the skin. Doesn't it hurt when nurse has to pierce skin to access the port?

Glad your port insertion was uneventful
I know some use the cream before the port is accessed. I never felt the need for the cream. I do not think the stick is as bad as them looking for a vein in your arm. Especially if they have to stick you several times in the arm! Hope you treatments go well. In peace and caring.

Roena

It's Baaacck

Noodles,

I, too, have a reoccurrence - after less than 3 months!  Total hysterectomy and removal of omentum but no nodes.  Surgeon said microscopic cells that could not be "captured" would be taken care of by chemo.  6 rounds of Taxol/Carbo and we're back to same-old-same-old.  The only comment was that I presented at Stage IV (c).  My port was installed for the second round.  I still carry the reminder (hematomas) of being stuck in early June 2012.  The port makes life so much easier and safer.  The internet is a frightening place is much of the information is old and, like the online encyclopedia starting with a W, information can be adulterated by ANYONE!  Just started a new protocol to include Gemzar.  Went through it pretty much the same way I went through my early chemo without any side effects.  Actually the Taxol made me lose my hair and gave me flu symptoms for a day or two but nothing else.  Planning a second opinion (or third if you count the onc surgeon) at Duke in about 10 days. 

My advice - breathe deep.  There is much available for you.  Send your intellect on vacation.  Go to your happy place.  I know it sounds strange but if you are all wired up and tense, it is more harm than good.  You had some wonderful thoughts by the others on this group.  My thoughts for you are just as they are for me - be strong and love everyone around you and don't obscess.

Roena

noodles886

Roena said:

It's Baaacck

Noodles,

I, too, have a reoccurrence - after less than 3 months!  Total hysterectomy and removal of omentum but no nodes.  Surgeon said microscopic cells that could not be "captured" would be taken care of by chemo.  6 rounds of Taxol/Carbo and we're back to same-old-same-old.  The only comment was that I presented at Stage IV (c).  My port was installed for the second round.  I still carry the reminder (hematomas) of being stuck in early June 2012.  The port makes life so much easier and safer.  The internet is a frightening place is much of the information is old and, like the online encyclopedia starting with a W, information can be adulterated by ANYONE!  Just started a new protocol to include Gemzar.  Went through it pretty much the same way I went through my early chemo without any side effects.  Actually the Taxol made me lose my hair and gave me flu symptoms for a day or two but nothing else.  Planning a second opinion (or third if you count the onc surgeon) at Duke in about 10 days. 

My advice - breathe deep.  There is much available for you.  Send your intellect on vacation.  Go to your happy place.  I know it sounds strange but if you are all wired up and tense, it is more harm than good.  You had some wonderful thoughts by the others on this group.  My thoughts for you are just as they are for me - be strong and love everyone around you and don't obscess.

Roena

Haven't posted here in quite a while.  You can see my original postings at beginning of this thread.  I started a clinical trial in November 2011 and was doing well -- most the lesions I had either disappeared or shrunk.  I was on xabepolene, carboplatin, and avastin.  After 6 treatments I went on maintenace with only avastin.  In August 2012, a new lesion appeared and I was told I could no longer continue with trial.  Oncologist said I needed to take a break from chemo to build up my immune system and hopefully make my neuropathy better.  In October 2012 I had another CT scan whiich showed minimal growth so nothing was scheduled until December 2012.  That CT scan showed more growth and oncologist said I have more than when I started clinical trial.  I start another round of chemo (taxotere and carbo) on January 10.  I am losing hope and cry quite a bit.  I know some of you have been through many recurrences and I don't kinow how you cope.  Any advice would be greatly appreciated.

daisy366

noodles886 said:

Haven't posted here in quite a while.  You can see my original postings at beginning of this thread.  I started a clinical trial in November 2011 and was doing well -- most the lesions I had either disappeared or shrunk.  I was on xabepolene, carboplatin, and avastin.  After 6 treatments I went on maintenace with only avastin.  In August 2012, a new lesion appeared and I was told I could no longer continue with trial.  Oncologist said I needed to take a break from chemo to build up my immune system and hopefully make my neuropathy better.  In October 2012 I had another CT scan whiich showed minimal growth so nothing was scheduled until December 2012.  That CT scan showed more growth and oncologist said I have more than when I started clinical trial.  I start another round of chemo (taxotere and carbo) on January 10.  I am losing hope and cry quite a bit.  I know some of you have been through many recurrences and I don't kinow how you cope.  Any advice would be greatly appreciated.

