Hiatus

Footstomper
Footstomper Member Posts: 1,237 Member
edited September 2016 in Kidney Cancer #1

Hi Chaps

If you dont know me and want to see my full story from when I was diagnosed May 1st 2013, check my about me page

The Problem

Ive been on Nivomulab (Optivo)since February of this year. No side effects, cancer (all metastatic tumours in my lungs) reduced by about 1/3

Right hip replacement to replace necrotic joint End of June

New scan showed continued reduction or stability in all my mets apart from one, which increased from 4 to 6.5 cm.

The Plan: The Abscopal Effect

Fox called it right when I had never heard of it. It means ab(away) scopal (from the aim) effect

In other words: Stay on the Nivo, and blast the main tumour with a lot of radiation. This causes the tumours they're not even aiming at to try to defend themselves and thus reaveal themselves to the antibodies reinforced by the Nivo.

All very new. The science journals only turned up one survey paper on this technique

What happened: 

After 7 days they called a halt to the radiation, because I'd already recieved 3 times the standard dose and anymore migh seriously harm me

The next day they stopped the Nivolumab for the same reason.

I'm a bit confused because surely the treatment has to be excessive to achieve the desired effect.

Symptoms

Fatigue is a biggy. I wake up to sleep

Chest hurts and feels exactly as if I have smoked 40 Camels

Smokers (productive) cough. No blood

When I cough the pain in my new hip LITERALLY throws me across the room

Dry mouth and throat

Feet swollen and itch/hurt like buggery

Next

See my onc on Tuesday, want to get back to Nivomulab as soon as possible

See Dr Radiation on Friday (He's brought this forward a week and I DONT KNOW WHY

FEELING A BUT DISPIRITED like the Docs have done a Bottle job on me.

 

 

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Comments

  • stub1969
    stub1969 Member Posts: 986 Member
    edited September 2016 #2
    Abscopal Effect

    That sounds kind of alien-like.  Weird!.  I sure hope it worked, Foots.  I'll be thinking about you and  praying Tuesday and Friday bring good news.  Just to lift up your spirits a little and bring a smile to your face--I know you're a former high school teacher.  We are celebrating Homecoming activities this week.  I know high school teachers feel this is the best academic week of the school year and the true impact of your hard work shines (wink).  Hope this brings back some memories.

    Stub

  • rhominator
    rhominator Member Posts: 233 Member
    #3
    Hang In There

    Hang in there Footstomper.  I feel for you.  Knowing the pain in advance of an oncoming cough must be horrible. Dang. :-(

    Thanks for the update though, this is new material for me.  I hope it works!!

    Not sure what a "bottle job" is, but it doesn't sound complimentary.  In the states, it could be "a woman who dyes her hair".  My wife calls the process "going to the bottle".

     

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #4
    rhominator said:

    Hang In There

    Hang in there Footstomper.  I feel for you.  Knowing the pain in advance of an oncoming cough must be horrible. Dang. :-(

    Thanks for the update though, this is new material for me.  I hope it works!!

    Not sure what a "bottle job" is, but it doesn't sound complimentary.  In the states, it could be "a woman who dyes her hair".  My wife calls the process "going to the bottle".

     

    Bottle job

    Sorry, a bit of cockney rhyming slang crept out there. Bottle and glass = class. Usually used when someone is found lacking in courage.*

    Of course there are other words that rhyme with glass, you have to work it out by context. It could have been worse:

    Aris = Aristotle = Bottle, bottle+glass = class

    *I was wrong. As I ache inside and out today, they probably made the right decision.

  • todd121
    todd121 Member Posts: 1,448 Member
    #5
    Pain

    I can't imagine pain that bad. Must make the feeling of an oncoming cough unpleasant!

    Sure hope the treatments continue to be productive. I'm not clear why they stopped the drug if you weren't having side effects? And which tumor did they radiate? One in the lungs?

    Always appreciate your posts even though I rarely chime in to discussions.

    Best to you,

    Todd

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #6
    Awww Foot, hope you can stomp

    Awww Foot, hope you can stomp out this effect soon and start to feel better, hon.

