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Feeling Devastated

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

Yesterday I saw my Oncologist for CA125 result etc to receive news that for the 3rd time in a row my numbers have increased!   (179-203-265-329)   I have had 5 rounds of Gemcetabine and oral cytoxan (cycloblastin) so those aren't helping!   Next week I start on Topotecan - treatment 3 days in a row and again in 21 days.   This will be my fourth chemo regime in 14 months - carbo/taxol, doxil (caelyx), gemcetabine/cytoxan and now this!   Will I ever get into remission???   My cancer is Stage 4 and i realise it is tough to crack but how much can it take before it gives up???   Thankfully I am feeling so well in myself and I am so so grateful for that.   I am eating well, exercising and seeing my naturopath who is helping me keep my body and bloods in the best possible shape.   My baby grandson also such a blessing and I try not to think about not being around as he grows up. I am normally so positive but this has really shattered me!   Sorry to lay this out there but what to do???   Just keep on keeping on I guess!   Thank you all for being out there!  We are just back from a lovely 10 day holiday in New Zealand when I tried really really hard not to think about the dreaded "C" word and enjoyed ourselves.  I have some work to do to get myself back up there on the positivity scale!

Love to all, Julie (Australia)    

stella65
Posts: 150
Joined: Feb 2011

Hi Julie, I am so sorry to hear you are having number troubles!  Have you had a scan, do you know for sure that the high numbers are cancer related?  It sounds as if you are otherwise doing really well so don't let those numbers get you down, really pleased to hear you had a lovely holiday.  I am sending you love and positive thoughts

SueX

 

 

 

 

seatown's picture
seatown
Posts: 207
Joined: Sep 2012

So, so sorry to hear that the numbers are increasing. Is it possible there is an unexpected factor causing the rise? I. e., I was told my Feb. surgery could cause a CA 125 increase -- but luckily it didn't. In fact I'm feeling grateful & lucky that my own CA 125 number is now at 19 as chemo continues.

I'm sure the right combo of drugs, etc., will be found soon. Glad to hear you enjoyed your holiday. Good luck to us all!

 

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

Really appreciate your posts.  Our 45th wedding anniversary tomorrow - I aim to be here for the Golden 50th!   Looking forward to celebrating with my darling.

Julie x

Nflinchum
Posts: 73
Joined: Jun 2012

Hi Julie I'm so sorry you are having a tough time. I have been in remission for 8 months. My CA's are also climbing 48/68/116/338. i had a ct scan in nov,feb,April not anything visible to the eye. The dr is suspicious so he wants to take a look in my tummy to see if there are any cancer seeds in there. I have a hernia from my debulking surgery which was a year ago dec. so they are going to repair that and take a look. I'm not too excited about another surgery. He can't give me chemo for there is no prognosis. You seem like you are feeling well. I never feel good. I know it hard to stay positive. Hang in there. You are in my thoughts and prayers.

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

A shame your great remission is now showing increasing numbers.   I do hope the surgery for the hernia goes well and yes, that will give the Drs a chance to see what else is happening.  Frustrating when nothing shows up on the CT but numbers are increasing and you feel something not right.   I do hope they can find the answer for you and get you on the road to feeling better.   Yes I am feeling well thank you and my hair is growing so strong and thick!   Have been told I may lose it again but never mind - at least now I know it comes back and I know how to tie the scarves to best advantage!   I am now looking forward to this new chemo next Tuesday and thinking, hoping, praying that this will be the one that gives me a remission!   

Julie x

PatsieD
Posts: 100
Joined: Jun 2012

Hi Julie.. you've really been through the mill but I'm so glad you are feeling well in yourself. This illness is hard emotionally as well as having to deal with everything else. I'm not sure about the way CA125 is tracked as we know the number can rise for other reasons. We can only be guided by our doctors. My own illness is not shown by either CT or CA125, although it's a little more trackable now that the marks on my lungs and on the surface of the liver have been identified as clusters of the microscopic disease I have throughout the abdomen. I feel a lot better than I did but I wonder if my disease isn't being picked up. It's ages since I had a scan and I do get very tired. I've been told that I won't have any treatment until definite signs of the illness like ascites shows up again which is when another CT will be done. This not knowing thing is hard. My doctors know that the disease is growing at the moment but not enough to start treatment but it was ages ago when this was found out. Never mind. I should just hope and pray and for you too... . I know the answer to our problems is just around the corner as there are new treatments coming out all the time. x

lulu1010's picture
lulu1010
Posts: 367
Joined: Feb 2011

I am not understanding why they cant give you chemo. I was on Doxil and it was working but suddenly stopped. My CA numbers started to rise instead of going down and the scans showed nothing. They decided that the cancer was seeding and not visible on scans. Changed me to Carbo and that took care of the problem.  I hope your surgery goes well and they dont fool around too long getting to the root of the problem

