December 2009 Rads Group

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  • somanywomen
    somanywomen Member Posts: 872
    edited April 2010

    Bonnie, I have been sore since day one....I still only sleep on my right side because of soreness..Every since I saw the clump of surgical clips left at sn area, I do believe that is the source of the worst of my irritation..I finally gave my house a good cleaning (had company over) and boy did I hurt ever so much the next day, so I think when we over do it, it brings on more pain...My soreness is much more noticable at night...

    adrienne, Spring if Fl has been beautiful and I feel the best when outside...I completely forget about bc while doing my beach walks.....The manatees are back in my canal and other wildlife so I have taken some awesome photos..

    To all...hope you don't get tired of my research that I find and want to share...

    Tip of the day.......Many suppplements do not contain the quantities of molecules that you find in whole foods......exp..."Resveratrol" was studied and the amount of resveratrol in capsules was so small that a person would have to consume thousands of them to ingest the equivalent of the resveratrol contained in a single glass of wine....So I guess it's back to the bottle for me!!!!

  • adrienne2
    adrienne2 Member Posts: 183
    edited April 2010

    Jewly, don't forget that drinking as little as a glass of wine a day increases the risk of breast cancer. You can also get resveratrol in grape juice, without the risk:

    http://www.thehealthierlife.co.uk/natural-health-articles/nutrition/grape-juice-red-wine-12098.html

    adrienne 

  • somanywomen
    somanywomen Member Posts: 872
    edited April 2010
    adrienne, actually when I do drink wine I dilute it with Organic Concord (has most amount resveratrol) Grape Juice with 1/3 wine 2/3 grape juice....Most nights or during the day, I just have the juice, no wine....or I would be looped all the time....which might be fun, but I couldn't deal with the hangovers......I even take the grape juice in a flask and add to my wine when we go out....that's a reverse, huh?
  • BonnieSF
    BonnieSF Member Posts: 101
    edited April 2010

    Adrienne: Thanks for your observation that Spring is a great time to be healing. Love that!

    Jewly: Keep the tips coming!

    Update: The swelling and pain got pretty bad, and yesterday was seen by the rad onc. Was prepared to strangle him if  he said "That's to be expected" like he did so many times in the past. But no. He thinks it's an infection, so now I'm on antibibotics and today I'm getting an ultrasound to try to see what's in there. After one day on the antibiotic I am already feeling better, so that's probably it. Had a fever too. Poor me! I keep reminding myself! Wonder where that infection came from?

    He mentioned a whacky thing called "radiation recall" which is like a crazy bodily flashback of radiation side effects. It is rare and usually triggered by a new medication. He doesn't think that is what I have, but I thought I'd share it with you. Ever hear of this?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

    I've finished with chemo Oct 6th. and its been over a month that I finished rads. Now I am experiencing a very dry mouth - very little saliva. I talked to the radiologist and she has no idea. Either does the surgeon who took out my thyroid. I am still waiting to hear from the chemo doc. Has anyone else experienced this?

  • somanywomen
    somanywomen Member Posts: 872
    edited April 2010

    Veggy, these docs always play dumb...I found this info for you on net....hope this helps....

    Dry mouth comes about when the salivary glands don't work properly. It is a common side effect of many medicines, including those for high blood pressure and depression. Long-lasting mouth dryness may also be the result of head and neck radiation treatments, chemotherapy, nerve damage, stress, or diseases such as thyroid disease, diabetes, AIDS, Parkinson's disease and autoimmune conditions such as Sjögren's (pronounced "show-grens") Syndrome, a disorder in which the person's own immune system targets moisture-producing glands and causes dryness in the mouth and eyes. Contrary to popular belief, dry mouth is not a normal part of aging.

    There is currently no cure for severe salivary gland damage.
    In the meantime, certain treatments may help some people with dry mouth. Dr. Baum advises chewing sugarless gum or candy and drinking lots of fluid to keep your mouth moist.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

     Thanks for looking that up for me. I started looking it up but always get side tracked. 

    Let's see...

    I am on high blood pressure meds, depression meds, I've had chemo, thyroid disease, and stress. Another one I found was sinus problems. Hmmmm... I wonder which one started it? I have been drinking lots of water with lemon in it.

