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daughter post chemo but need help!

suezav
Posts: 42
Joined: Dec 2005

i haven't posted too often but i read and learn so much from all of you.

my 23 year old daughter finished her last folfox treatment on may 22nd! she was dx in april 05 with stage 3c rectal cancer. she had chemo, surgery, radiation with 5fu, and had 8 more folfox. she recently joined a gym and weight watchers to lose the 15 pounds she gained on chemo (who would have thought you could gain weight on chemo--the ultimate insult!) well, she has developed pain near her coccyx and swelling in her lower back. it's scary because it's too close for comfort to the rectal area. first she was told she probably injured it doing too much exercise. she stopped exercising and still no improvement. she had a CT scan and it was thankfully clear. they x-rayed her back and all the bones, etc. look fine. she's seen an orthopedist and today was examined by her oncologist and surgeon. no one has any answers. the swelling in her lower back wasn't quite as bad today and none of the doctors seem concerned. has anyone out there had lower back swelling after finishing up treatment? we're thinking it might be related in some way to the residual effects of the radiation. it seems unbelievable to me that these doctors have treated so many patients with the same dx and no one has ever presented with these symptoms? so frustrating! also, the orthopedist wants her to have an MRI and her cancer team doesn't think it's necessary. i think she should have it so we have the total picture. any help or advice would be so appreciated.
god bless all of you warriors out there.

p.s. on may 18th, i had the privilege of seeing my very determined daughter graduate engineering school (with honors and on time). to quote her surgeon, she's a "remarkable woman."

rthornton's picture
rthornton
Posts: 346
Joined: May 2005

That is frustrating that your daughter has to deal with colon cancer at the young age of 23 (I used to think I was young for a colon cancer patient!). Well ... I have no clue what might be causing her to suffer lower back swelling and pain, as I never had any symptoms like that. But when you are recovering from cancer treatment I think that any unexplained pain should be taken seriously. In any event, that is really great that she just graduated from engineering school. I would agree with her surgeon that she is quite remarkable!

Rodney

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

First off, congrats to you and your young daughter on both graduation from school and from cancer and chemo.

I am also a young survivor (27 at dx in Oct 2004) with stage 3 colon cancer in my sigmoid colon.

I did not receive any radiation as my "tumor" (a small polyp) was totally removed during surgery. I also had the folfox treatment. I also experience pain in my lower back, around tailbone area. It's very hard to pinpoint. I gained weight during and after treatment. After chemo I decided to change my life and excercise more and eat better. I notice when I excercise more I experience a slight increase in ... not really pain... but an ache maybe?

At this point, the ache comes and goes and is very tollerable. I have not had any swelling to my knowledge. My CT and PET scan's have not showed anything to be concerned about. My oncologist said that we'll keep an eye on it and is not concerned. He and his team have also said that the colon resection is just like any injury and can cause a small amount of discomfort at times. I guess this makes sense. I broke a bone in my hand in 4th grade and it still causes me discomfort from time-to-time. I hope this is the case for both your daughter and myself.

I would keep looking for an answer if it bothers you, though. You are your own best advocate.

What a great mom to be here posting for your daughter.

Patricia

Betsydoglover's picture
Betsydoglover
Posts: 1256
Joined: Jul 2005

Sue -

Congratulations to your very amazing daughter. So sorry she has to deal with this at such a young age, but it sounds like she has been dealing like a real champion.

I don't know anything about the lower back pain and swelling. It sounds like much testing has been done, but as Patricia says you are your own best advocate (or in this case your daughter's best advocate.) I'd go with the MRI regardless of what the oncologist thinks. As you say, it will add to the picture.

In case your daughter is worried about an MRI, I am slightly (very slightly) claustrophobic, but I have had 4 and don't find them to be too bad - especially if they give you headphones to listen to music. Doctors will generall prescribe a couple of ativan or xanax tablets (mild tranquilizers) for use during an MRI if your daughter is worried - don't hesitate to ask. That's what I have done - it mellows you just enough to knock the edge of being in that tube and for me that is all it takes. Also, before I had my first one, I always imagined a dark tube - that really worried me - not dark at all - very bright in fact. Of course none of this may be worrying you or your daughter, but in case it is, I thought I would share.

