CancerCompass message board discussion started by JillW on 2/23/2008 http://www.cancercompass.com/message-board/message/all,21257,0.htm Fri, 05 Dec 2008 00:00:00 GMT Fri, 05 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ This is a continuation/follow up on the alligator hard tissue issue  Last week I started having pain underneath the effected breast. Had an ultrasound that questioned the tissue which the radiologist said was okay.  Yeah right.  Then X-Rays which showed 2 fractured ribs which was caused by coughing!  The radiation has caused deformities, enlargement, discoloration, shrunk the pectoral muscles and apparently weakened the bones below the area radiated.  I'm on vacation for a month but plan to get aggresive with all the medical people involved with my treatment both present and past.  If I had to do it over again I would opt not to have the radiation treatment.  It is becoming apparent that these side effects are permanent.  Beware of the information they don't give you before treatments.  JillW Sat, 23 Feb 2008 00:00:00 GMT  On 2/24/2008 Kbcns7 wrote:My own personal experience is that oncologists are never really honest with a cancer patient.  Not honest about chemo side effects, not honest about estrogen-suppression treatment, certainly not honest about radiation.  I've had to suffer the side effects of whole-brain radiation for more than 10 years, as well as of the mutiple chemotherapies I've had over the years which are well-known to cause heart defects, and all anyone ever said about brain radiation was that I "might" have some cognitive difficulties.  Yeah.  Guess what?  I haven't been able to read a book since 1998.  Before that I read about 5 books a week.  I can't even concentrate enough on filling out forms, writing notes or letters. Due to radiation I lost all my hair and my follicles were permanently destroyed so I can't even get hair implants.  I'm glad that my onco did not suggest breast radiation, at least, because I didn't know enough about it back then.  But since then I've had multiple recurrences, and in every instance one of my doctors wanted to use radiation.  Because of my own experience the first time and what I've learned subsequently, I will NEVER allow radiation to be used on me anywhere.  Radiation will DESTROY tissue, it will destroy surrounding tissue and bone, and once destroyed most tissue does not grow back as before.  Your experience is what most women who've had breast or chest radiation go through.  If you ever get lung metas, stay away from radiation.  Stay away from it period.  It is so destructive to tissue and bone there are no words. As 5 year BC survivor I would rather have the radiation side effects than have my BC mets to the rest of my body.I was at a high risk for recurrence and so far it has not  come back . I really believe had I not had radiation treatments my BC would have returned by now. Each individual has to make their own decision but I will take the side effects of radiation,not bad for me, over cancer anyday.   Judy39 Mon, 10 Mar 2008 00:00:00 GMT Hi!  Diagnosed Nov 2004, surgery Dec 2004, chemo 7 months, then daily radiation for total of 42.  Lumpectomy , 11 lymph nodes removed.  On Arimidex since.  Did not have bad side effects from radiation right away apart from the fatigue which I attributed to chemo.  5 months later, while my mother lay on her death bed, my breast became inflamed and swollen.  As my oncologists clinic was 1 floor below the unit my Mom was in, I snuck down and requested a quick look.  I was told I was having a reaction to the radiation and it would have to be monitored.  My Mom passed away and I was devastated.  She was my best friend. My Mom was my greatest comfort.  I still cry thinking about her.As time went by, about two weeks, my breast became as hard as cement and extremely painful.  Every step was like having a knife stuck into my chest.  In about another two weeks, the whole area from my breast to under my arm reaching towards my back had become rock solid and painful.  My oncologist said that unfortunately there was nothing to be done.  I had radiation overdose and no known therapy.  He said over time it would get better and I needed to be patient.  Every check up I am told the same, patience.  Around June 2007, I began noticing a slight softening of the tissue around the edge of of my back.  Since then, the softening has progressed to the breast and at this moment, I have about half the breast tissue still hard.My oncologist told me that in his whole career { about 30 years } he's only had 2 other patients like me.  