Pain Questions

150amanda

Hello All,

I am writing in concern for my sister. She started folfox and 5FU on 10/07/16, and she is still extremely fatigue. Her next treatment is this Friday, 10/21/16. She said she is so tired, she does not feel like getting out of bed. Granted, she is enduring a lot of pain from the obstruction and fistula and heavily medicated with pain pills. When will the pain get better? How fast does the chemo shrink the tumor? IS the fatigue normal with only one treatment? Your help is truly appreciated!

lizard44

Your sister has a lot going on

that could be contributing to the fatigue.  Chemo may be just one of the contributing factors,not the sole culprit, since  she is also in pain, heavily medicated with pain pills, and she may also be dealing with depression as a result of her diagnosis. I would  discuss the fatigue with her doctors, they may be able to change her pain meds or her dosage and adjust  her chemo. Does she get regular bloodwork before her  treatments? She could have low counts or be anemic.   Also, I know it sounds strange, but the more  she stays in bed the more fatigued she's likely to feel, so it's important that she get up  and move around  at least a little.  Everyone reacts differently, but  generally chemo will  knock you out for a day or two after treatment. To still be  severely fatigued almost two weeks later doesn't sound right.  As far as  chemo shrinking the tumor,   that probably varies greatly, mine shrank during chemo but it was the radiation afterwards that  really worked on reducing it.

I hope your sister   finds   some help for both the pain and the fatigue and that her future treatments are less stressful  for you both.

Grace/lizard44

Trubrit

Fatigue

I am so sorry to hear that your sister is suffering so. 

Normally the fatigue builds the longer you are in treatment, but as you say, she has allot of other things going on that could exacerbate the situation. 

I'm thinking age may factor in. If she is an exteme age (sorry Danker) she may get fatigued quicker than if she were 26.

I second everything Grace has said. It is true that the more you stay in bed or sit on the couch, the worse you feel; yet getting up can be such a struggle.  And definitley have her mention this extreme fatigue when she goes in for her next treatment. Make sure she sees her Oncologist. Sometimes they have a tendency to pop their heads around the door, so she needs to make it clear she needs to speak to him/her. 

As for your questions about shrinkage, it really all depends on the individual and the tumour. There is no set time. Same with the fatuigue. We are all so different that you just can't say one thing for all. 

SUE

NewHere

What Lizard And Tru Said

I was pretty lucky generally in how I tolerated chemo.  I had good bloodwork and so was able to do pretty much anything I wanted to. There were some days where it took a bit more effort to get past the intertia, but once I started moving I was fine.  I went to many baseball games.  I would often nap for an hour or two to make sure I could go and sometimes needed to kick myself in the rear a bit, but was fine once I got moving, other than a couple of times where I sat a bit more in my seat at the stadium as oppossed to walking around for exercise.

As Tru mentioned the tired aspect (for me) built up over time.  The day of the actual infusion I would sometimes rest when I got home, but more because of the day being a bit long and some stress of just driving in New York City  Then while on the pump, I was usually fine in terms of being tired while hooked up.  Usually the day after hook-up I would start feeling tired to the afternoon.  It was about 7 or 8 treatments in when I would get REALLY tired and basically would sleep for about 40 hours out of 48 starting about two days after disconnect.  

So once the other issues are settled, if you can get your sister up and going it probably will help.  Even if it is going to get a cup of coffee or some other thing for even a short period of time. It helps emotionally and physically, at least it did for me.  Getting in the car and driving 5 minutes to get a cup of coffee and something to eat at the local diner made me feel so much better....

 

150amanda

lizard44 said:

Your sister has a lot going on

that could be contributing to the fatigue.  Chemo may be just one of the contributing factors,not the sole culprit, since  she is also in pain, heavily medicated with pain pills, and she may also be dealing with depression as a result of her diagnosis. I would  discuss the fatigue with her doctors, they may be able to change her pain meds or her dosage and adjust  her chemo. Does she get regular bloodwork before her  treatments? She could have low counts or be anemic.   Also, I know it sounds strange, but the more  she stays in bed the more fatigued she's likely to feel, so it's important that she get up  and move around  at least a little.  Everyone reacts differently, but  generally chemo will  knock you out for a day or two after treatment. To still be  severely fatigued almost two weeks later doesn't sound right.  As far as  chemo shrinking the tumor,   that probably varies greatly, mine shrank during chemo but it was the radiation afterwards that  really worked on reducing it.

