nicki0920's Journey with Splenic Marginal Zone B-Cell Lymphoma

Survivor: Non-Hodgkin Lymphoma (NHL) > B-Cell Lymphoma > Marginal Zone B-Cell Lymphomas > Splenic Marginal Zone B-Cell Lymphoma

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: about 6 years ago, Female, Age: 46, Stage IV

  1. 1
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    Allergic reaction

    Side Effects

    I had my first round of Rituxan today. It took eight hours to complete because they had to stop the infusion twice. The first time was because of tightness in my chest and a general feeling of being ill at ease. They ran some Ativan and Benadryl through the IV, had me wait 30 minutes and started again. The second time I was having trouble catching my breath, coldness/tingling in hands and feet, and a splitting headache. They pushed some kind of steroid through the IV and had me wait another 30 minutes before starting again. While waiting to start again, I developed chills and couldn't get warm enough for around 20 minutes. Then the steroid kicked in and I sweated like I was running a marathon for the rest of the treatment. That nasty headache hung around until after I got home. I hope the dr is right that I had an unpleasant reaction because my WBC were elevated and attacking the Rituxin. They assured me that my WBC count should lower from the treatment today and the second treatment should go much smoother. Even though the treatment made me feel pretty cruddy, it is a small price to pay if I can get some relief from the pain the enlarged spleen causes.

    0 Comments
  2. 2
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    rituxan

    Drug or Chemo Therapy

    Only one under my belt. It was a little rough going in but I bounced back pretty quickly. I'm hoping they go more smoothly with pre-medicating with steroids moving forward

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  3. 3
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    Pain medicine

    Drug or Chemo Therapy

    Fentanyl patches kick butt! This is the first time in months that I haven't had constant pain. Best part is that I'm sharp on it. No narcotic haze!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  4. 4
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    Psychosocial

    Other Care

    I have the best shrink ever! Dr. Schrodt has been working with me on tweaking my adderall to overcome the sleepiness the pain meds cause. He was so interested in asking questions about my care and how I was doing that our session ran over 20 minutes. How many shrinks devote that kind of extra time to their patients? Thankfully I was seeing him before my diagnosis for anxiety/depression.

    0 Comments
  5. 5
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    Pain

    Side Effects

    I thought Fentanyl was the answer to a dream. Too bad it can't quite hold down the pain enough. I've had to add Hydrocodone back much to my dismay. These opiods are rough on the memory and multi-tasking.

    2 Comments
  6. 6
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    Work problems

    Oh No

    These pain meds are making me too fuzzy around the edges. I made my first huge mistake today. I forgot to schedule a technician for a high profile customer. I had salesmen and a customer blowing up my phone and yelling at me. That is until I broke down in tears with the salesman. I hated being such a girl and crying in front of a colleague. At least he quit yelling at me though.

    0 Comments
  7. 7
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    Rituxan (Rituximab)

    Drug or Chemo Therapy

    Just took my fourth weekly infusion of Rituxan yesterday. The oncologist came in mid way through and informed me that it isn't working since I'm still having pain and the spleen is still palpable. He wants to remove or irradiate the spleen. I'm going for second opinion.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
    1 Comment
  8. 8
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    High blood pressure (hypertension)

    Side Effects

    I've had normal blood pressure my whole life. Since taking Rituxan, it has gone through the roof. I even ended up in the ER because of splitting headache, dizziness and shortness of breath. My bp hovered in the 200/115 range all day until I was injected with a beta blocker that brought it down. The ER doc sent me home with a script for 10mg of Lisinopril. When I went in for my treatment 3 days later, it was still way too high. The oncologist bumped the dosage up to 40 mg. I've been testing off and on today and it is still too high but better. I'll have to call the oncologist on Monday to find out the next step in controlling it.

    1 Comment
  9. 9
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    Need a second opinion

    Decision Point

    I don't want to have my spleen removed or irradiated. Now the question is where to go. I think it will end up being Penn State but I'm in the process or researching

    1 Comment
  10. 10
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    rituxan

    Drug or Chemo Therapy

    The four weekly infusions did NOT make any progress in shrinking my spleen. The remaining two have been cancelled as a result.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
    0 Comments
  11. 11
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    Surgery or second opinion

    Decision Point

    My oncologist doesn't believe that traditional chemo will work and Rituxan failed. The next course of treatment with him would be to remove or irradiate the spleen. I'm not ready to accept that answer. I've scheduled an appointment with Mayo Clinic in Rochester, MN. I'm praying they have found a new treatment method that allows me to keep everything intact

    3 Comments
  12. 12
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    I'm approved for copay assistance through LLS.org

    Celebration

    I got the email yesterday telling me that I qualified for up to $1,800 in copay reimbursements! I also will receive a check for $100 to help with incidentals. Finances are one of my biggest worries. This goes a long way in easing my mind.

