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Radiation recovery

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Comments

  • VickieHall777
    VickieHall777 Member Posts: 33
    edited February 2014

    MinusTwo,

    I hope I can encourage you a bit.  You have already gotten all of the good advice about side effects so I will share about the implant question. I had bilateral BMX with immediate gel implants. Small margins were found in pathology so I had to do rads when I did not think I would. That was an emotional roller coaster in itself, but after 28 treatments I am now more than a year out and my implant is fine. The only issue is thicker skin and I do have trunkle lymphedema. I have a wonderful LE therapist and all is under control.

    For those who are dealing with lasting pain, I am happy to share that I am finding great relief for neuropathic pain in the topical cream that I can make as a compounding technician in the pharmacy where I work. These creams can be personalized for your individual needs. I am happy to share details if anyone would like. I will caution to be very careful as there are some people out there who want to defraud insurance companies by overdoing the ingredients, so check out reputable compounding pharmacies and beware of pre-printed prescriptions that tell you to use lots of cream. A thin layer is all you need and for me once or twice a day does the trick.

    I am praying for each of you wonderful ladies.

    Vickie

  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2014

    Wow Josie your sister in law has let me be nice and say a "weird" sense of humor. Sounds like she likes to push your buttons. Okay already going to say this not because I do it because usually I don't, but ignore her if you can. I don't see my sisters in laws that often thankfully. I can only take them in small doses for the obvious sake of my brothers. I am really close to one brother and not so much the other. One sister in law you definitely DONT tell anything to unless you want it broadcast all over town. She is the consummate town crier trust me. She thinks because she tells everything about her personal life that yours should be told as well. The other one is really sweet but spoiled and we have locked horns over her criticizing my brother unnecessarily. No one is perfect but she can be such a baby...All the sisters in laws are close; I am close to my sister but she lives in another state. I think if I had to deal with one like yours I might have to have some kind of elective surgery like wiring my mouth shut. What does hubby say about her? Not much because she is the boss?

  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2014

    Josie - bless your heart all this waiting. Don't you just love it; they are scurrying around and you are in major anxiety mode. Is it asking too much for him to take a few minutes to call you; come on. I remember many years ago when my father, who was hardly ever sick, was waiting on a call from his doctor about a possible cancer DX. He was faithfully sitting by the phone so when I called him he told me he was waiting on the call which was supposed to be made hours and hours before so he had to let me go. I immediately called the doctor and let him have it. He had the results and was not in surgery. I then asked him how he would feel if that was his father waiting for the call. He apologized and called my dad. My doctors already probably think I am their worst nightmare because if they tell me they will call a certain day they can bank it I will be calling them if they don't. I hate they have such power; I know there are times when it cant be helped but for me its almost cruel to leave someone hanging. Do let us know. Praying for you. Diane

  • joan811
    joan811 Member Posts: 1,981
    edited February 2014


    Checking in....very busy work week.  Little time, and lots of dozing off at night.
    Will read back later....am at work.
    I see some new "faces"...look forward to reading.

  • gigil
    gigil Member Posts: 916
    edited February 2014

    Still waiting to hear from Josie.  Kate, hope things are better for you.  Not sunny here today, and very nice and cool.  Hope everyone is having a good day.  

  • minustwo
    minustwo Member Posts: 13,343
    edited February 2014

    Vickie - thanks for the implant experience.  I had some truncal LE on the left side from the original BMX.  Hope I don't get more on the Right but I wouldn't be surprised.  ALND in Sept. took the level 1 lymph nodes and rads is targeting level 2 and level 3.

    Yes, I'd like the formula for the neuropathy cream.  I was "lucky" to get that too.  Please feel free to PM if you'd rather send directly.

