Any April/May 2012 rad girls out there?
Comments
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Awesome! Yes hun, I'm on rad to try to shrink these fruckers because the pain is so unbearable. I actually feel good and hopefully rads will help. I can already see that that the ping pong ball size tumor in neck is 1/2 the size it was last Wednesday! Of course I'm on so many pain meds I'm not feeling any right now. I'm good with that! Ok, we'll ride this together.
I'm in NE OK, Tulsa. Oh, join the chat rooms! We talk there when otheres are on. A great group of people.
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I start Thurs March 29th for my RO visit and 1st dose. I have no idea what to expect and was told 6-7 weeks. I am so glad I have joined this site, I can not belive how much I am learning. The one thing I am concerned with is the Lymphodema that may occure at anytime. I teach preschool gymnastics and am constantly lifting and twisting the kids around. I am always sore after class. Does anyone out there wear the arm sleves? The therapist gave me a prescription to have one fitted. I am stretching the shoulders everyday hoping that that is where i am feeling most of my discomfort.
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Exercise is good, but be careful of over doing it.
I don't wear sleeve but I have all the pain
My PT gave me a huge blue ball to exercise with. I can sit on it and bounce, it helps to get those nodes active to help drain and minimize some pain. She also told me to get a mini trampouline which I use to do light jumping jacks. It's wonderful! This keeps me from getting any swelling.
I hope you try some of these, and I hope you feel good!
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Hi Ladies - May I join your group?
I actually started rads last week - first dose was Thursday after two visits for simulation/planning. I'll be continuing through April and the first week of May. CT showed my chest anatomy is such that my heart rests directly against my ribs, so I am getting IMRT (a variation of traditional rads) that somehow bends the beam to avoid radiating my heart and lungs. Today is my third treatment, and I'll finally be getting my tattoos. Perhaps it's just me, but it scares me a little to think of how many lifetimes' worth of radiation exposure I will have received by the time I'm done.
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Hi there, I start rads on Monday April 2. Had my planning session yesterday. And received my tattoos. I was handed skin care instructions and the only thing my RO says to use is aloe vera gel, which they gave to me. The other instruction is to use cornstarch in areas of the breast that have folds (like underneath the breast) - basically anywhere sweat and moisture collect - don't put any gel or moisturizer in the folds). I had 4 months of ACT chemo (sept - dec 2011), had BMX on 2/23 and am receiving herceptin for a year (ending in December). (I had IDC, tumor was 10.5 cm, ER-, pr-, her2+)
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Hi ladies!
Another Canuck here to join up with the group. I've updated my diagnosis, well my current one anyway... I happened to have two primaries caught at the same time and involves both breasts. My first tangle with breast cancer though. Just lucky I guess. Get it all over with at once. For those of you that aren't familiar with my interesting story, please read my post "Why Chickenpants was absent" and you'll see I like to live life on the edge! Kidding girls... Anyhow, I am due to have both sides radiated starting on April 10th. Did simulation on Monday. Am taking full advantage of all resources available such as counsellor, nutritionist and healing touch/relaxation therapies and free flights for weekly treatments (Angelflight).
16 treatments each side with additional four boosts to invasive side with cauterized margin. I expect this to be a walk in the park compared to what I've been through.
I'm a positive and resilient person. Allow me to be the coxswain for our little pink boat!! -
Oh, and about those tattoos... I asked the technician for an extra little one and told her it should say "bad-a$$ed Chick(en)". She laughed.
I see things a little differently now, so please excuse weird sense of humor! -
You go girl!!! LOL Sick sense of humor is a good thing here! I am on a 25 + 3 booster cycle of radiation with chemo every week. Today I had my 5th rad. So far, so good. Not really much to say on it, just have the raspy, laryngitis type of voice. My chemo is Abraxane, and it's the 12th chemo I have had in 18 months! I lost my hair back in September, 2010 and it hasn't come back. I'm doing ok. Hard to say what is good and not so good. I'm fuctioning and living, that's what matters to me. I'll continue treatments till they say there aren't anymore, LOL. Stay positive and Don't Quit.
