Start tomorrow. So scared.

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lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

Start tomorrow. So scared.

Postby lakeswim » Sun May 20, 2018 10:31 am

Hi, all.
So, I've decided on treatment and I start tomorrow morning - with chemo - and I'm terrified.

After a 2nd opinion and lots of hand-wringing and sleepless nights, I decided on a treatment - total neoadjuvant therapy (TNT) - or chemo, then chemo/radiation, then surgery (if a good response, perhaps no surgery, but I'm assuming surgery). This has taken forever (diagnosis, staging, appts, decisions) and now it's REAL. The depression has hit hard.

Anyway, so, tomorrow, I start chemo. FOLFOX - every other week - 8 rounds. With take home pump for 2 days. (I hope I'm getting the details right but I've had to take a break from researching and reading and looking at my notes as it gives me so much anxiety and I can't sleep if I think too much.)

I have read and heard so many different things about this chemo. The ONC nurse told me "her patients do well" on it - as if they just feel a bit under the weather. Others say they have debilitating side effects. I've read about fasting and how it can help and I've then read how it is unproven and can hurt your liver. I've read how painful exposure to cold is with the neuropathy - yet have been told (by a functional MD) that I should hold ice bottles during infusion (and suck on frozen grapes to avoid mouth sores). My PCP told me I "must be positive" or I won't get through this (?!). Lots of information and much of it is in contrast to the other. I'm terrified of LT neuropathy (my greatest joy in life - besides my children - is swimming .... in a cold Adirondack lake - will I ever do that again?!). I read how exercise is so important yet I hear how exhausted people are - fighting nausea and diarrhea, etc.

I feel like I'm walking into a WAR, completely naive, ignorant, and unprepared in every way. I don't want to debate my treatment choice here (because I am already second guessing constantly) but I would love some feedback on what your chemo was like and what to expect. Any tips? Suggestions?

Thanks for any moral support....I sure could use some support from those who know and have been through it. (I'd like to find a local support group. I didn't find one in the support group post.)

Thanks so much.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

User avatar
O Stoma Mia
Posts: 1600
Joined: Sat Jun 22, 2013 6:29 am

Re: Start FOLFOX tomorrow. So scared.

Postby O Stoma Mia » Sun May 20, 2018 11:22 am

I think your best bet would be to look for feedback specifically from people who were on the FOLFOX regimen. Other regimens have a different profile of side-effect progression.

I have not had any first-hand experience with FOLFOX and have not had experience using a pump or a port. You would have to talk to someone else to get good, first-hand reports of FOLFOX experience.

Here is all I have:

Tips on minimizing FOLFOX side effects

  • Common side effects of FOLFOX
    Each of these effects happens in more than 1 in 10 people (10%). You might have one or more of them.

    - Increased risk of getting an infection
    - Breathlessness and looking pale
    - Bruising, bleeding gums or nosebleeds
    - Tiredness and weakness (fatigue) during and after treatment
    - Numbness or tingling in fingers and toes
    - Feeling or being sick
    - Pain in the vein
    - Diarrhoea
    - Mouth sores and ulcers
    - Periods stopping
    - Loss of fertility

  • Occasional side effects
    Each of these effects happens in more than 1 in 100 people (1%). You might have one or more of them.

    - Soreness, redness and peeling on palms and soles of feet
    - Runny nose
    - Skin sensitivity to sunlight
    - A brown marking on the skin following the vein
    - Hair thinning
    - Brittle, chipped and ridged nails
    - Watery or sore eyes

  • Rare side effects
    Each of these effects happens in fewer than 1 in 100 people (1%). You might have one or more of them.

