Test results

Silver02
Silver02 Member Posts: 14
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hello everyone,

I just hit my 50 day post my autologous transplant mark yay. I was looking at my previous test results from when I was hospitalized for the transplant and I found a number of X-rays that said I might be having some tumors/treated disease in my lungs (it wasn't quite accurate because as you know X-rays are not specific for cancer). I scrolled down further and found a C-RP test which is a protein that marks inflammation in the body due to a variety of reasons from autoimmune disease to infection to cancer. My C-RP was over the roof, it was at 125 mg/L, the normal range being 10 mg/L or less. This instantly worried me because when I was first diagnosed with Hodgkins lymphoma my C-RP was closer to 200 mg/L

I read that C-RP increases due to tissue damage and back then I was on high dose chemotherapy for 9 days. I recived Vorinostat, Gemcetabine, Busalfan, Melphalan. I had very bad mouth sores, diarrhe, fatigue, nausea and vomiting. I was thinking that maybe my C-RP was increased due to tissue damage caused by chemotherapy. I don't know if my hypothesis is actually true or I'm just trying to put this matter at ease.

The transplant was very hard on me both physically and mentally and I really don't want it to be a waste. I don't know what to think about what I just found when it comes to my results. I asked to see the doctor and have a conversation with him regarding this matter, but until then, do you have any thoughts regarding those findings?

PS. my PET scan pre transplant showed that I was in remission however, I had one nodule in my lung that lit up which my doctor disregarded as possible inflammation rather than lymphoma.

Treatemt : ABVD for 5 months, progessed while on chemo, switched to ICE for 2 month, disease still progressing, changed to Imunnotherapy for 5 months, had complete response and declared in remission and ready for transplant.

Stage 4 classic hodgkins lymphoma of extranodal site (lungs and bone) classified as recurrent refractory 

Comments

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited April 2021 #2
    Well...

    Is doctor concerned?

  • Silver02
    Silver02 Member Posts: 14
    #3
    po18guy said:

    Well...

    Is doctor concerned?

    amnesia

    I wasn't aware I had x-rays done and C-RP measure until yesterday when I was looking through MyChart. I have had amnesia while I was hospitalized for a week and I don't remember any x-ray taken or any doctor talking to me. So I don't know if the doctor was concerned when the results came out because if he did talk to me I wouldn't be able to retrieve anything from my memory. That's why I'm confused and don't know what to think about the results that I've read. Maybe the doctor disclosed an issue that I'm not able to remember.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #4
    Silver02 said:

    amnesia

    I wasn't aware I had x-rays done and C-RP measure until yesterday when I was looking through MyChart. I have had amnesia while I was hospitalized for a week and I don't remember any x-ray taken or any doctor talking to me. So I don't know if the doctor was concerned when the results came out because if he did talk to me I wouldn't be able to retrieve anything from my memory. That's why I'm confused and don't know what to think about the results that I've read. Maybe the doctor disclosed an issue that I'm not able to remember.

    ??

    If you are uncertain regarding something your doctor may or may not have said, why not just ask him ?

  • Silver02
    Silver02 Member Posts: 14
    #5
    Max Former Hodgkins Stage 3 said:

    ??

    If you are uncertain regarding something your doctor may or may not have said, why not just ask him ?

    I did

    I did contact the doctor to schedule an appointment to discuss the matter with him but the weekend came in the way so I thought I might have an ease of mind by asking here until I get to have an appointment with him. I had no intent to reflect my anxiety on here but sometimes it becomes to overbaring. I do apologize.

  • Silver02
    Silver02 Member Posts: 14
    #6
    po18guy said:

    Have you been taking...

    Ativan, i.e. Lorazepam? That is anti-anxiety and has some anti-nausea effects. But, it also seems to disconnect your memory banks from your senses. Call doctor. If doctor is not worried, then neither should you be. Honestly, hematology patients have blood results that would have many a GP or internal physician sending us to the ICU. We are in a different world now, and wonky blood readings or the results of a single test do not matter. Doctor is watching the trend across several tests to see if anything is worth noting.

    I was on 4 different anti

    I was on 4 different anti-nausea medications when I started to loss my memory. I think being on a morphine pump made it even worse. When they started tampering down those drugs I started gaining consciousness and memory. My family told me I was aware most of the time and I was talking sense which surprises me because I have absolutely no memory of a whole week of my stay in the hospital. I requested an appointment and they'll probably schedule it tomorrow so fingers crossed. I do hope its nothing major, I just had a very traumatizing SCT so I guess my anxiety is driven from the PTSD. I'll keep you posted with what the doctor says!

