New trial

Suekub
Suekub Member Posts: 137

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

 

 

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Comments

  • Cate1273
    Cate1273 Member Posts: 35
    New trial

    Sue,

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

    Cate

  • Phredswife
    Phredswife Member Posts: 162
    Good luck Sue!

    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
    GSRon Member Posts: 1,303 Member
    Sue, from what I could find,

    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
    Jojo61 Member Posts: 1,309 Member
    Hi Sue!
    Thinking about you

    Hi Sue!

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

    Hugs

    Jojo

  • angec
    angec Member Posts: 924 Member
    Hi Sue, hope things work out

    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
    Suekub Member Posts: 137
    angec said:

    Hi Sue, hope things work out

    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

    Thanks

    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
    BDS Member Posts: 172
    New Trial

    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
    Jojo61 Member Posts: 1,309 Member
    BDS said:

    New Trial

    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     

    Good luck to you as well,

    Good luck to you as well, BDS!!

    Hugs

    Jojo

  • foxhd
    foxhd Member Posts: 3,181 Member
    Jojo61 said:

    Good luck to you as well,

    Good luck to you as well, BDS!!

    Hugs

    Jojo

    Thankful that

    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
    Suekub Member Posts: 137
    foxhd said:

    Thankful that

    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.

    Thanks all

    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

     

  • sblairc
    sblairc Member Posts: 585 Member
    So excited for you!

    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. 

  • Suekub
    Suekub Member Posts: 137
    Suekub said:

    Thanks all

    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

     

    9 days in!

    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
    Djinnie Member Posts: 945
    Suekub said:

    9 days in!

    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

    Nine days and counting!

    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
    angec Member Posts: 924 Member
    Suekub said:

    9 days in!

    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

    Hi Sue, sorry for the

    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
    Suekub Member Posts: 137
    angec said:

    Hi Sue, sorry for the

    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?

    Thank you

    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
    Djinnie Member Posts: 945
    Suekub said:

    Thank you

    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!

     

    Hoping you have great results too!

    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

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    sblairc said:

    So excited for you!

    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. 

    It sounds like great

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

    Hugs

    Jojo

  • foxhd
    foxhd Member Posts: 3,181 Member
    Jojo61 said:

    It sounds like great

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

    Hugs

    Jojo

    good tasting food

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

  • Suekub
    Suekub Member Posts: 137
    foxhd said:

    good tasting food

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

    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.

     

  • Phredswife
    Phredswife Member Posts: 162
    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.

     

    So sorry Sue. That sounds

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