    - Difficulty swallowing or breathing
    - Ringing in your ears (tinnitus)
    - A mild or severe allergic reaction to oxaliplatin
    .
  • ⫸⫸⫸⫸⫸Tips for dealing with these and other FOLFOX side effects are given in the reference below. Click on the plus sign (+) next to the side effect of interest on the web page.
    http://www.cancerresearchuk.org/about-cancer/cancer-in-general/treatment/cancer-drugs/drugs/folfox/side-effects


Weekly side effects log (Use this for monitoring changes in side effects from one week to the next

_MON____TUE_____WED____THU____FRI_____SAT____SUN__
.AM PM..AM PM..AM PM..AM PM..AM PM..AM PM..AM PM.
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| * 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
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| * 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
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| * Ringing in your ears (tinnitus)
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| * Heart problems
|...|...| |...|...| |...|...| |...|...| |...|...| |...|...| |...|...| * An allergic reaction to oxaliplatin
.
Medications for each side effect - For each of the major expected side effects, you should have a plan for treating the side effect at three possible levels of intensity, for example:

1. Mild level - Home remedies or over-the-counter preparations
2. Moderate level - Mild prescription medications or over-the-counter preparations
3. Severe level - Strong prescription medications

It would help to have the options identified in advance at these three levels for each major type of side effect (and approved by your doctor), although it may not be necessary to purchase everthing in advance. Some products may be hard to find, so it may be wise to do some research in advance to determine where you are going to obtain the products in case you ever need them.

It is important to be pro-active and start treating the problems early, as soon as they start to appear. There is a reason for this: Under chemo/radiation therapy the immune system becomes somewhat compromised and a bit dysfunctional. It takes a bit longer for medications and treatments to take effect, so you need to start the treatments early, at the first sign of a problem. If you decide to wait until the problem becomes almost unbearable, then this might be a bit too late for your immune system to step in, catch up, and quickly solve the problem. In a way, there is no point in taking a 'macho' approach by trying to be a hero by toughing it out. Now is the time when your body needs tender loving care by giving it some form of treatment whenever something starts going wrong.
.

VeggieLvr
Posts: 61
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Start tomorrow. So scared.

Postby VeggieLvr » Sun May 20, 2018 12:01 pm

I am having my fourth treatment of Folfox tomorrow. I also go home with the 5FU pump, which I hate - it's actually not that terrible but I am a very squeamish person and hate the idea of something being connected to me (I also have a severe needle phobia). Getting through the first treatment I actually felt a little better, since I then knew what I was in for going forward. I researched a lot but the anticipation of not knowing what to expect was scary, so I totally get where you're coming from.

Honestly, I hate treatment, it's the oxaliplatin that causes the worst side effects for me. But - you get through it, and you enjoy the good days in between. That's what has helped me the most - enjoying the days when I do feel well by spending time with my family, friends, and my beloved pets. On the bad days during and after treatment, all you can do is try to get through them the best you can.

You mention fasting - I tried that with my last treatment (round 3) and for me, it made a huge difference. My side effects were greatly lessened, and I started to feel better much sooner than I did after my 2nd treatment. After my second treatment, where I just ate normally (or as much as I could with the nausea), it took me 9 days to feel better and like I was "back to normal"; after my third treatment when I fasted, I was feeling much better on day 5.

Basically what I did with my round 3 (and am going to do for tomorrow's round 4) is a "fasting mimicking" diet, where for 48 hours prior to treatment and 24 hours after treatment, I eat less than 500 calories a day. So it's five days total, which is a long time - I break the fast 24 hours after the pump is disconnected. The hardest part for me is the 48 hours pre-fast - fasting during treatment is easy for me as I get very nauseous and don't want to eat anyway!

I was worried about affecting my liver also, but from what I understand, the potential for liver issues can occur if you break the fast during the time the pump is connected to you. I'm relatively new to the forum so am not sure if I can post links, but I learned a lot from here: https://adventuresinlivingterminallyopt ... fast-lane/
I also learned a lot about fasting from here: viewtopic.php?f=1&t=59328&hilit=fast+food

Basically I'm experimenting with each treatment to see what makes it easier. I had such amazing results with the fasting that I wanted to share in case it helps you too. Hang in there, this journey is tough, but what I try to do is just take one day at a time, enjoy the good days, and not think too far into the future.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)
12/5/18 - Erbitux added
5/28/19 - 2nd liver resection/ablation

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

Re: Start tomorrow. So scared.