Take care and good luck,
Betsy

P.S. In addition to having an amazing daughter, you sound like an amazing Mom!

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

I , like Patricia was diagnosed w/ one polyp to the Sigmoid colon, Stage III, which turned out to actually be Stage IV. Anyway, I suspect that your daughter did something wierd to her back at the gym and it is probably not cancer related. I also exercise alot and it is natural to think that every ache and pain might be cancer. It is easy to forget that all the other "normal" things can still happen to us. I would think that the swelling will go down and it will probably be fine. I would go ahead w/ the MRI if the problem persists, I don't see what harm it would do!I backpack alot and I have lower back pain sometimes and of course I get all paranoid about it, but it is exercise related.
Good luck to you both,
Susan.

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Sue, Pardon me while I get a LITTLE graphic.
I had my rectum/sigmoid colon removed due to stage III rectal cancer. May 05. Bathroom 'performances' are back to normal, but just before, I get an ache in my abdomen. I know it's time to head for the bathroom.
My surgeon told me that a low bowel resection like mine is called the open heart surgery of the abdomen. And, one year later, I STILL drive with a pillow...my coccyx can get a little sore when I sit too long on any surface, worse on a hard surface (like the 'tables' for weights, etc at the gym????)
Congrats to your brave daughter. And to her brave mom!
Hugs, kathi

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Congrats to you and your daughter., Has she had a recent pet scan. I am sure it is frustrating to have discomfort and not find answers.

Maureen

4law's picture
4law
Posts: 112
Joined: Dec 2004

MRI is non-invasive. Orthopedist recommends it. I can't think of any reason not to have it. Why take any chances? If it shows nothing, your daughter has peace of mind. If something shows up, she caught it early. In my opinion, it is a no-brainer -- do it.

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Congratulation to your daughter on both of her accomplishments....completing engineering school and chemo. I agree with the others about her having the MRI. Peace of mind is priceless.

Hugs,

Kay

DK2006
Posts: 126
Joined: Jan 2006

Congratulations on your daughter's accomplishments! She is awesome.
I agree with the others and I would get the MRI. Was your daughter on neupogen during chemo. Is she feeling the side effects of neupgen along with a muscle pull?
I also gained 12 lbs during chemo. (just finished up last week.) and couldn't understand the weight gain since I was eating well. I am also working to lose the extra weight.
Best wishes to your family, Donna

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

Donna,
I would guess it might be from the pre-chemo "pre-meds". The kinder, gentler oncs will include a steroid-based anti-nasuea drug...These tend to cause weight gain.
I LOST 30 pounds...my onc was NOT on the kinder, gentler list...either time!!! Sigh.
Hugs, Kathi

DK2006
Posts: 126
Joined: Jan 2006

Hi Kathi,
Thanks for your insight. I was thinking that maybe it was the steriods. It got to the point that I dreaded weighing in more than the chemo!!
I'm hoping as I detox and workout the weight will come off easily. I was told the average person on folfox loses 20 lbs., so it was quite the shock to gain weight when I didn't seem to be eating differently. Best wishes, Donna
p.s. I love your upbeat attitude in your posts.

jenalynet's picture
jenalynet
Posts: 363
Joined: Nov 2005

Hi and congrats to your daughter, she truly is a remarksble woman. I'm no help with her problem but had to reply here..I hope she finds an answer soon..Sending good thoughts..Audrey

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

You are lucky to have such a determined daughter and she is lucky to have such a wonderful advocate.

Is the swelling hard or soft? Does it leave an indentation if you push on it? If it is soft and indents it have some fluid in it and if it persisted one could consider putting a needle in it to get a sample. If it is hard then the MRI could help- the MRI defines soft tissue growths or problems better than the CT scan. Hopefully she just overdid it. By the way, how long has it been since she stopped exercising?

I hope it just disappears.

vinny3

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