Any April/May 2012 rad girls out there?
Comments
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Momof3boys: thanks for sharing your experience with PT. I've never been one for exercising (terrible, I know) or to go to a gym. But since my insurance covers it and my BS's nurse recommended it, I'm going to do it. This way, I get professional instruction on the right exercises specifically for me and my post operative condition, without a long term commitment (other than me continuing to follow the exercise instructions for the rest of my life). I also like the idea that the PT place is for BC patients and I'll be among people who are going through the same thing as me. And who knows, maybe it will inspire me to exercise! And since I'm also worried about lymphedema, the PT will hopefully provide some instructions on helping to prevent it. Yes my arm was measured too. I was given an L-Dex test prior to surgery - its a baseline evaluation of your arm used to compare your arm after surgery to look for any lymphedema.
Fredntan: maybe you can get a prescription for physical therapy and at least get some use out of that. -
Well just came from my second pre-rads workup. They don't seem happy with this one either... No rads for me this week and they'll call next week to let me know what's next.
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Cindyl: major bummer! I'm sorry. What is the problem - something with the CT results or problems with mapping out your rads? Just curious. Hope it is something they can fix and soon! Hang in there!
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Momof3boys,
I will keep my fingers crossed that it all goes well for you! My PS seemed confident that it would be ok. He routinely waits 6 months post rads to do the exchange (assuming skin looks good). Was there any discussion among your team about NOT doing radiation? It seems that it's not a clear cut decision with early stage and negative nodes.
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Yes, there was a lot of discussion... No nodal involvement involvement, no vascular invasion, good margins, PS said "no" to rads, MO said, "no, I don't think so, but you're entitled to an opinion from a RO" so... Actually got 4 opinions. It came down to: my young age (43), the RO's said the local recurrence rate over 10 years is 15%, with rads, it would bring that down to 5%, and the fact that my tumor was just over 4 cm. They suggested that they radiate the incisional scar, which they said is the most likely place to recur, locally. So, after contemplating all during chemo, and getting all of those opinions, I decided to go ahead with the recommended 25 rads tx. As one RO put it, "you've done everything very aggressively from the beginning, I'd like to see you finish the bases"...
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Hi all,
Lots to respond to as I haven't been onn forum this week. I just took a week away from computer because I had some 'home' things to address and chemo and rads get me tired.
Anyhow, I am not a candidate for surgery. I'm being treated with chemo for the IBC. My rads were an addition after 18 months of continuous chemos to shrink the tumors on my right side lymph nodes which were giving me intolerable pain. At Cancer Treatment Centers of America patients are getting chemo and rads simultaneously, I didn't think it was unusual (but then what do I know) in the scope of things, lol.
Aa far as the tattoos: they are 3 little pin dots, can't even be seen! I had no problem with them
I really have not had any bad reactions from the chemos. They either helped or they didn't. In which case, they let me complete the cycles remaining and put me on new chemos. Because there aren't any 'sure fire' treatment options for IBC, it's always just touch and go. They really are just trying to give me the best QoL they can. I figure if I go 5 years with treatments and I'm still alive, that's my main goal at this time
Just let GOD do his work. I'll start working on the 2nd set of 5 years after that. 
In terms of my rads, I've had 7 treatments so far, the tumor in my neck which was the size of a ping pong ball, is now the size of a marble, I can move my right arm, and today I was actually able to write with my right hand very slowly. My doctor was totally amazed at that. I'm seeing great results and with 18 more rads to go I sure hope that resolves the problem which initiated the rads to begin with.
You can all join us, we are not particular of when your rads start or stop. We love to hear each of your experiences.
Hoping everyone has a great night!
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I start April 9th 6 1/2 weeks..
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Good luck with your treatments Lori.
Keep us informed of how your treatments go.
Regards and Hugs,
Carmen
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Cigi56. Mapping is giving them fits. I am a busty person (44DD) and my cancer was under my arm. So one position puts my chin in the line of fire. The next causes my breast to "fold" in a way that's not optimal ... the third which we tried today is face down. This position puts lefty in range.
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Cindyl: oh my! Well let's hope 3rd time is a charm! Good luck.
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Cathy - where are you having your RADS done? I am suppose to have mine in Yonkers across from St. Johns Hospital
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Hey I'm in baltimore going to johns hopkins .looking forward to exploring the city.
I've been to pt twice now.I know the exercizes I have to do. Just need need to apply them beyter. Starting out with 1 pound weigh ts . I did fifteen min on the eliptical day before.it was agony.pretended my MO was behind me. -
Hi Ladies ~ I'm just jumping on for the first time. I just began rads and I go in for my 3rd treatment this afternoon. I am using Emu Oil which came highly recommended by many who have gone before us, as well as pure aloe (right from the plant). I do think I'll add bag balm to the mix though, since I saw it mentioned here. I used that for years, but forgot about it till now. I'm going to do everything I can to try and go with an implant, instead of a tram flap or diep. My PS is not at all optimistic about radiated skin being able to hold in an implant, but I'd like to try anyway.