I hope your sister   finds   some help for both the pain and the fatigue and that her future treatments are less stressful  for you both.

Grace/lizard44

Thank you for your response

She does receive regular blood work. Her iron has been around 7-8 since diagnosed. I am assuming that does have something to do with it. What makes it worse is, she lost 20 lbs prior to diagnosis, and she was small to begin with. At this point, she is extremely skinny.

150amanda

Trubrit said:

Fatigue

I am so sorry to hear that your sister is suffering so. 

Normally the fatigue builds the longer you are in treatment, but as you say, she has allot of other things going on that could exacerbate the situation. 

I'm thinking age may factor in. If she is an exteme age (sorry Danker) she may get fatigued quicker than if she were 26.

I second everything Grace has said. It is true that the more you stay in bed or sit on the couch, the worse you feel; yet getting up can be such a struggle.  And definitley have her mention this extreme fatigue when she goes in for her next treatment. Make sure she sees her Oncologist. Sometimes they have a tendency to pop their heads around the door, so she needs to make it clear she needs to speak to him/her. 

As for your questions about shrinkage, it really all depends on the individual and the tumour. There is no set time. Same with the fatuigue. We are all so different that you just can't say one thing for all. 

SUE

Thank you for your response

She is 38 year old. However, she is extremely skinny from the cancer, and her iron has been low.

150amanda

NewHere said:

What Lizard And Tru Said

I was pretty lucky generally in how I tolerated chemo.  I had good bloodwork and so was able to do pretty much anything I wanted to. There were some days where it took a bit more effort to get past the intertia, but once I started moving I was fine.  I went to many baseball games.  I would often nap for an hour or two to make sure I could go and sometimes needed to kick myself in the rear a bit, but was fine once I got moving, other than a couple of times where I sat a bit more in my seat at the stadium as oppossed to walking around for exercise.

As Tru mentioned the tired aspect (for me) built up over time.  The day of the actual infusion I would sometimes rest when I got home, but more because of the day being a bit long and some stress of just driving in New York City  Then while on the pump, I was usually fine in terms of being tired while hooked up.  Usually the day after hook-up I would start feeling tired to the afternoon.  It was about 7 or 8 treatments in when I would get REALLY tired and basically would sleep for about 40 hours out of 48 starting about two days after disconnect.  

So once the other issues are settled, if you can get your sister up and going it probably will help.  Even if it is going to get a cup of coffee or some other thing for even a short period of time. It helps emotionally and physically, at least it did for me.  Getting in the car and driving 5 minutes to get a cup of coffee and something to eat at the local diner made me feel so much better....

 

Thank you!

I will continue to try to keep her moving. I appreciate your response!

lizard44

150amanda said:

Thank you for your response

She does receive regular blood work. Her iron has been around 7-8 since diagnosed. I am assuming that does have something to do with it. What makes it worse is, she lost 20 lbs prior to diagnosis, and she was small to begin with. At this point, she is extremely skinny.

If it's any consolation

I've always been  very small (skinny), and except for the times I was pregnant, when I ballooned up to a massive 107, usually weighed between 85 and 90  pounds. I had lost weight prior to diagnosis also.  I weighed 79 pounds, which had the doctors, especially my oncologist, quite concerned.  I have been lucky during the last 16 months of chemo and radiation in not having to deal with nausea, have actually gained weight during treatment and now weigh around 86 pounds. I hope  once she gets the causes of the fatigue sorted that your sister will be able to eat better and put on some weight. It might help, too if she kept a   food  diary, noting which foods  she can eat and  what foods cause problems. I've had to give up  fried food and iceberg lettuce completely, and have had to  limit some  foods, including  broccoli, cauliflower, most beans and other foods that cause gas, and  tomatoes because the acid seems to  upset my stomach. I can't eat  fresh/raw fruits with the exception of bananas, so I  use canned fruit canned in juice rather than   syrup. Whole milk causes  problems, so I  drink lactose free milk, but yogurt, sour cream  and  most cheeses don't cause problems. I also take a probiotic which seems to help and have cut way back on sugar, but haven't eliminated it.  It's a bit of work, but is worth the effort, I think, and even with those restrictions, it's possible  to be creative with your cooking and still  eat a nutritious  diet that works for  you.

