Clinical Trial 09-276

kuastoi
kuastoi Member Posts: 63
in Colorectal Cancer #1
Anyone else on this board enrolled in this trial through Mass General or Dana Farber? It is a trial of 2 drugs, av-951 is like avastin and acts as selective VEGFR1, 2 and 3 kinase inhibitor blocking new blood vessel formation. RAD-001 is everolimus a mTOR inhibitor and has been approved for kidney cancer.

Thought I'd see if anyone else is out there - only issue I have been having is controlling my BP, much like avastin.

Feel like my brain is bouncing around my skull as I've been running 140-150 over 90-100. Just added another BP drug today so I am hoping for better control and sleep soon.

Thanks
Tom

Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #2
    can't help you Tom feel so sorry!
    hugs!
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #3
    pepebcn said:

    can't help you Tom feel so sorry!
    hugs!

    Pray for better health in your quest.......
    Hope your trial does indeed work out for you.....Hopes for all to be well.......buzz
  • kuastoi
    kuastoi Member Posts: 63
    #4
    Buzzard said:

    Pray for better health in your quest.......
    Hope your trial does indeed work out for you.....Hopes for all to be well.......buzz

    Thanks,
    I knew it was a long shot - only 40 or so in the trial. I appreciate your goodwill and thoughts, thinking and praying hard these days..

    Tom
  • John23
    John23 Member Posts: 2,122 Member
    #5
    Tom -

    Re:
    "I've been running 140-150 over 90-100"

    For me, that's normal. In fact, most of my friends that refuse
    to play the "blood pressure game", have had similar BP readings,
    and are a lot older and healthier than I am.

    High blood pressure is a symptom of an underlying problem.
    Taking meds to lower the pressure doesn't remove the problem,
    it only takes away the symptom. The real problem will only
    rear it's ugly head again in other, more serious ways.

    You will find that something so simple, as taking full, deep breaths
    will bring the high BP down. Breath deeply before they test you
    and see what happens.

    I found it amusing, that "new studies have shown" that the present
    BP numbers are too high, and they are in the process of lowering
    the figures about ten points. Great! That should put a few more
    million individuals on BP meds!

    Oh well... rant over. Just be careful of those BP meds, they will
    eventually cause you to be on many, many other meds, all in an
    effort to "cure" the side effects from the BP meds.

    Be well !

    John
  • kuastoi
    kuastoi Member Posts: 63
    #6
    John23 said:

    Tom -

    Re:
    "I've been running 140-150 over 90-100"

    For me, that's normal. In fact, most of my friends that refuse
    to play the "blood pressure game", have had similar BP readings,
    and are a lot older and healthier than I am.

    High blood pressure is a symptom of an underlying problem.
    Taking meds to lower the pressure doesn't remove the problem,
    it only takes away the symptom. The real problem will only
    rear it's ugly head again in other, more serious ways.

    You will find that something so simple, as taking full, deep breaths
    will bring the high BP down. Breath deeply before they test you
    and see what happens.

    I found it amusing, that "new studies have shown" that the present
    BP numbers are too high, and they are in the process of lowering
    the figures about ten points. Great! That should put a few more
    million individuals on BP meds!

    Oh well... rant over. Just be careful of those BP meds, they will
    eventually cause you to be on many, many other meds, all in an
    effort to "cure" the side effects from the BP meds.

    Be well !

    John

    Was sustained too high and too symptomatic
    My BP usually runs in the 110-120/70=80 range and I have always been able to control it through relaxation, imagery, concentrating on my breathing etc. - but I have been really whacked out with the sustained higher pressures with headaches, difficulty concentrating, insomnia and general malaise. I hear you, but I had to go with the meds as it wasn't coming down with my usual approach and the quality of life was the pits.

    I know the meds treat the symptoms (the high BP) and not the cause - in this case the AV-951 which raises the BP much like avastin can. I had some elevation on avastin in the past - but could control it without meds. BP meds do lower the BP and reduce complications (MI, stroke, bleeds, heart failure etc.) - that is well proven, so I relented.

    Thanks
    Tom
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #7
    kuastoi said:

    Was sustained too high and too symptomatic
    My BP usually runs in the 110-120/70=80 range and I have always been able to control it through relaxation, imagery, concentrating on my breathing etc. - but I have been really whacked out with the sustained higher pressures with headaches, difficulty concentrating, insomnia and general malaise. I hear you, but I had to go with the meds as it wasn't coming down with my usual approach and the quality of life was the pits.

    I know the meds treat the symptoms (the high BP) and not the cause - in this case the AV-951 which raises the BP much like avastin can. I had some elevation on avastin in the past - but could control it without meds. BP meds do lower the BP and reduce complications (MI, stroke, bleeds, heart failure etc.) - that is well proven, so I relented.

    Thanks
    Tom

    thanks for sharing tom
    i hope the trial works for you.
    and your quality of life improves.
    they say beetroot juice lowers pb, same active ingredient from what i read as the meds.
    believe it or not.
    just passing on some news, i would never sugggest anything natural could help us.
    after all who else would support all those poor drug company executives.
    hugs,
    pete
  • ron50
    ron50 Member Posts: 1,723 Member
    #8
    Hi Tom
    I finished up on four bp meds.It wasn't particularly for blood pressure its just that pressure of 140/90 was pushing up to 3 grams of protein thru damaged kidney filters. My nephrologist wanted my bp down to around 120/70. I got to that then dropped down to 85/55 which made standing upright a little difficult, I take one combo bp/diuretic now and hang around 120/70 and only lose around .75 grams of protein. Hope your bp settles down a bit it sure helps when you can get some sleep.Ron.
  • kuastoi
    kuastoi Member Posts: 63
    #9
    ron50 said:

    Hi Tom
    I finished up on four bp meds.It wasn't particularly for blood pressure its just that pressure of 140/90 was pushing up to 3 grams of protein thru damaged kidney filters. My nephrologist wanted my bp down to around 120/70. I got to that then dropped down to 85/55 which made standing upright a little difficult, I take one combo bp/diuretic now and hang around 120/70 and only lose around .75 grams of protein. Hope your bp settles down a bit it sure helps when you can get some sleep.Ron.

    Thanks again
    Ah well, with beet juice - I'd probably just spill it on my best shirt....

    Not all drugs from the drug companies are bad, and even they are for too much profit - they still do some good.

    Anyway, anything we put into our bodies can act as a drug - it just if it has been marketed, supressed, testeed, ignored, clean with no side effects, or toxic etc...

    tom

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