what a day

vinny59
vinny59 Member Posts: 1,036 Member
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I wish I could say I'm feeling better, been fighting this fever now for a week now. I refused to go into the hospital, I feel there is more germs there! LOL!I had to get blood cultures yesterday to rule out infection other then viral, it was interesting because they draw blood from both arms. Here I'm sweating like a pig because of the fever, and the poor girl drawing the blood is thinking that I am going to pass out! Little does she know us cancer patients get stuck so many times that it almost becomes almost routine. Went to University of Penn to talk about stem cell, and it was anything but that. The Onc.doc there tells me that I'm not a candidate for stem cell yet. I have more pressing issues. My original spinal tap showed suspicious cells, where my Onc. says it was clean. She then tells me that the PET scan should be followed by a MRI of the hip, plus another spinal tap, and another bone marrow biopsy. If the cancer is still there, she wants to do radiation. I hate the fact of the tap, awake during the procedures!! She also said the maintenance chemo is a waste of time, where my Doc feels that it will help get rid of any cells lingering around. They are in direct conflict with each other, it really bothers me. I'm hoping that this PET scan in a week will show its all gone and then none of this will matter. Not being negative but I highly doubt it. Just the course of things....... Thanks for letting me vent.... Vinny

Comments

  • onlytoday
    onlytoday Member Posts: 609 Member
    #2
    So Sorry
    Vinny,

    Sorry to hear about your lastest reports. When the doctors don't agree (which I experienced with my initial treatment plans) my insurance paid for a third opinion. Will yours? I went to Memorial Sloan Kettering as my third and they agreed with one of the docs and then I had a plan. Gosh, I am so sad to hear that you are going through all this. Probably even the thought of going to yet one more doc sounds a bit like hell at this point!

    Please know that you are in my thoughts and prayers. Keep that strong and inspiring spirit of yours. We all are pulling for you.
  • miss maggie
    miss maggie Member Posts: 929
    #3
    what a day
    What a downer. I agree, a third opinion is needed. I am sure it's not what you wanted to hear, not feeling so good with a fever, etc. Is there another doctor in the practice, or another oncologist close by? This way you wouldn't have to run around so much. Please get a prescription for Zanex, or some other medication to prepare for the spinal tap and bone marrow biopsy. I am so sorry for everything you are going through. I follow up on your posts, not answering most times. You will get through this. Do the best you can. You have lots of prayers going your way.

    Please take care. Maggie
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #4
    miss maggie said:

    what a day
    What a downer. I agree, a third opinion is needed. I am sure it's not what you wanted to hear, not feeling so good with a fever, etc. Is there another doctor in the practice, or another oncologist close by? This way you wouldn't have to run around so much. Please get a prescription for Zanex, or some other medication to prepare for the spinal tap and bone marrow biopsy. I am so sorry for everything you are going through. I follow up on your posts, not answering most times. You will get through this. Do the best you can. You have lots of prayers going your way.

    Please take care. Maggie

    thanks
    Thanks guy's, my PET is scheduled for next Wednesday, I think what I will do is see the results then go from there. Maggie I'm confused about the Zanex, they will not let me take any Meds the morning of...... Vinny
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #5
    What a day
    Vinny,
    I hate it when they can not agree. Seems like the left hand has no idea what the right hand is doing. Went thru that with my father and his Drs. a few years ago. It leaves the ones that need the treatment in limbo. They really need to communicate with each other more. Still trying to figure out why they are talking about stem cell if your counts are coming up and the chemo is working. I mean if thats why they are talking stem cell to begin with. Maybe you can shed some light on it. In the mean time I know your mind is going a thousand miles per hour. I know mine would be. Just keep us posted. John
  • yesyes2
    yesyes2 Member Posts: 591
    #6
    What a day is right!
    Hi Vinny,

    Wow, you really had a day, sounds very confusing and depressing to me. I always find that when I go to my specialist in lymphoma rather than my treating onco they are always much more negative. And always want a lot more tests and scans. I was suprised when your onc wanted to do maintenance as I have been told repeatedly by several oncs that maint. does not work on agressive lymphomas. It also was brought up at the LRF conference and the results for agressive nhl maint was just not there. They also said that good results using Bexar or Zevelan in trials on agressives nhl were not being seen. I agree that waiting until your PET is a good idea. But a third opinion from another major medical center like Sloan or Dana Farber would be in order. A local onc/hemo would not have the experence that a major med center would have. Just remember that knowledge is golden.

