nobrand's Journey with Diffuse Large B-Cell Lymphoma

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Patient: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Diffuse Large B-Cell Lymphoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Male, Age: 33

  1. 1
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 5 years ago
    nobrand's Avatar

    Diagnosed

    Oh No

    Oh geez. I'm just glad to finally figure out what's going on in my body. Leading up to my diagnosis, I experienced night sweats and a constant, mild fever.

    1 Comment
  2. 2
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 5 years ago
    nobrand's Avatar

    bone marrow biopsy

    Procedure or Surgery

    Extremely painful procedure-- I can't tell you how glad I am that it's over. If I have another, I want to be knocked out.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  3. 3
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 5 years ago
    nobrand's Avatar

    Lumbar puncture

    Procedure or Surgery

    This one wasn't so bad. They used an xray machine to guide the needle. Other than some pressure, I mostly felt tingles down my leg. When they pulled the needle out, the nurse bopped my leg-- which was actually a great distraction. I laid flat for the rest of the day.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  4. 4
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 5 years ago
    nobrand's Avatar

    PET scan

    Procedure or Surgery

    The milky beverage they had me drink first wasn't the best, but not terrible. It took about two hours to complete. Painless other than one simple needle stick. They found a possible other area of cancer in my right lung too.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  5. 5
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 5 years ago
    nobrand's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    It wasn't a bad procedure at all. The hospital staff did a great job giving me sedation. The lidocaine is starting to wear off, and it does hurt. I think it hurts in association with my shoulder, which has had referred pain for some time due to the mass in my liver. I feel kinda bionic, and I have a bump on my chest now. I hope it all goes well with my first use tomorrow... my first chemo treatment is here.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  6. 6
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 5 years ago
    nobrand's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I just did my first round of R-CHOP chemo yesterday. I was there for over six hours. Everyone at the clinic is just so nice, and they made sure I was taken care of. I had some reactions to the rituxan, so I wasn't able to finish it all. I hope I can finish all of my next treatment. I know I can do it.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  7. 7
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 5 years ago
    nobrand's Avatar

    Nausea/Vomiting

    Side Effects

    I keep getting a hot feeling in my stomach, then it feels like it's getting twisted up. Although I've felt like it, I have not had any vomiting. I have taken my meds right when the feeling starts, and they usually nip it in the bud. I definitely feel more sensitive to smells.

    1 Comment
  8. 8
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Fatigue (tiredness)

    Side Effects

    I have been taking prednisone at 100 mg a day for the past five days. Today, that dropped off. It's been an okay day, but quite a bit of sluggishness and nausea. The cats can tell I don't feel well, so they have been super sweet all day. :)

    0 Comments
  9. 9
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Nausea/Vomiting

    Side Effects

    Yesterday was particularly bad. Most of the day spent curled up on the sofa. Mad stomach pains. Now here I am, up early. I already took my anti-nausea meds and having a ginger ale. I do feel better today; I hope this keeps up.

    0 Comments
  10. 10
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Feeling good

    Celebration

    Nausea at a minimum, and eating is joyous again. I'd say that's a celebration... hopefully this will last a while.. next chemo is soon...

    0 Comments
  11. 11
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Hair loss (alopecia)

    Side Effects

    I bid thee farewell hair.. you will be missed!

    0 Comments
  12. 12
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Hair loss (alopecia)

    Side Effects

    I'm trying to take this in stride. I cannot believe how quickly my hair is falling out. I want to make it all a big joke and run up to people while pulling out tufts of my hair. That oughta make them think I'm nuts. Very messy too. Worst part is-- beard is coming out too. Goodbye identity. :/

