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Homepage – Forum Forums 2nd Time Around with Bladder Cancer The Beast is Back!!!!! Third Rodeo is About to Begin…..

Viewing 13 posts - 16 through 28 (of 28 total)
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  • #43773
    marysue
    Participant

    Thank you everyone.  The difficulties this time around seem like cruel and unusual punishment in some way but Danielle you are right.  I believe that the antibiotic will make all the difference.  I’ve just taken my third dose and hopefully it will start kicking out the Strep infection soon.

    I just hope that the pathology results will be favourable.  It has been a really rough year for myself and my family on so many fronts.  We did not need this.  However all of you at BCC help make all the difference.  Many thanks once again.   (((HUGS)))

    #43816
    Danielle
    Participant

    Hi Mary Sue,

    Thinking of you and truly hope you’re feeling better and your pathology report is in with good results.

    Stay in touch.

    Danielle

    #43817
    marysue
    Participant

    Well, my rodeo continues to be a rough ride.  The antibiotic prescribed for my Group B Strep infection did not work so I’m now starting a second one.  Here’s to hoping that the second antibiotic will work better and I will feel less crappy soon.  The ideal antibiotic to treat this infection is ampicillin but my guts don’t like penicillin so we are trying other alternatives.

    On a semi positive note, my family doctor was able to phone in and get my pathology results.  The winner is another round of urothelial carcinoma with a side twist of adenocarcinoma mixed in this time.  The bright side is that it was very localized with no progression of any type.  Now if only I could reach my urologist to discuss next steps.  I’m truly hoping that with the Epirubicin as a post op treatment it will be a one and done scenario.

    On a second semi positive note, I’ve been free of my catheter for 2 days now….hopefully my bladder will continue to cooperate.  I believe getting rid of the strep infection will go a long way to helping me feel better.

    Note to self – bladder cancer can be tougher when you are older, don’t get it if possible.

    #43819
    Danielle
    Participant

    Oh man Mary Sue….you’ve certainly had a time of it, but there are some definite positive swings to all this as you’ve outlined.  Hopefully this new antibiotic will do the trick for strep infection and the single chemo treatment will kick the crap out of this sucker!  Also hoping your urologist will be in touch soon to discuss your next steps going forward.  It’s the waiting and wondering that’s so frustrating.

    Thinking of you….you’re very strong and positive, which I think can be half the battle, along with family support.

    By the way, you are allowed to kick and scream a bit too…it does help release some of the frustration with this “nuisance” disease.

    Sending (((HUGS))) your way….🤗

    Danielle

    #43821
    marysue
    Participant

    Hi All:

    Question for people – I’m now losing a lot of hair.  This AM when I showered tons of hair came out and I was covered in it.  When I towel dried and gently brushed my hair enough came out to start a wig. My uro did tell me that I wouldn’t lose my hair with the Epirubicin but now I’m starting to wonder.  I’m also wondering if it is the shock from the surgery and the complications I’ve had.  Has anyone else experienced hair loss after a TURBT or RC or Epirubicin?

    My hair was pretty long down past my shoulder blades.  I loped it off to my shoulders this AM after my shower with plans to go to a hairstylist when I feel better.  I did it in hopes of slowing down the hair loss or at least not have as much hair around the place.

    I’m definitely raising this topic when I finally get a hold of my uro.  If anyone has any info or suggestions, I’d appreciate it.  Thanks.

    #43822
    Danielle
    Participant

    Hi Mary Sue,

    I didn’t think intravesical chemo caused hair loss, but maybe your iron level is low, which sometimes can cause hair loss, along with the surgery and complications you’ve endured.

    I admire your strength and courage….you’ll get through this.

    Take care and thinking of you.

    Danielle 🤗

    #43826
    Nightingale
    Keymaster

    Gosh MarySue,

    I am so sorry to hear about your predicament.  I hope your medical team can help you overcome your issues.  Keep well and think positive – you always do!

    Thinking of you and sending you positive thoughts!

    My best,

    #43828
    marysue
    Participant

    I called my uro’s office yesterday to ask when I could speak to him and was given a phone appointment for the 3rd of November.  His secretary told me that he may reach me before that as I’m “in the queue” to be called although she could not tell me where I was in the lineup.  Apparently as of yesterday he had 89 calls to make.

    I am feeling a bit better, but the infection is not quite gone yet.  In addition to everything else I now have a yeast infection to contend with.

    I feel like my body has completely rebelled and is punishing me for the surgery and treatment.

    I do have the support of Home Care who have been checking in with me regularly and I can call them anytime if my bladder acts up or I have any other concerns.  My bladder was a bit glitchy earlier today and I followed their advice of increasing my liquid intake even more and it seemed to work.  My output increased and I felt my bladder empty properly.  I do not want to have another foley installed because if that happens it has to stay in place until I finally get in touch with my urologist as he will have to make the decision about when it would be removed.

    AS for the hair loss Danielle, you could be right about it being the stress from all the surgery and complications.  I did read it on the Internet and will check with my uro when he calls.  I bought a liquid iron supplement at our local health food store that I’ve taken before for post op recovery.  My poor hubby had to struggle this PM to get all the hair out of the shower drain as it was clogged up.  Next time I wash my hair I will put the plug in and scoop the hair out of the water before letting the water drain out.  Hopefully that will help and that the hair loss will slow down real soon.

    Thank you all for your words of encouragement and support.  This was one journey that I could not have done alone.  My first 2 TURBTs were uneventful recovery processes.  I guess this time around more than makes up for it.  I’m thinking that the Epirubicin has a lot to do with it and maybe because I’m 12 years older as well.

    Well, all I can do is absorb all your positive thoughts, prayers and good wishes and “Keep Calm and Carry On.”  ((((HUGS)))) to all.

    #43829
    Danielle
    Participant

    Hi Mary Sue…as you can see I’m still up as well, but 12:30 here.

    You can get a strainer type plug for your bathtub drain from Canadian Tire or Walmart.  They come in different sizes usually in a package of two.  It will catch the hair.  Hope that helps.

    Sometimes an antibiotic will cause yeast infections….it cures one thing, but kills the normal flora in your lady parts….poor you, not fair…you are courageous and strong girl.  This too shall pass….sending (((HUGS))) your way.  Try and sleep.

    Danielle

    #43830
    marysue
    Participant

    Hi All:

    I just spoke with my urologist earlier and he did tell me that it is most likely the Epirubicin that is the cause of all the grief.  And it may take weeks for my bladder to heal.  Acupuncture here I come!

    My situation is a good news/bad news scenario.  The good news is that it was caught very very early but the bad news is that it is carcinoma insitu which is more serious than a papilliary cancer.  I do have to do more BCG but have begged off until the end of November to give my bladder more time to heal.  Right now it is looking like another 15 BCGs are in the works for me.  I need to get my bladder healed prior to the start of these treatments otherwise it will be hell.

    It turns out that my cytology is clear and I can stop the current antibiotic which is the good news since I now have diaherrea from it.

    My uro will be prescribing Flomax to help my bladder relax and release urine a bit better.  My bladder is not always cooperating and I don’t want to have to have a catheter in again.

    And after all that I forgot to ask him about my hair loss!!!!!  Oh well, I guess we can’t have everything.  Thanks for the hugs.  I really need them today.

    #43905
    Tana
    Participant

    Dear Marysue;

    I haven’t been on the forum for months and I kept hearing your name and thought I’d check in.
    oH No:
    I am so sorry to hear about your recurrence and the roughride through the wringer you have just been through.
    You are an amazing lady how you’ve been helping us all with your knowledge and positive words. I know because you’ve helped me.
    I am giving you a ton of huge hugs for you. And
    Sending lots of loving light 💞.

    All the best for you Marysue- you are in my thoughts and I am sending you positive healing thoughts for you in every way.

    Oh one thing- would probiotics be ok for to be helpful for your gut after all what you are taking ( the antibiotics etc) ? Just a thought .
    Tana

    #43906
    marysue
    Participant

    Hi Tana:

    Many thanks for your positive thoughts. I appreciate that so much. As for the probiotic, I’ve been taking Align for several months prior to my surgery. I did have to stop all vitamins and supplements 7 days prior to surgery which I did. It took me quite a while to get back on everything as I had so much nausea post op due to the Epirubicin. That drug is definitely not for the faint of heart.

    Once I got into mid November I started feeling much better and got back on everything including the Align. My gut is functioning much better and the yeast infection is history.

    An update for you and everyone:

    Many thanks to all who have sent messages of positive thoughts, prayers and support. As I mentioned before, that means the world to me. I have started into my BCG treatments having done #3 out of 6 yesterday. I felt the side effects of general flu symptoms, fatigue and bladder irritation more this time around but pain killers, lots of water and an extra nap this AM have done a lot to help me feel much better.

    I do have to do 15 BCGs on top of the Epirubicin which is a lot but I’ve been down this road before. The timeline is very similar to what I did in 2010-12. I will finish the set of 6 on January 13th. My next cysto is March 16th. If all is good at that checkup I will start my first set of maintenance treatments late March/early April. If my timeline follows my previous one my next cysto should be in May and then the second set of BCG maintenance will be in late May or early June. After that it will most likely be a cysto in September and maybe another in December before I do my final set of 3 in either December 2023 or January 2024. This is all based on no recurrences.

    I’m trying to stay positive as BCG has a decent track record against CIS. I’m also hanging onto the hope that all the pain and suffering from the Epirubicin was worth it and it knocked out any remaining cancer cells post op and now the BCG will do its job and stimulate my immune system to help prevent another recurrence. I’m hoping for this to be my last TURBT and will at some point get back to once a year checkups.

    I had a conversation with my uro a couple of weeks ago and asked about the hair loss in addition to some other questions. He didn’t have a specific answer but said it could have been the extreme stress I was under or in rare cases he did admit that due to the huge amount of inflammation in the bladder from the drug it can seep into your bloodstream. He didn’t know if that had happened in my case but to me that seems the most likely scenario. It would also explain the nausea post op and the extra fatigue. The hair loss has subsided so I’m hoping at some point my hair will thicken up again. I usually have a faster spurt of hair growth in the summer months of when I will get a break from BCG treatments so here’s to hoping. At any rate it is a moot thing compared to having to get rid of the cancer. What I did notice is that my remaining hair is a darker grey colour. Previous to the hair loss I had a multi colour thing going on with a mix of what dark brown was remaining and it was mixed with dark grey and white. It was the really white and dark brown hair that fell out the most. It will be interesting to see what happens to my hair in the months ahead.

    Anyhow, I think that is my update for the moment. #4 is next Friday and then I will get a 2 week break for Christmas and finish the last 2 in early January. Not having to go to the clinic for 2 weeks is a great Christmas present. ((((HUGS)))) to all and thanks once again for all your support.

    #43923
    Tana
    Participant

    Hi Marysue-

    Thankyou for your update.
    yes we talked before about our attitudes – to stay positive- You got this!

    All the best- and happy holidays- best gift is Cancer Free!

    Many hugs dear lady;

    Tana

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