Ovarian cancer

A support group for anyone affected by ovarian cancer to come together, share experiences, and ask questions.

Metatastic ovarian cancer and myositis

CHK
Posted by

I was diagnosed in 2016 with metastatic ovarian cancer (lymph nodes) and cervical cancer which I was treated for with chemo (carboplatin & Taxol) and radiotherapy and bracatherapy respectively . Given the all clear from both after 10 months of treatment ,then the ovarian cancer returned in March 2018 ..another 6 months of chemo this time with carboplatin and  caelyx ...this made me v ill , xteme weakness etc. After legs swelled up and ended up in a wheelchair. Docs couldn't understand what was causing this but thought it was the caelyx so came off that. started another round this time with just carbo. After about 6 months and lots of umming and ahhing, they decided I had myositis - inflammation of the muscles, typified with huge ck levels (4000!) . I went on an 8 month program of high level steroids (predisolone) which brought ck down to 200 but am still in a wheelchair and life quality v low. Have carers twice a day etc. 

The doctors say they cannot treat the myositis with next choice of medicine (methotrexate) as it would expedite the cancer which is still active. They waited 4 months after I finished chemo (and was told nothing more they could do) before putting me on letrozole which has a 20% chance of helping.

Bit of a catch 22 as treatment for the myositis could expedite the cancer ,and to really help cure the myositis they need to get rid of the underlying cause - the cancer. And they cant do any more chemo etc as my body won't take it now.

I'm 75 and until 2016 was a very fit ,active and healthy . Haven't smoked or drank. Feeling a bit like I've been put out to grass ..

Is anyone going through a similar thing whereby they have something else going on at same time as their cancer ans it's an issue for treatment options? Would love to hear from you.

Thanks so much 

CHK 

CHK 
latchbrook
Posted by

Hi  and a very warm welcome to the online community

I'm sorry to read how much you've gone through and are still going through. 

I haven't had the same experience as you but noticed that your post had gone unanswered. This may be because your set of circumstances might be quite unique or just that the right person hasn't seen your post yet.

While you're waiting to see if you get replies you could use the search bar in this group to look for older posts written by people with a similar experience to yourself.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

CHK
Posted by

Thank you for the info .am new and not very savi with tech stuff !,but will try to do what you suggest thank you 

CHK