Nervous about upcoming appt results

I was diagnosed 5/5/10 with stage IV follicular NHL. 6 rounds of R-chop only got me into "partial remission". I then did a clinical trial drug (Bexxar) in 11/10. I was told I would have a CT/PET scan in early February to see if that had worked. Orders got messed up and February came and went with no tests scheduled. Then for one month (March) I did not have medical insurance. Finally things are straightened out. I had my PET/CT scans 4/11. I will have a bone marrow biopsy 4/12 and then I get results on 4/13. I am scared to death. I went alone to my appt in October after the chemo ending, fully expecting to hear the words total remission.

I was stunned when the dr gave me the report that I was not in remission. The reason I had to go alone to that appt was because my husband was in a care facility recovering from a devastating accident he had on 9/11 - he fell off a ladder and shattered his right heel and could not walk. He only came home in March. He was out of our home for 6 months. He is recovering, but not walking unaided yet.

He and our daughter (age 20) will be with me at my appt on the 13th. What scares me is what if I am not in remission yet? I am still having night sweats and exhaustion. I had several very large tumors, and I could feel one in my back. I joked about that one before my diagnosis to my husband that it was probably cancer. And it was. I can still feel it. It is way smaller - but still there.

My family has been through so much and now becuase of my husbands accident, he has been forced to retire and we are currently trying to sell our home as we can not keep it anymore (trying to avoid foreclosure). I run a daycare and have cut back on kids - but still managed to work all summer, only taking off the actual day I had chemo. But even with me working through all my cancer treatments, it is not enough to keep our home.Selling the home is a choice we have made together - it is just that the packing and all is on me since hubby can not walk. I am so overwhelmed - I have not even attempted to start packing.

I just feel so overwhelmed, scared, lost, depressed - I did not feel this way all through this ordeal. I suppose because I was working, dealing with appts and then when my husband got hurt, from then on, I was also doing everything on my own. OUr daughter is in college and works - but does not drive, so I had to drive her and was also working. I never had time I guess to be upset. Now I can not sleep and I can not focus and I can not stop being scared.

The only person I have ever known with NHL did not ever get to remission. She passed away 3 months into her treatment. If the first round of treatment did not put me into remission, can I expect that the Bexxar (I had one doseon 11/17) did? After the R-CHOP, my bone marrow came back clear and my neck was clear. I still had tumors in my armpits, chest, abdomen, groin, spleen and back. Am I expecting a miracle to be in remission now??

Comments

  • miss maggie
    miss maggie Member Posts: 929
    Nut Lady
    Dear ?????? Do you have a name? I hate to address this post Dear Nut Lady.

    I am so sorry you have so many things on your plate. Please try and not think of that person that passed away. All of us on this board are still aroung. Depression, anxiety, scary, is all normal considering everything that is going on in your life. Try and take one problem at a time. Somehow, things have a way of working out.

    I am sorry you are now faced with moving from your home. It can't be easy. Again, do one thing in the house at a time. It can be overwelming thinking of everything at once that has to be done. Two years ago I threw out so much I had saved over the years in my house. Two years later, I added the same amount I threw out.

    I hope eventually your husband will recover and be able to be there for you.

    Stay strong. So glad you posted your thoughts to us. Love Maggie remission Jan 2011
  • Nut Lady
    Nut Lady Member Posts: 4

    Nut Lady
    Dear ?????? Do you have a name? I hate to address this post Dear Nut Lady.

    I am so sorry you have so many things on your plate. Please try and not think of that person that passed away. All of us on this board are still aroung. Depression, anxiety, scary, is all normal considering everything that is going on in your life. Try and take one problem at a time. Somehow, things have a way of working out.

    I am sorry you are now faced with moving from your home. It can't be easy. Again, do one thing in the house at a time. It can be overwelming thinking of everything at once that has to be done. Two years ago I threw out so much I had saved over the years in my house. Two years later, I added the same amount I threw out.

    I hope eventually your husband will recover and be able to be there for you.

    Stay strong. So glad you posted your thoughts to us. Love Maggie remission Jan 2011

    Why I am called Nut Lady
    Nut Lady is a very loved name all my daycare kids call me. It was given to me by one of my precious little ones years ago - but I guess to a group of adults it sounds not so endearing! LOL! My name is April - Nut Lady is my screen name for so many things and is automatic for me when I sign up for something :) I will change it here for y'all. I was given this nickname because I always fed the squirrels and they would follow me and one came into my house one day looking for his peanuts....one of my daycare boys said, "Hey Nut Lady, you have a customer..." and I have been Nut Lady since!

    Thank you for your advice. I am new at having cancer, new at joining a "support" group....I am just in a whole new season of my life. I turned 50 in April 2010...and my motto was 50 is going to fit just fine. I was at a great place, happy, I thought healthy....and really excited to turn 50. Twelve days later I was told I had cancer. I had no clue at all - did not even suspect cancer so I was totally thrown for a loop. 50 has NOT been as much fun as I was expecting!!
  • yesyes2
    yesyes2 Member Posts: 591
    Nut Lady said:

    Why I am called Nut Lady
    Nut Lady is a very loved name all my daycare kids call me. It was given to me by one of my precious little ones years ago - but I guess to a group of adults it sounds not so endearing! LOL! My name is April - Nut Lady is my screen name for so many things and is automatic for me when I sign up for something :) I will change it here for y'all. I was given this nickname because I always fed the squirrels and they would follow me and one came into my house one day looking for his peanuts....one of my daycare boys said, "Hey Nut Lady, you have a customer..." and I have been Nut Lady since!