  • katehudson25
    katehudson25 Member Posts: 1,939
    edited February 2014

    Bunkie, Brookside, runfree, wyo, Josie and edwards thanks so much fir the support

    Bunkie I am sorry that you are tired, and I am sending sunshine your way

    Brookside at this point none if my dictors are talking about rehab. I do refer to Natale as a lympn massagist, but her actual title is physical therapist

    Josie I can't believe these people aremaking you wait again

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited February 2014


    Was today a lymph massage day, Kate, and are you feeling a bit better?

  • minustwo
    minustwo Member Posts: 13,343
    edited February 2014

    Talked to RO today about lingering effects.  She said most of the skin problems would taper off around two weeks after completion.

    As for implants - she said there will continue to be changes to tissue, muscle, etc., but that I could expect most of the settling to be done after 2 years.  And reminded me to be sure to do the stretching exercises at least once every day - forever.

  • MostlySew
    MostlySew Member Posts: 1,311
    edited February 2014

    minus two, I'm so very sorry you're going thru treatment again but I'm glad you found us.  We're all routing for you.  I'm glad you talked with the RO today and got some things settled.  I can't really help with questions about your implants as I only had a lumpectomy and no augmentation although my surgeon decreased that breast size by at least 2 cup sizes ( we were trying to get rid of some of the density in my breast).  Anyway, I'm now 2 1/4 years out of rads, and i can attest to the fact that your breast will change for 2 years after rads.  Mine will still stiffen up and I will get a bit of cording under my arms if I don't remember to stretch out.  I don't have to do it daily, but a couple of times a week.  And yes, the skin is still changing but not drastically.  I'm hoping you'll have no problems like Vicky, but as another option to explore, my surgeon up here ( Santa Rosa ca area) does a new procedure that has been used in Europe for years but not over here.  It's  for breast argumentation after lumpectomy and rads.  He's still primarily a surgical oncologist specializing in breast cancer, but he now has added this new technique.  Apparently he uses your own tissue like with lipo suction to put into the breast or something like that.  He offered to do it on me at the 2 year after rads mark since he had removed so much tissue.  I'm not having it done as I like this smaller breast...but I thought I'd mention it just so you'd know that apparently there are some newer techniques that are being used after rads.  If you're interested you can pm me and I'll give you the office number so you could bet more info.  But let's just hope your implant behaves itself and you don't have a problem.   My only other recommendation would be to moisturize all you can, but you already know this from your first time around.  Hope this was somewhat helpful

  • minustwo
    minustwo Member Posts: 13,343
    edited February 2014

    Thanks MostlySew.  Good information.  While it's a BC recurrence, I didn't have radiation (or chemo) the first time so this last year has been a learning curve.  I'll keep the thought of your doc's new procedure in the back of my mind.

  • josie123
    josie123 Member Posts: 1,749
    edited February 2014

    Well surprise... No phone call again today .I was too busy and tired to worry too much about it.I was up late last night with my youngest.I'm not going to go into details but she did stay home today and now also has stomach flu.

  • MostlySew
    MostlySew Member Posts: 1,311
    edited February 2014

    minus Two, I realized after writing that that you didn't have rads the first time....so, I'm adding my regular mantra like the others....moisturize.  Lots.  Often.  Immediately after the rads and before dressing.  Most of us recommend aloe Vera pure gel...it's a wonderful cooling gel and has healing qualities.  When I started showing signs of burning I switched to calendula cream which you can order from amazon it's made by Boiron and is wonderful.  And, no underarm shaving and I'd recommend you change deodorants to something without aluminum or PABA (?) like Toms of Maine which is a natural one.  Out here they also recommend using dove unscented soap for bathing.  I've come to love that soap.  No underwire bras, of course, and lots of water.  So I know 6 1/2 weeks feels like a very long time, but it will pass faster than you can imagine.  Get in some exercise, gentle or whatever you can handle daily as it will help with fatigue and general well being.  So...that's my long lecture..... Good luck, and we're here to help.

