Some straight talk, please

Roxanna I'm sorry to hear your diagnosis but don't give up. I have mets in my lungs and I don't know if it will make you feel better but I have been doing fine since January. There are other women on here that have mets to their lungs that have been around a lot longer. I am not however triple negative. I agree with Heidi about the second opinion.

please keep us updated.Hopefully someone who is in your exact diagnosis will come on soon with advice pertaining to your particular diagnosis.

Hi Roxanna,

Even though I don't have lung mets, I am currently on doxirubicon. I am going on 3 months now, and my quality of life is good. I am losing my hair and I do apply aquafor twice a day to my hands and feet, but I am doing most everything I want to do. I play pickleball, walk the dog, crochet, garden, etc.

I know everyone is different and you won't know how your body responds until you are on it, but I wanted to give you another perspective.

Oh, by the way, drink LOTS of water.

Hang in there, one minute, one hour, one day, making each day the best day you can make it.

Lung mets also. I have been on some sort of chemo for the last TEN YEARS. Some were awful, some not so much. I am carefully monitored so that my energy level (and therefore quality of life) rebounds between treatments. It's a roller coaster, and not ideal, but seems a lot better than what your doctor is saying.

Nobody can offer you insight into what is or isn't true. We can't see into your cancer to tell you.

What I am going to do is offer a--probably wildly unpopular--opinion, based on my own cancer, which now involves lung mets. Keep in mind that my cancer can grow at the rate of about 1cm/week, once it hits the cm. size range. I have two lesions, a 10cm on and a 1cm one. To spare you scrolling, I have a HER2+ squamous cell metaplastic cancer. I call it devil cancer for short. It is chemo resistant. TCHP barely dented it, and only for about a month.

I was disabled going into it, which was a huge disadvantage, and the short version was that TCHP put me in the hospital for two weeks, radiation came with a pile of unexpected side effects (I'm actually allergic to Silvadene cream), doing surgery too soon after radiation has cost me a lot of range of motion in my left arm, and Kadcyla was tolerable for about three months. It was genuinely effective for one.

I quit Kadcyla after the last infusion left me with weeks of 103F+ temps and barely able to leave my bed. I now have a chronic cough, one that can leave me vomiting and wetting myself, that nobody understands where it's coming from. If I bend in certain ways, I feel like I'm being choked, and my cancer doesn't explain it. I have neuropathy in my feet, from taxol and an antibiotic. The fatigue is such that I'm housebound unless someone drives me, and I must use a walker in the house for safety. I have low hemoglobin, and tachycardia. I've measured heart rates of 150 bpm. My blood ox is holding up, but my body is working very hard for that. My immune system is out of control, with elevated white cells and lymphocytes, and constant, cyclical fevers. We have no idea what it's after, but it may well have been the treatment itself. Prednisone is holding off symptoms of my disability and helping with inflammation in my lungs. What it's not doing is fixing my poor appetite, I'm barely able to maintain my weight, much less gain anything. I sleep a lot. The immobility has undone three years of physical therapy, so now I also have musculoskeletal pain that I don't dare treat because of the fatigue side effects of my muscle relaxants. I'm afraid I won't be safe.

I just want you to know where things are for me.

My doc wants to try Lapatinib and Xeloda. Part of me wants to see if that will actually damage the devil cancer, since nothing else has, but I will have to be admitted, because my mother and I cannot handle chemo diarrhea or any increased fatigue on our own. I won't make it to the bathroom, even though it's right next to my bed, because I cannot move that fast without risking passing out, and if I get any more tired, I will soil the bed for another reason.

My son is drawing a line in the sand. He says I have suffered enough. He says that if they can't guarantee improvement in my quality of life, they need to stop. Keep in mind that we're quite close; he's 23 and we still live together. There's no inheritance for him, not even a car, never mind a house. There's no extrinsic motive for him to want me dead. He just wants the suffering to stop.

He's not wrong. I can't sew, I can't compose, I can't write. I can't cook properly. I can't even load the dishwasher. Most video games are now way above my cognitive capabilities. Even books are becoming too difficult to keep track of. My life revolves around food, sleep, and laundry--oh, I forgot the night sweats. I wake up every few hours drenched. I've learned to sleep in a heavy terry robe with a towel around my legs and head, to protect my bedclothes, but all that must be tossed into the dryer when I swap it out, because it cannot air dry in time. Then it all has to be washed the next day. I sleep like there's a newborn in the house, which is probably why I can't concentrate.

Is it quitting for me to turn down further treatment? I don't believe so. When we got the pathology report on my tumor, and knew that it was, I made a decision that I would not live in fear of death. I would not destroy myself running from it. I would not look at cancer as a battle I had to try to win at all costs, but just another chronic disease.

