More Decisions

Mother's Day Flowers!

Quick Update:

Okay, so it has been awhile since I posted!  The good news is that all is going well.  I had the drain taken out last Friday (hallelujah!) and the bandages taken off yesterday.  Dr. Kong seemed very happy with how things were healing and said something about how quickly my skin had healed despite the fact that she had removed some of it.  So, yay(!) on that front and yay(!) for having much of my arm movement back.  I will go in on Thursday to begin Physical Therapy (PT) to help regain the rest of the movement.  My only concern right now is some random nerve pain I am getting when I move in a certain way.  They said this could last for a year...hoping/praying that PT can help with it.  It is not that bad, but when I accidentally move it in that direction, I do scream because it shocks me so much when it happens.  Thank goodness, it is not happening very often.

Decisions:

I have the opportunity to attempt to qualify for two different trials.  I can only enter one trial should I qualify, however, and so I have to make a decision as to what I want to do - and I can do neither if I'd like as well.  I would love opinions on this, so please feel free to comment on this blog or e-mail me directly if you have thoughts.  Here are my opportunities:

B-51
In this trial I would be randomized into either a group that receives radiation on both the breast AND the lymph nodes or just the breast.  They are trying to determine if they are over-treating women who had positive lymph nodes but then received chemo and came back with negative lymph nodes. Currently, the standard of treatment is to radiate both the breast and the lymph nodes.  If I don't do this trial, I will receive both breast and lymph node radiation.

The reason they think they may be over-treating women who fall into this group is because radiation to the lymph node area, after they have been removed can cause lymph-edema (swelling) in the arm that can be permanent.  They would like to determine if not radiating the lymph node area makes any difference on recurrence and therefore maybe should not be done so as to reduce this risk of lymh-edema.

NeuVax
In this trial I would be randomized into either a control group that receives a placebo or a vaccination group that receives the NeuVax vaccination. Either way, I would be required to go once a month for an intravenous injection in the thigh followed by monitoring or one to four hours.  This would happen every month for six months and then every three months for 2-1/2 years(!).  I would also receive a plethora of tests including either an MRI or a CT every three months for three years as well as an ECHO every three months for three years, in addition to the regular mammogram I will already receive every six months. Oh!  And, I am unclear on what this is, but a skin hypersensitivity test twice in those three years as well as some number of bones scans and chest x-rays(?!).  AND...blood draws every three months as well.  Sheesh!!!!

Needless to say, this study is a pretty big commitment.  On the other hand, knowing that I would be followed so closely for three years could set my mind at ease.  It could also be hugely annoying.  It may also reduce my risk of a recurrence if I receive the vaccination, which has been shown to be promising in the previous phases of its trials.  Then again, I would have to order my life around these appts. - babysitters, vacations, etc.  All of the appointments have to be within a set date and time in order to keep everything controlled.  And, CT scans and x-rays - that is a lot of x-ray exposure.  Is it worth the risk of all of that exposure?!  Then again, again, Triple Negative breast cancer has a higher recurrence rate than other types of breast cancers and they say that those first three years are the critical ones.  Being monitored so closely could catch something earlier than just mammograms and appointments every six months.  But, maybe a mammogram every six months is enough.  I mean, there is a limit to the ability of any of these machines and they just simply cannot catch something until it is big enough to catch - no matter how often you scan.  But, I have heard stories of people who go in for their checkup and nothing shows up only for them to find a HUGE tumor at their next six month visit.  Finally, another point I feel I should make is that participating in any research, no matter what the results, benefits, or risks to me, help future patients.

So yeah, a ridiculous decision, yet again.  Thoughts? Concerns?  Points I haven't thought of?  Please post in the comments or e-mail me.

This is time sensitive - I may have to make the decision of which one to attempt to qualify for by as early as tomorrow morning.  If I find out I qualify for the one I chose (in like a week), I can then decide if I actually want to participate.  Ugh!

Thank you!