Quality of Life and Longevity

you know i don't think any of us knew the total impact that would come with the dx...we knew that it was bad,,dying was a posibility but the medical doctors are like .."BUT we have drugs that can HELP you...we will do this and this and that and fight this thing...well of course who of us does not want to fight it and when you are a newbie on the boards everyone is going to encourge you not tell you how bad things can suck when all the txs are over...For me little things tick me off...LIKE after a long day of walking on vacation..i was tired and achy and ahhh that hottub looked so good....BUT not for me!!!! I live daily on advils all day...my vision is getting worse by the day...(thank you tamoxifen) and i haven't slept a full night in I don't know when because of the hotflashes and night sweats...Being slammed into menopause is not fun!!!

I think the best thing our medical community could do is to prepare us for some of the changes we may not have been aware of...I had no idea the nerve damage in my arm would be permanent..I wasn't thinking about the long term risks of lymphadema right after my dx and i was not thinking about having so much joint pain and dry skin and sexual disfuntion...I was just thinking...I have cancer in my breast and i want it gone...So in the long run we would have probably all done the txs we did but the emotional let down after tx would be so much less I think if we KNEW ahead of time that normal will be redefined and that new definition is going to take some getting used to and YES it is a compromise. Then again i don't know that being newly diagnosed you are ready for that either...I think the medical community sees so many of these things as an acceptable SE and YES we are here..BUT they need to acknowledge the emotional pain and grief that comes along with losing some things in your life that while maybe trivial...they are little creature comforts that made life a little fun...I don't know if this makes sense. I know I am rambling...Been a long day at work in from of a new computer screen and that and the need for a new pair of glasses has my head soooo fuzzy!

  After reading the posts on this subject, it has just reinforced my plan to tell the onco I have had enough Abraxane.  He planned on doing scans after 24 treatments, but I do not want to do the last two which may sound stupid to have gone this far and not finish.  But the SEs get worse every week and I have the awful ooozing nails and the neuropathy in my feet which seems to be a little more pronounced each week and now is the entire foot and not just the toes and also my hands have it, but not as bad.  I could put up with my food having no taste or tasting like crap when I did find something that I could taste and losing the hiar was not such a big deal since I have had 19 years to get used to the possibility it might happen, but the neuropathy along with the constantly tearing eyes which are do bad I sometimes feel like I am looking through a windshield with wipers that don't work, are just too much to risk having last forever.  My thought is that two more treatments may just put me over the edge on SEs,but so far as jeopardizing the effectiveness of the treatments, it should not make all that much difference. 

    From the very beginning my onco did say we needed to look at this disease as a chronic illness and treat it that way.  He also told me there were many ways to fight a war and that was why we did AIs for years with great success and held off on the heavy duty artillerary (chemo) until it was absolutely necessary. I was fortunate that I did not have many SEs with the hormonal route.  We did just as you wrote about EWB...stuck with one until it quit working and then moved onto another one.  I was extremely fortunate that most of them worked for a long time and kept me stable.  He was talking long term with this Abraxane/Avastin combo also, but I cannot imagine livng on Abraxane the rest of my life.  A few weeks ago before I realized what had happened to my feet I fell twice in one weekend.   To think that the neuropathy may not go away scares the crap out of me. . 

     Quality is VERY important to me and I do not want to risk not being able to walk around or not being able to use my hands since everything I do involves using them. 

    I am not giving up, just want him to look for a treatment that isn't as hard on me.  I do not plan on living forever, but I do want to live and not being able to do things because of side effects in my book, is not living.     Marybe

Marybe....thanks for posting and sharing your feelings with us. I understand what you are saying and I hope that something is available that will control the disease and provide you with the quality of life that we all talk about.

kversteegh

I just sent you a PM about my neuropathy treatment. I hope it helps. PM if you need more information. I am going to my pain doc this Thursday, so I might be able to get some answers for you.

All,

I feel for all of you ladies and I hate that I am not alone in my depression, but relieved that I am not overreacting as my oncologists have tried to make me feel. My psychiatrist sympathizes and has suggested me seeing a counselor to help adjust, but there are none close by. 

I wanted the truth about every aspect of my treatment and was furious when the doctors didn't say anything until I started having symptoms. 

