Chemo almost intolerable!

kristasplace

I've been laxing on my internet participation these last few weeks since my chemo experience has been worsening. I know it's probably expected, but my side effects are almost unbearable.

The treatments were going okay, i had the typical uncomfortable neuropathy and fatigue, but after my fifth full dose, i was at the point of wanting to give the whole thing up! The neuropathy and mucosis prevented me from being able to drink anything unless it was very hot, and then i could only sip it. I had to stop taking my oral medications. My hands were locking up too, it was weird. I was GRUMPY as all hell, and just miserable. I told my onc he was going to have to cut my dose, which is what he had been wanting to do, but i wouldn't let him. Suddenly he didn't seem so eager to lessen it. I had to insist, and he did.

The sixth treatment seemed much better until day two, when i got unplugged. Since then, i have felt sooooo awful. I'm so much more exhausted than ever, and generally feel like crap. I have no desire to do ANYTHING. It feels a lot like depression, but it isn't. Also, the mucosis and numbness of the mouth are miserable. I don't know if i should ask my doctor to lessen my dose even more. I feel like i shouldn't even be doing this if i'm not taking enough to kill the cancer. Yet i don't want to kill myself either? Am i being a complete baby? Are these side effects typical?

Many hugs,
Krista

jsabol

Hi Krista,
My heart goes out to you; I am one of the veterans on this board, but not as active as I have been in the past. I'm sorry that I don't know more about your staging and chemo combination, but it sounds like time for a serious sit down with your onc. My chemo was completed four years ago; I was stage III, one positive node. I only had 5FU (love that name!) and leucovorin, which was the "gold standard" at the time. Oxaliplatin was just completing trials, but my onc felt that the side effects could potentially outweigh the statistical benefits. Another option would have been to start with oxali, then stop if the side effects became too bad. I went with my oncs advice, and did not add oxali.
I felt like crap during my chemo; one of the oncs in the practice called my chemo "chemo lite" and I wanted to belt him. I never saw him again, my choice.
I could lie in bed, thinking about getting up for such a long time that I would fall asleep again. A description I read referred to feeling "velcro'd to the bed", which sure fit!
Listen to your body and talk with your team. Only you can be clear about what you are feeling, and your doc can help weigh the benefits/risks.
I am now hoping for another "all clear" from my latest scans; it was definitely worth it from this perspective, but that feeling was a long, long time in coming.
All the best, Judy

jenhopesprays

Hi Krista, So sorry this sucks so badly. Yes, this all sounds very normal. I am going through the same thing. I have been at it for about six months. I am currently doing a treatment and have one to go..typing away with my numb fingers.

Here is how I handle it. I plan to feel like crap for 5 days. I keep a tissue box next to my hang out spot and remove the mucosis that way. I had been vomiting (thank goodness that has stopped)....but I just know I am killing the uninvited cells in my body. I always have a pot of herbal tea next to me to keep my fluids flowing. I have friends over to keep my spirits up.

Did you read "Live Strong"? Remember how hard it was for him? You are not a light weight. This is tough stuff. Grumpy sounds fine to me. Tears sound normal too. My hands locked up too but it always goes away. Did I mention dry mouth? Serious fatigue?

Fatigue is very normal. Don't you just feel like there is ten times more gravitational pull where you are sitting? LOL. I cope by going with it. Napping as need and listening to the radio with eyes closed for hours on end.

I am not telling you what you should do about future treatments because only you can answer that. I am just telling you that your side effects are normal? Calcium and magnesium helped ease the neuropathy for me. I take tablets.

Fighting cancer is tough stuff. Just know you are not alone. I for one am doing it with you.

Big hugs,

Jennifer


Here is the info on calcium and magnesium:
http://www.revolutionhealth.com/blogs/heinzjosef/magnesium-and-calcium-14116

kristasplace

jenhopesprays said:

Hi Krista, So sorry this sucks so badly. Yes, this all sounds very normal. I am going through the same thing. I have been at it for about six months. I am currently doing a treatment and have one to go..typing away with my numb fingers.

Here is how I handle it. I plan to feel like crap for 5 days. I keep a tissue box next to my hang out spot and remove the mucosis that way. I had been vomiting (thank goodness that has stopped)....but I just know I am killing the uninvited cells in my body. I always have a pot of herbal tea next to me to keep my fluids flowing. I have friends over to keep my spirits up.

Did you read "Live Strong"? Remember how hard it was for him? You are not a light weight. This is tough stuff. Grumpy sounds fine to me. Tears sound normal too. My hands locked up too but it always goes away. Did I mention dry mouth? Serious fatigue?

Fatigue is very normal. Don't you just feel like there is ten times more gravitational pull where you are sitting? LOL. I cope by going with it. Napping as need and listening to the radio with eyes closed for hours on end.

I am not telling you what you should do about future treatments because only you can answer that. I am just telling you that your side effects are normal? Calcium and magnesium helped ease the neuropathy for me. I take tablets.

Fighting cancer is tough stuff. Just know you are not alone. I for one am doing it with you.

Big hugs,

Jennifer


Here is the info on calcium and magnesium:
http://www.revolutionhealth.com/blogs/heinzjosef/magnesium-and-calcium-14116

Thank you, Judy and Jennifer! I always feel better hearing that others are experiencing the same symptoms. Makes me feel like i'm really NOT going to die! I'm trying to do things that bring me joy, or bring me something joyful to look forward to. I have so many activities planned for when my chemo is done, and ileostomy reversed. Some of these activities can be done on my 'good days'. Unfortunately, my good days are lessening because i spend myself completely when i do have a good day. My Mother thinks that is why my side effects are getting worse. I played so hard in the pool a few weeks ago, i was sick for a long time afterwards, and my stoma hurt probably from the chlorinated pool.

