Complications update

forme
forme Member Posts: 1,161 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi All,
I thought a new thread would be a better way to respond to all of you. First, thank you for all your prayers and positive words. I know that I can turn to you for any advice or just to share my fears/concerns etc. You all are wonderful. Thank you....
I agree with everything you have said. My pcp also is in agreement. I need a new onc! The rad oncs, 3 total, were all so LAME. My primary onc has turned into this unpleasent grumpy no time to explain stuff, dr. My pcp will help me to get a new set of oncs involved. He is fuming mad. BTW he never has liked Stanford. He has a few quirks, but they don't have to do with med stuff. Just billing. I can live with that. I can trust him. Thank God for him.
As you know, I have two lovely cancers. The lymphoma is spleen as you know and also in a lymph in mediastinum area. This ca has been mostly on the back burner, which is fine for the most part. The other , thyroid ca is the one that is putting me through hell.
The plan was to treat it first , which has turned into a bad dream. The ca cells are macroscopic, and not large enough to show on PET. At least in Aug, they did not show up. Most thy ca cells take up iodine, but mine no longer do. This is the bad news. Thy ca goes to bones,lungs and brain. I do not want the cells to get a big hold in those places. So, my only real choice at this time is to have chemo. The chemo drugs are few. Most are not totally successful. I am ready to do almost anything to stop the spread and growth of ca.
It is very complicated. My pcp said it is possible that the chemo will kill both ca at the same time. That would be the best of all, but I don't have much faith in it right now.
I am wishing that this could be resolved soon, but it seems like I am in for a long haul.
I don't usually get real scared, but being told that my options are limited, well that is really scary for me. I HATE CANCER. I mostly feel like I am in control of me, but today I am not feeling so in control.
Please know that I think only good positive thoughts for all of you, every day. I may not post daily, but I am thinking of all of you.
Peaceful healing..
Lisha

Comments

  • allmost60
    allmost60 Member Posts: 3,178 Member
    #2
    GOOD!
    Hi Lisha,
    I will be so very happy to hear when you get the new doctors! Your situation is very scary and complicated but you know we are here for you to get you through. Don't worry about posting every day...the important thing is to get the "NEW" doctors in place and then get your treatments going. In the meantime, if you can't sleep or just need to vent....well...you know the drill! Old night owl here is usually lurking somewhere in the background...ha!"Always" thinking of you with positive thoughts and prayers!!!
    Love...Sue (FNHL-2-3A-6/10)
  • forme
    forme Member Posts: 1,161 Member
    #3
    allmost60 said:

    GOOD!
    Hi Lisha,
    I will be so very happy to hear when you get the new doctors! Your situation is very scary and complicated but you know we are here for you to get you through. Don't worry about posting every day...the important thing is to get the "NEW" doctors in place and then get your treatments going. In the meantime, if you can't sleep or just need to vent....well...you know the drill! Old night owl here is usually lurking somewhere in the background...ha!"Always" thinking of you with positive thoughts and prayers!!!
    Love...Sue (FNHL-2-3A-6/10)

    Smiling
    Hi Sue,
    Just so you know, when ever I read your posts, I smile. You are a bright spot in my world.
    Thanks.. Oh and thanks for being a fellow night owl/libra. We got to stick together. Night time can be a lonely time.
    Peaceful healing
    Lisha
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
    Hang in There
    Lisha,
    I know it is asking a lot,but hang in there til you can get the new Docs. I know,you don't have much choice but to wait. Hopefully the PCP can get you some real good ones. We know you are in a scary situation right now and we are all here for you. I was recently talking to "Truckingalong" about these wimpy Drs. that have our lives in their hands, but act like it is nothing. We do not need them and they are the ones that make the whole medical profession look bad. When you get on track with some decent caregivers I am sure things will start looking up. Again, we are all here for you. John (FNHL-1-4A-5/10)
  • forme
    forme Member Posts: 1,161 Member
    #5
    COBRA666 said:

