HELP ME PLEASE!!

iVillage Member
Registered: 08-14-2007
HELP ME PLEASE!!
12
Sat, 12-29-2007 - 2:44pm

Hi, everybody.  My dad was diagnosed in May with Stage 4 Colon Cancer, which has metasisized in his liver and lymph nodes.  It is in his abdomen and kinda floating around all over.  He just finished 6 months of chemo last month.  It didn't "cure" anything, but it did keep it from getting bigger, I think.  He is scheduled for another 6 months of chemo starting Jan. 14, 2008.  The doctors basically said this chemo isn't designed to do anything else but "keep everything on an even keel", whatever the hell that means.  I want to get a second opinion from somewhere, but I don't really know where to go.  Most places (like MD Anderson) keep telling me there is nothing they can do there that we can't get here in Klamath Falls, Oregon.  Nobody can give me any kind of other answer/advice on where/how else to get help.  I am extremely interested in integrative care.  I am a big believer in treating the entire person, not just the tumors themselves.  We live in Southern Oregon and are willing to go almost anywhere to get help.  So, I'm basically asking for anyone to please give me suggestions of places to look into, possibly where they have been in a similar situation, where they felt they got the best care possible.  I spoke to a couple different reps at Cancer Treatment Centers of America, only Mom's and Dad's insurance will not cover them for that because its out of network.  So, if anyone out there lives in California, where my parents live (we're right on the California/Oregon boarder) who recommends a certain cancer treatment center, please, PLEASE let me know.  I feel an enormous sense of urgency to get a second or third opinion before he starts his second round of chemo.  Please help me.  I can not give up hope.  I know someone out there can help us.  I just need to find them.  I am desperate.  I CAN NOT LOSE MY DAD!!!!

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iVillage Member
Registered: 08-14-2007
Sun, 02-03-2008 - 11:39am
Wow.
iVillage Member
Registered: 02-02-2008
Sun, 02-03-2008 - 1:28pm

Good to hear back. My husband's liver mets are tiny and consume over 80 % of his liver with two larger (3cm) tumors in each lobe. Scripps and UCSD docs say RFA can blast larger tumors if not too big, and that one can live with about 10% of their liver, so if a candidate for resection liver, there are procedures for that too. However, my hubby's friend with same condition also had surgery to remove affected part of liver, as liver regenerates itself (grows), but within a year, his liver shut down.

SIRTS will be used for third time on my husband in about March to get those little lesions--if his CEA is near normal. Then afterwards, a third line treatment of chemo--Folfiri and Avaston which is NOT a chemo drug. We have been told numerous times by numerous docs that you have to change cocktails after each two month session, as the cancer cells find a way around the previous chemo cocktail. My hubby's CEA was around 170 after diagnosis, and then down to 6 following first session of chemo and then to 10 or so before SIRTS, so we hope for a downward spiral of CEA to get the metobolic activity down.

After our second and third opinions, we fired our original medical oncologist, as he said no to RFA and SIRTS, cyroablation and chemoembolization, and never gave my husband any PET/CT scans for six months! He was apparently trying to keep down HMO costs is our best guess, since we learned docs --who are supposed to be getting the best for their patients fighting for their lives--get incentives to keep down HMO costs! See Michael Moores' SICKO regarding HMOs in the American healthcare system. We were told by numerous docs that HMOs expect an argument for denials, and that most patients don't argue when a referral or treatment is denied by the managed care medical group.

After our first chemo doctor, we found we had to let our new radiology oncologists docs know we did research on the internet, kept up on the latest news, and expected the best treatments available, and would argue any denials with out HMO and primary care physician, which we did several times. Our attitude mainly put the docs on notice that we would not be pushed around by an HMO. We even had a hospital advocate tell us the procedures costing $130k each would probably not be paid for by the HMO; We informed them we would fight it as we had before. Ironically, the HMO has paid for all procedure so far after numerous arguments with the medical group contracts' person to do the right thing; In CA, only a doc in the medical group can deny a treatment, not some clerical or admin person. So, get two or three docs with second opinions recommending a treatment, and the medical group really has to have a strong reason to overrule your docs and deny treatments. This was our best advise from some other second opinion docs at UCLA ,and was what got my husband into SIRTS. We found out the pc physician worked with the medical group contracts person to deny the treatments. Without arguing for these treatments, my husband would still be on chemo with even more severe neuropathy.

Let me know how it turns out. Your mom sounds like a good candidate for SIRTS. My husband virtually had no side effects, unlike with his chemo with Oxiliplation causing severe neuropathy. I even see clinical trials using oxiliplatin, and feel very sorry for people who get its bad side effects while their docs keeps prescribing it.

Take care.

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