Momof3boys ~ you and I were in a similar situation with a good sized tumor, but no nodes. I am 42 and my team highly recommended the most aggressive approach possible. I think the only difference might be that my margins were not that great. They were clear, but barely. I had 5mm at the skin and only .05mm at the chest wall. Rads brings my chance of recurrance down by something like 50%.
I find rads to be more of an emotional battle than a physical one so far. Granted I'm only a couple sessions in, but it is really unnerving to lay on the table, uncovered, with my arm uncomfortably twisted up over my head. I am there, totally vulnerable and cold, and radiation beams are aimed at me...meanwhile, all the medical personnel run for cover behind a lead wall :-\
Best of luck to everyone,
SAN
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Claire ~ By the way, thanks for starting this discussion! It is fun that we are both ready to move on from our chemo thread
SAN
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I'm still waiting to find out if I will have to do RT. I had a bmx with te on Feb 1. I was told I would not need chemo or rads but about a month later the bs decided to send me for a consult because the tumor was only 2mm from my chest wall. So....I'm waiting while the ro goes over my records and films to see what he thinks.
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Gayle, I am having my rads done at white plains hospital (dickstein cancer treatment center). Is the place that you are having rads a private office? If so I then it is the rad therapy office my best friend worked in for about 12 or 13 years. Let me know the name of it.
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Cigi56 - Yes, it is a private office. The place is called 21st Century Oncology - it is at 970 North Broadway. They also have offices in Mount Kisco and on the Grand Concourse in the Bronx.
Gayle
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Gayle, yep, that's it. Just asked my friend the name of the place (it was called Riverhill Radiation Oncology when my friend worked there but changed hands to 21st). Good place. This same friend of mine does per diem rad therapy where I am having rads, and she works part time at Northern Westchester Hospital, where my BS and PS work out of, where I had my BMX and implant recon, and where I'll be doing physical therapy over next few weeks. Good luck to ya!
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Claire ~ Thanks for starting this thread. It will help us all so much to be able to compare our experiences. Thanks, too, to Sandyland for letting me know about the thread. Loved those I met, including Claire & Sandy, on the November 2011 Chemo thread and looking forward to meeting and getting to know those of you here. As usual, a club we don't want to be in, but love the sense of friendship and sharing I find on these boards.
My planning session is scheduled for April 11 and I am tentatively scheduled to start rads on April 16. I am having mine done at the same place as Sandyland. Like my rad onc a lot. She is warm and human...I truly appreciate that and her knowledge. I hope the rads go as she explained. By the way, I am going to be using a product called "MiaDerm" that was recommended by a co-worker and the onc said it's good and not greasy. I was going to use the Aquaphor and aloe vera, but the greasiness didn't seem like it would work out well with work clothes. The MiaDerm is supposed to be guaranteed to make sure you don't have to stop rads in between for skin isses. Hmmm...we shall see. I am also going to make sure I buy some corn starch, as that sounds like a good plan and cheap (for a change)! Looking forward to getting to know all of you. Linda
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Azdixie: Well, I hope you don't have to do either, but if you do, then radiation is (in my opinion), easier than chemo. I start rads on Monday so I don't have experience yet (and may be singing a different tune next week), but I did have 4 months of chemo and wish I could have avoided that treatment. I saw a thread somewhere on the BCO board where a pre-surgical poster asked others the question: "which was easier - chemo or surgery?" And the majority of answers that followed (or at least the ones I had a chance to see) were surgery, and that is my answer too. I would have another 5 surgeries before I would go through chemo again, that's for sure. Let us know what the doctor decides. Good luck!
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The miaderm is the same stuff I got today. My nurse to put it on four times day or at least three.
She said the calendra in it can really help. -
Fredntan ~ I called the company directly to order and the person I spoke with said it should be used 3 times daily. She said to call back when I receive my order and they will go over when/how to apply. If you want their phone number to do that as well, you can go on their website or feel free to PM me and I will be happy to give it to you. I ordered 2 tubes, although she said I would probably need 4 to get through the whole process of moisturizing for a week before rads and for 2 weeks after. It's not cheap, so I bought half now and see how my usage is and order more later if needed. By the way, my rad onc said the same thing about the ingredients...supposed to be very helpful. Linda
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I paid 28 $ bottle. I assume you apply some to the area getting zapped and air dry before dressing
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Linda ~ I saw Dr. Volpp yesterday, I will be seeing him once a week during rads, and he told me he will be out of town in two weeks. For that appointment I will be seeing your doc, Dr. Coleman! I'm happy that I will get to meet her and I am interested in her take on things.