    1 Comment
  13. 13
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    R-CHOP Round Two: My appointment was at 9 AM, and I left at 5:30 PM. That's a lot of infusing. Thoughts-- the doxyrubicin stings when it goes in a bit, but not badly. The nurse pushes this medicine into your IV sitting right there. I winced, and she slowed down. Good. The vincristine was a snap, and the cytoxan too. It's the rituxan that I can't stand. It makes me feel hot flashes and overall just icky. They were slow with it, and kept taking my vitals. They were good, so they speed it up a notch. I said yes, yes go ahead. You see, my goal was to finish that entire bag of it. We got up to 300 ml/hr and I couldn't go any faster. It was making me nauseous. My amazing onco nurse, Susan, gave me some medicine to counteract that. Then I felt good. I left the infusion center feeling like I had one beer too many, but I had my trusty ride. When I got home, I had a bit of dinner and went to watch some tv. The second I sat down, I was out like a light.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  14. 14
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Neulasta shot this morning. Quick and minimal shot to the arm. I hope I don't have the same side effects like last time. That bone pain was something else! I'm especially grateful to my pal/neighbor, Quinn, for giving me a ride there! So nice!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  15. 15
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Mood changes

    Side Effects

    I don't care much for taking this much prednisone. Makes me feel a bit overwhelmed and agitated. I wish I didn't feel this way.

    3 Comments
  16. 16
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Nerve damage (peripheral neuropathy)

    Side Effects

    The past few days have really taught me what neuropathy is. Every so often, I feel like I have no hands or feet. Then, they come back in a warm tingly feeling.. it almost hurts, if you think of it that way. Uncomfortable is a better word for it. I don't really want to tell the doctor-- it looks like they will lower my dosage of vincristine. I don't want no weak chemo! My goal here is to nuke the tumors, not have hands and feet.

    0 Comments
  17. 17
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Dental problems

    Side Effects

    Looks like the chemo may have weakened a tooth, and now it is very loose. The gums around the tooth are now swollen and there are signs of infection. I went to the dentist, and he was at a loss for words. He seemed to have no idea how to help a chemo patient. I am being referred to an oral surgeon now. The dentist didn't even want to prescribe antibiotics-- he seemed bewildered by my "current medications" list. I hope this can be taken care of soon! It's driving me nuts! Take away fact-- don't expect the dentist to understand anything about cancer or its effects on the body. Expect your dentist and oncologist to work together to solve the problem.

    3 Comments
  18. 18
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Tooth loss

    Side Effects

    My oncologist, dentist and oral surgeon all decided the tooth had to go. Thanks cancer for giving me a toothless smile.... boo :( My lymph nodes are slightly swollen and tender, and I have chemo tomorrow. I really hope my blood counts are okay; I don't want any delays! I'm so tired, and worried about my job now. FMLA runs out in one month... I don't know how I will get the energy to go back to work in time. Today sucks!

    2 Comments
  19. 19
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Chemo #3 down- It's a bit more of a routine by now.. sitting there eight hours with relatively little energy to do much other than watch people scavenge snacks from the basket of goods they keep out. I would say it is a drag, but the drugs they give somehow keep my mind in a different, absent place. Rituxan and I are still enemies-- we just don't get along. No more big shakes, but lots of feeling uncomfortable and nauseous. Of course, the oncology nurses don't want to clean up any mess, so they stopped the infusion at one point and gave me Ativan. That helped a lot, they started it back up and I finished the whole round. Good. I feel a lot more worn out than last time.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  20. 20
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Day after Neulasta shot completed. It's a quick and easy thing to do. My WBC count is 3.5, and that is with a Neulasta shot in my last chemo session. I'd hate to think what that number would be without this stuff. I guess the bone pain is worth it.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
    2 Comments
  21. 21
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Thinking problems

    Side Effects

    I keep getting this nagging feeling of giving up. It's hard to put into words where my mind has been lately. I'll blame the chemo.

    3 Comments
  22. 22
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Pain

    Side Effects

    I've been feeling a lot of pain lately-- it's like it moves around my body. My bones hurt from the Neulatsa, and that focuses on my lower back area. My liver area and shoulder have started hurting again too. I've been feeling very low this week. I know that these feelings of depression make pain feel even worse. I remind people of death. I can tell that some are very busy pushing me away out of fear, as if I remind them of someone they've already lost to cancer or that I am an annoyance impeding their "living." I'm realizing how few friends I have, and how hard it is to hang out with the few that are left without being a source of depression in their lives. So, I've spent a lot of time alone. I have put my paperwork together to make sure I won't prolong any suffering if this disease gets worse. I have an advanced directive to bring to my next doctor's visit. I refuse to think it's suicidal to simply be ready to die if I must.

