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jerzpilot
jerzpilot Member Posts: 39
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
First of all I am so glad I had a second diagnosis done since the first was misdiagnose from a large B cell (aggressive) type to an indolent type; so my dx was a FNHL. Blood work and the BMB was also done; the PET scan will be done on the 7th of Dec. and I will be having another date with the onc. on the 15th of Dec. as of now he suggested a W&W period til than. As for the BMB well it was one of the most painful procedures I have ever had. I am petrefied of neddles and to have this procedure done was a nightmare. Thanks for reading and God bless all.

Edwin

Comments

  • catwink22
    catwink22 Member Posts: 281
    #2
    Watch & wait
    Wow is right! How did they get that wrong? Not that it’s ever good news, but at least it’s better news. I’m in the watch & wait right now, I was diagnosed in August with Follicular NHL. I go for my second PET scan in Jan., which I am more nervous about then the first one because now I have a baseline to compare how fast or how slow (I hope) it is progressing. I totally agree with you about the BMB, I was sore for months after. It seems there are people who can breeze through it and Hurrah to the ones who do it not because they have to, but because they are donors! Happy Thanksgiving!
  • amybesunder
    amybesunder Member Posts: 15
    #3
    Watch & Wait
    Hi you two. I just went through my second CAT scan while doing the Watch & Wait Protocol. The week before was terribly stressful but I had no change from my diagnosis this August. More Watch & Wait ahead for me. I think this is actually a good thing. My oncologist feels we are not too far off from unlocking a permanent cure to fNHL. New treatments are coming online quickly and they are often less toxic then the treatments currently available. My hope is that when it comes time for us to treat, we get an option that leads to permanent remission and has no long term side effects.
  • jerzpilot
    jerzpilot Member Posts: 39
    #4
    amybesunder said:

    Watch & Wait
    Hi you two. I just went through my second CAT scan while doing the Watch & Wait Protocol. The week before was terribly stressful but I had no change from my diagnosis this August. More Watch & Wait ahead for me. I think this is actually a good thing. My oncologist feels we are not too far off from unlocking a permanent cure to fNHL. New treatments are coming online quickly and they are often less toxic then the treatments currently available. My hope is that when it comes time for us to treat, we get an option that leads to permanent remission and has no long term side effects.

    W&W
    What stage are you in catwink and amy? I am in at least stage 3 since is past my diaphram, once the BMB and the PET Scan reults comes back I will know for sure. Catwink and Amy please keep us posted on your PET Scan results and anyy other changes. Happy thanksgiving, God bless and take care.

    Edwin
  • amybesunder
    amybesunder Member Posts: 15
    #5
    jerzpilot said:

    W&W
    What stage are you in catwink and amy? I am in at least stage 3 since is past my diaphram, once the BMB and the PET Scan reults comes back I will know for sure. Catwink and Amy please keep us posted on your PET Scan results and anyy other changes. Happy thanksgiving, God bless and take care.

    Edwin

    I am stage 2 - possibly 3.
    I am stage 2 - possibly 3. It's hard to tell. The cat scan says two (evidence in my right and left abdomen) but there was an arm pit hot spot on the PET scan which could be a very small mass or just a reactive node. My BMB was clear and I had no side effects from the procedure.
  • catwink22
    catwink22 Member Posts: 281
    #6
    jerzpilot said:

    W&W
    What stage are you in catwink and amy? I am in at least stage 3 since is past my diaphram, once the BMB and the PET Scan reults comes back I will know for sure. Catwink and Amy please keep us posted on your PET Scan results and anyy other changes. Happy thanksgiving, God bless and take care.

    Edwin

    Stage 3
    Hi Ed & Amy! The pattern seems to fit. I am stage 3, lymph nodes above and below the diaphram, but grade 1 because no bone marrow or other organ involvement and no B symptoms. I have become a very deep sleeper, I don't hear ANYTHING at night, so I wonder sometimes if I am sleeping through the night sweats? Or is it just the paranoia that seems be a part of this process. There are days when I swear my nodes are getting bigger too, but then they go back to what they were(more paranoia?). That's a relief to hear that you haven't progresed since August. It definitely gives me hope. I try not to waste my energy with worrying about what might happen but easier said than done. I keep telling myself, I'll worry about it when it gets here and take my watch & wait while I have it. Please keep us updated on any information you may get about new treatments, I have not heard of one that would cure. An answer to all our prayers! Take Care and Good Luck! Cat
  • amybesunder
    amybesunder Member Posts: 15
    #7
    catwink22 said:

    Stage 3
    Hi Ed & Amy! The pattern seems to fit. I am stage 3, lymph nodes above and below the diaphram, but grade 1 because no bone marrow or other organ involvement and no B symptoms. I have become a very deep sleeper, I don't hear ANYTHING at night, so I wonder sometimes if I am sleeping through the night sweats? Or is it just the paranoia that seems be a part of this process. There are days when I swear my nodes are getting bigger too, but then they go back to what they were(more paranoia?). That's a relief to hear that you haven't progresed since August. It definitely gives me hope. I try not to waste my energy with worrying about what might happen but easier said than done. I keep telling myself, I'll worry about it when it gets here and take my watch & wait while I have it. Please keep us updated on any information you may get about new treatments, I have not heard of one that would cure. An answer to all our prayers! Take Care and Good Luck! Cat

    Watch & Wait
    I know the paranoia well. Every cold, bump, scrape or sore muscle makes me a little bit freaked out. But honestly, they are just your average colds, bumps, scrapes and sore muscles - not cancer. As for the night sweats, it is my understanding that you get pretty soaked and that you even have to change sheets. I asked my dr. as I also imagined I was sleeping through the sweats. I then believed I really was excessively itchy. Funny, the tricks your mind can play after reading about symptoms of fNHL.

