Complications

forme
forme Member Posts: 1,161 Member
Hi All,
First I want to say thanks for all of your warm and caring support.
This week has been crazy. I started out getting ready to receive the big dose rads. I did all the pre stuff including Injections of some crazy stuff, WBS,small rad dose and more CT. Then, yesterday after the WBS, the rad oncs told me that I will need to be hospitalized for the big rads today. Then last night at MIL apt, I had severe pain and passed out. VERY scary. So today the Dr says I will not be getting any other rads since it won't work for the ca cells. I guess my ca cells have changed ?? This is bad and more bad news for me. All of the different scans cannot pinpoint the ca, So this means no surgery till tumors show or cancer lights up, this is a very bad option since it would mean waiting for an unknown length of time, or the only other option I have is to start chemo. This sounds like the best of the bad choices.
My emotions are all over the place. I have been waiting 3 months to get the rads, now it won't happen. First they start then they stop... I am glad for that, since it was so horrible the last time and this time would have been even harder. My spleen still is a mess and causing tons of pain. I am told that the chemo might be doxorubicin and cisplatin. This is still undecided, but probable. Do any of you receive one of these..
Tonight I am still feeling the nausea and just yucky. I am scared, which does not sit well with me. To be told rads can no longer be used and that there are few options is hard, very hard.
I am overwhelmed and ready to cry.
Lisha

Comments

  • allmost60
    allmost60 Member Posts: 3,178
    Where to begin!
    Hi Lisha,
    I've read your post twice now and both times all I could say was "oh my gosh"! I know nothing about radiation nor the chemo cocktail you mentioned. What I do know is you have every reason to be scared and I am so very sorry you are going through all of this. If radiation is no longer an option then are you saying the chemo is a viable option and will work on your cancer cells? Hopefully in the next few days your doctor will come up with a game plan thats better than having you sit around waiting for tumors to show up! It all sounds so very complicated and I can only imagine how frightening this is for you. I don't know how to help you which is also very frustrating. One question keeps popping in my head....If they are saying they can't pinpoint where the cancer is, then how did they come up with this chemo cocktail of doxorubicin and cisplatin? Well...the last thing you need is more questions, as I'm sure you have a whole list of your own that you want answered. Please know you are in my thoughts and prayers...don't know what else to do for you, but I do believe prayers are very powerful. My heart goes out to you Lisha, and God bless you. Please keep us posted. Love..Sue
  • forme
    forme Member Posts: 1,161 Member
    allmost60 said:

    Where to begin!
    Hi Lisha,
    I've read your post twice now and both times all I could say was "oh my gosh"! I know nothing about radiation nor the chemo cocktail you mentioned. What I do know is you have every reason to be scared and I am so very sorry you are going through all of this. If radiation is no longer an option then are you saying the chemo is a viable option and will work on your cancer cells? Hopefully in the next few days your doctor will come up with a game plan thats better than having you sit around waiting for tumors to show up! It all sounds so very complicated and I can only imagine how frightening this is for you. I don't know how to help you which is also very frustrating. One question keeps popping in my head....If they are saying they can't pinpoint where the cancer is, then how did they come up with this chemo cocktail of doxorubicin and cisplatin? Well...the last thing you need is more questions, as I'm sure you have a whole list of your own that you want answered. Please know you are in my thoughts and prayers...don't know what else to do for you, but I do believe prayers are very powerful. My heart goes out to you Lisha, and God bless you. Please keep us posted. Love..Sue

    A little info
    Hi Sue,
    Here I am wide awake. All I know right now is that the options are just the two. Wait and then do surgery and or chemo or do chemo. The Dr mentioned the chemo drugs because those are some of the few that have been used for advanced ca. The rate of cure is not the best using chemo, but at this point, what am I supposed to do... They know the ca is in my body, just don't know where.. Sucks! I plan on having a longer conversation with my doc and onc tomorrow. I am ready to move forward. I am tired of waiting and want this ca to be gone.. I was told today that even if the ca cells had been able to respond to the rads the rate of success would have been around 40% at best! No one told me that before today.. LAME DOCTORS. I have been thinking that maybe I need to go to a different ca center. Just a thought.
    I will keep you posted , you all have become my lifeline to reason and hope and sanity. Stay well, cold and flu season is upon us.
    Lisha
  • vinny59
    vinny59 Member Posts: 1,032
    forme said:

    A little info
    Hi Sue,
    Here I am wide awake. All I know right now is that the options are just the two. Wait and then do surgery and or chemo or do chemo. The Dr mentioned the chemo drugs because those are some of the few that have been used for advanced ca. The rate of cure is not the best using chemo, but at this point, what am I supposed to do... They know the ca is in my body, just don't know where.. Sucks! I plan on having a longer conversation with my doc and onc tomorrow. I am ready to move forward. I am tired of waiting and want this ca to be gone.. I was told today that even if the ca cells had been able to respond to the rads the rate of success would have been around 40% at best! No one told me that before today.. LAME DOCTORS. I have been thinking that maybe I need to go to a different ca center. Just a thought.
    I will keep you posted , you all have become my lifeline to reason and hope and sanity. Stay well, cold and flu season is upon us.
    Lisha

    wow
    Hey Lisha, this news really gets me upset, I really think you need to find another group of doctor's to get a fresh pair of eye's on your diagnosis and what treatment would be best for you..... all my prayers Vinny
  • KC13167
    KC13167 Member Posts: 215
    forme said:

