Losing control of lives

Hi Deb,

I'm, so sorry to hear about all the complications that have been going on since your husband got diagnosed. The stress must be killing you.

I wondered where you are located. It may seem a bit late in the game to start over again with new doctors, but a good second opinion might be helpful even to the doctors involved right now. They sound like they could use some advice. I'm sure they did not expect these things to happen and it sounds like your husband is unlucky, having stones, getting infections. Hospitals themselves can be the source of infections.

It's also unfortunate that they chose Taxol first and that your husband was allergic to it. It's got a lot less data behind it than MVAC or Gemzar and Cisplatin, or even Gemzar and Carboplatin, two other combinations aside from MVAC that are most commonly used these days, so the choice of drugs seems a little bit arbitrary.

Also, Carboplatin is often used when people aren't strong enough for Cisplatin (which is one of the most toxic chemos)...I wonder why they decided Cisplatin was the better drug for your husband. It sounds as if he needs time to recover before another onslaught of chemo and that could be why they are taking their time.

I find it heartbreaking to read that the doctors run away, leaving you feel like you are bothering them, after all it is they that are supposed to be there for you! Your husband has put his life in their hands. If you are not getting the attention that's needed maybe you could try arranging a talk with the head of oncology, or the doctor in charge, one who is NOT on vacation during this time.

I wish you strength in the coming time. I hope things start becoming easier very soon.

Wendy

Deb,

Everything you've written is pretty scary, and what I'm wondering first off is where your husband is receiving his treatments/medical care?  Because if you're somewhere other than a major medical center / university based hospital associated with a school of medicine, I would get him to one in one of the major cities in TN such as Memphis or Nashville.  I'm specifically thinking of Vanderbilt University Hospital, as I know it's part of the National Comprehensive Cancer Network which I think is a very good thing.
Let me tell you that I also had enlarged lymph nodes (don't remember exact size but was close to 2 cms) on my ct scan and deep muscle invasive cancer, the oncologist was sure the nodes were involved with my cancer and wanted to start me on chemo (I don't remember the names of the drugs he wanted to use).  I ended up deciding not to have chemo, instead to do a laproscopic lymph node biopsy and if they were negative (which they were) to go on and do the RC and ileal orthotopic neobladder.  I didn't have any chemo after surgery either and I'm 2 3/4 yrs post op with no recurrence.
I think it would probably be a good idea to get another opinion from another institution not related to the facility he's getting his treatment from currently.  That may not be something you're comfortable with but I think it's probably the right thing to do, unless things turn around drastically for your husband in the nest day or two.
I may be jumping the gun telling you to do this but it's up to the two of you to make the decision, I only make the suggestion.  If nothing else it may confirm that you're already doing the right thing and that would make you feel more comfortable as well.

Good Luck and keep us posted as to what's happening.

Lou Graham

Hello all !! I have been reading this site and the forums for about 6 weeks. That is when my husband was diagnosed with invasive bladder cancer. Went in for a kidney stone found tumor and a week later went in for resection and found out it was into the wall. Pathology was 3/3 on the bladder and prostate. Over the next week and half he had bone , brain scans, MRI, 3 CTs , 2 xrays and it showed 2 lymph nodes enlarged the largest being 2.2cm . Well the end of that week he had an e-coli infection in the kidney so the urologist removed the stone (nephrostomy)placed a stent from kidney to bladder ( antibiotics)and that was 4 days in hospital. Had port placed too. Neoadjuvant chem was to start in one week. MVAC was out because of kidney function being low so we went with Taxol/ Carboplatin. Well went in Sept. 5 for first treatment and within 4 minutes of the taxol he was in amaphylasic shock thank God the ER was 60 feet away. We stayed in ICU for another day. Needless to say he feel terrible after this. Well we meet with the Oncologist and my husband agreed to try again but this time Gemzar/cisplatin. The next try was scheduled for the 2nd on the first he had temp of 102 and his testicles swelled softball size. Saw Urologist ( not regular one he on vacation till next Mon.) This Doc looked said hey infection we'll do a scrotum ultrasound in a week and this could last for 2 or 3 weeks. Well this just about drove me to insanity. I ask him if he understood about the cancer and he noted that we could discuss options next week. Didn't even stop and look back. I spoke to Oncologist this evening and she suggest going to ER for better responce and to what caused this and if we're using right antibiotics. My husband says he'll think about it tonight. He's at a 10 on fatique lost 50 pounds in 3 months and taking lots of pain medications. This site has been very helpful and I'm sorry for the long first post but we're losing control of our lives. I can do this I just need definitive answers, agressive therapy and a little more patience with other physicians.