April 2011 chemo
Comments
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Sarah, sometimes our doctors aren't real aware of lymphedema, especially when it affects our breasts or chests instead of just our arm. But you might want to request a referral to a well-trained lymphedema therapist for evaluation, especially since you're just starting rads, which can make lymphedema worse. Here's how to find a qualified therapist near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmAnd here's a page about chest or breast lymphedema (which is called truncal lymphedema):
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htmPlease don't wait around on this, because early treatment makes lymphedema easier to control and helps you avoid the serious, systemic infections that come from stagnant lymph fluid.
There are many of us with truncal lymphedema over on the Lymphedema board here at bc.org. Please do feel welcome to drop by with any questions or concerns you might have.
Be well!
Binney -
Hi Scc218 Today I went and talked to the radiation doctor about all my fears. She told me it was best to get the radiation and that they will be careful, where it comes to my heart. I had the whole conversation about how radiation prevents cancer from coming back. Even though I signed the consent form, I'm still not a hundred percent sure that I will get the radiation. Especially after just reading Binney4's post.
Hi Profbee I have an appointment for Thursday to check for Lymphodema. The radiation doctor thinks it most likely is Lymphodema in my left breast and arm. Just what I don't need. Besides all of this aggravation, the right side of my face has swollen for reasons unknown to me.
Hi Artiecat I almost refused treatment for radiation today and still might. We are here whenever you want to talk.
Hi Binny4 Thank you so much. I didn't even know this information. I will jump on it right away. I really needed this information. Thank you for inviting me to that thread. Wow, didn't even know that you could get an infection from this fluid. Not one of my doctors or nurses told me anything about lymphodema in the breast or that the fluid could cause an infection. Today the radiation doctor casually mentioned that the radiation could cause fluid in the arm.
Sweet blessings to all.
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Sarah, the last thing I want to do is discourage you from treatment needed to defeat the bc beast!
Nasty as lymphedema may be, there's no comparison between that and a cancer recurrence.
The good news is, with prompt treatment you will be able to gain control of the lymphedema, reduce the swelling and the infection risk, and keep it that way. No such assurances for recurrent or metastasized breast cancer.
Unfortunately your doctors and nurses are not unusual in ignoring lymphedema or the risk of it. It's not a subject any specialty claims, so it's sort of an "orphaned" condition. So good for you for researching it! This all gets easier, honest!
Hugs,
Binney -
Binney4 -- Thanks for the lymphedema links. I was unaware of breast/chest lymphedema and also unaware that radiation can contribute to it. Something else to add to my "fear" list. However, I do totally agree with you on the recurrence/metastasis issue and still plan to go ahead with rads. I went to a lymphedema specialist a month or so after my surgery, and she was very good. I was mainly interested in finding out preventative measures to take, etc. I may go back and see her again and talk to her about the radiation and refresh my memory on prevention, etc.
Sarah246 -- I hear you totally on the fears. I asked my onco a month or 2 ago why I had to do rads when I had a BMX. He bluntly told me that, since I had to ask, of all their patients, I am in the catergory of most likely to die from breast cancer -- just what I wanted to hear -- and so they want to do EVERYTHING possible to make sure they got it all and to keep it from coming back. After I recovered from his bluntness (by the way, I love my onco), I decided that I was onboard with the plan. Mind you, before I was diagnosed with BC, I swore I would NEVER EVER go through chemo or radiation if I was diagnosed with cancer. I was an "alternative medicine" type of person. However, once you're diagnosed, things change a bit, and there's family pressure, peer pressure, a gazillion questions, and there are no other alternatives in the "medical world." Anyway, I'm getting a little carried away here. Bottom line, I'm going to try to put my fears aside and go ahead with the rads.
Radiaton question -- my medical onco said rads should start within 6 months of surgery. The rad nurse said it should start 4-6 weeks after completion of chemo to give the body a chance to heal. Has anybody else heard these timeframes or different ones or none at all? My rads will start 8.5 months after surgery and 5.5 weeks after the end of chemo.
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Hi scc218. My surgery was in early march, started rads this week 5 weeks after chemo. guess it's just how it works out, if chemo was delayed the they will still wait at least a month after before starting rads.
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My surgery was March. My rads was scheduled to start 3 weeks after chemo. Now that my last chemo has been delayed to next week, I will only have a 2 week gap. My onc thinks that's fine.
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Forgot to add that I will also start Tamoxifen 2 weeks after chemo ends. That will be interesting. My onc spent quite some time the other day going through SEs. Has anyone started Tamox?
My onc is taking an aggressive approach, such as a quick start to rads, because of my 12 positive nodes. I am classed as high risk for recurrence. SCC218 - you have lots more nodes than me so would be in the same category. It sucks being Stage 3c -
Hi Binny4 That's good news hearing that prompt treatment will be able to gain control of lymphedema. Don't worry about discouraging me from treatment. I had fears before. It's wonderful to have the new information you gave me and to know to seek prompt treatment to reduce swelling and infection risks. I didn't even know you could get an infection from the fluid. To think the lungs are right there is scary. And thanks again for those links.