Maybe they should have told me (when I was hysterical about losing my breast and the impact that would have on my sex life) that I would lose my desire for sex and find it agonizingly painful due to the chemo.  I, for one, am not sure that I would have taken the treatments had I known. My oncologists keep saying, "but you are alive" and I respond, "but what quality is my life when I spend weeks alone in bed in pain and wishing that I was out of misery; wishing that I still had savings and investments to leave to my parents instead of having it chewed up by unemployment and medical bills; wishing that I wouldn't have to watch as everything that I had worked to attain slips thru my fingers and knowing that I will in all probability never be able to work again or enjoy any of the hobbies that I love?"

I have to wonder if maybe we are using the wrong forum for these posts.  It seems that we are preaching to the choir and the ones that need to hear this are the doctors and researchers that never seem to be on these boards.  Does anyoen know of a way to get our thoughts out to the public and the medical community?  Before my dx, all that I had heard about breast cancer treatments were how wonderful they were and that great progress had been made.  I never realized just how barbaric the tx really were. Even after my dx, I met women that had been dxed with bc that were grateful to just be alive, even though they were on antidepressants and had been for years. 

I know that life is precious. I know that we are grateful to be alive. I know we all hope that these tx will prolong our lives and worry that they might not be successful. But shouldn't there be more? Shouldn't the doctors and researchers be more concerned about our quality of life?  If men had to deal with the same type of barbaric reconstruction options and lack of libido from chemo ( they do not have to worry about it as much, believe me, they have different SEs) do you think that docs would be so indifferent to the SEs?

Ok I am ranting enough, I guess. It seems that is all I do these days. 

Yipppe ey oh......I just returned from the oncologists office and we discontinued the abraxane.....also the avastin since he said it is an adjunct to the chemo so not much point in taking it if we aren't doing the chemo.  He acted like he did not know of my SEs before and who knows maybe he didn't since I have been seeing a PA and several times no one, just getting treament since the place is so busy.  He said there comes a time when we have to weigh quantity vs quality......DUH? He said he has lots of patients with severe neuropathy and they cn  barely walk, but it doesn't seem to bother them, yet they will gripe that they lost their hair. What is a big deal to one is not to another and he said he can't figure it out.  Well, for one thing I am sure he has never experienced any of them so that is why he feels that way.  He told me of a patient he has who played the violin, loved playing and even gave lessons sometime to children....after three treatments she started getting the tingling and some numbness in her hands so they immediately stopped the treatment and found one she could tolerate.  He said we do have to find a new chemo for me, but as for now, I get a break for at least a month and that makes me very happy.  I did get my faslodex injection and my zometa today.  I am having scans Monday so then we will see how much good the abraxane did.  I can't tell you how happy I am to be off of it.  Now I must get ready to go to the opthalmalogist to see if my tear ducts can be unclogged.  I am excited at the thought of possibly getting rid of some of these SEs.....know it may not happen and also it will take time, but just thinking it might happen makes me very happy.  The one nurse said to me when Itold her I was happy and knew it was terrible of me thinking that way since maybe the abraxane really did  a number on the cancer cells and she told me she's been at this a long time and she thinks we should take our silver linings wherever we can find them.  He mentioned some drug that either started with a G or a J and said it does not mess up your nails or cause neuropathy, but that everything has some SE.  I think I will try the vitamins you mentioned Firni.    OH, regarding female oncos.....I had one before this guy and she was as cold as cold could be.....I blame her for allowing me to go from barely a Stage all the way to Stage lV while under her supervised neglect.    I truly love this onco since I feel he really saved my life, but I don't think he cares to much about the SEs unless the patient tells him, it's just really bad.

I think for me, I am frustrated, sad...not sure what is the right word at the lack of acknowledgment for the extent of these less harsh treatments.I don't want to be constantly thinking or wondering if I am making this up in my head, wondering whats wrong with me. I know chemo and rads can be devastating and my heart goes out to all who have had to deal with them, but at least everyone knows and recognizes the problems---there are resources, and CAMs recommended. For me and others like me that is not there. I don't want to be whiney or come across that my pain is worse than yours kind of thing...it ALL sucks and all of us go thru our own nightmare.  I know a cure is not in my future and I'm ok with that, cancer is a complicated disease; but I would like to see more advances in the CAM, pallative care area more attention to the chronic part of this. Great I am alive but at what cost? How do we fix that? Who do we talk to?

