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Lymph node biopsies--positive

Jemuna
0 Recommendations

Okay, so now what? I have only posted a couple of times here but do read and gain strength just about every day from all of you on this site. Dennis had bcg, chemo and then r.c. in March with 21 lymph nodes removed(10 of which were positive). All of this in 22 months. The choice is ours: chemo,clinical trial,do nothing. There are no guarantees for the first two options. So far, no one can give us a time frame, percentages...We routinely see 2 oncologists-one locally for my husbands treatments and the other as a consultant at the hospital/cancer center where my husband had surgery which is two hours from home. I would really appreciate some input, info, anything before we see the local guy on Friday. I am numb and my head is swimming and I don't even know what to ask at this point. My hubby is 50, I am 49 and somehow today we must make it through our son's last soccer game as a high school senior. Life stinks today. Thanks all. Jane

Explore topics in this discussion:

Exercise Cancer Taxol Surgery Back pain Rashes Chemotherapy Pain Adriamycin Carboplatin Methotrexate Bladder cancer

33 replies

Karego

If Dennis is recovered now and can begin chemo, then by all means, do it.
Chemo is insurance to add to the surgical intervention you've already done.
Several members are doing this or are about to do chemo post surgery.
Hopefully, you can do the treatments locally. Let us know what you decide.
Karego

nancynursez637

Living with cancer is an active fight. To do nothing is resignation that it wins. While there are no guarantees, being active in the fight is known to provide the best out comes.

A series of books might be helpful. Love Medicine and Miracles was this surgeons first book. One of his premises is difficult patients are more likely to be successful, and reading them or watching Fight for Your Life may give you the motivation you need to kick this fight into high gear.

http://www.berniesiegelmd.com/bernie_siegel.htm

http://www.amazon.com/Bernie-Siegel-Fight-Your-Life/dp/B0001LQL56

NancyN

ljin

On 9-3-09 by husband had 42 lymph nodes removed with his R/C. 2 of the nodes were positive. Our new onocolgist was encouraging because less than 20% were positive. We tried chemo prior to R/C, but my husband could not tolerate it so we stopped after only 2 treatments. Because we didn't finish, the doctor recommended we try again. So last Thursday was the lst treatment .

Linda

sunshine604

Hi -
Because each cancer is different, each person's background, physical condition, health, age, etc is different, statistics for most aspects of bladder cancer are very difficult to give with any degree of accuracy.
What is known is that chemo does help to get rid of the cells left behind by the bladder, but they can't give you a reliable percentage. Of your three choices, chemo is the one most go to. I'm not familiar with any of the clinical trials so can't comment on them.

We have a lot of long-term survivors here and they will chip in with their knowledge and experience. I had the RC a year ago and had chemo after (positive lymph nodes), so time will tell whether the chemo got it all.

You are young and have many years ahead of you, so do what you can to ensure you enjoy it!
Eileen

roadrunner

Your right ,this stinks, hopin an r/c will do the trick and more to come afterward,chemo ?...thats tough,,really tough, I would of course do the chemo,,,
my husband didn't require any chemo after surgery,
we were very fortuneate for sure,,,,I can't imagine how you must feel,,,,,,I suppose as in the beginning we adorn our battle fatigues and keep up the fight,,,
I will be thinking of you,,,and praying the chemo does its job,stay tough,,,,,as a caregiver our job is a big one,and sometimes its very hard to keep going....

Ginger

Jemuna

Thanks everyone. My husband has been a fighter all of his life for what he believes in. I think he feels as if this is a battle he can't win. But you're right Nancy-to do nothing is resignation that it wins. I would like to hear from some of you long term survivors. I realize everyone's fight is different but right now we are not getting much positive info from the docs to fuel the fight.

lsh

I haven't had RC or surgery(just BCG). However I have done a lot of research about this. One of my uros is at MDA. I went to a talk on clinical trials there. They talked about dose dense MVAC, a chemo protocol they recommend. Some of our members have done the dose dense MVAC and some are doing it now. I am sure they will chime in here soon. I for sure do the chemo if it were me.

Lynda

2Sincerely

Jemuna, I am not a long term survivor but plan to be! I had RC in June and my doc removed 66 lymph nodes and all were negative ... great ... but it was still recommended to me that I undergo chemotherapy because the cancer was very aggressive and had gone through the muscle and into the "fatty layer surrounding the bladder. Chemo is not fun but not that bad ... I am still working and have only missed the days that I have the 6 hour treatment ... ond day a month.

