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Cancer treatment update: the plan

mrmike08075mrmike08075 Member Posts: 11,828 ✭✭✭
edited October 2016 in General Discussion
My radiation oncologist - the head of the radiation oncology department - my primary care physician - my hematologist / oncologist - my surgeon - my senior nurse advocate - and my girlfriend had a meeting to look at the latest pt - mri - CT scans with contrast and go over my blood work (8 full vials)...

With the backing of the board at U-Penn they got my health care provider to pre-approve the latest platinum based chemotherapy regimen.

Continuous oral chemo (twice a day - very high doses) except for once a week I will get a very high doses of of the platinum chemo (through my Bard Power Port subq chest implant) (via a rapid infuser) They will hang more than 1 bag of the posion followed by a bag of saline and glucose...

I will get 3-4 intermuscular shots each time (to battle iron deficiency - vit d deficiency - an immune boost cocktail - and some sort of mild sedative / anti psychotic / anti nausea combo...

They are talking about a minimum of 4 hours in the comfy chair once per week (they recommend the quiet / dark room or an adjustable bed).

Plus travel time - check in time - labs - vitals - port maintenance - etc.

They believe that a super high dosage sledgehammer approach is the best option and they think I can handle it even though it's a closely monitored clinical trial instead of the usual thing...

They are specifying a 6 month treatment period.

The side effects look terrible.

I want to live - to fight - to be stoic and determined...

But I just want the pain to stop.

The team is very pleased with my progress and how well my body handled the 1st round...

The senior nurse asked me to ring their survivors bell the traditional 3 times. I could not...

I agree to do so one time because it's important to the staff - nurses - and other travelers / patiants.

But it feels like a lie.

I don't know if I am strong enough to do this -but I will try.

Mike

Comments

  • Rack OpsRack Ops Member Posts: 18,593 ✭✭✭
    edited November -1
    I don't know that in the same position as you, I would have made the same decision, but I wish you all the best.

    Keep us updated.
  • pwilliepwillie Member Posts: 20,233 ✭✭✭
    edited November -1
    ...you can do anything with prayer....I will have special intentions for you [email protected] 4.00pm mass...
  • SCOUT5SCOUT5 Member Posts: 14,688 ✭✭✭✭
    edited November -1
    Best wishes Mike. When to fight and when to rest, either way, it's your right to choose and your right to do it your way.

    I don't know what I would do or if I'm even strong enough for what you are going through. I had renal cancer, but surgery cut it out and they tell me it's gone, nothing like what you are experiencing.
  • JamesRKJamesRK Member Posts: 25,672 ✭✭✭
    edited November -1
    We're all pulling for you Mike. You're a tough man. I'm proud to know you.
    The road to hell is paved with COMPROMISE.
  • Franz?Franz? Member Posts: 2,628 ✭✭✭✭✭
    edited November -1
    No offense intended, it sounds like they're turning you into a catalytic converter.

    Kick Cancer's *. Then beat hell out of the bell.
  • dav1965dav1965 Member Posts: 26,544 ✭✭✭
    edited November -1
    MRMIKE i had 3 HEAVY doses of Cisplatin and something mixed with it. I had one every 3 weeks. I went from 160 pounds of muscle to 105 pounds. My biggest problem was it made me throw up constantly.

    My wife would wake me up every 2 hours to take nausea medicine and liquid Morphine.

    My cancer is a little different than yours. I first had surgery and then i had 5 or 6 surgerys. That was why i was in bed about 1 year. As soon as i would get a little better they would do something again.

    I got almost double the radiation that most people get. My jaw bone joint hurts 24/7 they told me they could give me another one and when i can not stand it then i will do something about it.

    My new dentist saw my x-ray of my jaw and he found it hard to imagine it.

    MRMIKE When i finished chemo/radiation for good they had a gong to hit and i would not hit it. How could i celebrate winning when others lost. I just hugged the lady and said no thanks.

    What you are getting ready to go through is going to be hell. When i told my Mom and Dad we were sitting on the porch that i had cancer and that i did not have much of a chance my Dad asked me what i was going to do fight or quit.

    I thought about it and told my Dad have you ever seen me quit anything. He looked at me and said nope.

    A couple things that might help would be make sure you over communicate things to your cancer team. You can not give them enough information.

    Another thing is take your medicine for nausea. Its harder to stop throwing up than get it started.

    Also stay ahead of your pain. Take what is prescribed like you are supposed to. If your pain gets you uncomfortable take your pain meds. Do not try and be a hero but take what you are supposed to. If it hurts to much ask them to raise your prescriptions. That will not be a problem. Why hurt a 8 or 10 when you can feel better.

