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Losing control of lives
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.
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8 Replies
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Hello to all!! Well I’ve been very busy with our business and my husbands appointments and etc. but I finally am taking the time to post our update.
After a week and a second ultrasound the orchitis was improving greatly but the culture showed e-coli again. The urologist said he didn’t think my husband would get rid of the e-coli because of the stent but added that he had improved to the point that he felt IM injections of Rocephen for 10 days would be the best approach. After we left his office we meet with our Oncologist and she immediately said that she felt it was time to begin chem ( second times a charm) First dose is Tuesday using Gemzar/Carboplatin . She feels that a continuing regiment of antibiotic ( Amox/Clav twice day) should be taken during the chemo treatments.He feels so much better this week eating again and feels well enough to get out. Can’t really understand this e-coli infection. Just though everyone was so nice when I first wrote and wanted to keep all up to date. Wish us luck on Tuesday and if anyone as any added advice would be grateful for it. Thanks Debbie -
Debbie,
You sound so much more in control tonight, I could tell from your post of yesterday you were frightened. I interpreted it as being frightened overall, but am so glad to hear of your genuine trust in the doctors you are using and that it was the urologist in the ER that had you both feeling so out of control.
I also have an appreciation for the prayer said by your oncologist when she heard about the reaction and also about the hug she gave him when she came to the ICU. I know they had to be good for you to see and hear about after all that had just happened with your husband.
I look forward to an update after your husbands appointment next week with his urologist, and I know many others on this site will be looking for it as well.
Have a few days of relaxation, you both deserve it.Lou
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Thanks to all for the replies. We went to the ER today and had the ultrasound and the infection is responding to the cipro. This made me feel much better.
I am sorry but I said cisplatin in the first mail and it is carboplatin because of the kidney’s. My mistake in typing and memory.
We meet with the urologist on Tues. our regular one. We have alot of faith in him. He came to East Tn from Texas and at the age of 38 has lots of experience with bladder cancer. We are in Greeneville TN but our doctors and hospital are in Johnson City. This urologist is our second opinion and highly regarded at the hospital. He has given us options but we will discuss the lymph nodes again in more detail.
Our Oncologist is also new to this area from Georgetown University and studies at Stanford. She has a very calming effect and when she came to the ICU after the reaction she hugged my husband and said when they called her she sat down and prayed for him and for guidance in caring for him. She ask about this site and encouraged me in bring in all the info I had questions on.
Maybe in my first post I sounded like we were doughting things that was true but only the stand in Urologist not our regulars. But all advice and experiences are for learning and I apppreciate and will indeed use and review all those given.
Will update as things go along thanks for the prayers and advice all is welcome. Debbie -
Deb,
A second opinion from a urologist is another route you could take, as in my case again the two urologists agreed that taking the lymph nodes laproscopically and doing frozen sections was a good way to go. If they are involved and one wants to do chemo first then you can stop the procedure and do your chemo soon after, because recovery from laproscopic surgery is much easier than an open procedure to remove lymph nodes.
I went with the gut feeling I had concerning the oncologist, and told my urologist I wanted surgery first. He told me that he didn’t necessarily agree with the oncologist and was fine with doing the surgery in this manner (this is something we talked about long before having the pathology report from the TURBT, so he wasn’t just saying this because it was all of a sudden what I wanted to do). As I mentioned in my previous post to you I went with my gut feeling, and also my feeling secure with the urologist who would be doing the procedure. I had FAITH in him, he’s a man of faith (muslum) and believes in prayer. This all came about from some very simple words he had said to me early on in the process of diagnosis and staging, I knew he was the right person for the job!
I wish for you and your husband to find someone you can have that same faith in, as you can also read about others on this site who also have faith in their surgeons or oncologists whichever way they chose to go with treatment. That comes from being a well informed patient or family member of a patient, which then helps you to make the right decision medically as well as having that feeling of faith in your doctors and caregivers.
We’re hoping things will be getting better soon for the two of you, and you’re in our prayers.Lou
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Deb,
I am very sorry to hear about the complications that your husband is going through. I would definitely stress on getting a second opinion , for the diagnosis and especially for the chemo. If the doctors decided to go ahead with Taxol/Carbo combo because of kidney function being low, then I just dont understand how they can go ahead with Gemzar/Cisplatin . Cisplatin is toxic to the kidneys and carboplatin is not. I was switched from Cisplatin to Carboplatin since my kidney function deteriorated after 2 cycles of chemo. Please ask them these questions before proceeding with the chemo and please find another oncologist and take a second opinion.
Good luck.
-Shoba.
S R
Kidney Transplant 1998
Upper Tract TCC, Dec 2004
Native kidney Right Nephroureterctomy Dec 2004
Non invasive bladder cancer,High Grade, Ta,TURB Jan 2012
Native kidney Left Nephroureterectomy Feb 2012
Deb,
I too am sorry to hear about the issues you have had so far. It saddens me when I hear a story where Doctors have caused more stress than the diagnosis. Like Lou, I strongly recommend seeking another opinion from an outside source. I have said it many times… seen the results here and in my family. Having COMPLETE trust in your Doctor makes a huge difference. Based on your story it really does sound like your doctors were thrown a curve ball or two. Like Lou, I think a major med center might have answers your local team may not simply due to experience.
Please do not get me wrong, I am not about to knock the use of a local team vs. a major med center. I chose my local Uro over John Hopkins. I should say that my Uro did complete his fellowship at Mayo so he certainly was qualified but just as important… he made me feel comfortable. He took the time.
I say make some calls and by all means… let us know where you live. I’m sure there will be sugestions on places to look into!
Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06
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
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