Mental side effects of chemotherapy - not doing too well

Nighthaven

Hey everyone.

Guy here. I had my first infusion last Wednesday of Herceptin, Taxotere and Carboplatin. For the next four days I reeled with some very bad side effects. I don’t even remember last Thursday at all, Friday was nothing but me feeling weak, melancholy and sad, and both Saturday and Sunday I was in excruciating pain from my bones and joints, likely from the Neulasta.

However, beyond all of that I feel that the worst of it has manifested within the past few days. I am not sleeping very well and am suffering from incredibly crippling nightmares that make me wake up in tears and just flat out mental exhaustion and weakness. I feel detached from reality many parts of the day now and I am just flat out tired of it all. I don’t know how much longer I can take this before I am nothing but a broken shell of a man. I am suffering from bouts of hopelessness and despair. I know what depression feels like but this feeling I have now is unlike any depressed mood I have ever been through or felt before. I am just feeling like my life is taking a huge downward spiral despite nothing like that happening in reality. I am terrified to have to go back for any further infusions if this hopelessness and fear is only to intensify. I already have epilepsy so I am extremely concerned about being in control of my body but now I feel like I’ve lost all control of it.

I just can’t do this treatment anymore if this mood of mine is the result.

Has anyone else gone through the same sort of mental torment I am going through? What are my options? What can I do? Anything at all? I’ve relied on my family and friends for support but now I am not sure if that is enough.

Thank you for reading.

Moderators

Nighthaven,

We're so very sorry to hear you're experiencing these awful side effects. We're sure you're not alone with what you're going through, and someone will be by shortly to weigh in with their experiences and advice.

Have you brought your experience to the attention of your doctor? Perhaps he/she will be able to try another chemo combo that will be easier on you. Or, they may have heard of similar experiences and could have some advice -- perhaps it will get better after one or two infusions, as your body gets used to the medicine.

Regardless, we're all here for you and we hope you find some solutions soon so that you can feel better!

Sending gentle hugs,

--The Mods

Wised

Hi nighthaven, I'm so sorry that you are going through this. I did not have to do chemotherapy for breast cancer, but I did have it for colon cancer three years ago. One of the drugs for colon cancer is oxalaplatin which caused me to feel seriously mentally, physically, and emotionally depressed for at least four or five days during nadir. I felt as though this drug took me to the death's door and dropped me off there leaving me to crawl my way back to life. There were times I didn't know if I was going to make it back. I tried to talk to my doctor's about it but they said it wasn't a common side effect. Now, I have dealt with anxiety for many many years oh, but this was the first time that I dealt with true depression. The other thing I had to deal with was a pretty strong case of PTSD. If you are having nightmares, you might talk to your doctor about this because it's pretty common to have a diagnosis of PTSD after such a shocking diagnosis especially since the treatment for breast cancer can be so brutal.

Beesy_The_Other_One

Nighthaven,

I have thought about you and wondered how you were doing--you and I were in contact shortly after your surgery. I looked for you at one point to check on you and saw that you hadn't signed on here, so I'm glad to have the opportunity to touch base with you. I'm sorry to hear you're having a rough time. I think you need to tell your doctor how you are feeling. You are on powerful drugs and drugs you need. But maybe these drugs are really affecting you when others would not do the same thing? Every time I go to my cancer center, they ask me questions about how I'm doing--they want to know if I'm not doing well. I believe your doctor would want to know and he or she would help.

Beesy

Alicethecat2

Hello Nighthaven

I'm so sorry you're going through this. It really is a challenge for anybody.

Do you have the number of the chemotherapy ward to phone 24x7 if you don't feel well in any way, especially after your first chemotherapy dose? I was given this number and it helped.

Other options:

Is it possible you could phone your nurse navigator or breastcare nurse and tell him or her about your symptoms and how it is making you feel?

Could you request an appointment with your onc and ask about a dose reduction (I had to do this) or different regimen?

Could you request an appointment with your epilepsy specialist, maybe before you see your onc, to get his or her view on this?

Sorry this list is so practical.

