April/May 2012 Chemo hang out
Comments
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Hello all. Just got my chemo start date today from my MO. Will be doing my port on 5/1 and starting chemo on 5/2. Doing 4 rounds of TC. Has anyone else gotten a port in their arm? According to my MO the guys who do them @ my hospital do beautiful work so we'll see.
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Hello. New here. I'm tentatively scheduled to start chemo next week, but my insurance company is being a PITA and they haven't approved it yet (side rant: who ARE these insurance people?!? I'm quickly deciding that they have no soul. But I digress...) I do have a PET scan and a mugo scan next Tuesday - hopefully after that I can start and start soon.
Little background about me: I found a lump in my left breast on February 20th. After being justled through ultrasounds, mammograms, and a biopsy (all the while being told, "It looks benign, but we'll just make sure. Just one more test...), I finally got the diagnosis of Stage 2 Triple-Negative Invasive Ductal Carinoma. I had a port catheter installed last Friday, and it went very well.
On a personal note: I'm 39, married to an amazing and fabulous man that I am blessed to have by my side, and an awesome 7-year-old son who is my life and my world.
I am so happy to have not only found this forum, but also this particular thread. You all seem pretty awesome, and I'm looking forward to beating all of this alongside you. -
@Stacie: Yippee! Enjoy your quieter home.
@Melrose : ) Love you too!
@Petagae: Since you're only having 4 rounds, in theory you could get away with no port. Believe it or not, closer to the heart is lowest risk, just b/c of physics. Bigger vein = more blood flow = less risk of infection and clots. You're not going to have your mediport that long, your overall risk is low regardless. Overall port complications (like punctured lung, clot that requires treatment) can run as high as 15%. Lowest risk of complication is subclavian (chest). Also, though it's hard to understand without someone showing you the anatomy, subclavian is by far the easiest to insert. The only downside is skin on the chest will definitely scar. But my scar looks awesome, just a thin line, they did a great job.
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Petagae- Glad you have joined us here on this thread. I have a port but really a necessity b/c my arm veins all disappear when they hear it's time to get poked plus I'll have Herceptin infusions through April 2013. I am someone who really needs to have a port.
CSMommy- Had an echocardiogram and blood lab work this past Monday and my PET scan today so I'm scheduled for chemo next Tuesday. My PET scan was originally scheduled on this past Monday but of course the insurance company initially held it up. One phone call from my oncologist and it was approved. I don't know what magic words she said but glad she did use some!
Chemo 4/24/2012Taxotere/Cytoxan X 6 & Herceptin B-47 clinical trial:4/24.5/15.6/5/,6/26,7/17.8/7. DX 2/17/2012 Encapsulated DCIS 4cm/IDC 2cm, ER+/PR-/HER2- (+1), Stage IIb, Grade 3,0/5 Nodes
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Subclavian is not the lowest risk according to my research. It is the highest risk for lung puncture b/c it is hidden underneath the clavicle. Surgeons access it by "anatomical landmarks". Interventional radiologists do it under ultrasound guidance. According to my research the internal jugular is lowest risk for lung puncture. risk is only 1%, lucky me, I had it.
As for other risks, it may be higher - I don't know, but I know it is the highest risk for lung puncture. I did lots of reading after my lung collapsed!
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Hi all,
I intended to get work done today and did some - but after lunch, DS#1 took me on a hike out to a gorgeous area near here where there are huge rock formations, not Red Rocks Amphitheatre but in the general area. We took his dog, who's extremely well behaved off leash. Weather was nice - not too hot, not too cool or rainy, and we all climbed around the giant sandstone boulders, let Kelly (the dog) chase some deer, and just enjoyed the afternoon. I was proud of myself - one thing I'd originally planned to work on this year before BC changed things up was personal fitness. I did get tired by the time we were ready to go but that was mostly because I didn't get much sleep last night.
I'm packing up my take-along bag of goodies for tomorrow - Lemonheads will be right on top, lol!
CSMommy, nice to meet you. I am so sorry so many people have to hassle with insurance - I mean, why would we want/need chemo if we didn't have a cancer diagnosis???? We aren't talking botox here. I count myself lucky every day that my insurance works so smoothly with all that stuff. My only little problem is - not planning again on being treated for BC this year - I way understimated my flex account. I've already drawn it way down and have stopped submitting relatively minor expenses like doctor visit copays - sticking to the bigger stuff like the $100 scan copays. Oh, well. It's doable.
Hugs to all! Indigo
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Here is a link to the research article I referenced for the above. Hope I'm not freaking anyone out...lung collapse is VERY rare...but knowledge is power...ask the right questions!
