Onc appointment

onlytoday
onlytoday Member Posts: 609 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi All-

Have oncologist appointment in one week. Have fatigue,swollen nodes and leg bruising, and intestinal symptoms. When I saw him 2 months ago he said I need treatment and said he would probably recommend Treanda. The problem is they cannot treat me until my intestinal bacterial overgrowth problem is cleared up. I've had 3 rounds of mega antibiotics with no change in symptoms. Gastro doc is to call me today with his next plan. I also wonder (with great fear) whether the BEAST (aka: NHL) has moved into the small intestine! Maybe THAT is part of my symptoms... We know it's in my stomach and of course the small intestine is right there and is sort of a dead zone as far as testing- very hard to get to! They've tried everything they can (short of surgery) and have not found evidence of it. So part of me is thinking - go ahead and treat already!! and then the other part of me is not so eager...

Thanks for listening. Sometimes just venting helps. I like to always have a plan( I make lists for everything) and right now it all feels confused RE: my treatment plan. No ones fault- it just is the way it is right now.

In a week I'll know more and will keep you posted.

BIG hugs and prayers to all,

Donna

Comments

  • jimwins
    jimwins Member Posts: 2,107
    #2
    Adding to your list :)
    To get to my small intestine, they did a special kind of Endoscopy that
    allowed them to go further. It allowed them to view the problem area
    and get specimens. I don't recall what they called the procedure.

    Add to your "TO DO" list:

    1. Hug myself.
    2. Hug others.
    3. Laugh as much as I can.
    4. Try not to worry too much.
    5. If I win the mega lottery, share with "jimwins" from the cancer
    survivors network ;).

    Thanks for sharing and keep us posted.



    Cosmic hugs,

    Jim
  • anliperez915
    anliperez915 Member Posts: 770
    #3
    Venting
    Hi Donna,
    Go ahead and vent sweetie, it does really help to just talk about it and get it out of your system! Being guilty of it myself, it just brings a lot of comfort to know we can come here and talk about it without having someone tell us otherwise. Hope your problems get resolved soon and you start your treatment so you can get rid of the big C! I'm keeping you in my thoughts and prayers. (((Hugs)))

    Sincerely,
    Liz
  • onlytoday
    onlytoday Member Posts: 609 Member
    #4
    jimwins said:

    Adding to your list :)
    To get to my small intestine, they did a special kind of Endoscopy that
    allowed them to go further. It allowed them to view the problem area
    and get specimens. I don't recall what they called the procedure.

    Add to your "TO DO" list:

    1. Hug myself.
    2. Hug others.
    3. Laugh as much as I can.
    4. Try not to worry too much.
    5. If I win the mega lottery, share with "jimwins" from the cancer
    survivors network ;).

    Thanks for sharing and keep us posted.



    Cosmic hugs,

    Jim

    :)
    Jim

    Hugs to you too buddy. Thanks for the laugh!

    Donna
  • onlytoday
    onlytoday Member Posts: 609 Member
    #5
    anliperez915 said:

    Venting
    Hi Donna,
    Go ahead and vent sweetie, it does really help to just talk about it and get it out of your system! Being guilty of it myself, it just brings a lot of comfort to know we can come here and talk about it without having someone tell us otherwise. Hope your problems get resolved soon and you start your treatment so you can get rid of the big C! I'm keeping you in my thoughts and prayers. (((Hugs)))

    Sincerely,
    Liz

    Thanks
    Liz,
    Thanks for your reassuring words. There are days when this all seems manageable and then other times when maybe not so much! My gastro doc is away and now the other docs in the practice decided he needs to call me next week to talk to me. Don't know what that means but maybe they want to do a special scope like Jim referred to. I guess I'll find out when he calls. Meanwhile they put me back on the super-antibiotic.

    Thanks for the prayers and hugs. Same to you!!

    Donna
  • forme
    forme Member Posts: 1,161 Member
    #6
    Answers
    Hi Donna

    So sorry that you are still struggling with such daunting issues. This has been a long haul for you. Gosh, I sure do wish that you could find some easy relief. It must be so hard to take so many antibiotics. Lets hope that this time does the trick.

    I'll be thinking all good and positive thoughts for your upcoming Onc appointment. Waiting is hard if your not feeling well.

    I have not been posting much, but wanted you to know that I'm right along side you in spirit.