    Josie...what's with those people?  Tomorrow when you call ask for the office manager or someone who can rattle this doctors cage.  It's time for you to start causing a ruckus. I expect you're probably fine and that's why the doc hasn't called...but that's not an excuse.  You aren't going to feel fine until you've heard.  So.....go get 'em girl......and try to get some rest tonight

  • SAB
    SAB Member Posts: 1,121
    edited February 2014

    Josie, adding my support to Sew's advice.  Be heard!

    Minus 2 I'm still stretching each evening after 2 1/2 years…just routine.  It helps.

    Joan--hi there!  I'm in the spring swing at school too.  Very busy.  Maybe Run is too--hven't seen a post for a bit.  (I've been lurking, no energy to pop in.)

    Kate, mostly I wanted to say hi to you and tell you that I have a friend who works at a rehab and that lovely ladies go in and come out all the time.  Maybe you should look at the place they would recommend to see what kind of vibe it has.  You'll know right away if it is a possibility for you.  I just feel terrible that you're suffering so much.

    Hey there Sew--I started using crystal essence, it works pretty well.  Just have to run around in the morning flapping like a bird trying to dry my deodorant so I can get dressed!  The silliness of it all.

    We're on generator with the storms so I'm popping back out.  Hugs to all.

  • gigil
    gigil Member Posts: 916
    edited February 2014

    Can't believe I am popping in to see if Josie has heard anything, and. I am appalled they haven't called you!  I agree with  SEW  and SAB , time to be heard!

    Kate you are always in my thoughts and prayers.

  • wyo
    wyo Member Posts: 165
    edited February 2014

    josie- its me our token nurse- I am a firm believer that no news is not good news- its just no news and that is unacceptable  but it sounds like today was a bad day for other reasons.  

    You made several requests to the office staff and they knew you were awaiting this information pretty anxiously- in the am simply call and when they say they will "tell them" "leave messages" or send smoke signals- say I am sorry thats not acceptable and I don't trust you to call me back. I can call back every 30mins or I can hold for the doctor and I want a copy of my report today please. 

    last but not least- I think there might have been a tiny part of you that thought after whatever is going on with your daughter you just could not deal with your own health situation or one more thing today. Just wanting you to know that sometimes we feel that way but its important you don't "back burner" yourself with everything going on.  hope I didn't overstep

  • gemini4
    gemini4 Member Posts: 320
    edited February 2014

    Wyo, I know you're a nurse, but you make a good therapist, too.  ;-)

    Seriously, your advice is always sage and spot-on. :-)

  • josie123
    josie123 Member Posts: 1,749
    edited February 2014

    OK, so I just heard from the nurse.She did apologize first of all.So my CA125 was 10  normal is under 21.The left ovary there is a 1.8 cm cyst likely representing a partially collapsed Hemorrhagic cyst.He thinks with my hormone levels I am not Menopausal.My ovaries are still functioning and he wants them to cycle 2 more cycles and then repeat the ultrasound around the end of April.This time I've already got my appointment with him for the interpretation.

    Thanks everyone for all your concern and support.My hubby has the stomach flu now too so Ive been busy cleaning and doing laundry.

    I'm glad the results aren't bad.I was really scared.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2014

    Hi y'all 

    Josie - yippee! Thought we were going to jump out of your pickets and give that dr a good talk about courtesy and patient care...geeez   Fingers&toes crossed for Aprils results. Go away flu bug...you can do stress cleaning at my house...I'm with Brookside stress ice cream yum!

    Kate - hope you are doing better.  Did you decide to go to rehab for pampered care...you deserve the best! Working on the swelling and dreaming about your glam haute couture for the red carpet...you will be dazzling:)

    GiGil - ah, smiles, relaxed, sunshine...great pic:)

    Spring Break full on press!  Thinking of our scholars...Joan, SAB, RunFree summers coming can you see above the papers?

    Minus2 - stretching helps, breaks up the scar tissue, improves circulation & brings smile...yoga:) vit e on scar and rad skin.

