Quality of Life and Longevity

Thank you so much for all of your replies.

 I have read through many of the studies, sites, forums. etc..  And you are right Texas357 that it is all overwhelming at first.  I have been going to her doc appts with her and save all my inquiries for there.  This way she hears the answers from someone who knows and not a yahoo who's been studying the internet.

What I am trying to earn from this forum is the reality of what is to come for her.  I know she will probably experience moments of hopelessness in the weeks to come and I think that if I know that it is doable and not hopeless that I can pass that on to her.  Indeed, I am pretty upset to read the potential SEs of these treatments but I am also encouraged for her by the successes. 

She is getting the lumpectomy Tuesday of next week, Aug 4, Firni.  But she is considering a mastectomy as well.  She is well informed on the surgery options and this will be a personal choice for her.  We are getting a second opinion as well.  We will get a second opinion for the oncology too.  We live in Long Island and so have access to Sloan-Kettering which is where I booked her second opinion visits.  Yes the oncotype genome test is what I was referring to but didn't know the name.  She will be getting that done which I think is good, and her oncologist will use that for added knowledge.  If she decides to take the tx I will remember your tip to take it at night if she experiences joint pain.  She prefers natural remedies and so all of these western medicine treatments are scaring her.  She's barely ever taken an aspirin and never had a surgery or hospitalization before.  To now be confronted with surgery and radiation and drugs...it's all a bit much for her.

Thank you all so much for your advice.  Hearing your experiences has been informative and encouraging.  I will keep in mind that the worst problems are typically heard the loudest and hope for the best.

Lil_sid: Many of us, myself included, tend to prefer natural remedies to pharmaceuticals. Be reassured that there is a place for the natural remedies as well, but in this case we need to drag out the cannons.

Natural remedies can be beneficial additions to traditional medicine. For example, I'm using Omega 3 fish oil supplements to help with the joint pain from the Aromatase Inhibitor that I'm taking. Sometimes I need to toss in an Advil or two, but mostly the fish oil is enough.

Visha,

Where are you located?

I doubt that I can offer much help as I live in a rural area away from everything and my benefits have also been cut and my insurance premiums went up. Benefits were cut $1200/mth and insurance went up $500/mth. I can sympathize with you. I don't think anyone can make an informed decision about helping you without more information.

Perhaps you can talk to your local Dept of Family and Children Services. Sometimes they have information about resources and facilities that can offer help.

C

I'm exhausted but angry after reading this whole thread.  I haven't been on here for a while because someone important to me on here died.

This is the third summer to be ruined for me by chemo.  I'm so sick of it.  I never got rid of the fatigue anyway, and forget having a brain.

They should tell you the things like sex and stuff that are absolutely going to happen, like they tell you you'll lose your hair.  I feel really bad for my husband.  I'd bet they don't tell you the other stuff because they think they'll put the suggestion into your head.  I hate when they say "Hmm, I've not heard of that side effect.", like I'm gonna make this up?  I, too, feel like I'm whining.  When I complained too much about one tx the onc offered to discontinue it and everyone around me had this attitude of "You can't just give up!" 

I agree with the touching.  I don't like the fact that I feel that I have to be brave and funny when I see the onc or go in for chemo.  The old think positive thing, you know.

Enough ranting.  I'm too tired to type.

THANK YOU, finally I know I am not alone.  I am one year, one month post chemo. Big Pharm rules treatment and I am extremely angry that long-term SE are NEVER discussed.

Last night I was on a local website and advised a woman if she could survive without chemo do it.  However, if she couldn't be prepared.  My reply was there when I turned off the computer, but funny, it was gone this morning!  The blog started at a chemo site.  

I also cannot believe any caring doctor/person would allow a pre-meno woman to leave the office after the second treatment without warning them that they will slam into menopause in the next two days.  Why not let them know, do they really think the "suggestion" will bring on hot flashes?  OMG - I had a breakdown in the parking garage at work and couldn't even get out of the car, let alone quit crying.  I was flashing every five seconds - do you think it would not have happened if I had been informed?  I didn't know what was going on. But, when I called the dr's office from the car, I was told, "We have a pill for that."  WHY THE HELL WASN'T THE Rx GIVEN TO ME BEFORE I LEFT???  