    As for a cure, it is too soon to see if RIT (Bexxar or Zevalin) is a real cure but it seems to be getting good results. Stem Cell Transplant is a cure but of course the draw backs and potential side effects are still severe. My doc says we want to hold off on that route as long as we can. There are treatments being developed all the time and the last ten years has been radical for people with fNHL. I just know we are close to a cure.

    Hope you all had a great Thanksgiving.

    Amy
  • jerzpilot
    jerzpilot Member Posts: 39
    #8
    amybesunder said:

    Watch & Wait
    I know the paranoia well. Every cold, bump, scrape or sore muscle makes me a little bit freaked out. But honestly, they are just your average colds, bumps, scrapes and sore muscles - not cancer. As for the night sweats, it is my understanding that you get pretty soaked and that you even have to change sheets. I asked my dr. as I also imagined I was sleeping through the sweats. I then believed I really was excessively itchy. Funny, the tricks your mind can play after reading about symptoms of fNHL.

    As for a cure, it is too soon to see if RIT (Bexxar or Zevalin) is a real cure but it seems to be getting good results. Stem Cell Transplant is a cure but of course the draw backs and potential side effects are still severe. My doc says we want to hold off on that route as long as we can. There are treatments being developed all the time and the last ten years has been radical for people with fNHL. I just know we are close to a cure.

    Hope you all had a great Thanksgiving.

    Amy

    Sypmtoms
    I remember 2 years ago I would wake up in drenching night sweats so I would just take my covers off thinking I was just hot. Also, I did had a couple of rashes but since I was traveling I thought it was bed bugs from hotels; funny thinking back, I was more concern of bed bugs than anything else. My parents asked me why didn't I checked my self earlier but like the dr. said there's nothing to do unless the nodes get to a point where it starts affecting an organ or it becomes life threatning than we could start the rituxamab and chemo. He did mention the bone marrow and stem cell transplant but only as a last resort until than I would have to learn to live with this disease and hope for a cure.
    For now I am taking some herbal medecine and the pains that I felt a couple of weeks ago in my nodes and left heel are gone. I will be monitoring any changes, hopefully this stuff works :). Forgot to mention, the BMB hurt only on that day and slightly the following morning, I am fine with no pain as a matter of fact Saturday my son and I had a foot race and went dancing that night also. Take care and God bless.

    Ed
  • jerzpilot
    jerzpilot Member Posts: 39
    #9
    jerzpilot said:

    Sypmtoms
    I remember 2 years ago I would wake up in drenching night sweats so I would just take my covers off thinking I was just hot. Also, I did had a couple of rashes but since I was traveling I thought it was bed bugs from hotels; funny thinking back, I was more concern of bed bugs than anything else. My parents asked me why didn't I checked my self earlier but like the dr. said there's nothing to do unless the nodes get to a point where it starts affecting an organ or it becomes life threatning than we could start the rituxamab and chemo. He did mention the bone marrow and stem cell transplant but only as a last resort until than I would have to learn to live with this disease and hope for a cure.
    For now I am taking some herbal medecine and the pains that I felt a couple of weeks ago in my nodes and left heel are gone. I will be monitoring any changes, hopefully this stuff works :). Forgot to mention, the BMB hurt only on that day and slightly the following morning, I am fine with no pain as a matter of fact Saturday my son and I had a foot race and went dancing that night also. Take care and God bless.

    Ed

    Stage 4
    Went to the onc. yesterday to get all the results from my blood work, PET-scan and the BMB. All the levels in the blood are ok except for a high level of bile that is given off by the liver. The BMB showed that the disease is also in that part of the body and the PET-scan shows activity moslty in my groing area. He recommmeded a watch and wait for now until pain or a node would start affecting a vital organ. My next follow up is going to be in three months where we will see how much have this disease has davanced. Do any of you think I should start treatment soon or wait until pain settles in or even worst a node starts pressing a vital organ. Thanks for reading. God bless.

    Edwin
  • amybesunder
    amybesunder Member Posts: 15
    #10
    jerzpilot said:

    Stage 4
    Went to the onc. yesterday to get all the results from my blood work, PET-scan and the BMB. All the levels in the blood are ok except for a high level of bile that is given off by the liver. The BMB showed that the disease is also in that part of the body and the PET-scan shows activity moslty in my groing area. He recommmeded a watch and wait for now until pain or a node would start affecting a vital organ. My next follow up is going to be in three months where we will see how much have this disease has davanced. Do any of you think I should start treatment soon or wait until pain settles in or even worst a node starts pressing a vital organ. Thanks for reading. God bless.

    Edwin

    To W & Wor ...
    That's a hard question. There is a woman I know from another discussion board who did w & w for nine years before she saw a change. In that time, the treatment options have changed so much and for the better. It seems to me, if it doesn't make you crazy, you should continue with W & W. I do understand it is crazy making. I often want to do something about my fNHL so I can get on with my life. Also, you are getting check ups regularly so they should be able to detect growth of the cancer before it causes you pain.

    Amy
  • jerzpilot
    jerzpilot Member Posts: 39
    #11
    amybesunder said:

    To W & Wor ...
    That's a hard question. There is a woman I know from another discussion board who did w & w for nine years before she saw a change. In that time, the treatment options have changed so much and for the better. It seems to me, if it doesn't make you crazy, you should continue with W & W. I do understand it is crazy making. I often want to do something about my fNHL so I can get on with my life. Also, you are getting check ups regularly so they should be able to detect growth of the cancer before it causes you pain.

    Amy

    w&w
    Yeah I figured if it can't be cured and it's not bothering me might as well leave it alone until it does. :).

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