    Bunkie, Sew, Brookside, Wyo, Gemini, Edwards, new2bc, shout out to all

    Hubby has more scans tomorrow than hopefully next week the mystery groin swelling resolved...surgeon here is adamant not hernia...TX said operate immediately...so we will see. Headed to yoga...breathe:D

    For you outdoors girls, check out Casting for Recovery and consider putting in application to attend a retreat in your state:)  I'm going in April...hope I get it than will surprise my dad with a fly fishing outing this summer...more relaxing than him creaming me on the tennis courts.

    (((Hugs)))

    Cindy

  • brooksidevt
    brooksidevt Member Posts: 1,432
    edited February 2014


    Josie, so happy you finally got your results and your stress level is now delightfully ho hum.  .  Also, it's nice that there will be a followup so you can be absolutely sure it's no big deal.  I'm impressed by your brilliance in scheduling your results appointment.  Brava!

    So Cindy, your husband's swelling just turned mysterious?  I sure hope it turns out to be something just as  benign as the hernia that it apparently ain't.  Meanwhile, I'm sure you're a wreck.  Gosh.  Breathe in and out with beautiful zen yoga thoughts, then come here and rant.    Are you staying at one of your houses, or doing the hotel thing?

    One of my former neighbors absolutely loved her Casting for Recovery retreat a few years back.  Her onc arranged the event just for his patients.  Ahhhh.  If only they'd all do that!

  • wyo
    wyo Member Posts: 165
    edited February 2014

    hi all

    Josie- thank goodness!! glad all looks well and they will keep a careful watch. 

    sitting in the airport in Salt Lake City trying to get to montana to visit son#3/dil and most wonderful grandchild.  ugh delay and its raining here and snowing there so we shall see. 

    I have my compression cami on thank goodness and I have 12k steps in and am keeping hydrated- hope to make it by midnight.  

    Kate hope all is well and pain somewhat under control

    Cindy- if its not a hernia what is it pray tell? 

    everyone stay warm and safe that is getting the cold and storms

  • edwards750
    edwards750 Member Posts: 1,568
    edited February 2014

    That's great Josie...whew I know you are so relieved. Now you can just play nursemaid to your ailing family...yuk...stomach flu. One of my brothers used to get it so bad he had to go to the ER. Phenegran(sp) usually works for us. One of sisters in law is a RN so she has all kinds of meds. Son just got over something similar. He was down for the count. Hope the family feels better soon so you can veg out. Diane

  • minustwo
    minustwo Member Posts: 13,343
    edited February 2014

    Thanks again everyone for your welcome & advice.  I plan to hang around & hope to get to know you.  For now - glad to hear Josie finally got results but sorry about the flu, and sorry to hear about Cindy's husband.

    Cindy:  Where is the Casting for Recovery location in TX?  That would certainly satisfy my "thirst" to see moving water.  As soon as I finish treatment I plan to get myself to an ocean, lake, river, etc. and just watch the water & heal my spirit.  Oh - and a sprinkler doesn't count!!

  • RunFree16
    RunFree16 Member Posts: 649
    edited February 2014

    Josie, big PHEW on the results!  I can't stand how long you had to wait, though.  Hope your family gets over their stomach yuck.  Wyo, I hope you've made it to Montana.  What a mess.  

    Kate, thinking of you--hoping you are doing better with help from your visiting magic-finger lady.

    Cindy, good luck to your husband and you.  No picnic at all.

    MinusTwo, ditto on the aloe.  I did well with that during rads last spring.  My MO says to lubricate the radiated area indefinitely post-rads, and that's easy enough to do--I just slap on the same moisturizer as I use on my face, nothing special.  You sure have been through a lot.  I hope rads goes easy on you as it did on me.

    Yes SAB, I too am lurking but not posting much.  The semester is flying at me like a squadron of fighter jets.  Next week will be extra hard because I'm at the hospital all day Wednesday for one-year tests, which means I have to double-up on my prep this weekend.  I'm glad to be going, though, because I want the PT to take a look at my arm--cording and aching.  I'm interested to see that several of you have stretching that you do routinely.  I need to have exercises boiled down to a super-simple routine, and I need to know exactly where they will fit in my day or they just don't happen.