Noodles

Boy, you hit the nail right on the head.  Staying hopeful is a real challenge.  And without it we essentially give up.  I wish I had a good answer for that. 

I'm dealing with 2nd recurrence and will know more after my PET scan next week.  It is very discouraging to fight and endure treatment and not get better.  My nurse kind of shocked me recently when she commented that maybe staying where I am now is the best we will be able to do.  Wow. While I'm shooting for NED they are giving up on that!!!!

I try to find solace in fact that it is still in lymph system and not organs.  Not sure how good that really is.  I wonder if recent throat problems are related to cancer (feelings of obstruction and bloody sputum - I see ENT Monday) - boy the mind can take me places!!

All I can do is give you big hug and take your hand virtually and ask you to continue on with me, Noodles.  Hang in there.  I do try to visualize my body fighting cancer successfully and I see a clean scan in my future (woo hoo).   Let's continue on together.  I'm so glad you wrote and gave the update.  Best wishes as you continue on.  Pleae keep us posted.  We are here for you - through thick and thin. 

Big virtual hugs, Mary Ann

NorahS

daisy366 said:

Noodles

Boy, you hit the nail right on the head.  Staying hopeful is a real challenge.  And without it we essentially give up.  I wish I had a good answer for that. 

I'm dealing with 2nd recurrence and will know more after my PET scan next week.  It is very discouraging to fight and endure treatment and not get better.  My nurse kind of shocked me recently when she commented that maybe staying where I am now is the best we will be able to do.  Wow. While I'm shooting for NED they are giving up on that!!!!

I try to find solace in fact that it is still in lymph system and not organs.  Not sure how good that really is.  I wonder if recent throat problems are related to cancer (feelings of obstruction and bloody sputum - I see ENT Monday) - boy the mind can take me places!!

All I can do is give you big hug and take your hand virtually and ask you to continue on with me, Noodles.  Hang in there.  I do try to visualize my body fighting cancer successfully and I see a clean scan in my future (woo hoo).   Let's continue on together.  I'm so glad you wrote and gave the update.  Best wishes as you continue on.  Pleae keep us posted.  We are here for you - through thick and thin. 

Big virtual hugs, Mary Ann

Noodles, listen to Mary Ann (daisy366)

...because there's another 'old' post on the front page (resurrected by the spammer)  titled "PET Scan results - Several nodes lit up again!" which Mary Ann started about a year ago. She dealt with that reoccurance and will deal with this one too!  

I know it's very hard not to overthink and overanalyse things when speed bumps on the road to NED appear, but I know you're both equal to the challenge.  

A big hug for you both, 

SharoN 

 

 

 

 

HellieC

noodles886 said:

Haven't posted here in quite a while.  You can see my original postings at beginning of this thread.  I started a clinical trial in November 2011 and was doing well -- most the lesions I had either disappeared or shrunk.  I was on xabepolene, carboplatin, and avastin.  After 6 treatments I went on maintenace with only avastin.  In August 2012, a new lesion appeared and I was told I could no longer continue with trial.  Oncologist said I needed to take a break from chemo to build up my immune system and hopefully make my neuropathy better.  In October 2012 I had another CT scan whiich showed minimal growth so nothing was scheduled until December 2012.  That CT scan showed more growth and oncologist said I have more than when I started clinical trial.  I start another round of chemo (taxotere and carbo) on January 10.  I am losing hope and cry quite a bit.  I know some of you have been through many recurrences and I don't kinow how you cope.  Any advice would be greatly appreciated.

