lost for word's...and for me that's bad!!!!! lol

vinny59
vinny59 Member Posts: 1,032
Hi everyone, I'm feeling quite numb right now. I had my weekly visit after Chemo, my counts are so lowwwwwww, no surprise. My Onc and I starting talking, I asked her that just because next Wednesday is my last treatment, what happens if the cancer is still there? She tell's me that she is sending me to a specialist at the Univ.off Penn that will attempt to harvest my stem cells. I agree that it is the proactive thing to do, but this seems like it's never going to end, she is worried that because I'm stage 4 and have bone marrow involvement that it might not go away. Then she started talking about if I don't go into remission, what's going to happen, it was all a blur from there. She is saying a P.E.T. may not be reliable and I may need another bone biopsy. Does anyone know protocol on this whole procedure? Sorry if I'm not making any sense! LOL Vinny

Comments

  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    LOST FOR WORDS
    Vinny,
    I know you are stage 4, but are you follicular? What grade are you? I go to my Onc. again pretty soon and I will get all the info I can. Hang in there. John
  • forme
    forme Member Posts: 1,161 Member
    Oh Vinny...
    Hi Vinny,
    Wow, that a lot of news to handle. I can understand if your emotions are all over the place right now. Breathe .... Try to take it one day at a time. I know that this may not always be possible, but try to not get to far ahead of yourself. I'm sure that you will have lots of people who have more info to offer you. I'm just a beginner in this part of the cancer world. Lots of cancer experience, just not a lot of lymphoma experience. Sure do wish we could gather round you and give you hugs and strength.. Just know that I would if I could..
    Always thinking of you..
    Lisha
  • vinny59
    vinny59 Member Posts: 1,032
    COBRA666 said:

    LOST FOR WORDS
    Vinny,
    I know you are stage 4, but are you follicular? What grade are you? I go to my Onc. again pretty soon and I will get all the info I can. Hang in there. John

    lost
    Thanks guy's, I'm cool........ John I have large B cell not follicular........ with bone marrow involvement...... Vinny
  • truckingalong
    truckingalong Member Posts: 445 Member
    another form of treatment
    Hope that you get the best for treatment- I heard that stem cell procedure can help a lot. Good luck,
    Liz
  • onlytoday
    onlytoday Member Posts: 609 Member

    another form of treatment
    Hope that you get the best for treatment- I heard that stem cell procedure can help a lot. Good luck,
    Liz

    another treatment
    Sorry you are having a rough time! I'll be praying for you Vinny that the specialist can get you the answers you need. The best to you.
  • vinny59
    vinny59 Member Posts: 1,032
    onlytoday said:

    another treatment
    Sorry you are having a rough time! I'll be praying for you Vinny that the specialist can get you the answers you need. The best to you.

    all is calm
    Thanks for all your thoughts, my brother said it best just celebrate that my last Chemo is this Wednesday and I will have some peace for awhile. I'm taking my own advice, a day at a time, and I have no control over anything except my attitude!!!! Take care Vinny
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    vinny59 said:

    all is calm
    Thanks for all your thoughts, my brother said it best just celebrate that my last Chemo is this Wednesday and I will have some peace for awhile. I'm taking my own advice, a day at a time, and I have no control over anything except my attitude!!!! Take care Vinny

    SCT
    Wow Vinny, I bet your head is swimming. Seems like we always have some goal to move toward. Just know you've about made it through a rough treatment and you can do this one day at a time.

    I go for treatment tomorrow morning. I don't want to go, but one step in front of the other is the best I can do. :)

    Take care,
    Beth
  • vinny59
    vinny59 Member Posts: 1,032
    dixiegirl said:

    SCT
    Wow Vinny, I bet your head is swimming. Seems like we always have some goal to move toward. Just know you've about made it through a rough treatment and you can do this one day at a time.

    I go for treatment tomorrow morning. I don't want to go, but one step in front of the other is the best I can do. :)

    Take care,
    Beth

    sct
    Thanks Beth, I 'm so sorry I can't remember are you doing stem cell???? Vinny
  • allmost60
    allmost60 Member Posts: 3,178
    vinny59 said:

    all is calm
    Thanks for all your thoughts, my brother said it best just celebrate that my last Chemo is this Wednesday and I will have some peace for awhile. I'm taking my own advice, a day at a time, and I have no control over anything except my attitude!!!! Take care Vinny

    Sorry Vinny
    Hi Vinny,
    I don't have a lick of information to share on harvesting stem cells. I tried for one hour to research for you, but after reading all of the different ways it is done, I found it just too technical for me to understand. You are a strong man Vinny and I know you will find a way to take the next steps your doctor decides on doing. I will be here every step of the way lending support for you. Your good attitude has helped me so much since I joined this group. I think of you every time I head to the kitchen to cook a meal. Hang in there, and keep us posted...we are "ALWAYS" here for you.....Sue
    I made chicken enchillada's for diner tonight and they turned out just yummy!
  • cathyp
    cathyp Member Posts: 376 Member
    allmost60 said:

    Sorry Vinny
    Hi Vinny,
    I don't have a lick of information to share on harvesting stem cells. I tried for one hour to research for you, but after reading all of the different ways it is done, I found it just too technical for me to understand. You are a strong man Vinny and I know you will find a way to take the next steps your doctor decides on doing. I will be here every step of the way lending support for you. Your good attitude has helped me so much since I joined this group. I think of you every time I head to the kitchen to cook a meal. Hang in there, and keep us posted...we are "ALWAYS" here for you.....Sue
    I made chicken enchillada's for diner tonight and they turned out just yummy!

    sending you strength and encouragement
    Vinny,

    I have been reading all your and fellow survivors' posts. I feel for you and wanted to add that I'm sending positive thoughts your way.