Welcome to the forums all
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Hi Ladies- mind if I join? Just started rads today. I'll have 25 tx over 5 weeks. Had the simulation and CT scan last week, a dry run yesterday and the actual tx this morning. I opted not to have tattoos (don't think the technicians were too thrilled with this, but my RO was very accommodating to my wishes). Anyway, it went really quick! Walked in at 9:25, swiped my card, (appt is set for 9:30 everyday) got changed, technician was waiting for me, got the tx, back in my car at 9:34. Hope it's that quick and easy each time!
My center employs a former Olympian (Abby Peck) and I'm meeting with her tomorrow at 8:30 before tx to start doing exercises specifically for BC patients. I can meet with her as much or as little as I want. I'm looking forward to it!
I just finished 4 TC up on March 2. Had a BMX with TE on 11/11/11 and will have my exchange surgery probably late summer, depending on how my skin holds up.
I'm glad to have company thru radiation.... -
Chickenpants, as they say laughter is the best medicine (and anything is better than the medicine we have received). Read your recent story - wow, God bless you!! I look forward to sharing some laughs on here with you and the other members of this club we never wanted to join!
Cathy -
Bummer - my treatment for today is cancelled because the machine is broken. I was supposed to see the RO today too, and I was told I'd see one of the other doctors later in the week. It also means I will have to "make up" the missed treatment at the end, so I'm barely out of the gate and already have one extra day tagged on to my schedule. Hope this isn't a regular occurance :-(
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I'll be joining your group soon I believe. Original plan by MO was for me to finish chemo April 12 and start rads the next week. However, that is looking to be delayed. Problem is (and I put this out to MO when we started this whole process), we have a trip planned mid-June that I *will not* miss. This is our "family-moon"... the celebration of our blended family. My husband and I got married last year and this trip has been planned, and booked for over 15 months (and is now paid for). I know I cannot interrupt treatments, so if RO isn't willing to start my rads immediately after chemo, then I may need to move out to a June 2012 group, I guess!
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Hi RuthieG,
I don't know that there is an absolute timeframe within which rads must start. I did neo-adjuvant chemo, and my last tx was December 8th. I didn't have my breast surgery until February 7, and my first rads was just last week, a full 3 months after chemo. I also have a friend who had to wait 5 months for rads because she developed MRSA in her breast incision. I congratulate you on being able to start rads immediately after chemo - you must have tolerated it very well! They usually want you to have at least a few weeks to recover. Good luck, and happy "familymoon"!
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Just got a call from the RO's office. They postponed my dry run that was scheduled for tomorrow to Thursday, apparently something on the cat scan last Friday caused them to decide to scrap all the set up work they did then. Want to do it all over on Thursday and are thinking a face down position would be a better choice for me. RO doesn't have enough time to do it tomorrow, but he can be there on Thurs...
Hurry up and wait.
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Hi Momof3boys:
I also did BMX w TE's and all of your diagnosis info. is almost exactly like mine! I do simulation 3/29 and start rads 4/2 for 28 treatments. I was wondering what your PS and RO had to say about radiation with TE's?
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Hi LovesDogs, they don't think it's going to be a problem. I'm hoping they're right! My PS "filled" the TE's to an agreed upon point with my RO. After radiation, he will resume filling them. Depending on my skin reaction, they'll schedule my exchange. They both said it could be one month after rads or a few months... Depending on the skin. I'll see my PS every other week during rads, just so he can monitor. And the RO every Tuesday.
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She_is_virgo: wow, you are doing radiation at same time as chemo? I give you a lot of credit. I would not have been able to do that with the SEs I suffered from chemo. Are you experiencing any SEs from chemo? I hope not. Good luck with your treatment.