Hang in there and keep fighting!

cat22

Hi Jemuna, my husband Ben was diagnosed with Stage IV BC in June of this year. He started chemo in July (Taxol. Gemzar and Carboplatin). The tumor did not grow, but also did not shrink. He cannot have surgery because his tumor is more on the outside of his bladder, and into the pelvic wall. We went to MD Anderson a few weeks ago for a third opinion, and Dr Siefker basically told us if it was her husband, it would be dose dense MVAC. We trusted her judgment, as they see this all the time. Ben started last Monday, and has done very well so far. Worst symptom was being tired for a few days. There are some others that have gone through MVAC, and at least one other (Candon and Ed) going through it right now. I'm sure you'll hear from them. Feel free to ask questions......

Cathy

daveyo

i did the dose dense mvac prior to my rc.....it wasn't so bad, and is in clinical trial...

my oncologist at harvard medical/dana farber swears by it

Jemuna

Have not heard of Carboplatin. What is dose dense MVAC? The docs have suggested MVAC but neither one used the term dose dense. Jane

jj803

Carboplatin is a relative of cisplatin. It has less kidney toxicity, so is used in folks with decreased renal function in place of cisplatin.

JJ

Jemuna

Still don't know what "dose dense" MVAC means. Went to the acs website and there was no info on that term. I know what MVAC is though. We'd like some info on side effects, administration schedule... Are there other chemo "recipes' out there that we should be investigating? I didn't find the acs website very helpful. Feeling a bit desperate as our appt. is tomorrow. Thanks so much. Jane

cat22

Jane,
My understanding of the dose-dense MVAC is that it is stronger, and administered on a different schedule than tradition MVAC. Ben's schedule is every two weeks. Part of the regimen includes a shot of Neulasta 24 hours after chemo infusion is complete. If you do a google search for "dose dense" MVAC, there are several articles you can read about the clinical trials using dose dense MVAC. Hope this helps.

Cathy

Jemuna

Thanks so much. Will check that out now. Jane

Jemuna

Dennis will start chemo tomorrow --Taxol. Once a week for 6 weeks then re-scan. He has been having lower right side back pain for the last two weeks. Don't know what that is all about. He chooses not to try dose dense MVAC at this time. I would still be interested in hearing from those of you who have been through it or are currently going through that treatment. My husbands' concern is that if the side effects of the mvac treatments are such that quality of life is seriously affected in a negative way; and the docs can't give him a good enough survival percentage; he'd rather not go through it. Please feel free to chime in and if this should be in the journal section instead please advise me. Thanks so much to all of you here. Jane

cat22

Jane Ben is 67, and has been through 2 cycles of dose dense. Cycle 3 coming up on Monday. Your husband is much younger and should tolerate well, although everyone is different. The last few couples posting here about dose dense MVAC (Daveyo, ED and Candon, Dave and Stacey) will probably chime in. Ben hardly had any side effects. He's tired about 9 days after for a few days, no nausea, great appetite, a few muscle aches. He has had a little additional neuropathy, but not significant (he already has neuropathy in his right foot).

Cathy

lsh

Hi Jane,

I haven't done the dose dense mvac(still in bcg stages), but most on here who have had it tolerated it VERY well. The docs have a new nausea drug these days that works really well. It is called emend I think. Ask Cathy or Camden---Ben and Ed are using the drug. Good luck to ya'll with the chemo.

Lynda

Crazyhorse2

I started out with Gemzar/Cisplatin and day 15 had an allergic reaction to the Gemzar. Now they switched me to high dose MVAC and what that stands for are the drugs that you get Methotrexate Doxorubicin vinblastine cisplatin and like Cat said after your done your round I was done on Wednesday and came back on Friday to get a shot of Neulasta which keeps the white blood cells up. I was given 3 rounds which was every 2 weeks.
Chemo drugs have to mixed per a persons BMI-Body mass Index for the correct amount to be given.
And the difference with high dose MVAC is for folks that are getting their chemo before their RC another words the neoadjuvant chemo from everything I came up with.
You can't make a chemo drug stronger because they are all poisons to kill off the tumor why I mentioned how they measure it out because I asked.

******Summary: The purpose of this research study is to test the effectiveness of neoadjuvant chemotherapy in combination with pegfilgrastim (Neulasta ) followed by radical surgery in patients with muscle-invasive urothelial carcinoma. CrazYhorse

Crazyhorse2

I forgot here's the link if you care to read it over about high dose MVAC. CrazYhorse

http://www.dana-farber.org/apps/clinical_trials/trial.aspx?341

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