The Colon Club

I think you expressed what many of us are truly thinking in those alone moments when it’s just us and the cancer. I just finished round 5 or FulFox. Round 2 and 3 were very tough. They started me on Neulasta and took me off all BP meds ( heart rate dropped!) round 4 and 5 were not bad. As far as the pump- they started me out with the pump on 24/7 for 30 days. I’d get a new cartridge every two weeks so the 48 hour pump is ok with me. I also have depression. Please make sure your meds are adequate. I take Lexapro and Buspar plus Trazadone for sleep cycle. Hang in there. I’m proof that a bad round doesn’t mean the next one will be bad, too.

I had x8 folfox treatments, then neuropathy in the hands and feet where starting to get severe and was annoying, however I pushed through. Im abit more then a year out now, and my hands are all but normal again, and my feet are about 80% better, but still lingering numbness especially on cold morning, however ive learnt to live with the feeling, and is quite normal. I threw everything at this, I didn't want any regrets.

LisaB8 wrote:I think you expressed what many of us are truly thinking in those alone moments when it’s just us and the cancer. I just finished round 5 or FulFox. Round 2 and 3 were very tough. They started me on Neulasta and took me off all BP meds ( heart rate dropped!) round 4 and 5 were not bad. As far as the pump- they started me out with the pump on 24/7 for 30 days. I’d get a new cartridge every two weeks so the 48 hour pump is ok with me. I also have depression. Please make sure your meds are adequate. I take Lexapro and Buspar plus Trazadone for sleep cycle. Hang in there. I’m proof that a bad round doesn’t mean the next one will be bad, too.

Thank you LisaB8, I appreciate your support. I didn't even realize they do a 30 day pump, you're right 48 hours is a heck of a lot better in comparison. I'm not on any meds for depression at the moment but am considering it (although am scared of more side effects!), and was also going to ask them if there is anything else I can maybe take for sleep. Thank you again for you encouragement.

Swirdfish wrote:I had x8 folfox treatments, then neuropathy in the hands and feet where starting to get severe and was annoying, however I pushed through. Im abit more then a year out now, and my hands are all but normal again, and my feet are about 80% better, but still lingering numbness especially on cold morning, however ive learnt to live with the feeling, and is quite normal. I threw everything at this, I didn't want any regrets.

Swirdfish I'm so glad your neuropathy has subsided, hopefully it goes away fully in time. I hear you about not wanting any regrets, I was all set to go all out until treatment started and hit me like a ton of bricks. But I will keep on fighting and just make sure to tell my doctors everything that's happening and how it's affecting me.

VeggieLvr wrote:

LisaB8 wrote:I think you expressed what many of us are truly thinking in those alone moments when it’s just us and the cancer. I just finished round 5 or FulFox. Round 2 and 3 were very tough. They started me on Neulasta and took me off all BP meds ( heart rate dropped!) round 4 and 5 were not bad. As far as the pump- they started me out with the pump on 24/7 for 30 days. I’d get a new cartridge every two weeks so the 48 hour pump is ok with me. I also have depression. Please make sure your meds are adequate. I take Lexapro and Buspar plus Trazadone for sleep cycle. Hang in there. I’m proof that a bad round doesn’t mean the next one will be bad, too.

Thank you LisaB8, I appreciate your support. I didn't even realize they do a 30 day pump, you're right 48 hours is a heck of a lot better in comparison. I'm not on any meds for depression at the moment but am considering it (although am scared of more side effects!), and was also going to ask them if there is anything else I can maybe take for sleep. Thank you again for you encouragement.

Veggielvr, sorry to hear you are having a hard time. It's tough going but you can get through it. Just keep talking to your health professionals about how you are getting on. I found on Folfox that the I fusions days I couldn't sleep due to steroids they gave me and I ended up with a sleeping tablet to help get sleep on those days but in the days after my disconnect I crashed out on my own. Also worth noting that antidepressants have interactions with the anti-nausea drugs that you take so make sure you ask about this and talk through the risk v benefits. I ended up coming off medication based on the side effects and risks vs the benefits I was having from it. But everyone is different and the benefit far outweighs any risk.

