Chemo treatment experience /help

I personally had the port put in when I received my folfox Treatments due to the fear of my vein being blown out, chemo is very hard on the veins, the port surgery is simple and when you have the port it’s so easy for the nurse to access for chemo or any blood work.I always ask for lidocaine to numb my port before they accessed it and you never felt a thing. Does make life a little easier especially when your constantly having your blood work done. Hope this helps, Take Care and God Bless!

Hi,

I was suggested by multiple oncology nurses that a chemo port is better to have. Also my oncologist's suggestion was to have one so I am having one. Some tips:

1- Discuss with your oncologist and surgeon if you want to have it on your left or right as it may matter if you are driving.

2- You will abstain from sudden/strong movements on that arm as long as you have the port. This means no to tennis and golf etc similar sports.

3- My port is being solely used for the chemo and not for taking blood etc. The nurses abroad (I’m outside the US) are afraid that there may be an infection so they install and remove the infusion (the bottle with the chemo liquid such as 5-FU) very carefully with a strict protocol.

4- I wear it roughly for 50 to 54 hours and where I live a nurse comes home to have it removed. If you will go to an ER to have it removed, then it would be 46-48 hours. Sleeping is a bit difficult at the beginning but you get used to. You will not have a shower during that time but I always washed my body and hair as much as I could.

Chemo side effects are different for everyone. I never vomited (unlike my mother who had a horrible time on her death spiral decades ago) but whatever existing health issues you have, make sure to remember them in detail and communicate these to your oncologist. Something minor (very mild tinnitus) could get much worse as it did in my case with oxaliplatin so we had to stop it after I had serious hearing problems. Luckily I had a slight recovery afterwards…

My humble suggestion is, understand your treatment and listen to your body - do not just leave it to doctors assuming they would know everything. I am not doubting their qualifications. It’s just that you may experience very rare side effects like I did and at that grey zone where medical data is rare, managing things could turn into a full time job with critical consequences.

Best wishes.

I went through 12 rounds of “5FU” I wasn’t given the option for the port. I would say the port is convenient, mine is still uncomfortable and going on 2 years end of Jan when it was placed in! But well worth it for sure besides always having a constant reminder. Make sure to Use the cream to help prior to an infusion. I would recommend getting a bag of fluid when you go back for removal of “purse that was always at your side!!” The bag of fluids helps especially when you start to notice cold sensitivity which is no joke! I currently still have issues with peripheral neuropathy and at times my tongue gets uncomfortable with cold drinks and food. Stay strong, stay positive and listen to your body during this “ journey!” You got this and good luck

I had 10 inches of colon taken out to remove a cancer tumor just last September and biopsy showed only 2 out of 36 lymphnodes had cancer cells within the 10 inch section and my oncologist told me I was stage 3b and said I needed to start the same chemo you mentioned. I asked if there was a test to show if I still had cancer cells in other lymphnodes aside from the pet scan that was done before surgery that didn't show any signs of spreading and she told me there was no test for microscopic tumor cells which turned out to be wrong. There is a test called Signatera aka ctDNA aka liquid biopsy done by Natera. Stangely I found out others in her clinic were aware of this test and had ordered it for other patients. So I had the test done and results came back 3 days ago and was negative so I really didn't need chemo as no circulating tumor cells were found. With my low kidney function from having to much contrast dye from ct scans for kidney tumors I had removed in February prior to colon surgery I would of been at higher risk of kidney failure that chemo can cause with my low kidney function. Yet the oncologist tried to convince me I would be committing suicide without doing chemo. I strongly recommend you and anyone have the ctDNA test done after surgery before deciding on doing chemo or not as side effects can be harsh and 60% of colon surgeries remove all the cancer statistically. No sense taking toxic chemo drugs that kill you own T cells and immune system if you no longer have cancers cells. Do not be scared into doing chemo as some oncologist put profits from chemo before their patients health. Also recently FDA approved an ultrasound treatment last year for liver tumors that has high success rate offered by HistoSonics. No invasive surgery required as the ultrasound device is placed over the area of tumor and the ultrasound wave breaks the tumor surface apart allowing your own Tcells to kill the whole tumor. HistoSonics will be doing other clinical trials to get approval for other types of cancers so might be an option to look into to get in a clinical trial if need be.

