After Radiation
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Gma thanks for the info sorry I missed the pocket party but glad he is giving you a reprive. Do you remember what the name of the med is would love to google it.
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Sherry he wouldn't give me a name of it but he keeps up with all the new things... wish I could get more out of him but he wouldn't give me any (edit) more information yet...
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Faslodex I think is the injection he was talking about.... but could be wrong.
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GmaFoley - Yet again you're sharing inside information I'm not hearing anyplace else. Thanks!!!
I've still got the "what to eat during radiation" list you shared back in April/May. That was so helpful for me. None of the doctors I see gave me any of that type of information. I saw my ONC last week with no hint of any break-throughs on the horizon.
Enjoy your extended AI-vacation and take care. Gabby
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Gma--Is that new med.some kinda well kept secret?
I dint have to do chemo but what about those who did?????
And need the shot?
I hate the white coats.they all have tunnel vision.DUH!!!!!
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awwww Granny, thank you! Work has just been crazy stress - not busy stress, just nuts stress, and I'm jumping back in with two feet with my music ministry. I didn't know how much I missed it. I'm having lots of neuropathy issues with fingers and such, so the guitar is hurting just a bit, not to mention having to dangle my rt arm over it, and mush the bad boob....but it feels so good to play again.
My trigaminial nerve is acting up again too. I started back on my gabapentin last week. Oh, could that be stressed related......? I bet.
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Gina, Nice to hear from you! - I asked my Pain Management doc when I could get off the gabapentin - He told me at least 2 years because it will take my breast at least that long to heal from the radiation and surgeries... I kinda was in shock but at least I know to go with the flow and remind myself the healing process isn't instant like I wish it was... I think that is why my ONC told me he didn't want to add an AI on top of all the other issues... Guess that means I just have to watch it and trust God to keep the cancer away... BTW the Pain doc just upped my gabapentin another 300mg a day... almost at a "normal" dose LOL - i'm taking 300mg 4x/day- sometimes I wish I wasn't so sensitive to drugs...
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Grammie~ my family doc dosed me at 300 mg, three times a day.....I can't function with that, so we agreed on 300 mg at bedtime (or she'd write me 100 mg three times a day) I hadn't taken it since the last facial nerve pain episode....with my friend having brain cancer now....makes me wonder too.
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Hey sisters...
Just wanted to to tell you that I loves ya and that I'm thinking about you all...sending prayers your way too...
Been doing bootcamp since January 3rd...I've gone 32 times out of 38, so that's not too bad, right? I have muscles in places I didn't think existed! It's craziness! But, I feel stronger and I love that feeling....
I wear my compression sleeve for all exercizing..and things seem to be under control...although I am still doing manual massages when I feel I have to...
Had a bugger of a cold last couple of weeks...passing it back and forth betweeen my nephews and me...finally got it under control...Whew!
GmaFoley---sounds like your onc is up to date on all new things...keep us in the loop on the shot....sounds intriguing....
Grannydukes--hows that's new grandbaby doing?
Where has Chevy been?
Income taxes...ugh! Gotta get our stuff off to the accountant soon! I pray we don't owe the government!
Weather has been outstanding here...can't believe it's February and beautiful...I fear that it may bite us in the butt later though....I hope not!
Have a great nite all...
Tori
P.S. Woo Hoo! Post 1000!!!!
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Hi Tori! Wow, boot camp! I can't even bend over to put boots on!!!!!!!!!!
It was 89 degrees here....what a crazy winter.
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Tori---good to hear from you...as always you are missed.
Real proud of you doin the boot camp.
We came a long way sista.Tori and I started this ugly journey together.Chevy also but she doesnt post her as she finished rads years ago.she only come on her if she is lookin to start some kind of trouble here..like calling me kantalope!!!!she gave me that name when I sign off K.love her.
This weather all over is crazy.Enjoy it everyone...March is still comin.you never know what to expect then.even April could be crappy...lets hope we escape.
huggggggggggs to all my after rads sistas.K
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Venting... Sorry I just needed to tell someone...I got a letter from radiology doc that I needed to come in for a recheck... WHY??? I go in there he asks how I am doing.. I tell him... He says, "well, it might take a little time to heal, you are fine." and sends me home with an ice pack. I made the appt but He wasn't the one the gave me lidocaine cream or the anti-inflamatory cream for the radiation damage.... I feel like it is just something they need to do... but don't really care..