On the neuropathy - once again tell your doctors what you are feeling. I spend a lot of my time standing at work and sometimes without shoes on, so I told them exactly what I was feeling (tingling etc) and they adjusted the oxi accordingly. Eventually I after an extra week break at 75% they pulled the pin on it as I still had tingling on infusion day. 5 months later with the exception of a case of butter fingers (which I suspect is here for good) my fingers and toes are fairly close to where they started.

VeggieLvr wrote:

Swirdfish wrote:I had x8 folfox treatments, then neuropathy in the hands and feet where starting to get severe and was annoying, however I pushed through. Im abit more then a year out now, and my hands are all but normal again, and my feet are about 80% better, but still lingering numbness especially on cold morning, however ive learnt to live with the feeling, and is quite normal. I threw everything at this, I didn't want any regrets.

Swirdfish I'm so glad your neuropathy has subsided, hopefully it goes away fully in time. I hear you about not wanting any regrets, I was all set to go all out until treatment started and hit me like a ton of bricks. But I will keep on fighting and just make sure to tell my doctors everything that's happening and how it's affecting me.

The chemo days or even upcoming chemo treatments just the though of it made me want to throw up. I didn’t use any of the medication they gave me I believe the made me feel worse. I just slept and slept some more when I needed it. It isn’t easy but was over quite quickly now thinking about it. During the chemo 8 weeks neuropathy wasn’t that bad. I’d say it hits you worse 2 to 3 months after you finish. But that’s me and not everyone is the same.

Some days I didn’t even know if my foot was on the brake or throttle in the car.

Swirdfish wrote:

VeggieLvr wrote:

Swirdfish wrote:I had x8 folfox treatments, then neuropathy in the hands and feet where starting to get severe and was annoying, however I pushed through. Im abit more then a year out now, and my hands are all but normal again, and my feet are about 80% better, but still lingering numbness especially on cold morning, however ive learnt to live with the feeling, and is quite normal. I threw everything at this, I didn't want any regrets.

Swirdfish I'm so glad your neuropathy has subsided, hopefully it goes away fully in time. I hear you about not wanting any regrets, I was all set to go all out until treatment started and hit me like a ton of bricks. But I will keep on fighting and just make sure to tell my doctors everything that's happening and how it's affecting me.

The chemo days or even upcoming chemo treatments just the though of it made me want to throw up. I didn’t use any of the medication they gave me I believe the made me feel worse. I just slept and slept some more when I needed it. It isn’t easy but was over quite quickly now thinking about it. During the chemo 8 weeks neuropathy wasn’t that bad. I’d say it hits you worse 2 to 3 months after you finish. But that’s me and not everyone is the same.

Some days I didn’t even know if my foot was on the brake or throttle in the car.

The mental aspect is tough. There are times when it felt like dread the day before an infusion.

LittleG wrote:Veggielvr, sorry to hear you are having a hard time. It's tough going but you can get through it. Just keep talking to your health professionals about how you are getting on. I found on Folfox that the I fusions days I couldn't sleep due to steroids they gave me and I ended up with a sleeping tablet to help get sleep on those days but in the days after my disconnect I crashed out on my own. Also worth noting that antidepressants have interactions with the anti-nausea drugs that you take so make sure you ask about this and talk through the risk v benefits. I ended up coming off medication based on the side effects and risks vs the benefits I was having from it. But everyone is different and the benefit far outweighs any risk.

On the neuropathy - once again tell your doctors what you are feeling. I spend a lot of my time standing at work and sometimes without shoes on, so I told them exactly what I was feeling (tingling etc) and they adjusted the oxi accordingly. Eventually I after an extra week break at 75% they pulled the pin on it as I still had tingling on infusion day. 5 months later with the exception of a case of butter fingers (which I suspect is here for good) my fingers and toes are fairly close to where they started.