Meant to mention in my first post that I had immediate implant reconstruction at time of my BMX - in case anyone has any questions. I discussed it with my RO and she said she would be able to work around the implant (I have read on this board of PSs refusing to do immediate implants before rads or not recommending them - depends on your PS but also (and more importantly i think) on RO since he/she plans the rads). And since i was told (i think) that there's a 50% chance of capsular contracture with both the immediate implants and the implants after TEs, I opted to go with the implants. (if I am wrong about about both of these having 50% chance of cc, please feel free to correct me). My best friend is a radiation therapist and she said that ideally they prefer to work on the breast with nothing in it/flat, but that isnt always possible. My main motivation for getting implants right away was to avoid an additional surgery (and avoid TEs if at all possible - while my PS said he believed he would be able to do the implants right away during BMX, it all depended on what he saw when he operated - i could have ended up with TEs) but that may be a moot point depending on the affect the radiation has on the implants. Plus I've read a few different comments on this forum about the fact that irradiated skin can pose problems for implants after radiation and I didn't want to take a chance on not being able to have implants after radiation if i opted to wait. Finally I opted for the implants first to see if they would work because if I opted for a flap, I don't believe there's any "going back" since it's your own tissue sewn into the breast (i could be wrong). I wanted to have the option to do the flap if implants didn't work out and/or my skin didn't hold up well from radiation. Whatever road I chose, I knew each would have its own risks and possible complications; it was just a matter of deciding what i waswilling to put up with and what i was willing to risk. -
Going this afternoon for planning CT for rads. Never had any kind of CT. Have developed what might be the beginning of LE or cording. Will call MO later to see who (MO or RO) wants to see about it. BS out of town until next week when I have LX followup. Don't think this was there day before yesterday. Feels like a tendon with tiny lumps in it. But there is a similar tendon on non-surg. side though I have to work to feel it. Gosh, I'm a nurse but this is sure way out of my field Know I will have 28 regular tx with 5 boosts guessing to start end of next week unless they always start on a Monday then it would look like April 9th.
Our group is growing, sadly, but glad everyone has found there way here.
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Luvmygoats: I never had any kind of CT before either. It wasn't bad... It wasn't enclosed, and the blue thing they put under you to form your head, neck and arms for the tx was actually nice. It becomes warm as it shapes to your body.
Just got back from my 2 tx... Went to the physical therapist that I talked about in a post above. She was very nice and helpful. Also, ran into Rudy, the therapy dog at the center today. He's very cute and has his own business cards right out front! Ha! -
Hello everybody!
I will be going for my cat scan and simulation on April 11. I am hoping to start Rads the next week if all my blood counts have stayed up where they are suppose to. I had my last chemo last Tuesday and I am still suffering SE's from it but every day it is getting a little bit better. Emu oil was recommended on another group for the skin during Rads. I am going to have 5 weeks since I was given a boost during my lumpectomy that cut 2 weeks off of the radiation.
Gayle
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Had the CT sim today with tatoo placement. 3 little dots in center of Sharpie X marks. Go next Friday for something else with planning though only 30 minutes or so.
Momof3boys - If I get the cushy blue thing it will have to be next Friday. My rads will start April 9th. Silly me I picked 7:30 am. Had good selection of times. Kicking myself should have picked late afternoon. Had to work around certain times in my work schedule which either time would work. RO thought what I felt under my arm not serious at this point and not something to delay rads schedule. Thought might be tiny venous thrombosis. Did not think it was LE or cording. Have followup with BS next week. Course will be on lookout for edema or anything else unusual. Very pleased with center. It is main one here in Ft. Worth but I have been treated as if they have all the time in the world. My RO doesn't seem to have the strictness I've read about like no deod., cornstarch only, etc. Only said no deod. 2 hours b4 tx and no heavily scented soaps. Have presc. for Xclair cream ready to be picked up. That and Aquaphor are her recommended.
Gayle - Hope your counts stay up. I bet you're ready to be done with this already!
Those of you who got rads cancelled for the day back on track? Gosh, do they call you ahead of time? Please say that they do!
Anybody else on tonight? Doing work online and peeking here in between.
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They called me Tuesday AM to postpone Wen. Aft. so yeah ...
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How's everyone doing? Hoping that each of you are taking care of yourselves!
