FOLFOX Side Effects and Tips to Deal With Them
HTML-код
- Опубликовано: 9 июл 2024
- We all know chemotherapy sucks, but what can we actually expect to feel while we’re on it? In this video, I talk in-depth about the side effects I experienced while on the chemotherapy FOLFOX for Stage 3 Rectal Cancer and share with you tips and tricks that I learned to help cope with them.
⏱️TIMESTAMPS⏱️
0:00 Intro
0:49 First FOLFOX chemo side effect - cold sensitivity
2:45 Tips and tricks to manage the throat cold sensitivity
3:47 Other FOLFOX cold sensitivity side effects
4:39 Fatigue
6:42 Managing the fatigue
7:39 Nausea
9:10 Muscle cramps
9:58 Neuropathy
11:50 Weird smells while on chemotherapy
12:35 Side effects I'm still experiencing 3 years after chemo
✅Click on the link to subscribe so you can hear more about what to expect after a cancer diagnosis: / @survivorjelena
My most popular videos
=========================
💉My Cancer Diagnosis: • The Story of My Colore...
😷My Colorectal Cancer Symptoms: • My Colorectal Cancer S...
💊My Oral Chemo Experience: • My Story of Going Thro...
Follow me on
=============
Instagram - / colorado.jelena
Twitter - / survivor_jelena
Stock photo used:
Slow-Motion Footage Of Flames On Burning Wood - Video by Kelly Lacy from Pexels
Just starting my colon cancer and chemo journey. I'm on folfoxiri, your two plus ironotecan to combat my stage 4 multiple masses in my liver in hopes to reduce them for surgery. Just had my first treatment, not too bad. On zofran for nausea, ginger drops, and I hope to stay active. I used to be a goal of 10k but realistically I have reduced but I know exercise is so key for colon cancer. I'm a mom of 4 kids and so motivated to fight and beat this cancer.
The first couple of days after chemo are the hardest to keep moving, but having a goal could make it a little easier. Break up the exercise into smaller chunks throughout the day if you’re too tired to do it all at once. I hope it stays not too bad for you 🤞🏼💙
@@SurvivorJelena you're inspiring and even the image of you at the gym with the your chemo fanny pack. I will probably just do indoor walking videos when the weather becomes cold in California. Any advice on supplements, vitamins, foods that you consumed during chemo?
@@babygomes06 stage 3n1 did 5 weeks chemoradiothearpy capcitibine 3200 mg per day now doing folfirinox 6 cycles tnt and then lar in 8 weeks, plus another 6 cycles of folfox after that, this is in Australia prodige 23 trial protocol. Wishing you and your family the best. Vitamin D levels I take 4000 ui and vit d level 76, a lot of crc people have low vit d. ask for it in the blood work.
I realize now you maybe finished your cycles and leaving this to help others who may be following the prodige 23 trial. My potassium level at 3.5 after the infusion left me with not being able to do up the buttons on my shirt but recovered soon after.(1 hour) at 4.1 I was fine.
How's your life going?
Thank you. I had my cancer surgery June 4. Recovery is slow, but I’m no spring chick! 73. Learning to live with a colostomy is interesting. Thank you for your videos. You have totally helped me. 💙
Glad to hear you’re hanging in there! As long as you’re making a little progress each day, slow is perfectly fine. 😀 The first few weeks will be a lot of trial and error with the colostomy. So happy that my videos have helped you. That’s exactly why I wanted to make them...to help others going through a similar situation and make them feel like they aren’t alone in this.
How are you doing?
Going for my second treatment this afternoon. One of the side effects I had after the first round was first bite syndrome which is rarely mentioned anywhere but quite unpleasant. It went away after a week or so thankfully. Have had quite bad diarrhoea which can strike unexpectedly so have kept close to home mainly. The reaction to cold was difficult but I keep some padded gloves next to the fridge and ask for help going to the supermarket as I cannot put my hand in chiller cabinets or freezers. Fortunately I have only four rounds of treatment and it is summer which I am sure is a good thing. CT scan after all of this and hoping for good news!
I hope you get good news and your rid of this Nasty thing. Im sorry to bring this up but did the diarrhea happen just in the few days after .and is their any foods or vitimins that you shouldn't have
@mela Davies I got first bite sydrome as well. Feels weird, but does abate after a few dayss. Yes on the reaction to cold as well!
