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New trial

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

Good morning everyone. I haven't updated for a while. There has been a lot going on (unfortunately) - I have been officially removed from the Meteor trial due to some progression and early pneumonitis (a known side effect of everolimus). I ceased all treatment around 28 July. I am now being screened for a new study which is a Phase 1 C met inhibitor and not specifically focused on kidney cancer. Due to lack of options I have decided to give it a go and hope that this might slow things down a little (lot???). For those interested it is for a drug presently named ASLAN002 (not sure I understand what it all means when googled) but at this point I don't think I have much to lose.

Intensive screening starts this week with opthalmologist appointment, followed by ECG and echocardiogram and CT. Then this will be followed with a 24 - 48 holter ECG monitor. Subject to everything being OK then a 9 hour stint at the hospital after 1st dose (tablet form) with blood tests and obs every hour - needless to say there is risk of heart damage hence the heavy duty checking and re-checking.

I am hoping that as neither pazopanib and everolimus didn't do anything for me that a complete change may be timely. If this one doesn't help then it is planned to give sutent a try.

Fingers and toes crossed!

Sue

 

 

Cate1273's picture
Cate1273
Posts: 35
Joined: Feb 2014

Sue,

So sorry for this. Stay strong. Hoping and praying for the best in this new trial. Lots of Hugs!!

Cate

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Hope this one works! Thinking of your daughter too . My daughter is doing senior school exams too and she has been getting really anxious since Greg got sick even though he is NVED at the moment. Take care Melissa .

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Sue, from what I could find, this may be a very good trial indeed..!  Hope it works for you..!

Here is a link to the trial info..  https://www.smartpatients.com/trials/NCT01721148

Good Luck..!!!!

Ron

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Sue!

Thinking about you with my fingers and toes crossed! I like what Ron had to say!

Hugs

Jojo

angec's picture
angec
Posts: 924
Joined: Mar 2012

Hi Sue, hope things work out with the new drug. I was wondering, did they ever figure out what type of RCC you had? I remember you had said you weren't sure. Did you send your cells out to get a second opinion? Have they ever mentioned affinitor? Praying all works out for you!  XXOO

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

i was diagnosed clear cell (think you might be getting me mixed up with someone else) and there has never been any uncertainty about that. I was on afinitor until recently - was randomaised to this arm on the Meteor trial. Unfortunately, neither Votrient nor Afinitor worked for me.

hopefully, this phase 1 study might be worthwhile.

Sue

 

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

Sorry to hear that things have not gone well for you so far. Hoping that this new Clinical Trial will work for you. I am also trying to be accepted into a Phase 1 Clinical trial. I meet with the doctors on Thursday so I can really relate to what you are going through. Best of luck - BDS     

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Good luck to you as well, BDS!!

Hugs

Jojo

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

there are more and more options. Sorry that it has been so difficult. Fortunately options remain. I am always so impressed with how tough everyone is. The key has always been hanging in there until the right treatments present themselves. I have faith in you Sue. I hope this is the one. Sending all my energy your way.

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

Good luck to you BDS. I had yet another scan yesterday (baseline for this trial), no results yet but am nervous about growth since treatment stopped.

I will be fitted with a holter monitor on Monday For 48 hours and then a big day Tuesday where I will be at the hospital from 7:45am until about 5pm for 1st dose of drug and watch and wait for any side effects with hourly blood test. Will be loaded up with laptop and heaps of movies, TV series etc to fill the time.

Thanks everyone for your thoughts and I gratefully accept all of your energy/finger crossing etc

Sue

 

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

Well, I have been on this Phase 1 study for 9 days and side effects have well and truly kicked in. As it is a phase 1 study there is no list of known side effects so everything is a surprise and not always pleasant. Apart from feeling tired all the time, the very unpleasant bitter taste in my mouth which makes eating unenjoyable, have some issues with a weird feeling of being drunk. That is the only way I can describe it, feel like I am walking awkwardly (I have been told I'm not), bit foggy headed. A friend of mine would say I have my "wobbly boots" on. It appears there may have been one other person to report this. I am hoping this feeling is not permanent as I would seriously have to consider removing myself from the study but would at least wait until after 1st screen after 8 weeks to see if the drug is worth the unpleasant side effects.

In my weekly review they ordered a brain MRI to ensure there was nothing else that could cause this odd feeling. MRI was clear which was encouraging. Review next Tuesday.

Sue

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hey Sue, I am glad to hear the MRI was normal, that is good news. It's hard getting on to these treatments, you never know what sort of side effects they are going to throw up. I spoke to Glaxo about some of the side effects of Votrient, and they told me they are still collecting data. You may remember my nails turned very black and it wasn't on the list. Fortunately they have recently started to improve. I also felt as if I was three sheets to the wind, but it cleared after about a month. Feeling like you are drunk is difficult, but harder for you because you have to work don't you?