Momof3boys: now that's what I call quick service! Glad your first rad tx was "easy". Just wondering how your session with the physical therapist (Olympian) went? The only thing I found lacking with my PS was his lack of instructions for post op exercise. I had to ask his nurse if she had any handouts with exercises but she told me the BS office would give me instructions - i forgot to ask BS at next appt - so at next PS appt I ask the nurse again and she looks around the office and finds a book which is the office's copy and writes down the name of it. The reason I'm saying all of this is because when I got home I contacted BS's nurse and asked about exercises - nurse tells me that PS was supposed to provide them, particularly because they (BS office) have strict orders not to provide the instructions, that PS will provide exercise info to patient - go figure! To make a long story short the BS's nurse sent me their exercise instruction handout but the major benefit of the call was that she set me up with a physical therapist with whom I will be meeting on Friday afternoon (don't think she's an Olympian though - LOL). I just wish that I went to physical therapist 2-3 weeks after my surgery. I am 5 weeks post op today. Hoping the delay won't cause any issues for me.
Luvmygoats: about the cornstarch, just wanted to tell you what my RO's nurse told me (I apologize if I'm repeating information you have already received). She told me the cornstarch is to be used in any area of the breast and around the breast that has folds where moisture/sweat would build up - you would use the cornstarch at the time you are putting cream/ointment on breast (hmmm, dont hold me to that last statement - maybe they want the cornstarch on you at time of rads so that it soaks up moisture - i will find out and post the answer tomorrow (today technically)). It will help keep the fold area(s) dry. She said the fold areas tend to peel the most but the cornstarch will help reduce it. Also my skin care instructions say about deodorant that most or many "contain aluminum which may worsen the skin reaction in the area". (quoting skin care instructions from RO). They suggest either Tom's of Maine or Crystal all natural deodorant or plain cornstarch. Of course I write all this just to convey/share information I have been given with the understanding that every doctor is different (and situation is different) and has their own procedures or instructions. Just want to put it out there for others.
Just wondering if anyone is using any kind of ointment or cream/moisturizer on their BMX scars? My PS mentioned something but can't remember name of it. (I know there's a scar s.o.s. thread which I'm going to browse now but figured I ask my fellow rads peeps for recommendations.)
Thanks everyone!!
Cathy -
My rads so far is pure agony.
I had simulation few weeks ago, but had planning session yesterday. I had both arms folded up above my head for a hour yest.while they did ct measure ments I think they are trying to be extra careful cause of my TE. Then I think I overworked my arm at gym yest day. Then I was miss cranky and hubby was too.ended up having fight then I just cried like baby in his arms
I've just been so emotional this week. Def having hot flashes with mix of when its this crap going to be over. Was crying like baby waiting to go in rads. My TE and arm don't exactly feel great. Have some cording that isn't that bad, but won't go away.
Came out of rads yest with black sharpie marks on chest.and the shirt I had on showed my marks. If someone asks I'm going to say they are chinese for cancer sucks -
Hello to those on rads in April/May. Finished chemo Mar. 14th &I see the RO on Friday to find out how many treatments I will require & when I start.
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I am new to this forum as I found out my final fate today after meeting with MO. I have 1st rad appt is next wed and we will go from there. I am hoping that I can get in after work everyday as facility is by my work. MY lx 3/13 area is still swollen and black and unsure if they will start or untill it is healed fully. Boy this whole process has been one heck of an emotional journey. I am lucky to find it in such an early stage. I look forward to reading and helping each of us through this. Im sure I will have a lot of questions...
Kristi
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fredntan, so sory you had a rough planning session. I hope that's the worst of it for you.
I've been telling people my sharpie marks are "tatoos for people who can't comit"
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Cigi56- the physical therapist (former Olympian lol) is provided by the MO and RO's offices. My BS never mentioned anything about exercising, and my PS actually tested my strength and measured my arms (for possible lymphedema?) before my surgery. But, didn't think I would need physical therapy, and I really don't. I just want more exercise and like the idea that this is a place for BC patients only, and she's really careful. She knows I just finished chemo and have TE's in place, and just started rads... There were a bunch of BC women there, at all stages out from BC... One was finished with treatment by 2 years. I like the idea that I'm not walking into a gym and having to explain my life from A to Z to a trainer...