My last appt. w/ my oncologist was spent with him pushing Femora and me refusing it.  He even gave me a 30-day supply!  (He sure didn't give me the Effexor.)  I never opened it, and called him a week later and got the Tamoxifen.  He said I had an 80% chance of the BC never returning if I took the Femora and only 50% with the Tamoxifen.  When I saw my surgeon in Feb. 09, he saw my frustration - I made sure he did - and asked the same question I had asked a number of doctors, why do I need a drug that cuts estrogen to my breast tissue when I don't have any breast tissue?  He said he didn't know and we called the onc.  I found out the lie - it only decreases the chances by NINE PERCENT - NINE PERCENTAGE POINTS - is that worth it?  My quality of life and bones are more important than Big Pharm and NINE PERCENTAGE POINTS.  

I made an appointment with a new onc and will see him in two weeks, I swear, if there is a drug saleswoman in the reception area, I'll leave.  Recently I met two cancer drug salesmen - all I said was I had had breast cancer (like the big boobs and curly hair didn't give it away), they apologized even before I got to complain - "Sorry, this is how the system works." Wonderful, we pay with our quality of life and the health care industry makes more money.  

I have had to fight my insurance company for benefits, even though I was a "never event" and they didn't have to pay for the initial surgery ($128k).  Surgical site, antibiotic resistant staph infection.  Mine was allegedly MRSA, but the Vancomycin nor the Zyvox didn't touch it.  I finally got Cubicin and after one week the pus disappeared from the incision.  It only took four months! 

I too have long-term SE, severe chemo brain, neuropathy of my right foot, and a compromised immune system.  Any one had the Swine Flu yet?  Knocked me down for ten days - everyone else - five.  I am in fear of losing my job and insurance - my cognitive skills and the ability to multitask are gone.  It takes me longer to do simple tasks and I get caught up in details that I never did before.  

I have had to jump through hoops to prove to my HR Dept. that everything that is wrong with me is all BC and/or MRSA related, either via chemo or the caustic antibiotics that were given to me to fight the infection.  I have contacted the FDA (like they aren't beholding to Big Pharm) and the CDC to find out the long-term effects of the antibiotics. So far, nothing.  

I did find about Nerve Regeneration through cancerlynx.com (Canada) and found out the shooting, stabbing pains were not a figment of my chemo brain - it is T1-2 nerve damage!  See if they ever tell you that!  My internist put me on Ritalen two weeks ago and I am calmer, however, fatigued.  Wonderful, I really am crazy - he said just human - but what else can be done?  I take a high grade fish oil, monavie, Vit B and Lecithin every day.  How do you ever get your brain or your immune system back?  I even see an acupuncturist for the regeneration pain!  We'll see if that works.  

If I had to do it over, I would have foregone chemo and gone another route.  I wouldn't stress so much about my job if I knew I could get insurance, but really, who will insure me now?  BC is now considered a chronic illness and the insurance industry is more interested in profits than us.  If we go to single-payer health - I will quit my job and work part time.  I think we should all have the same health insurance benefits that our congressmen do - don't you?  I was shocked when I presented to the hospital for implant placement (finally) preop and they wanted my deductible right then and now.  Thankfully I had just gotten paid so I had it, but went without for two weeks. 

I have three more procedures and get a new nipple next week.  I don't think it will ever end and the MRSA never leaves the body, so I have that to worry about too.

Through all of this I have never had an epiphany that life is wonderful and I am blessed every day that I am alive, the only thing I feel is more stupid.