Thank u for makeing your videos helps us all God bless u
I get my port Friday im stage 4 pancreatic cancer unfortunately it has spred to my liver so this is my only chance to live a little longer you definitely eased my mind thank you
You’re welcome. I hope getting your port goes smoothly.
Heaven sent channel. Boosted me way up!
Awesome! Thank you!
I’m on folfox chemo right now and something that was killing me was the smell when they flush the Chest port with Xylene. One pf the nurse told me to eat mints while they flush the port . This helps a lot . I’m glad she told me that .
God bless all and stay strong 💪
That's a great tip from your nurse!
@SurvivorJelena what are your handles again on different platforms 😊
Thank you for your tips in this video. They really are helping me. I start chemo next week so thank you so much continue to post and anything you can think of helps us that are new to this. God bless you and keep you.
Best of luck to you as you get ready for chemo 💙
Just wanted to say thanks for sharing your story. I go in for chemotherapy this week. I feel better after watching your videos.
Thanks again
You’re welcome. I hope chemo goes ok for you 💙
Exactly! I had blocked the cold sensitivity side effect from my memory until you refreshed my memory!
Sorry about that 🤪!
Thank you for the channel. It has helped me through my treatment. I am getting my port next week. LAR surgery was last month.
This makes me so happy to hear that my videos have helped you throughout your treatment. This is EXACTLY why I wanted to start this channel. So people like yourself can get advice and not feel so nervous or alone during treatment. Wishing you the best as you get your port and start chemo 💙
Hi Jelena, first time looking at your videos. So sorry 😓😓😓😓😓😓😓😓to hear what you have been through. Thanks very much for sharing your journey. So so very happy 🤗🤗🤗🤗🤗🤗👍👍👍👍👍👍👍👍👍😍😍😍😍😍😍😍😍😍🙏🙏🙏🙏🙏🙏🙏 to hear that you are a survivor! Keep being healthy now.
Welcome to my channel. I’m trying my hardest to stay healthy & Cancer-free 😃
Thanks for the info. My mother will begin her treatments soon and now I know what to expect.
Happy to help. Wishing your mother the best 💙
I started my chemo treatment on last Monday. My experience with the cold drinks have been different. My tastebuds have definitely changed. Anything cold taste like extremely sour lemons and that killed my appetite. Yesterday was the first time that I really felt hungry and ate well. My fingers have a little tingle with touching something cold but it’s not extreme. Thick lotion and creams helps me. I’m talking to much, I thank you for your channel. Please share more.
I’ve never heard of the lemon taste before. It’s so weird how we all can react so differently to chemo. I’ll do my best to share as much as I can. Wishing you the best as you continue through chemo 💙
This is the type were the symptoms get delayed with mine i have to go home on a pump for 2 days ..ill tell you this helped me feel like i could try this ibe been so defeated im loosing hope im praying i will handle this ok and give it a chance im taking all your advice
It won’t be easy, but try to not get too much in your head before your chemo even begins. Just plan on not having a whole lot to do those first few days so if you need to lay around and rest a lot you won’t feel as bad.
I have suffered with rheumatoid arthritis for 30 odd years. Eight back/cervical neck surgeries both knees replaced both shoulders repaired and you mentioned one of the most important lessons I've learned. I wish people would speak more often about this. DON'T wait to take your meds!!! It is so much harder to get a symptom under control.
Gracias por tus consejos, estoy a semanas de empezar quimioterapias con folfox. Espero ser fuerte para recibirlas.
Thank you for sharing your experience. I will start chemo in two weeks and your videos are preparing me for the journey. I’m glad I ran into your videos.
Brother Dave you’re welcome. I’m so happy you found my videos. This is exactly why I started this channel...to help others through their cancer diagnosis! Wishing you the best as you prepare to start chemo 💙
Thank you so much.
You’re welcome!
Thanks for sharing your cancer treatment experiences. I was diagnosed with stage 3 rectal cancer, have completed 6 weeks of oral chemo and radiation therapy and am recuperating from my 4th Folfox chemo session with 4 more to go. Did your oncologist ever mention marijuana as a way to treat the nausea? When I asked my oncologist about this, he gave me a 3rd nausea reducing med that has done nothing to reduce the nausea. Medical marijuana is accessible in the state where I live and according to the nurses at my infusion center, several patients have received relief from marijuana therapy. Thanks again for your videos and thanks to all of the people who add their comments about their experiences to the forum!!!