    5 Comments
  23. 23
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    PET scan

    Procedure or Surgery

    Just had my second PET scan. This time I avoided the IV line all together thanks to my port. They simply injected the tracer right into my button! The test takes a long time, with a lot of waiting. It gave me plenty of time to reflect and re-energize my anxieties, whether about my cancer's progress or the scanner zapping me like foil in a microwave. I forgot to take my ring off before the scan, then felt I couldn't say this fact to the technician. (Go figure-- I blame chemo brain.) So, I laid there the whole time thinking the PET scanner would start smoking and become some deathly ring of fire. However, no, that did not happen... I lived to pee out my isotope and go home. Results Friday? Maybe. I have chemo/doctor visit then, but my doctor is on vacation. I guess I get to hear the results from a stranger. Boo.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
    3 Comments
  24. 24
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Nausea/Vomiting

    Side Effects

    I feel just plain awful-- this is my secret for you guys here at WhatNext. Everyone else is happy-go-lucky due to the PET scan results... I can't bring them down with this. I'm trying my best to get this under control. Pet scan results: Tumor showing response. It has shrunk down from it's original large mass to two separate areas of PET activity. I'm guessing this is a good thing, but I thought it was a good sign if you saw nothing at the interim scan. I don't know if I quite understand my PET results... the stand-in doctor today didn't agree with me. His bedside manners were awkward. Since I don't understand it today, I'm going to try to understand it tomorrow instead.

    1 Comment
  25. 25
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Nausea, Pain, Fatigue

    Side Effects

    The past few days have been kinda yucky. Lots of otherworldly nauseous waves. I'm trying to get smart about treating nausea, but I'm not having a lot of success. Prochlorperazine and Odansetron don't really have an effect, and I'm usually too late when I take them. I've been following the doctor's recommendations for handing this.. and it can work, but there is always a downside. I am supposed to apply the following pill cascade, in steps, until nausea leaves the building: 1. Prochlorperazine 2. Odansetron 3. Lorazepam 4. Phenergan Nausea meds are hard to dose and keep working. I am often worried when I hit #4 that I may begin foaming at the mouth, but I usually pass out before experiencing any such medication side effect. If you've ever taken Phenergan, you'll know what I mean-- it works, but I hate that I have to lose consciousness as a result. I forced myself to go to a farmer's market yesterday to check out some fresh fruits and veggies. I had followed the cascade up to level three. There was a jug band playing, and I considered dancing. Proof itself that I may not have been nauseous anymore, but I certainly wasn't myself. I'll take what I can get!

    2 Comments
  26. 26
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    It's chemo #5, and call me a Debbie Downer. The whole chemo experience just seems to get worse every time. I'm usually somewhat okay until the Rituxan. I simply cannot describe the feeling, as there is nothing in this world I can compare it to. It's like I'm being given the cooties, or something equally as violating. I feel like I need a shower, but I know that icky feeling will only go away with time. I feel like a chewed up piece of gum stuck under a desk. I haven't decided the flavor. On the bright side: Rituxin does improve overall survival rates.. a pretty good reward for feeling pathetic.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    6 Comments
  27. 27
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Nausea, Peripheral Neuropathy