   There are many angry posts on here and you have a right to feel this way, BUT even though we have side effects we have no way of knowing where we would be had we chosen not to do the chemo.  My onco tells me there are side effects with all of them.  I chose to quit before I hit the 24th treatment (what he had suggested) because I felt I had enough side effects with 22 and did not want to go any further since I have no way of knowing if these things will go away.  My scans did show improvement in every area especially my liver so the treatment was effective and I will probably always wonder if the results would have been even better had I gone on with the treatments.  Chemo at this point is the only choice for me as we have exhausted all of the oral hornomal treatments and the oral chemo we tried did not work for me.   I did very well on hormonal drugs for over 10 years with some side effects, but not horrible ones I couldn't live with, and they did all go away  Everyone is different in the way they react to medications and what works for one may not work for another.  There are some other topics on here where women are happy with the abraxane/avastin combo, but I just didn't want any more of it because of neuropathy. It was on these boards and through discussions with other women in the treatment room at my onco's office that I leaned the neuropathy could be permanant and that made the decision for me to stop my treatments much easier.   I had canula (?) inserted in my tear ducts this week in hopes that it will get rid of my constantly tearing eyes.  If the only other choice is just waiting for the cancer to take over, most people will choose some form of treatment.  However, I do agree that side effects are a big issue and do definitely affect quality of life and that patients should be informed about them in advance so this can enter into their decision..  It was only when I decided to stop the Abraxane and said something to my onco about having my GP as well as my orthopedic doctor trying to figure out what was causing my lower back pain that he said Well, you know one of the medications you were on causes back pain.......No, I did not know that and I was so shocked when he said that, I didn't even think to ask which one.  I am still hoping the neuropathy will improve and that one day my nails will go back to normal and my ankles and feet will stop swelling.  Am a bit anxious that my taste buds have not returned since it has been about 2 1/2 weeks now, but will give it more time before I start complaining about that.  After a break (he said I should not take a long one, several months is all) we are going to discuss what other treatments there are and what the SEs are before moving onto something else.  Believe me, I am all for quality and always have been, but at the same time do not feel it is time for me to give up and do not have any faith at all in asparagus diets, holistic treatments, etc, but then again that is just me.   It's a real Catch 22 and not a situation I would wish on my worst enemy and I am saying my prayers for all of us.  I am amazed and shocked by some of the horror stories i have read on these boards about what others have had to deal with and count my blessings that I have been Stage lV for as long as I have with minimal problems as compared to others and am still able to work and enjoy life.  Hope I did not make anyone mad by voicing my opinion.   I HATE chemo and always said I would never do it because I knew we were saving it as a last resort,  but sometimes when given the other alternative, we do what we can to stay alive.  

I'm still on vacation but when I can I drop here to read the posts...there have been so many, it is hard to digest everything, I am very glad that this thread has provoked an outpouring like this.  We need to know more of these private stories and I think the medical community needs to understand us better.

Ritalin for chemo brain?  Reallly?!!!  You know, I've felt very, very scatter brained since chemo and I notice I get so easily distracted from one thing to another, and I forget what I am doing.  So we have Attention Deficit Disorder?!!  Dang!  For years I struggled with a nephew who had a severe case of this and now I've got it!!  I am constantly losing things, I get so disorganized to easily and I make so much work for my husband who fusses over me, diligently tries to find things I lose (all the time), and never complains.

Is there reallly a recovery period?!!  Too bad it takes ten years!!!  I'm already 60 and I don't want to have to look forward to 70.

MARYBEE, so sorry to hear about your tear ducts...what an annoying problem that must be.  I had a cat with the same problem.  Adding lysine to her diet seems to help more than anything else.

KAJAN, I too had a choice between Femara and Tamoxifen.  I lasted about one week on Tamo (w/Effexor I think)..it was awful and I chose to take Femara instead, and go back to my beloved Prozac.  Much, much easier.  My friend Mena (who is stage IV now) has taken nearly every cancer drug there is and she recommended Femara way over Tamo.

Femara at first only made my ankles ache a little, and then only at night.  Now the bone aches seems worse, my energy level is also low.  But it's bearable..I still do a lot of walking and running and biking (my favorite).

