Stage IV second opinion

habber

Hello All!

Wondering about my diagnosis: Pathology of plueral fluid, diffuse omental stranding on CT, CA 125 3100
No biopsy
No ultrasound pelvic. (does this seem right?)

I just got a PICC port today and start chemo tomorrow.

Today is the first time anyone sat down and spoke with me about what to expect. At diagnosis, both the doctor and nurse said my chemo (taxo /Carb) was "easy" would cause very little fatigue or nausea, I would be able to work just fine. Today,it was an entirely different story from the chemo nurse, plus the woman who placed the PICC line (an independent contractor) hesitated to say "anything bad" about Tulane Hospital but did say she "thought highly" of Touro Hospital.

It will be good to get the chemo started now and then a second opinion--which is what I should have been doing.
Am wondering if anyone has information on GYN Oncology surgeons in the southeast (I live in New Orleans). I may have a great one, William Robinson, but still.......

Warm Regards

Sandy

poopergirl14052

there are side effects from chemo
carbo/taxol causes bone and joint pain, some nausea { they have great new drugs to keep it under control} and you may be very tired. You may not be able to go to work right after chame, maybe 5 days or so. I wonder why you have a picc and not a port. I think I would get a second opinion too. Something doesn't sound right. I s you dr a gyn/onc?? Did you you have major surgery done to remove your cancer??? You can google gyn/onc in your state and find one close to you. Good luck with your chemo tomorrow...val

jonnie71

second opinion
I am all for a second opinion. We were getting ready to do major surgery and chemo when my dr wanted a second opinion on the biopsy. Now they are saying a lower malignancy tumor and maybe not even chemo... now waiting a 3rd opinion.
I agree with the last post. Something doesn't sound right. I would defenitely get another opinion. Maybe even before Chemo, thats just my thoughts but I don't know all the details of your situation. Always follow your gut. Insisting on a CT scan at an ER visit for something else is what led to the detection of my tumor. You will be in my prayers. Let me know if I can help in anyway.
Jonnie

habber

poopergirl14052 said:

there are side effects from chemo
carbo/taxol causes bone and joint pain, some nausea { they have great new drugs to keep it under control} and you may be very tired. You may not be able to go to work right after chame, maybe 5 days or so. I wonder why you have a picc and not a port. I think I would get a second opinion too. Something doesn't sound right. I s you dr a gyn/onc?? Did you you have major surgery done to remove your cancer??? You can google gyn/onc in your state and find one close to you. Good luck with your chemo tomorrow...val

picc and nausea
Thanks, all went fine. Three rounds chemo before surgery, then 6 more (IP?) after. I have a picc because they screwed up on getting me an appointment to get a port put in. (I actually missed my second appointment today while in chemo) Since it is only until the first on August when I get surgery maybe i"ll just keep the picc.

poopergirl14052

jonnie71 said:

second opinion
I am all for a second opinion. We were getting ready to do major surgery and chemo when my dr wanted a second opinion on the biopsy. Now they are saying a lower malignancy tumor and maybe not even chemo... now waiting a 3rd opinion.
I agree with the last post. Something doesn't sound right. I would defenitely get another opinion. Maybe even before Chemo, thats just my thoughts but I don't know all the details of your situation. Always follow your gut. Insisting on a CT scan at an ER visit for something else is what led to the detection of my tumor. You will be in my prayers. Let me know if I can help in anyway.
Jonnie

how are you feeling today??
hope you are well and getting lots of rest and fluids. I hope you didn't work today!!..val

Best Friend

what kind?
What kind of cancer were you diagnosed with? My mother has PPC. Peritoneal. She is also on Carboplatin and Taxol. Her doctor decided to do the chemo first(3 times) and than the surgery. He said this way when he goes in it won't have to be so invasive. Hers has spread quite a bit. She had her first chemo 2 weeks ago. Everyone kept saying everyone is different as far as how it is handled. All I know is my mom did pretty horrible. I think alot of it was depression because it's the first one and you can't imagine doing it over and over. I remember her very bad bone and joint pain. Didn't know if it was from the taxol or the shot they give you the next day called Nuelasta(? spelling). Her nausea was the least of it. The meds for that were pretty decent. She didn't eat alot at all and than taking pain meds she got sick. The doc switched her antidepressant and gave her sleeping pills to make her just sleep. I just was with her every day. I knew she needed me. She would say she didn't want toast i would make it anyway and sit it there. She would say no pain meds. I would hand them to her and make her take them. I think some people can work and some can't. Maybe as time goes and you get ur side effects planned out. But my mom is retiring. Especially because the surgery could take up to 8 weeks to heal.
I guess you just need to go into the first chemo knowing it is going to be what it will be for you and you alone and no matter what you think or feel, you WILL do it. My mom went through that fight mentally and i kept telling her tomorrow you will feel a little better and than the next day a little better. Her side effectys kicked in like 2 days later. so from the time she got it took her like 10 days to start feeling herself and eating.
Just don't give up! It's like going into war. Make sure you have a partner you can count on to help you. Good luck!

Hissy_Fitz

I would say they skipped the
I would say they skipped the ultrasound and went straight to a biopsy and CT scan.

