Having Pain Pump on Thursday/Friday

camul
camul Member Posts: 2,537
in Breast Cancer #1

Thursday i go in and the doctor does a 4 inch incision in my spine at the l4 -l1 level and will put in liquid fentanyl.  If I have no reaction, I will be admitted Friday morning for the actual pump.  It has to go in my abdomin and the catheter William wind thru to the lumbar spine (the same incision from the day b4).  I am hoping to come home Saturday but was told 1 - 4 days depending on my blood clotting and blood pressure.  Both have been issues in the past. 

I dont know anyone who has done this.  My new pain doctor is from ME Anderson, and my pain doctor whom I like a lot, is turning me over to him bcuz he is so good with bone mets.  He specialized in the pump.at MD Anderson.  

I am scared.  I have had so many surgeries and each one has been harder to come out of.  Then, him explaining to my life that he will per the kit prescribed in case the pump malfunctions and I OD,, didnt make it easier, although. I understand things can happen.  One asked of there were any side effects and he ssaid of course, there is always the possibility of peralysis when working on the spinal column.....   So that made me shutter a bit, although i know he has to disclose all that could go wrong, it is not normal.

Is anyone familiar with the pain pump?

Bush,

Carol

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Comments

  • tufi000
    tufi000 Member Posts: 745 Member
    #2
    PP

    My uncle had it and while it wasn't magic, things became bearable but he wasn't happy though that could easily have been him and not the procedure. Perhaps it isn't a good example but he is the only one I have first hand knowledge of.  I hope the best at every step for you Ninja

  • camul
    camul Member Posts: 2,537
    #3
    tufi000 said:

    PP

    My uncle had it and while it wasn't magic, things became bearable but he wasn't happy though that could easily have been him and not the procedure. Perhaps it isn't a good example but he is the only one I have first hand knowledge of.  I hope the best at every step for you Ninja

    you are the first!

    I can't believe no one has done it that I know of.  I'll nt know if that is good or bad.  At this point, anything would be better than what I am doing and knowing my body is getting so use to the med and as it progresses nothing will help.  This is all pretty interesting, just wish I wasn't learning all about it for me!

    Thanks....  I always appreciate you and will let you know how it goes,

     

  • Clementine_P
    Clementine_P Member Posts: 518 Member
    #4
    camul said:

    you are the first!

    I can't believe no one has done it that I know of.  I'll nt know if that is good or bad.  At this point, anything would be better than what I am doing and knowing my body is getting so use to the med and as it progresses nothing will help.  This is all pretty interesting, just wish I wasn't learning all about it for me!

    Thanks....  I always appreciate you and will let you know how it goes,

     

    Sister-in-law

    My sister in law had it and it definitely improved the quality of her life.  She too had had many operations and was concerned about having another one, but for her it made a positive difference.

  • tufi000
    tufi000 Member Posts: 745 Member
    edited May 2016 #5
    Only U

    Only You ♫ could call this interesting Ninja!

  • lintx
    lintx Member Posts: 697
    #6
    Hi Carol

    Carol, I'm hoping for the best outcome for you w/the pain pump.  Sounds like it may be helpful.  You're a strong woman and will go through it easily.  Hugs, Linda

  • Pixie Dust
    Pixie Dust Member Posts: 424 Member
    #7
    Hope it works well for you

    My dad was turned downed several years ago for a pain pump for back pain. He has had numerous surgeries on his back and the doctors say no more surgery. His nerves are all knotted up in a ball in the bottom of his back and he has had infusions done. He broke his back working in the coal mines. The only way he can get around today is a walker and cane. He goes again this Thursday to a pain management doctor to see if this doctor will do the pain pump on him. I know that he will have to go through alot of test for this and it will take alot of time for them to decide upon this. Doctors today are not allowed to prescribe pain medicine to the ones that need it because of all the drug addicts. Camul, I am so happy for you get to have this put in. I do not feel your pain, I do know that it has to be really bad to have this ok'd by insurance to have one put in. Wishing you the best of luck with this procedure and you can get on with your life better than what you are now.  Let us know how you are doing.   Hugs,   Pixie                                                                                                                                                                                                                                                  

  • camul
    camul Member Posts: 2,537
    edited May 2016 #8
    Thanks everyone.