I did ask about it and they said they would give me a red card if I needed it, which is what allows patients to buy marijuana for medical use. My nausea wasn’t horrible, and the basic meds they prescribed me were way cheaper than marijuana so I just stuck with them.
The one side effect that I have that you did not mention was my liver eznzymes started to rise after my 2nd round so he paused treatment for a week and then lowered my dose for the last 2 rounds
And my sence of smell is still good
I started neoadjuvant chemo in late September. My oncologist warned me about the increased cold sensitivity (along with other side effects... nausea, etc.).
He said "It is a bit of shame that your performance status wasn't high enough to start chemo earlier this year..."
(I came close to dying from sepsis because the tumor created a fistula between my colon and bladder when it grew, so, colon contents were leaking into my bladder. I was two months in the hospital)....
"... and we're at the time of year that we're at because, after all, we're heading into winter - and we are here in ALASKA!"
(Dr. Lawson is awesome. I love every interaction that I've had with him)
I’m glad you survived sepsis! But, oh brrrrrr, FOLFOX during an Alaskan winter! 🥶🥶🥶 I hope you were able to hunker down and hibernate under warm blankets.
@@SurvivorJelena Still had to go to work, but, fortunately my vehicle has a remote start and a great heater. At home, the air-heated mattress pad and the fireplace took on extra duty. 😁 Good sweaters, my hat, warm gloves, and knit scarves to cover the lower face took care of the rest.
Thank you for your videos
Glad you like them!
Chemotherapy does suck. Thank you for sharing your chemo experience with FOLFOX. My dad went through his first FOLFOX treatment and is now experiencing the side effects. I appreciate your tips, which will help me to better assist my dad.
Sending healing wishes to your dad 💙
Thank you on videos
You're welcome!
Hi, everyone .Just wanted to share my experience with side effects from chemo. I had my first infusion treatment last Thursday. In a few hours I developed cold sensitivity and first bite syndrome. I made sure to avoid cold drinks and was careful with taking food out from refrigerator.
The primary side effect for me that I haven’t seen mentioned by Jelena in this video is severe diarrhea accompanies by a loss of appetite. I’m also having stomach cramps, some abdominal pain, frequent gases and heartburn. The only way I was able to manage it is by snacking during the day with yogurt, power bars, fresh fruits. I also make sure to drink plenty of water to prevent dehydration.The Imodium doesn’t do the job any more. If anyone is experiencing similar side effects and has tips on how manage them, I’d appreciate your input.
Thank you for creating this channel, Jelena, I’m following it as I progress through the treatment, find it enormously helpful.
Thank you, Alex, for sharing your experience so far. I didn’t mention diarrhea because I had an ileostomy and it was difficult for me to tell the difference between “normal” output and diarrhea. Check with your oncologist at your next visit to see if they have something a little stronger than Imodium or additional suggestions.
@@SurvivorJelena I did discuss this issue with the doctor, so they have decided to reduce the dosage of 5-Fu by about 20%. That adjustment has worked , the diarrhea was eliminated during and for a few days after second infusion . The other major side effect - The neuropathy and cold sensitivity have lasted for almost a week. My doctor has recommended to take vitamin B supplement to help with repairing the nerve damage.
I’m glad you discussed this with your doctor and they came up with a good solution that has helped. You’ll have to keep me posted on if the vitamin B helps at all with the cold sensitivity.
@@SurvivorJelena I have some good news to report. Yesterday I had the rectal exam done before the start of the third infusion. The doctor seemed very surprised that he could no longer feel the mass inside. He said that treatment seemed to exceed his expectations and offered his congratulations. 😅🙏✌️.Another sign of cancer responding to the treatment is the CEA tumor marker blood test has decreased to the normal levels as compared to 3 1/2. months ago. However we are not out of the woods yet because the microscopic cancer cells could still be floating around in my body. They’ll proceed with the course until all 8 cycles are completed and imaging tests are done.
