Results of PET Scan

Nflinchum

Hi Everyone,

I got the results of my PET scan yesterday. It wasn't the best news. I have developed some new cancer in the abdominal area. One being a tumor about an inch long which is in my incision hernia. Also there are several enlarged lymph nodes. At least it is all contained in the abdominal area so that was a plus. I have ascites as well. I have several options since I wasn't responding to carboplatins we are stopping that drug. The Dr. said he wanted me to go back to Charlotte where I was in a clincial trial after I had my debulking surgery wants me to get a second opinion from the doctor that treated me there. He was also checking into trying to if there were some clinical trials I could get into. He was very upfront with me and told me that he could not cure me of this cancer which I already knew that. So he gives me the choice to try something else as in Doxil and make me very sick with the chemo drugs or I can choose not to take any drugs and live my life feeling decent right now. He made me feel like there is nothing else he can do for me so I am going to get second opinions. Julie I know you have been on Doxil what side effects did you have?

I did inquire about having surgery to remove the turmor and lymph nodes but was told they can't take out all of those lymph nodes.  Needless to say I am totally confused. Does anyone have imput on this?  Are your doctors able to give you a prognosis? I have heard also if it comes back in 6 months there is very little chance of getting it in remission.  I was in remission 6 to 7 months so I am on border line. So the bottom line is my decision to take more chemo or not take any. Thanks Ladies. As always m thoughts and pravers are with you ladies.

Nadine

seatown

Don't give up!

Oh, Nadine, I am so sorry to hear this news. Was hoping for much better news for you. I hope the second opinion can offer something more. There seem to be more and more options every day, so maybe the person in Charlotte will have something better for you. I hope so!

As to the specifics of treatment--I have no opinion to offer, since the only things I've ever been on have been Carboplatin/Taxol and now Avastin. As you know, I've been lucky to have good results from them. But I'm sure others on this site will have plenty of thoughts for you.

I'll be thinking of you and waiting to hear of the next steps in your journey. Thank you for all your kind words. Best of luck.

Carole

abrub

Is it possible that your cancer is of appendiceal origin?

My tumors in the peritoneum were mets from my appendix cancer.  I had careful debulking and intra-peritoneal chemo.  I also had systemic chemo with the colorectal drugs:  5FU, Oxaliplatin.

I do know that many with my type of cancer are mis-diagnosed and treated for an ovarian primary (which is where my cancer was found - encompassing my ovary.) Have them reassess your tumor type.  You may have options that aren't being considered. 

By the way, I am 6+ years and 2 incisional hernias out from my diagnosis.

JulieBelle

So sorry Nadine

Do hope you can get some more encouragement from your second opinion - if not go for a third!!  There are certainly lots of different meds out there and in the US you have far more than we have in Australia to choose from.

Yes I have been on Doxil (Caelyx here) for my first recurrence after Carbo/Taxol (just 3 months out so not sure that I was actually in remission!!).  Unfortunately that didn't work for me but it does for many others. I had 3 cycles but had awful hand and foot syndrome (quite unusual I was told - most don't get it like that) with very bad body rash but terrible blistering on hands and feet which had to be dressed every 2nd day for about 6 weks. If it was working I would have persevered though.  After that I went onto Gemzar to which was added Cycloblastin, then Topotecan to which we added Avastin and finally I am seeing some reduction in my CA125.  This week I started Etoposide with Avastin so fingers crossed the numbers will continue going down!

I haven't asked for a prognosis  - maybe burying my head in the sand!! - as I know it can't be cured at this time but I am content if  it is treated as a chronic illness until something comes along!!  I know a lady here who was on chemo for over 5 years with PPC and has now been in remission for 18 months so stories like that help to keep one positive!

Keep your chin up and seek out other opinions!

Sending you strength, positivity and cyber hugs.

Julie x

Nflinchum

JulieBelle said:

So sorry Nadine

Do hope you can get some more encouragement from your second opinion - if not go for a third!!  There are certainly lots of different meds out there and in the US you have far more than we have in Australia to choose from.

Yes I have been on Doxil (Caelyx here) for my first recurrence after Carbo/Taxol (just 3 months out so not sure that I was actually in remission!!).  Unfortunately that didn't work for me but it does for many others. I had 3 cycles but had awful hand and foot syndrome (quite unusual I was told - most don't get it like that) with very bad body rash but terrible blistering on hands and feet which had to be dressed every 2nd day for about 6 weks. If it was working I would have persevered though.  After that I went onto Gemzar to which was added Cycloblastin, then Topotecan to which we added Avastin and finally I am seeing some reduction in my CA125.  This week I started Etoposide with Avastin so fingers crossed the numbers will continue going down!

I haven't asked for a prognosis  - maybe burying my head in the sand!! - as I know it can't be cured at this time but I am content if  it is treated as a chronic illness until something comes along!!  I know a lady here who was on chemo for over 5 years with PPC and has now been in remission for 18 months so stories like that help to keep one positive!

Keep your chin up and seek out other opinions!

Sending you strength, positivity and cyber hugs.

Julie x

Thanks ladies

Thank you Julie. I appreciate all your info for it helps me. Sounds like you have been on a lot of chemo. You amaze me for you just got out of the hospital, had chemo and you were able to take a walk. They want me to exercise also but I am always so tired especially after working all day and taking care of my six year old granddaughter. Plus I have neuropathy so bad in my feet. 

It have all my appointments set up over the next two weeks. I go tues to get the fluid drawn off my tummy. I am going to Duke University Hospital thurs. for a second opinion and possible clinical trials. Then the following week to Charlotte for the third opinion then back to my dr to decide what is the best thing for me. I am a survivor and a fighter. I have my down moments but I have cancer but cancer don't have me.

thanks Carole and Julie for all your kind words. Hang in there my thoughts are with you.

nadine