    Thank you for your advice. I am new at having cancer, new at joining a "support" group....I am just in a whole new season of my life. I turned 50 in April 2010...and my motto was 50 is going to fit just fine. I was at a great place, happy, I thought healthy....and really excited to turn 50. Twelve days later I was told I had cancer. I had no clue at all - did not even suspect cancer so I was totally thrown for a loop. 50 has NOT been as much fun as I was expecting!!

    Welcome
    Hi Nut Lady,

    And welcome to the club you hoped you'd never have to join. But we are so glad you have found us and we will all be here for you. I would be happy to call you Nut Lady or April, whichever you prefer. My name is Leslie and I've been around this board for a few years now. I am currently in remission for the second time from an agressive very rare form of NHL, B and T cell. I finished 6 RCHOP on 2/15/10.

    Wow, you certainly have had your share of troubles. A Cancer diagnosis is bad enough but also dealing with your husband's health problems and having to sell your home and all seems terribly unfair. I am so sorry you are dealing with all this at one time.

    Let's hope that when you see your Onc that he will have some positive news for you. Bexxar is supposed to be very powerful and is very promising for fNHL so maybe it zapped all those nasty nodes. And what's wrong with hoping for miracles?

    Please know that you have every right and reason to feel exactly as you do. And we will all be here to support you in anyway you would like.

    Please take it easy today after the bone marrow biopsy. And know that prayers and good wishes are being sent your way. Please let us know what your Onc has to say.

    Blessings to you,
    Leslie
  • allmost60
    allmost60 Member Posts: 3,178
    It's tough...
    Hi April,
    I have indolent FNHL-Grade2-Stage3(no bone involvement)TypeA(non-symptomatic). I was diagnosed last June. I finished 6 rounds of CVP-R chemo in Dec, and like you, I didn't quite reach remission, but was considered stable. I started maint Rituxan in Feb, but had to cancel my 2nd dose yesterday due to some swelling in my left underarm and left side of my neck. Tomorrow I'm getting new scans done to see if anything new is going on. I'll get my results next Monday when I see my Onc again. You still have some testing to be done, so try to be as patient as possible, which is so hard to do...believe me..we all know the stress from testing and waiting for results. It can be mind numbing! From what I've been told, there is more than one way to skin this nasty cat..(NHL) and many of us are walking the same path as you right now. Keep coming here and we will give you all the support and love you will need. Please let us know the results of your scans and BMB. This sure has been a whirlwind week for you! Hang in there...Love...Sue, age 60.
  • Michele23
    Michele23 Member Posts: 168
    After R-Chop why didn't they zap the tumors with Radiation or Rituxan Maint.As you may or may not know Follicular NHL is a tough one to put in a lengthy remission.How do you know you still have tumors in all those areas?Not well versed on Bexxar but I have been in touch with people who had it.Thought it was more then 1 treatment?Anyway are you having symptoms?That would be a good thing that the bone marrow was clear.Stress is not good for cancer and looks like you have plenty of that in your life.The waiting game is a tough one even for me since I've been at this since 1995.Distraction is best while waiting on results.Try and do some packing to keep yourself busy.Keep us posted and good luck tomorrow.Michele Dx 1995 low grade Follicular stage3 presently doing Treanda/Rituxan age56
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    Nut Lady said:

    Why I am called Nut Lady
    Nut Lady is a very loved name all my daycare kids call me. It was given to me by one of my precious little ones years ago - but I guess to a group of adults it sounds not so endearing! LOL! My name is April - Nut Lady is my screen name for so many things and is automatic for me when I sign up for something :) I will change it here for y'all. I was given this nickname because I always fed the squirrels and they would follow me and one came into my house one day looking for his peanuts....one of my daycare boys said, "Hey Nut Lady, you have a customer..." and I have been Nut Lady since!

    Thank you for your advice. I am new at having cancer, new at joining a "support" group....I am just in a whole new season of my life. I turned 50 in April 2010...and my motto was 50 is going to fit just fine. I was at a great place, happy, I thought healthy....and really excited to turn 50. Twelve days later I was told I had cancer. I had no clue at all - did not even suspect cancer so I was totally thrown for a loop. 50 has NOT been as much fun as I was expecting!!