    A little info
    Hi Sue,
    Here I am wide awake. All I know right now is that the options are just the two. Wait and then do surgery and or chemo or do chemo. The Dr mentioned the chemo drugs because those are some of the few that have been used for advanced ca. The rate of cure is not the best using chemo, but at this point, what am I supposed to do... They know the ca is in my body, just don't know where.. Sucks! I plan on having a longer conversation with my doc and onc tomorrow. I am ready to move forward. I am tired of waiting and want this ca to be gone.. I was told today that even if the ca cells had been able to respond to the rads the rate of success would have been around 40% at best! No one told me that before today.. LAME DOCTORS. I have been thinking that maybe I need to go to a different ca center. Just a thought.
    I will keep you posted , you all have become my lifeline to reason and hope and sanity. Stay well, cold and flu season is upon us.
    Lisha

    Oh, my.
    Lisha, Many, many big deep, strong, electronic hugs to you. Prayers your way. Be strong. Kellie
  • miss maggie
    miss maggie Member Posts: 929
    friday morning
    Dear Lisha,

    Your post was the first I read this friday morning. What a way to start my day. I am so sorry. I have followed your posts everyday and I saddened by this latest development. Just know you are in my prayers.

    As you would say "Peaceful healing" God Bless Maggie

    DX 09/09 NHL stage 1, marginal, low grade
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    forme said:

    A little info
    Hi Sue,
    Here I am wide awake. All I know right now is that the options are just the two. Wait and then do surgery and or chemo or do chemo. The Dr mentioned the chemo drugs because those are some of the few that have been used for advanced ca. The rate of cure is not the best using chemo, but at this point, what am I supposed to do... They know the ca is in my body, just don't know where.. Sucks! I plan on having a longer conversation with my doc and onc tomorrow. I am ready to move forward. I am tired of waiting and want this ca to be gone.. I was told today that even if the ca cells had been able to respond to the rads the rate of success would have been around 40% at best! No one told me that before today.. LAME DOCTORS. I have been thinking that maybe I need to go to a different ca center. Just a thought.
    I will keep you posted , you all have become my lifeline to reason and hope and sanity. Stay well, cold and flu season is upon us.
    Lisha

    Another Opinion
    Lisha,
    Please find another group of Drs. You can not afford to have these guys messing around with your health. I just can not understand why they can not pinpoint the cancer. IF THEY KNOW THE RESPONSE RATE THEN WHY DON'T THEY KNOW WHAT TYPE OF CELL IT IS WOULD BE MY QUESTION.Prayers are with you. John (FNHL-1-4A-5/10)
  • onlytoday
    onlytoday Member Posts: 609 Member

    friday morning
    Dear Lisha,

    Your post was the first I read this friday morning. What a way to start my day. I am so sorry. I have followed your posts everyday and I saddened by this latest development. Just know you are in my prayers.

    As you would say "Peaceful healing" God Bless Maggie

    DX 09/09 NHL stage 1, marginal, low grade

    So sorry
    Lisha,

    I follow all of the posts every day- we are a family. This beautiful group has lifted my spirits more times than I can say. So as your sister I send you hugs and love and prayers. I believe in the power of prayer and this "family" is lifting you up. May you find some peace at this time. And I do agree that having another set of docs look at your case is a great idea. I know that might sound exhausting but sounds like a good next step.

    We're with you.

    Donna
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    onlytoday said:

    So sorry
    Lisha,

    I follow all of the posts every day- we are a family. This beautiful group has lifted my spirits more times than I can say. So as your sister I send you hugs and love and prayers. I believe in the power of prayer and this "family" is lifting you up. May you find some peace at this time. And I do agree that having another set of docs look at your case is a great idea. I know that might sound exhausting but sounds like a good next step.

    We're with you.

    Donna

    Ah man
    Lisha, hang in there sweetie. I am kind of like everyone else at this point, get another opinion. My uncle has cancer back behind his ear and they know it's a mets from somewhere but can't identify the primary location at all. It's been going on for months. They did rads a couple months ago, but they still can't identify where it's coming from.

    I will keep my thoughts positive and send them your way. Get some rest over the weekend. Sleep helps everything in my opinion.

    Take care,
    Beth
  • Chris17
    Chris17 Member Posts: 175
    dixiegirl said:

    Ah man
    Lisha, hang in there sweetie. I am kind of like everyone else at this point, get another opinion. My uncle has cancer back behind his ear and they know it's a mets from somewhere but can't identify the primary location at all. It's been going on for months. They did rads a couple months ago, but they still can't identify where it's coming from.

    I will keep my thoughts positive and send them your way. Get some rest over the weekend. Sleep helps everything in my opinion.

    Take care,
    Beth

    Lisha
    Lisha my thoughts and prayers are with you today, i would go to another doctor ASAP, i know how these oncs work they really dont tell you anything unless you nag them with questions, which i had to do in my case, its frustrating to say the least, these docs are working for your life, and you need to be informed of everything, and its not fair you were not told of everything before, i truly pray that all will be resolved soon, take care
    Chris
  • truckingalong
    truckingalong Member Posts: 445 Member
    Chris17 said:

    Lisha
    Lisha my thoughts and prayers are with you today, i would go to another doctor ASAP, i know how these oncs work they really dont tell you anything unless you nag them with questions, which i had to do in my case, its frustrating to say the least, these docs are working for your life, and you need to be informed of everything, and its not fair you were not told of everything before, i truly pray that all will be resolved soon, take care
    Chris

    In prayers
    Dearest Lisha,

    I agree with good sleep, more determination to move on to find more strategies and hope. I got diagnosed late because I did not get 2nd or 3rd opinion. So I hope for you to get the right resources for yourself speedily and smoothly. I pray for you in my heart.

    With deep hugs,
    Liz