    Side Effects

    Nobrand's nausea clinic is open for business today. I have had compazine and zofran and seem to be okay sometimes, then it "breaks through" for a while. So far, easing this breakthrough nausea has been a bit of a mystery to me, as there really aren't many fast acting anti-emetics. Here are some tactics I have employed to combat breakthrough nausea: -Prop feet up a bit higher -Wrap in blankets to warm up -Nibble on a piece of ginger root Sadly enough, these techniques are easily done at home, but not when out. This leads to situations in which I feel like I'm doubled over in an L shape, while still trying to look cancer happy for everyone else! (!Happy Face!) Neuropathy is messing up my jazz hands. Prickly and tingly in my feet too. Silly me forgot to discuss acupuncture with the doctor.. I don't think I remembered to ask one question I had thought of. I accidentally missed my Neulasta shot yesterday too, so I have to deal with that tomorrow. I'm hoping they won't charge me some missed appointment fee.. that would make me really sad. I couldn't get out of bed or move-- honest! I'm hoping they'll cut me some slack, because I'm already struggling to finance my meager existence as it is! Thanks for reading, sorry for the rambling..it's hard to get all of these thoughts out.

    3 Comments
  28. 28
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Neulasta to stir the 'ol bone marrow into action! Of course, two days late on accident-- no one seemed to care, just glad to see me come in alive and get the shot. What a great place my cancer center is, even if it turns my stomach a little to go in there. Temperature 99.2.. nurse said to watch that. Funny, after the 104s I was having pre-chemo, 99.2 seems like a walk in the park!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  29. 29
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Nausea/Vomiting

    Side Effects

    I woke up with my head spinning and mouth salivating... I heave-ho'd all the way to the toilet. I have a feeling this morning moment is sponsored by chemo... but I have a hard time understanding how something I did ONE WEEK ago is still making me feel this way. .. bleh.

    3 Comments
  30. 30
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Mouth sores

    Side Effects

    Just when I thought other problems were going away, here comes a swollen tongue and difficulty swallowing. I still want to eat :( I don't think I can stomach an Ensure though... A milkshake sounds really good right about now. I took an oxycodone because this pain is radiating in my neck from my tongue. Now I have to walk to the grocery store and figure out what to buy. Two thoughts-- cheesecake, and I wish I had a ride to the store. I thought by 2012 we were all supposed to have Jetsons vehicles. Alas!

    4 Comments
  31. 31
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    about 5 years ago
    nobrand's Avatar

    Magic!

    Celebration

    I broke down and went to buy the Magic Mouthwash. I just took my first swish a few minutes ago, and I can surely say this is magic. The pain is completely gone! No celebration comes without a price however, and I feel like I just went to the dentist. I'm sure I must be drooling everywhere. I hope this lasts a long time though... I haven't had this kind of relief in a while! I hope I don't swallow my tongue when I sleep tonight-- oh, but it will be a good sleep!! :)

    1 Comment
  32. 32
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Chemo number six. It began with a rocky start-- I think I may have been having a nervous breakdown... not sure. They couldn't get my port to access, as it was clogged. I'm so glad I love that lab tech, she is just the most wonderful person.. if it was someone else, I know I would have passed out. She walked me out to the waiting room and I waited for my doc visit... Things suddenly have changed.. for some reason? He said he is now considering this my last chemo.. and I am having a PET scan.. if it is clean, then good.. we'll stop. If not, he's going to switch the chemo regimen or go for a stem cell transplant. While I think this is good news... my thoughts are that he may consider me too weak to continue? I wouldn't be surprised at all if that were his reasoning.. after the way I rolled into there today. I think they gave me a lot more tranquil juice than usual.. because I kept losing touch with reality. Despite that, I feel bad. I just feel awful. This is the most difficult task I have ever faced, and I guess it's done now. If that scan lights up still, I don't really know what I would do. Right now I would say a resounding no to anything. If I keep that train of thought, then this is my last chemo no matter the outcome. I hesitate to celebrate that.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  33. 33
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Nausea, Vomiting, Diarrhea, Unease

