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Posts: 106
Joined: Nov 2004

Hello everyone. Looking for advice again. Back in June I was admitted into the hospital with dizziness and near collapse. I was on this new product called EX-Jade for iron over load due to blood transfusions. Brief hx. ca/colon 8/2003. Now
have myloid dysplastic syndrome due to radiation of pelvis. Transfusion dependent every 6- 8 weeks.
June. 1, 2006 ex-jade was put on hold. I had a petscan July 3 which was negative. I had an MRI of abdomen which was negative. I also had a MRCP which is an MRI of the bile ducts which was negative. I also had an upper GI which was negative. After weeks of repeated blood tests my pancreatic enzymes sky rocketed with no significant abdominal pain. They then reached normal limits on Sept.21,2006. On Oct.26 my oncol. ordered blood tests and now it showed the lipase, amylase and CA19.9 is on the rise again.
He did a repeat last week and they are furthur climbing. Amylase at 148, lipase now at 387,
CA19.9 is 72. MY oncoligist is baffled. I have no abdominal pain. The only thing different I have
been struggling with was severe lower back spasms
since Aug. 2006. I went to get therapy for my back as recommended by my primary care. Now the lumbar area cleared up and now I have severe muscle spasms in the upper back.It takes my breath away and I was not able to work. I have to be in real pain not to work. I have been taking extra str. tylenol since August which did not help much. I was then put on flexeril and naproysn which still did not help much. The chiropractor therapist who did non-invasive treatment which was only warm compresses and ultra sound. Once he did the electric stens which cured the lumbar area and is now the spasms are intensified in the upper area. I am now taking valium and advil. I am exhausted. Too much stuff now. What next. No answers. DR. not sure if the pancreatic enzymes and back spasms are related.
I am beside myself. Anybody out there with back spasms?? Also DR. was thinking that the pelvic radiation done in 2004 might have effected the pancreas from fragments of radiation rays. I have upcoming appts. with the surgeon, radiation DR.
and everbody else. Thanks for listening to me vent. Your friend Fran

spongebob's picture
Posts: 2599
Joined: Apr 2003

Fran -

Could the back spasms be related to blood chems being out of whack versus some sort of physical impingement on a nerve/blood vessel caused by some sort of cancer activity?

Have you had a CT done of that region?

I know when I over-do my iron supplements I get heart flutters (or maybe that's attribuatble to a certain young lady...?)

Don't know if this helps or maybe I'm waving my ignorant flag?

- SB

Posts: 106
Joined: Nov 2004

Bob, I had a petscan done on July 3, 2006.
All was clear. I had an MRI and MRCP of abdomen in June 2006 which was all clear. I had a MRI of the lower lumbar in 2005 which showed an insufficiency fracture of the right sacral and which repeated petscans showed that was all clear.
I do not know what they are going to do now. There is no way I can lay flat on my back to do an MRI of the back at this time. I meet with my oncol.every Thursdays for blood counts due to the anemia. I think he is going to go straight for a petscan. The weird thing is that the spasms in the lower lumbar area for the longest time subsided now it traveled to the upper area. The lower area is normal. Figure that out. I was wondering about the cancer coming back on a nerve. I don't even want to think negative at this time. I am hoping that this back issue is a separate issue. I will keep you posted. Thanks for your advice. Fran

spongebob's picture
Posts: 2599
Joined: Apr 2003

Fran -

Almost sounds to me like some sort of mechanical issue and not cancer - I would think that if there were some sort of tumor causing the pain/spasms by pressing on a nerve that that point of pain would stay put and just grow up with a tumor as it grew. I would imagine that a PET scan would have identified anything large enough to cause that sort of pressure on a nerve. Maybe it's a disc problem and inno way related to cancer.

Hopeing you find relief soon - I believe back painis someof the most agonizing pain available.

- Bob

Posts: 206
Joined: May 2005

Hi Fran,
Sorry to hear that your enzymes are on the rise again.. I don't know anything about that.. I don't think I have ever had a CA-19-9. I only have CEA and CA125 every 4 mos. I hope your radiation doc can maybe help you. Let me know how everything turns out. I will keep praying for you.

Gail in PA

Kanort's picture
Posts: 1275
Joined: Jan 2004

Dear Fran,

I hate that you are once again having to worry about these enzymes. They returned to normal in September so I know they will do so again. It is just so worrisome not knowing the cause.

Please know that I'm keeping you in my prayers.



KathiM's picture
Posts: 8077
Joined: Aug 2005

This one is out of the ballpark, so prepare yourself....

Have you had a bone DENSITY (Dexa) scan???? After chemo, that threw me into menopause, I emerged as osteoporotic...-2.7 on the T-scale. I can DEFINATELY get cramps, etc, if I do not keep up on my calcium...sort of hard, because the beast also caused lactose intolerance...sigh...BUT doable!

Please have them check, this obviously does not explain the enzyme rise, but...well...maybe the spasms and pain...

Hugs, Kathi

Posts: 106
Joined: Nov 2004

Dear Kathi: Thanks for your concern. yes I did have a bone density test last year and it showed
osteoporosis of the lumbar spine and left femoral neck. T score is -2.1 I cannot take calcium pills as I have an illeostomy. My colon is disconnected. The calcium would not be absorbed.
I am beside my self. I am hoping it is muscular-skeletal and not cancer coming back. The radiation also must have a significant effect on this long term. I will keep you posted on what happens with all these Docs. Your friend Fran

Betsydoglover's picture
Posts: 1255
Joined: Jul 2005

Hi Fran -

I wish I could help, but I can't. Still I wanted to wish you the best. With all those good test results, hopefully your test results will again become normal. I know how worried you must be (but also great news that all these results are negative.)

Take care,