Starting Chemo March 2015

SpecialK

Some docs will fill with drains to apply pressure and reduce drainage, others feel that filling too soon increases irritation and creates more drainage. My docs did not fill with drains, they felt that with a drain exit you already have an infection risk, adding a needle into the fill port provides another infectious avenue. Docs also have arbitrary time limits for having drains in place - some will pull them at a certain point even if your totals still exceed the desired maximum for removal. Much of this comes down to philosophical attitude on the part of the PS but you could always ask what has been your doc's experience in regard to drainage amounts with simultaneous fills.

IndyGal35

He and the BS felt that there is a narrow window after surgery when radiation is still effective, so the PS is trying to expand me to comply with my RO's standard timeline. It's not fun. I wish I could go a little slower, but at least it'll be over faster!

Trvler

So I went to the chair today and the MO was pretty nice. I think she must have found out I have a consult with another MO in her group coming up next week. She didn't even try to lean on me not to do NOLA. I didn't care. I was ready to just not talk about it.

She also said maybe they will take the port out early since we only have 3 more to go. I don't even think they can schedule it that soon anyway. They are large and bureaucratic and no one ever does anything that quickly. So if i had to do 2 or 1 via a vein, I would be ok especially if I can stop those bloodthinner injections. I hate those things.

Lee: I can't comment on the drainage but you are in good hands with SpecialK. It is like having another doctor on call.

Jackbirdie

I think of Special as our "special consultant" I have learned so much from her and many times have been comforted by her information. Not always what I wanted to hear, but it's always good to know WHY and WHAT TO DO ABOUT IT. Information rarely gained from conversation with caregivers.

My brother and SIL just left. A great, great visit and many tears at the end. Mostly in a good way. I'm taking a needed break with Jack on the heating pad and will try for a walk later.

Allison, so glad you are feeling better

SpecialK

Thanks guys for the compliment - happy to pass on anything I have learned.

Trvler - glad things went smoothly today and your MO was more chill.

Indy - didn't realize you were in the race for rads - now I get why your PS is filling you so quickly. I think this is a good plan - trying to stretch radiated skin can be problematic. If you can fill, and overfill if possible, on the rads side prior to starting you stand a much better chance of success with exchange, and the overfill can compensate for any tightening or shrinkage from rads.

Jackbirdie - glad your visit was good, I'm sitting on my heating pad too with our dog Toby! He has the hiccups right now, lol

Carrie37

Katy, I'm so happy you had a nice visit with your family! Sloth, today I played the F*** that meditation for my friends at work. We run mindfulness groups for our students and often talk about needing it ourselves. I love that meditation! Cracks me up every time.

Question about rads: I am supposed to start three months post surgery. Is that normal? I have not even been to a consult with the RO. My BS seems to think it isn't necessary until after surgery. I am a little concerned reading about stretching on the rads side, etc.

at work three days this week. Day #2 and I am exhausted. I forgot how much energy and thinking work takes. Zzzzzzzzz

Trvler

I can't answer the rads question but I am curious what surgery you having? My new potential MO wants me to maybe be in a randomized study of the effects of rads on people with 1-4 positive nodes and a BMX. I am not sure yet until I get the path report whether I will be a candidate but I am wondering it this is a conflict of interest for the doctor. Does that make sense? I am assuming they get paid to run those trials?

Carrie37

I will be having a BMX with TE placement. I don't know if doctors get paid for running trials. Interesting thought about the conflict of interest. I wonder what the trial entails.

eheinrich

Allison: they don't get paid to run the trials per se, it's part of their job. Any time you find a likely candidate for a study it's a happy day. The question I have though is this - in a randomized trial there are different treatment arms. Some people get one, some the other, randomly. Generally the way it goes is one arm gets standard care, the other gets that plus something. They aren't allowed (from what I know via the work my labs have done) to offer you less than standard care. You should find out what the treatment arms are (i.e. what possible treatment you may wind up with).

slothabouttown

I start tamoxifen today. I was planning to take it before bed each night only because I thought id be less likely to forget than in the morniing. Has anyone been told the preferred time to take the days dosage? Per usual I got no instructions or guidance from the good old MO.

molly1976

I've been taking it in the morning because before BC I took a birth control pill in the morning every day for 20 years, so I know it'll be an easy habit. But my MO didn't offer any guidance on timing either.

eheinrich

I take it in the am, just cause. I'm better at taking morning meds than evening

BBwithBC45

I take my Tamoxifen after dinner, mostly because I'm afraid of nausea. Also, I'm hoping that any possible SEs hit me while I'm sleeping instead of during the day, so they don't bother me so much

rleepac

All this tall about Tamox vs OS and AI and I'm soaking it all in but in not there yet. Should know more after I meet with the MO and Gyn on 8/7. My inclination is to just take out the ovaries so I don't have to do Lupron shots and go for the AI. But another side of me says if it ain't broke don't fix it...and just take Tamox until I hit true menopause. So confusing!

Plus I have this serious sinking feeling like I'm gonna have to do rads after all. Nothing has changed...it's just a gut feeling.

I'd like to get off this ride now please...

Bekah

IndyGal35

Carrie, I did the BMX with TE placed 15 days ago. I have my RO consult set for next Wednesday (22 days after surgery.) I had an initial visit with her right after diagnosis, but she wanted final path before meeting again since she gauges rads plans based upon final size, margins, node involvement, etc.

