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

skeets1961

Hi,  we are still in the beginning stages of it all and needed to see what others are experiencing just to try to get a grasp on what to expect.   My husband of 34 yrs (age 52) was diagnosed with colon cancer in october that mets to liver, lung and stomach lining.  He had his first round of chemo almost 2 wks ago and will be doing another one this upcoming wednesday.  His biggest complaint is back pain.   We asked the oncologist if it could be possibly cancer and he looked at the computer and said that it was unlikely b/c that's not where the cancer was.  Let me add that from the time he was diagnosed on 10/13/14, he had surgery to remove part of his colon (he has colostomy) and a subsequent infection so he didn't start chemo until 12/16.  His back pain is so severe that he takes slow releasing morphine tabs 2x day and in between that, vicoden.  It sometimes takes the edge off but more often not.  He is constantly on the heating pad and i rub his back often.  Should we request some type of scan to see what is causing this pain?  with his previous work, he finished concrete for over 20 years so he's always had a sore back but nothing like this.  It is very sad to see him in pain when i can't do anything about it.  

Also, i have decent health insurance, but i'm finding out that the co-pays for chemo alone will be $6,000.  that's is besides all of the dr appts, hospital visits, med, etc.  Is there a place that anyone can recommend to get help paying these?  This is all so overwhelming.  I appreciate any advice you can give me.  thank you.

PhillieG

Sorry to hear of your husband's diagnosis. I just did a quick search on Google and found these two resources for financial help. I have not had any experience with either of them (I'm just broke )

This one is from the ACS

This is from CancerCare.org

I hope this helps. I'm sure others will chime in.
-phil

LindaK.

Sorry

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

jen2012

Sorry to meet you here...my

Sorry to meet you here...my husband also has stage 3 crc, diagnosed in August 2012.  He had bone mets last year and was in severe pain.  Has he had a pet scan?

 

if he is getting avastin or xeloda, they both have co pay plans.  

http://www.genentech-access.com/avastin/patients/find-patient-assistance/co-pay-cards

http://www.genentech-access.com/xeloda/hcp

 

we haven't been able to get the billing right to take advantage as our deductible gets used up by tests, surgery, meds etc. but see if the social worker can help you work it out.

peterz54

timing

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.          

mukamom

peterz54 said:

timing

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.          

We got

help from the Patient Access Network Foundation www.panfoundation.org. They help with copays for certain cancer drugs and you can apply online and get an almost immediate determination of benefits. It is a set amount and can be renewed if funds are available. Robert has exhausted his benefits and can't reapply until April. If you are approved it is retroactive but I forget how far back you can go. 

Hope you guys can find the source of the back pain. 

Angela

Daisy13

You will find support.

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

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.  

Trubrit

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.  

Think about a second opinion

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

marbleotis

Hi sorry you are here

Please get a 2nd, 3rd and 4th opinion.  We are here to assist, help and vent.

Keep us posted.

fatbob2010

Just POOP

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

peterz54

As for the cost....

I think it's criminal.    Our bill was a bit over $20,000 per chemo.   A few small bags of clear liquid.    I learned later that the oncology center we used gets a good cut of this, so there an added  incentive to treat.   Check your policy - if you have decent insurance it should have a  maximum family out of pocket expense at which point and insurance will pick up 100%.  Hopefully that will be the case for your family.   Unfortunately with a new year, your deductable and max out of pocket (if you have that) will start over.     

Annabelle41415

Sorry

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

annalexandria

I'm very sorry that you and your husband find yourselves in

this position...it's terrible to have to deal with a serious illness and financial concerns at the same time.

If he's being treated at a major hospital, they may have a program to help with the bills. As others have said, I would look into this.  And ultimately, you can only pay what you can pay.  Something like 70% of bankruptcies in the US are related to medical bills, which is unheard of in the rest of the first world.  Unfortunately, you're in *good* company when it comes to this struggle.

As for the pain, you do need to push to find out what's going on.  I had severe side pain that got worse and worse during chemo, and it was pretty much ignored by the doctor.  I finally landed in the ER because it was so severe, where they discovered some significant tumor growth. That may not be the case for your husband, but you will want to find out, one way or another.  If it is tumor growth, there are options for treatment (in my case, it was surgically removed, and radiation can help if it's in the bones, like Jen's husband...and we're both still around, so have hope!).

Let us know how it goes~AA