daughter post chemo but having problem

[suezav]

hi everyone. my 23 year old daughter finished chemo on may 22nd. she was dx 4/05 with stage 3c rectal cancer with 6/16 positive nodes. she had chemo, surgery, radiation with continuous 5fu and then 8 more chemo treatments. about a week after finishing treatment, her lower back (near the coccyx area)started to swell. the oncologist sent her for a CT scan which, thankfully, came back clear. we were then told to see an orthopedist. he couldn't figure it out either. x-rays were normal. he said she needs an MRI. in the meantime, my daughter was examined by her oncologist and surgeon. they were not concerned (of course, that day her back was less swollen). they don't feel she needs the MRI. i feel we should leave no stone unturned and finally talked her into having the MRI. it will be scheduled as soon as the insurance approval comes through.

in the meantime, now her legs seem to be retaining fluid. in the morning, her legs and back are pretty normal, but as the day goes on they get more swollen. she is sooo frustrated, figuring the end of treatment meant that she could start working out and getting back into shape.

cancer dad, i know you've had many many side effects from treatment. have you experienced any low back or leg swelling? is this a common side effect post chemo? her docs seem puzzled but i find it hard to believe that with all their patients who have had this treatment, they've never seen this before?

any help would be so appreciated! susan

p.s. she still managed to graduate from college on may 18th, on time and with honors!

[christy217]

When I was reading this in the beginning, I was wondering if it was the same girl that recently graduated, you replied to one of my other posts a while back, anywho, I am not CancerDad, but I can tell you that I have recently started chemo-5FU, Leucovorin, and Oxaliplatin, they also give me neulasta and aranesp to help my blood counts.

A few days after my first chemo treatment, which is all I have had thus far, I go Tuesday for number 2, my bones started to ache, severely sometimes, it feels almost like a muscle spasm but in your bones, specifically my legs and hips.

I agree with you, to leave no stone unturned, however, I am not a doc, but my cancer never showed up on a catscan, and neither did my dad's, mine was Stage IIa, a PetScan is the best bet when looking for cancer, as I have been told by my docs and have read literature on it as well. MRI's are good, they show tissue and blood vessels more.

Regarding the swelling in the legs, I've heard this from a lot of patients that are on chemo of this regimen, I have also heard that once chemo has stopped some patients have experienced the water retention in their lower extremites. I don't have this problem as of yet, but I am concerned about it down the road.

Good luck with everything and tell your daughter she is a trooper! God Bless the both of you.

[suezav]

christy, thank you for responding to my post. i think i have written to you before. i am always impressed with your energy and attitude. good luck with your next chemo. emend and zofran are the 2 drugs that helped my daughter the most with the nausea. hope you have more manageable side effects this time. god bless you, too. susan

[hiswife1]

Your daughter is an amazing person to be able to finish college while going through treatment! My husband has been back on chemo for 7 months now. His first round was for 6 months and then he was off of it for 6 months. During that time he still had side effects that would kind of come and go. He was told that it would take at least a year for him to really get back to being himself. Since he had to start back on chemo withing 6 months we never got to the point where he "felt like himself". I think it is a good idea to have tests done to see why she is swelling. That way they can maybe give her something that will help. Good luck to her and take care of you also.

[CancerDad]

Susan:
I have chronic rectal region pain that radiates and is sometimes worse in the lower back/coccyx region flaring to the buttocks/hamstrings and hips. Characteristic of chronic pain is its worsening by the weather-- typically I am more reliable than our local weatherperson about when it's going to rain!! I have been told by many specialists that the massive radiation I endured did significant damage to the tissue. They don't tell you ahead of time what severe damage radiation and chemo do, but had I known at the time, I still would have chosen to receive it... what choice did I have?

So, radiation/chemo damage to the tissues, together with the removal of lymph nodes and lymph channels can cause swelling of the legs as lymph fluid builds up. My oncologist was very blase about what caused the damage and severe pain. But after seeking MANY expert opinions, I was told it was the severe pelvic trauma I suffered (evidenced by my pain, inability to urinate, and inability to perform sexually despite ANY meds or therapy) together with the radiation and chemo damage. I don't believe that your daughter has been on other newer chemo agents right???... I think she has been on 5FU/Leucovorin mixture... not oxaliplatin and/or irinotecan. But in any event, I do believe she received radiation like is typical therapy with rectal cancer and chemo and removal of nodes, which can cause chronic pain and swelling.

Please make sure she knows she is NOT going crazy... After effects of cancer happen ALL THE TIME, but are seldom talked about. Also, pain is a subjective thing. Only SHE can say how much pain she has and whether she needs medication to help her live her life. She may experience more pain now, or five years from now... it's a common phenomenon. Should she require stronger medication, it should NOT be an issue given the fact that she is a cancer survivor. Unfortunately, other chronic pain sufferers who are not cancer survivors have to face other battles with getting appropriate medication therapy due to stigmas of abuse. Bottom line is, anyone who suffers from chronic pain often has to battle social stigmas and ignorance by people who are not educated on pain and believe that people become "addicts." There is NOTHING farther from the truth. Just like ANY medication, our bodies become physically dependent, but rarely do cancer survivors use stronger pain medication to "get a high." Most people in the medical profession are coming around, but you even find ignorance in the medical arena.

She may want to see a rehabilitation specialist who know that she is probably experiencing multi-focal pain where different types of meds are needed... anticonvulsants/anti-depressants for nerve pain and narcotic analgesics for trauma/surgical/lymphatic pain. All this is also referred to as "cancer pain." A rehab specialist will also be able to prescribe physical therapy which will help. The sooner she does this, the better. Without getting into a long explanation, it is believed that the longer nerve fibers receive and interpret ANY stimuli as painful, leads to ingraining in the nerve where this is ultimately the ONLY signal that is transmitted and received in the brain as pain.

I hope all this makes sense and I wish her the best of luck.

Regards,
CancerDad