Clinical Trial

2

Comments

  • LisaPizza
    LisaPizza Member Posts: 358 Member
    #22
    Lulu7582 said:

    Thanks for the info

    I have book marked OncLive ...thanks for the information. Yes it is exciting to see the advances in treatment.

    The trial I am joining is an experimental oral immunotherapy drug with the Taxol. I had a complete response last time when I was on Taxol and Carbo so hoping it will be successful this time with the new oral immunotherapy drug. Starting next week if my labs are ok this week. The schedule will be oral drug for 28 days and low dose taxol day 1, day 8 and day 15, then repeat. So time will tell. 

    INCB 01158-203 A Phase 1/2 Study to Evaluate the Safety, Tolerability, and Efficacy of INCB001158 in Combination with Chemotherapy, in Subjects with Advanced or Metastatic Solid Tumors

    This is the trial. 

    Exciting :) if that's the

    Exciting :) if that's the right word, lol, hope you know what I mean 

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #23
    Lulu7582 said:

    Thanks for the info

    I have book marked OncLive ...thanks for the information. Yes it is exciting to see the advances in treatment.

    The trial I am joining is an experimental oral immunotherapy drug with the Taxol. I had a complete response last time when I was on Taxol and Carbo so hoping it will be successful this time with the new oral immunotherapy drug. Starting next week if my labs are ok this week. The schedule will be oral drug for 28 days and low dose taxol day 1, day 8 and day 15, then repeat. So time will tell. 

    INCB 01158-203 A Phase 1/2 Study to Evaluate the Safety, Tolerability, and Efficacy of INCB001158 in Combination with Chemotherapy, in Subjects with Advanced or Metastatic Solid Tumors

    This is the trial. 

    Great. Hope all goes well and

    Great. Hope all goes well and you kick this beast quickly!

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    #24
    DM_K said:

    I will be following right

    I will be following right with you Lulu.  I will know my treatment plan for clinical trials (if I qualify) on Thursday and will update as soon as I know.

    Happy to hear about the hair!

    Did they decide on a trial for you

    DM_K did the doc find a trial for you??? Check out and see if the trial I am entering is at your facility?? Will be interested to hear what your doctor's decide. xo

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    #25
    LisaPizza said:

    Exciting :) if that's the

    Exciting :) if that's the right word, lol, hope you know what I mean 

    Lol

    Yes I know what you mean. Really hoping this immunotherapy oral drug kills the little beasts and stops them in their tracks. I know the taxol did it's job last time but  praying the side effects are going to be doable.... next week we will see how it goes.

    Looks like long days this month (8 hours in the infusion center) because they will be drawing bloods to figure out the pharmacokinetics etc. etc. oh joy!! Lots of Spotify because I usually can't concentrate on reading ...but liked the idea of funny movies so will download some and see if I can watch them later on when the benadryl wears off. 

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    #26
    Delay

    Entering the trial has been delayed because my hemoglobin is 7.2 (side effect of the lovely everolimus). Doc wants me to be above 9 before entering the trial so just had a blood transfusion yesterday. Today I am feeling so much better. Didn't realize how crappy I was feeling prior to the transfusion. I suppose we just get used to the feeling and it becomes the norm. Anyway it has perked me up and feeling much better. Tentatively will start the trial at the end of next week. Say some prayers for me. Really hope this kicks my cancer in the butt!! 

    Have a great weekend everyone! xo

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    #27
    Lulu7582 said:

    Delay

    Entering the trial has been delayed because my hemoglobin is 7.2 (side effect of the lovely everolimus). Doc wants me to be above 9 before entering the trial so just had a blood transfusion yesterday. Today I am feeling so much better. Didn't realize how crappy I was feeling prior to the transfusion. I suppose we just get used to the feeling and it becomes the norm. Anyway it has perked me up and feeling much better. Tentatively will start the trial at the end of next week. Say some prayers for me. Really hope this kicks my cancer in the butt!! 

    Have a great weekend everyone! xo

    You got it

    I will keep yo in my thoughts. Good luck. 