Postby lakeswim » Sun May 20, 2018 12:23 pm

VeggieLvr wrote:I am having my fourth treatment of Folfox tomorrow. I also go home with the 5FU pump, which I hate - it's actually not that terrible but I am a very squeamish person and hate the idea of something being connected to me (I also have a severe needle phobia). Getting through the first treatment I actually felt a little better, since I then knew what I was in for going forward. I researched a lot but the anticipation of not knowing what to expect was scary, so I totally get where you're coming from.

Honestly, I hate treatment, it's the oxaliplatin that causes the worst side effects for me. But - you get through it, and you enjoy the good days in between. That's what has helped me the most - enjoying the days when I do feel well by spending time with my family, friends, and my beloved pets. On the bad days during and after treatment, all you can do is try to get through them the best you can.

You mention fasting - I tried that with my last treatment (round 3) and for me, it made a huge difference. My side effects were greatly lessened, and I started to feel better much sooner than I did after my 2nd treatment. After my second treatment, where I just ate normally (or as much as I could with the nausea), it took me 9 days to feel better and like I was "back to normal"; after my third treatment when I fasted, I was feeling much better on day 5.

Basically what I did with my round 3 (and am going to do for tomorrow's round 4) is a "fasting mimicking" diet, where for 48 hours prior to treatment and 24 hours after treatment, I eat less than 500 calories a day. So it's five days total, which is a long time - I break the fast 24 hours after the pump is disconnected. The hardest part for me is the 48 hours pre-fast - fasting during treatment is easy for me as I get very nauseous and don't want to eat anyway!

I was worried about affecting my liver also, but from what I understand, the potential for liver issues can occur if you break the fast during the time the is connected to you. I'm relatively new to the forum so am not sure if I can post links, but I learned a lot from here: https://adventuresinlivingterminallyopt ... fast-lane/
I also learned a lot about fasting from here: viewtopic.php?f=1&t=59328&hilit=fast+food

Basically I'm experimenting with each treatment to see what makes it easier. I had such amazing results with the fasting that I wanted to share in case it helps you too. Hang in there, this journey is tough, but what I try to do is just take one day at a time, enjoy the good days, and not think too far into the future.


Thank you, O Stoma Mia (as always) for the info. And VeggieLvr - thanks for your good feedback. I guess we have different cancers but same chemo treatment? Anyway, you hit the nail on the head about the anticipation being scary. I'm a young(ish) woman who has been healthy her entire life - I have no idea what this will be like and how I will tolerate it. Good luck on the rest of your treatment (how many more?) and I hope you don't mind if I check in from time to time for advice. Thanks again.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

Re: Start tomorrow. So scared.

Postby lakeswim » Sun May 20, 2018 12:29 pm

lakeswim wrote:
VeggieLvr wrote:
Basically what I did with my round 3 (and am going to do for tomorrow's round 4) is a "fasting mimicking" diet, where for 48 hours prior to treatment and 24 hours after treatment, I eat less than 500 calories a day. So it's five days total, which is a long time - I break the fast 24 hours after the pump is disconnected. The hardest part for me is the 48 hours pre-fast - fasting during treatment is easy for me as I get very nauseous and don't want to eat anyway!



One more question - VeggieLvr - so, you said 5 days of fasting. With my tentative chemo schedule, mine would be closer to 5 1/2 days? If I fast 48 hours prior to treatment, that is fasting all Sat, Sun. Monday - early am - is treatment and it will be removed sometime Wed afternoon. So, then I'd go back to eating "normally" on Thursday afternoon (you say 24 hours after being removed). That's 5 1/2 days. How did you do it for that long - what did you eat? Did you get headaches/feel weak/hangry? Also, I'm curious what you ate? Did you focus on anything? Fats? Proteins? Thanks!!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*

heiders33
Posts: 362
Joined: Sat Nov 04, 2017 11:08 am

Re: Start tomorrow. So scared.

