newbie..Husband dx with stage 4 colon cancer 10/14

I'm so sorry you are a new member of this group.  My husband was the cancer patient, too.  He never had back pain, but I would definitely bring it up on his appt. this week.  He may still get chemo, but they should check it out through another test to see what is going on.  Lots of pain meds don't always agree with bowel issues and chemo.  Folfix gave my husband extreme constipation.  Folfiri gave him usually 1 day of diarrhea which was controllable.  His cancer was limited to his colon, small intestines and eventually lymph nodes which caused other pain, but not back pain.

I pursued the ACS and several other so-called charities,  I was not able to receive one red cent from them.  I had been told the ACS gives gas cards for people in treatment and when I called our local office they said they don't do that anymore, they only offer rides.  I went through a 20 minute phone interivew with one place only at the end to be told "Oh, sorry, that program is closed"  I felt like a fool and was humiliated.  Club Blue Note also denied us.  I have donated to the ACS for 35 years only to be shut down when we needed their help.  I have changed my donations to give directly to people or a local group that gets 100% of the donation.

Good luck

Linda

When did the back pain start, and when was the image taken which the oncologist refered to in order to say that it likley wasn't cancer?    When my wife finished her course of chemo her liver tumors progressed very rapidly over the course of only two months, which was only learned on hindsight.  The liver tumors caused a lot of pain which was located under the rib cage along the right side of her torso.  The pain from the liver was due to the tumors expanding into the web of nerves which surround the liver.   

I'm not saying your husband's liver is involved - only that things can change very quickly and your oncologist may need to be prompted to sort this out and not let too much more time pass before he does.  Also make sure your huspand has up-to-date imaging to help nail down the problem especially if the last images pre-date the onset of the pain.          

Don't be discouraged ... keep trying to find financial assistance.  As you can see from what others have said, experiences can vary greatly. Don't give up.

I can imagine that you and your husband are reeling from the recent diagnosis, surgery, pain, and fear of the unknown. Try really hard to take this one day at a time and be present in the moment as much as possible.

The cancer journey will test you, your husband, and your family. Sometimes you will think that you cannot go on .... come here for support as there are caregivers and also individuals with cancer who have great compassion and knowledge.  There is no one way to go through this journey as you will discover.

With regard to the back pain ... I would not let pain discomfort be disregarded ever ... let the doctors know it is unacceptable. Sometimes the oncologist or surgeon is not the best source for comfort care as they have become accustomed to their treatment protocols bringing unfortunate side effects and discomfort.  I do not think they are sadists, they simply have little else in their tool box to provide.

But, there is still hope for relief and comfort.   Most large hospitals and cancer centers have a Palliative Care department designed to provide comfort for chronic pain from illness.  Check out to see if your hospital has one ... don't confuse it with hospice care or with end-of-life care ... it is a special department designed to help provide needed comfort from diagnosis through treatment with chronic illness.  Often they will have a team of folks to help - social workers, spiritual support, mental health care, and doctors who have been trained in palliative care.

Sending strength to you and your family. ~ Daisy

skeets1961 said:

Thank you all for your

Thank you all for your responses.  I will check into some of the organizations and prompt the dr for scans.  I do believe but would have to ask my husband, that his back pain started after the scans which would explain why the dr didn't see any reason for his back to be hurting.  Not sure i have a lot of faith in him. He's a well known/respected onc in our area but seems a little uncaring to me.  The staff is very caring and wonderful so far. 

also, the nurse said his blood work looked great after his first chemo and was going to let us know what the "marker' results were but we never heard anything back yet.  Is this test reliable?  She described it as a guideline for them but for us not to put too much emphasis on it.

 

Thank you for taking the time to reply to my message.  

Feeling comfortable with the Oncologist is most important. If you find him uncaring, then I think you might want to look around for someone who you feel cares. 

As for blood tests during chemo, I can only tell you of my experience, which was  having an oncologist who would NOT do a CEA while I was on chemo, because he said the results are not reliable. 

I know there are others here whose Dr. do CEA during chemo, so I guess it depends on who you are seeing. 

I do so hope that your husband can find out the cause of his back pain. That is what pain is all about, alerting us to problems. Meds are fine, but finding out the cause is most important. 

Welcome to the forum. I am sorry that you had to come looking for us, but now that you are here, know that we here to help. 

Sue - Trubrit

Skeet,

What a way to start a new year...For most ot us the finaincial realities of this disease lead ust o new levels of challenge and even drastic lifestyle changes.  

Please do try to talk to the Social Worker in Oncology as well as the patient advocate (they go by otrher names).  Perhaps the hospital is a non profit and they can offer you some sort of copay assistance to reduce your liability.  

I am sad to say that you may need to advocate for your husband harder than others because of the rising care bill and the nature of "bean counters."  There are some real tigers when it comes to advocacy who post regularly to this forum...they may be able to offer some tips and tricks that they have learned over the years.

Please keep us poeted

Sorry you had to find us and also sorry can't help with the back pain issue.  As others have expressed, please get a second opinion if this doctor doesn't want to pursue the issue of finding out why his back is bothering him.  Don't ever let a doctor let anything go just because they don't feel it's an issue.  If he hurts, get to the bottom of the issue.  You paying $6,000 per treatment with good insurance doesn't sound like very good insurance.  Most providers have a max co-pay, but you need to read your policy.  People call me all the time asking for money donations for cancer funding and I've heard that it's hard to get but I'm sure there is funding out there some place.  Good luck with hubby's treatment and the money situation. 

Kim