Hang on in there

Please don't lose hope.  I think I know how you are probably feeling.  I, too, get regular waves of panic about my situation, but while I feel OK, I try to push it away in order to fight on.  When the panic hits, I sit myself down and say "is the end going to come today?".  Obviously, as I feel well, the answer is "no" (unless I get hit by the proverbial bus!).  So I tell myself that there's no point in worrying about a situation that hasn't arisen yet and I stand up and set about coping with the day.  In those dark days, I put all my concentration into the task in hand and don' t think beyond it.  Gradually, the panic subsides and I'll get a few "normal" days before it happens again. That's my way of coping with this beast - it has taken so much from me,  physically, and I intend to keep it's claws away from my mind as long as I can. I figure that my days may be numbered, but I want to enjoy them as much as I can.

By the way - I am in treatment for my 3rd recurrence.  Had hysterectomy in 2001 for suspected cancer, but none was found on pathology, so was told cancer free and all clear.  First recurrence (7 years later) at vaginal vault treatment with radiotherapy, 2nd recurrence (2.5 years later) in pelvis treated with debulking surgery and 6 cycles of carbo/taxol.  Third recurrence in pelvis (18 months later) mostly on left pelvic sidewall considered inoperable and incurable.  I am being treated with Letrozole (Femara) which is an aromatase inhibitor which stops the body producing oestrogen and "starves" the tumour.  (I have adenocarcinoma which is both oestrogen and progesterone receptor positive). So far, one tumour has shrunk and is no longer visible and the other shows some signs of shrinkage.  I know that this will eventually come back, but I hope to be here for a good while longer.  I understand that it is possible for these hormone therapies to work for several years and when one stops sometimes a different one will work.  So that's the path I'm going to tread as it is such an easy treatment for me with, so far, few side effects.  I'm not quite sure what kind of tumour you have, but it might be worth getting it tested for hormone receptors to see if this is a possible treatment for you?

Kindest wishes

Helen

SuziDezi

HellieC said:

Hang on in there

Please don't lose hope.  I think I know how you are probably feeling.  I, too, get regular waves of panic about my situation, but while I feel OK, I try to push it away in order to fight on.  When the panic hits, I sit myself down and say "is the end going to come today?".  Obviously, as I feel well, the answer is "no" (unless I get hit by the proverbial bus!).  So I tell myself that there's no point in worrying about a situation that hasn't arisen yet and I stand up and set about coping with the day.  In those dark days, I put all my concentration into the task in hand and don' t think beyond it.  Gradually, the panic subsides and I'll get a few "normal" days before it happens again. That's my way of coping with this beast - it has taken so much from me,  physically, and I intend to keep it's claws away from my mind as long as I can. I figure that my days may be numbered, but I want to enjoy them as much as I can.

By the way - I am in treatment for my 3rd recurrence.  Had hysterectomy in 2001 for suspected cancer, but none was found on pathology, so was told cancer free and all clear.  First recurrence (7 years later) at vaginal vault treatment with radiotherapy, 2nd recurrence (2.5 years later) in pelvis treated with debulking surgery and 6 cycles of carbo/taxol.  Third recurrence in pelvis (18 months later) mostly on left pelvic sidewall considered inoperable and incurable.  I am being treated with Letrozole (Femara) which is an aromatase inhibitor which stops the body producing oestrogen and "starves" the tumour.  (I have adenocarcinoma which is both oestrogen and progesterone receptor positive). So far, one tumour has shrunk and is no longer visible and the other shows some signs of shrinkage.  I know that this will eventually come back, but I hope to be here for a good while longer.  I understand that it is possible for these hormone therapies to work for several years and when one stops sometimes a different one will work.  So that's the path I'm going to tread as it is such an easy treatment for me with, so far, few side effects.  I'm not quite sure what kind of tumour you have, but it might be worth getting it tested for hormone receptors to see if this is a possible treatment for you?

Kindest wishes

Helen

To the 'hangin in' crowd

Thanks to Marianne ad Hellie who, along with Ro, are mainstays of this group. I too am dealing with a second recurrence - taxol/carbo again. This time it involves weekly infusions for 3 weeks and then 1 week off. Since it is my 3rd round of these chemicals my body seems to be in a much more rebellios mode - and the schedule doesn't give it much time to recuperate. Finally we took the decision to delay the next 2 infusions (after 10 weekly ones, meaning 3 full doses) so I will be strong enough to have a CT scan this Friday and then see the docs the following Tuesday. It is easy to get discouraged. But then there is a better day, the sun breaks through the winter clouds and hope returns - battered but still there. I will spend the week regaining strength, perhaps even seeing a movie and/or having my nails done.