    Side Effects

    Both ends get to have fun now! Sorry to be so graphic, but it must be shared. For the nausea and vomiting, I have tried each and every remedy you can Google.. sometimes-- you just gotta throw up. Fenergan can help, but I like staying awake. With this whole life could be shorter thing, I don't really want to miss much. With all of this in mind, my body feels really out of it right now. I pressed myself so hard yesterday.. I walked to the bank to get quarters and did laundry. I keep trying to test myself, but end up so worn out. I am becoming more and more confined to home. There can be several days that pass before I leave my apartment. I want to go out sometimes-- like to get dinner, but I usually vomit so soon after eating that it's best to just eat at home. I really feel that I've lost a lot of my life to this already. Even if I do get better, my life will never be the same as before. My body is so different, so quickly aged.. I went from steadfast to feeble so fast. Every pill I take, I can feel every cell in my body wilting and drooping further. I'm trying so hard to have a positive attitude.. but the truth of the matter is, a positive attitude doesn't kill cancer. The drugs either do or they don't. I don't think accepting that fact is being negative.. it's being honest with myself. I have been overtaken with anguish and confusion about death recently.. I have been holding it all inside and tearing up at stupid moments. I'm not saying I'm depressed, but I feel really out of control. I know that life will go on without me, but I worry about silly things.. like who will cuddle on my cats or who will dust the nick-nacks. Oy.

    0 Comments
  34. 34
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    Yesterday, fever overtook me..now I'm hanging out at the hospital watching bad tv. About every five minutes, I nearly hurl. I'm not really sure what's going on here, but I'm assuming it's a stomach issue going on? blah!

    1 Comment
  35. 35
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Discharged from the hospital

    Celebration

    At first, I felt like giving up, and then I felt like fighting-- then gave up again, and so on.. Staying in the hospital sucks.. you would think it would be lovely; having all of these fantastic people bringing you hot blankets and lovely elixirs of morphine. Nope! Home is where the heart is! I still feel really terrible, but my doctor said they couldn't find anything in my blood cultures. I have to take antibiotics for the next five days. You can bet I will stuff that pill in my face! I never want this happen to me again.. Oh please, please, please never let that happen to me again! However, for now... woo hoo!

    3 Comments
  36. 36
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Cancer has grown

    Oh No

    It looks like my R-CHOP therapy was unsuccessful, and my tumor has grown. Oh geez.

    2 Comments
  37. 37
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Consult

    Radiation

    The radiation oncologist doesn't think, in his right mind, he can perform the required radiation. The liver is a sensitive place, and my mass is a little too large for it to be safe. Now I'll never be a radioactive darling.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    2 Comments
  38. 38
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Decisions, decisions..

    Decision Point

    Well-- my medical records still haven't budged.. however, the lovely Amanda at the university hospital is kind enough to fix that up for me. I have an appointment on Halloween. This is not really what I wanted-- I had hoped for an appointment this week. Perhaps they can squeeze me in earlier when they see my records. I am supposed to be back on chemo by Friday... I'm wondering if that can wait until after the second (third?) opinion.

    2 Comments
  39. 39
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Pain

    Side Effects

    The inside of your body is a very sensitive place. If I just breathe the wrong way, my tumor touches something in there and it is a sensation I have never experienced before. If this next round of chemo doesn't work-- I'm so screwed. Where's my oxycodone *grumble grumble*

    0 Comments
  40. 40
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Pain

    Side Effects

    It's a new one too. Right at my lower back, along that bone they pull a bone marrow biopsy from. I feel unbelievably debilitated right now. I just had my pain dose upped yesterday... finally. And they gave me a month's supply. Tomorrow is my second opinion, then I have to make my treatment decision. My current doctor is getting serious, and we have to get this party started-- he says that if I choose to go with him, I'll be in the hospital on Saturday or Monday. I may opt for the earlier time.. I think I need morphine.

    1 Comment
  41. 41
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Treatment delays

    Oh No

    I had my blood drawn, and my white blood cells still have not risen above 1.2. I think they may have fried my bone marrow too much already with chemo. If my count doesn't rise by Friday, I will require a bone marrow biopsy. I'm hoping for good news-- this is all feeling like a nightmare.

    2 Comments
  42. 42
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Pain

    Side Effects

    The pinching, throbbing, aching, stabbing feeling in my liver is back. It's constant, and gets worse each time I breathe. Sometimes I'm just so out of breath trying to breathe without irritating it. Everything is so interconnected, and it drives me nuts. I'm feeling desperate.