    Clemintine thank you.  you and tufi are the best source if info.  i see the neurologist at 1p today for thr consult, yet he has me scheduled for Friday, as l o ng as i'm pass the trial Thursday.

    yeah! i guess finding this medical stuff interesting may be a stretch but it is amazing how much my body has endured and i am still walking, can reach my feet, need help with socks and shoes.  if i fall with nothing around to pull myself up on, i am toast.  i use to be able to crawl to a tree, wall, doornob... but now i have tumors all over my right knee and cant crawl across cement.  i cracked up in a store a few months back, i fell.  my right leg went out, i went down. no one would help, they would have lost their spot in christmas line, about an 80yr old man asked if i needed help, he gave me his arm, told me how he got his wife up without her pulling him down.  i was laughing, and so did he.   i see humor, but mostly it is amazing what our bodies can do.

    it is also so important that we, as patients, take the options we have research them, including side effects, and make educated decisions.  i have learned that some of the treatments presented were not ones where the benefits outweighed the risks,  especially when i am at the point in this journey where nothing is going to save me.  i am looking strictly at palliative care for the pain.  So whatever the treatment, if there is a 20% chance it may help with the pain, but a 53 % chance of adverse side effects..  adverse to me is se that are dangerous and will require treatment be stopped. I would not do the treatment. However, the pain pump i will need in order to get through whatever is left, the odds are good that it will work (statistically) with very low fatilities.  i am already reacting t o the pain patch, which is heavy duty Fentanyl.  My body n is becomming immune t o the effectiveness of th e medication and usually the benefit of the patch lasts less than 40 hours and i start g etting the chills, sweats, but freezing at the same time, yet i have to go at least 48 hrs between patches.  (i have changeed it a few times between 38-40 hrs), so this is where i am.  

    thank goodness i can see the humor though.  

     

  • tufi000
    tufi000 Member Posts: 745 Member
    #9
    Laugh is The Way

    Thank you for the compliment coming from you means soooooo much to me especially as I now prepare for another follow up MRI. Ninja your spirit endures and teaches that it CAN!

     

    Lovin' u

    Sherry

  • aisling8
    aisling8 Member Posts: 1,627 Member
    #10
    Hi Carol

    The little I know about medication pumps has come from expert doctors talking about them in depositions. A couple weeks ago a neurologist was talking about the pump in relation to a medication to reduce spacticity, not for pain, but I'm assuming the procedure for putting in the pump would be the same. He said it was fairly noneventful. The other thing I've picked up over the years, again, from doctor depos, is that one of the benefits of a pump is it gives the person fewer side effects from the same medication when it's delivered via the pump.

    I'll be thinking about you and sending good vibes your way.

    xoxo

    Victoria 

  • Teach76
    Teach76 Member Posts: 354 Member
    edited May 2016 #11
    Sending prayers

    Hi, Carol

         I have no words of wisdom or advice, just adding my prayers for comfort and a smooth transition in treatment. I know you are not looking forward to spending a few days in the hospital if necessary, but try to enjoy others doing for you for a few days!

    Kathy

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #12
    Teach76 said:

    Sending prayers

    Hi, Carol

         I have no words of wisdom or advice, just adding my prayers for comfort and a smooth transition in treatment. I know you are not looking forward to spending a few days in the hospital if necessary, but try to enjoy others doing for you for a few days!

    Kathy

    How did it go?

    It's Saturday. . .

    And I just want to add that your advice and knowledge is worth so much to so many.  Thank you.

    Suzanne

  • camul
    camul Member Posts: 2,537
    edited May 2016 #13
    It went better than I thouht.

    It went better than I thouht.  My stomach is sore, kind of like a c section.  My back is a little uncmfortable.  Found out when the neuro surgeon came in, my pain doctor was doing surgery next door, and came and assisted when he finished his surgery.  The pump was working well so he loaded it.already, hence back feeling dis omfort, legs, almost painfree.  He said if they wouldn't have loaded it, I probably wouldn't even feel much of the stomach pain.  

    I declined percocet for pain today, as it is above the muscle, and ice helps more for skin wounds.  I took one last night before sleep, and it hyped me up, but even worse, dropped my blood pressure down to 67/35, and the alarm started, they finally disconnected it from 6a on, and pushed fluids, had me walking, it took until noon to get.it to 92/ 62. The surgeon would told me yesterday if it dropped like that, anything below 80/50 I would be staying I. Until I went a couple hours with it over.  I drank so much water, ate lunch, son and I just kept.walking.  

    So 8 hours after the alarm wouldn't stop, I came home. Now on oxygen and son& gf keep checking in on me.  Few more issues but just the difference in pain already I am glad I did it.   Then start ibrance  on May 25th.  Of course I sit next to a lady at dinner 'Gala for Hope' Thursday night and she starts I how she just had to stop it, that it WA shorrible, ineffective  and she had side effects.  I smiled and said I start it in 2 weeks, isn't it great  that we all react differently  to these treatments?  I just laughed.  

