i want to fight a good fight; i am afraid; i feel alone; i have faith

Reply, with appreciation, to momof4 -- Oh, yes, we remember the date of diagnosis. Mine is February 23, 2007. As I think I mentioned somewhere in my postings, I am college teacher and as of January 2007, I had missed a total of seven (7) days of work due to illness and family emergencies since 1976. Then, in January the bleeding started, continued and worstened. I missed two days visiting my primary doctor and then several more while in two hospitals. After the diagnosis, it took
a month to get me in to see a doctor at the major center to which I was referred in Boston. I taught that month, then I went to Boston (I have a son in Boston and a sister in New England), found a place to live within walking distance of the cancer center and was there from March 23- July 29. I was devastated when the MVAC didn't work and all I lost was my hair. I was elated that the radiation shrank my tumor.
I returned home hopeful. In an August followup mri, the bladder tumor had shruck even more and a surgeon and I scheduled surgery. But a new liver lesion appeared. They said "too small to biopsy" and checking on it again before surgery seemed like what they wanted to do...I went home and finished the semester -- then I got the
pre-OP mri and news of multiple mets in multiple locations. (No treatment in the interim since finding the first liver lesion haunts me now.)

Here's the thing, though, Mom0f4: My days are relatively free from pain. I'm having struggles with blood count and feel really washed out at times, but I am preparing for the holidays (mailed family recipe cookies yesterday), doing a research project, participating in a poetry reading tomorrow and looking forward to my older son's wedding in January.

I just need to know that we are "doing all we can." I guess that is the part where a second opinion might come in. Here's my conflict. I have heard that if a doctor gives a second opinion he or she is then not allowed to treat the patient. Or does that extend to the entire facility -- or is it just plain wrong? So, I have picked out two Southern cancer centers at which there seem to be suitable clinical trials
should I want to see if I qualify in the future. I'm worried that getting a second opinion from those facilities would exclude me from potential treatment/clinical trial participation there. Does anyone know if I have my facts straight and legitimate worries here?

I do wonder if there are roles for radiation and or surgery in dealing with my mets.
I had that question written down for my last appointment, but left the office without asking it. (I have a real problem with that and need to overcome it while there's still life-and-hope.) Even when I have the questions typed up and two copies
with me, I omit one or more questions when I actually see the doctor. I am thinking of starting this Thursday's meeting with the doctor by blurting out right away.
"I almost always leave doctor's appointments with unasked and unanswered questions, even when I have two copies of the typed questions here with me."

When I said I'd write more this morning, I didn't know it would be a deluge of words.

Thank you for helping me -- MSSMR

Hi Ms.

There's loads of info about Gemzar and Cisplatin being the 'new standard' or on its way to being, but you've already had cisplatin with MVAC, the 4 drug combo. So they're trying two different drugs, that makes sense. In some ways Taxol and Gemzar together is a clinical trial. It's experimental and cutting edge.

If you are wondering why you aren't getting offered targeted therapies that are approved for kidney or other cancers...such as Sutent, Avastin, Herceptin and so on- there are many out there right now and many are in trials for bladder cancer- you should ask if that's an option and will it be helpful. Sometimes the targeted therapies are given along with chemo. There is little or no evidence of them actually increasing survival, or so I understand. Also they can add to side effects. So, yes, be aware of what you're getting into.

There are not a lot of stats about new drugs, even old treatments (MVAC) have relatively little evidence due to blc's notorious lack of level three clinical trial results. I think that means 'blinded'. Have you looked over webcafe's page on the subject?

Best wishes,
Wendy

Dear MSSMR,

I waited a few days to respond to your post...it is easier sometimes to respond to concerns that don't hit so close to home....

