Waldenstrom's

cdunklin
cdunklin CSN Member Posts: 1
in Lymphoma (Hodgkin and Non-Hodgkin) #1
My name is Charles and Ihave been diagnosed with Waldenstrom's. Am interested in any persons or family memebers who are dealing with or who have delt with this type of disease. About to have Rituxan.

Comments

  • KC13167
    KC13167 CSN Member Posts: 215
    #2
    Rare
    Hi Charles,

    I haven't heard of your type of lymphoma, so google it, I did. The national institute of health indicates that there are only 1,500 cases in the US each year. I'm sure that if there's anyone on this site who is familiar with your type of lymphoma they will contact you. Due to the infrequency of your illness, I hope that you are being treated at a large cancer treatment center.

    Prayers to you and your family,
    Kellie
  • allmost60
    allmost60 CSN Member Posts: 3,178 Member
    #3
    Welcome
    Hi Charles,
    Welcome to the group. If you have questions once you start the Rituxan there are quite a few of us here that have finished taking it, or in the 2 year maint stage of treatment. I go in every other month for my infusion for the next 2 years. I just had my 3rd infusion 2 weeks ago. So far I'm doing good with the Rituxan. I also had Rituxan in my chemo protocol CVP-R, six rounds, which I finished in December. The CVP part was not fun, but totally doable. I hope everything goes well for you and wish you the best. Hope you come back and let us know how you are doing. Sue
    Follicular NHL-stage3-grade2-typeA-diagnosed June,2010. Age 60.
  • JoanieP
    JoanieP CSN Member Posts: 573
    #4
    Charles
    Hi I just finished my last maintenance of rituxin. It took 2 years and 8 treatments. They have been using this drug successfully for many years. I will be glad to answer any questions.
  • Katecat
    Katecat Pre-Moderated Member, CSN Member Posts: 2 New User
    #5

    Hi Charles so very sorry you have this disease…I am 78 & just diagnosed with Waldenstrums after being so very healthy all my life....the docs say its in my bones & blood…I don't now if I can assist in any way but want you to know you are NOT alone…Im taking Brukinsa meds & think so far its helping…tests shows mprovement…my problem is that have severe stomach pain daily & the docs can't figure out why…did tons of tests & nothing is showing up as abnormal….the pharmacist who sends the Brukinsa says its possible that the meds are causing the stomach pain but I'm sure I agree….this all began in November when I had a severe kidney infection that spread to my blood.….I was treated & cured of that & then discovered this horrid disease… had the stomach pain since that time & before I started Brukinsa…..if I can assist in any way..just let me know…I understand how devastating this can but I urge you to stay hopeful…listen to your docs, take care of yourself & don't give up…best of good health to you!

  • PBL
    PBL CSN Member Posts: 390 Member
    #6

    Hello Katecat,

    Sorry to welcome you to the club no one wants to be a member in…

    I do not have Waldenström's, so will not comment on the specifics of the disease.

    However, I think it might get you better visibility if you started your own thread. This one is quite old (2011!) and the original poster seems to have never even posted a second message.

    I hope you find others with whom you can discuss treatments, side effects, and everything related to your illness, as support is key.

    Kind regards,

    PBL

Discussion Boards