So now, when I'm on the edge of becoming a complete invalid, do I grab at the last straw? Do I assume that this will be different, that I will get good results without horrible side effects, which has never before happened?

My son has a very good question: What is life, and when does life end? And how do we deal with it when the end is on the horizon? Do we peel the bandage off slowly, or rip it away? Do I risk side effects that could put me in an inpatient facility for the rest of my life? Do I choose to probably not see out the summer?

Do I go running to another doctor? Is there one who has experience with my type of cancer? Should I throw every little bit of energy I have at eking out a few more months, regardless of what condition I'm in?

Or do I turn and face the unknown, as I am now?

Truth is, I'm not strong enough for more treatment, not now. Maybe in a few weeks, we could risk something without having to admit me, but would it really improve my quality of life? It's actually possible that I might not be able to afford it. The billing is different for pills than for infusions.

I agree with my son. Any treatment offered that doesn't improve my quality of life isn't going to be taken, even if it has the potential to prolong my life. I can batter at my body until it's a lump in a bed, trying to win some kind of battle that isn't really a battle at all, or I can make the most of what I have left until my time is up.

It's an individual decision. No one can make it for you. But I think this "Never give up!" attitude, while it can inspire some, can be damaging to others. It can inspire bad decisions as well as good ones. It can shorten lives as well as extend them, or extend them in such a way as to make them no longer identifiable as life.

This is not me telling you what to do. This is me saying that none of us can do that. You have to decide what it means to be alive with this cancer, and take that path that leads you there. It might be a second opinion. It might be the offered treatment. It might be doing nothing and enjoying what time you have left. It may be an option I'm not thinking of.

But whatever you do, never let anyone tell you you're a quitter. Never let anyone make you feel bad about living life on your own terms. Never let fear rule your decision-making. I did that once, with my last Kadcyla infusion, and I'm still paying for it, but on a heavier note, fear, especially fear of death, contorts our thinking and eats at our hearts. My genuine advice? Do your best to make your decision with a clean heart.

Jeeze, I'm long-winded!

Roxanna, one question - were you offered Doxil (liposomal doxorubicin)? If so, this is not in the same league as standard doxorubicin (the red devil/Adriamycin). I have taken both. Doxil has minimal side effects and is very tolerable. I just had my second round (administered every 4 weeks)and feel amazing. Such an improvement from the Abraxane I was taking (which is also a relatively mild chemo). No hair loss, no extreme nausea or fatigue. With the liposomal formulation of Doxil, the drug maker has figured out how to deliver the med directly to the tumor with minimal collateral damage to healthy tissue.

Hi Jennifer,

I have that doctor already. I was referred to the one company in town that does in-home palliative care, and they sent Nurse Rached, which put us all off of using them. I am, however, very happy with my palliative care team, even if I do have to be rolled out to the car to see them. What we cannot do is combine hospice and chemo, even palliative chemo. My insurance says one or the other, not both.

Problem is, this is stuff nobody knows how to fix. My throat and cough are a mystery. There's no sign of infection, but it keeps getting worse and worse. It's a pressure problem, not a pain problem in the usual sore throat sense, and painkillers don't stop a productive cough in any case. We've undone three years of physical therapy, and you can't fix that with painkillers, either. I must take blood-thinners, which eliminates NSAIDS, which would help. 10 mg of prednisone is actually working reasonably well for everything inflammation-related, including my cancer-riddled lungs, but I have no appetite, bone-crushing fatigue that nothing seems to dent, not even the pred, and intermittent fevers that come and go throughout the day that nobody has any idea where they're coming from or what they're trying to do. They've run every lab known to man, and I recently went through what was essentially an antibiotic nuke, and nothing happened. Palliative care is doing their best, but neither they nor anybody else has the slightest idea what they're dealing with.

One of my radiation techs described my cancer as winning the lottery in reverse, over and over and over. At every stage, including radiation and surgery, we go one step forward and two steps back.

I am not going to die in six months if we stop treatment now. I'll be lucky to have six weeks. Squamous cell metaplastic cancers are very aggressive, my cancer also makes clear cells, which are very aggressive, and I'm solidly HER2+. There is no pressure on the cancer now, which means that in six weeks, the 10cm tumor will be 16cm+/- and encroaching on my heart. My heart rate is also not doing so well, never under 112 resting and as high as 151 when I've been moving around, so I'm probably also a heart attack risk. There's also the bizarre behavior of my immune system. Depending on what it's attacking, and my own organs are not off limits, it could also kill me. I may also have an infection somewhere that has hidden from the tests and meds, which again, could kill me. It's amazing I've made it a year with this.