Mayslee,

It’s critical that you have easy access to your oncologist. Discuss your hardship with her/him in detail and do not assume “x side effect is normal” write down everything no matter how trivial.

Chemo is different for all people, I had a very tough week 1 and super tough week 7 out of the eight. Chemo's onboarding is difficult and the last two weeks may be tough bc of the build-up. Make good use of your pills to handle side effects.

Chemo port is non-issue. It helps you without bothering you. I used to hang the bag on my neck and cleaned my body, not a problem at all.

Eight is usually the minimum number of chemo sessions so don’t expect it to be less. What you want is to be free of cancer cells. It is normal that you will hate chemo but after everything if you have some (hopefully little to none) cancer you will beg to your doc - "give me more chemo” Chemo is a transitionary period during cancer treatment. Believe me having no cancer after all is much more important that the hardship of the chemo.

Signatera means the amount of tumor molecules in your bloodstream. It is helpful for post treatment follow-up but not so critical during the treatment.

It’s possible, likely that for your oncologist the order of importance will be:

a) Pathology

b) Visual report of the colonoscopy

c) PET-CT

d) MRI

e) Liquid biopsy

You are stage 3, what matters most is to stop further metastase and then kill the locally metastased cancers and then the original tumor. Folfox is a good regime and hopefully it will destroy all cancer cells. Be careful with oxaliplatin - it is very strong but it may have also serious side effects.

If you want do an MRI around week 6 to see how it’s going. Your relationship with your medical oncologist is the most important thing in your life right now.

Note: This was for my TNT regime, stage 3 rectal cancer, radiochemo first, iv chemo later and a possible surgery.

Are you having any issues with eating or drinking cold things? That usually kicked in during the the last 30 minutes of the infusion and lasted longer and longer after each treatment. My hands first I noticed that I couldn’t hold eggs in the store then it progressed to cold water. My daughter made covers for the hot water nozzle so it wasn’t cold to turn on and you just have to wait for the water to warm up. The only time I had an extra week break was my numbers were low then they started me on a growth hormone shot for the rest of my treatments. My feet started at round 10. Not to scare you but both my hands and feet still have neuropathy and I completed treatment Aug 2023! Positive thoughts I am here!! Stay strong and keep up with taking your pills for nausea! Good luck you got this, I had stage 3 too

Mayslee, this is likely to be peripheral neuropathy (I’m sure you were told about this) and it may go away after your chemo but it will likely to get worse during your additional chemos. However there’s the risk of it becoming permanent. There is a member here suffering from extreme side effects caused by PN that appears to be permanent. Believe me you wouldn’t want it.

Oxaliplatin is a very strong medicine and in the case of very severe side effects it may cause various disabilities but you can stop taking oxali. Discuss this with your oncologist, and even with another oncologist and also a neurologist - if you continue taking oxali you may better assess and monitor the severity of this nerve attack.

I totally disagree with him/her saying there isn't much to be done. I saved my hearing and sanity by stopping oxali (in my case it made my tinnitus much worse and I was to become worse than a deaf person - unable to hear properly but non-stop hissing/metal screeching sounds in the ear due to severe ototoxicity) and I’m doing quite fine right now. For example oxaliplatin may be replaced by a modified irinotecan in (without oxaliplatin) Folfirinox which is slightly less effective but still does a good job - discuss this with your oncologist asap please.

It is critical to have access to open-minded oncologists who would aim and try to avoid disabilities and would choose them only as a last resort. Dropping oxaliplatin would reduce your survival rates (in my case a different oncologist suggested a 5% reduction in 5 year survival) but you may not need that 5% as I did not.