    Then they did the presentations, I got a lovely award.  It is a standing wood and glass plaque.  My son went with me, the best part was him telling me afterwords how proud he is of me, for just always being there for him and his  brother and how it made him feel when I got up in front of almost 200 people and talked and everyone was laughing, then crying...  it was really special because we are so fortunate to have The Cancer Wellness House.  Only 7 like this nationwide.  Fully funded from local organizations or fundraisers.  I don't know what the award was for, I didn't hear that part, I should ask. Lol. It was pretty special.  And this week I had my two minutes of fame on tv.  If anyone wants to see it.  You. An go to BYUTV/Rando.Acts. my episode is the car, and remodel ninja.  I am in parts throughout.  The white haired lady with big glasses in the Ferrari with an actor from CSI.

  • aisling8
    aisling8 Member Posts: 1,627 Member
    #14
    Hey, Movie Star

    I found it, your ride in a Ferrari. You look beautiful!!

    Congratulations on the award, being in a cool video, and for working on a solution to chronic pain.

    xoxo

    Victoria

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #15
    I was so excited

    to see you in that video, Carol.  You made my little heart sing.  And to top that off, the pain pump works!  I'm so happy for you today.

    Suzanne

  • camul
    camul Member Posts: 2,537
    #16
    Thanks, means a lot to me.

    I am suppose to start I branch 25 May.  So I am talking to a lady at the hospital when I went walking, she also has bc.  First thing she says is how she just stopped I rance and every possible thing wrong with it.  I didn't say anything.  I just kept thinking, we all react differently.  But had to laugh.  First person who I have ever talked to, other than Olga who was on it.  Thank goodness Olga was positive about ea h treatment she did.

     

  • tufi000
    tufi000 Member Posts: 745 Member
    #17
    WOW WOW WOW

    OK Ninja! Karma works!  Relief for you!  Fame and rewards!  SOOOOOOO  deserving! I am overwhelmed and speechless and grateful to know you. Now and forever I care and love.

  • lintx
    lintx Member Posts: 697
    #18
    Oh, how fun, Carol!!

    You are so pretty!  The video was so cool and so are you!  Thanks for sharing with us.  Also, happy to hear about the pain pump success.  Big hug, Linda

  • Clementine_P
    Clementine_P Member Posts: 518 Member
    edited May 2016 #19
    You looked great!

    Carol, you looked right at home sitting in that fabulous Ferrari!  It was wonderful to see you and to see that you got a little spoiled as you so very much deserve.  I'm happy to hear that your pain pump seems to be helping too.  Yes, just keep telling yourself that everybody reacts differently and you may find Ibrance to be a piece of cake!

    Clementine

  • lamb5487
    lamb5487 Member Posts: 1
    #20
    camul said:

    Thanks, means a lot to me.

    I am suppose to start I branch 25 May.  So I am talking to a lady at the hospital when I went walking, she also has bc.  First thing she says is how she just stopped I rance and every possible thing wrong with it.  I didn't say anything.  I just kept thinking, we all react differently.  But had to laugh.  First person who I have ever talked to, other than Olga who was on it.  Thank goodness Olga was positive about ea h treatment she did.

     

    Ibrance

    Hi,  I have Stage 4 Breast Ca with Bone mets in my spine (T-1 & T-2)  I get a Faslodex injection 1x per month & Xgeva injection 1x per month.  The Ibrance is 21days on & 7 off.  The only minimal side effect I have is fatigue, but not bad.  I was dx with breast ca in 05/2010 stage 2 & Stage 4 with bone mets 05/2015.  Everyone is different but hope this helps!

    Kim

  • camul
    camul Member Posts: 2,537
    edited June 2016 #21
    aisling8 said:

    Hey, Movie Star

    I found it, your ride in a Ferrari. You look beautiful!!

    Congratulations on the award, being in a cool video, and for working on a solution to chronic pain.

    xoxo

    Victoria

    lol my 5 minutes (or 2 1/2) of fame.

    It is fun to look at.  My son and dil, became grandparents yesterday, so thru marriage that makes me great gma!  Baby is a beautiful little girl.  

    The pain pump has Don wonders so far on the pain.  However, I am sleeping even more as theywill not lower the patch dose for 2 more weeks. Or we are hoping that is why.  My tumor markers jumped again.  Last month, it was down.  I got excited and he told me not to.  That he looks at it on a graph, and one month dropping after a steady incline will usually be different.  He was right, when I went last Tuesday, it went up double.  The one he got back on last Friday, he expected to be up another 50 - 100, so it is agressively going up, and the one time decline was an error.  I could call and get the rests, but would rather not know!

    It has been 90 100 here, I need to be careful what I wish for.  My body does not warm up when cold, or cool down with heat.  Worse now, he says from all the opiates I. My system.  I am trying g to figure why anyone would want to use them, this sucks!

    Love summerthough and tomorrow our heat spell is suppose to break

      80 90 is doable, 95 - 100 is not!  Enjoy your ocean breeze Victoria!

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