    Just wish your fever would go down. Praying for good results.
    Leslie
  • yesyes2
    yesyes2 Member Posts: 591
    #7
    COBRA666 said:

    What a day
    Vinny,
    I hate it when they can not agree. Seems like the left hand has no idea what the right hand is doing. Went thru that with my father and his Drs. a few years ago. It leaves the ones that need the treatment in limbo. They really need to communicate with each other more. Still trying to figure out why they are talking about stem cell if your counts are coming up and the chemo is working. I mean if thats why they are talking stem cell to begin with. Maybe you can shed some light on it. In the mean time I know your mind is going a thousand miles per hour. I know mine would be. Just keep us posted. John

    Questios
    John,

    I was thinking that the reason for collecting stem cells would be to save for a stem cell transplant. You would need to be in remission I believe for the cell to be used as other wise you would be reimplanting cancer cells. I don't think Vinny's consult had anything to do with the low blood counts, but only Vinny can really answer that. I love that your always asking question and gaining information.
    Leslie
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #8
    yesyes2 said:

    What a day is right!
    Hi Vinny,

    Wow, you really had a day, sounds very confusing and depressing to me. I always find that when I go to my specialist in lymphoma rather than my treating onco they are always much more negative. And always want a lot more tests and scans. I was suprised when your onc wanted to do maintenance as I have been told repeatedly by several oncs that maint. does not work on agressive lymphomas. It also was brought up at the LRF conference and the results for agressive nhl maint was just not there. They also said that good results using Bexar or Zevelan in trials on agressives nhl were not being seen. I agree that waiting until your PET is a good idea. But a third opinion from another major medical center like Sloan or Dana Farber would be in order. A local onc/hemo would not have the experence that a major med center would have. Just remember that knowledge is golden.

    Just wish your fever would go down. Praying for good results.
    Leslie

    hey guy's John Leslie
    Still have the fever 101.3 been crazy, horrible cough, if I would not know any better I would think that these are symptoms that the lymphoma is still with me. John, Leslie was dead on about the reason for the stem cell consultation. It was more of a what if.....Stem cell transplantation involves removing and replacing stem cells, which are produced in the bone marrow. That's where my cancer still is. Vinny
  • yesyes2
    yesyes2 Member Posts: 591
    #9
    But Better Maybe
    Vinny,
    Sounds like your fever is down a little. Hope it is getting better. Some where I read something about low blood counts being connected to fevers, but I don't remember where or what it all could mean. Dang, love that chemo brain of mine, LOL. Here's to hoping for clean bone marrow and PET. Doctor's have been know to be wrong, lets hope yours are in that matter. Try to relax, rest and have a joy filled weekend.
    Leslie
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #10
    Makes me sad
    Hi Vinny,
    Hearing all of this makes me sad. Sounds like alot of informations for you to process when your feeling so lousy. I'll keep good positive thoughts and lots of prayers for the PET scan to be good. Take it slow and easy Vinny...wish that crumby fever would take a hike, once and for all!!! Always thinking of you...Sue
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #11
    allmost60 said:

    Makes me sad
    Hi Vinny,
    Hearing all of this makes me sad. Sounds like alot of informations for you to process when your feeling so lousy. I'll keep good positive thoughts and lots of prayers for the PET scan to be good. Take it slow and easy Vinny...wish that crumby fever would take a hike, once and for all!!! Always thinking of you...Sue

    thanks
    Thanks guys! what ever happens........ happens! Poetic Huh! LOL
  • miss maggie
    miss maggie Member Posts: 929
    #12
    vinny59 said:

    thanks
    Thanks guy's, my PET is scheduled for next Wednesday, I think what I will do is see the results then go from there. Maggie I'm confused about the Zanex, they will not let me take any Meds the morning of...... Vinny

    medication
    Vinnie, are you sure they won't allow some medication? I am not a doctor, but I would certainly check again. That is, about some medication to calm you down. I am the very worse patient. When I had my bone marrow biopsy, they gave 10 mg of something. Then an injection to the site. Actually I find Zanex does not work for me that good. My regular doctor was kind enough to give me a prescription for Valium. 10 pills only. He wants me to have in the event of any up and coming tests that I might get worked up about. No, I am not a pill person. I have never taken this kind of medication before. I see no reason why I would want to suffer mentally about any up and coming procedure. Again, I am not a doctor. For me, I would insist on something to calm me down. You have gone through enough. Please post what the doctor says on this matter. You are in my thoughts. Stay strong.
    Maggie
  • miss maggie
    miss maggie Member Posts: 929
    #13
    vinny59 said:

    thanks
    Thanks guy's, my PET is scheduled for next Wednesday, I think what I will do is see the results then go from there. Maggie I'm confused about the Zanex, they will not let me take any Meds the morning of...... Vinny

    I agree
    I have no idea where you live. Do you live close to NYC. If you do, get to Sloan Kettering, or Columbia Pres. Sloan Kettering does not take all insurances. But, you can get permission from your insurance company for a third opinion. Columbia Pres is excellent also. I just went to a seminar a few weeks ago. Any problem that would come up, I think I would go to Columbia Pres. The only down side to all this, you are not feeling well and you would have to gather all your records. A chore for a person not feeling well.

    Good luck Maggie
  • yesyes2
    yesyes2 Member Posts: 591
    #14
    vinny59 said:

    thanks
    Thanks guys! what ever happens........ happens! Poetic Huh! LOL

    Right On
    Your so right Vinny. When ever I have scans done I always say, whatever is is. Guess I'm just trying to appease my fears, but I'm still just as scared. And I know I can't change anything.
    Leslie

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