CSN Login
Members Online: 11

valrubicin

indyjam
Posts: 8
Joined: Feb 2010

I have just learned that my bladder cancer (C.I.S.) has failed the BCG therapy and now face the options of bladder recon surgery. My MD's (Indiana University Urology) have offered one more hope before the surgery. This is VALRUBICIN instillation in the bladder for 6 weeks (similar schedule to the BCG therapy). Does anyone have any experience, success, stories, advice about the VALRUBICIN? I greatly appreciate any info you may have! Thanks in advance everyone. Go Colts!!
Jean

glassman44
Posts: 11
Joined: Jan 2010

Jean:
It looks as though you and my husband, have a similar reaction to the BCG treatments. He has been in treatment for the bladder cancer since 2006, having the BCG treatment. (He had a biopsy in Oct.2009, after 6 months on maintance of BCG) He will be having another scope, to see how the cancer has progressed on 2/19/10. With the cancer back, Our uroligist referred us to the Mofitt Cancer center in Tampa, Fl- wanting Warren to have his bladder removed. We have been on a roller coaster ride, deciding what to do. We asked is there nothing else we could try, before the aggressive surgery, then we found out about the Valrubicin. We have an appointment 2/19/10 for another scope to see how the cancer has progressed, and we will at that time start a treatment plan of the Valrubicin. I would like to know also, how it goes with you. Any feedback at all will be helpful in this fight....we hope to hear from you soon. Good luck!!
Mary & Warren

indyjam
Posts: 8
Joined: Feb 2010

I have been with you on that rollercoaster ride. I have not started the Valrubicin treatments yet, I am waiting on appt schedule - will probably hear something this coming week. I will keep you posted. It sounds to me like, although the Valrubicin may offer hope, it is only postponing the inevitable - bladder removal and diversion surgery. I would like to keep my bladder as long as possible - so I will try this Valrubicin once. My fear is that I'm not getting younger (I'm 75) and I dont want to wait too long for the surgery. Also - I have tossed and turned at night trying to decide which type of urinary diversion to have made. I'm leaning towards the standard ileal-conduit urostomy. We'll see. I'm sure you have faced similar decisions. Good luck to us all!! I'll see you here on the board!
Jean

glassman44
Posts: 11
Joined: Jan 2010

Jean:
Warren has appointments set for 3/02/10, each Tueday, for 6 weeks, to be injected with the Valrubicin treatments. Warren went for a cysto on Friday, 2/19 and early Saturday morning, he awoke me with "I can't pee" off we went to the emergency room and he was catheterized. (this has happened in the past, after each biopsy, but never after a cysto.) Monday, I called his Doctor and he had me remove the cath on Tuesday morning......and he is fine now. Hopefully all will go well during treatment. I will keep in touch. How are your's going?
We have scheduled another biopsy for June 7, and we will know at that time the next step.
We are in hopes that the treatments will help, but like you said, the inevitable is removal of the bladder. We will cross that road when we come to it. Good luck to us all!!
Mary & Warren

indyjam
Posts: 8
Joined: Feb 2010

Hi Mary & Warren:

I will recieve my first Valstar treatment on March 10th, I had to wait a little longer to be at least 6 weeks after my last cysto and biopsy. I'm hoping for the best too. My MD says there is about a 25% chance this will hold the cancer in remission, I can only hope we are in that 25% group! Maybe it will give us a little longer with our bladders. I will keep you posted. Good luck with yours next week. I am only able to get on these boards with the help of my son because I am not all that computer savy! He will be in Dublin, Ireland next week, so it may be two weeks before I can check back on here. If you get to the bladder removal stage, do you know yet which type of urinary diversion you will opt for??
Good luck and will talk soon!

Jean

glassman44
Posts: 11
Joined: Jan 2010

Hello Jean:
I hope your first infusion went well. Warren had is first on 3/09/10 and will continue until 4/13, for 6 weeks. June 7th he will have another biopsy, and then we will know if these treatments took. (There was a problem getting the drug on 3/02, so we rescheduled.) We are going to the Moffitt Center in Tampa, and this facility is awesome!! They gave him a room, hospital bed w/bathroom, and he was cathed and they started the drip (it looked like red punch)...We arived for a 10:00 am visit, and did not leave until 11:45am. It took about 10 minutes to empty and they flushed it with a saline soulution. There was no reaction, except the discomfort of the cathe tube to inject the fluid. He kept the valrubicin in his bladder for about 40 minutes. The nurse sugessted that we stay to see how the drug reacted, so he could urinate it out at the facility. (We live about 30/40 minutes away from the hospital, so we stayed.) Warren had a problem with being cathed, (too much scar tissue), and he was so nervious, but all in all, it went well. He had hoped to keep the valrubicin inside the bladder longer, but that is one of the side effects of the cancer, he cannot hold urine, and pees frequently. Now that he knows what to expect, he is looking forward to next week.
I will keep you in our prayers, that all is well with you. We are in this fight together!!
Keep the faith!! Mary & Warren

indyjam
Posts: 8
Joined: Feb 2010

Hello May and Warren

I'm so glad to hear that all went well and without major effects. Did Warren experience any discomfort with the medication in his bladder (burning / cramping) or afterwards??
Its funny to hear that you had to reschedule your first appt - my clinic (Indiana University Medical Center) had a problem getting the med also, so I have not had my first tx yet, it is now scheduled for Wed March 17th - Happy Saint Patrick's Day!! Maybe they can dye it green - well on second thaught, no they better not. I was reading that bladder cancer was found to be common in women who dye there hair, especially brown?!?! I do dye my hair brown, so I wonder if thats where it came from? Anyway, keep me posted, keep strong, and keep faith!!