Postby heiders33 » Sun May 20, 2018 1:35 pm

I didn’t do Folfox, but rather the Xelox regime, which is the pill rather than the pump. Being familiar with Xeloda, I dreaded the side effects of Oxaliplatin more. I remember crying the night before my first infusion because I was reading about side effects and got so scared. The first round was definitely the hardest because I didn’t know what to expect. I actually felt OK for a couple days, but that was because of the steroids. When I crashed off the steroids, I let the nausea catch up with me. So in the rounds afterward, I knew what to expect and was able to manage better. It’s true that it was difficult for me to exercise because of the tiredness, but after a few days I was able to do some yoga. Going outside to exercise was hard because it was in the dead of winter. But if it had been warmer out I would have been able to do it. All that to say, I don’t want to sugarcoat it because the side effects are not easy, but you will get through it. Be sure to watch for neuropathy and let your onc know in case the dosage needs to be changed.

I recommend drinking lots of water and sugar free Gatorade or Pedialyte the day before infusion to help with muscle cramping. Keep a pair of gloves around the house to help with touching cold things from the fridge, etc.
37 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT
9/19 - Clear colonoscopy/colonography
10/19 - Clear CT
11/19 - CEA 9.8, PET abnormal, confirmed local recurrence

heiders33
Posts: 362
Joined: Sat Nov 04, 2017 11:08 am

Re: Start tomorrow. So scared.

Postby heiders33 » Sun May 20, 2018 1:39 pm

Actually, here is a post I did when I was in the middle of treatment with some tips: viewtopic.php?f=1&t=59205&p=468403#p468403

Again, it’s Xelox not Folfox, but most of my side effects were from the Ox.
37 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy
10/17 - 2/18: XELOX six rounds
3/18: reversal
5/18: CT liver spot, blood counts normal
8/18: Abnormal PET, CEA 2.4
9/18: liver resection/HAI pump
10/18: Clear CT/sigmoidoscopy
10/18 - 4/19: 6MO FUDR/5FU
7/19 - Clear CT
9/19 - Clear colonoscopy/colonography
10/19 - Clear CT
11/19 - CEA 9.8, PET abnormal, confirmed local recurrence

User avatar
susie0915
Posts: 945
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Start tomorrow. So scared.

Postby susie0915 » Sun May 20, 2018 1:51 pm

I also did the Xelox. I did xeloda alone before surgery with radiation and really did okay. The side effects I had from oxi was first bite syndrome, which no one told me about. Even when I told my oncologist she looked at me like she never heard of it. For 2-3 days after an infusion anytime I would take the first bite of food I would get severe pain down my jawline. After that I could chew with no problem, it's the weirdest thing. I did have diarrhea and I didn't have a ileostomy as I got a bowel blockage 4 weeks after my resection and had to have surgery for scar tissue and the surgeon decided to reverse my ileo then. But since you still have your rectum this may not be much of a problem, most of my rectum was removed during my resection. I really didn't have nausea, but could get tired. I would walk most days so long as I wasn't having digestive issues. Good luck tomorrow, I'm sure you will do fine. As others have said make sure you make your oncologist aware of side effects as they can reduce dosage levels. I had mine reduced a couple times because of the diarrhea. My neuropathy really didn't kick in until a month after finishing chemo. It's been 2 years and I still have tingling in my feet. It doesn't stop me from doing anything. I find if I keep moving it helps. Can be uncomfortable without shoes on hard surfaces.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 PET scan NED
9/15 LAR
0/24 nodes
10/15 blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 C 4mm lung nod
10/17 pel/abd CT NED
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, CT pel/abd/lung NED
11/18 CEA .6
5/19 CT NED, CEA <.5
10/19 Clear colonscopy
11/19 CEA <.5

GilletteRazorMan
Posts: 10
Joined: Sun May 20, 2018 3:27 pm
Facebook Username: Marc Lowell

Re: Start tomorrow. So scared.