Update on Totally Implantable Venous Access Devices
I obtained access to the entire article. Here are snippets that reference the topic at hand:
Subclavian vein catheters are located in a cosmetically acceptable, easily accessible area; however this site has many inherent disadvantages. Because the subclavian vein constitutes the major venous drainage of the upper extremity, catheter related venous thrombosis often results in arm swelling and pain requiring either anticoagulation/thrombolytic therapy, catheter removal, or both. The subclavian vein is also prone to stenosis when used for venous access. Venepuncture of the subclavian vein is associated with the highest incidence of pneumothorax compared to other central veins. Catheter and fatigue and "pinch off" may develop due to prolonged and repeated compression by the costoclavicular ligaments and subclavius muscle, potentially leading to catheter fracture and embolization.
A large retrospective review of 774 catheters compared subclavian and internal jugular vein approaches and concluded the internal jugular vein is the preferred site for tunnelled infusion catheter placement due to the lower incidence of symptomatic venous thrombosis.
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The use of two dimensional ultrasound guidance for subclavian vein catheterization resulted in significantly fewer insertion failures compared with landmark access to the internal jugular vein or cutdown surgical access to the cephalic vein at the deltoid-pectoralis groove.
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Had my first of 4 T/C treatments today. She said my hair should be falling out in about 2 weeks. Feeling okay right now except tired. I know tomorrow is going to be a different ballgame. Overall, it wasn't too bad of an experience. I have an appointment next Wednesday with a wig specialist. If all goes well, I should be done with chemo on 6/21!
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Hi All,
Had my first of 4 T/C treatments today as well. Feel about the same as you do Karen. I went through chemo in 2000 with my first round with BC...I remember crashing the same night as treatment...but, so far so good...just tired too. Yep...he told me 2 weeks for my hair too. I managed to keep my hair through 2 TX last time....but then it fell out...I had a wig...but hated wearing it. It itched and just irritated me....so I went with hats and scarves. Looking to do that this time; not dealing with a wig.
Well..like you say, tomorrow may be another story. I get a neulasta injection tomorrow. We'll see how that goes.
Dorrie
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kjiberty-Glad you got through your first infusion and that you have joined this thread!!!
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Indigo - I see you're in Colorado! I lived there in a past life. OK, well, I moved away twelve years ago, but it seems like a different life to me. Loved it there, though.
I just spoke with my doctor's office, and the insurance company has been successful in getting my chemo start date moved out at least a full week. I still go in for my scans (at least THOSE have finally been approved), but obviously my doctor can't go forward with any treatment without those results. I've had a history of some slight heart problems, so I think she's just being extra-careful about which treatment to start me on. Which is just fine with me...but I really want to get this started. So I can finish!
My girlfriends are taking me out this weekend to go wig shopping and get my last mani/pedi for awhile. I'm hoping I can put off cutting my hair; I'm planning on going in for a short cut the week after my first treatment. Did any of you cut your hair short before the treatments? I have very long hair, and have heard that the stress of losing long clumps of hair is worse than if it is short...all psychological, of course.
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@ Karen - congratulations on completing your first treatment. I had my first TC treatment on 4/3.
@ Dorrie - congratulations too on completing your first treatment. I'm on day 17 and still have all of my hair. I did cut it short the week before my first treatment.
Best wishes to both of you. Pray your SEs are minimal and manageable.
Lynn
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Welcome CSMommy. I'm TN too and also waiting to start. Waiting on my insurance company to approve my chemo.
@Melrose, I'm starting to believe your long lost twin theory. They called me today. I go in the morning for my PET scan.
Thank you everyone for letting us know how you are doing. Hang in there everyone. I hope you all have a good weekend.
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CSMommy - I had waist length hair which I had cut off the weekend before my UMX. I went to Supercuts and for $14.95, I got a really cute bob. I told the woman cutting my hair why I was cutting my hair and to cut it short in any style she would like to cut it in. I kept the ponytail that I had cut off so I could figure out what to do with it later. She also told me to call to check her schedule because she would be happy to cut it shorter or buzz it later on after I start chemo. Right now, I don't plan to cut it any shorter before my chemo treatment and will probably do so when I feel it is necessary to cut it because of physical discomfort and because I am ready for it to go.. I was glad that I cut it when I did so I would be used to short hair and not freak out later on with such a dramatic change..
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Sandik aka long lost twin!!!! See I told you we are related. The PET scan went fine; just hoping I did't light up anywhere. Did another weigh in today so the oncologist can order the right dosages of chemo. I'm supposed to be given some recordkeeping forms for the clinical trial. No biggie; just add to my own diary of stats I had planned to keep for myself anyway.
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@dance: You're right, the risk of hitting the lung is greatest @subclavian, and if that had been what happened to me, that's what I would think about most. And I'm done posting about port placement after this, I promise.