    The last advice i have is give thanks to your care giver. When i was awake i never saw my wife cry but when i woke up a few times to go to the bathroom i would find her crying.

    Remember they are hurting as much as you. There are going to be times when you are grouchy because you are in pain or depressed.

    I just remembered if you need something for depression DO NOT BE AFRAID TO ASK. I had to take something for it and i still do. I take 2 different things for it.

    My wife strongly suggested i get a higher dose because i would get frustrated at not being able to do things.

    I take 4 different pills for depression and to calm me down. I still get mad but i am able to control it.

    Prayers asked from here. If you ever want to talk my number is 1-252-343-9471 call anytime.
  • 1BigGuy1BigGuy Member Posts: 4,032 ✭✭✭
    edited November -1
    What Dave said. Never surrender; never give up.
  • montanajoemontanajoe Member, Moderator Posts: 51,141 ******
    edited November -1
    Prayers and best wishes,,,[:)][:)][:)]
  • cnsaycnsay Member Posts: 1,373 ✭✭✭✭✭
    edited November -1
    Prayer for you sir.
  • Ditch-RunnerDitch-Runner Member Posts: 18,735 ✭✭✭
    edited November -1
    keep the fight up and know we all will be here to share your thoughts and conversations to help fill your time
    prayers ask for the best possible outcome
  • GuvamintCheeseGuvamintCheese Member Posts: 38,932
    edited November -1
    You probably can handle it but it's a *! that's what I'd do.
  • Old-ColtsOld-Colts Member Posts: 22,476 ✭✭✭
    edited November -1
    Prayers said for peace, comfort, and strength for you; wisdom and guidance for your physicians; successful treatments; and that you be restored to good health!

    If you can't feel the music; it's only pink noise!

  • popgunpopgun Member Posts: 691 ✭✭✭✭
    edited November -1
    Best of luck to you.

    Prayers sent your way.
  • Dads3040Dads3040 Member Posts: 13,788
    edited November -1
    Prayers from here.
  • bigoutsidebigoutside Member Posts: 19,443
    edited November -1
    No medals are given for enduring pain. Take the pain mess they give you and raise your hand if you need more.
  • mogley98mogley98 Member Posts: 17,683 ✭✭✭✭
    edited November -1
    Prayers that you can beat this disease.

    Each treatment is probably bringing science closer to a cure, at least I would like to believe that.

    God Bless you Mike.
    Why don't we go to school and work on the weekends and take the week off!
  • mjrfd99mjrfd99 Member Posts: 4,520 ✭✭✭
    edited November -1
    Prayers from all us here.
  • mlincolnmlincoln Member Posts: 5,039 ✭✭✭
    edited November -1
    I hope this works out for you and that you get better. It sounds like you have some very good people looking after you.
  • OakieOakie Member Posts: 38,633 ✭✭✭
    edited November -1
    Mike, I didn't know that you lived 30 minutes away from me. I was treated at UofP also. I had Dr. Druck, who is now retired. I then had Dr. Sue Sailor. She is wonderful, but is probably retired now too. I had prostate cancer. Keep fighting. Let me know if you need anything more then my prayers.[;)]I will make the trip north from Atco. You are at the best hospital in the area for cancer. Keep fighting the fight and I agree, screw that bell. I will ring it when I beat it. You got this. Oakie
  • jax18421jax18421 Member Posts: 138 ✭✭✭
    edited November -1
    Mr. Mike, I am also undergoing chemo at HUP. I had surgery Aug. 5th to have cancer in my colon removed and re-sectioned. Was released on Aug. 17th. and started chemo (Oxaliplatin) on Tues. 27th. of Sept. I have opted to forego the port and get mine intravenously in my arm. I then am on 1800mg. of Xeloda tablets twice per day for 2 weeks. Then I stop for a week and then go back and start all over again for 6 months.
    I had a PET scan on Tues. the 27th. and there weren't any "hot" spots. My Oncologist at HUP is Dr. Arturo Loaiza-Bonilla and my surgeon was Dr. Najjia Mahmoud (I highly recommend her) I hope you have a very favorable outcome and perhaps we will meet one day in the course of our treatment.

    Paul
  • mrmike08075mrmike08075 Member Posts: 11,828 ✭✭✭
    edited November -1
    I do appreciate the support and thread responses and private emails.

    I mostly keep a positive attitude and plug away...

    Sometimes it's a stoic repetative circle of behavior and preparation and seems like an endless routine.

    Get up early - go to work - go to treatment - go back to work - go home - cram all the stuff that needs being done into a 2-3 hour period - load up on meds - attempt to sleep - rinse and repeat.

