guidance...help please

Hi guys....just me with absolutely no advice....just sending thoughts and love.  Ahhhh **** such a long long fight...I wish you could catch a break now.Thinking of you Kathleen...starting to turn cool at nights here now....34 degrees with frost one night so time to dig out the mittens.  So many decisions for you to have to to face. Hugs to both of you, mags

How do you make decisions if you have two different opinions?

Before tx change:  Read up, and get as much data as much as possible. Work on 3rd, 4th etc opinions until the story makes sense.  

During tx:  Gather more and better data (usually blood data) than normal.

If we have two options we don't like, we look for [someone with] a third option.  We look to decrease toxicity and add coverage of biomarkers or pathways.  

Sounds like you are still looking for a better offer.  Surely you've mentioned our various tales of cimetidine, PSK, celecoxib, metformin, vitamin D3, IV vitamin C, etc.  What do they say beyond "not standard" to complementary additions?  How far can your naturopath (if I recall correctly) provide CAM support to standard chemo?

Did Dr Lenz say anything about adding Celebrex to common treatment stacks?  Your note leaves me unclear whether you will attempt direct chemo testing on live cell clusters, or  histopathology and genetic testing on fixed slides alone.

best wishes

BUT, I WILL say, that I kept getting '2nd opinions' until I felt comfortable.....

AND, I used 'complementary treatment'....as my beau calls it 'woo woo'....always asked first....When statement was made "It will not help"....I always responded with "Yes, but will it HURT?"  If the answer I got was "No, but...."  I went for it!!

Sending big, warm hugs to you both....sigh...wish I had a magic wand....

Hugs, Kathi

Hi Kathleen,

I am so sorry that **** is going through this and you have to make these tough decisions.  We have a very similar situation as I have a few lymph nodes and some small spots on the lungs that appeared earlier this year.  My onc. is Dr. Lenz and he put me back on Folfox and Avastin when the lymph nodes were growing and Folfiri and Erbitux were no longer working.  I had not been on Folfox and Avastin for three years.  I am on a low dose of it because my white cells were dropping too low and I was having to skip treatments.  My last scan showed no growth and everything has remained stable even with the lower dosage. My CEA actually dropped a little, too.  Although, I wish the mets had completely disappeared, I am happy that I don't have any growth on a tolerable treatment regime.

I will be praying for you and **** as you decide your next treatment path.

Hugs,

Sara

My onc said that the Rego drug does not offer much in the way of life extension.  A couple of months average is what I remember him saying about a study.  And he said that it was really bad on hand/foot syndrome....apparently harsher than Xeloda. 

Know that would interfere with ****'s active lifestyle of surfing and such if the hand/foot thing was bad enough....but again, he might react well to it....he's done so good with things it has amazed me over the years.

The other thing I would mention is that I am taking a new drug now (ZALTRAP) that is being substituted instead of Avastin.  I am taking that in conjuction with the full Folfiri package, pump included. 

I've had 3 doses of it so far...#4 tomorrow during another infusion. Not too sure what the side effects are at this point as I'm feeling poorly from the other chemo drugs.  Safe to say it probably packs some kind of a wallop. 

Anyone perhaps this new drug might be of benefit to ****......the Rego is available for me, but he feels that the efficacy would not be appropriate for me at this time....so we Zaltrap for now and keep this one available. 

All my wishes for you both.  I'm saddened to read the news of progression.  I fear progression as well on my first scan....I'm almost at the point where I just don't want to know anymore. 

But, understandably it would be devastating news for me as it is for you guys right now.

Thinking of you both:)

-Craig

oh my dears, I hope that whatever is tried works weel.  I think a third opinion would help, anod checking a little more into how well the Regorafenib really works.  Has he been on other chemo's like Irinotican and Erbitux combo yet?  That worked great on many of my tumors (if **** is KRAS wild).

will be praying hard for you both!

Winter Marie

My oncs (Florida and Mich) seem to like their results with Folfox on CRC. I had colon resection followed by a full round of Folfox in 2010 and was ned almost 3 years. Just had a lung met VATS wedge resected and just started Xeloda to zap any remaining bugs. Lung Surgery was a breeze. No lympth node involvement this time. Our situations aren't that similiar but sometimes others experiences help. So many options, so many decisions. Prayers for comfort and guidance.

tanstaafl said:

gem; erbb2

Lisa42 got 1.5 yrs treatment out of her gemacitabine - xeloda - avastin combo, that had some support from Dr Lenz' group.  Likewise there are other  gemcitabine combos and the nutrition-immune support angle could be increased greatly, too.

Also Gleevec (imatinib) has been used with some success in a subset of 3rd-4th line patients (ca 10-20%?) with overactive Erbb2, a test that may be in your package. So far we prefer to try to modulate Erbb2 naturally. 

 

I'm on regorafinib now, and I have not had any bad side effects, nothing I cannot manage and I work.  Kathleen I already posted on the colon club forum but not sure if you saw it.   If you are thinking of clinical trials  some you will be disqualified from if you've had regorafanib.   So, do your research.   I find this drug far easier than the infusions, I've had folfiri with avastin,  folfox.     I've recently had scans,  showed shrinkage in lung thingys .... BUT I have a lesion in my abdomen that grew slightly.   So, I don't know if my onc. will keep me on it because of this one friggen lesion that isn't responding.    I don't have any hand or foot syndrome.   But, I was to stress, and perhaps ask Dr. Lenz if he goes on regorafinib does it affect any future drugs/clinical trials you may be interested in.   

..hugs not wanted to read about **** after coming back after a few weeks.

Just sending you both hugs

annalexandria said:

Is there any way they could be combined?

Somebody over at the CC was talking about having several chemos combined (I think the end result was FOLFOXIRI).

I have no idea what this would mean in the way of side effects.  Maybe it would be way too much.  But it seems like since there is a problem with chemos working only on certain tumors, and not others, that a combined approach might offer more possibilities.

How long will it take to get the results from the tumor testing?  I'm hoping that will give you the answers you need, but I imagine you don't want to wait too long before getting tx going.

Dang...poor ****.  I'm so sorry you both are going through this.

There's a combo called Folfirinox (oxiliplatinum, 5fu, irenotecan).