Bummed

onlytoday
onlytoday Member Posts: 609 Member
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi all,

Well, it seems that my onc and my gastro doc are both thinking that the lymphoma is not only in my stomach but also in my small intestine. Have had diarrhea since the first week of December - losing weight. Having a capsule endoscopy Monday. Hopefully that will confirm or deny this. My onc mentioned Treanda as a possibility for treatment. Question: Who out there has had Treanda alone? Side effects? How long did it take to work? Did you have to go for all 8 treatments? Anything you can tell me about it would help. Did anyone have it with anything other than Rituxan?

Here's the thing. I am so sad that this is happening so quickly. Finished Rituxan only treatment in September and here we go again.Can't have Rituxan with the Treanda, I'm allergic to the Rituxan, had a bad reaction(went to ER) on the last day of treatment. My remission wasn't real.

The biggest bummer of this is that my daughter is getting married Oct 9 and I worried about how I'm going to feel. The good news is Treanda doesn't seem to cause hair loss! Yay!! The bad news is seems that it can really cause severe fatigue which gets worse with each treatment. (For some)

I am not trying to be negative- just concerned. I don't want this to effect my daughter's day in any way. I would also prefer for it to not effect our planning, which we are in good shape with. Of course I also always wanted to be able to fly - so I guess I better face some reality!! Lol

Thank you for listening. Love you guys, don't know what I would do without you.

Love,
Donna

Comments

  • yesyes2
    yesyes2 Member Posts: 591
    #2
    Meeting
    Oh Donna,

    I am so very sorry that you didn't have a more positive outcome from your visit with your Onc and Gastro doctors. You have been suffering, and I do mean suffering, with diarrhea for way too long. Your concerns are very real and you would have to be totally out to lunch not to be having them. No way are you being negative. Your recurrance is totally not fair any way you look at it.

    My recurrence after Rituxan only treatment was anywhere from 7 to 11 months after I was told I was in remission with a negative PET. Remission 4/2008, clean PETS 4/08, 7/08, clean CT 12/08. Than experienced problems in 3/09 with positive scans in 6/09. As my cancer was aggressive I was treated with RCHOP. I do know the feel of knowing you have a recurrence. I have no experience with Treanda. But at every NHL conference I have attended I have heared that the medical community is very excited about this treatment. I hope someone who has had it will respond to you soon.

    Try and get some rest tonight. Thinking of you with love and blessings,
    Leslie
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #3
    Sigh...
    Dear Donna,
    I just took a deep breath and sighed after reading your post. I am so very sorry all of this is happening to you. You still have a little over 5 months before the wedding. I'm going to think good thoughts that if you do have to start treatments, the worst will be behind you by then. Until you know more, I'll be keeping you in my prayers. Yes...the timing really sucks, darn it. Much love...Sue (FNHL-2-3a-6/10)
  • forme
    forme Member Posts: 1,161 Member
    #4
    So sorry
    Hi Donna,

    I am so very sorry to hear the latest news. Thats a lot to deal with. It does sound like your doc is on the ball and that you have a plan forming. Gosh, I wish it were easier for you right now. So many are going through a real rough time.
    I know that Fran is doing the treanda right now, she would be a good one to ask more detailed questions.
    I'll pray that things go easy for you and that by the time your daughter is ready to wed, you'll be feeling fine.
    (((hugs)))
    Lisha
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #5
    sorry
    Donna so mad and sorry to hear this, try not to get ahead of this until all your test's are complete. Praying for the best...... Vinny
  • Michele23
    Michele23 Member Posts: 168
    #6
    vinny59 said:

    sorry
    Donna so mad and sorry to hear this, try not to get ahead of this until all your test's are complete. Praying for the best...... Vinny

    Doing Treanda
    Hi Donna,Gee that stinks big time.Anyway I have done over 40 "total" treatments with Rituxan alone.No major side effects here.Just finished my {4th round} of Treanda/Rituxan April 18th&19th.The treatment is working but the Treanda side effects may be too much for my body.I posted some of the side effects down thread.The rash and itching are really doing a number.They say no hair loss "BUT" my hair is getting thinner and thinner.Each day my brush has a half handful of hair.My onc wanted me to complete 6 total treatments and I have read where many do 8.So with that said maybe Treanda will work well for you since Rituxan caused you such grief like Treanda is causing me.If you have any more questions feel free to ask.Good luck.Blessings to you,Michele DX95FNHL3
  • dixiegirl
    dixiegirl Member Posts: 1,043 Member
    #7
    Michele23 said:

    Doing Treanda
    Hi Donna,Gee that stinks big time.Anyway I have done over 40 "total" treatments with Rituxan alone.No major side effects here.Just finished my {4th round} of Treanda/Rituxan April 18th&19th.The treatment is working but the Treanda side effects may be too much for my body.I posted some of the side effects down thread.The rash and itching are really doing a number.They say no hair loss "BUT" my hair is getting thinner and thinner.Each day my brush has a half handful of hair.My onc wanted me to complete 6 total treatments and I have read where many do 8.So with that said maybe Treanda will work well for you since Rituxan caused you such grief like Treanda is causing me.If you have any more questions feel free to ask.Good luck.Blessings to you,Michele DX95FNHL3

    Crud, crud crud
    Oh man Donna, I am sorry to see this but it does seem like your docs are on top of it. Keep your head up when you can and lean on us when you need to...we'll be here.

    The docs I have talked to are excited about the results of the Treanda.

    Take care,

    Beth
  • miss maggie
    miss maggie Member Posts: 929
    #8
    Surprised
    Dear Donna,

    Not a good way to start my day on this site.

    Oh yes, I agree. Just a few months from remission Jan 2011, to now April 2011.
    The good news I suppose. Hopefully it has been caught in it's infancy. You say
    "8 weeks of treatment with Treanda" Is this every week? If that's the case, I would
    think you will be ok by Oct. Or if it's spread apart, maybe they would skip a treatment
    or two before the wedding.

    We love you too. Me too, don't know what I would do without this site and all.

    love maggie

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