February 2014 Starting Chemo Club

3doglady...yay for last treatment!  I had my last treatment June 2....I also keep track of my side effects and just told my husband how funny it is that you can predict what will happen and when...usually for me anyway...except the sheer exhaustion!  One day I am good so I do stuff and the next day I crash!!!

I was sitting at the dinner table....had a good day and even went in the pool....I started zoning out during dinner and staring...my husband stared at me for a minute and said,"Are you dreaming about your bed?"....I cracked up and said YES! how did you know???...so many times, he knows the upcoming SEs before I do!!  We will be married 30 years at end of month so I guess that's part of it!

As for numbness...yours sounds like mine..balls of feet especially...my doc lowered taxotere so I was only at 40% dose on my last treatment ...hoping it won't get worse...I feel it more in my fingers when I try to play guitar...but mostly it's the upper arm numbness from ALND I think that is bothersome when I play...going to PT next week for that before I start rads on June 23...so much juggling with dr. Appointments!  Good luck with SEs! Rosie

Yay 3dog and Rosie! You are finished! Woohooo!

My numbness that I experienced after week 6 of Taxol is getting better (I think) it seems to be confined to the very tips of my fingers. I hope it goes away!  I need my fine motor skills for texting and typing!

Anyone ever hear of dandelion tea to reduce fluid retention?

hey...I know a lot of us are just finishing chemo..woopwoop!  I scheduled port removal for June 17...now I am nervous!! It was not horrible getting it in...is it easier getting it out?  I am just squeamish about it...only positive experiences please!! Lol...should I ask for anti anxiety drug?

gator girl.... Yes dandelion tea for fluid reduction. 

My port removal is scheduled for the 16th.  to be done in his office.  I will get a local anesthetic and it will be pulled!   I watched a few Youtube videos on it and I am fine with it.  Being admitted for OP and a mild twilight sedation is way more daunting to me.   It should be out in 10 minutes!  I will give a full report on this board afterwards.

I just found out I need to fly to Denver for a job interview on Wednesday next week too.  Doc said NO PROBLEM!

H0pe, I am using Nexim (?) scalp treatment that I got a  ULTA.  My hair is growing nicely (although somewhat unevenly)...can't swear if its the product or not.  It doesn't make your hair grow, but it creates the best conditions to allow it to grow.

jbokland.  I can't wait to hear how the 10 minute port removal goes, as that's what my BS does. But she had to insert it in the hospital with twilight sleep.  Will a BS or an IR do it?

largo.  A New Englandet!!! That explains so much!!! Lol 

So, I had my last chemo yesterday whoo-hoo!!!

I have a question for ya'll I had asked a couple of appts ago with MO about scans after tx to see if it worked. She said that she didn't really do scans and her thought was the scans only gave peace of mind for a short time. My husband and I didn't push at that point, but I've become increasingly more bothered by that mentality.

My question is, what is the norm in these situations? I mean how do we know that all this chemo and radiation has done any good?? She stated that unless I presented with other symptoms she didn't think scans were needed. I told dh that I was going to insist on something being scanned, but am I barking up the wrong tree on this?

What has your experience been in this regard?

tangandchris...so happy you finally finished!! I also asked my oncologist and he said no scans...now right before chemo and after my lumpectomy I did get a PET scan as my liver function numbers were high and he wanted a scan...but now that chemo is done scans are not in the immediate plan...I just saw my surgeon today and my plan is to see her every 3 months for a breast exam and she wants a baseline mammogram after radiation...I have LCIS ILC and we know it's hard to see so it's different than DCIS or IDC I think...your question is a good one...if I start worrying about stuff in the future I think I would ask for a screening for peace of mind...I actually was going to get an MRI before rads but then decided against it as their are false positives and I just wasn't ready to deal with all that.  

Tangandchris I think my onc scanned me because I was HER2+ with a large tumor. HER2+ likes to go to the liver. Yes they call us NED (no evidence of disease). They don't consider cured till 25-30 have passed or you die of something else. Yeah I know, you kinda find that out after chemo is done. Seems like a rip-off but like they say no "known" cure. We might be cured, many of us early stage are but they just won't say for sure because they don't know. 

remission indicates an active cancer that has "stopped".  In my case, as many of us my cancer was removed with my BMX, with no other cancer, I am considered cancer-free. 

The MO will keep an eye out with blood test to watch liver enzymes and tumor marker levels.  If you have a pain that last longer than two weeks or other unexplained issues that raises a concern , they may scan again.  Otherwise additional PET cans are not indicated. 

Hope that helps!

Tangandchris-Congrats on finishing chemo and yes celebrate that for as long as you can!!!!! Every case is different. For me I had chemo first because my tumor grows in sheets and not lumps so the margins of my tumor could never really be seen in scans, it actually wasn't seen at all on my mammo. I had a breast MRI and a full PET before chemo and will get a breast MRI prior to my surgery to see the difference and get an idea of how the tumor responded. After my surgery and rads I will not be scanned again unless something happens. One of the main goals for anyone is clean margins from surgery. 

But like you said they don't really know who will get cancer again just like they don't know (for the most part) who will get it to begin with. They use statistics and data to come up with % chance. Living in ignorant bliss is not an option for us. A plus for me is I've become more aware of my body and symptoms than ever before. So if something does happen again I will be on top of it. Hopefully I won't lose that.

Tangandchris don't let this asshole MO get you to quit. Find a new one. Remember that although there are no guarantee this will work the odds are in your favor it will. Stopping will put the odds in favor of recurrence. It's only a few months of hell to reduce your chances of many many months of hell. 

I know a gal who had her TE's for 10 years before she finally did recon. Given that you are doing rads the longer you wait the better the results will be anyway. Granted 10 years is a bit much! 

3doglady remember the chemo cycle. You have to get through that before it gets better. I was doing chemo every 3 weeks. It wasn't till week PFC I really started to notice the stiffness going away. But it will take some time. I eventually had to go on a diuretic for water retention but it's still very early for you. You will get there.