    Hope you get better news that your treatment is effective.

    I am heartbroken that you are suffering so.. sigh

    Sending you a heartfelt connection and HOPE for relief soon!

    Gentle hugs, Jan

  • APny
    APny Member Posts: 1,995 Member
    #7
    I'm so sorry about the

    I'm so sorry about the excruciating hip pain. It's not something you need on top of all the other things going on. Hoping you get relief soon and back on meds that have helped. Keeping you in my thoughts xo

  • pamstayner
    pamstayner Member Posts: 111 Member
    #8
    concern for you

    I hate that you have had to stop the Nivo... I am going to follow you close Footsie... you and I started the Nivo about the same time.... so of course I compare myself to you.  Please be well

    Pam

     

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited September 2016 #9
    APny said:

    I'm so sorry about the

    I'm so sorry about the excruciating hip pain. It's not something you need on top of all the other things going on. Hoping you get relief soon and back on meds that have helped. Keeping you in my thoughts xo

    Its OK

    It just means I enjoy the gaps between the coughs more. :-)

  • hardo718
    hardo718 Member Posts: 853 Member
    #10
    Stomps

    You're in my thoughts & prayers.  I'm so sorry to read you're still suffering with this.  Looking forward to some good news from you soon.

    Hugs,

    Donna~

  • penitent
    penitent Member Posts: 79
    edited September 2016 #11
    Thinking of you

    Sorry to hear what you're going through.  John is starting his first infusion of Nivo today and I hope that it has the same result as you for the mets in the lungs.

    Take care...

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    edited September 2016 #12
    Brit Speak

    So, you take the lorry to the Doc.  Now, do they take your temp in the boot or the bonnet?

    Wish all our Good Wishes could do some good for you.  Please know that we are hoping and praying.

    donna_lee

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #13
    pamstayner said:

    concern for you

    I hate that you have had to stop the Nivo... I am going to follow you close Footsie... you and I started the Nivo about the same time.... so of course I compare myself to you.  Please be well

    Pam

     

    Pam

    I'll do what I can Pam. I see my onc tomorrow.

  • marosa
    marosa Member Posts: 334 Member
    #14
    Here thinking of you Stomps!

    Very much!

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #15
    pamstayner said:

    concern for you

    I hate that you have had to stop the Nivo... I am going to follow you close Footsie... you and I started the Nivo about the same time.... so of course I compare myself to you.  Please be well

    Pam

     

    Pam

    back on the Nivo. Getting infused as I type 

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #16
    Back on the NIVO.. its good

    Back on the NIVO.. its good news right? A sign all systems good to go now?

    Hugs my dear man,

    Jan

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    #17
    Stomps

    Foots,  Keep on stomping!

     

     

  • stub1969
    stub1969 Member Posts: 986 Member
    #18
    One down

    One down Foots.  Today went well now let's pull some good news on Friday. 

    Stub

     

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    #19
    donna_lee said:

    Brit Speak

    So, you take the lorry to the Doc.  Now, do they take your temp in the boot or the bonnet?

    Wish all our Good Wishes could do some good for you.  Please know that we are hoping and praying.

    donna_lee

    Its worse Donna, its London speak

    I take the jam jar down the frog and toad to see the doc. I'm VERY pleased to say that the temperature is  definitely taken under the bonnet ( in my north and south in the middle of my boat race to be precise)

    I really just want to get back on the Nivo as fast as I can. It seemed to be working apart from that one met. Surely it has to help achieve this abscopal effect even if I have no more radiation.

  • Teashea
    Teashea Member Posts: 89 Member
    edited September 2016 #20
    Stomper

    Wow, Very sorry to hear what you have been going through. Prayers going up for you.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited September 2016 #21
    Teashea said:

    Stomper

    Wow, Very sorry to hear what you have been going through. Prayers going up for you.

    No probs Tea

    I was disappointed that the abscopal effect (which sounded good  for myself and the future) was being abandoned. I think that I have a lot of radiation still in my body, and restarting the Nivo gives me hope that the technique might actually be tested.

    If it works I think its a game changer.

    How are you doing?

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