Chemo advice

Steph19877

My mum is currently on Oxaliplation and Capecitabine chemo....she is having the worst side affects. She constantly feels sick and is gagging and wretching all the time...she cant get food down. She went to the hospital last week as she had lost 7lb in a week due to not being able to eat, they just told her to try and sent her home with more anti sick meds (shes tried about 7 different ones now) she weighed again this morning and shes lost a further 5lb since last week so shes going into hospital again today. i think they will put her on a feeding tube and maybe a drip.

Has anyone else experienced the side affects that bad where you phsyically cant eat? She weighs next to nothing now and is looking like skin and bone. We asked about reducing the dose and the doctor said last week we would have to speak to the consultant. Her consultant appointment isnt for another week so i feel that the dotors at the hospital today will just turn her away again. Something needs doing because if she looses any more weight she wouldnt survive.

Its becoming such a strain on our family at home as shes just moping around like a stroppy teenager and is refusing to eat saying "it wont go down" not sure what else we can do. Its hard work

Any advice would be greatly appreciated, thank you. Steph

Rose54

capecitabine side effects

Has your doctor prescribed anti-sickness drugs?  I took this drug and while taking anti sickness I was able to keep food down.

UncleBuddy

This disease is hard on the family, as well as the patient.

I'm not a doctor, but it doesn't sound like your mom is getting the proper care she needs from her doctors. If she is losing weight that quickly and feeling that sick, something needs to be done. My brother had complications and was on the verge of stopping chemo, but his doctor came up with a plan to lower the dose to make his quality of life acceptable to him. He feels well, we are going for his CT scan on Wednesday. He is stage 4 rectal cancer with mets to liver and lungs.

Maybe she needs new doctors? Never feel bad about getting a 2nd opinion. If you're not happy with how your mom is being treated, find a different team of doctors who are willing to listen to their patient. She shouldn't have to wait another week to get the help she needs!!!! Good luck.

Lin

Trubrit

Have her call the Oncologist

Her Oncologist is there for her every day and not just on appointment days. He/she should be just a phone call away. 

If he is worth his salt, then he will want to know how the chemo is effecting your mum (or is it affecting, sorry brian not working). He may be able to suggest an anti nausea med and prescribe it for her. 

Whenever something is going on with your mum, the Oncologist should be the first to know, as he is her primary provider for the cancer, it is no longer in the hands of her regular GP. Of course, you may already know this, and may have already called him.  Don't trust the hospitals to know, either. 

So, my friend, if you haven't already done it, give (or have your mum give) the Oncologist office a call. The nurses may be able to help too, but at least you will know that the Doctor will be aware of what is going on. 

I never did feel sick, thank goodness. Once, when I didn't take my anit nausea med in the morning, I got a little queasy, but never sick. I did lose a ton of weight from other side effects.

Make sure your mum drinks, as dehydration can play havoc with the body. 

Good luck, and keep us posted. 

SUE/TRU

Akroger

Nausea or throat difficulty?

Is your mom having trouble with actually swallowing (her throat feels swollen) or is her problem only nausea? My mother experienced severe nausea early on with 5-Fu and irinotecan, and her oncologist gave her a bevy of anti-nausea drugs, which are working, but now she has trouble swallowing because her throat is in pain and feels swollen in the days after chemo. She had chemo last Wedesday and hasn't eaten ANYTHING in the past three days, she can only drink water or Gatorade. It's pretty scary.

Steph19877

Akroger said:

Nausea or throat difficulty?

Is your mom having trouble with actually swallowing (her throat feels swollen) or is her problem only nausea? My mother experienced severe nausea early on with 5-Fu and irinotecan, and her oncologist gave her a bevy of anti-nausea drugs, which are working, but now she has trouble swallowing because her throat is in pain and feels swollen in the days after chemo. She had chemo last Wedesday and hasn't eaten ANYTHING in the past three days, she can only drink water or Gatorade. It's pretty scary.

3 days wow that is scary.

3 days wow that is scary. It's the nausea that's the problem for her. She did have the swollen throat for a few days after the chemo through the vein like your mum is experiencing but that soon passed. It's only once 3 times weekly. It's the tablets (capecitabine) that's making her feel like gagging and nausea all the time. She rang her onc today and they told her to come in... She's been on a drip all afternoon of fluid and glucose and has had an anti sickness injection as the tables have not been working for her. I will try blending fruit etc see if she can get thy down. The doctor has advised her today to stop taking the chemo tablets until she sees her consultant next Tuesday and they will hopefully lower the dose he said. so hopefully she is going to have a good week now and able to get things down. 

