Urachal Cancer Survivor

It has been 3 years since I posted my first message of being in remission.       I have remained in remission with no reoccurences. My cancer was diagnosed as stage 4. I underwent surgery ,removed half of bladder, colon resection and hysterectomy . I underwent chemo for 6 mon. It was agressive Gemzar and Cistplatin. Except for a back injury and osteoporosis I am doing well. I now Know my surgeons and oncologist are the best around. I thank God for every day. It is still a battle, but worth the fight. Dr. Songbird are you still using this sight?  God bless to all who fight this rare cancer. Never give up.      Linda L.

How WONDERFUL...I haven't written in awhile either (this is Jane's sister Melissa)....she has been battling urachal for what is going on 5 years with re-occurences about every 2 years that they treat surgically or now since she has lymphnode mets, via chemo. In February, the cancer went to her lungs (but has stayed in her pelvic area for 4 1/2 years). She did three regimes of cisplatin, ifosfomide, taxel..it was harsh but by the 2nd treatment, she was symptom free (no oxygen, no cough, could sleep laying down). Four weeks ago, the CAT scan indicated that the chemo was not successful but the Dr. was confused since she looks great feels great and has not one cancer related symptom. He was planning to move her on the Gemzar regime but has decided to hold off doing anything since she looks and feels so good....he thinks something positive is going on but he is not sure what exactly that is.  She has a tremendous amount of faith and alot of folks praying for her (I think that is the "it" she has going for her) but as far as she is concerned, if you don't feel like you have cancer, then you don't.  You are right, never give up, strange and miraculous things can happen, you just may have to go thru some tough times to get there!!!!! I'm writing this for her since she just took her Jeep Wrangler to the beach...life is good!!!!!

Melissa (Jane's sister) 

On 7/6/2007 Linda l wrote:

It has been 3 years since I posted my first message of being in remission.       I have remained in remission with no reoccurences. My cancer was diagnosed as stage 4. I underwent surgery ,removed half of bladder, colon resection and hysterectomy . I underwent chemo for 6 mon. It was agressive Gemzar and Cistplatin. Except for a back injury and osteoporosis I am doing well. I now Know my surgeons and oncologist are the best around. I thank God for every day. It is still a battle, but worth the fight. Dr. Songbird are you still using this sight?  God bless to all who fight this rare cancer. Never give up.      Linda L.

Linda and Janes sister

I first want to thank-you for giving me hope! I come to this message board often to look for some answers to what seemed to be hopeless. I too have urachal cancer and I am on my second chemo drug ,we are praying that this one will work.

I have read all your posts and often wondered how you ,Jane and all other urachal cancer survivors are doing. It would be really nice to hear from dr. song bird and anyone else who has posted a message . It would give us all little hope if we can hear that people can survive this.

Your right never give up !!

Christine

On 7/7/2007 Urachualknower wrote:

How WONDERFUL...I haven't written in awhile either (this is Jane's sister Melissa)....she has been battling urachal for what is going on 5 years with re-occurences about every 2 years that they treat surgically or now since she has lymphnode mets, via chemo. In February, the cancer went to her lungs (but has stayed in her pelvic area for 4 1/2 years). She did three regimes of cisplatin, ifosfomide, taxel..it was harsh but by the 2nd treatment, she was symptom free (no oxygen, no cough, could sleep laying down). Four weeks ago, the CAT scan indicated that the chemo was not successful but the Dr. was confused since she looks great feels great and has not one cancer related symptom. He was planning to move her on the Gemzar regime but has decided to hold off doing anything since she looks and feels so good....he thinks something positive is going on but he is not sure what exactly that is.  She has a tremendous amount of faith and alot of folks praying for her (I think that is the "it" she has going for her) but as far as she is concerned, if you don't feel like you have cancer, then you don't.  You are right, never give up, strange and miraculous things can happen, you just may have to go thru some tough times to get there!!!!! I'm writing this for her since she just took her Jeep Wrangler to the beach...life is good!!!!!

Melissa (Jane's sister) 

 

 

 

Melissa,   It was so inspiring to hear about Jane. She is so lucky to have your great support. My sister is still a life saver and also my youngest son. Prayers have made this a miracle for me, also.                 

            How old is Jane? Iam 57, was 53 when diagnosed. Keep me posted on any new progress.

                  God Bless,   Linda

Daisy Bear,

    Not sure if you remember who I am....when I was 1st dx'd in Jan 07 I found your posts and you helped me get to the bladder cancer web cafe. I have been looking for YOU :)

   I am sorry to hear what all you are going thru. I was dx'd with TCC grade 3 T3a and urachal cancer. Had RC and neobladder. There is life after it - really. Please email back - I think we can help each other with this.