To be honest, it's frustrating to me when people are like, "Find another doctor!" Where? What doctors out there have access to medicine my own doc doesn't have? Where's the doctor who has treated a cancer like mine successfully? Or at all? Googling my cancer got me nothing, not even a case study, although maybe I didn't dig far enough. My doc is meticulous with my case, taking it to the tumor board every time she has a major decision to make, and consulting with her office-mate regularly, who is a medical journal addict, to see what he knows. I've checked at every stage, and she's doing exactly what anyone else would do. It's just not working, and it's not her fault.

Not all of us survive. That's just how it goes. It's one of the reasons I don't come here often. For someone whose cancer is rare, aggressive, and inevitably deadly, this is not always a comfortable place. That's why I emphasized in my original post here that encouragement to chase after every treatment rainbow may not be the best advice. It's possible to end up an inert body in a bed that way, without having had a chance to enjoy what's left of your life.

It's also possible to run out of treatments here and spend your children's inheritance at the quack clinics in Germany and Mexico. Going through every possible option in a desperate search for time is not always wise, and not always safe.

My son is great. He has been making a point of spending time with me, even though he's working his way through engineering school. This last year has been very special because of it. He's also right in that my quality of life has deteriorated badly, and for very little payoff. Chemo and targeted therapies destroy my body without doing more than slowing the cancer down slightly, and I think my son asking if Round 3 makes any sense is a reasonable question.

And that's part of why I'm not sure I want to spend any more time chasing rainbows in hopes of a few extra months, which is all I'm likely to get even if we try the new thing. I would like to spend what time I have left with him, and a few others, too. Maybe, because this is pills, I'll try it. I can just stop taking it, but I will stop much sooner than usual this time. I'm not going to tough this one out.

Miss Rosie,

I agree with you. As much as having breast cancer is awful, it's a well researched cancer with a butt load of therapies. It's crazy that I've been doing treatment for 6 years and am still here. Most Stage 4 cancers don't get to even imagine that.

You do have an aggressive (devil) cancer. And it has been pretty non-responsive. That. Just. Sucks. You are incredibly brave, and incredibly pragmatic. I understand your "What Other Doctor" position. I'm in a small town, and we have three oncologists, all in the same practice. I could drive to a bigger city, but - in this day and age - the bigger city doesn't offer increased standard of care, so why would I put myself through that?

I was re-reading your posts, and is the mass near your heart responsible for the feeling of choking when you bend certain ways? I could envision tracheal compression. And, given your cardiac concerns, you probably aren't a candidate for ritalin to address the fatigue, but it might bear asking. Do you have access to medical marijuana? Given your heart rate and lack of appetite, it might help both. I'd rather be high than feel like shit, though to be honest, the two times in my life I've been high, I don't think I super loved it.

Xeloda has a good track record, even outside of breast cancer, and it is easy to administer, so giving it a try seems a logical choice. I loved the stuff, and didn't develop hand/foot problems until almost a year in.

I'm with you. When that time comes, I'm not going to impoverish my family with arcane treatments. Or, seek the Holy Grail of treatments. I'll fight like heck till that time, but when I get the "talk", it'll be time to wrap up this life and prepare for what is to come, in a very secular way.

Fully cancer saluting you,

Jennifer

Just a note to Roxanna, whose thread I seem to have inadvertently hijacked:

It is possible to end up like me, and you're not wrong to fear that. It's not fun. But there are a lot of other possibilities out there. You know your resources and your cancer best, so the decision is ultimately up to you. I should also add that I'm a rare case. Very few people end up in this kind of awful condition. People can live, and live well, with Stage IV cancer for years.

It might look like an assortment of bad decisions. Cancer treatment can be like that. But also know that you can change your mind. If you try a treatment and the side effects are unmanageable, you can do something else.

What links help with doing your own risk assessment to determine if the planned treatment vs not having it at age 61 with chronic joint issues and memory problems and other things that are starting to go at my age?

I want to know my odds before going forward with the cure plan. Any good sources.

Kelly, there are many treatments available for her2+. I'm negative so I can't speak from experience. I was just diagnosed in Jan with bone and liver mets. I had the same questions. I said I'd try the treatment plan and I'm glad I did. I was so ill, very near death at diagnosis and sometimes I didn't care if I lived. I knew I could stop treatment at any time if it was awful. It was all tolerable and I'm glad I had it.

Edited to add that I know this disease can change fast and I'm not close to NEAD so I'll have to evaluate any new treatments as they come along.