If your mum hasn't eaten for 3 days you should definitely get her in the hospital and on a drip. surely they can do something for the swollen throat?

my mum has also been sent home with steroids to boost her appetite so fingers crossed when they lower the dose next week... Her nausea will lessen and she'll be able to eat.

we live in the UK in Bristol

thanks for all your replies, so helpful. Always makea me feel better coming on here

Nana b

Trubrit said:

Have her call the Oncologist

Her Oncologist is there for her every day and not just on appointment days. He/she should be just a phone call away. 

If he is worth his salt, then he will want to know how the chemo is effecting your mum (or is it affecting, sorry brian not working). He may be able to suggest an anti nausea med and prescribe it for her. 

Whenever something is going on with your mum, the Oncologist should be the first to know, as he is her primary provider for the cancer, it is no longer in the hands of her regular GP. Of course, you may already know this, and may have already called him.  Don't trust the hospitals to know, either. 

So, my friend, if you haven't already done it, give (or have your mum give) the Oncologist office a call. The nurses may be able to help too, but at least you will know that the Doctor will be aware of what is going on. 

I never did feel sick, thank goodness. Once, when I didn't take my anit nausea med in the morning, I got a little queasy, but never sick. I did lose a ton of weight from other side effects.

Make sure your mum drinks, as dehydration can play havoc with the body. 

Good luck, and keep us posted. 

SUE/TRU

Where do you live, maybe one

Where do you live, maybe one of us can recommend another oncologist.   I also couldn't eat,  but I would take a small plate and put fruit such as berries on it and add some crackers. I would pick it at throughout the day.    I would  blend  a banana, blue berries, strawberries and a small comtainer of yogurt and sip that in the morning.   Bland food was what I could eat, even if it was Top Ramen with a bit of lemon, or Lipton soup.  

 

They can lower the dose, or even give her a break.  

Nana b

Steph19877 said:

3 days wow that is scary.

3 days wow that is scary. It's the nausea that's the problem for her. She did have the swollen throat for a few days after the chemo through the vein like your mum is experiencing but that soon passed. It's only once 3 times weekly. It's the tablets (capecitabine) that's making her feel like gagging and nausea all the time. She rang her onc today and they told her to come in... She's been on a drip all afternoon of fluid and glucose and has had an anti sickness injection as the tables have not been working for her. I will try blending fruit etc see if she can get thy down. The doctor has advised her today to stop taking the chemo tablets until she sees her consultant next Tuesday and they will hopefully lower the dose he said. so hopefully she is going to have a good week now and able to get things down. 

If your mum hasn't eaten for 3 days you should definitely get her in the hospital and on a drip. surely they can do something for the swollen throat?

my mum has also been sent home with steroids to boost her appetite so fingers crossed when they lower the dose next week... Her nausea will lessen and she'll be able to eat.

we live in the UK in Bristol

thanks for all your replies, so helpful. Always makea me feel better coming on here

Swollen throat

Throat swollen could be an allergic reaction. Hope the ONC knows about that.  Maybe try some Benadryl to see if that helps. 

Akroger

Steph19877 said:

3 days wow that is scary.

3 days wow that is scary. It's the nausea that's the problem for her. She did have the swollen throat for a few days after the chemo through the vein like your mum is experiencing but that soon passed. It's only once 3 times weekly. It's the tablets (capecitabine) that's making her feel like gagging and nausea all the time. She rang her onc today and they told her to come in... She's been on a drip all afternoon of fluid and glucose and has had an anti sickness injection as the tables have not been working for her. I will try blending fruit etc see if she can get thy down. The doctor has advised her today to stop taking the chemo tablets until she sees her consultant next Tuesday and they will hopefully lower the dose he said. so hopefully she is going to have a good week now and able to get things down. 