  Take care, Bless you, Holly

On 7/9/2007 Bloomin64 wrote:

Daisy Bear,

    Not sure if you remember who I am....when I was 1st dx'd in Jan 07 I found your posts and you helped me get to the bladder cancer web cafe. I have been looking for YOU :)

   I am sorry to hear what all you are going thru. I was dx'd with TCC grade 3 T3a and urachal cancer. Had RC and neobladder. There is life after it - really. Please email back - I think we can help each other with this.

  Take care, Bless you, Holly

Holly I am so glad I was able to help you in some small way. I think you are amazing to be so positive about what you have been through.

I am still on chemo, but they changed the drug because the ct scan showed the lymph node had grew a little. All the other spots had stayed the same , so it could have been far worse.

I am trying to enjoy the summer with my boys, we just put in a pool and we are loving it!!!

Hope to hear from you soon 

Christine

Hey Christine, just checking in to see how you are doing.  My husband is on his 2nd round of chemo, finishing up tomorrow morning.  He's feeling ok, but has started to lose most of what hair he had left!   They won't do any scans until the middle of September so we won't know if they need to change the chemo or not.

Well I hope all is well and your enjoying your pool!  Email back if you feel up to it!

God bless 

On 8/31/2007 Basketballmom wrote:

Hey Christine, just checking in to see how you are doing.  My husband is on his 2nd round of chemo, finishing up tomorrow morning.  He's feeling ok, but has started to lose most of what hair he had left!   They won't do any scans until the middle of September so we won't know if they need to change the chemo or not.

Well I hope all is well and your enjoying your pool!  Email back if you feel up to it!

God bless 

 

Hello

I was hoping to hear from you!! Did your husband get the porta cath?

What drug is your husband getting? I am getting carboplatin and taxol right now. I just got the ct scan results and they show no new growth since june. they will give me 3 more cycles and do another ct scan to see what effect it is having. I hope  your husbands scans come back with really good news too!!!

dasiy bear

Hi, good to hear from you!  He's on cisplatin for a couple hours in the morning then 5FU for 18 hours.  He finished up his 2nd round this morning so he's off for 2 weeks.  They will scan him on the 13th of September.  I'm not too confident that the chemo worked though, he has 2 tumors on his incision line that don't look any smaller, in fact, one looks bigger.  So not sure what they will do next.  I'm surprised that he doesn't start to feel sick until he's at the end of his chemo cycle.  Is it that way with you too?  He's not feeling good at all today, but the early part of the week, he was feeling ok.  Not great, but nothing like now.  He was almost bald to begin with but has lost almost what hair he had remaining.  I don't know why but I was surprised by that.  I don't know why I didn't think he'd lose his hair!  Silly me!  

 How are you doing?  How's the family holding up?

Talk to you soon! 

On 9/1/2007 Basketballmom wrote:

Hi, good to hear from you!  He's on cisplatin for a couple hours in the morning then 5FU for 18 hours.  He finished up his 2nd round this morning so he's off for 2 weeks.  They will scan him on the 13th of September.  I'm not too confident that the chemo worked though, he has 2 tumors on his incision line that don't look any smaller, in fact, one looks bigger.  So not sure what they will do next.  I'm surprised that he doesn't start to feel sick until he's at the end of his chemo cycle.  Is it that way with you too?  He's not feeling good at all today, but the early part of the week, he was feeling ok.  Not great, but nothing like now.  He was almost bald to begin with but has lost almost what hair he had remaining.  I don't know why but I was surprised by that.  I don't know why I didn't think he'd lose his hair!  Silly me!  

 How are you doing?  How's the family holding up?

Talk to you soon! 

 

I don't remember if you told me your first name or not! so forgive me if I forgot!! Anyways it sounds like your husband is on a very different drug (4fu) which I don't know what that is? But I do know cisplatian can be rough!!! I didn't lose my hair until they changed my drug to what I get know. You said you don't think chemo has worked!! can you see his tumor on the outside of his body??If this one didn't work lets hope the next one will?? Do you know if your husbands cancer was signet ring cell?because that is what my pathology report said mine was. Just makes me think if that determines what chemo they try?

My kids are getting ready to go back to school this week and they are looking forward to it! One year ago this sept. 6 I found out I had cancer and I look back at what I have been through and it sounds like a nightmare come true. But I'm still here and I plan on being here for long time yet!!

I hope the chemo has worked and the scans come back with great news!!

I will be thinking of you on the 13 when I am getting my chemo that day and thinking positive thoughts for you and your husband.Please let me know how you are doing!!!!

christine