I am praying that your body aclimatises quickly and that this trial works 100% for you Sue. I admire you, you stay positive and remain focused, it's time for a major break through. I'm routing for you big time:)

 

Djinnie xx

angec's picture
angec
Posts: 924
Joined: Mar 2012

Hi Sue, sorry for the confusion, i thought i saw you post on Smart Patients at one point that they were retesting your tumor. Sorry about that! Anyhoo, how did the scan results come out this time?  Are you still going through those rough symptoms with the new trial? I hope it eased up a bit.  Did they take the other person off the trial that had reported these issues?  Hate feeling drunk without sipping the tap off the beer!  ;( Hoping you feel better and these issues subside!  Keep your chin up! Any chance of you getting the pd-l?

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

Hi Angec

Still having side effects but seem to be becoming my "new normal". the wobbly legs are bad enough but the thing I have the most problem with is the taste of food - everything tastes awful. I add extra seasoning, pepper, chilli ect but doesn't help.  The only way I can compare it to anything is that my mouth feels like I have just brushed my teeth with strong toothpaste. We all, I think, know that nothing tastes good after immediately brushing. Apparently everyone on this drug reports similar experience. I think my tastebuds are "fried"!

I love food so is a real trial for me, sadly. Lol.

Firgit to ask about the other patient who was experiencing similar effects but can only assume he was not removed from the trial as I am still on it.

anyway, hoping for good results cone scan time.

Sue

PS if anyone has any suggestions about the mouth issue woukd be happy to hear them!

 

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

Hi Sue, 

I am glad to hear you are still on the trial and coping better with the drug. I hope the the jelly legs improve as your body aclimatises to the drug. I have suffered with the bad taste as well, rather like rotten eggs, it doesn't help that is suffer from nausea anyway. I started taking zinc as it's recommended for such issues, usually for metallic tastes. My Oncologist recommends bicarbonate of soda. I wash my mouth with it morning and night anyway, but she suggested I also use it before I eat. It does seem to help, I don't know if that may help you. Bicarb is so cheap if it doesn't help you won't have lost much. The Bicarb has also helped with my mouth ulcers and reduces a lot of the acidity which I suffer from.

When is your next scan due? 

Take care:)

 

Djinnie xx

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I am so excited for you. And just think, all the great treatments we have now for RCC were once Phase 1 clinical trials!!! Hope you have lots of great tv lined up. 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

It sounds like great progress, Sue! Hang in there! I am so happy for you!

Hugs

Jojo

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

is over rated. More important to do well in your treatment. I hope you can tolerate everything and improve.

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

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.

 

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

So sorry Sue. That sounds like you have had a horrible time! Hope they can figure out whats going on. Take care Melissa

GSRon's picture
GSRon
Posts: 1304
Joined: Jan 2013

Sue, hang in there..!  The reward may well be worth the short term misery.. hope so..!  I did more research, this drug has some awesome potential..! And I found that it is being use for solid tumors. 

http://www.aslanpharma.com/pipeline.html

http://clinicaltrials.gov/show/NCT01721148

http://cancerdiscovery.aacrjournals.org/content/3/7/751/F4.expansion.html

Notice this is a Ron Kinase Inhibitor.  And so this Ron hopes that Ron gets inhibited and you get great results..!

I suspect your symptoms are indeed side effects.. this means you need to be careful about falling for sure.  Hopefully your body will respond to the side effects.  And hope that the drug works..!

We are all pulling for you..!

Ron  

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

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's picture
Suekub
Posts: 137
Joined: Apr 2013

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?

Djinnie's picture
Djinnie
Posts: 945
Joined: Apr 2013

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

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

Hi Sue,

Just wanted to chime in and say I've read this thread and I'm sending good wishes/thoughts/prayers your way. I hope this new medication is effective despite the pain-in-the-*** side effects.

Best to you,

Todd

Suekub's picture
Suekub
Posts: 137
Joined: Apr 2013

Well, here I am sitting in a chair having the usual hourly blood draw. Re-started the drug and so far, so good. Everyone is still mystified by what happened and the drug company is very interested in me! Nice to be the centre of attention, not!

If the mystery leg weakness appears again I will be immediately off the trial, otherwise if all continues OK will be scanned in 4 weeks where we will see if the drug is having any effect at all.

Djinnie, sorry to hear about your issues and hope they are resolved sooner rather than later.

Todd, thanks for your best wishes.

Sue

 

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Hi Sue,

We are thinking about you and hoping that the mystery leg issue stays away. Very strange, isn't it? I hope your side effects are few and not too bothersome. Everyone who is on the trial drugs are very brave and strong. Wishing you well and great health!

Hugs

Jojo

Garryb
Posts: 5
Joined: Dec 2014

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

 

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