    Take care and big hugs,
    Lisha
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #7
    Stressful time!
    Hi Donna,
    It's a stressful time indeed for you and I'm so sorry your in this limbo satge. Hopefully next week you will get a clear plan layed out for you. I had my Onc appointment today to go over my scan results and was so relieved by the time he sent me back to the chemo clinic to get my R infusion. When I got there this morning I had a list of questions a mile long. I'm like you...make lists and question EVERY detail of whats happening with my body. My copy of the scan was filled with hi-lighted sections that I wanted explanations for. He looked at my copy and kind of laughed and said...."looks like we have explaining to do". After we talked everything out I was very relieved and satisfied that all of my concerns were answered., and there were no new problems for me to have to deal with..."whew"! I was surprised however to hear that my lab work will not indicate a change in my cancer..such as a recurrance. He said the only way we will know if it's back is when new lumps appear, or when my over-all health shows symptoms...night swets....chills...weight loss...extreme fatigue, etc. He said if I ever start feeling bad, he would then call for another CT scan which would show new tumors or activity. For some reason I thought my blood work would show cancer activity, but he said "No"....labs just shows how the medication(R) is doing in my blood stream. Anyways...I feel pretty good and will just continue to keep good positive thoughts that things stay as good as they are now. I will keep you in my prayers dear Donna and be thinking good positive thoughts for you. Oh, and by the way...you can add me to the list if you should win the lottery...no fair for Jim to be the only one...ha!ha! Take care sweetie and know you are loved and always in my thoughts and prayers...as is EVERYONE in our little family here. Much love...Sue (FNHL-2-3A-6/10)
    P.S. I posted a new picture of Lizzy in her Easter Dress on my expression page. Hard to believe she will be a year old on May 9th! Where the heck does the time go??!!! :)
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #8
    planning
    Hi Donna, nothing wrong with planning, you must become your biggest advocate, Doctors just have way to many patients to remember everything pertaining to you. Praying for good news next week, Vinny
  • onlytoday
    onlytoday Member Posts: 609 Member
    #9
    vinny59 said:

    planning
    Hi Donna, nothing wrong with planning, you must become your biggest advocate, Doctors just have way to many patients to remember everything pertaining to you. Praying for good news next week, Vinny

    Thanks guys
    Sue,Lisha,Vinny,

    Thanks so much for your caring and encouragement! It means so much!

    Vinny I have been learning how to be my best advocate over this journey. Amazing isn't it? I often think of those that CANNOT advocate for themselves and how different the outcome can be under those circumstances. My daughter and I just had this conversation again yesterday and were talking about how many patients these talented doctors see in one day alone and how we have to remind them who we are!

    Thanks again- I will keep you all posted.

    Hugs and prayers to all for healing,
    Donna
  • miss maggie
    miss maggie Member Posts: 929
    #10
    onlytoday said:

    Thanks
    Liz,
    Thanks for your reassuring words. There are days when this all seems manageable and then other times when maybe not so much! My gastro doc is away and now the other docs in the practice decided he needs to call me next week to talk to me. Don't know what that means but maybe they want to do a special scope like Jim referred to. I guess I'll find out when he calls. Meanwhile they put me back on the super-antibiotic.

    Thanks for the prayers and hugs. Same to you!!

    Donna

    Strength
    Dear Donna,

    I am so sorry with all the anti-biotics the bacteria (intestinal bacterial overgrowth problem) hasn't been resolved. I do know some bacteria are harder to erase than
    other bacteria. My friend had bacterial pneumonia last year. Even when she was
    released from the hospital, there were still traces of bacteria. It took about 10 months
    for her to feel normal and the bacteria to go away.

    I know when you speak with the doctor next week, you will bring up the scope that Jim
    mentioned. Or perhaps the gastro doctor will have another plan. I know you are very
    up to date, and see the best of the best doctors. Was this gastro doctor referred to
    you by your oncologist at Sloan?

    I can just imagine you worrying about the NHL growing without treatment. Please try
    and stay positive. I know how hard that will be.

    Donna, sweet Donna, I think of you often and pray for you. I am so sorry for all you are
    going through. Who would of thought last year????

    Love you and please keep us posted. Maggie
  • onlytoday
    onlytoday Member Posts: 609 Member
    #11
    miss maggie said:

    Strength
    Dear Donna,

    I am so sorry with all the anti-biotics the bacteria (intestinal bacterial overgrowth problem) hasn't been resolved. I do know some bacteria are harder to erase than
    other bacteria. My friend had bacterial pneumonia last year. Even when she was
    released from the hospital, there were still traces of bacteria. It took about 10 months
    for her to feel normal and the bacteria to go away.

    I know when you speak with the doctor next week, you will bring up the scope that Jim
    mentioned. Or perhaps the gastro doctor will have another plan. I know you are very
    up to date, and see the best of the best doctors. Was this gastro doctor referred to
    you by your oncologist at Sloan?

    I can just imagine you worrying about the NHL growing without treatment. Please try
    and stay positive. I know how hard that will be.

    Donna, sweet Donna, I think of you often and pray for you. I am so sorry for all you are
    going through. Who would of thought last year????

    Love you and please keep us posted. Maggie

    Thanks!
    Miss Maggie,

    Thank you so much for your kind and loving thoughts. I am very ready for my conversation with the gastro doc (I was referred to him by Jefferson) and for my oncologist appointment. I'm sure it will be a very informative day! My daughter will be on speaker phone with us during the oncologist appointment which always helps to make sure I get the story straight! I'm thankful that my daughter wants to help in this way. My oncologist at Sloan is amazing and welcomes that type of involvement.

    So thanks again. Don't know what I would do without you all!

    Love and hugs,
    Donna

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