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  • I was wondering something

    Posted by susant on July 25, 2008 at 4:51 am

    I have had the bcg treatments , 6 of them. Last one made me really tired for a couple days. But I am still tired more it seems. Could it still be from the bcg?
    How long does that stuff keep making your immune stuff do it’s thing? Is it something that will work for weeks after the treatments are done?

    And does the immune system working maybe make you tired? I feel real good. Just i need naps now and then .

    hope everyone is feeling good :)

    sarahlee replied 16 years, 6 months ago 9 Members · 13 Replies
  • 13 Replies
  • Sarahlee's avatar

    Sarahlee

    Member
    July 27, 2008 at 4:31 pm

    susan, hey your not a complainer,and this is the place to let it all out,Id just like to see you a lil happier about where your at, take care and good luck:) I dont think we are rewarded for fittness other than as tough as things can get it would be so much worse if ones fittness level wasnt good,and being fit is good for mind so keep active you arebetter off because of it.

  • susant's avatar

    susant

    Member
    July 27, 2008 at 3:27 pm

    I’ll be ok, and I am happy most days and don’t think of it much. Just like my diabetes and heart problems. Not much I can do but try.

    I do go out everyday or keep busy around the house with my animals and my hobbies. I also am better shape now than ever. i think that is what makes me mad at times. i worked hard to get in good shape and i am rewarded with bladder cancer :angry:

    But I will try not to be a complainer. Sometimes i just get scared.

    thank you all for your advice :)

  • Sarahlee's avatar

    Sarahlee

    Member
    July 27, 2008 at 1:39 pm

    :) Susan , I to can feel just as bad about this whole thing as you, but only on the days I choose to.I ve found that for me if I get out every day and live it up every min, I dont even think of it at all, like I jump rope walk run ride my bike play tennis swim,sometimes all in one day:) crazy right :cheer: , but I feel best those days , and days I rest those are the days I might think of this thing usually its some one saying how are you feeling in that you poor thing voice , I know they are being kind, but look Im in better shape than most 55 year olds I was in good shape befor dx but now I work harder and Im stronger now when Im tired Im pretty sure its because its because of what Ive done and not from something going on inside of me.I can have those worry days if I allow them so bad I pee in white cups so I can see the undiluted urine better. thats crazy too:laugh: its all what we make of it. I just dont want to waste my time , worry is a waste, I try this sometimes its a worry exercise thik of something say a white cat. ok now stop.

  • dib's avatar

    dib

    Member
    July 27, 2008 at 3:05 am

    Amen.


    Male Dx T1G3 5/08 @ Age 59. TURBT 5/08; TURBT+40 mg MMC 6/08; BCG (6) 7/08-8/08; Cysto & TURBT 9/08; BCG Maint(3) 10/08, 3/09; 7/09; 11/09; 5/10; & 1/11. Clean cystos 2/09, 9/09, 3/10, & 10/10.
  • grampadonut's avatar

    grampadonut

    Member
    July 26, 2008 at 8:00 pm

    susan , please remain strong..we will all get thru this awful time
    peter


    grampadonut
    dx t2-g3
    05/07/08
  • nix's avatar

    nix

    Member
    July 26, 2008 at 5:36 pm

    Susan,
    I know,it took me quite a while to wrap my brain around the whole BC thing! One doctor actually said “Doctors used to say ‘here comes long term money’ because BC is a life long desease”. Believe it or not, that actually made me feel better, because I know a lot of cancers that are swift and deadly. So, everytime I have to start BCG Maintenance, I am thankful that I don’t have to do chemo (with drugs in our blood stream) and marvel that so far BCG is working :). Rosemary is so right, as long as you feel you are doing all you can, it gives you a handle on the road ahead. Rosemary has helped me so much on my journey.
    Just know, we are all with you – with BCG – and the good times of the all clear scopes!


    Nancy S
    Ta CIS
    dx Ta 11/06
    dx Ta CIS 10/07
  • rosemary's avatar

    rosemary

    Member
    July 26, 2008 at 3:19 pm

    Susan,

    I know how you feel. When I was first diagnosed with Superficial Bladder Cancer, my co worker brought me a “Cancer – Relay for Life” T Shirt. Although
    I’m sure that she meant well, I really didn’t want the shirt. I felt like she was saying, “Tag, You’re it.”

