1st week of chemo

Hi all,

I been trying to understand what is going on with my body, but some of it is just not making sense. I apologize if I am asking insane questions or distress anybody.

I know that after the RC/neobladder and 25 lymph nodes removed that I was P3aN0M0. 6 weeks after the RC I started cisplatin and gemzar and have completed 3 months. Chemo was decided on to treat any micromets that were not detectable but likely with the dx being micropapillary TCC and urachal cancer. So here is where I am confounded.....After surgery I was cancer free, right? So does that mean this is a reoccurance? If 3 months cisplatin and gemzar have not eliminated the TCC micromets, why should we do another month of the same? This enlarged lymph node by my aorta is the closest to my bladder since the node removal at RC and that it is now the 1st node for bladder draining...so if I have no infection - what else could be wrong with the node?
I am not ok with continuing a chemo that is not effective, nor am I ok with waiting and watching a few months...seems to me that would be beyond fool hardy with all that has happened thus far.
My greatest concern is that the node is enlarged from urachal cancer. My understanding is that there is not a standard of chemo or otherwise to treat it. So what can be done?
Please don't think I have lost my spirit here...I have not. Nor have I lost my spunk or fight. It is Hoyle that has messed up...lol nothing is going according to Hoyle The plan of treatment has not proven effective and a new plan has not been set yet. Any input is so appreciated....God Bless all 948 of us , Holly

Holly,

Goodness!!!! So good to here from you but was hoping for some better news. I'm with you on your concerns....and understand your frustration.....yes, where is someone one like Dr. Phil on the medical side who says, "Hey, how's it workin' for you?" I hope someone jumps in here and can make some sense of what they are doing with you. I have my last chemo on Monday and then surgery on the 25th.....but will be praying for you daily, as I have....and will continue to do until of course when they put me on all those drugs at the hospital. Take care, Melodie

Hello Holly,

Seems to never end, huh? Sure wish I could help answer your guestions to ease your mind and make things easier for you, but I just don't have the answers.

I just wanted to let you know that I am thinking of you, have you in my prayers, and hope things will come together for you soon.

Just know my heart is with you and I care.

Alice

Hi Friends,

Went to Mayo's for my 1st 3 month check up...just got back last night and I am as unsorted as are my results.

Urine cytology was good.
Blood looked good. The B12 is low as they expected. I am hoping to supplement or get the nasal spray as I am not interested in a monthly shot in my muscles.
Did a MRI instead of full body CT ( I am IVP dye allergic)...it showed an enlarged lymph node near the aorta. They explained this is where my bladder lymph stuff drains to so there is concern...I have been doing 3 monthes cisplatin?gemzar and they know urachal cancer doesn't respond to chemo.
Did mammogram and ultra sound on my breasts ( I found a freaking lump last week:( So far they think the black fluid draining on the right side is from a cyst in the ducts near the nipple. They are scheduling me to get it straightened out by their breast people in a week or so.
The bone scan showed little change in the left shoulder bone tumor so they called that stable. I have been having alot of bone pain the last 2-3 weeks so they are doing a 2nd review comparing previous bone scan.
And the CT chest has shown the lung nodule to be confirmed as a scar. I have the beginnings of emphasyma and COPD ( I was a 30 smoker so I guess that could have been worse).
The urogram showed I am indeed having some residual urine so self cathing is going to be a must until I can get the neobladder muscles figured out.

I think that is all they did in 2 days.....

The 1st resident who delivered the news didn't see the addendum to the RC pathology so he was unaware of the urachal cancer factor. When he told me I would finish out the 4th round of cisplatin/gemzar then we check it again in October - I freaked a bit. I told him I was under the understanding that chemo doesn't work on urachal cancer...So he pulled up the addendum pathology, excused himself to call pathology, and sent for Dr Blute. They Are now scheduling me for Dr Corghan - chief Oncologist their to make a review of everything asap.

I went there hoping to hear all is going good., and most isI guess. I am just really freaked out that the primary lymph formy bladder is enlarged 1 cm.If 3 months chemo has not kept it from being affected - why would we do 1 more month of the same then sit and wait 2 months before we check it again? Seems to me that we should be considering something that might actually benefit me...any thoughts here?

I should be back at Mayo's in the next week or 2 and meeting with Corghan. I was told this lymph node is operable ( not all of them are if too enlarged/close to the aortic artery. Seems to me that if three months of the current chemo have not stopped it - we should do something before it becomes a stickier problem. I feel like I need Dr Phil to say, " So how's that workin' for ya?"

Anyways, as far as all the continual abdominal pain I have had since the RC...they say it is from the massive adhesions and tears I have from having had numerous large surgeries. The adhesions pull and tear and that causes the pain. So they prescribed pain patches to put on my belly right over the worst of the pain. I can't believe they are serious I need to do that. My lower abdomin is very tender and it is just going to stay that way because of adhesions? Any input?

They also addressed the right leg adenopathy...They told me the femoral nerve is likely a culprit that should slowly recover in time. The physical therapy should help somewhat. But they feel it is more likely a nerve in the lower right side of my abdomin that also affects the right leg. They didn't sound hopeful that it will resolve should it be the problem, but wished me the best in physical therapy again.

I love Mayo's and what they did for me overall....I am glad they took out my T3G3 diseased bladder and gave me a neobladder. But I can't help but feel a bit standed and lost here. Everything inside me says it is a major mistake to not seriously reevalute the chemo in light of the lymph node . It is the same unsettled feeling as when the 1st uro wanted to do BCG, when U of M wanted to do manual neobladder. And I was right. The input from my family here help guide me then, and I am asking you for guidance once again...Love you Holly

I will be thinking of you, Holly. Good luck.

Your bud,
Rosemary

Hi Rosemary and Melodie,

Yes we are leaving here on the morning of the 4th. It is a 5.5 hour drive and I just had chemo yesterday so the time could be longer. Tests start on the 5th at 7am. On Thursday they are doing blood, urine cytology, chest xray , full body ct, bonescan and then some. Friday I meet with Blute and Corgan and learn how to self cath with the stoma nurse. They left some time open incase they need to fit in anything else after that. Needless to say I am a bit nervous.

Next week is my week off of chemo I think I will need it off just to relax a little after this week.

Love you guys, Holly