Alice, a seven-year survivor

moth

definitely talk to your doctors. This could be side effects from the chemo drugs or from some of the supportive medications. Are you receiving steroids during treatment? They can cause very strange symptoms, esp a couple days after they're stopped. Whatever it is, there has to be something that can be done - just reach out, make the phone call to your oncologist's office and explain the symptoms. Many people end up having anti-anxiety medications & sleeping meds added to their treatment protocol for the duration of treatment.

You can do this, one step at a time. Remember, the treatment is not forever, it's just a few months, to save your life. Yes it's hard but you're stronger. You can do this.

erin_t

Nighthaven, I too suddenly dropped into severe depression /anxiety after starting taxol (paclitaxel). I've read a few places that some people have that reaction though hard to know whether it's that or some other part of the cancer experience. My life has been pretty much trashed since, though after 4 weeks on Lexapro I'm starting to see some improvement.

So you're not alone. Thinking of you.

CBK

Nighthaven-

I had a very tough time on AC and Taxol/ mentally As Moth mentions I believe steroids had a huge effect on my mood. I would not be able to sleep for a few days after infusion and then go to a very dark place when I came off steroid crash. I know my MO cut my steroids in half of what she would give a “normal person” , what’s normal in all of this right? But this could be a factor for sure if they are administering them.

You should not be in excruciating pain from Neulasta; at least I wasn’t. I’m sure they gave you some options to counteract that pain, right?

Make sure you express this to all of the medical professionals taking care of you.

Do you have a cancer support group at your hospital? Because it’s hard for just friends and family to understand if they haven’t been through this. I remember going to group at my hospital very early on in Chemotherapy and it helping me tremendously.

Keep talking and let us know how you are doing.

My experience was things progressively got better as I went through chemo. I had some very fatigued days toward the end, but the fear subsided and I saw light. This is what I wish for you!!

fredntan

OMG yes I have felt all those things. and somehow I am still here. I am your MBC sister

I finally started a depression med during my first rodeo. Its time I got a different one for me now

The first time I had chemo--it felt like a heavy blanket was holding me down. the fatique

and then the steroids!! Argghhh. It does mess with your mind.

My NP taught me to breathe...I was so anxiety ridden when I went to her office. 3 nice slow breaths in and out

repeat as needed. They did give you antianxiety meds? I hide mine now. my daughters best friend stole a bunch of mine. he tried to kill himself. fortunatly he failed at killing himself

My husband was the only one truelly there for me. he made me not look at the whole picture. .I just looked at every day or week. I took walks with Tom Petty-listened to the album with the song learning to fly

MCBaker

My onco gave me a prescription for clonazepam, one at bedtime and one if I wake up and can't go back to sleep. I was having bad nightmares from horrific experiences in the past, problem resolved. I am generally doing well. I have been on Effexor for years, and really don't think an increase would be a solution. I need individual counseling, and have an appointment May 1, and sought out a counselor not covered by insurance who does charity work to fill the gap. However, the mind-stifling cloud I experienced a few weeks ago has dissipated, but I am still going to go through with it.

Take from my experiences as you will.

Pinky24

Nighthaven - I hope you are able to find some relief. Does your cancer center have a psychologist? Many people need psych services during cancer treatment. The disease and the treatment are hugely traumatic. I’m already on a pretty high dose of antidepressant, but I have struggled during the course of my treatment. I had crazy vivid dreams during AC chemo, which I attributed to the Neulasta. I have also had a lot of trouble sleeping, which affects my mood. There’s no doubt about it, cancer sucks.Hang in there, reach out for professional help, and know that there is a light at the end of the tunnel.

Cowgirl13

Nighthaven, I felt very much like you are feeling now. I was also on Herceptin, Carboplatin and Taxotere. After telling my oncologist how truly awful I felt, he reduced the amount of steroids I was being given. That really, really helped. What also helped was taking Ativan so that I could sleep. Ativan also has anti-nausea properties. It really helped reducing the steroids and I never really had a problem going forward after that although I was taking anti-depressants. You will feel better. Also, you might want to check in with our Triple Positive thread.