I need you all in my pocket again Today to hold me back, so I don't deck this doc... He was the one awhile ago that told the nurse (without even looking at my breast) that I had contact dermitis(which I didn't have), give me an icepack and send me home.
My thought is to tell him about the creams, ask him why he didn't mention them and hope that he uses my information so someone else doesn't have to go through what I went through.
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gmafoley I'll be with you and you should tell him
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gmafoley, I agree with Sherryc. You have every right to speak your mind and you will probably help the women who come after you.
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GMA - OMG! That sounds like the moron I had for a MO. He would not let me use any creams until I got a topical infection and then it was only aquaphor - heck he gave me enough sample tubes to last a very long time. By this time I had like 2 weeks left - sorry damage had already been done by this point. Let's take him over to the bonfire and throw his ass in.
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Gma--you need to change your dr.either that or chop off his head...they just dont give a shit and it really pisses me off...There are some very good drs.UNFORTUNATELY you and JO and me with the first ass hole did not get lucky....
I wish you the very best.im in your pocket.move over JO...
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Thanks! I didn't chop his head off... I told him about my wonderful pain management doc and his giving me some anti inflamatory cream.... Radiology onc actually looked at my breast and mammogram then said, "Wow your breast is swollen!" NO SH>>>>> Murdock! Then says that I could use that anti inflammatory cream that the other doc gave me on it to see if the swelling goes down... smiles at me and walks out of the room and leaves the PA in there to give me a lecture on why I need a colonoscopy at MY AGE (I do need to do that but)..... What, they ruin my top half now they want to go for the other end... NOT!!!! - I'm just glad they released me for another year... I would change if there was one to change to... not in this town i'm in.. just hope there is no recurrence or I will have to move.
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Gmafoley--do you see a Medical Oncologist at all. I was released from my RO after my 3 month follow up. He felt that as long as I was doing my follow ups with my MO I had no need to come back to him unless I had a problem. So the problems that I have had I have addressed with my MO and he has taken care of everything for me.
So I am having a bit of a pitty party this morning. After three lumpectomies, and rads I am so lopsided. I put on a shirt today and it hangs funny. DH was trying to make me feel better about it but it makes me self conscience. Stuffing my bra does not help because the radiated boob has lifted higher and that is part of the problem. I am one month away from BMX so I know that my PS will rebuilt them to look beautiful.
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Sherry - I do know the feeling. There are tops I will not wear at this point either. (((HUGS)))
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JO I so wish I had known all this in the beginning. (((HUGS)))) back at ya.
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Sherry - I can only where the tank top shelf bras inside out at the moment and I'm not having any reconstruction.. they just took the front third of my breast (around the nipple). I can't wear nice T-shirts any more - they look funny over the tank, so I am now trying to find nice blouse at the second hand store because there are none in the stores in town..
I have an MO but being I didn't have chemo we don't see eachother much. He is actually giving me a 6 month break before we talk about AI's again.. I see my pain management doc every 6 weeks until we get the meds where I am more comfortable.. Radiology Onc said to go to my Primary if I had any issues.. I feel like they dumped me out on the street with no where to go... Pity Party time... I have sinus headache this morning, so kinda depressed and mad all at the same time... I will be better tomorrow - Thanks for all your ideas and being in my pocket... Better get back to work... Love you Ladies!!!
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Gma Foley----swollen breast is a problem that no one has addressed here.I too had it and i had to go for PT and wear a compression bra...I had edema.I strongly suggest you get on the I HATE LE...and speak to either Binney or Kara about it.This is no joke and should not be overlooked especially with your DRs track record.Please check it out.
huggggggggggs to everyone K
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Wow gone a week from reading the threads and so much GREAT information. Also hoping everyone is doing well too.
Now this I've GOT to share! (I just wrote a good friend here about this and want to paste a few bits of part of my letter to her as I thought it might be good info here too.)