    0 Comments
  43. 43
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    liver biopsy

    Procedure or Surgery

    This is my post-relapse/refractory re-biopsy. The tumor is smaller than it was initially, so getting a good sample of tissue is more of a challenge. Despite that, this time was much better than the first-- I had a lot of relief when I realized nearly the same team was working with me again. They even remembered me... even details of my life that I told them in passing the last time they gave me the talking serum. I'm glad I stayed with my original hospital instead of going to the university hospital. They may have less experience here with stem cell transplants, but I feel comfortable.

    Went as Expected: Strongly Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    2 Comments
  44. 44
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    R-ICE chemotherapy

    Drug or Chemo Therapy

    I am now on my fifth day in the hospital, and finally the chemo has stopped. What started off as an easy jaunt, ended up being quite sickening as my body got used to some new invaders: -Ifosfamide -Carboplaitin -Etoposide I have the deepest desire to just eat what I want, but I cannot. I managed to eat vegetable broth and mashed potatoes earlier. I'm keeping those down, and they gave me a new anti-nausea med called Reglan, that should help speed this food through my stomach so I don't have much of a chance of losing it. I have had visitors twice, so I have a new best friend called morphine. It's so much easier than staying awake.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    3 Comments
  45. 45
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    I feel good right now

    Celebration

    I'm taking what I can get here. I woke this morning with some beautiful sun in the window, and an inkling of that zest for life I used to feel. I have not vomited in over two days now, and my bowels are functioning normally. Sometimes I read my little corner here on WhatNext and feel that it's too negative, not survivor-themed enough for the purpose of this site. I'm sorry if I've brought you down-- I just want to be as honest as possible. I feel that if I paint a picture of a falsity, it's more dangerous than ever to those looking for insight to their illness. I just have to share when there is something good, and it is a celebration. This is a tough road, but beautiful days peek in here and there.

    2 Comments
  46. 46
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Hair loss (alopecia)

    Side Effects

    There goes my hair again! I had worked up a good amount of it after my last run in with alopecia, and I was starting to like how it looks. Meh-- it's not a big deal... I already know how I look bald :)

    0 Comments
  47. 47
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Health insurance issue

    Oh No

    What has been a pretty easy process so far, just got more difficult. Apparently my insurance has a "24 month transplant clause." Amazing how they got themselves out of that one. Now I get to talk to the financial specialists. I'm not sure being in any more debt is worth living for-- I'll never be able to pay that back. Never have I felt more like a drain to society.

    9 Comments
  48. 48
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    R-ICE chemotherapy #2

    Drug or Chemo Therapy

    It is truly a test of patience, and a bit different than the first treatment. So far, I'm not having the overwhelming vomiting any longer. I did it once, and that was it so far. Every time I think I may feel the slightest nauseous, I ask for Ativan. IT REALLY WORKS! Ativan right to my heart :) It still is a huge hospital stay, with a lot of interrupted slumbers.. and that is what makes it so hard. Also, there are some very long infusion times.. one bag goes for 24 hours straight, and you are followed by another 12 hour bag right after. I haven't been able to take a shower and I smell like I am leeching chemicals-- it turns my stomach a bit. My bed is also completely full of hair, as I have lost nearly all of it since I got here. What made this time 100% better, I think, is my sister visiting me. She came in to town, and has been simply hanging with me here. She's pulled out the trundle bed, and she lays right along with me. We're like two lazy bumps on a log. It's been fun to catch up and just relax. Having visitors does help a lot-- I won't lie. It makes me sad that I haven't been more connective with those around me. It has been a lonely journey thus far, and now I'm feeling spoiled. Leave it to cancer to teach me silly life lessons.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
  49. 49
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Nausea/Vomiting

    Side Effects

    Overall, my body is pretty weak from the chemo. I am still trying to get up and walk to one place each day-- trying to keep an acceptable level of mobility is difficult, as I am much less mobile than before. Friends try to help me sit down and get up-- which is so strange. Nausea and vomiting is still an issue at this point, but it appears to be very closely associated with waking or stressful moments. I think my mind is the worst off from treatment. I am taxed to the max, and too overwhelmed to think of time beyond two weeks from now. I'm overstimulated if I sit at the computer too long. This whole experience has been most unusual.