  • DM_K
    DM_K Member Posts: 51
    #28
    Lulu7582 said:

    Did they decide on a trial for you

    DM_K did the doc find a trial for you??? Check out and see if the trial I am entering is at your facility?? Will be interested to hear what your doctor's decide. xo

    Hi Lulu.  I'm still waiting

    Hi Lulu.  I'm still waiting to know for certain which clinical trial I will be going in.  Apparently my doc is having radiology check and recheck film because I need a lesion 1 cm bigger for the study he wants me to go into.  During the waiting, the last 2 weeks to be more specific, I had 2 paracentesis done with 2 liters of fluid (first time it was a creamy color, second time light green) being removed each time, fortunately after the last tap it's not filling back up at the same rate as after the first one.  My pain has increased and now I'm seeing a pain doc, he increased my narco and then he will reevaluate my pain level in a week.

    Last Tuesday I saw my PCP who I haven't seen in a year, I needed to catch her up with everything.  She ordered a TSH, I think because my skin is very dry, and lo and behold the result was almost 3 times higher than the high normal range.  Between the fluid in the abdomen, the edema on my upper thighs, and the hypothyroidism no wonder I am packing on the weight.

    Today I had another CT scan of my abdomen, pelvis, and chest.  Doc also wanted my brain scanned as well because I saw waves in my peripheral vision 3 times. 

    Sorry to hear your clinical trial was put on hold, the waiting is the worst part.

     

  • SF73
    SF73 Member Posts: 317 Member
    #29
    Lulu7582 said:

    Delay

    Entering the trial has been delayed because my hemoglobin is 7.2 (side effect of the lovely everolimus). Doc wants me to be above 9 before entering the trial so just had a blood transfusion yesterday. Today I am feeling so much better. Didn't realize how crappy I was feeling prior to the transfusion. I suppose we just get used to the feeling and it becomes the norm. Anyway it has perked me up and feeling much better. Tentatively will start the trial at the end of next week. Say some prayers for me. Really hope this kicks my cancer in the butt!! 

    Have a great weekend everyone! xo

    I will be thinking of you

    I will be thinking of you Lulu. Wishing you a mention in the newspaper worthy success!

  • SF73
    SF73 Member Posts: 317 Member
    #30
    DM_K said:

    Hi Lulu.  I'm still waiting

    Hi Lulu.  I'm still waiting to know for certain which clinical trial I will be going in.  Apparently my doc is having radiology check and recheck film because I need a lesion 1 cm bigger for the study he wants me to go into.  During the waiting, the last 2 weeks to be more specific, I had 2 paracentesis done with 2 liters of fluid (first time it was a creamy color, second time light green) being removed each time, fortunately after the last tap it's not filling back up at the same rate as after the first one.  My pain has increased and now I'm seeing a pain doc, he increased my narco and then he will reevaluate my pain level in a week.

    Last Tuesday I saw my PCP who I haven't seen in a year, I needed to catch her up with everything.  She ordered a TSH, I think because my skin is very dry, and lo and behold the result was almost 3 times higher than the high normal range.  Between the fluid in the abdomen, the edema on my upper thighs, and the hypothyroidism no wonder I am packing on the weight.

    Today I had another CT scan of my abdomen, pelvis, and chest.  Doc also wanted my brain scanned as well because I saw waves in my peripheral vision 3 times. 

    Sorry to hear your clinical trial was put on hold, the waiting is the worst part.

     

    Wishing you all the best DmK.

    Wishing you all the best DmK. Such a good idea to see your PCP. Sometimes we focus on cancer alone and neglect all other health issues. It may be possible to help our bodies fight with cancer better if we address those other unrelated health issues. With health no two issues are unrelated anyways. 

  • DM_K
    DM_K Member Posts: 51
    #31
    SF73 said:

    Wishing you all the best DmK.

    Wishing you all the best DmK. Such a good idea to see your PCP. Sometimes we focus on cancer alone and neglect all other health issues. It may be possible to help our bodies fight with cancer better if we address those other unrelated health issues. With health no two issues are unrelated anyways. 

    So true SF.  Hopefully the

    So true SF.  Hopefully the elevated TSH is just related to hypothyroidism and not metastic thyroid cancer.  I did tell my gyn onc about a month ago that my neck hurt so bad when I had a deep belly laugh that I had to stop laughing.  My gyn onc replied, thinking he was funny, "well don't laugh."  We'll see what happens.

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #32
    I've got my fingers crossed

    I've got my fingers crossed this works for you!! So many new and exciting treatments are coming out lately. Please keep us updated on how this works!!