He also told me they are both past the ten year mark indicating that they are still alive.  My life since diagnosis has been a real learning experience.  I envy those that go through it and are " back at work " 1 month after surgery and have  a normal life.  I was told some people work while having chemo and radiation.  Only side effects maybe slight fatigue, nothing going to bed an hour early doesn't fix.I slept for two and a half years.  My fatigue was such that all I could do was make it to the toilet before I wet myself.  Going for check ups was a huge ordeal.  Having a shower wiped me out so bad, I had to rest before I could get dressed and into the car.  Very slowly, my energy level increased.  It comes in cycles.  Never can count on how long the next one will take.  I feel bearable, then day by day, I feel worse until I feel like I can only lay down and die.  The day after, I feel a teeny bit better, and so on until I have a day when I feel almost half normal.  During this time, I make a mad rush to clean up the place, laundry, vacuum.  Then it starts getting bad again.My body aches, my bones hurt, have arthritic type pain, walking is painful from joint pain as well as breast pain.  It goes on and on.  I have a friend that harps on me that she knows people that have had breast cancer and they're fine after a couple of months.  Even my GP was short with me last week when I told her I was still not sleeping.  From the moment I had surgery, I have experienced terrible hot flashes every 30 minutes, give or take a few seconds.  As such, I wake up every 30 minutes and sometimes I cannot fall back asleep for an hour or two.  I have not missed one hot flash since Dec 2004.  Truth be told, my flashes started coming every 40 minutes last summer, letting me sleep that extra 10 minutes.  My doctor has tried Gabapentin, and numerous other treatments, none of which have had any effect.  Early on in my treatment, I was given Medroxy Progesterone ?  I slept like a baby for two weeks until I was abruptly taken off as I was told I was estrogen and progesterone positive and this medicine was extremely dangerous for me.My regular doctors last visit was an eye opener.  She basically suggested the reason I am tired is because maybe I need mental therapy!  Maybe I do, but to dismiss the fact that the medication I am on is causing this problem { and others } and nothing she's tried so far has worked is not my fault!  I suggested to her to look up Arimidex and it's side effects more than a year ago, and she still hasn't.  It seems she prefers to put it down to depression or the like.  My oncologist is far more understanding.  He told me that the Arimidex is the best medicine for me and if I was his mother or daughter this would be the only choice.  He acknowledged the side effects and suggests that in time I will feel better, patience.  He always makes me feel better, helps put things in perspective, helps me brush off stupid remarks by so called friends.  Even so, every once in a while, I get to feeling so bad, I really feel like I am on my last legs. I begin to question if I am crazy.  I've always been a positive, hardworking person, enjoying life.  At the moment, things that used to bring me pleasure are out of reach due to my condition.  Even my eyesight has let me down.  I used to love to read and paint, but my eyesight still hasn't recovered and when I try to paint anyway, I get sick to my stomach because my eyes keep going in and out of focus.I really feel alone at times.    Kathy d Sat, 15 Mar 2008 00:00:00 GMT Wow, Kathy d, I am soooo glad to read your story. I just found this site and want to compare notes w/ you a bit. I don't know how old you are but your story is very much like mine. I'm a 3x cancer survivor, colo-rectal in 87 (chemo, rad, surgery, chemo), skin ca. in about '95 or so (surgery), and breast in '01 (surgery, chemo, rad, reconstruction, then biopsies, biopsies, biopsies, double mast., reconstruction, removal, ongoing pain).  Still here but lordy, am I tired.I hope you check into CFS, Chronic Fatigue Syndrome.(CFIDS.org) I have been diagnosed with it recently and upon reading about it, it apparently begins w/ a virus, and cancer can be a virus. Mine in '87 was. (Maybe all of them are, I don't know.)  All I know is I blamed the fatigue and brain fog on chemo for nearly 20 years and am so relieved to know it's a combination of things and apparently not depression at all. Never thought it was, but some Dr.s did.  