My husband was diagnosed with Bladder Cancer in June (the 21st you never forget those dates do you?)anyway, we then found out in Aug. that it had spread to a lymph node, and the bones...very shocking as you well know...we were worried about the bladder removal surgery...and then the surgery wasn't even an option. He started receiving Gemzar/Cisplatin...but there was little change...he was doing well, is 47 yrs. old, and the Dr. decided he could be more aggressive and started the CMV Chemo (MVAC with out the "A"...He will have a CT Scan today...a Bone Scan Wed. and the results/Dr. consult Thurs. We hope to see a change, but realistically this is such a gamble...regardless we have decided too start/finish the radiation before Christmas, and if more Chemo is going to help, then we will start up again in Jan. we want the best Holiday ever and Chemo is not going to be part of it...(the lasting effect will be but not the actual treatment) The radiation we are told will help the pain he is experiencing, and that is huge. I know it seems like the medical community has limited resources for this stage of cancer but the reality is that they really do have limited resources...everything is "lets try this", until there is ultimately nothing left to try...I has to be frustrating for the medical personnel too. They want to cure you almost as much as you want to be cured (this has been our experience anyway). Not every Dr. has the best bedside manner, that makes it even worse...Have you gotten a second opinion yet? Sometimes "Changing Dr's." especially when the disease has progressed this far is a good option...someone with a fresh set of eyes, a major Comprehensive Cancer Center, or just a support group...someone who will be there for you for as long as you want to fight this disease. The fight you have is good...it is important to have a positive attitude, and whatever you decide on how to proceed with treatment know that you are so strong, I have never been more amazed at my husband strength (and he was a strong guy prior to this cancer) than watching him fight this disease, fight the symptoms, side effects, and the "system" that says a cure isn't possible...If anyone can do this he can...and if you have the fight in you so can you. Fight for every good minute you can get..Don't settle for less than the best of everything including your treatment...demand it...Remember that this disease at this stage gives you the freedom to say whatever you need to (within reason, and you must spare feelings in some cases) but don't be afraid to say what is on your mind, what you need, and what you want...I cannot guarantee that you will get it every time LOL, but you need to feel free to ask... Please keep me posted on how you are doing, and what you have decided to do...If you find or hear of any new trials be sure to give us the heads up too.

My husband wanted to add the following:

Something that I have found helps free up your mind in this fight, is to settle old issues with family, friends, and spouses..it helps you keep your mind clear for the issues at hand...take the time to make that phone call, have that talk etc...you feel a weight off your shoulders, and it helps you concentrate on what is ahead...If you are religious then you will also see that God understands that you want to fight for the life he gave you and for those around you...put it in his hands, and fight your fight...he will let you know when to stop fighting, or when to keep going...have faith, t will help you in so many ways that you don't even realize until you let it go, and know that he will take care of you...

In Our Thoughts,
K & A

MSSMR,

Your story is like many others we have heard here on the forum. Its so important for ones who pass blood to know they must be checked for cancer. One of our members, in your metastised section had a situation similar, she is mom of 4, Karen..
Her husband saw blood in April or May, and was diagnosed in July or August, he had been to the er with blood and they gave him an antibiotic. Then like you he started passing lots of blood,, now he is undergoing all the chemo's he can to survive this disease. You may want to read some of her posts about chemo and med's he is on..Are you in the Boston area now or back in St.Louis.??? Some more knowledgeable on the forum have info on what facilities are better than others for treatment, if we know where your living we can help direct you,, it could help!!! I wish you would consider putting your pm to me on this thread, it is so informative and it tells your experience which is what this forum is about...Ginger

I wondered if you could share where you are located and what facility you are being treated at. Cynthia may have some info for you on the chemo types and where you can read about the ones you are asking about.. What was your first sign of your cancer?
How long before you saw someone? Its helpful to some on the forum to know these things as we all had different experiences. I find it hard to believe that the patient has to try to come up with his own formula rather than being directed by the ones we put our trust in. But we are our own best friend. Keep up on your post here others will help you out as well. Ginger Beane

Thank you for your encouragement, Ginger. I do have an appointment with my oncologist today and have questions ready.

Also, I noticed a helpful detail in a recent post from Wendy to Leigh."The combination of gemcitabine and taxol has been shown to be highly effective in patients who have failed prior MVAC (18)." I wonder where I can read more about that. I am current receiving gemcitabine and taxol and did previously "fail"
mvac (or mvac failed me).

I am glad I signed up. I feel less isolated already. mssmr