In terms of side effects of neuropathy in my fingers and toes,, the doctor has reduced the dose of oxaliplatin drug by 10%, it should still be enough to eradicate the cancer. I began to take vitamin B daily and will keep you posted if my neuropathy gets better. Today we are within first 24 hours into the Cycle Number 3, and it’s worse than during first 2 infusions, part of it I guess has to do with the windy and colder weather here in New York.. ☹️
I would like to offer a word of advice to all fellow patients reading Jelena’s vlog: If you are experiencing severe side effects from the treatment that affect your daily functioning to the point that it could no longer be tolerated. Please speak to your oncologist and ask them to reduce the dosage of the drug that causing it, If that doesn’t work, they can look into substituting it with alternative drug that might not have the same side effects. Please DO NOT quit the treatment in the middle! That applies especially to those undergoing neoadjuvant (before surgery) chemotherapy like myself. Completing entire 8-12 cycles ( this may vary depending on you treatment plan) will increase your chances of avoiding the surgery completely, or at least making the surgeon’s job easier in removing the tumor and surrounding lymph nodes. Also, completing the treatment is vital and crucial because it increases the chance to be cancer free for the rest of your life.
Great channel. I don't know why you don't have more subs!
Thank you so much!!! It’s started to grow a lot more in the past few weeks, so it’s getting there. 😃
Survivor Jelena subscribed!!!
@@SurvivorJelena subscribed. Pancreatic biliary
Thank you for your videos, please you always mention John your husband, could you do a video with him to learn how he coped through out your treatment, both emotionally and physically as I know for immediate family members it cannot be easy.
I’ve had it on my list as a potential topic for a while, but wasn’t sure how many people would be interested in it. I’ll bump it up a little higher now that I’ve got a request for it 😀
I needed to hear this. I will be taking FOLFOX soon. Thank you.
I just had my 7th round out of 12
Good luck
@@brandonshaw7619 I’m only on my second round and it is really kicking my butt. Considering I always felt strong and healthy before all of this, it’s a real shock to my system. Have your symptoms gotten much worse as you progressed with the treatment?
@@blueraven2345 I'm afraid so, I have only had two side effects that have been continuous. The cold sensitivity and first bite syndrome. I have had a few others that seem only to appear occasionally like the insomnia and no.appetite I have also noticed the cold sensitivity and first bite have gotten worse and lasted longer. I have had no nausea and have had a good appetite. THC helps I do believe.
💙💙💙Good luck
@@brandonshaw7619 thank you so much for your response as I didn’t know that the first bite syndrome was a thing. I experience that from the beginning and it is so bizarre. Also I’ve not been able to get to sleep till 330 or 4 o’clock in the morning which is a bit rough.
@@blueraven2345 yes first bite is by far my worst due to how bad it has gotten butit doesnt last it does subside but then i get chemo and it comes back in full force and i forget about it till that firstbite and don't be shy to ask your doctor drugs to help you sleep that's what they're there for. As my dr said " im poisoning you im obligated to make you comfortable".
I've been quite lucky. I was diagnosed with stage 3 in December 2021, and have just finished 6 cycles of FOLFOX. It's only been the last 2 cycles where any significant side effects have really raised themselves. I do smell cabbage, but that's most likely from my stoma bag, but I change that daily but it's still there. Funny that you mention it. Next up for me is more CT and MRI scans followed by radium treatment/and/or surgery.
That is quite lucky! I hope the rest of your treatment goes that smoothly.
Are you still on bag or you've got your reversal surgery done after chemo?
Ive had 5 treatments ( last dose last night( and now 6 days off- hooray) then bloods and assessment for surgery next week. 13:25
Muchas gracias por tus videos, empiezo mañana, me han dicho que ayuda llevar medias puestas de compresion durante las sesiones para mitigar los efectos en los pies, sabes algo de esto? Alguien lo ha probado por favor?
Hi Jelena, great to see you in good shape, a question though, How many days needed after the cycle for your symptoms to wear off and you go back to your usual state ?
It was about 3-4 days after the pump was disconnected that the worst of the side effects faded and my energy increased.
Muchas gracias
De nada 💙
Hi, thanks heaps for these vids. I am starting a regime of flofox soon. Can you drink green tea or normal tea at room temp. to combat the cold sensitivity.
Even room temp was too cold for me so I had to heat everything up that I drank for a few days. You can experiment and see if room temp is ok or not.
Thank you so much for all your helpful videos! my husband has stage 3 colon rectal cancer , He just finished up 5 days of radiation on sept 22 wich was his birthday! This Tuesday will be his first round of 8 rounds of the folfox chemo. Im very nurvous about the side affects as I hate to see him suffering any kind of didcomfort or pain. Hos long does the side affects last? he will be doing chemo every 15 days until January. Thank you for all your helpful videos ! Its good to know what he may be going through with the chemo treatments.