If your mum hasn't eaten for 3 days you should definitely get her in the hospital and on a drip. surely they can do something for the swollen throat?

my mum has also been sent home with steroids to boost her appetite so fingers crossed when they lower the dose next week... Her nausea will lessen and she'll be able to eat.

we live in the UK in Bristol

thanks for all your replies, so helpful. Always makea me feel better coming on here

My mom's anti-nausea remedies

For nausea, my mom takes prochlorperazine tablets (also known as compazine) and in each chemo infusion she also gets fosaprepitant (EMEND) and ALOXI (palonosetron). I think she may have previously gotten something else too but I can't remember what it was. Nausea isn't a problem for her anymore, it's just the swallowing. I tell my parents to alert her doctors about EVERYTHING, but sometimes they'll fail to either communicate the severity of the problem or they forget. 

My mom is at the hospital today getting MRIs because her doctor is concerned that the cancer may have moved into her bones, and I've told my dad to review the issues with the doctors again, so hopefully we'll be able to make some progress on this. Although if the cancer really is in her bones now too, I'm not sure what I'll do

Trubrit

Also

(sorry, I wasn't able to edit my post)

I had trouble swallowing food. It felt like there was a lump at the back of my throat and one down between the breast bone. There was no lump, just the senstion, so I had to make myself swallow.  I wonder if this is what she is experiencing? 

I don't know what you can do about her attitude, she is a grown woman, and badgering her will probably make her angry and resentful, even though you have nothing but the best intentions for her. 

You are both in my thoughts and prayers. Hope a resolution comes sooner than later, as damage can be done with lack of nutirition, which is so very important during treatment. 

SUE/TRU

Steph19877

Trubrit said:

Also

(sorry, I wasn't able to edit my post)

I had trouble swallowing food. It felt like there was a lump at the back of my throat and one down between the breast bone. There was no lump, just the senstion, so I had to make myself swallow.  I wonder if this is what she is experiencing? 

I don't know what you can do about her attitude, she is a grown woman, and badgering her will probably make her angry and resentful, even though you have nothing but the best intentions for her. 

You are both in my thoughts and prayers. Hope a resolution comes sooner than later, as damage can be done with lack of nutirition, which is so very important during treatment. 

SUE/TRU

My mum has now been admitted

My mum has now been admitted to hospital last night ... She has a stoma and has been having liquid stools in her bag for over 24hours, she's weak, can't eat and is on a drip. The doctors don't know what it is... They have taken a sample of the diarreah and will get the results tonight. I hope it's nothing serious. She has not taken any chemo for 5 days so they are not sure why she is so ill? She's nauseas and changing her bag every hour. Could this be an infection that can easily be treated with antibiotics or something more serious? The doctor said last night "we have to warn you it could be the cancer returning" which we don't believe as she only had the op to remove it 9 weeks ago. So scared 

Akroger

Steph19877 said:

My mum has now been admitted

My mum has now been admitted to hospital last night ... She has a stoma and has been having liquid stools in her bag for over 24hours, she's weak, can't eat and is on a drip. The doctors don't know what it is... They have taken a sample of the diarreah and will get the results tonight. I hope it's nothing serious. She has not taken any chemo for 5 days so they are not sure why she is so ill? She's nauseas and changing her bag every hour. Could this be an infection that can easily be treated with antibiotics or something more serious? The doctor said last night "we have to warn you it could be the cancer returning" which we don't believe as she only had the op to remove it 9 weeks ago. So scared 

That's really scary

My mom has a stoma also, and we;ve seen diarrhea problems for her too. Usually the cause has been something she's eaten though, I'm guessing you probably already considered that option. How much has she been eating/drinking since chemo? It usually takes my mother a full week before she starts to feel like herself again, sometimes even longer, so I wouldn't discount that possibility after 5 days. I'm not a doctor, but I really don't see how this could be related to a cancer recurrence this soon after her operation. Chemo itself can be a cause of diarrhea, and certainly a treatable infection could be a possibility because your mom's system is weakened so much by the chemo too. Even if this chemo hasn't caused diarrhea for your mom before, I can say that from my mom's experience, not all the side effects occur right from the beginning, or at the same time. My mom has been on her current type of chemo since April, but her difficult awallowing has only really manifested itself in the past month, and the painful sores in her mouth and throat were only after the most recent chemo, now 10 days ago. I really wish the best for your mom, that this latest development is something easily treatable and not so serious after all.

It's a terrible roller coaster we're constantly on. Just when things seem to start to calm down, something else terrifying happens, and we can never be sure whether it's just our moms' systems acting up at an acceptable level or if it's actually a real emergency.