I would beg to differ, however, that Carbo/Taxol is "easy." I had 8 rounds of it and it took 6 pints of blood and many injections to keep my RBC up. I definitely had nausea and extreme fatigue. Your mileage may vary, of course.

A second opinion is never a bad idea, in my opinion.

Keep us posted.

Carlene

habber

Hissy_Fitz said:

I would say they skipped the
I would say they skipped the ultrasound and went straight to a biopsy and CT scan.

I would beg to differ, however, that Carbo/Taxol is "easy." I had 8 rounds of it and it took 6 pints of blood and many injections to keep my RBC up. I definitely had nausea and extreme fatigue. Your mileage may vary, of course.

A second opinion is never a bad idea, in my opinion.

Keep us posted.

Carlene

Thanks all.
I agree, Carbo/Taxol is definitely not easy. The bone pain and abdominal pain is pretty bad. I wish I had been better prepared. What have you all (or your mothers) taken for the pain after chemo?

I don't know what type of OC I have since no biopsy.

I saw a new shrink the day who, like me, is into Zen Buddism. He gave me, what I felt was good advice. I could never "make" hy husband stop drinking and that the anger I felt was, in turn, killing me. So the best thing for me right now was simply unconditional love towards both hubbie and me. Sounds hokey, I know. We even did some breathing in spirit/love exercises. But it's proven helpful, the patience and kindness I have toward him, are returned twice over. And except for alcohol his other qualities are really stellar.

Anyone have experience at MD Anderson?

Lmm041

habber said:

Thanks all.
I agree, Carbo/Taxol is definitely not easy. The bone pain and abdominal pain is pretty bad. I wish I had been better prepared. What have you all (or your mothers) taken for the pain after chemo?

I don't know what type of OC I have since no biopsy.

I saw a new shrink the day who, like me, is into Zen Buddism. He gave me, what I felt was good advice. I could never "make" hy husband stop drinking and that the anger I felt was, in turn, killing me. So the best thing for me right now was simply unconditional love towards both hubbie and me. Sounds hokey, I know. We even did some breathing in spirit/love exercises. But it's proven helpful, the patience and kindness I have toward him, are returned twice over. And except for alcohol his other qualities are really stellar.

Anyone have experience at MD Anderson?

MD Anderson
Have nothing but good things to say about MD Anderson. Was diagnosed March,2010, stage IV. Saw an oncologist in my home city of Corpus Christi who sent me straight to MD Anderson. I was assigned to Dr. Robert Coleman. They did CT biopsy, then started me on the carbo/taxol chemo for 3 rounds to shrink tumors around colon. Had de-bulking surgery in June, then 3 more rounds of carbo/taxol. The CT scan after showed No Evidence of Disease(NED). Dr. Colman worked well with my oncologist in Corpus. Have had most of my chemo treatments right here at home. Anyone can deliver the poison, it's the Plan of Care and the surgery that is soooo important.

Don't know why your doctors told you that the carbo/taxol was so easy! What an idiot. I ended up in the ER after my first infusion with abdominal/pelvic pain so bad I thought I was going to die. All I could do was sit and cry and I am not a wussy by any stretch of the imagination. My dear husband was on the phone the whole time with a doctor who was in Dr. Colman's service. She was very concerned than I had a ruptured colon. She wanted me air lifted back to MD Anderson that night, but CT scan showed no rupture. After much discussion doctors in Houston finally concluded that pain was from massive cancer kill off! WooHoo!

Here I am, 14 months after diagnosis, still alive and still NED. Thank you Dr. Colman and MD Anderson.

Cindy (Lmm041's wife!)

habber

Lmm041 said:

MD Anderson
Have nothing but good things to say about MD Anderson. Was diagnosed March,2010, stage IV. Saw an oncologist in my home city of Corpus Christi who sent me straight to MD Anderson. I was assigned to Dr. Robert Coleman. They did CT biopsy, then started me on the carbo/taxol chemo for 3 rounds to shrink tumors around colon. Had de-bulking surgery in June, then 3 more rounds of carbo/taxol. The CT scan after showed No Evidence of Disease(NED). Dr. Colman worked well with my oncologist in Corpus. Have had most of my chemo treatments right here at home. Anyone can deliver the poison, it's the Plan of Care and the surgery that is soooo important.

Don't know why your doctors told you that the carbo/taxol was so easy! What an idiot. I ended up in the ER after my first infusion with abdominal/pelvic pain so bad I thought I was going to die. All I could do was sit and cry and I am not a wussy by any stretch of the imagination. My dear husband was on the phone the whole time with a doctor who was in Dr. Colman's service. She was very concerned than I had a ruptured colon. She wanted me air lifted back to MD Anderson that night, but CT scan showed no rupture. After much discussion doctors in Houston finally concluded that pain was from massive cancer kill off! WooHoo!

Here I am, 14 months after diagnosis, still alive and still NED. Thank you Dr. Colman and MD Anderson.

Cindy (Lmm041's wife!)

Thanks Cindy
I had a very similar experience with the Carbo/Taxol. Felt like someone had been doing a hoedown on my stomach in golf cleats! Today is much better. My plan is similar, except 6 rounds after surgery. I really don't know if I'll be able to tolerate it, but I've read even a few rounds of IP chemo after surgery is supposed to greatly improve survival and you are testament to that!