    1 Comment
  13. 13
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    I'm wired for sound now! I have the bracelet, key fob, and card from Bard Power Port to prove it. I think this is going to be one of my better decisions.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    2 Comments
  14. 14
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 6 years ago
    nicki0920's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Had the first round of Treanda (Bendamustine) and Rituxan (Rituximab) combo today. I cant say that it was the most fun that I've ever had while in a bed but it wasn't the worst either. The worst was named James but that's not a topic for this site. The Rituxan worked its usual magic and I have terrible body aches and muscle pain. That should be better by morning if everything goes as it did when I took Rituxan alone. I go back tomorrow to be infused with only Treanda. I was told that should only take an hour. We'll see. I've found that nothing is quite as advertised in the exciting world of cancer care. I will say that the Treanda infusion went pretty easily. I only had some mild nausea during infusion. That passed within an hour of completing the infusion. I'm hoping to avoid the more annoying side effect like fatigue but only time will tell.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
    1 Comment
  15. 15
    • nicki0920
    • Experience with Splenic Marginal Zon...
    over 5 years ago
    nicki0920's Avatar

    Fatigue (tiredness)

    Side Effects

    I'm almost 3 weeks out from my first round of chemo. When will I get some energy back? I'm worn out by the time I make my hour drive to work. Thank goodness I have a desk job. Hacking on a keyboard and wiggling a mouse is about all of the physical activity I can stand. This gets better with time, right?

    1 Comment
  16. 16
    • nicki0920
    • Experience with Splenic Marginal Zon...
    over 5 years ago
    nicki0920's Avatar

    Leaving work for treatment

    Decision Point

    The stress is too much. The reason I love my job is that it is a pressure cooker. Right now that isn't the healthiest thing for me. Besides, they are giving me bad reviews and looking to get rid of me. There is no sense in making myself sicker for a company that's going to dump my anyway. I'll play nice until my long term disability is finished, but then it will be time to look for a new job. That's not an easy task in this economic environment but something has to give.

    4 Comments
  17. 17
    • nicki0920
    • Experience with Splenic Marginal Zon...
    over 5 years ago
    nicki0920's Avatar

    That went better than expected

    Decision Point

    My employer is paying me 60% of my pay until my long term disability kicks in. They are going to continue paying my health insurance until I'm healthy enough to come back. I turned into a blubbering mass in the HR director's office. I couldn't believe they were being so good to me. I'm kinda waiting for the other shoe to drop though

    9 Comments
  18. 18
    • nicki0920
    • Experience with Splenic Marginal Zon...
    over 5 years ago
    nicki0920's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    The second round of rituxan/treanda went better than the first. The head nurse saw how bad I looked on my first round. She had the nurses divided the rituxan over two days instead of pushing it all on the first day. This time the main side effect I have is fatigue. I can handle that much better than the pain and nausea from the first round.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    2 Comments
  19. 19
    • nicki0920
    • Experience with Splenic Marginal Zon...
    over 5 years ago
    nicki0920's Avatar

    Work problems

    Oh No

    The mother fudgers fired me and didn't even bother to tell me. I had to find out while in the exam room at the doctor's office when my insurance was declined. When I called HR, their response was "oh yeah, we terminated you on 12/27." After they realized that no one bothered to let me know, they changed the termination date to January 2, 2014 so I'd at least have insurance through the end of January. It is now 02/09 and I still have not received my COBRA enrollment forms. Looks like I'll be contacting the Patient Advocated Foundation to see if what they have done is legal. I already have a pending case with them.

    3 Comments
  20. 20
    • nicki0920
    • Experience with Splenic Marginal Zon...
    about 5 years ago
    nicki0920's Avatar

    Remission

    Celebration

    Got my PET scan results today. I'm in complete remission!

    13 Comments
  21. 21
    • nicki0920
    • Experience with Splenic Marginal Zon...
    almost 5 years ago
    nicki0920's Avatar

    Money

    Oh No

    Disability claim denied. I had a feeling it would be denied on the first go around. Now to find a lawyer to appeal. I'm not sure how much longer I can get by this way.

    2 Comments