    Hang in There
    Lisha,
    I know it is asking a lot,but hang in there til you can get the new Docs. I know,you don't have much choice but to wait. Hopefully the PCP can get you some real good ones. We know you are in a scary situation right now and we are all here for you. I was recently talking to "Truckingalong" about these wimpy Drs. that have our lives in their hands, but act like it is nothing. We do not need them and they are the ones that make the whole medical profession look bad. When you get on track with some decent caregivers I am sure things will start looking up. Again, we are all here for you. John (FNHL-1-4A-5/10)

    Thanks
    Hi John,
    Thanks so much. I did read your posts with Liz and wanted to jump in. I didn't because I was so tired and a bit overwhelmed. But you both are correct, there are so many drs that don't give a .... about the real person. I have always been the one who questions everything. Thats the cancer survivor/nurse in me.. But this time I was really surprised by their lack of common sense and even being on the same page. LAME. At least now I hope to be moving into a better situation. I have been waiting since June and thats long enough. I am ready to move forward and fight the battle head on. Thanks again for your constant support.
    Peaceful healing
    Lisha
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #6
    forme said:

    Thanks
    Hi John,
    Thanks so much. I did read your posts with Liz and wanted to jump in. I didn't because I was so tired and a bit overwhelmed. But you both are correct, there are so many drs that don't give a .... about the real person. I have always been the one who questions everything. Thats the cancer survivor/nurse in me.. But this time I was really surprised by their lack of common sense and even being on the same page. LAME. At least now I hope to be moving into a better situation. I have been waiting since June and thats long enough. I am ready to move forward and fight the battle head on. Thanks again for your constant support.
    Peaceful healing
    Lisha

    Docs that just don't get it
    I feel so bad for you honey. Keep up the forward movement. Get more opinions and do something nice for yourself this weekend.

    My co-worker made a dr appt for early December and got a phone call today from them saying they needed to reschedule the appointment. She asked why? the response??
    He has something better to do. Seriously.

    I'd say this person needs a new occupation.

    Take care,
    Beth
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #7
    dixiegirl said:

    Docs that just don't get it
    I feel so bad for you honey. Keep up the forward movement. Get more opinions and do something nice for yourself this weekend.

    My co-worker made a dr appt for early December and got a phone call today from them saying they needed to reschedule the appointment. She asked why? the response??
    He has something better to do. Seriously.

    I'd say this person needs a new occupation.

    Take care,
    Beth

    AGREE
    Beth,
    I wonder if they would have said that if your friend called and would have said I have a big fat check for you? Ain't I nasty? I know exactly what you are saying because I have gotten a few calls from my eye Dr. because he had a golf date to attend. I even made a remark to the secretary once and of course I did not get a response. He is with another group of Drs. and I requested another Dr. and when they asked why I said I was tired of being cancelled over a golf game. I got the new Dr. John (FNHL-1-4A-5/10)
  • truckingalong
    truckingalong Member Posts: 445 Member
    #8
    forme said:

    Thanks
    Hi John,
    Thanks so much. I did read your posts with Liz and wanted to jump in. I didn't because I was so tired and a bit overwhelmed. But you both are correct, there are so many drs that don't give a .... about the real person. I have always been the one who questions everything. Thats the cancer survivor/nurse in me.. But this time I was really surprised by their lack of common sense and even being on the same page. LAME. At least now I hope to be moving into a better situation. I have been waiting since June and thats long enough. I am ready to move forward and fight the battle head on. Thanks again for your constant support.
    Peaceful healing
    Lisha

    Yes I was like you
    I was also so tired - too tired to shop for doctors so I went to one wimpy doctor and wasted time being sent to inappropriate specialists then came back to this doctor with no answers and guess what she said? She said oh you are a mystery woman!! That was REAL LAME!!! Finally I had came to my sense to convince her to order me a lymph node biopsy! John was right on what he was saying and so was everyone else about how so much important we need to listen to ourselves as well as to ask for the right help to guide us to the right people to work with us. God bless you.

    With more peaceful healing,
    Liz

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