Chemo starts on Monday

tina dasilva · July 2011

Jorge is starting chemo on Monday and he will be getting Folfox and oxy i was hoping if someone could tell me how to help Jorge with the side affects from the chemo . thanks all .P.S i hope everyone is doing well hugs to all.

Sundanceh · July 2011

J-n-T
Tina

Jorge is going to feel pretty bad. Whether this starts immediately or accumulates over time will be the question.

The fatigue and general bad feeling is alot of it. Best thing to do (I've said it before) is to just sleep it off on those days.

He's going to have all the cold sensation problems you've read about. Hard swallowing cold drinks, so he might need room temperature drinks only. When he eats, he will experience some sharp jaw pain for a few seconds. Running his hands under cool or cold water will feel like electric shock. His feet and hands will tingle from the neuropathy associated with this drug.

What might help Jorge and you can ask your onc about this is MAGNESIUM SULFATE. This is an infusion and if it were to work for Jorge it would allow him to be able to drink cold liquids right away after infusion (his quality of life would be better here) and it will help with his neuropathy.

It does not work for everybody, but it's worth looking into. If it does work, it just makes things a little more human for the patient. Being able to come hold and have a cold drink gives us "some sense of control" over this disease and is good for you mentally.

Watch and report all side effects. Most people get to about 8 sessions or more and then have to quit due to severe toxicity and neuropathy. The prescribed treatment is 12, but the more sessions you do, the effects could turn permanent.

So watch things closely. Doc can always adjust the doseage or lengthen the infusion time to help with things. Just keep talking to them.

Some neuropathy is going to happen - it's just a case of how bad and if it turns permananet or not.

I personally made 8 and it was over for me. Some people do the whole 12 (not many but a few) but they seem to suffer from permanent neuropathy.

This should give you some idea of what might happen. Best of luck to you both.

-Craig

relaxoutdoors08 · July 2011

First Few OK Then side effects get more intense
Tina,
He may feel just like he has "the flu" for the first few treatments. I kept track of my blood levels as I went through treatment. The blood levels determine if treatment continues: WBC, Hemoglobin, and Platelets. Later Liver Toxins Levels. Expect a drop in blood levels in the first three treatments but they come up again.

Important to drink so one does not get dehydrated. So Tea or decaf coffee always felt good. Room temperature drinks were fine as well. May only feel like sipping so one does not get nauseated.

Food, I ate small amounts of chicken, rice, soft vegetables, bananas during the 3 days of chemo and felt fatigue for a few days after each treatment. Then a good week between treatments. I ate well and gained back weight lost on chemo week. Protein important so if he likes coffee creamer use the protein powder from health stores.

Side effects: that oxi has side effects, sharp jaw pain take small bites and it goes away, eyes burning, numb mouth and tongue. Tingling and numbness in feet and hands. I wear wool socks and gloves.

Mouth sores and burning digestive system as time goes on. Miracle Mouthwash from the Mayo Pharmacy worked wonders.

With each treatment the effects get more pronounced. Also need to monitor the liver levels - my levels became toxic on the last 4 treatments and are now moving near normal 3 months post chemo but I have terrible nueropathy in my hands and feet. I completed 11 of 12 Treatments with the last two at 80% due to toxins in the liver.

Emotionally, best to take one treatment at a time and enjoy the week between. I thought they would never be over but here I am 3 months post chemo and had my scan, cancer free.

Hope and prayers for Jorge,
NB

abrub · July 2011

Plastic silverware helps
Metal feels cold, and is painful while on oxaliplatin. We got a stock of the heavy duty plastic ware, and it was very useful for me.

Ask his dr about B6 and Alpha Lipoic Acid to help with the neuropathies (different types of neuropathy from 5FU and Oxaliplatin.

It's a struggle, but then the day comes when he's done, and suddenly it doesn't seem as long. (I completed 7 out of 12. I believe that in England, they only recommend 8 cycles. In my case, with appendix cancer, they will never know if the Folfox was useful, so I quit when side effects got too bad.)

Buckwirth · July 2011

It is not always awful
I had cold sensitivity, but it was more of an annoyance, and only in the week I was in treatment. By week two I could drink milkshakes and eat ice cream. I may be wrong, but I think the effort I made to eat/drink cold foods in that second week helped.

I do have some continuing neuropathy in my feet, but again, nothing I can't live with.

I was also able to continue working throughout my treatments, including many out of state trips, and I made the full twelve weeks, something I am having difficulty with on my weekly Irinotecan treatments.

All of that said, I was offered the option of stopping the Oxy in week 9, and I wish I had taken it, only because the foot issues did not pop up until week 11, so I am left wondering if I had stopped a little early would my toes feel normal...

Not to say it was a walk in the park, I had some bad moments. Each time I worked with my medical team, adjusted doses, added things to curb side effects, and we got through it. The two worst things were nausea and stomach cramping, both of which were under control by round 4.

Good luck to Jorge, I hope his experience will be less like Craig's and more like mine.

Blake

tina dasilva · July 2011

Buckwirth said:
It is not always awful
I had cold sensitivity, but it was more of an annoyance, and only in the week I was in treatment. By week two I could drink milkshakes and eat ice cream. I may be wrong, but I think the effort I made to eat/drink cold foods in that second week helped.

I do have some continuing neuropathy in my feet, but again, nothing I can't live with.

I was also able to continue working throughout my treatments, including many out of state trips, and I made the full twelve weeks, something I am having difficulty with on my weekly Irinotecan treatments.

All of that said, I was offered the option of stopping the Oxy in week 9, and I wish I had taken it, only because the foot issues did not pop up until week 11, so I am left wondering if I had stopped a little early would my toes feel normal...

Not to say it was a walk in the park, I had some bad moments. Each time I worked with my medical team, adjusted doses, added things to curb side effects, and we got through it. The two worst things were nausea and stomach cramping, both of which were under control by round 4.

Good luck to Jorge, I hope his experience will be less like Craig's and more like mine.

Blake

Thanks guys
Thank you guys so much I'm going to try my best to do this round of chemo with him this man I love so much so I have my fighting face on . But for Jorge he's lucky I guess because he loves warm things to drink love you all .

Buckwirth · July 2011

tina dasilva said:
Thanks guys
Thank you guys so much I'm going to try my best to do this round of chemo with him this man I love so much so I have my fighting face on . But for Jorge he's lucky I guess because he loves warm things to drink love you all .

Tina
He will need to keep up his protein and iron. If he likes hot, I'm guessing he likes his morning coffee. What I do is put chocolate protein powder in the blender with a fresh cup of coffee, it makes a nice protein rich mocha (if you don't use the blender it can be kind of chunky). Add a bowl of Total in there for breakfast and he gets a big iron dose as well.

Love,

Blake

Chemo starts on Monday

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