A friend/neighbor was diagnosed with CC and she'll be starting chemo on Tuesday. I'm here because I want to support her on her journey. Thank you so much for sharing.
Dear Jelena. I´m a 70 year old male with colon cancer removed a year and a half ago, but metastasized to the liver a year later. I´m currently getting my fifth infusion of Folfox. I have felt all the side effects you mention in this video, even to a point of almost asphyxiating one cold afternoon just by breathing the cold air outside. I had to run inside the house to breathe warm air, but that was a very scary 5 minutes experience. All aside, my main problem currently is not wanting to eat because of all these side effects, I simply can´t eat or taste any food, I have no apetite. Every single meal is a challenge, even drinking liquids at warmer than room temperature. I certainly miss the ice and cold water, but I know there are sacrifices to be made to keep on living. Bless you soul for sharing you experience with the world.
Do you get relief from the cold sensitivity for a few days in between infusions? Winter is definitely not a fun time to be going through FOLFOX 🥶 but we can’t pick when cancer decides to rear it’s ugly head in us.
Well, in my case the feeling is permanent but thanks God very mild. I always wear gloves and socks and jackets, but there were a couple of times when I forgot them and had to wash my hands in a public grocery store. The water was cold and I not only got the broken glass feeling but my hands were literally paralized instantly, like a figure in a wax museum. It only lasted like 15 minutes while I warmed them up and came back to normal. But as I said before, the most troubling side effect of Folfox is not being able to eat regularly. Everything tastes like medicine and I lost appetite for everything.
I just wanted to put this out there for anyone else who ends up with the same experience. My first round of folfox sent me into the ER with a weakened immune system. 5-FU was still killing cells in my body 2 weeks after disconnect. It turns out 2-8% of people lack an enzyme called DPD. This enzyme is required to break 5-FU down and excrete it. If you don't have this enzyme you only clear folfox from your system at a 15-20% rate. If this happens your doctor has to reduce your dose. So if you start getting sick during treatment don't wait, go to the ER just in case.
Yes, this is very good to know! I’ve only heard of 1 person that has this so it is uncommon, but definitely a good reason to take any side effects you’re experiencing seriously and talk with a medical professional about them.
I had exactly the same thing. Initially started on capox 100 percent dose. 9 in and out of hospital. So they took me off it. Had it one more time at 75 percent dose then I got colitis 10 days in hospital. Completely stopped capox. The folfox. Did 6 cycles of that at 50% dose they stopped the last one had way too many side effects to finish treatment pericarditis, long lasting nerve damage, a lot of hair loss with folfox but it was way more gentle than capox. They stopped my treatments sighting risk versus benefit. Lost my finger prints. Cold was the worst. Glad it’s behind me. The things they tell you but you think won’t happen. I’m thankful for great healthcare workers. Medication for nausea and pain relief. My fantastic friends. Thanks for making these they actually help prepare you for what happens.
My husband got diagnosed with rectal cancer stage 3 a few days ago 😢💔 Tuesday we are scheduled to meet the chemo & radiation doctors . I am soo glad I came across your video. His doctor asked for an MRI and noticed it had spread to 2-3 lymph nodes and maybe even the muscle. She was talking about doing chemo/radiation first and then surgery. She also said after surgery he would have to use a colostomie bag. Was that your situation too? 😢💔🥺 Breaks my heart to see him so devastated. I talk to him and motivate him so much he has our babies to fight for and kick cancers ass but this news really broke him 💔😢🥺
I am so sorry to hear about your husband. Yes, mine had spread to lymph nodes and I did chemo/radiation first to try to shrink the tumor as much as possible, then it shrank enough that for surgery I ended up with a temporary ileostomy that was reversed 7 months later. If the tumor didn’t shrink I would have ended up with a permanent colostomy. It is definitely devastating to get a cancer diagnosis and it’s perfectly normal to go through a whole range of emotions. Just showing him that you will be there to support him through all this can go a long way to help him feel like there’s at least one thing in life right now that he doesn’t have to worry about. Sending you both big hugs 💙💙
Jelena, you should be so proud of yourself! I just can't imagine how you maintained good levels of motivation and energy to cope with this. All of these side effects after multiple surgeries, it must have been utterly exhausting. But, you've proven it is possible, and I think anyone who is watching this and going through a similar experience can take comfort in knowing that.
Aw, thank you so much. Not every day was good, but I’m more of a “glass half full” person so it’s just natural for me to just put a smile on and look for the silver linings.
Jelena, today I found out I have stage 3 cc. Thank you so very much for sharing your story. I hope I can be as brave and positive through this ordeal as you have. ♥️
I’m so sorry, Lisa. I wasn’t brave and positive everyday, so don’t be afraid to let out all the emotions you’re feeling. Sending you lots of love as you begin dealing with treatment 💙
@@SurvivorJelena Thank you. You are an old soul and your spirit is bright and shines through. ♥️♥️ Your videos are so helpful and I am thankful for you.