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2014

    Thanks y'all

    CA surgeon performed 3 hernias & gallbladder and has worked around the neo bladder, TX Drs don't know his belly...complex mess of scars.  CT late tomorrow than hope answers...all pelvic lymph nodes removed with bladder so not sure what, hope just a pulled muscle...hubby's in panic another cancer...next week hurry up.  

    Walk today to yoga...orange citrus blossoms overwhelmed my senses...have a few chores to do around the house so keeping busy.  But not crazy like Josie :)  finish painting. 

    Go to website Casting for Recovery...for TX it is offered 2X a year spring in Borne and fall in Glen Rose.  Great website over 30 states offer...very cool :) I'm a water girl sailing, surfing, kayaking, swimming, need water time...so I can see me standing in gentle stream, soft breeze casting...just no snakes, gators, or bears.

    Wyo good luck on your flight ... Enjoy family time:)

    (((Hugs)))

    Cindy

  • rmlulu
    rmlulu Member Posts: 1,501
    edited February 2014

    Brookside - CFR is offered in VT.  Just apply than wait it is a lottery...Stowe VT:)

    RunFree - my routine is about 30-60 min and I alternate, but late afternoon gym is empty...walk morning but you run...

  • josie123
    josie123 Member Posts: 1,749
    edited February 2014

    Thanks everyone again for the well wishes on the results.So glad to have so much support.

    My DD turned 11 today.Too bad she had to stay home with the flu bug.I'm too tired to individual my address everyone.Had to clean top to bottom today and wait on the sick ones.Goodnight all.

  • joan811
    joan811 Member Posts: 1,981
    edited February 2014

    Hi all, am heading off to sleep land in a few...got a road trip and early call.  (heck, may as well stay up)

    I have been reading...just been crashing before I can reply.

    Josie, I am glad to hear that report, finally.  I don't even like the cyst idea...but it sounds like it will turn out well.  You have had quite a time with everyone sick and your worrying. 
    HBday DD!

    Cindy, I can smell the orange blossoms...sometimes, when all is in chaos, I breathe in nature with all my senses.  I hope you can find peace in those moments in your day.  Hugs and positive thoughts and prayers for you and DH. I hope there is an answer soon.

    Kate, so sad that you are uncomfortable...I am sending the same hugs, positive thoughts and prayers your way too.  I know you will do what you have to do to get through this.

    I will catch up tomorrow with a little free time during the day --- then will be spending the week endd with my very active GSs (9, 5).  I mean, VERY active.  DH is grouchy already...I am excited.  We didn't see them for Christmas so I have lots of surprises for them.

    No spring break for me - it is the week of 3/17 here but I have work.  I have put in for a few days off...approved!

    Hugs all around....

  • gigil
    gigil Member Posts: 916
    edited February 2014

    Josie, glad to hear there is likely nothing worrisome going on with you.  Sorry about your sick family.  That is never any fun.  Happy Birthday to your DD.  11 is such a fun age.

    Wyo, hope you reached your destination.  What a winter it has been.

    Cindy, your husband and you too, of course have been through too many health challenges lately.  I hope life settles down so you can enjoy some travel.   Meanwhile I can imagine the scent of those orange blossoms.

    Joan, glad you get to enjoy some Grandma time, and hopefully a little time off.

    DH is due back here in two days.  He will need a rest.  He has had some tragic cases to work with this week.  Meanwhile my DS and my BIL keep me good company.  We have had some clouds and rain, but not complaining.

  • april485
    april485 Member Posts: 1,983
    edited February 2014

    Yay Josie!

    Cindy, thoughts and prayers for hubby!

    We are in a deep freeze here in CT again (8 degrees on my way to work this morning...brrrrrr!) so trying hard to think spring!

    Kate, hoping you have a better day today.

    To all of you, hugs and have a great day!

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