Advice please! Olymphians?

[Alreadyhere]

As I've posted before DH had a colon resection along with peri aortic lymph nodes that could not be biopsied but were suspected of metastasis. Today metastasis was confirmed and the oncologist informed us the 6 months of chemo he underwent did absolutely nothing and he has a resistance to it. All chemos been stopped and now dr wants us to look into radiation. I thought there were so many more chemo options for those who did not take with folfox?! Oncologist says we've tried the best chemo for this and will not bother with any other chemo as it won't make a difference. Does anyone have experience with this? He says spread is distant yet the lymph node metastasis is localized?

[Kathryn in MN]

I would absolutely get a second opinion. I have had good luck with Irinotecan. If he has not had FOLFIRI and if he has not had Avastin or Irinotecan or Zaltrap, those are all very valid options. Some people don't respond to Oxaliplatin, but do respond to Irinotecan. Also if he is KRAS wild (not mutant) Erbitux may be an option. (It may also be an option for certain KRAS mutants, like codon 13.) He is FAR from out of chemo options.

If the nodes are in a location where they can be surgically removed or radiated, that is an option. But the problem is that once it spreads to the distant nodes, in most cases new ones will pop up in other nodes later. Chemo can keep them under control. Sometimes they are in spots that cannot be radiated or surgically removed. My para aortic nodes where behind the heart and against the spine and my only option for them was chemo. Luckily FOLFIRI + Avastin took those two out.

I would suggest that you get a second opinion from another medical oncologist and also meet with a radiologist and surgeon - or go to a major cancer center and ask for an opinion from their Tumor Board.

[scattered edge]

My node mets were diagnosed in August (2011) my onc put me on FOLFORI - I had a horrid reaction to irinotecan (and I've never learned to spell it ) He ordered a CT scan at that time and found the lymph nodes had shrunk - significantly. ..he discontinued the irinoetcan because the treatment was making me sicker than the cancer. I am now on 5-FU and Avastin. A CT scan on Feb 6th showed no change. Today I had blood drawn and CT scan - at Mayo clinic in Rochester - I am so excited to see the oncologist tomorrow morning for my second opinion.

good luck on your journey, best to you -
Rosie

[Dori]

Yes. Please get a second opinion. I agree with Kathryn that you are far from out of options.

[Ashlee H.]

FOLFOX only kept me stable - it has been FOLFIRI and then FOLFIRI + Avastin that kept knocking down the lymph nodes. I'll be trying Zaltrap with FOLFIRI next week. I agree with the others - get a second opinion. FOLFIRI hasn't cured me, but has kept me around for a few more years and healthy enough to continue to work full time.

[Nellie]

I agree with the others - definitely get a second opinion. I can't comment on other chemo options as I'm still on 5fu, leucavorin (The folf without the ox. ) and avastin.
This Wednesday will be treatment no. 16 - I really don't know if I'll be having chemo though, as my white blood count is sooooo low. Onc told me to get to the er if I ran a temp of 100.5 and they would put me on IV antibiotics - my temps been normal and I hope my platelets etc have bounced back!
Good luck, let us know about your second opinion xx

[skypup]

I'm with all the others -- you have many more options than just folfox. Please get a second opinion. I don't know about you, but I wouldn't be comfortable staying with an onc that wrote me off that quickly...

[Kathryn in MN]

I'm with all the others -- you have many more options than just folfox. Please get a second opinion. I don't know about you, but I wouldn't be comfortable staying with an onc that wrote me off that quickly...

AGREED 100%!

[pollo65]

110%---get a second opinion, don 't trust an onc that says he used the best chemo and doesn't want to try another.
pollo65

[Alreadyhere]

Thank you everyone for your responses. I refuse to let oncologist write him off so quickly and will definitely write a list of some of the other chemo cocktails you all have suggested, if he doesn't want to hear me out well move to another oncologist ASAP. The oncologist has strongly recommended radiation instead of chemo.. Is this a better solution in terms of permanently killing off these lymph nodes and then demanding to move to another chemo regimen or is it best to demand another chemo regimen without pursuing radiation? The dr is so adamant about not pursuing anymore chemo as aortic lymph nodes are still localized and wants radiation in terms of achieving a cure, he hopes. I know the odds are against us but we won't give up, just need to know what path to take.. Demanding more chemo first or radiation?

[Kathryn in MN]

Please get a second opinion from the professionals. We are only patients and we don't know everything about his situation. See what another oncologist thinks - if they agree with his onc, or have a different approach. Then go with what you think is best based on their reasons for recommending the approach they do. If necessary, even get a third opinion.

[skypup]

Agree, agree, agree with Kathryn. Only an oncologist who has looked at your records will be able to assess your options. And you really might want to think about getting that second opinion right away. If there is a chance for a cure, you don't want to miss it! And don't worry about hurting your doc's feelings -- they are used to having patients ask for second opinions.

[Alreadyhere]

Thank you all I've taken your advice and we are moving to a major medical center several hours away. Due to generic testing our local oncologist suggested they could possibly do biological immunotherapy? I'm not sure what that is? Has anyone here had this type of treatment.