You’re welcome. The side effects are the worst the first few days, but the few days before he has his next cycle he may feel pretty normal. It is hard to watch a loved one suffer, but hopefully it will be a somewhat short term thing that will allow him more time here cancer-free.
When making food. Hard food is worst for bag and intestinal. Add alot of olive oil and grass feed butter and do not eat to much at one time.
The worst part about chemo (for me ) was not being able to drink regular cold water or eat ice cream. You learn to appreciate the small things! Like you mentioned: I also found that carbonated water was easier to drink than still water (evwn if it were coldish) And also didnt taste as bad.
You rare a warrior
Thank you!
It seems counter intuitive but I sucked on ice chips during my FOLFOX chemo sessions to reduce neuropathy in my throat and mouth. It seemed to work for me. I think the cold reduces blood flow to the neck and throat which reduces the amount of chemo that flows through that part of your body. Though I did develop an aversion to ice chips because think my mind now associates ice chips with chemo. I finished chemo about one year ago and still have significant numbness in my feet. I may have to give acupuncture a try. Also my typing and texting skills have been clobbered - I’m so slow now. And then there’s Chemo Brain. I’ve had some short term memory issues develop as well as some difficulty coming up with words when I speak. The weird thing is it didn’t really show up until months after chemo was finished.
I have heard about sucking on the ice chips during chemo to minimize the cold sensitivity, but I don’t think I had heard of it until after I was done so I never got to try it. The side effects can be pretty frustrating, so hang in there💙
Hello jelena, my mom is on folfox she has bad mouth sores which is inhabiting her to eat anything. Any tips to sooth that? Have you done oil pulling during chemo?
Has she tried mixing baking soda and salt with water to use as a rinse? I was instructed to rinse my mouth with that solution after every meal and that helped prevent mouth sores from happening in my mouth. Since she already has sores it should help soothe them a little. I never tried oil pulling during chemo, but I did try it some before my diagnosis. I don't see any reason why she couldn't try that to see if it helps...it seems like it should.
Thanks for the information. My mom is starting chemo next week for stage 3 colon cancer. My parents stay alone at home. Can my mom do daily routine like cooking, basic cleaning after taking chemo drug?
I was pretty tired for a few days, but could prepare meals and do cleaning ahead of time so I could rest on chemo day and the next few.
Thank you for sharing your experience. I am currently on Folfox and Oxiplatin (probably spelled wrong lol). Did you experience any hair thinning or loss with your treatment? And if you don’t mind me also asking, how many rounds of chemo did you take on? Thank you again for your videos.
My hair thinned, but I didn’t lose it all. I did 8 rounds of FOLFOX.
@@SurvivorJelena thank you so much Jelena :) Ive completed 2 rounds out of 12 of chemotherapy. I am on both Folfox and oxiplatin along with FU (don’t know how to spell but what my nurses and I refer to it as) which is what I take home with a pump for 46 hours. I also was diagnosed with stage 3 colon Cancer and your videos have helped so much with the anxiety that I’ve had around receiving treatment. Thank you 🙏😊
@@ashleyeneliko1824 hey how you doing now ?
@@ashleyeneliko1824 How are you doing now? My father has been diagnosed with the same thing. He has been asked to undergo 12 rounds of chemo too. Please share your experience. :)
I’m here too!
2. Evre rektum kanseri tedavisi görüyorum cerrahi ile Tümör alındı Hem koldan serum ile hemde hap olarak yazdı doktor 4 kür ün 3 bitti yalnız midemdeki sıkıntıdan dolayı hapları denilen miktarda kullanamıyorum
I start FOLFAX this coming Wednesday and I'm not looking forward to it. My colon cancer ended up in my lung. Now I have a port. My oncologist explained the side effects and scared the beejezus out of me. Now you explained yours clearly, Jelena, and I'm looking forward to a couple of months of misery followed by years of more misery. At least your suggestions on how to deal with them are good. One good thing: I live in Miami, Florida where a cold day is in the 60s. I don't mind tea, but I LOVE coffee. Any difference? I also love chocolate pudding--that's out for the time being. What about salads made with lettuce and other veggies out of the fridge? No go? I do have a recipe for warm German-style potato salad but I love my romaine. Maybe I would benefit from some kind of support group, or psychotherapy.
