• Strong-girl's Avatar

    Strong-girl asked a questionNon-Hodgkin Lymphoma (NHL)

    Rituxan maintenance

    • po18guy's Avatar
      po18guy

      Follicular or DLBCL or? Either way, you are looking at an accelerated relapse if you stop maintenance. And the sad fact is that it can be increasingly difficult to knock down with each relapse. Maintenance also provides time - time for new therapies to arrive. Less toxic and/or more effective therapies. And that bed-time is not exactly wasted. You can nap, read, meditate, pray, do certain hobbies, discuss life with others, get to know the staff, etc.

      For five years, from[phone number redacted], I received a drug which was also believed to suppress the lymphoma. After check-in and the hour wait for labs to be complete, it was a four hour drip, plus some connect and disconnect times thrown in. Often it was an 8-hour day. But, that is the "cost of living" as Ii see it.

      Except for a 2-3 month period of watch and wait, I have been in constant treatment for over 12 years. Done day by day, it is doable. If you enjoy life, if you love others and they love you - it is worth whatever time and trouble it costs to remain as healthy as you can.

      That is how I see it.

      20 days ago
    • Beaujingles' Avatar
      Beaujingles

      Sorry, some folks with cancer would gladly trade places. Keep up with treatments, stay the course, you never know when a new therapy will be available. Thanks, po, appreciate your response.

      19 days ago
    • Hilkei's Avatar
      Hilkei

      I had R-CHOP in 2013 followed by 2 years Rituxan maintenance. My doctor took me off it at that time because that was the protocol. Within a year my MCL was back. I am now on Calquence, and it is a wonder drug. Two pills a day. Very little side effects for me at first, but my energy is diminishing over time and I’m on it now almost 3 years. Everything is slowly getting harder to do, but my outlook is still positive and I do what I can when I can. Thankfully my husband is a saint and helps me with everything. When I was first diagnosed with stage 4 MCL, the statistical life expectancy was 5 years and I am now going on my 8th year so anything is possible!

      6 days ago
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    Strong-girl asked a questionNon-Hodgkin Lymphoma (NHL)

    What can I expect on my first day of chemo?

    11 answers
    • Schlegel's Avatar
      Schlegel

      Take along a sweater since infusion centers are purposely kept cool to minimize nausea, but they also give you anti-nausea meds. Also take something to do -- a book, knitting or other craft, perhaps something to eat. As far as your response to the treatment, everyone is different, but chemo today is much easier than it was thirty years ago.

      12 months ago
    • BuckeyeShelby's Avatar
      BuckeyeShelby

      It's a scary time. I had an allergic reaction to one of my meds. Wasn't sure if I was going to barf or pass out. Luckily didn't do either. I yelled for help, and I think every nurse on the floor was at my side, except for the one who ran for my oncologist. It was scary for about 10 minutes, but even though my eyes were tightly closed, I knew I was surrounded by people who would make sure I was ok. And I was. That was really the worst thing that happened while I was in the chair. Bring a blanket, as treatment makes a lot of people cold. I brought trail mix and a pile of books. I got a lot of reading down in that chair. Some folks bring a loved one to keep them company. Some sleep, some knit or play w/a tablet or phone. And as much as I didn't like treatment, I actually missed some of it when it was over -- I missed being fussed over. Hang in there. After the first one, it gets easier because you know at least basically what to expect. Good luck.

      12 months ago
    • Coopswifey's Avatar
      Coopswifey

      I know it is scary. It was for me too because I was diagnosed this time last year. I tried my best to enjoy the holidays and my family was awesome. My first day of chemo was scary but everyone involved was so fantastic. They treat you like royalty even if you don’t feel like it. Hang in there.
      Prayers to you. I am now 2 month into remission

      12 months ago
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