Postby GilletteRazorMan » Sun May 20, 2018 4:06 pm

Am two weeks in. Pain getting worse from Rad when I poo. Mouth sores and 1St week was Nausea from Chemo drip. 6 weeks of Treatment for moi. Maybe 3 Chemo in total not sure. Hate it!!

Mucous leakage stink frim Hell!!!!

SteveNZ
Posts: 147
Joined: Tue Apr 24, 2018 4:21 pm
Location: New Zealnd

Re: Start tomorrow. So scared.

Postby SteveNZ » Sun May 20, 2018 5:19 pm

lakeswim wrote:Hi, all.
So, I've decided on treatment and I start tomorrow morning - with chemo - and I'm terrified.

After a 2nd opinion and lots of hand-wringing and sleepless nights, I decided on a treatment - total neoadjuvant therapy (TNT) - or chemo, then chemo/radiation, then surgery (if a good response, perhaps no surgery, but I'm assuming surgery). This has taken forever (diagnosis, staging, appts, decisions) and now it's REAL. The depression has hit hard.

It is pretty awful....... We are here for you.......
My rectal cancer sounds similar although right against the anus...YOW. I was on Xelox plus radiation. For myself sadly the Xelox caused enough chest pain that they stopped it. For some folk it is just a bit too nasty on the cardiovascular system and the team didn't want to take that gamble. The good news is that they thoroughly checked out my heart and it is in great condition. So there are pretty good times as well....

Sorry I cannot be of any help with your initial chemo.
Do take one day at a time and box on. It is like a long drawn out battle but you will get there.
For myself I also have the '...perhaps no surgery...' but also accepted that 'no surgery' is pretty unlikely. BUT be confident I am not going through all of this without aiming for the best outcome.

You are in my prayers
Aged 56 - I feel really young...
Colo-Rectal Cancer T2 N1 M0
March 2018 - Diagnosis
April-May 2018 Radiation+Chemo then a TIA (Minor Stroke). - Stopped Chemo.
August 27th-November 2018 - Surgery and long, long recovery
*Decided to live to 100 as I will get a telegram from Her Majesty the Queen when 100yrs old. I so, so want one.
Am a Salvation Army chap so I complete 'knee drill' (prayer) to the Commander in Chief often. For myself personally this helps me through.

margiej
Posts: 99
Joined: Sat Apr 14, 2018 8:46 am

Re: Start tomorrow. So scared.

Postby margiej » Sun May 20, 2018 9:08 pm

Chemo is scary but once you have started you will know what to expect and get into the swing of it so to speak. You have done your research and are so much better prepared than I was, for sure. My doctor told me most people tolerated my chemo (Xelox) pretty well so I just assumed it wouldn't be that big of a deal. It was harder than I thought but I got through it and you will too. As far as suggestions, I hope you have someone to go with you. I was planning to just go by myself and my daughter-in-law insisted she go with me, and I was so grateful for the support and companionship. My clinic provided free meals for the patient and guest and coffee, tea, cookies, etc., The food was always good and it was kind of a social time. One tip.. The cold sensitivity kicks in quickly with the Oxaliplatin... My daughter-in-law gave me a cold bottle of water partway through the infusion and it was fairly distressing... like drinking shards of glass. I was crazy anxious too and my doctor always had me take Ativan before my chemo infusions which helped a lot. Sometimes I even napped a bit during the infusion. It can take several hours so take reading material, audio books, podcasts, crosswords, a journal, etc. There will probably be TV to watch if you want. Ativan is also a big help getting to sleep when you are anxious or not feeling well.
That's all I got! I will be thinking of you tomorrow, lakeswim!
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

User avatar
mobrouser
Posts: 156
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Start tomorrow. So scared.