Thanks for the suggestions regarding vit D and glucos/chondr. Unfortunatley the Glus/chron did nothing to help that. I take vit D already, maybe I will ask about increasing the dose. I have tried lots of different things OTC and health food stores etc and am now up to morphine and percocet. Always looking for things I can do that may help, but its all been on my own, no help with the research, no leads, no pamphlets with suggestions. Even most of the support staff at the CAM area of the cancer center don't really understand.

I hope every one finds what they need.

EWB, you should not belittle your pain, everyone has a different experience.  Another women I know had a terrible time on Femara and she took a few days off, did a lot of meditation and concentration, and went back on with no more SEs.  Some women do better on Arimidex and some do better on Femara.  I have taken a day off now and then, and when I go back the pains are gone.  One thing I did not mention is strength training.  Most people have no idea to what extent using muscles can improve bones.   When I studied physical anthropology, I read some scientific articles that were eye opening...in short, whenever you use a muscle it will pull on the bone membrane and stimulate the deposit of calcium.

I run several times a week and I don't do strength training as often as I should, but I have been told that strength training might be the best antidote to pain.  If I were you I  would take a day off when the pain is unbearable...but that is your decision.

Another suggestion I might make is yoga...it works on the right brain and on fine tuning your body rhythms and believe it or not, that right brain stuff works!! I am a strong believer in it ever since I learned to draw using my right brain!

Mary, thank you for the compliment on my photo...I think I just de-saturated the color and warmed the tone a bit.  It was interesting to hear about your Mom...I think many of us have the talent to be artists and don't know it.  I was always interested in art but discouraged by my parents, but my husband always encouraged me because he liked my drawings.  He bought me books, and encouraged me to take art lessons, and voila!!  the artist blossomed!!!  Now I am doing the same thing for my sister....just sent her a little art kit before my trip, speaking of which I'm still here in Quebec.  This AM I am being treated to breakfast in bed and I'm on my laptop just like at home...!!!

Talk to you gals later...

Miz 

OK I am back to rant again... and maybe to offer some support for those that can use it.

Firni,

My neuropathy treatment consists of methadone twice daily, percocet daily as needed for pain, Neurontin 300 mg 3X per day, vitamin supplements that include B6 and B complex. Pain doc says that the B vitamins have been studied and have shown a lot of neuropathic value for patients with nerve damage. I have physical therapy twice a week for at least one hour that concentrates on low impact, mild, exercises to try and keep my muscles from atrophying. 

My legs are extrememly sensitive to touch - even wearing lightweight pants can be painful at times.  If I stand, sit, walk or lie down for more than a couple of hours, my legs cramp and become extremely painful to move.  I have a form of what seems like "over the top" restless leg syndrome. I am constantly moving them. My balance is shot and I can't tell where my feet are a lot of the time. I use a cane now .  My hands twitch, shake, tingle and become numb. Prior to tx, I did yoga and can no longer do any of the standing poses. In fact, most of the poses are off limits to me now.

The meds and therapy have at least made it bearable, I still have chronic pain. My psychiatrist suggested that I try to get someone to drive for me, not just because of the pain but also since I don't know where my feet are. I have accidentally hit the gas when I thought my foot was on the brake.

My prescription express includes 3 different anti anxiety drugs ( twice to three times daily and as needed ), 5 different asthma meds, scrip eye drops (dry eyes due to meds), and the pain meds.  

Mizsissy,

I had to cease all treatment due to Congestive Heart Failure.  That was due to the chemo as well. I never thought that I would be disabled at this stage of my life. I was healthy and active. The picture on my profile was taken days before I started the first round of chemo. I was getting ready for an amateur dance hafla.

I am waitng on the results of my last heart scan to determine if I can even survive the round of reconstruction  surgeries this fall.  For me this journey started with my finding the lump and getting a post - it note from the radiologist telling me that I had cancer - he didn't even have the deceny to hand it to me himself, he sent in a technician.  I am always glad to hear that others have had an easier time but I get so envious and depressed.  I always thought that I was a smart, capable, independent woman that could handle any obstacle, but cancer, my doctors, the treatments, and the economy are threatening to dissolve that image.

Good luck to all of you, I hope that you feel better...

C

After reading this thread ladies, I am wondering if the victims of car accidents who suffer mild brain damage and light physical injuries are treated as we are by the medical fraternity.  It seems to me that because we choose to have the txes with the se's, we are looked at as less than worthy of 100% attention/tx/research.