Scc218 I decided I will be getting radiation also. But I do still have some fears. I laughed about what you said about your Onco. He was blunt. It's a good thing you like him. Don't worry about getting carried away. I love hearing about your experiences, because I have experienced some of the same. Oh, my surgury was Feb. 1st and scheduled for radiation next week.
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Okay, I'm not going to worry about the timeframe of starting rads. I'm assuming it's all in the "proper window." You're right, KiwiMum, it sucks being IIIC.....but it still sounds so much better than IV.
Sarah246 -- glad you made a decision on the rads. Fear is tough to deal with, but I know I always feel better when I make a concrete decision. I don't always know if it's the right one or not, but I hate the wishy-washy feeling.
Had my LAST CHEMO yesterday and my LAST NEUPOGEN injection today! Hooray!! Now my hubby and I are heading out in the RV tomorrow for a road trip to Nashville and the Smoky Mountains. Really looking forward to getting away from doctor's appts, chemo drips, etc. Looking forward to some fun and relaxation. Unfortunately, I'll still have to work, but it will just be nice to "get out of dodge." Hope I'm feeling good and it's everything I'm dreaming of.
Hang in there, everybody! Sending hugs to you all......
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Yay and congrats Suzy C. Finishing must feel fabulous. Enjoy your trip and break from it all. You deserve it.
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I have done 28 of 33 RADS. Right next to my armpit is raw and the skin is peeling off. It was painful, it looks just like a blister where the skin has come off the top. I was very careful and did everything they told me too but my skin still broke down.
I have the 5 boost RADS left and that is next week. I just got back from vacation yesterday. I flew to North Carolina to welcome my Marine home from Afghanistan.
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Keep the faith, Annie - you are almost there! So happy to her that your Marine is back safely! We honor his efforts!
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Hi everyone, the men on the bus to the rads clinic are now treating me like a little pet. It's so nice.
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axtella, how awesome that your "marine" is home from afghanistan. I'm sure it will all be better with him home with you. please thank him for all he does from me. {{hugs}}
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Scc218 Thanks, I hate the wishy-washy feeling also. Have a wonderful trip, you deserve it. I agree, finishing up must feel wonderful.
atella Sorrry about your skin and the best part is that you're almost done. Tell your marine thanks for his service from all of us.
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Hi,
How are you doing now? I had dx in March and a mastectomy on April Fool's Day and FEC-D after the muga and pet scan. I am doing some extra weekly rounds of paclitaxel before chest wall radiation. Did you have any extra chemo? Have you had a 2nd pet scan -- are you worried? -- does everyone usually get more serious problems Or are some of us cured just from the surgery. Hoping for the best.
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axtella, brilliant your marine is home safe. brave men
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I cant believe it! I have hair on my head!!!!! Just a fuzz but it is there!!! Woo hoo!
Also, yesterday went to an arts/crafts fair with my dtr- spent the afternoon outside in 90 dgrees, then we went to a new microbrewery and chatted with folks for a couple of hours! And I still felt good to go after all that! Wow! I am getting it back!!!!!!
Have any one been to the Look Good, Feel B etter class? I am going tomorrow.
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Articat
SO glad to hear you are feeling great. I went to the look good feel good class and loved it. They gave me a ton of free makeup and I learned how to put it on so it looks natural. Helped a great deal.
I am also starting to feel like my old self again. Energy is finally coming back.
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Merilee: Glad to see you are computer enabled and back online.
I am doing better with this round of Taxotere after getting a 20% dose reduction. I am getting 60 mg instead of the 75 mg I got last time, despite the fact my oncologist wanted to raise me to 100 mg. We'll try the 75 again next round if I do well this time.
I don't think anyone really understood the depths of my brain issue with this last round of chemo. Looking back, I am stunned. I did things like staring at my car and swearing it wasn't mine... picking up a menu and not understanding how to hold it without knocking over the water glass because it was suddenly the size of a bulletin board... freezing mid-stride in the middle of my living room like a statue staring into space for minutes on end.
Scary.
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Hi All,
Feeling good...working, almost feel like myself again. Energy still a little lagging but I'll get there. Getting ready for our Harvest Fest weekend, brew fest..chilli cook off...music. Lot's of work, but it will be fantastic.
Congrats on the hair Artiecat! And welcome back Merilee....
Heres to a great week.
Sue
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Merilee!!! Welcome home!
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Thanks everyone
Windlass I do get it regarding the brain issues. I likened Taxotere to a bad acid trip I could not get off for 4 months. I lost days, don't remember being places, or visitors. I even forgot how to turn my shower off. I have lived here 15 years. Yikes right? The good news is that I have recovered except for some short term memory issues that I am still working on.
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So, I finally get up the gumption to look into a live support group. Time is something I have NONE of, but I've been feeling like I could possibly sneak away and try it. It's cancelled this month because it's breast cancer awareness month and they're having a speaker/event later in the month. Wow. Let's CANCEL the support group because it's breast cancer awareness month! This happened with TWO support groups I called. Hard to believe. Really--sounds like a great group. ugh.
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how did I mess up my font?! ugh. I need to go back to bed today.
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hey ladies - now you know what it's like to be Bipolar. LOL
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I am done! My last chemo was today and I made it. I'm doing my own special happy dance.
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Yippy Kiwimum! You are outa there!
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Kiwimum: Dance on!!
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