    Add the infusions - intermuscular shots - blood draws - vitals - port maintenance - specialist consults - pharmacy visits - nausea - pain - cognitive disonance - vomiting - diarrhea - constipation - nose bleeds - dizziness - aphasia - etc...

    But other people are dying or dead or crippled or in worse pain or have less time or less support or less hope or less faith or less luck...

    I am sure I will adapt to the next treatment regimen - and deal with the side effects.

    I take a lot of pain meds as a daily maintenance routine and have other pain - sleep - anxiety - relaxers - nausea relief - etc as back ups or supplements as needed.

    Pills - patches - creams - ungents - oils - poltistice - potions - etc...

    But I need to go to work and I need to try and maintain some level of normalcy balanced against being and opiate zombie who stays in bed.

    I struggle to find the balance with this and with other things.

    Thanks for reading and thanks for listening.

    My posting here when can't sleep or eat or stand or deal with the pain or while waiting for treatments is an escape for the mind - a distraction from the now.

    Mike
  • rongrong Member Posts: 8,459
    edited November -1
  • BarzilliaBarzillia Member Posts: 21,911 ✭✭✭
    edited November -1
    "Anger has two children -.hope, and courage." Augustine, Bishop of Hippo

    "Und es wird nicht hineingehen irgend ein Gemeines und das da Greuel tut und Luge,
    sondern die geschrieben sind in dem Lebensbuch des Lammes."
  • 84Bravo184Bravo1 Member Posts: 11,109
    edited November -1
    Mike, you are one tough Dude. You have the best wishes, and support of many Members here, including me.

    You are in my thoughts and Prsyers, Brother.

    -Ken-
  • punchiepunchie Member Posts: 2,792
    edited November -1
    Mike, our prayers continue for you and yours. Often times we forget how our illness affects our family, glad to see you don't. My next CTs/w/contrast are scheduled for 18 Oct with Drs from BMT(Bone Marrow Transplant), chest surgeon, and lung doc the next day. Remember this is nothing but another speed bump in the road of life.
  • mrmike08075mrmike08075 Member Posts: 11,828 ✭✭✭
    edited November -1
    It's funny.

    Some people avoid you like you have cancer..


    Many send cards or baked goods or gift cards...

    Some freeze up - they don't know how to react...

    I have been serving range duty with the same guy 1990.

    He actually cried. A true man's man and a friend - tough as nails.

    Not that I know how to react or how to break the news well.

    My parents worry - as parents do.

    Makaila is the one that bothers me the most. She has stuck with me and knows what the odds are. Causing her pain or fear or heartache hurts me badly cause I cannot fix it.

    Sometimes my reflection in the mirror is like a punch to the stomach.

    Dealing with something like this is not something they teach us...

    Many of us have lost people close to us and think we understand but we don't - not fully.

    I went and visited my grandmother today - cleaned her headstone and did a little plot improvement.

    She sits on a hill over looking rows of headstones - there are some nice trees and a small lake with a stone bridge and a fountain.

    Just talked with her for awhile.

    I try but I don't think I handle things well anymore.

    Mike
  • nordnord Member Posts: 6,106
    edited November -1
    Mike,

    Usually I'd reply by private mail. In this case I'll use the public forum...

    Some of your observations are spot on. One in particular is that those who have not walked this road cannot possibly comprehend what must be faced and dealt with. All the empathy and love in the world still won't get them there. Isn't it strange what this disease does as we're the ones who feel guilty for causing hurt to those we love? Somehow we feel that we've let others down even when we know that we didn't choose to be sick.

    Your friend? Strong men cry. I know this to be true and I cry for you as I write. Don't be afraid to hug this man and cry with him. He cares deeply about you. Treasure his friendship and comfort him. He needs it as much as do you.

    You question your handling of cancer. Don't! Each of us is forced at some point to make a decision as to what to share. I decided that no matter how difficult I'd be open and honest with everyone. It was difficult and painful to tell my two sons of my disease and the prognosis. As I said, strong men do cry. On balance, though, it's been easier with friends and clients. It just makes things easier to be totally honest.

    Your personal strength? Good heavens, man! You're on death row all by yourself. The hallway to the death chamber is immediately in front of your cell. When the cell door opens you'll either turn right or left. One way will be toward life and the other toward death. And you worry about your personal strength? Mike, you're stronger than almost everyone else on this planet! You face this every moment of every day!

    One day I hope to meet you. When I do I'll share something deeply personal. Here on the public forum I'll only say this... LIVE! LIVE by the moment. LIVE by the day. What will come will come. Don't dwell on things you cannot change or control.
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