Miz 

I can appreciate that no one wants to hear the long-term SE, we would probably go elsewhere.  After I was diagnosed, I did research, I read Dr. Love's breast book, I loved "Just Get Me Through This," but it did not prepare me for slamming into menopause in two days, nor the loss of my cognitive skills or the neuropathy.  I didn't think it would be that big of a deal.  Yes, I was wrong.  In my recent search, I have found various sites have urged taking Fish Oil and Gingko to reduce inflammation - I've been doing the Fish Oil and Lecithin, but I'll add Gingko if it will give me my cognitive skills back!  I just had my fourth acupuncture treatment for the nerve regeneration pain.  Today we treated the scar from the lat flap.  My entire cage hurts, but it will be better tomorrow.  You may want to consider it or even massage as an alternative.  I had no idea that my brain fog would get worse one year later; I drank water by the gallon during treatments - little good it did me.  

Miz, I read the SE's from both drugs and Femara scared the hell out of me.  To shut down my estrogen completely was just not an option.  Osteo runs in my family and I saw my aunt suffer from spinal compression fractures by standing up "wrong."   The idea of heart disease also deterred me - I still don't have my lungs back - every time I thought I was well enough to exercise, I've been sidelined.  That is the best medicine and before caner I worked out four or five times a week.  Now walking the three blocks to my office building can wind me.  I'm determined to get back to training, it is important, I just need the energy.

I am not allowed to say "cancer" or "chemo brain" any more - my husband, who has been wonderful throughout this whole medical disaster, is convinced that I am fine.  So, I have contacted a survivor's group and will tell you if that works!  I don't know what the new "normal" will be, I just want to be able to think and see clearly, be happy and feel good.  Is that too much to ask?

You know I would just love to have an honest opinion from my oncologist about my prognosis. He refuses to talk about it, just saying that anyone can get hit by a bus tomorrow and that I should go on and live my life.

Problem with that is that I can't relax. I worry. Would I worry more if I knew? I don't know but the uncertainty makes me tense. I'm exercising daily, taking my Femara, limiting my drinking to one or two a week, and eating healthfully. Yesterday I got a newsletter from WebMD saying that AIs are only 60% effective. That's not a figure I'd heard before. It sent me into an emotional tailspin.

Thanks hrf, your stats are similar to mine. Another friend with similar stats was told 20-25% chance of recurrence. I knew the stats aren't as great as I would like. It's hard because people assume that everyone has the most common, highly curable form. They all seem to know someone who had BC 20+ years ago and is fine. When I ask them what type/stage etc. of course they never know.

I'm not trying to draw extra attention or sympathy, but part of me still wants to point out to people that in many ways I'm always going to be in a fight for my life.

Thank you for the articles in the New York Times.  I tired to read both articles. The first one I managed to get through fairly well, although, I cannot tell you now what was said. I need to go back and reread it. The second article, I found very confusing.  I think that my brain was suffering overload. 

Reading comprehension, processing math, retention, and confusion with anything that is above about an 8th grade level, are very hard for me these days.  Sometimes I am surprised that I can write anything that makes sense. It is weird. I can still think and write, but I cannot always read and understand.  Somedays, I have had trouble counting.  I went out to dinner with friends and could not count accurately how many of us there were. I tried to tell the waitress what size table we needed and never got the number right. There were only about 7 of us.

As it is with these posts, I usually try to write them in MS Word. There I can check my spelling and grammar.  Then I cut and paste into here. It makes it very hard sometimes. I get so depressed because of it.

It also seems to be intermittent. It isn't something that happens the same way every time. My oncologist says I need a brain scan since she has never heard of chemo brain! WTF! I spend a lot of time fatigued and I think that not only is it a mix of the drugs but also because my mind gets tired.

Hope everyone is having a good day.

C

At the Cancer Centre I go to, they have changed the name from "chemo brain" to "brain fog" and they offer sessions to help people with it.