Thank you LittleG, I am the same way with sleeping the first night due to the steroids. They had my try Ativan to help me sleep and also to alleviate the nausea - it seemed to help, although I don't know that it helped me sleep any more than when I take Xanax (I've been taking the generic Xanax (Alprazolam) .25 mg occasionally for anxiety even before I was diagnosed with cancer). I am nervous about side effects of any more medication so that is a good point to be aware of (I once took one dose of Effexor, also before I was diagnosed, for anxiety and depression and the side effects from that were so bad I never took it again!).

I'm glad your neuropathy has basically gone away, that's good to hear. I admire you and anyone else who goes to work through this - I'm out on disability right now till August and I can't imagine working, although I know I will need to go back!

Swirdfish wrote:The chemo days or even upcoming chemo treatments just the though of it made me want to throw up. I didn’t use any of the medication they gave me I believe the made me feel worse. I just slept and slept some more when I needed it. It isn’t easy but was over quite quickly now thinking about it. During the chemo 8 weeks neuropathy wasn’t that bad. I’d say it hits you worse 2 to 3 months after you finish. But that’s me and not everyone is the same.

Some days I didn’t even know if my foot was on the brake or throttle in the car.

I'm with you on just the thought of treatments making me want to throw up - I have to actively avoid thinking about it on my good days or I will start to feel anxious and sick. In the two days before my treatments where I start my restricted-calorie fasting I also get cranky, knowing that he treatment is coming up and that I have to fast for it specifically.

Good to know about neuropathy potentially coming on worse in the months after treatment, that's good information to have, thank you.

Swirdfish wrote:Some days I didn’t even know if my foot was on the brake or throttle in the car.

I'm lucky in that my husband has been doing most of my driving for me, on the days I drive on my own it feels weird now!

NHMike wrote:The mental aspect is tough. There are times when it felt like dread the day before an infusion.

NHMike I completely agree! I try my best to enjoy the days I'm feeling well, but two days before my next treatment I start to get cranky and sad.

One thing that really helped get me through chemo was one fun day every week. I would not see Dr.(s) on this day, I would do something fun like getting together with a girl friend. It was one day I would not think about my cancer. Kind of a vacation from cancer.

Good luck,

Lee

Lee wrote:One thing that really helped get me through chemo was one fun day every week. I would not see Dr.(s) on this day, I would do something fun like getting together with a girl friend. It was one day I would not think about my cancer. Kind of a vacation from cancer.

Good luck,

Lee

Thank you Lee, that's great advice. I have a couple of outings this weekend I'm really looking forward to, which will be a nice break from all this for sure!

VeggieLvr wrote:

Swirdfish wrote:The chemo days or even upcoming chemo treatments just the though of it made me want to throw up. I didn’t use any of the medication they gave me I believe the made me feel worse. I just slept and slept some more when I needed it. It isn’t easy but was over quite quickly now thinking about it. During the chemo 8 weeks neuropathy wasn’t that bad. I’d say it hits you worse 2 to 3 months after you finish. But that’s me and not everyone is the same.

Some days I didn’t even know if my foot was on the brake or throttle in the car.

I'm with you on just the thought of treatments making me want to throw up - I have to actively avoid thinking about it on my good days or I will start to feel anxious and sick.

I'm lucky in that my husband has been doing most of my driving for me, on the days I drive on my own it feels weird now!

It yo that. I don't want to think, prefer my husband to friends but both don't want company nor to be alone.

NH Mike - I hear you about anticipating the treatment. I know that's a "thing" (they warned/told me about it). I'm almost more nervous about Round 2 because Round 1 went well and I don't want to assume it will be the same. Like someone here said, take it day by day and just get through it - whatever it is.

lakeswim wrote:NH Mike - I hear you about anticipating the treatment. I know that's a "thing" (they warned/told me about it). I'm almost more nervous about Round 2 because Round 1 went well and I don't want to assume it will be the same. Like someone here said, take it day by day and just get through it - whatever it is.

Round two was probably my toughest round because I didn't anticipate the cumulative effect and because it was so cold here. After that, we reduced the Oxaliplatin and that helped a lot. Still no fun but the infusions weren't as debilitating.