Jean

glassman44
Posts: 11
Joined: Jan 2010

Jean:
What a way to celebrate St. Paddy's day....Wait till you see the bright red color!
Warren had his second treatment this week and had more difficulty keeping the solution in his bladder...they want it to stay at least 2 hours, but he only could hold it for 40 minutes. He developed the same symptoms as the last treatment. He seems to get gas for no reason at all. The nurse, was the same one as last time, and said she could not believe it, either. The catheter must stimulate his colon, to cause the gas. (He was so embarrassed) And when he bares down to pass it, of course he loses some of the valrubicin. We will continue to take treatment, however, they did make a Doctors call to find out why it is reacting that way. He goes again on the 23rd. As far as side effects, he did have little burning, but that passed, and had some pain in his penis, but that is part of the cancer. There have not been any uncomfortable side effects as of yet. This time, he did keep more of the valrubicin, and was still ellimnating it from him after we came home...(we are 30 minutes from the Hospital, and were there for 2 hours. I must say, they are really a bunch of great people at the Moffitt Cancer Center....they are concerned and understand what we are going through.
Let me know how your treatment went. Keep in touch and keep the faith!!! We are in this together!!!

indyjam
Posts: 8
Joined: Feb 2010

Mary and Warren:

Well, my second treatment went OK , but this time when they instilled the medication - some of it squirt back out and actually burned my skin just a little bit! Then nurse said that my bladder acted like it was "rejecting" the medication. However, we did manage to get the rest in and the held it in with a clamped catheter for 2 hours. Other than that all went well, and no side effects after the treatment. Now, my big concern is reimbursement!!! I got the statement from the urology clinic for the actual medication and it stated a cost of $29,000!!!!!! Can you beleive it!?!?! I have medicare and have spoken with them several times and they said it would be covered, and boy I hope they mean it!! So far they have covered the first one - all but about 1000$. Hope you don't have these concerns too!! And I hope all else is going well!! Keep in touch!!

Jean

glassman44
Posts: 11
Joined: Jan 2010

Jean:
We were glad to hear from you. Sorry the bills are getting you down, that is part of our recovery....getting over the cancer 1st then dealing with the costs 2nd. We have not heard the final bill, but will handle that when it comes. Our insurance should cover most of it...I hope there is not too much out of pocket for us to pay. Warren's last treatment is April 13th, and so far all is well. At the last treatment, he did elliminate a lot of tissue and clotting after it. (Good sign- it is eating the cancer). That is powerful stuff!!
Don't let the bills get you down, after all we can't take it with us...and if we don't have it, they don't get it. We have scheduled June 7th for another biopsy to see how the treatments have worked. I will keep checking in from time to time to see how you are doing.
Keep the faith; we are in this together. Mary & Warren

indyjam
Posts: 8
Joined: Feb 2010

Well, we got good news about the bill!!! After some investigation we found, and they admitted, to an almost $15,000 error on EACH dose!
So far so good, although I did have one episode of about 48 hours of minor bleeding after the treatment with moderate discomfort too. But other than that - no problems so far. Hope we all continue to have NO PROBLEMS!!! My last dose in next week - already!!

Jean

glassman44
Posts: 11
Joined: Jan 2010

Jean:
I know you are glad the treatments are over. Warren will not know how it worked, until he goes in for another biopsy June 7th...we plan to get alot done up to that point. We are painting the house and getting things ready for the summer. I still work, so I will go on vacation the week of his surgery to help him out. Let us know how your treatments went. Keep in touch...I will still check the boards from time to time. Mary & Warren

indyjam
Posts: 8
Joined: Feb 2010

Mary & Warren

My next cystoscopy and possible biospy is June 8th. Will be thinking about you guys that week too. Hope everything is CLEAR AND NEGATIVE for both of us. Will keep in touch.

Jean

indyjam
Posts: 8
Joined: Feb 2010

Hello

My cystoscopy and biopsy's after valrubicin treatment are ALL CLEAR so far! Thank God! and the Doctors and Nurses! I truly hope your results were as good as mine!

I will be checked again October 1st.

Look forward to hearing from you soon..

Jean

glassman44
Posts: 11
Joined: Jan 2010

Jean:
We are so happy to hear a clean report!! Thank God!! Warren, however was not so lucky, he will have to undergo the bladder removal. He could not keep the valrubicin in his bladder long enough for it to work. But, at least he tried it and we are on to the next step.
July 2, we go for a pre-op appointment and we will know more about when the surgery will take place. He had a problem after the biopsy, and had to be cathed for about 5 days, he could not pee from the swelling of the biopsy. (It is not a new thing, he usually has this problem after a cysto.) We are opting for the second week of August, as I am on vacation and can be by his side without missing work. Keep the faith- good to hear all is well. I will keep you posted. Thank you, Mary & Warren

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network