Rectal Cancer, Stage 2, almost 41 yrs old...hating the chemo!
Just saying hello.
Hating the Oxiplatin infusions...they are creating serious panic! Xeloda pills effects aren't as bad, but worry about long term damage.
Am I a big baby or is chemo painful as hell to anyone else???
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I had all 12 of the FOLFOX, and there were side effects, some lasting a year and a half, but I never felt panic directly related to them. At diagnosis the doctor offered a script for Xanax, I figured 'why not', and have kept that med since. It does ease the worst of panic and anxiety. The long term of all of it is still to be seen for me. I was 49 at diagnosis, and finished chemo by my birthday, [and went straight to Vegas, lol], now I'm 63+ and NED for over 7 years, with no signs of damage from chemo or all those CT's and PET's yet. Who knows what will come, but I'm happy to be here and clear. Lots of folks were damaged, and/or had to stop chemo, so your nowhere near alone with having troubles with it, I'm sure they'll be along to tell you their story, I just got as lucky as one can get with it, and it still sucked. Hang in there...............................Dave
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Hey! My husband's situation is similar to yours. He was 44 when he was diagnosed, in May, with stage 2 rectal cancer. The Oxaliplatin infusions were rough! He really dreaded them. I'm not sure if it is available where you live, but medical marijuana was a big help for him. His oncology team was able to get him set up with the paperwork he needed to access it. It helped ease some of the pain. It also helped him to sleep through the worst days right after the infusions.
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Thank you for the reassurance! Helpfully to know I'm not alone and what works for others. I really appreciate that!!!
Treatment 3 of 6 is tomorrow. Bring soaking up every wonderful Chemo free day!
Anyways...God bless your family:0)
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Chemo is not fun, but, if you make it through to the end, and find yourself NED (No Evidence of Disease) then it will all be worth it.
But, some of us don't walk away without some kind of long-term side effects. I have several, but I will take all of them and be alive and happy - which I am.
No shame in hating it, or feeling like 'a big baby'. Know your limits, and call it a day, but only after you've given it your best shot. Life after chemo is good, and worth a certain amount of 'no fun'.
Tru
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Thank you, Tru!!! Now I know what NED means...lol. I know I could have googled it, but trying to take the info in stride.
The words of reassurance and hope for the NED are so appreciated.
Glad to know the other side will be sweet, indeed.
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Chemo is hell. You are not alone in that opinion.
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Take it one day/infusion at a time. I always told myself it could be worse. Take the downtime to reflect and prepare for life after chemo! I did chemo, radiation with chemo, lower anterior resection with ileostomy and then had the ileostomy reversed about six months ago. I have some lingering side effects from the chemo but don’t spend a lot of time worrying about it. I can’t change it, so I choose play the hand I have been dealt. The thing that helped me the most was prayer. I didn’t pray for healing, I prayed for peace. Keep your head up and this will soon be just a memory!
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I was lucky in not having much pain from chemo, other than muscle spasms and cramping. On FOLFOX I had the cold sensitivity which would hurt for sure. I am now around 60 rounds of chemo of various types. I am sort of a connoisseur of chemo. Probably would be more fun to be a wine connoisseur, but my palette is not that developed 😉
I get chemo brain and a lot of fatigue from all of this. I was in a drug trial the second half of 2021 and it was chemo every day, though the first week of every 21 days was the toughest because those were the days I was on two drugs.
Anyway, one of the things that helps me is focusing on how I feel when I am off the down parts of a chemo cycle. So when I am feeling really bad, I try to remember that it stops, though when you are in the middle of it, it is not easy. Meaning - I have an infusion tomorrow (I actually do, not just a hypothetical here :)) . I know what is going happen for the next 7 days. I know how I feel today, which is the furthest time from last infusion. I feel real good. And I know I will be fighting with myself for the next week convincing myself to remember it gets better.
The second thing is that I keep on saying (in my mind ) that if I have x bad days, but then a run of good days, I will take it every day knowing the cancer is at bay. There was only one time in the last 7 years where I got so violently ill that I was thinking it was too much. That was after my first session of FOLFORI. We never did figure out if it was that which caused it, the bad days were 9, 13 and 15 days out from the infusion so it was strange, but the dose was dropped and never had another issue.
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60 is a lot. I agree with your sentiment completely about the better days! The last round, I only felt good the last 7 days before this next round. Which wasn't as severe as last time, thankfully. I've always been sensitive to medications, so I guess I'll just be grateful that I only have 3 infusions left.
But I wish you best on your journey and appreciate your sharing with me.
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Prayer has definitely gotten me through this whole thing! Thank you for sharing your experience with me. I appreciate everybody's wisdom and words, they do help. God bless you and yours.😊
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i did 9 rounds. The first half were not to bad other than fatigue and diarrhea. The last 4 or 5 sucked, and I was sick and tired of feeling sick and tired. I tried to stay active and sometimes over did it. The good news is they will end, and you will get to feeling normal again. I was stage 2 rectal cancer. 5 day radiation, 9 rounds of Folfox, and an APR surgery, and I’m in survivorship mode now. I’m four months out of surgery, and fully recovered life is good again and other than tingling feet, I’m pretty much back to normal. Hang in there it can be done and you will move on. I was 44 when diagnosed. As they told me early in the treatments, you will look back and this will have been a moment in time you had to get through. And they were right. God Bless, and hang in there.
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Oh and absolutely prayer will get you through the tough times. Funny how I also prayed for peace and I always found it trial after trial through this whole ordeal.
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100% get a port if you dont have one. It'll ruin your arms. Ports are very easy, just require tylenol for a day. I do have problems with my feet since chemo and my face and hips since radiation. Dont worry so much about what hasnt happened yet. Focus on getting rid of the cancer first. You can worry about the rest once youre cancer free.
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ForMyGirls2, may I ask...have you had issues with vag stenosis from radiation? Did you use dialaters?
Thank you for your encouragement!!! It is so needed and appreciated!
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Sorry Stoned Camaro, I am a male, so can’t give you any insight on that. Hang in there though it will get better.
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I have vaginal and rectal stenosis, caused by radiation.
I tried using a dilator, but it was just too uncomfortable for me, because along with the stenosis, I had thinning of the skin, so anything used in that area can cause ripping and bleeding, including toilet paper.
Sex and stimulation in that area became a no-go, which was sad; but I'm alive, and both my husband and I are grateful for that. I use a Bidet to cleanse, and I am careful - sometimes I forget, and even now, eight years later.
Life goes on - and oh, how grateful I am for that. Too many others are not here to say the same. I will take the side effects and be grateful for my life.
Good luck as you move forward with your Cancer journey.
Tru
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