Hello, everyone, I would like to offer a word of advice to all fellow patients watching 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 you 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 your chances to be cancer free for the rest of your life! P.S. I just started the cycle No.3 out of 8 of FolFox and my oncologist decided to reduce the dosage of 5-FU by 20% and oxaliplatin by 10%. I have had severe diarrhea from the first drug and neuropathy (numbness and pins and needles sensation in toes and fingers on hands and feet) from the second drug. Diarrhea appears to have resolved for now, I’ll report on neuropathy later.
Wow Jelena! After all you've gone through, and you remain positive. You have a beautiful spirit, and I thank you for sharing your journey with us, the good and the bad. I truly will continue to stay in contact with you. You are an inspiration!
I was diagnosed in Oct I have had my entire colon removed I had my 7th round of Folfox this past week. You have listed my side effects to a T my worst is the first bite syndrome. I have been able to work and have had no nausea thankfully Thanks for info
Sorry about your diagnosis. Happy to hear you’ve been able to continue to work and the side effects haven’t been too horrible. Are you doing 8 or 12 rounds of FOLFOX?
I have stage 4 colorectal cancer and have completed 2 Folfox treatments. The hazmat comment is hilarious, that’s exactly how I felt when they gave it to me. The jaw pain lasts for the first 5-6 chews for me. I also have lower back pain and recently knee pain. The back pain extends to my tailbone from the pelvic muscles. I feel like it takes your previous injuries or aches and pains and amplifies them. Great content, thanks for sharing.
My sister is 33 years old and got diagnosed with stage 4 colon cancer, she had 2 surgeries, she had her ovaries ablated in the first surgery then chemo, then a second surgery "hemicolectomy" and now she is in her 3rd month of a Folfox chemo and still 3 months to go. She is experiencing the same side effects that y've mentioned, so I know how irritating and tiring this treatment is. I pray for you and my sister and all cancer patients to heal and get well very soon.
I am so sorry about your sister. Sending love and strength to both of you as she navigates this. I hope the FOLFOX does it’s job of killing the cancer in your sister 🤞🏼💙
Jelena, I am a Stage II: T:3, N0, M0. I guess the new treatment is chemo and CRT before surgery (total neoadjuvent therapy). I start FOLFOX on 12/29. I have been watching your videos nonstop for the last month. Thank you for all that you do and for preparing me for the road ahead.
i was diagnosed with sigmoid colon cancer a few weeks ago and I underwent surgery to get rid of affected colon. Out of 17 lymph nodes that were removed, 2 had cancer. And I have an appointment with oncologist next week to devise the treatment plan, that I am sure will include chemotherapy. Thanks for the video and look forward to any guidance.
Im currently on cyle 8 but have 4 more to go. Diagis osed with Stage 3 stomach cancer. Tumor has shrunk to not detected on Tumor marker (ill-define and kess conspious) was on Ct report and lymph nodes have shrunk back to normal..no spread. I feel just fine...i eat 3 to 4 times a day with no pain...healthy eating..blood works always good..WBC count goes anywhere from 4.0 to 7. I am on my way to full recover and Healing. Was you diagnosed cancer free?
Just to let others know, my pump was much less complicated. It looked like a lemon, had no tech stuff to deal with and I disconnected it at home. Thanks so much for the videos.
Hi, I just saw my oncologist yesterday. She informed me I have stage 4 metastisis esophageal cancer. It has spread to all lymph node regions. So the plan now is to put me on folfox plus nivolumab (which is an immunotherapy) I'll have to have a port installed in my chest so it will save them constantly finding a vein to canulate.
The port makes getting poked by needles SO much easier. FOLFOX will damage the smaller veins in your arms too and make it really difficult to access them the more rounds of chemo you have in them. Good luck 💙
@@SurvivorJelena I have been reading up on the drugs, any tips on water liquids to drink or just leave them out at room temp. I'm just wondering if I will still be able to pick up my little pug for a hug.
I had my first cycle this week, - first of 12, just got disconnected from my siamese twin. Fun going to the loo in the middle of the night. I feel like it's my baby doing obs checking if the rate is alright. The room is just right not to cold and not too hot. Should name it Goldilocks. I felt the cold buzz right away; I also use a straw to drink, it seems to relieve the sensation of shards of fibreglass as I swallow. I need gloves, also invest on some cardigans or zip up hoodies for easy access to the port. The joys of a new learning curve. I will get through this.