As someone who has assisted in the OR, prefer it to IR for ports, because I think an EXPERT surgeon kicks IR's butt, which your article confirms (a cut down leaves a scar, but you can see and touch the vein, guaranteed). Looking at the data, if you consider all the scary complications and consider only the site, not technique, there's no difference, and the jugular area is at higher risk of arterial puncture than subclavian, which also sucks. Your article link wanted me to pay $31, but if anyone wants a copy, I have free access through school, PM me, I'll send you a pdf. For those of you who want the short version:
I think the important takeaway is to have a conversation with your MO and surgeon to determine if you really need a port b/c they aren't risk free, and then to make sure your surgeon does a lot of these and is comfortable with your anatomy, like any surgery. The truth is sometimes you don't choose location, your body (or insurance, or who your MO golfs with...) does. And as they say, figures don't lie, but liars figure. Some of the studies out there are more about turf war between radiologists and surgeons, so the data is skewed. However, I'm including links, if anyone wants full copies and can't get them, PM me. Cochrane, in particular, is considered a very good source of review articles:
http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD004084.pub3/abstract -
Melrose, I forgot you are doing a clinical trial. What is it exactly?
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Thanks velutha - excellent points all around! They did say the risk of lung puncture is higher in thin patients, b/c all of the structures are so close. So that is likely another reason my lung was punctured. I think my surgeon is well experienced, b/c my onc refers all of his patients to her...BUT...as someone who also works in healthcare...I know the real deal like you do - turf wars, etc. etc. One just never really knows!
P.S. I soooooo would have skipped the port if I didn't have to have Herceptin for a year!
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Sandik- The Herceptin B-47 clinical trial is determine if low HER2's (+1 which is considered negative and standard treatment is not to give Herceptin) benefit from receiving Herceptin as part of their chemo treatment. It just opened up in January/February of this year. Researchers went back at prior clinical trials and determined that some of the participants were really negative/low HER2 scores and did benefit. If you look at your pathology report and find your HER2 score it may show numbers 0,+1,+2,+3. The people with scores +2 or +3 can only receive Herceptin under the current treatment standards; people with scores of 0 or +1 will not be given Herceptin.
Here is a link for you read about the clinical trial:
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Thanks Mel. I saw my oncologist today for an hour and left feeling like I had seen my MO, a spiritual advisor,and a therapist. I feel confident he is the best doc for me regardless of the outcome which he and i agree is in God's hands.
MY HAIR STARTED FALLING OUT so I shaved it and my hubby did his in my honor. We took a pic and I put it on fb. 70+ people commented or liked it in an hour. I felt such love. -
Hi, this is my first post. I have already had my a lumpectomy and reexcision. I am suppsed to start chemo next week- TCH x6 and then Herceptin for the rest of the year. I have been reading these boards everyday for the last month. I have learned so much and I am so grateful for them.
I went to have my MUGA and they said I have really bad veins. It took 4 different sticks to finally get my IV started. They recommended a port. My surgeon had suggested I try to use IV in stead of a port because of the risk of complications and an IV is less invasive. But now I feel like I should get a port. There is a possiblity I can get a port on Wednsday the 25th and start chemo Thur the 26th. Is that safe? I am concerned about healing from a surgery while having chemo in my system.
What are your thoughts? Thank you for any information or opinions you have.
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So surreal..... today was such a normal day - and I kept swinging back and forth between feeling confident about tomorrow and feeling like I can't believe this is happening to me. Guess I've had longer to think about the chemo than I did the surgery. But at least I feel like I know as much as I could without actually having the experience.
Soooo - the big boots are by my bed, ready to strap on and get to kicking cancer butt.
Hugs to all! -
Stacie- You and your hubby must look like a really hip cute couple now with the new haircuts!!!!! Hoping everything else is calming down for you now. Glad you had a chance to sit down with your oncologist and just chat. I'm sure that was a stress buster and both of you are so right---- we can only do so much to help ourselves and the rest is in God's hands. Have a wonderful weekend with your sweet hubby!
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Well fellow warriors, I got my wig last night. Took my 22 year old daughter with me and she helped me decide between the two I was considering. I didn't have the nerve to have the lady shave it last night, but I may have my daughter do it this morning. I am going to shower with my own hair still longer, once last time, just to convince myself to shave it off. It really is like slow torture to have it coming out in clumps all day. You would think I would just bite the bullet and do it. My husband wants me to shave his this weekend. My daughter joked about shaving hers in solidarity, but I really hopes she doesn't because she has long beautiful curls. My 17 year son is going to the prom in a few weeks, so he said he won't shave his. And my 24 year old son is in the military, so he pretty much has his buzzed off all the time anyways! I have woken up with a bad headache the past two nights. I am wondering if it has anything to do with the chemo working in my skull area right now and killing off all those hair follicles!