    Cathy
    HD 1989, 1994
    BC, IDC 2008
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    vinny59 said:

    sct
    Thanks Beth, I 'm so sorry I can't remember are you doing stem cell???? Vinny

    Not yet..
    No stem cell transplant yet. I think it's still down the road I hope. When I originally relapsed I talked to KUMed about it, but they recommended watch and wait, and plus I didn't like the doctor and wanted to stay with my onc.

    I am doing rituxan maintenance now. Probably for at least another year. I think I may talk to my doc tomorrow about zevalin or bexxar, but I don't know if the words will come out of my mouth or not LOL. All this stuff is so scary and such a pain in the a$$.

    Can you relate LOL?
  • vinny59
    vinny59 Member Posts: 1,032
    cathyp said:

    sending you strength and encouragement
    Vinny,

    I have been reading all your and fellow survivors' posts. I feel for you and wanted to add that I'm sending positive thoughts your way.

    Cathy
    HD 1989, 1994
    BC, IDC 2008

    thanks!
    thanks guy's for all your positive and encouraging words.... this battle is going to be on going...... a day at a time! Vinny
  • miss maggie
    miss maggie Member Posts: 929
    lost for words
    You may be lost for words, but please don't lose hope. Vinny - I can imagine the feeling you had when receiving the news. It's like the first time you heard about your DX. Hopefully as the days go by you will get a hold of yourself and maybe see the light at the end of the tunnel. At least your oncologist is not giving up. Sending you to a specialist that is. Hopefully he or she will be able to harvest your stem cells.
    Prayers your way. Maggie
  • merrywinner
    merrywinner Member Posts: 626
    Hey Vinny
    Boy that's a ton of info to try to process and I would do the same thing you did, just kind of mentally check out after just so much. Just to be clear let me ask, were you talking about what if's? That's when it really gets confusing with all the options. Much easier to find out what is and go from there. I will share what I know from my experience. I was told that if needed they would harvest stem cells and store them. My MD said this was from the blood, just like a blood draw. A PET cannot definitively be used to diagnosis bone marrow involvement that's why they need the biopsies. The PET picks up activity and since there is always bone marrow activity they cannot tell normal from abnormal. IF there are areas left after your last treatment then they will need to check the bone marrow. If you are clear after the last treatment they can safely assume the bone marrow is clear also as the chemo hits that area first. Beyond that I don't know too much about the actual Bone marrow transplant procedure other then it looms in the future, if needed, for most of us. Again I don't know if you were talking about what will be or what may be. My MD always prepared me for what could be,because I asked. But we spent most of our time dealing with what was happening at the moment. Hang in there as I know you will,you may just get pleasantly surprised. Prayers to you and hope this helped in some small way. Mary
  • vinny59
    vinny59 Member Posts: 1,032

    Hey Vinny
    Boy that's a ton of info to try to process and I would do the same thing you did, just kind of mentally check out after just so much. Just to be clear let me ask, were you talking about what if's? That's when it really gets confusing with all the options. Much easier to find out what is and go from there. I will share what I know from my experience. I was told that if needed they would harvest stem cells and store them. My MD said this was from the blood, just like a blood draw. A PET cannot definitively be used to diagnosis bone marrow involvement that's why they need the biopsies. The PET picks up activity and since there is always bone marrow activity they cannot tell normal from abnormal. IF there are areas left after your last treatment then they will need to check the bone marrow. If you are clear after the last treatment they can safely assume the bone marrow is clear also as the chemo hits that area first. Beyond that I don't know too much about the actual Bone marrow transplant procedure other then it looms in the future, if needed, for most of us. Again I don't know if you were talking about what will be or what may be. My MD always prepared me for what could be,because I asked. But we spent most of our time dealing with what was happening at the moment. Hang in there as I know you will,you may just get pleasantly surprised. Prayers to you and hope this helped in some small way. Mary

    thanks Mary
    You make a valid point, first they are going to draw blood to harvest the stem cells only if I'm clear, my last P.E.T. scan two weeks ago showed only a .2 reduction in the SUV of the Ilium bone. (pelvic). It's just going to be a waiting game, I need to know the what if's, it helps me get prepared and motivated for whats coming up next. Thanks again for the info.............. and yes it helped! Vinny
  • merrywinner
    merrywinner Member Posts: 626
    vinny59 said:

    thanks Mary
    You make a valid point, first they are going to draw blood to harvest the stem cells only if I'm clear, my last P.E.T. scan two weeks ago showed only a .2 reduction in the SUV of the Ilium bone. (pelvic). It's just going to be a waiting game, I need to know the what if's, it helps me get prepared and motivated for whats coming up next. Thanks again for the info.............. and yes it helped! Vinny

    Your welcome
    I totally get that. I always had to make sure that I had lots of cards left to be dealt. I may not care for all of those cards but there's an ace in there somewhere. lol Take care Mary