Urgent - my wife wants me to quit chemo but I want to continue

Scarlett1

I am going through my 4th cancer diagnosis. My first was in 1997 with breast cancer then 2003 uterine and Fallopian cancers now breast cancer again. Going through chemo is not new for me. This is my third go around. It is hard this time, however. Really hard.... I have the usual chemo brain, nausea, diarrhea, fatigue... etc. This time, however, I am having really weird mental issues. At one point I did not know what my insulin was for nor could I remember what to do with my glucometer. I had episodes of sleep walking and my wife found me on the phone one night trying to talk on the answer machine to folks who had left messages. Of course I am 21 years older now than the first time I had chemo but my Dr feels these are extreme reactions and he told us they are NOT common. He canceled my last chemo and scheduled me for a PET scan (which I will have Monday...). I suppose he is looking for more cancer.

My oncologist is new to me. The first time I saw him, my tumor markers were elevated and he did a battery of tests and found breast cancer (a different cancer from my breast cancer years ago). It is not like we have a relationship where I can sit down and have a heart to heart talk with him about what is going on. The cancer center has a social worker that I may try to talk with. My internist is out of town which is a shame cause I could talk comfortably with him.

If I continue with chemo it will be hard as my wife has to work and I probably should not be left alone for at least a few days after chemo... but I think I can get home care for a few days around my infusion times through my insurance. I have 5 more infusions left and I am really wanting to get all my chemo. I have battled this thing for so long that giving up just seems totally wrong. I am not ready to die... and I still have plenty of fight left in me...

My wife has a new thing that she says pretty frequently this time around. She says, "You do not have cancer. It was removed surgically. The chemo is not really needed." I think it just kills her to see me go through all of the issues this time around. She has said what good would surviving cancer again do for me if I lose my mind. We have been together for almost 26 years. I do not want her to be in the position of having to take care of me but stopping chemo just seems so wrong to me.

Has anyone out there gone through something like this? Does anyone have feedback on this? Feedback is appreciated.

ShetlandPony

Why not ask your onc about using a different chemo? One in a different class that may not cause the same mental side effects.

Icietla

I am so sorry you are having such a hard time, Scarlett1. Please do speak with your Doctor and the Social Worker about what all is going on with you and your need for Home Health Care services in connection with and following your treatments. The sleepwalking may be from medication or from stress, but it should be investigated. I am thinking what ShetlandPony thinks -- that perhaps your Chemo medicine can be changed to something not so hard on you.

The ones who love us feel helpless about our suffering. The things your wife has been saying, though, are probably very discouraging and very bad for your spirits. Repetition of that stuff might drill it into your own thinking. I wish for you that she would be only supportive instead. Words are very powerful.

I have brain damage from another cause, and I am physically and mentally *differently-abled.* I am aware of all the difference, of all I have lost. Still, it is nobody's place but mine to make judgments about the quality of my life, and it is nobody's place but yours to make judgments about the quality of your life. We are still complete persons. And our lives are all we really have in this world.

((Hugs))

SillyMe0114

Hi Scarlett,

I am going through some difficult things with my Dad, after the 7th of a planned 12 rounds of docetaxol chemotherapy. He was a brilliant research scientist and engineer, and musician. He was struggling a little with cognitive issues after the first few rounds, but was still able to function enough to have a relatively good quality of life until number 7. With the 7th round, he has moments where he seems to be sort of ok. But mostly he is not. His 7th dose was was December 29, 2016. One week later he crashed, mentally and physically. The cognitive troubles cause him to not remember his new physical limitations, and he has suffered numerous falls, leaving him severely battered and bruised all over, with other smaller injuries. He has spent most of this year in the acute care hospital and in acouple of physical and occupational rehab hospitals. It has been a set of awful experiences for him, my Mom, and I.

My Dad has stage IV prostate cancer, with extensive bone metastasis the full length of his spine, pelvis, and pelvic lymph nodes. His treatments have been very similar to breast cancer, including hormonal treatment, docetaxol chemotherapy, and infusion meds for bones.

The cognitive disfunction is the worst part of this nightmare for my Mom and I. We are with him every day in shifts to make sure he is ok. And it has been a nightmare. It went from something he could live with to something that is making his life unbearable for him, even though he sometimes is foggy enough not to remember this. His quality of life is pretty awful. There are times when I see the emotion in his face as he struggles, so I know he is aware.

My reason for posting this is not to scare you but to let you know that sometimes the change between being ok and not with regard to cognitive disfunction can happen as quickly as having that one more chemotherapy round. Because each individual is different, the treating doctors and nurses can't tell who that will be. I've through chemotherapy twice myself.

With my Dad, I am hoping he can improve enough to come home, and be taken care of by my Mom, myself, and some help from a home care aide.

Your wife is afraid, and with good reason. Your symptoms sound scary to me already.

I hope there may be a less severe treatment option for you.

Hugs to you,

Lilly

Meow13

Definitely your oncologist needs to understand what you are going through. They are the experts with these chemo drugs and should be monitoring the effects. Yes you want to kill cancer cells but you want to preserve your QOL too.

gracie22

Sorry, Scarlett--such scary side effects. Since you mention a glucometer, i assume you have diabetes and hope that is being carefully monitored. Many people get steroids as part of the chemo pre meds, and they make control of blood glucose very difficult. A meeting with the oncologist is definitely needed to discuss the bottom line benefit of chemo in preventing recurrence in view of your side effects. The PET is a good idea. If no other cancer is found, you may want to reconsider things, whether that means stopping chemo or switching to a different type of drug. It is not giving up at all to reassess treatment in view of what you are experiencing.

Traveltext

IMO, your wife needs to get herself up to speed with the medical treatments you require this time around. However, at the end of the day, it is your decision, and your decision alone,as to the treatment you should take.

Scarlett1

UPDATE: I met with my oncologist, his nurse, the social worker and my wife to discuss "mental issues". We decided to skip the steroids with the next infusion - which we did and it all went beautifully! I had quite a reaction to Neulasta last time so we are going to skip that as well and maybe take Neupogen if my blood counts require it. I am now done with 2 of 6 chemo trestments with next one coming up on May 16th. Thanks for all yaw'lls input and kind wishes.

ShetlandPony

Very good to have such a team meeting with onc, nurse, social worker, and family. Good problem-solving.