Hi,I've just been told my ca125 levels are high, doctors said it can be a ovarian cyst, ovarian cancer or could just be because I've got RA, have and other ladies had this and it's just been down to arthritis???
Hi Debbie
Who gave you the result ? Did they tell you the number of your level. My MIL had ovarian cancer but if number stayed below 47(I think) then no active treatment.
I hope the person who gave you the result was qualified to offer that opinion.
I would ask for clarification promptly as I am sure your really worried X
Hi, it was my gp, gave me the results today.. They at at 45... I'd never heard of this test before so just sat there dumbstruck as he told me
I kept getting cysts in my womb and had to have hysterectomy as they could have turned cancerous. I was told it could have been caused by my cancer drug tamoxifen but I think RA drugs have a lot to answer for to.
They do, I'm on methotrexate and gollimad, (Simponi), I've been dreading the day they tell me I might have got cancer because of these drugs, but without the drugs o can't even move
I know. But that's it ... No choice. I was offered biological drugs for my RA and some of the drugs offered warned that people who had had cancer should not use them. I think that speaks volumes. I know that in my desperation to ease my pain I am putting myself at risk with other nasty illnesses. Its still early days with all these drugs and we don't know long term dangers.
I'm just about to be taken off gollimad because it's affected my liver, I'm just waiting to try a new biological, but it's so scary putting all these drugs in your body... X
You must be in the States as I have never heard of gollimad! Do you know methotrexate? That's what I am on and liver function needs careful monitoring.
No I'm in the UK, I've been on it 2 years. U have to go through a screening process to get on biological drugs, and tried things like methotrexate, I take methotrexate as well, but most the drugs I tried never worked... They think it's the methotrexate that's ruining my liver
Yes I am on bio. Rituximab. Where are you in UK? That is a new name of a drug to me. I am still on methotrexate maximum dose injections but it doesn't work so I got bios. It was tough waiting for funding decision.
Here lies the problem, whatever we do we are screwed. I'm on methotrexate plus remacade and without the remacade I can't move. So do we go for quality life for now and maybe get cancer down the road or do we suffer excruciating pain and live longer? I don't know what the answer is. I'm fortunate that the metho doesn't have side effects for me like others but still, you know if is hurting your liver.
Debbie I would tai what your GP says with a pinch of salt, I've been having some side effects from cimzia and my GP (albeit a locum) happy told me results of my ecg meant I had heart failure only to be seen a few days later by a cardiologist who said my heart was fine and locum was an idiot.
I would ring the RA's secretary and ask for an urgent follow up appointment. I am presuming that your screen for the CA125 marker because whatever drug your on increases your risk of developing ovarian cancer - I'm some ways that's good because it's considered a silent cancer because by the time you have symptoms it's usually too late for effective treatment - at least being screened would give you a much greater chance of fighting it if you were to ever develop it.
Deciding to take all these new biological drugs is so hard because as someone else said we know so little about the long term price we are paying for short term pain relief. I was offered one biological that carried a very high cancer risk (can't remember the name) and I decided against taking that one having watched my sister go through stage 4 hodgkins Lymphoma and my dad through pancreatic cancer.
Please do let us know how you get on.
X Siobhan X
Yes I have had this discussion with a lady who has been on rituximab for 4 years and was advising me about it. She said it had given her her life back and she can enjoy her grandchildren. She said she lives for today and to hell with the future. I think we are of the same mind. X
I'm just in the process of being taken of gollimad... My specialist wanted me to try another one which came with a side effect that affects the brain and kills you... So it was a big no to that one.. To be honest I was in so much pain that I was happy to get biological because my nurse said it was hard getting accepted due to the price .. I knew about side effects but never gave it a thought that I might get the worst one... I'm hoping it's nothing serious, I'm hoping it a cyst which was one of the two options he gave me, but after coming home and my sister doing lots of research. It says there are about 5 things that can cause ac 125 to rise, so I'm hopeful..
I will do, thankyou x
I felt the same way, worry about today, not what's in the future, I always said the benefits outway everything else... Until now...but hopefully it's not cancer and it's something that's easy fixed
I am very sure you are OK. Don't worry. I know it hard not to but the odds are more likely to be that its something less scary. X
That's the thing, after seeing my nana die from arthritis when I was 15, I swore when I was 26 and got it that I would take anything not to land up like she was... Couldn't walk for nearly 15 years, she was all twisted and deformed.... But it's surprising how little information I've been given about all these drugs in the past.. Just normally get given a leaflet and sent home to read it... And they don't tell you very much really
Thanks, I hope your right, my sister thinks the same. X
I found this info on CA125...
Ca 125 is elevated in ovarian cancer and in
some other cancers in the abdomen. But other, non-cancerous conditions can
elevate the Ca125 value, such as inflammatory conditions of the abdomen
(diverticulitis, peritonitis, pelvic inflammatory disease, inflammatory bowel
disease tuberculosis and pancreatitis), liver disease, recent surgery, and
benign gynecologic conditions such as fibroids, endometriosis, ectopic
pregnancy, or a ruptured cyst.
in some situations, Ca 125 is even used to
monitor the effects of treatment for benign conditions such as endometriosis.
these other diagnoses must be considered in the interpretation of an elevated CA125.
How high were your levels? I found this also..... Women with ovarian cancer often have levels measured in hundreds
and even thousands of units. Hope this helps.. Best wishes.