I've been on every anti-depressant known to man and none helped at all, some made me depressed or suicidal and others were like water. Very EXPENSIVE water! Not that I don't have good reason to be depressed, but my brain is very active, usually fairly happy in a calm sort of way. In years past, I DID suffer from depression, but got a divorce and got over it. ;-)   So I know what it's like and this isn't it. I want to do many things and work on many projects like I used to do, but the body is exhausted. Most days I read a lot, take care of my pets, cook a bit, do laundry, or visit w/ friends, etc. I would like to sew more, to garden again, and travel more, but it all takes sooo much energy, I have to juggle and try to pace myself. I have taken thyroid most of my life, it doesn't help the fatigue at all that I can tell, but it doesn't make it any worse, I guess. For years I often slept around the clock and still cycle w/ fatigue and semi-zombie and have to take prescribed stimulants to even resemble a normal day for others, then am laid out for 2-3 days to recover. The insomnia for years was the pits, but now I take Melatonin and drop off within an hour or so. I read or listen to music during that time to relax. Sore all over every day, some days worse than others, but it's not ever completely gone. Mine isn't joints but muscle and even skin aches. My hot tub helped me cope w/ my Dad's death, then Mom's but now have lymphedema so that's not advised anymore. I lost my Mom, too, in early '03 right after my year-long bout w/ breast cancer and treatment was just ended (I thought). It was very traumatic. She was an R.N. who had seen me thru the colo-rectal ca in the late 80's and we were very close, then to have her die of the same thing! After Mom's death, I had more cysts, more biopsies, and finally a double mastectomy, then reconstruction, implants, an infection, removal of implant, hardening of the skin, chest aches and muscle pain, spasms, etc. etc. etc. This all took 3 more years. I'm now 2 years out from the last surgery, need more to get use of my arm back to normal, but haven't found a surgeon who can deal with radiation damage and isn't into 'beautiful' and 'uplifting' and 'youthful' instead of just making a body work right again. I, too, envy those who work thru their treatments and are back at work full time and full speed ahead.  I've been unable to work full-time since '87, have tried twice to work part-time but that's all I did, dropped into bed upon arrival home and got up for a shower, rest, brush teeth, rest, dress, rest, drive 15 min. and work the next day. Did that for 18 mos, was relieved when I was laid off for not being able to work up to full time as they wanted. When I get tired, the brain disconnects.I might be able to work 4 hours now, but it's never the SAME 4 hours. Am still trying to dig out from that period of time, am behind on everything here at home. People just think I'm a slob, but it's 'stuff' and unfinished projects, not dirt, food, or bugs at all, just no energy to straighten up much or for long, and organizing takes a lot of stamina. Sorting is the bane of my existence. My head just swims and I now understand the blond jokes a lot more than I once did! Energy is a bit better now, most days, but nothing near normal. I tend to push my limits, hoping to increase them, even after 20 years. I'd LOVE to work again, even part-time, but energy is so erratic. I have to pace myself . . . if I go on a tear, I pay for it later. No advance planning can be certain, it depends on how I feel that day, I nearly nod off at times in spite of meds to keep me awake, but am told I do not have narcolepsy. I DO have sleep apnea now, plus asthma that began during chemo in '88. My radiologist said it's called chemo-induced asthma. Because of this, low oxygen is also my problem; it's like high-altitude sickness in some ways. I set off the hospital alarms every time!It's all tiring.  I hate that part of it.  If I didn't have such a black sense of humor, I'd not be here now, but there is always something funny or strange about life as I know it.A friend who 'harps' is NO FRIEND. Until she walks in your shoes, she cannot judge. My Dad thought I was malingering until he, too, had chemo and radiation for his lung ca, then he never said another word about 'how lazy I was', he understood Big Time how tired one can get and how very frustrating it is to look so healthy and feel so rotten.  Spend time with those who appreciate you and help you be your best.  