Nflinchum
Posts: 73
Joined: Jun 2012

Thanks,Julie. I will keep you posted. My hair is finally about 4 inches long. It has been growing since June of last year. I'm glad yours is coming back. i hope all goes well with your chemo. Keep us posted. You are in my prayers.

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

I have now had two of my three treatments - No. 3 coming up today - and so far so good thankfully!   I have had minimal nausea, worst the first day as I didn't take my extra meds but learned from that and yesterday was much better.  

Darling daughter cooked us a lovely dinner last night and hubby and I were also there when their beautiful son  (our one and only grandchild) had his first taste of solid food (5-1/2 months old).  He loved it and so did we!  It was such a wonderful moment to be part of!  

Had a great trip to New Zealand but have unfortunately had to cancel a planned trip to Canada for later this year however will replace it with shorter trips within Australia.  I have a list on the frig and keep adding to it!   Enjoying every day and having things to look forward to so important.   Simple things are very special.  I have a few girlfriends coming here for simple morning tea at the weekend and we will have lots of giggles and fun!  

My best wishes to you all and thank you so much for being there.  Such wonderful support.   Next big step after today will be that CA125 in 2 weeks!  

Julie x   

seatown's picture
seatown
Posts: 207
Joined: Sep 2012

Glad to hear you seem to be tolerating the new drug regimen well.  I'll be looking forward to hearing about improvement in your CA 125 number.  You are a continuing inspiration to me!  Best wishes . . . . 

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi all:  I haven't been using this website for a bit as I've been in and out of hospital and dealing with a lot of pain.  We're not sure exactly where it is coming from.  When I stand or walk, it feels like my insides are falling downwards and on the way maybe ripping whatever they are attached to (if that makes any sense!).  I think a lot of it is scar tissue from the 4 surgeries and then radiation I had on the liver.  Luckily for me, when I lie down or even sit down, the pain subsides and goes away.  Until I stand up again.  I've only got about 5-10 minutes standing/walking time before the pain hits.  Generally, it feels like an acidy thing like orange juice is being poured on open sores, although another pain is like a hot poker being stuck into my abdomen.  Sounds gruesome I know! But I have had no pain at all since diagnosis in Oct 2009 even with the 4 surgeries.  I also had a blockage of the colon and internal bleeding.  A couple of CT scans showed a tumour perhaps growing around the colon and so narrowing it.  But stuff still gets through. 

Has anyone had pains like these within the abdomen?

My oncologist doesn't believe in the validity of CA numbers so I never get tested.  I did have one test but my CA numbers were all within normal range.

How are you doing, Julie, after the 3rd and final chemo? My oncologist has convinced me that more chemo will not do any good as my colon system won't withstand the chemicals.  I had a perforated bowel last summer mostly caused by the strong chemicals that eroded the lining of the colon.

Cheryl

 

 

 

JulieL's picture
JulieL
Posts: 141
Joined: Jan 2012

So sorry to hear you are having such pain!   Do hope the Drs can find where it is coming from and do something to help you.   I am due to have my second round of Topotecan next Tuesday Wednesday and Thursday. I will have my bloods done Monday and get that result early Tuesday.   I am feeling pretty good thanks - just get a bit tired and there was some nausea in that first week and the usual neuropathy.  So far my hair has hung on!! Hoping it will continue to!  Just bought myself a new computer and having some "fun" with that!   Got extended warranty on it too!!  Feeling positive!  At the Oncologists suggestion we have cancelled our trip to Canada in September so will do some little trips within Australia this year.  Yes it seems with some of us the CA125 isn't a good indicator - mine does seem to be so hanging out for that next reading to see what changes the Topotecan has made!  All the best with getting on top of that pain.

Julie x

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