Went to wonderful appt. yesterday -my first- with my new physical therapist. WOW! If you haven't done this, go straight to the phone now and get an appt.
NO doctor advised or recommended/suggested this, but a RO nurse slipped me a card with the name of the right (ask for a breast/lymphodema specialist-even if you don't have lymphodema) person to ask for. And I had to "request" this on my own (Why do they expect you to ask for the drugs you need or the specialists you need on your own?) and the wait list put me 2-1/2 months after rads! ($$%**(#@)
Anyway, it was the most healing thing I have done yet.I had massage and help and light (cold lazor) therapy over the scar and silicone patch over it and IN ONE SESSION, I got so MUCH relief, my inside scar reduced, and she had me flexing and able to reach a HUGE amount more (from the tightened area). I slept better last night. I am so impressed. WOW. And she really really got what I have been through, my exhaustion, my weakness. And she, although she is a physical therapist, treated the whole person. We spoke about art and dreams and family and what makes life LIFE! I felt like I was with my personal angel. She said: she WILL make me better -all the way better. NO Problemo. Wow, now that's what I needed - someone thinking "well" and "completely healed" at me with full confidence.(Have I used WOW enough?)
She added in 2 small (I really appreciate small increments as they can so much easier and effectively be incorporated) exercises to my regime and one creative one. And, I love this too, her conditions for working with me are we have to be honest. Isn't THAT refreshing! Including if I didn't do an exercises to admit it and to tell her how I am feeling.
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trubff--I so agree that PT works so well for us after rads. I did not go to a LE specialist but to a female PT that would work with breast cancer patients. I did not start until 8 months after rads and I was in so much pain. If I had known what they could do for me I would have gone right away. I just don't understand why the Dr's do not recommend going at least for an eval after rads is finishes. Took me three months to get better in PT. My therapist said if I had come sooner I probably would have only needed 6 weeks.
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I so agree, Sherryc. I just started at 2-1/2 months out from rads and my PT angel thinks 6 weeks.
And here I was trying to live with the pain and tightness.
LADIES: PT can really really make a difference in your LIFE after radiation!
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why dont our stupid drs.tell it to us.Damn i love my BS but when i mentioned to her my breast was swollen she didnt say anything.I asked her for the PT.
i swear they all have tunnel vision...thanks to the sistas for all that info.
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truebff, SherryC, and grannydukes, I could not agree more about PT. I have mild LE in my left arm. Other than making it difficult to wear my watch, it did not bother me until I developed tendonitis in my wrist. My PCP thought the LE could be aggravating the tendonitis and she suggested that I see an LE specialist. I saw the PT for the first time on Friday and I suddenly felt like the missing piece of the puzzle had finally been put into place. Besides the physical aspect, she listened and validated my feelings. I wish every BS, MO, and RO did an LE evaluation as part of their treatment without us having to mention it to them first.
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truebff, SherryC, and grannydukes, I could not agree more about PT. I have mild LE in my left arm. Other than making it difficult to wear my watch, it did not bother me until I developed tendonitis in my wrist. My PCP thought the LE could be aggravating the tendonitis and she suggested that I see an LE specialist. I saw the PT for the first time on Friday and I suddenly felt like the missing piece of the puzzle had finally been put into place. Besides the physical aspect, she listened and validated my feelings. I wish every BS, MO, and RO did an LE evaluation as part of their treatment without us having to mention it to them first.
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Oh I just remembered my RO did notice the edema as soon as I took off my bra.i was in PT by then.Everyone else just blew me off....mild edema.When I went on the I HATE LE thread and told the sistas there i had mild edema you know what one sista told me quote: having mild edema is like being a little bit pregnant.
Its a shame we have to be our own drs.Thanks again BCO...I dont know where i would be without you..huggggs everyone K
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So exactly how long does it take to heal from radiation?? I finished 7 months ago and I still tighten up and feel like I'm burned regularly. I've been doing PT since October and just got another 24 visits approved. My skin is getting pinker in certain areas. I just went to the BS to check that out and she says it is from RADS annihilating (my word... but the essence of what she said) my tissue. I have little red lines that look like spider veins all over the place. I did have TE with expansion after RADs. Could this be the problem or is this normal for RADS?
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