Kathy, you are NOT alone. If your Dr. won't listen or even try to understand, get another one. Life is too short to have people as 'care-givers' who won't even attempt to help you, this is not a One-Size-Fits-All world, neither is health. We all react differently to treatments and medicines. One of my oncologist/radiologists said they probably will someday find that there was damage we don't even know how to test for, that isn't showing up on my tests now. On paper I am normal, whatever that is, but something certainly went wrong.Try to do what recharges your battery and enjoy everything you can. There is still a lot to look forward to in this world.  I hope this did not depress you, but that you know there are others like you, fighting weird problems nobody seems to understand.  The key word is FIGHT, we are survivors and that is our job. ;-)  Hang in there and keep your sense of humor. I'll bet there are many more like us out there. Take care,Barb in Texas  BarbInTexas Tue, 18 Mar 2008 00:00:00 GMT  Barb from TexasHi!  I have not been back since March.  Just not too energetic.  I am amazed that someone else has experienced what I am going through.  I searched until I couldn't anymore, and just finally gave up.  I'm glad to be able to talk to you.My last check up was good.  My oncologist said everything is pristine.  I always worry.  He told me, again, the radiation overexposure is causing a lot of my problems.  Arimidex, the rest.  He says patience, in time, I will get better.I've always had a few allergies, but now, it seems I'm allergic to almost everything.  Meds either don't work at all, or work too much.  This has always been the case and probably the reason the radiation had this effect.  Can't really blame the doctors.  How were they to know?  I had a normal course of treatments.  Morphine sits in my drawer from surgery.  No effect whatsoever.  My surgery went well, although they had to give me so much to put me out that they couldn't wake me afterwards.   The doctor sat by my bed for 7 hours before resorting to some kind of drug to get me to wake up.. Then I went into convulsions and threw up for 20 minutes.After my first surgery, I became so infected, I had to go to the hospital every morning and evening for 3 weeks for intravenous antibiotics.  This did not work.  Had to go in for another operation to clean it out.  My sleep has been the biggest issue for me at the moment.  My body has fallen into a pattern of not getting sufficient sleep.  For the last few weeks, I have been surviving on about 1 to 2 hours sleep in a 24 hour period.  In the past, the doctor tried different antidepressants to help me sleep, didn't work.  Went off them after trying for the last couple of years.  Have tried Melatonin, maybe not taking enough, but found myself having terrible nightmares within the usual 10 to 25 minutes of sleep.  Didn't help me to sleep.  In fact, I took 2 sleeping pills 4 hours ago and am wide awake.  I am getting desperate!  Someone on this site said she felt like she was getting hit in the head with a 2 x 4 every time she has a hot flash.  Describes it well.  It's been 3 1/2 years since I have had a decent nights sleep.  I used to sleep like a baby.  I would fall asleep within 10 minutes and sleep 7 to 8 hours without waking up.  How I long for just a few nights of deep sleep.Calcium and vitamin D gave me a terrible rash all over my body, some spots are still evident, even after 5 months. I do take 1000 mg vitamin c, 400 viit E, selenium, zinc and one multi vitamin without problems.  I stopped all meds [except the Arimidex] and vitamins, then introduced them one by one.  I try to eat a huge salad with at least 9 different raw veg every day, don't eat any meat [not since 1976] still eat a lot of fish, particularly salmon.  Root veg, squash, turnip and eat as much fruit as I can.  Have a glass of blueberry, pomegranate juice every day, sometimes orange or carrot.  Diet is quite good, so I know this has not been an issue.Every day, no matter how I feel, I push myself.  As you say, this doesn't seem to work very well.  Usually ends with me unable to barely move for 2 or 3 days.I completely understand what you are going through.  Sometimes I think the doctors and so called well meaning friends should experience this, just so they could find better ways to cope for all of us, then I feel awful, as I don't wish this on anyone.  Still, it never really seems to register.   Apart from the terrible pain and fatigue, the frustration of not being able to do things is severe.  As you say, energy is unpredictable, sometimes there isn't any, sometimes just enough to do the bare minimum for a few hours.  The body just doesn't want to co-operate.  I don't know how much of it is the Arimidex. Getting too tired to write anymore.  I hope you are feeling and getting better!!!  Would love to hear from you.Kathy from Canada   Kathy d Fri, 11 Jul 2008 00:00:00 GMT