Thanks ladies of this sisterhood for sharing stories - they keep me going. And good luck to each and every one of us. Big hugs to all.

Ro10

SuziDezi said:

To the 'hangin in' crowd

Thanks to Marianne ad Hellie who, along with Ro, are mainstays of this group. I too am dealing with a second recurrence - taxol/carbo again. This time it involves weekly infusions for 3 weeks and then 1 week off. Since it is my 3rd round of these chemicals my body seems to be in a much more rebellios mode - and the schedule doesn't give it much time to recuperate. Finally we took the decision to delay the next 2 infusions (after 10 weekly ones, meaning 3 full doses) so I will be strong enough to have a CT scan this Friday and then see the docs the following Tuesday. It is easy to get discouraged. But then there is a better day, the sun breaks through the winter clouds and hope returns - battered but still there. I will spend the week regaining strength, perhaps even seeing a movie and/or having my nails done.

Thanks ladies of this sisterhood for sharing stories - they keep me going. And good luck to each and every one of us. Big hugs to all.

Suzi continue to hang in there

Sorry to hear yet that the chemo is taking such a toll on you.  I know my third round of chemo was harder for me.  Hope your CAT scan shows that the chemo is working for you.   Enjoy your chemo break.  Glad you will be doing something you enjoy.  In peace and caring.

GabbyMaude

Treatment for recurrence

Hi noodles - recurrent cancer is tough - I was diagnosed with stage 4 uterine/endometrial cancer three years ago.  I am about to enter treatment for my 3rd recurrence, but am still doing well.  I am 68 and still working full time - so happy I can continue my work as a community college reading specialist!  My doctor this time gave me three options for treatment - none sounds lovely.  The first, adriamycin, causes heart problems.  Megase and Tamoxifin cause weight gain and possible blood clots (I've already had a blood clot and am on blood thinners for three years!  Bruise city!)  I will probably go with the third option - taxol.  I have had 18 moonths of taxol in varying strengths - my cancer doesn't like it, andit has held the little devils at bay.  Be sure to check out all options and side effects - I had readiation for a recurrence in lymph nodes of my neck - Intensity Modulated Radiation plus hydrotherapy.  While the 45 treatments (daily for 9 weeks) did cause those nodes to disappear, I now have a new neck node plus others in the tissue behind my heart.  If your doc advises IMRT, be sure your insurance will pay.  The hospital didn't check for me, and I had to fight for 18 months through three appeals before Unicare paid.  Best of luck and hang in there!  Our attitude is the important component here! 

Double Whammy

GabbyMaude said:

Treatment for recurrence

Hi noodles - recurrent cancer is tough - I was diagnosed with stage 4 uterine/endometrial cancer three years ago.  I am about to enter treatment for my 3rd recurrence, but am still doing well.  I am 68 and still working full time - so happy I can continue my work as a community college reading specialist!  My doctor this time gave me three options for treatment - none sounds lovely.  The first, adriamycin, causes heart problems.  Megase and Tamoxifin cause weight gain and possible blood clots (I've already had a blood clot and am on blood thinners for three years!  Bruise city!)  I will probably go with the third option - taxol.  I have had 18 moonths of taxol in varying strengths - my cancer doesn't like it, andit has held the little devils at bay.  Be sure to check out all options and side effects - I had readiation for a recurrence in lymph nodes of my neck - Intensity Modulated Radiation plus hydrotherapy.  While the 45 treatments (daily for 9 weeks) did cause those nodes to disappear, I now have a new neck node plus others in the tissue behind my heart.  If your doc advises IMRT, be sure your insurance will pay.  The hospital didn't check for me, and I had to fight for 18 months through three appeals before Unicare paid.  Best of luck and hang in there!  Our attitude is the important component here! 

To all you amazing women

Please keep doing what you need to so you can keep doing what you want to.  My hopes and prayers are with you all as you continue your struggles. 

Suzanne