Postby mobrouser » Sun May 20, 2018 10:25 pm

Lakeswim, I will start Folfox round 8 of 12 on Wednesday. The infusion nurses have all been outstanding and attempted to answer any questions I had. I'm not sure if you will read this before your first round, but I hope it will help.

I was prescribed 2 anti-nausea meds to be taken at least 1 hr prior to infusion: Ondansettron and Dexamethasone(corticosteroid). One of them, I think it is the steroid, acts like a diuretic almost immediately so I learned after the first infusion best to wear elastic waist-band pants rather than button and zipper.

My Oxaliplatin and Leucovorin is infused at the cancer centre first and takes about 2 hours to empty the bags. Then I bring the portable Flourouracil bottle home for another 48 hours. I had read about the cold sensitivity side effects but had no idea how quickly they set in. I brought my usual bottle of water with ice cubes in it with me to my first infusion. Within half an hour of starting the oxi I took a drink and immediately understood what had been described. My lips went numb and it felt like I was swallowing glass. Other than that I had no other side effects at the clinic. The tingling also starts very quickly so it is best to wear gloves if you know you will be touching cold items. In the grocery store yesterday I had gloves on, while others were in t-shirts and shorts. I don't know how cold water feels against teh skin other than on my hands and feet as I'm careful to make sure the shower is hot before I step under it. My hope is that the tingling will disappear permanently after I'm done chemo, but I have heard that it can be long-lasting.

When I got home I was hungry, which is when I experienced "first bite syndrome" which I had not read about. It is painful but only lasts for a few seconds. By dinner time I was no longer hungry so just had a bowl of chicken noodle soup. This carried on while I was hooked up to the bottle, I would jus have bread with butter, soup, yogurt and water each day. During recovery I eat more but not nearly as much as I did prior. I was warming water in the microwave to drink but found if it sat around for a few hours it tasted horrible. Now I just pour a glass and let it sit 30 min to warm up and it tastes much better. You will likely find that some foods taste different now and may not be appealing anymore. I have experienced both diarrhea and constipation in the same round, but never to any extent that I felt I needed to take anything to "fix" the problem. I would be very cautious about fasting until you discover what your reactions are to the chemo. You may find, as I did, that you will not be wanting to eat much anyway. I would wait at least 2 rounds before considering it.

As I said, infusion day for me is Wednesday. By end of day Wed. I will feel tired, but not too bad. Thursday I will be more tired, and Friday ( disconnect day) is always the worst. Tired, nauseous - but not to the point of vomiting- and achy in the joints. Then things start to pick up over the weekend and on Monday I'm back to work for the week.

Hope all goes well for you.
8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear
Colonoscopy Dec 7 2018 - Clear - Next in 3 years?

MKC70
Posts: 25
Joined: Sat May 20, 2017 8:39 pm

Re: Start tomorrow. So scared.

Postby MKC70 » Sun May 20, 2018 11:33 pm

Hi there! I am a 47yr. old female and just finished my journey with basically the same schedule as you are entering into. I know it is scary, I was nervous as well. I think it is important to stay as positive as you can. I truly believe that will get you through. I had 5 rounds of Folfox every other week, then 5 weeks daily radiation (M-F), then back to 5 more weeks of the folfox, then surgery. (Note: I had and ileostomy surgery in Aug. and it was just reversed last Thursday). Please know that everyone's body is different, therefore everyone handles things differently. I was told this by my friend who is the same age and went through the EXACT same thing almost two years ago.

