Round 2 - Bendamustine / Rituximab

  • 5 replies
  • 10 subscribers
  • 614 views

Due to the bad reaction that I had to Ritux during my first infusion, I was quite nervous. They planned on slowing down the drip and gave me the ‘rescue meds’ before we even started. They estimated 5-6 hours. Well, I fell asleep after the first hour (Ativan) and slept through the whole thing. It had only taken four hours. They kept speeding up the drip, as they knew I was tolerating it.

I fully expected a terrible night, but, it went surprisingly well. Mild headache. Mild nausea. Tired.

So I expected the next infusion day (the easy day), the Benda day, to be a breeze. Yes, the infusion was a breeze. Only took about an hour. After I got home, it got rough. SO tired. SO nauseous. And a migraine. I’ve also found that I cant take any anti-nausea meds because they all seem to intensify my headache. I’ve tried five different ones. The only thing that helps the nausea is to eat some saltines and drink lots of water. Prayed that this phase would pass quickly. That was a Thursday night and I was feeling much better by Saturday night.

My bone lesions are still a huge problem. My fracture has healed nicely, but I am still having so much nerve pain in my hip/butt/groin/knee that I’m still housebound. Frustrated that my doctors are pointing fingers at each other. Oncologist, “This sounds like something that ortho needs to look at.” And ortho says, “This sounds like a direct problem from the lymphoma. Your oncologist should have some answers.” Okayyyyyyy. Unhelpful. I don't feel a high confidence that either will be able to help, at this point. Yes, they will probably run tests and throw meds at it, but I dont tolerate most meds very well, so I wait. I AM heading in the right direction, but the progress is MUCH slower than I had hoped. In the meantime, I have an appointment with an acupuncturist on Tuesday. Damaged nerve pathways should be something that he might be able to treat. Getting out of the house and into the car? That makes my heart pound a bit faster. It's a painful process. The next time youre riding in your car, notice all the micro motions that your body goes through even on a smooth road. Every tiny motion aggravates the nerve pain. It's like there's broken glass under my skin. If I stay still, it doesnt hurt. If I move, it bites me in multiple places. Eh, sorry to wax on about my secondary condition. But I DID find this forum because I searched for 'lymphoma and bone lesions', so maybe there is someone else out there who has this uncommon secondary and wants to chat about it!

Oh, one more thing. I AM losing my hair. Not by the handful and I dont think I'll go bald, but it's definitely noticeable when I brush. I did see 'hair loss' on the benda side effects, even though everyone says that isnt a side effect. The term 'hair loss' is so general. That can mean one hair. That can mean bald. I have no control over it, so will just deal with it and wear a hat. I'm sure it will grow back after the six months is past.

  • Hi and thanks for your update. I do remember sleeping through lots of my treatment due to the amount of antihistamines so a good part of my 120hrs IV passed with little incident.

    Test up and let’s look for the acupuncturist to help you out.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi just a quick comment re anti nausea have they tried aprepitant it stops you being sick as it blocks the receptor that triggers being sick. I took it and apart from hiccups for a day or two they were not an issue. Worth discussing if its not one of the five you have tried.

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • John, Thank you so much for offering a suggestion for me. Yes, aprepitant (Emend) was one of the five that I tried. I’ve looked up other options, and they all seem to have headache on their list of common side effects. In thinking back, none of the five actually quelled my nausea, so, I had nausea AND a migraine. I’m learning to manage the nausea and it does calm down after 48hrs, but those 2 days are pretty miserable.

  • Update on my acupuncture appointment. It hurt like hell! I guess a rule of thumb among practitioners is “The more it hurts, the more you need it”. Or, that's just an excuse and I need to find a new acupuncturist! I felt great on the drive home from his office, but the nerve pains flared up again that evening. And more the next morning. Thankfully, a couple of do-dads that I ordered arrived that next day and seem to be helping greatly. Arnica gel and a PEMF device. (not at the same time LOL) My last two days have been pretty awesome and I have hope that I will get out of the damn house soon (on my own accord)! I've been cooped up here and pretty immobile since the beginning of December. My dogs miss their walks. My garden is a hot mess. And my pool opens in a few weeks. I'm getting nervous about all that needs to be done. Praying that this healing trend continues! But it's fooled me before... I know. Stay positive. At least I'm headed in the right direction. Am I having more good days than bad? I cant let two good days define the answer to that question. But I have hope.

  • I find it hard to accept that putting more needles into my body than is necessary can be good Joy especially if it made no real difference and even came with it’s own pain but good you have found some relief.

    Its all the little things that become big things that mount up over time that at the start you would have not been able to see become a problem.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge