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Old 06-18-2006, 06:22 PM   #1
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suezav HB User
daughter post chemo but having problem

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!

 
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Old 06-18-2006, 07:26 PM   #2
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Re: daughter post chemo but having problem

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.

 
Old 06-19-2006, 06:38 PM   #3
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Re: daughter post chemo but having problem

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

 
Old 06-20-2006, 08:09 AM   #4
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Re: daughter post chemo but having problem

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.

 
Old 06-20-2006, 06:50 PM   #5
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CancerDad HB User
Re: daughter post chemo but having problem

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
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Old 06-21-2006, 06:51 PM   #6
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suezav HB User
Re: daughter post chemo but having problem

thank you, hiswife, for writing. i hope your husband gets back to feeling like himself once he finishes chemo. i wish you both good luck and good health.

cancerdad, once again you are an amazing resource. do you have a medical background? you sound like you do. anyway, my daughter did have oxaliplatin along with the leucovorin and 5fu. she also had 6 treatments with avastin added in because they incorrectly thought she was stage 4. that was before surgery. she has alot of medical knowledge (she's actually thinking about med school one day) and we both feel the swelling has something to do with the lymph node removal and the radiation just as you explained. so how come her wonderful surgeon and oncologist didn't mention this? we have the utmost respect for her team but i am disappointed that they are clueless about my daughter's current situation.

CD, i am curious as to how much radiation you had. i am sorry the effects have been so devastating to you. my daughter had 6 weeks of radiation, 5 days a week with the continuous infusion of 5fu. she said it was the most awful and difficult part of her treatment.

one more thing. although she did experience some pain when she first developed the swelling, it has since subsided. it's the swelling which is so bothersome to her. she has decided to start a walking program and if her back doesn't get worse, she will slowly start exercising. luckily, i work as a rehab coordinator for the visiting nurses and have many wonderful physical therapist to get advice from.

perhaps the MRI will shed some more light on what's going on. cancerdad, since you and my daughter were both dx with the exact same stage and cancer (even the same number of positive nodes), i appreciate your "words of wisdom" very much. i know you've seen many doctors and have done alot of research and i have learned alot from you.
susan

 
Old 07-01-2006, 10:42 AM   #7
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Re: daughter post chemo but having problem

Sorry I am just catching up on reading some posts. I am 31, and finished Chemo almost 3 months ago now. I was stage II colon (no rectal involvement) I did have the Folfox Chemo, but no radiation. I find some of the same angst and problems as your daughter has had. Like her I am really trying to get back to my normal exercise routine (which was 5-6 days a week) and I am having a lot of swelling in both feet, ankles etc, it worsens as the day goes on, but i am on my feet alot, I also have had facial swelling and swelling in my hands, so bad that they cramp and get sore. My oncologist, just kind of says Hmmm, and that's about it.

However, I am a physical therapist by trade, and just this week I spoke to a colleague of mine who does Lymphadema massage and management, and says she gets ALOT of cancer patients in her practice with the same problems and has had success with compression wrapping and massage. She has offered to treat me and said in my case that it probably wouldn't require too much treatment to get it to resolve, Just something you might want to look into.

 
Old 07-01-2006, 02:55 PM   #8
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CancerDad HB User
Re: daughter post chemo but having problem

Susan:
I'm sorry, I must have missed your posting somewhere??
Anyway, thank you for your nice words and encouragement. Some days you need to hear it more than others. I'm sure your daughter understands.

My oncologist acts the same way and denies that radiation does any damage. He really is a good oncologist, but I find that SO MANY of them flat out deny these side effects. Had I known about the radiation side effects, I still would have received treatment. What choice did I have? And the adverse effects have been confirmed by other specialists I have seen, so I know I'm not crazy!

I believe I had 8 weeks of chemo/radiation (5Fu/Leucovorin/Oxaliplatin) pre-surgery and then a couple months of just aggressive chemo post(Saltz Regimen Camptosar/5Fu/Leucovorin. I had to drop out post b/c of the side effects)... but it depends on how many rads??? (I'm sorry, but I'm in a hurry and don't remember what you call the cumulative amount of radiation) she received. I know I was told I was at my maximum of 5500 or something? Again, I would have to look back in my records. It seems like SO long ago, but really it wasn't. It's crazy what cancer and treatment does to you.

I'll post again soon.

Warm Regards,
CancerDad
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Old 07-01-2006, 08:11 PM   #9
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Re: daughter post chemo but having problem

Cancer Dad, I just want to say that you are a true blessing to this board and the people who depend on it. When I read your responses to these people needing help and answers their doctors don't give them, it just makes me smile. There's no greater advice than from someone who has "been there and done that." Please keep posting and blessing these people. I know they can lay their heads down at night and sleep peaceful after reading your posts. You are truly a blessing. I pray for you daily!!!!!

 
Old 07-02-2006, 08:26 PM   #10
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CancerDad HB User
Re: daughter post chemo but having problem

Quote:
Originally Posted by flintrock
Cancer Dad, I just want to say that you are a true blessing to this board and the people who depend on it. When I read your responses to these people needing help and answers their doctors don't give them, it just makes me smile. There's no greater advice than from someone who has "been there and done that." Please keep posting and blessing these people. I know they can lay their heads down at night and sleep peaceful after reading your posts. You are truly a blessing. I pray for you daily!!!!!
Flintrock:
Thank you for YOUR kind words. Again, there are days that reading a positive comment really lifts my spirits and without getting into it, takes me away from my problems and gives me and my experiences purpose. Maybe I will take up writing a medical column once the books are completed! (a very slow process!!)

In all seriousness, it does give me purpose to try to help those on this board. I take this very seriously. I do hope that I help people more often than not as I reply to posts. There are always those times?? But I thank you again for your prayers and blessings and wish you the same.

Warm Regards,
CancerDad
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Old 07-03-2006, 04:55 PM   #11
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suezav HB User
Re: daughter post chemo but having problem

sammypt, thank you so much for your suggestion. it's funny, through my work, i had met a cancer survivor who's a physical therapist specializing in lymphodema. i was thinking of calling her and now i definitely will.

cancerdad, again i appreciate all the information you bring to all of us. my daughter has her MRI scheduled for this friday. maybe we will get some answers. the swelling in her back seems to have improved somewhat. she finds that if she sits too long, it starts to hurt. once she gets up and moves around she feels better. she even went kayaking yesterday with no after effects. i really feel it's related to the radiation and lymph node removal. i will keep you posted on the outcome of her test. thanks again! susan

 
Old 08-08-2006, 03:36 PM   #12
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suezav HB User
Re: daughter post chemo but having problem

hello again everyone. my daughter has had 2 MRI's to try to figure out what has caused the swelling and pain in her lower back. the first one was of the pelvic region and basically showed post operative and post radiation changes. the second MRI was of the lumbar region (insurance wouldn't approve this one-the doc actually had to fudge on the dx to get them to pay!) this showed a mild disc bulge at the L5-S1 level. it's funny, before cancer, i would have been concerned that my 23 year old daughter had a disc problem. now, i am GRATEFUL that it's a disc problem and nothing worse! so bottom line is that radiation is probably the biggest cause of the pain and swelling. that was our suspicion right from the get-go. i'm not sure if it caused the disc problem, but she will ask the doc at her next appointment in a few weeks.

cancerdad, you still rock! you seemed to have hit the nail on the head when you posted previously about the effects of radiation combined with the lymph node removal. i'm still disappointed that her own doctors couldn't figure that out!

so, all in all, she is doing very well. the pain is better although not totally gone and the swelling is much better in her back and legs. she just got back from a vacation in the dominican republic where she was able to wind surf and jump down waterfalls! ah youth!

thank you everyone for your concern. we are all warriors in this--patients and caregivers alike. i pray for all of us. susan

 
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