    Love,

    Eldri

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    #33
    Progress

    Ok so I am day 5 right now and feeling pretty good. No appetite but nausea is ok. Ended up taking some antiemetics for the first few days but I was already nauseated before we even started the trial. I think the combination of low Hemoblobin and the cancer having free reign as the previous drugs wore off didn't help. 

    Bone pain tolerable and have cut back on the NSAIDS I was eating....now down to only 1 in the am so that's an improvement!!! Went for a short walk , not my usual walk but hey it's a start!! Anyway feeling optimisitic and praying that each week the little beasts are getting attacked and killed!! 

    L xo

  • zsazsa1
    zsazsa1 Member Posts: 568 Member
    #34
    Lulu, that's great that you

    Lulu, that's great that you're feeling a bit better.  Glad you were able to get outside.  Hoping it's beautiful spring weather where you are.

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    edited April 2019 #35
    Lulu, glad to hear you were

    Lulu, glad to hear you were able to walk a bit today. That and loads of rest will help you so much!

     

    Love and Hugs,

    Cindi

  • Tamlen
    Tamlen Member Posts: 343 Member
    #36
    Walks are so good

    Lulu, I'm glad you were able to get outside. There's nothing that quite replaces time outside for feeding the soul. I was just reading some research that talked about the value of time outdoors for physical and mental health, something we pretty much knew already!

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #37
    I'm glad you're feeling

    I'm glad you're feeling better and the trial is going well.

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    #38
    Thank you Ladies

    Your comments lift my spirit!! Thank you!! So very thankful for all of you.

    Just back from my doc appt ..... all is well. The unions here are having a strike day and I needed labs drawn today but thank goodness for a few folk who decided to work anyway. I thanked them for coming to work and not effecting patient care. I believe in unions but glad someone was there to draw the labs they need before Friday's infusion. 

    It is blue skies and sunshine outside so getting ready to go for another walk and yes it does feed the soul to be in the sunshine.  xoxo

    PS for all you English majors I apologize if I used the wrong effect vs affect..... not my strong point!! LOL 

  • Universe
    Universe Member Posts: 7
    #39
    Lulu7582 said:

    Thank you Ladies

    Your comments lift my spirit!! Thank you!! So very thankful for all of you.

    Just back from my doc appt ..... all is well. The unions here are having a strike day and I needed labs drawn today but thank goodness for a few folk who decided to work anyway. I thanked them for coming to work and not effecting patient care. I believe in unions but glad someone was there to draw the labs they need before Friday's infusion. 

    It is blue skies and sunshine outside so getting ready to go for another walk and yes it does feed the soul to be in the sunshine.  xoxo

    PS for all you English majors I apologize if I used the wrong effect vs affect..... not my strong point!! LOL 

    Wishing you best Lulu. May

    Wishing you best Lulu. May this trial work wonders.

  • BluebirdOne
    BluebirdOne Member Posts: 656 Member
    #40
    Lulu7582 said:

    Thank you Ladies

    Your comments lift my spirit!! Thank you!! So very thankful for all of you.

    Just back from my doc appt ..... all is well. The unions here are having a strike day and I needed labs drawn today but thank goodness for a few folk who decided to work anyway. I thanked them for coming to work and not effecting patient care. I believe in unions but glad someone was there to draw the labs they need before Friday's infusion. 

    It is blue skies and sunshine outside so getting ready to go for another walk and yes it does feed the soul to be in the sunshine.  xoxo

    PS for all you English majors I apologize if I used the wrong effect vs affect..... not my strong point!! LOL 

    Good luck, LuLu!

    We are rooting for the best outcome!  Wish I could go outside, it is snowing like crazy and they are talking blizzard warnings. 

    xxoo

    Denise 

  • Lulu7582
    Lulu7582 Member Posts: 112 Member
    #41
    BluebirdOne said:

    Good luck, LuLu!

    We are rooting for the best outcome!  Wish I could go outside, it is snowing like crazy and they are talking blizzard warnings. 

    xxoo

    Denise 

    Snow

    Oh my yes I have been hearing about the blizzard you guys are dealing with. It is pretty when it snows but a pain when you have to work and carry on life in it. We lived 6 years in South Dakota....definitely had my taste of living in the snow. Stay safe and warm. xoxo

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