About the port, mine is higher than most and goes into the artery in my neck. I can't say it hurts, but it is uncomfortable and I always know it is there. I am thin, so it really bulges out of my chest. I am finding it hard to dress for work every day and finding something to hide that sucker. I wonder if down the road when I have the "exchange surgery" if my PS can be the one to remove the port during that surgery. I feel she may do a better job in stitching me up and making that scar less noticeable. I have a scar on my neck and on my chest near the port. I never in a million years thought that I would be going through all this crap, as I am sure you all feel the same way!!
I hope everyone has a stress-free weekend and can rest and heal.
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mcm: I asked my DH to grow his hair in my honor : ) He normally keeps it short. The joke was that he wouldn't cut it until I had hair again, but we had a family wedding last month and I knew he wanted his old hair back for pics, so told him he'd had enough. Maybe your daughter could do that? Guess it depends on how long her hair is already.
Good luck all of you starting treatment! I think the anticipation is worse than the first treatment. Bring someone entertaining with you.
Ladybug: I said I was done posting about ports: My MO sometimes starts treatment the same day. I agree with you, I was concerned about healing. On the other hand, it does take about 7 days for your counts to hit bottom, and they are going to cut along that same line later to take out the port and they can cut out some of the scar tissue then. Do what you think is best, and after 48 hours smear aquaphor or vaseline on that scar and keep it covered for a week so it never scabs. Dermatologists looove aquaphor and vaseline.
Consider asking your port inserter about your PS doing the removal. Depends on the surgeons. My BS left me with great scars, so I wasn't concerned about who did what (though the PS left pretty scars too, of course). Also, BS could take the port out in his clinic 14 days after my last tmt. PS won't touch me till 30 days after tmt, and I can't wait to get this thing taken out!
Dance: ME TOO! So didn't want a port, I HATE central lines and think they are overused. But fortunately mine has been uneventful.
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Hello Ladies, Just popping in to wish you all good luck. A few things that helped me were ginger-ale, popsicles, and fudge bars. Even when most things tasted bad, these didn't.
Melrose, have you thought of donating your ponytail to Locks for Love? For those of you who haven't started treatment yet, I wondered if you had heard about cold caps. I used them and kept all of my hair.
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ladybug - just an FYI that there is also a thread specifically for us TCH gals here. Lots of excellent advice specific to the regimen. (oops - edited to add - I see you found us already!)
Regarding the port/use right away, you will see many different opinions on that one. Many get it and use it right away without incident. My onc's opinion was that the risk of infection is higher if you use it immediately, and he wanted me to wait a week to allow it to heal before doing chemo. I don't know what the right answer is, but I'm glad I did that, b/c my nadir dropped to Grade IV neutropenia after chemo (I did not have neupogen the day after the first treatment...you may want to ask if you can). I'm glad that the majority of my port healing happened when my immune system was intact, rather than now when I am on neutropenic precautions and am petrified of getting febrile neutropenia (I am now getting neupogen and prophylactic Cipro).
Hi Laura - of course you know me from the cold cap thread - yep, I'm doing them. Only one treatment so far...waiting for day 14 to 21 to see how much shedding I get!
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Laura5- Thanks for the cold caps suggestions. I don't think my oncologist approves of them since she's the one who told me to ice the toes and finger nails during infusion and to paint them with clear nail polish. As for the ponytail, I may use the hair for a hair halo or wig (since I have 2 other pony tails already) or will donate the hair to Locks of Love. No matter what, that hair will be put to good use!
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I tries to hide my port because tbe scar looked bad but now that it's healed, I am over it i wear whatever w/o thought of it.
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Hi ladies - getting ready soon to head off to the chemo lounge, but just wanted to mention to those of you who are interested in the T-shirt head wrap, I found lots of T-shirts at Walmart last night in really pretty colors - all for about 4.99 apiece. They are the fitted style, not boxy - so while if I were to wear them I'd pick a medium size, I went with large hoping they'd be loose enough to twist up. I haven't tried it yet; will post about how well it works.
@CSMommy, about cutting your hair short before treatment - yep, I did, too. My hair wasn't waist length like Melrose's - I'd had it in a shoulder length bob forever. I decided to do Michelle Williams' cut and I actually love it. At least I hope I get to enjoy it for a couple more weeks. My sons are doing the buzz for me when it starts to go. We'll see if they do theirs too. I think they just might from what they said last night, even though I told them they don't have to. (poor DH will look like a rube!!!) Our peeps are just the best, aren't they?
Chugging water so hopefully I get a good stick the first time - don't want it to be like the day of my surgery was!! DS#1 is going with me and bringing his laptop so I can finally watch Bridesmaids - it sounds like I'll be there long enough today to watch the whole thing.
Hugs and happy Friday to everyone.
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