    By the way, the chemo doc said no. 

  • adrienne2
    adrienne2 Member Posts: 183
    edited April 2010

    Bonnie, I am so sorry that you are having pain and swelling. Just when you thought you were done with all this. Thank goodness the antibiotics are working.

    Yeah, I've read a little about "radiation recall." I hope none of us ever experiences it.  

    Veggy, I hope your salivary glands start doing their job again. 

    adrienne 

  • BonnieSF
    BonnieSF Member Posts: 101
    edited April 2010

    Update: Today had ultrasound and a large area of fluid retention was obvious. It was drained and contained a bloody, cloudy mixture. The dr expected it to be clear. It must be infection because I have been feeling better on the antibiotics and the fever is down. Hopefully analysis of this fluid will clear things up.

    Veggy: Good luck wtih your salivary glands. I recall hearing about some OTC product you can get for dry mouth. Have you heard of that?

    Bonnie

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

    The nurse at my doctor's mentioned that but she did not say what it is. I think tonight I will take some nitequil and see if that helps the sinuses. It gets fustrating at night when I wake up and my lips are stuck to my teeth.

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited April 2010

    Veggy the product for dry mouth is called biotene and you can buy it over the counter.  I hear it doesn't taste very good but they say it does work.  Good luck. 

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited April 2010

    Oh FYI... I have started having terrible problems with pain in my knees and lower legs the last couple of weeks.  I am really having a hard time sleeping at night to.  I am on my 3rd bottle of Tamoxifen so I'm guessing this is what is causing it.  It started with creaky knees which weren't painful, but now it's really gotten unbearable.  I hurt so bad at night that I almost cry.  It seems a lot worse when it's going to rain or storm. I do o.k. when the weather is warmer and there is no rain in the forecast. Are any of you having any problems like this with your oral meds?  Bonnie I know you did and have stopped the Tamoxifen.  I am trying to hang in there taking mine, but honestly I am only taking 10mg one time a day so there is no chance the doctor can lower my dose.  What to do??

    Renee

  • somanywomen
    somanywomen Member Posts: 872
    edited April 2010

    And so it continues...........Seems we all are having so many different se's, we go three steps forward and two steps back!!....Does anyone just heal and continue to take thier meds and go on....We all seem to have a variety of aches and pains, although we basically had similar dx and treatment....Bonnie w/infection, Veggy w/ongoing se's, Renee w/painful legs, Me with soreness on whole left side.....Adrienne seems to be doing great, so I guess we can deduct that 1 in 5 comes out of rads with flying colors...........Hoping more time is the answer for the healing of the rest of us......

    TIP OF THE DAY.......White Tea has more health benefits than green tea, add lemon to your tea and benefits go up 10x.....................

  • adrienne2
    adrienne2 Member Posts: 183
    edited April 2010

    Bonnie, please keep us updated on your lab results. I'm surely glad that you are feeling better so soon.

    Renee, so sorry to hear about your knee and leg pain. Ouch, ouch, ouch. I find anything that interferes with sleep to be nearly unbearable, too. Have you talked with your doctor about this? Would an electric blanket or some other way to keep your legs warm help? Maybe a warm bath? I'm sending you a virtual hug, for sure.

    You asked if anyone else was having trouble with meds. So far, I am not, but things could change. 

    Jewly, I'm sorry that you are still in pain, and hope you get some relief soon.

    I'm not sure you can deduce that only 1 in 5 people come out of rads with flying colors: there were *many* people posting in this thread at one time, and most of them no longer post here. My assumption, and it's only an assumption, is that most of the people no longer posting here are not having much trouble. In my opinion, people tend to visit forums when they are needing information or are having problems, and once that's no longer true, they leave. I could be wrong, though.