    3 Comments
  50. 50
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    almost 5 years ago
    nobrand's Avatar

    Blood Transfusion

    Other Care

    Today I received two units of blood to help bump up my red blood cells and platelets. I was starting to itch a lot on my leg, then I had two living-large nosebleeds.. hopefully this will stop that silliness. Back to resting now.

    3 Comments
  51. 51
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 4 years ago
    nobrand's Avatar

    Pulmonary function test

    Other Care

    It was interesting to say the least! You are enclosed in a glass box and blow and suck repeatedly on a nozzle while the nurse cheers you on. Did I care for it much? No. Was it that hard? No, not really. The results looked good, despite my past history of smoking! I'm cheered by this, and so glad that I took that step to quit the stogies. This is one of a few tests I have to do to prepare for the autologous stem cell transplant! Slowly, but surely, things are being crossed off the giant to-do list. It looks like this transplant is going to happen!

    0 Comments
  52. 52
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 4 years ago
    nobrand's Avatar

    R-ICE chemotherapy #3

    Drug or Chemo Therapy

    This cycle went very similar to cycle #2. Nausea and vomiting is still a bit horrendous, and comes out of nowhere. The nurse described it as "gut wrenching"-- and I agree. Other than the nausea, staying in the hospital is the hardest part of the treatment. The nurses and staff are just the best, but there is no comparison to the freedom of home. I either try to make the best of it, or request medicine to help me relax (ie sleep through it). I was sent home with a guided imagery CD, and I'm interested to explore that. My goal here is not to get addicted to Ativan just because chemo sucks .. it's a hard battle between simply needing to be relaxed and the worry of addiction.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    3 Comments
  53. 53
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 4 years ago
    nobrand's Avatar

    bone marrow biopsy

    Procedure or Surgery

    The second time around, and I am sad to say that the experience hasn't improved. That is just the most unbelievable, excruciating sensation that I have ever known. It really did my head in, I suppose. Please note that experiences may vary, and you just might find your own BMB pleasant. Be strong.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    3 Comments
  54. 54
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 4 years ago
    nobrand's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    This was R-ICE #4-- my "mobilization" as they say. The point of this chemo is to do two things: 1. Kill more cancer 2. Somehow allow my bone marrow to release stem cells to my bloodstream. Starting tomorrow, I will have to give myself daily Neupogen shots to stir my bone marrow into producing white blood cells (WBCs). This will also cause the crowding, and thus release of stem cells for collection via apheresis. Overall, my doctor says they don't like doing this many R-ICE treatments, but they have been somewhat okay. Nausea is a mysterious machine, and I spent one day of four knocked out to avoid vomiting myself to death. I was released from the hospital today, and I'm really having to take it easy. I had a resting heart rate of 145 earlier and troubles with pain on and of from my new Hickman catheter. I think the heart has chilled out a bit.. I'm afraid of what the night will bring.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  55. 55
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 4 years ago
    nobrand's Avatar

    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Mobilization! I'm actually doing two Neupogen shots to myself per day. I just gave myself my own injections, and it wasn't really that bad.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Neutral/NA
    2 Comments
  56. 56
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 4 years ago
    nobrand's Avatar

    Symptom Management

    Nausea got you down? Try a BAD CAD!!! On demand Benadryl, Ativan and Dexamethasone!

    2 Comments
  57. 57
    • nobrand
    • Experience with Diffuse Large B-Cell L...
    over 4 years ago
    nobrand's Avatar

    stem cell transplant

    Procedure or Surgery

    I just had a ceremonious re-injection of my stem cells. This has been a wild ride, and I must say-- I'm a bit lightheaded from it all. My hopes are really high right now, and really feeling that urge to live!!

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments