anyone dealt with "C DIFF " during RC recovery?

Hi Holly
I started chemotherapy about five weeks after surgery.I have no idea why they chose that regimen my case was put before the oncology board when they had the path results and that was what they came up with.
We all have low days I certainly have there were times when I was too low to even cry for help here.Like you I went from one extreme to the other.In June I was a successful career women balancing a responsable job with three beautiful children planning a fourth and living looking back on it a golden life.Three months later I had no bladder was menopausal had a urostomy was bald and couldnt even look after myself let alone the children and far less go to work.There were some days when I just wanted them to let me die and only the thought and love of my family and friends kept me going.You have gone through major surgery the shock of your diagnosis and are now being hit by a serious infection when your body needs all its reserves to repair itself from the surgery. Be gentle on yourself you are bound to feel low,angry and all those other emotions you would be mad not to.
Its now almost nine months since I started treatment.Lifes OK again different certainly but OK.I barely think about the stoma and dealing with it is normal now.I am planning on going back to work in June and have negotiated three days a week at least for the first six months.My hair is starting to grow back and my energy levels are increasing daily.My perspective on life has changed completely before my diagnosis I expected everything as my right and took so much for granted.Now everything is a bonus I really appreciate everyday things.My relationship with my parents is much stronger they were absolute rocks when I was ill.Before I was so busy rushing around having it all I was lucky to see them once a month .Having cancer has made me slow down and appreciate the smaller things in life and whilst I still love the big things it nice to be a bit slower and take a bit more time out to enjoy things.
Gosh this has turned into another of my rambles what I really want to say is crying shouting and screaming is normal for where you are now.In six months all being well you will be able to look back and think this is Ok I have got through this and learnt from it.The good days will start to out number the bad and you will be Ok.
Take care lots of Love Claire

Hi, Holly
I'm sorry you are having a rough time. Hang in there. It does get better. My husband has a similiar diagnosis. He had his RC in October and completed chemo 3 weeks ago. He had
cisplatin and Gemzar. The oncologist at USC Norris said it was definitely the best choice for his situation. He's milestone of recovery was being able to enjoy coffee again without feeling queasy. He is back to working out with the trainer and is lifting much heavier weights then me. We try not to think about the statistics but it does occasionally haunt us. Here"s to today being a good one. My co-worker use to say we call today the present because it is a gift. Good luck and stay healthy!
Ann

Hi friends....

  Well, this chick ended up in the ER again Wednesday...the c diff came back so hard and fast I couldn't even hardley move. Now I am on the vacomycin? antibiotic and they stopped doubling the bentyl. My neo bladder is working great....during the day I take a full pee every two hours just as I decide to do. At night isn't so bad....Iwake up atleast every 2 hours and sucessfully pee (mucus and all) and rarely have wet "pull ups" . It is just the bowels not getting over the c diff and the surgery it seems. At Mayos they did not have me learn how to self cath....they had me pee a few times then did ultra sound to verify I fully emptied and called it good. I do the probiotic drink every day and yougurt too. It has helped. Tomarrow my Mom wants me to get on Shakley vitamins - she has taken them over 20 yrs. Ya know - my Grandma had colon and uterine cancer back in the late 1960's (when she was in her 40's). She fought 11 years when treatments were quite barbaric as compared to today, she swore by them too.  I am doing my best to gain back the almost 20 pounds I have lost... and I make everybody wash their hands upon entering my home! The c diff must not come back!! I can lose 7 pounds a day to that
  Claire - those grim numbers are what I have been told also...I wonder why they are recommending gemzar and cisplatin for me instead. Did they do any sensitivity testing or have any reason for the combo they used? How long after rc before chemo started? At the rate I am going it will likely be 6-8 weeks out before I can start chemo - is that late?
   By the way, today I had a mental breakdown - I was dusting some framed pics in the house and just started bawling. I decided to get a headshrinker to help me cope. Just yesterday my Mom took me to apply for social security benefits - they said they will be
mailing checks this summer. I think antidepressants may help after all. 5 monthes ago - I was glowing bride with an impressive career going. I think I am still in shock sometimes.
   Overall, I know there are lots of folks who have it worse, forgive me for complaining. Some days just are harder than others I guess. Love you guys, praying for us all, Holly

 

Hi Holly
I was where you are now exactly the same diagnosis and my consultant strongly recomended chemotherapy.I dont know what grade you were given I was 3/4 very aggressive which made the prognosis worse.His statistic quotes were grim and even with chemotherapy my chances of being disease free in three years were around 40% without less than 20%.He countered that by saying these figures were with older chemotherapy regimes and in patients who tended to be in there 60s and 70s but all I could see was that 2 out of 5 was better than 1 out of 5 and I had to give everything a shot.
The chemo was very do able I managed to maintain some sort of 'normal' life through out but they did blast me with much higher doses than normally used in older patients.I tried to record how it went as it went in my story board just because after the event its hard to remember what it was really like.
Some data you read states that the side effects from the chemotherapy are more likely to effect how long you live than the bladder cancer and my oncologist did discuss this but again said that it was hard to judge because most patients are older and have more difficulties coping with the treatment.He sold me by saying if it was his wife or daughter he would recomend chemotherapy.
I had Cisplatin, Methotrexate and Vinblastine so its a completely different regime to the one your doctors are recomending and the side effects will be different I managed 5x21 day cycles but had transfusions and all sorts to keep me going.If you do decide to go ahead I would strongly recomend getting a port or central line fitted it saved loads of time trying to get lines in and when your already feeling pretty fragile the last thing you want is prodding and poking.
If I can help at all please shout I am very aware that every case is different I try to check on here once a day so will see your post.
  Love Claire xx

Holly,

I haven't faced your situation, so I don't know whether I should weigh in here.  However, I was kind of faced with the same dilemna when my doctor sat the fence over my BCG treatments and left it up to me.

The bottom line being whether or not I wanted to give up 15% more chance of non-recurrance by not taking treatments.....I felt like it was like that grade-school story, "The Lady or the Tiger".   The door that you choose will be the most important door.  

If there is a 30% improved chance of non-mets/non-recurrance, I can't help but think that you should take the chemo.

Clur is the one that you need to talk to, as she has been exactly where you are, and she has gone through the RC and the chemo afterwards. (And all this very recently)

If she doesn't weigh in soon, maybe you could give her a PM.

You sound like you are doing pretty good.

Your friend,
Rosemary

Hello Friends....Ihave been to Mayo's yesterday and now I am TUBELESS! Feels good to just get my pull ups on and go! LMAO
They did the cystogram....and neobladder looks great. I can pee again:) On Sunday night I got the diareah again so they are culturing to see if c diff is back. Thankfully I have Bentyl again to control it. I lost 7 pounds in24 hours. I also met oncologist -he said he was suprised at how knowledgable I am on this disease stage and ranges of treatments. Naturally I told him about the cafe here and how much everyone here helps each other. Here is the final thoughts he left me with...
 He said with the dx stage 3aN0Mx that doing cisplatin/gemzar is the chemo of choice. And with my past history it would be an option to do 4 monthes of 4 week cycles. It could increase my overall survival rate 30%. But on the other hand, he also said it would be medically acceptable to bypass chemo at this point, and do CTs and scans in 3 months if Ihave any reservations of going thru chemo. Basically he sat on the fence and asked me what I want to do.

  My thoughts....If they know the cancer got out the bladder wall but no positive lymphnodes - why wouldn't I get micro mets mopped up rather than wait to see where they show up? They tell mets or recurrance will be fatal...but that chemo is a choice. If feel like I am getting double talk from a politianrather than a dr. I want to live..If chemo will mop up micro mets I think I need to do it. Please give input. Iam trying to get healthy again so I can be chemo ready. I have followed my guts to get me to the right drs and get this far...and I was right. I would hate to make a big mistake now. Love you all, Holly