After my first chemo treatment, I did notice sensitivity to cold. I remember leaving my first chemo and sipping something cold on the way home. It didnt hurt, but felt "funny" in my throat. Just have lukewarm or room temp drinks for you during this time. The one side effect I had from the very beginning was heartburn/acid reflux. I never knew about this, so once I talked to my oncologist, he told me to take prilosec. It helped a lot. Stay away from foods that can give you heartburn as well. I would also prop myself up to sleep as that helped a lot. The way it worked for me was: I would have chemo infusions on Monday AM. I would leave and have the pump until Wednesday. Once disconnected, I would be "free" until the next round. For me personally I felt fine on infusion day, as well as the next day. By Wednesday, I felt OK, but some fatique and limited appetite. STAY HYDRATED!!! My situation on Wednesdays was a little different than what you might do. I had to have a shot on Wednesdays of infusion week, called Neluasta. My white blood cell count was low, so to boost the WBC count, I got the shot. No side effects for me, however they told me to take claritin in case of any bone pain. Took Claritin, but no pain at all. I really laid low Wednesdays and Thursdays, then bounced right back by Friday etc. Honestly near the end of the second set of 5 chemos, I do have to say it took me a little longer to bounce back. I still tried to go for short walks even if it is was up the road and back. That helped me a lot rather than staying cooped up in the house. I think a lot of the fatigue at the end really had to do with the radiation. I will get to that next. As far as any other info re: chemo: If you have a port, when it is accessed, I always had something in my mouth as when they"flush" the port ea. time, it gives you a split second of a weird taste in your mouth. What to bring with you: comfy socks/slippers, something to read. I loved my laptop for internet. Makes the time go by quicker. Just know the oncology nurses are awesome. They will keep a close eye on you and are simply enjoyable to have around as you sit in the infusion room.

Radiation: I was nervous about this because they tell you all the things that can happen (side effects). In retrospect I am glad I did the radiation. It is quick and you are usually in/out in 30 minutes or less. I will be honest and say that as you do your radiation, it does really weigh you down at the end. If I learned anything..... DRINK A LOT OF FLUIDS CONSTANTLY. I got dehydrated and had to go get infusions of saline. I felt loads better, but I didnt really focus on what the radiation was doing to me. I felt I was drinking enough, but that wasnt the case. I think dehydration was the worst out of everything I had to endure. When I finished radiation and had my first checkup with the radiologist, I was given a vaginal dilator. Due to the area getting radiated, she wanted to make sure that area stayed open. So a certain number of weeks after the radiation was over I started using that. I dont know if you will need to do this, but it is not a big deal and I will give you info if you need it.

I know I am forgetting something, but just know this..... the way you mentally handle this experience is important. I had a great support team of friends and family and I hope you do too. Just consider this a road block. It is only temporary, and you have to check things off as you go so you can see the light at the end of the tunnel. I am a very active person and it was pretty tough not having the energy I was used to. You can do this though. I will be here to answer any questions for you the best I can. No question is a silly question, and I would be glad to be here for ya.

VeggieLvr
Posts: 61
Joined: Fri Mar 09, 2018 3:02 pm
Location: NY

Re: Start tomorrow. So scared.

Postby VeggieLvr » Mon May 21, 2018 9:07 am

lakeswim wrote:
lakeswim wrote:
VeggieLvr wrote:
Basically what I did with my round 3 (and am going to do for tomorrow's round 4) is a "fasting mimicking" diet, where for 48 hours prior to treatment and 24 hours after treatment, I eat less than 500 calories a day. So it's five days total, which is a long time - I break the fast 24 hours after the pump is disconnected. The hardest part for me is the 48 hours pre-fast - fasting during treatment is easy for me as I get very nauseous and don't want to eat anyway!



One more question - VeggieLvr - so, you said 5 days of fasting. With my tentative chemo schedule, mine would be closer to 5 1/2 days? If I fast 48 hours prior to treatment, that is fasting all Sat, Sun. Monday - early am - is treatment and it will be removed sometime Wed afternoon. So, then I'd go back to eating "normally" on Thursday afternoon (you say 24 hours after being removed). That's 5 1/2 days. How did you do it for that long - what did you eat? Did you get headaches/feel weak/hangry? Also, I'm curious what you ate? Did you focus on anything? Fats? Proteins? Thanks!!