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I know what you mean. I just joined this gym. And she introduced me to a trainer. I almost fell out of my seat at his prices. 75 for 1. hr.or 70 if you bought ten out more. Yikes! I don't think so. I'm bringing xanax to my rads tomorrow
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Fredntan:
Boy, can I sympathize with you! I totally understand how you feel. Sounds like it was a week where everything was hitting you at once while you were already emotionally fragile from this disease and you needed to release it. :-( As I'm sure you know (and I certainly don't want to sound like a preacher so please dont take it that way), it's perfectly normal (if normal is a word that should ever be used when discussing cancer) and indeed important in my opinion to release it in whatever way your body and mind decides to do so. And with all that we are going through, the cherry on the top that makes us all warm and fuzzy (literally) are the hot flashes. Man, those hot flashes are BRUTAL!! Holy cow! To me, the hot flashes are often my breaking point when I am having a difficult time. I had a bad week last week and my body and mind's reaction was to mope around the house, sleep, cry, avoid the outside world and basically have a pity party (of course this occurred during the first full week of beautiful weather in NY which made me more miserable b/c I had no desire to go outside). Usually I beat myself up when I have days/weeks like that, but under the circumstances I have lightened up on myself lately and have allowed myself to have those days.
I don't have TEs, had immediate reconstruction with implants. I have read many postings about the uncomfortability/pain of the TEs and my heart goes out to you having to deal with the added nuisance. I had my simulation today and it went ok. The only complaint I had is that my arm eventually fell asleep and under my arm felt like a tight rope was being stretched. But with the rads, the tx itself shouldn't be more than 5 (maybe 10 depending on patient's rad plan) minutes so that's a relief.
Luvmygoats: double checked with nurse about cornstarch. It can be used in breast folds/under arm when you are moisturizing your breast. Additionally you can, if you want, apply cornstarch to the breast folds/under arm or any other moisture pro gathering area prior to treatment and the cornstarch can remain on you during your tx. This makes sense to me since, I'm assuming, the fold areas will begin to sweat during/immediately after tx and the cornstarch will absorb it.
Additional note: the reasons I am expressing/sharing the skin care instructions, aside from the fact it's helpful information, is b/c I feel that I wasn't given very good/or detailed post-op care from my PS (and it really made me feel lost). I received the hospital's general post breast surgery discharge instructions, but nothing more specific, particularly the exercises I should be doing ( and when I should start, for how long, etc), information on looking out for lymphedema and things you can do to help prevent it, a general idea of how often I should follow up with doc for rest of my life, should I be putting ointment on my scars, should I be massaging them, etc., etc. With that said, two more things. Another item listed on my skin care instructions is regarding vitamins: "no anti-oxidant supplements & no green tea. Stop all anti-oxidant supplements and green tea a few days prior to the start of radiation. You may restart them two weeks after rads completion." Second, my RO nurse provided me with a list of 18 steps to help prevent lymphedema. If any of you are interested in this information, I would be happy to type the list up and post it in this thread. Let me know. You can also find out info regarding lymphedema @ http://www.lymphnet.org/.
By the way (and this is true for anything you read on here or elsewhere), as you already know, if you decide to follow any of the advice/instructions that were provided to me that I have posted but which your doctor did not specifically tell you, you should discuss it with your doctor before doing so (I'd say this is a cancer patient's mantra since everything you read says "check with your doctor first" along with your name and date of birth - if i had a dollar for every time i have had to state my name and DOB since i was diagnosed, i would have a nice wad of cash by now! LOL! Not complaining about it though since it comforts me to know that they are double checking they have the right person and giving the correct tx to that person.
Ok I will leave you all alone for now. Sorry for all the long posts. I start out with the intention of posting something quick, but then my mind starts going and all these things pop up that I wanted to say or ask about.
Cathy
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