 If we had more visible scars that we were not responsible for, would there be more empathy for us in the long term. 

Does the fact that they cannot pinpoint the exact cause of our disease that, maybe, we have inflicted it on ourselves due to lifestyle, make us less deserving than a drunk who stumbled off the curb into an oncoming car?

I sometimes wonder.

Sheila. 

Li_sid: what a great husband you are to do so much of the research. Knowledge is power but what you're reading can overwhelm the best of us early in the process! Take it one step at a time, one decision at a time. Each decision is a very personal one, and I encourage you to research some of the scientific studies in addition to reading about our individual stories. That will give you a fuller picture.

I am probably among the majority when I say that at first, I thought there was NO WAY I could do any of the things that lay ahead of me. But we do -- and that's why you hear words like "warriors" and "survivors" used to describe women who have completed treatment for breast cancer. The journey isn't easy but it's do-able.

Best of luck to your wife. Having the support of friends and loved ones will help immensely.

    If anything bad could happen, it sounds as if it has happened to you.  I just feel really really bad for you since as I have often said, I consider myself to have been extremely fortunate throughout my time dealing with cancer.....it makes me feel guilty that you have had to go through so much.  I am sure if I had half the crap you had to deal with, I would be full of rage and depressed also.  What did the hospital say when you voiced your grievances? 

Honestly, I feel that I do live in a third world country. My second surgery experience was 1000 times better than my first surgery. I was scared and did not want the surgery. It took my niece (who had come down from Maine specifically to get me into surgery) forcing me to stay at the hospital. She had to leave the day after my surgery and fly back home. My surgery was a skin sparing unilateral mx  which involved morphine. My time in recovery was longer than the surgery. I did not know that I was allergic to morphine and they used it during surgery and had me on a post op morphine drip for 5 days. I threw up, I hallucinated, I itched, I was suicidal, and my docs blatantly ignored everything except the suicidal outbursts. My second surgery was due to complications from the first - that is another story in itself. 

My recovery was excruciating and no one had prepared me for the pain. No one told me not to drive and I drove myself everywhere for the first three weeks. Then when I complained to the PS that I was still having trouble driving, he pitched a fit.  I asked him how he expected me to get to his office when it was a 2 hr drive and I am ALONE! His response was that I needed to ask someone. As if I hadn't already exhausted all of my options. By then I was no longer working and did not have a staff that I could depend on to help me.

No matter how many times I tried to explain to my docs that I live alone in the "boonies" (sp?) and have no support group to help me , it never sunk in. The last visit with my PS I was finally able to get him to actually SIT down and answer my questions. We discussed that if I had to have extensive recovery after recon, that it was impossible for me to have the surgery. He finally suggested that perhaps they should have and will consider a rehab hospital stay after my surgery for me to recuperate. 

He finally changed from Mr Hyde to Dr Jekyll. Hopefully, he will remain Dr Jekyll. His bedside manner was the worst ever. Well except for maybe the first surgeon that I was sent to see. The first surgeon took one look at my breast 3 hours after my mammo and post-it note and said:

"Well, you know this is obviously breast cancer and I need to cut that THING off. "

He and his nurse could not even figure out how to use some needle to do a biopsy.  I would not let him touch me and demanded a second opinion. A few months later he was diagnosed with Alzheimer's. Am I glad that I insisted that he stay away from me? You bet!!!!

I did eventually have an US guided needle biopsy and thought that finally I had a team that cared. Boy, was I wrong!!! My "team" dissolved almost as soon as it was formed. My recovery after the first surgery was a nightmare. I had many friends and family members that feared I would commit suicide. I came on this board and posted, talked in the chat room for hours and tried to keep my sanity. I am still fighting to keep it.I really miss not having a SO, something I never did before the dx. At least, as you say, it would have been someone that can remember for more than 5 mins that can get information and instruction.

I have large gaps between postings and visits here because I do get enraged at the unfairness and now it seems to increase my anxiety rather than lessen it, but I still come in and rant occasionally. LOL

The hospital, BC/BS, the Condition Care Program therapists, have all been very "sympathetic" regarding the grievances, but I don't think they ever did anything or even had a second thought about it. Especially since every time I spoke to them, it was as though it was the  first time I called. I was constantly rehashing every horror that had happened.  It finally became too much and I am too overwhelmed to fight any more.

C