If you're used to coffee that's totally fine too. Coffee has a bit more caffeine and for some people it can make them 💩, but it's a great warm beverage option too. You can try salad to see how you handle it - maybe try leaving it out for a half hour to warm up a little if the cold is too much straight out of the fridge. Check to see if your cancer center offers any support groups...many do.
@@SurvivorJelena I completely forgot to ask this key question: How long does it take for the side effects to appear? Now it's been a full day after a four-hour FOLFAX infusion and a full day and night with the infusion pump. I'm feeling nothing. Not even "First Bite Syndrome." No temperature sensitivity at all.
I felt them while I was in the middle of my infusion at the cancer center. If you haven’t felt the cold sensitivity yet, you’re safe for this round.
My mother had same surgery last monday. Everthing went well and she is still in recovary in hospital. How long did you had Chemotherapie? It is next step and I am getting ready for it after my mother is ready to start with it... Thanx to talk about your personal experience so at least I can be a little bit prepared to unterstand what we'll have to manage... 🙏🏻
I’m glad your mom is doing well after her surgery. I did 8 rounds of chemotherapy which lasted for 4 months. Wishing her the best of luck 💙
@@SurvivorJelena she is strong, corona prevents me to visit her in hospital but thank God for skilled and responsible doctors and technology (facetime). So far so good, lets go forward with fight. Did it help cold hats for chemoterapy, did it help to save hair? My mom is not very happy by loosing hair. :(
Yes, thank goodness for technology and great medical teams. I didn’t try using a cold cap. If she’s going to be doing FOLFOX chemo she most likely won’t lose all of her hair, it will just thin.
My worst side effects were the sensitivity to cold and the neuropathy
Yeah, they’re pretty big side effects that definitely impact how you go about your day to day life.
Hello Jelena, my mother received her first folfox chemotherapy this week and she is sensitive to cold and has fatigue but nothing else. Did these effects worsen during the 2nd or 3rd chemotherapy and did you experience any spread to the lymph nodes?
Yes to both. It was a gradual worsening of the side effects over the 8 rounds I did. I don’t know how many lymph nodes were involved, but after they removed some in my surgery 5 of them still had cancer in them.
I am getting my third infusion for stage 4 rectal cancer in two days and I am dreading it. The first treatment was tough but the second put me in bed for days with debilitating nausea. I can deal with everything else but the nausea is terrible. I even got fluids twice and it didn't help. I am taking Zofran and Phenergan to no avail. I went through chemo for breast cancer nine years ago and it was nothing like this. Most of the time I just don't know if I can continue.
I’m so sorry your nausea has been so bad with your first 2 infusions. Do you take your first Zofran as soon as you get home from your infusion? Keep talking with your oncologist to see if they have any additional suggestions or meds that could help you more.
@@SurvivorJelena I leave with a pump for additional 48 hours and can't take Zofran until the pump is disconnected. I start as soon as I can but it just doesn't help. The PA says I have the best anti nausea drugs. ??
I had the pump too and they never told me anything about not taking the Zofran while it was attached.
My mother has been diagnosed with stage 3 sigmoid colon cancer she had a lower anterior resection and 21 lymph nodes were positive. I am very worried and scared she previously had breast cancer and went in remission and now this ugh she also has a pace maker how harsh is folfox? Should I change her current oncologist and go to a cancer center? She also has a pacemaker she is only 55
Has she been tested to see if she has any genetic mutations that predispose her to getting certain cancers? FOLFOX wasn’t easy, but it’s doable.
Were you able to drive to and from Chemo? Appreciate this video.
Yes, I drove many times, but I never got sleepy during my infusions.
@@SurvivorJelena I will start my Folfirinox next week and really afraid. Thank you for answering my question.
Sending you lots of well wishes as you get started on chemo next week. 💙
What are your better days after chemo. Like mostly more tired day 2-4. Trying to gauge life. I start 7/9! I have port placed tomorrow.
Days 2-5 are definitely the most tired ones. You almost feel normal again the few days before the next round.
Hi, I was just diagnosed with Stage 2b colon cancer. I start 12 rounds of FOLFOX on 10/25. Thank you for your videos. They have been so helpful to me.
I'm curious if you've heard of "Icing" to help prevent/minimize the cold sensitivity? And if yes, what you know about it.