Grace/lizard44

150amanda

lizard44 said:

If it's any consolation

I've always been  very small (skinny), and except for the times I was pregnant, when I ballooned up to a massive 107, usually weighed between 85 and 90  pounds. I had lost weight prior to diagnosis also.  I weighed 79 pounds, which had the doctors, especially my oncologist, quite concerned.  I have been lucky during the last 16 months of chemo and radiation in not having to deal with nausea, have actually gained weight during treatment and now weigh around 86 pounds. I hope  once she gets the causes of the fatigue sorted that your sister will be able to eat better and put on some weight. It might help, too if she kept a   food  diary, noting which foods  she can eat and  what foods cause problems. I've had to give up  fried food and iceberg lettuce completely, and have had to  limit some  foods, including  broccoli, cauliflower, most beans and other foods that cause gas, and  tomatoes because the acid seems to  upset my stomach. I can't eat  fresh/raw fruits with the exception of bananas, so I  use canned fruit canned in juice rather than   syrup. Whole milk causes  problems, so I  drink lactose free milk, but yogurt, sour cream  and  most cheeses don't cause problems. I also take a probiotic which seems to help and have cut way back on sugar, but haven't eliminated it.  It's a bit of work, but is worth the effort, I think, and even with those restrictions, it's possible  to be creative with your cooking and still  eat a nutritious  diet that works for  you.

Grace/lizard44

It relieves me to hear that

It relieves me to hear that you were skinny prior to starting chemo, and handled it well. I will definitely relay your information. Thank you!

nateswife

Hi, what your sister is going

Hi, what your sister is going through sounds a lot like my experience with the first two treatments of folfirinox. I was taking morphine for pain. That on top of chemotherapy knocked me out so bad. It was more than just not wanting to get out of bed- it was like the bed had a grip on me and wouldn't let go! People would try to talk to me and I couldn't keep my eyes open. I felt so bad. 

Fortunately, only the first two treatments did that to me. I also started weaning myself off of morphine which made a big difference. After four chemo treatments a lot of my tumors had shrunk by 50%. That relieved pain a lot. 

I truly hope that your sister gets relief quickly! Chemo can be a big help despite its bad effects. 

150amanda

nateswife said:

Hi, what your sister is going

Hi, what your sister is going through sounds a lot like my experience with the first two treatments of folfirinox. I was taking morphine for pain. That on top of chemotherapy knocked me out so bad. It was more than just not wanting to get out of bed- it was like the bed had a grip on me and wouldn't let go! People would try to talk to me and I couldn't keep my eyes open. I felt so bad. 

Fortunately, only the first two treatments did that to me. I also started weaning myself off of morphine which made a big difference. After four chemo treatments a lot of my tumors had shrunk by 50%. That relieved pain a lot. 

I truly hope that your sister gets relief quickly! Chemo can be a big help despite its bad effects. 

Thank you so much for your

Thank you so much for your response! Its amazing how much support and relief this board provides!

Bellen

Folfirinox

Hello nateswife - Was your chemo a combination of the two chemo cocktails?  Mine is just folfuri.

nateswife

Bellen said:

Folfirinox

Hello nateswife - Was your chemo a combination of the two chemo cocktails?  Mine is just folfuri.

Folfirinox

Hi Bellen,

i started out with folfirinox- 5FU, irinotecan, leucovorin and oxilaplatin. I think that the only difference between that and your treatment is the addition of oxilaplatin. i received it all as one chemo infusion.