Cigi56 ~ I am right there with you! I would endure multiple surgeries again, before I'd consent to even one more round of chemo. I am now 3 treatments into rads and it is much easier than chemo. Although....I am aware that the troublesome part of rads doesn't present immediately, so I might have more to say on the subject a few weeks from now
What chemo regimen did you do? I did TAC, (Taxotere/Taxol, Adriamycin, and Cytoxin) and I found it to be a brutal cocktail. I was all set with my Emu Oil and Aloe skin care plan and now you guys have me all interested in MiaDerm! Do you think it is worth adding to my mix of stuff??
SAN
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San ~ I think you will love Dr. Coleman, so real and down to earth. Since she is the head of the department, she must be pretty smart, too. I think she is right about your age. I sent you a message about the Miaderm. Got it today, isn't greasy and smells OK. My co-worker couldn't say enough good about it, so I hope it works for me as well. If you use the product throughout rads, it is supposed to be guaranteed to eliminate any breaks in treatment. I sure hope so.
To everyone ~ hope you are having a great weekend. It seems so good not to have another chemo to have to dread next week, hoping the rads aren't nearly as bad. Sounds like you guys think that's the case for sure. I had Taxotere, Carboplatin and Herceptin (x6) and it really was no fun. In fact this week, I had to have an infusion of magnesium (critically low) and still have low red blood cell count...hoping I NEVER EVER have to do chemo again! Necessary, but very tough...but we are woman and we made it! Take care...Linda
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Sandy: My chemo cocktail was ACT - same drugs as yours but I think maybe we each received them in a different order since you wrote TAC? I had 4 treatments of A and C together, then 4 Taxol treatments (every other week for 16 weeks). Thought for sure Taxol would be the harshest drug of the trio based only on the amount of time needed for the infusion (5-6 hrs for me). Instead it was the Red Devil - a/k/a Adriamycin that threw me for quite a loop (AC infusion time was 3 hours at most). And I agree, I will wait and see how radiation ultimately affects me, but I'm pretty sure i will be able to endure rads SEs for the rest of my life in comparison to chemo SEs that i endured for 4-5 months. Either way, both treatments come with pros and cons, it's just two bad that we are faced with having to undergo both treatments rather than being able to choose one or the other.
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Hi Linda, in your comment to Sandy regarding Miaderm, you say "If you use the product throughout rads, it is supposed to be guaranteed to eliminate any breaks in treatment." What do you mean by a break in treatment - does it mean treatment would have to stop due to issues/problems with the skin covering the breast? Thanks for your insight and help!
Cathy -
There's another group too called the Apr/May chemo hang out.
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Hi, I am jumping in your discussion. Just had mx for BC and my appt with rad is april 11. In a previous appt with rad he told me I would be into radiation before end of april so I am just getting info and mentally prepared.
I saw some discussion about what can be applied on the skin for relief from burning but couldn't piece it all together.
Anyone can offer recommendations?
Also, I am having my left chest and armpit (lymphnodes) radiated so looking for clothing advice. I am thinking tank top with a shelf bra and loose blouses over with dress pants for work. I still have a right breast so need something but figuring that a bra will be pretty ubcomfortable after some time.
Thoughts, suggestions?
Thanks all. Sorry we all have to be in this, but glad to have good people to share the journey with. -
Cathi ~ From what I have read and heard, sometimes (and I hope it isn't often) radiation can cause the skin to blister and the skin to open which could cause the treatment to be delayed so the skin has a chance to heal. My radiology onc did tell me that larger breasted women (that would be me) have a higher chance of skin problems during treatment. She mentioned using Aquaphor and aloe vera, but said they are greasy. When I asked her about Miaderm she said it was a good product, but not inexpensive (around $30 a tube with shipping to my address). Actually, the Miaderm was recommended to me a couple of months ago by a co-worker who said she had been really pleased when using it during her rads treatment a couple of years ago and brought me the left over to see what it was like. It is definitely a cream and smells OK. I am planning on working during rads so I don't want to have a greasy mess all over my clothes every day! As I told Sandy, I figure I can afford to pay for it since I haven't had my hair done in 5 or 6 months! LOL! By the way, there is a website for the Miaderm and the person I spoke with when I ordered it was very helpful.
Istok ~ Your wardrobe for work sounds like it will work great from what my (female) radiology onc told me. I am just hoping I can find a sports type bra that will be supportive enough. I am scheduled to start rads on April 16...and the journey continues for all of us...we can do it together!
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