I’m so sorry about your diagnosis. Happy to have been able to help you out during this tough time.
I’ve definitely heard of icing and have heard that many have had good results from it. Here is a link with info about it. Read Reese’s comments at the bottom, it goes into detail on how exactly to do it. fightcolorectalcancer.org/blog/chemo-oxaliplatin-cold-sensitivity/
I was wondering how many days in a row did you experience fatigue? Is it an all the time thing or during certain days of each cycle?
It was usually the first few days I felt the fatigue. By week 2 of the cycle my energy was much better.
@@SurvivorJelena Thank you for the response. I am starting chemo next month. I am 38 and just got diagnosed with stage 3c colon cancer. I couldn't believe it, I was in shock.
I have stage 3 rectal cancer and after 1 dose of iv folfox I contracted sepsis. I was very I'll for 6 weeks (which I don't remember) I was confused and lost 30 pounds. Luckily I have very few residual issues other than some fine motor loss in my hands and a bit of memory issues. Obviously we did not continue with the iv folfox.
Oh my goodness! Did they switch you to pill chemo?
@@SurvivorJelena yes. I did chemo and radiation then LAR. in a couple of weeks I'm having my illestomy reversed then once that heals more oral chemotherapy.
Hi Becky, I am so sorry to hear your reaction to FOLFOX. What symptoms did you experience when you contracted sepsis? My daughter is about to start FOLFOX and just want to be prepared for anything and everything, and watch out for serious symptoms if they develop. thanks. sending love your way.
@@eleniseberther2490 prayers for your daughter. I hope she has a positive outcome from her treatment. After my first dose of Folfox, about a week after, I had severe nausea and vomiting and became very confused. The symptoms were quite sudden. One moment I was fine the next I was totally out of it, no warning that I was getting sick. I never ran a fever, but I would not eat or drink and was hallucinating and speaking to people who were not there, mostly important people from my past who had died. I lost about 40 lbs in a few weeks. It was very scary for my husband. He finally took me to the ER where I was diagnosed with sepsis and give antibiotics. It took about 6 weeks for me to return to normal, but I still have some memory issues and fine motor skills loss a year later.
@@beckyirving4857 Thanks for sharing this. I wish the best for you.
May I ask what did u use to get a better sleep? thank you
My oncologist prescribed me Ambien so I took that the nights that I was hooked up to the chemo pump.
@@SurvivorJelena thank u so much!
Going on my 4th treatment this Monday Aug 14th 2023 i have had very minor side effects.
That’s great your side effects have been minor so far! I hope the rest of your treatments go as easily as the first 4.
@@SurvivorJelena Thank you. The sensation of swallowing glass was very strange for me. I am grateful for sure.
Yes, it’s a weird sensation that was something I’d never experienced before.
"we all know chemo sucks" lmao I couldnt have said it better.
Stage 3 Colon Cancer diagnosed last year. Hello my new Sister. How did you beat the 5yr Death Date?
Chemo class? I wish. I was told everyone is different when it comes to side effects. I was never given a list as to what to look out for. I was told not to drink cold liquids period so I didnt experiment with it the following week to see if I was swallowing glass or not. 8 months on room temperature drinks. My first side effect was my tongue, bread felt like sand paper. 2nd side effect you didnt mention was nose bleeds after my 2nd treatment that went on for 3 weeks. I told my PA about it, she said dont pick so hard. I said what? Dont pick so hard again. I told her it's coming from up here, pointed above my nose and its flowing thru my nose, its not coming from my nostrils. Her reply, go see your primary. I googled it. 80% of all chemo patients get nose bleeds.
Fatigue, that wiped Me out for an entire week. Didnt sleep more than 2 hrs at a time for the 1st 3 days after I got unhooked, I hated that fanny pack with a passion. I never thought of asking for sleep meds, I just dealt with it.
Nausea, couldnt tell you what they gave Me for that pill wise. Medical marijuana only helped a little with that. I mostly used it for making Me eat. Another huge problem.