So the hardest part for me is definitely the 48 hour pre-fast - during treatment and for a day or two afterwards I don't get hungry at all because I get severe nausea (although fasting helped with the nausea a lot my last round, I still wasn't hungry at all). I guess it's a little bit closer to 5 1/2 days of fasting for me as well now that I think about it, since I end the fast 24 hours after the pump is disconnected, which is often later than when I began my fast. I have treatment today (Monday) at mid-day, so I started fasting at noon on Saturday, and will break the fast Thursday, probably around 3 or 4 pm (whichever is 24 hours after the pump is removed).

I don't get headaches, I don't get hungry due to the nausea (except during the 48 hour pre-fast, I am a bit hungry the first day). I do get a bit weak, but that's also a side effect of the chemo itself. From what I've read, during the fast you should avoid carbs and refined sugar. What I had last time was small fruit smoothies and small salads, maybe a few pieces of fruit here and there. It's important when breaking the fast to go slowly as well - small, light meals initially. It takes me a couple of days to get my appetite back also. Last time, I was back to eating normally by the third day after disconnect.

You can PM me if you want too - since I have treatment today I'll be off the computer all week but will respond when I am feeling better.

Edited to add one more thing: The most difficult thing about fasting for me is staying hydrated! Making sure you are hydrated makes a big difference. The oxi is very tough with the cold sensitivity, so you have to ensure to drink lukewarm water (which isn't very appealing to me personally!). But staying hydrated is important and helps a lot.
F, 42, Stage IV CC
2/23/18 - colonoscopy/virtual colonoscopy, diagnosed CC
3/6/18 - left hemicolectomy, 12" removed, clear margins. Multiple mets to lymph nodes (removed), omentum & liver, 1 possible lung met
4/6/18 - port install
4/9/18 - Folfox (Oxaliplatin/Leucovorin/5FU) 4 rounds
6/19/18 - liver resection, HAI pump install
8/30/18 - Folfiri (Irinotecan/Leucovorin/5FU)
12/5/18 - Erbitux added
5/28/19 - 2nd liver resection/ablation

lakeswim
Posts: 226
Joined: Sat Mar 31, 2018 9:37 am

Re: Start tomorrow. So scared.

Postby lakeswim » Mon May 21, 2018 2:09 pm

Thanks to all of the folks who have posted here! Such wonderful support - THANK YOU!!

I returned from the infusion center around mid-day and took a walk with a friend and I feel mostly okay so far. As far as what I've experienced so far.... it did hurt a little when they accessed my chest port for the first time (and I had had the ointment on for 45 minutes). But after the initial access and a little cold feeling with the first saline, I didn't feel much in terms of the port. The throat thing was the first thing I noticed - halfway into the Oxy infusion, drinking room temp water - my tongue felt odd and swallowing felt like I had a sharp object in my throat (I had my husband look in my throat!). I look forward (!!) to seeing how this throat thing will feel as it gets worse and I guess I'll need luke warm water (as some of you suggest). During infusion, I felt sudden fatigue every once in a while - and I assume that's the Benadryl battling it out with the steroid. I also experienced the first bite thing - which is equally bizarre - when I had a yogurt on the way home. It was slight pain radiating down my jaw line. I happened to combine the two things when I made a frozen smoothie for my daughter 1/2 hour ago and, without thinking, took a sip of the frozen liquid. Lesson learned! I have not yet felt much with my hands - and I even took a bag of frozen fruit out of the freezer without thinking - so I guess that's still in my future. I am feeling a bit of pins and needles right now in my hands/arms. I'm curious how many people on this forum have the neuropathy long term or lifelong? Well, hour 6 now and we will see how this goes into tomorrow (AND sleeping with the pump, which should be interesting). Thanks again for all your lovely support. Very grateful for you guys!
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
May 19 - flex Sig - looks good
Sept 19 - Chest/ab CT no change, MRI no change, flex Sig looks good
Jan 19 - flex sig - looks good
*grateful*


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