The Leukemia & Lymphoma Society - Fighting Blood Cancers
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  • 390. Re: Hi- New to the group
    Inga Registered Users
    Currently Being Moderated

    Hi all--got my CT scan results yesterday--the R-CHOP is working!! Most of my tumors are less than half their original size. I have never seen my husband cry tears of joy before--we are now just enjoying one of the "ups" of this long, crazy roller coaster ride, and holding on tight. By the way, I like my wigs--one friend's neighbor even said, "You got your haircut! I want a haircut too!" Ha ha. That was fun. Thinking of you.

  • 391. Re: Hi- New to the group
    zazoo Registered Users
    Currently Being Moderated

    j, you are a dynamo-- I have follicular, diagnosed and treated in 2005, 6 R-CHOP, 3 weeks apart, then 2 years of maintenance Rituximab. I"m in the Phoenix area, which just got a branch of MD Anderson Cancer Center. I don't know how it is, but have heard medical professions still say the real MD Anderson is still in TX. I completely agree with your words on our polluted planet. I work in the environmental field trying to reduce pollution. As you know Lymphoma is increasing while other cancers, some of them, are decliniing. Lymphoma used to be an old man's disease. No longer. I have just relapsed after 7 years and realize there ar now choices to be made regarding treatment. "Back then" (2005), there was R-CHOP, R-CVP, now there is so much more, Bexxar, Zevalin, Bendamustine, etc.

     

    I am looking seriously at clincial trials and am hoping to  avoid hard-core chemo as much as possible through MABs, etc.

  • 392. Re: Hi- New to the group
    zazoo Registered Users
    Currently Being Moderated

    Yes, R-CHOP does indeed work! Great news!

  • 393. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Hi all sorry for being away from the group, but after last Rituxan Maint, my wife and I left on a trip top celebrate our 20th anniv a few days later and once back home I came down with bronchitis, sinusitis and to top it all conjunctivitis   after three weeks on antibiotics both oral in injected I am finally over it and back to normal life.  When they say that Rituxan can lower your immune system.. they were not kidding.  Now I am getting ready to get my my 6 month CATs and third to last Rituxan, and dong great with the exception of the last small hiccup in the road of life.

     

    Hi Inga, I am so glad for you... keep up the positive attitude and enjoy each and every day..... CHEERS.

     

    Hi Zazoo, sorry about the relapse,  If it is trial you are interested in, contact MD Anderson in Houston and see what they have to offer (the MD Anderson's popping up around the USA as far as I know are extensions of the one in Texas)  you might have to start in Houston but treatment might be done closer to you.  When I initially went to MD Anderson I had asked to be part of trials, Initially I was heading that way when my NHL became aggressive and was switched to R-CHOP.

     

    Best of luck to all.

     

    Jim

  • 394. Re: Hi- New to the group
    RoyPatti Registered Users
    Currently Being Moderated

    Hi Zazoo, saw your latest, hope this finds you well.    Diagnosed in 1995, in and out of remission over the years, thanks to Rituxan.  Finished maintenance and now I've had two flare ups of my NHL and will be looking for treatment again.  My oncologist currently discussing my case with colleagues.  I have had Zevalin, not sure about Bexxar, but this is the first I've heard of Bendamustine.  I'll google it for more details, and hope that there is something I can use and avoid CHOP.  6 months ago, I had a lump removed and and radiation on the site.  Recently I had another lympnode removed, which brought up the question, of what to do next.  Trying to avoid radiation as much as possible, since I've had more than my share over the last 17 years.  Thanks for the info, and enjoy your summer.  Patti

  • 395. Re: Hi- New to the group
    Inga Registered Users
    Currently Being Moderated

    Jim--my goodness you have been through a lot. It is great to hear from you and so glad you are feeling better. I am so glad the 3 weeks of antibiotics worked and you are back on your feet. So Rituxan can lower your immune system--I did not know that--thanks for letting me know--I'm so sorry you had to find out the hard way. Congratulations on your 20th anniversary! Take care!

  • 396. Re: Hi- New to the group
    Inga Registered Users
    Currently Being Moderated

    Thank you, Zazoo. Patti and Zazoo--please keep us posted, on what you decide. I have heard good things about both RITs (Zevalin and Bexxar) and Bendamustine.

