Why bother with the last round?

bubbadog

A bit of background before I start whining... I am 47 with a stage 2 ILC. My mom died of a very aggressive b/c (not sure what type) From the time she found the lump to the time she was dead was 16 months. She did have positive nodes at the time of the initial surgery; I did not. However, I have always believed that having the lumpectomy versus mastectomy was one of there big errors made with my mom. Therefore, I chose to have the mastectomy. My lymph nodes were clear and the margins really good at the time of surgery. I am enrolled in the NSABP B-49 study, randomized to no adriamycin ;therefore I get cyclophosphamide and taxotere every 3 weeks for a total of 6 cycles, then 5 years of either tamoxifen or Arimedex. I just completed cycle # 5 of 6 of TC. The side effects are horrific. I have gained 20 lbs over the last 13 weeks, even with trying to watch what I eat Exercise is not really possible right now: I need to lie down to rest after climbing up one flight of stairs. My pulse rate now averages about 140 beats per minute or so. I am heat intolerant and I cry at the drop of a hat. I am completely fluid overloaded. Even with Lasix, I am still "sloshy". Due to the weight gain, I own exactly 1 pair of sweatpants I can get into right now. My dr's responce to all of this was "You're on chemo. Here's some Ativan" I am really tempted to just say to hell with it, pull out of the study and try to become some semblence of me again. According to the stats my dr showed me initially, doing nothing after surgery left me with a 46% probability of relapse, whereas doing everything they want me to do will leave me looking like Jabba the Hut and still have a 23% chance of relapse. I just don't know that continuing treatment is worth it to me at this point. I can't continue to live this way and no one will listen to me!

crabbiepattie

Whine all you need, bubbadog!  I had 6 rounds of TC and the last 2 were rough - I really don't think I could have survived another round.  Considering your family history, you're trying to throw everything at this but there are limits.  It might be worth asking your doctor what the estimated relapse rate would be with 5 rounds of TC.  That would be useful information and might get some attention.  Sending good and healing thoughts your way.

artpetals

Everyone is different; my oncologist told me initially that the research for my kind of cancer shows that six rounds of what I took did not improve survival and that four did just as well with fewer side effects. I don't think I could have made it through six rounds, I could barely walk after round four from hand foot syndrome and still have residual pain nine weeks later. I got a UTI from the Lasix and had to take seven days of anti fungal IVs for thrush. I got sub clinical lymphadema during chemo, and yes, my girlfriend bought me a pair of larger sweats that I wore almost daily for over a month along with a pair of house slippers I had to purchase because my feet were too puffy to fit into any of my shoes. I had to blow my nose a lot, and it was bloody for a few weeks. My blood pressure went up. I was miserable. Three weeks after my last chemo, I was still miserable and I cried a lot.



The good news is that I have lost the ten or fifteen pounds of bloat that I gained, I can lift my legs to get dressed in the morning, I am not tearing up anymore, and the horrible peeling skin on my feet is gone. I am strong enough to take out my trash and check my mail every day, and I am hopeful of being able to backpack 50 miles in Yosemite again like I did last summer!



Don't feel bad for whining....you have been through a very rough experience and you are trying to make a good decision when you are physically quite low. Perhaps a consult with another highly recommended oncologist out of your immediate area might be helpful.



I wish I could give you a big hug!

hightide1

If you are in a trial and continue, does this mean they will pay for drugs, scans and followup visits?

This would be significant if you can tolerate the last rounds.

You won't be living permanently with the treatment SEs. They will start to clear after your last infusion. It takes awhile.

The difference between 46% and 23% chance of relapse is significant!

You are taking some tough drugs but you have an end date.

It is your decision and a tough one but I would recommend looking at long term benefits over short term hell.

Having said that, SOB, weight gain and rapid heart rate would have me asking for a cardiac evaluation. Will they provide that?

Your doctor sounds like an ass. Has he listened to your lungs? Are you coughing, do you sound 'wet'?

Fluid overload isn't benign- never mind the emotional toll.

I agree with crabbiepattie. It sounds like time for an indepth discussion. Giving you ativan seems like pharma duct taping your mouth and brain. Ativan has its place but that would be after exams performed and questions answered. Will the trial allow for your dose to be reduced?

Crying and whining are OK. So are sweatpants. Go get a pair in a kick-ass color in those new fibers that are silky and absorb sweat.

I am rambling but you have a very real issue that needs some medical attention.

Keep us posted. Big hugs.