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Caat55
Posts: 526
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Mon Mar 19, 2018 5:04 pm

DITTO THAT
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Wed Mar 21, 2018 12:07 pm

What is the local wisdom on minimizing CAPEOX side effects? I remember seeing something on avoiding folic acid? Also, what are CAPEOX veterans' experiences with hair loss? Complete? ThInning?
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 526
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Wed Mar 21, 2018 2:42 pm

retiredteacher wrote:What is the local wisdom on minimizing CAPEOX side effects? I remember seeing something on avoiding folic acid? Also, what are CAPEOX veterans' experiences with hair loss? Complete? ThInning?

The nurse who did my chemo teaching gave me a pamphlet and Folic acid was contraindicated. I will check to see what else is mentioned. 1cup water, salt and baking soda gargle for mouth sores twice a day.
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

heiders33
Posts: 283
Joined: Sat Nov 04, 2017 11:08 am

Re: New Member here on the forum

Postby heiders33 » Wed Mar 21, 2018 3:07 pm

I didn't experience hair loss, just thinning. And that was really more toward the beginning. Once my body adjusted the thinning stopped.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: New Member here on the forum

Postby O Stoma Mia » Thu Mar 22, 2018 1:11 am

retiredteacher wrote:What is the local wisdom on minimizing CAPEOX side effects?

O Stoma Mia wrote:
  • Common side effects of XELOX (CAPEOX) are:
    ' Each of these effects happens in more than 1 in 10 people (10%). You might have one or more of them.
    * Numbness or tingling in fingers and toes
    * Increased risk of getting an infection
    * Breathlessness and looking pale
    * Bruising, bleeding gums or nosebleeds
    * Tiredness and weakness (fatigue) during and after treatment
    * Feeling or being sick
    * Diarrhoea
    * Mouth sores and ulcers
    * Loss of appetite
    * Soreness, redness and peeling on palms and soles of feet
    * Constipation. ' '
    .
  • Occasional side effects
    Each of these effects happens in more than 1 in 100 people (1%). You might have one or more of them.
    * Hair loss
    * Headaches and dizziness
    * Watery or sore eyes
    * Tummy (abdominal) pain
    * High levels of bilirubin in your blood
    * Kidney changes
    * Difficulty swallowing or breathing
    * Periods stopping
    .
  • Rare side effects
    Each of these effects happens in fewer than 1 in 100 people (1%). You might have one or more of them.
    * Ringing in your ears (tinnitus)
    * Heart problems
    * An allergic reaction to oxaliplatin


Caat55
Posts: 526
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Thu Mar 22, 2018 11:54 am

Hope it's going well for you. I am doing premed so far, anti nausea and now steroid.
How's it for you?
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

heiders33
Posts: 283
Joined: Sat Nov 04, 2017 11:08 am

Re: New Member here on the forum

Postby heiders33 » Thu Mar 22, 2018 12:30 pm

Good luck to you both! Watch out for any signs of allergic reaction. Also, when you are done, watch out for any reactions in your eyes and face and mouth to cooler air. This caught me by surprise the first time - my eyes twitched and I had trouble talking. Even if it's not that cold where you are, it could still happen. Or it might not - everyone reacts differently!
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

Caat55
Posts: 526
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Thu Mar 22, 2018 3:18 pm

heiders33 wrote:Good luck to you both! Watch out for any signs of allergic reaction. Also, when you are done, watch out for any reactions in your eyes and face and mouth to cooler air. This caught me by surprise the first time - my eyes twitched and I had trouble talking. Even if it's not that cold where you are, it could still happen. Or it might not - everyone reacts differently!