I am 2B, grade 3, triple pos as well. I know that they want me fully "overstretched" before rads begin, and they anticipated about 6-8 weeks for my sim post-surgery. I see the PS today. I'll ask him how much he plans to overfill once I reach my desired size and let you know what he says. I believe that the TE/implant swap will occur 3-6 months after rads depending upon how well the skin tolerates the treatment, heals, etc. I'll confirm that with him too and report back

Trvler

Can someone please tell me about Lupron shots? I haven't read about them yet and it sounds like I might have to get them

Eileen: The way I understood it is, the trial is to determine what is the best treatment for people with 1-4 positive nodes, radiation or not and whether you get rads or not is random. But what I didn't find out is, if I do not get rads, would I have to go and they act like I am anyway? I guess no one mentioned blind study but would that be the case. I sure the F don't want to go to a rad center for 6 weeks and get nothing. lol. I did get the feeling she was foaming at the mouth a little with excitement that I likely fit her study criteria. Had to have neoadjuvant chemo with low number of likely positive nodes. lol

Carrie37

Thanks Lee!

SpecialK

trvler - it is unlikely that they will fake the rads - this study is most likely a straight up comparison between rads or not. I actually looked at the clinical trials website (www.clinicaltrials.gov ) to see if I could find the one that fits the description. If it is the one I think it is it is for early stage patients who have had neoadjuvent chemo and PCR, which would explain why they would need your pathology report before knowing whether you are a candidate. They sort you to rads or no rads. and then make comparisons about tolerance. The reason you would have to be PCR is that they could not ethically withhold a viable treatment like rads if you still had active cancer just in the name of research. Also, if this is the trial the MO mentioned it is not her trial, it is being done by NSABP and the NCI - she would just be the matchmaker. It is a massive trial at hundreds of locations. I participated in a trial just after chemo that involved a class for 6 weeks. Those non-selected did not attend a fake class, they just compared their blood/saliva samples to those of us who did attend the class. If you were randomized to the no rads arm they would talk to you about pain levels, check out your skin, etc. and then compare to those who actually received rads. They would also track your DFS over time.

Trvler

I don't think I will have PCR. I will try to find out more about the study.

Trvler

What happened to the DX's on the bottom? I hope it doesn't stay this way. Hard to read.

wpmoon

I have an ultrasound today for my abdominal pain, which is now also starting on the other side. I scheduled it for the morning since I'm not supposed to eat or drink for 4 hours prior, and figured I could just wake up and go to the appointment, which is at 9am.

Nope, I've been awake since 4:30, thanks to my anxiety. Because of course, I think the worst.

Jackbirdie

Whitney, we are in your pocket as you go through your test today. Tryto remain cálm and let us know how you are doing when you can. Hugs and mojo going out to you.

eheinrich

Hang in there Whitney ((hugs)).

Not sure what I think about the diagnosis/tx summaries. I like that it's more compact, but it is a little hard to read.....

Happy Wednesday everyone

slothabouttown

Lee,

Just want to give you a shout out of support for the drain situation. I remember mine all too well and couldn't WAIT to get them gone! Wonder if we could find a drain charm for the bracelet? Maybe a crystal one that has a little bit of fluid rolling around in it reminiscent of a snow globe?

Jackbirdie

Sloth- crystal drain charm....ROFLMAO.


Well, you will be getting the bracelet next week from Bekah! Start looking! You may have to improvise, but I'm sure we will all get it! Haha

pboi

I've been having low back pain and going for an MRI this afternoon. Wishing I could have done it this morning, this waiting is the worst.

Whitney....thinking of you today, I also fear the worst. And the anxiety is awful 😢

PB

Jackbirdie

PB- thinking of you. Hugs and mojo sent express delivery

pboi

Allison...from what I understand the Lupron stops ovaries from functioning, essentially putting you in menopause. You need to be in menopause to take the AIs.

The shots are given every 1 month or every 3 months. I did see somewhere that originally Lupron wasn't supposed to be used for more than 6 months though I'm not sure why. So if you are thinking of staying on Lupron for a period of time you might look into that. There is another shot Zolodex I think it's called that works similarly to Lupron.

I wanted to get an oopherectomy but can't because I recently had surgery and am in rads, so my MO wanted me to heal a bit first before more surgery, so I only intend on being on Lupron a few months.

I will do the Lupron shot in the next day or two and will let you know how it goes.

PB

pboi

Thanks Katy! Trying to stay distracted while waiting!

Bekah....I really agonized over the Tamoxifen vs. AI decision. My MO first suggested Tamoxifen and I liked that choice, thinking the SE overall seem to be easier. Then I started to worry about the effectiveness of Tamoxifen, especially since for me my PR % is only 5. And with PR that low there was even more question of Tamoxifen resistance.

For me I felt at my age, my stage, and being node.positive, OS and AI would give me the best chances. I'm so worried about the AI side effects, but I think if I didn't go this route I might always wonder if I was aggressive enough....it was such a hard decision.

PB

ninjamary

Regarding cancer studies...whenever they offer me one I take it. I figure I'm doing some good somewhere. I've been admitted into another study tomorrow. It consists of taking my blood via port and answering some questions. I can't remember who or what it is for, but I was really excited to be participating in it when she described it to me. Also...I love the nurse that is in charge of all the studies. She comes and visits me while I'm in the chair every once in awhile, and is calling up my MO because my neuropathy is getting worse and the MO nurse just ignored it because I only have two more infusions left. Did I mention that I can barely get my shoes on anymore because my feet are so swollen. Yep