New trial

Suekub said:

The latest!

The drama in my life continues! On Saturday i was admitted to hospital through emergency as I had fallen several times without warning, no dizziness or seizures and all very mysterious and has everyone scratching their heads. I also have pain across the tops of the hips which was very bad on Saturday. The muscles across my lower back and hip area appear to be very weak making me unable to get up from asitting position without difficulty. I was concerned that spine met was growing and causing the problem. have had spine MRI which showed no change since previous CTs and MRIs. Brain MRI was 2 weeks prior due to my "wobbly leg" syndrome and this was also normal.

my oncologist diesn't quite know what to make of it, referral to a top neurologist now and have undergone nerve conduction study and EMG. Results not yet conclusive and will be having a further MRI of leg muscles and possible muscle biopsy. I am now at home after 4 days of hospitalisation. Nobody knows wherher this problem is a side effect of the study drug I am but am very worried that I will be removed from another trial which then limits treatment options. I am very cautios walking etc but still have the pain although not quite as bad. 

Just hope they can diagnose the new problem and treat it so I can continue clinical trial.

 

Hi Sue, 

How are you doing, better I hope? Have you arranged you MRI appointment yet? I have been thinking and praying for you daily. With all your tests so far showing stability, this surely has to be side effects  from the drug, hoping these can be resolved and you continue with the trial.

Take care!

Djinnie xx

Suekub said:

Thanks all

Spoke with oncologist on Friday who advises to re-start trial as it appears this is probably the only way they can tell that the "falling syndrome" is a side effect. Not sure if they still need a MRI, will have a further talk with onc who has discussed findings at length with neurologist. So far, so good. Have a full day at the hospital tomorrow for usual hourly bloods etc and ECG and echo today. On the upside oncologist has told me if if this trial fails she has another one that may be appropriate.

stay tuned!

Sue

PS how are doing Djinnie?

Hey Sue, well at last things are proceeding in a positive way! I am glad to hear there's a possibility you can stay within the current trial but also that there may be another in the offing. All the best with your tests!

I am still suffering a lot of side effects unfortunately. The worst being the constant coughing with episodes of choking, the choking is the most frightening because I can't swallow in order to stop it. It literally feels like I am being strangled. Fortunately for me so far I have recovered, obviously! but it is difficult. My throat always feel like I have a large furrball stuck down it, or maybe I have just inadvertently swallowed the cat, lol!

Take care Sue, let us know how you get on. You are always in my thoughts:)

Djinnie xx

Hi Sue,

I started the ASLAN002 trial in December last year & will get results in next few weeks. You haven't posted for a while & I was wondering how you were going.

Cheers,

Garry