    I want you to do something today. I want you to do just one thing for your health that will make you feel less helpless in this situation….maybe buy yourself some garlic tabs (recommended while on BCG protocol) or some green tea, or take a twenty minute brisk walk….

    I’m heading out the door now to go to market to find some local honey and some squash to make a nice casserole…and…I’m wearing my Relay for Life T Shirt….

    Take care…please do something to make yourself feel better….

    Ro


    Rosemary
    Age – 55
    T1 G3 – Tumor free 2 yrs 3 months
    Dx January 2006
  • susant's avatar

    susant

    Member
    July 26, 2008 at 2:27 pm

    i’m sorry ,but it makes me cry that there is still such a long road ahead of me. I want it to be gone! :( It’s so hard sometimes .

  • Sarahlee's avatar

    Sarahlee

    Member
    July 25, 2008 at 10:36 pm

    Hey Susan, Im on my way to the check up in Aug, that follows my 6 treatments we are at about the same place in time ,with me a few weeks ahead of you , I think I will be getting the extra BCG too, at 3 weeks a pop. I hope this stuff works ,just like everyone. atleast theres hope:) and other than being tired it wasnt so bad, more worrysome, I guess it just continues,thank goodness for that.to continue is a good thing.best of luck:)

  • pemquid's avatar

    pemquid

    Member
    July 25, 2008 at 7:46 pm

    Susant and Alan–
    I’m following close behind you, in that I will very shortly be staring my initial round of 6 weekly BCG treatments. One of the fairly standard protocols, which is the one my uro uses, starts with 6 weekly (induction) treatments, a 3 months re-check (cysto) and 3 weekly maintenance treatments, and after that, each 6 months you get 3 more weeks of maintenance treatments, up to 3 years (with yearly maintenance treatments after that if you are in a higher risk category). You still get check-ups every 3 months during this time I believe. I’ve read that if the BCG side-effects start to get too severe during maintenance treatments, they reduce the concentration of the BCG and still have the desired effect on your bladder’s immune response. (This protocol is sometimes called the the SW Oncology protocol, or Dr. Lamm’s protocol.)

    Ann


    Small TA Grade 1, May-06; recur (2 tiny), same, June-08; TURBTs both times. BCG begun July-08, dosage to 1/3rd May-10, completed treatment December-11. All clear since 2008.
  • Alan's avatar

    Alan

    Member
    July 25, 2008 at 4:28 pm

    Susan, I am on the same pace as you. just finished 6 initial. My uro does those and waits 6 weeks then another 6 and that is it. Some uros insist on 3 as a maintenance. The studies I hane seen both have pros & cons and basically give similar statistics. But, who really knows as there is a lot they don’t know! At least my uro is honest about it. Heck, they don’t even know WHY BCG works! Other than it stimulates the immune system.

    Yes, I had “mild” fatigue after #4-5 & 6. Just took naps. Low grade fever for a few hours after #2. That was all the side effects other tham mild discomfort from the cath. Hate to sue stats but 80%+ it works. The downer from what I have read is 30-50% is the probablity that at some point it will come back. Thus a need to repeat & all the checks.


    DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
  • susant's avatar

    susant

    Member
    July 25, 2008 at 2:00 pm

    Does everyone usually have to do it all over? :( I thought maybe i could be cured sort of with the ones i had . :huh:

  • slabman's avatar

    slabman

    Member
    July 25, 2008 at 6:31 am

    Suz, I get the fatigues while doing the treatments but after I finished the first 6, I began to go without those naps. I did the second maint. last Tuesday( #8) and it seems like my fatigue is getting better even though I’m in the middle of this round. I think you’ll find it’ll improve as you get away from the weekly treatments.

    PS…I can’t believe it’s been that long since you started and were so worried and now here you are with 6 of ’em under your belt. But then there’s a long way to go for most of us. B)


    Bob
    T1 G3
    Age 66
    DX April 2008
    TURB April 2008
    Last BCG (#15) April 2009

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