Neurotrophy dear God. I have acute CIPN. My feet are the worse, constant pain. I was 1st treated for it around my 6th treatment with 100mg of gabapentin, didnt help, then went to my palliative care Dr who's a neurologist pain management Dr and he put Me on 2mg of hydromorphone after 3months of that I asked the same PA if she had any suggestions? Cocoa butter, so again I googled it, made my way to the American Cancer Society's website and their 1st suggestion is Duloxetine so I called my palliative Dr and asked him to switch Me to that. 3rd week in, for 4 days I was in heaven, no pain, then the 5th day I swear it came back 10 times worse than before. I took it 6 more weeks hoping it would work. It didnt so I called my palliative Dr back up and he told Me he cant treat Me for CIPN anymore, go see your primary. First my anger took over then followed by feeling abandoned by the person thats specifically trained to care for Us Cancer patients. Go see your primary is a total BS answer. I went and saw my Onc Dr. she gave Me 600mg gabapentin, 4 times a day along with hydromorphone again to take as I see fit. I dont see the PA or palliative Dr any more, go see your primary. How about you go blank yourself instead. Another complaint, I was never given the 68% live for 5 yrs, 32% dont live 5 yrs until a month ago. 13 months after my diagnosis.
So the big question is... what's your cats name?
tc Dickels
I was just lucky to beat the 5 years. I was healthy before cancer so that didn’t help prevent me from getting it, but maybe it helped keep it from returning 🤷🏻♀️ The kitty is Conan 😺
@@SurvivorJelena Hi Jelena,
I was beginning to worry about you after noticing the last comment date of 11 months. I was like Oh No, I hope it didnt come back and she's not with Us any longer. So, I'm quite happy you are still among Us survivors.
Now I feel like an Idiot. I had an appt with my Oncologist this past week and had to ask her when the 68%, 32% started? When I was diagnosed or when I got done with my Chemo? Diagnosed date unfortunately. Then she said it wasnt a death date it's a re-occurance percentage. I told her thats not what I said or what you told Me a month ago. She said it was a miss communication. I said no it wasnt but Im extremely happy now, now that I know that. Wife and family are happy happy happy.
TY for getting back to Me.
tc Dickels
Where you taking capcitabin along with your IV CHEMO?
No, I didn’t. I did Capecitabine right after my diagnosis along with daily radiation.
Do you remember CEA before surgery?? My wife diagnosed with stage 3 however CEA is quite normal even before surgery...
They never checked it until after I finished treatment 😞.
My CEA was 4.1 when I was diagnosed. Which is at the upper range of normal. I had a stage 3b tumor. During treatment my CEA slowly decreased and ended at 1.0 when my treatment was finished. It has remained around 1.0 during the 1 year since treatment ended.
my CEA at time of stage 3A diagnosis was 0.7. It isn't always elevated and is more useful as a baseline for treatment.
Do you have yearly pet scans or colonoscopies to maintain cancer free status ?
Megan DeVellis I go in 3x a year for blood tests and once a year for a CT scan. I went in after 1 year of treatment for a colonoscopy and it was clear, so they said in 3 years I would come back for another one.
What Blood test you will do for every three months?? CEA or anything??
They’re mostly looking at my CEA, but they also do a general panel of stuff like my white blood cells too.
Thank you for sharing Jelena!! This is so incredibly important for those of us getting ready to start chemo. @ynaffitbarnai 🌸🌸
You're welcome! I hope it's helpful for you :-)
I’ve only had 2 rounds of this particular treatment and for me it’s a nightmare and I’m wondering how on earth I’m supposed to get through 12 rounds of this.
I’m sorry it’s been so rough on you so far. Have you discussed this with your doctor? They need to know how you’re doing and can try some things to make it a little more manageable.
@@SurvivorJelena thank you for your response. I do tell the doctor what I’m experiencing but he’s seen it all before and just repeats that he believes the treatment is worth going through. The thing is I had stage three colon cancer and the tumor removed. The truth is they don’t know if I have any cancer cells left in my body or not and they don’t Know if chemotherapy will prevent a reoccurrence. It’s really hard with this information to push myself through this because I feel like I’m being poisoned, And then there are all the long-term side effects that may or may not go away.
@Blue Raven have you considered getting a second opinion? If you don’t feel like your oncologist is listening to your concerns it may be worth it even though you’re already partway through treatment. It’s ultimately your decision on what you want to put your body through.
@@SurvivorJelena I went to get a second opinion at MD Anderson before commencing any treatment at all.
@@blueraven2345 How are you doing nöw..l hole all is well.. .. and Thanks for sharing.
Does it make you loose your hair?
My hair just thinned, and most patients don’t lose all their hair.
Hi