  • 397. Re: Hi- New to the group
    zazoo Registered Users
    Currently Being Moderated

    Hey, what's the latest? Any new options, thoughts, treatments?  zazoo----

  • 398. Re: Hi- New to the group
    Inga Registered Users
    Currently Being Moderated

    Hi everyone--hope you are doing well today. I changed my username, turned 44, and after a 4-day hospital stay for neutropenic fever and a 3-week delay in treatments, I finally got my 5th round of R-CHOP 2 days ago (for stage IV grade 3 fNHL). Just one more round to go--scheduled for Sept 17! Healing thoughts and best of luck to all.

  • 399. Re: Hi- New to the group
    Da2218 Registered Users
    Currently Being Moderated

    hi I am new to this group and all of this. I have recently 4 weeks ago been diagnosed with SZML- I am trying to navigate these threads and need some opinions on
    treatment- Spleen out or Rituxin. Any input is greatly appreciated.

  • 400. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Well lets revive this old post once again.  As posted somewhere else, imam back on treatment after having a relapse to NHL refractory to Rituxan.

     

    New treatment is a phase III research protocol, based on Bendamustine plus GA101.  Only side effect right now is nausea and quizzeness  treatment will last 6 months followed by 2.5 years maintenance with GA101.

     

    Will report back soon, have another treatment this week, hope I do not grow tails and whiskers.

     

    Hope all are doing well.

     

    Best

     

    Jim

  • 401. Re: Hi- New to the group
    Teddybear Registered Users
    Currently Being Moderated

    Hi Jim,  sorry about the relapse.  I came on the board just before you left and your posts taught me a lot and so made me giggle.  I hope the trials continue to go well and the side effects are minor.  I don't know, tails and whiskers could be kinda cute!   Good luck  Nancy

  • 402. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Will report back frequently, I want my experiences to help others, and if trials can help get us closer to a permanent treatment and they can learn from me, then that would be great.

     

    My wish is that others never have to experience or go through what all of us have, to many good people have walked these roads and to many people have left us much to early.

     

    Best

     

    Jim

  • 403. Re: Hi- New to the group
    mcee Registered Users
    Currently Being Moderated

    Hey Jim --  Courageous friend.  Bendamustine must be a very good thing, I've sure read a lot of positive stories about it.  GA101 must be the wild card they are testing, hoping it does a hi-octane thing to the benda.  You are in some of the best hands in the country, they will watch you like a hawk and I doubt they would put you into a trial that doesn't have any cred.

     

    I also read that Bendamustine does not cause baldness, so, you won't have to bring outall those cute little avatars you used.  Unless you want to, of course.

     

    Gads, I am at my 2 year mark, depends on if it is measured from first infusion (2 yrs since Oct.'10) or final infusion, early Feb. '11 (like, next week).  All I know is I've not had a CT followup since August '11.  Odd perhaps, or could be since I'm constantly feeling better, and my blood work shows nothing, and I did have that one node in my neck the radiologist remarked on check with ultrasound a couple months after the CT in Aug. '11, and nothing was there....perhaps my onco was saving me from radiation?

     

    I saw an endocrinologist a few weeks ago for an unrelated issue and she palpated my neck and collar bone area and felt nothing.  I thanked her, profusely, she knows I'm sure, the stress of all them lumps and bumps means self-checking might set off false alarms.  She even said my thyroid felt very very normal (it was big before RCHOP).

     

    I get a scan in March now that I am off the Rituxan maintenance (quit at 10 treatments due to an evil insurance company demanding a second full out of pocket, but 12 is not a magic number, really).  

     

    I figure I'm going to load up on lorazepam (after that long and painful weaning off it the stuff...but....) before I go in to get the results.  'til then, I'm golden.   

     

    I'm glad the GA101 is not causing more than nausea and such.  Can you take somethign for the nausea?  I know the anti-nausea pills we all got during RCHOP were excellent (but costly).  So hoping this is something you can handle and keep on being the inspiration you are to us all.

     

    Keep us posted please, as you can.  We're all praying and cheering for you, you know that.

     

    mcee

  • 404. Re: Hi- New to the group
    jgold Registered Users
    Currently Being Moderated

    Hi Mcee:

     

    I am doing well, GA101 hasn't caused any side effects at the moment, Bendamustine is the agent causing nausea and quizzeness. So far blood work is ok, and if I compare his treatment to RCHOP. It is mild.  I will say that the biggest problem is a little tiredness.

     

    I have had a treatment every week for the first month, then I go to once a month for the remainder.

     

    One interesting outcome of having a relapse....  My employer is forcing me into early retirement once I finish my FMLA.  Talk about caring people.  OH well might volunteer at MD Anderson and do consulting work.

     

    Best

     

    Jim

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