  • po18guy
    po18guy Member Posts: 1,505 Member
    #7
    Silver02 said:

    amnesia

    I wasn't aware I had x-rays done and C-RP measure until yesterday when I was looking through MyChart. I have had amnesia while I was hospitalized for a week and I don't remember any x-ray taken or any doctor talking to me. So I don't know if the doctor was concerned when the results came out because if he did talk to me I wouldn't be able to retrieve anything from my memory. That's why I'm confused and don't know what to think about the results that I've read. Maybe the doctor disclosed an issue that I'm not able to remember.

    Have you been taking...

    Ativan, i.e. Lorazepam? That is anti-anxiety and has some anti-nausea effects. But, it also seems to disconnect your memory banks from your senses. Call doctor. If doctor is not worried, then neither should you be. Honestly, hematology patients have blood results that would have many a GP or internal physician sending us to the ICU. We are in a different world now, and wonky blood readings or the results of a single test do not matter. Doctor is watching the trend across several tests to see if anything is worth noting.

  • po18guy
    po18guy Member Posts: 1,505 Member
    edited May 2021 #8
    Just be at peace until you have the full story

    There is also Lactate Dehydrogenase (LDH) which "can" be associated with tumor cells, or it can simply mean that you have a minor injury that is healing , or even that you have exerted your muscles. So, until and unless we are experts at reading and interpreting blood results, it is far better to allow doctor to do the heavy work. I have had numbers that were concerning, but by the next blood test, they were back in the expected range. Two blood tests taken 5 minuters apart will have different readings. And, here is another point: "expected range" and not "normal range" since weare not in a normal situation. Actually, our blood numbers can, at times, be even better than those withoutcancer. Therefore, relax, try not to read too much into the results and enjoy each day as it comes. 

     

     

  • Silver02
    Silver02 Member Posts: 14
    edited May 2021 #9
    po18guy said:

    Just be at peace until you have the full story

    There is also Lactate Dehydrogenase (LDH) which "can" be associated with tumor cells, or it can simply mean that you have a minor injury that is healing , or even that you have exerted your muscles. So, until and unless we are experts at reading and interpreting blood results, it is far better to allow doctor to do the heavy work. I have had numbers that were concerning, but by the next blood test, they were back in the expected range. Two blood tests taken 5 minuters apart will have different readings. And, here is another point: "expected range" and not "normal range" since weare not in a normal situation. Actually, our blood numbers can, at times, be even better than those withoutcancer. Therefore, relax, try not to read too much into the results and enjoy each day as it comes. 

     

     

    Makes sense

    Yes, everything you just said makes absolute sense. Thank you for your input and I'll keep my faith strong! Wait until my next appointment with the doctor and hopefully all is well.

  • po18guy
    po18guy Member Posts: 1,505 Member
    #10
    Silver02 said:

    Makes sense

    Yes, everything you just said makes absolute sense. Thank you for your input and I'll keep my faith strong! Wait until my next appointment with the doctor and hopefully all is well.

    Right here and right now, all

    Right here and right now, all is well. In my case, i have no idea if I will wake up tomorrow or not. And I am good with that. If my day will be ruined, I prefer it to be via sometihng concrete rather than something worried about. Do you have a "worry book"? It is a spiral binder, tablet or other that you write your daily worries in as they occur to you. Then, perhaps weekly, you go back over those worries and strike out those that did not come to pass. I am betting that you will strike out all of your worries, and if one of them did manifest itself, I'll again bet that it was not as bad as feared. The point of this is that it gives you power over your worries. You strike them out. Erase them. Destroy them even. It also makes clear how much you worry via how many entries you make in the book. Lastly, it shows the lack of any positive value in worry. Just a thought. 

  • Silver02
    Silver02 Member Posts: 14
    edited May 2021 #11
    po18guy said:

    Right here and right now, all

    Right here and right now, all is well. In my case, i have no idea if I will wake up tomorrow or not. And I am good with that. If my day will be ruined, I prefer it to be via sometihng concrete rather than something worried about. Do you have a "worry book"? It is a spiral binder, tablet or other that you write your daily worries in as they occur to you. Then, perhaps weekly, you go back over those worries and strike out those that did not come to pass. I am betting that you will strike out all of your worries, and if one of them did manifest itself, I'll again bet that it was not as bad as feared. The point of this is that it gives you power over your worries. You strike them out. Erase them. Destroy them even. It also makes clear how much you worry via how many entries you make in the book. Lastly, it shows the lack of any positive value in worry. Just a thought. 

    Great

    If my day will be ruined, I prefer it to be via sometihng concrete rather than something worried about.

    what a great way quote. I'll live by it. Makes life easier.

    keeping track of thoughts is also a great tip. I've been told by my therapist as a way to measure my anxiety level. I love the idea of scratching the idea out, with time we'll tend to disregard negative ideas easier rather than clinging to them for no reason but being anxious. 
    Thank you po18guy! 

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