Thank you so much for these videos! My dad has stage IV colon cancer. He’s 74 and had multiple complications with surgery, including septic shock and almost dying 3 times. He got his port today and starts chemo next week. They’re calling it palliative chemo, ie low dose. I’m so worried about side effects still and can’t find anything about “low dose chemo.” Any thoughts greatly appreciated. I don’t want my pops to suffer anymore than he already is. 🙏
Oh my goodness, I'm glad your dad managed to pull through after all of that! It sounds like he's getting the standard chemo just at a lower dose to minimize the side effects. Keep close track of all the side effects he experiences during his first round so you can bring them up to the oncologist. Hopefully, it won't be too bad and he'll just have some fatigue and maybe minor nausea and cold sensitivity that will go away after a few days. If he's doing FOLFOX the oxaliplatin part is what causes the worst of the side effects so that is most likely what they're reducing or will reduce more if the side effects are too much. Best wishes to you and your pops 💙
My mom had last week first FOLFOR IRI therapy. Similar as you have explained, pump was not mechanical it was some kind vacuum device. My mom did great and I am so proud. She didn't use any of nosia medicaments. You didn't mention nothing about illiostomy bag content during or short after chemotherapy. I know it is not nice but I am wondering was is more liquid as before? Dr. told us that mom has to dring a lot of water during and few days after treatment. Also my mom experienced disiness day after pump finished... Dr. told us yes this can happen. I am so happy to look at your videos because I learned a lot and if I forget something I just go and look at it one more time :) Thanx for all your advices... God bless Have a great weekend, 👋🏻 from Germany...
That’s great your mom handled round 1 pretty well! Does her pump look like a small balloon? Yes, there would be a little more liquid output than usual during chemo since it usually does cause diarrhea. Happy to have you watching all the way from Germany! I spent 3 months there during college and loved it. Can’t wait to return one day 😀
@@SurvivorJelena yes like a small balloon with some white cylinder inside. It reduces its size till end of second day... Glad that you enjoyed Germany, it is nice country. 🙏🏻
I was diagnosed with Stage 1-2 pancreatic cancer about two weeks ago. I have a port to be placed on 8/9/23, and then start folfox the following Monday on 8/14/23. I am 71 yo and my life isn't the greatest, but there are things that I really enjoy still. I was going to marry a woman and adopt her two daughters within the next year, currently the thing in life I wanted to do most, and I don't see that happening now. So I am going to go from a "normal" life to this?? Sounds worse than horrible and the change is so sudden and drastic. People here talk about all of this so objectively, and Jelena is so chirper even when talking about the worst of it. I really don''t know which would be worse, going through treatment (3 months chemo, 3 months Whipple and recovery, and then 3 more months of chemo) and watching my body turn into a repulsive walking corpse, in pain or vomiting, not able to enjoy food really anything, or just enjoying the time I have left (no matter how little) with no treatment and actually enjoying a few things for a little while. What a terrible choice to have to make.
I had never heard of icing while I was going through FOLFOX, but I have only heard mixed anecdotes about it working for just a few rounds, no medical studies yet.
When did you have the port installed? Were you able to drive home after your port chemo treatment? Right now my doctor has me drinking “Impact Advanced Recovery” by Nestle. Preparing for surgery. If COVID will open up my hospital.
I had my port implanted exactly 4 years ago today (Dec. 5, 2016), then my first day of chemo was on Dec. 13. Yes, I was able to drive myself home after chemo treatments.
I did and it was in my feet. I did acupuncture, exercise, massage, compression socks, and just impatiently waited. It did finally go away, but it took almost 2 years for it to be completely gone.
Hi I too have been diagnosed with stage3 colorectal cancer and currently on Folfox. Was this given to you as palliative or adjuvant therapy? If possible, can you share with me the details of your oncologist. I would like to contact him/her for a second opinion.
I did FOLFOX as an adjuvant treatment. I’m not sure where you live, but I would recommend contacting a large cancer center in your area for a second opinion.
I have been recommended 12cycles of Folfox as the standard goes but since I heard you had 8, I wanted to take a chance and know if my cycles could be reduced. As chemo has taken a toll on me.
I recently have gone through 6 loads of folfox,each kombined with a stay in Hospital for 3 to max 6 days/nights because often there was something which didnt go aß easy as planned...on january 7 i get "my"LAR....and i ll get another 6 loads of folfucks ...a long way but it will be for good..
Oh no...in most cases there were organisation issues or low white bloodcells..i had nearly no side effects..but Fluorouracil is cardiotoxic and i have a heart abnormity..Chemo itself went very fine with me.best wishes for you from munic/germany..i often onwarded your Channel to my friends..
No, I didn't, but I didn't have much day to day pain. Just when the needle was inserted for blood draws/chemo, or with over the head arm movements (which I just tried to avoid doing).
My wife Judy starts chemo in another week ...she's stage 3 rectal just recently diagnosed....my wife's scared myself also for her ,this has all happened so quickly !!
Being diagnosed with cancer is scary. I found just talking about my fears out loud with my husband helped a bit. You can also reach out to her cancer center to see if there are support groups you can go to or if they have some type of counselors you can talk to.