I know i shouldn't be doing these things, but i'm tired of missing out on life. I am very gratful that i have good days at all! Today feels like one of those days, but i'm not going to over do it. Maybe just a small trip to the museum.

Judy, i am so happy that you are cancer free! Does your doc consider you 'cured' at the five year mark?

Jennifer, your symptoms are a lot like mine, and you're almost finished! You make it possible for me to envision that day! I'm soooo looking forward to it.

Many hugs to you both!
Krista

Hanac

Hi Krista,

I'm sorry you are going through this...CANCER SUCKS! WHen I was going through my treatment the Onc gave me Decadron to deal with the side effects. It really worked...It is a steroid, so I got as big as a house...but I could hit a baseball out of the park LOL!

I had infusion every other week for a year. I truly believe I could not have done it, but for the Decadron. Ask your Onc about it.

Love Ya,

Hana

libris

My doctor has recently prescribed 4 days of IV fluids starting two days after chemo. A visiting nurse came the 1st time to show me how to do it, now they just leave my port accessed after treatment and drop the stuff off for me. I can't tell you what a difference it has made. The fact that you find it so difficult to drink suggests that you may be suffering dehydration in addition to the other chemo affects. It may be worth talking to your doctor about this.

Best of luck!

dn220

Bless your heart. I hate to hear you are having such a terrible time. My chemo is kicking my **** too but in different ways than you. The neuropathy has improved but of course they have held my treatments 2 times now due to diarrhea and weight loss and 1 time for dehydration. I get decadron with every treatment and it makes me feel so nervous I end up taking xanax to get thru that part too. I dont have too much trouble with the mucous but I do get strangled very easily. The sensitivity to cold goes away about day 6 after treatment. My biggest problem is the nausea and diarrhea. I dont want to eat anything and have lost 31 pounds since treatment started. Everything either tastes horrible or gives me really bad stomach troubles. They put me on GI cocktail and that seems to help. They have decreased my meds as well and I felt just as u do about it but the doc told me not to fel that way, cuz it was expected that several decreases, hold or changes were a possibilty. All i know is I want to get it over with. But 5 more months to go and everytime they postpone a treatment adds more time to me. Hang in there and I'm thinking of you and sending good vibes your way to be able to handle it.
Hugs,
Deb

pamness

I had a horrible time with chemo - stage IIIA, leukovorin, 5FU and oxaliplatin - I only finished 5 rounds of oxaliplatin and it was lowered every round. I find it hard to believe you are being subjected to such misery unless you are stage IV. They don't know how much chemo you need to have it be effective, no one wants to volunteer for the "less chemo study." I wanted to keep going and my oncologist said "no" to the ongoing oxaliplatin. I finished the 5FU. I think you should have a very frank talk with your oncologist. Mine stood fast and said no more. I was exhausted, felt like crap, had numbness in my fingers and toes. I lost 45 lbs (20 was great) and was constantly dehydrated. I don't know your actual specifics, but there is some point where they should cut back. I don't know what meds they have you on - but for me the magic combination was amend - for three days, decadron for 3 days. zolfran for break through nausea, compazine next for nausea and attivan. I also had trouble with constipation and diahrrea - the combination there was miralax and immmodium depending what was going on. You might find you really have to push for the meds. I am now almost one year ned. Advocate for yourself. I hope you start to feel better. Are you at a major med. center?

Pam

rmap59

Hi Krista,
I am soo sorry you feel this way. It brings back some bad memories for me. I finished Dec. 11th of last year. It was the hardest thing I have ever done. Things that helped me were my Mom taking care of me, accupunture, lots of fluids(talk to your onc about IV fluids after the chemo), prayer, listening to soothing music, walks in the woods even if I felt awful always made me feel better, and the fact that it wasnt forever and I knew it was helping me stay cancer free. I would hear my surgeons voice over and over in my head saying "we are talking cure here". Have a heart to heart with your onc because I know there are meds and ways they can make you more comfortable. Also dont beat yourself up for the way you feel, it is normal. I was velcro'd to the bed on most days too. Thank God I had a job that I could go to whenever I felt like it.
Prayers to you, Robin

lfondots63

Hi Krista,

I guess I'm one of the semi oldies?? This December 20th (my birthday) will be 3 yrs since dx. I'm so sorry that you are having so many problems but yes we have all gone through the same types of symptoms in varying degrees. I'm hoping that you have told your onc and the chemo nurses about all of them. They are both a wealth of knowledge. I agree with the others that you need to be getting more liquids somehow. That would worry me. I did Folfox with the oxiplatin and it sucks. I still have neuropathy in my feel and some in my legs. Hands are fine now. I found that just getting outside to enjoy the sun even if I was just sitting in it helped my mood and how I felt. A little walk outside helped me too. Sitting around the house was so depressing. Do as much as you can and understand that the fatigue is cumulative. It gets worse with each treatment. How many treatments do you have left? I marked the date on the calendar and like you had things planned for when I was done. I even took a break in my treatments and went down the shore for a week. That helped me tremendously. Felt refreshed and ready to keep going until the end. Tell your mom that doing things helps you continue on with the treatments. She is just worried about you like any mother will be. HUGS and sending good vibes your way.

Lisa F.

jenalynet

Hi,
I'm sorry that you are having a tough time with the treatments right now. I will keep you in my thoughts and prayers that things go easier for you. Hugs, Audrey.

Moesimo

I only received 4 out of 12 of my post op chemo. I had such diarrhea I had to be hospitalized. And I received only 5 FU and leukovorin. That was 5 years ago and i am still NED.

Hang in there it does get better.

Maureen