    To all: I hope you feel a little better every day.

    adrienne 

  • somanywomen
    somanywomen Member Posts: 872
    edited April 2010
    adrienne, I am sure and hoping that there are many who are fine, and I for the most part have got back to life pre-bc, my soreness isn't constant pain, just sore enough when I lay on that side...But I do believe there are those of us who don't want to lose sight of where we have been and stay ahead of this rotten disease by having our eyes open and getting info from the most reliable source....which to me is all of us that continue to look for answers to live the best life forward.....I thank each and every one of you that take the time to relate your concerns so if any of us end up dealing with the same that we might have learned something from the first hand experiences of somanywomen....such as us........
  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2010

    I have learned a great deal from everyone here even before I started chatting to you all. Mostly you assured me that I wasn't the only one going through this and my feeling were validated. You cyber hugs helped. You are all wonderful. Thank you!!!

  • somanywomen
    somanywomen Member Posts: 872
    edited May 2010
    veggy, I forgot to say that most of the time I can only sleep on my right side, but when I do try to sleep on my back, apparently my mouth falls open (so my husband says) and sometimes I wake up and my mouth is so dry that it is scary and I try to make saliva because it feels so strange....I wonder if my arimidex has anything to do with dry mouth???
  • mimi1964
    mimi1964 Member Posts: 2,163
    edited May 2010

    Funny you should say that about a dry mouth Jewly... I have a dry mouth all the time now since I started taking the tamoxifen.  I'm guessing that is what the cause of it is and I constantly have to drink something or chew gum, which in turn will irritate my tMj.  LOL!

  • BonnieSF
    BonnieSF Member Posts: 101
    edited May 2010

    Rene, so sorry that T seems to be kicking your butt too. And you're taking only 10mg. I was taking 20 per day and was almost  thinking maybe I could be talked into taking half that. That's out. I have my first followup with the non-cologist on Tuesday. From what I can tell, the recurrence rate is 15% without T and 10% with. That's not much a gain for so much pain. One night, terrible pain in my TOES woke me up. I recall having a very dry mouth on T as well. Eyes dry too. I drank water as much as I could hold.

    I found an article online about a study that showed that taking the brand name version of T (instead of generic) eliminated the arthritis-like side effects. I was just about to email this to my doctor, but then felt dumb, in case the study was sponsored by the drug manufacturer. Someone else told me that the magazine was a reputable one, but I'm still too chicken. I'll mention it Tuesday, though. Here it is: 

    http://www.ncbi.nlm.nih.gov/pubmed/20347307/

    Jewly: Thanks for the tip about white tea and lemon! 

    Update: Thurs night the fever spiked again, which was spooky, but no more since then. This makes it seem more like it's just an infection and not something a lot more scary. I have not heard back yet about the test results. The swelling is slowly going down, but the redness is still there, and spotches are popping out in other parts of the breast. I tell you, lately I've been wondering if I should have just gotten a mastectomy right from the start...

    Bonnie

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited May 2010

    I know Bonnie I couldn't tell you the number of times that I have thought the same thing about getting the mastectomy.  Oh well, hind site is 20-20 they say.  That may be true about the name brand T but you know our insurance companies aren't going to pay for it.  Mine will only pay for the generic.  That's like name brand Synthroid it is much better than the generic for hypothyroidism but my insurance company won't pay for anything but the generic unless there is some reason you personally can't take the generic like an allergy.  O.k. enough said that's my gripe on the insurance companies.

    Renee

  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2010

    I just realized that May 9th will be the one year anniversary of when I found my lump. Its been a long and busy year. I've gone through so many appointments, tests, doctors, procedures and changes. I am different than I was in so many ways. I feel like I lost my innocence and my inner child. Today my son (he has asperger's syndrome) asked me if I was his mother of the future. He told me that he misses his old mom who smiled more, who didn't have gray hair and had long curly hair. The chemo robbed me of the curls and gave me straight, gray hair. I told him that I could dye the hair but the curls are gone.  I guess that was his round about way of telling me its time to dye my hair.

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited May 2010

    LOL ... Veggy!  you go dye your hair it will make you and your son and maybe DH feel better.  As for the curly hair you can always put a perm in it when it gets long. Wink  As my granny use to say, "there is more than one way to skin a cat".  haha!!! 

    Renee

  • BonnieSF
    BonnieSF Member Posts: 101
    edited May 2010

    Veggy - definitely dye your hair - maybe on May 9! Wow, a year already for you. Whoosh.