Thanks, just hand cramping and peeing a lot. Hope you are well too? Last bag, calcium and magnesium then home.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Thu Mar 22, 2018 7:08 pm

Thanks! Went very well - until the end! Twitchy eyelids check. Went to the ladies room and started having breathing problems - they think allergic reaction, but it was at the very end of infusion! Unable to breathe by the time I got back to my chair. That's some scary stuff! Holy crap! Drunk and goofy from all the Benadryl they shot into me. Vein hurts like hell from IV; nurse says that vein will actually spasm from the chemo and suggests heat next time. If it's only once every three weeks I can handle it. Also just knowing what it is - I was loosening the tape thinking a had a skin pinch. Next time they are going to add Benadryl and Ativan and I'll sit close to the nurse's station. Other than that (Mrs. Lincoln) everything went smoothly!
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Thu Mar 22, 2018 7:09 pm

Susan, I did not receive calcium etc. Any idea what it is for - should I ask next time?
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 526
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Thu Mar 22, 2018 7:31 pm

That's sounds so scary. I hate benedryl. How long did it take?
It was easy with the port, They gown and mask up, I have to breathe away from the site to prevent contamination. I had some thick feeling in my throat at the very end but was able to breathe, it kind of feels like the beginning of a cold but it came on so quickly, so they were okay with it,The minerals are possibly going to help with neuropathy, science is out but the Dr. feels like there is no harm and only potential benefit.
tying is very difficult right now, can only use index finger of right hand, fingers are cramping, so typos are to be expected. I just had the jaw thing to I have read where my jaw feels locked up initially then it relaxed.
One down, four to go.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds

heiders33
Posts: 283
Joined: Sat Nov 04, 2017 11:08 am

Re: New Member here on the forum

Postby heiders33 » Thu Mar 22, 2018 8:16 pm

retired teacher, I had to get the port after my first infusion because my arm hurt for a good week afterward. If your arm continues to hurt I would recommend looking into the port. It’s really not bad to get put in, and it makes everything easy and painless.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, KRAS
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR with loop ileostomy
October 2017 - February 2018: XELOX six rounds
March 2018: reversal
April 2018: CEA 2.1, all blood counts normal
May 2018: CT scan showed liver spot
August 2018: Abnormal PET, CEA 2.4
September 2018: liver resection with HAI pump

retiredteacher
Posts: 95
Joined: Sat Oct 21, 2017 1:34 pm

Postby retiredteacher » Fri Mar 23, 2018 12:27 am

Do not have this site set up on my phone yet, only desktop; will have it by next time. Noticed a very weird "stupid feeling" in my hands/fingers at the end. They felt very disconnected - like numb and asleep without
the pain. Also got a coughing fit after the Benadryl and shooting pains in my jaws, right and left, seem connected to salivary glands - repeats when eating. The cold sensitivity on the hands is REAL - I was moving cooler room temperature water bottles to the bedroom from the kitchen pantry and had to drop them. Seems weird that something that warm would cause discomfort. (Not a fan of water bottles, but we are on untreated well water. Good quality, but too many unknowns in the piping system etc. Once the cancer treatment is over, the plastic bottles will be gone.) Set up some of the water bottles in sous vide pot in the kitchen - set to 98.6 F. Heiders, thanks for the info - will see how the next one goes - at least the port will be an option. (Good luck on your reversal recovery - hope it is going smoothly for you!) Susan, hope it is smooth sailing for you this week! Mia thanks for the info - great website ---
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

User avatar
O Stoma Mia
Posts: 1450
Joined: Sat Jun 22, 2013 6:29 am

Re: New Member here on the forum

Postby O Stoma Mia » Fri Mar 23, 2018 1:37 am

retiredteacher wrote: ... I was loosening the tape thinking a had a skin pinch...

Be very, very careful with the IV cannula site. Make sure that you don't do anything that will cause the IV needle to become dislodged or jerked around.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44791&p=322567#p322567

Caat55
Posts: 526
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Fri Mar 23, 2018 9:46 am

My husband thought I was stoned last night, BF said I was manic....must have been the steroids. We have great water but as it is right off the mountain freezing cold from taps. I will put a jug on pellet stove to keep it warm, don't have a sous vite pot.

How is your arm today? Do be very careful with I Vsite during chemo, I have had several patients over the years with big hand issues come to me for therap due to chemo infiltration.

My friend got a small filter under kitchen sink to treat water from well, have you looked into that? Where do you go for Chemo?

Pins and needles feelings are real, almost constant once I got out of bed, don't know the trigger.

S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds


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