CLL and follicular and clueless

misujlh
misujlh Member Posts: 5
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Wow I am clueless as to what I have and what might be in my future. Jan 2012 felt sick went to emergency room was sent home told I had cancer or lymphoma (or?)and I should contact my GP. After weekS of blood work and scans (no pet scan) I was sent to oncologist who told me with a simple blood test and 15 min later I had lymphoma. After bmb I was told I had CLL and follicular which took a month to confirm because now the Cleveland clinic sent bmb to mayo clinic for second opinion. Yes the over achiever in me has 2 kinds both treated the same way good thing but how they play together is a big question. In April I started R-Chops 6 rounds 3 wk. apart. After round 5 pet scan revealed I am in remission but I wonder what they had to compare it with as they did not do one before the chemo started. Now and I am going for 2 years of R every 2 months started in August.
The clueless in me doesn’t know what stage should I? All I know is my spleen was enlarged double and it is in my bone marrow how much I do not know should I? I read talk of bone marrow transplant, Stem Cell transplant, Tumors, Radiation is my doctor not telling me the whole story all this is scaring me what does my future hold? From the get go I said no more surprises I want to know the good the bad and the ugly and if any of those happened ok no surprise I will deal better knowing, but now I feel clueless and scared
Tks for letting me ramble I am in the obsessed stage
KatMat wrote : unfortunately my husband's situation is complicated by the fact that he had CLL which transformed into the lymphoma
This is the closest I have come to anyone having both and he is having auto transplant what the heck

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2
    Both are manageable
    Sad that you have this sudden burden! However, both are manageable cancers and slow growing. Even though they are cancers, their indolent nature gives you your most valuable asset: time. Aggressive cancers must respond immediately or time runs out. And, time is what reveals additional treatments for your particular types of cancer. Had my cancer arrived a few months before it did, I would not be here. An experimental drug appeared at the time I relapsed, and was the only thing that offered any hope. That was 3 1/2 years ago, and I have had no evidence of disease since.

    PET scans are very costly and so are not frequently used. They are better to confirm remission than to confirm diagnosis. A CT scan is good enough, along with a biopsy, to confirm diagnosis. PETs show only hyper-metablic activity - which cancer is. Unfortunately, the body's healing process from common illness or injury is also hyper-metabolic, and PETs can show false positives in such cases.

    You definitely need a second opinion, from an oncologist that you are completely comfortable with. Both of these cancers are common enough that you can choose from numerous oncologists who will have experience with them. If I did not have a second opinion, I would have died in 2008. Just that simple.
  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #3
    po18guy said:

    Both are manageable
    Sad that you have this sudden burden! However, both are manageable cancers and slow growing. Even though they are cancers, their indolent nature gives you your most valuable asset: time. Aggressive cancers must respond immediately or time runs out. And, time is what reveals additional treatments for your particular types of cancer. Had my cancer arrived a few months before it did, I would not be here. An experimental drug appeared at the time I relapsed, and was the only thing that offered any hope. That was 3 1/2 years ago, and I have had no evidence of disease since.

    PET scans are very costly and so are not frequently used. They are better to confirm remission than to confirm diagnosis. A CT scan is good enough, along with a biopsy, to confirm diagnosis. PETs show only hyper-metablic activity - which cancer is. Unfortunately, the body's healing process from common illness or injury is also hyper-metabolic, and PETs can show false positives in such cases.

    You definitely need a second opinion, from an oncologist that you are completely comfortable with. Both of these cancers are common enough that you can choose from numerous oncologists who will have experience with them. If I did not have a second opinion, I would have died in 2008. Just that simple.

    Pet
    Mis,

    A PET scan need not be compared to any other scan; the results are evaluated (or can be) as a stand-alone test. As Po18 stated, they are very expensive, even when compared to a CT, and there should not be a problem with the fact that you did not receive a PET sooner.

    For all of his other points, I agree with everything Po wrote. Find a good oncologist whom you trust and get moving. My cancer was very indolent also (a form of HL), and the doc said that I may have had it for much over a year before diagnosis. You will find that YOU have to force the issue, very often, so YOU need to start creating a sense of urgency in the right doc.

    max
  • 1ladydiamond
    1ladydiamond Member Posts: 28
    #4
    Same as you
    Hi mine never showed up in my blood test they thought it was something else i have fnhl stage 4 had it in my speen but not remission still have stage 4 you can contact me on facebook with this email first_ladydiamond@yahoo we can talk so much to talk about wishing you a blessed day
  • 1ladydiamond
    1ladydiamond Member Posts: 28
    #5
    Stem cell therapy is hard
    Stem cell therapy is hard to get alot of doctors will not do it I tried
  • 1ladydiamond
    1ladydiamond Member Posts: 28
    #6
    Max Former Hodgkins Stage 3 said:

    Pet
    Mis,

    A PET scan need not be compared to any other scan; the results are evaluated (or can be) as a stand-alone test. As Po18 stated, they are very expensive, even when compared to a CT, and there should not be a problem with the fact that you did not receive a PET sooner.

    For all of his other points, I agree with everything Po wrote. Find a good oncologist whom you trust and get moving. My cancer was very indolent also (a form of HL), and the doc said that I may have had it for much over a year before diagnosis. You will find that YOU have to force the issue, very often, so YOU need to start creating a sense of urgency in the right doc.

    max

    Scan
    I had a chest scan and it did not show up but a abdominal scan showed up pet scan showed up in my chest blood test did not reveal anything FNHL stage 4 i am the exception so there are exceptions But having a great oncologist is important and you must trust your doctor
    Wishing everyone a blessed day

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