    Renee - I'm sure my insurance wouldn't pay for name brand meds either. When I talk to the med onc this week I'll ask about this. I might try one RX of the name brand stuff just to see if it is any different, and if it is, then fight the insurance company to pay for it. (A lot of ifs in that plan. )

    Finally today some of the redness of this infection has started to fade. So it's certainly an infection. Whew!

    Bonnie

  • 1marmalade1
    1marmalade1 Member Posts: 308
    edited May 2010

    Biotene comes in a mint flavour as well as the regular - the mint flavoured one also has calcium.  I found this one was a lot more pleasant than the regular Biotene.  I used it all through chemo, and I never had any mouth sores or other issues.  It is great for dry mouth.

  • somanywomen
    somanywomen Member Posts: 872
    edited May 2010

    I just noticed a new topic that hhfheidi posted "Seizure after treatment ends"....seems she had seizure yesterday and passed out.....says she's having MRI today.....thinks it might have been the paxil she takes....just crazy, HUH!!!!!

    TIP OF THE DAY:.....Take calcium with meals, but not with your multivitamin/mineral, as calcium binds with iron and zinc......

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited May 2010

    Thanks Jewly I've gotta get on some calcium one of these days... I hate pills!!!  I do take the calcium chews when I can remember them.

  • Jules824
    Jules824 Member Posts: 85
    edited May 2010

    Hi gang, long time noo talk. I hope you all are doing ok. Always in my thoughts and prayers forever even if Im not here. I guess by now you are all done with rads and improving. I hope. (I cant read everything I missed right now PLEASE, forgive me.

    Whats been going on----Things were going well, house was being remodled by my husband. I was getting out and about..

    And then it hit....

    My husband was taken to the hospital and admitted when he couldnt breath (allergic reaction  to over the counter headache pills). Now undergoing heart tests cause they found something while he was in the hospital. (I doubt he has heart problems, hes a fit as a fiddle IMO but will see and Im praying to God hes OK).

    And me, Im headed for neurosurgery consultations (that were put off during breast cancer). Because. my back went out just from turning wrong. Its been a hell of a time and the pain  been so bad I sit and cry and my nerves are shot.

    My poor husband dresses me (my pants) and gets my meals. Hes an ANGEL but i feel so bad cause hes going thru stuff too and I feel like a burden.

    During this was in the ER twice, (my old meds no longer worked for the pain).At the ER I had morphine shot, steroid shot, anti infllammatory shot, and was on steroids (orally) and now on oxycodone. I havent slept in our bed since ? and only get 2 hrs or so sleep a night on a recliner. The oxy is making me high as a kite and sick too and they want me to mix it with other stuff, well Im not mixing drugs so I take 2 oxy a day and suffer in between.

    I am very upset and scared of contimplating back surgery for fear of ending up in a wheel chair. And, I am so TIRED beyond belief. I see the surgeon and my pain team this week. They better do something. Ive had it.

    Sorry for all the whinning.. JUst wanted to fill you in and mostly let you know I AM thinking of all of you!!!!!

    Take care ((hugs)) I gotta go,

    Jules

  • somanywomen
    somanywomen Member Posts: 872
    edited May 2010
    Hugs to you Jules, sorry things are so crappy for you...Hope you find some relief from pain and worry....Thanks for update, nice to hear from you but so sorry for all your pain.....
  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2010

    Jules - (((((HUGS!))))) for you and your wonderful husband. Sounds like he takes good care of you. I hope they find something so you can manage the pain better.

  • mimi1964
    mimi1964 Member Posts: 2,163
    edited May 2010

    Good to hear from you Jules sorry things aren't good.  Come here and complain when you want to.  Hope your pain gets better soon!!!

    Saw my rad onc today and got a good report.  He drew some labs one was a cancer marker.  I will get the results back on Friday.  If all is well I don't have to see him again till Novemeber.  He said he usually doesn't wait that long but I see my other onc in August so I could go till Nov to see him.  I am so glad they are doing it like that there is no point to see a doc every 3 months, if I don't have to.  Hugs to all of you!!!  

    Renee

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