    April
    I had a pet squirrel a couple of years ago. Called her Pepper. She was spoiled rotten. Would not eat peanuts,but loved cashews,brazil nuts and macadamian nuts. Liked oreo cookies too. She was so sweet to me but would bite everyone else. Anyway we all know how it is waiting for the results. You can worry yourself sick about it and most of us probably do, but there is so much that can be done with our type of cancer now. The only real worry is what will they do and how will I deal with it. Try not to let it get to you if that is possible til you know all the facts. We will be here for you when you need us. John(FNHL-1-4A-5/10)
  • JoanieP
    JoanieP Member Posts: 573
    So sorry
    Hi April, I am so sorry you have had so many difficult things happen in your family. It is very difficult not to worry and feel like you can not handle this. There are wonderful people on this sight that are caring and loving and will be there for you. I went through my NHL stage 3 Follicular with God's strength not mine. I prayed a lot for peace. I knew I could not handle the fear on my own. I am married to a wonderful man but this cancer is bigger than we are. I wish I could help you pack. I am one of those crazy people who love to organize and pack:) Please try to take things in little steps. Wait for the Dr. to tell you the plan and then you will have a direction. There are many treatments for this disease we have. I am sure you have friends who could help you pack, sort etc. Don't feel bad about asking others to help. When you are on the other side of this nightmare and you will be, you will be helping others. Take care. God bless you and hold you in the palm of his hand. Joanie
  • Nut Lady
    Nut Lady Member Posts: 4
    JoanieP said:

    So sorry
    Hi April, I am so sorry you have had so many difficult things happen in your family. It is very difficult not to worry and feel like you can not handle this. There are wonderful people on this sight that are caring and loving and will be there for you. I went through my NHL stage 3 Follicular with God's strength not mine. I prayed a lot for peace. I knew I could not handle the fear on my own. I am married to a wonderful man but this cancer is bigger than we are. I wish I could help you pack. I am one of those crazy people who love to organize and pack:) Please try to take things in little steps. Wait for the Dr. to tell you the plan and then you will have a direction. There are many treatments for this disease we have. I am sure you have friends who could help you pack, sort etc. Don't feel bad about asking others to help. When you are on the other side of this nightmare and you will be, you will be helping others. Take care. God bless you and hold you in the palm of his hand. Joanie

    The news was pretty good today when I saw my Oncologist. He said the PET scan looked great, no "hot" spots - which I take to mean no cancer. I have never had a PET scan before. He said that there are still tumors - chest, abdomen and back - but they have all shrunk signifigantly enough that he is calling this "total remission". I was stunned when he told me that. He did not have the bone marrow results back yet.

    He said my WBC was low - and was not sure why. Gave me a shot of neupogen (sp?) and I have to go back next week for another blood count. Wants to start maintanace rituxin on 6/15 - every 3 months for 2 yrs.

    He told me that he hopes to keep me in remission for a long time - but to be prepared that sometimes remission only lasts a short time. I'll take what I can get.

    At home tonight reading the PET and CT scan though, I see "mucosal thickening in the bilateral ethmoid sinuses, concerning for sinusitis. Clinical correlation recommended" - I assume that to mean I may have a sinus infection - which is very likely as I have been sick for weeks with cough, congestion, facial pain. I told him ALL of those symptoms before I knew what this report said - and he just looked in my throat today and said I looked fine. Then I come home and read this and wonder....maybe I have an infection and maybe that is why the WBC is low?

    I am wondering if he did not read this whole report??? I might have stopped at the first line that said no evidence of cancer too...but I didn't! I wonder if my dr did!! LOL!

    I don't think the magnitude of the good news has sunk in yet - still feeling overwhelmed and depressed. Hoping I feel better tomorrow. It was a long week already and I am so tired...I hope that is all that is the matter with me right now.
  • miss maggie
    miss maggie Member Posts: 929
    Nut Lady said:

    The news was pretty good today when I saw my Oncologist. He said the PET scan looked great, no "hot" spots - which I take to mean no cancer. I have never had a PET scan before. He said that there are still tumors - chest, abdomen and back - but they have all shrunk signifigantly enough that he is calling this "total remission". I was stunned when he told me that. He did not have the bone marrow results back yet.

    He said my WBC was low - and was not sure why. Gave me a shot of neupogen (sp?) and I have to go back next week for another blood count. Wants to start maintanace rituxin on 6/15 - every 3 months for 2 yrs.

    He told me that he hopes to keep me in remission for a long time - but to be prepared that sometimes remission only lasts a short time. I'll take what I can get.

    At home tonight reading the PET and CT scan though, I see "mucosal thickening in the bilateral ethmoid sinuses, concerning for sinusitis. Clinical correlation recommended" - I assume that to mean I may have a sinus infection - which is very likely as I have been sick for weeks with cough, congestion, facial pain. I told him ALL of those symptoms before I knew what this report said - and he just looked in my throat today and said I looked fine. Then I come home and read this and wonder....maybe I have an infection and maybe that is why the WBC is low?

    I am wondering if he did not read this whole report??? I might have stopped at the first line that said no evidence of cancer too...but I didn't! I wonder if my dr did!! LOL!

    I don't think the magnitude of the good news has sunk in yet - still feeling overwhelmed and depressed. Hoping I feel better tomorrow. It was a long week already and I am so tired...I hope that is all that is the matter with me right now.

    Nut Lady or April
    Dear April,

    One step at the time. First step, great news. Please no depression. The news is good.

    Love Maggie